Special Needs

 

Autistic children's families strive for normalcy

By Catherine Buday

Marlborough - Kevin Babcock, age 7, is carefully building a train with small wooden locomotives and freight cars. His small hands guide the finished train up and down the wood track. Then, with a triumphant smile, he brushes the train off the track for a spectacular derailment.

Like that train, Kevin, who has autism, needs a careful hand to stay on track. His parents, Patty and Greg, and his older brother Joe, 13, help him through written schedules, loving attention and praise for a job well done.

But Kevin can be easily derailed by loud noises, crowds and unpredictable situations. According to Patty, the family had to leave a movie theater before the movie began because Kevin was upset by the loud sound system. And a trip to Six Flags to see Kevin’s beloved Thomas the Tank Engine ended prematurely.

“He loves Thomas, but seeing it all in real life freaked him out,” she says. Kevin also struggles with every day interactions with his peers.

“He doesn’t have any friends,” she says. “Getting him to interact with peers is the biggest challenge. Social activities are very difficult. Birthday parties are difficult, especially if an activity has to be followed.”

April is Autism Awareness Month. According to the web site of the New England Center for Children, which serves autistic children, about one in 166 children will develop autism, a developmental disorder marked by impaired social interaction, communication problems with limited or no verbal communication, repetitive behaviors such as rocking or hand flapping, and difficulty with transitions.

Both Marlborough and Hudson have well-regarded special education programs for children with autism and other developmental problems. But parents must often scramble to fund extracurricular experiences, such as sports activities, because autistic kids typically need more trained staff on hand.

Shining Stars, a Marlborough organization for families affected by autism, has paid for sports camps and community outings, equipment for Marlborough’s public school programs for children with autism, and other activities.

“We take our funds and use them for socially appropriate activities for the kids,” said Jessie Lichter, an educator who advises Shining Stars. “These are activities that the kids wouldn’t normally be able to do because they need so much support. We’ve gone on field trips, taken Duck Tours in Boston, played miniature golf. It’s difficult for the parents to manage these things, especially if they have other children.”

In Hudson, the third annual Special Education PAC (Parent Advisory Council) fundraiser held March 28 helped raise money for programs that benefit all special education children, including those with autism. SEPAC funds help pay for Special Olympics events, Sunshine Camp in Hudson, and mentoring programs at  Hudson High School. 

Joe Babcock is working with George and Daniel Dilling, whose brother has autism, to sell autism awareness bracelets for $2 apiece in the Marlborough middle and high schools. Proceeds will go to Shining Stars. A benefit concert is planned for April 18; a yard sale for May 17. And Shining Stars collection cans have been placed in several Marlborough stores.

The Babcocks say that the Shining Stars programs give Kevin the chance to enjoy activities taken for granted by typical kids. “The sports camps have races, basketball and games like ‘duck duck goose,’” said Joe.

But many in the autism community worry that both money and acceptance dry up as the autistic children age. Maureen Gay, a Hudson mother whose son Tim, 16, has autism, said early intervention programs and dedicated teachers and therapists have helped Tim through his early years.   But she has seen fewer resources for older children.

“What concerns me is that a lot of the funding and the focus is going into diagnosing and getting younger kids the help they need,” she said. “What will happen to my son when he turns 21? He’ll need support and society is not ready for it.”

Already, Gay said her son is seeing how the world can be cruel.

“Where autism is becoming more visible in the world, a lot of things can happen,” she said. “For example, we had gone to the Omni Theater at Jordans to see the Polar Express, and Tim gets very excited in these settings. Girls sitting behind us were throwing popcorn at him and telling him to shut up. I explained to them that this boy has autism, and asked them to be more tolerant when someone acts that way.”

“We are going to be presented with more and more adults with autism,” she adds. “How are we going to handle them? What will happen when my son gets older and wants a girlfriend? How will society accept my child?”

Yet Tim, who now lives at a NECC residential facility during the week, has strengths that would astonish those who get to know him, Maureen says.

“Tim loves to sing and dance, and he memorizes music like you can’t imagine,” she said. “His best friend is a savant with music. It’s the most amazing thing to listen to him strum that guitar.”

Kevin Babcock recently learned the 50 states by playing with a puzzle, excels at memory games, and can recite the alphabet backwards, his mother said. His brother Joe’s friends are often amazed by Tim’s knowledge, and a few of the older neighborhood children enjoy playing with him.

But, like Gay, she worries about the future.

“Autism is a little more challenging than other disabilities that are more obvious,” she said. “You can’t look at Kevin and immediately understand that something is wrong. Kevin has an aide at school, and without that aide he’d probably go into a corner by himself at recess. 

“Autistic kids’ behavior is what some people would call weird. Kevin does a lot of hand-flapping and he grinds his teeth.”

Yet with his family’s support Kevin is making progress. He will be making his First Communion next week. His Leap Pad is teaching him states and other facts.

Both Maureen Gay and Patty Babcock said they are hoping that as autism awareness spreads, society will become more understanding of autism’s quirks and gifts.

“They are disabled,” said Gay, “but there is beauty in every kid, abled or disabled. April is just one month of autism awareness, but year-round, we need to remember that they are human and need to be treated that way.”

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