Living with Differences
By Anna Stewart
In the first week at my daughter's inclusive preschool (half kids with special needs, half "typical" kids), the parents smiled thinly at each other as we tried to figure out who had the disabled kids and who didn't. No one knew how to begin a conversation — we were afraid of offending each other.
I called a meeting so we could introduce our kids and ourselves. In 30 minutes, everything changed. We found our common ground: we were all parents raising preschoolers. Some of us had children who loved music, couldn't use the bathroom yet or screamed when someone got too close. And some of us had kids with disabilities.
What’s appropriate for the others?
Later that same week, I went to a workshop for parents raising kids with special needs. Three of the mothers had kids with severe disabilities — kids who would never walk, talk or go on sleepovers. Three others had children born with Down's Syndrome. One mother had two kids on the autism spectrum and another had a blind toddler.
Several others were like me. My daughter looks normal but she isn't. Like so many parents whose kids live with "invisible" disabilities such as sensory integration issues, learning disabilities, attention disorders, mental illness and general delays, we face the challenge of raising kids who look "normal" but behave inappropriately or immaturely. We are often the ones most judged as "bad" parents.
We all knew a lot about how to be with our own disabled children, but we were unsure how to be with each other's. One mom whose 10-year-old son is immobile was asked to watch a child with autism who ran all over the place. She had no idea what to do.
Since we had our common ground safely beneath us, we could talk about the differences even within this small community. If it's hard for us to figure out, imagine how difficult it is for "normal" families to know how to talk to us, much less truly understand what it is like to raise a child with special needs.
Finding common ground
When I hear or read honest stories about living with disabilities, I am reminded that the common ground we share is that first, we are all parents doing the best we can — whether we are taking our kids to soccer games or to speech therapy. If we relate to each other as parents first, then we can begin a relationship that is based on real understanding, honest interest and open dialogue. Now that would be truly inclusive.
In our neighborhoods, at our schools and in the grocery store are families whose lives are touched by a child with a disability. Actually, there are over 20 million such families in the United States. We often don't know who they are or how to interact with them. We stare, trying to figure out what's wrong with these children. We avoid eye contact. We leave them alone, convincing ourselves that they don't want to be bothered, or we judge the parents for not controlling their children.
Here's the truth: On bad days, we don't want to talk to strangers; we don't want to explain our children. On good days, we are happy to educate other parents about our child and our lives. And we want to be seen as the loving parents that we are.
The burden of having a child with special needs is political as well as personal. We want to be able to go out in public with our children, but it is not always easy for us. We don't want pity or even help. We do want compassion and accessibility.
The bottom line: commonality
How do you introduce yourself to someone who has a child with special needs or a child with different needs than your own? My advice is to look for something you have in common. If you're at the park swinging your toddler and you notice the child next to you has Down's syndrome, open with something like, "I can't keep a hat on my kid, either," or "What cute shoes! Where did you get them?" or the easiest of all, "What's your name?" (ask the child, even if she or he can't speak).
Avoid asking how old the child is. Almost all of our kids with special needs are behind developmentally and comparing by age is a tender issue. When my daughter was a toddler, I often told people at the park or store that she was younger that she was more to protect my own heart than hers.
One more bit of advice. When you talk about our kids, please don't call them, "that Down's kid,” or “that disabled kid." Put the kid first, the disability second. We do.
We give a lot of lip service to accepting differences in my community. It's easy to say we accept all races in an almost all-white town. It's easy to say we accept all kids as long as they aren't in our children's classes, bringing down the CSAP scores. It's easy to say we think equal access is important, except when we're asked to help pay for it.
It's not easy to live in an inclusive community, but it's critical that we do. If we can't accept differences in our own villages, how are we going to find peace in the global community? So when you see me or another parent like me, introduce yourself. We might have more in common than you think, and so could our children.
© Anna Stewart
Anna Stewart, B.A., C.M.T., C.H.T., mothers three young children, one with special needs. In her classes, workshops and services, she weaves her expertise as a professional writer, creative artist and student of rhythm dance. Anna offers a number of classes in the Boulder, Colorado, area. She can be reached at (303) 499-7681, [email protected] or see her web site at www.motherhands.com.