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'An awesome experience' Parents adjust to needs of autistic kids
Scott Campbell became involved in finding more resources for his son, Ian, when he and his wife moved to Northern Virginia after a military tour of duty in France.
Like many parents, Campbell was frustrated at the lack of appropriate resources and information he needed. He became active in several organizations for autistic parents in Northern Virginia and started teaching a course to parents, law enforcement and representatives of military health systems.
At Tuesday's Fauquier Hospital community workshop, “Autism Everyday: Helping families cope and grow,” Campbell spoke to a group of nearly 100 parents.
Autism has a range of conditions, making it hard for parents to understand. AS the number of children identified with autism continues to grow, so does our understanding.
“Autism doesn't just affect the child, “ Campbell said on Tuesday. “You don't have a kid with autism; you have a family with autism. Eventually, everything you do revolves around autism.”
That certainly hit home with at least one of the parents in the audience.
Janet Peters has 9 year old twins, Joseph and David. Joseph has autism and goes to all special education classes at C. Hunter Ritchie. David has Asperger's syndrome, a milder disorder on the autism spectrum. He is mainstreamed into regular classes.
Born prematurely, the twins had immediate medical issues. At 2 pounds 2 ounces, Joseph suffered from a burst brain cyst, and David, at 2 pounds 12 ounces, had acid reflux that put him in danger of aspiration. Although he weighed less, Joseph reached the five-pound minimum quickest and went home first.
Peters knew at the very beginning there would be challenges, yet, she said “this has been an awesome experience.”
She insists that having autistic children has kept her young.
“You see beauty through their eyes,” she said.
The mother of an older, grown son, Peters looks back at his childhood.
“You take a lot for granted when kids are growing up,” she said. Of the twins, “You count your blessings every day,” she added.
David, for instance, is usually able to express himself; Joseph sometimes just screams. Joseph doesn't understand danger, while David understands it, but lacks the skills to make social connections.
The twins do not interact with one another very much. While Joseph may attempt to approach his brother, David tunes him out.
The boys began receiving services before going to school. Once in school, services continued, but Joseph has a hard time leaving home to go. While both boys have a pretty set schedule now, Peters talked about the future.
“Middle school terrifies me,” she said.
Bullying is a issue that often comes up in those grades. Peters said that David is now getting help to cope with teasing and is handling it somewhat better. But as Peters learned at the hospital workshop, not only does the child have to cope with bullying and teasing, but he or she also needs to learn how to report it.
The safety of autistic children is one of Campbell's biggest concerns.
Autistic people often don't react well in emergencies. Not only may they not be able to communicate what happened, they may not even be able to say what hurts in case of illness or injury.
The autistic person may also not respond appropriately to first responders in a crisis. They may not respond to “stop” or other commands; they may flee when approached or appear to be a threat due to obsessive/compulsive or escalated behaviors. They may not recognize a badge, uniform or marked vehicle or understand what is expected of them if they do.
These are concerns for any parent, but they are escalated for parents of autistic children. Research has shown that these children have up to seven times more contacts with law enforcement than others, mostly as victims.
For more information, Campbell has placed resources on the Parents of Autistic Children of Northern Virginia's Web page (http://www.poac-nova.org/base.cgim?template).
E-mail the reporter: afelts@timespapers.com.
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