Parents of special needs children get help at Hill support group

Posted 4/26/16

Chestnut Hill resident Jean McCoubrey helps her son Sam cut his birthday cake at the Allegheny Valley School (AVS), a non-profit organization established in 1960 to care for children and adults with …

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Parents of special needs children get help at Hill support group

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Chestnut Hill resident Jean McCoubrey helps her son Sam cut his birthday cake at the Allegheny Valley School (AVS), a non-profit organization established in 1960 to care for children and adults with intellectual and developmental disabilities. (Photo courtesy of Jean McCoubrey) Chestnut Hill resident Jean McCoubrey helps her son Sam cut his birthday cake at the Allegheny Valley School (AVS), a non-profit organization established in 1960 to care for children and adults with intellectual and developmental disabilities. (Photo courtesy of Jean McCoubrey)

by Sue Ann Rybak

Being a parent can be an overwhelming experience for anyone. As a parent you are suddenly responsible for the care and well-being of another human being. And the last thing any parent wants to hear is that their child is sick or has special needs.

Chestnut Hill resident Jean McCoubrey, 62, an architect, knows how isolating and exhausting being a parent of a child with special needs can be. Her son Sam, who is now 26 years old, has severe intellectual disabilities. When he was just 3 months old, he started having seizures, which, she said, eventually “interrupted his normal development.”

Fortunately, she said, doctors were able to obtain a “degree of seizure control” through medication.

“Not knowing what to expect, we sought early intervention services and later enrolled him in an excellent Easter Seals preschool program,” she said.

Sam, who has severe intellectual disabilities, attended public school until the age of 21, which is when people age out of the system in Pennsylvania.

She said it was difficult to find good, reliable caregivers, who were also capable of taking care of her other two children.

“We have two other children, one 2 years older than Sam and one 6 years younger,” she said. “We always strove to find a balance between attending to Sam's special needs and providing some sense of a 'normal' family life for the other kids. This demanded a lot of planning, energy and sacrifice over the years. The first years were the most trying when we were still hoping for a diagnosis that might lead to a specific therapy or cure.

“At a certain point, we learned to focus on making Sam as comfortable and content as possible rather than searching for an explanation. The SPEC parent group was a welcome local support for us when it started in 2000, as the public school system offered no facilitated group activities or networking for parents of children with special needs.”

McCoubrey, said the parent group began as a way for parents to connect with other parents of children with disabilities and get up-to-date information.

One of the challenges parents of children with special needs face is obtaining support services.

McCoubrey said that because of her son's profound level of intellectual disability, it was easier for them to get funding for services than it is for many people who are on the autism spectrum.

“There are thousands of people in Pennsylvania right now just waiting for services,” she said.

She said that once people with disabilities reach the age of 21, they no longer qualify for the educational support services they were receiving under the federal Individuals With Disabilities Education Act (IDEA).

She added that it is not uncommon for a parent to quite his or her job in order to provide their adult children with the 24-hour care they need.

“The transition can be very difficult and stressful,” she said. “It is one of the reasons why I continue to organize these meetings.

“At every meeting, there is someone who has a newly diagnosed baby or a child,” she added. “SPEC is a good place to get support from experienced families. As older parents of adult children with disabilities, we try to be available to listen and provide emotional support. We are proof that you can get through this and have a life. The people I have met through this group are amazing.”

She said she has met some of her best friends through the group over the years.

“ part of a special kind of community,” McCoubrey said.

“A lot of people who come to our meetings are from Chestnut Hill, Mt. Airy and Germantown, but we also draw people from Montgomery County and even Bucks County,” she said. “People will travel a long way once they find a meeting like mine. We always have a speaker because we feel that presenting people with accurate information and resources is an important half of what we are trying to do. The other half is networking and support.

“I don't claim to be an expert in the latest developments in social services and special education, but I know people who are experts in their field.”

April's guest speaker was Nancy Nowell, a certified sexuality educator and founder of Social Signals. Nowell said relationships and sexuality for people on the spectrum is different.

“You can't do the same things that you would do with an intellectually disabled person,” she said.

“You have to understand how people learn and how they learn differently. The first lesson I teach anyone I work with is 'What is a friend, an acquaintance and a stranger' because they don't know. And you can't teach anything if they don't understand the difference between a friend, an acquaintance and a stranger.”

Mt. Airy resident Ellen Murphey, 58, whose 15-year-old daughter was recently diagnosed with autism, said children with disabilities are more vulnerable to sexual abuse than other children.

“My biggest fear in the past and now is that someone would come up to my daughter and say, 'This is what friends do,' said Murphey, an adjunct English professor at Arcadia University. “They don't know when it's okay. They want so much to have a friend. They may do things that they are not really comfortable doing. They are vulnerable.”

Elkins Park resident Beth Miller, 42, who works as a mental health therapist, said the support group has provided her with the resources she needs to make sound decisions.

“You don't always have the time or energy to do the research necessary to find out what services are available,” she said. “You just need accurate, up-to-date information and you need it quickly. Some services are crucial for children to have when they are very young, when the brain is still forming. If you miss that window, it can cause delays and limit their ability to meet their full cognitive, emotional and physical potential.”

Miller, whose 17-year-old son has autism, said one of the nice things about this support group is that parents have children with a range of disabilities.

“SPEC is not just for parents of children with autism,” she said. “My hat really goes off to Jean because she has been here from day one. She is always there to listen. She understands how exhausting it can be to raise a child with special needs.”

McCoubrey said as a parent of a special needs child your job never really ends.

“It can be very isolating and lonely – especially for single parents,” she said. “A lot of people are doing this on their own. People are often just so relieved to hang out with people who understand exactly how they feel. Older parents of adult children with special needs, like myself, are proof that you can get through this.”

A mother of a 25-year-old son with autism, who preferred to remain anonymous because she lives in the area and doesn't want her son to read the article, agreed with her.

“My son, who works at the mall, recently got his driver's license,” she said. “For all of you who think there is no hope with that, it's not anything we ever dreamed would happen. We just kept on going to the next level saying 'What if?' As long as he was open to the idea, we never pushed it. He took the driver's license test 34 times.

Several people cheered, but one asked the woman “if she knew that there was a special test for people with autism or a nonverbal learning disorder?

“No,” said the woman, who never attended a SPEC meeting before. “I wish I learned about this group earlier.”

SPEC's next meeting will be held from 1 p.m. – 2:30 p.m. Saturday, May 21, at the Chestnut Hill Library, 8711 Germantown Ave. in Chestnut Hill. The support group meets during the school year and welcomes parents and caregivers of children of all ages with special needs. Come at 12:30 p.m. for light refreshments. For more information or to join the mailing list, email jean.mccoubrey@gmail.com or leave a message at 215-913-9027.

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