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Easter Seals Story: Getting Help for Asperger's Syndrome

Was it ADD? Anxiety? The Kozak family didn't know what was plaguing their daughter Abby. But with the help of Easter Seals Michigan, they found out and got the treatment and services they needed.

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He points out that little unexpected things, like a sneeze, cough, loud clapping, even a humming bee, can upset a child with autism to the point of having a meltdown.

Through various Easter Seals programs, Solomon notes that parents can begin to discern how to work with their children with autism. Some of these changes are just a shift in how parents and their kids interact with each other.

For example, since new experiences can trigger overwhelming anxiety for kids with autism, he instructs parents on how to help desensitize their kids by gradually exposing them to new things. And therapists work with the children to help them become more thoughtful about how their actions affect others.

Managing and improving

These strategies have worked well for Kozak, who says, "(Easter Seals) basically taught us to be able to understand Abby more and how to let things go when you're really trying to fight it. That's always been our issue with Abby, 'Why aren't you getting this?' We finally have an answer that puts everyone at ease."

Kozak recalls how birthday parties used to be a point of contention at their house. Her younger sons, ages 13 and 10, would want their sister to participate, but Abby hated the noise and crowds that came along with the celebrations.

"It used to be a power struggle to get her to come down for the party," says Kozak. Now, Kozak has learned to give Abby her space – if she doesn't want to be at the party, that's OK.

But Abby's therapist has also helped Abby understand that her actions have consequences, and it's also OK for her younger siblings to let her know they're hurt when she doesn't attend. Their compromise is to have Abby come to part of the party and then go to a quiet room where she can escape the noise that can trigger her anxiety, which can bubble over into anger.

"I know that Abby has a very big heart," says Kozak. "She's very sweet and very kind. We've seen her bad side, but she's got a sweet side, too."

School has been another source of frustration for Abby – and for her parents. "Many people with Asperger's can be very, very sensitive to noise or light or crowds or pretty much anything," says Abby. "For me, it's mostly just sounds and crowds." Seemingly simple tasks became a source of constant worry and anxiety for Abby at school. Getting into her locker. Walking through the hallways.

"I used to actually hide (in the hallways) and pretend that I was invisible and weave my way through the crowd without bumping into anyone. Lately, I've been more relaxed about it and getting to class on time. I'm not hiding as much. I really don't mind being a little more noticed because of Easter Seals."

Abby's therapist worked with the school to address Abby's needs. Little adjustments have made all the difference. For instance, Abby can now leave class five minutes early on days where she thinks the crowds might be too overwhelming. And she also has a quiet room she can go. (So far Abby hasn't needed it, says her mom.) "I have a lot of people I can count on when I'm at school," says Abby.

Kozak explains that she used to field questions from teachers and other staff at school wondering how to deal with Abby's anxieties and, at times, bad behavior. These calls would often leave Kozak feeling overwhelmed.

"I didn't have any answers for them." Today, Fletcher maintains the bulk of the contact with Abby's teachers, giving them specific strategies to help Abby. "The school staff now talk to the therapist more than they do with us," says Kozak. "It's been a real relief."

Getting kids involved

Beyond family and school life, Easter Seals actively encourages those they treat to get involved in the community. "One of our big goals is community work," explains Solomon. "We want to create ways for kids to have a positive voice in their communities."

For Abby, becoming part of Easter Seals Teen Advisory Council was not only a chance for her to serve the community, but also an important part in her treatment. "It took a year of coaxing to get her to join," says her mother (social awkwardness is a significant symptom of Asperger's). "But that's where she's just blossomed socially."

Jul 10, 2013 06:44 pm
 Posted by  marzs13

Hi, I have an adult son who has a lot of social anxiety. It started around age 16, but has progressed since. He self medicated by getting high all through his teens. He has been in more than a few rehab programs and hospitals. I don't think it's a substance abuse problem as much as it is him just wanting to feel normal or what he thinks is normal. He has problems with noise and crowds. He doesn't have any real friends and never finished high school, although he tried but could never sit in the classroom. The noise and other students talking would distract him or he would think they were talking about him and eventually he would leave. He stayed in school until he was 20 then he tried to get his GED. Unfortunately, because of the bad choices he's made he finally got in trouble with the police. Mostly for stupid things where he was only hurting himself. He doesn't seem to be able to work because he can't deal with people. We're at a loss on what to do and someone said that you deal with mental illness. He has been diagnosed with being bipolar and border line schizophrenia. I don't know if that is what's going on or if it could be something else. What I do know? He's a good person and doesn't want to feel this way. He gets in trouble out of frustration. He feels lost and hopeless and has lost faith that there will ever be anything to help him and I don't know what to do at this point. The last time he was at the hospital, they told me I should be trying to get him on disability. Anyway I guess I just want to know if you can point me in the right direction. Thanks for your time.

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