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Parents of high-needs children ‘holding on by threads’ during pandemic


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Parents of high-needs children ‘holding on by threads’ during pandemic

Iman Duhman fears she’ll be unable to send her daughter to Kaleidoscope, a summer day program for children with autism. Children play at Children at Risk’s Kaleidoscope Respite Program in the summer of 2017. The respite care program provides is searching for a new home during the pandemic. (Children at Risk)As the global COVID-19 pandemic has…

Parents of high-needs children ‘holding on by threads’ during pandemic

Iman Duhman fears she’ll be unable to send her daughter to Kaleidoscope, a summer day program for children with autism. 

Children play at Children at Risk's Kaleidoscope Respite Program in the summer of 2017. The respite care program provides is searching for a new home during the pandemic. (Children at Risk)

As the global COVID-19 pandemic has thrown off most people's schedules, one mother says her 12-year-old with severe autism, anxiety, and obsessive-compulsive disorder needs structure returned to her life.

And now Iman Duhman fears she'll be unable to send her daughter, Lana, to the Kaleidoscope Respite Program, a summer day program for children with autism. 

“It's essential for Lana and for all the other autistic kids who used to attend this program because we are, as parents, beyond exhausted,” Duhman told CBC Radio's Ottawa Morning last week.

“We need a break. And what matters more is our children are really suffering from the lack of the consistency and routine. They need to go have fun.”

Kaleidoscope is in danger of being cancelled because the Ottawa Catholic School Board (OCSB) says it won't host it this year. The program, which was also nearly cancelled in 2019 because of a lack of provincial funding, would be entering its 10th year. 

An OCSB spokesperson wrote in an email to CBC News that boards are “transitioning their summer programs to distance-learning or virtual formats.”

“As a result, we will not be using our schools to support students in a workplace environment this summer.”

Charity searching for suitable home

The charity behind Kaleidoscope, which hosted approximately 70 children and adults with autism each day last year, has been trying to find a new home for the program.

Brenda Reisch, executive director of Children at Risk, said the programming provides a necessary service for children and a much-needed break for parents. 

“The parents are holding on by threads,” Reisch said.

“I even had to contact several families and a couple that are desperately needing the service. [They] just did not have the capacity even to speak. They were afraid they wouldn't be able to hold it together long enough.”

The Children at Risk charity usually operates its respite summer camp for high needs kids out of a school, but the pandemic has scuttled those plans. Now organizers are urgently searching for a new home for the camp. We talk the charity and a mother whose family relies on the camp. 7:55

Reisch has been reaching out to organizations like the City of Ottawa in an effort to find a suitable location. 

“We'd have a sanitation or hygiene crew,” Reisch said. “I mean, every time a child gets off the trampoline, it would have to be wiped down … but we're prepared to do that.”

Duhman called the program essential, noting her daughter has been throwing severe tantrums since her routines were shattered.

One tantrum was so bad, Duhman said, that she had to call the police.  

“If I want to weigh what my daughter is going [through] now — the mental breakdowns that she's having, the anxiety and the OCD — it's like going out of control,” she said.

“[As for] the risk of her getting COVID-19: I will rather send her and take that risk.”

CHEO is offering respite programs for children with autism or other ‘medically fragile' conditions, Dr. Michelle Ward says. (CBC)

CHEO hopes to better support parents, children 

Data about violence between children and parents is difficult to collect because of the stigma around talking about a child with aggressive tendencies, said Dr. Michelle Ward, a pediatrician and head of the child and youth protection division at CHEO, Ottawa's children's hospital.

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Parents won't necessarily call police when a child becomes violent, Ward told Ottawa Morning.

For most parents being quarantined at home with a child can be stressful at the best of times especially when the child copes through violence. We speak to a pediatrician and head of child and youth protection at CHEO about some new supports for families in Ottawa. 9:40

CHEO is offering respite programs for children with autism or other “medically fragile” conditions, Ward said.

The Kids Come First Health Team — a partnership between CHEO, The Children's Aid Society of Ottawa, Ottawa Public Health and local police — will also be holding daily meetings during the pandemic.

“We've been saying it not only takes a village to raise a child,” Ward said. “But it also takes a village to keep kids safe.” 

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