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: &qu