A SUMMER WITHOUT CAMP Families of autistic children lose respite
Melanie Groulx has severe autism. After years of hard work, the 17-year-old is able to string together two- and three-word sentences.
Melanie may lack verbal skills, but she is intensely attuned to schedules. Since March 12, there has been none of the things she expects to happen. No Saturday Fun Club, no school.
And now, maybe, no Kaleidoscope, a summer day program for families of children with autism that offers fun for the children and respite for their families.
“Melanie lives and breathes by the calendar,” said her mother, Carrie Groulx. “And now every week has a line through it that says ‘cancelled.’ I’m trying to give her something that she can hold on to.”
Children at Risk, the charity that runs Kaleidoscope, had everything it needed to run the program right down to the funding.
The bad news came two weeks ago when the Ottawa Catholic School Board, which had offered Kaleidoscope free rent for the past nine years, told Children at Risk that due to COVID-19, the board would not be allowing community use of space in its schools.
Now Children at Risk is scrambling to find a new location for the program.
Executive director Brenda Reisch has been hanging on to the hope that the program can still go ahead as the province opens up, allowing for small groups to gather if a new location can be found. Staffing wouldn’t be a problem as Reisch gets 10 job applications a day, she said.
Kaleidoscope has a ratio of one staff member for every child. She believes it will be possible to keep groups separated and dedicate a “hygiene team” to disinfect surfaces.
“We can’t let the program go. Families are suffering. The children are suffering,” said Reisch, whose 27-year-old son had autism.
She has been reaching out to other organizations, gyms and churches, anyone who might have the space to run the program.
“I’m trying to think outside the box. There has to be a building out there that suits us.”
The pandemic has been hard enough to understand for most people. It’s even harder to grasp for people with autism, said Carrie Groulx.
In the past, Carrie used “Oops” as a way to signal to Melanie that something on her calendar had to be rescheduled because of weather or other unforeseen circumstances. Melanie has now learned a dreaded new word: cancelled.
“At first she would just walk past the calendar and burst into tears,” Carrie said. “She’s attached to things that are familiar. The familiarity of Kaleidoscope to her meant fun times and no demands. Trips to the beach, riding a plasma car on the gym floor, jumping on a trampoline.”
Summer opportunities for the families of children with autism have evaporated in recent weeks.
The Ottawa-Carleton District School Board has cancelled its summer camps, including the summer learning program for students with autism and developmental delays.
Last month, CHEO announced that it was introducing emergency respite services for families but only until early summer when the program will be re-evaluated. The sessions are allotted in four- to sixhour blocks and can accommodate only 35 children a week.
A disproportionate number of people with autistic children are single parents who desperately need some time away from their children, Carrie said. And two-parent families also need respite.
Reisch estimates that Kaleidoscope served 150 families every summer. Some children attended for only one week; others signed up for all five weeks.
Children at Risk has already had to put its weekend respite program on hold. Between Kaleidoscope and cancelled programs and camps run by other organizations, hundreds of families will be missing out on respite, Reisch said.
“Families have been hanging in by their fingernails. They have been doing it since before March break. If you have breaks, you can make it through. If you don’t, it’s tough. There is next to nothing out there.”
Kaleidoscope offered respite for both Melanie and her family.
Melanie can sometimes have violent outbursts when she becomes frustrated, said her mother. She needs to be supervised at all times and also suffers from anxiety and obsessive-compulsive disorder.
For the past 10 weeks, Melanie has spent a lot of time on her exercise ball listening to music. There are occasional excursions outdoors. But Melanie doesn’t understand physical distancing and she has rarely gone beyond the boundaries of her family’s Kanata home since mid-March.
“All of the cancellations have been like a knife to the heart. Again and again and again,” said Carrie, who has been diagnosed with cancer and is awaiting news of when surgery will be scheduled.
“My daughter is a beautiful girl. And she’s happy. If you say, ‘Saturday Fun Club,’ you should see the smile on her face.”
There have been a lot of announcements for funding from different levels of government, Carrie notes. “Money can pay for respite. But if you don’t have the place, it doesn’t do any good.”
Families have been hanging in by their fingernails ... if you have breaks, you can make it through. If you don’t, it’s tough.