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My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities
By Yantra Bertelli, Jennifer Silverman, Sarah Talbot
PM PressCopyright © 2009 Yantra Bertelli Jennifer Silverman and Sarah Talbot
All rights reserved.
The Other Combat Boot Drops
"There's something wrong ..." Three words that no parent wants to hear regarding their child.
Some of us knew it during pregnancy. Others found out at birth, during an adoption process, or months or even years later. For some of us, the process is ongoing. All of us find ourselves parents to kids with "special needs." Regardless of when we learned about these "special needs," most of us went through the same emotions trying to process the information: fear, confusion, anger, sadness, and hope. We met clueless (and some helpful) doctors, trudged through mountains of books, and turned to the Internet. We found some — but definitely not all — of the answers we were searching for. In the process we found our voices, symbolically put on our combat boots, and channeled our inner mama and papa bears to become advocates. But the learning curve has been steep, demanding, and often isolating.
With the exception of our one Canadian author, these writers joined the parents of the reported 17 percent of children in the United States with special needs. Marginalized by their own disabilities, liberal parenting philosophies, anti-consumerist lifestyles, and interests that set them outside conventional culture, many of these parents found it harder to be taken seriously by the professionals leading them through the diagnosis process.
The children of the parents in this chapter span eventual diagnoses from cri du chat syndrome to autism. Along the way, their parents learned as much about their kids' conditions as the "experts" — and became the best experts possible on their own kids. Their stories here and throughout the book are alternately funny, challenging, triggering, and sobering. The humor and honesty in these tales of parents living on the margins and learning about their child's special needs sets them apart from the status quo.
by Emily Zolten
I have heard new mothers say time after time that they felt like they were reborn on the day that their babies were born. This has been true for me after the births of all three of my daughters. What was unexpected was the version of myself that would emerge after the birth of Lucy.
I had experienced labor twice before and so I thought that I knew exactly how I gave birth. That's why I was so surprised when my water broke late in the evening three weeks before my due date. My water did not break with my other children until right before they were born. There were many things about this pregnancy that were different and it was hard not feeling like something was wrong. As a midwife, I saw this all the time — women having their third baby and feeling like they had been so lucky before that their number was surely up. Things were bound to go wrong this time.
When my water broke, I jumped up from the couch in shock. I realized what this all meant, how things would change for me, and the pain that was about to begin. I told my husband and my daughters what was happening and what to expect. They were all so excited. We cuddled up with a book about having a new baby sibling and read our bedtime story. We all knew, but no one said, that this was the last time we would be this family of four sitting here together.
I woke up in the morning surprised that labor hadn't started yet. The kids got dressed and we headed out for a walk. It was the perfect Vermont spring day. The dirt road was a combination of hardened mud and hollowed out gravel filled with puddles. The air was heavy with mist. I walked while doing nipple stimulation to bring on labor, waving at my neighbors, and laughing as they looked at me with raised eyebrows. I knew that this walk we were taking together would bring us our new baby. As we reached the top of our unbelievably steep driveway, I knew that there was no turning back. I walked into the house, threw off my clothes, and got in the shower. I did a dance between inviting in the pain and trying to back away from it. It was time to call Gabe, my husband, home from his trip to the supermarket.
Shortly after labor had gotten serious, I knew that it would soon be over. I lay in the 250-gallon horse-watering trough that sat in my living room filled with warm water. It was a gray day outside the windows and my daughters hung on the sides of the tub encouraging me. I reached down and felt her head pushing into my palm. The baby and I began the work together as a team.
When Lucy was born I immediately noted her small size (5lbs 14oz) and her even smaller voice. She sounded just like a baby kitten. She had a herniated umbilical cord. Her ears were slightly low set, but barely. I had seen so many newborn babies in my experience as a midwife and I knew that there were things about Lucy that were different, but I explained away these things by her early arrival. It wasn't until the day the geneticist handed me the lab results that I knew how truly unique this little girl was. We had hit the genetic lottery. Lucy had a syndrome that occurs once in every 50,000 times a baby is born. The funny thing was, when the proof was there that something about her was unusual, it struck me that she was the same baby that I had been holding five minutes earlier when there was no diagnosis.
In that moment, I knew and continue to learn every day, that I am a different mother than I ever thought that I would be. Some days I am a better mother than I was before: I participate so fully in Lucy's therapy, I make excellent lunches for my other children, and we talk about all of our feelings and about Lucy's disability in such a mature way. Other days, I snap at my girls for the simplest of things because I am over-tired from not sleeping for nearly three years and my shoulder is bruised from Lucy banging her head all night. I snap at Lucy for banging her head, despite the fact that I know she would stop if she could. Sometimes I am not completely compliant with the things that the specialists and doctors have told me to do with Lucy. She refuses to wear her glasses, and I don't force her to. Lucy does not wear her orthotics for the entirety of her day. I love babies with bare feet. Worst of all, after years of making parenting choices that seemed so in line with nature and how I thought natural parenting was supposed to happen, I have made the decision to medicate my toddler so that she might sleep for even a few consecutive hours at night.
I am a mother who knows that each one of my children will have her own story. I know that all of the things I have hoped for them are only in my imagination, they will be exactly who they are meant to be. I often remember that moment when I was pushing Lucy out into the warm water of the birth tub, when we were working together, just like we do now. We teach her how to walk, albeit more slowly than I have ever done it before and with much more outside help than I ever thought was needed. At the same time, I am learning how to walk in the shoes of a parent who has a child with special needs; this also takes patience and the skill of fighting for your child without stepping on anyone's toes.
I am still learning who Lucy's mother is, which version of myself was born that day when she entered the water and pushed herself into my hands. I know now that the phrase "expecting a baby" is absolutely right in its sentiment. Expecting something is all you really are doing as a parent. You imagine the baby that you will have and all of the things that this child will do in his or her life, but those things are not real. When parents receive a diagnosis for their child there is often a lot of grief that follows, but what are you really grieving? The sense of loss is for something that never was, it existed as an illusion. When babies are born they come with their own story, and everyone faces some sort of trouble during their lifetime. Some of us come with our troubles right on the surface at birth. The important moments arrive when parents decide what to do next.
I have learned a lot about what I don't know. I don't know where Lucy will end up for preschool and how her classmates will receive her. I have learned that I will probably find defeat in the Individualized Education Program process numerous times before I learn the ropes and how to fight. I have learned to not to scream "Fuck you!" every time I open a condolence card or hear "I'm so sorry." I have learned not to say "Good thing for you that you were lucky enough to have all of your children born healthy and 'normal'" every time someone tries to say "Special kids get special parents." There is nothing special about me. I challenge people who say this to think about what they would do. Would they really just quit? Of course not, they would get up the next morning and feed their kid breakfast, if they were lucky enough to have a kid who could eat by mouth without a feeding tube, and they would go to therapy appointments, and they would do their best to parent even when they were at the end of their rope.
I have learned to be a fierce and strong advocate for my child, to have all of the uncomfortable conversations that I never want to have. I have learned to be charming and sweet while demanding not only what I want, but also what Lucy is due. I have learned to work hard with her and seize every moment of these immensely important formative years. I have learned that some of the things that seemed important to me before are so easily moved to the back burner now. Why not change careers at the age of thirty? Most importantly, though, I have learned to enjoy her, to let her just be a kid, and to help her achieve her maximum potential.
A Bus(wo)man's Holiday
by Kathy Bricetti
Busman's holiday — noun: a vacation or day off from work spent in an activity closely resembling one's work, as a bus driver taking a long drive.
On my first car, a bile-colored Datsun Honeybee, I stuck a bumper sticker that read: I'D RATHER BE STIMMING. I loved it for its obtuseness, for the private joke. Stimming is what autistic kids do: hand flapping, head banging, humming or laughing, finger twiddling, spinning toys, and waving a piece of yarn in front of one's face. One day, I stopped at a red light, and a guy on a motorcycle pulled up next to me. Over the drone of his engine he shouted, "What's stimming?" I wasn't sure how to answer in the time before the light changed. "Self-stimulation!" I shouted across the lane as the light turned green. "Well, all right!" he said, nodding a couple of times and speeding away.
Around that time, I volunteered at a Saturday recreation program for autistic kids in San Francisco. We took them to the zoo, to the beach, to the snow one winter. I knew nothing about special education, goals, performance measures, testing, IEP meetings, or school psychologists. I wanted to be a teacher. My favorite book in college was Virginia Axline's Dibs in Search of Self, and I, too, wanted to cure children lost inside themselves.
Before I became a mother, I was a school psychologist. I tested deaf kids. I tested hearing kids. I tested kids with learning disabilities. I tested kids with emotional disabilities. I tested poor kids. I tested rich kids. I tested retarded kids. I tested kids with IQs in the 120s and a couple in the 130s. I tested kids in overheated, windowless rooms. I tested kids in the janitor's closet. I drove from school to school to school to school, my test kits in the trunk of my Datsun Honeybee.
My son is born. At two minutes, his Apgar score is 8. At five minutes, it is 10. He is perfect.
As a newborn, Benjamin rarely looked directly into our faces. Babies are supposed to prefer human faces to other shapes, but for months he explored the outline of our heads. "He's staring at our auras," Pam said.
"Maybe he's still connected to a higher consciousness," I said, trying for a joke. But something niggled at the edge of consciousness. Something was off.
In one hand, I carry my test kit, and in the other, I lug my rental breast pump into my office — a dusty book storage room in the elementary school, where I put up my TESTING: DO NOT DISTURB sign and lock the door three times a day so I can empty my aching, dripping breasts.
Being held is different from
holding someone — a baby, a child, a lover.
Being held is an arm's weight,
warmth, and the deep security
of being attached to the earth,
being reminded of gravity.
At the picture window, Ben waves good-bye to Pam and Morgan in the mornings, and then with the same hand makes the sign for "I love you" and then waves, alternating the two over and over. When Pam drives away without giving him one more "I love you," he whines.
He makes a best friend in his first week of preschool, and they play every morning together, mostly running, chasing, swinging, and climbing. One afternoon, when I come to pick him up, I find Ben and his buddy dancing with scarves to classical music the teacher has put on for them. Their faces are flowers fluttering in a soft breeze.
At home, though, my sweet boy is a stuttering, running, slamming, screaming, stomping, throwing, smashing, trashing, crying, out of control mess.
"No," he shouts. "This way. Stupid door. Stupid curtain. Stupid Cupid." I know he wants to say stupid Mommy, but it's prohibited because names hurt people's feelings. So he whispers it. "Stupid Mommy. Time out. Time out. Time out." Then, when I tell him to pick up the books and toys he threw across his room during a time out, he says in a tiger voice, "I'm angry at you."
"It's okay to be angry at me." At this moment, I'm calm. Two days ago I screamed at him in the loudest voice I've ever used with him; my throat hurt for hours afterwards. Now my stomach is tight, my head throbs. "Why are you angry at me?"
"I'm ANGRY at you." He growls, but doesn't answer.
This afternoon he finally took a nap after a week of none. When he woke up, and all the way until dinner time, we had our sweet boy back. Who will come out of that room tomorrow? A growling three-and-a half-year-old or my cuddly boy?
At our first parent-teacher conference at the preschool, Pam and I share our concerns over the tantrums and tell his teacher that timeouts seem to calm Ben. "He watches his clock, and knows when three minutes are up," Pam says. We are kind of proud of this.
"Young children can feel abandoned on time-outs," the teacher says. "It might be better to hold him during his upsets."
I leave the meeting feeling like a horrible mother. Like the old refrigerator mothers I learned about in graduate school in the early eighties. Or the schizophrenogenic mothers, who caused mental illness in their children. Now we know that serious disorders like schizophrenia are caused by genetic anomalies, not a mother's behavior, but still I wonder what I'm doing to my son to make him like this.
He calls us butthead, stupid, idiot, poo-poo head. He is five and he is furious, throwing his body on the floor, stomach down, head up like a tortoise leaning its long neck skyward. He plugs his ears against our voices, doesn't want us to repeat anything; it's poison to him. He splays his right hand out, palm up and curls his fingers inward, his gesture of extreme frustration.
His cries are sometimes angry wails, but sometimes when he is truly hurt, he sobs and I can hear the intake of breath between sobs coming from his gut.
"Why don't you just talk about feeling mad?" I say one evening. "You don't need to have a tantrum; you can scribble in your mad book or rip up some scrap paper. Why don't you just tell us you're mad?"
But he is silent, and I know he hates me when I send him on a timeout, five minutes now, solitary confinement in his room. He doesn't say "I hate you" yet, but I know I am frustrating him, turning away from him, pushing him away. And it's breaking my heart.
I don't hold him, like his teacher suggested and like Virginia Axline did with Dibs in therapy. I'm afraid of rewarding the bad behavior — my training in college and grad school was thorough. I understood behaviorism. Reward. Punish. Natural consequences. Logical consequences. Ignore the negative. Praise the positive. When I'm stressed, I fall back on this way of thinking, and it feels both right and wrong.
During calm times, when I want to embrace him, he pushes me away. He can't tolerate the feel of my skin on his; it is repulsive to him. When he's raging, I can't tolerate him. I don't want to hold him. I want to leave until it's finished. I want to go away. I am repulsed.
IEP, or Individualized Education Plan, [noun]: a document, usually about fifteen pages long, outlining a special education student's present functioning, a list of goals for improvement, and what kind of special education program will meet his or her needs.
IEP [noun]: a meeting of parent(s), teacher, support staff, and/or advocate(s) in which an IEP document is developed and approved by parents.
IEP [verb]: the action of holding an IEP for a student; e.g., "We're going to IEP him next week."
School psychologists attend an IEP meeting for every student they assess. In a typical school year, a full-time school psychologist will attend seventy to eighty IEP meetings.
Excerpted from My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli, Jennifer Silverman, Sarah Talbot. Copyright © 2009 Yantra Bertelli Jennifer Silverman and Sarah Talbot. Excerpted by permission of PM Press.
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