29 Apr Playing for health
Just as Susan Schober was about to complete her advanced degree in chemical engineering at USC, she was presented with two life-changing events at once: the offer of a prestigious graduate fellowship, and the discovery that she was pregnant with her first child.
Determined not to let her education and career be derailed by her new responsibilities as a single mother, Schober’s family, including her mother Mary, committed to helping out so Schober could finish her education and provide the best future for herself and her child.
The family would have to pull together even more when, at age 2, Schober’s child, Eva, was diagnosed with autism.
Mary Schober sought every resource she could to learn how she could best help her granddaughter. It’s been four years since the diagnosis, and the family still faces uncertainty and tremendous challenges.
“We have had to work hard to get Eva every bit of help she’s received,” Mary Schober says. Though girls are in the minority with autism, Eva is considered quite challenged. “We’ve heard terms such as ‘severe’ and ‘profoundly autistic.’”
Whatever the diagnosis, Eva has her own unique set of issues, as does every child on the spectrum. This makes understanding how to treat and care for autistic children a continual guessing game, which puts tremendous strain on families.
Lisa Ackerman, founder and executive director of Talk About Curing Autism (TACA), knows all too well the confusion families face when their child is diagnosed with autism. She experienced it all when her son was diagnosed in 1999, at the age of 2. The organization, which provides a forum where families can connect and support each other, has membership of more than 31,000 families across the nation.
“The numbers are sobering,” Ackerman says. “1 in 50 U.S. children have autism. TACA serves over 4,000 children and their families living with autism in Orange County alone.”
And, as with so many other issues, the poor are particularly vulnerable.
“Low-income families are often late to diagnose their kids,” Ackerman says. “Typically they are diagnosed 1-2 years later than their more affluent counterparts, losing valuable early-intervention time. This missed intervention time can make a huge difference in a child’s life.”
After Eva’s diagnosis, Mary Schober turned to resources at TACA and other agencies to educate herself as much as possible.
“I went to many seminars and my goal was to make sure we did everything to make her the most independent person she could be,” Schober says.
“We know that socialization is very important, but that in itself is very difficult because you never know when or how Eva might act out. Every time we go into a situation with other families or children, there is a chance they won’t understand her reactions.”
Linda Hunter, senior director of education and chief operating officer of Pretend City Children’s Museum in Irvine, agrees.
“More than anything, you need your child to be immersed in social situations that might draw him or her out,” Hunter says. “But every time you take them into a social environment, you risk sensory overload and meltdowns.”
Pretend City has developed a revolutionary program that provides valuable opportunities for children on the autism spectrum to be in a social-play therapy setting that also benefits parents and siblings not on the spectrum, since the isolation affects them all – and it’s free.
“Play – especially make-believe and pretend play – is how children learn,” says Hunter. “It is how we learn to experiment, explore, how we learn to work in groups and individually.”
Part of the program includes clinicians and social worker volunteers who work with children and their families in various pretend settings that mirror real life.
Great care was taken to develop an environment that is not overly stimulating. There is even a room where children can go calm down if they need to before joining the group again. Results have been so positive that after regular visitation, some children have become comfortable enough that they are able to go to the museum on non-autism event days to play alongside their peers.
“Autism can be isolating for families,” says Ackerman. “Socialization events provide tremendous benefits for families with a child on the spectrum. We place a strong emphasis on creating a community that offers opportunities to meet and interact with other families who understand their challenges in a safe environment.”
To learn more about how you can help, visit ConnectOC.org or contact the organizations directly at tacanow.org and pretendcity.org.
Shelley Hoss is president of the Orange County Community Foundation in Newport Beach. She can be reached at Shelley.Hoss@oc-cf.org.