world down syndrome day 2025: what i've learned (so far) about raising a child with down syndrome
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at two years old, colt is just beginning to pull himself up and climb on the couch (new stress unlocked!). he’s still eating blended foods, and we’re slowly introducing more solids to his diet.
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you learn a lot very quickly when your child is diagnosed with down syndrome—at least i did.
during my son’s time in the neonatal intensive care unit (nicu), we were met every day with new information about down syndrome and the resources available to set colt up for a happy and healthy life. it was a blessing to have the resources of the hospital to help us find our footing—especially with referrals to a pediatrician, occupational therapists and physiotherapists, feeding specialist, eye care and much more.
we also had help understanding some of the administrative duties that come with having a child with down syndrome in canada—the disability tax credit and registered disability savings plan.
all of these resources and support gave us a chance to breathe and recalibrate during a hectic time. once we were ready to leave the hospital, we were off to the races.
but despite all that, there are many things we didn’t know and continue to learn about colt, and i’d like to share some of them with you. here’s what i’ve learned so far about raising a child with down syndrome:
time slows down
with colt, many things take a little longer. we were told his development would be delayed in some areas, but i couldn’t really grasp the concept until i was in it.
at two years old, he’s just beginning to pull himself up and climb on the couch (new stress unlocked!). he’s still eating blended foods, and we’re slowly introducing more solids to his diet. he’s starting to bring spoons of food and bottles of water to his own mouth but still needs assistance getting across the finish line. he is babbling and making a whole lot of new sounds as his communication develops. but it takes longer and requires patience from everyone. i see colt getting frustrated, too, but the most we can do is continue to give him as much practice as possible.
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always book your next appointment
once again, i feel blessed with the support and resources that have been available since colt was born—and continue to be available as he ages and develops. our regular slate of appointments includes endocrinology, ophthalmology, physiotherapy, occupational therapy, ent (ear, nose, throat), cardiology and probably some others i’m missing.
as colt ages, some of these appointments become less frequent. what we’ve learned is that it’s important to check in, or else you will lose your standing with the specialist. meaning that if colt doesn’t need an appointment for another year and there isn’t anything booked, we may fall out of the schedule and go back onto a waiting list for the specialty. we never leave an office without having the next appointment locked into the calendar.
public and private support go hand in hand
the public services and resources for children with down syndrome go a long way—from helping colt grow to teaching us how we can be more active and engaged parents. we currently work with occupational therapists, physiotherapists, complex care specialists for a more all-encompassing approach, and others, and these people are paramount to colt’s development.
it was only recently that we found out some of our community members (shout out durham down syndrome association) also complement all of the public programs with private programs for their children with down syndrome, primarily occupational therapy and physiotherapy.
we’re a few weeks into working with a private physiotherapist, and we feel more empowered than ever. colt has the opportunity to practice more, to learn new techniques and to be challenged by the amazing people in both the public and private programs. he’s loving it all (most of the time).
one thing we are very conscious of is too much repetition. since we pay for private out of our own pocket, we want to make sure the programs are diverse enough to cover more of colt’s needs and not the same things over and over again from session to session. we do our best to communicate with our care teams on both sides to make sure we’re constantly moving forward.
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it doesn’t get easier, you just get better at it
it’s only been two years, but i thought it would get easier. it isn’t for us, but that’s not a bad thing.
raising a child with down syndrome can be chaotic. balancing colt’s needs alongside the needs of my wife, daughter and myself, work, hobbies, events and many other responsibilities is challenging. there is always something else being added to the plate, but you learn to manage in more effective and efficient ways. you get better at it.
my wife and i share a lot. it’s the only way to stay on the same page. there’s joy, frustration, patience, worry, ecstasy and despair all wrapped into this wonderful life. but most of all, there is love, and that triumphs over anything that comes our way.
we’re not perfect, but we’re getting better at it.
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