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A common bond
Group provides support, compassion for parents of children with Asperger's syndrome
Sunday, December 05, 2004

It could have been a book club gathering or a gang of friends out for a morning gab. But it was neither.

The session in a back room at Cranberry Public Library was a meeting of the minds, and the hearts and souls, of parents bound by the commonality of a misunderstood, hard-to-diagnose neurological disorder known as Asperger's syndrome.

They call themselves Cranberry Cares, a combination support group, advocacy agency and social club. Foremost, however, the group is a coalition of parents whose children have been diagnosed with high-functioning autism or Asperger's, an autism-spectrum disorder characterized by an inability to understand social nuances and abstract concepts.

On this recent Friday morning, a dozen or so parents are hearing from a speech therapist/pathologist while they sip coffee and munch on muffins.

"Is it right to insist that an autistic child look someone in the eye during a conversation?" one parent asks.

"What's the best way to explain to the highly concrete Asperger's child such highly abstract idioms as, 'It's raining cats and dogs?' " another queries.

There are many questions and a lot of knowing laughter. There's note-taking and chitchatting.

And they'll do it again next month when they gather for their regular meeting.

"It's become an important group. Its members are known to be hardworking parents who go the distance to advocate for their kids and educate their community,'' said Marie Mambuca, family support coordinator for the Advisory Board of Autism and Related Disorders, or Aboard.

Based in Etna, the nonprofit agency provides financial and administrative support to Cranberry Cares and 54 other support groups in 35 counties in Pennsylvania.

Though the group has about 20 members, a Web site, an annual budget, monthly speakers with a range of expertise and a burgeoning affiliation with a national student organization, Cranberry Cares began humbly with one mom who had the energy and the inspiration to "do something."

Mary Limbacher, of Cranberry's Autumn Hill neighborhood, seems to have been fashioned to handle not only the parenting of a son with Asperger's but the shepherding of a support group.

The 43-year-old native of Hampton had to struggle with family hardships as a youngster. When she was 7, her mother died at age 42 of ovarian cancer. Her older brother, two years her senior, had Down syndrome. A younger sister was awkward and often the victim of school bullying. She and her siblings were cared for by a housekeeper "with a heart like a lump of coal."

Limbacher said hers was a childhood with some heavy doses of reality. "I saw firsthand how wrong it is to be cold to the needs of other people. I think I learned to feel responsible, to have a sense that if nobody else was going to stand up, I would," she said.

Limbacher went to Duquesne University to study journalism and marketing, cultivated her skill as a decorative artist, married her husband of 19 years, John, and gave birth to two sons -- ninth-grader Andy, 14, and sixth-grader Daniel, 12.

Her husband, who works for a financial software company, was supportive; her children were perfect; life was good.

Then her oldest son started second grade and Limbacher soon was being told he was disruptive, disrespectful and uncooperative.

She was shocked. Her son had always been happy and bright. In fact, he was tested in the first grade and found to be intellectually gifted.

"I had this tremendous empty feeling,'' she said, recalling her meeting with her son's teacher.

Then began a litany of meetings, first with teachers and other educational professionals, then with doctors and psychologists.

At some point in the midst of all the meetings, Limbacher had an epiphany.

"I had been expecting someone else to lead me through this, to figure it all out. These were the experts. But I finally realized that there wasn't going to be someone else who would make it all right. I was going to have to do something myself,'' she said.

Following up on some leads given her by a school psychologist who mentioned Asperger's, she began researching on the Internet and at the library and felt she was reading about her son.

There were more doctor appointments and teacher meetings and battles with insurance companies. Finally, three years later, halfway through fifth grade, Andy Limbacher received a diagnosis of Asperger's.

"We felt relief and also a little bit of sadness to finally know,'' his mother said.

Next came the search for help. "I made hundreds of phone calls and I felt like I was being mocked. Nobody knew what it was,'' she said.

Part of the trouble was that medical and education professionals still were learning about Asperger's, a disorder that was first listed in the Diagnostic and Statistical Manual IV in 1995.

Within a year, though, she had lined up services within the school setting and had established a team of experts she could go to for help.

That's when she began looking for some support for herself. "I attended a wonderful support group for parents of autistic children, but I realized very quickly that our needs were different,'' Limbacher recalled.

Mambuca of the Aboard group agreed. "The autistic child is very different from the high-functioning autistic and Asperger's,'' said Mambuca, who is the mother of an autistic child. "The autistic child is insulated to a great extent because they don't perceive how others perceive them. They don't care. The Asperger's or high-functioning autistic know they are different. And that presents a whole set of different circumstances for the parent.''

Limbacher said she was feeling a sense of peace in her personal life at this point and she felt called to do something for someone else.

"If I could survive all that I had survived on the road to Andy's diagnosis without anybody, then I could surely put together a support group,'' she said.

Soon afterward, she bumped into a woman at a doctor's office who commented on a book Limbacher was carrying. Not long afterward, that woman -- Linda McCormick, of Zelienople, whose 11-year-old son, Michael, has Asperger's -- had volunteered to "co-facilitate" the new support group. Cranberry Cares, which stands for Compassionate Asperger's Parents Reaching for Enrichment and Support, was born.

They put notes on bulletin boards and called counselors. The first meeting was in October 2001 in Limbacher's home with three women.

"We felt this instant connection, and the people I connect with just become family,'' Limbacher said.

Mambuca said it's the beauty of support groups.

"As a parent, I can walk into a group of other parents and know that their house is as normal or as abnormal as mine. I don't have to say a lot. I don't have to explain. We understand each other,'' she said.

Carol Kelleher calls Cranberry Cares her "oasis."

The Cranberry mother of three sons, including 11-year-old Jack, who has been diagnosed with high-functioning autism, has been attending meetings from the start.

"I'll never forget the first meeting I went to. There was a table full of literature and information on services and I felt so thankful,'' said Kelleher, who said it took five years to get a diagnosis for her son.

She said she had tried a support group for parents of kids with autism before Cranberry Cares was formed, but she also found immediately that the "issues are so different. With high-functioning autism and Asperger's, they're in regular classrooms where they have to deal with social interaction problems. It presents a whole different set of issues for us as parents,'' she said.

Kelleher said Cranberry Cares has given her advocacy, support and friendship. "I just can't say enough about Mary Limbacher and what she's done for the Asperger's community,'' Kelleher said.

During the past three years, the group has grown to about 20 members from an area as far-reaching as the Sarver section of Buffalo Township, the North Side and Butler. It's sanctioned by Aboard and receives an annual allocation of $1,200. And the group has been successful in obtaining a $300 state grant from the Pennsylvania Parents and Caregivers Resource Network. The money was used to buy books for the Cranberry Library and to purchase a subscription to a magazine about autism and Asperger's.

While Cranberry Cares' primary purposes are to educate the community and support its members, the group is working hard to provide social opportunities for its members' children. Limbacher recently received a commitment of help from the Seneca Valley Key Club.

"We've become so much more than I ever expected we'd become,'' Limbacher said.

Andy Limbacher is in ninth grade and does well in school, though there are good days and bad. The same goes for his mother. But, even on the bad days, she said, she feels a sense of purpose.

"I really feel like being given a child with Asperger's was being given opportunity to handle something that I really could handle. I don't always handle it well. I get sad. But, I handle it. That's what we're all doing at Cranberry Cares. The group gives us a chance to do it together."

First published on December 5, 2004 at 12:00 am
Karen Kane can be reached at kkane@post-gazette.com or 724-772-9180.