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February's Disabilities Month, and Autism Gets a Hearing
"I always knew something was wrong with Robyn," Hillary Walter of Elkins Park said of her "smart, friendly, sweet, outgoing" daughter -- a twin -- who didn't speak until she was 3. Then, about a year-and-a-half ago, the child was diagnosed with a form of autism.
"It's very hard sometimes," said Walter, especially when trying to explain to other parents why her twin girls can't always come over to play with their kids, or why they act differently.
Walter was one of some dozen people who gathered on Feb. 8 at the Auerbach Central Agency for Jewish Education in Melrose Park for a special program meant to raise awareness of disabilities, learning issues and inclusion in the community.
The event, which featured a screening of "Autism the Musical," an Emmy award-winning documentary, was sponsored by the Special Needs Consortium of Jewish Agencies.
This consortium was organized in late 2007 to bring together area agencies to share resources and information. More than a dozen participating agencies are part of this group, including ACAJE, the Jewish Federation of Greater Philadelphia, the Jewish Family and Children's Service, the Jewish Employment and Vocational Services, and JCHAI.
"Autism the Musical" follows five Los Angeles-area children with forms of the disability, along with their parents and their acting coach, capturing the struggles and triumphs of their family lives as they mount a stage production through an enterprise known as "The Miracle Project." The children collaborate to write a story, create songs and motion, and then publicly perform their original show.
Deborah Gettes, consultant for special-needs education at ACAJE, helped organize the screening and several other local programs during the month of February, which has been designated as National Jewish Disabilities Month by the Jewish Special Education International Consortium.
"The movie was the most realistic movie I've ever seen," stated Walter, in that it showed how parents first try to cope alone, but then realize that "you can't do this alone."
She credits her daughters' teachers at Congregation Adath Jeshurun preschool for working with Robyn and bringing in resources from the local community to help her. Robyn, now 51/2, receives speech and occupational therapy at A.J., as well as private speech therapy.
While both of her daughters are now enrolled in a small special education class at A.J. -- her other twin has a learning disability as well, diagnosed as Attention Deficit Hyperactivity Disorder -- Walter said that she worries about what it will be like come the fall, when her children move on to Cheltenham public schools, and what inclusion will mean for them there.
Meeting the concerns of parents who want the best for their children is something Gettes does every day at ACAJE.
She works with preschools, religious schools and synagogues in the community over issues of inclusion for children with special needs, which may include autism spectrum disorders -- such as classical autism and Asperger syndrome -- as well as attention deficit disorder.
The Need for Information
According to Gettes, in the past few years, the need for information concerning such disabilities has "exploded."
The numbers might explain why: Back in 1980, autism was a relatively rare disorder, with one in 10,000 children diagnosed in the United States, according to the Autism Society of America; now, that number is one in 150, and almost one in 94 boys.
No single known cause of autism exists, the society purports, though genetics and environmental factors, among others, are most often cited as reasons.
From December 2007 to May 2008, Gettes and ACAJE conducted a survey to gauge the services needed for the local special-needs population (see sidebar for more information). She found that social programming for teens with special needs was lacking in synagogues. She noted, however, that some area shuls are bringing sensitivity and awareness programs to their students.
"Bottom line is that we have to find out how we can help each child," said Gettes. "I think we are making progress."
Walter said that attending the film was the first time she came to something in the Jewish community where the focus was special needs.
She added that she's also looking for ways to keep her daughters involved in the Jewish community once they complete preschool.
Gettes, who has made the film available for other groups or synagogues, said that her goal is to have an inclusion committee at every area shul, with a member of that committee serving on all of the synagogue's other panels in order to make sure someone is advocating for those with special needs.
Said Gettes: "Synagogues need to become inclusive in many ways."
Special-Needs Survey Highlights
From late 2007 to early 2008, a local survey was conducted to help area Jewish agencies assess the services offered to the special-needs population. Here are some of the results:
· Of the 202 respondents, 62.3 percent of them have a son who has special needs; 35 percent have a daughter with special needs;
· Special needs most frequently cited: learning disabilities (51.5 percent), autism (28.2 percent), developmental delays (22.4 percent), speech (19 percent), emotional (16.1 percent);
· 27.3 percent used a Jewish organization for services for a family member with special needs; nearly 10 percent would use a Jewish organization if they knew who to contact.
Upcoming Events for Jewish Disabilities Awareness Month
· A concert for children with special needs this Sunday, Feb. 15, featuring Andi Joseph, aka "the Musical Mommy";
· Jewish Family and Children's Service of Greater Philadelphia's "Network" group will join with a Gratz College adult-education class to make "mishloach manot" baskets for children with special needs on Feb. 22;
· A JEVS program on Feb. 23 on applying to college, with a step-by-step how-to guide for students with autism spectrum disorders or learning differences.
For more information on the study, upcoming programs and resources, log on to: www.acaje.org/content/specialNeeds/ specialNeeds.shtml.