A few weeks ago the U.S. Supreme Court ruled, in a case related to the education of children with disabilities (Winkelman v. Parma), that parents, rather than having to hire an attorney, may advocate for their children in a court of law. The decision was based on a recognition that the rights of the children and parents in these cases are “inextricably interwoven.” Unless you’ve been in the position of advocating for a child with disabilities, you cannot possibly grasp the enormous significance, not just of the decision, but of the reasoning behind it.
Considering the abuse that parents have suffered at the hands of professionals, the Court’s acknowledgment that our interests are congruent with those of our kids is quite a sea change. Far too often parents, especially mothers, were and still are seen by doctors, social workers and shrinks as an obstacle to be run over rather than an advocate there to help with the child’s development. Because we demand the best for our kids, we’re seen as impeding their jobs. It’s true that with a parent on alert, their job does become more difficult: they have to do more than the bare minimum.
But that’s not what I want to write about.
As most of my readers know, I’ve had a bit of experience as an advocate for a child—and now adult—with disabilities.
But that’s not what I want to write about either.
I want to write about my friend Christine. She’s been on my mind these past two weeks, while I’ve been going through a crisis with my son. Every time we have a medical or other kind of incident related to his disability, it’s Christine I feel connected to, want to talk to, call upon silently to get me through.
I didn’t know Christine when her son Billy began having seizures, but from her descriptions I feel almost as if I was there. She was living in New York City, the Village I think, a single mother of two—Gina was five or six, Billy two. She was a beatnik morphing into a hippie at the time; they were walking down the street, and Billy, like any two-year-old insistent on walking by himself, lagged behind. Christine turned around to see if he was all right—and saw him lying on the sidewalk having a grand mal seizure.
Theoretically, seizures themselves are not harmful. Theoretically, a person can have a grand mal seizure and get up a few minutes later, dazed and confused, but still functional. To anyone watching, however, a grand mal seizure is terrifying: in a typical incident the body jack-knifes repeatedly, and the arms and legs stiffen and make scissoring motions. The person loses consciousness; the eyes close, the mouth opens, the tongue sometimes hangs out. In days of yore the big fear was of the tongue falling back and blocking the airways, so people used to stick things into the seizing person’s mouth as prevention. After several decades of broken teeth, bitten fingers and near strangulation from pieces of cloth or wooden spoons, medical advice changed: now we’re supposed to gently move the seizing person onto his or her side so gravity can help the tongue fall forward.
On that day of Billy’s first seizure, Christine wasn’t aware of any of this. It must have looked like her baby boy, lying in the middle of a Manhattan sidewalk violently shaking, was dying. It marked the beginning of a life spent among doctors, social workers, physical therapists, speech therapists, emergency rooms, and special education. Most people take family privacy for granted, and don’t realize that one of the most oppressive aspects of disability is the loss of this privacy. When you have a child with so many needs, your life is open to the kind of scrutiny that few lives can withstand. Your habits and parenting practices, from diet to discipline, get poked and prodded by strangers with Ph.D.s. It being human nature to at least comment on what’s being scrutinized, parents of disabled kids are subject to an inordinate amount of criticism and advice, much of it contradictory. The effect on many parents is an erosion of self-confidence, insecurity, and free-floating paranoia.
But I digress.
After that first incident, Billy’s seizures kept coming. It happens sometimes that of the many toxic medications devised to control seizures none do the job; unfortunately, Billy was one on whom they failed to work. Medications were tried and their side effects endured, without much success. Throughout his life Billy went through periods of greater or lesser seizure activity—but he was never seizure free for any length of time. While an occasional seizure may not do much harm, these relentless shocks to the brain exert a heavy toll: Billy lost any speech he’d developed, and eventually lost the ability to walk unassisted or care for himself on a basic level, and was diagnosed as mentally retarded (the current P.C. term is “developmentally disabled.”)
Christine tried everything. She investigated expensive private schools, alternative teaching methods, biofeedback and nutrition. For several years Billy was given daily physical therapy by a team of volunteers, most of them friends and family. Short of lobotomy—which is one treatment in use today for seizures—she considered everything. She saw improvements when nobody else did, and spoke of a future for Billy that nobody else believed possible. While the rest of us found alternative ways to communicate with Billy, Christine claimed to understand his various sounds. He’d say something like “L’Ha!” and she’d reply, “No Billy, we can’t go fishing today.”
Fishing. Yes, Christine took Billy fishing in nearby streams and rivers; once they even went out on a deep-sea fishing boat. She also took him on beach vacations, city weekends, and to carnivals, street fairs and festivals. In the small town where we lived, a community event would not have been the same without the familiar sight of Billy in his football helmet, leaning on and eventually towering over Christine, who’d make sure nothing exciting or interesting escaped Billy’s notice. Under her tutelage he became a rock fan to rival Jack Black in School of Rock—he owns a staggering number of stereo parts; discarded amps and speakers somehow always end up in Christine’s living room. Together they’d play the Rolling Stones or the Cars, the volume turned up full blast. As we’d approach the Tappan Zee Bridge on the drive into New York, Christine would be sure something wonderful was on the tape deck. Crossing the bridge on a sunny morning with Billy, Rod Stewart raised to maximum volume, was one of the peak experiences of my life.
I don’t mean to be sentimental, but peak experiences do seem to occur around Billy: his joy is infectious. When the phenomenon We Are the World hit the airways, I videotaped it. Billy sat cross-legged on the floor in front of the television, and as each performer appeared—Stevie Wonder, Bruce Springsteen, Bob Dylan—he let out an ecstatic howl. He knew all of them by their music; now he pointed at the screen, barely able to contain his pleasure, rocking back and forth. Another peak experience.
Christine was the only mother of a child with disabilities I knew, and we became close friends. Most of the people in our circle were former hippies turned New Age-ish entrepreneurs, and the issues in their lives were rather different than ours. She was and is the only person for whom I would, and did, do anything, no questions asked. She’s the only person I know intimately to whom I don’t have to explain things: she understands–rather, she knows–me and our family dynamics. She’s the only friend I’ve had who never once said anything insulting or offensive to me regarding motherhood or the way I raised my kids. Most important, when the shit hits the fan and I feel like collapsing into bed and never getting up again, I have only to think of Christine and my problems pale in comparison. When I feel like screaming at my son, or being less than loving towards him, I have only to picture Christine and Billy to change my mindset. Watching her all these years has shown me what real strength and courage look like.
I used to tell her she was a saint—which made her crazy. She taught me it isn’t saintly to take care of someone you love, and when I imbued her with unearthly qualities I separated myself from her. This I understood: when my son was an infant, other mothers would bounce their healthy babies on their laps and tell me “I could never do what you’re doing.” What I heard was: I’m not like you. My baby isn’t like yours. You’re not normal. I knew even then that any chance occurrence could push them into my situation, and that they’d endure, just like me. What choice did I or Christine have?
Billy no longer takes road trips, or sits on the floor watching rock videos—in fact, he doesn’t even sit. For the past few years he’s been confined to a hospital bed in Christine’s living room, fed via tube. After the events leading to his present condition, Christine had to fight like hell to get the hospital to let her take him home rather than putting him into a nursing facility. She learned how to operate his ventilator, and she obtained round-the-clock nursing care, yet even when she met hospital regulations, she had to go to court for the right to take him home. A lot of people, myself included, might not have done it at all: we might not have wanted someone who requires so much care lying in our living rooms. Christine hardly gets a break, rarely even leaves the house these days. Yet she’d rather have Billy home, where he can see family and friends and receive mental and emotional stimulation, than shut up in a facility with other sick people. She’d rather deal with the tedium and difficulty of caring for him than with the depression, guilt and anxiety she’d have were he in an institution. It was the same story during Billy’s adolescence, when he went to live in a nearby group home on the advice of professionals. For the few years he lived there, Christine worried constantly, and she fought endlessly to get more flair and color into Billy’s life than the home provided.
Christine’s done more fighting on behalf of Billy than anyone should have to do in a lifetime. She’s been so insistent on getting him what she believes he needs rather than the bare minimum the county or state deems adequate that she’s widely regarded as a troublemaker (for which I suspect she’s proud). Until Billy was almost grown, she was alone in this struggle, but in the 80s parents of children with disabilities rose up en masse, educated themselves, and banded together to demand rights for their kids, as well as a few things that might be seen as privileges. This unsentimental and assertive parental movement has been responsible for changes in legislation, education, attitude and accommodations for children with disabilities.
When I told Christine about the Winkleman decision and its wording, she reacted exactly as I knew she would: she gasped and giggled—she has the most endearing giggle—when I said “inextricably interwoven.” With those words the Supreme Court acknowledged an essential fact of life among families with disabilities, one that’s been previously ignored and even maligned: the welfare of the parent of a child with a disability depends on the welfare of the child, and vice versa.
And that’s why mothers of kids with disabilities aren’t saints, or even particularly admirable for doing what we do. It’s why Christine puts so much energy into keeping Billy happy. Ultimately it comes down to selfishness, or rather, self-preservation. To quote a character on Law and Order, You’re only as happy as your unhappiest kid.