Over bowls of chips and salsa, “the queen mother” quietly recommended that I read this book. A year went by and over some other assortment of waist-widening grub–a buffet spread prepared by one of our sister Mothers From Hell, the queen mother, our dear leader, again suggested I read this book. Another year or two went by, with perhaps another earnest urge to pick up this book and then finally, the queen mother shoved the book into my hand. And then. It sat on a book shelf for another year. When my new life soon turned upside down, it was packed and moved. Only to sit on another shelf almost another two years. Finally, in my new home this past fall, it was unpacked and moved up the ranks of my books with a higher intent to actually read them. And then, this year, I opened the cover and began to read it. OMG. Now I get it.
My Baby Rides the Short Bus, The Unabashedly Human Experience of Raising Kids with Disabilities is hands-down the most candid, side-splitting, irreverent must read–if you are not easily offended and are able to be very open–book on special needs parenting, ever! Published by PM Press, and edited by three mothers of children with disAbilities, My Baby Rides the Short Bus is a compilation of essays by mothers and fathers who take pride in being alternative in a largely straight up culture. On top of being take-your-pick earth mothers, liberals, hippies, lesbians, adoptive parents, homeschoolers and any other assortment of alternative that one can be, these loving out-there mothers and fathers are also different in that their children were born with special needs. If you’re a prude, don’t go there. But then, you probably wouldn’t be reading this blog, unless you are an open-minded prude. Maybe. (I love you anyway and thank you for reading, dears.)
How many books that aren’t text books or self-help, that are actually engrossing, come-lose-yourself-within-my-pages-delicious–actually leave the reader a bit wiser? I have ended essays in this book with a weeping heart, having spent an evening or two or three’s before-bed living the manic trauma of a medically driven life of a child and a family with severe physical needs. I had awakened moved, after reading before I dozed off, and in greater appreciation of what a life so complicated must be like for my sisters who bore children who are medically fragile. I read mothers writing about the topics I write about here in “The Journey with Grace.” An essay on Aspergers actually taught me some things about my child’s spectrum disorder that, as a veteran autism speaker-advocate-educator myself, I did not know. Closing the covers with the completion of the final essay, I lived in community with these mothers and I look to my own story and questioned how candid I am actually being. The world needs to hear these clarion call voices. Their stories inspired this blog post.
I could easily compose three more posts with excerpts of the many dog-eared pages. I finally gave up dog-earing. Each night I was frustrated that I had still never unpacked my stash of highlighters to mark yet another resonant passage. The women and their editors covered it all with funny-bone tickling chapter titles such as “The Other Combat Boot Drops,” “Enough Acroymns to Make Your Head Spin: Navigating the System & Advocating for Our Kids,” and “Families: When the Balancing Act Induces Vertigo.” I’ll end here with this excerpt that I recently shared to a sophomore class of medical students at Meharry Medical College to set the stage for my presentation about our own lives on the perilous precipice of autism adulthood.
From an essay by Nina Packebush–a mother of three “special” children, entitled “And We Survive”:
“Throughout my twenty-two years as a parent, I have been a ‘saint’ an ‘angel,’ ‘brave,” and a ‘hero.’ I have had the ‘patience of Mother Theresa’ and the ‘stamina of an Olympic runner.” People have been in awe of me and haven’t hesitated to tell me so…at least when my kinds were young. You see, the thing about having these special children is that people love the idea of families overcoming their challenges and going on to conquer the world. They love to hear how Mom sat on the floor, rocking back and forth for five straight years, until she finally reached her severely autistic child and brought her back into the world. They love the story of the child with severe learning disabilities that worked hard, whose parents never gave up on him, and he became a millionaire despite being unable to spell or read. They love those Oprah stories in which the underdog succeeds against all odds. What they don’t like, however, is when the underdog remains the underdog and the cute little toddler becomes a loud, socially awkward, slightly odd child or teen who will never give friends and family the bragging rights that they feel they deserve. When our special children are young it is easy for people around us to flaunt us a ‘amazing.’ As our children age, however, people start to get a little uncomfortable.”
Wow.
