love from the start: supporting new families in the down syndrome community
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“it’s really important for people to understand that this child, although he’s different, you love them right from the start and you keep loving them."
hilary gauld
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when a parent first meets their newborn child, an overwhelming sense of joy washes over. when that child is diagnosed with down syndrome, a wave of other emotions takes over.
“what goes through your mind is, ‘oh my goodness,’ said laura lachance, executive director of the canadian down syndrome society (cdss) and mother to a child with down syndrome. “first of all, i didn’t ask for this. why me? there’s a great deal of anger and resentment and self-pity, and almost, in some ways, it’s grief. it’s a baby you’re holding, but not the baby that you thought, and your thought goes to, ‘what’s their life going to be like?’ you immediately think of the misconceptions that you might have about somebody with down syndrome.”
lachance’s experience, like many others, was also isolating at first and clouded with common misconceptions that many parents deal with. you’re unaware of what life is really like raising a child with down syndrome.
“it’s really important for people to understand that this child, although he’s different, you love them right from the start and you keep loving them,” lachance said.
the latest awareness initiative from the cdss focuses on just that: love from the start, to let new parents of children with down syndrome know that they’re not alone. there is support and the outdated misconceptions that keep them in a place of fear are not always in tune with today’s advanced reality.
eliminating ‘can’t’ from your vocabulary
parents new to raising a child with down syndrome may be bogged down with feelings of what their child can’t or won’t be able to do. according to lachance, those “can’ts” left parents feeling as though their child would be “worthless, wasn’t going to make anything of themselves,” even if they didn’t have medical concerns.
but nothing could be further from the truth—she knows because her son, kevin, definitely can.
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“kevin can, actually. it may be different, and it may take longer to get there, but he can, and he does, and he will,” she said, highlighting that all kids with down syndrome are capable of having a fulfilling life.
“this child is going to have the same likes and dislikes as their peers who don’t have down syndrome. they’re going to come to the teenage years and they’re going to come to what activities they can excel at, what they can do, sports that they can get involved with, jobs that they may hold, continuing education that they may pursue,” she said. “and those are things that have only really come about since the work of some of the early pioneers in the 1960s who didn’t want to institutionalize their babies but wanted to keep them at home and love them.”
taking advantage of community
while the initial experience of learning your child has down syndrome may feel isolating, and it’s not wrong to feel that way, it doesn’t have to be. the advancements and narrative surrounding down syndrome have changed drastically and communities across the country are all there waiting for more people who get it to drop in and say hello.
“we all share that experience,” said lachance. “everybody’s been there in that space.”
the solution to isolation? inclusion—creating welcoming spaces, working hard to get rid of misconceptions once and for all, such as the campaigns and initiatives formed by the cdss, and “making a new friend with somebody who’s sometimes ignored and choosing to be kind every day.”
“you don’t know what journey other people are facing,” said lachance. “we’re stronger together. lean into people who have some experience.”
gone are the days of chit-chat over the backyard fence, as the way people find community has shifted drastically. in decades past, people would reach out to their neighbours, welcome others who had just moved in or offer new moms helpful tips and tricks, but it’s simply not that easy anymore.
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while there are still many traditions and cultures that practice geographical community, it’s not as commonplace as it once was, so finding the right community is vital, because parenthood in its early days is very challenging for all parents, including those whose child has down syndrome.
the task of finding community may be daunting, but it’s available through the social work department at most hospitals, family physicians, online resources such as the cdss and local groups.
“the parent has to do the outreach, unfortunately, because they just might not want to do that,” said lachance. “there’s huge value in seeking the council of people who have experience and can understand and can help you to understand and, in turn, help you to help your family understand what it means.”
understand that there will be challenges, but they will be worth it
raising children is hard, and while navigating a down syndrome diagnosis in your own child may add an extra layer of challenge to the experience, that won’t make it any less worth it. children with down syndrome are often severely underestimated because of misinformation and misconceptions, but that is where knowing who to turn to comes in.
knowing that the journey is changing for the better in terms of awareness and support can also help greatly.
“even five years ago, around this time, around world down syndrome day, there was maybe only a couple of groups that did any awareness work, and now it’s just loaded with it, it’s everywhere,” said lachance. “it’s time to move on, lean in and to know that you’re not alone and that we want to help give you an honest picture of what it’s going to be like while we reassure you that you’re not alone.”
she continued, “it’s not a one-size-fits-all, but i just think it’s really important for families to know that it’s not isolating. it’s not isolating that you think you’re on your own. there’s a whole community out there just waiting to share and to talk and to help.”
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