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Autism Tough On
Parents, Too

By Jeanne Sager
LIBERTY — April 29, 2003 – It isn’t easy being the parent of an autistic child.
But there is help out there.
Since BOCES Parent Educator Sherry Eidel started a support group last year regarding autism and Asperger’s Syndrome, she’s seen interest go through the roof.
And this month, designated Autism Awareness Month, has spurred an even greater call for parent services.
The State Education Department defines autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a student’s educational performance.”
But what does that mean to parents?
According to Eidel, parents are at a loss when their child is diagnosed with autism.
“They might have a child born that has the correct milestones, and it might change suddenly,” she noted.
That’s when parents need to begin modifying their methods of dealing with their own child. An autistic child cannot generally handle social interaction the way other kids can, Eidel said, which makes even a trip to the grocery store a challenge.
The support group began, Eidel said, because more and more parents were calling BOCES looking for answers.
“We were getting more and more referrals, calls from parents,” she explained. “We’re seeing it diagnosed younger and younger.
“Like anything, now that it’s being talked about more, parents are reaching out.”
And that means more services are needed to serve the parents and guardians working to provide the best for their children.
Currently, school districts in the State of New York are mandated to educate children with autism – most of whom are sent to special education classes at BOCES.
But kids aren’t in school all day, and parents have to learn to balance love and compassion with the appropriate tools their children need to develop.
Mary Scheutzow has been attending the support group since she heard about it earlier this year.
Scheutzow’s daughter and grandchildren live with her in the Kenoza Lake home she shares with husband Jim – and that includes John, a Sullivan West youngster with Asperger’s Syndrome.
She’s found just sharing her experiences with other parents makes John’s journey to adulthood easier to deal with.
“There’s a commonality in the problems you face,” she noted.
Scheutzow’s grandson attends regular education classes, but his “stress level” is often higher than most other students.
“For a kid who doesn’t particularly like crowds or noise, school can be pretty stressful,” she explained.
But through the special presentations done by experts at support group meetings, Scheutzow has picked up tips on de-stressing John’s life.
“I learned things I might not know otherwise,” Scheutzow said. “I was given particular things to try.”
And, she said, some of them worked.
“It’s good to be able to go and ask questions,” added Kelly McRell, a Livingston Manor mom whose youngest son was diagnosed at 2 years old with autism.
“If I’m having a hard time with something, it helps to talk about it,” she said. “It’s nice to talk to other parents and find out what they’re going through – to be able to relate.”
That’s why parents are encouraged to attend.
Eidel wishes she could offer more respite programs for parents – a chance for them to get away and take a break to recharge their energy – but for now this is an important service.
“It’s a source of information,” Scheutzow said of the support group. “It’s not all that easy to deal with – certainly the Internet is helpful, but if you’re not Internet-savvy, you have nowhere to go.”
Heather Berg of Monticello is one of those Internet-savvy parents. When her daughter was diagnosed with autism, she went online, and that’s where she found all her support.
But the BOCES support group has been even better, she said.
“It can be very frustrating having a child with a disability and not really knowing what to do,” Berg explained. “Support groups are needed, period.
“There’s not a lot of outlets for parents with children with disabilities – you just feel isolated.”
She’d recommend other parents get involved in the BOCES group if they’re looking for someone to talk to, looking for information or will just be there to listen.
“Hearing about other problems and solutions is very helpful,” Scheutzow added. “It’s a stress reducer for us as adults, and that can only benefit the kids.”
For more information on meeting dates and times of the support group or other resources for parents of children with disabilities, call Sherry Eidel at 292-0082, ext. 142.

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