The Down Syndrome Cliché That’s Actually True


I’ve heard it spoken many times from parents of a child with Down syndrome, “I wish I knew then what I know now.” These are parents who’ve gotten past the first couple of years and many of the initial unknowns since they first received the diagnosis.

Usually by year two all the health issues, if there are any, are being worked out. And therapies, if they need any, are in place. They may also have tapped into a good support network either online, in hometown communities or both. Overall, the emotional highs and lows in accepting the diagnosis and wild wonder of what life will look like having a child with special needs, seem to level off.

Hopefully parents, by this time, have fallen so in love with their child that they can hardly fathom not being a member of the Trisomy 21 Club. Those of us so fortunate to have a T21 child know there’s a larger, worldwide community connecting us. We’re never alone.

Yet, the greatest thing I’ve learned in the two years we’ve had our son with Down syndrome is he’s special just because he’s Gavin. I know that sounds cliché, but it really has become an epiphany just in the past couple of months since his 2nd birthday. I can’t imagine my life feeling any more normal than it is right now.

That being said, I’m sensitive to other families whose children have difficult health issues to overcome because there are no two kids with Down syndrome exactly alike. That in itself is such a cool thing. Down syndrome doesn’t discriminate; it affects all ages, races, religions, socio-economic statuses, and it binds us together as one large interconnected group of individuals. Some families, however, have much more to fight through for the health of their child than others. Still, I’ve noticed that by year two, the “new normal” is understood and fully accepted as an integral part of the whole with their child. These health challenges or developmental milestone delays come as part of each child’s individual makeup, instead of solely the oft bleak diagnosis of Down syndrome.

Every day in year two, Gavin shows me what he knows, understands, feels, likes and dislikes about his world. Two of my favorite things about his mind and heart are his sensitivities to both people and order. He is a thoughtful person — incredibly thoughtful.

When it comes to people, he appears to know what’s going on pretty much all the time. As the youngest of six children and with siblings ranging from ages 20 to 8, he has a lot of interesting people and relationships to observe every day.

Just this week when I dropped his brothers off at school, our second grader stepped out of the van and gave me a sad little wave goodbye. I told him to have a good day and I loved him. When the automatic door beeped, closed and the van wheels set in motion, a little voice loudly piped up from the back seat to the brother on the curb, “IWUWYOU!”

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As the two youngest kids, even though they’re six years apart, these two have a super special bond and are incredibly tenderhearted toward each other. I have no doubt Gavin knew his brother didn’t want to go to school that day and tried to encourage him. Yes, Gavin is good at mimicking our behavior, but he also knows when to pour on the sweets to lift spirits. I’ve heard him say, “Iwuwyou” before, but this time he really meant for his brother to hear him.

Gavin watches us closely and does what we do. That’s normal 2-year-old behavior, right? The difference is, he seems to enjoy participating in daily activities more than all the other 2-year-olds I’ve raised. Gavin is so observant; we had to put a lock on the oven door because he would regularly go to the kitchen drawer, don my oven mitt and open the oven to pretend he’s cooking. It’s hard to be upset with a wee one so industrious. When I have a mixing bowl and spoon, Gavin requests a mixing bowl and spoon, and together we work side by side.

 Gavin is still at the board book stage, and we keep them in a little display unit he can easily access. He usually takes them out, one by one, to read them so it’s a regular practice to put them all back into the unit when we pick up the room.

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The other day it was getting near nap time and I decided to play with him a bit before I plopped him in his bed. He was reading in his usual spot when I sat down beside him. It was then I realized that I never sit in that spot unless I’m cleaning up because immediately Gavin began singing the “Pick Up Clean Up” song using vocal gestures of “Ba Ba” to that unmistakable tune. Then he began handing me books to put away while putting them away himself. I don’t remember any of my other 2-year-olds being such willing participants, much less cheerfully initiating clean-up! What a guy! He blesses my socks off.

Yes, I too wish I knew then, on D-(diagnosis)-Day, what I know now. My son is not a diagnosis; he is Gavin Edward Dunning: a  prominent and esteemed member of our family, even at the tender age of 2. He does not inconvenience us, burden us or require more than any other child raised in our household, as his diagnosis would suggest. He is a smart, responsible, intuitive and productive little man and special simply because he is the super kid that he is.

I’m grateful our life is back to normal from where it was two years ago when Gavin joined us, or as I’ve found myself thinking lately, it may be a bit better than normal. Back then I grieved the diagnosis; now I grieve thinking I wanted any child other than Gavin: extra chromosomes, extra compassion, extra orderliness and every precious part of him that makes him the perfect addition to our family.

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This post originally appeared on Above All Else, Love.

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