My son and I stood in the frozen-food aisle of our favorite grocery store trying to decide between Double Chocolate Chunk and Mackinac Island Fudge ice cream, when a woman suddenly appeared and stole our playful mood. "What's wrong with him?" she rudely asked, as her young daughter perched precariously on the back of their overflowing grocery cart.
The "him" she referred to was my 10-year-old son, Eric, whose cerebral palsy requires use of a wheelchair. To special parents like me, such a question is intrusive and demanding, and the stranger who asked it wore a pained expression that said more than her stinging words ever could.
It wasn't the first time I'd been asked this question. For people with special needs, resources and information are scarce. After a decade of parenting a child with cerebral palsy, I've found many people are surprised to discover that children of special needs move among us and even visit the grocery store. Such individuals often embrace a profile of the disabled as people who are poor, abused and ultimately miserable. Happy, attractive and well-adjusted children moving about freely in society creates an image they can't easily digest. Unfortunately for my son, these people usually avoid looking into his eyes and instead speak to his wheelchair in order to maintain the distorted image they hold of the disabled.
"There's nothing wrong with him," I said honestly, offering a brief explanation of Eric's special needs. The woman paused, trying to make sense of what was fast becoming an uncomfortable encounter. "It's a shame, because he's so cute," she said, before delivering her final blow. "I don't think I could stand having a handicapped child." Then, she turned and walked away.
I shook my head at the intrusion that threatened the priceless moments of normalcy I'd created for my son. It's tough to parent a child with a disability, but negative reactions and stereotypes make it much tougher. My son's cerebral palsy makes it difficult for him to eat, and when he's tired, he may drool. He only recently learned to sit up unassisted for short periods of time, and he experiments loudly with developing speech. Appearing in public invites unwelcome stares and thoughtless comments from children who are simply curious and from adults old enough to know better. We face significant daily challenges ranging from handicapped parking violators and educational roadblocks to blatant discrimination.
Still, nothing stings more than the unwanted attention of strangers loudly misjudging my child.
The fact is, I neither want nor need your pity, because when it comes to my son, I don't feel shortchanged. In all his glorious imperfection, Eric has been my greatest life teacher. He's taught me to elevate parenting above career and self-interest, to judge less and forgive more. He's taught me to listen when communication goes beyond words. His physical challenges demand I stop long enough to savor shooting stars and fireball sunsets. He's made me a more honest journalist, and when he struggles to say, "I love you," he commands center stage.
Sometimes I sneak into his room late at night to marvel at his perfect body in slumber. It's the only time I pretend things are different.
If you must feel sorry for me, do it because I have to work constantly to ensure a good education for my child while the schools and State battle over special-education funding. Or because lack of public accessibility means my family must cart a heavy wheelchair down steep stairs to view a magnificent waterfall. Be outraged because statistics proclaim the odds of my son graduating high school are dismal, and resources to assist families with this tremendous parenting challenge are woefully inadequate. Be angry because too often I must explain my son's value to professionals who should know better.
But don't pity me as a mom, because I can't imagine having a better son.
Recently, I listened to a dynamic motivational speaker and children's book author. The speaker, who has cerebral palsy and uses a wheelchair, has achieved success only dreamed of by many of his able-bodied peers. Even so, I watched a young teacher in the audience cry openly over what she perceived as the man's awful fate. I was profoundly saddened. This young teacher, entrusted with molding the futures of all children, pitied him, even after he gave her so many reasons to celebrate his life.
The woman in the grocery store wasn't the first to rudely intrude upon my day and she won't be the last. Usually I welcome a stranger's questions as an important opportunity to teach about individuals with disabilities. But sometimes, I just want to buy ice cream like everybody else.
If you see our family in public, feel free to ask questions, but keep the intrusive and rude comments to yourself. Maybe I have been given an unfair parenting role, one lacking in any significant parenting rewards. Maybe I even deserve your pity.
Judy Winter is the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations and co-founder of the Eric 'RicStar' Winter Music Therapy Camp at Michigan State University. To learn more, visit: www.judywinter.com or e-mail firstname.lastname@example.org.
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