World Down Syndrome Day is March 21st - and the 21st day of the third month holds special significance in marking this day of awareness. Typically, the nucleus of every human cell contains 23 pairs of chromosomes. For people with Down syndrome, the individual has the presence of all or part of a third copy of chromosome 21, hence the choice date of 3/21. On the awareness day this year St. Pat’s High School is having a jean day, and people are also encouraged to wear funky and/or mismatched socks to celebrate the uniqueness of those with the extra chromosome. Local students will pay $2 to keep the uniform at home and create awareness for Down syndrome, and Helen Van Sligtenhorst, a local business owner whose daughter Sydney was born with Down syndrome, states the socks are also something fun that kids can do to take part in the day. She adds that “all proceeds from St. Pat’s go to the Down Syndrome Association of Lambton County, so it stays 100% local.”
When she and her husband had their daughter Sydney, they had no idea prior to her birth that she would be born with an extra chromosome. She said most people aren’t aware of what resources are available to them, and has found agencies like St. Clair Child and Youth and Pathways Health Centre for Children have been wonderful in terms of professional support. When discussing her child’s progress, she states: “People want milestones. They want at 6 months their child to have achieved this or that. We had to get rid of those milestones, and just let Sydney develop in her way.”
Van Sligtenhorst wants the community to know and realize that when a person has Down syndrome, they bring their own gifts and abilities. Noting her own child, she says that Sydney will be the first person to ask you how your day is going. She is very attuned to sadness, and has a great capacity for empathy. “It also doesn’t take a lot for Sydney to have joy. Simple things like going to Tim Hortons and hanging out with her friends bring her joy, and she’s not that into material things. She doesn’t need to go shopping all the time for new clothes. Simple things really give her joy, and she celebrates things with her whole being.”
When asked what people can do in terms of increasing understanding and/or awareness, she says that there’s nothing in particular that people can do, however she notes that there has been a real change in attitude regarding people with Down syndrome. “I think we’ve done a good job over the years. Very rarely have I felt I’ve been in a situation where people aren’t being nice to her, and I think people are just overall more kind and accepting. There’s more people willing to advocate, and it’s not just adults, it’s peers. So with inclusion, people are becoming more intolerant of people who mock or are unaccepting of individuals with developmental disabilities or Down syndrome or whatever the case may be. People seem to be more understanding, patient and accepting and I think it’s because we see them on TV, in their schools and churches, working in the community. It’s not considered a big deal anymore and that’s what we want.”
Patience and kindness can go a long way. While Van Sligtenhorst notes that Sydney doesn’t do the same thing at the same level as some others, it doesn’t mean that she can’t. What it means is she does things differently, and different isn’t bad.
She also notes that if there are any parents in the community who are raising a child with Down syndrome, there is a volunteer based parent group here called the Down Syndrome Association of Lambton County, to support every step of their child’s life from birth until death. “As a parent, you’re not going through this alone. We are like a parachute and we can help you.” Jan Fairbairn-Burr at St. Clair Child and Youth Services is the contact person for the group.
“The big thing people just need to be aware of… is there is lots of potential. And we have to recognize the potential. So let’s do that. That’s what I want people to know. I want them to remove the ‘t and see what they can do, not what they can’t. Let’s see the potential.”