Special Family Weekend at UMM gives much-appreciated support

MACHIAS – Nearly everything about the Special Family Weekend that stretched from Friday through Sunday was cool for Bridgette Koch, a 13-year-old from Machias whose brother is autistic.

At the weekend’s site, the University of Maine at Machias, parents and children stayed two nights together in the newest dormitory on campus. They ate at the dining hall, used the indoor pool and, for Saturday evening entertainment, watched the Frog Mountain Puppeteers in the Performing Arts Center.

The one little problem for Koch, though, was that she didn’t get to travel very far for the event: “This is my hometown.”

The Special Family Weekend – designed for families with children who have special needs or disabilities – was moved this year to the UMM campus after being held its first 22 years on the Maine Maritime Academy campus in Castine.

Koch’s family is in its 10th year of attending the weekend, so staying in Machias removed the road trip element for the teenager.

Still, everything else was the same for the Koches and 24 other families, several of whom came from southern Maine.

For families attending for the first time, the event is welcoming and comfortable. For those returning, it feels like a reunion.

“It’s like a homecoming for Jesse,” Bob Bell of Edmunds said of his 22-year-old son, also autistic. “He’s a social butterfly and has to talk to everybody. He talks not just to the other kids, but to their parents and grandparents, too.”

For many of the families, the weekend – always the first weekend in June – is the only time that they can get away together all year. Some young ones with special needs and their siblings look forward to it as much as Christmas.

The 48 hours among others with so much in common becomes a place of understanding. It’s a time when many parents realize again they are not alone.

“Sometimes families can’t go anywhere that’s not wheelchair-accessible,” Bridgette’s mother, Barbara Koch, said. “Or sometimes they go into a grocery store and the child has a meltdown.

“You tell other parents here about that and they say, ‘Yeah, mmm-hmmm,’ because they know all about that.”

Koch works at the Washington County Children’s Program in Marshfield with children under 5 who have special needs. Every year at the families’ weekend, she gives a talk about American Sign Language.

The other professional who made a presentation to parents Saturday was Lynne Williams, a Bar Harbor lawyer who addressed estate planning for families with disabled family members.

With an additional doctorate in psychology, she served as a Maine special education hearing officer for six years and now works with families on legal matters.

While parents listened, their children played. The youngest ones were matched with child care volunteers in UMM’s day care center. The older ones used the gym and the pool or played board games and listened to music in the dorm’s recreation room.

“That’s Mariah Carey,” said Alex Niemann, 15, of Minot, naming a singer.

Niemann was playing a game with Sterling Salls, 16, of Bangor and a friend who provides respite care, Danielle Driscoll of Norway.

“I really like going to the gym and watching the puppets,” Niemann said.

He has been telling his teachers for weeks that he was coming to the Special Family Weekend.

A family of four pays about $150 for the weekend, but that doesn’t cover the cost of the experience. The full budget for the weekend falls between $10,000 and $12,000 each year, and the parents who organize it scramble each spring to raise the money.

State agencies covered about 95 percent of the cost when the weekends first began 23 years ago. Now, a $3,500 check from the Case Resolution Committee Region 1 of the Children’s Cabinet is the largest of any state agency contributions.

David Stockford, director of the Department of Education’s special services division, not only stops by each year to chat with the participants, but also provides a bit of funding.

The rest of the funding is made up of donations from area businesses and individuals.

“Tootsie Roll sales wear thin fast,” said Jane Bell, who served on the planning committee alongside Lillian Leighton of Franklin, Kerry and Darnell Salls of Bangor, Lynda Barnes of Jonesport and Jen Wood of Machias.

Because the weekend took place in Machias, the Washington County Children’s Program provided volunteers to work with the children. Some board members had made up baskets for families’ arrivals on Friday filled with local goodies, such as wild blueberries and clam chowder in a can.

But the part that made some parents feel especially glad to be back for the weekend was the tiny package of chocolates left on their pillows. “Welcome to UMM,” the message said.