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Hi! I want to introduce myself. My foster son has been with us for over a year. He came to my home in July of 2007 and he is still here. When he came he could not hold his own bottle, crawl, get to sitting from the floor, no language of any kind (a little babbling, but that's it), and his fine motor skills were EXTREMELY lacking and he ate NOTHING except 4 bottles of pediasure a day. He had been in that home (foster home) for 10 months at the time and he was 15 months old. He had no diagnosis except failure to thrive which was causing developmental delays.
He is now 2.5 years old. He can now eat regular toddler foods and drinks from a sippy cup. He does still get 2 bottles of pediasure a day, but is gaining weight now. He can crawl and get to sitting on his own. He has been pulling up on furniture, but is still scared to try to walk. He will walk if he holds our hands, but sits down a lot (like he tires easily). He receives PT,OT and ST as well as feeding therapy. He has been diagnosised with Autism (moderate to severe) and severe developmental delays.
He still has NO language at all. Though I could SWEAR he said ma-ma this morning and his daycare workers thought he said it later in the day while he was there.
He has come SO far and I just want to continue his growth. The place that diagnosised him with autism is one of the leading autism places in Alabama and they said he'd really benefit from ABA therapy. But there is just no one that will think of doing ABA on medicaid. DHR refuses to pay for it and says I shouldn't do anything since he may be RU with his paternal grandmother. Court is November 9 and it is still VERY much up in the air as to whether he'll be RU or not.
Have any of you had to do this dance? I want to get him what he needs but I just don't know how?! It's very very frustrating to me. We'll adopt him in a heartbeat if he needs a home, but we are also trying to be very supportive of RU if he can go there.
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Is there any line where you can 'petition' that this therapy is in his best interests---regardless of whether he's reunited or not? To me, shouldn't matter WHO he's going to live with.....he still has these symptoms which should be treated!!!! If you don't know who to deal with....does he have a CASA worker too? Maybe even talking to his GAL (guardian at liem).....who is (are) supposed to be looking out for the best interests of the child--regardless of whom they live with, KWIM?
Good luck. I"m glad this child has you to advocate for him!
Sincerely,
Linny
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Have you checked out state programs that could help him. Here in Wisconsin we have the waiver system, which is state funded ABA therapy. There is a horribly long waitlist though. But either way you would want to get him on that list ASAP.
I'm not exactly sure how it would work with a foster child since it was my bio son who was diagnosed and now going to start receiving ABA. But that would be something to seriously look into.
Another suggestion would be for you to join on online autism support group, like autism speaks, because there you could ask state specific questions that others would be able to answer for you.
If you need me, pm me. And I will answer any questions you may have.
I don't know about the funding... but figure out a way to do it!!!Intensive therapy has been a miracle for my son. He is still moderately to severely autistic, but his level of engagement is sooooo improved. Seriously, do whatever you have to do to get him the therapy.And, if he ru's in November, then you can pass the info on the grandma I guess. But he needs it now... the best window for treatment of autism is 0 - 5 years old.Also, have you tried signing with your son? We started this with our son in June and by July he was talking. He still only labels things, not typical speech, but talking! And he uses many many hundreds of signs.
He doesn't have a CASA (or at least we've never heard of it). His GAL sucks... never met him... EVER... and she is supposed to speak for him in court in two weeks!
We do sign with him, he can do "more" but not consistently. We also do "cards" which he uses to choose what he wants. I'm not sure that is actually him choosing yet, but we're being consistent with it. We work on his walking and speech all the time. Like literally, all the time he is awake we are "playing" with him and working on something. Right now, I have him standing up at a table in front of me so he can play with toys while standing and hopefully it encourages him to cruise (when I stop typing I'll try to get to move more).
I've looked into the state funding... the waiting lists are MASSIVE! I've called numerous places that people have recommended. I just haven't found anyone who really wants to help me. :(
I am so sorry that there aren't better supports in place. And yes pretty much whereever you look there are going to be long, long, long waitlists. My son had to wait a year and a half to finally start state funded ABA. Which is actually pretty good considering.
I know it all seems overwhelming right now and you feel powerless. But from what you post, you are doing everything you should be doing.
Floor time is something that you could do at home on your own. Definately something to google.
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It's excellent that he's got a diagnosis already - that's a step in the right direction.
Look into the state funded programs. He will qualify for whatever your state's birth to three program is, and then as soon as he's 3 he will qualify for services from the school district.
You'll probably find if you do all the legwork, so that all the GAL needs to do is sign some forms, they'll be more receptive.
As people said, there are huge waitlists. In the interim, there's no reason you can't start ABA on your own. It's absolutely NOT rocket science, and, with a bit of practice anyone can do it!
There are a lot of great books out there, that explain how ABA works, and even provide templates for data taking and sample curriculums.
The most useful books, in my opinion, are:
[url=http://www.amazon.com/Behavioral-Intervention-Young-Children-Autism/dp/0890796831/ref=sr_1_1?ie=UTF8&s=books&qid=1257183250&sr=1-1]Behavioural Intervention by Catherine Maurice[/url]
and
[url=http://www.amazon.com/ABA-Program-Companion-Organizing-Programs/dp/0966526678/ref=pd_sim_b_6]ABA Program Companion[/url] (comes with a CD for PC users, and has loads of ready-to-use stuff) paired with [url=http://www.amazon.com/Work-Progress-Management-Strategies-Curriculum/dp/0966526600/ref=pd_bxgy_b_img_b]A Work in Progress[/url]
You can also look up ABA on You Tube and find video clips of people actually doing ABA with kids, which will help transfer what you read to what it actually looks like.
One more helpful text by the guy who "invented" ABA:
[url=http://www.amazon.com/Teaching-Individuals-Developmental-Delays-Intervention/dp/0890798893/ref=sr_1_1?ie=UTF8&s=books&qid=1257183624&sr=1-1]Teaching Individuals with Developmental Delays[/url]
And a book that doesn't have a whole lot of "how to", but is really inspiring:
[url=http://www.amazon.com/Let-Me-Hear-Your-Voice/dp/0449906647/ref=pd_sim_b_6]Let Me Hear Your Voice[/url]
Your little guy may be MR, or may not - kids with autism often have normal intelligence but perform way below their peers due to language and social deficits. However, of kids with autism who begin receiving 25-30 hours a week of ABA at age 3, 50% are indistinguishable from their peers by the time they enter Kindergarten, and all show improvement. That's HUGE!!!
My son, who is autistic, didn't receive early intervention, and I really believe that, if he had, he'd be a lot further ahead today.
Good luck!
SarahBethsMommy
SO far and I just want to continue his growth. The place that diagnosised him with autism is one of the leading autism places in Alabama and they said he'd really benefit from ABA therapy. But there is just no one that will think of doing ABA on medicaid. DHR refuses to pay for it and says I shouldn't do anything since he may be RU with his paternal grandmother. Court is November 9 and it is still VERY much up in the air as to whether he'll be RU or not.