HAPPY DOWN SYNDROME AWARENESS MONTH! Who doesn’t love October?! DS awareness is just one more reason for this month to be your favorite.
I am the sibling of an individual with Down syndrome, and the future adoptive mama of another. Friend to some, teacher to others, jiejie to others still. Down syndrome blesses me daily.
I was five years old when Matt was born. When you’re five, you don’t remember words like “Down syndrome.” They don’t matter. Even if someone had tried to explain the definition of “syndrome,” I probably would have had enough trouble counting its syllables, let alone understand what it meant. I liked it this way, because for about 4 years, Matt was just my brother. Not a syndrome. Not a diagnosis. Just the cutest gosh darn peanut you ever did see. And he was my buddy, right from the start.
My brother was my first exposure to the stages of infancy and toddlerhood, and for a good chunk of my life, I thought sitting at 12 months and walking by 24 months was the way every baby did things. Matt has always taken some extra time to learn, and with hypotonia (low muscle tone), gross motor milestones came to him at a slower rate. But they came. And he learned. Because he is capable.
It’s funny. This brother of mine, who like so many others, was predicted to have a life of let downs, was doing all the things the doctors cautioned may never happen. In 1999, doctors were still delivering a very black & white prognosis of Down syndrome. Painting the picture that it is bleak. Disappointing.
Sorry docs of 1999, you are mistaken. This journey is in full technicolor. Down syndrome is absolutely a gift from the God of heaven. Milestones ARE met. Challenges ARE conquered. And the differences, the list of statistics, the health complications, and the never-wills fade to the background when those almond eyes smile up at you.
Two blog posts ago, I wrote about the million and one titles for the series I would be beginning about my brother. Each story’s title will feature a physical, common-in-all-individuals-with-DS quality of my brother, as well as a more unique piece of his personality/interests. The hope is that these stories will make you smile, make you laugh, bring you hope, and bring awareness to the most remarkable population on this earth. Perhaps at the end of this series, I will release the hopeful words of my children’s book.
With all that background shared, here is story #1.
Matt has always struggled with introductions. For years, if someone were to introduce themselves to Matt or ask for his name, he would respond completely inappropriately – with someone else’s name, a random comment, a loud scream or laugh, or an ignore and walk away. Making sense of this was futile. It was just him.
One year, we were trick-or-treating together (I went out with Matt up until my last year of high school, because it made us both happy, saved my parents from needing to go along, and gave us double the candy). When I was a sophomore in high school and Matt was ten, I pre-taught what polite trick-or-treating looked like. We rehearsed. I repeated the lines before we walked up to the each door so it would be fresh in his memory. I asked him what he should say when the door was answered and he would respond appropriately. But when the doorbell was rung once (or five times), everything changed. “Trick-or-treat” became “smell my feet,” “smell my butt,” or “smell my candy.” “Thank you” became “give me it.” And a simple hello to the unsuspecting little old lady became “hi grandma.” Other commentary included: “what a mess,” “I don’t want that,” “I’m a cow” (which was most definitely not his costume), and “ew, what is that smell?”
In the moment, I was doing my best to remain patient with my brother while also showing the neighbors our mutual appreciation for their handing out candy. I worried that these people wouldn’t understand my brother – thinking he was just some rude kid, that he didn’t deserve to be out taking candy. I worried that if they did know he had Down syndrome, they would fail to see any of its goodness.
Now – I laugh. His silliness. His candor. He was so overwhelmed with excitement in the moment, he literally had no filter. But with each palm to forehead ring of the doorbell, Matt grew one teeny step closer to appropriate interactions with strangers.
Today, his introductions are impeccable. When our whole family is present, an introduction goes as follows, “Hi, my name is Matt (last name). This is _______ (last name). He is my father. This is _______ (last name). She is my mother. We are from (city). This is Erin (last name). She has a son. His name is (name). She lives in (city, state) with Lucas.” And you better believe, any additional family members present are also introduced in full detail: sister, grandma, yes – even the dogs.
He doesn’t miss a beat. There are way too many waitstaff, police officers, and near perfect strangers who know more about our family than they ever expected receiving from a friendly greeting.
But there isn’t a single person who doesn’t smile big when he runs through his introductory spiel. And if they knew what his greetings used to look like, I bet they’d smile even bigger.
I’m so proud to call him brother and best friend.