how i care for down syndrome: 'incredible value in connecting with other families'
6 minute read
kevin (left) and his dad allan. supplied
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in canada, about 45,000 people live with down syndrome, which occurs when there is an extra chromosome 21. the additional genetic material changes the way a baby develops in the womb, and while people with down syndrome may look similar to each other, it affects everyone differently. up until 1959, children with down syndrome were institutionalized and sent to a medical asylum, but when a french geneticist discovered the presence of the extra chromosome, public perception started to change around the world. still, in some cultures, stereotypes and myths about children born with differences, continue to persist.
laura lachance is a mother to an adult son with down syndrome and the executive director of the canadian down syndrome society. in an interview with healthing, she shared her family’s experience and their journey towards equity and inclusion. lachance also revealed how the narrative for children with down syndrome has changed over the years, and why cultural misconceptions are posing a threat to newcomer families affected by this condition. this is her story.
what support do you provide to your son?
kevin is a contributing adult who lives at home. he works three days a week, he is very able and independent. the only support he really needs at this point is assistance with transportation and financial matters — banking and disability claim paperwork. if we lived in a major city centre, he would be able to get around by using the subway or a bus, but we live in a small town where public transit isn’t as reliable and organized.
after kevin’s diagnosis, who did you turn to for help?
anytime that you add a child with a disability to your family, you don’t know what the challenges are going to be, and you think that they’re going to be all-consuming. for us, what made our experience more manageable is being able to connect face-to-face with a support group that offered compassion, care and connection to families who have a child with down syndrome. we stayed with that group from the time kevin was very young until he turned 10. we met once a month and the kids would do an activity together with a childcare worker and the parents would chat together about a particular issue or we would listen to a presentation where other parents of older children shared their experience.
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there was a real sense of camaraderie and it was a great way to understand more about what to expect and how we can better support kevin. through the years, we also had an opportunity to give back and help other new parents by sharing our experience. unfortunately, because many of the family support groups typically cater to prenatal and postnatal babies, toddlers and children starting school, eventually, kevin’s interest in participating in the group waned.
in those first few years, what was least helpful to you?
there were a lot of misconceptions and well-meaning people would say things like, “kevin is going to get bullied at school.” i didn’t want to hear any of that, and it created awkwardness with some acquaintances who might have inadvertently said the wrong thing.
did kevin ever experience any bullying at school?
we had a really good journey at school, and the school administration went above beyond, but it wasn’t without some bumps as we taught them that kids with down syndrome are able and that they can, and should, be included. some of what happened during the school years were unfortunately schoolyard issues, and i’m not sure whether it was because we live in a small town, but i think that some kids weren’t encouraged to be include kids who are different. we were lucky that the school and the process was very open to communication and our desire that kevin be included in the same activities as his peers. on our end, we just had to figure out what kind of support he needed and how we were going to make that happen.
has the narrative for children with down syndrome changed over the years?
the mission of the canadian down syndrome society is to provide information through life stages so that children can live a good life in their community as it is their right. we also raise awareness about the misconceptions about down syndrome, where a generation or so ago, children were institutionalized. that has changed dramatically. i think that in many places, as diversity and equity have become household words, it’s made people more caring, but we still hear stories of unfortunate situations.
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who is still having negative experiences?
i would say that new canadians in particular may not take a stand to advocate for their child because culturally, they may still be working through some of the older misconceptions. they’re often so surprised to learn that in canada, their child can be included in programs and at school. there are still many cultures where kids with down syndrome are the ‘backroom’ children and they don’t think about including them as part of the family experience. but the truth is that when you have a child with special needs, they may need some extra help, but they do have ability as well. they’re not to be considered to be those ‘poor, suffering disabled children.’ fortunately, most parents of children with down syndrome are able to figure out a way to have their kids communicate and participate in community life.
laura lachance (third from left), and her son kevin (far right): “when one is challenged you always think ‘why me?’ in private moments. but your family and friends help you to dust off and push forward. this is very energizing.” supplied
has having a child with down syndrome impacted you financially?
some of the therapies that are recommended and covered by the government have very long wait-lists now, but when we were dealing with it in 1992, it wasn’t quite the same. we had no challenge getting supports for kevin. if you know that your child would benefit from extra speech and language lessons and you can’t afford it, it becomes very difficult as the government will provide services up to a certain point, but not everyone qualifies for financial assistance for all the recommendations. it also varies by province.
does that mean that some families are left out?
one of the challenges is that sometimes, it appears that there is more support available for only some children, that it’s not equitable. we firmly believe that support should be available based on need and not on label. there are other disability groups that appear to have more support and it may have some people in the down syndrome community asking the question, “what about us?” the government does provide support but only up to a certain level and if you personally can’t afford to cover the expenses for more support services, it makes it very challenging. when a child becomes an adult, there are supports available, but it’s below the poverty line. if someone wants to live on their own, it’s very difficult to afford it on current assistance amounts.
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when kevin was diagnosed, did you ever ask yourself, ‘why my family?’
i think when one is challenged you always think ‘why me?’ in private moments. your family and friends help you to dust off and push forward. this is very energizing. sometimes, early on, it was hard to stay strong and focused.
did you parent kevin differently than your other three children?
we had advice when kevin was only a few days old from a wonderful pediatrician who said, “treat him and teach him about the consequence of his actions as you would your other children.” yes, kevin sometimes took longer than the others, but that’s how we moved as a family, all looking out for each other. i think maybe now as adults our other children would like to have their meals prepared.
what’s your advice to other parents who have a child with special needs?
there is incredible value in connecting with other families who have walked in your shoes. i think that it’s also very important for caregivers to look after themselves and not get themselves to a point where they’re totally burned out. we didn’t talk about caregiver burnout 30 years ago, but now, there is much more attention on that, and we have so many caregiver organizations provincially and nationally that have webinars and group chats where you can learn different techniques to look after yourself and do it in a way that works for your family unit and your cultural history.
maja begovic is a toronto-based writer.
do you have a story about your experience as a caregiver? send a note to info@healthing.ca and we’ll be in touch.
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