Usually, he lies on a blanket in front of the television. His hair is short, surrounding his face in chestnut tufts. Almond-shaped eyes of a deep brown hue glance to and fro, often moving before he can muster the strength to turn his head. When the grey and white drapes in the living room are open, and the sun casts its rays down upon his face, those eyes sparkle and gleam, as though nothing in the world is horrible or sad. During these times, he moves himself closer to the window, to look up at the sky.
It takes him several minutes to get there, because he cannot crawl or walk to it like other three-year olds, even though he is very tall for his age. Instead, he arches his back as high into the air as he is able, often showing the small plastic feeding button that sticks out like a second navel on his stomach, until he’s almost resting on the top of his head and the small, red heels of his feet. Then, with one great heave, he pushes himself backward with his right leg, plopping his back onto the carpet. He repeats these motions several times, sometimes falling from his arched back before he’s able to shove, but always trying again until he’s gotten to where he wants to be. And through the whole process, your body quakes. You want to pick him up and move him to the window, but the therapists have told you that he needs to do this, that this will help him.
On very nice days, when the air is warm and the sun is high, he’ll sit in his chair on the front porch, his arms at his sides, and his fingers bent into half-closed hands. His knees sit slightly out-turned and his toes are curled at the end of his tiny bare feet. The foam supports of his wheelchair outline his head and sides, casting strange shadows across the cement. He watches the box elder bugs, their red-striped wings flitting across the white railing. These are a source of great joy to him, and his face lights up in a huge, open-mouthed grin, showing a tiny dimple on his right cheek. He giggles, and the giggle is contagious, and you giggle with him, only his giggle is softer, purer, and you suddenly feel out of place in what must be a wonderful and merry world. You wonder that God believed that this child needed you, because you feel so inadequate next to his strength of heart and force of will. Because you cannot laugh at box elder bugs.
And then you realize that you are laughing, that he has taught you how, and you know that God gave this child to you not because of his need, but because of yours.
I wrote this piece for a class several years ago. The assignment was simply to describe someone we knew. My classmates seemed to have difficulty deciding who to describe. I had difficulty deciding how to do it. Above all, I wanted this description of my son to expand the boundaries of thought surrounding children with disabilities. I wanted to show the joy of raising a child with differences without eliciting the usual “I’m so sorry” pity-party that comes when I mention that my youngest son has cerebral palsy and my older son has autism. The easy thing to do, of course, would be to just not mention it or to focus conversations about my kids on my two daughters. But that isn’t doing any of them any favors.
When I finished the assignment and read it to my class, there was this eerie hush over the room. I glanced at the faces and tried to figure out what everyone was thinking. I’ve never been very good at reading faces and I stopped trying to figure it out when my professor finally cleared his throat and complimented my use of active verbs like “quaking” in my description. After class, though, several of my classmates stopped to talk to me. One woman whose grandson has Down ’s syndrome asked me if she could get a copy of the piece to give to him. Other students asked the usual questions:
“Was he born that way?”
“Is health insurance hard to find?”
“Do you ever feel like you have no other life?”
“I don’t know how you do it. I couldn’t do it. That sounds so hard!”
My professor asked the most telling question of all: “How does a parent come to terms with something like this and keep a positive outlook on life?” As though disability is meant to destroy everything you ever wanted to do.
Well, it is hard, and many parents never succeed at moving past the disability. The label their child wears exists as a label for their entire life. The child becomes a “CP kid” at school. The parents become a “CP mom” or an “autism dad” or “those poor people.” Most (not all!) schools reinforce the idea that everything should revolve around the disability—not around the child, but around the diagnosis. Family and friends, always the first to be understanding, are needlessly sympathetic and unknowingly reiterate what professionals tell parents: This is now your life.
I wasn’t always in a positive mindset about these things. When Zachary was born, doctors told us that he probably wouldn’t live through the night. Then they told us that he would never learn to smile or laugh. Then they told us that he wouldn’t recognize our faces. They said he wouldn’t be able to learn at school, that he’d always have seizures, and that he would always require extensive medical care. Three months later, my older son was diagnosed with autism and professionals told us that he’d never learn to talk, that he’d never make eye contact, that he’d never succeed in school, and that behavior problems were imminent.
Within six months, I was quite literally on the verge of a nervous breakdown. My family relationships suffered. I researched obsessively, spent hours on the phone with speech pathologists, occupational and physical therapists, homeopathic consultants, pediatricians, orthopedists, cardiologists, neurologists, child development specialists…the list goes on and on. Like so many parents, I looked for a cure. Like so many parents, I stopped living. Just stopped.
In 2000, I quit college and we moved closer to family. I decided to go back to work instead of continuing my education. A series of events changed my outlook on disabilities forever. The first seems a relatively small experience. We started noticing letters written in all the children’s books. Assuming that Kurtis (age 3 and unable to talk) was incapable of learning the alphabet, my older daughter took the blame. Then one day, I glanced down the hallway and there Kurtis was standing on the bed with a crayon and writing the ABCs in perfect symmetry along the wall of his bedroom. Beyond the need for some serious apologizing to my daughter, I recognized a need to re-evaluate everything I thought I knew.
That same year, Zack was having a feeding button surgically implanted into his stomach. On my way home from work to pick him up and take him to surgery, I got a flat tire and try as I might, couldn’t budge the lug nuts. So I walked to the nearest store—a surplus and used appliance store—to call my father-in-law for help. While there, casual conversation with the store owner led to my reasons for needing to drive to Boise that day. I explained Zack’s surgery and a relative of the owner, curious about cerebral palsy, asked some questions. When I explained that Zack was stillborn and resuscitated leading to brain damage (that’s what cerebral palsy is), the owner said, “You have to wonder why doctors bring them back in situations like that.” Excuse me? No, you don’t.
By 2002, I was settling into this new life with a slightly new perspective. Kurtis had learned to talk (and read well beyond his grade level). Zack did, in fact, recognize his name, did smile and laugh at appropriate times, did communicate with us in his way. I’d even gone back to college. I had learned to believe in my kids—all of my kids. But I was frustrated with an education system that focused on all the things they couldn’t do and a legal system that gave little to no support to families dealing with educational discrimination. One of the professionals I was working with recommended a program that changed my life (and the lives of my family members) forever.
The program is called Partners in Policymaking. This is a leadership institute for people with developmental disabilities and parents of people with developmental disabilities to learn how to get involved in their communities, in legislation, how to maneuver the educational system and other services provided to people with disabilities, and how to actively self-advocate (or teach your kids to self-advocate) for the things that they want, deserve, and have a right to. While I do use what I learned about all of these things, they were the least important lessons from this year-long program.
The important and life-changing lessons came from the unique model of the program. Parents of children with disabilities work side-by-side with adults with disabilities. These people had specific life goals. They wanted what everyone wants and simply used the tools they needed to get them whether those tools were feeding tubes or wheelchairs or support staff that they interviewed and hired on their terms. Working with them was the proverbial slap-in-the-face and I was a parent who needed it.
I realized then that believing in my kids wasn’t enough. Telling them that they could wasn’t enough. I had to advocate for the tools they needed to follow their dreams and teach them exactly the same things I taught my other children. I had to take them to exactly the same places I took my other children (wheelchairs and sand don’t mix, by the way—I recommend a buggy for that kind of trip) and talk to them with exactly the same language and tone of voice.
I used this new knowledge at home, but I also used it at work where I taught students with emotional or behavioral disabilities in a private facility. Kids who were told they could never graduate. Kids who were told they couldn’t learn. Kids who gained an average of 30 points on their standardized tests when given the same curriculum other kids their age received. And three of them graduated high school with their classes the year before I moved on.
So how does a parent come to terms with having a child with a disability? They realize that there isn’t anything to come to terms with. There is only a child who needs what all children need: parents who love them, parents who believe in them, and parents who are willing to teach them how to be adults. The struggle with raising a child with a disability isn’t the child. It’s the society that feels sorry for them. It’s the school that gives up on them. It’s the assumption that they can’t.