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.
乌鸦传媒淜ayla乌鸦传媒檚 a valuable member of our classroom who just happens to have Down syndrome. It乌鸦传媒檚 important for the students who haven乌鸦传媒檛 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,乌鸦传媒� 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 , 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.
乌鸦传媒淒own syndrome is the most frequently occurring chromosomal congenital anomaly in Canada,乌鸦传媒� the study said. 乌鸦传媒淒own 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.乌鸦传媒�
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乌鸦传媒檚 mother Janelle Baldwin, that wouldn乌鸦传媒檛 be an option. She believes Kayla is a gift and, if given the choice, she would deny the non-invasive testing.
乌鸦传媒淚 think that kids are made the way they are, and I think there乌鸦传媒檚 value in differences,乌鸦传媒� she said. 乌鸦传媒淚 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.乌鸦传媒�
Janelle and her husband Sandy have learned from their experiences with Kayla.
乌鸦传媒淵ou learn a lot of patience and grace. You know, she loves everybody, she loves them. She hugs them in the mall.乌鸦传媒�
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.
乌鸦传媒淲e thought it would be like Grey乌鸦传媒檚 Anatomy,乌鸦传媒� 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乌鸦传媒檛 confirm it, saying they had to wait for a doctor.
乌鸦传媒淚t was like she was an exhibit. Everyone kept coming in and staring at her and leaving.乌鸦传媒�
After the diagnosis, she was offered counselling which she declined. 乌鸦传媒�(The diagnosis) shouldn乌鸦传媒檛 sound like a funeral,乌鸦传媒� she said. 乌鸦传媒淧eople focus on the disability instead of the ability and that, to me, is a tragedy because they add so much. I don乌鸦传媒檛 know what I would do without Kayla.乌鸦传媒�
Kayla was offered far more support in Calgary, where she was born, than in Kelowna, Janelle said.
乌鸦传媒淭hey have a special Down syndrome clinic at the Children乌鸦传媒檚 Hospital so you get intervention right away for physio, occupational therapy, speech,乌鸦传媒� she said.
To get support in B.C., aside from her teacher乌鸦传媒檚 assistant, Kayla would have to go through a psychological test, which costs between $1,500 to $2,000. That乌鸦传媒檚 because they won乌鸦传媒檛 use the information from Alberta that proves she has Down syndrome, said Janelle.
There is an 18 month wait list to get the test, 乌鸦传媒渁nd I think that乌鸦传媒檚 terrible.乌鸦传媒�
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.
乌鸦传媒淚t took us over a year to get into a pediatrician too,乌鸦传媒� 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乌鸦传媒檚 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.
乌鸦传媒淭his is not a horrible diagnosis. There is tremendous beauty in these kids and I would like to see that reflected,乌鸦传媒� she said.
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