Parents of autistic son seek to raise awareness, funds

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DRACUT — Like any parents, Denise and John Rocha wanted nothing more than to hear their baby boy utter his first words.

They waited 15 months. Nothing.

“We just wanted to hear Joshua say ‘momma’ or ‘daddy,'” said Denise.

Joshua, who is now 5, was evaluated by specialists who said he was behind developmentally. The word autism popped up frequently, but there was no clear diagnosis.

“He qualified for services,” said his mother. “We brought him to a therapist twice a week for two hours.”

By the time Joshua was 18 months old, he could form some words, but his parents had to guess what he was trying to say. But the boy displayed other skills.

“He could pick out letters of the alphabet without any problem,” said John. “We’d line up blocks and ask Joshua to find the letter ‘L’, for instance, and he’d point right to it. And he knew all his colors.”

“We thought he was a genius,” Denise said.

His speech therapist gently told John and Denise that Joshua’s advanced intelligence might not be a good thing.

“It sent up a red flag,” Denise said.

Pregnant with a second child, the couple brought Joshua to North Shore ARC, a nonprofit autism-support center in Danvers, for an evaluation.

“I had had enough wondering, is it autism or isn’t it?” Denise said.

Joshua was diagnosed with PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified, one of five categories of autism.

“The last thing I wanted to do was put a label on him,” said John. “But we would do whatever it took to get him some help.”

According to statistics from the Autism Society of America, autism is the fastest growing developmental disability in the country, with an annual growth between 10 and 17 percent.

One in 150 children is born with autism. The annual economic impact on autism is $90 billion, with 90 percent of the costs in adult services. The ASA predicts that number will rise to $200 billion to $400 billion in 10 years. Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.

Therapists and specialists have been working with Joshua and the family, which includes 3-year-old Isabella, for three years now. John and Denise have noticed marked progress.

“He was a lot more autistic than he is today,” said Denise. “He’s matured. He’s learned coping strategies. He still gets stoic sometimes and goes into his own world, but it’s become a lot easier to pull him back out.”

Therapists worked with him for more than a month just teaching him not to run off.

“He was a bolter,” his mother said. “If we just let his hand go for a split second, he’d be gone. I had a new baby. How was I supposed to chase him?”

Joshua still has little quirks that sometimes make his parents laugh. His fixation with signs, for instance.

“He would label everything in the house with paper and tape,” John said. “The door, the bathroom, the stove. Then we discovered sticky notes. Much better.”

He also has a penchant for greeting guests and bringing them to his toys.

“He had an allergic reaction to nuts, and we called 911,” said his mother. “When the policeman showed up, Joshua grabbed this big man by the finger and led him to his toys. He wanted the officer to get on the floor and play with him. He’s just so lovable and friendly, but that can also be a dangerous thing.”

The Rochas know that they have it a lot better than some families with autistic children.

“We have challenges, but we’re fortunate compared to some families,” said John Rocha. “We can interact with Joshua. He can express himself. There are parents who cannot reach their own kids. Parents who have no support.”

The couple formed a small team last year and joined the Autism Speaks Greater Boston Walk Now for Autism. They will walk again this year when the event takes place on Oct. 19 at Suffolk Downs in East Boston. Their team name is “Stride with Pride for Joshua.”

“But we wanted to do something bigger,” Denise said.

In preparation for the Walk for Autism, the Rochas will have a booth at Dracut Old Home Day on Sept. 6. They hope to raise some money for autism research and in addition to getting people to participate; they will provide information on the disorder.

“We want to raise some money, sure, but we want to raise awareness,” said John. “Autism is the fastest growing developmental disorder in the country, and it gets the least amount of funding.”

The Rochas will solicit donations and are raffling off a 16GB Apple iPod Touch. The drawing will take place on Oct. 1, and those who enter at Old Home Day will double their chances.

For more information or to make a donation, visit www.AutismSpeaks.org., or e-mail Stridewithpride4joshua@comcast.net.