Sunday, January 21, 2007

The Autism Spectrum & Asperger’s ….. You’re affected.

First of all - Heather and Flee - how fun! You made my day. It's so great to hear from you! Heather - your family is beautiful! I look forward to catching up, and seeing how wonderfully our God is at work in your life. And Flee - if you come in March, I would love to hang out! In fact... Jason and I are thinking of having a good old fashioned AIM night at our house one of the nights... just singing, and chatting and catching up. That would be a highlight for me. :-)


I'm finally keeping my word on a few posts to share about Asperger's Syndrome.
I’ve procrastinated for a while in writing this, partly because of the time it would require, but partly because of the emotion it would require. But I’m up for the task this week, so I figure it’s a good time to start.

This isn’t the normal type of writing I do. But I’m writing on this subject because if you know us, and spend any time with our family, then it’s a worthwhile investment for me to share some of what we’ve learned… if you are up for it too.
Our son, Eli, has Asperger's. It's hard to write that. He doesn't really know, so if you talk to him, please don't mention it. ( That sounds hillarious as I write it out!) But it's amazing that you can live with it and not really get it. And I'm fine with that. I asked recently at a seminar when it's best to tell your child... and it was recommended that you wait until they ask you, which makes sense. So we are.

And if you don’t know us and just happen to stroll through, odds are you know someone on the autism spectrum and may not even know it.

That’s a good place to start, I think. When trying to comprehend autism, it’s probably more helpful to refer to the “Autism Spectrum” - because there is a wide range of what autism looks and functions like in the people who have it. If you go to Memorial, you will encounter multiple people on "the spectrum", adults and kids alike. Most people, when they hear autism, initially think of the movie Rainman. In fact, that was the place Jason and I began our introduction to it too. Rainman was on the "spectrum" for sure. But Bill Gates demonstrates traits of someone with Aspergers (on the spectrum) as well. It's a big range!

I'll start with our personal story.
When Eli was two, he was a funny combination of incredibly smart and oddly quirky. He began speaking early and even exhibited early reading skills without help… it seemed like he was just wired to get words and numbers. He didn’t like snow…or for towels to hang unevenly, or for the microwave clock to be left “blinking”.
When it’s the first child you have raised… everything is new… - so who knows what is normal and what’s not? You just know “wonderful.” And we did.

However, things did happen that made me think something was different. One incident that was memorable happened when he was two. We had an “Upwards” game board that he loved to play with. ( A game much like Scrabble, but with extra letter tiles that you could stack on top of each other and change words by building up as well as on to other words.) Eli loved playing with the pieces of that game. But one day he was especially distressed. A tile was missing. He’d looked all over for it. To tell you the truth, I can’t even remember for sure how he knew one was gone, except that the board was big enough that I think for all the tiles to fit on to it & he was short one.
As I said, he was really upset about the missing tile. We looked for it, and couldn’t find it. He said, “Momma, I think it’s the E” that’s missing.
I thought that was funny, because there are tons of alphabet tiles in that game. And yet, I’d experienced enough oddball things with him that I tucked it away mentally. We never found the tile.

Until a few months later. He had turned three, and I was cleaning out his toy box to make room for news gifts received on his birthday. As I dumped out the contents of that box, there at the bottom of it was the tile.
An E.

I’m not an idiot and I get coincidences. I knew, though I didn’t know how it could be, that this was not one. I called Jason, because I was genuinely freaked out. He came home from work. I can remember stepping out in the garage and explaining to him what had happened. We both just looked in the screen door to the room where Eli sat innocently watching a movie. I remember looking at him like he was the kid from the movie “Sixth Sense.” I felt guilty and scared and not sure of what to do with that.

We called his pediatrician and made an appointment. As I explained the things we’d experienced and the incident of the “E”… I referenced the movie Rainman. That moment is frozen in my head.

We had an amazing pediatrician, who reassured me that Eli was not a Savant, as the movie depicted. But he did let us know that we would deal with “this” more and more, and especially as Eli began school. “Schools aren’t really designed for kids that think like he does… but you can cross that bridge when you get there,” he said.

What is the "this" he referred to, I wondered? How exactly does he “think”? I can remember wanting to know more, and knowing the doctor wasn't going to offer more at the time. Why would school be a problem for a kid that can remember a ton of alphabet tiles and know exactly which one is missing at age two?!? Seriously? (I was thinking we should call Oprah too!!)

And yet, I was thankful that he wasn’t Rainman. And we had a few years before school would begin, so I thought I would do exactly what he said… and put it out of my mind.

And I did, for about 6 more months. But I'll stop there for tonight.

(And I WON'T take 6 months for the next post, I promise.) :-)


MommaFlee said...

Heather...thanks for sharing. I knew that Eli had asperger's but didn't know more of that story. I'm very interested to hear the rest of that story and where you guys are today. I'm sure that writing that post was a chore...but am thankful for your courage to go there. You're a good woman!

Angie said...

YAY! I have been waiting for this, Heather! But you've gone above and beyond what I thought you'd share. Thanks so much for making the informational personal. Putting any info in narrative form just brings it to life... and when it has to do with people I LOVE SO MUCH... it's a winning combination for me!


Angie said...

Oh... and having a get-together at your place in March sounds like a dream to me! I sure do hope we can make it dream come true. You guys are the best!

Jill said...

Heather, thanks so much for sharing something so personal. I never knew that Eli dealt with this, but I'm very interested in your story and look forward to your future posts. Love you!

tim rush said...

I got to talk to Stuart McG. the other day... you know the publisher. And he was talking about how he wishes you would write a book.

He is so right! You've really got a gift.

Cindy said...

Thanks for the post. I just love Eli.
Hopefully this isn’t my 10th post. My computer keeps freezing tonight. If so just delete the rest. :-)

I had to tell our son last week that he has Aspeger's, because he read his speech IEP which mentioned it. He is reading some of my books on Asperger’s now.

There were so many incidents that made us worry over the years. When he was 2, he programmed our CD player to play his favorite Barney songs. He couldn’t talk yet and didn’t respond when we called him. I just looked at him and thought… this isn’t normal. I also thought of Rainman.

He was obsessed with math and when he did start talking more, it was all he talked about. He used to love to play Monopoly by himself and be all the players.
I still go in and out of denial.
I am looking forward to your book too. :-)

Brenda said...

I too have not told Ian he has Aspergers yet. Even though Dr.s feel he is old enough to understand it now. It comes with me accepting it and dealing with it first. Thank you so much for sharing your story and I hope you will come and go to conncention groups with me about this. I think we will learn so much!