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The Conversations We Should Be Having About Special Needs

More than ever, kids with and without a diagnosis are playing and going to school side by side. They seem to get along pretty well. But what about their grown-ups?
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Nearly one in six U.S. children has a disability and the prevalence of parent-reported childhood developmental disabilities jumped 17 percent between 1997 and 2008. So more than ever, kids with and without a diagnosis are playing and going to school side by side. They seem to get along pretty well. But what about their grown-ups?

Parents set out to find out, surveying nearly 500 moms of children with and without a special-needs diagnosis with the help of research firm Quester. Our survey revealed that all of us, to some extent, tiptoe around one another. Only 22 percent of moms of typically developing kids will acknowledge another child's special needs with that child's parent. The number (32 percent) isn't much better for parents of a child who has special needs.

Three out of four moms of kids with special needs have heard an insensitive remark from another parent. But among moms of typically developing kids (I fall in this group) only one in five acknowledge making such a comment. We may be clueless, unwilling to confess... or what constitutes an insensitive remark may be open to interpretation.

A few things did emerge as clear: Moms of kids with special needs don't want pity. They do want understanding. They would prefer that a fellow parent approach and ask a question about their child, rather than see her turn nervously away. They don't really want advice, however well meaning. "I don't want to be told 'Your child will be okay' or 'I don't see anything wrong with your child,'" one mom of a child with special needs commented in the Parents survey. "I know they try to make a nice comment but if they are not parents raising a child with special needs, it's really annoying."

It made me feel better to read this story by a mom of a child who has autism that we ran in the April issue of Parents magazine as part of a 20-page section called "Life in a special-needs world." If two best friends had such difficulty confronting the conversation about a diagnosis, no wonder I find it challenging. One reason it may be an uncomfortable conversation for some moms is that it hits close to home: Our survey found that one in four moms of typically developing kids wonder if their child should be evaluated for a developmental delay.

We may find it hard to talk to one another but in classic "do as I say, not as I do" fashion, we are trying to educate our kids. Four out of five moms of typically developing kids have talked to their children about people with special needs (as have 73 percent of moms of kids who have special needs). We are also pretty open to inclusion in our schools: 63 percent of moms of typically developing kids say children with special needs should not be separated from their typically developing peers, and only 15 percent of parents (of either typical or special-needs kids) felt the two populations should be separated at school.

We are trying to break through the silence at Parents, with the survey, the series of articles and the portraits and videos featuring kids with special needs in the April issue (including on the cover) and on Talking with the moms of the children photographed on our cover shoot, I found we shared many things in common. We love seeing our child smile. We love watching our child interact with a sibling. We love giving and getting hugs. And we all want much the same thing for our kids: a future with fewer labels and more open communication. If all that common ground isn't a conversation starter, I don't know what is. Everyone stands to benefit: One parent of a child we photographed for the issue told me that her son, who has autism, has changed how she and her husband see the world. "My husband and I had zero experience with kids with special needs. He has changed how we see everyone. We have more respect now for people who are treated differently. It's made us more compassionate." If it wasn't for her child, she said, "I wouldn't see the world the way I see it now."