Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, February 03, 2011

The Mystery Named Axel

Today was Axel's MRI and ABR.

*note* As I wrote this, it turned into a "thinking out loud" post, and probably doesn't make much sense, and I may have used words or terms that leave you going, "Huh?"

His hearing is 100% normal. That's a good thing, right? Yeah, only it doesn't answer why he is has such an intense difficulty imitating sounds. He tries SO HARD. So hard that you can see the tiny muscles in his lips quiver as he tries to get the sound from his brain to his mouth. He WANTS to talk. He wants to be free to say whatever he wants to say.

He is signing 150-200 signs, and if I sign everything when I give him directions, he understands the majority of it. If I show him a new sign ONCE today, he has it stashed in  his memory. He loves to save his new signs...the ones I don't know he has etched in his brain...and use them on Dean who is then stuck not understanding, and trying to explain to me on the over the phone what Axel is doing and I can't even guess because I didn't realize Axel had a new sign!

The problem with a normal hearing test is it makes determining his school placement that much more difficult. I still think he needs the ASL immersion program, except now he's hearing so even though he needs that to gain expressive communcation (in other words, to build his sign vocabulary) he won't get fluent spoken language there with the other kids since they're all deaf or heard of hearing.

So now what?

I don't agree that a DCD (developmental/cognitive disabilities) classroom is necessarily the right fit either. Yes, Axel has delays in his learning but it's pretty clear that it has everything to do with lack of exposure to educational materials. He's learning as fast as I can teach him right now.  I introduced numbers to him 2 weeks ago, and he's counting to 10 in ASL, and we're adding 11-20 now. He recognizes about 1/2 of the alphabet. Can spell his name in ASL and is writing it as well. He's now learning how to fingerspell his last name.

Sorry, but cognitive delay does is not a label that fits him.

Not only that, but his ASL vocabulary has already bypassed most of the DCD teachers in the district. Giving him an aid who signs a few hundred signs is going to greatly limit him.

As a parent, where do I suggest placing him in school? What's the "least restrictive environment" for him? LRE doesn't always mean mainstream classroom. To me LRE means "where the child will learn the best, with the most potential for growth". For some kids, that is NOT the mainstream classroom.

Maybe an ELL (English Language Learner) classroom? But what about sign? How do we do that in an ELL program? I don't know if the district will give him an interpreter since he doesn't have a hearing loss. However, ASL is clearly his only method of communication, and he's not going to be depending upon speech any time soon.

Cued speech is another option I haven't even tried with him yet. We know he has the fine motor ability to cue. He's hearing English. CS would give him a visual representation of English. With CS I can work on the individual sounds of speech, which will carry over into reading and writing too. Maybe for Axel it is more appropriate than ASL? We're early enough into this that I could switch. Or we can do both (deaf kids do all the time.) and poor Dean will be left in the dust. That wouldn't be good. But, I didn't start cuing with Angela until she was 7 and she picked it up (receptively) very quickly.

I guess I know nothing until the meeting with school.

As for Axel's MRI, we don't have the results back from that yet.

1 comment:

Scarehaircare said...

As the parent you have the top decision on where he goes. I wish I were closer so I could come visit and watch Alex with his signs and see you start cued English. I never thought of using cued English for kids with DS but it would be a great idea. I guess I'd better find a workshop.