By: Jenny Tolep
“Hi Jenny, Hi Jenny, Hi Jenny.”
The sound of an expressive, energetic voice echoes as 6 year-old Maryellen greets a visitor in her home. After greeting her guest countless times, she proceeds to run, jump and climb while singing at full volume. This behavior is normal for Harrisonburg parents Marybeth and Keith Clarke because their daughter is diagnosed with autism.
It is a wide spectrum disorder affecting one in 88 children nationwide, under age 8. After one is diagnosed at age 2 or 3, it completely changes the course of a child’s life, as well as the parents’.
Autism is looked at under a spectrum because the severity and symptoms vary depending on the individual. Those with autism can have trouble communicating or socializing and can demonstrate repetitive behaviors, restricted interests, or sensory impairment.
The key is figuring out solutions that work best for each individual child.
When Marybeth noticed her daughter’s developmental delays at an early age she knew something wasn’t right.
“She was very hyperactive and would do absolutely nothing but run laps around our house,” said Marybeth.
Maryellen didn’t interact well with her peers and began “scripting.” Scripting is the reiteration of words from a commercial, television show or conversation and is common with children on the spectrum.
At age 3, Maryellen was diagnosed with autism, overwhelming news for any parent to hear.
“The first thing you have to do is get over yourself,” said Keith. “Because it’s not about the parents or how you feel about it, it’s about your child.”
The Clarkes now work to improve Maryellen’s functioning the best they can.
Technology has been a successful tool for their daughter. The iPad and television have allowed her to record and learn about communication and what to do in social situations.
“She wants to interact with her peers. She wants to, but just doesn’t have the right words to say or the appropriate time to say it,” said Keith.
The Clarkes redirect Maryellen’s behavioral tendencies and turn them into positive actions, specifically with her hyperactivity.
Instead of jumping on the couch, she’s encouraged to jump on her trampoline. Her parents take her on walks so she can get the movement she needs.
“That is a whole big ball of energy that needs somewhere to go,” said Marybeth.
Maryellen is just one of the many children in Harrisonburg and Rockingham County who have autism.
Another child is a nine year-old boy named Valor. He greets people with the repetitive, “Hi, hi, hi.” He grins wide, as he bounces up and down.
His mother and professor, Lynda Chandler Capaccio calls herself a “warrior mom.” She is a single working mother of two children, one of whom is diagnosed with severe autism.
“I’ve had to look at the world differently because I have him in my life,” said Capaccio.
She spends her free time researching the disorder and finding ways to cope with any behavioral issues that come with her son’s autism.
Capaccio encourages planning and preparation. Like others on the spectrum, Valor likes stability and regularity in his schedule. It’s important to inform and prepare him for anything out of the ordinary.
“I think I’d be a great chess player if I knew how to play the game,” said Capaccio with a laugh. “Just because I’ve learned to plan ahead so well.”
Using pictures is a successful way for a child to prepare, as those with autism are visual learners. Capaccio makes images for Valor using software called “Boardmaker,” which creates pictures and social stories.
Another of Valor’s struggles is inappropriate or aggressive behavior.
Like the Clarkes, Capaccio redirects Valor’s behavior to a more appropriate manner. When Valor wants to hit, he has learned to bang on his drum set. When he wants to bite, he has learned to bite a selected toy named “Smiley.”
According to special education professor and autism coordinator Amanda Armstrong, aggressive behavior occurs because children are trying to communicate something and they don’t know how else to express it.
“You can’t assume that a student with autism is being mean or bad because that’s not really their first instinct,” said Armstrong.
Children may want attention or something tangible. They might want to escape something, are frustrated or have a medical problem or sensory impairment.
When children are showing aggressive behavior, Armstrong suggests looking for things that calm them down. According to Armstrong, some children like to rock in a chair or drink a glass of water to relax.
“But you have to walk a really thin line because you don’t want to reinforce the behavior,” said Armstrong.
According to Armstrong, it is important to figure out the reason for the behavior and then prevent that behavior. Although behavioral issues may never completely diminish, they can improve through the various therapies.
Occupational therapy is a popular option because it helps develop everyday skills.
When it comes to children, their “occupation” is to play. Liz Richardson, director of Occupational Therapy Clinical Education Services at James Madison University, works with local children to develop proficiencies through play.
According to Richardson, sometimes the goal is for the child to learn to play with peers and other times it’s to learn daily skills and tasks. For example, building an obstacle course is a way for children to develop problem-solving skills.
A therapist’s job becomes easier when the children are ready to trust. This is a difficult task as children on the spectrum have limited social and communication skills.
“The most rewarding times are when that child looks at you and smiles,” said Richardson.
Occupational therapy, along with other programs such as speech therapy, applied behavior analysis and music therapy is a way for children to strengthen skills.
“People have actually moved to get therapy in this area,” said Keith.
In the local schools, special education teachers and assistants are readily available for kids on the spectrum.
Options for children include a one-on-one aid, a secluded classroom or a mainstream classroom that they can be taken out of if needed.
A Harrisonburg special education teacher, who chooses to remain anonymous claims, “every day is different.” Teachers and assistants need to be prepared for the meltdowns, along with milestone moments in which a child may ask for a pencil or look you in the eye for the first time.
“The hardest part is to meet everyone’s needs as those needs occur,” said the teacher.
According to Centers for Disease Control and Prevention, in 2002 one in 150 children were diagnosed with autism. The prevalence has significantly increased in the last 10 years and it grows more and more important to understand the amount of care those with autism need.
“It’s really becoming an epidemic,” said Keith.
There is no cure for the disorder. All parents can do is make the best life possible for their child.
As for Maryellen, she is now able to go to restaurants and on vacations, activities that seemed impossible a few years ago.
“She’s learned with her coping skills and with her therapy to enjoy those things, embrace those moments and challenge herself,” said Keith.
When Maryellen’s visitor leaves her home, she makes sure to say her last parting words. Keith chuckles as his daughter presses her face to the window screen, chanting “Bye, Bye, Bye” until the visitor reaches her car.
“The biggest reward of being a parent is knowing your actions are rewarded with unconditional love.”