World Down Syndrome Day: A Day to Celebrate

Sarah R 032114Today, March 21, is World Down Syndrome Day. This will be the ninth year officially recognizing three copies of the 21st chromosome.  The theme of this year’s celebration is focused on health and well-being. Truth be told, it didn’t occur to me that people would want to celebrate Down syndrome or that there would be an official day to honor it – but it makes complete sense, seeing as how we have a day to celebrate Pi, waffles, sushi, talking like a pirate … you name it, someone probably has a celebration for it. Down syndrome really is something to celebrate; while raising children with Down syndrome is certainly a different path than I would have imagined for myself, I cannot imagine living any other way.

This year, we are celebrating World Down Syndrome Day at a dance hosted by community groups that are an extension of the Down Syndrome Guild. In recognition of its ninth year, here are nine lessons I’ve learned from parenting children with Down syndrome:

1. Even though it’s trite, know that patience truly is a virtue. Being patient allows me to hear (or figure out) what the root of a conflict might be. Patience also allows me to see independence: it is all too easy to tie shoes, zip jackets, or brush teeth for my kids but when I am patient, I see that my kids can do it themselves … even if it takes just a little more time.

2. Slow down. This is in direct correlation to being patient. Schedules, obligations, and activities are filling our days but sometimes, it’s not to our benefit. I can enjoy our days more when they are not crammed full of “stuff.” When we ask our children a question, we need to give them an opportunity to answer – and sometimes that means allowing more time for them to do so.

3. Remember that kids are kids. Kids with Down syndrome are still kids – they have the same preferences of people, things to play with, etc. and should be allowed the same opportunities to play as other kids.

4. Keep expectations high. My husband and I believe that our kids are capable of learning and doing anything – the caveat to this is that it will likely take them more time to do so (reinforcing lessons 1 and 2).

5. Stay active in the community. When I think about the opportunities my children have compared to those even thirty years ago, I am in disbelief. My kids have access to dance, cheer, therapeutic horseback riding, and individualized education. Being active in these activities teaches them life-long skills about team work and responsibility which will help them develop into engaged citizens.

6. Continue your education. If you’ve ever wished that parenting came with a manual, then you might consider having a child with a disability. I say this a bit tongue in cheek, but seriously, there are so many resources available on parenting a child with special needs. While not all resources are created equal, quality resources do exist and it is worth your while to familiarize yourself with them.

7. Teams are everywhere – so join one! We have education teams, medical teams, family teams, sports teams – and knowing how to be a team player is critical to surviving and thriving.

8. Trust your intuition. I can rationalize and put off making a decision like it were an Olympic sport, but I’ve learned that trusting my intuition is highly valuable. When something is just … off, it’s hard to identify it – but by trusting myself, slowing down, and being patient, I can usually figure out how to discover and resolve the thing that’s off.

9. Live life intentionally. While this is not specific to raising children with Down syndrome, living life intentionally makes it that much easier for me to feel like I have a purpose to fulfill. We have this opportunity to raise a more humane, caring, and accepting culture, and I am privileged to be a part of that movement.

Today, March 21, we are the lucky ones – and we will celebrate that, today and every day.

Sarah Rotert
I grew up in Liberty, just a few blocks off from the square. After a brief stint at Iowa State University, hubby and I returned to the Northland in KC to welcome our twin girls into the world. Soon after we were parents to 2, we were parents to 3. And after a bit of a hiatus, we returned to infant hood with the birth of our 4th child. As our twin daughters have special needs, I changed my course of study and earned an A.S. in Sign Language Interpreting. We used American Sign Language as our primary communication for the first 2 years of their lives. Over the last 9 years since becoming a mom, I've learned (and am still learning) about childhood advocacy, living on budget, baby wearing, cloth diapering, figuring out how to plan/shop/execute yummy/kid-friendly/healthy meals. While we've been life long KC residents, we are continuously in awe of what this city has to offer.