Easter Seals Story: Getting Help for Asperger's Syndrome

For years, Margaret Kozak and her husband, Scott, wondered how they could help their daughter Abby, now 16, who was prone to furious meltdowns and other behavior problems.

"It's been a difficult process to get her diagnosed," explains the Rochester mom. "At 6, she was diagnosed with post-traumatic stress disorder, then ADD, then severe anxiety. But nothing ever really explained why she was doing what she was doing. No matter what we tried to do, nothing worked."

Three years ago, when the Kozaks' health insurance changed, they were referred to Easter Seals for a new therapist for Abby. "I knew that Easter Seals had services for disabled children, but I wasn't sure what they could do for our family. I wondered, 'How is this going to work?'" Kozak says.

That question doesn't surprise Easter Seals Michigan president and CEO Brent Wirth.

"A lot of people know our name, but don't know exactly what we do," says Wirth. "When people think of Easter Seals, I want them to understand that we are a community resource not just for the individual, but for the entire family. You can call us when you need help, and if we don't have the services you need, we'll make sure that we find out who does."

Wirth points out that throughout Easter Seals' 93 years of serving people in Michigan, it's actively sought ways to provide the kind of services that people – both adults and children – need within the community. It's all part of the Easter Seals mission to help individuals with disabilities and special needs, and their families, live better lives.

Understanding Asperger's

For Kozak, Easter Seals worked to match her daughter, who was diagnosed with Asperger's syndrome, with a therapist who understood Abby's needs. Their therapist was then able to develop a comprehensive approach to Abby's care – setting her up with additional help at her school, getting her involved with Easter Seals programs and providing support to the Kozaks through individual counseling for all family members.

After several meetings with the Kozaks and their daughter, therapist Marianna Fletcher asked them how much they knew about Asperger's syndrome (also called high-functioning autism). Fletcher diagnosed Abby with the disorder and began treating her with behavioral therapies. Abby's psychiatrist prescribed medication to help, as well.

While life for the Kozaks didn't change overnight, the family began to notice improvements in their lives both at home – and for Abby at school.

"The way to think about all forms of autism, no matter how severe or how mild, is that these children want predictability," says Dr. Richard Solomon, M.D., vice president of medical affairs for Easter Seals Michigan and a developmental and behavioral pediatrician with more than 25 years of experience. "They want to keep the world the same – they want life to be predictable; they don't want surprises. Their brains are not complex enough to handle uncertainty."

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."

Abby agrees. "Lately, we've been working on an anti-bullying campaign. We're planning a march," she says. "It's been a lot of fun just to hang out with a lot of different people who had similar problems to mine, so I related to them. I just feel comfortable."

The council of teens, which is part social group, part advocacy group, meets every two weeks, rotating between the Easter Seals offices in Auburn Hills and Southfield.

Through her involvement in Easter Seals, Abby, who used to shun crowds and keep mainly to herself, has been able to accept a role as Easter Seals' 2013 Child Ambassador. The assignment has given her a chance to talk to several groups about the importance of the services offered through the organization.

In September, she participated in the annual "Walk With Me Detroit" fundraising effort at the Detroit Zoo. Abby walked along with a crowd of over 600 people. When asked if she was anxious about being involved, Abby thought about it for a moment.

"It was kind of like, more like an excited type of anxiety. I was nervous about what was going to happen. But then I noticed that my friends were there from the Teen Advisory Council. I saw them and I thought, 'OK, I'm good.' It felt pretty good."

The P.L.A.Y. Project

Easter Seals also has a new early intervention program for kids with autism. In its effort to support families of these children, Easter Seals offers the P.L.A.Y. (Play and Language for Autistic Youngsters) Project.

"Through the evidence-based program, parents receive training on how to interact with their (autistic) child in a way that promotes language development, encourages social interaction, and can lessen autism severity," says Solomon.

This early intervention program is primarily home based: Consultants visit with families in their homes and teach parents fun and useful ways to "play" with their children.

For more information, visit Easter Seals Michigan online or call 800-75-SEALS.

Easter Seals Michigan serves and supports people with disabilities or special needs and their families, so they can successfully live, learn, work and play in their communities. Easter Seals has been serving Michigan residents since 1920.


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