My Baby Rides the Short Bus
We must do everything we can to help our children to change what is different about them, make it *undifferent*, so they can integrate, so they can be as normal as possible.... We must reprogram our children, go against their nature, go against nature itself. Constantly. It would be considered emotional abuse to do that to a "normal" child, to tell them every day in many ways they cannot be who they are. (Lisa Carver, p.x)There's no understanding us, the parents of kids with special needs children -- parents of children with special needs -- parents with special needs with children.
Lisa Carver's comment above, though, I may end up tattooing down my forearm, because those words generated the most visceral agreement I've felt with parental writing in years. Our co-parenting journey with medical professionals can often be tantamount to persistent emotional abuse, and we all know that, all of us. But I'm not sure I've ever seen it written as clearly as that before.
All things considered, My Baby Rides the Short Bus, a collection co-edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot, is the most helpful and community-minded book I've ever read about special-needs parenting.
Me, I read about this stuff because I need to know our family isn't alone. Not every allegedly relevant book offers much in the way of help. This one, though, kept arresting me enough that I had no choice but to put it down for a little while in order just to think and feel. (And I usually put down parenting books in frustration, maybe even rage!)
I think it's a very good sign when a book makes me tear up, even when prickly tear ducts are also a reliable indicator of looming burnout, and this book caught me out several times.
For example, I take education very, very seriously: this is an occupational hazard for an English professor, I know, but I still want my kid to be doing academic work. None of us are able to appreciate the limits or extents of her abilities, though, and so sometimes we're operating on faith that the pressure she's being subjected to will be worth it, in the end. Heather Newman's there to help out, with her ideas about unschooling:
We don't believe that his happiness should be sacrificed to learn what would amount to a party trick. (p.83)What if education isn't an unalloyed good? What if our children aren't learning a healthy discipline, or something else we can rationalize as a social good, during those times when they're not able to learn the content of a lesson in any meaningful way, and instead are mostly suffering?
What am I doing to my child, when I insist that she go to school and do her best, while failing regardless, to learn geography, or addition, or the passage of time?
Seriously: what am I doing to her?
Or another regular fear, about how one faces the day. This book offers plenty of righteous, valuable anger over being told "I don't know how you do it" or "You're such a terrific parent!", and that's an important affirmation.
One of the prizes for me in this book was a quiet confession from Megan Raines Wingert, which I think is something every special-needs parent needs to have someone share:
I never anticipated the guilt I would feel over the days I dreaded hearing his voice in the morning, signalling a new day of struggling to retain my sanity and not ruin this little boy. (p.153)The days are hard. And we make it through them, somehow, almost always. There isn't necessarily more to it than that, except to remember that sometimes, we can't make it through on our own, and maybe we can't make it through at all.
Which brings up the giant problem of, simply, seeking help. Jennifer Byde Myers recounts some of her failed attempts at finding someone who could be with her child, including a Craigslist ad that generated troll-level online comments. After detailing these struggles, she concludes her essay with an imaginary Craigslist ad that sums up the minimum standards we're all trying to meet:
This is it. This is all I really need.This book made me cry, I'm pleased to say. Many parents of special-needs kids who've read this far will recognize this as the highest praise possible, for a book of this type. I'm grateful to the editors, Yantra Bertelli, Jennifer Silverman, and Sarah Talbot, for My Baby Rides the Short Bus; to the driver of my daughter's short bus, and the teachers to whom she's delivered; and grudgingly to my colleague and friend who exercised my tear ducts via the useful torment of this book.
Show up on time.
Make sure my kid doesn't catch fire.
Please, please don't make me cry. (p.226)
My Baby Rides the Short Bus is a book to be shared, and I'm buying my own copy so that I can do just that.