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Monday, September 26, 2005

Autism Book

I recently finished reading Making Peace with Autism by Susan Senator-- a wonderful book about one family's experiences raising an autistic child. Sue and her husband Ned are good friends of mine. Because of this, I read this book on a number of levels.

A beautifully and sensitively written account of the day-to-day challenges involved in raising a disabled child. It's also a great resource for parents of autistic children or for those who may yet have an autistic child or a child with any disability for that matter. Sue is very open about the stress she endured and continues to endure because of these challenges. But she tempers that with advice on how to deal with various situations that family's might encounter.

Reading a book that details the lives of people you actually know can be a bit unsettling. I'm ashamed to say that there are things I didn't know about Ned and Sue that I learned only by reading this book. I remember getting to a certain chapter and saying to myself, "Oh, here's where I first got to know Ned and Sue", only to realize that I didn't know half of what was going on in their lives at that time and later. Sue writes about a period during which their son Nat was suffering from a sleep disorder which caused the rest of the family to lose sleep. I can remember thinking on a number of occasions that Ned looked very tired. But I had just assumed that he had been up late writing code (Ned is a software engineer who absolutely loves to write code).

I never realized the challenges with which Ned and Sue were confronted on a day-to-day basis. At work, Ned always seemed in command and able to concentrate completely on his job. On the occasions I was invited to their home, Sue always seemed more concerned about her guests than any behavioral problems Nat might exhibit. I remember thinking that Nat's excellent behavior must be due to some real effort on Ned and Sue's part and some excellent educational programs they must have found for Nat. But this book really opened my eyes to the amount of effort they had to expend to achieve this and the difficulty in finding the right programs for Nat.

As an aside, I always knew that Ned was a real family man and so I'd like to relate a story about Ned that didn't appear in the book and maybe even Sue doesn't know.

Ned and I worked at a company called Iris Associates ( the makers of Lotus Notes) which was a division of Lotus Development. Every January, Lotus would hold a big conference called LotusSphere which took place at Disney World. That particular year, we were all given Motorola text pagers that we could use to send messags and receive email. These pagers ended up becoming very useful in setting up various extracurricular activities during the week. On the last day of this conference, a number of us happened to have some free time so we rented these little motorboats that you could putt around the lake in. We were all having a great time except for Ned. One of Ned's kids (I don't remember which one) had come down with a fever and Ned was pretty upset about it. He really wanted to be home with his family instead of in a tiny boat at Disney World. But then Ned received an email from Sue on his pager. His son's fever had broken and everything was OK. Ned's whole face brightened and he ended up having a lot of fun for the rest of the day. That's the kind of caring family man Ned is.

Making Peace with Autism is just a beautiful book both in style and in Sue's honesty and her sincere desire to improve the lives of autistic individuals and their families. I highly recommend it even even for those who are not raising a child with disabilities.

Comments:
Thanks, Brian!

Having the book read by people who know me is a little unsettling too. Like when I told you some story or other, and at the end of it, you said, "Yeah, Sue told it better"! :-)
 
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