by Beren deMoter
My six-year-old son would ride the short bus if I could trust him not to assassinate the driver due to a fail-ure to communicate. Parents of typical children might think I’m joking; the writers in this book know I’m not. My Baby Rides the Short Bus: The Unabashedly Hu-man Experience of Raising Kids with Disabilities, edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot, isn’t a collection of candy-coated pastiches of parenting challeng-ing children in middle-class America, with a guaranteed feel-good ending. It is a no-holds-barred line-up of true stories so honest it’ll make you cry, queasy and spit out your coffee with uncomfortable laughter. The phrase “paradigm shift-ing” wouldn’t be fulsome praise. This is no “Welcome to Holland”—the Emily Perl King-sley essay pushing parents to enjoy their life in an undiscov-ered country (Holland, with a special-needs child), instead of gnashing their teeth that they didn’t end up in Italy, as ex-pected, with a typically-developing child—an essay referred to as “fascist propaganda” by Dr. Mitzi Waltz in “A User’s Guide to Self-Help Literature (Or, Who’s the Real Expert Here, Anyway?”(306) My Baby Rides the Short Bus is in-stead a collection by parents already bucking the system in some way, whether political or economic, via sexual orienta-tion or age, disability or occupation.The editors met via an online bulletin board for “alterna-tive” activist parents, friends and mutual support before they discovered they had another thing in common: children with disabilities. Putting together the book, they found the perfect symbol for the blanket term “disability”—the short bus—then spot-lit the individual squares on that blanket with stories by parents of children with spina bifida, cri du chat syndrome, cerebral palsy, hemophilia, Down Syndrome, autism, Asperger’s, hearing impairment, birth injuries, epi-lepsy, schizoaffective disorder and enough co-morbid condi-tions to make any parent’s head spin and an IEP as thick as a phone book.
The crazy quilt of diagnoses is matched by the diversity of writ-ers; some the authors of mem-oirs—Robert Rummel-Hudson, Marcy Sheiner, Kerry Cohen, Kathy Bricetti, many contributors to ‘zines as diverse as Hip Mama, Slow Train, off our backs, Incoherent House, the Granny Chronicles and PEN, a quarterly pub-lication for the bleeding disorder com-munity, some new to writing. Some are PhDs, some stay-at-home parents, some stay-at-home parents with PhDs, combat boots and tattoos. They are writers who reject both social norms and the impossible-to-fill expectations for parents of special needs children, which are (to paraphrase Lisa Carver in her Introduction) 1. Unceasingly work to rid our “different” children of their difference so they can “fit in” via therapy, surgery, medication and aides, and 2. Smile and express gratitude for the challenge.But parents of children with dis-abilities aren’t always smiling about their “special angel children” (a term thrown at us by parents of typical chil-dren grateful they aren’t us, according to Carver).(vi) They’re mad—Ayun Halliday raging against her fallibility and the insurance system in “An In-advertently Compelling Argument for National Health Care in Five Mutually Incriminating Scenes”(86), they are sad—Andrea Winninghoff address-ing the moral dilemma of being the conduit of language for her deaf son Jonah—should she edit his language to make it more palatable to the recipient, without his knowledge? In “Interpret-ing the Signs” (129), and fed up—in Amy Saxon Bosworth’s hilarious “Jack-pot!” she gets snarky when her young-est son starts peeing on tires in public and toe licking:We have been told he has issues. Re-ally, you think? How exactly do you di-agnose toe licking? Is that on the perva-sive developmental disorder spectrum, the autism spectrum, or the going to grow up into a weird fetish spectrum? The kid sees anybody with bright shiny enameled toes and it’s all over. We go shopping and he has to be strapped in the basket and have something to dis-tract him. He wants to lick toes. Do they look like candy? PTA moms don’t think this is cute, nor does the librar-ian at the Comfort Public Library, nor the girl my son was trying to get a date with. I think she may have puked a little in her mouth.”(147) She gets exasperated about people messing with her and her three kids’ hearing aids, “If you come up behind me and touch my implants I may take you down. The same goes for my kids, their hearing aids are like body parts, keep your hands to yourself. Would you walk up to an amputee and twid-dle with his prosthetic?”(149)They are guilty; Christy Everett, in “A View Through the Woods”, writes, “I don’t always embrace this life of therapy visits, doctor lists, and enough paperwork to wallpaper every house on my street. Sometimes all the pudgy toddlers running around the mall make me mad. I find myself hating pregnant women, and driving my nails into my palms to keep from crying when friends with able-bodied children try to com-pare their challenges to mine.”(179)A common theme is the advice thrown, shoved and flogged against the backs of these parents. Caryn Mirriam-Goldberg writes in “Dragonflies and Inky Darkness”:“The advice rolls in regularly, the panacea of drug, alterna-tive, and other treatments. We try everything. We visit psychologists, shrinks, neurologists, nurse-practi-tioners, herbalists, massage therapists, homeopaths, social works, general prac-titioners, Asperger special-ists, occupational therapists.
The Ritalin, as well as some other drugs, make him violent and depressed.“You just have to realize,” says a friend of mine whose son suffered from severe learning differences all through his schooling, “that nothing will work. There is no magic pill.” There is no answer. But I can’t stop looking. Not when I tuck my kid in at night, and he says, “I’m just a bad person.”“No, you’re not. You’re a good per-son.”“That’s not true. Something is wrong with me.”But it’s not your fault, I want to scream into his bones. You did nothing to deserve this.(249)doing nothing is not an option. Doing everything isn’t human-ly possible. In her essay, “Our Closet,” Diana Robinson reminds all of us that “If it is sometimes hard to be a parent of a child with special needs, it is harder to actually be a child with special needs.”(259) And Stephanie Sleeper, in “Diagnosis Invisible” sums up what most of the parents (predomi-nantly moms, reflecting the higher percentage of women caring for spe-cial needs children) say about parent-ing their kids, “We are moms, we do what needs to be done, and we try not to end up hospitalized ourselves in the process.”(174) Instead we put our kids on the short bus, and go on with the day.