Contributed Kayla Baldwin, 11, conducts a science experiment during a lesson at Glenrosa Elementary.

World Down Syndrome Day: The up side of Down

A Kelowna family’s journey with Down Syndrome: ‘There is tremendous beauty in these kids’

Kayla Baldwin is like a lot of Grade 6 students in her West Kelowna elementary school.

She uses her imagination, she is adept at using her iPad and she takes part in regular classroom activities.

As a student with Down syndrome, Kayla is helped by her education assistant, Judy Pollington, as well as her classmates, who take turns holding her hand when she plays basketball. Being in the classroom has helped her anticipate group settings and become more comfortable with louder noises. And it has helped her classmates as well.

“Kayla’s a valuable member of our classroom who just happens to have Down syndrome. It’s important for the students who haven’t had the opportunity to encounter all different types of people across the classroom. From Kayla, the class can learn empathy, kindness, and patience as well,” said teacher Hillary DeSerranno.

Pollington said the students are good role models for her. She is currently the only student with Down syndrome at the elementary school.

Today marks World Down Syndrome Day, a day to celebrate those born with the disorder. According to a recent study, conducted by the federal government, the number of Down syndrome births in Canada was stable between 2005 and 2013 with an average of 16 births out of 10,000.

“Down syndrome is the most frequently occurring chromosomal congenital anomaly in Canada,” the study said. “Down syndrome is caused by the presence of an extra chromosome 21. It is one of the most common congenital anomalies worldwide, and approximately 1 in 750 live-born babies in Canada has Down syndrome.

Since 2013 and the introduction of the non-invasive prenatal screening, the number of babies born with Down syndrome has remained stable in B.C.

Non-invasive prenatal genetic testing is offered to women in B.C. to determine fetus abnormalities. It can determine genetic disorders in the first trimester of pregnancy. The tests include an ultrasound and blood test, according to Perinatal Services BC.

But to Kayla’s mother Janelle Baldwin, that wouldn’t be an option. She believes Kayla is a gift and, if given the choice, she would deny the non-invasive testing.

“I think that kids are made the way they are, and I think there’s value in differences,” she said. “I think with having testing like that, you run a risk of ruining something beautiful because kids with Down syndrome might have a variety of cognitive function, but they have so much to give. Their hearts are tremendous.”

Janelle and her husband Sandy have learned from their experiences with Kayla.

“You learn a lot of patience and grace. You know, she loves everybody, she loves them. She hugs them in the mall.”

Janelle felt the stigma around the genetic disorder for the first time when she brought her newborn baby into the hospital after giving birth to her in a car.

“We thought it would be like Grey’s Anatomy,” she said, adding she expected more after delivering Kayla in such a unique situation, but they were told to head to the maternity ward. Janelle suspected Kayla had Down syndrome, but her nurses couldn’t confirm it, saying they had to wait for a doctor.

“It was like she was an exhibit. Everyone kept coming in and staring at her and leaving.”

After the diagnosis, she was offered counselling which she declined. “(The diagnosis) shouldn’t sound like a funeral,” she said. “People focus on the disability instead of the ability and that, to me, is a tragedy because they add so much. I don’t know what I would do without Kayla.”

Kayla was offered far more support in Calgary, where she was born, than in Kelowna, Janelle said.

“They have a special Down syndrome clinic at the Children’s Hospital so you get intervention right away for physio, occupational therapy, speech,” she said.

To get support in B.C., aside from her teacher’s assistant, Kayla would have to go through a psychological test, which costs between $1,500 to $2,000. That’s because they won’t use the information from Alberta that proves she has Down syndrome, said Janelle.

There is an 18 month wait list to get the test, “and I think that’s terrible.”

In Calgary, you start with the Down syndrome team, but through a private preparation program, children are supported into their teen years, she said.

There is a support group in Kelowna, Down Syndrome Family Connection, through Kelowna Community Resources, but its primary focus is on those from birth to age six, said Janelle.

As Kayla, 11, enters her preteen years, Janelle worries about the options available for her.

“It took us over a year to get into a pediatrician too,” she said.

For World Down Syndrome Day, Janelle hopes to bring to light the issues of the stigma around Down syndrome and calls on those in the medical system to be more positive about the diagnosis. She would also like to see coverage for Kayla’s psychological assessments.

Janelle has also raised awareness and provides support for other parents who have children with Down syndrome through a pamphlet, titled Celebrating Kayla.

“This is not a horrible diagnosis. There is tremendous beauty in these kids and I would like to see that reflected,” she said.

Celebrating Kayla by Carli Berry on Scribd

To report a typo, email: edit@kelownacapnews.com.


@carliberry_
carli.berry@kelownacapnews.com

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