The following article by Jessica Cunha was featured in the October 25th edition of the Kanata Kourier Standard. We thank Diana Gibbons and Simy Illouze very much for bringing this amazing story to our attention.
‘Children with autism do not disappear from society and their needs do not go away’
One Kanata woman has started a day program for teenagers and adults with developmental delays, but she says more are needed for those with autism.
Simy Illouze launched the Kanata Language Arts Program in 2011 to address what she calls a gap in services for high-needs adults when she couldn’t find a day course that suited her son, Rafael.
Now, 22, Rafael is an autistic adult with limited options when it comes to educational opportunities, said Illouze.
“Until he was 21 years of age, Rafael attended the public school system…Just before his high school graduation, like all parents before me, I embarked upon the search for a day program for him,” she said. “This is Canada, not the USA; unfortunately we don’t have day programs for adults with autism only.”
She said she only found two programs in Ottawa with an educational component, but attendees had to be able to function in a ratio of one worker for every nine participants.
“That’s their criteria. It leaves a lot of people unable to attend,” she said.
“I was told that if my son was to ever have a meltdown, the kind that many adults with autism can still have, they would want permission to medicate as they neither had the proper staff ratio nor the expertise in the field to manage outbursts and behaviours.
“We do have programs for children with autism only. There are many private programs. But there’s nothing for adults or teens.”
So Illouze decided to create her own program.
Participants must attend with a support person, or a minimum ratio of one worker to two attendees for those who can function more independently.
Diana Gibbons ran into the same problem of finding a day program that suited her autistic 22-year-old son Christopher.
“We are a family like every other who have dreams for our children. Our dream for both our children is to be the best that they can be and live happy, meaningful lives. While our daughter has the ability to go out in the world and fulfill her own dreams, our son needs assistance,” said Gibbons.
She struggled to find a program that would suit Christopher, 22, a high-needs adult with autism, obsessive compulsive disorder, attention deficit hyperactivity disorder and sensory issues.
Then she discovered the Kanata Language Arts Program, which Christopher attends every Monday and Wednesday.
“This is a place where Chris fits in,” said Gibbons. “I’m fortunate I met Simy…If I didn’t know her we wouldn’t have the language arts program.”
October is Autism Awareness Month but it’s something that should be discussed year-round, said Gibbons.
“For people with autism, it’s hard to find programs with proper care,” she said. “The bottom line is he will never be able to function independently.”
Aside from the language arts program, Christopher also attends a fitness class twice a week with a personal care worker.
Most programs have a worker to participant ratio of one to five, which isn’t enough supervision for someone with high needs.
“On paper it looks great, it looks like there’s oodles and oodles of things,” said Gibbons about the programs offered for adults with developmental disabilities. “(But) there is nothing that really suits someone with as high needs as (Christopher).”
There are many options out there for children with autism, said Illouze, so it’s baffling that these programs don’t exist for adults.
“Children with autism do not disappear from society and their needs do not go away,” added Gibbons.
A qualified teacher, Illouze develops the literacy materials specifically for the students in the language arts program. Topics include: countries of the world, history and cultures, religious and non-religious holidays, plants and animals, science, nutrition and fitness, and movies.
“We want them to learn about the world and we don’t deny them this opportunity because of their special need,” she said. “My own son and the others, they have learned information they didn’t even learn in high school.
“When we cover cultures and the reasons for the holidays…this is all information that was never covered with them when they were in high school or primary grades because the system considered them not functional enough.”
She uses language-based games and crafts to help her students retain the information and they take “body breaks” to help keep them focused.
“It gives them a window into a world that was never opened for them before,” said Illouze. “They go home at the end of the day with some information that they will retain.”
There is no funding in place for the Kanata Language Arts Program.
“I offer my teaching and material preparation services pro bono two afternoons per week. Families contribute to the very low cost of rental for the premises rented through the City of Ottawa as well as minimal costs for craft materials,” said Illouze, adding, “It has been extremely rewarding for me to see the participants thrive in this environment.”
The Kanata Language Arts Program is open to all teens and adults with developmental delays, said Illouze, not just those with autism, and she’s hoping to attract more families who see the need for continued education.
“If there was demand out there it’s a course that could become five times a week,” said Illouze. “We really need people to come to this course if we want to survive.
“We have sent invitations to all the day programs for adults in the region, inviting them to send their participants…to our program.”
Gibbons said she hopes someone will step forward to help fund the program.
“This segment of the population does need more funding. There needs to be more for adults with autism.”
A big thank you to parent Diana Gibbons for sending me this article. For more information on the Kanata Language Arts Program please email Illouze at firstname.lastname@example.org.