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Thursday, February 2, 2012

What if I knew from the start?

I just finished a book I really liked---"The Year My Son and I Were Born" by Kathryn Lynard Soper. It was about the first year of her son's life. He has Down Syndrome, and she wrote so honestly that it was truly moving. She had a very hard time dealing with the diagnosis, and depression partly resulting from it. One point she made that really hit me was about decision making---how if you make a decision about your child based on what you know at that time, and using the facts and your emotions and your knowledge of your child, even if it later turns out it was the wrong decision, you can't regret that, because it was the right decision for you when you made it. In other words, second-guessing is a useless emotion. I need to keep that in mind---that's powerful stuff.

The other big thought the book set off in me was wondering what it would have been like to know from the time of Janey's birth that she had autism. How would that change things? Would it have been better, or worse? I can think of things both ways. It would have been heartbreaking, and I think it would have made the first year a lot harder, as I would have been dealing with a lot of emotions at the same time I was just trying to get through that first year of babyhood, which is hard in any case at all. But I could have started sooner with any kind of early intervention for autism, which might have helped (and might not have helped). If Janey's development had been the same as it actually was, except I knew she was going to regress, it would have been heartbreaking in a way to watch her talk in ways I would have known she'd never maybe talk again. I think a lot about a doctor's appointment when Janey was just turning two. She had it along with Freddy, since they have the same birthday. It was Freddy's turn first, and Janey spent his whole appointment trying to catch our pediatrician's eyes and connect and flirt with him in that two year old way, and at one point he said "Well, at least we can say she's not on the autistic spectrum!". I can't think of that moment, ever, without crying. He was looking for signs she was, due to my older son William at one point being diagnosed as on the spectrum, and even LOOKING for signs, he didn't see any. And about a year and a half later, no-one would be able to look at Janey and NOT see she was autistic. So maybe ignorance was bliss in those early years. We worried a lot about her, but it was because she wasn't walking. You can see it in pictures of her---you can almost see the month she started showing the signs. Her eyes change. Like my eyes are changing right now from my tears.

Janey is doing very, very well the last few days. She is doing some fantastic talking, and greeting of people, and connections. I should be writing about that. And I will. But right now, I think I'll take a little nap. I need it.

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