A labor of love that never ends

Being a parent is a difficult responsibility for anyone, of course, but raising a child with a disability adds layers of unanticipated and often baffling challenges that others can only imagine.

Jane Bell found out in 1980, when her second son, Jesse, was born with autism. She and her husband, Bob, the ninth generation of Bells to run Tide Mill Farm in the unorganized Down East territory of Edmunds, had arrived at the Blue Hill Hospital on that frigid winter’s night with the usual high expectations.

“We thought we were going to push that baby out and then go home to our farm in a couple of days as a family of four,” Bell said this week. “But that wasn’t meant to be.”

An hour after his “picture-perfect birth,” the baby suffered a seizure and was rushed by ambulance to the neonatal care unit at Eastern Maine Medical Center in Bangor. The next morning, a second seizure “heralded our entrance to the world of children with special needs,” as Bell would write later, “an unexpected, foreign place in which Jesse needed immediate critical care a long way from our home.”

And so began the years of exhausting though hopeful struggle for Jesse’s well-being, the emotional and financial roller coaster of endless trips to the doctor, constant testing, one diagnosis replaced with another, meetings with school officials, behavioral problems, disheartening childhood developmental delays and a general sense for the Bells of being utterly lost and alone much of the time.

“It’s all very unfamiliar, uncharted territory with no information for parents and often very little tolerance for people who act differently,” said Bell, whose son, now 24, is a high school graduate and a volunteer firefighter in Whiting who travels with his father to every call. “It’s hard and it’s ongoing.”

But when Jesse was 2, the directors of the early childhood-intervention agencies in Penobscot, Hancock and Washington counties came up with an idea to give people like the Bells a brief but welcomed break in their demanding daily routines. Their plan was to create some kind of weekend retreat where families raising children with special needs of any sort could get together to have some fun while others helped care for their children and enjoy the company of people who all shared similar burdens and experiences. The directors gave the Bells and a few other families some money and asked them if they would try to put together such a getaway weekend.

They did, to great success, and they’ve been doing it ever since through a combination of state funds, private contributions, and nominal registration fees.

The 22nd annual Special Family Weekend will be held June 3-5 at the Maine Maritime Academy in Castine. Bell, who remains a planning board member and fund-raiser, said the event draws about 25 to 30 families a year from all over the state seeking rest and relaxation, reassurance, empathy and a chance to re-energize themselves for the tough days they face back home.

“This weekend was started so people could get together and cheer on one another,” Bell said. “We have wonderful child-care volunteers, so we get a chance to watch the faces of our children having fun as well as the faces of parents who finally have a few moments when they can just sit still and not have to chase their children around the house.”

The families live dormitory-style and MMA staff prepares their communal meals, some of which invariably wind up scattered across the tile floor. No problem for this group, however, which has learned to take most upheavals in stride.

“There is an unconditional acceptance of what your child may be doing differently,” she said. “Parents don’t have to make any explanations for what their child is doing, and it’s a chance for the children to have some independence in a safe setting.”

The camaraderie and understanding among families is bestowed generously and automatically, she said. These parents may never get to watch their kids hit a home run in a Little League game, for instance, or play basketball at the Bangor Auditorium, but cherished childhood moments are made in other arenas, too.

“You’re thankful when your child takes that first step, as Jesse did at the age of 31/2,” Bell said. “You appreciate the little things.”

She called the weekend a kind of minivacation to another country where old friends and new – some who have to pack up pretty much everything they own to be there – gather for the same purpose.

“There are hugs and high-fives all around because most of us haven’t seen each other for a year,” she said. “We have activities like volleyball, basketball, swimming, walks along the shore and entertainment by the Frog Town Mountain Puppeteers from the Blue Hill area.”

While the children are being looked after, the parents are free to attend workshops aimed at strengthening an educational process that never ends. This year, a member of the Maine Parent Federation will explain how the No Child Left Behind Act applies to special-needs students. A mother who works with the Washington County children’s program will conduct a workshop on sign language, which the Bells used with Jesse until he was able to speak.

“Leaving on Sunday afternoon is always hard,” Bell said. “We’ve shared so much with one another, so much support and understanding, that we’re charged up physically and emotionally for the long year ahead. We know we need to let go, of course, but it’s difficult. The weekend truly means a lot.”

Although the registration deadline for this year’s event is passed, anyone interested in attending the 2006 Special Family Weekend or making a contribution is requested to call coordinator Lillian Leighton, in Franklin, at 565-2774.