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Kyle Masannat, 3, snuggles with his mom, Nancy,
Kyle laughs as his mom tickles him in their Stafford County home. Kyle, who has autism, does not speak but uses sign language. Kyle Masannat, 3, has autism. His mom, Nancy, attends meetings with a new parent support group. |
By KATHLEEN LEWIS
Kimberly Hill of Spotsylvania didn't have a network to go to when her son was diagnosed with autism.
So she started a support group.
Kathleen Bufalari, a speech therapist with the Rehabilitation and Wellness Center of Virginia, helped her get the Autism Support Group of Fredericksburg started and serves as a co-facilitator.
About 36 families are involved.
The group offers speakers and discussions about autism-related subjects.
Autism is a disorder that affects children's ability to communicate and interact with others. They have trouble learning basic skills, and they need routine and structure.
Today, one in 166 children is diagnosed with autism.
To some, autism is a disorder that needs to be managed. To others, it's a disease that needs to be treated.
In addition to their parenting role, parents of children with autism often become researchers, advocates and activists.
Nancy Masannat admits she hasn't been an activist.
"Just living the day to day is enough," says the south Stafford resident. She finds herself in a tug-of-war between meeting extreme needs for her son, who has autism, and having something left over for her daughter, who doesn't.
Parents who come to the support group are looking for answers from the pool of experiences represented in the group.
Masannat and her husband, Richard, are hoping someone can help them find a good Applied Behavioral Analysis therapist.
ABA therapy teaches social, language and life skills through repetition and positive reinforcement.
Unlike many insurance plans, the Masannat's plan covered the in-home therapy.
The White Oak-area couple were pleased with the progress 3-year-old Kyle was making.
But in July, they received a notice from the company telling them to find another therapist because the one they had been using was missing certification requirements.
It amounted to a year's worth of mentoring time, explained Nancy.
This means nothing to her. She has seen her son regain developmental ground. That's what matters.
Before 18 months, Kyle was on target developmentally. Afterward, within three weeks of his MMR vaccine, he lost 20 words, stopped giving eye contact and kisses and didn't want to be touched, his mother said.
From that time, the Masannats have done everything they can to rebuild their son's communication, cognitive and life skills.
The eye contact and kisses have returned.
Kyle's words are few; mostly he babbles. But the behavioral therapy is teaching him to communicate 3-year-old needs using sign language. Emily, 5, wants to learn the language too, so she can talk to her brother.
Instead of emptying the drawer full of cups and throwing them about the kitchen the way he used to, Kyle tells his mother he is thirsty by tapping his hand to his lips while holding up three fingers to represent the letter "W" and symbol for "water."
He is also learning to tie his shoes and brush his teeth.
Yet Kyle still requires routine. His Saturday trip to the Spotsylvania Mall, he knows. He enjoys the quarter rides and goes to Wendy's for a hamburger patty, says Richard. But an unexpected jaunt to the grocery store can push Kyle over the edge and can result in what Nancy describes as a meltdown.
"They very much desire routine and structure and sameness, and that includes the people providing services for them," said Nancy, speaking in general about children with autism.
The Masannats think that if insurance providers really understood the needs of children with autism, the company wouldn't expect them to jump right into a working relationship with another therapist.
So instead of choosing a new one from the list , the couple is paying out of pocket to keep the momentum of Kyle's progress going.
Meanwhile, they're hoping to find out about the quality of services offered by some of the therapists on their list from parents in the group.
Mary Marrs attends the group hoping to be able to share what she has learned with other parents. She hopes they will benefit from the treatment option that has proven successful for Shannan, her 4-year-old.
Marrs, of Old Plank Road in Spotsylvania, considers herself fortunate to have a mother who is knowledgeable about holistic health. So when Marrs' daughter Shannan developed symptoms of autism, shortly after she received immunizations, Marrs and her mother read material describing a link between the disorder and toxicity by heavy metals.
Marrs found a doctor in Richmond who takes the biomedical approach to treating autism. The treatment includes removing heavy metals such as mercury through a process known as chelation and controlling the protein buildup by keeping the child on a gluten- and casein-free diet.
Gluten is the protein in wheat, oats, rye and barley, and casein is milk protein.
Marrs describes her daughter as recovered.
At Shannan's worst, she was down on hands and knees rocking and shrieking. Today, Marrs describes her daughter as very vocal, speaking in full sentences, interacting well with others and eating a variety of foods.
"I want to be a help to other parents," said Marrs.
Hill, the group's founder, lives off Leavells Road below Courthouse Road and has three children. Two are diagnosed with autism: Nicholas, 2, and Hope, 4. Nicholas was 22 months old when Hill first learned that his understanding and expression delays were red flags for autism.
She accepted the information with the casualness that one might accept nearsightedness in a child. But that all changed when her emotions caught up with her.
"In the morning, I couldn't get out of bed," said Hill.
But the sense of devastation didn't last long. Like the other parents who learn to accept and live with autism, she got up and and went on to do what needed to be done.
The Autism Support Group of Fredericksburg meets the second Friday of the month at 7 p.m. The meetings take place at the Rehabilitation and Wellness Center of Virginia, next to Mary Washington Hospital.
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