Houlton family with autistic son hopes to overcome stigma, raise awareness

HOULTON, Maine — Dominic Morse of Houlton likes biking, swimming, kayaking, movies, computers and toys that most 11-year-old boys do. But Dominic isn’t your typical boy; he is autistic.

“Looking back, there were a lot of things that were ‘off’ enough that if you strung them together you could see clearly that something was a little different with him,” said his mother Jacquie.

Though Dom hit the important milestones on time — crawled at 6 months, walked four days before his first birthday, was in the 95th percentile for height, weight and such — he didn’t speak.

“He would make noises, but he wouldn’t even attempt sounding out a word,” said Jacquie. “He made no eye contact and loved to flap his hands. He was a jumping bean … bounce, bounce, bounce everywhere just like Tigger.”

At his 2-year-old wellness check, Jacquie was told by her pediatrician not to be concerned because boys develop at a slower rate. So, she waited. At 3 years of age, still no speech. Jacquie once again heard how boys develop more slowly, but this time it wasn’t going to fly.

“My mom was convinced he had a hearing problem,” Jacquie said.

So the first step was a hearing evaluation.

“The first round of testing didn’t offer conclusive results because Dom didn’t know how to respond,” explained his mother. Then Jacquie learned about Child Development Services.

“This agency was a ticket to success,” she said. “Without them, we would have been stuck back in the land of no talking and no diagnosis.”

The CDS staff set up the next round of evaluations and, though they did not arrive at a conclusive diagnosis, coordinated services, including occupational and speech therapy, for Dom.

Jacquie said he learned to hold utensils and also worked on proprioception, which is the ability to sense the position and movement of body parts. “He didn’t feel like all of his body parts were connected,” she explained.

As part of his therapy for that, Dom now has a mini trampoline and a weighted blanket. “He sleeps with 30 extra pounds of weight on him every night,” his mother said.

But after all the evaluations, Dom still didn’t have an actual diagnosis. “He got the services because he qualified for them. But, for him to get what he really needed, we had to get an official diagnosis,” Jacquie said.

Researching her son’s symptoms prior to his 3-year-old physical, Jacquie discovered Dom had nine of the 13 markers for autism. That helped confirm her own suspicions and finally led to an official diagnosis and treatment.

After a physical evaluation, Dom started developmental and applied behavioral analysis therapies.

“Developmental therapy is basically a small school-type setting to work on his developmental skills,” said Jacquie. “ABA therapy is intense. It is all about repetition, similar to muscle memory. You keep repeating an action and it finally sinks in. I cannot stress how much teaching all of these therapists had to put into Dominic. He literally had to be taught how a typical 3-year-old communicates, plays and explores.”

At age 5, Dom finally did the most remarkable thing a mother hopes for when he uttered the word “mom.”

“I can’t even begin to tell you how I felt the first time he called me mom,” Jacquie said. “I still tear up thinking about it.”

The next hurdle to overcome was school.

“I really started to worry that Dominic would never have any friends,” said Jacquie. “I actually cried about it.”

But, that wouldn’t be the case.

“He still doesn’t know most of the kids’ names and 90 percent of the time I have to remind him to say ‘hi’ back. It continually amazes me how accepting everyone is of Dom, especially the young kids who know something isn’t quite right with him. But, they love him anyway,” she said.

“His teachers have done very well,” said Jacquie’s mother, Carmel Bowers.

Even though Dom has therapy and support, he is still not mainstreamed in school. He requires an aide in class and he goes to special education for certain subjects, said his mother.

“Although his skills aren’t up to par with his peers,” said his mother, “Josh [Dom’s stepfather] and I are incredibly proud of this boy. After all, if he wasn’t willing to do the work, he wouldn’t be where he is today.”

The family stressed that parents of autistic children should contact the school system so early intervention can be in place before the child gets to school.

“I am amazed at how many educators have no idea what autism is really all about,” Carmel said.

Dom’s family also stressed the need to alert law enforcement officials about persons in the community who are autistic.

An autistic person should register with state police or hometown police. Families who do register their loved one make it easier for authorities if the person gets lost or turned around. The police would have the person’s name, address, contact person, photo and phone number.

“No one knows what will set them off or how to calm the person down,” said Carmel. “Autistic people have actions others do not understand. Their senses are very acute.

“Autistic people can get physically violent when their world is out of kilter,” she added. “It’s fight or flight.”

Jacquie and Josh Morse also have another son, Jace, who is not autistic.

“Dom is very protective of Jace,” said Jacquie. “He forgets about himself. He is an amazing big brother.”

When Jacquie took Jace to his wellness check, she was given a sheet to fill out. Some of the questions on it were: Does your child flap his hands? Does he make eye contact? Dejavu.

“I cried and cried right there in the waiting room,” she said. “This little checklist is going to get so many children the help they need in a timely manner. If I had that checklist when Dom went to his wellness check at 18 months, he would have been on the road to typical sooner.”

“People in stores still watch,” said Carmel. “I think they are trying to figure out what it is all about. A lot of parents don’t handle that well. There are only a few parents we meet who treat autism for what it is … deal with it the best they can. Most deny it or are embarrassed by it.”

Carmel compares autism to having diabetes.

“You have to take insulin for a good quality of life,” she said. “If you don’t take the insulin, your quality of life stinks. Acknowledge your child has it, deal with it the best way doctors say how to and go on with your life.”

Jacquie jumped through medical, educational and financial hoops to get her son help.

“The earlier the intervention, the sooner the road to typical recovery will be,” she said.

Families of autistic children in the U.S. spend $300 billion out of pocket for treatment, noted Jacquie. A lot of insurance companies will not cover the therapies. In Maine, autisim therapies are only covered by MaineCare.

Today, the phrase “you’re austistic” is being used as demeaning like the words “retard” or “dummy” were years ago, Carmel said.

“That is giving the wrong impression,” she said. “We want to help raise awareness that calling someone autistic is not OK. There is nothing wrong with being autistic.”

“They are individuals who are wired different,” added Jacquie.

For Dom, his mother says he has a memory like an elephant. He understands the who, what and where, but it is the why that is a mystery.

“He understands emotions and feelings, but he can’t express them,” said Jacquie.

Dom faces more challenges in a given day than other boys of his own age. And, with that, Jacquie and her family carry many worries about Dom as he gets older.

“I find him very intelligent,” said Carmel. “I see Dom as a computer programmer or doing manual labor, something that is very routine, like a machinist or stocking shelves. I see him living in an enclosed community … going to the same coffee shop every morning, working five days a week, spaghetti for supper on Tuesday and steak on Wednesday … very Monk. The city would be hard. It’s over stimulating.”

In Maine, one in 67 children are diagnosed with some form of autism; nationally it is one in 88. Budget cuts are threatening services and Dom’s family hopes to raise awareness of autism in the community.

April is National Autism Awareness month. Locally, Dom’s family has raised more than $900 during the Walk for Autism the last couple of years. For the last three years, Autism Speaks has worked on a “Light It Up Blue” campaign. On April 2 — World Autism Day — people are encouraged to show their support for autistic children by keeping a blue light lit.

“At the Morse household, we light it up blue year round,” Jacquie added.

You can read Dominic’s complete story online at beemorsefarm.wordpress.com. His mother’s goal was for 100 people to read the blog in a month, but she ended up with more than 750 page views in 30 days. The Morses are organizing a “Light It Up Blue” campaign in Houlton next year. They hope to have at least 10 businesses and 30 homes lit up “Blue” April 2013 in support of Autism Awareness.