Calling an emergency IEP, already....*sigh*

[milivica]

Where do I begin...there are several issues going on, I'm just going to copy my last letter to school, after they wrote me letting me know Vince is behaving oddly/badly at school which began after they started a 'no hug' policy with him, and told me it was ok with him....

Well, Vincent hates the high five idea, and perseverated about it to me all night. It's not ok with him, when is rejected, he may not talk about it. But, as is evident from yesterday's behavior at school, this 'No Hug Policy' effects other areas of his studies and behavior at school (as well as home). This perseveration impeeds his learning. I would say this would apply to any child. And when we spoke I understood it to be more than a 'No Hug Policy', he's been banned from being comforted in every way familiar to him, that shows him others care. No resting his head on a lap to cry, not even crying on a shoulder on the bus, no pinkie handshake. So, now you are aware, it is not ok with him. And now you are aware, he is not getting what the change is about. He might even be able to recite 'your' words, but he does not get it.

I don't get it either, so I'm not surprised he doesn't. I've really tried, and I just don't get it. When he hugs me too long or strongly, I've worked with him to be gentle. Now, when he hugs me it's appropriate. Hugging and physical touch is something that goes on in the world. If he needs to learn to hug...how hard, how long, what the signs are that the other person is done, then why was the decision made to create a No Hug Policy rather than teach him?

<snip>

And for the last time, it's not that I need to WITNESS Ms. H. talking to Vince about no more physical contact between them. I need to be there so when he says things that show me he doesn't understand why he can no longer touch her or be touched by her, I can explain her perspective to him. Which is hard enough since I myself don't understand the benefit of a No Hug Policy versus teaching him to be appropriate at school where hugs DO take place, tears DO fall and comfort IS given all around him. It's a nonproductive solution, to force a child with autism of all things, to understand why he will no longer be comforted with a hug or putting his head on a shoulder while crying. But, because I think so much of Ms. H., I want to find a way to work within her comfort zone. I can come any time of any day, so it's a bunch of hooey that it'll take another 10 days for this conversation to take place.

How about school considering explaining to aides, before BANNING or making a NO HUG POLICY, that if a child doesn't let go quickly enough during a hug, you help them to do so appropriately so he can take that with him, throughout school, out of school, and into his life. You are saying "Vince, you're doing this wrong, so no more touching". Honest I'm at a loss to grasp this. It's going badly, so your solution is don't do it at all. No one, not one person I've consulted about this issue, understands this solution. Or why it wouldn't be a better solution to get the ADULT aide rather than the CHILD student, to understand a hug appropriately policy.

Really, I'm starting to feel insane, my child is autistic, why punish and restrict and make policies that teach him nothing, other than that he has failed, at even a hug. Am I only making sense to myself?

But there's a bigger issue. Why is he currently doing work so far below what he is able to? Why were there things he could do in past grades, he can no longer do? We can talk about all of this at the emergency IEP, requested 10/16/06.

Thank you,

[Kristen (ColeysMom)]

Oh Mili, this is SOOOO out of control. You are right and Vince is appropriately confused and upset...I'd be too. I mean if anyone took their affection and comfort away from me, even IF I had done something wrong, I'd be really upset, and probably in MORE need of some comfort.

UGH!

And as for the rest of the stuff, this is where I went nutso in my loooooong post the other day, but I guess I didn't do a good job expressing myself...I just don't understand why Coley isn't doing things he's done before...well he's refusing, but, uhmmm, isn't this kinda typical...why has this gotten so big...I'm upset about the 'lifeskills' type stuff he's chosen to be defiant about...and I'm just not sure WHY it's happening, which has me even more upset...I'm still waiting for ours to be scheduled...did you actually meet with them yesterday?

KJ

[Braindrain]

Mili, I don't blame you for being upset. If it were my child, I'd feel the same
way. One thing that particularly bothers me is that you said, "they started a
'no hug' policy with him, and told me it was ok with him...." So, they've
told him he can't hug anyone, but everyone else can hug each other??
And, they think he's okay with that?? What about when he sees the other
kids hugging each other and wants to join in? Who's going to stop him and
how are they going to do it? And, how do they know "it's okay with him"?
Did they really ask him if it was okay? I'm betting that they didn't.

I wish I had some advice to give you about the work he's doing in school,
but all I can say is that I hope you get some answers and that they are
satisfactory to you.

((((((((Mili)))))))) ((((((((Vince))))))))

[peglem]

I'm thinking the agenda here is not being stated on the surface. I think they are really concerned that with Vince approaching adolescence, he is at risk for developing sexually deviant behaviors. Perhaps they are engaging in overkill. But i think it is more likely that they are not being straight foward enough about it for Vince to understand, because sexuality is an uncomfortable topic for them. Maybe he needs to be taught the difference between sexual touching and other kinds of touch. And since he is not apt to get the subtleties, this needs to be taught very explicitely and matter of factly.

[milivica]

Ok, I feel sane again.

KJ, I'll have to read your post. I just started posting here yesterday, I'm a bit lost on if I'm supposed to be here or BT2 or what. I'll have to check out your post, sounds like we have some simular issues. And the IEP will have to be in 10 working days from my request, so nope, I asked for it yesterday.

Braindrain, I was just nodding YES, YES, YES, as I read your post. And he has talked about being upset cause another boy gets to hug Ms. H....of course, he doesn't seem to grasp that the other boy sort of seized her from behind and threw his arms around her waiste, and was asked to let go several times. He sees the boys arms around her, and that's a hug to him. And that to him, is her wanting to hug that other boy, but not him. I really wonder how much if ANY of this 'no hug policy' is Ms. H's...I'm thinking none.

Peglem, yes, definately it has something to do with some agenda I'm not being let in on...or...they are trying to tell me and I'm not getting. What they're doing is cruel to him, and they totally need to do as you said, tell him explicitly and matter of factly. If adults feel uncomfortable doing so, they need to work on that, Vince shouldn't have to work around their uptightness - even if he could. And, here's a good one, aparantly Vince has picked up on stuff from them even I didn't, and has already told his aide right in front of me and his case manager, "Don't worry, I don't get puberties with you. I only get puberties with Ms. G, lots and lots and lots of puberties, oh boy!". I thought that was friggin hysterical. I said, "well, did you tell her that?" and he said, "no way, that's private". So, he is getting it....albeit saying it in a room full of people isn't quite as private as I'm shooting for, at least he's not saying it directly to the staff.

I mean geez, let's create a 'policy' to protect the staff from my diseased perverted son so he can feel just a little more unliked, unwanted and unhuman....no hugs for you ya little perv, my sagging breasts and wrinked arse might give you a boner, and that would make me feel sooo violated!

I really really tried to understand it from their side. But the more I think about it, the more I think the staff ought to take 1/10th of a hit of ecstacy before school if their that uptight. The more I think about it, the more I DON'T understand this, clean back to the beginning of all this when he had to go cry/self comfort under a table, alone. Good plan. More alone time for an autistic.

Thank you, for making me feel sane again.

[peglem]

I don't think they (could be wrong about this) are worried about him doing anything inappropriate with them. But, if Vince has poor impulse control, what will happen down the road when he starts getting those very strong male sexual impulses? He could get in a LOT of trouble down the road, if this isn't addressed. And, whether he intends to cause harm or not, his acting on those impulses will create innocent victims. I don't know the solution. But, it looks like they are just teaching him that it is wrong to do x, y and z, without giving him any context. So, do you have a plan for what you'd like them to do? I'd come up with some ideas before the meeting.

[Keggy]

Oh dear, I didn't realize you didn't understand why there was a no hug policy... and I assume its the same for the rest of the kids... if not you got a problem.

It certainly isn't because your child dosn't deserve a hug, or he is sick or whatever else you mentioned.

Maybe its where I live, but it is never a good idea to be hugging children when you work with them professionally. Its a boundary issue. WIth all the predators out there who know how to take it to the next step... it keeps them from even taking that first step to physical contact. This is the number one reason too have this policy. DO you realize how many children (boys especially) are molested? DO you know how these molesters start? Have you ever read about Nambla? In every place I work or involved in, it is crystal clear that we can not hug children. Pretty hard to accomplish when they are young, sweet etc.. but it has to stop at an early age. At my dd camp the counselors (like her) were allowed to hug, where the adults were not. Not sure how good an idea that was, but ... still the adults are not allowed to hug. They are opening themselves up to accusations, lawsuits etc by doing so.

there are more reasons besides this.. but.. I have no reading glasses and this is getting painful.

[lisa6wks]

Mili,
Keggy is right. As a teacher, we are basically told to have "no touch policy" even in elementary school. And when we do break that rule, we put ourselves at risk for a lawsuit if someone should so choose. That being said though, I don't see why you couldn't put in his accomodations that Vince needs some sort of physical contact to assure him that he is accepted and valued. Especially that pinky thing! For crying out loud, its not like that could every be misconstrued. Maybe someone could squeeze his hand and that could be his "hand hug"? I don't blame him for being upset and I do think his teacher is taking this to extremes. There has to be a way to give Vince what he needs and keep everyone else out of trouble. It is just going to take a little imagination.

Lisa

[milivica]

Sorry I'm posting so short on time....Keg and Lisa, he's been treated one way by his aide for four years. When he cries, he puts his head on her knee and gets his back patted, or, puts his head on her shoulder and cries on it. He gets hugs throughout the day depending on the day. Now, all this has been taken away in one day, like boom you're 10 now so no more physical contact. This needs to be a PROCESS, where we consider what he's getting from the physical contact, and replace it appropriately. Again, I'm rushed, but imagine your husband saying 'no more sex, but I'll give ya a wedgie every night'.

They mentioned his age, I'm sick of that honestly, I mean if we're going to talk about age let's talk about developmental age. It needs to be a transition we work on and help Vince through. Not a illogical cut off. October 17th at 11:15 am and hence forward, no more hugs or crying on laps or shoulders or pinky shakes so sayeth his majestrate, so sayeth all.

As for being molested, Vince made a stink about it 2 years ago when a teacher touched his elbow or something, he let the teacher, the staff, me, and pretty much everyone in Wisconsin know he was not comfortable with that. Not saying he is exempt or too verbal to be molested, just reeeally don't worry about that for him anymore. I honestly fear more for Carmen in that area, Vince is no slave to pleasing adults what so ever.

And also, since their new 'policy' he's glomming onto everything that moves, and perseverating on this topic all night, all weekend, all the time. This is a kid that rarely wants physical contact, only when he's upset...now it's like a test or control thing with him. He can't get enough hugs ever since being 'banned' from them.

I shouldn't bear an aftermath of school actions...I'm ready to tell school either start hugging the kid again, or I'm not giving him the strattera and sending him to bed late and see how they like bearing the aftermath of what I do at home. Not that I'd do that, likewise, I just want to be a part of this decision that effects him at school and home, and think I should have been. Initially I only asked to be a part of the aide who is uncomfortable telling him matter of factly why she doesn't want him to touch her anymore, but seeing as that's going to take yet 10 more days, I feel like they're playing games, feeding her what to say, now I'm suspicious and very concerned.

Ok, Spec. Needs. Boy Scouts tonight...gotta fly!

[lisa6wks]

Ok, I see your point and Vince's point and I kinda see their point, but why does it have to take ten days? That doesn't make a lot of sense. In the meantime you all have to suffer trying to figure out exactly what is going on and poor Vince is left perserverating on this issue.

I'm sorry

Lisa

[milivica]

Lisa, yes I find the 10 days (minimum) to simply hear the aide tell Vince what her comfort zone is, suspicious. I suspect his NEW case manager initiated this, and the aide is trying to comply. She strikes me as a very rigid old fashion woman who thinks all new concepts are 'voodoo'. Hopefully, I'm wrong. Again, this is about a sudden drastic change in Vincent's school life that is effecting every facet of school (and home!). I forget if I said this already, but when he tried to cry on his aide's shoulder on a bus ride home she said "you can't cry on my arm, or it'll ruin the sleeve of my jacket". She's been his aide for 4 years, she's never said anything remotely like that. And I don't believe she meant it, but might have been struggling for an excuse under direction from the new case manager. Anyhow, it's unfair for him to have her treating him like a second mother for four years, then overnight boom, not even crying on an arm is acceptable contact??? Bad enough he's freaked out he'll be going to middle school next year. Which also makes me wonder if they think pushing him away will help him with the transition...which also makes no sense to me. He's insecure, so let's take away even more security.

So, what ever is going on, well, I ought to know what's going on. Tell me the real story. I disagree about the hugs issue, and nothing will make me agree. But if that's school policy (for ALL the kids) I will back it up and work with Vince at home to understand it. If he is making her uncomfortable with inappropriate behavior, I totally think enough of her that I'll back that us as well. But, give him (and me) a logical matter of fact reasonable explanation. Not just 'poof' no more touching of any kind...yet he sees other kids getting from her what he did, up until a couple weeks ago.

I actually won't know what to think EXACTLY, until I hear what everyone has to say. I'm just sort of in the dark, and dealing with a kid that is making me nuts perseverating and feeling really rejected...even saying he's too ugly so that's why she won't hug him anymore. I mean c'mon, I'll come in any day any time and they want me to wait another 10 days minimun??? Not right, not cool, something stinks. I just want to clear this up without a lot of hoopla, but aparantly, I have to make a fuss. I really don't want to, cause I feel like crap when I walk down the halls feeling like a pain in the arse. I like all the staff, don't know his new case worker too well yet...but anyhow. I'm glad to hear a teacher's opinions and ideas...I know sometimes I don't look at it from their side, and I want to! I hope you know agreeing with me is not important, I like to hear your honest view as a teacher. Keg never agrees with me, and I still honor her with my perfect wonderful humble modest friendship :p .

[Isabelle]

We had same problem for the adult autistics living in a group home, more exactly "no touch, no hug, no kiss...no loving". The good caregivers objected, these are disabled men with the mind of a child and they need that physical contact for reassurance.

[Mother's Heart]

Mili, I just don't know what to say.

so, I guess I will just give you a nice safe cyber hug:

(((((((((((((((((MILI)))))))))))))))

one for Vince too...wish I could give him a real one.

(((((((((((((((((((((((Vincent)))))))))))))))))))) )))))


hoping and praying for a good outcome to all of this,
cj

[AKF]

Wow, this is complicated!!

It could be that there is a no hug policy to protect children from molesters and adults from false accusation. Or it could be that as Vince gets older, hugs can be misinterpreted and they don't want him to be accused of harrasment later on, so they try to teach him not to hug now. ( Better to teach appropriate hugging, in my opinion) Either way, they should have discussed it with you before and made their intentions clear so you could help Vince deal with it. And it shouldn't take 10 days to discuss it when he is so obviously having problems.

Next time they call you to come in and talk about a problem, how would they like it if you told them you'd be there in 10 days to discuss it and they had to deal with him until then!!!!

[Kristen (ColeysMom)]

I saw this on the morning news and just couldn't believe it:
http://www.comcast.net/news/strange/index.jsp?cat=STRANGE&fn=/2006/10/18/501446.html&cvqh=itn_schooltag

Although they don't mention it in this particular print report they did say on TV that the ban was partially due to inappropriate touching.

When I saw it I thought immediately of this conversation. And by no means am I trying to say that the teachers are correct, I just can't believe how complicated everything is getting.

Certainly Vince does need to learn to touch appropriately, but has he ever given them cause to think he wasn't? And at what point does this become neglect? And who needs the 'therapy' here Vince or the teachers, if we've got our facts straight, seems like this is all about some adults fear...I just don't get it...

I gotta search for another story too...don't know if I'm remembering it wrong, but wasn't it the USSR after the war that had a whole slew of 'disturbed' children on their hands because they basicaly got no affection? What the **** is the breakig point?

This whole thing has me really PO'd!

KJ

[MaryEvelyn]

At Rita's school they can only play shadow tag (you are it if they step on your shadow) No one can touch any one because they where hitting eachother.

[Braindrain]

I just found the same article as ColeysMom:

http://www.msnbc.msn.com/id/15316912/

How are kids going to learn social skills when the schools won't even let
them interact with each other?:confused::mad: It's one thing to say
that they can't have physical contact with teachers, but no physical
contact with each other? How do they enforce this rule? If a child is
emotionally isolated to begin with, this is just going to make things a
lot worse! JMO

[lisa6wks]

Mili,
I love reading your posts, they are always so interesting. I know I don't have to agree with you :) But I am kind of torn on this issue. I was trying to see it from the teacher's point of view, but I am heartbroken thinking of Vince not understanding why all of a sudden important people don't "love" him any more :( I have to say, in my class, all of my children get hugs, from all of us. You have to, they need it and they deserve it. I don't really think anyone who knew our students would ever tell us not to. However, I do at times teach about personal space and I do limit the length of hugs sometimes, especially when the kids are getting silly!

It really is a shame that we have gotten to this place in our society, that a friendly pat on the shoulder or a hug for a sad child are looked at like they are perversions. Oh, I thought of something, maybe you could try asking the aide if it would be ok for Vince to give her a sideways hug. Sometimes people will allow those when they won't allow front on hugs.

Take care,
Lisa

[cckids]

Mili,
I feel for you and I can understand where you ae coming from since he has so long lived witht he comfort of hugs and touch.. Our schools try to discourage it as much as possible and it is the same way at my work. Patients are allowed no physical contact. Staff is to limit to "therpeutic touch". If a depressed person (kid) cries, rubbing there back is ok, but holding them or giving hugs may be frowned upon. Some kids thrive off that touch though. We had one boy approaching staff repeatedly asking for hugs and when told no would scream like someone stabbed him "I want my mommy." His behavior plan was written allowing 1 hug from a staff person every 2 hours, but he would lose that hug if he had more than 1 time out. Eventually the hug thing became a non-important issue.
We've also used a pressure vest with some of the autistic kids who need that tight squeeze.

[milivica]

I TOTALLY HAVE TO READ ALL THIS TOMORROW! I'M RUNNING TOO FAR BEHIND. And fyi....I want you all to know that every day after school, the students (espcecially the younger ones) line up for a nice big HUG from the teacher one by one, as they leave. You will hear teachers even say, "hey, what about my hug?" if the child forgets. The children are never forced to hug.

Ok, that being said...today was like me trying to get through the Great Wall of China with a teaspoon. I wrote this to school...hope it makes sense to you all:

***XX, as I said this morning in the hall, and this afternoon, it is my understanding since this is a public school, by law I can come and observe my son. You insisted that I first give you notice and set appointments, and I said I was not comfortable with that. You said "Ok" and walked to the office. I left (although I was not obligated to since your review had nothing to do with me observing Vincent) and returned hours later, at 1:50pm. I was then told you had said I could not observe my son by MS X, and that I needed to give you notice first.

MS X said she did not know the laws regarding my observing my son. I reitterated them. I continued waiting. The assistant principal was called, then the principal. Neither were available. I recited the name and phone number of Vincent's State Case Manager to reference the law, no one wished to check.

Then I was told the reason I could not observe was not lack of notification, but because for me to observe Vince would violate the privacy of another child in the room. I checked this issue tonight, and that is absolutely untrue.

Finally MS Y who also said she did not know what the law says about parent observation of their child, allowed me to observe.

Again, I am not violating the privacy of any kids in the room with Vincent. Actually my daughter has an IEP, is 'LD' and is taught part time at school by a mom (who is not a teacher) and I've never heard of privacy being an issue or school policy for her when they are doing far more than observing, and are in direct contact tutoring her. I'd just be sitting in the same breathing space as any other kids, not interacting with them let alone teaching them. Your comments today, about 'the whooooole floor falling out' for the child who couldn't come back to the room cause I was there...honestly I'm so tired of feeling guilty, you can serve it up but I'm not biting. He could have come back in, you decided he would not. And that's your choice. By isolating Vince from other students when I am there, that does not allow me to see Vince in his normal school setting.

Now, as I type and reread this, trying real hard not to come across as unreasonable, I'm realizing something. I'm embarrassed to be so slow, but now I get it. No way all that staff doesn't know if I'm allowed to observe my son at a public school. Of course you all know the law regarding parent observation. Especially MS X and most especially MS Y. I really don't have energy for games. So here's what I will do - observe my son at school, try to work with school not against it. Continue to side with you and staff at all times in front of Vincent, try really hard to grasp your thoughts and reasoning knowing working in special ed is your expertise.

Here's what I cannot do...force you to treat me in a welcoming way, like I'm not some sticky muck you can't get off your shoe. I can't stop anyone from treating me as an unwanted intruder. And while I cannot prevent you altering Vincent's school setting, I can inform you that putting him in a different room while I observe or removing classmate(s) to another room, by doing so you are preventing my ability to see him in his school setting.

I love the staff at school, and have many time commented that his full time aide should be nominated for Sainthood. But I have a sense of alarm after today. If things are not being done appropriately, let's ALL get things on track. I have no interest what so ever in finger pointing let alone legal action, etc etc. I am eager to grasp my son's educational life. Want to understand it, and be a part of IEP team decisions or at least understand how the decisions effect my son. I would like to move forward now, try and chalk it up to a bad day, and not have it repeated. I hope you will respect my rights as his parent, I hope the rest of the staff will, but that decision is not mine.

With the little time I spent there today, less than 1/2 hour, found out he is not even in his own class at all due to his behavior. I didn't know that. And just found out is totally disrespectful to the staff, which I didn't know (ie. name calling to adults). He also seemed truely unable to have an organized prioritized thought process. With his behavior as it looked today, I don't see how school will ever be more than a glorified babysitting service. That is not fair to him, and not fair to the adults who I know try to share and teach so much to him. I saw nothing negative from staff, can't imagine that I would, and wasn't observing them anyway.

So then, I got an IEP date for next week. Then I wrote this:

Great, I can make it then. I don't know that everything can be covered in an hour of course, but it's a great start.

I'll let his state case coordinator know, his senior autism consultant, and a friend who is fantastic and very experienced with IEP's (the leader of the local Special Olympics, Special Needs Girl and Boy Scouts). I don't know if all three can make it, but will invite them. Could I please have copies of his current IEP. I'll send a copy to his RDI consultant who was interested. She is in Illinois, so I doubt she can attend. And copies to the people who will attend.

I will bring a tape recorder, to permit my husband to hear everything since he cannot be there....I realize I could just bring it, that is my right, but don't want anyone to feel surprised. One of my intentions, after what little I saw today, is empower staff more and Vincent less. I was shocked and embarrassed on a personal level, that he is calling staff names (ie. moron). If you agree with that, I really need ways in which I can support school even at home (ie. if he won't do his work there, he can do it here).

I almost feel like there was noncompliance from him that I saw, that was more 'typical' than asd related. I really need staff input on this, but we can discuss it more at the IEP.

Thank You,

Autisticmoose...if you are reading this, do not try to total the X's and Y's, or the MS, IEP's, RDI, or the 1/2 or any other potentially numerically related variable, hee hee.

If there are any teachers reading this (ehem Lisa) I'd be especially interested in hearing this from the teacher's point of view. It's not easy for me to be told I'm wrong or unreasonable, but I'll tell ya, I really need to be able to understand their point of view, it just works better for everyone I would think. I'm still greatful for the time someone mentioned that teachers are expected to stay after school for IEP's like it was nothing, and really, that is their personal time...I never looked at it as an expectation again, and was embarrassed and apologized to the staff for all the times I had. If you're too shy to talk to me point blank, just call yourself Lisa5weeks so I don't know who you are, lol

[Kristen (ColeysMom)]

Wow Mili...I really am at a loss here..I just sit here shaking my head at how far this has gone...seems dramatic or something...not on your part. I just don't get how a little change in hug policy (and I understand that it's a discriminatory one) has exploded into this...I am truely baffled!

And I am really impressed with how you are handling it, because I'm ready to go down there and call them all morons too! Regardless of their intentions and reasons, they have to know that treating one person differently (NT or not) is going to cause problems. There is NO way for them to know how anyone (NT or not) will react to that...what they are doing is confusing at a bare minimum...

Poor Vince, I'll give him all the hugs he wants! But I'm sure he really just wants them from his teachers and he's now hurt and trying hard to let them know.

As for the noncompliance stuff...waaaaaaaaa! I wish I had a clue, please keep us posted, I hope you make headway here...I'm at my wits end...not saying Coley & Vince are exactly the same, but I haven't the foggiest idea on this! What am I going to do if I can't get this kid to eat, use the toilet, cooporate with dressing, etc before the baby comes...and (not that it really matters) but what was the 'trigger' the break in school or the break in routine from stupid intolerance challenge or the pollution itself...I just don't know how to react, getting more stern seems to be making it a harder fight...

KJ

[milivica]

cckids...I'm sure it would be a nonimportant issue if they'd hug him as needed....especially if they initiated, he'd be like "ew, no thanks".
lisa, I'm glad you can see my side, I'd like to know areas where you think I'm not asking for something reasonable (or legal!) from his teachers. Really, I just want to understand why the sudden change of no hugs (no contact actually) in plain matter of fact simple english. And want to be a part of these decisions...like no class time with typical kids what so ever - wow - that was sure a news flash!

Braindrain, MaryEv, KJ...this year they did start a no tag policy on the playground. It applies to all kids, and has to do with touching and really rough behavior hurting other kids.

(sometimes I'm ready to move to the Amazon and run around naked with a leaf and some beads on for pete sakes)

CJ, 'safe' cyber hug....baawawaaawa! Gee, I feel so violated, hey everyone...I dunno if I feel safe alone on a thread with CJ please protect me. Think I should sue JL? That's how ridiculous some folks are, and that's why I often simpathize with schools having to implement so many overkill policies. Heck I don't want my school sued either.

Isabelle, some people have 'winning a lawsuit' at the top of their priority list, I swear. Really ruins it for so many others. I remeber once hearing a long time ago, that if you create a frivolous law suit and get caught, you'll have to repay all court costs, etc.... Wonder what ever happened to that? There needs to be some accountability and liability to the person doing the accusing.

Ok, well, gotta shower and primp and look like a nice clean well groomed citizen, I'll be observing Vince again today. This time dh is coming! He got home early.

[milivica]

Wow Mili...I really am at a loss here..I just sit here shaking my head at how far this has gone...

<snip>

...I just don't know how to react, getting more stern seems to be making it a harder fight...

KJ

Me too...seemed to be such a workable issue at first.

I hear ya about not knowing how to react. I don't want Vince to comply with a storm brewing inside so he winds up suicidal or so angry he goes on a killing rampage. I can MAKE him comply, but I'd like him to enjoy it for the same reasons Carmen does. Obedience and manners and compliance without understanding is nothing...well it's harmful I think. Am I being too soft? Too firm? Is what I'm seeing him being a noncompliant brat or is there all that deep psychological stuff attached?

There must have been an art project going on at school yesterday. I saw the school psychologist (who I totally love) walking to her office with a real long stick. I said something like, "finally, good old fashion discipline in the schools!" and we laughed.

[GinaMarie]

HI Mili,
For those who CANT make it in person for the IEP maybe they CAN do it by teleconference (telephone). I've had IEP's where we had some of the people on the phone thru a speaker where everyone could hear them. Maybe your RDI consultant and others can join by phone. Then you can have more support.
HUGS
Gina Marie

[Kristen (ColeysMom)]

I'm glad you still have your sense of humor Mili!

And I can't help being so sad for these kids. I don't want to go off on a tangent, and I certainly don't want to hyjack your thread, but I can't help having one thought bang around in my head during all this...

The behavior of adolencents these days. I'm pretty sure a lot of adults are apaulled by it...you hear about BJ parties and similar stuff happening on public school buses...and I just can't balance that with this no touch tag policy.

I'm sorry, but what ever happened to teaching kids appropriate touching? I mean this isn't a concept that just comes threw amosis or something...for generations Moms & Dads, teachers, friends, and family members have taught children the boundaries of appropriate behavior...is it me?

And I know this isn't the exact same vein, but am I missing something here...wouldn't it make more sense to TEACH appropriate hugging????? UGH!

Poor Vince, I think I need a hug now!

KJ

[Kristen (ColeysMom)]

You know what, I think I just realized why this has me bugging out so much...

This is the EASY way out! I know there are teachers & therapists here, and I'm probably setting myself up for a good tounge lashing...this is what my husband does when he is too tired to do the right thing. He does the easy thing! And he hides things from Coley so that he won't have to say this isn't a play thing, because on the other end of the spectrum when Coley sees something and asks DH won't say no...I guess I should be glad that DH knows better than to let COley have a sharp steak knife or something...

But, he just doesn't think about the correct 'parenting' thing, he thinks only about how to get out of the situation the fastest so he can go back to whatever it was that he was doing...

It took us FOREVER to get rid of Coley's binky because when he was having a ttemper tantrum DH would solve it with the damn binky versus helping Coley through it or waiting it out. And he gives in like that all the time! I tell him CONSTANTLY that he is making my job harder by giving in, but all he can see is that the problem is solved in that second. So for him it works, but for Coley it created more confusion!

It's easier for the teachers to just take away the hugs & the touching than it is for them set the boundaries and stick to them, particularly when they are being pushed. And then they wonder why there is so much confusion around touching...now throw some completely inappropriate media imagery into the mix...Christ! no wonder the kids act the way they do, the only place they are getting any consistent information is from music videos!

KJ

[lisa6wks]

Very funny Mili :)
I can see nothing in what you wrote that should put the back up of any good teacher. I thought the fact that you were concerned about Vince's behavior and that you really wanted to work with the staff were very positive comments to make. If I received what you wrote, I would want to work with you, you sound like a very concerned and down to earth parent. In my opinion, that's the best kind to work with. That being said, I don't just let parents come walking into my classroom the way you wanted to walk into Vince's. The reasons for this are: I have kids who want attention from any stranger that comes in the room, I have kids who take the opportunity to do things they are not allowed to when they think I or my staff are distracted and you wouldn't be seeing a true picture of what goes on in my class, the children are just way too distracted by strangers and we can't get anything constructive done. Also, many parents want to come in and talk to you and monopolize your time, although I realize that is not what you had in mind. Now if there was a way for a parent to observe the class without the kids seeing them, I would be much more comfortable with that. Does that make sense?

Also, when I read the list of people you would be bring to the IEP meeting, I have to admit I was impressed for you, but for some educators, a list of folks like that is like a big red sign saying "warning, there is danger here". However if they have been to other IEP meetings with you before, and you brought this many people, AND if you are as nice as you seem to be on here :) then I doubt that this would make them nervous.

Also it is good to let them know you will be tape recording because usually if you are recording, they want to be recording as well and this gives them time to get it set up.

I also like the fact that you see that Vince's behavior might be attributed to plain old rotten kidness and not to autism. Just knowing a parent is willing to see all sides the way you do is enough to want to make me really want to work with a parent.

Lisa (6weeks has sentimental value, so I wouldn't change it :)

[milivica]

GOOD news...first I really enjoyed reading the posts. Big time. Second, the principal suggested coffee between the asst. prin. (who was Vincent's first case manager in EC and Kindergarten and who I value greatly). I was no way going to turn down an invitiation for communication. She invited another woman who's known Vince for 6 years now in school. I was totally honest, they were totally honest. I think we can move forward now in the direction I wanted to. WHEW!

I'd love to share everything we said...it was like a 2+ hour coffee 'chat' so I can't, but, I'd say in a nut shell, we agree the touch/hug issue needs to be a process not an instant change. We agree the fact he is now unable to do things he could do THREE YEARS AGO is alarming, and unacceptable. None of us understand why he was starting to participate in class UNaided, and now spends no time in class even with an aide (due to his behavior).

I asked for and will get academic worksheets he is currently doing in the beginning of a folder, worksheets that represent what a school years worth of 'typical' progress, and all the steps/worksheets inbetween. I will continue to observe, the asst. Prin. asked if she could observe with me, I said GREAT! Might make the teacher more comfy, and she will see things I won't too. I asked and she agreed to ask the staff I observe, to observe ME working with Vince at school...part of the reason I want to observe besides seeing his behavior, is to emulate their work/teaching style at home. I can't know if I'm doing that. Not looking forward to having to take what I've dished!! Hee hee.

So so much was discussed, the definately the largest issue, was someway, somehow, Vince must submit to authority. I don't want him to get a chip on his shoulder or resentment to build, the the older and bigger he gets, the less 'cute' his noncompliance is. They ask him to put a book away, and it's "why do I have to do that". I asked Vince the other day, "Does your teacher try to be mean to you like I saw you doing her?" and his first response was "yes, she makes me do math, math, math!". Ok. Wow. I keep forgetting what it felt like, to feel like that. We agreed that no matter what, he is going to have to 'release control' and 'submit' or 'let go' of that thing I can't describe, that makes him think no one has any right, he has all the rights....I hope that makes sense. I told them I do not care if I have to sit at a table with him till 6pm after school, do homework with him all weekend...what ever it takes, he needs to get done to him what ever they do to kids at boot camp to break his errogance (but not break his spirit). And I told them I was finally ready to see him have hurt feelings, in order to grow, and feel that is something that has been impeeding him bigtime, my fear of him feeling heartache. My fear of him looking at me tearfully and thinking I don't care how he feels.

Ok, the more I ramble the less sense this will make.

All I know is this...a few weeks back, when I asked why he continually does exactly what I have just asked him not to, he said "My brain thinks F-U, I don't have to do what mom and dad wants, I'm gonna do what I want" and pretty much has done so for the last 10 years (he is 10 btw) well, it's time to love him enough to let him go and make his own mistakes, let him fly while I still have a net under him...know what I mean?

See, I've never been through the process of raising a child. But I have a sense, that it's best for him now, to begin to raise himself. Be accountable, bear consequences...now I don't mean hand him a beer and say "you decide". But, it was freakin hilarious...I got him some fries tonight, as he tried to be casual about putting some salt on them (I usually say no) I said, "Vince, you're going to be 11 next month, you're old enough to decide if, and how much salt you use". He kind of got uneasy, "you can't do that! I'll use too much and get high blood pressure!" (lol) So I said, "well, that's up to you". He put the salt down, finished his fries...that's all good and fine...the part I don't understand is why he then proceeded while washing his hands after eating, to stick his head in the sink and wash his hair too, and come out looking like a mutated santa clause from not rinsing enough out.

And for once I didn't ask.

:D

I'm am POOPED! Pooped from all the goings on today, pooped from being his everything all the time. Time to let go a little. You guys are all wonderful, for posting and helping me sort through this. I really appreciate today's interaction with my school, and hope we move forward together in Vincent's best interests.

Mili

[froggy]

Wow, what a dilemma that started out as! Glad you got some resolution and got to hear each other and communicate. I have to tell you my son sounds an awful lot like Vince in his 'attitude', and I've heard tell that is common in children with autism, not cause they're trying to be obnoxious, but because they really aren't understanding why they should do as they're told-they don't get that things might go more smoothly for them if they cooperate. That's the M-A relationship(RDI speak;) ) apparently I failed the part where he wants to do things just to please me or others. Josh is completely unfazed about not pleasing people, he wants to do what he wants. The more we say we're gonna straighten his attitude up, the more he fights it, it is a vicious cycle and I hope the RDI can get us out of it. Hope you have a good weekend in this FREEZING weather!:)

[milivica]

OHhhhh yes, the M-A relationship. Exactly exactly exactly.

His consultant emailed me, she offered to do the conference call thing if the time/date is open, she'll do it. I think that's really important. I mean, I don't want to make nt interventions for asd behavior or visa versa....if that makes sense.

However, Vince has elements about his behavior that is just plain errogant, and he needs a wake up call (several dozen). He feels like a BIG fish in a little pond, and knows what to do to get out of work, get his way, etc etc. He is now doing academics that are less advanced than he was doing THREE YEARS ago. Calling teachers names. I mean, he needs to 'feel' what a little (but competent) guppy he is in a big pond with big fish...know what I mean?

Vince does know what I want, does know what teachers want. He actively decides "I don't have to do what you want me to do, I'm going to do what I want". So, he is not in the category of child that really doesn't know what your expectations are. And, when he is in trouble, he is an NT Choirboy...suddenly he knows every social rule he needs to follow, he's mr. goody two shoes. Dunno if he understands it intrinsically, but he sure has memorized the motions of 'good behavior'.

But besides the M-A dilema, he has a completely chaotic mind, unable to select what is priority. The consultant said I am that way too, either completely chaotic or static. Nothing in between. She is working with me at the moment, to identify priority. Which, I can do, but it all gets mixed up and I wind up going mentally in a million different directions. It's really cool listening to stuff in RDI about the chaotic mind and inability to identify or execute priority...cause that's like exactly what ADD is, ya know? Add to that having ants in your pants, then it's ADHD.

So take that DSM-IV, the MiliMedical definition of ADHD.

One of my current personal objectives about all this with Vince and school, is to resist total panic, resist seeing Vince at 50 as he is now. I'm trying!

Mili

[lisa6wks]

Mili,
My middle child, no longer a child, has ADD and probably has some autistic characteristics. Anywho, she didn't always do things just because she wanted to please someone either. With her, I really had to do a lot of consequences. And they weren't always what people think of as standard consequences for inappropriate behavior. I remember once she wouldn't wear boots to school when it was snowing. I tried all the standards about getting cold, wet feet and all, she could have cared less, all she cared about was that she didn't like the boots and she wasn't wearing them. So I told her that if she didn't wear the boots, I would take away all of her dresses and she would have to wear jeans to school all week :eek:

Lol, that did it. She wore the boots. However as she got older, she began to "get it" as to why people did things like wear boots in the snow. Her solution to that (now remember this was in her late teens by now) was to get boots that she really liked and made her comfortable. Easy peasy!

My point, and I do have one, I think, is that sometimes you have to go ahead and hurt the feelings. If you see there is a greater good in the long run, then they will just have to deal. And remember Vince didn't have the same upbringing that you had. He had wonderful, understanding you for a mother. So the things that you feel "for" him may not really be the way he will feel. His unhappy feelings are mitigated by the knowledge of the supportive home he comes from. I hope this makes sense.

Lisa

[MaryEvelyn]

Oh Milli this brought back so many memories about Kyle that I had forgotten. When he was 10 he went downhill so fast. I thought I was going to have to put him in a home because he was getting so bad about not listening and doing only what he wanted. I thought I had failed. I thought that it was something going on in school but what was going on was my baby was growing up. It was so hard I was supposed to be there to keep him from getting hurt but to let him grow up I had to let him make some decisions and than watch him face the consequences of those actions. It has been so hard but now he tells me when I need to back off LOL and just let him go " Mom I am 14 now, don't embarrass me." Good luck and big (((HUGS)))

[froggy]

I hear you on the 'knows the motions' part. J reverses every conditional statement we make and turns it on us..for instance "J, you need to get your math done and then you can have_____" It is always "no mom, give me ___ and then I'll do my math." He can be sooo rigid, but pull out a starburst candy and he's got it figured out, Mr. Compliance all the way. But I'm not about to feed 286 starburst a day to get him to get dressed, clean up his dishes, treat the cat nice, do his school work, etc- so there's discord among us-A LOT!! It is like Guty says in the intro to one of his books, he wants the kids to greet him not cause he's got an M&M for doing so, but because they are really glad to see him. I want J to do these things, cause he's supposed to, not cause he's figured out how to work the system (from such an unyielding angle).

[milivica]

>>> but pull out a starburst candy and he's got it figured out, Mr. Compliance all the way.

I hear ya!

>>>But I'm not about to feed 286 starburst a day to get him to get dressed, clean up his dishes, treat the cat nice, do his school work, etc-

I think Vince would say, "why not?" Well, either that or he'd say "ohhhh, but 285 would be ok". :rolleyes: :D

Mili

[Isabelle]

About wearing boots or not. I remember telling my kids to go out and stay there for a while and to tell US (us, grown ups) how to dress for the weather.
They will come back with "warm, still we need a sweater", "hot, t-shirt, shorts", "cold, coat", "Freeeeziiiing". No problems how to get dress for them.
Great fun to "assist" the grown ups :D

[lisa6wks]

Isabelle,
Not my child, lol, she could freeze her toes off and would still want to be in the shoes she thinks are "pretty". She has gotten a little better since she has gotten older, but she will still take style over function most times.

Lisa

[milivica]

Isabelle,
Not my child, lol, she could freeze her toes off and would still want to be in the shoes she thinks are "pretty". She has gotten a little better since she has gotten older, but she will still take style over function most times.

Lisa


OMG, Carmen is totally a style over function kid. But, thank goodness, when it comes to pain over comfort, she'll take comfort. I really tried to let her know, that all the 'bling' or what ever fashion is called these days is just like when a monkey puts a branch on his head and thinks it looks 'cool'. Cool is flexible, changes, not finite, and mostly to make other girls jealous cause boys could care less about your oversized Dora The Explorer bracelet.

As for me and boots...we got snow last night and I'm still in my flip flops. I'm in flip flops and bare feet as much as humanly possible. Shoes make me miserable. They feel aweful. I hate them. I had huge bell bottoms in school and many times was caught without shoes, even in the winter. I hate shoes. Too bad, cause some of them are so darn cute! So mine is a sensory thing or whatnot, not a fashion thing. I know flip flops look stupid in December. I just refuse to make myself feel miserable to blend...comfort over fashion for me!

[milivica]

IEP

BRING:
Tape recorder/tape/batteries
note pad
pen
copy of IEP
copy of schedules
extra folders to return

OFFER:
volunteer pt as aide to help me be on same academic page
to be supervised making sure to emmulate staff

OBJECTIVE:
If things are not being done appropriately, let's ALL get
things on track. I have no interest what so ever in finger
pointing let alone legal action, etc etc. I am eager to
grasp my son's educational life as well as you all do. I
Want to understand it, and be a part of IEP team decisions
or at least be informed of and understand the decisions
made that effect my son. I think they call that being
'in the loop'. Everyone's thoughts on that?

What will it take for his mind to just say 'Okay' when
asked a simple request such as picking up and putting
back something he dropped.

Tell staff the F-U story (without cussing).

Vince does know what I want, does know what teachers want.
He actively decides "I don't have to do what you want me
to do, I'm going to do what I want". So, he is not in the
category of child that really doesn't know what your
expectations are. However, with such a chaotic mind, and
so little practice at impulse control...I do not believe
it's as simple as typical noncomplaince. Does that make
sense, everyone agree? Other's thoughts?


TOPICS:
BEHAVIORAL:
'Behavior' is such a broad word. Can we narrow down the
biggest behavioral obstacles to work on?

For example, Vince to me acted like he's a big fish/small
pond,and needs to feel like the small (but compent) guppy
he is in a sea of experienced adults, teachers, mentors.
In what ways can we begin doing this?

What does he need to change from resistance and noncomplance
to 'okay' in his mind when adults make requests of him?
I'm thinking home and school, every area of his life -
like boot camp. Not the kind where his face is shouted in,
just the opposite. I am finally to a point as his parent,
that I CAN see him hurt, in order for him to grow.

I felt at school there was noncompliance from him that
I saw, that was more 'typical' than asd related honestly.
What do you all think?

Any chance of him spending time with the younger kids,
for reading or art, like last year? Chance to
feel competent is the purpose, plus, social time with
developmentally age appropriate peers. He just seems to
have no peer time, it's so isolating. Maybe for recess?
Can we verbalize the reasons this is so? I know there
is inappropriate behavior, but let's be speciffic. I know
last year he very much enjoyed playing with the younger
kids, than them with him. What does everyone think?

Section 504. From what I was told I'm under the impression
he spends virtually no time in regular ed. I'm not a huge
fan of section 504 being blanketed on all children. Can
we try and get him class time that will benefit him and
not impeed the learning of others. I recall in past years
other than second grade, he spend time in class unaided.

How did the whole 'hug policy' for Vince come about. How
was it turned into a no crying on lap or shoulder policy.
Leading to an high five only contanct. Tell Vincent's
interpretations about Ms. H's sleeve being more important
than his tears...I assume she was searching for a tangible
answer as to why he could not cry on her, I cannot believe
she'd really mean that. And it's very important to me she
is not made to feel badly or awkward about that. The hug
thing needs to be a PROCESS. It needs to be explained to
him matter of fact, honestly, and step by step. From what
I've been told so far, this all became an issue when he
said the word 'puberty' to Miss H. I have to say, I feel
the whole 'do not let Vince touch you' policy has felt to
me like he's being labeled a perverted deviate. He is not.
HOW is Ms. H. so 'uncomfortable' with him crying on her
sleeve? HOW did this whole thing evolve, and why was I
not allowed to talk with Ms. H. about it? I want the
truth, cause only that will make sense. Who was really
uncomfortable with Vince hugging?

Vince needs to have explained to him, his part in things
that change (such as hugs) that he doesn't like...when he
is a part of the change, such as the pinky shake. I'm never
cooth with him, I always tell him the truth - age
appropriate truth I mean.


ACADEMIC:
was adding with Mr. K. (second grade or third) a colum
three numbers, each three digits...able to carry over.
Such as 345+115+212, vertically.

Still not doing coins/money but was with Mr. K. (second
or third grade). Did know the amount of nickels, dimes,
quarters, in a dollar. Could count by 5, 10, 25 to 100.
Should we review old IEP's to see all the things he could
do, and now cannot? It's frightening. How did this happen?

Could tie shoes, not proficiently yet (with Mr. K.)
and now they are tied for him.

Is staff avoiding him having a fit, so he is becoming
sort of treated in ways to avoid him getting upset? I
understand doing that in ways that pertain to autism,
but not in a blanket way - which is easy to have happen
when you are familiar with a persons likes and dislikes.
I understand! I always find it eye opening when someone
who does not know 'vincent's rules' breaks one with him.
Often I'm very impressed with his ability to be flexible.
Equally as often, I'm not.

I'm still concerned about reading...seems to be very
slow to no increase in reading skills. Words he could
a few years ago, he stumbles over now.

What little time I observed, I was surprised at what
looked to me, to be a mind in total chaos. How did I miss
this seeing him at home? No prioritization or organization.
Like an epileptic thought process. With his behavior and
chaotic mind, as things stand now, I don't see how school
will ever be more than a glorified babysitting service. That
is not fair to him, and not fair to the adults who I know
try so hard to share and teach so much to him. How can we
get Vincent to try for staff...as hard as staff is trying
for Vincent? He could be the most fun and enjoyable kid in
the world to be around, and it's so sad and unfair to him
and staff his behavior and attitude prevent this. Does
everyone agree?

I don't want typical behavioral approaches for asd behaviors,
but I also do not want well thought out gentle approaches
for typical bratty noncomplaint attempts at manipulation.
I'd love to grasp all his behaviors all freudian style,
but I don't. Does he need some good old fashion intervention
any grandma of 10 could give us, or an autism specialist.
Or both. I think both.

I'd like nightly homework. An extension of what he is doing
currently at school. The math can be simular to Carmen's.
A step by step A-Z process. So I can see where he's at,
and see him making progress.

[lisa6wks]

Mili,
I think you must be one of the most generous biggest hearted person I know. For some reason, I think that this whole thing with Vince is a lot easier than it sounds. It sounds like Vince's main problem is non compliance. I don't mean to make that sound ABAish, but any kids are going to test adults, and not making Vince comply because he might get upset is definitely not doing him any good. He is getting mixed messages. At least this is how it is beginning to sound to me. I am going to think about this some more and will get back to you.

Lisa

[milivica]

GEE thanks for the compliments!

Maybe I should have put down the opening note to myself for the IEP:

first, thank everyone very much for coming. I feel uncomfortable
pulling so many people from their other obligations, and want them to
know I don't take that for granted, and appreciate all this.

And YOU may have been the person that taught me to appreciate teachers more...someone here was like "hey we don't get paid extra to stay after for IEP's, and parents like just expect that and don't realize it's our personal time away from our families" or something like that. So, I no longer think I was born with a God given right to an IEP anywhere, anytime, what ever works best for me me me. But I did :o

Here's something I posted on BT2:

I decided to give reading his IEP a whirl. In the past, it all seemed like gibberish...sounds so darn good on paper. Well, it took only an hour, I made several notes...the PROOF is in the IEP. He is not now able to do, what he could last year. And, according to the current IEP, he should have 1,000 something minutes of class time with his peers, he has zero....which, I can understand due to his CURRENT behaviors, but, why the heck wasn't I told as it gradually declined???

Anyhow, it'll have to get worked out. If I really thought, a different school was in his best interests, I might go for it. But I just think there was no communication, things really slipped away somehow. I hope together we can get it all no track. I'm kind of shocked, reading goals on his IEP that said they were 'met', when I know good and well he can't do them now.

But see Lisa6wks, the reason I'm not angry or whatnot (I mean, I'm not happy) but see, the minute I mentioned this to the asst. prin. (his first case manager) she was like, "Oh! Well that's not good." So no politics or pat answers or fake excuses. I appreciate that, so am taking for granted we are on 'the same side'. Suuuure makes things more pleasant all around!

It really is making me so sad though, that he is such a darn hysterical fun uniquely great guy to be around, but instead of being able to enjoy all the stuff that would make him one of the most popular guys in school, you want to run away. And you're right, I would have to say noncompliance is a huge biggie...or maybe I should say him thinking the noncompliance is ok is the biggie! Usually when kids are being a real stink, they know it. I'm not sure if he gets that. But at this point, I feel there's not a lot I 'care' if he gets when it comes to teachers telling him to do or not do something, obey! If you don't like it, remember they are the teacher, you are the student, YOU listen to THEM. If you have any worries they are not being right or fair, talk to me about it at home, but at school, do as you are told.

We had a situation today, I got a call from the asst. prin. at home. His teacher asked him to put this laminated anatomy chart away, it has the skeletal, vasular, organs, all those different things and cross sections of reproductive parts. Well, of course his 'victorian' case manager told him to put it away...but hey, if she said do it, DO IT. What's the problem? He said to her, "you are just thinking F U Vincent" and wouldn't put it away. Thank goodness he actually only said the letters. The asst prin explained how other kids were there, and they didn't want them to go home and perhaps give an impression school was allowing....I said "it doesn't matter why, the teacher asked him to put it away, he needs to put it away". Like I said, it's time Vince tried as hard as the staff. Ya know? Another thing, it's like he's so used to praticing noncompliance, it's HIS norm. I want compliance to become his norm. I get many reasons why he is like he is now, I'm sure I don't get them all. But I really see no reason any longer, why he can't give as much as the staff, and as his family too!!!

Poor Vince. He better get it together before I go thru the change or he'll be living in the shed with 9 rats and his Boy Scout lantern.

[Isabelle]

Formidable Mom, Mili.
Who among school authorities knows Vince the most?
I do not believe exists one.

At all events that word "noncompliance" irritates me the most and brings my teen rebellion to mind. Teacher are the models. Rolemodelling is important, cool, calm, soft voice explaining the situation worked for me and for my son and I am sure would work for Vince. If you see the teacher with the eyes of a child and the child see that his teacher, a person that suppose to TEACH you to grow and learn has a tantrum over a hug and make a big deal out of the request of that child to cry on her lap, shoulder, arm...wherever, she has let down that child and is not qualify to take that position of power. She has her very own serious "issues" to resolve.

At all events if Vince is too much of a problem for them do what many other parents has done homeschool Vince, get a tutor to work with him at home and half day at school in easy material that has no trouble dealing with and of course a chance to socialize even with a bit younger children. Or, get that volunteer job and be there for him if he feels like crying. Children that 'manipulate' are only sucessful if the adult allows that to happen.

Lisa, they tried and felt the cold, Canadian cold, I say nothing, they learned very quickly to check the weather.

[lisa6wks]

Well Isabelle,
I have one student who takes his shoes off on the bus every day, even when it snows. He doesn't like the cold, but it doesn't stop him from taking off his shoes on the bus. Someone needs to say to him, " I am sorry you don't understand, please put on your shoes because I say to since I don't want you to hurt yourself."

Mili,
I would so love to be a fly on the wall in Vince's class. There is something going on there that I can't get from your description because of course it is at least third hand. Has the school done a functional behavior analysis yet? It's that lovely ABC report. A being the antecedent, what happened before the behavior, B being the behavior, and C being what happend next, not necessarily the intended consequences, but what really happened. Did the other students laugh, did the teacher get angry, etc. If you have a whole list of these incidents and everyone (the IEP team) meets and discusses it you might get a better idea as to what is really going on in a non biased way. Has this been done yet?

Once you have that done and you think you know why it is happening, you can draw up a behavioral plan. And you can change the environment if need be. With the plan, it can be helpful in instances like this to bring Vince into it. Show him what is happening and maybe write up a contract with him. He may appreciate having his opinion asked for.

One caveat, I don't believe in teaching children to be completely compliant, this makes them passive and ripe for abuse. One of the reasons I really don't like the ABA method. However, a certain amount of compliance does make a student's life easier and many times safer. There is a fine line there and that's where I believe a it takes a good teacher to recognize when a student needs to have his/her say and when he/she needs to comply.

Lisa

[frogmama]

Well here is me crossing my fingers for you, and my toes, and my eyes (but he!!, that happens everytime I take my glasses off anyway...) that all went well today. You've got your act together, so I can't see it going any way but good. If I bought you a plane ticket would you come with me to Matthew's IEP?:D

[peglem]

so, Mili, how'd it go?

[Isabelle]

Oops! Lisa, I was talking about my NT kids, luckily my autistic kid followed them to some point, he usually would take a long time to use boots and later upset the teachers by throwing them out the taxi windows, buses or running and sending them over fences. Once being taken to the Zoo for umpth time he did it over the tiger's fence. They and I rescued boots from everywhere but this time forget it!


Yes, Mili, how did it go?

[milivica]

The IEP went well, but I've had a lump in my throat since it's been over. Either PMS, stress, or both. I wasn't going to post, but you all have been so there for me. I couldn't not post.

No one denied what I said, I got a teeny bit of time to talk at the end...but since they had an agenda (how do they have an agenda for an IEP I called? Know what I mean?) they did cover most of what I'd planned to. As I spoke at the end, people wrote furiously(fast not mad)...I plan to write a 'thank you' letter that expresses all the impressions I got from the meeting, like "so we agree his math skills currently are less than in second grade per his IEP...and we agreed in a 20 min observation he was able to attend 5 of it, the IEP states 1008 min per week in regular ed and he has -0- (now they're saying it's three hours)

I recorded the IEP, so that will be sooo much easier now to type what was said, and what there was no time to say...plus what we'd agreed such as home work. I'll post that here too of course.

The hugs issue will be handled by his therapist, who I really love, he is such a 'guy' but so professional. He is going to create a process that gradually weans him off hugs, but while doing so replaces the needs the hugs fill. I told the team I didn't agree with it, I think men should hug, hold hands, kiss hello like women...but would go along with it cause I realize we live in a totally repressed society that pays cable stations to see that kind of action right after church. Yeesh. I hoped they'd work with the uncomfortable staff being as they expect Vince to understand it should work both ways.

The therapist said the funniest thing today after the IEP. He reminded Vince that it was his turn to pick an activity and he was going to choose the arboretum...so Vince was like "I'm not going there I want to go fishing"....well eventually the therapist was like "well you're going dude" and Vince is like 'you can't take me, you can't take me down' and the therapist said "I may be wearing an argile sweater but I work out at the gym two times a week, let's go, I'll take you down, come on" And Vince who would usually dive at the chance was like a stone man typing on the puter...it was all I could do not to laugh my brains out. Mr. "I'm gonna take you dooooooown" duped by and oooold man of 30. HEe hee.

I took extra sleeping pill so if I post weird it's that, not drunk. Geez, I wish. Cripe I heard a Hendrix song come on when I was cleaning in the kitchen and it was all I could do not to roll some oregano in a post-it, light it an hope for the best. I'm just hurtin. Ya know? But it'll be all right.

So, I'm not quite me (after IEP stress) but want to at least post below a letter I wrote to his consultant. There was a slight problem after the IEP, things got 'ugly'. I'm guessing it's fixed now. But, I'm not sure. Think of the below as written by an adult on the spectrum (which I am).

Dear Amy,

Thank you again so much, for doing the conference call. I can't wait to see the papers you'll be sending (Ongoing Appraisal). I thought the IEP was ok, but, I called it to express my concerns, and was frustrated I got only the last 5 minutes to do that, especially after typing sort of an outline for myself of the things important to me to say. The good thing was, regardless of that frustration, the 'chaotic mind' topic and ongoing appraisal idea (I think) is about the most pivotal thing that could benefit Vince at school right now.

After the IEP, things got a little ugly.

I was trying to observe Vincent, when I was twice asked to come and talk about observing Vincent, and guidelines we will have to discuss, and so on...the reasons I couldn't observe him changed many times. First cause the aide was not comfortable - I said fine have staff with me. Then it was an issue of the privacy of other students being violated - I said fine he has so much 1:1 time I'll come only then. Then it was "well another student might enter the room" so I said regular moms in my neighborhood volunteer and TEACH my daughter the extra things she has in her day from her IEP...privacy don't seem to be an issue then and neither does a teaching certificate. I stressed I wasn't trying to spy or be a problem, that not to be picky but his IEP does state I should get a video tape of him achieving IEP goals every quarter ever since the beginning of 2005, and I've never gotten even one, so I have to observe.

So, the Principal got involved. She and I have a very bad past repore. She closes me in a room (my back was to the door so I didn't know it was closed) with her and another staff member and wants to flex with me (she refused to let me observe Vince for 2 years...first and second grade...I didn't know I was allowed to by law so I obeyed). Well Amy, I have to thank you so much, as well as the lady you gave my email to, I think it was April? Who gave me a paper written by an adult aspie, about aversion, and avoiding situations that are stressful...Amy, ordinarily, when boxed in like that I get loud and argue my point, and everyone gets me on so many topics and so far off track it's a disaster that I always wind up the villian in. It's like I don't realize I can leave, I just get all overwhelmed in every way in my head. This time I headed for the door, clearly and at a regular tone said "Move away from that door" and everything got black except the door and I left. I 'FELT' a bad scene about to happen. I have no idea why, guess I had a 'dynamic system' window. I still feel very shakey like I just got in a huge car accident or something like that, and this was close to 12 hours ago. I'm trying to block it out, cause my ongoing appraisal seems to be on the fritz, ya know? I went back later that day and had no problem observing.

It's hard to explain, but there's been so much emotion on the topic of Vince and autism and school and home too...well I'm sort of on the verge of tears, I don't know what's up with that cause I'm not sad per say. So, I'm going to have tomorrow be a priority of destressing, do nonautism things (that's a nice way of saying clean the house really good, hee hee). On Thursday, I'll be back on the ball, cause I want to thoroughly read some papers you posted on your RDI site.

Thank you,
Very much,
Lisa

[peglem]

I just don't understand this whole not being able to observe thing. In all my years of teaching, I can't imagine refusing to let a parent see what's going on in my classroom. Sometimes it WAS uncomfortable for me, because parents had accused me of things, which makes me feel like they already think I'm doing everything wrong. But, I also knew that I could explain why I was doing what I was doing. Sometimes I did make mistakes (hard as that is to believe:D ) but, was eager to identify mistakes and put things right. What are they trying to hide? I'm very uncomfortable with the fact that they won't let you observe- and its not even my child!

[lisa6wks]

Mili,
You did good. Take some deep breaths, this too shall pass.

Take care of yourself,
Lisa

[Laura P]

They have instituted this at Sierra's school too, and it took some time for her to get used to high-fives. And, to compensate (just my gut talking here) for the lost sensation of the hug, she began head butting and hitting, while smiling and being happy, which was very confusing. Sierra craves pressure, so the school started giving her sensory breaks to accommodate her needs.

I do understand the need, especially as our kids mature, to fade out the concept of physical attention as a reward or as an automatic response. But I am sad that the very thing the world accuses our kids of--not desiring physical or other contact with people--is being reinforced through policy that essentially is a CYA maneuver. Keggy--you're correct as well that we need to protect our kids from predators, but it is just so sad that another piece of childhood that we should be able to take for granted is being stripped away for "protection". I think as a culture we are alienating ourselves from one another, and not just the special-needs population will suffer.

[milivica]

I thought I already posted?? Where the heck did it go?

Peglem, I didn't know you were a teacher, that's awesome to know you and Lisa6wks can give me a teacher's perspective. And yup, not only is observation highly discouraged, I know of a parent that was banned (from my friend)...don't ask me how that happened, but she pulled her child from school finally. She had a lawyer and everything, what a mess.

Lisa, yup, deep breaths...it'll be ok. I'm really throwing ever lick of hope I still have into RDI. If it weren't for that, I would really be hopeless. It's going to turn out the way it's supposed to, as long as I keep doing all I can as his mom.

Laura, this thread is so long you might not have read...I have no problem with a no hug policy that would apply to the whole school, I have a problem with one day him being told 'no physical contact' other than a high five, he was also refused his attempt to put his head on a shoulder and cry. It needs to be a process, not a sudden cut off. And, in the IEP, what I assumed was true was finally said...it is their belief that he is getting something "sexually" from contact. Not so, cause when he gets wood he's the first to announce it. "I'm having puberties now".

Sighhhhhhhh

[Isabelle]

From the 1980s to 2006 the situation haven't change at all. Holly! Been there, done that! Cried rivers, so HUGE HUGS to you, Mili!

[peglem]

Lisa6weeks can probably give you more insight into the sped part of education. I was a regular ed teacher up to the end of last school year. I quit, for a variety of reasons, but I can certainly give you the perspective of a regular ed teacher dealing with inclusion. I think I was a bit better with this than most, because of Allie's issues. I can tell you that I have severe misgivings @ what the NCLB programs are doing to education, but that's not really relevant to this thread.

[lisa6wks]

Peglem,
I have those same reservations. I teach children with multiple disabilities and severe disorders.

Lisa

[milivica]

I'm ashamed to say, I'm not at all familiar with NCLB...other than it has to do with kids not being passed through school and graduating albeit unable to read.

Can you both (and anyone else) tell me the bad parts/good parts about NCLB for spec ed and reg ed students. In your opinions, not quoting legal stuff. Legal stuff versus how it is, is never the same anyhow.

I'd love to hear things from teacher and parent viewpoints. I think it's a great topic actually.

Mili

[lisa6wks]

Gosh Mili,
Don't be ashamed, I hardly understand it either. One of the things I do know is that it tries to bring all kids up to a certain standard which in my opinion goes against the whole idea of special education and causes problems with inclusion. No school or classroom wants children in it who's test scores will bring down the school's average. Another proble with it, is that the schools have to meet the standards but they are given no federal funding to do so. So the money has to come from somewhere else, which means some program at the school is going to lose it's monies.
Because of NCLB I had to be qualified as a Higly Qualified Teacher, which I am, but in order to be one, I have to be able to teach all subjects taught in all grades in elementary school. Which makes no sense, since I don't teach any of those skills. I teach functional daily living skills. Any academic skills I teach are usually in the PreK or Kindergarten level. This wouldn't be a problem except it it getting rid of some perfectly good special ed teacher who don't want to take all the extra classes necessary to become highly qualified, when they don't teach those skills in the first place. And they have to pay for the classes themselves.

Ergggh it's a mess!
Lisa

[peglem]

I found this link on the tourette's board- and I know Vince doesn't have tourettes, but look under the behavior section. Its got tons of really great information to help w/ home/school behaviors from a very practical standpoint. http://www.tourettesyndrome.net/

[milivica]

OMG, am I ever going to be doing a lot of reading. That site is GREAT.

I've read one section so far, it's helping me to type my thoughts better, for what I'm going to send to school, regarding the IEP we had. These are just immediate thoughts so I'll work on them and will type more...

What EVIDENCE BASED practices are currently being implemented, to prevent the escalation and reoccurance of behaviors impeeding Vincent's education?

I'd like copies of or references to the documentation/proven studies currently applicable to the practices currently being used.

We need a new FBA and/or modification of his current BIP using a variety of assessment tools and strategies that should include but not be limited to initial and ongoing consultation with his RDI consultant who was in attendance on his emergency IEP via confernce call. She uses current evidence based proven studies identifying function and modification of autism related behaviors that impeed education, none of which have previously been addressed by school.

[lisa6wks]

Ooooh Mili, that's really good!

Lisa

[milivica]

I copied great phrases from the site peglem listed above, and altered it to apply to Vince such as inserting his name and so on. Here's one I found on the www.wrightslaw.com site that I plan to print and carry on me:

Parents have a right to access to teachers, opportunities
to volunteer and participate in your child's class, and
to observe classroom activities.
(No Child Left Behind, page 39, 58-59, 80, 194-198)

because not only do they make me feel as uncomfortable as possible when I come to observe, and while I'm observing (although last time wasn't bad) they have refused to allow me to volunteer to participate in Vincent's class, which, consists currently of one kid. Vincent. They said other parents have wanted to and it is against their 'policy'. I didn't debate it, cause I didn't know I was entitled by law to do so. Now I do. And I will continue to use the one line I had hardwired into my brain at a Wright's Law conference....Federal Law trumps school policy every time.

However, I need to cool it with this for a little bit...cause I am entering that part of learning, where you learn just enough to realize how little you know, and how much more you need to learn, and feel totally overwhelmed by your own stupidity.

So I'm up for some humor or something...while I take a small break.

I'll be back on it by tomorrow night. Tuesday the latest.

Peglem, that really is a fantastic site. THANK YOU.

Mili

[milivica]

When your ready for a good cry, from the site Peglem gave:
http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

Find where it says:

Autism Every Day
Minutes: 13:20
Low | Medium | High
Copyright © Autism Speaks/NYCA, 2006. All rights reserved.

And click on the 13:20 minute movie.

Very emotional movie, very good, but very emotional.

[milivica]

Ooooh Mili, that's really good!

Lisa

Thank you!

I dunno where I snipped this from precisely, but I'm sure it's law from the Wright's Law site.

(i) Meeting the child’s needs that result from the
child’s disability to enable the child to be involved
in and progress in the general curriculum . . .

Which I will also put in my follow up letter from the IEP, this is critical point since he participates in NO general curriculum, and I have no clue how I'm going to get school to go along with what I want. And I won't know what I want, till I continue to read law, observe at school, and mush it all together in my brain....why oh why did I kill all those brain cells partying in the 70's!!! Who knew I'd need them in the future...I only planned to be a mother, which everyone knows is 'easy'.

Tonight Vince told me every couple of weeks he gets to have snack with his general curriculum class. But then he said, "well, not anymore really, cause my engine is too high...so yep, I decided I don't want to go anymore". That is Vince-talk for he wants to go but isn't being allowed. If you told Vince "I'm not letting Santa give you presents this year" he'd say "Yep, I think that's a good idea that Santa don't give presents". Sometimes, the more he wants something, the more he pretends he agrees with you when you say no...I was not at all like that, I was devastated over even the slightest change in plans so I don't quite understand him in that area. I assume it's a control thing. Or, maybe he cannot show his most vunerable feelings, that I definately was like as a kid. The more upset I was, the more I tried to act happy. I have no idea what that was...I just know feelings were something to be guarded at all costs. Never ever EVER show your real feelings. I could show happiness, but nothing else, cause it was PRIVATE. Plus, if you showed say anger, and expressed it...what would happen NEXT, the unpredictablity, was far more stressful than just stuffing everything.

Just mentioning all that, cause I always mention stuff that I think might let someone relate to their child or another. Also I'm mentioning it cause I'm off topic :o :D

[matika]

OMG Mili. Well forgive me, I have not read all 6 plus pages but enogh to get the picture a bit, I will read more later, but before I loose my thoughts, I might edit this out later.

Well, if you have not ready my "going back to school" thread, go read it ;) first.
Rachel is a huggie hug person, infact, she needs that so much, the preasure, the touch and contact, it is who she is. She going back to school, is going to be interesting, and in a way I am glad I read this because now I know to adress this on my kids IEP's on Wednesday. Joshua does some of the same too, he is such a baby actually, but that is a different point.

I have ralized some of what has been addresses here a while back, seen Rachel walk up to a total stranger, lean on them then want a hug :eek: my God, what is it gonna be when someone hugs her back, especially a dirty drunk guy who might want to take advantage of it, and belive me she has gone to a drunk guy for a hug before, thank God he was uncomfortable with it and he did not hug back, I ofcourse jumped to her aid right away.

One thing I have learn with Rachel, is as she comes and hugs me, I turn her around, and hug her a bit from the back, pat her, she has been learning this is ok, so I will talk to the IEP about doing this with her, and 'slowly' transition with her to something else, luckily she does like high five :). well I will be back and ad more, as I need to think more about this.

You have my prayers girl.

matika

and Hugs to Vince,, internet hugs are still ok I assume?? :)

love hon

[peglem]

(i) Meeting the child’s needs that result from the
child’s disability to enable the child to be involved
in and progress in the general curriculum . . .

Whoa, wait a minute- the curriculum refers to the learning materials- the academic goals and objectives, not neccessarily the regular classroom. So the idea is to get Vince working on grade level concepts.

I don't really know the extent of Vince's deveopmental delay- but sometimes inclusion in a regular classroom can be super cruel- the other kids and sometimes even the teacher(shouldn't happen, but does) can be very mean to those who are different. I know there is a big push for inclusion these days, but you have to be very careful to make sure this is really what's best for vince.

On the high 5 issue: High 5's are great for congratulating and celebrating, but what can you use instead of a hug to console a child?

[Mother's Heart]

"""Or, maybe he cannot show his most vunerable feelings, that I definately was like as a kid. The more upset I was, the more I tried to act happy. I have no idea what that was...I just know feelings were something to be guarded at all costs. Never ever EVER show your real feelings. I could show happiness, but nothing else, cause it was PRIVATE. Plus, if you showed say anger, and expressed it...what would happen NEXT, the unpredictablity, was far more stressful than just stuffing everything""

sounds to me like maybe you DO understand where he's coming from.



((((more huggs))))

[peglem]

Mili- I've just been pondering your situation. I keep thinking What happened? Your posts from years ago (i'm just recalling), seemed like school was going good and they were doing so much to reach out to Vince-Accomodating his weather obsession for instance-What happened? Can you pinpoint a time where things started to go downhill? Has the school changed? Has Vince changed? I'm not talking just psychological things here- has he had illnesses, however mild, that may have triggered regression? Just seems like to get a handle on this...I dunno. And how is it that Vince is the only student in his classroom? I'm so bothered by the fact that he isn't doing the same level of work that he did 3 years ago. Is that a matter of won't do or can't do? Allie has been on this downward spiral and its only recently that I've been able to look back and see that she is behind where she was 3-4 years ago. Its such a huge, fricken puzzle. But, I can see things now, where Allie was punished and reprimanded for things beyond her control (at home as well as school) and that can't help but make things worse. Vince does need a new FBA- but be careful that it is as objective as possible. Its so easy for us to assume why a child does what they do. Yours may be easier than mine because Vince is verbal, but he isn't neccessarily able to verbalize what he really feels and thinks or why he does things- particularly if he is getting impulses or obsessive thoughts out of the blue and doesn't know why himself. I'm kinda rambling here and probably should have organized my thoughts before I sat down here to write this.

I keep coming back to this child I had in 4th grade. (I knew him and his family well, since he was also in my kindergarten class years b4) He developed a throat clearing tick after a sinus infection. His parents asked his pediatrician about it and was told it was just a bad habit that he got into when he had the infection. So they, and more importantly the kid, thought that he could just work on fixing the habit. Well, it didn't look like a bad habit to me- he would just erupt into throat clearing in the middle of class and you could tell that he was not only embarrassed by it, but felt like he was doing something wrong. He could suppress it, but only if he concentrated on suppressing it to the exclusion of everything else. This child was very verbal and able to express himself very well- top of the class and well above grade level in his skills. He would not talk about it because he felt like he was doing something wrong. Then he started some facial tics-especially when he was trying to suppress the throat clearing. Finally his parents took him to a neurologist and it was confirmed to be tourettes. Once the pressure was off him to control the tics, he was more relaxed about it and did not tic as much.

I know that you told me that both you and your children have had problems with strep infections-so, is there a possible connection to Vince's behavior? The strep does not have to be active at the time, because the real problem is that the strep triggers an autoimmune reaction, which is what really causes the problems. Just pondering...

[milivica]

Peglem,

HOLY POOP thanks for telling me what that meant! I want that for him too, but like I told school I'm not a big fan of section 504 in and of itself. I mean, I don't want him sitting there, spacing out to bide his time till the bell rings, kinda like kids do in church.

As for the difference, I swear the difference is the new case manager. She's devoted to the kids, yes. But it's like a 'blind' devotion...when she doesn't know what she's doing she is extremely defensive and unwilling to explore new ideas, which leaves me screwed for just about anything for Vince. Not to mention, she just wants to 'run' his program there, not even telling me he was spending NO time in his regular ed class - I'm really hung up on that one. Again, thanks for explaining that snip I posted about 'general curriculum'. Although, for geography and anatomy he is for sure at least age appropriate if not a bit higher. He knows the names of more places and where they are (from weather channel) and knows more about body function even if he doesn't know the medical name for things.

Overall, based on the years of experiences with my kids' school, it's been a great school! Which is why I really want to try and do what I can to work with them, rather than mediation or court or whatnot. Not that we could afford a lawer, unless they give third mortgages. And even if we went that route, unless your school has been outrageously in violation of IDEA, court won't rule in our favor - and even if they did - you know how that goes, school still won't do it and boom court, court, court becomes your life.

One thing I know, is I need to really observe and get a true feel for how he acts at school, and what the reactions by adults to his actions, are telling him. Adults still seem to use typical reactions to asd kids - I do it too! Until I get a 'vibe' into a kid.

As far as strep/physical explanations for Vincent, I can't remember the last time he had it. So I don't think it's the issue. I think there are a bunch of adults trying for him, going to him, so he doesn't need to try for us or come to us or please us. He isn't challenged, so he doesn't feel pride or accomplishment like people need to, on a continual basis to build a feeling of competence. Since the night of the halloween party, I've been 'solem' and ON TOP of his every move, and haven't felt as 'beaten' constantly. While carving pumpkins yesterday he went bizzerk the moment I left the room, pumpkin everywhere, so I sent him to his room where he missed the next event....eating cooked pumpkin seeds and watching a scarey movie together. I wanted so badly to at least save him some seeds, but I said 'no' to myself. Earlier that day, Carmen wasn't sure which shoe went on which foot and I said 'ask your big brother' and Vince told her and you could 'see' he felt good about himself after that, he gave a little skip when he walked away. I kind of want to combine discipline things with self esteem things...ya know? Today he's been very good so far, has asked me if he could do things rather than just doing them...and has been told no to everything he asked so far and handled it saying "ok, yes, that's good to say no cause you're the mother". Which means, he does NOT understand...I make sure and talk to him after every 'no' so he knows I'm not saying 'no' to make him sad or mad, which is usually his belief.

I've really identified the core of my sadness - more like deep depression. It was something I said a few posts ago....I can't help but feel, there's so much wonder and good that can be accessed in him, if I only had a clue what to do...and that is the summary of why I'm hurting. So, I'm working on that with him now, as best I can. Pretty much like every parent that cares.

[lisa6wks]

Mili,
I think you are right on the money about what makes Vince feel good. Can you find more instance in which he can feel that way, like he has helped someone else, feels competent? Could he help with younger kids at school? Can he read? Could he read to younger children sometime during his school day? Vince sounds as though he is aware enough to know if someone is just "shining him on" complimenting him for things that aren't really important. I also think that if you stick to you guns like you did about the pumpkin seeds and the movie, Vince will see that when he does something inappropriate it is important enough to you to make sure that he feels the full consequences of his actions. I remember when I had to stuff like that to my kids, it just about killed me to make them miss out on fun opportunities. But I had to keep reminding myself that it wasn't about my feelings, it was about my child's behavior and how they felt about themselves.

Also, could some of this be because puberty is lifting it's ugly head? I swear some boys (and girls) just become ridiculously hard to live with when all of that gets started. I know it can be worse for kids with developmental delays, they don't really know what is going on.

Lisa

[Fe-fe]

As for the difference, I swear the difference is the new case manager.

You are probably right. A change in case manager/teacher can make a big difference, especially changing from having a friendly, caring, understanding person to a b**** who is the exact opposite, eg I had a teacher in Grade 3 who used writing lines as a disciplinary action, and she was always making me write lines or chucking a spack at me when instead she should have focused on finding a solution to the problem. In my case, it wasn't behaviour that was the problem, it was more things like time management, forgetfulness, and organisation (remembering to take everything I needed, and being able to find it in my desk :embarrassed:.

These are just a few examples, but I do agree that the change in case manager could be contributing towards the issues in Vince's situation.

[peglem]

chucking a spack

Love the phrase, but what the heck does it mean?

[milivica]

chucking a spack

Love the phrase, but what the heck does it mean?

Sounds like a 'down under' or Peta thing (Fe-Fe, Peta is a woman here from NZ)

Fe-Fe, glad you hear what I'm saying. Ugh! It's very frustrating, but the new case manager is a part of this dilema.

Lisa, yes puberty is definately rearing it's ugly 'head'...and quite a clever pun you made there....so clever I'm not sure you realized you made it! Hee hee. And I absolutely love the opportunity to make him feel genuinely competent. I was so eager to do anything and everything I could with that 'positive reinforcement' stuff, I swear it's like we threw a parade through the living room every time the kid farted. As far as the missing the movie and pumpkin seeds thing...I can't believe what a wimp I've been in this area, this is the first time I've really ever made him miss fun (versus making him wait till later or whatnot). Hopefully, this is a big part of Sir Brat-a-lot's behavior problems.

I would have said more, but I've blown my bedtime so will be up all night now, cause it's too late to take my sleeping pill. I was so pissed, by reading this letter from school that I just found in Vincent's backpack....it sets guidelines about my observing like I can't observe more than 40 minutes per week, etc... AND ...has the gall to make it sound like they're doing me the favor. So my response:

Dear ____,

In reference to your 10/24/06 letter, I'm not asking for any accomodations what so ever or for 'my' needs to be met.

I'm asking to observe my son at school, according to federal law. I'm observing because I have no choice. We talked about all this in person, on the phone, we've written about this. I've actually spent far more time talking and writing about observation, than observing. Look at the IEP, I should have over one years worth of video progress of Vince. I have zero. Here is the last thing I hope to say about observation:

Parents have a right to access to teachers, opportunities to volunteer and participate in your child's class, and to observe classroom activities. (Wrightslaw: No Child Left Behind, page 39, 58-59, 80, 194-198)

and

"a school district's refusal to allow parents and their professional representatives to observe their children in a special education classroom violates the parents' rights under the IDEA to be full and equal participants in the development of an appropriate individualized education program (IEP) for their children."

I did not plan to make a career out this. And other than observing him in regular ed (Mr. ____'s) I had no plans for further observation. If you let me know when Vince will be in Mr. ____'s this week, I can let you know when I'll visit. I still have no idea how much time if any he spends there.

Another part of your 10/24/06 letter....this repeated excuse about other children's privacy being violated by me observing Vince. You could not possibly believe that and have parent volunteers with no credentials what so ever roaming the school teaching other people's children. My other child also with an IEP is pulled from class and taught by a few moms over the last 2 years. So, if student's privacy is really the problem, stop allowing random volunteer mom's to observe, participate with and teach other people's kids. Actually, I'd like a copy of the written school policy about parent's observing their children. I've yet to receive or read it.

Now, although I called the IEP of 10/24/06, I did not get to speak as I intended, other than the last 5 minutes that remained. I think there are way more important things to focus on, Vince being the number one thing. So can we please, just get on with Vince.

1) His IEP says he should be in class 1008 minutes per week, he has not been in class even one minute last week. Perhaps this is appropriate for him now, that I don't know yet. What concerns me is last year, he was not only in class, but in class UNaided part of the time. What happened? Additionally, why wasn't I included in this decision, or even so much as informed? I found out by accident, during observation. What can we do to mend the communication breakdown here?

2) He had skills both academic and social (ie math and class participation) and has lost them per his IEP's as well as my memory. What happened? Additionally, why didn't I know that he was losing skills, not making gains? What can we do to mend the communication breakdown here? I suggest nightly homework.

3) I feel most important...as we both observed, we concurred in 20 minutes there was maybe 5 that Vince was able to work/focus on the task at hand. (If I understood correctly) we both then and all of us at the IEP felt this was the issue most impeeding him the majority of his day. So what evidence based practice has been used to allow Vincent to focus his chaotic mind?

4) a)What the behaviors impeeding Vincent's progress, and, b) what evidence based practices are currently being implemented, to prevent the escalation and reoccurance of behaviors impeeding Vincent's progress?

If I were included in changes to the IEP (or at least informed), and you have a solution (by solution I mean evidence based solution) for ONLY numbers 3 & 4, then I don't need to observe.

Despite me never being included in the devation from his IEP, despite the hurt and shock I feel that he is no longer in the general curriculum what so ever, and me being informed of none of this, and continued harrassment about observation as well as the more than chilly reception I get at school...all I'm asking is the chance to work with school. To be a full participant in the IEP team. In return, I get this letter from you trying to take away my rights as his parent and a fully participating member of the IEP team, but, worded so that it sounds like school is doing me a favor???

Now, I cannot stress how exhausted I am over needless stuff like this. Have I spent even an hour there (if you subtract all the harrassment/ questions I answer)? This email alone took hours to try and write, edit, read and read again. So here it is, I am begging you to simply let me become informed enough through observation, to be a full participant of the IEP team. My attempts to work with school as a part of it, not as an intruder in it have failed. My current focus in all honestly, is getting an evidence based plan underway, for his chaotic mind that prevents him from learning the majority of his school day...based on my limited observation that day with you.

I'll have to send things relevant to his 10/24/06 IEP another day, as I've spent all my time on this email, and have only a couple of hours till sunrise.

(my signature)

[Fe-fe]

Originally Posted by peglem
chucking a spack

Love the phrase, but what the heck does it mean?

Chucking a spack = common term Australians use describing someone getting angry.

Peta - where in NZ are you? I'm originally from Auckland.

[peglem]

Mili, Your latest letter is great and to the point. Might I suggest you send a copy to the SPED director at the district office? If the bosses at district office are aware of this problem, I'll bet you see action more quickly.

[milivica]

Wow really? I worried it was long...I cut SO much out so I wouldn't be all over the place. We had a superintendant that was completely awesome. Just our first meeting with him, it was like there was this 'vibe' he beamed out that let you know he was totally in touch with what to do for kids, he was in sync with them, I don't know how to describe it. I mean, when dh and I spoke to him - wham he got things moving for Vince. I don't know who does his job now, but that's a great idea.

I need to figure out which tree Vince flung the printer cord into (nope, not joking) so I can print the letters to/from school and drive them to the new super's office. The worst it could do, is not work to get in touch with him. Right? The best, is he could decide to get Vince back on track. GREAT idea. I'd forgotten all about going to the principal's boss.

Thank you!
Mili

[peglem]

If that doesn't work there are state agencies... Going to the higher ups often creates an adversarial relationship with the school, which you've been bending over backwards to avoid, but it looks like its to late to worry about that now anyway. What the h3ll is their problem? Do they deal w/ all SPED this way?

[milivica]

Yeah I totally want to avoid that, it takes all the attention away from creating the right program for Vince and onto all other kinds of crap...he said she said stuff and finger pointing and defending stuff. Giant waste of money for school too...the burden of proof is on them, I lose no money for mediate and a hearing or what ever the thing is called after mediation fails. I did it in our last state, we did phone calls with the school attourney, myself and the judge on three way calls.

And yeah, I think they are pretty frigid with all the SPED parents - at least the ones that want to be informed. I never really had a problem when I was praising them...I can remember a time when I marvelled at how well he behaved at school compared to at home.

It'll all work out, it has to. I really makes a HUGE difference to have been down this road before, and been into the whole autism/school thing for so many years now. I can't turn back time. I don't care how things got this way enough to focus on it, and take time away from focus on how to make the right presently.

I still can't believe I understood so much of the IEP (except the meaning of general curriculum of course :o :o :o )

[SuperMama]

Hey Fe-Fe. I am from all over nz, have lived on both main Islands. But home now is Otago. Took hubby away to Queenstown for his birthday. We spent three days on the shot over river jets, and helicopters and getting into the adventure tourism over there. Came home exhausted. LOL. Back to reality today with kids and pets and life.

http://i23.photobucket.com/albums/b385/SuperMamma/43rd.jpg

[lisa6wks]

Mili,
I was not clever enough to see that I had made that rather naughty pun :eek: :p

I honestly cannot see why you are having such a difficult time with these people. Your email sound so reasonable and thoughtful. Maybe being caught not implementing Vince's IEP is what is making them so defensive. The best defence is good offense sort of thing. I am sorry, this is just the kind of thing that makes special ed into an adversarial position with parents of kids with special needs. I really hate it!

Stick to your guns and keep doing what you know is best for Vince. He sounds like a very clever child who has really learned the game of manipulation. He has just learned it later than kids without autism. I don't think manipulation is a bad thing per se, it's the only strength kids have. It's just that it's up to us to put a stop to it even though it is so painful to us. I know I really made some mistakes in this department myself, especially when raising my oldest, my kid with CP.

Go, go Mili!

Lisa

[milivica]

I've really really appreciated, and NEEDED all the feedback. I would have felt totally like I was being unreasonable and unfair to school without it.

I'm going to school tomorrow to observe Vince for 1/2 hour in his regular ed class for what they call 'Guidance'. School is aware I'm coming, no one squacked about it being over 20 minutes (I got this stupid letter trying to limit the time I could spend to 20 minutes max, 40 minutes max per week).

I don't expect to observe anything particularly informative, but then again who knows I might. That's the reason I'm observing. If his case manager starts the intense dramatics again about how I am defiling the other students' privacy, I considered holding out a fist full of #2 pencils and asking her how many she thinks she could snap in half with her spincter.

Mili

[lisa6wks]

Uh, Mili...., I don't think that last action, you know the one with the pencils? would be considered "appropriate" :)

Seriously, please let us know how the observation goes. I am sure it will give you at least some insight into what is happening.

Lisa

[milivica]

The observation was uneventful...Vince basically goes into a 'static' state of mind, looking through a book while the class discussed a great (really great!) topic....Disabilities. The whole thing was handled really great, I didn't really go to observe subject matter, but just had to give kudos to the way the school went out of their way to cover the topic, and in my opinion, make sure all the kids in class understood many different people with many different abilities in only 1/2 hour.

Well, you would think an uneventful observation, with only one more planned (and I even gave advanced notice) would be a good thing, and finally we'd have some 'peace'. Nope.

Here is the letter I just sent. I'm just sick of being treated like crap. Maybe I will get a lawyer. I'm so tired of having to bear the fallout of school screwing things up cause his case manager doesn't have the first iota of understanding about him. And actually, that I could even handle if she didn't keep treating me like dog poo. I'm going to buy a printer cord, and give these letters to the superintendant, and see what happens. Read on:

Assoc. Prin.,

When I picked Vince from school, he went completely in tears and frustration after getting in the car. I tried to understand his story about a snake at school, then we got home and I read a letter from Ms. Case Manager, part of which says: We needed to have him behind closed doors as his extremely loud voice was disrupting learning. Vincent was shoving into Mrs. H and attempting to push her. Ms. H needed to call Mrs. E and Vince eventually did go into the room to quiet down. He was able to have lunch in there and spent the afternoon doing is work in 411.

So I'm thinking why was he so upset? The only clue I got from the letter was: "He was able to spend a bit of time with the snake and then I took it outside. At this point, Vincent's engine was running extremely high and having him take the snake outside was not an option." From this, I picture him looking at a snake in a box, then his engine is so high Case Manager had to take the snake out. But HOW did it get so high? What caused him to escalate? This piece is missing. That is the reason I called Case Manager, and needed to understand why his engine was so high, was because of the fallout of his high engine (going to the paws room, etc etc...) in her letter completely prevented any further learning at school, it was reasonable for me to ask.

I expected a simple answer. Instead, she struggled to explain what caused him to blow up. She did not struggle to loudly berate Vincent "Your son just wasn't making any sense" and me "tell me what it is you don't get so I can explain it aaaaagain". I understand from you that you were present in her room, and heard this, and did not have a problem with it, since she feels like she's giving 120% to just one kid. That it is I who just don't understand. I understand that in the time it takes to put me and my kid down, she could just answer my question...what caused his engine to be so high, at what point did he escalate?

Finally, I got the critical piece I needed...she offered to let him take the snake outside, but he was unwilling to do it under her instruction, wanted to do it his own way, so she said she'd take it out and THEN he blew. So simple!

From that information, my conclusion to the incident TO VINCE was this, "there was an important part missing from both Kathy and Vincent's story...which was Vincent saying OK to Kathy who is his teacher" I told Vince had he said OK when Kathy offered for him to let the snake outside under HER terms (to place it under a bush) he would have been permitted to do so. This completely changed his attitude, when I told him this. This means he should not take his anger back to school tomorrow, and the added benefit of him not perseverating on it all night with me. I further told him that what ever consequence Case Manager chooses to give him, due to his name calling of her (I hear there were several) he is to do it, period.

I am trying my utmost, and level best to come from an approach of having Vincent work with school rules and Case Manager's teaching style. I've done my utmost to support Case Manager. I've not even offered her so much as one SUGGESTION, let alone a criticism of her professionally or personally. I thought that would mean something, to have a parent try to work with school instead of coming in like a sherman tank and pointing their finger and shouting at school staff like they are the enemy or something. It's not that I am unable to let Case Manager know she needs to be professional with me, it's that I was unwilling, trying to focus only on productivity for Vince (such as communication between he and Case Manager like today).

Since everyone has been so very honest with me...his IEP is not being followed, his behavior is not understood, his thought process is not understood and his behavior goes is out of the control again and again because NO EVIDENCE BASED practices are currently being implemented to prevent the escalation and reoccurance of his behaviors. This impeeds Vincent's progress, especially when he's crying and tantruming in the paws room instead of learning. His academic skills are not progressing appropriately, he is doing the same math in 5th as he was in 1st (3+1, 2+1, 4+1 !!!), he participates in no general curriculum - YET - I am saying please let me observe and work on solutions. I have been MORE than reasonable. I GET IT ALREADY that no one wants me there, but if I am not going to be allowed to be a fully participating member of his IEP team (I assume the rest of the team is not treated with the resistance and disrespect I am) then I will seek outside help. I just don't know what else to do.

[peglem]

We should send a copy of this thread to the Pope. I'm sure he would canonize you as the patron saint of patience! Oh, wait, you'd have to be dead 1st.

If it was me, I'd stop dicking around with the school. Developmentally delayed kids can not afford educational delays as well. Are they trying to make him developmentally delayeder? (I swear, I should create my own dictionary!) Its not like he's merely stagnating- he's actually regressing! I'd take it straight to district office and if I didn't get swift resolution, go to state level.

I don't really understand what the whole snake thing was about. I also don't understand the "case worker" thing. Allie never had a school case worker- only a state caseworker because she receives state medical coverage. All her case worker does is check up to make sure Allie recieves the services the state pays for and that they are helping her. She also locates resources that Allie needs. She does not get involved in educational issues unless I want her to. So, what exactly is the case manager's job at school?

As far as Vince sitting apart from the regular ed class while they discuss a topic...not a great situation. I think this is an area where your RDI coach could really help. I suspect that the regular ed teacher 1.) has no idea what to do with Vince (how could she when even the sped staff doesn't know), 2.) would have great difficulty integrating him into what she has planned for the other students and 3.) doesn't really want him there. Do you think that whole disability discussion was "put on" for your benefit or they just coincidently were in the midst of a unit on that topic? Is Vince supposed to be assisted by a staff member when he goes into the regular classroom? Because, in my opinion, he needs to work in a small study group with age peers- heavily supervised- they need to learn how to interact with him, too. Am I correct in assuming that inclusion in regular ed is mostly for social skills development? If so, that needs to be planned out. It won't just happen by his being there with them. What skills will specifically be worked on, and Vince needs to understand what they are trying to get him to do, so he knows what it is he's supposed to be working on. Otherwise, its like he's in a contest with no finish line.

I've got a school change coming up here for Allie that I'll probably write more about later-

[milivica]

>>>>Am I correct in assuming that inclusion in regular ed is mostly for social skills development? If so, that needs to be planned out. It won't just happen by his being there with them. What skills will specifically be worked on, and Vince needs to understand what they are trying to get him to do, so he knows what it is he's supposed to be working on. Otherwise, its like he's in a contest with no finish line.

DING DING DING! That's exactly what I'm trying to tell them, amongst many other things. We have to agree on what skills he is working on while with his peers, make sure he knows what's expected of him, and predict any barriers so we have a plan before even walking it.

The snake thing....as you read in my letter, Vince got in the car after school, and just fell apart. Crying, tantruming...he said something about a snake from outside that had gotten into school. He said he was 'under his table' and heard a boy in the hall yell snake! I got a letter from school saying about the same thing, also saying that he picked the snake up in the hall and school finally pursueded him to put it in a box where he looked at it for a while. Then also saying how he was locked in this room to calm down, pushed an adult, it's in the post above in bold what school said. That was from his case manager (makes out his schedule, assigns various staff to work with him, makes sure the IEP is being implemented) .

I wanted to know, what triggered his escalation...like Vince, I need every piece of the puzzle. When exactly did he go from looking at a snake in the box, to the meltdown. I eventually after putting up with the case manager talking to me like crap, got it out of her that she offered to allow him to let the thing outside under a bush, he wanted to place it elsewhere and refused to put it where she asked so she took the thing out herself. I'm fine with that, I really do want to do what I haven't before which is get Vince to work around what teachers ask of him. What I'm not ok with, besides her tone and insults to me, and her inability to understand his thought process, is the fact that she is so unwilling to allow me to be a part of this learning process with 'the team' despite the fact I am totally supporting her with Vince.

And the funny thing about the names Vince aparantly called her, was he told me he told her she was all old and wrinkly doesn't know how to be a good teacher. Guess the truth hurt!!!

I totally do not expect her to be onboard with autism, cause it's not an intrinsic thing a person just knows. But since they are clearly unwilling to consult with me (for free) then I am going to insist they do so with a qualified individual that can demonstrate the ability to make progress of any kind with him, preferably 'appropriate' but I'll settle for any progress at all at this point. Ya know?

This bite your tongue nt stuff is HARD. I've really been good I think. But I really will not put up with any more. The truth is, this isn't working. I'm not blaming her entirely, it's been clearly a long process of him slipping away, that I just didn't get. Last year, I avoided school like the plague, I was spent, and I just let them do 'their thing' without 'interfering'. So, this has been at least a year + in the making. I couldn't believe the new math they sent him home with tonight, not all +1 stuff, but still all single digit. He put down that 6+6 was 10, 11, 14 and 16. I'm telling ya in 2nd grade the kid could carry over, and was doing triple digits....barely, but he was doing them.

I'm done, I'm spent, I'm not talking with school anymore. I'm going to the superintendant, and if that doesn't work then I'll be asking you guys what to do next. I'm finally well enough myself, to home school if need be (ok, maybe not that well :o ). I just hope this all quickly gets resolved after talking to the super. Think I'll call, let them know how dire I need to see the new super and go there if he can see me. The last super, omg he was phenominal. One meeting, and he got everything set, things we never even thought of, the man knew people, didn't matter what their disability or ability or whatnot, the man knew kids and people period. If he were there, I wouldn't even be concerned. But honestly, I'm scared to death. But hey, just have to see what tomorrow brings. So I'll try to chill for now.

Mili

[peglem]

"I'm not blaming her entirely, it's been clearly a long process of him slipping away, that I just didn't get. Last year, I avoided school like the plague, I was spent, and I just let them do 'their thing' without 'interfering'. So, this has been at least a year + in the making."

Don't you dare feel guilty and blame yourself because they didn't do their job. You relaxed a bit because you had already worked so hard to get things right for Vince. All they had to do was stick with the program that was working, monitor and adjust as needed, and let you know when and if changes were needed. They screwed everything up and are refusing to let you fix it. I'm sure you must have plenty of other things to feel guilty about!
You should be congratulating yourself for not actually bringing up the "pencil cracking sphincter" to her.

[milivica]

>>>>They screwed everything up and are refusing to let you fix it.

This is actually how I feel, and maybe it's showing through.

>>>>I'm sure you must have plenty of other things to feel guilty about!

Of course I do...I'm a mom (lol) plus was raised Catholic.

>>>>You should be congratulating yourself for not actually bringing up the "pencil cracking sphincter" to her.

Ok now, I actually do give myself credit for that...I think I at least deserve a "Resisted a sphincter sarcasm" trophy for biting my tongue on that one. Although that might be a pretty ugly lookin trophy!

I don't quite feel sorry for anyone, but I do feel for them. Like his 'pencil crackin' case manager, she's really loyal and devoted to the kids, I can see that - however, so are old ladies that keep 500 cats in a room full of fecal matter thinking they are 'saving' them. And that of course is an extreme example, I'm not truely comparing her to that.

I really really in my heart, respect and revere teachers way more than about any other profession. What more important profession is there than one that cares for and teaches my kids? And I would imagine, much like being a parent, you have bad days and good days, make bad decisions but more good ones than bad also like a parent. Overall, I have had far far more happiness and successes with the school than upset. So, when I have upset, I try to like not be so black and white like I usually tend to get, and strike a balance, and not forget all the good they did too. BUT, you are correct, this does have to be corrected, Vince does need to learn, and there is no excuse that would be a good one for him being so far behind what he used to be...especially without me knowing about it.

He will go to the middle school next. Same district, different school, it's actually next door to the one he is in now....does that mean IF this does get legal, by the time I'm done fighting he'll be out of that school so they don't have to really try anymore and that's why they're being like this?

[Keggy]

Sorry I haven't had time to read this thread... read the first page and the last post... things not well I guess?
After reading the first page... and the part about me never agreeing with you (hrumpf) I wanted to add this.
Picture Vince is in a class where he is not allowed to receive hugs from the teacher. He sees another kid who can... there is your problem.
I think what they were trying to do is stop the inappropriate actions of the aide, maybe a lawsuit is brewing (hence the deadline)
this may all be irrelevant by now... but in any case I am so sorry that you guys are going through this. life is tough.

[peglem]

"He will go to the middle school next. Same district, different school, it's actually next door to the one he is in now....does that mean IF this does get legal, by the time I'm done fighting he'll be out of that school so they don't have to really try anymore and that's why they're being like this?"

Will he go to middle school next year? Will there be a different case worker in M.S? Because, if so, you might request the involvement of the other case worker to "make the transition smooth." She might be able to "trump" the Adolf you're working with(against?) now.

@ the why- it could be the "ride it out 'til he's somebody else's problem" syndrome. But, the district will still be responsible thru 8th grade, so the SuperI should still be willing to deal. I had this sudden insight as I was rambling to you on the NCLB thread, that perhaps they don't care because he is a "nonstandard accommodations" kid and his test scores don't count.

[milivica]

>>>>>>>>>>>>Adolf!!!!!!!!!!

tears are rolling down my face, omg, Adolf!!!!!!!!!!

ROFL ROFL ROFL ROFL!!!!!!!!!!!!!!!!!

ADOLF....Baawaawaawwawawaaaaaaaaa

It's a great idea, so great I will do that.

How am I ever going to bite my tongue on that one!

[lisa6wks]

Mili,
Can they not just assign Vince another case manager? This one just doesn't "get it". Where is it that you live? I feel like going over there and kicking some butt!!! I really hate it when the kids get the short end of the stick like this.

You have been a sweetheart and have put up with far more than you should have to. Have those "teachers" had any kind of non aversive training like Mandt? http://www.mandtsystem.com/
They need to learn how to deal with explosive situations without making the child feel badly. And I agree you need someone to come in there and do some training, at the county's expense. Do you have any autism specialists in your school system? Ask that superintendent. Grrrrrr I got my butt kicking boots on!

Lisa

[milivica]

I'm in Madison Wisconsin...come kick away!!!

I'd love him to have last year's case manager...but honestly I dunno how much it would matter. He needs someone with experience in the core deficits of autism. I'd be asking for the same things no matter who his case manager, and, her hating me so much does make it easier to ask for what I know he needs. I love his old case manager, it would be hard if it came to us being at odds with eachother. This woman (Adolf) already hates my guts, so there's no uncertainty or other anxiety causing stress to worry might happen, it already did, she already can't stand me.

I understand how totally unmanageable Vince 'can' become...which is why it's so important to make sure he knows you understand HIM first, you can then try to get him to understand you, and avoid a total catastrophe.

And although we have autism consultants, they're as crusty as 'Adolf'...it's like since becoming familiar with the core deficits in RDI, that's all I seem to be able to 'connect' with in terms of what I want for Vince. I don't want a bunch of behavior based emtpy nonintrinsic stuff, I want him to GET IT, even if the IT that is being worked on is something a 2 year old gets. I'm upset enough, his academics seem to have really regressed...but that's not as important to me, as social skills. If he has good social skills, he can be old fat and stupid, and get some hottie to be his sugar mama, hee hee.

He doesn't have to be typical either in neurology or personality - gawd I would hope he would always stand out as the wildman he is, cause that's just him! His love for weather and animals, great! But I want him to learn to stop continually offending, resisting, and making others miserable in a way that is not reasonable. He is the funnest coolest greatest kid to be around when he's not making you want to get away from him...which is usually. And that is the core of my sadness as his parent. He loses so much, and has lost so much and will continue to, if he cannot learn to not be so aversive to others. I do expect others to respect his wish to twirl a string or cord in the corner at say a birthday party...but it is not ok for others to have to be struck repeatedly by a hyperactive child by that cord as he flies through the room like a lunatic.

OK, dunno where I'm going with this.

Back to the school topic....I'll be observing for his 'related arts' time tomorrow for one hour. They have already said only 20 minutes. I will have a copy of federal law regarding this on hand. I have told them the only way they will pry my kung fu grip off the chair will be to call a cop. I'm going to be really unhappy if I get arrested. I will try my utmost to be very calm, quiet and proper. I mean I'm doing what the law states I can. I'm trying to think of my actions as a potential stepping stone for other parents to be able to follow...kind of like all those amazing parents who helped the IDEA act to become a reality, so my child and so many others can benefit.

See, the principal, she and I are oil and water, so I wouldn't put it past her to call the cops but try to orchestrate it like I'm the bad guy. So, if they call a cop, I'll show him the federal law, if things go badly I'll shut my mouth and at least I'll have a written report of the incident, to show school violated my rights under federal law and the cops did too.

Vince has been in his regular ed class for a total of 90 minutes this week, falling over 900 minutes short of what his IEP states.

Anyhow, let's see how tomorrow goes. I'm going to be very unhappy if I wind up arrested...although I really doubt that will happen, I'm kind of nervous. I will not talk to or debate the issue with school, I'll just sit in the back of the room in my chair and shut my mouth no matter what they bend over and whisper to me (like last time) cause I'm finding that you don't have to say 'no' or give an explanation, ignoring someone wiggling their finger, or whispering 'it's time to go' in your ear IS saying 'no' without saying a word.

[peglem]

Y'know, if you did get arrested, it sure would make a great news story. "Local mom arrested by Gestapo for the crime of watching her child at school." Do they actually have somebody observing you observing? I'd be tempted when they whisper that its time to leave to whisper back that you haven't seen enough yet. I mean what would they do? And don't forget to give Adolf a big hug before you leave, being sure to wipe snot on her shoulder!

[milivica]

Yes, the associate prin. watches me watch Vince...although she's not directly staring at me. I assume she'll meet me at the front door, to try and set parameters about time before class with someone to back her up. My plan is, rather than whip out the law which they know, is to say I cannot say what time I'm leaving precisely because dh is supposed to come. Dh will likely not be off work that early, but he might...and he'll come if he is. So he actually might be there which would be great.

Well, we'll see how it goes. I'm surprised how nervous my stomach is! No fun, but hey...it could be so much worse. I'm just so glad, you just don't know, to have you and Lisa and everyone else here. It's made all the difference in the world. I just thank you all so much. I'll be back to tell you all how it went. I know the idea of being arrested is outrageous, but that principal is really something...the two friends I have that never say a harsh word about anyone, well, neither of them can stand the principal OR Adolf.

Adolf, baawawaawwa. That's still too funny.

[Isabelle]

Be sweet, smile very sweet.......wink, quietly, whisper to the principal how well is going the class, how happy that you can observe Vince, or whatever way you want to acknowledge something that you are pushing your way through.

[milivica]

Got my med check appt in 1/2 hour, but had to come back to let you all know everything went fine. No drama, no cops, no one even said a word to me before/after observation.

Geshtapo vas dare in da tvisty chair zat terns, I vas in da uncomfy chair literally 2 feet from the door. Hint? I zink zo!

I was followed through the halls...I considered walking into the bathroom to see if I'd still be followed. Yeesh.

The aide (who they claim is soooo uncomfortable around me) showed me the most hysterical thing...she took a video with her camera of Vince at school yesterday with the two school rats climbing in and out of his shirt...his smile was so sweet. This is an opportunity for him to feel confindent, competant and loved. That's the type of thing I love about school, the extras his aide does that she would only do if she genuinely cared about him.

I still have said noting in the way of criticism or even suggestions. I'm going to run by everything I saw with the RDI consultant, my ideas about it, then she can make sure if my idea as in sinc with the concepts he needs.

I don't think I'll observe again until I have made a list based off of the first I didn't get to read at the IEP...and based off the suggestions from the RDI consultant. So I can target what it is I want to observe. For now, I'm just observing overall...nothing speciffic.

I might hesitate now, to call the Super, because they didn't hassle me today finally. But, I want to have everything I need ready, in case I do need to contact him.

I need to get together all the copies of his IEP's I've filed hodge podge all these years, because I really think I'm going to need 'proof' on paper, of what I'm saying, if I even think I'm going to go beyond school's authority. Then, I'd like to create an IEP myself with the help of the RDI consultant, request his aide be trained in RDI, and have them send tapes every 2 weeks at school expense for the consultant to review. I know this is appropriate. Dunno how the heck I'll get it done though, but hey, at least I'm not in jail. So that's a good way to start my day :D .

[Lara]

Well, I must say it was good news to read here today that you were not in jail or on remand somewhere and needing us to come bail you out. :cool:
Everything you said in your last message sounds like a great plan.
Well done, Mili.

[milivica]

Super called me back...we spoke on the phone, I basically let him know the IEP was totally out of complaince. I didn't like his "well, I don't know anything about that" type of neutral answer...duh...I know you don't know it, aren't you going to ask me HOW it's out of compliance??? So, I expressed how difficult they were trying to make observation for me, and, how commication is not working well at all. That I prefer to handle this on the lowest level possible, but am not having any success so called him. Then he went on to defend the principal, after I told him there's no way she and I will be able to work together, she even tried to shut me in a room and wave her finger in my face last week - to which he said, "well yes, she can word things strongly".

:( Comments that are all the signs of a very long uphill battle.

I told him my primary concern at the moment, was working out an evidence based plan to enable Vince to attend, that none is being applied to him at the moment. He assured me they all including the principal want what is best for 'little Vincent'.

I dunno that I feel I really got anywhere, while I spoke, he was very quiet, and gave no feedback that showed he was appauled or even understanding that I was telling him Vince is doing less than he did THREE years ago, and school is doing all they can to NOT inform or include me as a fully participating member of the IEP.

He then, went on a bit about the principal having the right to not allow observation at a point that it becomes disruptive to other students, so he can see her point. :mad: Yeah, everyone can see her point, I called you to see mine. Sooo, I told him on what pages he could look up federal law regarding parent observation in a public school, told him I wasn't too fond of everything the government decides, but it is what it is. Then he had to go real quick, saying he had a meeting.

Welp, we'll have to see if this guy is going to be the lifeline the other super was. I already think not. He expressed that he did not want to see Vince at school with me one day. I thought that was a darn bad sign.

But hey, my optomistic motto for the weekend is...at least I ain't behind bars.

[Mother's Heart]

mili, sigh.

"He expressed that he did not want to see Vince at school with me one day."

what does that mean? I just don't understand the statement.

I've read all this thread all along...it's just a bit overwhelming to me with my brain already on overload.. I guess it strikes too close to home....I'm sorry for my limited replies. sympathizing and thinking of you...just don't know what to say.

cj

[milivica]

All replies of support are VERY helpful cause they strengthen me. Thank you for going through this with me as you read all this. I hope somehow, together we ALL here find ways that help our kids, that we can share and use. Ya know?

I'm trying real hard to imagine a good side to him clearly not wanting to be 'bothered' and have everything handled on the 'lower' level...maybe he's even worse to deal with than the principal, and she'll for the first time in 6 years work with me just to AVOID dealing with him.

Hmmm??? Maybe?

The other explanation that I had for him sticking up for the principal's actions and statements and gestapo-observation policies, that even my 'victorian' ma agreed with, was perhaps she was under his desk during our phone call.

;)

(and I want another award for not saying THAT to him, in addition to the sphincter/pencil comment I withheld from Adolf)

[milivica]

Ok ok I'm back already, I can't leave it like that....I never met the man. I have to give him the benefit of the doubt for now, until there is proof I should not.

That's truely how I feel.

But I'm frustrated, so I seem to need to blow off steam with comedy when I can - not saying I'm funny :confused: other than to myself.

Even Adolf came out to the car, to explain Vince being upset after school. At first, she assumed he was upset cause she didn't let him use the puter for the rest of the afternoon, for having snuck it after she'd said no. I ignored the obvious response which would be how the h#ll can a kid 'sneak' using a computer, who was watching him - what was he under his table again. Instead, I said to Vince that if she said no, and he did it anyway, I think she was very right to not let him use it further. So, it seemed he still had something on his mind, but she concluded as did I that now this incident is done. I hoped I wouldn't hear about it allllllllll weekend. And did appreciate her coming out.

As we drove away, Vince again broke down in tears (this time not schools fault). Get this. I was late today, there were still cars picking kids up, but I was 5 minutes late. He waited with his other aide, herself the parent of a child on the spectrum. At some point, I assume because he got worked up about waiting, the aide said to him something like, "maybe tell your mom not to be late next time" or something according to Vince. I'm assuming she meant it to calm him, but maybe she was frustrated...I wouldn't want to be with a freaking out kid cause his mom was late either. Anyhow, the point is when Vince tells me she said this though, he escalates like crazy. I pull over again in the school parking lot, and ask him to tell me more. He eventually says "it was like she blaming me" and started crying again. Remember though, Vince CANNOT explain himself in issues like this. So, I asked if that's why he was crying and he said "no" and began wailing again. Then, he continued talking about 20 different topics switching every 3 seconds (not kidding) and finally said something about loving me even though I'm ugly (Jesus, thanks) and I said, "Ohhhhh, Vince, saying I am late is like saying I am a woman or saying I have brown hair....it's ok to say mommy is late. It is not the same as saying fat or ugly or stupid" Then he was fine and has been fine since. Get it...he thought calling me 'late' = calling me a name. I'm going to let Adolf know about this just to try and get her closer to getting his mind process.

[peglem]

Well, I just wrote a huge reply to this thread, only to be informed that I wasn't logged in (but it showed I was at the top!) Anyhow, lost it. . I think this is the district administrator who is actually Adolf's boss. (hope you don't slip up and call her that someday!)



She will have more of an idea what your talking about than the super- but, shame on him for not offering to help resolve this or referring this to the person who can help you. When you call, my advice is to be direct about what it is you want her to do.

In the post I spent hours writing and then lost, I told about a situation with Allie where the district administrator of SPED stepped in at my request and got a situation resolved for me. Mighty quickly, too, I might add.

Now, if this person is "buddy-buddy" with Adolf, you still might not get resolution- but the super does more with budgeting/setting policy than actual education.

[milivica]

Oh my gorsh peglem, I've done the 'lose a major post' thing on more than one occasion...ugh, that's aweful!

Guess I'll finally keep it short...in case my post zaps too.

And that is Adolf's boss, yes. She's the one who absolutely shocked me when she authorized THREE staff members to go to the RDI 2-day conference, when I'd been asking for only one.

It's things like that, that make me want to try to work with school. I can't undo the regression Vince has now, but if they want to develop the right program for him, then let's do that, move on, and I'm going to make sure I never 'fall asleep' even if they're at the wheel again.

[lisa6wks]

Mili,
He (the super) may not have had much to say because he felt he needed to talk to Vince's school before he made any comments to you. I know there are some supervisors who will back up the school personnel to the the parents and then go to the personnel and in essence say "What the H**** is going on here?" You may find something happens now that you have made this call. (fingers crossed).

I keep trying to put myself in the place of the people working with Vince and figure out why they are saying and doing some of these inappropriate things. I have to admit that I had one student the last two days of this week who was really getting on my last nerve and I may have been unfair to him. Can't excuse it, just have to do better next week. It really sounds to me as though the school needs to be more communicative with you when Vince gets upset.

Have they ever given you a reason for why Vince is not in the regular ed setting as is stated in his IEP? Even a bad reason? or as to why he is regressing in his academics? Seems to me that the answers to these two questions are really important and might supersede the rest of mess they have going on there.

I like hearing about the things Vince says to you, I feel like it helps me understand him a little more.

Lisa

[milivica]

I haven't even gotten acknowledgement that he has regressed, that his IEP is not being followed...I have stated that this is what's going on and everyone looks at eachother, no one says anything.

Next meeting, I will ask for answers...so far I have not, I have just been sort of 'flat affect' about it all, stated what I'm seeing without emotion, just as a matter of fact thing. I assumed everyone would kick into gear, the opposite happened.

I can understand the super not commenting, but, cannot understand not even wanting to see Vince with me, that kind of thing. The last Super was SUPER, he whizzed out to school, totally recreated his entire school setting and put it into place over a weekend, boom. He thought of things I'd have never thought to ask for. He knew people, period. No matter what their neurology age or gender, he knew people. Anyhow, as for the new super, I wouldn't be surprised if you were correct and he got on their cases, OR, told them to batton down the hatches and give me an even harder time. Dunno. Have to wait and see.

For now I think my effort needs to be put into 'proof' on 'paper' using his IEP's over the years. I'll make a point by point list of each part of the IEP not being followed. Also, a point by point list of what problems I see that impeed his learning, and ask what evidence based practice they are using to prevent the escalation and reoccurance of each behavior significant to impeeding his education.

Or somethin like that.

I'll tell ya's. I stayed up until almost 4am last night having the time of my life, of all things, cleaning fish tanks. I'm really sick of this stuff...I need to learn to not be so absorbed about this every waking moment. Dh said I woke him, I was having some kind of dream and he said I was yelling "I need to do this...I have to get this done....Vincent....how am I going to do this" and lots of unintellegible stuff too. I have no recollection of the dream at all.

Anyhow, I need to be more able to sort of 'punch out' mentally from this, but no matter what I'm talking about, this continually beats on my mind. I need to focus on other things - be nice if it turned out to be cleaning not only the tanks but the organizing and cleaning house completely as well as finishing the bizzillion projects I've started and never finished, how revolutionary that would be for me, hee hee.

Oh and about you getting cross with a student on your last nerve...see, the way I feel, if for instance the teacher that told Vince I was late said it in a cranky way or angry way - so what. I totally get it that teachers are human. I don't expect perfection, just comprehension. I need to understand is all, at this point. I will be asking for changes by the time we have the next meeting. That's the SCARY part. No way will they agree with what I have in mind, and I don't have it planned out yet well enough to post it...basically it just involves including RDI at school, doing things the RDI way.

Talk to you all later...I'm sure you'll hear from me more about this by no later than monday.

Mili

[milivica]

I get Vincent's schedule home every day now, either for the next day or the one he just had. My hope was to know where he was at school so I could observe when I needed, and, get a handle on how many minutes per week he spends doing what. There are some things on his schedule that need a little more definition...it's written so the teacher can understand it, but I can't...actually can't read a few of the words too.

**Sigh**

I did notice he has a time slot for 'Social Skills'. I have no idea what that means, so I'm asking to observe it. I hope this won't be a nightmare getting to see, bad enough I'm followed to observation and sat with in class so they can watch me observe, it's wierd. So, my brief letter to school. :D

I noticed Vincent has something called 'Social Skills' on his schedule. I'd like to observe that the next time he has it. If I'm lucky enough to have my husband home from work, he will observe with me. This would be his first time observing ever, and my first time observing 'Social Skills'.

Thanks,

I'm guessing it's ridiculous. A bunch of 'if so and so does this, you do that' or stuff about when to say please and thank you, etc... which sadly I used to try and teach him myself before I realized it's the CORE deficits I need to help him with, so he'll automatically know what to do socially. Know what I mean?

Anyhow, nice and quiet on the home front. Lots of crazy dreams though, but no scarey nightmares.

[Isabelle]

Don't forget to mention another positive point of your request to observe Vince in the school if for you/hubby need to observe because you want to keep consistent with the school at home.

[milivica]

Don't forget to mention another positive point of your request to observe Vince in the school if for you/hubby need to observe because you want to keep consistent with the school at home.

Yep, that would be a good thing to 'say'. But I need to find what they're doing appropriately to want to do it at home. I totally don't mean that to sound snotty, I know lots of people are trying, I'm not seeing the efforts work for Vince though...but still hoping we can all work this out.

I want to so badly in fact, that I'll begrudgingly go along with the advanced notices to observation and being trailed into class and sat with so I can be observed observing (wouldn't 2 adults there be more distracting than one, the assoc. prin. and myself...I mean, their about not wanting me to observe is distraction to students, right?).

Anyhoo.

[milivica]

I wrote this:

I noticed Vincent has something called 'Social Skills' on his schedule. I'd like to observe that the next time he has it. If I'm lucky enough to have my husband home from work, he will observe with me. This would be his first time observing ever, and my first time observing 'Social Skills'.
Thanks,

then got this response:

Lisa,

You have asked to observe the social skills group which takes place in a special education environment with four students who have IEPs. I believe that this would be disruptive to the ongoing learning environment. I do not believe it is necessary or appropriate for you to observe in this situation. I will ask (Adolf) to provide a description of the major curriculum units.

so I responded as follows:

This denies my husband his first opportunity that he has ever requested, to observe his son at school since the year 2000, six years. As for myself, I would sit in the back and not utter a word as before. It is necessary for my husband and I to observe in order to be fully participating members of the IEP team. I have observed him less than three hours so far this year, my husband has to date never observed him. Our intention is to observe 'one school day' before our meeting, so we may participate fully from having seen one day at school (broken up in segments, such as this observation).

Although we are not required to, we have honored the accomodation you requested for prior notice. Although there is no school policy stating so, you have followed me through the halls to and and from observation, your or the principal are present every minute I've observed in addition to the school psychologist one day with you.

I have previously sent volumes of emails regarding this issue, including copies of federal laws regarding my opportunities to volunteer and participate in my child's class which have always been denied us, and to observe classroom activities. You are refusing all three, you are not complying with federal, you are denying our parental rights. Were his IEP being followed, were he making appropriate progress, were evidence based practices currently being implemented to prevent the escalation and reoccurance of behaviors impeeding Vincent's progress, we wouldn't need to visit.

We don't blame anyone there, know staff tries, but trying is not the same as achieving for him. My son has regressed in some areas, has not progressed appropriately in others. We are caught completely off guard by this, we thought everything was going fine. Last we informed before the end of last year, he was participating in the general curriculum with his class unaided for parts of each day.

I've said this in email after email, both my husband and I said this in person to you. We don't care about digging up the past and pointing fingers. We want in the here and now to create an IEP with the team in which my husband and I can be fully participating members, an IEP which meets Vincent's needs that result from his disability to enable him to (as last year) be involved in and progress in the general curriculum, an IEP in which progress will be measurable and followed by staff.

I have asked, been patient, and even begged. I have ignored insults, tolerated harrassment and intimidation tactics put in my path. I've really tried to work this out within school, I can't state that strongly enough. And I still would like to do that. If you choose not to work within my parental rights, my right to be a fully participating IEP member, please send copies of his IEP's (excluding the current one) for 2nd, 3rd, and 4th grade. I will seek outside assistance. I'm left with no choice.

I'm just sick.

God, give me the strength and wisdom and all I need to follow through and do what is RIGHT and proper for my son and only that. Do not let me become a part of having hate or malice or anything wrong in my heart, only what is RIGHT. More than all the things I want for him, help me to do the things You want for him. I will trust Your Will - but please give me the endurance to fight for that Will. I know You help those that help themselves, I can't expect you to float down and make things easy. Allow my endeavors and their outcomes to help other children as well. All children on the spectrum are the brothers and sisters of my son, and their mother's my cousins. Dear Lord, please hear my prayer. Amen.

Thanks all for letting me punch out a prayer. I'm ashamed to say I rarely 'formally' pray like that. I'm really reeling over this. If God is anything like I picture, I wonder if he feels like he's working in a complaint department. I seem to only talk to him when things aren't going so well, and I'm pretty sure I'm not the only one. What can I say, I'm freaked, I feel a deep sense of dread and being overwhelmed. I just want to do what's right for my son. And it seems everyone always has ways to get away with things that aren't right, and I don't know what to do to make sure my son's present and future isn't one of those things. I'm scared to death, I want to retreat, but I'm like a rock going down hill and can't stop rolling.

Thank you all very much for being here...even though I haven't hit 'Submit Reply' yet on the bottom of the page, I feel like I'm talking to all of you all at once right now.

Thank you, thank you,
Lisa

[milivica]

FYI...THIS WAS MY FIRST RESPONSE THAT I DID NOT SEND:

Ah. Yet the janitor coming was not considered disruptive to the ongoing learning environment. Can I then draw the conclusion, that I may observe if I wheel in a gigantic gray cart that holds cleaning supplies and smelly garbage, while coughing, clearing my throat, emptying the garbage and continually crinkling the plastic garbage bags.

[peglem]

Amen.

I'm guilty of the "no athiests in the foxhole" practice myself. I sometimes wonder if God sends crisis to push me back in his direction. I pray regularly, but never so ardently as when its for my child in crisis.

Geez, Mili, I'm sorry this is so tuff. How does she know if its neccessary for you to observe? Hang tight, Lady. There will be a good resolution to this.

Allie will be going to a different school in January, which is my answer to prayers about crap at her present school. Mine was a shorter crisis, though and not such a big battle since I've got someone on my side (well Allie's side) from district office. It might have had to wait until summer though- but looks like we're on our way after Christmas break!

[milivica]

I'm thrilled and energized to know there can be light at the end of the tunnel, gold at the end of the rainbow. It seems rare to hear a story like that. I love it. It means an appropriate education is attainable.

If I was aware of a school that would meet his needs, I'd try to have him move to it. I'm not aware of any such school. I like and admire the staff there, and am perplexed by how I'm being treated. My only guess, is they must really be doing things wrong, feel they need to not let me find out more than I already did, cause it must be really bad!

I will hang tough, do what I gotta do, and hopefully make all the best and right decisions for Vince.

-----------------------------------------------------------------------------------

edited to post the email I just sent to the Superintendent:

____________, I called you last week for help. I explained his dad and I wish to observe our son Vincent Clayborn at school, so we can finally be a part of creating an appropriate plan for him. I further expressed my concerns to you that his dad and I have about the behaviors and noncompliance he exhibits at school, but not at home. I expressed our confusion and fears about his regression at school that I only recently uncovered, and the school's unwillingness to permit me to observe, and now their refusal, for what has been a revolving door of reasons.

I explained to you how the last time difficulties arose, ______________ absolutely created resolution that was far and above anything my husband and I, being inexperienced, could have created. I asked you only to visit, to see my son in his school environment, to perhaps help bridge our current gap with his program and our communication with school. To my great dissappointment, you were not interested in even an observation of my son, and said you'd prefer to do this on the lowest level possible. I tried again, and again, have gotten no where.

Will you please step in, and help bridge this gap? Please read my last request to observe, the refusal to it by the assoc. prin. and my reply is as follows:

(then I put my request to observe 'social skills' time, the school's refusal, and my long reply that you can find about 3 posts above this....you know, mine and school's last 3 pieces of correspondence)

[Pamster]

Wow this is bad, I can't believe they are giving you such a hassle about coming in to observe the class! My son's school is open to such a thing and I could drive down there right now and ask to sit in class for a few minutes and they wouldn't have any problem with it. I've done it before and I probably will do it again. I'm so sorry they are fighting you tooth and nail like this but I think your instincts are right and he's not getting what he needs there for some reason and they are afraid of the scrutiny you & your DH observing Vince in Social Skills time would put them under.

I wish there was more I could do then just sitting here reading your posts and offering cyber hugs but here's one anyway Lisa.

(((((((((((((((Lisa)))))))))))))))))

I hope you get to see this Social Skills time in action, something has to change so that Vince's needs can be met and he can keep on progressing.

[MaryEvelyn]

Ok this is starting to piss me off. If they are not giving him the required time in the Gen. ED. setting don't they then have to make it up in some way? I mean the IEP states so much time in the Gen. Ed setting so they are required by law to accomplish this aren’t they? I wish I lived near you I would go with you to the IEP (((HUGS)))

[MaryEvelyn]

Ok I sent an e-mail to Dana4kids she is the one with the IEP stuff maybe she can help.

[milivica]

Thank you Pam, your (((hugs))) and support mean the world to me.

Thank you MaryEv, Dana is a good idea she seems to know lots about LOTS. As far as I know, the IEP is a legal contract like any other. What I'd like to do, should the Super not help which I don't think he's interested in doing, is call for Due Process. I have to look up how to do that - I used to know. I think we will then first have mediation. I can't remember, but I'll look it up on Wright's Law.

Well, I stayed up all night. I'm trying really hard to focus on other things. Keep busy (which is never hard, no shortage of unfinished projects here!). I didn't quite make it home from the grocery store just now, and tears were streaming down my face. I wasn't crying really, but I guess I was so filled up with feelings they had to leak out or something.

God, what happened? Am I such an idiot that I was not properly evaluating staff and really they've just said stuff to pacify me and laughed behind my back? I never was real too good at reading between the lines, putting 2 and 2 together and all that. What happened to my kid participating in his regular ed class UNaided part of the day last year? The kid doing three digit addition and carring in second grade, who now can do only add single digits in fifth? So, I'm just kind of confused overall about everything now, dunno what I really did see or know then or now about Vincent's school life. Know what I mean? Like I got the rug pulled out from under me.

But whatever, I'm going forward and going to do what I can do. And maybe listen to music other than Dido cause that's probably not helping the tears thing.

I don't want anyone to worry that I'm wimpy or feel bad for me in that way. Trust me, if I knew what to do, how to approach this kind of thing I would do so, by the book, regardless of my sentimental feelings about so many staff there. If I had a competent attorney to 'handle' this all and advise me of how this works I wouldn't be so fragile feeling. I'm not afraid to fight, I certainly do not want to though. But I definately am not concerned about fighting when it comes to doing right for my child. I just don't know what to do is all. So I don't want anyone to worry about me like 'that' way.

[peglem]

Mili,
Do you think you could get help here?

http://www.cesa7.k12.wi.us/sped/wsems/index.htm

Where is your son's teacher in all of this? It occurs to me that I haven't heard about her at all. Does everything go through Adolf instead? I can't imagine there being so little communication about a huge problem from the actual responsible party. Also, going through Adolf all the time- seems like you'd only be getting 2nd hand info, which muddies things up considerably.

I know the bursting out in tears thing. When my daughter was in kindergarten in the district's sped program, there was an awful, horrible problem. I felt so angry and hurt because there was definately deception on the part of the teacher and principal, I could not even make a phone call to someone about it without breaking down. I was advised by some very knowledgeable people to keep everything calm and matter of fact- but this is my precious child being screwed over! I started a meeting by informing them that I would try not to get all emotional, but that it was very difficult not to when my child's future was at stake. They don't have a personal stake in this- parents do. I still get rather livid thinking about the whole thing, even though it had a good outcome.

You should not have to monitor the school to make sure they are doing what they are supposed to do. The IEP tells them what they are supposed to do and they should be informing you of his progress on the IEP goals and letting you know if they think modification is needed. If they goofed- the ADULT (never mind the professional thing) thing to do is acknowledge mistakes and go about repairing them- not making excuses and playing hide and go seek with the parents. Why does this have to be so stressful? Good for you for keeping the wheel squeaky until it is fixed- but they seem to be continually ignoring the squeak. This won't last for ever and you are at least getting a better idea of exactly what they need to do for Vince (even if you can't find out what is being done now!) Maybe you need to AMP up the squeak, by requesting IEP meetings as often as you can. Sometimes you just need to make it easier for them to work with you than it is to ignore you.

[MaryEvelyn]

http://www.danasview.net/


I knew if I looked long enough I would find it Dana4kids site.

[milivica]

Hi Peglem...'Adolf' is the case manager who creates his daily schedule, his regular ed teacher was at the IEP I called on 10/24/06 and was told he would not need to come to the next 'meeting' in the beginning of December. I assume this is cause he really has no insight into Vince cause he spends so little time with him in class. Too bad too, cause I REALLY LIKE his regular ed teacher very much. To me, he clearly wants Vince to be a part of things there, and is deeply committed to kids that are 'different' not getting teased or picked on. I think he's a real good egg.

I have a question for you and/or Lisa

What does this NCLB stuff mean...does this mean???

Transfers from Failing Schools

If your Title 1 School fails to meet its AYP goal for two consecutive years, all the children in the school may choose to attend a non-failing school in your school district. If all schools in your district fail, you may send your child to a school in another school district.[6]

All eligible children were not able to transfer out of failing schools at the beginning of the 2002-2003 school year. Some districts did not make cooperative agreements with other districts which prevented parents from exercising this option under the NCLB.

The school district may also limit the amount of money it spends on transportation to other schools. If there is not enough money under a designated formula to pay for transportation, the district may give preference to the lowest achieving children from the lowest income families.

If your child transfers to a better school, your child may stay there until he or she completes the highest grade in that school. Your sending school will provide transportation to the school you have chosen until the sending school raises its AYP rate to an acceptable level.[7]

Supplemental Services: Free Tutoring, After-school Programs, Summer School

If your Title 1 School fails to reach its AYP goal for three years, your school will provide supplemental services to the children remaining there. These supplemental services include tutoring, after-school programs, and summer school.

You may choose a tutor, or other service provider, from a state approved list. The state will ensure that all providers on this list have a history of success. Children will receive these services at no cost. Again, under a formula, the district may give preference to the lowest achieving children in the lowest income families who request supplemental services.

There is nothing in NCLB that prevents the school from providing transfers and transportation to all children in the failing school who request it. There is nothing in the law that prevents the district from providing tutoring to all children in the failing school who request it.

If

Title I:
Vincent's school IS Title I eligible.

But:
IS NOT a school-wide Title I school.

what does the above, mean for Vincent, if anything????? Is he entitled to any of this by school. I'm lost here. Can you splain it to me in ingleesh??? How do I know if my school is meeting it's AYP goal for each year? What is the difference between being Title I eligible but NOT a school wide Title I school...huh??? Sounds like 6 of one and a half dozen of the other.

[peglem]

Here is another possible contact:

http://www.dpi.wisconsin.gov/sped/parent.html


And you might want to study the info on this site- all about Wisconsin's SPED improvement plan.

[peglem]

Let me try to translate:

Under NCLB the states have to develop a school rating system to determine which schools are meeting the criteria for improving education. (which here means test scores) They also have to make these ratings public, usually on the school, district or state's webpage, but also through mailings and often newspapers. What this means for Vince, is that if his school has been rated as Failing to make AYP (adequate yearly progress) you can remove him from that school and send him to another IN DISTRICT school that is not rated as failing. If all district schools have a Failure rating, you may send him out of district. I'm not sure how this plays out in reality- F'instance, nonfailing schools may be able to say they are full and can not accomodate out of area students- but, the funds usually follow the student, so they may take more students than they can realistically accomodate. I'll try to find out where you can get the ratings for schools in your state.

Sorry, don't know the difference between Title 1 eligible and schoolwide title 1. In order to be designated a Title one school, there has to be a certain % of students at or below federal poverty level. This designation comes with $$ to provide certain services- not sure the whole scope of services that title1 funding covers.

I would insist that the regular ed teacher come to the meetings- he is likely to have some valuable ideas about inclusion, since he would have to make adaptations and accomodations for Vince's inclusion. If the IEP requirements are not doable for him, they are not likely to happen. Why would they not want the input of the person who has to deal with the final decision? In the district I was in (or maybe statewide?) All IEP's that involved inclusion, had to have a regular ed teacher on the team. But, what about his SPED teacher? Do you not have direct communication w/ him or her?

Okay, I'm going to find that rating info for you.

[Keggy]

coming in late again....sorry:( .. but what does it matter if the school sucks? Lots of our kids are cross districted without the school having failing grades.
i know... i don't know whats going on ... too many pages to read. I did see you mention due process and I got to tell you... be careful!! that can be a long, arduous, expensive process.. and even though you think you have an excellent case you can loose.
I saw a parent do this once and the hearing officer would not render a decision for almost 3 years. By law he had 30 or 90 days... didn't make a dif.
Whatever the problem is there are lots of ways to fix things before taking that route.

[peglem]

Alrighty- Wisconsin makes this info hard to find, but:

http://data.dpi.state.wi.us/data/SchoolScript.asp?SEARCHTYPE=SC&L=V&

choose your child's school from this list and when you get to the school page-scroll down till you find the link for AYP report.

Also, TITLE 1 eligible I think means that they get title one funding for some of the students, but do not have enough title 1 eligibles to qualify for whole school title 1. If you child qualifies for free or reduced price lunches, than they probably qualify for title 1.

[milivica]

Peglem, thank you for doing all that searching - I have to look up ALL of the sites you gave me in detail. I recall the word 'Cesa' and am sure it's great...just don't remember what it is, but I think it's simular to Wright's Law, gives tons of info, that kind of thing. I looked up my school on the last site you gave me, my school's AYP was Yes and Satisfactory for 2003-04, 2004-05, 2005-06. (gawd how the heck did you even find that site!).

Now, I probably have not explained this well enough, let me try...'Adolf' is not only his case manager, but his SPED 'teacher' - however - the vast bulk of his day, I'll wager to guess 90%, he is with aides who are teaching him using Direct Instruction (also the only way I could teach, I love DI) and if he does manage to get to his regular ed class that day, which he did only 2 days last week, his aide sits next to him, I can't say he got anything out of it.

Keg, I hear you, despite the length of this monster thread, either read it, or take my word for it I have tried my level best...you'd fall over if you saw the stuff I ignored. Currently I'm fighting just to be allowed to OBSERVE. I can't even begin to participate in arguing for changes to the IEP (which is not being followed) or his regression until I can participate with dh, so we can really brainstorm and think and have discussions with eachother, his RDI consultant and therapist to even give suggestions. I get it that even if I had the 'perfect' quickie legal battle, school still could just not do what they've been told to by court, I've seen that happen. But this is not only about Vincent, but those children to follow in this district, state, and in this country - I just don't have it in me to take SO MUCH LESS for my son than he deserves and is legally entitled to. So if I totally lose my fight for him...well I hope it won't be a fight, but if so....at least I know I tried like the many parents before me who even made the IDEA act possible fought and tried. I owe them to not just piss away all their hard work, I owe Vince too.

Can I get a 'You Go Girl!' now? While I'm still awake (I'm so pooped in every way).

Mili

[Pamster]

You GO GIRL! :D

*is happy to oblige some back patting on Lisa*

[peglem]

Sorry, i have no idea what "cesa" is- that'a some Wisconsonian acronym, but it sounded to me like they have delegated parental participation to liasons who are responsible for certain regions of the state- I didn't read everything on those sights- just enough to see if it looked like useful info for you. I did read a substantial portion of the state educational improvement plan-well, the parent participation part. And it looks to me like its one of those "make it officially look like we're doing this" documents. Train the parents so they know how to participate in an IEP meeting- that sort of thing-which, I think is ridiculous- if its to complicated for them to explain to you along the way, then they need to find a way to make it simpler. I think parents would be better served by a class entitled "How To Read Between the Lines to Figure Out What Your Child's School Really Means." Or- maybe, just maybe, they should just say straight out what they really mean...nah!

Well, get some rest Mili and.....YOU GO GIRL!

[milivica]

I have no idea what CESA means, I saw the word in one of your links so I thought it was the site to CESA. I vaguely remember liking the word so I must have had a good experience with CESA. I did a search, puttered around the site and found this which I can really work with...I recommend everyone look at it:

http://www.cesa7.k12.wi.us/sped/autism/05/g_o.htm

To this, I would add (on the bottom where it says Strategies to focus on Goals/Objectives) training in RDI, video consultation 30 min e/o week with RDI certified consultant who will provide written feedback and guidance.

Or somethin like dat.

I am so stinkin pooped, I still have to do 4th grade homework with Carmen...aaaaaaack!

My brain is officially numb...I have to post more either way later, or tomorrow.

Mili

[milivica]

Ok, well I take this as bad news. I got a letter back from the Superintendant. It makes it sound like school is being great to me and I'm being a total pain. He gave two alternatives, seek legal action if I 'feel' they are out of complaince with the IEP...which they are, but I don't want to go there. The other bit of advice was reconvening another IEP to express my concerns. Anyhow, the letter is below: (OH and btw...another mom with a kid with autism there was told 'you are welcome anytime and observe').


Good morning Mrs. _________,

Thank you for your email. Mrs. _________, I have absolutely no recollection from our previous conversation that you requested me to observe your son in his classroom environment. I have no formal training in special education or in working with children with autism so my observations would not contribute any meaningful or useful information or suggestions. Additionally, I have communicated with both principal_______ and assistant principal _______ regarding your son. What they describe to me are concerted efforts on the part of the school to communicate with you including frequent emails, phone calls, letters and I believe at least one extended visit with you over coffee at a coffee shop.

We absolutely want to partner with parents to create the best environment for children. There are limits, however, to what we will permit. My understanding is that you have made several visits and observations to the classroom in the past weeks and that some of those have lead to disruption to the education of other children in your son's class. We do have a duty to teach the other children in the same classroom as your son and it is reasonable to allow our staff to perform their duties without interference or interruption. Furthermore, we cannot permit a parent or another student to detract from the learning environment of the entire class. Additionally, in many instances there are other special education children present and we must also be cognizant of the same rights of privacy those children and their parents that are extended to you.

It is always my goal to have problems resolved at the lowest level as that is were the deepest level understanding of the situation lies. If you believe there are or have been violations of the terms of the IEP and you believe the IEP team is not making a good faith effort to meet the terms and conditions of the IEP, there are legal means for you to seek remedy. My advice, Mrs. __________, is to reconvene a meeting of the IEP team of which you are a member, express in unequivocal terms what your concerns are, work with the team to establish benchmarks for progress, work with the team to establish a reasonable means of reporting progress or lack of progress on those benchmarks, work with the team to establish a reasonable set of expectations for the form and frequency of communication which may include periodic IEP team meetings and or short, scheduled visits to the classroom by you and allow our excellently trained staff to work with your child as they want the best for him also.

Lastly, know that I am certainly willing to meet with you and your husband, as I would meet with any parent who made that request of me. I would include in that meeting minimally ________ (principal) and Mrs. ________ (asst. prin.) Know however, that I will not be conducting an observation of your child in his classroom environment and I will not make any modifications to Vincent's IEP as that clearly would be in violation of the procedures inplace for IEP development.

I have included the administration in this email as well as Director of Student Services, ____________ on this reply.

Most Sincerely,

-------------------------------------------------------------------

So, I then wrote this to school:

I am requesting an emergency IEP, per the advice of (superintendant) ____________.

"My advice, Mrs. _________, is to reconvene a meeting of the IEP team of which you are a member, express in unequivocal terms what your concerns are"

Should my husband not be able to attend, I will again bring a tape recorder.

I will have an agenda for the meeting prepared in order to express my concerns.

---------------------------------------------------------------------

I have an appointment on Monday with an outside source that understands IEP lingo, to help me sort through the IEP, and highlight with me where they are out of complaince. I could care less about pointing this out, and would rather focus on creating an appropriate IEP, as well as getting his 3 year eval. done which is SIX MONTHS overdue. I mean, I could pick and nitpick the infractions school is doing/not doing to death. What a waste of time, but I guess if they are unable to see they are out of complaince with the IEP (which I know they can see) I can point that out. Primarily, I want to have ready and offer my suggestions regarding what needs to be done NOW to create an appropriate learning environment for Vince. He needs to be able to attend, to learn for instance...he needs an (oh yeah, school wrote a letter asking what evidence based means) evidence based practice to prevent the continuing and reoccurance of his inability to attend - other than saying "look here" and "we're not talking about that now" every time he gets off track which is every minute or LESS...cause that isn't working.

I really feel not like myself at all. Do you know I got a letter from school that makes them out to be saints and me a demon. Says stuff like "Vince comes to school tired and hungry every day". I mean, the hungry part I believe cause he is hungry all the time - but it makes it sound like I don't feed him breakfast which I do every day. And tired? How many 10 year old's have a 7:30 bedtime? I do that so he's actually done with getting glasses of water etc... by 8:00. He get's up at 7am. He is usually asleep by 9:00. Anyhow. Please excuse me if I'm off for a while. I feel like I lost myself and, I just don't feel well. I'm not in a good place. I say all that just in case I forget to sound thankful and greatful for all the effort everyone has put into this. And, I know this won't last forever. I just feel doomed or something, hopeless. School will win and Vince (and I) will lose. They'll pass him through, I can't bring back these years once they're gone. I don't know what to do next. I really don't. We can't afford a lawyer, no way. I'm just, lost or something.

And I have NO IDEA what they mean by continually saying I was disruptive to the kids in class. I sat there in the back of the room, silent. Everything school writes just makes me sound really aweful.

[cckids]

That is such a bunch of BS. When we enrolled Zach in ECDD programs, we sign a contract every year similar to HIPPA and that acknowledges that any info pertained about our child by anyone observing in the classroom will remain private. It's not like you are reading the other kids IEPs. F- them.

I have noticed this a little bit in our son's schools also. Especially the behavioral issues going unaddressed. There is one boy who goes of the handle and is assaultive to the staff all the way down the hall everyday. Yet all they do is try to drag him by his arm, etc. to get to the bus. I do not see why they don't basket hold him (he's probably 50lbs or less) until he regains his self-control. He needs to stop the behavior or have a consequence.

I'm sorry, but if schools are required to accomodate ALL kids and managing behavior is part of that. Most places say they use a time out policy, but upon all my observations I have never once seen a teacher use it. I don't know how the law backs them up or not. One day when dropping off Zach he had been extremely assaultive and in basket hold multiple times that day (he was anemic from a post-op bleed, probably feeling tired, and although medically stable he was out-of control). I flat out told his reacher that if she felt he was a danger to staff or other students to call me and I'd come get him immediately. I debated over and over that day whether to admit him to a psych hospital,but I really do not want to (since I work there). It's not that I fear him being there; I trust the staff and sometimes the interventions really help when behavior modification needs to happen ASAP. It does give 24 hour consistency in staffing expectations.

Good luck Mili...you are in my prayers with this one and it sounds like you are taking the steps to educate yourself and get this done right.

Will they use a behavior plan which spells out if ______does X the consequence is Y.

We use them at work...
example.

Purpose: To decrease defiant and attention seeking behaviors

1. Patient is to be given a minimal choice for each task. You may sit on the blue ball to color or sit on the wood chair. If pt. refuses then pt will be given the choice to take a time out by the wall. If pt continues to refuse to do correct behavior or take time out then pt will be walked (escorted) to the time out room.

Even 15 year old kids have the same expectations. They hate to have to take a timeout just as much as a 5 year old. Often the first few days can get combative with all the time outs, etc. Then it normally starts to come around.

Good luck....

[milivica]

Deeeeeeeeeeeeep Breeeeeeeeeeeeeeeeeeeath....

Ahhhh. Feeling better.

I have received information, and 'may' receive SUPPORT FROM A STAFF MEMBER, that the difficulty I am having with school is directed personally at me due to the principal's personal vendetta against me (we do not respect eachother aka I do not have the art of 'kiss her butt') and get this, the KNOWN fact that Vincent indeed is NOT MAKING PROGRESS and they are indeed NOT FOLLOWING HIS IEP.

I won't here or even privately reveal the staff member. However. I ran into the staff member tonight, who hedged around the topic nervously, then contacted me later to spill it! Should this staff member no longer work for the school I will take legal action against the school/principal and subpoena. I will not take action against those covering for the principal, and no I don't know why, it just is how I feel about it. Anyone covering for the principal will have their conscience to deal with, it must be horrible selling out your morals, that's punishment enough.

I'll talk more later...dh just got up for work...can't concentrate...have to update him.

[Isabelle]

Mili, when you have exhausted any legal recourse or avenue at your disposition. Contemplate this solution for a few years.

Home schooling with a tutor.

[The Pogue]

It means Cooperative Educational Service Agency.

They provide services and resouces to districts too small to provide on their own.

[cckids]

Our teacher referred us to this site for visual schedules and it has tons of otehr stuff regarding IEPs, etc. http://trainland.tripod.com/links.htm


I thought of this forum immediately when seeing the title....

Welcome to

Facing Disability Issues with Combustible Humor
Advocating for Disability Rights ... We Will Not be Silenced !!

http://www.mothersfromhell2.org/

[NaughtyMouse]

Milivica,

I'm very sorry to hear what you're going through right now with your school. I think that fighting with my local school was the most painful thing I have ever endured - and I know there are aspects of your situation that make it even more difficult than mine, so I am really hurting for you.

It sounds like one thing they are doing with these letters is setting up a 'paper trail' that makes them look good because they want to be in the best position if you ever did take legal action. So the things they are writing are not necessarily for the purpose of communicating anything to YOU, but, rather, for what they would communicate to third parties that read them. (Perhaps you already know that, even if you didn't state it explicitly.)

It also sounds like they want to use any further IEP to set limits on how much time they are willing to spend communicating to YOU ("a reasonable set of expectations for the form and frequency of communication")

I guess the one encouraging thing I can say is that I honestly do think that the one-on-one RDI work you're doing with Vincent at home may in the long run be more important than anything the school does or doesn't do with him. I do remember my DD losing a couple of months of progress in her ABA program when I spent time negotiating with the school which severely cut into my ABA time with DD. My RDI work with my DD seems to be quite helpful in facilitating her continued progress and I really think that your work with Vincent is likely bringing about good results too that will help him in the future.

x<BO~

[milivica]

Hi Isabelle, I'd love to do the home schooling thing, but there are several reasons why that won't work out nearly as well as school doing what is right for him. I hope you know what I mean.

Hi Pogue!

Hi CCkids,
I remember that last link you gave me, and will check it out but can't tonight or I'm sure I'll be up all night again.

Naughty,
Yep, it is painful, and all encompassing every thought every moment. Dreams too now. And guess what, I DID NOT think about their letters to me more being about a paper trail to make themselves look good in case of legal action. Very good point. That's what I loved so much about (I think it was peglem) what someone here said about saying: please keep records of when I am disruptive so I can know what I am doing wrong, since it is not ever my intention to disrupt learning. Tuesday, I will say that then ask specifically what it was I've done so far, so I won't do it again. See, plus, I can't observe him in the special ed environment cause of the 'disruption' to other kids, but that's the only environment he's in! So it's a catch 22. They say me being there identifies the other students with an iep...duh...don't you think anyone at anytime during school that sees a child riding a three wheel bike in the hall with their aide, or eating lunch navigation ear muffs, identifies them as an student with an IEP to anyone at anytime that so happens to be at school?

Anyhow, I have an appt with his state case manager tomorrow. She is really trying to be helpful in this. I'm just sick from trying to reinvent the wheel here. Isn't that what federal law/IDEA Act is for?

What's left to do, when you are dealing with ppl that are real good at social tactics and bureauracracy? Guess I need to start hunting for an experienced lawer, but, unless there is grounds to sue for money, we can't pay a lawyer. ALSO, I had a thought at the 4H dinner I took Carmen to tonight....I wonder if I could, instead of finding moms with kids on the spectrum (who believe it or not I 'think' are afraid to come, to rock the boat) to find moms who I think would be supportive, who might be shocked to see what 'us' moms go through, to come to my IEP next time. There are two moms in my daughter's 4H, one in particular that stands out as going out of her way to be nice to me, and another that stands out as a strong outspoken butt kicker for good. Anyhow, I might ask them. We'll see. They have older kids in our district. Like me, the 'butt kicker' said she had some trouble with her oldest son once, called the (old)Superintendent and he fixed everything.

[Mother's Heart]

isn't there a PAA protection and Advocacy Agency in your state? They are the ones who handle SPED due process here, pro bono.

OCR? office of Civil Rights come into the picture anywhere? a call to them gave me contact information adn sheets of educational information for me, explaining what types of problems WERE problems which could be addressed by them or by PAA.

[milivica]

Yeah, I'm going to have to do that too...I'll ask around for direction with that one. My friend left a message for me telling me where she went to get help with stuff like this.

See, last time an advocate 'helped' I sat there in disbelief a lot of the time wishing she'd shut up. For instance, neither school or I minded using money rewards, he was into penny's then (for spinning not spending) and the advocate was all for food rewards instead. I felt like throughout the meeting, she had no clue what I wanted, she chose what she thought my child should have without knowing my child. It was not too good an experience.

We have this guy in the senate, I can't recall his name or status but he has a real nice chair so I'm sure he's big...anyhow, during some hearings they were having about special education, I spoke. He said many things that led me to believe he has no concept what so ever what our kids are like, but believe they are well cared for and he sees them flourish with their ear muffs on the playground in August with the other kids, blah blah blah. I'd love to find out from my friend on the task force, who knows ppl in the senate that think our kids are getting FAPE, to come to the bullcrap I'm going through, and the lost years Vince cannot get back.

NO wonder the kid is so angry, he's around adults nonstop, every second, he CAN play with other kids....they just would have to be older to understand and have a few things explained to them. Or younger so they'd think they were cool cause Vince being such a big kid was willing to play with them.

Vince actually broke up a fight yesterday, it was hilarious. I assume a brother and sister, both fighting over the other's toy when each already had one. He got between them, pushed them apart from one another, told the little boy, "you know girls are emotional, they got all these emotionals and they float in their blood just let her cry cause if you try to help she will smack you" then told the girl, "you know boys drive you nuts cause they got too much energy and not enough blood in our brains but I can't tell you where it is cause it's private but we can't help it" and the kids (about 4&6) actually stopped fighting.

I sat there struggling to remember the precise words I used, that he got that meaning out of it, but I think those were pretty close to what I said. I do seem to remember saying something to Vince when he does 'stupid' stuff revolving around girls...that it's not his fault cause the blood from his brain is in his wienie so he can't think well at the moment. Or something like that. Of course, the next time his wienie was soft he wanted to know if his brain was having 'puberties' now.

Gawd!

Ok, my sleeping pills are way kicked in...I hope I made sense tonight. *worry*

[Mother's Heart]

rotfl!!!!!
I LOVE vincent!

[milivica]

Met with State Case Manager this morning trying to sort through what my priorities will be at the IEP tomorrow.

They're all about Vincent...I need to really narrow our communication to him, not what a bad mom I am etc etc...

Observation will of course be a topic too.

His IEP will and won't be a topic...I mean, I prefer to start here and now and build a program at school that will work for him. I can show them several places where they are not in complaince with the IEP if they still wish to claim they are following it but I don't want to waste time proving what I already know.

They keep asking for me to send concerns so they can create and agenda, I told them again I will bring an agenda, I called this IEP, we can go over their agenda at another date if they so wish to set one.

Vincent's inability to attend will be top of my list (hey, wow, look....no accusations saying it's school's fault he doesn't attend - do they not see this?)

I want to get an agreement about how much just this factor impedes his education.

I want to know what they are currently doing about it, make sure it is evidence based. That's when the subject will change and I'll have to refocus them over and over.

We should easily be able to conclude his ability to attend is virtually nonexistant, and agree we need an evidence based plan to prevent the continuation and reoccurance of this. Till he can attend, what learning will he be able to do? Ya know? It's like putting the cart before the horse. We are putting words and lessons in books in front of someone who cannot pay attention. I will mention that I do not have this problem at home, yet he had terrible problems with staying awake during Karate and Gymnastics so much so he asked not to go anymore. There's something about requesting his attention that just puts him to sleep, so, I'm wondering if to combat that his mind pops and pops with all these other things to think about. Again, not saying it's schools fault, but it is the #1 issue that needs to be addressed.

I'd like to ask what the deal is with him not being in the general curriculum at all, what is the plan to incorporate him into it, is there a plan to do this? why was I never informed he went from being in class unaided part of his days last year, to now not only not in class but never unaided. So, my awareness of his school progress or regression will be an issue, communication I guess you could say.

I'll talk about ESY - despite it being early for that, last year he was unable to go because the bus ride would have been longer than the school time!!! Plus, like hellooooo - Vince is never unaided at school, so how could he manage an unstructured bus ride for 1 1/2 hours a day. Puhleeze. I was told school was going to be at the school he now attends, but it wasn't in writing. Want to get that straight or at least on paper as a concern.

Observation will be last, cause there seems to be no resolution around this one. I will include my statement that I want to know how it is I am disrupting (I have not so there will be no answer) and how it is they fear I will disrupt and to let me know if ever I did cause it is never my intention. To that I will add, that should I notice my mere presence is a disruption to a child I will voluntarily leave, it's not like I'd have to be asked.

I want tapes every 2 weeks for the RDI consultant to receive, and provide vital information regarding how to get Vince to attend. I'll have to word that better, but am sure that will be shot down no matter how I word it.

Frankly at this point, I see no way through this without help from folks that know how to do this. The State lady is looking into this local group we have of mom's that know how to do this and are effective in helping. I might pull out the phone book and start seeing what different laywers that do spec ed type stuff say. We'll see.

I'm soooooo tired! Whew!

OH - more school bs on the front here...I got a pencil sharpener sent home in Vincent's back pack with an unreadable note from Vince. I asked what it said, he said 'Adolf' said he owes her $10 for breaking her pencil sharpener. I'll return it to her at the meeting tomorrow. Under no circumstances should the amount have been mentioned, and, I dare say we need to look up this crusty 1985 sharpener on eBay or something and get a real idea of price here.

Also I got a letter 'answering my concerns' which as Naughty said, is a paper trail...it shows how great they are and how bad I am. Thank God you wrote what you did Naughty, cause I would have really flipped out and been upset something terrible had you not. So I won't bother typing the whole darn thing. It's three pages long....ahhhh, yet another testimate to alllllllllll the extra work they're doing for me, what more do I want? The State lady said this morning that so far per her observations the only extra work they've done for me has been to keep me out of school, nothing that was in any way beneficial. They've worked harder on not answering my concerns and questions than actually answering them. Hee hee. Made me feel good to not be the only one that sees it this way that will be in the room tomorrow.

I'm still consumed with this, but committed to going the distance. What the heck, he'll only be in school another 10 years, right?

Mili

[milivica]

Mother's Heart....yeah Vince is a hoot! He's one of the funnest funniest kids on the planet, and if it weren't for him bulldozing all over others physically and emotionally he'd have more friends than he knew what to do with. The core of my ache, what can I do, to keep all the good fun great stuff coming out of him without him being a difficult kid to be around cause of the bad stuff. Know what I mean?

Oh, and if ANYONE has any things to offer that I should say at the IEP tomorrow by all means let me know. Remember, my focus is completely on Vince - not so much what school didn't do that they should have, but what can they do now. That type of stuff.

I'll also have to mention that since they say I send him tired and hungry every day (yeah, sure) to please keep a log of that and send it to me, so I can send to his doctor since he takes meds that make him tired and hungry. Kind of odd he leaves the car awake and fed and in just a few yards is a different kid - should I be alarmed? Only if I believe that bull.

[peglem]

So, the State Lady (we have GOT to come up with a better name for her!) will be at the meeting with you? That would be sooo coool- just to have someone on your side should boost your confidence, anyway. I'm praying that the Spirit will be with you, inspiring all the right words to get Vincent the help he needs. (This often works for me before doctor appointments- even though I've kinda rehearsed- when I get there it goes out the window and this absolutely brilliant stuff comes out of me that has just the right effect!)

[milivica]

Ok, I'll call the state lady Xena, as in Xena warrior princess. She's like real professional and serious and stuff, nice but proper and quiet. Like maybe 5 feet tall and very petite. However, I suspect if you pissed her off she could be a real fighter - I told her this morning when she (calmly) said this school stuff was making her angry, to go ahead and show it tomorrow!

She came to the last meeting as well. She has really been a very good source of support for Vince, I can see she is truely interested in his progress. She's never pretended to know more than she does, asks lots about autism but doesn't know gobs about it per say. But seems to really be on the side of the child and anyone trying to help the child so in this case my side. His last state case worker seemed nice and I thought we were friends, but she called me obnoxious so I asked for a new one and got this one. She was so professional at first, I thought uh oh, this lady is going to eat me alive but she is a very true person, not a bureauracrat type person.

I would (and do) invite her to any family function such as Vincent's birthday, his IEP's, the trouble I had at his summer camp she came for that too. I think she and I are total opposits, but not in the ways that count. So yes, I really am in debted to her, she's been a true lifesaver for me just being present at these meetings. And should it get legal, she knows how to say stuff in real effective ways. Also, even she said that now in person, having spoken to me several times over these issues at school, she can SEE the difference RDI is making for me - wow! Which is great cause that's more I'll have in me, to share with Vince.

[peglem]

Oh, with the pencil sharpener thing- it sounds like in her clumsy way, Adolf was trying to apply some natural consequences for destroying other people's property. After you find out what happened (and she should have included a note from her, telling you) you might want to find a way for Vince to earn the money to repay her.

[milivica]

OMG, peglem, check it out. I swear we went through this already with an aide that would not get off the topic of Vince owing her a dollar. Things get broken, it happens, especially when the item is in a room full of kids that use it in a nonfunctional way. I have no note from Adolf, no way of knowing if he was the 10 thousanth kid to use it or what. He said he put his pencil in, it twirled, then stopped. I'm super irritated that with all that's going on, this was an issue at all, ya know? I'm currently searching for batteries to put in for Adolf...it does like Vince says, twirls and dies. I have a feeling this is more an issue of a witch hunt type thing. See, now Vince is breaking their property, what a bad seed. Now he won't be quiet about the dollar incident, and left all upset that he'd have to pay her $10...I told him to try and not think about it, we'd talk tomorrow about it for sure. I mean, this is exactly the types of reasons why he needs to work with someone that gets autism.

Anyhow, school is really pressing hard for me to give them what I plan to talk about so they can create an agenda. Last time that happened, I got only the last 5 minutes to talk. Read below:

We are looking forward to having the opportunity to resolve some of the issues/concerns. Please send me the items you want included on the agenda by noon today. I will draft an agenda this afternoon and get it
out to everyone as soon as possible.

I'm thinking...INCLUDED on the agenda? I thought (again) that I called the IEP to address my concerns, how can they have an agenda of my concerns...I'm lost. So, twice I say that I will bring an agenda. I ignore the third and fouth request for my agenda, the last of which looks like this:

Regarding the agenda- Please let us know what concerns you will be raising tomorrow so that we can bring the necessary materials and information to the meeting. We'd appreciate knowing by the end of the school day.

I'm picturing the structure of the meeting looking something like this:
I. Lisa's concerns/issues (10 mins)
II. Additional comments from outside resources (10 mins)
III. School Response to Lisa's concerns/issues
IV. Communication

We will also keep a "parking lot" for issues, questions that come up
that cannot be answered immediately or do not require an IEP team
decision.

So now I'm wondering, are they going to call all my issues a matter for the "parking lot"? Really, I just don't know how to respond to this so I don't plan to. I'm stunned about the 10 minutes she pictures. If I did respond, I think I'd say - - - I will create the agenda tonight and bring it tomorrow. I envisioned this IEP to be the opposite of the last IEP I called, where my time to speak began 5 minutes before the meeting was scheduled to end. Where communication, straight answers and resolution are acheived.

Should I send that?

[peglem]

If I sent an agenda at all (not sure- I'd be tempted to just make one w/ multiple copies to distribute at the beginning of the meeting, so as not to give them time to compile BS to shoot you down with) I would list my concerns individually, w/o time limitations. These are the items you want discussed and/or addressed. Sweet and simple. Make sure you come away with an agenda too, of how each thing will be addressed and who the responsible party(-ies) will be. And I hate to harp on the pencil sharpener thing- because your right- things break. But, if it was broken with malice on Vince's part, you would look so, so cooperative showing Vince that he is responsible for replacing it. But, don't do that if it was really an accident or just the fricken thing wearing out. Adolf may have a different story to tell:mad: But, you might use this incident to state that if they have issues that need follow up at home- like paying for something, you need the school to inform you in writing @ what happened, so you can have the whole picture when you discuss it w/ Vincent. By the way, did I ever tell you that I love his name- its my son's middle name;)

[lisa6wks]

Mili,
Could it be possible that Vince is saying he is tired or hungry because he is trying to get out of doing something? Though of course why they didn't think of that is beyond me.

Lisa

[peglem]

A mid morning "pick me up" snak should help with the hungry part.

But really, you need a functional behavior assessment done by somebody who really understands autism and will be able to see if his behaviors are resulting from frustration over not understanding or more probably over not being understood. Like after school, they thought he was upset because you were late, but he was really upset because he thought they were calling you names! A behavior plan will only be effective if it addresses the issues he's having. Just behavior mod doesn't do that, especially if you want him to get WHY his behavior is good or bad.

On the inclusion stuff, see if you can get the regular ed teacher involved in that. If a plan is made that is not doable for him- it will only be carried out on paper- giving them evidence that they are complying, but doing bupkis for Vince.

[milivica]

Mili,
Could it be possible that Vince is saying he is tired or hungry because he is trying to get out of doing something? Though of course why they didn't think of that is beyond me.

Lisa

ABSOLUTELY it's cause he's trying to get out of doing things. But as far as hunger, he's hungry all the time, directly after eating he's hungry. He's a boy that never stops moving, the kid needs 1000 calories per hour just to stay at 90 pounds. They just want to make me sound bad and themselves sound better. I think it's that type of thing.

Peglem,
Adolf had a different story, but again I could see she was leaving out critical information. I asked her friendly like, "hi 'adolf', say, can you tell me about the pencil sharpener?" As she told it, she never mentioned money at all. Then she concluded her story by saying "so I never expected him to replace it or pay for it" Now, I never said money, she never explained anything about money, so why did she conclude with a statement about money if it weren't said. So, I asked, "what do you mean pay, replace?" and she said "Oh, we never talked about money". So I said, "right, but um, ok I thought you said you never expected money" and she said, "well noooooo, I would neverrrrrr, Vince mentioned money but I would never ever EVER expect him to do that"

So, while I now believe she didn't ask him to pay, it's like she can't communicate with me - and more over can't with Vince and he can't make himself understood to her.

I loved your last post about the FBA and needing to understand more than behaviors. Yes, he needs someone that can understand autism or an interpreter for Christ sakes. I mean, did I need to ask for that? Guess so.

Check this out...about sending snack...Vince eats breakfast right before heading out with me to school, 2-3 bowls of cereal. About 15 minutes after eating that he arrives at school and goes straight to the cabinet and gets a snack to eat (I first found out when observing). Then he gets at least one snack before lunch, then lunch, then at least one snack, sometimes comes to the car eating, then eats as soon as he gets home. Minimally, 3 snacks and a lunch at school after breakfast. All this to maintain his 5'5" 90 pound physique. Since KINDERGARTEN they have asked me to send extra for him to snack on besides the class snack. The boy just eats!

I better start planting wheat and oats and vegetables instead of grass so I can send the boy out to graze by the time he's in high school.

Ok, I have to start planning my agenda...I have to write it cause my printer is not an option at the moment.

I just finished a call from a friend, she said to ask that we reconviene every 2 weeks...not necessarily all the staff, but the necessary staff, just until we get this on track.

[peglem]

So, is he saying he's tired or falling asleep? Cause saying you're tired could mean his fingers are tired of gripping a pencil or he's tired of sitting, tired of looking at Adolf's face, tired of doing the same old thing, sick and tired of this BS, etc. And yes, you need to ask for somebody who understands because they so think they understand him already. They're interpretting him as you would an NT kid, and that in itself ain't so easy all the time, but they don't know they don't understand because they are making sense out of what he says and does- its just not the sense he means them to make....if that makes sense.

[milivica]

They're interpretting him as you would an NT kid, YES, this is a huge problem...and it's like Adolf has no idea of this, and there seems to be no way to get her to grasp this cause she not only doesn't get it, but she doesn't get that she doesn't get it....get it? :)

[milivica]

All my best laid plans, were a disaster.

The RDI Consultant said afterwards, they were being as mean and disrespectful to me as they possibly could. Treating me like I was totally beneath them.

The meeting ended with me bringing up observation. They did admit I have never been disruptive, but, my mere presense is a disruption to the learning environment. If I try and observe under any circumstances, even lunch or recess, they will call the police to arrest me.

I went to the police station, asked if it was true that they would do this, despite state and federal law and the officer said he didn't know everything state and federal law says about this, I said that was understandable. He said that if school asked them to ask me to leave, they would do so, and if I did not leave they would have to arrest me.

I have to find a lawyer now, and would very much appreciate any solid advice to do so, ok actually what I mean to say is, I would appreciate anyone willing to do MY job and find a lawyer for me to call. I'm really beaten at the moment. I see anything I do now, will not benefit my son. He will be out of this school after this year. But I cannot stop. It's not right. I have to help pave the way for future children and their parents, even if I only contribute one stone to that path...but I can see I am not gifted or educated enough to create change alone (like Martin Luther King Jr.), most people aren't. So I need solid help from someone who is poised and ready to make a difference, has the gifts to do so, and needs someone to act as their instrument (like Rosa Parks did).

I use those ppl as examples, cause ordinary people that do extraordinary things in the bettering of this planet for others, not only themselves, are my heros. I couldn't think of any Ghandi or Mandela examples, or Steve Irwin. They would be my heros too. By comparison to them, I'm trying to do such a minute fraction of bettering things it's not even comparable. So please don't think I rank myself with anyone above I mentioned, not even close. I just admire them is all, and try to remember if they could do so much, there has to be a way for me to do this little thing. It's like we have Jim Crow laws for special needs kids. It's there, everyone knows it, it exists, yet the law says something totally different.

I'm confused, numb, done crying for now although I couldn't find my car outside the police dept. from balling so hard.

Before I left the IEP, I said, "thanks a lot for that coffee". What a mark, I really thought they wanted to work together.

So, two tasks now. First still is getting Vince an appropriate education. Since he HAS made any progress what so ever - Due Process will shut me down and side with school. So, I'll have to do school at home, after he gets home from school more diligently than before.

Second is doing something about this observation issue, it was suggested I go to the school board, that is what I'd like to do. What do you all think.

Third, in order to do those two tasks, I need a lawyer.

I'm balling again, gotta go. I love and appreciate you ALL, for being here through this. Even those just reading, and sending prayers, it helps! I know truely in my heart, you all are sustaining me.

[milivica]

Send in writing, speciffically when Mr. and Mrs. ******* can and cannot, observe Vincent and Carmen ******* at school.

At the IEP this morning it was said we have never been disruptive, yet, at no time in the future will I or my husband be permitted to come to observe our children at school, or school would call the police and have us arrested. That our mere presense is disruptive.

I then asked when can we observe that would not be disruptive by our mere presense? Perhaps during one of the many times Vince is being taught 1:1, with no other students present? I was told under NO circumstances can we observe.

Since this completely contradicts the current letter I have from ---Asst Prin---, and ---Prin---, I need a letter to clarify. Does no observation under any circumstances mean:

Lunch?
Recess?
School Parties?
Class Presentations?
School Shows?
Field Trips?
Are we prohibited from volunteering at school?

Please be CLEAR in letting us know the limitations placed on us regarding obseravtion. I can't imagine the fallout and embarrassment to our children, should we come to lunch for instance, and be arrested.

In addition, my husband would like to know, the racial make up of parent volunteers at school, as well as the racial make up and percentage of parents not permitted to observe without threat of arrest.

We believe you are acting against state and federal law, acting to prevent us from being fully participating members of the IEP team, and against our parental and civil rights.

Michael and Lisa *******

[MaryEvelyn]

http://www.disabilitylawyers.com/NewsRoomContent.cfm?name=WI

I am not sure if you are from WI but they are listed by state.

[Lara]

I'm very confused and very sorry you're having so many problems with the school there Mili. Unbelievable. Make sure you keep copies of every single communciation that's ever gone on between yourself and the school. Try to get everything you can in writing and keep copies.
I don't live in your country so don't understand the complexities of it all. What does stick out in my mind every time I read your messages here is that you need some type of impartial advocate. Do you have anyone or know of anyone like that? Are there any advocates who are involved with any autism support groups or something in your area? I just think that it might be helpful under the circumstances. I'm a little lost as to the actual process that these IEP meetings follow but I figure there are time limits which both the school and yourselves as parents need to adhere to.

So, I was looking at Wright's Law and other places again, and wondered about this mediation system... is that something that is feasible? Who is a mediator? Are they lawyers or are they advocates or something else?

Impartial hearing/mediation

Parents may disagree with the program recommendation of the school district. In that event, parents may reject the district's recommendations by notifying the school district in a clear and concise manner of the reasons for the rejection of the IEP recommendation. This notice must be given in writing within 30 days of receipt of the program recommendation.

The IDEA provides for two methods of resolving disputes between parents and school districts. These include:

1. Mediation that may be a viable means to review small disagreements with the IEP, such as the number of sessions for a related service or the size of a special education class.
2. Impartial Hearing which is a due process-based formal proceeding that allows the parents to challenge the district's individual education plan in whole or in part.
http://www.aboutourkids.org/aboutour/articles/specialed.html
Understanding Special Education and the Law
by Susan Luger, M.S., C.S.W. and George Zelma


http://www.directionservice.org/cadre/beyond_med2002.cfm#stage3
C. Stage III: Conflict Strategies
Beyond Mediation: Strategies For Appropriate Early Dispute Resolution In Special Education
Edward Feinberg, Ph.D., Jonathan Beyer, J.D., Philip Moses, M.A., Forward by Judy Schrag, Ed.D.

[froggy]

Pm'd you. But here's a website:
http://www.w-c-a.org/

[froggy]

Another site that has S. Stokes listed- recommended for FBA's in WI.

http://aboutautismlaw.com/autism_sites.html

[Keggy]

you need an education lawyer or advocate... (don't know what its about though)
you could contact SEPTA and ask them if they could refer you one.

[Fe-fe]

Is it possible to pull him out of that school altogether? They're being totally unfair and unreasonable. You've done everything you can to try and resolve the issues and they way they're acting they're basically saying "we don't give a s**t". I know you're not really keen on the idea of homeschooling, but I don't think it's worth keeping him at school if you're going to have a constant battle to get the school to cooperate.

[Keggy]

You go girl!!


yes.. I added this not even knowing what I am urging you on to do....(egads!)

[froggy]

another site:

http://www.cesa7.k12.wi.us/sped/Parents/plainlanguageindex.htm

[lisa6wks]

I am so sorry Mili,
Lisa

[peglem]

The only thing I think you have a good chance of fighting successfully is the observation thing. You did tape that meeting, didn't you? The reason I think you're going to have trouble fighting the other issues is that teachers and administrators and even the hallowed superintendent are VERY good at producing paperwork (evidence) to show that they have done exactly what they were supposed to do. I'll bet they can even make it look like, on paper, that Vince is making wonderful progress because of their efforts. I don't see how they could possibly defend their position on you observing in the classroom...especially after having admitted on tape (you did tape it, right?) that you have not done anything disruptive and you certainly have proof that they told the super that you had been disruptive. (which I know you kept) Before you contact a lawyer though, you might get some satifaction by contacting your state department of education, letting them know that you believe your civil rights have been violated and you'd like to know how to file a grievance against them. They may just refer you to another agency that deals with that sort of thing, but the state needs to know that this is happening. If they blow you off- go to the governor or find out how to report it to the feds. But, you may have to decide how badly you want to fight. These people sound so sinister: in one breath admitting that you've done nothing wrong and in the next, threatening to have you arrested. How far would they go to "get even" with you? Would they trump up stuff to report to CPS? It just seems no matter what you do, they just keep getting worse and worse- not because of what you do, but because they are petty little people who get off on holding all the cards and not letting you play. Maybe, since they aren't really going to try to help Vince anyway, you got nothing to lose....

This whole thing just astounds me...I hate it, really hate it when stuff doen't make sense. There just doesn't seem to be anything in it for them to keep doing this to you. Are there other parents w/ similar problems out there? How do you find them? Its seems like you all could ban together and help each other. I was going to suggest going to the newspaper with this, but they might sue you for defamation or something...

I just feel terrible for you Mili- how do you fight this kind of nonsense? BTW- "In addition, my husband would like to know, the racial make up of parent volunteers at school, as well as the racial make up and percentage of parents not permitted to observe without threat of arrest." NICE TOUCH!!

[peglem]

Here's info on filing a complaint with the Office for Civil Rights.

http://www.ed.gov/about/offices/list/ocr/docs/howto.html?src=rt

For civil rights lawyers in WI- it says you can get a free case review

http://www.civilrightlaw.com/news-articles.cfm

And this one looks promising for free legal advice/help

http://www.w-c-a.org/pages/how_indad.html

[milivica]

Thank you all for the links, I am going to look into every one of them. I have already looked into several of them. Froggy I'll be making calls tomorrow on lots of info you gave me, by gosh it was fantastic!

Yes, I tape recorded the whole meeting...the end of the tape I am saying as suggested by you I believe, "so tell me when I can observe, when it will not be disruptive, like when Vince is getting 1:1 in the room alone" and they again say no observation, if I try they will have me arrested. So I say, "So you're saying no observation period, even if it's not disruptive to other students"(which was their latest arguement) and she said, "I'm, uh, yes". The 'she' that said this was someone above the principal, she had nothing to do with anything, but showed up 'directing' the meeting - everyone would look at her before answering, and she'd shake her head yes or no to allow them to answer or not and she squinted and silently laughed a lot at me only.

Everyone in that room was a sell out, even Adolf who sometimes spoke even when the 'director' was telling her not to. Adolf is most scary cause she believes she's doing the right thing by 'her kids'...kinda like the mama on Pink Floyd the Wall, "mother's gonna keep you right here under her wing, she wont let you fly, but she might let you sing, mama will keep baby cozy and warm." She's creepy like that. She thinks she's doing GOOD, she couldn't be more misguided.

Before leaving the room, I looked at my so called friend, the assoc. Prin. and said, "thanks for the coffee" cause wow, what a dummy I was. Sure, they want to treat me nice and work it all out over coffee. Right. Her eyes were real red like she got no sleep or was crying, not sure. I'm so STUPID STUPID STUPID cause I feel for her. God knows why. I need to quit feeling for folks that are not out for my good or the good of my family. It's STUPID.

As for me, I will get a lawyer one way or another. This is one of the rare times I could count on one hand, that my peace of mind is worth it. I need a lawyer that has a awesome track record in getting FAPE for kids with autism. Hopefully I can achieve this without major debt, but the idea of someone that knows what they're doing going up against school instead of me, well it's the first time the knot in my stomach had any relief.

Anyhow, no need for all major decisions to be made here and now tonight. Just mentioning the only thing, that brings any relief. Envisioning someone in a suit and tie going to school and walking out telling me Vince will from this point forward have FAPE. Ya know?

[milivica]

peglem..oh oh oh!

I will take your advice about filing the complaint...there is even an online form to do so. Check this out:

WHO CAN FILE

Anyone who believes that an educational institution that receives federal financial assistance has discriminated against someone on the basis of race, color, national origin, sex, disability, or age,

and

A complainant is not required by law to use the institutional grievance procedure before filing a complaint with OCR.

So, I don't HAVE TO go through the school complaint process first. And, they for sure are discriminating based on disability, or so they've said in writing, that I cannot observe in the spec ed environment (when that's the only environment he is in) and was told I was only permitted to volunteer and participate in the general education environment despite federal law stating otherwise. (This is what the law says: Parents have a right to access to teachers, opportunities to volunteer and participate in your child's class, and
to observe classroom activities.)

Also, OMG...was it you peglem that told me what 'general curriculum' meant? I think it was, either you or Lisa. Anyhow, check this out...today at the IEP I ask the amount of time he's in general curriculum and Adolf says, "what's general curriculum, what do you mean, can you define that?" so I say "5th grade stuff". Adolf then continues to use "5th grade stuff" as her terminology.

[Pamster]

So they said you CAN'T go into the class and observe??? Isn't that illegal??? :eek: :eek: :eek:

[peglem]

This is the part I thought was nifty on the OCR site- Under Q&A for disability laws:

Do these laws cover just students?

No. The laws protect all participants in the program from discrimination, including parents, students, and employees.

I have no idea what they will do about your particular complaint, but I can tell you that The district that I used to teach in was sued by OCR on a parent complaint over services for non english speaking students- the district was forced to not only to implement a program to meet their needs, but also to provide compensatory services to make up for the time when services were absent. District compliance is carefully monitored by the agency. Did you see the time line? They not only get back to you very quickly, but if they decide to intervene- they work for a 180 day resolution. Now I know, Vince would be out of this school by then, but he won't be out of the district until at least 8th grade, depending on whether or not you have a K-12 district or a K-8 district. The other thing is, they will investigate- like their is no way the school's going to provide data to you about the racial make up of their parent volunteers and those "forbidden." But, if OCR comes in they can really find that info out?

I find it extemely hard to believe that these people don't know terms like general curriculum and evidenced based. These are terms they almost certainly are dealing with, especially those in the SPED field. Does Adolf not know the laws pertaining to SPED?

"The 'she' that said this was someone above the principal, she had nothing to do with anything, but showed up 'directing' the meeting - everyone would look at her before answering, and she'd shake her head yes or no to allow them to answer or not and she squinted and silently laughed a lot at me only."

You should find out who this woman is and what her position of authority is.

[milivica]

I know the woman's name and her position is the Director of Student Services. I just was concerned about saying it flat out. I'm certain they must have known the terms I was using, I really don't know why they'd ask for definitions of common terms in their jobs. Maybe they hoped I'd explain it wrong, thought I didn't know the definitions, hoped to have another tool to put me down? I dunno.

Step by step I begin tomorrow, to follow some of the options and advice I've gotten here. Also, what do you all think....My ma's hubby told her to tell me to not make an appt. but go straight to the State's atty's office with the tape. I said that won't work, cause they don't know special ed law and so on. But, then I thought about it, and said maybe I could go, play just the last 30 seconds of the tape after explaining they refuse to allow me to observe my child in a public school, and explain where they can find this law in NCLB if they don't know (pages 39, 58-59, 80, 194-198).

Dh and I know for sure, Vincent's civil rights are being denied him....realizing how totally isolated he has been, in that room...today finding out he is not permitted to go to recess AGAIN. DUH, I did not notice that on his schedule...I thought lunch included recess. We covered this last year, the year before...WTF!!!! Again, no recess, again again again.

While I try and find a lawyer, I have to put the bulk of my energy into a middle person to go between school and I. I want one that is recommended - that's invaluable - thank you froggy! I will call her tomorrow, I'm so nervous, I hope she's available. It is so urgent...to restore some sense of competence, dignity, pride, to Vince. I feel so rotten, that I was so angry at his school behavior, when it was school that was out of line. No wonder he's such a lunatic in social settings. To be as good as he is while under the constant pain of isolation under his stinkin table, with no opportunities to access peers he can feel competent or successful with. It's gutting. It's inhuman.

Yesterday, he spent exactly four successful MINUTES with Carmen, for the first time in ??????? 'appropriately' fighting over a bead in her hand that she while giggling would not let him have, and he giggling but not hurting her was trying to get for the sheer ENJOYMENT SHARING of it, not actually for the bead. I would say this is a FIRST. Then, for the rest of the night, he was on cloud nine. He voluntarily for the first time, read not only to me, but did a 'rat school' and 'taught' the rats. It was BEAUTIFUL. It was Godsent, I believe from all the prayers here, I really do. I needed to experience seeing that development, so easily accessible just from a few minutes of social success, more than anything.

In the mean time, thank you again and again, I can't say it enough, for all the support. I've been given several solid paths to follow here, and will, and will continue to write this saga and all of it's ups, downs, and outcomes.

[milivica]

So they said you CAN'T go into the class and observe??? Isn't that illegal??? :eek: :eek: :eek:

Yes. It is against federal law (if I am reading/understanding it correctly),

Parents have a right to access to teachers, opportunities
to volunteer and participate in your child's class, and
to observe classroom activities.

I am currently being denied all three.

[Keggy]

They can certainly ask you to define what your terms mean... it is a good idea to do so, so nothing wrong with that. The using the "5th grade stuff" repeatedly afterwards was more than a bit insulting.

I would consider filing a complaint with the Office of Professions against Adolph. You can do it when this mess is over.

Please tell me they knew you were taping them, and that you can prove they knew. Please!!!

[peglem]

I just have a few minutes here, but, I wouldn't go to the attorney general until I had some legal advice from my lawyer. I would, though, go to the state department of education, since they are responsible for oversight of all the schools in the state. I hope you can find a savvy atty.

[milivica]

keg, yes, all on tape.

peglem, I'll do what you said then. Since it's why I asked for advice :D

edited to ask...Peglem you talked about OCR, I don't know what that means, I did a search and got this http://www.ocr.wisc.edu/exec/ , is that what I should contact in addition to DPI?

[milivica]

woops, nevermind...OCR...got it (duh).

Office for Civil Rights.

[Keggy]

no... I mean were they informed that they were being taped.. and if so can you prove it? For example a signed letter or them stating they are aware on tape.
This is very important!!

[milivica]

Although they did not inform me they were taping (hidden on a table in the corner) I informed them in writing, and had the recorder in the middle of the table, and announced the date of the IEP into the recorder at the beggining at that it was an IEP meeting.

So far, I have contacted and await response from OCR, DPI, CESA, WCA...although WCA did call me back (Wi coalition for advocacy) and seemed angry, and said they will have someone call me back next week - the person that called today had only the purpose of seeing if my complaint meritted a call back, it did, so I'm getting one.

I emailed OCR and got a Confirmation, just finished emaling DPI so will get a confirmation soon I'm sure, and first emailed a woman at CESA that was recommended to me but I'm not sure if she's in my area, we'll see. If not, she probably can advise me.

My last thing for the day, cause I have to get the kids from school in just over an hour, will be to contact "Parent Information Center", I dunno what it is, but a lawyer of a friend recommended it. He currently serves as an officer and board member of a Center (not in Wisconsin). He said, "The quality, quantity and availability of assistance may vary greatly from Center to Center but this type of issue is exactly why the empowering federal legislation and funding was created within the IDEA law".

To those reading, please bookmark this should you ever have to go the same route.

Office of Civil Rights
Department of Public Instruction
CESA
(your state) Coalition for Advocacy
Parent Information Center

Th th th th th th that's all for now folks. (I'm back to feeling insane again :( )

[milivica]

Ok, well I just got a certified letter from school.

Amongst other things reitterated, they want me to know that besides calling the cops if I attempt to observe Vincent they will consider pressing charges on me for trespassing as well.

(to PUBLIC property???)

************breathe innnnnnnnnnn*******************
I'm ok.
I'm aaaaaaaaaaaaaalright
************and exhale*********************

[Lara]

You know what I'd do for the moment? I'd stop all of your personal communication temporarily. No back and forth emails or phone calls, until you get an advocate or get legal representation. I wouldn't keep pressing them right now to go in to observe in class. They're obviously not going to cooperate with you at all and it sounds as if it's getting worse. Not that you shouldn't have the right to do that, just that I feel they're becoming more and more vindictive and that's not going to help your son or you at all. Just my feeling.


I don't know what sort of system you all have over there in your schools. The school my two went to had no real system for years, but then security needed to be stepped up because of some things that had happened in other schools. So any visitor to a school now needs to go to main admin. office and sign a book... sign in , sign out. Just curious if you have that there, mili?

Edited to add: They're becoming aggressive and threatening you. ugh. Why on earth would they be doing that? That's what I keep having to remember when reading what's been going on. They obviously have something to hide or they have done something wrong. Any reasonable school or staff member of that school who had your child's interests or your interests as their priority would be bending over backwards to do all they could to help. That's what I am not getting... why are they acting this way?

[milivica]

I spoke to a paralegal today, the lawyer would like to speak with me Monday. My hopes are up so high, that all the truth behind this comes out. I'm finding out much more now, and this reeks of discrimination - honestly, I'm shocked. I've had someone come forward to me, that's all I can say.

Also next week, the Wisconsin Coalition for Advocacy will be calling me back to take information.

Please pray that I have the wisdom and strength to make this work out in Vincent's best interests, and that I can then bring as many parents and their asd kids along to the school life they need and deserve. One with learning, competence, successes and most of all friends.

[peglem]

My family's prayers will be with you. We do a family bible study once a week- you'll be included. I know as the legal process gets underway, you may not be able to tell us much, but please give whatever updates you can. I kinda feel like this is my fight too. I hope people who come foward from the school to help you can stay the course, as job repercussions can get pretty nasty for them. YOU GO GIRL!

[milivica]

I take those prayers very seriously, cause I swear I don't think I'd be as sane as I am in this, without them. Thank you very much.

Yeah, if I actually do find a lawyer to take this on, I'm sure I won't be able to post here...which will kill me cause you guys are my family.

Speaking of which, this is also your fight, you are right. This fight is not just for Vince, it's for all the kids that can benefit from the outcome, should it be positive. I really do mean it, that I feel all parents with kids on the spectrum are my cousins, and their kids are my son's brothers and sisters.

For now, I just hope I can find a lawyer that is skilled at this, who will do this for Vince and us, and bring out the truth.

How cool would it be, if schools actually had to follow the law, and our kids got to reap the benefit of that. That's all I want.

Ok, talk to you soon.
Mili

[milivica]

today's letter, after a disaster (aka me trying to communicate with school)
When I attempt to communicate with you in person, it is because it is a very very simple issue - that while it should have already been handled at school, was not.

I tried to tell you Ms. H. is ignoring Vincent repeatedly and this is upsetting him - before I could tell you what she was ignoring him about, you interrupted and told me Ms. H. was ignoring him under your instruction. That you both sat there, and totally ignored him, on Friday Nov 17, 2006 - that the two of you were sitting at a table ignoring him.

This was not even what I wanted to speak to you about. Yet again, quite by accident as always since you have never communicated anything to me about my son's day, I find out information that should have been shared. I now see why such drastic attempts are being made to keep his father and I from observing. ******, you are devoted to your students, but you are not effective with my son. It is devastating to children, let alone a child with autism to be shunned. You should know that. In addition, do not continue to tell Vince he is not telling the truth, clearly you could see how that upset him. And, when I'm speaking to you, return the courtesy and do not then begin speaking to my son with your back to me. It is not appropriate, we need to communicate, do not speak to me 'through' him.

Answer this:
Where in his IEP is there a BIP to instruct aides to ignore him, and participate in that shunning yourself simutaneously as well?

Also, he ran off crying at school today, which you also made no mention of. He was told that because he ran off he would not be allowed contact with the rats at school tomorrow. What is the reasoning here? To take away the little social contact he has - with rats (bad enough he has so little with peers).

I begged and pleaded and asked again and again, to understand what is going on in his day - on Monday (and only accidentally) you inform me you and the aide shun him together...when I was only trying to tell you it upsets him that she ignores him when he says her hair smells nice. That is not a lude or inappropriate comment, he likes the shampoo, big deal. She should know as you should, the more you ignore Vince as most kids on the spectrum the more they perseverate on it again and again...they do not get the 'hint' to be quiet from being ignored, it makes no sense to them, and upsets them.

I really get it, from the principal again trying to instigate trouble - yelling in my face again, your continued efforts to keep me uninformed about my son at school, that school is doing and will continue to do everything it is able to keep me uninformed, intimidated, and as far away as possible. But like it or not, when Vince finally communicates his day to me, I have to communicate with you - you've made certain I never enjoy the encounter, getting you to listen to what I'm communicating is next to impossible. I do need to tell you, since you are unaware, of what's going on in my son's head. Are you trying to take your negative feelings about me out on Vince? You heard him today, he has been going on and on about not wanting to go to school - what is happening over there?????? When if EVER will I understand how he experiences his school day???? Any hope of working on a current BIP, that actually addresses his core deficits???? Any hope of wanting to give Vince FAPE more than you want to give me hostility????

Really, I'm so upset over the three on one I experienced in the hall today. It was supposed to be an extremely simple statement - Ms. H. is ingoring Vince repeatedly when he says your hair smells nice, and, he is perseverating on it. That should have been it.

It's unfortunate for Vince that you and the principal are not as good at FAPE and cooperating in a welcoming way with parents, as you are at conspiring to conceal his school day, and make a concerned mother look bad.

then, Vince started talking about not getting recess again...so I wrote a second letter

Vincent tells me again, he got no recess. Why isn't he getting recess? He tells me he usually does not get recess. He says cause you are afraid his engine will get to high. That is like saying "I'm so sure you'll fail, let's not try".

It is extrememly important he does not have recess used as a tool to punish. That is commonly known about those with autistic spectrum disorder. It is not unique. There is no one on the school staff or elsewhere, other than yourself, who feels Vince does not need and benefit from outdoor recess. He should be getting as much outdoor recess as his typically developing peers. For further information on the benefits and appropriateness of outdoor recess to Vincent, you may want to speak to ***X ***X Miller or any other staff in your OT room.

Where on his IEP does it state it is appropriate to use recess as a punishement/reward? If it states that (it's difficult understanding the language of IEP's) it needs to be changed. As I have never fully participated in the IEP process, it's very hard to understand the document.

He stated he was in the Paws/Solitary room today, he said "yes, again again, 'Adolf' put her hands on her hips and got mad at me". Why was he sent there, for how long, and how does he interpret this - what does he gain in terms of FAPE from this. Where on his BIP does it state to do this? What does he learn from this? I'm not understanding why he is going to this room, when he never gets time outs at home.

Once again, it becomes more and more clear, school has much to hide - and that is the reason for such overreaction on school's part, about parent observation. Which really is an injustice most of all to Vincent, when I'd be glad to help get his IEP in complaince, and help create FAPE for him.

There is so much inappropriate about his school program, I may have to send several letters explaining all my concerns - it's impossible to express them all when I cannot observe, cannot understand all the verbiage in the IEP, have an outdated FBA/BIP. It is not my goal to be difficult, I wanted to work in the spirit of cooperation with school, but there is no other slot left open to me than unwelcomed and uninformed.

Last, will the IEP ever be in complaince? Without pointing out every place it is not, I would at least like to receive the video tape of him at school.

[Pamster]

Oh Lisa, I am so angry for you and poor Vince! This has got to get resolved sometime soon, this is the Thanksgiving week for crying out loud, couldn't they find it in their hearts to DO the right things for your son? They definitely sound like they have a lot to hide and are denying him things like recess just to be spiteful. It has no other reason in my mind, other then spite.

I am just so sorry for you and Vince that you've had to fight this long to get what you're still not able to get for him now. FAPE. Maybe they need eduaction from a nice ADA Lawyer, that is where I would be turning right now, trying to find a decent lawyer who can work things out. I wish you all the best and have been praying about this, I know with His help things will work out, but it's just such a shame you've got to go through all this helplessly without any communication from the school about your son's day.

I know they put Jackie in a room if he wigs out and acts out but I think it's more about letting him calm down and think about what he'd done to get himself put there. I still don't like it, but then we do use time outs here and they really never help IMO though. I wish I could do more then give you a cyber hug, but you just know a LOT of us here are pulling for you.

(((((((((Lisa))))))))))

[milivica]

I talked to the lady that's going to help me navigate the legal maze.

She was AWESOME! Best of all she has a adult child on the spectrum who is aspie like me, so it's not like I have the usual 1,001 worries that I'll have to explain myself, what I really meant, what I thought she meant, etc etc...

I have to go make copies of everything and send to her - no problem! I'm hoping my son's state case manager is at work today, I can do copies there then.

I really can't wait to see Vince have a program right for him. Feels like I'm a turtle in a race of course, so that's hard. But at least this lady seems to know how to get started, so that's great.

Mili

[milivica]

Sent IEP and all important info today...no procrastination! Sent to two different sources. The one I wrote about above, and an unnamed person ;) .

I let a person at school know (and I hope this person isn't stabbing my back cause she's claiming she believes Vince has a great program - HUH???) that now I am forced to go to outside sources, I fear school will wind up losing funding, and so I still hope they decide to come round. Let her know the outside folks will follow up with DPI, OCR, it will be out of my hands. Should funding be lost, which I really do not want unless it is directly from the salary of those doing wrong on purpose, I will absolutely be sure to get the word out amongst parents, that this was not my doing, totally avoidable, etc...

Most important, Vince is finally on his way to FAPE, I hope and pray. I gotta believe that, ya know?

[peglem]

The school will not lose funding unless they refuse to follow through on corrections that are required from them...in fact they will likely have evidence and documentation to "prove" they are correcting (I mean after a ruling or settlement has been reached) things, whether they actually are doing it or not. They would have to treat OCR and DPI the way they are treating you to lose funding- and even then, they'd probably lose their jobs before the district and state would withhold funding.

[milivica]

OH, well I didn't know that. Ok, better. I really felt conflicted about that, felt I had to go forward, but didn't want kids to pay for adult insanity.

[lisa6wks]

Mili,
was just going to say the same thing, stop being so gosh darned good to that school and it's personnel. They have to take care of themselves, you are Vince's only advocate! You don't want to sacrifice him for the greater good, especially when you are really not doing the school any favors as they need to get their butts in gear or pay the consequences.

Stop being so darned Nice! :)
love,
Lisa

[milivica]

Ohhhh - well I love it that I sound nice, but I'm giving the wrong impression. I'm worried about loss of funding hurting the KIDS at school. The staff that does not do right by the kids I don't have any feeling for, either positive or negative. I think if they are not doing right by the kids they should not be there and would feel nothing if they experienced negative consequences cause of their actions like less money or getting fired. I feared the kids would suffer loss of funding to the school, cause of what staff is doing with Vince/me.

I'm not at all above meanness in thought, I just can't do it in action. Anytime I've purposely tried to hurt someone's feelings in the past, if I do suceed, I feel no satisfaction, just like a jerk.

However, visualizing a few people in administration, who created this nightmare, jobless and dirty and pushing a three wheeled shopping cart down the highway with a sign on them saying "Will FAPE for Food" has crossed my mind. The visualization or staff working properly with kids on the spectrum (not only mine either) and imagining them swing on the playground and make friends and enjoy and learn in school, that give me satisfaction like I want to feel.

'Adolf' just flat out doesn't get it, and fights hard and nasty to prove pointless points. She's autistically illiterate, but might be good at actually teaching, I'm not sure. I don't feel about her like I do about the admin that are creating this mess in my son's life, mine too, which effects dh and my daughter who gets little enough of my time. Adolf is a tool of admin's as I see it. It's a different kind of anger at someone, no matter how bad they are botching things up, when they just don't seem to know better. Like a person that is a 'collector', has 100 cats in a house full of fecal matter half starved, moldy food everywhere and actually believes "I'm helping them, they'd all be dead without me, I feed them enough look at all the leftover food". I feel one way about a person like that. I feel another way about a person that runs a puppy mill in the most deplorable conditions, knows how the dogs suffer and cares nothing for them, but it's a business to them. Adolf is a 'collector', a few of admin are 'puppy millers', the principal, director of student services and superintendant for sure. That analogy is how I've processed it I guess you could say.

I want the 'collector' to be helped so see how screwed up their way is, I want the 'puppy millers' to be never allowed near an animal again. But the cats and pups involved (the kids in this analogy), well none of them should have to suffer further consequenses, and cats and pups in the future should benefit from what ever happens with the collectors and puppy millers.

I hope that doesn't make me sound totally strange, I think everything to me is understood by one type of analogy or another.

[tgrimes]

Yeah, that's a good analogy, because the 'millers' only do the minimum required by law (the way they interpret it) and won't change until faced with legal consequence, but the 'collectors' you may have to convince of their own injustices. Which could be harder, actually, since they justify everything with irrational logic. So there may be no hope for Adolf.
Do you have an analogy for yourself if you are able to get change? Like to hear it!
Been following this but not much to say, I always felt helpless when it came to conflict with the school, even though I had plenty of occasions to fight the system, so I am impressed whenever someone spends the time to focus on getting the schools to do what they are supposed to.

[milivica]

This focus you see me having with school, is more like perseveration or obcession for me at this point. I'm in over my head, don't have the brains or experience to do this, so am pretty much seeking guidance and help. I think the more they pushed me away with such drastic stuff (arrest, trespassing) the more I was convinced I needed to be involved.

I guess in that analogy, I'd be the person trying to take on all the 'collectors' displaced critters. I'd have rational logic unlike the 'collector', but simular to a 'collector' my good intentions or desire to see the critters happy and whole would cause me to get in over my head without enough knowledge or expertise to handle what I've taken on. Also unlike a 'collector', if you show me a different way, I believe I could rationally judge if it were beneficial to the critters over 'my' way, and if so, I believe I'd very willingly change and be thankful for the info.

So, if Adolf could actually explain her reasoning, show me why taking away his recess etc... is beneficial to him, I'd be happy to listen and consider it. But she has no reasoning, she's kind of a one size fits all person. Behavior is not commincation to her, it's either good or bad, reward worthy or punishable. And she misinterprets some neurology as 'behavioral' such as his lack of attending. I'm sure she feels she modifies tremendously for Vince, but like someone said really well here, she uses nt logic for my asd kid. Her methods might be fantastic for some kids, but not mine, and not other kids on the spectrum whose parents I've now spoken to...one of whom might come to my next IEP!!!

[milivica]

Sending all pertinent info OCR requested to them tonight via fax. Dh and I spoke with what seemed like a good guy from there, that called today.

Still waiting for Cesa lady to call back, regarding all the info I sent her last week.

Still waiting for DPI to contact me back.

Furious to find out, that not only are they still not giving Vince his TWO recesses like the other kids, but, he said this to me today about the recess he does get:

Ms. H. was mad at me at recess. "She wouldn't play with me, she stayed inside" so I said well, it might be ok for her to do that while you play with kids or watch dust devils, wouldn't it? and he said "No, because I'm out there all alone by myself. No other kids, just only me, like a martian all alone. She keeps telling me "you're wasting your time" only and won't talk to me."

That sliced me..."like a martian" :mad: :( great. As if asd's don't feel enough like that. I had no idea, the 'recess plan' was to throw him outside completely alone, with no other kids present. I was so upset, I figured the main thing is that he does not continue in this isolation when he continually expresses he does not want to be, "why they don't let me be with other kids, I want to be like the other 5th graders, I am a 5th grader" :( .

See, this is a perfect example of things I don't think to ask, and he doesn't think to tell...isolated recess...why would it even dawn on me to ask or request that other kids be present on the playground - I mean do I have to also specify WHICH playground "the one at his school which HE is on simultaneously" and do I have to specify how close the kids should be to him so they don't stick him behind the dumpster on the playground. God this is awful. To think, I was ready to go to bat for school cause of his name calling and behavior - HIS, ha! I ought to give him an award for only calling them morons.

So, despite questioning how effective or wise it might be, on impulse I called school, spoke to the assoc prin - the one who took me out to coffee and pretends to care (I cannot tell anymore if she is friend or foe to Vince, I have no clue). I let her know I would be there tomorrow for his recess. She asked 100 different ways what my purpose was, I said, "well NOT to observe, that's for sure, cause then I know I'll get arrested and school will press charges". She said she don't want to do that, and so on...but I kept thinking well no one's making you push 911 so why would I believe you don't want to? She said the principal would have to accompany me, I said that was fine but tell her to stay out of my face. She asked what I meant, I said I don't want to smell what she ate 3 days ago or have her boobs bouncing off mine or have her yelling and spitting on my face or glasses.

Anyhow, it took a while for me to figure out how to express in words, why I was coming to see him at recess. Finally I said, "I'm calling cause I don't want trouble. My goal is not to 'catch' school not giving him recess, I already know that. My goal is not to catch school not following the schedule they claim to do that they send home, cause I already know they don't and it really makes the schedule useless if it's not being followed, still leaving me in the dark, about what he does at school all day. Me calling gives school a chance to at least stage recess as it should be, which means Vince might finally get recess" - ahhhhhhhhhh I'm not saying what I really mean. I did on the phone. Maybe I can explain later. I don't have the words. I'm unable to make the words = the pic in my head. I don't care who 'wins' other than Vince winning. If I have to come every day and peek out the door to 'see' he is actually getting recess, so be it.

So, she asked if she should check to see if he will even get any recess tomorrow. I said I wanted to see with my own eyes, but, if she said he was NOT getting recess, then I suppose I wouldn't come, cause there'd be nothing to visit for then, just more documentation that his IEP is out of compliance, which only seems to matter to his dad and I anyhow.

There are too many variables the school uses that I will never - nor would any other person, think to ask about. It's like trying to make sure you cover all the potential factors in Pi, it's not achievable. Like what would ever compel me to think to ask "are there any other human life forms out there when he's at recess, or do you toss him out there without even his aide to speak to". WTF.

And ya know what his schedule said for recess yesterday??? Mostly talked didn't play. Never mentioned he was out there completely alone - the best he could hope for at an isolated recess is stimming. WTF.

I got more to say, but I'm just going round and round here. Got homework to do, then Kinkos for mucho faxing of docs to OCR.

Mili

[lisa6wks]

Just a really quick question... was he out there all by himself with no adults in attendance either??
Lisa

[milivica]

No adults in attendance with him outside BUT the aide was watching from inside the school. I can only guess it was the whole time, Vince can't tell me. I can also only guess it was from the door Vince would have walked out of since there's a big window in it.

[peglem]

So, he's basically in solitary confinement, and recess is his time in the yard. I wish I had some great advice...this is just so outside the realm of what anybody could possibly expect. Y'know, they're not even treating him like and NT. They're treating him like a juvenile delinquent. Can you go and be civil to the principal? I mean, if she's itching to call the cops, any hint of hostility on your part.... I mean, its understandable, but your phone call sounded hostile-restrained hostility, but definitely hostile. (I'm definitely not judging you, they're hurting your kid and that's bound to make you angry.) You don't want them to be able to say, "See! We were right about her all along!" If you get some State or Federal intervention here- I hope you can get them to do some extensive observation, because it sounds like they(the school) have documentation that they're doing what they're supposed to do and counting on nobody believing Vince. Maybe you should call another IEP meeting to discuss recess. It just gets more and more unbelieveable.

[milivica]

I could be civil or what ever I need to be to the principal for my son's sake, no problemo. The problem is no matter what I say to her, she intentionally twists it all funny later. It's like, and I'm not kidding, she can kind of mind read or guess your worst fears and make them happen. Must be some major body language abilities she has or something. And I'm certain I no longer could hide my hostility toward her. She and the rest of admim + Adolf are this inpenetrable wall of words and phrases executed with precision to cut me down, probably like they've done so many times before with other parents. I get no where. So Vince gets no where.

I will just add this to the list of stuff to fax back to OCR, which, I didn't tonight cause things got too busy around here. Vince and I took an unexpected extra HOUR for him to read - it was so cool it was unreal. He accidentally made a strange voice reading, he must have needed to clear his throat. So, I laughed and raised my eyebrows real high and said "how did you do that? you sounded just like the bear scout!" Since he feels competence and pleased with himself when he makes me laugh, he went on to read the entire book as the Bear Scout, and the Dad Scout. It was so awesome...he started by complaining about reading (as usual) but wound up choosing to read the book over. I totally couldn't believe how into the reading he was cause the deal was, he got to tell me to 'wait' for me to burst out laughing each page, and this is something he really enjoyed both cause he felt so successful cracking me up and plus he got to boss me around saying 'you have to wait' as I pretended ;) to barely be able to contain my laughter.

Ok...talk more tomorrow. I couldn't agree more when you said "It just gets more and more unbelieveable."

[Isabelle]

Not relevant

[milivica]

Finally, Vince got his recess.

I visited for just a couple minutes of the first one, I wanted to SEE that he got to go outside and SEE that it was with other children. Honestly, albeit way over a foot taller than the much younger kids he was with...the boys were really trying to engage him (when I got there he was still eating the last of his lunch - they gave me the wrong time so I was 5 min early). I sort of accidentally on purpose said something about the rats and hamsters to Vince, whiiiiich, caused the other boys to ask about it and they thought Vince was cool for having 6 rats and 4 hamsters. :D

They had his aide glued to his side, I agree in this instance, he absolutely cannot discuss 'puberties' or anatomy with these little guys. Not cool. So I'm glad that's being closely monitored to begin with.

Then they went out - other than the foot and a half height differential, Vince really looked just like the other kids. That is, he didn't stick out in actions. He threw this big ball, they all chased it - I saw him gently toss it to another kid, might have been a girl, hard to tell from where I was. He did seem to me, to be a part of the play, man it was great. I really need to let his RDI consultant know - see, I have no idea what ideas to come up with to shape this. You just can't toss him out there and say 'absorb nt-ism', but to be honest if at this point he could be successful socially with first graders, I would be absolutely thrilled. Surprisingly, although questioned kinda crabby like (by the person I told I was coming yesterday) I did not receive the usual Nazi SS type escort through the halls, and was not stood next to and watched, watching Vince play. I had a tape recorder ready in my purse to pull out and turn on should the prin. get nasty like she does when ever she catches me alone. I figured that'd keep her civil.

So, since it turns out they currently have no second recess scheduled, like all the other kids get, I picked him up. We had 20 minutes. I drove 2 blocks from school to a park where at the bottom of the hill all the water (it's raining and darn cold too) pools in the curb. Vince constructed a series of levy's out of dead leaves and I rescued worms until my fingers were numb. So, we had some nice parallel play. He was able to share what he was doing with me, I'd have way preferred he was playing with other kids though. But, given the choice of no recess or parallel play with mom, I'll do the second. It's supposed to snow he tells me, that same place has a good hill, if it snows I'll take him sledding every day for 20 min. Unfortunately, that he will have to do on his own, this bod does not react to bumps and falls like it used to - ugh.

So, nice victory for Vince today :D . Oh, and he wanted to race me back to school, me in the car and him running...when he beat me (ok, so maybe I could have went a little faster) he was all bragging and pumped up, it was cool. He should be nice and revived for the last part of school.

Mili :)

[peglem]

I sort of accidentally on purpose said something about the rats and hamsters to Vince, whiiiiich, caused the other boys to ask about it and they thought Vince was cool for having 6 rats and 4 hamsters.

Nice touch!

So glad you weren't harrassed today and that Vince got his recess. Has this 1st recess always been with kids, or was this for you? Will they continue? I'm thinking a savvy assistant by his side would be one who would intitiate games with other children and arrange opportunities for social interraction. Games with rules and turn taking, leading /following that sort of thing. Yes, ideas from the RDI coach would be good- but only as good as the school's willingness to implement them. Also, in middle school-(just thinking ahead) there will be no younger kids for him to socialize with...so you'll have to think about how you'll want the socialization implemented next year.

[milivica]

Really? Nice touch? Cool!

The middle school is on the same grounds as elementary, if need be he could still have recess with younger kids - but that's next year, I can't even sort out next week at the moment. But yes, something to think about for sure.

And yup, a savvy assistant would do all that. His stands there and does nothing. Why start a new tradition after 4 years *sigh*. I have nothing against her, she just has no idea about how an autistic mind thinks. Totally doesn't get it, and I'm starting to realize I don't really know the woman at all. She is excellent at following directions from Adolf though. *sigh* again.

Now, about recess...from where the playground is, I can park and see if Vince is outside or not sort of well - but - with the bright orange hunting hat I got him, he should be a breeze to see. I won't have to sign in, etc etc. So, we shall see weather or not he is with other kids. I will continue to pick him up for recess #2 until school has a plan. Round trip the school is a mile from my home, so that definitely helps.

Mili

[peglem]

Definately, nice touch- automatic respect and envy of other kids.

Just out of curiosity- Does Vince's school have "special area" classes? (art, PE, Music, Band) And are there any provisions for including him in these? I'm just thinking that most of the schools here only have a lunchtime recess for anyone over about a 2nd grade level. (I think this is wrong, but they don't care:rolleyes: ) But, the class has a period of time each day where they go to another teacher who specializes in one of these areas and its usually a good time for inclusion, because, among other things, there's not a lot of pressure for academic achievement.

[Braindrain]

Mili, I've been following this thread and hoping things would get better for
Vince, but it doesn't look that way.:(

Since he'll be starting middle school next year, will he have the same
assistant, or will there be a different one? It sounds like the one he
has now isn't doing the job. (I'm trying to be nice, here!:rolleyes: )

What about his schoolwork? Has there been any talk about how to
get him caught up so that he's not doing work below his grade level?
Will he be in all spec. ed. classes, or some regular classes? About the
spec. ed. classes: do you know if the teacher(s) has/have training in
autism?

I just feel really bad for Vince that he's being excluded from everything
in school. And, what really upsets me is that the school is getting away
with it because nobody there seems to care about Vince.

[milivica]

Definately, nice touch- automatic respect and envy of other kids.

Just out of curiosity- Does Vince's school have "special area" classes? (art, PE, Music, Band) And are there any provisions for including him in these? I'm just thinking that most of the schools here only have a lunchtime recess for anyone over about a 2nd grade level. (I think this is wrong, but they don't care:rolleyes: ) But, the class has a period of time each day where they go to another teacher who specializes in one of these areas and its usually a good time for inclusion, because, among other things, there's not a lot of pressure for academic achievement.

Vince has PE, Art, and Music that I am told he takes with his general ed class. I wonder if I should ask if that means he is in the same room at the same time as the class, or what. I know in Art (that was one thing I observed before getting banned) he basically does not much while the aide cuts and glues and so on for him, which, he is able to do for himself. The aide I believe, is only following instruction, and if she were told to do different she would. The aide really has no grasp of what autism is, despite being his aide for 4 years. He has 3 aides throughout the day. One I automatically like, cause she has an adult child on the spectrum - I know from seeing her at a Special Olympics bowling tournament. PE I was told last year, he could do himself - this year he will first now begin PE cause he had swimming instead, but, couldn't do it with his regular ed class - never did know he was not with his reg ed class till I specifically asked one week before it ended (last week). Music, I know he will have, but does not currently have. When they sing, it's cool cause he can do that and there's so much predictability. Last year, he was to play the recorder flute thingy, he hated it, couldn't do it, I found out right before the 'concert' and during the whole thing he just stood there like a pole. I actually thought it was cool he didn't feel the need to 'fake' playing it to save face.

Hi Braindrain...ok, you asked:

>>>>Since he'll be starting middle school next year, will he have the same
assistant, or will there be a different one?
I am assuming a different one, she will be untrained just as this one is I'm assuming. I am not aware of any aides trained in 'autism', although I automatically feel the one aide with an adult child with autism has enough qualification ;)

>>>>>What about his schoolwork? Has there been any talk about how to
get him caught up so that he's not doing work below his grade level?
I wouldn't even know how to go about bringing that up - I'm sure they will tell me they are not required to catch him up, only show that he makes progress. Considering he was barely able to speak when he began school in early childhood, and now in 5th can speak, I'm guessing technically that would legally be considered progress. It's just stacked so in favor of the school, not the child - but then again what else is new, it's always that way isn't it?

>>>>>Will he be in all spec. ed. classes, or some regular classes? About the
spec. ed. classes: do you know if the teacher(s) has/have training in
autism?

Based on where he is now, I am going to assume unless I find an awesome lawyer, he will be 95% in special ed classes, with an untrained aide again, and a teacher that is not educated at all in autism. Although I really like his general ed teacher he has now, he doesn't know anything about autism - but admits that, so I don't have a problem with it. I mean, I do believe if his job required it, he would do so. And, from day one I think he was going out of his way to reassure me he would never put up with kids picking on Vince, so that I liked.

>>>>>I just feel really bad for Vince that he's being excluded from everything
in school.
It is making me physically ill, I'm trying to detach from most of this, I don't think I could fight this long if I were not detached. It's hard to explain, it's like what I suppose hookers do, or torture victims, you go somewhere else in a way. Vince on the other hand, experiences all of this directly.

>>>>>And, what really upsets me is that the school is getting away
with it because nobody there seems to care about Vince.

I said this elsewhere, but I'm going to say it again anyhow....
I was saying on the phone tonight, "Remember Jim Crow laws? There were federal laws saying we all were equal, but they still had colored this and whites that and the sit on the back of the bus deal, segregated schools - DESPITE FEDERAL LAW, AND THE WHOLE NATION KNEW IT!!! It took military intervention ordered by the president for pete sakes, to get federal law obeyed. Do you see my comparison? We have IDEA and Section 504 LRE, it's all words. My one ply Scotts toilet paper is worth more than my sons 'legal document', his IEP. I am ready willing and able to pull a Rosa Parks, go to school to observe, then go to jail - however, I just need someone who is the Martin Luther King Jr. of rights for the disabled, to guide me to do all the right things to HELP. I have aspergers, my son has autism, my son is black - you would think I'd have agencies lining up to help. Not so, just like in Jim Crow days. There is the school system, and the 'special ed' school system, and they are NOT equal, parent in the nation with a child in special ed knows it, all school staff in the nation know it, DESPITE FEDERAL LAW, and that's just the way it is...until a group of folks that rarely come along, get together and change it. I think the last time that happened was in 1975 when the IDEA act came to be.

Can ANYONE tell me, how this is any different - the special ed system I mean, than Jim Crow?

So, I have no problem with sacrifice for a just cause, which this is. I just need proper direction and leadership and guidance, which, unfortunately I am not good at, I am not a natural at. It is not my strength. Persevering and perseverating is however!

[milivica]

Check out this:
http://www.dredf.org/advocacy/comparison.html

That I found on this site:
http://www.dredf.org/idea/idea.shtml

That I will contact tomorrow cause it says:
We represent clients in state and federal court, serve as co-counsel, and file amicus curiae briefs in appellate courts and the U.S. Supreme Court in high impact and law reform disability rights cases.

And do not eeeeven ask me what a amicus curiae brief is, but I know Vince needs it!

My ONLY question now, is this for California residents only????? I was not able to figure that out.

Mili

[Braindrain]

Mili:

I Googled amicus curiae briefs and found this-I hope it helps:

Amicus Curiae

Definition: Latin term meaning "friend of the court". The name for a brief filed with the court by someone who is not a party to the case.

"... a phrase that literally means "friend of the court" -- someone who is not a party to the litigation, but who believes that the court's decision may affect its interest." William H. Rehnquist, The Supreme Court, page 89.

Amicus Curiae briefs are filed in many Supreme Court matters, both at the Petition for Writ of Certiorari stage, and when the Court is deciding a case on its merits. Some studies have shown a positive correlation between number of amicus briefs filed in support of granting certiorari, and the Court's decision to grant certiorari. Some friend of the court briefs provide valuable information about legal arguments, or how a case might affect people other than the parties to the case. Some organizations file friend of the court briefs in an attempt to "lobby" the Supreme Court, obtain media attention, or impress members.

"An amicus curiae brief that brings to the attention of the Court relevant matter not already brought to its attention by the parties may be of considerable help to the Court. An amicus curiae brief that does not serve this purpose burdens the Court, and its filing is not favored." Rule 37(1), Rules of the Supreme Court of the U.S.

"FRAP 29. BRIEF OF AN AMICUS CURIAE A brief of an amicus curiae may be filed only if accompanied by written consent of all parties, or by leave of court granted on motion or at the request of the court, except that consent or leave shall not be required when the brief is presented by the United States or an officer or agency thereof, or by a State, Territory or Commonwealth. The brief may be conditionally filed with the motion for leave. A motion for leave shall identify the interest of the applicant and shall state the reasons why a brief of an amicus curiae is desirable. Save as all parties otherwise consent, any amicus curiae shall file its brief within the time allowed the party whose position as to affirmance or reversal the amicus brief will support unless the court for cause shown shall grant leave for a later filing, in which event it shall specify within what period an opposing party may answer. A motion of an amicus curiae to participate in the oral argument will be granted only for extraordinary reasons." Rule 29. Federal Rules of Appellate Procedure.

[peglem]

I gave you a lot of websites earlier (overwhelming, really) but wondered if you'd looked into this one:

http://www.w-c-a.org/pages/how_indad.html

[frogmama]

Mili - I know Matthew (almost 12!!!!!) plays MUCH better with younger kids (6-9 age range) and I have it in his IEP now that he attends recess and gym with the 3rd graders Even though he started at the middle school this year, the elem school is right next door so he and his aide just walk over for recess. Socially and cognitively he is NOT a middleschooler and it took me 4 weeks to get the school to see that interacting socially with the younger kids would benefit him much more than just extra instructional time - some things you can't teach, kids just have to DO them until it clicks in their head.

[milivica]

I gave you a lot of websites earlier (overwhelming, really) but wondered if you'd looked into this one:

http://www.w-c-a.org/pages/how_indad.html

Hey, why didn't I contact them? I wonder if I did nor not?

I checked the stuff I sent out...looks like I sent a bunch of stuff on 11/16 and 11/20, but not there. Thank you for asking again. I have to do that, but not tonight - omg omg, I pulled an all nighter last night, then busy all tonight with boy scouts, etc etc. I feel like someone else right now, too old to rock and roll all night so to speak.

There was another link you (I think it was you) gave that I want to be more familiar with, it was great, I believe it was from Indiana, it was blue with white letters (I think) and it was basically a woman saying tips on stuff like...even if you spend wads of money on a lawyer, school will at worst only have to finally comply, it's not like they really get punished or fined. And said something about if you go to due process, retract or withdrawl all your complaints before the verdict so if they rule against you you can still have a hearing over it - ugh - something tricky like that. If I can find it on the thread I'll repost it. I was great advice if you're not looking for the school to pay for what they done, just justice for your kid. I'm starting to want both I have to say, but justice and FAPE for Vince and being able to spread that to other kids is way way #1 before any vengence.

Ok, I feel a wee bit tipsy. Talk more tomorrow! If I can make myself get off this thing.

[peglem]

I was great advice if you're not looking for the school to pay for what they done, just justice for your kid. I'm starting to want both I have to say, but justice and FAPE for Vince and being able to spread that to other kids is way way #1 before any vengence.

You may be sort of able to get both. If OCR finds that they failed to deliver services in the past, they could negotiate for compensatory services to make up for past deficiencies.

Here's the site for the indiana SN lawyer- loved this site & read all of it. Good practical advise about how it really works or doesn't:

http://www.dphilpotlaw.com/html/state-law.html

I'm feeling pretty exhausted tonight, too.

[milivica]

YES, that was the site peglem.

Frogmama and Braindrain...I'm so sorry I didn't reply. I was already in bed, remembered I forgot to reply to Frogmama, noticed a previous post from Braindrain at that time....anyhow sorry! I don't want to ever ignore someone's post that's trying to help me.

I think I just used way more words than I needed to, to explain that.

See ya's tomorrow!
Mili

[gynwhyver]

Milli:

I'm going through a sorta similar situation with my district, only they haven't threatened to arrest me yet!

I wanted to share with you a few more resources you might want to try:

Your State Mental Health Association. My state is currently running a survey about restraint in the classroom because they think restraint is being used in the classroom more often than the Dept. of Ed realizes (my daughter was restrained on 10/13/06 by 2 adult female classroom aides, who had gripped her by her upper arms so hard they left red marks and fingerprint marks. I just so happened to be in the building that day meeting with the new behavior consultant who was going to be working with us on the FBA. She had NEVER been restrained for any reason in the 2 years she's attended this school, not even when she kept running out of her classroom and around the hallways of a school that's under construction, or how about when she was walking all over the top of a piano and they refused to pick her up off of there, and instead the psychologist, principal, aide, and speech therapist watched her walk around to see if she'd fall off. She's 7 yrs old and weighs around 50 pounds, yet it took 2 adults to pin her to a chair, instead of taking her down the hall to the room where we were meeting, or removing her from the classroom, as they've done every other time she's needed to deescalate? Dimwits.). But anyway, this agency has tons of information and can refer you to people that can help if they themselves cannot. But I found them very helpful.

This lady also recommended I contact the director of the Dept. of Public Welfare Autism Division, if your state has one. The lady I spoke to has a teenage son with autism and is a clinical social worker. She then gave me the name of the Director of Sp Education for the Dept of Ed (the head honcho) and contact information. I've shot this lady an email, hoping to correct the problem. I've also filed complaints with the Office for Civil Rights and am preparing to file complaints with the Dept of Ed's bureau of compliance. But when I sent the email to the Dir. of Sp. Ed for the Dept of Ed., I also made sure I carbon copied to the email addresses of all the people at the district who has been making my life miserable, so they know they're in trouble. Federal law now requires that when/if you file complaints with the Dept of Ed, you must provide a copy to the district anway, so I'm not sharing with them anything more than I'd have to anyway.

AutismLink.org also provides information and referral services, as well as free trainings. Last month I went to a free training on creating a positive behavior plan in the classroom setting that was chaired by a behavioral consultant. It was the best *free* two hours I've spent in my life. I learned so much, such as every behavior serves a function (form of communication), that you have to have clear rules, expectations, and rewards, that you need to avoid rules that say "don't do this (ie. run in the halls because then they'll hop, skip, jump, fly, crawl, walk backwards, etc in an attempt to figure out what they can do). Keep it simple, concise, and to the point. Walk in the hall. Speak quietly. She said you have to assume the child does not know how to behave in an environment, and it is the teacher's responsibilty to teach the child how to behave appropriately. So if the teacher wants the child to walk into the classroom in the morning, sit in their seat, and take out their spelling book, the teacher should model this behavior and practice it daily until the child catches on. I could go on and on, but really, so much of it was common sense, and yet many things are made more complicated than they need to be.

You've already found Wrightslaw, which is an excellent site.

If you contact the office for dispute resolution in your state, you can actually request a facilitated IEP. This means that someone outside the district comes in and helps the two of you work together for the best interests of the child. This might be something worth looking into. Here's a link from ts********:
http://www.ta********.org/publications/FacilitatedIEP.pdf.

This is an adobe file, so you'll need that to open the document. Otherwise, do a google search on wrightslaw and you can find info there.

A few more things that I noticed: according to federal law, a regular education teacher must be included in the IEP team if a child spends any portion of time in the reg ed. or may spend time in the gen ed environment: http://64.233.161.104/search?q=cache:Q86BqJ3_YoYJ:www.ed.gov/policy/speced/guid/idea/tb-iep-meetings.pdf+iep+team&hl=en&gl=us&ct=clnk&cd=2.

I also urge you to contact the American Civil Liberties Union (ACLU): http://www.aclu-wi.org/. The main website is http://www.aclu.org/.

Another agency you could try is your Office of Mental Health/Mental Retardation. Sometimes they have access to parent advocates that can help, but oftentimes it's just a relief to have someone to talk to. And the more people you can make aware of your situation, the better. Many times they have a director of special programs or director of autism programs that knows alot of the ins and outs of things.

So far, I've spoken to somewhere close to 20 different agencies, including OCR, Office for Dispute Resolution, Dept of Ed, MHMR, advocacy agencies, law centers, etc. And each agency has given me someone new to talk to.

I know how exhausting, overwhelming, and time consuming this can be. I'm living this right along with you, only under slightly different circumstances and I so want a vacation!!

You are doing an awesome job advocating for Vincent. Keep fighting the good fight! :D

Take care,

Gwyn

[gynwhyver]

Forgot to mention, when you do speak to these agencies, write down who you spoke to and when and also let the district know you've spoken to agencies outside the district. You can easily do this by asking if it's ok with the agency if you add them to your contact list, so that when you send out stuff to the district, you are also creating a paper trail with other agencies outside the district. You simply put CC on the bottom of your letters/emails, with the name and agency you've spoken with and provide them with a hard copy. This way it it goes to due process, you can call in your expert witnesses. You can do this all by email, but it's better if you either send in the letters by certified mail (that way they can't say they never got it), or you can do like I did and hand deliver copies of whatever to the district and make someone sign and date a receipt for whatever it is you're presenting to the district. My situation has gotten so ugly the district tried stating by certified letter that I was no longer communicating with them, simply because I communicated to them through email and they didn't like what I had to say to them. I carbon copied others the same email at the same time (your email program should have a CC button on it) and everyone else received my email, except for the dir of sp. ed for the district, who happened to be the one sending the certified mail. Weird. I suggested to her personal assistant that she may want to check her boss's computers for viruses since no one else had any trouble getting my email. :cool:

Anyway, best of luck!

Take care,

Gwyn

[milivica]

Wow...I shouldn't have waited till so late to look at my email!

I'm going to have to more thoroughly look at all the links (I did read all your info but only hit some links) they look great.

Currently a man from Office of Civil Rights is giving all the info to their attorney, I don't know what that means, I hope it means they will take this case.

I have a call back and another intake with an agency here in Wisconsin, Coalition for Advocacy I believe the title was - it was very hard to hear the message on the phone.

I need still to contact the person from Department of Public Instruction who was supposed to contact me Monday, and did not. So, that's got me concerned. I wanted her to come this Tuesday to yet another, IEP. I'm starting to feel like a rabbit with holes in it getting hacked at by vultures. I had another nightmare yesterday...the school staff that are being so nasty about this, operated on my mouth. It was in the IEP room. They cut out my teeth and GUMS and made my tongue like a ball in the way back of my throat, so I couldn't hardly make noise let alone talk, it was all I could do to breathe each breathe.

Well, aside from what I wrote above there are other things in the works, but those are the three most solid things so far. Especially the Office of Civil Rights. There are still suggestions I need to do that were given here, including some of yours. I just haven't gotten to them, I seem to be in this mode where I stay awake for too long, then can hardly stay awake for days. Maybe it's depression. But if it is it'll have to wait!

I got four really upsetting emails from school today, plus some stuff in my son's backpack. I won't even open the stuff in the backpack - they wrote that it was about what the role of the RDI consultant would be IF ANY. So, I can't even read that stuff, on top of the other 4 emailed letters, cause then I spend 48 hours straight all weekend upset, perseverating, and writing responses that really will make no difference. I hate how on paper, they make everything sound so different that what it is. Anyhow, rather than continually trying to reinvent the wheel, I'm trying to find people who can totally side with Vince, operate under what is best for him.

Thank you for taking so much time to write so much to me for Vince. I DO think making sure there are CC's sent to certain agencies for the school to see, is a super idea. Then, they know everything on behalf of Vince is not just 'me' but agencies that can actually do something about it.

[gynwhyver]

Milli:

Question about the RDI, since this is not something I'm familiar with. Is this something the school pays for or the medical insurance pays for? Has the school agreed to RDI in the school or is this something done outside of it, or both?

Another thing is, they cannot bar you from bringing in experts (ie people who have worked with Vincent) from participating in the IEP. If your RDI person can participate in conference calls or appear in person, so much the better. But any report that is written by an outside agency must be considered when making determinations regarding anything in the IEP. You can legally bring in anyone you want to to an IEP meeting, including an attorney. The district is also responsible for providing you with a parent advocate if you want one. So let's say for instance you see a specialist outside the district who diagnoses your son with autism. The district (as in my case) brings in their expert to say he's not (which they've tried to do). The district would have to take you to court to prove their diagnosis is more correct than the one you obtained from an outside agency. So, if you have someone who knows Vince, and can make recommendations (and puts those recommendations in writing - can you get a letter from them b4 your meeting?) then the district has to prove why those recommendations are not appropriate.

I wish I lived closer, or I'd go to the meeting with you.

I hear you about depression. This insomnia is making me crazy.

Take care,

Gwyn

P.S. Thanks for putting up the link for the Disability Rights and Education Fund. This is a national program out of Washington D.C. that helps advocate for disability rights. From what the web site says is that they can't take every case, and their primary focus is more along the lines of class action lawsuits or those that furthers existing laws. I wrote to them and gave them an overview of what we've gone through with a spin that if they talk to any organization that supports individuals on the spectrum, they will find a wide array of districts either unable or unwilling to provide educational services. So maybe if you contact them as well about your situation and how you are being treated in addition to my letter, maybe we can get a movement going (ie class action lawsuit) that is nation wide and will make schools stand up and take notice, and fix the situation.

[gynwhyver]

Oh, when OCR stated they were handing the complaint to an attorney, it means that an actual lawyer will review the materials you've submitted and let you know what (if any) violations have occurred. If they find evidence to support that you've faced discrimination (it's so obvious), then they will pursue legal action on your behalf against the district. The way I understand it is that not only do they investigate your child, but all children in the district with IEPs and look very very closely for violations.

RE you Dept of Ed, don't be alarmed if they don't get back to you right away. When I call I get a recorded message asking me to leave contact information and they then have 3 days to get back in touch with me. But by all means, keep calling! Don't let them forget about you.

Take care,

Gwyn

[milivica]

>>>>The way I understand it is that not only do they investigate your child, but all children in the district with IEPs and look very very closely for violations.

REALLY!!!!! OMG that is so what I want!!! That totally fits in with the way my head runs, and the outcomes I hoped would happen but assumed was me being idealistic and unrealistic.

As for DPI, I started thinking about it, and actually I did NOT contact them. I mean, I contacted the 'contact' button or what ever on the website, however, I got an email back from a lady that I spoke to on the phone, and sent tons of info to, and she said (on the FIRST email to me):

First let me begin by letting you know that I am not the DPI. I'm not sure who you received my email from but I work for the Wisconsin Statewide Parent Educator Initiative (WSPEI). We are an organization that provides information and advocacy for families of children with special needs. The DPI often refers families to us. I would be glad to talk with you about your son and your concerns.

And gave me her number....and took lots of time to speak with me and ask me things, and ahd me send her tons of info, his IEP, the school arresting me if I visit, stuff like that. Well anyhow, I am rereading what she wrote, and can't decide if DPI referred her to me, or, if she's just saying that happens sometimes but not this time. And somehow I contacted her using the DPI site and meant to contact DPI. So, better safe than sorry, better contact DPI to be sure.

[gynwhyver]

Yep, absolutely!

Re filing a complaint with OCR, as I understand things, if you file a complaint with DPI regarding the same issues as with OCR, then OCR cannot continue to pursue your complaint until after DPI resolves the matter. Then if you disagree with DPI, OCR can get involved. So what you need to do is divide your complaints (and conquer :p ). With DPI you want them to investigate the lack of compliance to his IEP (not meeting educational goals/no time in reg ed environment/violation of LRE?), with OCR, you may want to address the fact that you'll be arrested if you step foot on their property to observe your son. Or the fact that he is isolated/denied recess, which is denial of access to services and programs reg. ed. kids have access to. I'm not sure what you may have already said to OCR, but you may want to just leave things alone with DPI...or else write to them about what's happening and ask them what they recommend you do. But stick with compliance issues with DPI if possible. I don't know, I think for me personally I'd rather have a district brought up on charges of discrimination than for failure to follow state law/federal laws, but that's just me.

Take care,

Gwyn

[milivica]

Ok, just sent to the library there, cause they say they can direct people.

Also, sent to the contact on the Superintendent of DPI (couldn't find the addy for the Super).

Can DPI and OCR simultaneously investigate DIFFERENT issues?

Mili

[gynwhyver]

YES!!! They can investigate separate issues. Like in my case, OCR is going to investigate illegal/inappropriate use of restraint that was used maliciously (occurred while behavior specialist was at school for meeting with me- they did this in retaliation for me requesting the behavior specialist, and they wanted to "prove" she is emotionally disturbed and not on the autism spectrum), and the Dept of Ed can investigate compliance issues - NOREP (placement) expired on 11/14/06, so she currently does not have a placement; district has failed to provide me with a copy of a new NOREP since 11/15/06 because I told them I would disagree with their placement decision and would request due process; she did not receive PT/OT services for 3 weeks, despite and IEP and NOREP agreeing to those services; district stating she is making adequate progress toward IEP goal of maintaining satisfactory grades yet earned 2 D's on her report card this past 9 weeks, which are unsatisfactory grades according to the grading chart on her report card; I'm sure I'm forgetting something....)

Two separate issues. One is involving what the fed/state law states regarding what the district's legally are supposed to do re education, the other involves blatant discrimination against someone. They're breaking the law because of a disability or in retaliation for an act (punishing Vince because they don't want you to observe him).

I was just a little concerned about your situation, because you've already filed a complaint with OCR and they are investigating - which is great! And I wasn't sure what info you included in that. So yeah, you can still file a complaint with DCI, you just can't mention anything that's in the OCR complaint, or it shuts down the OCR complaint.

Make sense? Cuz I think I just confused myself.

Take care,

Gwyn

[peglem]

When OCR resolved a complaint against the district I used to work for- the result really didn't change anything but the paperwork the district does to show they are in compliance. It is explained very well on the Indiana SPED lawyer site:

http://www.dphilpotlaw.com/html/complaints.html

I don't know how much the person who brought the complaint gets to participate in the process of resolution or can influence the monitoring of compliance, but everything on the link is, in my experience, absolutely true.

[milivica]

Gosh now I'm scared I should have not complained to OCR and DPI and so on...is this what all that on the link above meant?

Also on the link above this:

So, I always withdraw the complaint once I have received in writing the school’s promise to comply with the alleged violation we have charged. If the school fails to comply, we can always file another complaint or a hearing. If I do not withdraw the complaint investigation and no violation is found, I have harmed the parent’s right – in Indiana, at any rate – of bringing up that same issue in a due process hearing.

is what I was looking for a few posts ago, when I said I didn't know where it was but knew it had a blue background and white letters.

I really really like the way that Indiana atty spells it all out like that. I definitely lack any insight, hind site or any kind of 'site' in this area.

[peglem]

Its why you should get legal advice. I know you can't afford it- but I gave you a sight that might give you legal advice. Let's see- I think this one:

http://www.w-c-a.org/pages/how_indad.html

It seems like such a catch 22 situation, where even if you win, you lose. Seems like you need a resolution where you get to decide how progress on each IEP goal will be assessed. So, when IEP goals are written, include the phrase: as measured by... But that's getting ahead of yourself. You really need somebody who knows the ins and outs of the Wisconsin SPED sytem and can not just advocate, but intercede on your behalf.

[lisa6wks]

Mili,
I don't know how you are keeping all this straight, it has all gotten really confusing to me! In our county, when we do not comply with the IEP, the parent will complain, it will be fixed and if it is not fixed then we go to mediation. And of course then you can go to due process, however, I think things usually are changed by mediation. It seems to me that the IEP needs to be dealt with first. You can basically rewrite the IEP to reflect what you would like Vince's day to look like. I would definitely bring a lawyer and/or advocate to this meeting.

I know this probably sounds simplistic at this point, but like I said, I am totally confused by all of the things you are doing and have no idea how you are keeping all of this straight.

Lisa

[peglem]

But, Lisa(6w, not mili), it doesn't matter what his IEP says at this point, because they are not following it and won't let Mili see what they are doing anyway. I'm hoping they will fix things once they are contacted by OCR, then Mili could withdraw the complaint and get back on the IEP team.

[milivica]

Well, at this point, both DPI and OCR have been contacted by me anyhow. OCR is having an attorney look into the stuff I've said, dunno if they will proceed further than that yet. I think I need to call them, to clarify the whole catch 22 thing.

The advocate cannot attend this Tuesday, but I'm hoping my Dr. friend will, cause she had the same situation, and they gave her have 30 min/wk to meet with critical staff, a detailed sheet of information throughout her child's day, basically all the stuff I want and can't get. One large difference was, the aides that worked with her child GET autism.

Well, anyway, the advocate called me tonight and gave me things to focus on, and let me know to begin when I speak by saying that I have contacted DPI, and do now have an advocate who though she could not come wanted to make sure this meeting stays centered on Vincent's needs and these things are discussed - and then she gave me a list of things.

So, I'm not so freaked about Tuesday, more like a growing sadness that's really huge, I guess depression. Big surprise.

The case manager from the state will be there, so that's good. I won't be there all alone, although she doesn't advocate for Vince, at least I feel they're not as evil as they would be to me without her there.

Sooooo, the nice thing this weekend was finished decorating all the windows with pretty blue lights, so it looks soothing. It's nice. I slept most of the day, so the house is a total wreck. I just can't seem to stay awake unless I'm out of the house.

Dh lied to me about something STUPID he's lied about before, and it totally threw me. The more we're married, the more he acts like every bad stereotype of a husband. So now I have no allies at school or home. He wants to say sorry and stuff, no way. Fool me once, shame on me. Fool me 20+ times, f**k you. I shop for xmas months in advance little by little to afford it, and he blew $100 - selfish selfish selfish selfish selfish and thought I wouldn't know. I'm so hurt, he's the one person I really need to never ever lie to me, I can't handle it. If I were one of those ppl that puts clues together, he'd have been caught, so that's why it hurts me so. It's like if a man had a blind wife, and hid stuff from her by attaching it to their ceilings. I know he tricked me cause he knew I wouldn't catch on - so it's not so much what he did, it's that he knew I was trickable and took advantage of that, and pissed away money we don't have to piss.

I'm totally emerged in my kids and it's like he's not. Like they just raise themselves or something. And that ain't the guy I married, they guy who rubbed my feet and back every night before bed for years cause he knew I liked that. He's really changed. He only acts like himself when he's in trouble with me, and then, I don't accept it, no way. Suck up. I told him he should have spent the money on a hooker or affair or something cause he won't be getting laid ever ever EVER again. He's either my husband 100%, or my roommate, not both.

Anyhow. Just makes stress more stressful when it's at school and home. The big selfish jerk.

Ok, pity party over, back to Vince and school.

[Isabelle]

<<<<<<HUGE HUGS>>>>> Mili, I feel bad that I have no way/words to comfort you.

[milivica]

MEN! (end of subject ;) )

Well, tomorrow another IEP - school sent an agenda, time for me to speak or the RDI consultant is not on the agenda. So, I sent an email requesting that to be corrected. Got sent an email back saying that was not the 'purpose' of this meeting, that it is a pre-assessment meeting and if there was by chance spare time at the end of the meeting, then I could speak.

I asked the advocate about this. Bummer she can't come. Anyhow, she told me to respond to their shutting me out even before the meeting by writing them back and saying:

If this is a pre-assessment, then don't we need information to determine what needs to be assessed? Thus, we would have to build in time for me to address particular concerns relevant to his special education needs.

Which made great sense, and was about 2,000 words shorter than the response I planned to send. Imagine that, me, wordy?

Now....hot info I learned tonight from my RDI consultant that never dawned on me. Probably most moms already do. I send tapes every 2 weeks as part of the RDI program, to our consultant for her to review. When she checked the tape I sent of Vince and I reading, she said: If you are working on reading, your focus is on the book, but if you are focusing on emotion sharing, the focus is on each other. and that is SO where I was confused...see I didn't understand...I thought reading was about learning to read, I suppose you could say the mechanics or phonix of it. And although I do deviate and just look at the pics with him and have him tell me what the ppl are saying or feeling, I didn't see how that would really help him to read. NOW I get it, it's ok just to share emotion and focus on EACHOTHER and not the act of improving comprehension or pronunciation or whatever. And true, that will not help him to read better, but it will help him to love reading better, cause he'll have all those nice 'episodic memories'.

OH MY GORSH....I wrote everything above last night, and never hit submit.

--------------------------------------------------------------------------------------------------------------

So, we had the IEP. Totally different tone that before. The did let me speak with regard to pre-assessment stuff. Which, was fine with me. They finally let the RDI consultant speak, and acted respectful, like she was a part of the team. Which, she is, and a critical part at that. 'Adolf' claimed to be doing some of what the RDI consultant suggested (declaratives), honestly, she's not. It's scary that she thinks she is. After the IEP I signed whatever to let the RDI consultant talk to school about Vince.

So, unbelievably, I feel good after this meeting. I feel like all the threatening bravado they put on didn't work, and now they're ready to actually get down to Vincent's FAPE. It also might be, the cc I attached to my emails to school last night before the IEP, which showed the DPI and OCR and the advocate are now involved. Don't care what it is, just want to get rolling with this finally.

I feel the biggest point I made today, was we need to focus on FUNCTION, not skills. For instance, yes, he had much difficulty attending, but that is more a 'skill' that will happen naturally once he has the 'function' of ongoing appraisal to enable him to figure out what part of his environment (the teacher talking, the snow out the window, the person talking down the hall) is the priority at that moment. When he can do that, select priority from a working ongoing appraisal system, he will attend. Hope that makes sense, I'm a bit tired 'yaaaaaaaaaaawn'.

And, for today, I'll take him to recess still so he can get 2. It's just messing up too much of his day freaking out about it. The RDI consultant gave me tips about the transition from recess to school, so we'll see how it works. That woman (Amy Arnoff Lukos) is so fantastically awesome, you just don't know. I wouldn't have a pot to piss in, any hope or even ideas about what to do for Vince, without her. RDI is the first time in all these years, I felt I've been taken by the hand and told "here's what's going on, and this is what we do about it". I've never ever felt guided parenting Vince before like this.

So, who's taking bets in a few years, Carmen will be the one giving me a run for my money :rolleyes: .

Mili

[peglem]

Oh Mili, I was hoping the threat of OCR would make them get their ducks in a row! Maybe this can get resolved before OCR comes down on them and you'll be able to withdraw the complaint. This sounds hopeful! I was afraid, since we didn't hear from you yesterday that you'd gotten arrested or something!;)

[milivica]

Let's hope they do right now.

I'm just happy for a change. Although 'Adolfs' sudden change in demeanor (being 'sweet') is icky and perplexing. Like it's a trick or she has rage under the surface and authorities might find me unconscious with a #2 pencil with her name on it sticking out of my chest.

I thought some about OCR, and if it's true they do check all the kids' IEP's, if so then I'm not sure I would withdraw anything, know what I mean? Like, I just don't know what I'll do or what will happen until the decision comes I guess. I can say, that if school said, "we'll do everything you want for Vince if you withdraw your complaint" but that meant my kid would get everything at the expense of other kids, then no, I couldn't. Know what I mean?

So, we'll see. I was VERY pleased to make my point about function versus skill, and also glad to hear them say other than his disability, there is NO REASON he should be so far behind academically. Well hello! Then doesn't that mean they owe compensatory 'catch up' to him? Or at least that I have a chance to get that for him? Anyhow, in time. Right now he needs a solid proven plan to get him on the way to being on track. Then we can worry about catching up.

Although, I do feel like admin would be glad to make sure I get the chair with the wobbly leg, on the edge of the cliff with loose rocks, that hangs over a crocodile infested river. Ya know?

:) Mili :)

[peglem]

I thought some about OCR, and if it's true they do check all the kids' IEP's, if so then I'm not sure I would withdraw anything, know what I mean?

I think it depends on what your complaint to OCR was. They might check compliance with IEP's- if that's relevent to the discrimination. Its hard to say what action they'll take, but I hope its not just on paper. I'm just hoping that your school will take action to fix things b4 it gets there, because, even if its just on paper- believe me, they'll have a TON of paperwork to do. Its in their best interest to get things right before OCR comes down on them.

Well hello! Then doesn't that mean they owe compensatory 'catch up' to him?

If it can be shown that he fell behind due to their not providing services- yes, you can probably get compensatory services. I think NCLB policy should help your case here. Still, if they have paperwork to show they were providing all the services that he was entitled to- you might get squat. If you've got evidence that he was not in least restrictive environment as stated in his IEP, you've got a good chance of getting compensated with additional services. And if I was you (Thank God I'm not- sure wouldn't want to be dealing with this!) since the reason for inclusion in reg. ed. classroom was for social development- I'd try to get RDI sessions as compensation. Compensating for 2 years(or is it 3?) of lost academic skills- well how can they really compensate? Seems like they'd need some kind of incremental schedule, for when he needs to be caught up by. But, you've got people now to advise and guide you through this, right?

[milivica]

>>>>But, you've got people now to advise and guide you through this, right?

Hope so! Think so?

Talked more with OCR today, like 2 hours. I think I was giving them info they didn't want, and not answering their questions as they 'meant' them. But we got thru it. They are very blunt and business like, so it was no problem talking to them, I'm just nervous I drove them a bit nuts. We'll see what they wind up doing, it's up to them. If school is discriminating based on race or disability, I hope OCR investigates and what is right prevails. If they are not and I am wrong, then I hope OCR does not take the case. Ya know?

However....there is news that was SO GOOD for me to hear, I can't think of much else. I got an email from school, that they are contacting the RDI consultant for recess ideas!!! Just the notion that they intend to start contact with Vincent's consultant, is just so awesome to me...I'm guessing they will find out, that instead of racking their brains trying to get ideas that work for Vince, they can consult with her, get successful ideas in way less time, and continue that until they are in the RDI 'groove'. (now the fantasy part) And then all the kids that enter school that can benefit from RDI just 'get it' and benefit from it. Vince winds up super happy socially, as do other kids on the spectrum. Tah dah. School gets credit and kudos up the ying yang for their program, it's major successful for the kids not to mention majorly cost effective. Everyone wins! Staff eventually tells me now they see I was a biatch cause I was so desperate for them to do right for my kid, and other kids too. (Not saying RDI is the answer to everything, just saying it is the one thing our kids cannot do without, like a foundation on a house).

Ok, I know I'm totally carried away here - and I'm glad to be this happy. But just to hear they want to contact the consultant to set up a phone meeting to consult with her, WOW! This is the same staff, that treated her like dirt at first, wrote a letter to her and me to "clarify what her role would be, if any". So, I'm darn happy. It is and always was way more important that they do what is right for Vince now (and the other kids too) rather than going back in time and trying to 'punish' school.

Ok, gotta fly for now - how the heck does it get so late every night when I swear I'm going to bed early!!!

I would NOT be at this moment now, without you all. And I THANK YOU with all my heart, thank you thank you.
Lisa (Mili)

[peglem]

So, to what do you attribute this 180 the school is doing? Alluva sudden they seem so much more cooperative than they used to be! Congrats on the RDI consult! They should find out pretty quickly that the RDI consultant is full of easy to implement ideas that will make their lives so much easier- I know for you its all about the kids, but, trust me, the staff wants it to be easy and yes, good for or at least not bad for the kids. YAAAAAAAAAAAAY!!! I'm excited for you!

[milivica]

RDI is easy if you have someone who knows what they're doing, coaching you. It is basically doing 'manually' with kids on the spectrum, what nt kids do 'automatically'. It provides kids on the spectrum with a foundation that they themselves can then build on - like a house has a foundation, RDI gives our kids a neurological foundation they wouldn't otherwise have.

I'm really thrilled, just imagining Vince being understood, treated with understanding instead of using nt logic for my asd kid. Imagining staff apply it to other kids. I'm just happy - and if past experience with school has taught me anything, I better enjoy the joy, cause who knows how long it will last!

[gynwhyver]

Milli:

I don't know if you've tried this yet, but you can contact the state protection and advocacy agency for help. You mentioned Wisconsin in an earlier post, so here's the info for Wisconsin. If you need links for other states, let me know, or you can do a google search for protection advocacy agency, with your state name. All of these agency do the same thing: advocate and protect individuals with disabilities. I filed a formal complaint with my agency re the inappropriate restraint used in the classroom and all the other violations. I also spoke to DPE who was...well, let's just say, extremely angry...about the situation our district has put us in. Did you know that if instruction in the home is offered, that instruction, by law, can only be provided by a teacher certified to teach special education? I didn't, but do now. So when the district agreed to allow her grandma, who is not certified, to teach her, they broke the law. DPE were to call the district this morning, since the Superintendent lied to them about her current placement (she has none and he said she was receiving instruction in the home) and they were going to talk about why an emergency IEP wasn't called after she had been restrained (another law they broke) . Needless to say, Monday morning we have an appointment to look at another school, this one an hour and a half away from my home. Great school - even has a sensory integration lab - but way too far away. I'm hoping they can give us some ideas we can use in our district. But we'll see. And we should be meeting again this coming Friday...which just so happens to be the date her IEP expires.

Anyway, here's the info:

WISCONSIN PROTECTION AND ADVOCACY AGENCY
Disability Rights Wisconsin
131 W. Wilson Street, Suite 700
Madison, WI 53703

Phone: (608) 267-0214
TTY: (608) 267-0214
Toll Free: (888) 758-6049
FAX: (608) 267-0368
E-Mail: (Madison): wcamsn@drwi.org
(Milwaukee): wcamke@drwi.org
Web Page: http://www.disabilityrightswi.org

Executive Director:
Lynn Breedlove
E-Mail: (Madison): lynnb@w-c-a.org

WCA works with and for people with disabilities to protect their individual rights and their access to services. Our advocacy efforts help the people we serve and their families fully participate in the community.

WCA supports the self-determination of people with disabilities as they strive to:
Live, work and attend school in the least restrictive environment;
Receive the individual support that is right for them for as long as they need it;
Achieve greater independence and involvement in their community;

Stay safe from all forms of abuse or neglect, in an institution or community setting.

Best wishes,

Gwyn

[milivica]

Isn't that something, that schools (and maybe churches too?) are the only places that seem to be able to break laws freely, and there is no consequence. Kind of like if a murderer was caught a week after the murder, and got off cause he "wasn't currently committing a murder". Know what I mean? It's really such bu!!sh!t that there is no repercussion for laws broken in the past, it's a freebie. Let's see how schools would change for our kids, if they were LIABLE just like ANY OTHER law breakers would be.

I'm currently also communicating with Wisconsin Disability Rights on North Carroll Street...is that the same as the place you suggested? The woman I spoke to had TWO kids on the spectrum, and I'm so disappointed to say, I seemed to know more that her. BUT she gave me one piece of advice that was particularly meaningful I thought, which was I have to get others to speak for Vince at the IEP's, cause they will not listen to the parents, despite where she works they don't even listen to her.

I of course invited both her kids over for play dates. Let's see if she takes me up on it.

Am I the only one that feels like all kids on the spectrum are 'related to my kids, and feel normal inviting them into our lives? Just wondering.

Thank you for the address and info above...if that is a different place than the place I'm in contact with, I'll call there too and file too. I'm not disarmed by schools sudden 'change of heart' so to speak, and don't expect it will continue unless it benefits THEM somehow, not Vince. I have no desire for revenge, sadly, it would make all this so much easier. I really hate it that this will be upsetting to the staff/admin, and know they will never believe I still don't want this 'fight' so I won't bother saying it. I think until I actually would HEAR them say "we'd rather save money than do right by your kid" it's like somehow no matter how much evidence I see, I can't digest it. It's very hard to have ppl SAY one thing, and very subtly act another way, and make yourself believe the evidence when the words are totally different. It's hard for me and most ppl I would think.

Thanks you for more help! Let me know if your place is different than the place on Carroll and I'll contact them too.

Mili

[milivica]

Come Monday, school is doing a 30 minute consult with Vincent's RDI consultant. I'm very very happy about this. I hope they become as intrigued and blown away by the horse sense, simplicity, and effectiveness of RDI like I have. I'm very hopeful, but cautious and prepared too - I can't be sure of school's motives anymore.

Keep your fingers crossed and prayers coming.

:) Mili :)

[Isabelle]

Will do!!!!! Very HAPPY for You and Vince :)

[peglem]

This is huge, Mili. Whatever their motive, if they make a positive change, its good! I still want them to get in some kinda trouble, just so they'll learn they have no right to treat parents the way they treated you. I wish you could feel more confident that they'll follow through on the advice and information they get from the RDI consultant- but you sure can't have any confidence in them at this point. But, this has the potential of making a huge difference for a lot of kids, which is what you wanted anyway.

Prayers that good things are on the way!!

[milivica]

this has the potential of making a huge difference for a lot of kids, which is what you wanted anyway.

Exactly!

How could I feel right seeing Vince get this and other kids who also need it, not. But first, I still have yet to see if Vince gets RDI at school - bearing in mind that RDI is a way of life more than a program or therapy. Nt kids and adults do it automatically all day.

So, I'm still holding my breathe, but feel at least closer to one goal of him being understood at school, using asd logic to interpret his actions, not their own nt logic and motivations. Then responding appropriately would be another goal I want for him.

I'll let you know how it goes!

Mili

[peglem]

I noticed this had slipped back to page 2 and after all the time put into it, it deserves 1st page status!

[milivica]

I'll make sure, when new news happens, I'll post it here so it's all in the same place. Ya never know when it might help someone. For now, I'm laying low so to speak, they are not being 'defensive' with the RDI consultant, that matters a lot to me. I will have to revisit the observation issue again at the next IEP, and ask for Due Process if need be. And that's where it gets tricky...is doing that going to make them put the brakes on their cooperation with the RDI consultant? However, do I even have a clue (no) that they are following her guidance anyhow? So, I really do need to see it to believe it.

Meanwhile, Adolf is being 'sweet' which is so weird and awkward cause I know her the other way - uptight, ultradefensive, victorian, ready to blow a rape whistle if my kid says something nice like "you smell good like pancakes", I feel like she's planning to slice my brake lines, like she just seems to happy and relieved so must have some real bad thing to do to Vince that I won't be able to do anything about.

And nope, I'm not paranoid, I'm just a parent with kids in the school system! Funny thing is, I still don't have problems with the teachers, just $admin$.

[Isabelle]

Meanwhile, Adolf is being 'sweet' which is so weird and awkward cause I know her the other way - uptight, ultradefensive, victorian, ready to blow a rape whistle if my kid says something nice like "you smell good like pancakes"

You are so ultra clever and funny, :D and at the same time it is so sad the whole problem :( :(

[milivica]

Isabelle, I just love being told I'm clever or funny, totally makes me feel like "hey, I succeeded at humor, love it". Sadly this time, she actually said it was 'sexual' when he said she smelled nice like pancakes. Rather, she said it was because he was entering puberty (same thing). How ridiculous/sad is that?

UPDATE: Office of Civil Rights called asking for some more paperwork for their ATTORNEY. So, we'll see how it goes. I know for sure they treat Vince as they do cause of his disability, and possibly cause of stereotypes they do not even realize they have in their own heads, about lower expectations for children of color (as well as children with autism). As a parent, I have greater fears for my son's future cause I feel so much of it hinges on my ability (to be super-mom). I do not however, have lower expectations, not anymore, the opposite in fact. I expect him to have to do as well as his peers despite the crappy neurological hand dealt to him. And if I can pave a path for him correctly, he will do just fine - it's me failing him I worry about, not he failing himself in any way (does that make sense?).

[peglem]

C'mon Mili, we all know pubescent boys just go totally sex-crazed wild when they smell pancakes!!!:confused:

You ARE supermom! I wonder what our discussions on BT will be like in 12 years? Hard to imagine where our kids will be then.

[milivica]

Let me tell ya....ever hear people start a sentence saying "If there is a God..."? Well, if there is a God, in 12 years, every kid here will be posting on a thread complaining about their kids, jobs, solar panel prices, and us!!!

[peglem]

Just wondering how things at school are going?

[Isabelle]

mili, you are! promise never to lose your cool in front of those 'authorities' they are looking for any misstep from your part to describe you as a 'emotional' 'out of control' 'delusional' 'in denial', etc. so please keep your cool when you don't understand something ask them to clarify, write the answer and asked very politely if you could have another meeting to clarify some issues.
adding, if they report seeing some 'dangerous behaviours' in your son ask, to let you observe them in the school, good luck!

[milivica]

It's going super crappy...but I still have hope now that I've involved outside people and agencies.

Here is my last correspondence with school, over an incredibly simple issue...Vince came into the car, was angry and crying that 'Adolf' won't quit bothering him while he is on the potty. The day he told me, he said his butt was BLEEDING from rushing and pushing so hard, and he couldn't wash his hands or he'd miss snack. I tried to explain it to Adolf, no luck. So, I wrote the assoc prin who is now supposed to be my contact. Ok, the correspondence below:

1/03/2007

Dear ******,

Vince has been having trouble feeling harassed and frustrated by 'Adolf' when he uses the bathroom. Apparently while he is going the toilet which has a sensor flushes over and over. This happens due to any movement Vince makes while on the potty moving his bowels or when he is wiping. It may also happen because from me teaching him to flush after every wipe (to avoid the toilet clogging from too much paper). So, I asked 'Adolf' to please let him go in peace, and tried to explain to her why she hears the toilet flush.

From her perspective, she is unable to grasp that he is not 'horsing around in there'. I tried to explain it to her again (in the office 1/02/07) but had to give up. She obnoxiously thanked me for being a helper and helping her understand this. She is as always, unable to understand what I am saying, and condescending. I can only imagine Vincent's frustration, trying to explain himself to her all day.

So could you explain to 'Adolf' when he goes to the bathroom, let him go. Do not rush him, do not tell him to hurry or threaten him while on the potty that he will miss recess or any other activity he enjoys. He told me she wouldn't even let him wash his hands after going or he'd miss (some activity, I can't recall what he said). I assume this was his interpretation of her rushing him, that she did not say that verbatim. So, please tell her to let him use the bathroom and wipe and wash his hands without treating him like he's guilty of something - which she does I'm certain cause she can only think in neurotypical, not in Vince. 'Adolf' suggested a piece of paper in front of the sensor, fine with me, what ever it takes to accommodate her so my kid can potty in peace. I could deal with the continual condescending attitude if she were effective, but she has no ability to communicate with even the parents of the students, let alone the students (not my opinion - feedback from other parents).

As a parent, don't you think it's ridiculous I'm writing an entire letter, so my kid can use the restroom in peace? Wouldn't he be permitted to go in peace if he were a typical child? Yes.

I again ask, and it is a standing request, that Vince receive a case manager that can understand him...just as I would as the same if he were hearing impaired, that he have a case manager that could understand him. His communication is impaired, her not understanding him causes him much frustration, leads to behaviors that HE is punished for, cause he is not understood...that's is so unfair. If you like, I'll send his complaints daily which are due to 'Adolfs' inability to understand him. Get Vince an interpreter, or a case manager that can communicate with him, and his dad and I. You are still our contact, not 'Adolf', correct?

Also, at the next IEP, I am requesting his aides be present at that and future IEP's, just as is done for other parents. I asked this years ago, and was told it wasn't done. I have since found this is a lie, and it is. I need that communication, especially since I have none what so ever with his case manager.

Last, his father and I continue unable to observe our child at school, under your promise of arrest and charges being pressed on us. How long will this go on?

How did you determine how much observation we need to be full and participating members of the IEP team?

Why are other parents not only permitted observation, but participation in their child's class as well as 30 minutes per week to meet with critical staff?

You had said (as I listened to an IEP tape) that if my child were not in special ed, it would be different, I could participate in class, volunteer like other parents do. If anything you are doing that effects Vincent would be different if he did not have special needs, that is discriminatory.

-------------------------------------------------------------------------

the assoc prin sent back an email saying they'd get back to me in 5-10 business days, which means never, so I sent a new email but this time copied 2 agencies I contacted hoping my kid could potty in peace if I had outside witnesses. Below is what I sent...

-------------------------------------------------------------------------

Dear ******,

As upset as this made me when Vince told me, I think I was extremely calm in my first email, but I cannot wait 5-10 business days to receive a response regarding this issue.

My autistic grade schooler feels harassed by an adult teacher (Adolf) of the opposite gender, while his pants are off, on the potty. She verified what he'd said, but claimed she didn't feel she harassed him. But HE DID. He can go to the bathroom at home unaided, at stores unaided and at school unaided - for many years. He does not suddenly need one now.

How does that look to his 5th grade peers, having her treat him like that where other kids can hear and see?

Because Vince is not comfortable with her interacting with him while going to the bathroom, I am not and his dad is not. I will tell you what I expect, because this is not negotiable, and merits more seriousness and sensitivity than a 5-10 day wait.

If Vince is in some dire medical need anyone can come to his aide no matter where he is, even in the bathroom.

Adolf made clear she and some aides are soooo uncomfortable with Vince there is now even a no hug policy just for Vince. When he cries he is not allowed to put his head on their shoulder, but told to go self comfort 'under his table'. So obviously, I do not want Adolf or any female aides who cried 'pre-puberty' involved in his bathroom activities.

Though I can't imagine he would, if Vince needs assistance or to be checked on in the bathroom, let ***XX who he knows, is comfortable with, and the same gender as he is, ask him discretely.

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School's reply to follow....
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[milivica]

Lisa,
I do not know who the other two people are that you included the e-mail
message you sent me (ed.gov and warhawks). I was hesitant to write too
much information about Vincent in the last message as I didn't know who
was going to read it.

We have no issues with Vincent taking all the time he needs in the
bathroom. As with any child who does not return to the classroom
within 20 minutes of using the bathroom an adult will check on him. Because
Vincent can be heard from the hallway without opening the bathroom door
there is no need for anyone to enter the bathroom unless of course
there was a safety concern. Kathy and other adults have not and will
continue to not enter the bathroom with the exception of a safety issue.
If an adult should need to enter we will be sure to have a witness present.

The only difficulty with this plan is that Vincent is becoming agitated
with other boys that enter the bathroom (i.e. yelling at them). We
suspect that he feels this is infringing on his privacy. Do you think
we should consider having him use one of the individual bathrooms so
that he doesn't have this anxiety/concern? If you do think we should,
would it be best for you to talk with him about it?

I would like to know the names and titles of the other two people who
received the e-mail message from you. I am incredibly disappointed
that you would negatively blast 'Adolfs' name and job title to other
people and not even identify them. This could be considered
harassment.

------------------------------------------------------------------------
Actually I think that would be defamation of character, had I done that. Notice, how the story now changes to Vince getting agitated (thanks for telling me NOW, and to Vince slamming doors. Bad old Vince! So, my final reply to school.....
-------------------------------------------------------------------------

1/04/07

Dear ******,
I received your email responding to Vincent and him using the bathroom, which got into other issues not related to Vincent. Let me respond.

This is about Vincent feeling harassed by Adolf, and my inability to communicate this to her. Vince needs to be able to potty in peace. I could break down and explain each facet of what going potty in peace means, if you need me to do that. As far as the private bathrooms, as far as I knew he was using the private bathroom. I don't care what bathroom he uses, as long as he doesn't feel harassed.

Adolf was not negatively blasted by me what so ever, her own actions reflect negatively upon her however. I approached Adolf, you, dir. of student services name, principal name, superintendant name...the conclusion from you all was, if you try and observe your child further at school, you will be arrested and we will press charges for trespassing. Now somehow Adolf is the victim...Vince was told he couldn't hug, receive hugs, when he tried to cry on Ms. X's shoulder was told not to or his tears would ruin the material. Now somehow Adolf is the victim? Vince has never once had his core deficits addressed or understood by staff nor has any child there with autism, despite that being the entire reason his behavior impedes his learning, the entire reason he is on a first grade level despite there being no intellectual reason why he should not be at grade level. Adolf is devoted teacher, but not effective, that is a fact not a blast.

I was told if I didn't like it, to seek legal recourse. I have it in writing from superintendant's name, on tape from dir of stud services name, me saying over and over that I don't want it to go that way. I still don't but have no alternative. When you suggest someone seek legal recourse, don't you think there will be information and communication passed between myself and that person or agency? So I have been and will continue, to reach out for legal recourse to any person or agency I feel will help Vince receive FAPE. Just as you forward my emails without my consent. You have no right to insist on any information from me, about that. If you are disappointed, it is because you knew how badly I did not want to seek outside help, and are shocked, not disappointed, that I did so. School cannot bend and break the law. Dir of stud services name cannot direct IEP's so no one can speak but her, and all school staff looks at her for a nod yes or no, which cannot be seen on a tape recorder. Dir of stud services name knows how to 'play the game', I do not. I'm just scared for my child, and unable to work with school anymore. Not my choice. Yours.

I wanted to work with school, I still do, how many times did I ask you and others for that? But without Vince receiving FAPE which he cannot possibly without the behavior that impedes his learning, addressed. And with the spirit of cooperation you have given me by threatening me with arrest, and making me the only team member not permitted to fully participate, what the heck do you expect me to do? I will fight till he is 21 if need be, for what the IDEA act stands for. If my child is receiving FAPE, if school were willing to work with me instead of suggesting I take legal action, I wouldn't need to involve others.

Well I don't even have time to proofread this, I have to go get the kids. When ever you want to resume working WITH me, WITH my husband, in the interest of FAPE for Vince, just let me know. You have that option. I do not.

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So tell me, why can't I just tell Adolf how Vince feels, have her actually consider and process what I say, and be glad to have more info? I don't expect her to be a mind reader after all. She does not 'hear' me, Vince, or anyone that is talking outside her old rusty box of old rusty thoughts. I really, really, REALLY, don't get it. She's got some mental thing I don't understand, like 'collectors' do. I get it and give her credit for her well meaningness and devotion...but when one of your students bites himself bloody every time you play games with him the moment he starts to lose (not Vince) do ya think maybe you get the clue that it's too much for him, and stop playing it over and over hoping to ram nt-ness into his brain....if Vince were epileptic, would she put him in welded body armor during fits so he wouldn't move, therefore, be cured of epilepsy? I don't get her, I don't get her, I don't get her. I'm his mother and continually seek help and guidance to better understand and parent him - is that supposed to be shameful to say "I don't know" cause she absolutely will not do that.

In addition to this, and all the other crap that's accumulated since (October was it?) they have decided not to do testing on Vince for the FBA (Weichman or Weishel or what ever that friggin test is called that measures IQ and stuff). I am not in favor of or opposed to this, but, think we need to decide together and reach some agreements in lieu of the info we now cannot get from the test...such as the fact Vince is not in the general curriculum due to his deficits which cause behaviors that impede his learning, not cause he has a low IQ or some delay that would cause him to be behind. The idea that he is unable to be tested, well, we need to verbalize why that is so - that is relevant information to his record, know what I mean?

So, peglem, any more questions? Or have I sufficiently made you afraid to ask (sorry!!!)

I will say, I sure needed that vent!

If anything pivotal happens for Vince and the other students with autism, I will be sure and post it, and how he got what ever it is. Till then, assume it's a big mess.

You are brave for bringing up this thread girl!
I love ya!
Mili (Lisa)

[peglem]

Love you too, Mili!

This whole thing is obscenely crazy! I did read it, every word! Did they give a reason for not testing him? Isn't he due for an eval anyway, before he goes to middle school? It sounds like they want no evidence that they have failed him. Its so much more convenient to make it all his fault.

Did they ever implement (see! I'm not scared, still asking questions!) any RDI stategies on the playground? Or is he still a recess of 1?

[peglem]

I just have to come back to this....

From ***. Principal: (unfortunate little abrieviation isn't it?)

The only difficulty with this plan is that Vincent is becoming agitated
with other boys that enter the bathroom (i.e. yelling at them). We
suspect that he feels this is infringing on his privacy. Do you think
we should consider having him use one of the individual bathrooms so
that he doesn't have this anxiety/concern? If you do think we should,
would it be best for you to talk with him about it?


She must know what the boys bathroom is like....Its probably the single worst place to be at any school. There is no way to supervise w/o invading the privacy of the kids, but there are plenty of NT kids who will go all day at school w/o using the bathroom at all, because of the problems in there. I can't believe there is an educator alive who is not aware of this. If she already "suspected" this was a problem, then why was it not dealt with and this whole thing wouldn't be happening. Is this the first time it dawned on her to let him use the private bathroom? And is it so hard to say, "hey, Vince, if you need to go to the bathroom you can use this one so those kids won't bother you." And I'll bet Vince is getting plenty bothered by the other kids...they just know how to hide the harrassment and they know nobody will listen to Vince if he tells on them. They do things like kicking the door open or throwing wet paper towels over the door- anything to get a rise out of their victim. Poor Vince.

WHAT IS WRONG WITH THESE PEOPLE?

[The Pogue]

I can't begin to respond to all the crap and double talk they are throwing around. I'm more than ready to step in kick ***.

Shall I do for Vince what I did for Boulderbum's son? I'm still licensed in Wisconsin, and I have MLK Jr. day off. Shall I plan a roadtrip to the Madcity?

Call me if you want to talk...

[peglem]

Shall I do for Vince what I did for Boulderbum's son? I'm still licensed in Wisconsin, and I have MLK Jr. day off. Shall I plan a roadtrip to the Madcity?

licensed to do what?

[The Pogue]

licensed to do what?

Kick uncooperative teacherbutt.