This article was reprinted from the August 20, 2009 issue of The Inquirer and Mirror with permission from the newspaper.
Kim Horyn and resource center a lifeline for families dealing with autism
By Joshua Balling
I&M Assistant Editor
Kim Horyn knows first-hand the challenges of raising a child with special needs, and the isolation so many families feel while trying to do so.
Her daughter Rachel, now 22, grew up with developmental delays, and living on Nantucket, Horyn and her
husband Rob often felt there were few activities – except for Special Olympics – where Rachel would be truly welcome.
Now director of the Autism Speaks Nantucket Resource Center, Horyn heard similar stories after taking the job two years ago.
“In talking to families, it became very clear to me exactly how isolated they are. Their kids were not invited to birthday parties, or sleepovers, or play dates. They are isolated and so are their parents. Parents say they'd rather wait for the DVD to come out than go to the movies because they are so judged. Behavioral issues are one of the symptoms of autism. The children react to characters on the screen. It's embarrassing. They get annoyed looks from other parents, and their siblings are embarrassed. It's painful,” said Horyn.
Which is why one of her top priorities has been to coordinate social activities for children with autism and their families. This summer in particular has seen numerous events, including concerts, movies, surfing lessons and sailing excursions, all aimed at the special needs of children with autism.
“My contemporaries and I did not have any of these activities except for Special Olympics. I feel so proud that families have choices they can make, that there are so many wonderful organizations out there. From S.T.A.R., to Sea Pony Farm, to AccessSports, kids have so many adaptive programs today. These kids are being welcomed. It's so different than before. There's camaraderie. There's nothing like talking to someone else who gets it.”
Early on, however, Horyn's first mission was simply to provide as many on-island resources as possible for families dealing with autism.
“We started out by scheduling forums for families, because it's so expensive to go off-island for a two-hour forum. It's too much for many parents, but it's so important to access this information. They have enough on their plates, so we tried to bring the forums to them. We tapped on-island experts as well as experts all over New England to come in, provide information and answer questions. It's been very helpful to families.”
Autism is a neuro-biological developmental disorder characterized by impaired communication, severe deficits in social interaction and emotional detachment, affecting 1 in 150 children. The manifestations of autism cover a wide spectrum, ranging from people with severe impairments who may be silent, mentally disabled or locked into hand-flapping and rocking behaviors; to high-functioning individuals who may have active but distinctly odd social tendencies or narrowly-focused interests.
Autism Speaks was founded in 2005 by former NBC Universal CEO Bob Wright and his wife Suzanne, Nantucket summer residents.
Since starting Autism Speaks, the Wrights have been tireless advocates for autism research and awareness, lobbying for the passage of the Combating Autism Act, which President Bush signed into law in 2006, and which appropriated $1 billion for autism research over five years. The organization has also merged with the National Alliance for Autism Research to fund biomedical research to combat the disorder.
The Nantucket Autism Speaks Resource Center grew out of the success of the first Walk Now for Autism, held three years ago. This year's walk is set for Saturday morning, starting at Jetties Beach.
“Our mission is to serve as a resource for families impacted by autism,” said Horyn, who moved to Nantucket 26 years ago and worked in advertising, public relations and development before taking the job with Autism Speaks.
“Our ultimate goal is to try to improve the quality of their lives, however we can. We've expanded that to include all special needs in all of our activities. These families are isolated enough. There's enough segregation. With all the effort being put into providing these wonderful social and recreational activities, then they should be offered for all children with special needs.”
Horyn believes she's found the perfect job.
“I feel that I've been doing this for 22 years. In terms of being creative, and finding resources, I've been involved in special education for more than 20 years. Even though my daughter has different challenges, I've walked in these parents' shoes,” she said.
Looking toward the future, Autism Speaks hopes to start other resource centers around the country, Horyn said.
But on Nantucket, there's still much to be done.
“We're working on a mentoring program with the community school and the school system, where we're hoping to have high-school students and adults serve as a buddy to these individuals, to be a role model for appropriate behavior, to give the families a little bit of well-deserved respite. To be able to get a Coke with someone of the same sex who's older, who's a friend, would mean the world to these kids,” Horyn said.
“The other thing we've been doing is working with Monique Molloy, the significant needs teacher, to solicit businesses to bring on children with special needs as volunteers. What we're looking for is for the community to see they are just like us in many ways, that there shouldn't be a stigma,” she continued.
“Having an individual in our family with special needs, it has taught us so much. Our other children (Katherine, 18; and Will, 16) are very caring and sensitive individuals because of that.”
Horyn said above all else, she'd like families on Nantucket dealing with the challenges of special needs to know they are not alone.
“There is lots of hope and happiness. Anything we can do to help here, we'd like to,” she said.
For more information on the Autism Speaks Nantucket Resource Center, call (646) 341-3043, or e-mail firstname.lastname@example.org
To support a team in the Aug. 22 Nantucket Walk Now for Autism, log on to www.walknowforautism.org/Nantucket.