Mom’s message: There is hope for children with autism
Living with autism has proven to be a difficult ride for Seth Sparrer, of Middleburg. But the 21-year-old has learned to accept the condition that can greatly impair social skills, communication and the ability to create lasting peer relations.
“I feel it means you are special. I used to hate it, but as I got older, I learned to accept it — just like the X-Men have a hard time adjusting to their special gifts and to other people in life,” he said. “I now believe it is why I have a creative mind and a great connection with younger kids.”
Sparrer is a high school graduate, works in the local community, helps lead a pack of Cub Scouts, runs the sound booth at a small local church each week and has even worked his way to becoming an Eagle Scout a few years ago.
The key to defying the odds and being successful despite the challenges of autism?
“If it wasn’t for my family, then I’m not sure what I would do. I would be lost in life,” Sparrer said. “My mom has been my biggest advocate. She has taught me to do things like other kids and to not use my disability as an excuse. She stood up for me growing up with school and other activities and now I’ve learned how to do that better myself.”
Early intervention is a key part of helping a child adjust.
“When he was 2, he just played differently. He lined up characters around an oval table and would walk back and forth. If one was moved, he’d notice it right away,” said Tonia Clark, Sparrer’s mother. “He’d play with things like a spool of yarn because he liked the way it felt and moved.”
Clark enrolled him in a special needs preschool when he was 3, and saw other children that were similar to him. She started reading all she could about autism and talking with doctors. Sparrer was initially diagnosed with autism at age 4.
“I wasn’t as shocked as some parents at the diagnosis because I read a lot about it beforehand,” she said.
Sparrer received language therapy, started learning sign language and was introduced to the Picture Exchange Communication System.
“I made him a book with Velcro. He would take a picture out of it and stuck it to the front of the book to tell us what he wanted,” Clark said.
In second grade, Sparrer started saying a few words. By third grade, he was able to communicate much better verbally. Not all children with autism are able to ever communicate verbally — there are different degrees of the disorder measured on a wide spectrum of intensity.
But for Sparrer, being able to relate to his peers has continued to be a life-long challenge.
“The worst part was when he hit those middle and high school grades,” Clark said. “When kids get to a certain age, they are not as accepting. Friends before sixth grade can change. They start thinking that if someone is acting weird, they shouldn’t hang out with them.
“Seth really struggles with those social interactions — especially with people his own age. He interacts well with kids who are younger and with older people. He also can’t deal as well with being hurt. He was hurt very badly by someone as a junior in high school. That was four years ago and he still remembers. He still avoids that other person.”
The disconnect can be hard for parents to deal with, as well.
“I’m not sure you can ever really learn to cope with how other people treat your child,” Clark said. “Even now there are oddities when he is out in public and you wonder how people will react to that. You learn to look away sometimes so you don’t see their reactions.”
Clark admits that each milestone achieved brings new challenges.
“Now that Seth has a job, I try to tell him that this isn’t high school anymore. He can’t call me when he has a problem. He has to go to his bosses and let them help him work things out,” she said. “It can be difficult to put an adult child into an adult world when they don’t see the disability at times.
“But you can’t shelter a kid with autism. The real world is there. But you can still be an advocate for your child — just in different ways. For example, it doesn’t hurt to meet with your child’s supervisor and give them a little more insight about what is going on and what works or doesn’t.”
Networking can help
Clark said another important coping strategy for her is networking with others — helping parents who have children with autism.
“It helps when you can tell a child with a 5-year-old who is autistic that there is hope. That the child can succeed and contribute and learn along the way,” she said. “What works for one family may not work for another. It helps to learn as much as you can and also to learn to not take everything to heart. People are going to look, but don’t let it get to you because they don’t understand. There is progress and there is hope with kids who have autism.”