Walk for Autism provides hope to families

The Bragg family of Newport will be among the participants in the eighth annual Walk for Autism Sunday in Bangor, which will benefit autistic people like four-year-old Josh, second from left. Pictured from left are Jenna, Josh, Jake, Jeremy, Debbie and Jules Bragg. They all play a part in maintaining a safe, nurturing environment for the family's youngest member.  BANGOR DAILY NEWS PHOTO BY CHRISTOPHER COUSINS
The Bragg family of Newport will be among the participants in the eighth annual Walk for Autism Sunday in Bangor, which will benefit autistic people like four-year-old Josh, second from left. Pictured from left are Jenna, Josh, Jake, Jeremy, Debbie and Jules Bragg. They all play a part in maintaining a safe, nurturing environment for the family's youngest member. BANGOR DAILY NEWS PHOTO BY CHRISTOPHER COUSINS
Posted April 23, 2010, at 9:28 p.m.

NEWPORT, Maine — Jeremy and Debbie Bragg have four children, so it didn’t take long for them to notice a major difference in their youngest son, Josh.

As a baby, Josh wasn’t doing many of the things parents look for in their children, such as holding his head up, rolling over and crawling. Perhaps most disturbingly, he wouldn’t make eye contact.

“He was delayed across the board,” said Jeremy Bragg. “I denied it for a while, but it became obvious he wasn’t hitting his milestones.”

After myriad tests and even a brain surgery that was called off when doctors realized Josh’s affliction wasn’t hydrocephalus, a swelling of the brain, Josh was diagnosed with autism at age 3. Now 4 years old, Josh still doesn’t talk and there is scant evidence that he understands much of what his parents or three siblings say. Josh, who rarely if ever sleeps through the night, needs constant supervision.

“We’ve had to be really creative about how to keep him contained,” said Jeremy. “It’s all about keeping him safe.”

Maine has the third-highest autism rate in the country, according to the website www.fightingautism.org. Among 8-year-olds, one in every 80 children is afflicted. In the 2008-09 school year, for which the most recent data were available, there were more than 2,200 people ages 3-22 with autism in Maine’s public schools.

Luckily for all those affected families, said Bragg, is the fact that there are numerous public and private institutions in Maine that are willing to help. That’s why Bragg, along with his family and friends, will participate in the annual Walk for Autism on Sunday in Bangor. Similar events are scheduled for Farmington and Biddeford.

In addition to being a commemoration of national Autism Awareness Month, the walks are the biggest fundraiser of the year for the Autism Society of Maine. For the Braggs, the walk is about spreading the most important commodity for a family with an autistic child: hope.

“The biggest reason we’re doing this is for anyone with safety concerns to realize there are things and groups out there that can help,” said Bragg.

Debbie Bragg said one of her goals for Josh is for him to be safe and recognize danger.

“He’ll just pull the oven door open without checking if it’s on or not,” she said. “You have to watch him all the time. It’s not so much a hardship, but it is tiring.”

Still, she says he’s a well-behaved kid “90 percent of the time.” Among his joys are swinging — which is why there’s a swing in the family room — and cuddling with family members. Recently, Josh began playing with his siblings after years of playing alone.

“That was a big milestone,” said Debbie.

Cathy Dionne, director of programs for the Autism Society of Maine, described her organization as a clearinghouse of services for people of all ages, ranging from a summer camp for children to one-on-one in-home consultations with autism experts. Dionne said the walk’s most important role is reaching out.

“It’s a way for families to come together and share experiences,” she said. “They don’t get to share that very often but they often leave the event feeling more hopeful and inspired.”

Registration for the approximately 2-mile Walk for Autism begins at 11 a.m. Sunday at Mt. Blue High School in Farmington, University of New England in Biddeford and at the University College of Bangor’s fitness center. Walkers who wish to collect money for the Autism Society of Maine can download pledge sheets at the organization’s website, www.asmonline.org.

“We really want to spread the word of hope that autism is treatable,” said Dionne.

The Braggs are unsure of what the future holds for their son. Jeremy Bragg, a baseball coach in the Newport area, doesn’t know whether Josh will ever swing a bat — or even watch one of his siblings swing a bat. More important, though, Jeremy Bragg yearns for a simple conversation with Josh.

“I can’t wait until the day I can talk to him,” he said. “That’s my biggest hope and I’ll never give up on him.”

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