Saturday, January 21, 2006

Making Peace with Autism

I just finished Susan Senator's book Making Peace with Autism. I feel like I've gotten to "know" Susan a bit over the past few months, through the insightful posts on her website and blog and through her warm, supportive comments on my blog and others. As I expected, in her book as in the blogosphere she is thoughtful and engaging; but what really struck me about her most as I read chapter after chapter was just how honest she is.

In Making Peace with Autism, Susan invites us into the most private parts of her mind, her heart, and her family as she explores the effect that her oldest son Nat's autism has had on her, her marriage to Ned, and their family life with younger sons Max and Ben. She tells it all just as it happened, without euphemism and without gloss: her fears, her mistakes, her challenges, her anger. She gives voice to the feelings that so many parents of children on the spectrum must have, but are afraid to express because of how they might look to others: feelings of anger, grief, desperation, and hopelessness, all topped with a heavy dose of guilt for having those feelings in the first place (or, as Susan puts it, "feeling bad about feeling bad.") Susan's message comes through clearly: you can be angry and fearful and grief-stricken and desperate and still love your child with all your heart, still be a phenomenal parent.

Nat's autism manifests in very different ways from Bud's and many of the things that Susan has had to manage - aggressive behavior, uncontrollable tantrums, tutors and educators who refuse to work with Nat, and even violence - are not in my experience. I found myself thinking over and over, "this is one penguin who had to walk 70 miles AND confront a seal AND battle a predatory bird, and lived to write about it." It would be a valuable book if it were simply a memoir; however, Susan takes it a step further and provides sidebar information in a sort of "what I know now that I wish I knew then" way. She gives suggestions about very specific issues - preparing for an IEP meeting, deciding whether or not to use medication, surviving beach vacations, getting through the hard and hopeless days - not from the perspective of an expert, but from the perspective of a friend who has been there, has the benefit of hindsight, and is willing not only to spotlight and celebrate her successes, but also to expose and explore her mistakes.

And that is a very rare gift.


themomnextdoor said...

I happened upon your blog and I'm definitely going to pick up Susans book. I'm a teacher and I work with students with various developmental issues. I chuckled at your name (mom-not otherwise specified) :) - and I know how difficult it is to be a parent - even more so (I can only imagine) with a child with disabilities. I always, always, always tell my staff (instructional aides, student teachers, etc.) I NEVER want to hear you talk about families and/or their problems. I can only imagine how difficult and heartbreaking it is to parent 24/7 to a child with special needs. I have worked with the sweetest children on the spectrum and I have worked with students who tantrum, hit, kick, scream, and bang their heads on anything they can find. Through it all the BEST source of learning that I have found is parents and caregivers. They provide an insight that I can never learn from a book. Thanks for sharing.

MothersVox said...

Just a note to Mom Next Door . . . as you read around in our blogs you'll see that it isn't always "difficult and heartbreaking" . . . ;)

And thanks, MOM-NOS, for the review of Susan's book. I can't wait to read it!

Anonymous said...

I read Susan's book a few months ago and ended up buying a copy for all of my teaching assistants. I teach students who have autism and I typically shy away from recommending books related to autism. However, I would not hesitate to recommed MPWA to anyone. I could not have said it better than you did in your review!

I recently picked up a copy of Michael Blastland's "The Only Boy in the World" another very well written, thought provoking and honest book. I am about halfway through it and find it amazing!

BTW -I love reading your blog!Your stories about Bud provide me with a lot of insight regarding my students. Bud shares a lot of the same interests as my students (grades K-1)especially the interest in some of the televison shows PBS (telletubbies) and Noggin etc...

Thank you for sharing!


Anonymous said...

Just realized that I posted a comment to a blog you wrote a year ago! Woops! I am still getting used to being in 2007!