By Jennifer E. O’Brien
If you have questions about your preschooler with special needs, the best resource is by far other parents with special needs preschoolers.
Kristi Finnigan of Newburgh, a mother to two children with special needs, definitely knows the value of connecting with other parents.
Finnigan, whose older son is 7 and diagnosed on the Autism Spectrum, recalls that after he was diagnosed at age four she initially blamed herself. She also recalls seeking out information and resources on the local level.
“It’s hard when you don’t know who to look for or where to look,” she said. “I went to all the wrong places in the beginning, until I finally got connected with some other moms and we just share all the information.”
Finnigan initially started attending monthly workshops, which would cover topics like making the transition from preschool to kindergarten, at her son’s preschool. At one of those workshops, another parent stood up and shared information about an online support group for parents. Finnigan says she did not join immediately; she did not have her son’s diagnosis yet and describes herself as having been “probably a little in denial.”
That soon changed, though. “Once I got his diagnosis and knew that I needed a lot more help and a lot more information, I started going on there,” she says.
Now she’s found the online support group to be the perfect place to post questions or ask for suggestions. Members of the group have children ranging in age from newborn to 18, so it’s likely someone else has already been through your situation. While accompanying a friend to an appointment at an Independent Living Center, Finnigan spied a small sign for the Children Development Center.
“That was a big step for me and a big jumping off point. I got a lot of information, a lot of help and direction from them,” explains Finnigan. They were able to help her secure grant money for special equipment for her son and told Finnigan about Medicaid Service Coordination, which now provides her with 14 hours of respite and residential habilitation services a week.
Laura Carfi, a Regional Coordinator for Parent to Parent, a statewide program that connects parents who are in similar situations, knows how important that respite care can be to families exhausted from providing round-the-clock care to a special needs child.
Autism warning signs.
According to Carfi, one of the best things about picking up the phone and contacting Parent to Parent is that the person who answers the phone (and everyone who works there) also has a child with special needs, so there is an immediate connection. Parent to Parent has an extensive “parent database” and is able to match families who call in with other families facing similar situations. After Parent to Parent contacts the match family and gets approval, they put the two families in contact. Carfi says that “what happens next is up to them.”
Carfi, who has a 14-year-old son with Down syndrome, clearly recalls her own feelings of being overwhelmed when he was born. Her first connection with a support group came in the form of a booklet left at the hospital for her by Aim High, an Albany-based resource center for parents and families of children with Down’s syndrome. Carfi describes the simple booklet as “a blessing” because it provided her with information and resources that she could immediately use. Before her son was three months old, Early Intervention services were in place.
Andrea Steindorf of New Windsor has a 4-year-old daughter who is diagnosed on the Autism spectrum. Along with chatting online, group members meet up for play dates and arrange times for moms to get out. Steindorf likens the experience to the coffee klatches of previous generations, but instead of trading recipes, these moms swap the names of neurologists.
Terrence Blackwell, a Board Certified Behavior Analyst who works as a consultant for Easter Seals Hudson Valley, says the benefits of parent support groups can go beyond the personal and actually enter the political arena.
“Look at the parent support groups from the ‘60s for children who had Down syndrome,” he says. “They were largely responsible for the changes to the Special Ed laws of the country requiring appropriate individualized education of children in the least restrictive setting.”
While the political changes caused by advocating parents benefit all our children, most parents join support groups for the day-to-day struggles that arise. Carfi said hat she has had many professionals and providers involved in her son’s life, and she takes all the help and advice they can offer.
However, she adds, “when I really want to pick a brain, I call a parent.”
Jennifer O’Brien is a freelance writer for Hudson Valley Parent.