Aaaarg! IEP time [Archive] - BrainTalk Communities

peglem

05-04-2009, 11:01 PM

So, I find that IEP time is much more stressful now that I'm keen on RDI. So, much easier when I didn't know any better.

Here's what her teacher emailed me as proposed objectives:

Here are the goals that I plan on writing in the IEP. These are prerequisite skills for social interaction. So, once she can master identifying emotions of others in pictures, we can work on her identifying others emotions in the classroom with her peers. She also participates in activities that involve her interacting with her peers, so I will write that it will continued to be informally worked on in the classroom.

Functional Academics:

* Select pictures of common objects by pointing ( I will make a list of objects that Allison doesn’t know)
1. Select objects by adjectives (i.e. where is the red block, where is the big car) and by function (give me the one you write with)
* Select pictures of social interactions (show me playing, show me talking)
* Select pictures representing emotions (happy, sad ,ect.) and match emotion pictures to other students emotions in the classroom

Daily living goals:

* Use sign to indicate that she needs to use the bathroom
* Throw away garbage when finished independently
* Clean her area of the table following meals and snacks with a model
* Wipe herself following using the restroom

My rant:
She has been working on identifying emotions since she was 3yo in preschool. It hasn't worked to promote social/emotional development yet, and I see no reason this should be any different in the up coming year. Really i think she can already label all those pictures, but whether she WILL do it for them is another story. I don't think this is the way to promote social/emotional development anyway. I don't know of any infant that had to learn to label pictures before being able to learn "social skills". Identifying emotions isn't going to help her connect to other people.

How is she going to determine objects that Allie doesn't know? And learning to name things out of context is not how people learn new vocabulary anyway.

Identifying things according to function does at least require some thinking so that one is not so bad.

Daily living skills:
She used the sign for bathroom for years and years to tell people she has to go, and still uses it with me when we are out somewhere (at home she just goes when she needs to like everyone else) so if she's not doing that, they must have somehow made things worse in that area.

I think she needs to learn how to cooperate with others cleaning 1st-the social interaction is more important to me here than the cleanliness. Work is more fun when its shared. (I want her to learn that too.)

Yes, she needs more work on wiping her but, and obviously I want her to do it independently. But, if they would just use indirect prompts- like "Okay, there's poop on your butt." Instead of "wipe your butt". I know that doesn't seem like a huge difference, but the 1st one gives her information that she has to decide how to react to. The second one just teaches her to follow a command.

I don't know how to fix this right now. So much of the beginning RDI is changing the teacher's behavior. I just can't see them letting us have input there....We'll have to figure out something.

Aspigander

05-04-2009, 11:17 PM

I don't know of any infant that had to learn to label pictures before being able to learn "social skills".

Maybe point that out to them.

Yes, she needs more work on wiping her but, and obviously I want her to do it independently. But, if they would just use indirect prompts- like "Okay, there's poop on your butt." Instead of "wipe your butt". I know that doesn't seem like a huge difference, but the 1st one gives her information that she has to decide how to react to. The second one just teaches her to follow a command.

Okay, now why does it make me squirm to think that they are in that close proximity to her butt? Is it really what I'm imagining?

peglem

05-04-2009, 11:29 PM

Well I don't see a way to teach her how to wipe w/o close proximity. She's still toddler-like as far as butt wiping goes. But, I think part of that is lack of self awareness. I don't think she realized she had a back side until she was 5 or 6 years old. Anything she couldn't see didn't exist. I think she also doesn't see why she should wipe: Soreness doesn't occur immediately and once it does, that's just incentive to not wipe. And, the smell doesn't bother her and she lacks the ability to gauge the perceptions of other people. I've just been glad she's not a poop smearer.

milivica

05-04-2009, 11:49 PM

Peg, you are a wonder to me. I'm reading your posts - you really 'get it'. You're freaking amazing.

Did you ever get the RDI Program and Education book? If not, get it. Gives tons of ideas on what to do, but not in the 'vague' way the RDI program does...you won't need a consultant to use the book. I like how it takes things Vince does and tweeks them from instructional to social, and the variation of the ideas in the book is unlimited. I know you'll be able to pull out the ideas that work for Allie, tweek them if need be. I'm telling you, it's a joy to read that book, I did not read one single idea ever offered by school in that book, refreshing.

See if your Consultant has any suggestions...I know RDI doesn't even recommend school until Stage 5, but Vince is still in Stage 3 so I'm sure there's an idea of two she can give. Was there anything in what I sent that could help? I noticed you posted about declarative language rather than instructional (I think you said indirect prompt) - nice!

Get that The Relationship Development Intervention (RDI®) Program and Education. It's probably $25 or so with shipping, not horrible.
http://www.rdiconnect.com/resources/viewResource.asp?pid=227

What was suggested to me, and hopefully I'm not too transparent, is I say I'm doing 'this' or 'that' at home, and I ask if school can help me. They can do similar things with her, but with different objectives it changes the entire experience for her, changes the gains to be made from the activity. Know what I mean?

tgrimes

05-05-2009, 12:00 AM

but the 1st one gives her information that she has to decide how to react to. The second one just teaches her to follow a command.

.

Cool information on the direct vs. indirect prompt.
Also I agree with what you say about backing off on the social goal that has been in place since age 3... sems like she must not be getting much out of all that work, huh?

peglem

05-05-2009, 12:07 AM

Cool information on the direct vs. indirect prompt.
Also I agree with what you say about backing off on the social goal that has been in place since age 3... sems like she must not be getting much out of all that work, huh?

Well, and her teachers premise that this has to come 1st...huh? I get the feeling we're talking about very different things.

Aspigander

05-05-2009, 12:43 AM

peglem

05-05-2009, 12:58 AM

Ah, okay. It just seems like...well, and no offense intended, I'm just glad I never had to have anyone from the school help me with wiping my butt. lol

The indirect prompting thing is interesting. Have to say, that's never worked so well with me. I'm remembering something, I was probably in my late teens at the time? Maybe early 20's? Old enough I should have been able to figure it out. Anyway, my dad and I were at the boat. I had some clothes that needed washed, and the marina had laundry facilities. The plan was my dad would take me up and show me how to use those particular machines (which differed from the ones at home, of course), but it got late in the day. So my dad said that he would take my clothes up, wash and dry them, but not fold them (as that could be done at the boat, doesn't require teaching me how to do something, etc.). I said okay, sounded good to me. So he brings the laundry back down in the bag and lets me know they're done (remember, they're not folded).

Now, of course, he was indirectly prompting me. I wasn't getting it. And the clothes remained in a rumpled mess in the bag. Had he said: "I will wash and dry these clothes, and YOU fold them", there would have been no problem. For some reason, when he used what Mili called "declarative language", I just wasn't getting it.

I hope you get through that IEP okay. It sounds like the school is...interesting to deal with.
Yes, I understand, and that is exactly why I want them to work on this- in a small way right now, since she's just beginning. But, if she practices this and expands on it, the neurology will develop and it will become part of her normal wiring.
We've been working on this at home. Like instead of telling her to put her dirty bowl in the sink, just say "This bowl needs to be washed." Then she has to figure out to put it in the sink so it gets washed. Little things, but its about changing OUR behavior, not hers. Its difficult because we are so accustomed to just telling her what to do. So, we need to practice it until it becomes part of our neurology!:D

peglem

05-05-2009, 01:03 AM

peglem

05-05-2009, 01:19 AM

Another thought Aspigander, If your dad had given you an indirect prompt: "These clothes aren't folded yet." when he brought the bag back, I'll bet you'd have known what to do.

Aspigander

05-05-2009, 01:41 AM

Another thought Aspigander, If your dad had given you an indirect prompt: "These clothes aren't folded yet." when he brought the bag back, I'll bet you'd have known what to do.

Well, he did say something to the effect of "These clothes are back down here." I don't remember the exact wording, and I don't think he specifically said they were not folded, but that would have been obvious from our previous conversation (that he would wash and dry, but not fold the clothes).

The indirect prompting is really something that likely would whiz right over my head. Using the previous examples you gave about Allie ("there is poop on your butt" or "this bowl needs to be washed"), or the statement my dad could have made "these clothes aren't folded yet"...I would have probably thought: "Oh, my butt has poop on it. Okay." Or "This bowl needs to be washed, okay." Or "These clothes aren't folded, okay." It kind of ends there. Do you know what I mean? There's a disconnect between the thought of "These clothes aren't folded" and "I should fold them". I only know now what my dad meant because my mom had a word with me when she heard about what happened. "So you just let them cool down all rumpled up?" I think my response was something like: "Yeah, what else was I supposed to do. He just said he wouldn't fold them. He didn't tell me to fold them."

I guess my neurology is at a point where it does best with instruction. lol

roadracer

05-05-2009, 04:29 AM

Daily living skills:
She used the sign for bathroom for years and years to tell people she has to go, and still uses it with me when we are out somewhere (at home she just goes when she needs to like everyone else) so if she's not doing that, they must have somehow made things worse in that area.

I think she needs to learn how to cooperate with others cleaning 1st-the social interaction is more important to me here than the cleanliness. Work is more fun when its shared. (I want her to learn that too.)

Yes, she needs more work on wiping her but, and obviously I want her to do it independently. But, if they would just use indirect prompts- like "Okay, there's poop on your butt." Instead of "wipe your butt". I know that doesn't seem like a huge difference, but the 1st one gives her information that she has to decide how to react to. The second one just teaches her to follow a command.

the wiping problem reminds me of a recent thread where wiping came up, I am sure you remember. Anyway, could also be sensory or motor skills thing or any of the things you listed. So wet wipes could solve the problem, I am reminded of the TV comercial for the Kandoo kids wipes.

The going to bathroom during school was a problem for me, pretty much because I didn't have anyway to tell the teacher I had to go, so I would just try to hold it and the standing up in class and having everyone look at me I did not like. Believe it or not, it was not till the 5th grade till I felt comfortable standing up while the rest where siting and they made up a card that I could give the teacher to say I needed to use the restroom, so it was not till then that they solved the problem. Way way past when it should have been solved

Kristen (ColeysMom)

05-05-2009, 11:55 AM

Pegs I know this is going to sound ridiculous, but I think that everything you brought up in your first post should be raised at your meeting.

I would just really try hard not to express frustration that could be misinterpreted or misunderstood. I'm sure that's the crux of the issue and MUCH harder to do than say...your points are good ones and too important to squelch!

Like with the facial expressions. Certainly if they've been working on it for this long, there needs to either be a new approach or maybe 'skip' it.

What sense does it make to get hung up on something that is preventing her from moving forward.

At this point there is likely SO much more that she can be successful at, can't they just 'postpone' that for a bit?

I have to wonder too how bored she is with it if they've been REALLY working on it for this long...I would even guess that she's got it, but is sick of seeing it.

As for the direct or indirect method. I think you are right, at least that's what I've been reading, what Dr. G really promoted, and what does tend to get Coley motivated as well.

Paying attention to the way I phrase things (and watching DH) I'm getting it better (like you said it's hard to retrain yourself!)...but it's easy to see how a control battle can prop up...clearly telling someone every single move, versus developing the skill to figure it out themselves is MUCH more valuable...but more than that, one is rather demeaning (although not intended) the other is quite motivating....

With that said, I can also see Aspiganders point...so I think what could help in some cases...

"Your but still has poop on it." (pause) "What should you do?"

Clearly if she knows how to react to the first statement, there is no need to prompt with the second...but in new situations (or with new subject matter) maybe...

Who knows maybe this could work with facial expressions too, although I really think it should be shelved for a while.

Anyway, I can understand your frustration, and I think it's more than ligitimate. I encourage you to discuss that with them. As I imagine Allie is likely pretty frustrated as well.

Trust yourself and Allie!!!!

peglem

05-05-2009, 12:33 PM

Well, the problem they are trying to solve is that SIBs erupt whenever they try to get her to do anything. So their idea is to give her tasks that she already is successful at, to reduce the stress/frustration of trying something she is not familiar with. But, her curriculum has been steadily "dumbed down" over the last few years and I don't see this really helping. When you're looking at "what can she do?" its a pretty short list.
I get the (unstated) feeling that they feel she is just headed for institution anyway, since they don't seem to be able to do anything with her.

I've got to formulate a reasonable reply...carefully worded to avoid offending them. I'd feel better if I had a cohesive plan to give them instead. Some way for them to try what would be successful for them (RDI). At this point though, RDI would really consist of teacher objectives, not student ones.

Kristen (ColeysMom)

05-05-2009, 01:19 PM

Pegs, you are so smart and creative, particularly when it comes to these types of things...

Maybe pretending that you are the teacher and Allie is a student and you are making recommendations, might help to seperate the frustration out, and give you the perspective you need to 'talk' their language without the Mommy emotions ???

I dunno if that will help...I just know you have it in you (I'm sure you know that too)...and Allie needs you to knock some sense into these dim-wits! That must be a lot of pressure...

Try talking a BIG BIG step back and looking at things from a much wider view.

I wish I could throw something as amazing as you have for me your way...

http://smileys.smileycentral.com/cat/11/11_2_104.gif

Aspigander

05-05-2009, 03:07 PM

Peglem, may I be nosy? I'm just wondering, how old is Allie if I may ask? Just purely out of curiosity, as I get a sense she might be older than I thought previously (i.e. earlier in this thread or maybe another you mentioned about when she was 5 or 6, and I guess I kind of thought she was 5 or 6).

peglem

05-05-2009, 03:46 PM

milivica

05-05-2009, 04:16 PM

Mili, Okay, I ordered that book, I've been thinking about it. Just the description on rdiconnect sounded like it was just a series of "hurrah, look what these people did" stories, selling RDI. So, I thought it might not be helpful. The IEP meeting is in 2 weeks, so I wanted to expedite shipping but there was no option offered for how to ship. Hope it comes soon.

Yeah I hate the 'hoorah look at what these people did' books. That's why I gave away the "My Baby Can Dance" book they sell at RDI. I remember ten years ago the 'hoorah' books were great, inspirational and hopeful. Then one day while reading one, there was a part about how some woman was in her vacation villa in France depressed about her daughter's autism...I cracked, that was it for me. I want answers that work, ideas that work, want to know what to DO.

I think the ideas you'll get in RDI and Education book are right up your alley, you'll get it. Someone with no RDI exposure would enjoy it, but not as much I think. It was such a gush of relief for me when the school SLP bought her own copy. Overall, staff still does not get it that RDI works for autism, they think it worked for Vincent. So, the approach that 'this is working for Allie' rather than 'for autism' has worked for us so far.

I'm real glad you got the book. As you read it, you'll just keep saying, "that makes sense" and "why didn't I think of that", especially since you already totally get the core/purpose of RDI. I think this book is going to perfectly gel with your way of thinking as a teacher and mother.

Lisa

Aspigander

05-05-2009, 04:49 PM

Ah, okay. I think it was when you mentioned your consultant specializes in teens and adults, I got to thinking: "Now waaaait a minute. Allie's not a teen, is she?" And lo and behold, she is.

Does the IEP team know that you are a former teacher? You'd think that fact would cause them to really take your input into serious consideration. You're not just a 'layperson' mother, but can think like an educator as well.

peglem

05-05-2009, 11:45 PM

So, our RDI consultant has agreed to meet with Allie's teacher. All i have to do is find a way to broach the subject with her teacher. So, that's good news, eh?

milivica

05-06-2009, 04:56 AM

No way!!!!! OMG - nice!!!!! You'll figure out the right way to get her in, you will!

I am shocked, I'm so happy you just don't know!!!!!

I sort of took the angle that the RDI consultant in an IEP should be able to give us all the answers, kind of putting all Vincent's behavior on the consultant's back, hoping to give school a sense of relief since they were plum out of ideas and had been for years. I made it sound like I was a bit suspicious of her, so they'd think I trusted them but it was the opposite, I was suspicious of school. Know what I mean. You go lady, do your tricky nt stuff.

Take a lot of B vitamins so your nt neurology of yours will be in tip top shape, lol.

FANTASTIC news Peg, just fantastic!!!!!

Kristen (ColeysMom)

05-06-2009, 10:47 AM

http://smileys.smileycentral.com/cat/4/4_16_1.gif http://smileys.smileycentral.com/cat/4/4_1_112.gif http://smileys.smileycentral.com/cat/4/4_16_1.gif http://smileys.smileycentral.com/cat/4/4_1_112.gif http://smileys.smileycentral.com/cat/4/4_16_1.gif http://smileys.smileycentral.com/cat/4/4_1_112.gif http://smileys.smileycentral.com/cat/4/4_16_1.gif

WOOHOO!

OMG! How awesome!

Ok, my first reaction is to bring her to the IEP meeting...but before I could even get here & type that, I thought...hmmm, how open minded are they going to be if you do that. They'd probably be more defensive than anything and it might not help at all...Thinking of that, Mili's approach makes some sense...it would be hard for me to do that though...I'm not good at setting things up like that...I'd likely be more nervous and not be able to think constructively and in the end not pull it off...

So, at this moment I'm thinking that maybe you could ask them to include her in the IEP meeting. Assuming you get a yes, then ask further (maybe) it would be helpful for her to connect with 'key' team members a head of time to get a better sense of trouble areas or whatever. Perhaps that could provide an opportunity for her to talk to her teacher and start a dialog prior to the meeting...I bet it would be good for her to touch base with the behavioralist too!

I dunno...I'm sure you'll come up with a better idea...this is definately something you have better insight with!

I'm SO excited about this!!!!! WTG! Pegs!!! http://smileys.smileycentral.com/cat/18/18_1_204.gif

Aspigander

05-06-2009, 11:12 AM

Kristen, from my understanding, you can invite whoever you wish to an IEP, with or without the school's approval.

I see what you're saying about not making them defensive, but at the same time Peglem shouldn't feel she has to avoid doing what she is legally within her rights to do in the interest of Allie. I mean, what if they say no, they don't want the consultant at the IEP, yet Peglem does? Still Peglem's right to invite her.

Kristen (ColeysMom)

05-06-2009, 11:49 AM

Oh yes! Lauren we are within our rights, but at a minimum alerting them to the invite will avoid feelings of being ambushed. It's just kinda an approach more than a 'process'... ya know.

Aspigander

05-06-2009, 12:12 PM

Ahhh, okay. Gotcha.

When I read your post, I thought you had suggested that Peglem 'ask permission' to invite the consultant as opposed to alert them to the invite, and then either invite or not based upon their response.

I do agree with you, that it might be best to give them a heads up.

ETA: I have to say, I guess I got spoiled having an IEP team that was actually either in sync with my and my mom's wishes, or at least rational about them. My special ed case manager in high school, at least my second one (don't get me started about the first one, I could go on for days...maybe I will at some point), when it came time for IEP's, he would sit down with me and discuss everything first. One of the things he would say to me was: "Okay, so who do you want to invite?"

peglem

05-06-2009, 12:50 PM

Well, that's kinda moot anyway because the consultant is not able to attend the meeting. She will not be able to meet (due to her schedule) with the teacher until after the IEP. I called yesterday to try to move the meeting, but because of a whole variety of things, was unable to do so. But, was told at the meeting we can pretty much do a "continuance" (my word for it) and plan for amending it at a future date.

At this point I know I don't like what is being proposed for her goals, but am very unsure of what to suggest as an alternative. Actually, I did suggest a few things prior to the teacher's proposal, but they were completely ignored- Well, I guess not completely: I think the prerequisite social skills comment (which was underlined on the original email) was a way of saying that she thought my suggestions were too advanced. What I thought might help is to work on make pretend play as a way to encourage seeing other perspectives. My other suggestion was to work on Allie making declarative statements. (communication is a definite weakness)

I also wanted them to work on changing a sanitary napkin to prepare her for upcoming "events".

I sent the teacher a list and description of the core deficits and said we'd like them addressed in a small way...nothing in the goals remotely addresses any of them.

I can't imagine spending a whole year teaching her to sign bathroom when she needs to go- for one thing she can and does do this when we are out somewhere, but working on that is going to be a real bore for her and I think it sets her up for resistant behavior, as will the emotion face cards- how many times are you going to make her identify those cards before she decides you can cram that that activity in a hidden orifice.

Keggy

05-06-2009, 01:26 PM

Maybe point that out to them.

Okay, now why does it make me squirm to think that they are in that close proximity to her butt? Is it really what I'm imagining?

Just to note... i had a client who had me check her butt for this same thing, a good five feet away I did it.

Kristen (ColeysMom)

05-06-2009, 02:04 PM

Oh that's unfortunate Pegs...but I guess it's still positive that they are already open to input on the IEP from the consultant.

I think if I were in your shoes, and this were Coley...I'd be inclined to kinda throw my hands up in the meeting...not in a give up on Allie way...but more in a 'this approach needs to be scrapped' way...

Kinda prepare them for the notion that there needs to be a modest change in the approach. And sorta leave it there... Don't modify anything, maybe take the time to just kinda put issues on the table to think about until you can all trouble shoot with the consultant???

BTW, when you say declarative statements are you meaning vocally or signing?

And as far as 'too advanced'...I have to wonder how it is that they KNOW that it would be too advanced. I might be misinterpretting, but I'm getting the impression that she's not demonstating much due to her behavior...which I know I'm singing to the choir that it's probably a statement she doesn't know how to communicate, but understand that they likely see it as an uncontrollable meaningless outburts, so moving on from that...how exactly DO they know what her level is?

I HAVE to wonder if her "outbursts" aren't a loud statement about the BORING material that they should cram...

I think a good start at a new apporach might begin with some challenge, maybe a little interest (as in a NEW idea)...and hey why not toss in a little fun too...especially if it's something that she already feels success with?

Dagnabit...I wish the consultant could be at the meeting...

Hey, what's supernanny doing these days?

peglem

05-06-2009, 02:36 PM

BTW, when you say declarative statements are you meaning vocally or signing?

I mean using her aug comm device mostly. However, it keeps getting broken at school and takes 6-8 weeks to get repaired, so she more often than not doesn't have her device. But, they could even use pecs to have her feel in the blank, like "My favorite color is _____________." or I like __________.

Tried last year to work this in w/ the emotion thing by getting the to make picture books with icon sentences (to help her learn to use her device more effectively)that she could finish. Like: "The girl is happy because________." That way she'd also be attaching the emotion to some kind of causative event. The picture would obviously show a happy girl in a situation that is causing her happiness. This was actually all worked out with the speech therapist, but I don't think it ever happened because her device was broken the 2nd week of school. Then again about a week after she got it back, then about 2 months after that (but that 2 months covered the holidays, so not 2 months of school) and I don't really remember, just know that her aug comm objectives have been marked NA for most of the year. I gave them the download to use on the computer (its just like her device, but on the computer screen), but they said she just always goes to the song page.

I do want to try to make some changes before the IEP meeting so that when the consultant meets with the teacher there'll be something a bit better to work from, instead of reinventing the whole darn thing.

Kristen (ColeysMom)

05-06-2009, 02:55 PM

peglem

05-06-2009, 04:26 PM

This is probably a HUGE deversion...but how the heck does it keep getting broken?

And for Pete's sake...if she likes the song page so much...can't they figure out how to use that? Uhm, like maybe a reward, or maybe even as part of the lesson...there are words in songs right? Better yet, don't songs generally reflect emotion...WTF! GRRR!

Is it possible for the school to have a device there? Shouldn't they? Aren't there other kids? Am I in dream-land here? I dunno!

I know you are frustrated Pegs and me getting there too isn't helpful...sorry!

Mostly its get broken from her smashing her head on it, but she's dropped it a few times as well. But, the district pays extra for a fell time aide just for her, sothere should be adult supervision at all times, preventing it.

And yeah, using those songs for make pretend would be a perfect idea (and would probably make it so she quits going to that page as well), making little "characters" that she could use to act out or perform the song- Most are things like Old MacDonald and would lend themselves well to that.

Having the device on the computer is a cheaper (free) and possibly better way then purchasing a device-and they have that. (The school district contracts with Allie's school to provide for her educational needs and would have to shell out @ $8000 bucks to purchase one). She doesn't break the computer. But, after the 90 trial, it loses the voice function, so the songs won't work anymore-it just displays the title when it sings. A reading activity we have done at home is to make sentence strips of the lines to the songs. She has to read them and put them in the right order for us to sing the song. She can do that if we sing a line and wait for her to select it, then sing the next line and she finds that one, etc.

Aspigander

05-06-2009, 06:21 PM

Peglem, you just said something in the mental blueprint thread that got me thinking. I'm gathering when Allie has her communication device (when it's not broken) she can communicate effectively with you, but not so much the school? And that's why she keeps melting down at school but not so much at home?

Could you sit her down with her device, at home, and ask her what her thoughts and feelings are about school? What does Allie want to work on? At 14, I can't help but think she has to have some ideas, even if she has trouble communicating them. I'm not sure if she even could with you, but maybe it would help her to know that someone is actually wondering what her wishes are, even if she can't communicate them? Does that make sense?

Heck, maybe even take her into the IEP, with her device, and ask her for her input right there in front of everybody?

peglem

05-06-2009, 08:01 PM

]Peglem, you just said something in the mental blueprint thread that got me thinking. I'm gathering when Allie has her communication device (when it's not broken) she can communicate effectively with you, but not so much the school? And that's why she keeps melting down at school but not so much at home?
Nope. Gee, Lauren, you keep hitting on all these things we're having problems with the school on. She doesn't use her device very well. She needs help in that area. The school has a full time speech path who specializes in AC devices (they have 3 other full time speech therapists as well). We have, many times requested that she be given weekly one-one sessions with the speech therapist until her use of the device improves (not forever). They refuse to do this because "their model" is to integrate therapy into the instructional setting. Last year we compromised by them saying the speech therapist would work 1-1 with Allie during "center time" about 45 minutes/week. They would not put that in her IEP, but assured me that it would happen. Then, her device was so often out for repair....
But, even with that, I think her comm problems have a lot to do with her core deficits anyway. She is able most of the time to let us know what she wants or needs, but conversations...not happening.

Could you sit her down with her device, at home, and ask her what her thoughts and feelings are about school? What does Allie want to work on? At 14, I can't help but think she has to have some ideas, even if she has trouble communicating them. I'm not sure if she even could with you, but maybe it would help her to know that someone is actually wondering what her wishes are, even if she can't communicate them? Does that make sense?

Heck, maybe even take her into the IEP, with her device, and ask her for her input right there in front of everybody?

See above. Another thing we do to try to find out what's happening is ask a question and give her "finger choices" to answer with. For example we might ask, "Do you want to go to Walgreen's (we stick out a finger for Walgreen's) or the Dollar Store? (stick out another finger for the dollar store) Then she chooses whichever finger represents what she wants. She can even do this with 4 or 5 choices. If what she wants isn't one of the choices we gave, she'll point to an "unmarked" finger. Again, this sort of thing is a tool to get by...but I sort of want her to be able to actually communicate someday, not neccessarily speak (that'd be great too) but at least to be able to have a conversation that doesn't amount to us giving her choices among what our best guesses are.

Aspigander

05-06-2009, 08:33 PM

They refuse to do this because "their model" is to integrate therapy into the instructional setting.

Meaning?

They would not put that in her IEP, but assured me that it would happen.

And why, exactly, would they not put that into the IEP? For some reason I'm not liking the sounds of the idea that you're supposed to take their verbal word for it. That leaves way too much wiggle room for them to not work on it (assuming her device is not out for repair) and say "well it wasn't in the IEP, so..." That's what written IEP's are for. Darn it! That has me irked, as I'm sure it does you.

Honestly, if they won't put stuff they say they'll do in the IEP, or you can't get it worded the way you want it, I'd be tempted not to sign it and start going through channels until they word it in an acceptable manner. That actually happened once with me...when I was 18 or 19 and signing my own IEP's. I wouldn't sign it one year the way it was written. My team was actually behind me, but the district superintendent was trying to tie their hands and take the I out of IEP. Luckily I didn't have to go far through the channels, I wrote a letter to the superintendent, trying to maintain a friendly and professional, but firm 'this is unacceptable' tone, he came to the building in response and we had a little chat, and we got things worded in a more acceptable manner to where I felt comfortable in signing it.

See above. Another thing we do to try to find out what's happening is ask a question and give her "finger choices" to answer with. For example we might ask, "Do you want to go to Walgreen's (we stick out a finger for Walgreen's) or the Dollar Store? (stick out another finger for the dollar store) Then she chooses whichever finger represents what she wants. She can even do this with 4 or 5 choices. If what she wants isn't one of the choices we gave, she'll point to an "unmarked" finger. Again, this sort of thing is a tool to get by...but I sort of want her to be able to actually communicate someday, not neccessarily speak (that'd be great too) but at least to be able to have a conversation that doesn't amount to us giving her choices among what our best guesses are.

Aha! That gives me an idea. I know you'd rather have her be able to communicate with more than 'finger choices', but what if you gave her 'finger choices' of goals? Pick some goals and assign them fingers and have her pick one. Then maybe you can go to that IEP, give them your list of goals, and I'd love to know what Dataman's response would be when you say: "Here's my list of goals I'd like to see implemented. And this one right here, we asked her with finger choices, and Allie picked it herself."

Perhaps her core deficits are not yet to a point where she can understand about goals. But it sure would be great if she could. Darn it, Peglem, I'd love it if you could go into that IEP and PROVE to them that Allie is smarter than the average rock, and that they need to start treating her as such!

peglem

05-06-2009, 08:57 PM

Perhaps her core deficits are not yet to a point where she can understand about goals. But it sure would be great if she could. Darn it, Peglem, I'd love it if you could go into that IEP and PROVE to them that Allie is smarter than the average rock, and that they need to start treating her as such!
HeeHee, you did it again- one of the suggestions I made was working on setting goals for herself and work towards them...it was apparently ignored.

You know, on the one hand, I kinda sympathize a bit with the school because I do think my kid is a pretty tough nut to crack...nobody seems to know what to do with her. (except the RDI consultant) But when they become hard headed about trying something different, especially in the face of their repeated failure...all sympathy is replaced by bitterness. Yet, I feel like I have to be such a careful diplomat when speaking to them if I want to get the best I can for Allie.

Aspigander

05-06-2009, 09:14 PM

HeeHee, you did it again- one of the suggestions I made was working on setting goals for herself and work towards them...it was apparently ignored.

WHAT??!! Good grief! In my district, there was an entire semester long special ed class DEVOTED to teaching the student about special ed laws, IEP's, goal setting, self-advocacy, etc. The teacher who became my second SE case manager taught that class (I think my first case manager wished I wasn't adhering quite so well to what I was learning in that class -- honestly I think she thought that my IEP team consisted of just her, and the rest of us were warm bodies). Heck, pack your bags and move to the district I went through (or at least the district I went to elementary and HS in (my home district, went to middle school and 9th grade in a neighboring district)).

I can understand the sympathy being replaced by bitterness. Heck, all I know of the situation is what I'm seeing typed on a computer screen, and I'm getting all fired up. lol

Yet, I feel like I have to be such a careful diplomat when speaking to them if I want to get the best I can for Allie.

I get that. Trust me, I do. As much as I'm all fired up in these posts, I know you can't just march in with all guns blazing and let them have it. And I believe I was very diplomatic when handling the issue with the superintendent. BUT, while being a careful diplomat, I also let him know that I knew there were proper channels to go through, that I really didn't want to go through those channels, but was prepared to if I had to (that class I mentioned above sure came in handy!). It is possible to treat people with dignity and respect, but still let them know if you find something is unacceptable. Know what I mean?

Kristen (ColeysMom)

05-07-2009, 09:05 AM

it sure would be great if she could. Darn it, Peglem, I'd love it if you could go into that IEP and PROVE to them that Allie is smarter than the average rock, and that they need to start treating her as such!

This is really what's firing me up too! Which I'm sure is pretty much what is really getting you all twisted up too...

Frankly if they have made up their minds that Allie is unteachable...then there is likely nothing you can say or do, short of Lauren's idea to change that...and even if Allie DID go in there and participate in the meeting, it sounds as if they would still not respond well.

Honestly Pegs, I'm getting the real impression that a MAJOR shift is in order. And I KNOW that's WAY easier to type...but there has GOT to be better options available to Allie than this mentality! If there isn't then I think it is time to raise holy he!! at some level.

The fact that she hasn't mastered these goals...which I find completely doubtful...should fall squarely on their shoulders NOT Allie's!

Have you ever tried to talk to Allie about school? About her frustrations I mean?

peglem

05-08-2009, 01:42 PM

I wrote this to Dataman:Just checking in. I am not necessarily suggesting the removal of her helmet, only wondering if it could be a contributing factor in her SIBs. I am curious about the results of the investigation you mentioned in your previous email. Also wondered how the research into RDI is progressing?

here is his reply:As of early this week we have identified escape/avoidance is the primary reinforcer of SIB. Currently we are working on reinforcing the sign “break” and not the SIB, this going well. We are still not in a position to remove her helmet, but perhaps at some point. I have searched for RDI articles, to date I have yet to identify a peer reviewed article describing the research, methods, procedures, or outcomes. What I can find are several website purporting its benefits. In contrast I have attached a bibliography of over 300 peer reviewed articles on ABA.

Here is what I got from her teacher in response to my request that she meet with our RDI consultant:As an educational intuition, we pride ourselves on using effective evidence-based practices. I am not that familiar with the techniques and effectiveness of RDI. If you would like to send me some peer reviewed journal articles on RDI, I would be happy to read them prior to the IEP. Here are some really interesting peer reviewed research on the effectiveness of Applied Behavior Analysis (ABA) in the classroom. Please feel free to pass them onto your consultant as well.

I have completed The Assessment of Basic Language and Learning Skills (ABLLS-R) with Allison prior to writing her IEP goals. The ABLLS-R is a curriculum-based measure that consists of a comprehensive hierarchy of skills for 25 areas that address language, adaptive behavior, classroom behavior, and social interaction (ABLLS-R; Partington, 2006). I have taken her IEP goals straight from goals in the ABLLS-R that she was unable to do and that are prerequisite skills for social interaction. I can send you the results of the ABLLS if you would like.

So, I'm stuck.

Aspigander

05-08-2009, 02:03 PM

<Sarcasm on>
Oh yeah, that's the ticket. Way to go. Keep doing the same old peer reviewed stuff, don't try something that's working at home because you can't find anything peer reviewed about it. Just keep doing the same thing, day in and day out, because, hey, it's peer reviewed. Ignore the fact that it OBVIOUSLY ISN'T WORKING!!!! That's a great way to educate a special needs child.
<sarcasm off>

Okay, I'm not saying that peer reviewed stuff is always bad, nor am I saying that you should just do everything that's not peer reviewed. BUT if something ISN'T WORKING at school, I'm failing to see why it should be continued just because the methods are peer reviewed.

Heck, where is the I in IEP here? Seems to me they're expecting Allie to fit into the mold that all of the autistic students are supposed to fit in, and if she's not fitting with their way of doing things, then they see her as a hopeless case. From where I'm sitting, that's not Individualized.

And I'm assuming your state has laws about Free APPROPRIATE Public Education? Oh wait. Let me guess. If the method isn't peer reviewed, than it's not appropriate even if it works at home, and if it is peer reviewed, it's obviously appropriate even if it JUST PLAIN DOESN'T WORK, right? Geez!

It seems as if these educators need an education of their own, on the definitions of INDIVIDUALIZED and APPROPRIATE.

I am assuming that the helmet is SIB damage control? Just curious, is that required outside of the school setting? I ask because if she manages with you without needing the helmet (if I am correct that it is SIB damage control), then you must be doing something right that they could learn from.

Kristen (ColeysMom)

05-08-2009, 02:05 PM

UGH! How irritating!

My immediate response is...DOY! I think by now you have a pretty firm grip on ABA, it's claim to fame, and how it's working with Allie. It's insulting that they would even throw this at you like that, particularly with your background. I think Lauren asked the other day, now I have to wonder too..do they know you were a teacher? Doesn't matter though!

I think I'd write back something like:

Thank you very much for all the information on ABA. I am very familiar with it's process and it's reported success with other children like Allie. I am also well aware of it's ineffectiveness with Allie, working with her, using these techniques for the past 14.5 years. According to your own reports, they are consistent with my observations as well.

As a result I have no other alternative but to conclude that ABA is not the right approach for Allie. With that said I have done a great deal of research into alternative methods. I have tried other therapies and interventions, however none has shown the results I've seen to date with Allie using RDI.

Our consultant has offered to discuss this with you, should you be willing to consider an approach that might result in more success at school for Allie, and perhaps others that are stuggling to meet goals using ABA techniques.

I look forward to meeting with you on D-day!

Thank you in advance for all your assistance.
Kindley,
Your worst nightmare!

PS. You should be aware that there is a gang waiting for a positive, enthusiastic response. Should it not come, I can not be responsible for their actions.

Aspigander

05-08-2009, 02:19 PM

PS. You should be aware that there is a gang waiting for a positive, enthusiastic response. Should it not come, I can not be responsible for their actions.

And that gang includes a VERY fired up aspie, yes, that's right, someone on the autistic spectrum, who is utterly disgusted that you are continuing to insist upon using methods that just aren't working on Allie. If this positive, enthusiastic response is not forthcoming, I would advise you to sleep with one eye open, and if this very fired up aspie heads your way, stand back. And by the way, she doesn't give a rip whether something is peer reviewed or not if it is not working.

peglem

05-08-2009, 02:25 PM

I am assuming that the helmet is SIB damage control? Just curious, is that required outside of the school setting? I ask because if she manages with you without needing the helmet (if I am correct that it is SIB damage control), then you must be doing something right that they could learn from.

B4 the helmet, (she's had it for @ 1 year) we were working on Allie resisting her head banging impulse. There was some success with that. We relented and got the darn thing at the school request- I wanted it to be used as an OPTION for her when the impulse became too overpowering so she could still be safe. They use it all the time, all day long. I assume they do remove it when she goes swimming. So my suggestion to dataman was simply that I wondered if perhaps she felt that the helmet was keeping her safe, so she does not have to try to resist the impulse. I didn't say remove the helmet and didn't advocate its removal...Just thought it was a BEHAVIORAL idea worth persuing.
She has a softer helmet that we use at home (the school one has a hard shell-I'd like to keep my teeth, thank you) for when she is having trouble resisting the impulse. She only wears it when needed and can take it off, or not put it on as she wishes. And she doesn't bang as much at home, partly because we aren't demanding tasks very frequently, but also because, (and mind you, this is not a peer reviewed study, just my opinion) it hurts.

Kristen (ColeysMom)

05-08-2009, 02:27 PM

Lauren you're awesome!

BTW...I think we can get some peer reviewed materials on effective motivational (aka torture) methods.

peglem

05-08-2009, 02:35 PM

I sent the teacher's reply to my RDI consultant. She basically said she was amazed that the teacher was so insensitive, close minded and arrogant. She's going to network with other consultants to see what we might be able to do.
She also said the ABLL's social skill prerequisites we terribly wrong...NOT prerequites to social skills.

Aspigander

05-08-2009, 02:36 PM

So my suggestion to dataman was simply that I wondered if perhaps she felt that the helmet was keeping her safe, so she does not have to try to resist the impulse.

Ah, okay. Kind of like the helmet replaces the idea of working on resisting?

Aspigander

05-08-2009, 02:38 PM

Lauren you're awesome!

BTW...I think we can get some peer reviewed materials on effective motivational (aka torture) methods.

I can have a rather twisted sense of humor when need be. :p

Aspigander

05-08-2009, 02:40 PM

the teacher was so insensitive, close minded and arrogant.

I think those are some pretty accurate adjectives.

peglem

05-08-2009, 02:51 PM

I think those are some pretty accurate adjectives.

Yes, and coming from my consultant, pretty harsh. She's always very careful about criticism and looking at the good and positive, even when people disagree with her.

Kristen (ColeysMom)

05-08-2009, 02:57 PM

I agree 100% with both Lauren & the consultant!

Pegs, I'm getting more & more angry too. I mean I was pretty annoyed anyway, but normally the more I think on things the better perspective...I'm getting more & more po'd here...

I have 2 ideas now running through my head:

#1 (reminder) you have every right to have whomever you want in the IEP meeting. If they refuse to welcome any new ideas you CAN attempt to cram it down their throat...if that's the only way they will swallow it...that's of course THEIR choice! Reschedule that meeting so that the consultant is available and chew their arses to the bone! At this point what is there left to lose?

#2 Seriously consider alternatives here...I'm sure you have already...considering their BLATENT disregard for effectively teaching her, there has got to be something, even marginally better, if not consideribly better than subjecting her to these complete inept f'heads every day!

I'm having a fantasy of you (or me actually) marching into that building and taking her out! They don't deserve to even utter her name! Never mind to be able to influence her in anyway shape or form! Dispicable, shameful, gut-wrenching motha-f'ers! They have their f'n nerve to talk to you that way...to continually imply that she is nothing...of course Allie responds this way...if they talk about her, and to you like this, what the he!! is like for her when they aren't being 'polished'...oh no...no, no, NO!

OMG! I just want to slap them...you know like...SNAP OUT OF IT!

peglem

05-08-2009, 03:12 PM

#1 (reminder) you have every right to have whomever you want in the IEP meeting. If they refuse to welcome any new ideas you CAN attempt to cram it down their throat...if that's the only way they will swallow it...that's of course THEIR choice! Reschedule that meeting so that the consultant is available and chew their arses to the bone! At this point what is there left to lose?

We can't reschedule the meeting. It has to be held by the 20th or they are out of compliance with state requirements. Additionally, the folks from the highschool district are going to attend so we can get her registered and whatnot for highschool. But, as it was pointed out to me by the fellow who schedules meetings, we can always call a meeting to make changes to the IEP whenever we want to. If I thought chewing their arses would get me anywhere, I'd buy a big bottle of ketchup and get the job done right!

#2 Seriously consider alternatives here...I'm sure you have already...considering their BLATENT disregard for effectively teaching her, there has got to be something, even marginally better, if not consideribly better than subjecting her to these complete inept f'heads every day!

Oh, I've looked and looked for alternatives. If she were higher functioning or younger there'd be some. You don't seriously think we'd be going through all this crap if we had a viable choice, do you?
I really, really don't think I'd be able to do home schooling...I don't have the emotional reserves to handle it.

Kristen (ColeysMom)

05-08-2009, 03:25 PM

Do you really think that giving them a piece of your mind won't help...

I am really thinking the idea of the squeaky wheel might be effective at this point...afterall what has being nice and understanding gotten you or Allie? And I'd be inclined to point that out to them too! I think they do need to know how frustrated you are with them, and moreover that you are NOT a friggin idiot, that you work your arse off and aren't flicking things at them on whim...however if they would be receptive that, you could start thowing loads of ideas at them, afterall there are lots...and certainly any one of them could be more effective than ABA since as Lauren so eloquently put it...IT DOESN'T WORK! They might want to actually review their own friggin reports so that they can synthesize the data and make that conclusion on their own. Course you may need to pay for a statistical analyst to come in and crunch the numbers since they are so f'n narrow minded that they can not even see what is DIRECTLY in their face!

Ok, it's settled, what time and where?!

What going on with supernanny these days? Does she still visit?

And yes, I know you have looked & looked...I know...I don't think I could do it either...I need a cigarette...

It shouldn't be like this :(

Aspigander

05-08-2009, 04:08 PM

It has to be held by the 20th or they are out of compliance with state requirements.

Oh that's nice. They're SO worried about compliance with state requirements when it comes to deadlines, but I must ask where that compliance with state requirements is when it comes to Free APPROPRIATE Public Education? Actually, you might want to point that out to them. This "education" that she is receiving is obviously not appropriate for her since (broken record syndrome here) IT ISN'T WORKING!!!! I'd strongly suggest you point out to them the irony about their state compliance with getting the meeting done on time, alongside their blatant lack of compliance with FAPE (which if I'm correct is a federal law, which is more important to follow than state -- don't get me wrong they need to comply with state laws but they really need to comply with fed laws too).

Just a reminder, if that IEP is not worded in an acceptable manner to you, you have every right not to sign in agreement to it and start heading through channels. Allie should not have to be forced to endure all this crap.

Kristen (ColeysMom)

05-08-2009, 04:57 PM

Once again I have to agree with Lauren here. It does seem that they are quite good at applying the rules when it's helpful for them to avoid their responsibilities (or should I say avoid teaching Allie) and ignoring those that require them to use their noodles!

I mean absolutley no disrespect here, but I'm starting to wonder if autism is contageous...they are being so ridiculously inflexible that it's embarrassing!

I do think that making a few calls might really be in order here. Seriously how much more neglectful should they be before an advocate or someone else is brought in?

I do know that making enemies doesn't help, but seriously what could be worse than this...I shutter to think...considering some of the crap we've discussed here...but short of human rights violations...considering basic teaching, what could be worse than nothing?

I need to go...got some stuff to do tonight, and a busy weekend...I hate to walk away from this...it's not going to leave my mind that's for sure!

[[[Pegs & Allie]]]

peglem

05-08-2009, 05:40 PM

I appreciate you all validating my feelings about this and you've given me some ideas as far as formulating a response to both Dataman and teacher. I'm going to wait until I hear back from our consultant before I answer. She asked for a few days to get input from others. She said a peer reviewed, evidence based study is due to be published in august, but isn't ready yet. What bugs me the most is that they are unwilling to even consider the possibility of anything other than ABA (outside of pharmaceuticals). I looked at a few of the studies on ABA-there are really too many (I've not seen any in using it with adolescence or adult subjects) to even select wisely. But, though I don't want to turn this into a debate over the efficacy of ABA, I don't see any studies that suggest or even come close to a 100% success rate.

Aspigander

05-08-2009, 06:27 PM

Kristen (ColeysMom)

05-08-2009, 09:33 PM

Well I'm glad Lauren has calmed down, because I haven't! :mad:

Here's your next research project Pegs...they are so F'N interested in peer reviewed or scientifically proven...go get them something to support giving Allie meds...I dare you. Boneheads huh?...that's generous! It's even insulting to bones!

I HATE these people!

Aspigander

05-08-2009, 10:05 PM

Well I'm glad Lauren has calmed down

I'm sure that's just a temporary condition. :p Trying to think of positives, I figured when Allie gets into a different environment, maybe the new folks will use their noggins a bit more.

Of course, if these current idiots continue their idiocy, I'll go straight back to very fired up aspie mode. And if the new folks are idiots, I'll be in very fired up aspie mode next year.

peglem

05-08-2009, 10:25 PM

Good luck, and keep us posted. :)

Hey, you know, I was just thinking. With Allie headed into HS, perhaps the folks there will deal with things better and be more receptive? I'm just thinking, maybe things will improve since next year Allie will at least not have to contend with these boneheads? Of course, maybe the folks at the HS will be boneheads too. Hopefully that possible light at the end of the tunnel isn't a train...

Geez, thought I'd answered this before, I must have gotten distracted and didn't send.

So, not to get Lauren upset or anything, but....
If it was just a matter of waiting out the last 3 weeks of school, I'd just walk away from this whole mess. But, there'll be no new boneheads...Allie attends a private school that has contracted with the district to provide for her educationally, since they(the district) are unable to do it themselves. I've checked out the highschool district's SPED programs, and believe it or not, best case scenario is that she stays where she is now. So, the only real change is who foots the bill, unless the HS district decides they do have a program for her (I don't think that'll happen, but w/ budget cuts...).

Aspigander

05-08-2009, 10:38 PM

Oh! Well! No new boneheads, eh? Guess I relaxed a little too soon.

It just totally stinks that they're being so dense!

Aspigander

05-08-2009, 10:49 PM

peglem

05-08-2009, 10:58 PM

Oh, and by the way, why are they so obsessed with only doing things that are backed by peer reviewed studies? Every time I make a move, or try something, I don't stop and go: "Hmm, let's see...is this peer reviewed?" I'm not saying peer reviewed is bad, but what's the obsession with it?

This is the latest in education (well, within the last 10 years o so) and the govt.
and this is how they satisfy the "A" in FAPE. Nobody can say its not appropriate if they have evidence proving it is. I'd rather their evidence was my daughter's progress. And anyway, I'm not asking them to stop doing ABA (although it IS ironic that they have data showing it has been ineffective with my child), I just want them to modify (really, just slightly) the approach they take with her and give her a few decent objectives to work on. She really isn't ready for an all out RDI program yet and they'd need some training first anyway. Couldn't they just accept a little input from outside their own religion?

Aspigander

05-08-2009, 11:17 PM

and this is how they satisfy the "A" in FAPE. Nobody can say its not appropriate if they have evidence proving it is.

Okay, is everybody ready for this? *Takes deep breath, fills up entire lungs*

IT IS NOT WORKING!!!!!!!!!!!!!!!!!!!!

How is it evidence of being appropriate, just because it is peer reviewed, when it is so obviously ineffective (and they have that data showing as much)? Seems to me, that, at least for Allie, their current approach is INappropriate. Why? Well, just in case I haven't mentioned it a dozen times already, it isn't working. Their peer reviewed "effective" methodology ISN'T WORKING!

I just want them to modify (really, just slightly) the approach they take with her and give her a few decent objectives to work on. She really isn't ready for an all out RDI program yet and they'd need some training first anyway. Couldn't they just accept a little input from outside their own religion?

Well, right. Exactly. Whatever method they use, ABA, RDI, a combination, or none of the above, you want it to be effective, you want Allie to actually progress. Their methods, as they are implementing them, are not effective.

How many years have they been doing this same ineffective stuff, anyway?

Aspigander

05-09-2009, 04:35 PM

Peg, may I ask what state you're in?

I just relayed the whole story to my mom. I didn't even say they took the I out of IEP until she said: "So they're doing an IEP but not individualizing it?" I also mentioned how you mentioned they satisfy the A in FAPE, with the peer reviewed studies as evidence of its appropriateness. She said: "But it's not appropriate for the individual student if it's not working for that individual student."

Anyway, she mentioned that around here there's something called Michigan Protection and Advocacy, or something like that, where they specifically help with special education issues. She asked if there might be something similar in your state.

Kristen (ColeysMom)

05-09-2009, 05:13 PM

Lauren, I've got a minute so figured I'd answer for Pegs...she's in Arizona...and since I was curious myself...even knowing that Pegs is the research queen plus she knows her way around this crap...I figured I'd google to (at least) satisfy my own curiousity...here's what I came up with:

http://www.raisingspecialkids.org/resources/education.aspx

http://sepac-scottsdale.org/2009/phoenix-childrens-parent-action-committee/

http://www.azdhs.gov/phs/ocshcn/links_resources/protection_advocacy.htm

There are more but this is a lot...

I'm going to read on and see if anything looks good...

Kristen (ColeysMom)

05-09-2009, 05:31 PM

Poking around I found this one too:

http://www.arizonaautismsupport.org/serviceproviders.html

Pegs, this one seems to have a good number of programs for kids Allie's age...there is even one that helps with IEPs...not that I think you need help, just think that an outsider might be able to knock some heads together, ya know.

I didn't go nuts, but did see that most are non-profit, and some take insurance...so maybe some help, maybe some programs, maybe someone that has a big stick?????

peglem

05-09-2009, 06:31 PM

So, here is a draft of how I thought i might respond to Dataman:

Thank you for sharing research sources on ABA. I am aware that it has been the subject of voluminous studies and by and large has been found to be effective with many children. The data you have collected on Allie's behavior would seem to indicate that it has not yet been effective for her. Dr. Y stated that you have been through the book twice with her and still are not achieving any substantial gains.
I do not want to get into a debate over scientifically proven methodology. Studies are in progress on RDI and are scheduled to be published in August. My only goal is to develop strategies and methods that are appropriate for Allison and that will advance her development. I do not believe abandoning ABA is the answer, but believe changes should be made in instructional approach and methods of engaging her in activities. I suggested RDI only because it is a program based in research on how the typical child develops and thought we might borrow some common sense ideas from it, to work on repairing some of the neural underconnectivity that is internally driving some of her undesirable behaviors.

So, whadda ya think? I want to ponder on it and get feedback before I send it. I'm actually kinda proud of how civil I managed to be, and yet also found a way to get "common sense" in there.

Aspigander

05-09-2009, 06:45 PM

I love it! Good job!

Trouble is, using common sense would require them to actually put forth some effort, which it seems they are loathe to do.

But I think that's a great letter to send Dataman's way.

By the way, reading the emails you've been posting going back and forth, I just got to thinking something. This may seem off the wall, but do school staff address her as Allie or Allison when interacting directly with her? I'm thinking they either call her Allie in direct interactions, and are more "formal" when talking to you, or just plain old call her Allison. If the latter, could the change between "mom and dad call me Allie" vs. "the teachers call me Allison" be confusing to her and contribute to her school meltdowns, do you think?

Just something that popped into my head.

peglem

05-09-2009, 07:10 PM

Aspigander

05-09-2009, 07:32 PM

Yes, when you get your hands on that peer reviewed research, please post it here. I'm on the edge of my seat! :D

Kristen (ColeysMom)

05-09-2009, 08:06 PM

Pegs, I think it's awesome!

I hate the word 'only' though

I suggested RDI only because

I think there are more reasons than 'only' that for suggesting it, right?

Like the fact that you are seeing some promising things from her?

And I also felt like it was not done...but that may be because I'm waiting for you to wack him one that will make his head spin...

I did LOVE LOVE LOVE the common sense line...perfect!

I think also I might use a different word in place of 'only' in this statement too:

My only goal is to develop strategies

Like maybe my primary objective or something like that???

ok, gotta fly again...hope that adds some value...LOVE it though & I too am VERY proud of how civil & professional you were able to be...I certainly wouldn't be able to do that...however I AM still available if need be...I'm short & 'compact', DH says I can be like a pit bull...I don't let go once I get my teeth into something, LOL!

In your case, only for Allie, I am available free of charge! :D

peglem

05-09-2009, 08:40 PM

Thanks, Kristen. How about this:

Thank you for sharing research sources on ABA. I am aware that it has been the subject of voluminous studies and by and large has been found to be effective with many children. The data you have collected on Allie's behavior would seem to indicate that it has not yet been effective for her. Dr. Y stated that you have been through the book twice with her and still are not achieving any substantial gains.
I do not want to get into a debate over scientifically proven methodology. Studies are in progress on RDI and are scheduled to be published in August. My primary focus is to develop strategies and methods that are appropriate for Allison and will advance her development. I do not believe abandoning ABA is the answer, but believe changes should be made in instructional approach and methods of engaging her in activities. I suggested RDI because it is a program based in research on how the typical child develops and thought we might borrow some common sense ideas from it, to work on repairing some of the neural underconnectivity that is internally driving some of her undesirable behaviors.

I'm not sure if it is finished. I almost feel like the more I write, the more he'll be able to turn on me. Really just want to get the main point across and wait for his response. Also thought of copying to the teacher in response to her last email and then in a separate email go through each of the proposed goals, giving our feedback on them.

In your case, only for Allie, I am available free of charge!
Shouldn't that be "primarily" for Allie? ;)

Kristen (ColeysMom)

05-09-2009, 09:17 PM

ESPECIALLY for Allie! Good catch! ;)

Now I don't like the word 'yet'...how much longer would you like to wait...how many more chances, etc. I think it's time to admit defeat...ABA is not working (wait I feel like I've heard that somewhere before)...let's call a spade a spade, ya know...

I do like it better ...still kinda looking for the axe to fall though...I think that's MY issue...and do agree that less is more...I'll read it again tomorrow...see if it seems dangly or more my wanting to kick some hairy butt!

Great job!!!! :D

peglem

05-09-2009, 09:40 PM

Well, see, I know ABA is his god and for now, we don't have another way to work on those behaviors AND keeping data on those behaviors would help us to get an idea on what affect changes in programing are having on her...so I don't want to completely throw it out, just makes some changes that help it work. I don't think there were any goals on her IEP this year that she wasn't capable of mastering, but they have not been able to engage her much to get her to work on them. She has lost the motivation and doesn't follow the carrot dangled in front of her. RDI would help with building those internal things that drive us to try new things and enjoy the pleasurable response we get when we achieve something. Allie is just in her infancy RDIwise, not ready for the whole shebange yet. I'll study on it and see if I want to keep the yet or not.

I'll make a deal with you, in 7 years, when I don't have to work with this guy anymore, we can get together and mess him up bad!

Kristen (ColeysMom)

05-10-2009, 12:13 PM

DEAL! I think we should bring Lauren too though...she can cheer us on! :D

And Happy Mothers day!

Ok, I still think it doesn't connect all the dots.

I think what it says is: You complete moron, I know ABA has merits, I can see that it isn't producing desired results, I know you can too, why can't you admit that? RDI is a viable option to consider, what is wrong with you you hardheaded jacka$$...

But it doesn't say: Can you get with me on this or do I have to organize that gang we talked about earlier?

I think it would be ok to directly ask the question:

Our consultant has offered to share some techniques that could help engage Allie at school. Would you be willing to give these a try?

I don't really like the wording at all...but I think it makes my point.

And you know what too...you never say that you are seeing some good things at home...they might be small but it DOES appear to be moving you in the right direction, right? Which I think even dataman would have to admit is more progress than his efforts are producing....

OK, 'nough of this for today...enjoy it...talk to ya tomorrow...

Aspigander

05-10-2009, 08:14 PM

DEAL! I think we should bring Lauren too though...she can cheer us on!
I even have that big stick you talked about earlier!

(Drat! I wanted to take a picture of my cane, pointed up ready to give Dataman a cane tip enema, but my camera battery is dead and the charger at my parents' house. Crap!)

Okay, I couldn't resist. I'm not one to make a habit of doing this (well actually I never have), but I've just figured out how to email a picture to myself from my cell phone so I could get it on my computer. So I took a picture of my cane on my cell, aimed upwards to give Dataman a little poke in the rump. Actually, I think I'm holding it a bit more vertically than would actually be effective for my intended target, but here we go with the cane tip enema, prepared especially for Dataman!

http://i42.*******.com/2lw9ok8.jpg

Aspigander

05-10-2009, 09:07 PM

Pegs, I'm going to take some liberty here and make some edits to your proposed email. Feel free to take it or leave it. I'm posting it as you posted it and after that I am going to post how I might word it. Wording in your original that I will change will be made red, and the changes that occur in my wording will be blue. Well actually you won't want to send my edit as is -- you'll still want to edit some of my notes out, as well as the codes for the colors, but I just did that to show how I might word things a bit differently. I'm not saying you worded it wrong, just some of the wording might be more effective reworded, and I have suggested the omission of a sentence. And added a couple. Again, feel free to take it or leave it. :)

Thank you for sharing research sources on ABA. I am aware that it has been the subject of voluminous studies and by and large has been found to be effective with many children. The data you have collected on Allie's behavior would seem to indicate that it has not yet been effective for her. Dr. Y stated that you have been through the book twice with her and still are not achieving any substantial gains. (I'm going to add something here)
I do not want to get into a debate over scientifically proven methodology. Studies are in progress on RDI and are scheduled to be published in August. My primary focus is to develop strategies and methods that are appropriate for Allison and will advance her development. I do not believe abandoning ABA is the answer, but believe changes should be made in instructional approach and methods of engaging her in activities. I suggested RDI because it is a program based in research on how the typical child develops and thought we might borrow some common sense ideas from it, to work on repairing some of the neural underconnectivity that is internally driving some of her undesirable behaviors. (Going to add a sentence here)

Thank you for sharing research sources on ABA. I am aware that it has been the subject of voluminous studies and by and large has been found to be effective with many children. My concern is that the data you have collected on Allie's behavior would seem to indicate that it has not been effective for her. Dr. Y stated that you have been through the book twice with her and still are not achieving any substantial gains. Having worked as an educator myself, it has been my experience that if something is proving ineffective for a specific student, it would be in that student's best interest, and waste less time for me, if I change tactics and find something effective for that student.
I would get rid of the whole sentence about debating scientific methodology. Dataman will likely read that as an admission of defeat, which I'm assuming you don't want to do. Studies are in progress on RDI and are scheduled to be published in August. My primary focus is to develop strategies and methods that are effective (remember, they think they're already satisfying the A in FAPE, so using the work appropriate might not work too well) for Allison and will advance her development. I do not mean to imply that we should abandon ABA altogether, but believe changes should be made in instructional approach and methods of engaging her in activities. I mentioned RDI because it is a program based in research on how the typical child develops and thought we might borrow some common sense ideas from it, to work on repairing some of the neural underconnectivity that is internally driving some of her undesirable behaviors. I also mentioned RDI because we have begun to implement it in the home and have seen some improvement in Allie's home behavior.

Kristen (ColeysMom)

05-10-2009, 09:20 PM

Just my $0.02 (which could be over priced)...I like a lot of what Lauren has proposed. I like the sentence she removed, but have to agree with her point. As much as we want to insult him, you shouldn't, even if it is between the lines...bummer! Also in her edit...I don't like the word 'seem'...because it implies that the data could be misrepresenting reality...

peglem

05-10-2009, 10:03 PM

But, I feel that both his email and the teacher's both were starting down the path of scientific debate and I want them to know that I will not engage in that debate because I feel it will not contribute to Allie's success. I can find all kinds of arguements against their stance- but its immaterial because the bottom line is...its not working for my child. I didn't write that line to be insulting and it didn't occur to me that it might be construed as such.

I do like the word effective better, even though I put appropriate on purpose to relate to FAPE. I think effective works better though.

The reason I didn't mention RDI working for Allie at home is because I think they'll try to corner us on it (data and proof and all that) and we are in the very beginning stages and seeing only very small improvements. Frankly there are days we see alot of resistance still, but we're working through it. But, I think they'll really ponce on any little thing.

Kristen (ColeysMom)

05-11-2009, 10:27 AM

Ok, that makes sense...'insult' may have been a bad choice of words on my part too...maybe 'dig' would have been better...but I see your point and think it makes sense...how about rewording it a bit so it doesn't come across like..."you rigid a$$, I'm not going to get into a pointless argument with you..."

Wait...I think maybe moving the sentence might do it (I'm going to build off of Lauren's version for no particular reason):

Thank you for sharing research sources on ABA. I am aware that it has been the subject of voluminous studies and by and large has been found to be effective with many children. I do not want to get into a debate over scientifically proven methodology. My concern is that the data you have collected on Allie's behavior indicates that it has not been effective for her. Furthermore, Dr. Y stated that you have been through the book twice with her and still are not achieving any substantial gains.

Having worked as an educator myself, it has been my experience that if something is proving ineffective for a specific student, it would be in that student's best interest, and waste less time for me, if I change tactics and find something more effective for that student.

My primary focus is to develop strategies and methods that are effective for Allison and will advance her development. I do not mean to imply that we should abandon ABA altogether, but believe changes could be made in instructional approach and methods to engage her in activities. (there is something gramatically incorrect about the 2nd part of this sentence that I can't figure out.)

I mentioned RDI because it is a program based in research on how the typical child develops and thought we might borrow some common sense ideas from it, to work on repairing some of the neural underconnectivity that is internally driving some of her undesirable behaviors.

Studies are currently in progress for RDI and are scheduled to be published in August. (I'm not sure this is necessary now, afterall you don't want to discuss studies right?)

I think this statement can be reworded a little to accomplish the same point:

I mentioned RDI because it is a program based in research on how the typical child develops

That's not exactly right is it? Isn't it based on scientifically (proven and)accepted developmental processes?...I don't know how to word it...but isn't it more about going back to foundations and working at the root of the deficit? And that 'root' being the unarguable fact that behavioralists and neurologists and developmental experts all work from? I think if somehow this sentence can be reworded it eliminates the need to even bring up anything about peer reviewed studies....thoughts?

Alright, about this:
I also mentioned RDI because we have begun to implement it in the home and have seen some improvement in Allie's home behavior.

Maybe it can be reworded, not sure how. But I think the point is that you ARE seeing 'something' that has prompted your desire to bring it into the school as well. If you didn't think it would be helpful, you wouldn't mention it, or you would have raised something different, right? I think this is valid, and important...because there could be something else, something that you made up that is working (better) at home, and that too would be valid, ya know?

As far as I know (which isn't a whole lot) ABA is the only method that 'tracks' things, so I wouldn't be too afraid of that...there are other things like floortime and what else, that is utilized that relies solely on impressions, right?

As an example, Coley's motivation at school is problematic at times...the whole 'defiance' thing right. Well the teacher figured out all on her own that presenting things, no matter what, as a challenge generally gets him to participate. I'm fairly certain that there are no peer review studies that support this approach...but it works for Coley...so they use it...and now so do we.

So I think the important thing is that what you are doing seems to be more effective than what they are doing, and that's it....

Ok, Coley's home today (swine flu? allergies? who knows)...I gotta fly...

Aspigander

05-11-2009, 05:26 PM

I do not mean to imply that we should abandon ABA altogether, but believe changes could be made in instructional approach and methods to engage her in activities. (there is something gramatically incorrect about the 2nd part of this sentence that I can't figure out.)

How is this?

I do not mean to imply that we should abandon ABA altogether, but believe changes could be made in the instructional approach and methods (I'd omit this part and just leave it at instructional approach -- approach and methods may be redundant) to engage her in activities.

I like where Kristen moved the debate sentence. You are right -- you do want to nip any debate in the bud, but my concern is it may come across differently to Dataman and Analgirl. Not an insult per se, but they may read it as: "I can't back my ideas up with science so I don't want to debate it but still want to nitpick". I do like where Kristen placed it. Maybe wording along these lines would help:

Original
I do not want to get into a debate over scientifically proven methodology.

How I might word it:
I will not debate the scientific merits, or lack thereof, of any proposed methodology, as doing so will not contribute to Allie's success, but rather serve as a waste of our time and ultimately hers.

peglem

05-11-2009, 09:15 PM

Thanks, you guys. I did send a response to Dataman today-he hasn't answered yet. But there was a mix up on the part of our RDI conultant (she got the meeting date mixed up) which has resulted in us being able to meet with her this Wednesday instead of next, so we'll be able to get her help from our side anyway, before they IEP meeting. This is such a relief to me!

I've been so stressed, and suppressing it. Yesterday, Allie had a tough day (really bad), especially in the morning. I crashed into weepy mode-not a great way to spend Mother's Day. I was okay by evening, though-Allie improved (okay, I gave her valium :() and my other kids made me feel better.

Aspigander

05-11-2009, 09:23 PM

Sorry to hear yesterday was rough. Hope today was better.

Just out of curiosity, is Allie good at taking meds (like the valium) when you ask her to?

peglem

05-11-2009, 09:44 PM

Taking meds is one of her best things! We struggled with this for years until we somehow got her to understand that the doctor thought the medicine would make her feel better. She actively worked on overcoming the anxiety. She was on liquid meds back then. And you could see her giving her all to cooperate, then at the last minute jerking away...She finally mastered taking meds from a syringe, then we moved to pills, washed down with a syringe full of water. She's able to down even large pills this way. Sometimes she gets a little resistent, but I just remind her that she's good at it and she cooperates right away.

milivica

05-11-2009, 09:59 PM

I can understand and see you're really stressed, I hope after weepy mode you felt some relief. I know you see this great potential for Allie, and school isn't getting it at all, and they're going to plan all this ineffective stuff that could be such productive time for her. But as you make more progress at home and they notice a difference at school, you'll be able to get school to be more open - especially with the guidance of the consultant not only in RDI but in working with schools. As I realized just how far off school was, a panic ensued where I felt I had to hurry up and get them to quit wasting Vincent's time, it was down right painful. You remember how bad that school was, and look at Vince now. That was a culmination of the RDI Consultant and the program and time (which always feels precious and wasted when it comes to our children).

As crazy as this sounds, in some ways, I felt less conflicted about school and it's decisions when I didn't know what to do either. Dunno if that makes sense, but I guess prior to RDI I didn't feel like Vince was missing out on development every moment school didn't do RDI with him....tick tick tick....Vincent's time ticking away.

You've begun this great journey, you are going to get further and further down the road with Allie. These are your first steps with school, unfortunately you have Dataman and Analgirl blocking the journey just like I had Adolf and a whole cast of administrative drones, but like Vince as Allie has success at home they will have to walk with her, know what I mean? You'll see, you're doing it, you'll go further and further with Allie cause you're going to get the guidance you never had before. It's frustrating, cause you've already waited so long. But Peg you're doing it and you'll continue to do it. You will get school to 'hear' you, I know you will, but yes it takes time.

Worse case scenario, plant a whole bunch or orange trees in their front yard while they're asleep (little Phoenix humor, lol).

peglem

05-11-2009, 10:22 PM

Partly I was stressed because on top of all this, we were having a LOT of resistance from Allie when we tried to engage her at home. All weekend, I was trying to get her to do things with me(well, more than that, since Thursday) and getting big fat resistance-even on the film for the consultant+Rick didn't even get his stuff done with her-mainly because her resistence is even greater with him.
So, today, I got the RDI and Education book in the mail and started reading. There was this one part that talked about taking away things that seem to be "security items" for them (That's how they are described in the book, I think they are obsessions) so you can get them to focus on other things.
(((((((((((( Doioioing!))))))))))))) When she came home from school, the monitor to the computer was unplugged. She didn't like that much (AT ALL), but calmed down with a snack. I told her she could use the computer after we built a tent (coregulating movements, carrying chairs and the blanket together), which is what I'd been trying to get her to do all weekend-only got mucho meltdowns. But today, she cooperated with just a little resistence at the beginning. (she wanted to lead me with carrying the chair, instead of following my lead) Anyway, the whole thing went really well. When we finished, the look on her face was priceless! She knew WE had really done something! I got her to come inside with me once...I'm leaving it up to see if I can get her to play in it with me later (after she gets some computer time ;))
I feel so good, having finally succeeded here...BIG SCORE! The only thing is I didn't film it, because my cameraman had dozed off and I didn't really expect it to be successful. But, we can do it again (I think she'll want to) tomorrow and get it on film.

milivica

05-11-2009, 10:48 PM

Oh NICE! I love how you describe the WE look she gave you.

Remember when Vince and I started coregulatory stuff, it was so awkward at first, but once he felt the 'we', it was so wonderful. It took me a while to feel the 'we' before I could help him feel it, remember?

I know RDI is frustrating at first, cause the theory is so clear and makes so much sense, then you go to 'do' it and crash. At least it was like that for us. You're doing it, and you're going to continue to make progress, and guide Allie to more and more. I'm so glad you had that great 'we' moment, it'll help you stay fueled.

You and your girl feeling 'we' together is just the best!

And no, you can't do RDI with items of obsession cause the item becomes the focus, not the sharing or 'we'. Same with activities that are their static thing, like Vince blowing cattails could not be turned into anything we shared...he had it all 'blueprinted' out. But now we could!
Lisa

Kristen (ColeysMom)

05-12-2009, 09:46 AM

Pegs, I'm still staggering from the roller-coaster ride you just sent me on! Hope you've got your footing by now!

Sorry you had such a tough weekend & mother's day!!!! Sounds like the 'we' time made up for alllllll that! WTG!

Sorry if we added to your stress over the stupid note to dataman...I was getting a little anxious myself with the editing....feeling like it was getting to be too much...I'm sure it felt worse to you during all the other stuff...sorry!

Tomorrow's the day? OMG! That came up fast...

I'll start praying now that he gets hit by a bus, I mean hit by a bolt of humanity...

[[hugs]]

peglem

05-12-2009, 10:05 AM

Tomorrow I meet with our consultant and supernanny. SN is ABA specialist, but she's open minded enough to see the merit in RDI as well. IEP is Monday.

Kristen (ColeysMom)

05-12-2009, 10:10 AM

Oh! Can Supernanny make the meeting? She's met them before, right?

Aspigander

05-12-2009, 01:21 PM

Tomorrow I meet with our consultant and supernanny. SN is ABA specialist, but she's open minded enough to see the merit in RDI as well. IEP is Monday.

Peg, I keep hearing reference to Supernanny...may I inquire about that? I'm thinking either she's someone widely known about, who goes by Supernanny, OR she's someone you've given that alias to, like Dataman and Analgirl.

I second Kristen's question of whether or not she can go to the IEP. If she's an ABA specialist, and knows about all that wonderful peer reviewed stuff, then maybe she's just the person you need to have help you get across to the school that their particular approach is not appropriate (effective) for Allie. You know, because, as an ABA specialist, she can speak their language.

peglem

05-12-2009, 01:35 PM

Yes, Supernanny is the name I've given to the behavior specialist who comes to our home. We got her when we were looking for RDI services that would be covered under our mental healthcare insurance. She knew a little about RDI, but no way could help us implement that program, but attends our RDI meetings, and has come to have a better understanding and acceptance of RDI. I don't know if she can attend the IEP meeting.
Last year, we wanted her to observe Allie at school, just because we really didn't know what they were doing there and were kinda getting stonewalled about it all. They finally let her observe after months of resistance. But observance at Allie's school consists of standing in the hallway and peering through a ten inch square window. You can't really tell what they're doing or how they're communicating. She did comment on Dataman's arrogance, though. Apparently, he observed her observing...
All that to make the point that the school just doesn't give much respect or credence to outsiders (including parents). They put the "contained" in Self-Contained program.

Kristen (ColeysMom)

05-12-2009, 01:50 PM

Man, I just hate these people more by the day. I don't know why but my memory of her observation wasn't that ridiculous.

What the F is wrong with these people? I mean it REALLY seems like they haven't the slightest interest in helping Allie. Are they like this with all kids? I mean is anyone thriving in this type of place? GOD!

Well, Lauren, can you change that tip on your 'big stick'...I'm thinking something spiky might be better than the tip in your pic...maybe somehting that we could put into hot coals...http://smileys.smileycentral.com/cat/4/4_2_200v.gif

Aspigander

05-12-2009, 02:25 PM

Well, Lauren, can you change that tip on your 'big stick'...I'm thinking something spiky might be better than the tip in your pic...maybe somehting that we could put into hot coals...http://smileys.smileycentral.com/cat/4/4_2_200v.gif

Wow, I thought I'd seen any type of white cane tip there could be, and didn't know of anything spiky, but with a little googling, I think I found something that should get the point (http://www.rehabmart.com/product/1314.htm) across.

Kristen (ColeysMom)

05-12-2009, 02:29 PM

Yup, that oughta work. :D I can think of a couple places I'd like to point it too...

peglem

05-12-2009, 02:30 PM

Oh, you guys are so funny. I'm feeling pretty optimistic about things now...its going to be okay.

Kristen (ColeysMom)

05-12-2009, 02:35 PM

Ok, but just to be on the safe side...we'll wait outside, peering (no pun intended) in through that little 10" window.

Wait if we can't hear, we need a signal...

If we see you do this

http://smileys.smileycentral.com/cat/10/10_2_3.gif

we'll come a stormin in! :D

peglem

05-12-2009, 07:25 PM

Alrighty, here's dataman's response to that email that we agonized over:

You are correct, we have been through the book several times. Currently, we are trying to identify the function and provide a viable alternative to SIB for Allie. I am completely open to incorporating commons sense strategies that you have found to be effective. Can you please tell me which specific methods or procedures you would like to see us incorporate?

Thank you for help.

But don't put your cane away, Lauren, until we see how this plays out.

Aspigander

05-12-2009, 07:35 PM

Oh, trust me, cane's ready. :)

I want to start cheering, but why do I have an idea that response smells like a 'too good to be true' scenario?

Kristen (ColeysMom)

05-12-2009, 07:46 PM

Yep! I smell a rat! And now I understand why Peg's has such a hard time trusting these bafoons!

And I just want to point out a little piece of information that he may have provided here:

How many times (exactly) has Allie been through this book? Was it 2 or more...

and, ehem, is it me, or are these people complete knuckle-heads?

How many times do they plan to go over the same material using the same approaches and fail...

Wait, what's the definition of insanity again...so maybe we should cut them some slack...they aren't dumb-a$$es they are mentally ill!

Peg's we shouldn't bring the cane, we should bring a straight-jacket! Now it's all making sense...

NOT!

peglem

05-12-2009, 07:51 PM

Its the ABA book on behavior modification. This guy is responsible for her behavior plan, not the instruction. And, actually, I thought his reply was rather civilized. Now that he asked in writing, I don't see how he can refuse my input.

Kristen (ColeysMom)

05-12-2009, 07:54 PM

So he just tells everyone else to keep doing stuff that isn't working?

Oh, and if it doesn't work and you finish the plan, just do it again, and oh yeah, another time too...and people listen to this without any sort of balking?

THe whole place is insane!

Aspigander

05-12-2009, 08:34 PM

What bothers me about that email, is that they've been trotting out the same old tired dog for years and years and NOW he's completely open to common sense strategies? Gee, that took a while, didn't it? Makes me wonder if he's going to find your suggestions to be in line with common sense...

and people listen to this without any sort of balking?

Good question! You know, if someone told me to do something, and it didn't work, and they told me to do it again, and it didn't work, and again, and it didn't work, pretty soon I would think I'd be saying something like: "Ummmm...but, this isn't working."

peglem

05-12-2009, 09:20 PM

You guys are right. But, I'm gonna move forward with a positive attitude and just get as much as I can....the door is open, at least a crack, which is much better than it was a few days ago. See? Celebrate progress!

I think maybe my throwing RDI at them when they didn't have a clue was too much. They didn't understand that I wasn't trying to overthrow the government, so they reacted in the way they have been trained to do. And I think it came from their training, simply because both the teacher and dataman gave me the same response, almost verbatim. So, I guess I learned something! Final analysis: I don't care if they treat me like crap, as long as I get what I need for Allie. I've dealt with doctors who were like that- but, I needed their expertise, so I don't care. (The ones w/o expertise, I can just walk away from, not worth the battle). Right now, I do need these people...the more we work with Allie at home, the better things will get, then, hopefully they'll be even more interested in what we're doing.

peglem

05-12-2009, 11:00 PM

milivica

05-12-2009, 11:48 PM

Peg, omg that is a absolutely fantastic letter!

You are correct, we have been through the book several times. Currently, we are trying to identify the function and provide a viable alternative to SIB for Allie. I am completely open to incorporating commons sense strategies that you have found to be effective. Can you please tell me which specific methods or procedures you would like to see us incorporate?

Thank you for help.

There's your opening! I can't believe he said you were right, or that they've been through the book several times. I never ever ever eeeeeeeever heard that kind of admission or acknowledgment from anyone working with Vince. And he says he is completely open to incorporating common sense strategies...NICE! That is the best letter I could imagine you getting, wonderful! You have a real opening now, use your nt superpowers and your consultant, explain what works so far and what it will lead to, perhaps without actually saying "RDI" so your suggestions can't be labeled an unproven method, and labeled common sense strategy instead.

I'm like on a 'high' tonight. I noticed twin boys playing at the park across the street while their mother nursed their little sister. I walked over seeing the very active twin boys, and mentioned my son who is 13 is excellent with young boys, they follow him around like he's a god. If she needed a mother's helper over the summer, he is very eager to start doing that and is very qualified for it, has boundless energy for and love of little kids...I joked that his adhd is finally going to pay off for him. She was interested and asked for my number, explained she was visiting out here but would be here for a whole month in the summer and would love the help. I was surprised, like I guess I half expected her to think I was pushy and politely blow me of nt style. So we talked a while, and she mentioned that when her twins who are now 4, were 18 months, they were diagnosed with autism. Now honestly, I can spot an asd a mile a way and I did not see anything that said autism, and told her so. I then disclosed that Vince had autism...which I had planned to tell her after she met him if she called over the summer. I was shocked, that her kids were ever on the spectrum and told her so, and explained cause of my son I can always spot asd...ya know what she said...she said they checked into the only thing that made sense to her, it was called RDI.

Did I freak? Yes I freaked!!! I was like "OMG no way, that's what we did" and we talked and talked, it was so great, I feel like this will become a common sense way of helping children with autism.

The part of me that in the past would have ached to see her kids so free of autism, instead felt not only happy for her without sadness for my son, but proud of my son cause he is part of the generation that paved the way for this new era of how we think about autism, and what to do about it.

roadracer

05-13-2009, 12:12 AM

mili, do you play the lottery, if you don't you should start because the odds of meeting that women, who just happen to have autistic children, who are using RDI, who were playing at the park across the street..... what are the odds, hope you become good friends (and I could use a couple million when you win :D)

peglem

05-13-2009, 12:27 AM

milivica

05-13-2009, 12:28 AM

And she was from another state just visiting too!

roadracer

05-13-2009, 12:36 AM

And she was from another state just visiting too!

o now you tell us the bad news, so she lives to far away? If you got her phone number tell her about the board!!!

milivica

05-13-2009, 02:22 AM

She actually wouldn't need the board, they don't have autism anymore.

We wanted to exchange numbers but had no pen/paper. I live across the street, so told her not to hesitate to stop by when she's out here for a month in the summer...our license plates say Y AUTISM so the house is easy to remember with that car in front of it.

When I met her first, one of her boys came up to me, couldn't wait to show me this cartridge he had for a nintendo or playstation or whatnot. He said in all his four year old cuteness, "This is my double-o-seven" and there was a pic of the 007 guy. He was so cute, staring at me waiting for me to get excited about his cartridge. I said, "Wow! You have a double-o-seven...I don't even have that!" and you could see him march off with pride. His mom said it was his uncles, he's not allowed to play it (adult type game with violence) so he carries around the cartridge. Flexible thinking! I mean, they were just a couple of four year olds, chattering to share their thoughts, not to share facts. They were soooo calm, the mother oozed a calm laid back persona.

Again, just nothing about them stood out as autism or even as a little 'off'.

I was about to leave when one of the boys said he was feeling tired and ready to go home. The other boy totally went along with it even though he wanted to stay longer...pretty amazing for any four year old, ya know? So we walked a little together all of us, and one of the boys wanted to be carried. The mom obliged though she was pushing the baby in a stroller. Of course, the other boy wanted up too. The mom gave me 'the mom look' and said, "This is what happens when ya have twins" then put the first boy down and offered that they each take a handle on the stroller. They didn't want that, but they totally went along with it and you could see they were fine...they instantly adjusted - no suppression. No hanging on to wanting to be picked up...which would not be unusual for a four year old anyhow. One of them gave one stomp, but that was IT.

Anyhow, just seeing them be able to enjoy themselves, without being detoured by meltdowns and other things out of their control. Not that nt four year olds don't have meltdowns, but it can't compare to an asd meltdown especially when they come every day all day over very minor adjustments they just cannot make. It hurts as a mother, to want so badly to stop your child from the anguish they feel over (for instance) the wind blowing the 'wrong' way...omg...I used to have to take Vince to the movies, cause I just didn't know what else to do, he'd be so gutted when the wind was blowing 'the wrong way'. I mean, that and a million zillion other things I couldn't make right for him. Due to autism or not, his upset was absolutely real, I'm just so delighted to be able to witness all the anguish these kids and the mom will not have to go through.

Funny thing also, the mom having gone through RDI, sort of assumes or takes for granted autism is something you work through for a couple years and poof it's gone.

How cool is that?

The grief I felt over my son's autism lasted longer than her sons' autism. I remember his dx, "No Cure" was the constant thing drummed through my head...I think everyone here had that experience. So uplifting to see a mom that didn't go through that, strolling along with her kids.

Sorry about the thread hijack Peg!!!!

My original point was that was an excellent letter by Dataman, I can't imagine a better one. It's loaded full of potential, an open door instead of a shut one. I'm very very happy about it, you must be working well with them or you'd never have gotten a letter like that. And not to be mean or whatnot, but if you ever had to 'prove' what they did has not been effective, has not worked, has been repetitive yet ineffective...you now have it in writing where he says it's true you've been through the book several times, or how ever that first sentence was worded. I'd feel far more comfortable with someone that says, "You're right, what we've done isn't working" that someone who has all the education in the world and can't see your child above studies or numbers or 'data' or whatnot. Pool Analgirl, who will she idolize now, lol.

Good Job Peg,
Lisa

peglem

05-13-2009, 02:39 AM

Actually, it was their own strategy that backfired on them. They only shared that info about not knowing what to do in order to convince us to go med. (Frustrating because we have been trying to find a med that works for Allie for years and that's well documented in the school's files.) Then pulling the "proven methodology" crap, I mean, their OWN DATA, not some study of other kids, shows that its not working. What else could he say (being the dataman that he is)? Anyway, once I realised that when I said RDI, they heard "dance naked with a pineapple on your head", I backed off of RDI, figuring I'll just give them RDI inspired suggestions and they will not have to know its RDI.

Another thing I'm pondering lately, Allie lost development soo early in her life that she is still responding as an infant, mostly- crying out when something's wrong and getting really frustrated when her stupid caregiver can't read her mind, or doesn't give her what she wants when she says so.

Kristen (ColeysMom)

05-13-2009, 09:05 AM

Meeting today with supernanny & the consultant right?

How are you going to respond to dataman? I promise I won't pick at it!

I think you are right too about labeling things as an RDI approach...just tell them the things that are showing promise and don't say anything more...good idea!

I have my fingers crossed...I am positive, just not toooooo optomisitc...a reasonable person would react in a logical way to all of this, but they've proven not to be that, so I'm in a wait and see stance...but I do have everything crossed and I'm praying (as I have been) for Allie's miracle to show up!

Crossing everything that the cape crusaders come up with something good to offer as suggestions...I mean I know they will, but something that knocks schools socks off (easily)!

peglem

05-13-2009, 11:10 AM

I think you guys gave me some very useful suggestions on the last response, so don't worry about picking. I only use thr suggestion that I like anyway. I'm not going to respond until after the meeting. I should have a better idea by then what to do.

Kristen (ColeysMom)

05-13-2009, 11:24 AM

Ahhh, yes, the poker!

milivica

05-13-2009, 04:30 PM

Anyway, once I realised that when I said RDI, they heard "dance naked with a pineapple on your head", I backed off of RDI, figuring I'll just give them RDI inspired suggestions and they will not have to know its RDI.

Yes, that's the way to do it.

Back before Vincent's old school and I were still 'friends', the assoc prin, when I first suggested RDI, suggested to me I not say "RDI" to Adolf, or she'd feel like 'No, more to learn, I already have too much to learn' and be more resistant. Exactly like you're saying, RDI inspired suggestions without the actual label of a whole new program to learn.

Another thing I'm pondering lately, Allie lost development soo early in her life that she is still responding as an infant, mostly- crying out when something's wrong and getting really frustrated when her stupid caregiver can't read her mind, or doesn't give her what she wants when she says so.
Poor Allie surrounded by such incompetence, lol. Not just the development, but that networking, that interconnectivity that didn't grow so the parts of her brain that are age level, can communicate with the parts of her brain that are infant-like. You're going to see big changes with every little connection.

peglem

05-13-2009, 09:06 PM

Alright...worse than I thought- the RDI consultant and SN and Hub and I all met. We decided that things have been messed up for so long and we have so little idea what instructional methods have been tried at school...all we really know is that it has been unsuccessful and thus inappropriate. So, an educational advocate (that we can't afford:rolleyes:) was recommended. I called and made an appointment for tomorrow morning. On Monday, we will not be agreeing to anything, until we can get proper guidance from our advocate. I think this is the right move....

Mili, did you buy that lottery ticket?

milivica

05-13-2009, 09:17 PM

I'm glad you'll have an advocate! I was not able to find one that could comprehend the difference between what I wanted for my son, and teaching him to be a compliant shopping cart pusher. Don't get me wrong, if pushing carts was something he wanted and enjoyed, I'd be all for it.

Peg, if I could, I would pay for your RDI and advocate and everything Allie deserves. I really would. I didn't buy a lotto ticket. Give me what numbers to play, and I will, and we'll split it. Too bad ya can't play letter lotto...I'd play 'zombie'.

Kristen (ColeysMom)

05-14-2009, 09:23 AM

Pegs, this isn't bad...you just have a better idea of what needs to be done, and yup it's a lot!

This is good, this is a turning point...deep breath and storm forward!

Let us know how the appointment goes today.

GOOD LUCK!

Sending all sorts of positive vibes your way!!!
KJ

peglem

05-18-2009, 08:41 PM

Wow....3 hour meeting. It helped that Dataman was not there. Just the teacher, the elementary district liason and the HS district Liason. Not too bad, but we're not done yet because the SLP and the OT were not available for the meeting. Anyway, we sure had plenty to talk about anyway.

So had the Select pictures representing emotions (happy, sad ,ect.) and match emotion pictures to other students emotions in the classroom goal obliterated. Added this to replace it:

GOAL: Allison will interact with a peer to improve social skills by performing a variety of social patterns(giver/putter, turn taking, carrying large items together) while completing common tasks (setting a table, completing puzzles, playing a game, etc.)

Benchmark #1. Will interact with peers and staff by giving and receiving materials to complete a task or reach a goal together.

Benchmark #2. Will interact with peers and staff by taking turns to complete a task or reach a common goal.

Benchmark #3. will interact with peers and staff by coordinating movements in order to carry a large item

These will be implemented throughout the day, integrated into classroom activities.

We had to argue a bit over the emotion picture identification's effectiveness at actually increasing ability to interact (she showed us exactly that the ABA manual said to do it.) Anyway, when I suggested (without using the naughty RDI word) it might be more useful for her to actually practice patterns of interaction, where you have to pay attention to what your partner is doing in order to perform your role, they really listened...and I described these simple patterns and everybody was talking excitedly about it at the same time, like it was such a novel, exciting concept. The elementary school liason took copious notes (we referred to them to get it on the IEP). That was pretty cool.

We changed the "points to pictures of social situations when named" to pictures of verbs (maybe someday they can get her to put the nouns and verbs together!)...

The teacher wanted to teach letter sound to help Allie learn to spell words w/o a model. This would be okay, except she already knows all her letter sounds, so it was changed to learning word families (basically, rhyming, but using changing the beginning sound to make a different word)

The other thing is, we may not be dealing with the same boneheads next year. The HS district, for the 1st time ever, this fall will be opening up their own autism program (max 6 students). The HS liason wants the teacher to observe Allie in the classroom before they decide placement for sure, as she said it sounded like Allie would be a good fit for the program, except having a dedicated paraprofessional, so she's not sure yet if that program would meet her needs. I don't know what to hope for here, but not my decision anyway. Could be good in the new situation...could be worse as well. In any case Allie's teacher will not be in her classroom next year, she's moving to their brand new, state of the art ABA program (I think they'll be serving clients who are not students).

We do communication goals, probably on Wed. and ask the OT about a sensory program.

Enough already.

Aspigander

05-18-2009, 09:14 PM

Wow, seems like they may be opening up a little.

Okay, I have to ask...how to put this delicately...

What about the poop on butt issue?

peglem

05-18-2009, 09:54 PM

Wow, seems like they may be opening up a little.

Okay, I have to ask...how to put this delicately...

What about the poop on butt issue?

We left it alone, but trying to fgure out how to broach the subject w/ the SLP, re: declaratives. I just checked her comm. goals and all they have is ansering yes/no questions and asking for help. (don't see how they can really measure asking for help when needed since they won't know if she needs help unless she asks.) This will be very tricky, because your looking more at changing what the teacher does than what Allie does.....guess we could do something like: responds to indirect, declarative prompts... But don't know how much luck I'll have explaining why this is important...

Truthfully, I didn't really have a plan of action this morning, just a very general outline of what I wanted (I did know what I didn't want). I prayed a lot! and I credit Divine inspiration for the way this worked out.(so far) I mentioned it a bit today when we got to the communication goals, the teacher seemed like she didn't really know what i was getting at and the meeting was already waaaay too long. We just agreed to save it for the next meeting...which was okay, because I needed time to process what we'd done thus far.

Aspigander

05-18-2009, 10:00 PM

and asking for help. (don't see how they can really measure asking for help when needed since they won't know if she needs help unless she asks.)

You know, that's interesting. Yes, that would be hard to measure. I know for me, it's been hard to ask for help. I'd often just sit there trying to muddle through.

peglem

05-19-2009, 12:06 AM

When the HS rep was discussing next year's placement, she asked point blank how much progress Allie had made at her current school. There was several seconds of awkward silence as the school personnel looked with darting eyes at each other....not comfortable answering honestly, but not prepared with a diplomatic answer. Finally one of them said, "not very much". I sure enjoyed watching them squirm when they were put on the spot. :D That's not very nice of me, but there it is.

Kristen (ColeysMom)

05-19-2009, 09:28 AM

Wow Pegs this sounds good!

Do you know what the criteria for that program is...like is it supposed to be a 'different approach' for those kids not responding to the status quo, or is it supposed to be for kids who are doing ok, but with more 'attention' could tae off??? Or something else... Do you have any idea???

So another meeting tomorrow???!! WOW WOW!

Are you going to be able to connect with supernanny or the consultant (can we come up with a name for her?) before that meeting, or will they be able to attend?

Pegs, I gotta ask you something...I've realized through this discussion that my 'image' of Allie may not be very acurate...either that or the people at school are bigger arseholes than I care to imagine exists...either way I'd like to resolve this in my mind cuz it's driving me nuts...

What is Allie's receptive language level? My 'image' is that she is roughly on target receptively...expressively no...and that her behavior distorts or hampers her ability to demonstrate her, hmmmm what's the word...IQ (I hate that word)...her developmental/educational level...Am I off?

I'm wondering stuff like, how is her math actually, not what she demonstrates...can you talk to her and she listens & understands on a 14yo level?

I'm not exactly sure why this clarity is important...but I think I have this idea that Allie is hungry (maybe even starving) for knowledge and exposure...I'm thinking letter sounds? WHAT!? I'm wondering if breaking out Shakespare or calculus or something else way up there would peek her interest enough to behave...

I'm wondering if you can ask her why she has these outbursts. I understand she can't really say: "Well, mom they talk to me like I'm a dog" But could you tak to her about why you want to know this, how you want to change things at school to make it better for her (if that's what she wants), and see if you can give her some options or something to respond to? I know expressing her opinion is something you've been working on...what happens when you talk to her about school or activities or her interests????

But then I think...I just have this image...I could be WAY OFF! But I can't not say it, cuz it's really been banging around in my head a lot as we've been on this thread...

Nothing iritates me more than someone talking to me or treating me like I'm an idiot...and something about all these stories just grates on that very same nerve...

Ok...just had to get that out...

peglem

05-19-2009, 01:31 PM

;349790]Wow Pegs this sounds good!

Do you know what the criteria for that program is...like is it supposed to be a 'different approach' for those kids not responding to the status quo, or is it supposed to be for kids who are doing ok, but with more 'attention' could tae off??? Or something else... Do you have any idea???
Actually, I believe its because they are paying mucho $$ sending autistic kids to private schools, so they decided to make their own autism program to serve those kids instead. She said its a "modified TEACCH" approach. Which doesn't mean much because then it all depends on how modified it is, and how its modified...but, being as they are just starting up, I would hope that they'd be more open to ideas and suggestions.

So another meeting tomorrow???!! WOW WOW!

Are you going to be able to connect with supernanny or the consultant (can we come up with a name for her?) before that meeting, or will they be able to attend?
I think I'm gonna try to delay this meeting. For one thing, I need a break from all this crap. They wanted to get this done soon because the SLP is very pregs...due the 1st week of June. But, I think I'd like to wait and see about this other placement, and if that happens, hash out the communication stuff with the new speech therapist.

Pegs, I gotta ask you something...I've realized through this discussion that my 'image' of Allie may not be very acurate...either that or the people at school are bigger arseholes than I care to imagine exists...either way I'd like to resolve this in my mind cuz it's driving me nuts...

What is Allie's receptive language level? My 'image' is that she is roughly on target receptively...expressively no...and that her behavior distorts or hampers her ability to demonstrate her, hmmmm what's the word...IQ (I hate that word)...her developmental/educational level...Am I off?
The SLP's eval, done last May puts her at a 4yo level receptively. But, I think there is more than just her behavior interfering with expressive language (and receptive). 70% of communication is not oral, not words...and this I think is where they are not meeting her needs. The focus is on teaching her oral language. And most of what they are teaching is so they can communicate at her, not so that she can communicate inter-actively. She's missing 70% of what is communicated to her, and the remaining 30% they are only using a small slice of. But, they don't get that and think teaching rote eye contact is the solution....nobody is trying to get her to make observations, tell preferences or tell anything about her self or how she sees the world, except for point to a picture to tell us how you feel...but that is limited to the choices they give her to feel. So, she can't tell them, for instance, I'm bored to tears and sick and tired of doing all this stupid crap you're giving me to do....except by behavior, which always (at least temporarily) puts a halt to the stupid crap.

I'm wondering stuff like, how is her math actually, not what she demonstrates...can you talk to her and she listens & understands on a 14yo level?
When she left the other school, she had been doing addition and subtraction and was beginning multiplication...mostly skip counting. I'm not even sure where she is with her number sense...they've taken her way back to matching quantities one to ten. She really resists this activity and they assume its because its too hard for her. I don't know, but I see that she doesn't like numbers as much as she used to.....and yet,
Last night, on her comm device,she was telling me things to draw. She went to her number page and started constructing addition problems, using the format she used 3 years ago at her other school. For example 42+36= Then an open box for how many? (the device speaks "how many" when she hits the open box symbol). So, I wrote the problem she dictated on paper and demonstrated working the problem for her using stokes for tens and dots for ones. So llll.. + lll...... and then added them up by counting tens first and then "counting on" the ones. While I did this, she had her attention absolutely riveted to what I was doing. She dictated about 10 problems to me and watched intently each time I demonstrated finding the solution. All the problems were double digit + double digit' Not sure what to make of that exactly, except that she seemed to be understanding and internalizing what I was showing her.

I'm not exactly sure why this clarity is important...but I think I have this idea that Allie is hungry (maybe even starving) for knowledge and exposure...I'm thinking letter sounds? WHAT!? I'm wondering if breaking out Shakespare or calculus or something else way up there would peek her interest enough to behave...
Yes, I think she does want to learn. She likes working with letters and letter sounds and I think it would be a great jumping off point for moving toward phonetic spelling...but I don't think you have to make her demonstrate that she knows all her letter sounds before you can start using combinations of sounds to build words....Not what I did in Kinder. In fact, what I found was, working on building words greatly enhanced acquisition of letter sounds because it gave meaning and purpose to it....
As far as math...I think using and teaching it contextually might do the same thing. Simple, environmentally meaningful story problems... Again, they don't want to move on from counting until she demonstrates mastery, but I would say you can't do addition and subtraction without learning quantity at the same time, because its all about quantity, but now you have a context/purpose for using quantity.
I'm wondering if you can ask her why she has these outbursts. I understand she can't really say: "Well, mom they talk to me like I'm a dog" But could you tak to her about why you want to know this, how you want to change things at school to make it better for her (if that's what she wants), and see if you can give her some options or something to respond to? I know expressing her opinion is something you've been working on...what happens when you talk to her about school or activities or her interests????
She doesn't want to talk about her meltdowns. I believe she is embarrassed and ashamed of them. Its interesting though, that she gets upset when we talk about them in front of her at the psychiatrists office, but when I explain that the doctor needs to know what's happening so we can figure out a way to help her, she calms down and lets us talk about it. So, I think that clearly shows that she does want help with it. I don't think she has the expressive skills to explain, or even knows why this happens to her. I think she listens carefully to what we're saying, even though it seems as though she is preoccupied with other things.
I asked her teacher yesterday, if anybody had tried talking to Allison about things they are doing to help with her behavior...I don't remember what she said, but it was nonresponsive and the group sort of moved on without exploring that.
I'm going to try to come up with a way to do this...just need pondering time.

What they have come up with at school (which is good, but 2 1/2 years was way too long to figure it out) is giving her a way to ask for a break, so now she has the power to stop any activity, temporarily. It seems to be helping.

But then I think...I just have this image...I could be WAY OFF! But I can't not say it, cuz it's really been banging around in my head a lot as we've been on this thread...

Nothing iritates me more than someone talking to me or treating me like I'm an idiot...and something about all these stories just grates on that very same nerve...

Ok...just had to get that out...
Feel better?

Kristen (ColeysMom)

05-19-2009, 01:56 PM

Well I sorta felt like I was overstepping a little...but I Allie answered my question...I think Allie told you something...

And here's something to scream through a megaphone directly into the ear of whomever is responsible for crafting her plan...

Just because she cannot demonstrate mastery, doesn't mean she doesn't have it!

MORONS!

So now I'm even madder at them...in the end I was hoping that their behavior was wacked and not my understanding of Allie...but my blood is boiling again...where the heck did they get their credentials? Did it come with the teachers planner they picked up at staples? WTF! :mad:

Well I say you go a head and get her math supplies, and start reading her books on her level...there are so many reading games (I'm sure you have some) I'd just march forward and ignore these dimwits!

OMG! I'm numb right now!

Gonna go add to that quote I just types up...Audrey interupted me before...

peglem

05-19-2009, 02:37 PM

Calm down, Kristen. You're angrier than I am! I guess, what I'm seeing, is that as we progress Allie's development here at home...she's going to improve and since actual development generalizes to all areas of life, she'll get better at school, too. It would be nice to have school help and collaboration, but school is not going to prevent us from working on that development. So, we'll just do the best we can. Now, at least her parents understand what she needs, and that's miles ahead of where we were last year at this time.

Allie's previous school was great about moving on, realizing that a demonstration of mastery doesn't necessarily mean non-mastery and that exposure to new concepts and ideas is a good thing, even if full comprehension is not evident. That was good for her, and I'm glad you pointed that out, because I've been trying to think of why they were so much more successful with her than this school and I think that's it, largely. They were also very, very social. Every morning the whole school got together to sing, dance, tell jokes, share...party. What a way to start the day!

Nikabee

05-19-2009, 02:41 PM

but I don't think you have to make her demonstrate that she knows all her letter sounds before you can start using combinations of sounds to build words....

I agree. In fact, part of the problem with only learning letter sounds first (out of context) is that not all letters follow 'the rules' when you use them in words. For a concrete-thinker, that can cause a lot of difficulties.

Aspigander

05-19-2009, 02:54 PM

Its interesting though, that she gets upset when we talk about them in front of her at the psychiatrists office, but when I explain that the doctor needs to know what's happening so we can figure out a way to help her, she calms down and lets us talk about it. So, I think that clearly shows that she does want help with it.

You know what that (and your story about the math thing you talked about earlier in that post) also clearly shows? I don't know why the school isn't getting this. Allie is MORE INTELLIGENT THAN A ROCK!!!!

You know, if the district decides to place Allie in their new class, I really hope it's better for her. I really hope she'll be treated like a human being with a disability that needs to be assisted, instead of a rock.

You know, I wonder if her double digit + double digit thing was her way of saying: "Hey, I'm tired of this stuff a 5 year old could do being crammed down my throat. It's not that I can't do it, it's that I'm BORED STIFF doing it and want them to give me a challenge."

Does she have one comm device for school and one for home and the home one doesn't get so damaged? Or is this just one of those times where her device is not out of order? I'm just curious about that. You might suggest to her that she go to the school with her comm device and do the double digit + double digit stuff there, right in front of the staff. Like when they try to get her to do the simple, less challenging stuff, maybe she could do what she did with you? They need a big slap upside the head with incontrovertible evidence that her head serves some purpose other than keeping her ears from rubbing together.

You know, that whole post that the above quote came from, got me thinking. You mentioned in the meltdown thread that one thing you do to try to help her is start singing familiar songs and have her sign in the blanks. I noticed that the songs you gave as examples...well...at 14 I'd have about died if asked to participate. lol Maybe she doesn't feel that way, but maybe try to teach her some songs that are, well, a bit less juvenile? You know, something that might provide learning opportunity, I guess.

I know you said you're not a fan of this song, but I'm thinking of The Wreck of the Edmund Fitzgerald here. Heck, that might get her interested in Great Lakes shipwrecks (it did for me for a while). But back to having her fill in blanks, I'm thinking one part of that song in particular might be good for this one. Give her a sign for each of the Great Lakes. Then something like this:

Lake (Huron) rolls, (Superior) sings
In the rooms of her ice-water mansion.
Old (Michigan) steams like a young man's dreams;
The islands and bays are for sportsmen.
And farther below Lake (Ontario)
Takes in what Lake (Erie) can send her,
And the iron boats go as the mariners all know
With the Gales of November remembered.

Or have her sign the numbers in that song:

With a load of iron ore (twenty-six) thousand tons more Than the Edmund Fitzgerald weighed empty.

At (Seven) P.M. a main hatchway caved in, he said
Fellas, it's been good t'know ya

The searches all say they'd have made Whitefish Bay
If they'd put (fifteen) more miles behind her.

The church bell chimed till it rang (twenty-nine) times
For each man on the Edmund Fitzgerald.

Okay, perhaps she's okay with the more elementary songs, so maybe I'm way off. I just get the sense Allie actually likes intellectual challenges, and like I said, that particular song might be a springboard for learning about shipwrecks (at least that particular shipwreck). Hearing the song for the first time and my dad telling me about the actual ship that went down made me want to learn anything I could about the Fitzgerald and other Great Lakes shipwrecks.

There are probably many more songs with similar opportunity, and I know you said you'd get sick of it getting wrecked, but since I listen to GL almost exclusively, it's of course a GL song that pops to mind. lol

peglem

05-19-2009, 03:00 PM

I agree. In fact, part of the problem with only learning letter sounds first (out of context) is that not all letters follow 'the rules' when you use them in words. For a concrete-thinker, that can cause a lot of difficulties.
Yeah, I used to sort of treat the letters like characters...explain their "behavior" under different circumstances. "T' sticks its tongue out at "H" whenever stands beside it.- stuff like that. Like anything else, learning is best when you have a chance to explore, experiment and play with it.

Kristen (ColeysMom)

05-19-2009, 03:57 PM

Pegs I think you have a good perspective, a great one actually! And I'm SO glad to hear motivation and optomism in your tone...I know this means you are doing the right things for her...you have infact found the Allie's 'grove' ... nothing makes a mom's heart sing louder than being able to help your child grow, right? This is the song I hear in your posts these days...it IS very different than last year!!!!!:D

But what I'm po'd about is that you have told them before that Allie's skill level is X, or Y with somehting, but then they come back with some comment that amounts to her not demonstrating it to them.

Course there are (at least) 2 points to this...kinda doesn't matter what they think as long as she gets it somewhere...but then there is the fact that she'll be getting all these negative experiences at school. It just doesn't sit well with me at all.

I think you should tell them that you've figured out that her outbursts are sometimes based in boredum. Even if it's not exactly the truth...at least it might get them to start challenging her and potentially even seeing her for the smart little girl that I KNOW she is!

I'm afraid that if they continue to treat her like a rock, even if she is a literary genius or something else at home...it won't amount to a hill of beans to them because she'll continue to react badly to the way they interact with her, does that make any sense?

I totally agree with Lauren on this...step it up, I have this strong feeling that you are going to see amazing things...and school does need a big wack up side the head. I just cannot believe their narrow-mindedness! These are the people who are supposed to be shaping our young minds????? That's unbelievable to me!

Lauren, keep that stick handy!

peglem

05-19-2009, 04:48 PM

Oh, my, Lauren, I somehow missed your post this morning, I'm glad Kristen agreed with you or I would never had known to go back and check.
You know, I wonder if her double digit + double digit thing was her way of saying: "Hey, I'm tired of this stuff a 5 year old could do being crammed down my throat. It's not that I can't do it, it's that I'm BORED STIFF doing it and want them to give me a challenge."

Does she have one comm device for school and one for home and the home one doesn't get so damaged? Or is this just one of those times where her device is not out of order? I'm just curious about that. You might suggest to her that she go to the school with her comm device and do the double digit + double digit stuff there, right in front of the staff. Like when they try to get her to do the simple, less challenging stuff, maybe she could do what she did with you? They need a big slap upside the head with incontrovertible evidence that her head serves some purpose other than keeping her ears from rubbing together.
I don't know why she went there to do the math, but I think if I had initiated that, she would have resisted. At school (I don't know for sure because I really cannot get a good sense of HOW they are working with her at school) I think if she went to the number page, they would probably redirect her to whatever page they want her to work with. Maybe I'm wrong...but even if she did go there, I think what they'd "see" is that she's stating problems, but is not solving them.
She has one comm device (purchased through her state med. insurance) that she takes back and forth, home to school, when its not broken.

You know, that whole post that the above quote came from, got me thinking. You mentioned in the meltdown thread that one thing you do to try to help her is start singing familiar songs and have her sign in the blanks. I noticed that the songs you gave as examples...well...at 14 I'd have about died if asked to participate. lol Maybe she doesn't feel that way, but maybe try to teach her some songs that are, well, a bit less juvenile? You know, something that might provide learning opportunity, I guess.

The important thing about those songs is the rhythm and repetition, and they are ones that outside of meltdown, Allie initiates with us. That patterning is important for regulating. Its kinda like your jumping, it works and she enjoys it AND as a former Kinder teacher (12 years there), I know these songs make you feel good, happy....you cannot sing or listen to them without having your spirits lifted. For about 10 years Allie has repeatedly played Raffi videos, some might even feel excessively, but still, I enjoy those videos. I sing with them and they provoke joy....I don't know why, there's just something about them that seems to mesh with some underlying mind/body rhythm. Allie does listen to and enjoy more sophisticated music as well, but when her soul is crying out for peace...those do the trick.

I know you said you're not a fan of this song, but I'm thinking of The Wreck of the Edmund Fitzgerald here.
I actually like that song, and its fun to sing with (even though, obviously, i don't know all the words), but I don't think its the kind of song I would still like after hearing it 200 times, consecutively.

Kristen (ColeysMom)

05-19-2009, 05:21 PM

Peg's I'm sure your gut feelings about who intitiates something is true...afterall that's the ruling force here at my house...if it's not Coley's idea...oh god!

So big hairy deal right...ask her what she wants to do, and I think it's a pretty good idea for school too. Crikie it sounds like they aren't getting too much accomplished, so why not let her chose, maybe they might be able to get something done...they may even be surprised...or hey, I know this takes a bit of creativity, but maybe if she likes to stick to math for example (and who'd blame her, LOL, girl after my own heart!) I'm sure they could find a way to work some of those other goals into math...

peglem

05-19-2009, 05:40 PM

The more I think about the school issue, the more I realize that it boils down to philosophical differences. They think its about what they can get her to do, we think it should be about developmental growth/progress. Even if they can get her to do quantum physics, what good will it ultimately do for her, if she doesn't have the ability to interact socially. That's the picture they are not getting.

Even though I was extremely pleased with her choosing to do that yesterday, especially since she has really abandoned interest in math(BTW-difficulty in previously acquired math skills is very common in PANDAS kids), my focus, what I stressed was how fun it was to do math TOGETHER. My goal, right now is not to get her to work independently, but to learn how to work interdependently.

Aspigander

05-19-2009, 08:04 PM

I don't know why she went there to do the math, but I think if I had initiated that, she would have resisted. At school (I don't know for sure because I really cannot get a good sense of HOW they are working with her at school) I think if she went to the number page, they would probably redirect her to whatever page they want her to work with. Maybe I'm wrong...but even if she did go there, I think what they'd "see" is that she's stating problems, but is not solving them.
She has one comm device (purchased through her state med. insurance) that she takes back and forth, home to school, when its not broken.

Ah, okay. I really think the school could learn something if they tried following her lead once in a while instead of redirect (if that is in fact what they do).

The important thing about those songs is the rhythm and repetition, and they are ones that outside of meltdown, Allie initiates with us. That patterning is important for regulating. Its kinda like your jumping, it works and she enjoys it AND as a former Kinder teacher (12 years there), I know these songs make you feel good, happy....you cannot sing or listen to them without having your spirits lifted. For about 10 years Allie has repeatedly played Raffi videos, some might even feel excessively, but still, I enjoy those videos. I sing with them and they provoke joy....I don't know why, there's just something about them that seems to mesh with some underlying mind/body rhythm. Allie does listen to and enjoy more sophisticated music as well, but when her soul is crying out for peace...those do the trick.

Ah, okay, seems like those songs work for her then. That's good. :)

I think when you mentioned my jumping there, I realized why I thought I'd be mortified if someone joined in, and why I wondered if Allie might prefer more sophisticated music (as I said, if someone tried to get me to sing those songs at 14 or now at 25 I think I'd keel over lol). I think I have this idea in my head that once you're past a certain age, there's things that you just don't do. And I can just imagine those songs being one of them.

I actually like that song, and its fun to sing with (even though, obviously, i don't know all the words), but I don't think its the kind of song I would still like after hearing it 200 times, consecutively.

Ah, okay, gotcha. Honestly, there are a few GL songs that have become a little old after all the repetition, but at some point I'll generally start listening again.

lisa6wks

05-19-2009, 09:24 PM

Peg,
I totally agree with your take on Allie being bored about what they are trying to teach her. That's why I really like functional curriculums being taught. Working with money for math, reading signs and words that are important to her, in her life.
As for the songs, I am with you in that I like the same songs you do, I used to sing "Baby Beluga" in the grocery store and embarass the heck out of my kids :) My little kiddle at school has begun to sing songs from musicals. Her current favorite (which of course she sings with no words, but almost perfect pitch) is "Do Re Mi" from The Sound of Music. I burnt her a cd of show tunes which she seems to like. I am thinking of helping her to become more tolerant of ear phones so she can take her music with her to places that are stressing her out. She definitely signs for "music" when she wants it. What is really strange about all of this is that she is hard of hearing and wears hearing aids, but she really loves music.

Lisa

Kristen (ColeysMom)

05-20-2009, 10:57 AM

I agree Pegs, and would assume school would too, that working interdependently is an important goal. Actually more than that, incouraging independence would be counterproductive.

I hope I am not implying that...I'm not sure where that point came from.

The point I was making, is that the materials that they use to facilitate her growth, in any area...acedemically or otherwise, needs to be advanced.

I hope they aren't expecting her to just do this stuff independently...they aren't right? She's got fine motor difficulties (at bare minimum) that would make that more than frustrating for her, right?

Please don't tell me that these people are THAT bad.

So assuming they aren't, as I'm twitching at the possibility, I think it makes it necessary for her to colloborate with her assignments. This is what they are having trouble with due to her behavior, right?

So if they perhaps advance the material, peek her interest, challenge her, they might see better results??????

peglem

05-20-2009, 12:32 PM

The point I was making, is that the materials that they use to facilitate her growth, in any area...acedemically or otherwise, needs to be advanced.

yes, or at least interesting to her. But, it can be difficult to find that line, where it just challenges her enough, but doesn't frustrate. Following her lead, like Lauren says, would help alot. So, the IEP objectives need to be written so there is flexibility, because those are the things they are required to document progress on.

Kristen (ColeysMom)

05-20-2009, 01:02 PM

Exactly!!!

You may need to define flexibility for them though. I'm not trying to be wise here. In the same manner that you described the RDI 'approach' to them, I think perhaps describing, or requesting that their approach be flexible...like, if it is time for a specific activity and she is interested in math...they could do math and change her schedule...that's one way, but they could also figure out how to use the math page to accomplish the same lesson. And if it is absolutley counter to their goals that day or that moment or whatever...what's the big hairy deal if they just let her do it and make a 'deal' with her or whatever. Ya know? Lighten up and let her lead...they could even ask her if she prefers math to the other activity...and make a big hoopla over the fact that she expressed a 'like'...

And I'm sure you could come up with WAY better ideas...I'm just blurting out stuff explain my meaning. They totally need to loosen up!

So are you skipping the meeting today?

peglem

05-20-2009, 02:18 PM

Actually, I indefinitely postponed the completion of the IEP until it is determined which school she will be going to...no use (I figure) in hammering out the details with the wrong boneheads!

Kristen (ColeysMom)

05-20-2009, 02:22 PM

Makes sense. When will you know?

peglem

05-20-2009, 02:25 PM

Early next week. It feels good to kinda get a reprieve, I'm tired of dealing with it.

peglem

05-20-2009, 03:28 PM

Kristen (ColeysMom)

05-20-2009, 05:50 PM

Pegs, I'm sorry I haven't responded to your last post...I'm shocked and really disappointed too...I'm sorry! I wish I had something better to say...:(

[[[[[hugs]]]]]

ps. can we beat them now?

Aspigander

05-20-2009, 07:05 PM

Bummer.

So the district is opening a class for autistic students, but is ill equipped to handle meltdowns? Something doesn't seem quite right with that picture.

I hope I don't sound cold, but while it's disappointing, perhaps Allie is better off at the not-so-good place she's in now, if the district is that ill prepared.

Kristen (ColeysMom)

05-22-2009, 12:35 PM

Ok, here's the quote I mentioned in the othe thread...I feel like I'm missing the point or it's stopping short. I see the obvious one, about giving the 'community' ownership & perspective, and also the CLEAR message sent to Gregory by his mom about his importance as a person...but there is something else that I feel like I'm missing:

Building community one meeting at a time

Communities are not just static entities such as classrooms or social groups. You build community in a child's life by your example and affirmation on a daily basis, as opportunities present themselves. A breif example from my son Gregory's life illustrates this idea that community is as mucha process as an end result.

Joanne (his wife), Gregory and I recently attended a meeting convened to plan Gregories educational process post-high school. Though all those who attended were committed to Gregory's well-being, and highly professional in their approach, there was a tendency to focus on Gregory's learning disabilities and miss his positives in the discussion. As the meeting went on, it became clear that Gregory, the person we knew, would get lost in the discussion. Joann, seeing the direction of the discussion, took the floor. As she spoke, she changed the analytical tone of the discussion to make clear that it was primarily the presence of supportive communities in Gregory's life that has helped him get through.

Joanne told Gregory's story from beginning the beginning, describing the many supportive circles of community that have been part of his life-family, friends, school, neighborhood, professionals, and the wider circle of the community that knows Gregory from articles, books, and television (he wrote about having Tourettes and was interviewed by the local paper, his parent's are both authors). She highlighted the success he had experienced as well as the awful moments. She thanked by name several of the professionals from his past who had helped him. She described Gregory's strengths and most important, how he has benefited from his interaction with all the communities that touched his life-the schools, the social service agencies, the police, and the people in her church who pray for Gregory'. She finished by thanking those at the meeting for being Gregory's community now. She made it clear that the most important two things that they could do for Gregory were to respect him, and to work together on his behalf.

We mark this meeting with the date on which it occured because it is now part of Gregory's great story. The meeting could have been just another unpleasant experince for Gregory; having his personality disected in public by people who did not know him. But as a result of Joanne's refram of the group as a part of Gregory's community, it assumed a new energy-one marked by optomism, acceptance, and addirmation. In the long-run it will be these three essential qualities of community that will guide Gregory's positive genius into the world.

peglem

05-22-2009, 02:41 PM

There is no way they would allow me, at an IEP meeting to take the floor and spend much time "going over her history." Not only that, Allie's community has been home and school- that's it.

I don't know if you're missing something or not....I didn't think the overall point was that clear. Maybe in the context of the whole chapter.... Its sounds a bit on the self congratulatory side.

Kristen (ColeysMom)

05-22-2009, 02:55 PM

Yeah, I don't think anyone could really do that...IEP meetings are short and generally have an agenda...perhaps it didn't take as long to say as we imagine it would take...I dunno.

I think the loudest point is that the school plays a pretty significant role (more than education)...it's not all about business...I think in Allie's case that's even more significant...given that her only other place is home.

Maybe it's just illustrating how important EVERYTHING is...

Maybe just reminding school that she's more than these deficits, and much more than a chart that marks her successes and THEIR failures at connecting with her.

It didn't really read as self-congratulatory...so you're probably right about it being removed from the context...

I've moved on, I actually read that before school gave you a reply on the new program...it still bugs me a bit...maybe I'll reread that chapter after I finish the book.

I've read about 2/3 so far.

peglem

05-22-2009, 03:02 PM

I emailed the school rep and told her I was disappointed in the placement decision, being as Allie has made so little progress in her current placement, and so I didn't see that as an appropriate setting either. She replied that the intention was to bring Allie into the program "sometime during the school year" once it is up and running to make sure they have everything in place to meet her needs. (I think they mean once Accel gets the aggression taken care of.) She offered to discuss other options with us...so that's where we are there. I'm not too hopeful, but, hey, who knows?

milivica

05-22-2009, 03:09 PM

Well, I just got a call from the teacher of the district program, they're keeping Allie where she's at due to aggressive behaviors toward staff. I didn't think I'd be this disappointed. It feels like nobody else wants her.

Peg I'm so sorry, I don't blame you for feeling like that. WTF, all the 'data' and talk and input and waiting and that's the decision.

I understand them being taught this old dogma and being unable to know what to do for Allie, I do not and will never understand being unwilling to explore concepts that have not been tried with her, so might work. Educators that are unwilling or unable to learn what their students need are useless to them. I thought the point of being an educator was not only loving to teach but loving to learn. You're a teacher, am I being too harsh?

It makes me so angry.

Kristen (ColeysMom)

05-22-2009, 03:45 PM

I can understand your lack of hope...I don't have too much confidence in these people either! And saddly, I know that you have more details about it than I, so can just only imagine how frustrated and discouraged you are! It makes ME want to cry just thinking about it...

So, where are they in their efforts to manage her "aggression"? Which perhaps they might need a little reminder that it's an expression of SOMETHING! It's not a random uncontrolable burst of energy directed toward whomever may be present. GAWD!

Have they offered any new ideas? I'm just going to scream mine again...let her lead! Offer some challenge! UGH!

Where did I put that bullhorn?

Lauren, have you ordered that spike yet?

These people are THICK! And I agree with Mili...commited to education...they may want to open their own minds to the idea themselves! If they would only LISTEN to Allie...I'm just going to walk away mumbling obsenities to myself now....

peglem

05-22-2009, 04:25 PM

Peg I'm so sorry, I don't blame you for feeling like that. WTF, all the 'data' and talk and input and waiting and that's the decision.

I understand them being taught this old dogma and being unable to know what to do for Allie, I do not and will never understand being unwilling to explore concepts that have not been tried with her, so might work. Educators that are unwilling or unable to learn what their students need are useless to them. I thought the point of being an educator was not only loving to teach but loving to learn. You're a teacher, am I being too harsh?

It makes me so angry.

Well, they love teaching, just not teaching Allie. They love learning anything that confirms what they're doing is correct. I have no idea if the new program would be appropriate for Allie or not, I just thought it was an opportunity to work with a new group of people who might be open to new ideas, seeing as how the first year of any program is a learning experience. But, the other thing is, of course, there are only 6 openings for this program. Starting up a new program is a lot of work and I can see where they'd want to get it running well before they take on "the ultimate challenge".
So, worse case scenario, She stays where she is now and the district knows I want her someplace more appropriate and works on that.

lisa6wks

05-22-2009, 06:57 PM

peglem

05-22-2009, 07:09 PM

Peg,
I love your attitude. I think what you are surmising is probably correct. Once they have the program up and running and worked out some of the bugs, it should be a more conducive environment for Allie. In our county we have a new program for children with autism and extreme behaviors. These are kids that the county would normally have to send away to a self contained school in the past, but they want to try working with them on a one to one behavioral basis in the school setting and then gradually put them back into a less restrictive classrooom setting. It started last year and I can definitely see that it has progressed this year to a much more tightly run program with better staff. I hope this is what happens for Allie.

Who knows there may be a better program out there for her anyway? Will they permit you to observe other classes so you can get a better idea on what is available?
Lisa
Just from viewing programs available on the district website, its pretty clear they don't have anything for her, and of course, I can't observe the new program yet. I have searched schools throughout the Phoenix Metro areas..haven't found anything suitable. Everything is geared toward higher functioning or younger children. If she does stay where she is...she will be with a different teacher. What I'm thinking in that case, is wait until the new teacher arrives and insist on meeting with the teacher, our RDI consultant and possibly my behavior specialist before we hold the IEP meeting to finalize the IEP. This year's teacher was not willing to do that, maybe I'll have better luck with the new teacher.