KITTERY - Chelsey Boston is nervous about her son Dylan's first day of preschool.
"I know he's ready but what about me?" she asked the three other moms gathered for the January meeting of the Special Needs Parent Network.
At the group's monthly meetings, parents get together and share stories of negotiating with doctors and schools, learn about services and give advice in an informal way, and, perhaps most importantly, are able to just be around other parents of special needs children.
Boston's son Dylan, whom she believes will eventually be diagnosed with autism, will soon turn three, making him eligible to attend the Waban Center in Sanford, a school where teachers and therapists work with children with special needs to help with their social skills and prepare them for elementary school.
"I'll feel comfortable knowing he can interact with kids," said Boston, but she was worried about him being away from his parents for the first time in his life.
Marcia Flinkstrom remembered similar feelings when her daughter, who is now eight years old, first started school.
"When Kayla went to a nursery school in York, I was a basket case," she said.
Flinkstrom explained how much harder it is for a parent to let their child go when they aren't able to communicate about their day. At the time she started school, Kayla, who was diagnosed with Down syndrome when she was a baby, was nonverbal.
"They're vulnerable," she said. "She can't come home and reliably tell you what happened during the day. It's not reliable information."
Flinkstrom, who lives in South Berwick, started the support group while earning her Master's degree in social work in response to a lack of support groups in the Southern Maine area. They have been meeting since April of 2007, on the last Friday of every month at 7 p.m. at the Family Resource Center on Route 1 in Kittery. The group welcomes new members who are free to drop in.
When she returned home after her first meeting, Boston said her husband asked her how it went. She told him that after talking with other parents who have children with special needs, "You feel normal."
Usually, she said, "I feel like I have to explain him. People will go, ‘Oh, he'll start talking soon, boys are late bloomers.'"
"There's a lot of misunderstanding," Flinkstrom explained. "You don't get it unless you're living it."
During the meeting, the moms shared a Dunkin' Donuts box of decaffeinated coffee and talked about some of the issues they faced.
Lisa Richard said she recently questioned whether she needed to tell her church's childcare program about her daughter's special needs. Though she believed Lily would be fine, she was worried that if she didn't say anything something could happen while she was gone.
"I don't know," she said. "Something as simple as that makes it tough sometimes."
Parents also talked about the stereotypes that confront their children.
"I hate every movie where they portray autism," said Diane Kulyak, whose seven-year-old daughter Emily has autism. "I'll never watch ‘Rain Man' again."
Kulyak recalled going to a PTA meeting and feeling uncomfortable because of the number of times the cost of special education came up.
"I'm sorry my kid's going to coast extra money," she said, but added, "In the long run, everybody benefits from her being there. I'm just convinced of that. This is what community is about. We take care of everybody."
Getting together also means that the parents can share tips about what questions to ask their child's school and how to find services that aren't always readily apparent. Most of the time parents have to find out this information on their own.
"Every parent has to reinvent the wheel," said Flinkstrom.
"You have to hunt," Boston agreed.
As the support group nears its first anniversary, Flinkstrom said they are looking to find a way to provide childcare so that spouses can also attend. She is also planning to put together activities for the children, such as ballet class, yoga and puppet shows by South Berwick puppeteer Marla Evans.
Group members also understand the significance of developmental steps that might seem trivial to other parents.
"People who are living with special needs celebrate smaller things," Flinkstrom said.
"Lily's almost 5," said Richard. "She just learned to jump. It's a big deal. We share the small triumphs."
The next meeting of the Special Needs Parent Network will take place at 7 p.m. on Friday, Feb. 29, at the Family Resource Center, 518 Route 1, Kittery.
For more information, e-mail Marcia Flinkstrom at mflinkstrom@comcast.net or call the Family Resource Center at 451-9291.
