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Posted by sylvia on Monday, January 29, 2007 (10:03:29)
The Star Press
By JOHN CARLSON
MUNCIE - They call it being "on the spectrum," three words that can turn the world upside-down for parents of an autistic child.
It's a phrase that Belinda Hughes knows well.
A child on the spectrum has been identified as afflicted with autism and falls somewhere between mildly affected, like Belinda's six-year-old son Gabriel is, and severely affected.
Whatever the level, for these parents, life has likely changed forever.
"It bleeds over into everything you do," said the 36-year-old Central High School graduate, who holds a political science degree from Ball State University and formerly worked as a paralegal. "Socially, it's difficult."
Autism is defined by the World Health Organization as a developmental disability of the human central nervous system that specifically affects social interaction, communication, interests, imagination and activities.
What does that mean in practical terms?
"Every day is different," Belinda said, noting that Gabriel's unpredictable behavior may find her comforting her son on the floor of a Wal-Mart while he has an emotional meltdown. "It's that frustration in him that he can't communicate what he wants to communicate. ... People look at you and stare at you, but you can't be self-conscious. What's important is what you're teaching your child at that moment."
Gabriel, a kindergartner at Grisson Elementary School, is the middle of three sons Belinda has with her husband Willis, an Indiana State Trooper and Ball State criminal justice graduate. The other two are Benjamin, 9, and Jacob, 2.
'I felt pretty helpless'
A longtime member of the Army National Guard as well, Willis was serving as a platoon leader in Iraq when his son was diagnosed with autism, the culmination of a long and frustrating medical process.
The boy's pediatrician thought his condition was something he would outgrow. Even the physicians at Riley Hospital for Children didn't diagnosis the affliction.
"Gabe tested out of the autistic ranges," Belinda said. "It was a time when I felt pretty helpless."
It was another Muncie physician, Craig Hughes, who finally made the diagnosis, a move that opened up a world of services to help Gabriel and the family cope and treat the child's condition.
About this time, fortuitous encounters with Judi Minnear, an autism expert with Muncie Community Schools, and David McIntosh, a professor in Ball State's Department of Special Education, led to what has now become a focus of Belinda's life.
Born of her frustrating experience, INTERLOCK - its e-mail address is piecing2gether@cs.com - is a new support group Belinda started for the families of autistic children.
"We knew there were a lot of resources here," she explained, discussing why the organization was formed. "There had to be a way to make it cohesive for families. We wanted a way to tell families, 'These are what your options are.' I thought even if there was a suspicion of autism, parents ought to know what's ahead."
'Such a joy'
With McIntosh's support, the group meets once a month in the Ball State Student Center, providing not only informative speakers and services but also students in related fields like developmental education and speech and audiology to look after the kids, autistic and otherwise.
"It gives them practical experience with kids with autism," Belinda said.
Another participant, Lisa Compton, supplies the special "sensory products" - weighted blankets and vests, for example - that help break through the cognitive walls surrounding autistic kids, lending a sense of comfort to them.
The group has also begun fund-raising efforts, donating money to special education classes in the schools, and hopes to sponsor an Autism Walk on April 28 to raise more money.
Meanwhile, Willis - whom Belinda met years ago at a Halteman Village Baptist Church youth retreat - has also been working tirelessly, developing an autism education program that is going to be taught to fellow troopers at the Indiana State Police Academy.
"We're really excited about it," Belinda said, noting that autism is reaching epidemic proportions, with one Hoosier child in every 166 being afflicted.
Of those children, three out of four are boys. It's a sobering fact that makes Belinda happy to be doing what she started with INTERLOCK.
"It's a job," she said with a laugh, looking a little bit harried, "but it's such a joy."
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