31 for 21: A Parent’s Perspective on Challeges

One of Luke’s therapists commented to me that we had more than our fair share of challenges and trials. I know she meant well, but I guess I never thought of it that way. I should explain that her comment was not all about Luke having Down syndrome. She was also commenting about my own health issues, that our older son has had months of sleep issues, and that both my son and I very likely have ADHD, all of which does seem like a lot I suppose from an outsider perspective.

Don’t get me wrong. We have our days. Today was a rough day for example. We woke up to no heat and a leak which caused a huge hole in our ceiling, but these are minor inconveniences that can be fixed.  And I sometimes forget to take my thyroid meds or take my insulin when I am sleep deprived, so when I hit that trifecta of high blood sugars, thyroid mind fog and sleep deprivation on top of the forgetfulness of ADHD, I can be a real mess!

But with all that, I don’t ever think of Luke’s Down syndrome or his therapies (most of which I enjoy participating in) as being challenges to endure.  I enjoy spending time with Luke and appreciate every moment, maybe because I know that we will not have anymore children or because we don’t have many set expectations for Luke as a lot of time has passed since Kaden was that age and I’m not sure if a”typical” child exists anyway.

So I don’t think about Luke as a challenge to deal with, not at all. I know I will probably have challenges with him in the future, advocating for inclusion in school, working with him to stay on the diploma track for high school, keeping him healthy and active as he is more the observer than take action type, all things that will be difficult at times I’m sure. But I’m relishing in the NOW, and that means therapy through play and lots of cuddle time with my little man.

Having gone through this once has its advantages. First of all, I was transitioning from the corporate world to being a stay at home mom, a transition that was very difficult for me for probably the first 2 years of Kaden’s life. Secondly, child development and milestones were a new concept to me so I didn’t understand the connection between toys and development and would fret often about meeting milestones by certain dates.  So I’ve learned to let milestones go as many children with Down Syndrome will be around 50% delayed, meaning that it will take about twice as long to meet milestones on average than their typical peers.  Thirdly, I have learned to forgive myself for mistakes and acknowledge that there is no such thing as being a perfect mom. That we do the best that we can do, and that if we have a bad day, just hope the next day will be better.

So with those lessons under my belt, are things more difficult because I have a child with “special needs”?  I will probably talk more about that in a future post but I will tell you that if I feel badly or stressed out, that cuddling our little guy usually just melts all that away.

So my advice to new parents of a child with Down syndrome are the same for a typically developing child and that is to not pay attention to milestones as each child will get there when they are ready, to forgive themselves and not set perfectionist expectations of themselves or their kids, and to enjoy the time with their kids because they grow up way too fast.  Because honestly, every child has his or her strengths and weaknesses and challenges they (and you as their parents) face. A child with Down syndrome is no different than that.

When Kaden was born, we didn’t know that he would have allergy cells in his esophagus that would cause him to projectile vomit 6-8 times a day until he was 2.5 years old causing feeding issues and developmental delays, that he would be colicky and have night terrors almost regularly from 10 months old to a few weeks ago, and that he would have ADHD and be highly gifted.  That all is part of who he is and his history, but all of that has come with its challenges.  But he is also kind, loving and affectionate, and I adore the kid to pieces.

When Luke was born, we knew he would have Down syndrome. What we didn’t know was that he wouldn’t need much sleep, was going to be an observer content to watch rather than engage, and that he would have a head tilt that causes him to crawl with one leg out.  So far in comparison (and not saying I compare them often), I would say the challenges seem less intense than it had been with Kaden. And we, of course, adore both our sons equally as much!

So my point is that one doesn’t know what kind of challenges a child comes with- typical or not.  As parents, we just live each day and do the best we can for both of our kids because we love them both dearly.


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