One in every 691 babies in the United States is born with Down syndrome. It’s easy to gloss over that number or not think about what that means for a child or family until you actually know and love someone who has been diagnosed with Down syndrome.
It was like that for me, I could easily not pay attention. But as I’ve watched my friends become parents and navigate the diagnosis of Down syndrome with their son I have been continually amazed at their strength, appreciated their vulnerability and honesty, and it’s made me want to learn more about how to be sensitive to things they are going through even though I may not fully understand.
I met my friends Steve and Megan at least 15 years ago now. They are two of the most genuine, kindhearted people you’ll ever meet. After being married for three years they shared the good news that they were going to have a baby. On March 20, 2009 they welcomed their first child, Oliver, into the world. After about 24 hours doctors thought Oliver seemed a little lethargic and put him on antibiotics while they sent in tests to see if he might have picked up an infection during birth. After seven days of waiting for test results to come back the doctor told them that Oliver tested negative for an infection, but he tested positive for Trisomy 21, Down syndrome. Two hours later they were taking their son home…but with him, they were also taking home fears, worries, and many unknowns.
Olie started receiving supports (physical therapy, feeding therapy, speech therapy) at just two weeks old. At 2-years-old he started attending school four days a week. He is now 6-years-old in a general education classroom in Kindergarten.
Besides being a big boy in school these days, Oliver is also a big brother to Miles (4) and Theo (17 months). Like any ordinary kid, Olie likes strawberry ice cream, Goldfish crackers, cheering on any sporting event, T-ball, reading books, swings, dancing and singing, playing the drums, snuggle time every Friday night with the family, looking through photo books from family trips and singing and dancing to Party Rock.
I asked Megan recently what she would want other families, especially moms, to know about having a child with Down syndrome? She shared,
I am still a typical mom who wants to share stories, brag about my child’s accomplishments, and be asked about what my child is up to. Down syndrome does not define us a family or me as a mom. I’m a mom of three boys, (that is crazier and way scarier then having a child with Down syndrome) who wants her boys to live to their fullest potential possible. Yes, there is a continual grieving process as a mom of a child with an intellectual disability that I walk through at different times in life’s seasons. I cherish friendships with other moms where I have the freedom to express thoughts, feelings, fears, and joys.
She went on to share,
On a daily basis I really don’t look at Oliver and see or think ‘Down syndrome.’ I look at Oliver and see ‘Oliver’. But some of the hardest times are when I watch Oliver with other children. I watch him try to communicate but it’s either not clear enough to be understood or did not come out fast enough before they moved on to something else. I watch him try to keep up, only to be left behind. I watch him try to engage in his favorite sports on rec. teams, only to have him hide behind my leg because the whistle that keeps being used is way too loud for him to handle. It is hard to watch him have to work 100 times harder to do the same thing that comes with ease for his friends.
On a personal note, if I was to be honest as a mom, it can be lonely. Most of the times I can share with moms common ‘mom stuff.’ However there are times where it is hard to be not fully understood or have a plethora of other moms to seek advice from.
However, there are plenty of times when Olie defies people’s preconceived notions and stereotypes. Whether he knows it or not, he is changing people’s views and opinions of Down syndrome for the better. Some of the biggest blessings that Olie has taught us over six years are that there is always time to notice someone and say a kind word them. He has taught us to enjoy the process even more then the end result. He shows us what a pure heart looks and acts like–quick to forgive, kind to all, no biases or judgments. Olie has also taught us to not put limits on anyone.
Since Olie was born, my friends have embraced the fact that they are not only parents of a son with the diagnosis of Down syndrome, but they are spokespeople and advocates for all individuals with the same diagnosis. Each day they have opportunities to further educate others, whether it’s in line at the grocery store, waiting for coffee at Starbucks or even teaching the other kids in Olie’s class. Confronting common myths like people with Down syndrome are always happy is important. That’s not true, they have a wide range of emotions just like you and me. Use “people first” language: Remember that the person ALWAYS comes before the disability. Also, ‘Downs’ is not a name for Down syndrome. Today, there are no limits. People with intellectual disabilities are going to college, living on their own, getting married, and achieving life goals.
One last question I asked Megan was if there was something that gave them extra strength as parents, something that carries them through. She shared,
“Upon hearing the diagnosis of Down syndrome I can’t lie, it was hard, it was emotional, it was exhausting to wrestle with worries, fears, and lack of joy. The thread that was so tangibly felt then and even today are God’s promises. Promises that we leaned on when everything else seemed to not make sense. Promises like: God does not make mistakes; God knit Olie together in my womb; God has a great plan for his life; God will not show me all the details in the future, but he will provide everything I need for the day. God loves Olie with a never ceasing, never ending love. These promises to this day are what I cling to when things are hard. They don’t make everything perfect, that’s not what God intended them to do, but they do give me peace in the midst of it all.”
Having a month specifically focused on Down syndrome gives people around the world the opportunity to come together and further educate our neighborhoods, communities, schools, and work places. Megan shared that they personally refer to it as ‘National Down Syndrome Acceptance Month’ because she feels that we are beyond just making people ‘aware’ and we need to move towards ‘acceptance’. I couldn’t agree more.
Every year at the end of September Northwest Down Syndrome Connections hosts a ‘Step UP for Down Syndrome Walk’. It kicks off October National Down Syndrome Awareness Month. The walk gathers families and friends to celebrate individuals with the diagnosis of Down syndrome. Megan shared in their part of Washington they have had over 500 participants join them each year, raising over $30,000. These funds go towards community advocacy events, bringing in training for parents and caregivers, providing scholarships for parents to attend conferences, and socials for our families. There are walks in every major city, including Portland.