Squamish mom Anne Corrie watches as her daughter Grace climbs up the play structure ladder and slides down, laughing at the Eagle Wind playground in downtown Squamish.
Off the slide, three-year-old Grace runs up to her mother who speaks to her daughter in French and Grace responds in sign language that she is hungry.
Grace understands three languages: American Sign Language, English and French, Corrie says.
Grace was born with trisomy 21 – extra genetic material from chromosome 21.
The genetic disorder that manifests in various ways, including characteristic facial features, is often called Down syndrome, an out-of-date and inaccurate term, according to Corrie.
“She’s very able,” Corrie said of her daughter who was off again heading for the swing.
Corrie and another mom of a child with diverse needs, Kelsey Roberge, recently wrote to council calling for equal access to programming for their children at Brennan Park Recreation Centre.
“I guess I am disappointed that in 2016 this community hasn’t developed a program… for [special needs] kids,” she said, adding her daughter needs extra supervision, but could participate in most programs geared for children her age.
“Grace is not the first child to try to access services at Brennan Park without the support services in place,” Corrie said.
With district programs the current onus is on the parents of special needs children to hire support staff for their children and pay for it, Corrie explained.
“So you are paying twice,” she said. “You are paying for the support staff and for the camps.”
In other communities such as Delta, for example, there’s a leisure buddy program, “which is [for] high school students who get credit to come in and assist kids who need support,” Corrie said.
“I should not have to pay twice as much as anyone else to access the same services that they access.”
But having access without paying extra is not just about money in her case; It is about things being fair and inclusive, she said.
Roberge agrees. She has struggled to get her five-year-old daughter, Madison, into a swim program at Brennan Park.
“I have been wanting to register my daughter for swimming lessons at Brennan Park for the last two years, but there are no swimming lessons that are affordable, accessible or inclusive for my daughter,” Roberge said in a letter she addressed to Squamish council.
Madison has a rare genetic condition, Smith-Magenis Syndrome, which means the little girl has an intellectual disability, speech delays and some behaviour concerns. She needs one-on-one supervision all the time, Roberge said.
“It is really important that our children know how to swim. Just living in B.C. it is a necessity to life, as there is water everywhere,” Roberge told The Squamish Chief.
So far, Brennan Park staff have said the only option is for her daughter to take private swim lessons, according to Roberge, a registered nurse.
“The cost of private lessons is just not affordable for our family. We already have so many extra costs with a special needs child,” Roberge said. “Private lessons also don’t give my daughter the opportunity to be with her peers for social learning.”
At the July 26 council meeting, discussion of the mothers’ concerns was scheduled for an upcoming committee meeting in September. Parents and anyone interested have been invited to discuss the situation and possible solutions more with council and district staff.
Contacted for comment for this story, district staff said via email, “it would be premature to make any comments before fully understanding the landscape.”
Corrie and Roberge confirmed they would be attending the council meeting to express their concerns. Both said they had heard back from Mayor Patricia Heintzman quickly after sending their letters.
“I feel very hopeful that we can change things in this town,” Corrie said. “When there’s a will, there’s a way to do this.”
