Wednesday, October 14, 2009

More talk

We're just all about talking about disability here these days.

After dinner tonight, as Abe was empyting the dishwasher, he casually asked me if I knew what the chances were of someone being diagnosed with autism.

I knew it was high, but couldn't remember exactly. "One in 100?" I guessed. "One in one hundred fifty," he told me.

He saw a commercial on TV by Autism Speaks that caught his attention and was wowed by the high incidence. I wonder if he would have paid attention before we read Al Capone Does My Shirts?

Next he asked when we found out Oscar had PWS.  The answer rolls off my tongue easier than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."

"Hmm", Abe mused. "So he got it after he was born?"

"No, it happened in utero, when he was still inside me."

"So, you did it?"

"Well, kind of, but not really...." And then I launched into a discussion of how my egg had two chromosome 15s by accident and Paul's sperm only had one, as it should.  We talked about how the wrong chromosome 15 (Paul's) got kicked out, leaving Oscar with two maternal copies, and thus PWS.

I told Abe that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out. He would have had trisomy 15.

A shadow fell over his freckly face and he looked up at me from where he was chucking tupperware haphazardly into the cupboard.

"Wow," he said, "That would have been really sad. To not...have him."

We both got quiet then.  I felt my throat tighten and my eyes well up, again. Because Abe does love Oscar so much. And because I remember that when Oscar was really tiny I was looking for any way out of what I considered to be the horror of PWS.  I remember being pretty angry that the wrong chromosome kicked out...and also that any chromosome had kicked out at all.  Back then I was pretty sure a miscarriage would have been a hell of a lot better than PWS.

Later as I was putting Oscar to bed I read him some math problems that I made up for him today because he had to leave school early and didn't get his homework sheets.  I called it "Zookeeper Math" and there were four word problems on the sheet. We never got around to actually doing them, but I knew he would enjoy hearing them, because, you know, he's going to be a zookeeper when he grows up.

This one was his favorite:

Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?

By the time I'd read all four word problems, Oscar was giggling so hard I thought he was going to have a cataplexy incident.  He hasn't had one in a long time...and they don't worry me like they did when we thought they were seizures. These days they are just a sign that he is really enjoying a joke or a story.

I teased him them. "You love your Mama, don't you Oscar? You love your Mama!!"

Oscar just kept laughing, unable to stop, while I pulled the covers up higher and dotted kisses all over his cheeks and forehead.


  1. THERE's a chapter of your book right there!

    This is a wonderful, poignant slice of your life with your sons. I absolutely must read more.

  2. Thanks for all the encouragement Elizabeth! It feels so good to putting these stories out there. You are right -- I just need to write the pieces and worry about the rest later.

  3. This is such a wonderful post! I agree with Elizabeth. This is definitely chapter material! ♥