Exhaling

Crucial IEP meeting, no idea what to expect (but told by many to expect the worst), no firm hold on the law. I know what John needs, I’m told by many on his EI team that he will get something else. I am a master juggler, right? Our days are packed — if they were any more full I’d have to get up at 6 a.m. just to take a shower. Wait, I already do!

But in one week I read two books on IEPs from Wrightslaw (At night…thank goodness for summer TV, there’s nothing to watch — except The Closer and Top Chef and the last dying breaths of Studio 60). It’s been like cramming for final exams around here. The only thing is the subject matter is our boys, and well, you can’t really cram on your children. You either know them or you don’t. And I know ’em — I only live and breathe them every single minute of the day, right? But there is a lot to be discovered by comparing a calendar (and it’s zillion therapies and classes, etc., etc.) with say… transition testing. Or reading the entire IDEA 2004 Regulations.

In the end, there was a lot of value in doing our homework. It was critical to get two letters from professionals who know John and know what he can do. It was impressive to have two thick binders full of treatment and progress records to plunk down at our meeting. And I think it really helped me focus after I placed my ipod on the table to record both meetings (thanks for the iTalk, dad!) Of course, the most important key to our eventual success was the presence of two charming little boys.

John babbled throughout the meeting. No words, but lots and lots of glorious sounds. He checked in with me several times during the two hours and was cranky only at the end. When I pointed out that John’s transition testing took place only two months after he began ABA and before we even increased the intensity from 10 to 16 hours a week, we felt the tide might slowly turn in our favor. On paper, John wasn’t looking so great — we were facing very low transition scores, some in the 4-6 month range (don’t get me started on the insanity of using these tests with children who are nonverbal!) The representative sent from the autism program studied him intently and tried to get in his space. She smiled a lot, we took that as a good sign.

And so when we got to the point in the meeting where they asked us if we had seen all of the available programs and what were our thoughts for John, we said “We really think he needs ‘Dream Program’ because of this, this, and this.”

And they turned to the representative from the autism program (a halo now around her head) and she responded “I couldn’t agree more.”

I may have shouted with happiness (no, I don’t think I did, I’ll have to go back and listen to the recording), but after that everything fell into place for John and a lightness settled over me that I find really hard to explain because it feels so foreign these days.

And the “Dream Program” is this: M-F, 9am to 3pm, a preschool class for kids with autism that uses ABA and discrete trials 1:1. So more of what he’s been doing and more of what has been helping and yet not so isolated as he is with his home program.

I feel terrible to give Sam such short shrift here, but there was never any doubt he’d get his program: M-F, 3 hours per day, in a more traditional preschool class for children with a variety of developmental delays. And the hope that he will keep making such great progress, which he appears to be doing at lightning speed these days.

The lightness lingers. What will I do if it is here to stay?

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  • Congrats! I actually have goose bumps right now. I am thrilled for you guys!

    Enjoy the lightness! It is exciting to know that you are getting what your boys need! They deserve it and you deserve it! You deserve to bask in the feeling that there are people there to help you! This is at such a pivotal point for the boys too!

    Thanks for sharing your news!

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