As World Down Syndrome Day approaches, I have a confession to make. I have never really understood if we were supposed to celebrate Down syndrome or spread awareness. Officially, WDSD was founded and officially observed by the United Nations in 2012 as a global awareness day. The 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. At that time, my boy, Jake, was about to turn 5 years old, and I have to admit I was not ready to celebrate Down syndrome. He was cute, but the struggle was real. When I thought of the future, I was really concerned about what things would be like when he was no longer ‘cute’ and little. However, the idea that the whole world would come together to recognize individuals with Down syndrome has always been appealing.  

Over the years, I have come to see World Down Syndrome Day as a day to spread awareness and acceptance. So many have no idea how unique and full of personality each individual with Down syndrome is. I consider myself lucky to know so many through my work with GiGi’s Playhouse, and one of my favorite things is watching their growth and personalities emerge. Equally, many people have no idea how important the push for acceptance is. Acknowledging how capable these individuals are is essential for including them in the workplace and our everyday lives.  

I am fortunate to have my son attend a school where teachers and administrators understand that acceptance begins with inclusion. This was on display a few weeks ago when Jake had the opportunity to compete with his Cedarburg Bulldogs Unified Basketball Team. This team is a collaboration between school districts and Special Olympics. Typical students play with Special Olympians to compete against other schools. It is a great opportunity for students to play with their same-age peers. It breaks down barriers and offers a common goal for all students. The home game hosted at Jake’s school was nothing less than outstanding. The gym was full of community spectators, a full student section, a dance team, music blaring, a scoreboard with graphics for each player and so much more. It gave our neuro-diverse students the full varsity experience, and they loved it! As a parent, the experience of hearing your child’s name called out over the loudspeaker was emotional and memorable. The best part was the community acceptance for ALL the players and watching the students spill onto the court to congratulate both teams. It was sports at its best, having fun for the thrill of the opportunity to compete. This is what promoting acceptance and awareness provides, that all players on that court had value and could contribute to their school. 

So, as I head into World Down Syndrome Day 2023, I have a much clearer goal for the day. Events surrounding this day do produce results. It takes a lot of work on everyone’s part and starts at a young age. Jake is about to turn 16 now. He is no longer cute, although I think he’s pretty handsome! His behaviors are not perfect, his speech is hard to understand, and he’s not breaking any barriers academically. I know I will continue to worry about his future because I am his mom. However, none of those things hold him back from being part of a larger community, one that is accepting, kind and generous.   – Sue Pelikan, Board President, GiGi’s Playhouse Milwaukee

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