Like many mothers, Alice French of Ellsworth recently sent her 12-year-old son, Jack, back to school. Because Jack is severely autistic and needs round-the-clock care, however, for the past three years he has attended a Massachusetts school for autistic children 340 miles away. He comes home to her less than a dozen times a year.
French said parting with her son hasn’t gotten easier with practice.
“It’s the most unbelievably excruciating thing you can imagine,” she said.
But caring for Jack at home just isn’t a real option. For years, French tried while raising three other children, including Jack’s autistic twin sister. She hosted a parade of in-home workers and therapists to help Jack learn to take care of himself.
As he grew older, however, it became impossible to keep him safe. His tantrums turned violent, he loved to dismantle the fuse box, and he was a brilliant escape artist. He routinely sneaked out of the house to explore culverts, run down the middle of roads and get lost in the woods.
“I had to call search and rescue three times [in one] summer,” French said.
French chose to send him to the Massachusetts school because there are no residential facilities for severely autistic children in Maine. She tries to visit him as often as possible.
“I’ve put about 50,000 miles on my car in the last three years,” she said.
Situations like French’s are increasingly common, both in Maine and in the United States.
The Centers for Disease Control report that the rate of children with autism has risen from one in 10,000 in the 1970s, to one in 166 now. Maine Department of Education 2005 records show 1,473 autistic school-age children in-state, a jump of 218 children from the previous year. Sixty of these children live in Hancock County, 17 in Ellsworth.
There’s no consensus among scientists why such a rapid autism rate increase has occurred, but many autism activists blame the mercury found in some children’s vaccines.
Services for autistic children haven’t kept pace with the exploding autistic population. The few programs available Downeast focus on children under three, and even these have long waiting lists.
Cynthia Donaldson, former director a special-needs resource group called Special Children’s Friends, said services get thin for school-age autistic children.
“There are a lack of venues for them to be in a safe…developmental program all day long,” Donaldson said.
A New School
Shortly after Jack went away to school in 2003, French, her family and friends decided the only way to get him back to Ellsworth was to open their own residential school for autistic children. They and other parents of autistic children formed a non-profit organization called Justice for Autism with Community and Kindness (J.A.C.K) to make that school a reality.
The proposed school, the J.A.C.K Center for Child Development, would begin as a K-8 day school, offering curriculum and social skill training for ten autistic children and their families. Once established, it would then expand to include secondary education, and eventually a residential program.
In August of 2005, J.A.C.K held a pilot run of the residential program for three area children. French said it was very successful.
“That was really fun,” French said. “It was a mini-slice of the whole program pie.”
But funding for the school has proven elusive. The school would be eligible for state education funds and a variety of grants, but only once its doors are open. That means J.A.C.K members must somehow raise the funds for starting the school themselves.
“It’s definitely a Catch-22,” said French.
Jean-Marie Ivey, chair and business manager of J.A.C.K., said they need $120,000 to open the school and pay staff.
J.A.C.K. members have attempted to raise that money by various ways, from raffles and t-shirts to an annual Big Band Valentine dance. Their most successful fundraiser, Ivey said, is a bottle and can drive that has brought in $1000.
“We’re building a school by bottles and cans,” Ivey laughed.
But despite three years of fundraising, the organization is still more than $100,000 short of the start-up goal.
French admitted that scrounging for funding has been frustrating. She said many people initially think the school is just a mother’s pipedream, but in actuality, every detail of it has been planned out and budgeted, right down to the erasers.
“We have it down to the nuts and bolts,” she said. “We could get the place up and running in three months [with funding].”
Perhaps the most frustrating thing for French is that $120,000 is not an exorbitant figure in public education. Recently, she said, Ellsworth residents successfully raised a similar sum to build a new playground. But right now, $120,000 is what’s keeping Maine autistic children like Jack from going to school closer to home.
“I wish my child could be here to enjoy that playground,” she said.
For more information or to contribute to J.A.C.K, call 664-7557 or visit www.jacksfriends.org. They’re especially in need of a licensed special-needs facility or office space, either of which would make them eligible for new grants.