BOSTON — It is estimated that at least 12 percent of all children in the United States have disabilities or “special needs.”
For their parents, that often means a lifetime of working to get the appropriate care to meet those needs.
A new book tells that story from the parents’ perspective: “My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities.” It is a collection of essays about having a child with special needs.
Some of the writers were in Boston this weekend to read from the book. Listen to mothers Ziva Mann, Sharis Ingram and Stephanie Sleeper read excerpts from their essays. Select passages are below.
There are other kids in the pages of this book whose lives will probably be more difficult than (my son’s). Thinking about these kids is supposed to make me feel blessed or lucky. It doesn’t. It makes me feel rotten for thinking that life with him is so difficult, and it makes me feel angry that I’m supposed to believe special needs is a “gift”…
There is no aspect of our lives that this doesn’t affect… There are a million and one other things that we just do without even thinking about, because that’s how life is for us now. I told them, “I didn’t sign up for any of this when I got pregnant. I was just having a baby.”
“What’s normal?” We clotting moms ask each other. Is there a real, standardized concept that we can point to, and measure ourselves against? And if we can find this “normal” on a map, can we drive over and throw a brick through its window? I simply cannot understand how this “normal” is a useful concept for anything other than exaggerating how difficult difference can be.