Life with autistic child: Play to be staged at YSU

By Sean Barron

news@vindy.com

CHAMPION

If your child with autism orders pancakes from Red Lobster, learns they’re not on the menu and angrily spits in a lobster tank, what do you do?

The possible responses to such an unexpected reaction are countless, but if you’re like Rebecca Maher, you use the experience to write and stage a one-woman play.

“I wrote the play, not as a play at first, but it helped me cope with everything that happened when Alex was first diagnosed,” said Maher, referring to “Pancakes and a Lobster Tank: Living with Autism, Loving Alex,” which she first performed last April at Kent State University’s Trumbull Campus. She also performed one show in August at Rio Grande College in Gallipolis.

The next performance is Saturday eventing at Youngstown State University’s Kilcawley Center. Maher spoke recently at KSUTC about the play, as well as her 12-year-old son, Alex, a seventh-grader at Willard Middle School in Warren who was diagnosed with autism at age 2.

The audience is treated to an interesting tapestry of humor, frustration, anger, bewilderment and joy as Maher expresses what family trips to Walmart and other everyday occurrences were like with Alex, whose autism caused him to have limited social skills as well as rigid rules and meltdowns when those rules were violated.

For a while, Alex wanted to stop at every fast-food restaurant he passed in the car and became very upset if his wishes weren‘t met, Maher recalled. It wasn’t long before the family was taking routes to circumvent the local Burger King and McDonald’s, she continued.

“Pancakes” is not in chronological order because autism “is a constant building process,” she explained, adding that her son’s social-skills progress was often slow and uneven.

After Alex’s diagnosis, Maher read as much as she could on autism. It wasn’t long, however, before some of the reading material caused her to feel inadequate by providing advice and firsthand accounts she said oversimplified what life is like with a child who has the disorder.

Maher tried special diets and other techniques with her son, none of which led to a miracle, she added.

Maher hopes her audience will realize that raising such a child is a different — though not necessarily negative — life, she noted. It’s important to find ways to cope with a diagnosis as well as learn to laugh and make the best of it, she continued.

“I want the audience to feel it’s not hopeless; you need the right tools and to be smart and strong, and advocate for your child,” she advised. “No one is going to hold your hand.”

Also, it’s OK for parents to feel guilt and grief at times because raising a child on the autism spectrum “is a new normal,” Maher said.

Within the last year, Alex has made several breakthroughs such as initiating a greater number of spontaneous conversations and developing a sense of humor. For example, Alex, without prompting, recently asked his father, John, about his day at work, she recalled. In addition, Alex has fewer meltdowns, his mother added.

Maher said she has a positive relationship with the Warren city schools and is grateful Alex’s teacher understands his behavior and is in sync with his needs.