Experiencing disability – from two angles
My friend tells me, “You’re so strong. I don’t know how you do it.”
But we are all born weak, and in many ways we remain so. Some, carried along by good fortune, can imagine they are strong. Others of us face times of solitary brokenness when we must choose whether to give up or to walk through the pain, waiting for hope to follow us. On this path, the only thing that feels strong is our grip on an Unseen Hand.
I’ve experienced disability from two angles. The first affected who I became, the second determined how I will live.
As a sister, my childhood was a time of sorting through differences and teaching them to others; explaining why Tim was biting his palms or why Chad was in a cloud of dust flying away from the waiting school bus; clinging to unconditional love for little brothers whose behaviour wasn’t socially acceptable, while trying to become accepted myself.
My brothers have fragile X syndrome, the leading cause of inherited mental disability. A weakening of the X chromosome shuts down production of the protein needed to connect the brain cells that control memory and learning. In addition to varying degrees of learning disability, many with fragile X have long faces, large ears, and nerves hot-wired for unstable moods and hyperactivity. Some, like Chad, have symptoms of autism; they find loud noise, touch, or changes to routine difficult to process, and retreat into a private world of rocking or repetitive sounds in order to cope.
First identified in the early 1980s, fragile X affects one in 2,000 males and one in 4,000 females. About one in 250 women carries the damaged chromosome with a 50/50 chance of passing on the condition to each of her children. About one in 700 men carry fragile X; all their daughters will be carriers.
Behind a wall
Some describe fragile X as a “veil” masking a child’s true abilities. I picture it as a glass wall. I can see my brother behind it – the one who wants to understand, hug, and share with me. I just can’t get close enough to touch him. Not having the ability to wash one’s hair or add fractions isn’t tragic; the struggle to express thoughts and feelings and connect with those they love is where the tragedy lies.
While I didn’t enjoy the stares, I wasn’t afraid of Chad’s tantrums or embarrassed by my brothers’ unusual noises. Those are the struggles people expect to hear, the ones that would be easier for me to write. What fragile X really stole from me was my parents’ laughter, brothers I could connect with, and the feeling of being just like everyone else.
Chad didn’t know how to manage the excitement coursing through his body, so it often leaked out as rage. Some Christmases he cried, stomped around the house, or broke his gifts as soon as they were opened. Instead of singing carols and drinking cider together, my parents were grieving in their room or trying to coax Chad out of his, while I decorated the tree or played with gifts alone. I broke down in tears at my first Christmas gathering with my in-laws because felt so “normal,” and I didn’t.
My parents did their best, but were often without the support they needed. They had little energy to arrange play dates out of earshot of my brother’s rants or to advocate for me when I was bullied.
While others may fear him, the God I craved was fiery, thundering, warrior King. I cried out to him to come down and split my sea of tears, to stand up to the taunting when I could not. I didn’t dare ask him to hold me on his lap like a tender father. I didn’t know how to be that close to anyone.
An elusive normal
As a child I begged God to give my mom another baby, one who would be my confidante and playmate. Mom told me, “You won’t have another brother or a sister, but someday you’ll have a little boy or girl of your own.”
My college texts were stained with anxious tears as waited for the new blood test that would tell me with 100 percent accuracy whether or not I was a fragile X carrier. The test came back negative – permission to hope my future children would be normal!
When I was pregnant with our first child, I dreamt that when the doctor said, “It’s a boy,” my baby jumped out of her arms and ran around the room giggling.
I was only eight months off. From the word “go” Kieran was active, happy, and extremely bright. So bright in fact, that at age four he’d tell neighbours, “Your perennials’ chloroplasts are photosynthesizing to make glucose.” Not only was he healthy, he was off the charts!
But what a challenge he was to parent as he dumped dressers, climbed bookshelves, and ran away from us at the mall (out of curiosity, not anger). Time-outs did nothing to change his behaviour. We assumed he was just too independent and his parents just too green. With maturity and peer pressure he’d surely fall into step when he got to school.
Ten days into kindergarten, Kieran’s teacher chased me across the schoolyard to say, “Why didn’t you tell me there’s something seriously wrong with your son?” She painted a picture of a boy oblivious to the other students, swinging his arms like windmills in lineups, making animal noises during lessons, wandering out of the classroom.
I took Kieran to a psychologist and confessed my worst fear. “Is it autism?” The surprised therapist assured me it was not.
What followed were two stressful years of watching our happy boy’s anxiety and anger grow as he struggled to meet social expectations that seemed unnatural to him. We watched in despair and confusion as his peers’ ability to concentrate and play together surpassed his own.
Last spring we received a diagnosis: “pervasive developmental disorder – not otherwise specified” (pdd-nos), an atypical form of autism, genetically unrelated to fragile X, yet with challenges that felt all too familiar. The diagnosis meant that outbursts at the store and unpleasant calls from the school secretary weren’t ending any time soon.
For my husband it was frightening in its newness. For me it was deja vu. The second death of normal.
Pdd-nos is a delay in social skills and nonverbal communication that turns facial expressions, body language, tone of voice, and etiquette into confounding mysteries. Instead, Kieran’s mind is an encyclopedia of memorized books and videos about his latest fixation, from pipe organs to caterpillars (which he recites over dinner, making meaningful two-way conversation with him or anyone else a challenge)!
Cracks in the glass
The more I study fragile X and pddnos and see the world through the eyes of my brothers and my son, the more my compassion and patience for them grow. I can accept their weaknesses. It is much harder to accept my own.
As a teenager, I spent a lot of time in my room studying. I felt guilty for not engaging with my brothers, but realize now I was trying to help them in my own way. I was succeeding for three, to help my parents forgive their sons for what they couldn’t be. To prove to myself that was, at least in one area of life, normal.
The problem is, while it’s possible to get perfect marks on spelling tests, it’s not possible to be a perfect parent of a child with disabilities. I too have limitations and quirks that need to be viewed through the lens of grace.
I’ve come to accept that my life may not be typical, but I am definitely normal, in the best sense of the word: capable of giving and receiving love, forgiveness, and understanding. The depth of loneliness I’ve lived makes me alive to the smallest connections. Chad may never hug me, but I love it when he shakes my hand. Sometimes Kieran interrupts a monologue about dinosaurs to look me in the eyes and tell me he likes my macaroni. I’ve met an autism parent support group with a “new normal.”
And, I have a heavenly Father who holds me when I cry.
When I visit, Chad reminds me about the rotten Easter egg that exploded 20 years ago and Tim reminds me to change my oil. My brothers continue to teach me that people are valuable, regardless of their packaging or accomplishments. I remember the times I ran across the schoolyard to keep them from sitting in a puddle and the times I’ve held a howling Kieran on the floor while strangers stared their disapproval.
And I realize, maybe I’m stronger than I think.
—Angeline Schellenberg is a part-time Family Life Network staff writer, Christian Week correspondent, and a member of Crossroads MB church in Winnipeg.