What It’s Like to Raise a Special Needs Child

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Karina Aguon has noticed “that look.” It’s the uncomfortable expression on some people’s faces when they notice something unexpected about her youngest son. She’s not alone. It’s a “look” that’s familiar to many parents of children with special needs.

With all the progress that’s been made in helping children and parents manage differences ranging from Down syndrome to cerebral palsy and other disabilities, parents still sometimes struggle with hurtful biases that threaten to hold their children back. But at the same time, they’re heartened by the enlightened attitudes they also encounter.

Aguon and her husband, Mike, live in Davidson County with their sons, 10-year-old Michael and 3-and-a-half-year-old Ben. Ben has Down syndrome and is working hard on his speech to be ready for kindergarten in a few years. “When he was little, I would see people with ‘that look.’ I would think they were wondering what was wrong with him,” his mother says.

Sheila Moore, executive director of the Down Syndrome Association of Middle Tennessee, has known “the look” a lot longer than Aguon. Her son, Matthew, is 19 and also has Down syndrome. “You see (people) looking at your child and you know that they’re feeling pity,” she says. “You know they’re thinking, ‘I’m glad that didn’t happen to me.’”

Although most people are supportive, the stares sometimes do signal bias – a bias that would disappear if people looked a little deeper. “Everybody that we know who has looked at us that way … they see a family doing fine,” Moore adds.

The noticeable stares also affect siblings. Moore’s 14-year-old daughter, Katie, is quick to notice someone wondering about her older brother. “When she sees it happening – the look – nine times out of 10 she’ll grab his hand or put her arm around his shoulder. That’s her way of saying, “‘He may be different, but I love him,'” Moore says.

More Than Stares

Jennifer Patton has also seen her child draw stares. She is the admissions and human resources coordinator for High Hopes, an inclusive preschool and therapy center in Brentwood. She and her husband, Patrick, have twin 9-year-old boys, Barrett and Bailey. Barrett has cerebral palsy and uses a wheelchair, sometimes a power chair and sometimes a manual one, depending on his activities. He started using a chair when he was about 2 years old.

“We had so many kids look at him and stare when we’d be out at the mall or the grocery store. They would sometimes ask, ‘What’s wrong with his legs?’ I would say he was born with cerebral palsy and give a brief description of what that is.” That was fine, Patton says, because kids are curious. It was the adults who would just blurt out, “What’s wrong with him?” in a rude way that bothered her.

Hurtful comments can come quickly for parents of children with disabilities. Aguon says her obstetrician told her soon after Ben was born that she would hear “all the stupid things that come out of people’s mouths.” Even with the warning, she was surprised when they went out for a family dinner at a restaurant on New Year’s Eve just two weeks after Ben was born.

It was the first time they had taken him out. It was cold, so he had on a hat and was wrapped in a blanket up to his nose. Still, a waitress glanced at him, and recognizing Down syndrome said, “Oh, you have a child with Down syndrome. I love them … If you don’t want him I’ll take him.” Aguon sat in silence the rest of the dinner but cried all the way home.


Misperceptions and Wrong Assumptions

Elise McMillan, director of community outreach at the Vanderbilt Kennedy Center for Research on Community Development, has also dealt with people wondering about her son, Will, who is 20 and has Down syndrome. With a 20-year-old, “we’ve been through lots of different stages,” she says. And it’s the incorrect assumptions many people have that she wants to set straight.

“People think that because a child has Down syndrome, he can’t learn, and he can,” she says. Her family deals with false notions by being open about the issue. “We’re very open about the disabilities, open about the limitations or challenges that may or may not be there,” she says. “Will knows he has Down syndrome and will talk to you about it.”

Patton also knows how incorrect assumptions can be a problem. Often, people who don’t understand cerebral palsy automatically think Barrett is cognitively delayed even though he isn’t. Other people’s attitudes can be a barrier. “Most people are pretty accommodating, but some just assume he can’t do things or don’t give him the option to try. We just have to say he can do it,” Patton says.

For example, when Barrett decided to participate with his friends in the kids’ run held in conjunction with the Music City Marathon last spring, he hit a roadblock. He wanted to use his power chair, but the event organizers were hesitant. Then they decided it would be OK for him to use the chair, but for safety purposes he’d have to start at the back of the pack instead of mixed in with his friends. It took several phone calls, but it eventually worked out for him to start the race with his buddies.

School Worries and Successes

Kelly Clippinger and her husband, Kevin, are committed to inclusion for their 11-year-old son, Brian, who has Down syndrome. Brian’s been in classrooms that include typical children since preschool. This inclusion is not just for Brian’s benefit, his mother says. The Westmeade Elementary fourth-grader has a lot to offer the other kids.

“I think so many typical children – because of the whole inclusion movement – are just much more exposed from early on in their lives. They learn that everybody’s different and you can definitely tell by another child’s reaction if he’s been around a child with special needs,” Clippinger says.

Aguon is getting Ben ready for kindergarten, and being with typical kids is an important part of his education. He’s in a Parents’ Day out preschool program at Woodmont Baptist Church and is the only child in his group with a disability. His mother thinks the learning goes both ways. “Ben learns so much from the other kids, and they learn from him. They learn compassion and patience and that everybody in the world is different,” she says.

Clippinger agrees that it’s what the other kids learn that will be important to the future. “Our hope is that down the line, one of the kids in school now will want to hire Brian 20 years from now, realizing that he can contribute.”

That forward-looking attitude shows how far Clippinger has come. “My biggest fear when he was born was that we would be the only ones who love him,” she says. She still chokes up at that memory, but the love and acceptance she’s seen in others has made a big difference. “That’s obviously been a great thing.”

Tammy Binford is a freelance writer living in Nashville.

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