Autism is a “battle worth winning”
BY HEATHER McLAUGHLIN
The Daily Gleaner
At 18 months , Donald and Heather Chamberlain’s son Matthew was walking and talking normally like his twin brother Samuel.
But by Matthew’s second birthday party, the Chamberlain’s and their older son Benjamin now 7, realized something was going terrilbly wrong.
“By his second birthday, it was like his circuits had shut down. He had no interest in his birthday, his presents nothing,” recalled Chamberlain, in Fredericton attending a conference on autistic spectrum disorder. “My wife being a nurse knew something was wrong.”
Chamberlain, a linesman with NB Power, figured his son was just becoming shy, tongue tied. He figured his child just had something a doctor could give him a pill for, he said.
After a neurological exam and an assessment by the pediatric team of the Stan Cassidy Centre for Rehabilitation in Fredericton, the Chamberlains received a diagnosis of autism.
The disorder of the central nervous system affects, language and cognitive development.
The translation in human terms is watching your child regress into a world where he or she can’t speak, becomes compulsively energized requiring virtual 24-hour supervision, and even aggressively hostile. The long-term prospect, without intervention, is likely a child who becomes an adult who must live in a long-term institution.
“He’d like be alone. He got fixated. He had no social skills. He’s non-verbal,” Chamberlain described his son.
The family home has become a fortress with locks on cupboards doors, no lamps because Matthew takes all the lightbulbs out or conversely moves about the house turning all the lights on because he’s fascinates by light, especially sunlight.
His older son doesn’t dare put up a hockey poster because Matthew will rip it down, fascinated by the faces, tearing it up until he finds his favourite. Speaking to Matthew is a combination of words and sign language.
“Matthew does not shut down. When he’s up, he never stops all day. He needs 100 percent supervision,” Chamberlain explained.
When he became ill with a mild infection, the child refused to swallow antibiotics.
While it sounds cruel, it took a week of strapping him into his high chair to keep him still and bribing him with a glass of his favourite pop to get him to drink his medication.
It was a battle worth winning, Chamberlain said.
Chamberlain and his household are now continuing that ongoing battle to give his child a shot at having a productive, normal future. It takes enormous energy, absolute structure and discipline, and the help of many experts.
Attending the Fredericton conference Friday, Chamberlain and Doris Mallaley, the teaching assistant who works with a now five-year old Matthew who attends kindergarten at Lakefield Elementary School, were making notes and listening to the professionals.
Applied Behavioral Analysis(ABA) is the best-known and most successful therapy for autistic children. It’s a system of teaching a child to communicate and behave through a system of prompts and rewards. It is structured and specific and if applied consistently, Chamberlain may one day see his son speak, read, write, graduate from school and work at a job.
Friday’s conference was for health professionals, teachers, parents, occupational therapists, early intervention workers, anyone and everyone who can help a child like Matthew.
So far, there’s no provincial government funding for applied behavioral analysis. Nor is there any recognized training program for workers who need to have practical hands-on training in the specialized therapy.
Chamberlain said community support and fundraising has helped him bolster the family income to hire six University of New Brunswick Saint John psychology students who were willing to learn the teaching methods and work with his son on a daily basis. The cost is at $35,000 to date and counting.
Up to 15 health professionals, including Fredericton clinical psychologist Dr. Paul McDonnell, supervise and monitor Matthew’s progress.
For Mallaley who works with Matthew in the public school system, there are glimmers of hope.
“When he first came to school, he was ripping things just to watch them fall down,” Mallaley said.
Now, using the techniques of behavioral analysis, she’s amazed at what is being accomplished.