Friday, November 30, 2012

Tonight I used the "A" Word.

JT and 'Cookie', his Beanie Boo (he loves Beanie Boo's - HUGE collection!)

We have never danced around the subject of autism around JT. We have used the word freely. But never with him.

Let me back up a few steps first, though. I have to explain why tonight would be the night I would choose to tell my son he has autism.

Today we had his 3 year re-determination for special education services.

It involved some results that while, not surprising, were difficult to hear. Severely delayed in language (really in expressive in particular). A lot of results that weren't surprising that were good to hear - like that his IQ is in the average to above average range (take THAT children's hospital team who said my son would never talk and was likely severely cognitively impaired! My team suggested sending you the results of JT's IQ test today... they made me giggle just a little in the midst of the 2+ hour process). Results that did surprise me - he no longer needs OT (I saw samples of work)... Academically he is average in every single area - what the hey?!

What was the hardest thing to hear hands-down was the negative self-talk he had during the process. The Speech therapist (ST) and psychologist reported him saying he was "dumb" and whispering "dumb, dumb" under his breath multiple times. This came usually when presented with a task he was unable to complete. The ST was unable to write anything on her evaluations, instead taking 'coded' notes on another sheet of paper, because JT was watching her to make sure he got it "right", and would get upset if he was wrong.

When it came time for the school psychologist to give her results, she told me she knew why JT was so hard on himself. She said his IQ (particularly his nonverbal) is so high that he is 'acutely aware of what he cannot do that his peers can do'.

I can't fully put into words what the meeting was like today. There was relief that my 5 year wait to hear whether or not he was cognitively impaired was over. Sadness about speech results, and the fact that he is so hard on himself. Happiness that he is doing so well and his team ADORES him, and knows him amazingly well. Heart-swelling love for the people in the room that were so quick to point out that JT has only been talking 3 years... and for a 3 year old, he's advanced! "Imagine what he'll be doing in 3 more years, 4 more years!" Distress that even they know that he needs 1:1 to learn best, and that they can't always provide it. Happiness that they DO provide it in the instances he needs it - reading, and mainstream math - his worst and best subjects.

Hearing administrators say that feeding therapy (behavioral) should be included in an IEP because 'eating affects everything' (our SD does NOT cover feeding therapy). That an AU student not getting a diploma is complete and utter B.S... THAT is heartening. That they agree, that they want to do more... they are doing everything they can. To hear his teacher say that someday JT will have a good job, make good money because 'he's SO smart and capable', that 'someday he will be completely mainstreamed, we just need to work to get him there' - THAT lifts my spirits.

I'm studying all this stuff in my classes (particularly diagnostics). I know what these numbers mean. That was the reason my breath caught in my throat when I saw his standard scores for speech. Why I smiled so big at his nonverbal IQ score. Why it was impossible to just listen to what they were saying and instead look at the standard score and know where he stands.

More than 2 SD's below average with speech just about kicked the wind right out of me. It seems so huge.

But JT has done huge before.

He had a 95% delay (or more) in every area at 26 months.

He's not even close to that now. He's closing the gap.

My only goal is to help him feel good about himself.

So tonight I told him he has autism.

"Wha's autism?"

I explained it makes it harder for him to talk, and to listen. That it makes sounds too loud.

I also explained that he is so smart. That his teachers tell me how awesome he is at math. That he is so sweet. And so good. And the best. boy. ever. That he is going to do whatever he wants to do because he is so smart and so many people are going to make sure he can do it.

But I felt kind of guilty. Why did I not have a reason why autism has HELPED him?

The hubs and I are both really good at math. That's not autism. I'm selectively social. Perhaps that's JT's social issues. We won't even touch OCD, I'm a big fan of order and neatness :) So is Audrey. Totally genetics. Science? Totally the hubs. I mean, our family is a bunch of nerds. Maybe he just has issues on top of that? But still, not a 'positive' for autism.

I want something good to say. I want to be able to say, THIS is what autism does for you.

But what I see is that it makes him feel like he's dumb, be in a separate classroom, hard for him to talk and cause motor planning impairments (an OT thing that we discussed today in detail). He has told me he feels like he has to perform routines (talking before he drinks or eats, repeating phrases, flapping, running, etc) and he tells me others don't do it - so he's unable to control it but he knows others don't do it (he's fine with it at home, kid runs laps like nobody's business around our living room). It means his diet is so limited I'm left to feed him infant vitamin drops to make up for nutritional deficiencies (hidden in the chocolatiest milk you will ever find so he can't taste it).

I LOVE him. LOVE. He is PERFECT. And mine. Autism or no.

Ideas? I want something positive to say. Maybe I'm not seeing something. If you've got something, please help. Seriously.

1 comment:

  1. How are there no comments on this post!?

    Autism can be positive in so many ways! I think pointing out his strengths in math is a great way to point out how autism helps him and how he is smart in other ways kids his age aren't! Or that autism makes him honest, and kind. Or their sense of humor (oh the jokes my 3 year old ASD boy can make and he has a severe speech delay too!) Or that he is so good at the iPad!

    I can't wait to hear about his progress - for a mom who's 3 year old was just diagnosed this year, this post gives me hope!