Most people just don’t get it right. When they write for us, about us, or to us. When it comes to others’ view of our lives in families with special needs, I’ve never seen anyone show it like it really is.*
The lack of realism, empathy (and appropriate gallows humor) is partly why I’m writing a book for special needs parents right now. It’s certainly why I’ve plowed through over 25 other titles in my research. Unbelievably, the first mainstream book I’ve found that nails what life is like as parents of a special needs child is a novel – House Rules by Jodi Picoult (Washington Square Press, 2010).
It’s like she’s inside us. Even though not all of us here are raising kids with Asperger’s. The main character is a single mom of two teen boys, and the emotions, thoughts, joys and fears she reveals in this character will blow you away. You may even drag out the reading of the book because it will be that hard to leave behind your new best friend.
Here’s a snippet of the kinds of things this mom says in the book:
“Of course I love my son. Of course I would never want a life without him. But that doesn’t mean that I’m an not exhausted every minute of the day. That I don’t worry about his future, and my lack of one. That sometimes, before I can catch myself, I imagine what my life would have been like if Jacob did not have Asperger’s. That – like Atlas – I think just for once it would be nice to have someone else bear the weight of my family’s world on his shoulders, instead of me” (p. 225).
“Isolation. A fixation on one particular subject. An inability to connect socially. [My son] was the one diagnosed, but I might as well have Asperger’s too” (p. 42).
“Instead of dreaming a miracle, you learn to make your own” (p. 439).
Are you hearing yourself in there too?
The second quote leaped from the page the day I read it. I’d just returned from a weekend of extended family events with high expectations on me and the kids. We generally run the opposite direction from those events, but since it was my little brother’s wedding, that wasn’t really an option. After 2 solid days of keeping my 9 year old’s tics, mood swings, and impulsivity at bay, exhausted was an understatement. I stepped back at one point, in the middle of railing on my husband for something inane, and realized that if someone shoved a mirror in front of me just then, I’d be sure it was my daughter’s reflection in it!
And the first and last quotes resonate just about every day of my life in this family.
The resonating isn’t where the enjoyment ends, either. Jodi Picoult wrote other titles you might have heard of: My Sister’s Keeper, Keeping Faith, and about 16 others. She’s an amazing writer and the plots are so complex! It was complete entertainment mixed with a sense of being known and understood.
I know none of us have a spare moment to be reading fiction in our busy lives. But if you need a mental health break in the midst of it all, I think you’d love this book!
What are you reading lately?
*(Well, that’s almost true. For adoption/attachment issues, the other most-realistic-book award goes to Daniel Hughes’ Building Bonds of Attachment. But that’s a pretty specific special needs niche!)