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.

Thursday, November 22, 2012

Thanksgiving - autism-style.

Today was a great day.

I woke up, ran over 7.5 miles (sa-weet!), and came back home to a sweet, snuggly (albeit sick) JT.

We started the turkey, prepped the broccoli cheese rice casserole and the mashed potatoes, and sat down to watch tv and be lazy.

At dinner, the hubs and I had a little of everything. Audrey was all about the turkey and potatoes.

JT had Doritos, glazed donuts and Cheetos.

Thanksgiving is all about enjoying great food and spending time with family. Whether it's turkey or donuts.

At the end of the day, we're all full, happy and we all had a relaxing, fun day.

Big. Fat. Win. 

Tuesday, November 20, 2012


JT's most difficult areas in school are reading and writing.

Imagine my surprise today when I opened his backpack and found a spelling test with a grade of 100%!


Monday, November 19, 2012


Since earlier this summer, I have been on a weight loss journey (my last one, I am not doing this to my body again). So far I have lost roughly 30 pounds, and while I have some left to be at my goal weight, I am now at a healthy weight and a good size. I'm happy, even if I'm not quite where I want to finish up at.

Part of that journey has included running. I've been running since 7th grade on and off... That's 21 years. Most of my life, I've been running.

I am finally to the point where I really enjoy it again. It takes time to get in shape (especially with those additional 30 pounds!).

It has always been a release for me, therapeutic, a way to get away from everything and take some 'me' time and think. To break away from responsibility and just be free for a short period of time.

This weekend I ran 6 miles. I barely felt it. I got lost in thought, my mind full of autism and JT and the future. My eardrums vibrating from the (too-loud) music beat.

And I realized, running is the only time I allow myself to feel weak. To feel like maybe I do carry a heavy load, and that sometimes it feels like it's crushing me bit by bit. The irony of doing the thing that makes me strong while feeling my weakest emotionally is definitely there.

Maybe that's why I love running.

I get my frustrations out, pounding my feet on the pavement. I allow myself to feel things I don't in my regular life.

When I get back home, I am myself again. I feel recharged, refreshed and able to take on anything.

Maybe it takes weakness to feel strength, and strength to feel weakness.

Whatever it is, I'm thankful for it. Thankful I am able to go out and wander. To be free for a while. 

Monday, November 5, 2012

ID, IQ and why grad school rocks.

This semester in my diagnostics class has been odd. The parallels between my life and the class have been amazing.

Of course, we are going through the 3 year re-evaluation process with JT, so there's a lot of 'diagnostics and assessment' going on. That's a big part of it.

Last week was huge, though.

Our discussion was on Intellectual Disabilities (ID) and IQ tests.

Part of JT's 3 year re-eval is the IQ test. When JT was diagnosed at 2 with autism, they also told me he would likely never speak and that he was likely 'severely mentally retarded' (their term, the correct term is 'cognitively impaired' now). They said I should get an IQ assessment done around the age of 7 (IQ tests aren't reliable before then) to confirm.

Since that day, I have been terrified.

I cannot explain why. He has autism. I know this. He has difficulty with many things. He has depression. He has OCD (part of the autism). He has anxiety (also a part of the autism).

But an ID? I just couldn't handle that.

Until last week and our class discussion.

We talked about a lot, but here are the things that I have highlighted in my notes:

IQ is what a child does, not what a child is. 
It is not fixed or unchanging. 
It is not a measure of potential. 

It dawned on me that it doesn't matter. IQ isn't reflective of what your child can accomplish. It doesn't mean you put restrictions on them or lower your expectations. It is just a snapshot of right now how they perform on this test versus their peers. It does not define them.

Thursday, November 1, 2012

Halloween 2012

Here you have Batman and Batgirl!

We had a great time trick-or-treating. JT was great, chatting up the neighbors (sometimes forgetting candy after talking with the person passing it out). He was done after an hour, but we had walked all around our neighborhood and our neighbor and Audrey were tired, too. They got way too much candy and all had a great time.

In fact, JT is lying on the floor in his costume watching tv right now. He's a little upset today that Halloween is over. I'm glad he had fun at least!

I'm also participating in BlogHer's NaBloPoMo (basically you blog every day in November :) ) since I've been slacking at posting lately. Fun stuff!