My son has Down Syndrome.
You know it the instant you see his face. His gray almond-shaped eyes beam when he sees Elmo and Mickey Mouse. His low-set ears house the most adorable tiny hearing aids you’ll ever see. And his low muscle tone, or hypotonia, gives him a bouncy strut that makes you want to sing Staying Alive by the BeeGees when he walks by.
What you don’t see when you look at his adorably perfect face is how hard he works every day.
He started physical therapy at just a few months old. He has now added occupational and speech therapy. He works HARD every day to do things that come naturally to typical three-year-olds. He has had multiple hospital stays and even more ER visits. He’s overcome Epilepsy and Infantile Spasms which left him with permanent brain damage, Reactive Airway Disease, minor heart defects, hypoglycemia, and autoimmune neutropenia, among other diagnoses.
If my son has so many challenges why would we choose to celebrate Down Syndrome?
With Down Syndrome come a few extra challenges. But that tiny extra chromosome brings so much more. And that “so much more” is worth celebrating!
World Down Syndrome Day is March 21, or 3-21. People all over the world celebrate on this day because Down Syndrome, or Trisomy 21, is a medical condition in which there are THREE copies of the 21st chromosome. Get it? 3-21! We’re a pretty clever community.
On this day, not only do we celebrate individuals who have Down Syndrome, but we celebrate all they have overcome and continue to do each and every day. We celebrate the tribe of people around us who are all experiencing this amazing EXTRA life. The bond between parents of children with DS is truly an amazing thing. It is far more than friendship. Sometimes even more than family.
So, even if you don’t personally know someone with DS, here is what YOU can do to celebrate World Down Syndrome Day.
1. On 3-21 vow to stop using the “R” word. Why? Simply put, there are other words you can use! And you may just find that it’s far more satisfying using a word like “ludicrous.”
2. Do something nice for someone! Acceptance starts at a very basic level. Show someone kindness and hopefully, they will pay it forward. We can all be nice to each other without regard to race, gender, religion or ability.
3. When your child sees someone with special needs and asks, “What’s wrong with that kid?” don’t tell them to be quiet while pulling them away. Use it as a teaching opportunity to talk about differences. Teach how amazing it is that your child is completely unique and so is the person with special needs!
4. Ask moms questions! The majority of mamas of kids with Down Syndrome are not only willing but excited to talk about our children. Let’s face it. Every mom loves bragging about her kiddo. And as mamas of kiddos with a little something extra, we have so much more to talk about. We love taking every opportunity to educate and advocate for our children.
5. Teach your kids that kindness should be an everyday occurrence. Just like every other mom, mamas of kids with DS want our children to have true, meaningful friendships. Don’t we all want a group of people surrounding us who will build us up when we are feeling down and fight along with us when the going gets tough?