Mom of autistic child creates place to turn
Frustrated by lack of support, she founds group
Tuesday, August 27, 2002
By ANDREW RYAN
Monitor staff
At 18 months, Emma Ninness decided she would only eat orange food. Cheez-Its. Carrots. Certain kinds of cheese. Developmentally, the pig-tailed girl with blue eyes regressed, crawling when she used to walk. Her once-budding vocabulary reverted to babble and the occasional, "Momma" or "Dadda." With the apparent steps backward came tantrums, shrill screams that pierced eardrums and the refusal to play with other children.
After a 90-minute session at Dartmouth-Hitchcock Medical Center in Lebanon, doctors told Joyce Ninness that her daughter has autism, a neurological disorder that impacts a child's communicative and social development.
"When you get a diagnosis like that, it is really devastating," said Ninness, who knew little about the disorder or what lay ahead. "I needed somebody to talk to, and there really wasn't anybody."
So Ninness, a 32-year-old mother of two from Concord, decided to create somewhere to turn. With the support of her family, school officials and Community Bridges, a Concord nonprofit that aids people with disabilities, Ninness started a support group for the parents of children who were recently diagnosed with autism.
Since January, Uniting Parents for Autism Awareness has met on the second Tuesday of each month. Currently, the five-member group meets in the Dame School cafeteria to talk about their struggles, applaud little victories and strategize about new ways to help their children.
In addition to wrestling with the daily challenges of autism, many parents are inadvertently dragged into the loneliness of their children's withdrawn world. Instead of mixing with other kids and parents at parks and playgrounds, autistic children shun social interaction for the comfort of regimented, neurotic routines, said Dr. Patricia Andrews, a developmental pediatrician at the Dartmouth-Hitchcock Medical Center. Outbursts and tantrums make visiting public places difficult.
While their children carefully arrange sticks or methodically match colors at home, mothers and fathers of autistic children are isolated from the organic support systems that develop among parents on the edges of swing sets and jungle gyms, parents said.
For this reason, many parents of autistic children don't get to have even those seemingly banal but irreplaceable conversations about toilet training and diaper rash ointment with other parents while they watch their children play. Meanwhile, for a parent grappling with a recent autism diagnosis, the questions are innumerable, ranging from "Why?" to "How do I calm my child down?"
"It's very hard," said Marlene Labrie, 29, of Concord who attends the support group. Her 4-year-old son A.J. was diagnosed with pervasive developmental disorder, a condition closely related to autism, in December of 2001. "It's a lonely place when people don't understand," she said.
In 1996, after her son Billy was diagnosed with autism, Martha Hickey, 36, of Bow, helped organize a support group for parents raising autistic children. However, as their children grew, the group's discussions followed, focusing more on adolescents with autism, as opposed to the struggles of younger children such as Emma who have just been diagnosed.
At Dame school, the parents talk about deep-pressure hugging as a technique to calm their children. Or, they weigh the benefits of the picture-exchange system, cards with illustrations of everyday objects and actions that help their children to communicate, and share tales of successful trips to the store.
Within the last decade, support groups for parents of autistic children have sprouted up across New Hampshire and the country, according to Dr. Lawrence Kaplan, the director of child development at Dartmouth-Hitchcock Medical Center. However, parents should use the groups as tools so they can help their children interact with kids and not limit their playmates to those who have autism.
For now, Ninness said the group has made tremendous strides. Outside of the monthly meetings and the telephone network that developed among members, the group is raising money to garner resources to help their children.
"It's a hard road, but we've come a long way," said Labrie. By sharing experiences, she said the parents are helping each other give their children better care. "I want people to look at my son and say, 'That's A.J.," she said, "not, 'That's the kid at my school who has' " pervasive developmental disorder