Parents happy with province's support, but want more.
By Tony Kiritsis
Published Thursday May 24th, 2007
Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he's unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn't care, more concerned about how he will get down.
Just by looking at Ryan as he cautiously approaches the slide, toward Todd's coaxing voice, it's as if there's nothing wrong. But, behind his blue eyes there's something different about him and unlike other four-year olds his age, he can't talk. If he could, he would probably tell you exactly what's wrong.
Instead, he will pace around the room, his hands sometimes flapping, offering the impression he's trying to master a one-handed clap.
At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he's scared and frustrated and needs to be heard.
Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.
This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.
Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.
Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.
In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.
"We thought it was the end of the world," says Todd, when he and Tamara discovered Ryan was autistic.
Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.
"When your child is autistic it's a fight you're in for life. Some people do give up and I don't criticize them," says Harold Doherty, a local lawyer and autism activist.
Doherty has been fighting for better services on the part of his family, and others in the community.
Karen Hammel says she understands the strain that's placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she's placed his needs first.
"We don't eat out, we don't go to movies," says Karen. "House repairs haven't been taken care of. We just go without things that most people don't go without."
Like many parents of children with disorders Todd and Tamara were in denial about Ryan's condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.
"We were pissed at ourselves for not picking up on it," says Todd. "It was as if we failed as parents." Autism is a disorder with one face but wearing multiple masks to conceal its identity.
Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.
Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.
Since the diagnosis the Downey's have found support in Fredericton's autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.
It's here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.
Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.
Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.
When the centre's current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.
Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.
The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.
In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.
"It pretty much seems that 20 hours a week is rock bottom," Dr. McDonnell says. "Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results." Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, "We came up with 20 hours, and obviously that's at the lower end, but the other monies and services that children can tap into is what we call integrated daycare." Bulmer says parent involvement at home also contributes to the child's therapy and learning.
Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren't trained therapists.
"It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area," says Todd. "We've seen serious improvement and that makes us happy." The therapy Ryan and other children his age receive may be adequate, but more could always be done.
"You do the intensive intervention up front because that's where you're guaranteed to get the most improvement and the most change," Bulmer says.
The money the Downey's receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.
Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.
"We've already cashed in some retirement money to help him and we'll probably have to cash more," says Tamara.
Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.
"I'm most worried about the school system," Todd says. "I think he's going to be ready for school, but is the school going to be ready for him?"
Harold Doherty believes the system isn't prepared to handle these students and changes need to be made. "The system says teachers teach and that's it."
Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.
With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.
Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.
Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick's College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.
"What's the cost going to be when you have a child that's not appropriately educated? You're putting money into teaching them pre-school and when they go to school, if that support isn't continued, there's actually the chance some kids could digress," Tamara says.
New Brunswick's Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.
"If it's at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year," says Lamrock.
As parents like the Downeys fight for their son's well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.
"The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can't independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later," Tamara says.
Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren't integrating. She has taken it upon herself to integrate her son into society.
Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.
As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can't achieve.
"For older individuals the need is proper residential care," says Doherty. "Unless you can care for your child, you have to place them in a group home."
Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.
"Someday it would be nice if adults with autism had some type of program that would be available to them and their families," says Pelletier. While Family and Community Services' long-term care plan provides Christopher with a care worker and a disability pension, it's still not enough.
"I'm currently fighting to get clinical supervision covered," Karen says. The cost for this service is approximately $10,000 a year.
As it stands, the Department of Family and Community Services and the Department of Health and Wellness won't cover clinical supervision because it's considered an indirect service.
Exhausting all her governmental avenues, if a resolution isn't achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.
The Downey's have wrestled and settled with a lot in a short period of time, even though they're in the early stages of the fight for Ryan's future.
"We've come to terms that this is how it's going to be," Todd says. "I've come to terms that I'm probably not going to have a career. We've come to terms that we aren't having another child."
The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.
Karen knows she will always be fighting for Christopher. One day she won't be able to take care of him anymore and wonders what will happen to him in the future.
"No matter what it is you're looking for, you always just have to keep repeating and repeating it to the government. After a while...you feel so beaten down," Karen says.
The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.
The future for adults like Christopher would be bleak, if it weren't for the determination of parents like Karen, who are currently laying the groundwork for the next generation.