Can you define normal for me?
There’s More to His Life Than a Wheelchair
September 2015 BY A.J. ZENDER
On my first day home from college this past spring, bracing myself to live again with my parents as a 22-year-old college graduate, I walked in and saw my dad, just sitting down after work.
We went through the usual “How-are-yous?” “How-was-schools?” and “Where’s-moms?”
In the midst of this all too typical conversation, from down the hall I heard, “A!”
A grunting voice. It was my brother, Sam.
Since we were kids, he’d shortened my name to one letter. His call was bossy, indignant that he was not my first stop after walking through the door.
“In a minute, bud!” I yelled back. “Anyway, back to my test–“ “A!” He bellowed again, interrupting me.
My dad and I simply looked at each other and shook our heads, smiling. He said to me, “You know he’s going to keep going until you go and say hi to him.”
“I was trying to teach him a little patience.”
“He’s 18. If he hasn’t learned it yet, I doubt he’ll learn now.”
I walked down the hallway to Sam’s room. There he was, my skinny, black-haired kid brother. His head leaned back on the headrest of his wheelchair, the black frame and blue pads groaning as he reared up in excitement, staring at me through the doorway with the biggest grin on his face—a combination of happiness that his big brother was home and victory over getting me to do what he wanted.
Or maybe he simply wanted me to change the channel away from the Disney rerun he was watching.
Whatever it was, his smile made me forget my irritation. Sam has that gift; nearly everyone he’s spent time with ultimately celebrates his ability to make them smile. What makes this so remarkable is that my brother can do this without the ability to verbalize more than a handful of words. He’s the boy who speaks with his eyes.
When some people meet Sam, they can be blind to everything but the wheelchair, or the drooling or babbling or swinging of his arms. They can automatically assume there’s something more wrong with him than there is. I can feel their pity and sense they’re sad.
But they need not be.
Sam leads a full and vibrant life. And while his disabilities have been, and always will be, a challenge for my parents, two siblings and me, his life has brought us more happiness than we could have ever imagined or deserved.
In order to see and understand Sam like we do, your definition of “normal” simply needs to change.
My brother was born in 1997, four years after me, but he wasn’t diagnosed with Holoprosencephaly (or HPE) until nearly eight months after he was born. Often compared to Cerebral Palsy, HPE is a genetic disease that develops during pregnancy. The growing unborn child’s brain fails to form into two distinct hemispheres. According to the National Institute of Neurological Disorders and Stroke (NINDS), more severe cases of the disease can lead to severe facial deformities and mental disabilities.
About one in 10,000 children are born with HPE, and depending on the level of severity, a child can either survive into late adulthood or die within his or her first few months.
HPE wasn’t well researched at the time of Sam’s birth, and he looked like a healthy baby boy, no physical issues whatsoever. But then came the warning signs. He got next to no sleep for the first few months of his life, staying up all day and all night, screaming. At six months, we realized Sam wasn’t crawling or rolling over. All of the major milestones that he should have been reaching in that first year just never came. My parents say that was the hardest part–simply not knowing what was happening with their son.
Once Sam was diagnosed with HPE, we as a family never truly faltered. While I’m sure there were people close to us who felt that the diagnosis was horrible news, we didn’t give up on giving him a good life; it just meant that we had to work that much harder to do so.
Sam never faced the same mental or physical deformations that some HPE kids have, and he now has the mind and awareness of a typical 18-year-old. He’s always the first to get a joke, especially the most inappropriate ones; he’ll sometimes laugh loudly at a racy line from television shows like Two and a Half Men or Mike and Molly. He loves swimming and shopping malls, in large part due to the girls there. He’s one of the biggest flirts I know; Sam will smile and make eyes at any pretty woman that passes by.
Sam’s body fails him when he tries acting on his desires. He lacks control, whether it be his inability to use the bathroom on his own or to stop his drooling. Sam simply can’t use his body in the way his environment demands. He can’t even leave his bed or wheelchair without someone there to carry him from one place to the next.
According to Nancy Clegg of the Texas-based National Holoprosencephaly Project, “A person with HPE can develop some physical skills, although never achieve milestones beyond those of an early infant.” She says a recent study revealed that “none of the children with [HPE] were able to sit independently, reach and attain objects, or utter words.”
Sam is able to make sounds come out of his mouth but he doesn’t have enough control over his lips or tongue to always make those sounds into coherent words. Often, his verbal attempts lead to unintelligible babbling, with an occasional clear word slipping out. When he was younger, one of his first utterances that we understood was “I love blue,” when he was asked what shirt he wanted to wear to school that day.
Over the years, doctors have tried different medicines to allow his muscles to relax, enabling words to come more frequently now. He’s mastered phrases such as “I’m good,” “I don’t know,” and “That’s dumb.” Very fitting for a teenager, right? At the beginning of the summer, my parents were discussing the local minor league baseball team, the St. Paul Saints, and the fact that comic actor Bill Murray, the famous Saturday Night Live alum and former Ghostbuster, is part owner of the team. Sam glommed onto the name, and every time we see a Saints advertisement now, Sam will smile and say, “Bill Murray.”
We do have a computer that can speak for Sam called an Eye-Gaze; it has a camera that follows his eye movements and selects options based upon where he looks, but we don’t use it at home much. It isn’t the words that help us communicate most, or best, with Sam.
He’s developed the natural motions that humans perform with their heads and breaths (the two things Sam has a great deal of control over), such as nodding, shaking, smiling, sticking his tongue out, sighing, rolling his eyes, etc. We know how to read him.
Sam’s movements of his limbs are similarly dramatic. The HPE makes his muscles so tight and immoveable that all motions are typically spastic; trying to move his hand from rest at the side of his wheelchair into his lap is a lightning quick motion of muscular movement for him. For most, our movements are slow and deliberate, but for Sam, slow and deliberate aren’t necessarily options.
He’s diagnosed as quadriplegic, but that doesn’t fully encapsulate what he goes through. Sure, he can’t stand with his own strength, but he can move his legs a great deal if given enough motivation. I’ve taken to calling him Thumper, in honor of the hyper cartoon rabbit from the Disney movie Bambi, because his legs and feet thump, thump, thump when he’s excited; one moment, you’ll be in the car talking about taking him out for ice cream, and behind you, you’ll hear what sounds like a nail gun coming from Sam’s shaking legs, strapped to the feet rests.
For a long while, there was a hesitation to take Sam to my sister’s home in northern Minnesota because there were 38 stairs separating the garage and the main living area. (Yes, we’ve counted them!) Pulling him and his wheelchair up one thud at a time was an arduous task. Now, as he’s gotten older, bigger, and closer to 125 pounds, it’s become even more difficult. We can’t blame my sister for the design of her home, but problems like this exist everywhere in public places, despite a number of regulations that have been put in place since the 1970s.
The Americans with Disabilities Act states that any business that provides goods or services needs to remove “barriers” to their establishment. This could be anything from tables in a restaurant or stairs at a zoo. The ADA has helped ease the burden of inaccessibility in Sam’s and my family’s lives, but in the end, it hasn’t eradicated the issue. There are many restaurants, stores, attractions, etc., that aren’t handicapped accessible. I’m not saying they should all have elevators installed, but in many cases, there isn’t even access to a ramp. The ADA has a clause stating that a business can forego these installations if they aren’t “readily achievable,” meaning that the business can’t afford the cost of materials or labor. In some small town establishments, this makes some sense, but we’ve faced this trying to enter well-known national chain restaurants and stores as well.
Leslie Harley is the former president of the nonprofit, Families for HoPE (a play on HPE), an organization that gives information to expecting parents of children with HPE, and forms support groups to aid in the process. She says that as an HPE child grows older, problems arise in the daily life of the child that most parents of able-bodied children never even consider facing.
“As I work with parents of older children who are non-ambulatory,” she explains, “I often hear of frustrations about the lack of dedicated space in public restrooms for changing soiled diapers and clothing. Some parents are forced to place their child on a blanket on the restroom floor because the child is too heavy for wall-mounted diaper changing equipment. The public restrooms in hospitals don’t even have these types of facilities.”
Despite this, I still think the bigger problem behind these oversights is people’s perceptions and assumptions.
When Sam was going into middle school, my mother and I attended the orientation. We were shown the special education classroom where Sam would be spending half of his time, and then his regular education, sixth grade classroom. As his soon-to-be teacher described the curriculum, my mom was more focused on finding Sam’s seat, scanning the room for a desk with his name placard on it. I could tell she was growing more and more tense.
The teacher waved her hand at a table, tucked into the back corner of the room, one without a card, or my brother’s name. “He’ll be seated back there. We figured that would be the best spot for him.” My mother stood there silently until the teacher was done, but once we got into the car, and for a long while that night, she cried.
The next day, however, was a different story. There were no tears as she phoned the principal’s office to berate the school for its treatment of my brother. This teacher, my mother explained, was calling attention to the fact that Sam wasn’t going to be like her other students. And this was not acceptable.
In the end, my brother was finally given his own desk — in the middle of all the other students. That was, after all, all that we wanted. And what Sam deserved.
A couple years later, while attending high school, Sam rode a handicap accessible bus to class. One morning, a police officer pulled the driver over—turns out he was intoxicated. Obviously, the ride could have ended tragically, but the key here is that my brother had no means to protect himself. Had he felt that the driver was driving dangerously, he couldn’t tell him to stop, or pull out a cell phone to make a call, like a “regular” kid. He was at the mercy of this drunk.
It’s probably clear by now, but let me make it even more so: Sam is one of the few people on this planet that I cherish; he’s my best friend. Sure, he tries his best to bug me, but what brother doesn’t? He knows that I’m laughing inside the whole time when he’s saying, “I’m the boss,” or when he’s poking me in an attempt to tickle me. I’m on his side when he accidently knocks a plate to the floor in the middle of a crowded restaurant — because I know that he’s simply trying to work his muscles to get the food himself. Even when he’s drooling, or interrupting me, or spitting his food out, I’m not embarrassed because I’m well aware that his mind is sharper than what his outward inabilities might show.
Sure, there are days that go by when I wish that I could play catch with him or make him “player two” in a video game but he still enjoys those activities, even though he can’t fully participate in them. If he helps with the cooking, my mom is holding the spoon in his hand and steadying the bowl in his lap. He gets such satisfaction from helping us out, from doing what he can for us, and from experiencing life. Even if he isn’t physically invested in a task that doesn’t mean he’s not deeply interested in it, and being there, he feels involved. And let’s not forget that Sam went to his prom, something I never did.
A recent high school graduate, Sam just started classes in a college-like program for young adults with disabilities; he’s brought to the YMCA to exercise, to the library, and taught to handle money and other necessary tasks in order to live independently–even though he never will.
Sure, I’d love to be able to give him the chance to experience some of the life experiences that he sees on television, love for him to have his first girlfriend, his first day on the job at a chosen career, but just because this won’t ever happen doesn’t change the fact that Sam is thrilled every day by the little things that many of us take for granted or ignore.
So, Sam, keep yelling at me to come see you, to give you a bite of my hamburger even though you just had your own dinner. Keep those legs moving for ice cream, Thumper. Keep growing your vocabulary, flirting with the waitress, and laughing at inappropriate jokes. Most importantly, never forget that no matter where life takes me, I’ll always be back to spend time with the best, funniest, and most normal kid brother anyone could ever ask for.
A.J. Zender can be reached at firstname.lastname@example.org