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10-year-old Neil talks about someday driving a car and going to college. His mother, Jayne, wants these things for him too. But more than any particular accomplishment, she simply hopes he is accepted and understood by his peers.
Neil has Autism Spectrum Disorder (ASD) and Jayne admits that after his diagnosis she was so busy ensuring he had the early intervention therapy he needed, she did not always recognize her own need for support and understanding.
That was until she found a support group provided by the Easter Seals New Hampshire Autism Spectrum Disorder Network’s Family Support Program.
“Early on I would have said I didn’t need to talk about it," she says. "I was just plugging away at getting him services. Now I know how nice it is to have a network of people who get it"
Neil first began to show symptoms of ASD at 13 months old.
He had been meeting all his developmental milestones and was a chatty, happy little boy. “Very suddenly, he wouldn’t look at anyone, he stopped talking, and he wouldn’t even let me hold him," recalls Jayne. "He just wanted to be left alone in his playpen.”
When Neil was 28 months old, he got an official diagnosis of what the family already knew. It was ASD.
They immediately began searching for therapies, eventually settling on Applied Behavior Analysis (ABA). ABA worked well for Neil (as proven by annual videotapes recording his progress) that it was adopted by his elementary school and now serves 18 children there.
“ABA provided Neil with important coping skills. He learned how to learn which has been the core of his success at school,” explains Jayne. “Other parents are amazed at the school’s program and ask how we got it.”
Jayne can also share the pros and cons of various vitamin treatments and medications they have tried including one that has recently helped Neil overcome a very disruptive vocal tic disorder. With the tic under control, Neil has blossomed socially. Acknowledging that not all of their attempts have been as successful, she says, “as a parent of a child with ASD who is very unhappy, you will almost sell your soul to make your child feel better.”
It is this empathy, mixed with optimism, that Jayne brings to the Family Support Group and she is glad that her experiences can help other families. Family Support Coordinator Elizabeth Webster says that reminding families they are not alone is a favorite theme of the group.
“Gathering with other caregivers who deal with the same issues becomes a lifeline for those sharing the same journey. Exchanging stories, ideas, solutions and emotional support is one of the most important things we can give to families,” says Webster, explaining why supporting the entire family in addition to providing services to the child with ASD is central to the mission of the Easter Seals New Hampshire Autism Spectrum Disorder Network.
For Jayne, the monthly group is a chance to just be herself. “You don’t have to be embarrassed by stories of odd behaviors because everyone there has a similar story. It puts you at ease for a couple of hours.”
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