Dare to Ask: Are Down kids aware of differences?

By PHILLIP MILANO, The Times-Union

Question

Do Down syndrome kids realize they have a disability?

Sam, 15, female, St. Charles, Ill.

Replies

I worked for years with people with Down syndrome. I'm sure they know they're different. It depends on how high-functioning they are, how much they really "get." Also, the older they are, the more they realize differences.

Ellen, 44, Mesa, Ariz.

I used to baby-sit for a Down syndrome boy. He was aware he was different because when we would go somewhere and people would stare at him, he would scare them and laugh about it. He didn't let it upset him, and he was only 12 at the time. He had a great sense of humor and did well in school. He understood he was different but didn't let it be a disability for him.

Traci, 27, Jacksonville

I work with a guy who has Down syndrome. Although he can be hard to understand, he isn't dumb. He has a name, and I treat him as an equal. I'm proud to be his friend, and I'm sure he knows he has some obstacles -- just like the mentally handicapped know when they're being made fun of. But I admire how they can smile and live their lives to the fullest.

David, 21, Houston

Experts say

Research suggests children with Down syndrome become acutely mindful around age 9 or 10 that they don't perform as well as their peers in some areas. However, awareness varies with the individual, said Dennis McGuire, director of Psychosocial Services for the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago.

"Most have a good sense they are different," said McGuire, who has counseled upward of 3,000 people with Down syndrome. "They are aware of people's responses [and] if people stare or treat them differently."

A majority of those with Down syndrome "are doing fine" with their situation, he said, but about 10 percent have "acceptance issues" and can isolate themselves.

"Those folks have some major problems because ... they don't accept others with Down syndrome, yet they aren't as accepted themselves by the general population."

Challenges can arise for children in strict "inclusive" or "mainstreaming" programs who lack access to others with Down syndrome, McGuire said.

"You have to have some relationships with your peers because they are the ones you connect to who are going through the same developmental stuff you are. A lot of these folks ... when the other kids without Down syndrome go on to college, or go out on dates, the kids with Down syndrome are left behind."

Most, however, are like David Jonaitis, 23, of Wilmette, Ill.

"I have a good life with having Down syndrome," said Jonaitis, who works as a grocery bagger and retail clerk. "I like to dance, I like to play sports and go to movies. People are very nice to me."

What should others know about him?

"Some people just need encouragement and honesty, so be nice to one another, and be yourself and just be cool. Be a friend. Be a compassionate person."

Phillip Milano, author of I Can't Believe You Asked That! (Perigee), moderates cross-cultural dialogue at Y? The National Forum on People's Differences. Visit www.yforum.com to submit questions and answers, or mail to Phillip Milano, c/o The Florida Times-Union, P.O. Box 1949,Jacksonville, FL 32231. Include contact information.