The Advocate

The Advocate

         What was the hold up? The man with the newspaper glared at his watch. The woman with the hairnet nudged one of her kids to look out the window. “It’s some lady in a wheelchair,” the girl informed her mother, nose pressed against the smeared glass. The whole bus groaned. Bodies slumped in their seats as the lift unloaded its burden onto the back of the bus. Feet kicked at the floor impatiently while the driver strapped in his new passenger and collected her fare. As the bus sputtered away from the stop, angry looks were thrown at its rear.
         “Don’t they have shuttles for those people,” a steel-haired woman muttered.
The man behind the newspaper chuckled. Almost half the passengers exited at the next stop.
         “I guess they thought I was also blind, deaf and dumb,” said my friend as she recounted her “Day in a Wheelchair” experience in the City of Brotherly Love. As part of her thesis for her physical therapy doctorate she was required to act as if she had a disability for twelve hours. “I was actually afraid someone might strangle me for taking up an extra five minutes of their day!”
         My daughter will have to spend a lot longer than a day in a wheelchair. Right now, she’s only four years old, protected by family, friends, teachers and therapists who see beyond the cerebral palsy that contorts her back and legs. Whenever I roll her down the street to run our errands, the doting mom and her pretty little girl with the broken-toothed smile are greeted with smiles and waves. But how long will my daughter survive as an adult in a world that considers “those people” an inconvenience?
         The day Jessica was released from the hospital, 71 days after she was born, my husband and I gazed with shell-shocked wonder at the two steady eyes peering at us from inside a mound of blankets and wires. She was sent home weighing three pounds, a whopping two pounds heavier than her birth weight. One night alone with this baby in a separate room at the hospital was supposed to prepare us for the responsibility heretofore held by an efficient team of NICU doctors, nurses and continuously beeping machinery. Given nothing more than a stack of signed papers, a heart monitor and a list of doctor’s appointments as a confidence booster, I had no choice but to cling to the advice from a woman we spoke with for five minutes.
         “Be her advocate,” she said.
         At the time, I couldn’t truly grasp the tenor of this statement. Of course, we were going to do everything we could to take care of this child. I would take her to all her appointments with the pediatrician, neurologist, orthopedist, opthalmologist, gastroenterologist and cardiologist and follow their instructions. I would sign her up for occupational, physical, speech and educational therapy and keep one foot out of the bed and one ear open for any alarms screaming out in the middle of the night, warning us that she had stopped breathing or her heart had suddenly stopped pumping. Of course we would love her and be her advocate - she was our daughter. But even then I felt the foreboding of this social worker’s statement. "Advocate” sounded like more than simply being a good parent. The word curled out of her mouth in the form of “champion,” “defender,” “protector.” “Be her advocate,” pounded at my eardrums like a battle cry.
         Spring taps a defrosted finger against the van window as we steer toward another call-to-arms, this time at Jessica’s preschool. Easter Seals had been a welcome nest for us, a resting-place to be coddled until the time would come for our daughter to be hatched into public school Special Education. We had been warned about the school system by other parents with special needs children. I.E.Ps, essential progress reports for disabled kids, have been overlooked. Harried teachers in overcrowded integrated classrooms overlooked the children themselves. Then there was the matter of safety. Another incident was reported from Ohio of three teenaged boys taking advantage of a girl with disabilities behind the stage at their school. We share the same concerns as parents of “typical” children about growing school violence. But our fears are doubled. If an incident like Columbine or Red Lake should occur, how well could our daughter hide, or how fast would she be able to run with her wheelchair or walker? I began pooling information, even though Jessica won’t enter kindergarten for another year. We attended meetings for the district’s Special Education Council and made ourselves known to Jessica’s potential teachers. We listened to the breaking hearts of other parents as they watched their children, who were already destined to live a life separated from typical proms, dates, weddings and child-bearing, slip through the cracks split open for “underachievers,” “emotionally underdeveloped,” “developmentally delayed,” and other perpetrators who didn’t fit the public school mold. But while we were arming for this war, we overlooked the scuffle taking place right under our noses. The nurse at Easter Seals had called to tell us that Jessica had been bitten again. Even though Jessica was the victim, we were given the decision to remove her from the class and teachers she had known and loved for two years. “No fair! No fair!” a small but demanding voice growled inside my head after I discussed this with the preschool’s Program Director. Yet somehow we found ourselves driving midweek to visit Jessica’s new class environment.
         Through our journey as parents of those with special needs we have discovered many truly “Exceptional Parents.” One mother championed the rights of her hearing- impaired boys by first having speed bumps placed on their street to slow traffic, then pushing for a bill to require insurance companies to compensate for hearing aids. Another mother disgruntled by a middle school’s cookie cutter attitude toward her gifted son who happens to also have Attention Deficit Disorder, started a home-tutoring network with several other parents of the Sui Generis. I often get the feeling these strong women, friends of mine, treat me as an “Advocate-In-Training.”
         “You can’t expect everyone to like you,” admonishes one friend while I fret over phoning Jessica’s support coordinator about misappropriated funding for home adaptations.
         “Bone up on your nasty letter-writing skills,” advises another, after we found ourselves owing over sixteen hundred dollars for physical therapy that should have been covered by the county.
         I had avoided mentioning my latest dilemma to any of them, only to be derided by my thirteen-year-old stepdaughter. “Why does Jessica have to be the one to move to a different class? Why don’t you make them move that kid who keeps picking on her?”
         “It’s not that easy,” I said, brushing my hair next to her at the vanity. “Neither of them are typical children. Which means the county’s involved, and social workers and lots of red tape, and it’s near the end of the school year…”
“Sometimes I think you’re not aggressive enough,” she snapped back, dabbing peroxide-soaked swabs of cotton on bloodied knees and elbows from a biking accident. “And then people just crap all over you.”
         She sat quietly now in the back of the van as we made a final turn into the Easter Seals parking lot. I had assured her earlier, with the splay of authority that often recoils between parent and stepchild, that “maybe I didn’t carry brass knuckles in my pocket, but I put up plenty of fight when it came to my kids.” Did I really? I wondered as my feet swept aside discarded cones from the long-needled pines that drooped above the school. I’ve read enough magazine articles that dripped homage to the crusades of selfless parents who helped their children overcome grave mental and physical challenges. I’ve learned of even greater crusaders like Pearl S. Buck who rallied against an ignorant world to remove the stigma of bearing a mentally challenged child. How was I hired for this job? I asked myself as we solemnly filed through the glass doors and greeted the receptionist. There were far better candidates, action heroes who ran for class president or tied themselves to trees or traveled on missions to Sri Lanka. I was merely a survivor, a “B” parent bestowed a gift that should be rewarded to magna cum laude recipients.
         The Easter Seals Program Director walked us through a lobby that pummeled our eyes with brilliant pastels flung across a strung-up line of ordinary paper plates. We followed her down a hallway decorated with standers, walkers, adapted tricycles and other therapeutic equipment until we reached Jessica’s new classroom. Although “A Porcupine Named Fluffy” was being read for the tenth time to the group of five, each accompanied by a therapist or assistant teacher, the children sat transfixed on their modified chairs and benches. After the story, they took turns swinging on an indoor hammock fastened to the ceiling. I strained to hear the director’s whispers above the squeals. “How do you feel about this?” she asked. Before I could reply she added, “because we were very upset about having to move Jessica, and worried that she would think she was being punished for getting bitten.”
         “We were pretty upset too at first,” I said. I listened to my daughter’s laughter and shouts for “again!” as the hammock nonchalantly tossed her little body in the air. “But maybe this was a change she needed.” She would, after all, be moving on to a different school in another year. And maybe now was the time to start adjusting Jessica to the “Ebb and Flow” - the restless wave of people who touch a disabled person’s heart then scurry back out to the sea of their own typical lives.
         My husband told me once about the friends he left behind when we moved across the country to settle in Pennsylvania. The disabled couple had thanked my husband for his companionship. “It’s hard for us to keep friends. We can’t just meet someone for lunch. We have to hitch a ride not only for us but also for our wheelchairs. Everything we do takes extra effort. People get caught up in their own lives and it gets too difficult. We understand that. And we’ve learned to be grateful for every painstaking moment that someone has spent just to be with us.”
After the highest giggle and tightest clenched fist, the swinging stops. Jessica sees me and reaches out. I pull her into a hug, stiff, braced legs against mine, long graceful fingers grasping and yanking at my hair. She’ll be okay. She pushes away from me and points at a new friend – one who doesn’t bite and even shares peanut butter sandwiches cut in easy-to-grab strips. “Mami, go!” I return Jess to a teacher with waiting hands. On the way out we pass a room where a speech therapist signs to a small girl who sits cross-legged and watches with doleful eyes.
         “Where’s that girl who attacked Jessica?” asks my stepdaughter. She had been surprisingly subdued during the whole visit. “I want to see what she looks like.”
         “You just did,” said her dad.
         “Where?”
         “That room we just passed. She was sitting on the floor.” He smiled at his daughter’s baffled expression. “Did you think she was a monster?” If we’d have stomped our feet and written nasty letters with the attitude that everyone doesn’t have to like us, we probably would have got our way, and Jessica would have remained in her old classroom. But then that little girl, that “monster,” would likely have been shipped off to another preschool right before the end of the year; the school we highly regarded would have learned to deal with us in a guarded, unfriendly manner; and Jessica would not have experienced the pleasure of new friends, new teachers, or the renewed burst of energy that often comes with change.
         I am my daughter’s advocate. Pearl Buck, Pulitzer Prize winner, originator of The Welcome House adoption agency and child advocate, still admits in her book, The Child Who Never Grew, that the presence of her special needs daughter, Carol, became “unbearable” for her, and she suffered from an “inescapable sorrow that could never be assuaged.” I see this sentiment in well-meaning friends when I tell them about Jessica. The rise of their eyebrows, the wrangled sympathetic smile, both say we all have our crosses to bear.
         Sure, it’s not easy. But it’s not like that.
         Raising a daughter like Jessica is like waiting until sunset to gaze at the grand opening of the evening primrose. It’s like taking the extra effort to mix and knead bread dough, then anticipating that first piece spread with melted butter after enjoying an entire day of its slow-baked aroma. We feel blessed by this “stigma” imprecated on us. Others might get the chance to feel the same if, one day, they waited patiently for a young woman with a broken-toothed smile to enter a bus and maybe sent a friendly greeting her way, or even took her out to lunch.