Today, the 21/03 is World Down Syndrome Awareness Day. Before having Noah, I didn’t put a lot of thought into awareness days. Of course its only when a topic becomes important to you personally that you really stand up and take note. This year however, a conversation seems to be happening. A carpool karaoke video of mums and their young children with Down Syndrome has gone viral with social media, TV shows and celebrities all taking note. A young woman appeared on American Idol with her best friend Malcolm, a young man with Down Syndrome who has taught her how to love and appreciate herself again after she went through some difficult times and people all over the world are preparing to pull out their odd socks to celebrate diversity today.
We welcome the conversation. We are using days like today to promote love. To show that we are normal happy families who love and appreciate our awesome kids. After Noah was born, a time where I felt very alone, these stories would have been a great comfort to me.
But how do we use these conversations to implement real and lasting change? Just because we click on a warm and beautiful story and find ourselves smiling or even teary-eyed it does not mean we accept or respect diversity.
I would prefer to talk about the amazing group of young adults with Down Syndrome who appeared on Friday nights Late Late Show to promote their fantastic photographic exhibition. Young adults who represented themselves with grace and professionalism on national television. The young man who works 5 days a week and in his spare time has taken on the additional role of keeping his local GAA team hydrated. Or the talented young dancer performing and inspiring audiences on stage with the amazing Candoco Dance Company, the teenagers graduating from school with Leaving Certs and going on to college, the kids and young adults competing and winning gold medals at Special Olympics.
I would like to take some time to consider the journey they have had. The road to independence and success is filled with hard work, overcoming obstacles, challenging stereotypes and fighting so hard for support and services that they deserve to reach their destination. They have tackled that path with strength of spirit, determination and motivation to succeed. With the love and support of strong families and friends, they have made it to where they are now. It is so frustrating as a parent that our children have to fight so hard for that little extra support they need but it is so inspiring that despite those shortcomings in support, people with Down Syndrome are achieving more then ever before. Imagine what our children could achieve if they didn’t have to fight so hard? If they received the respect and encouragement that they so deserve?
I started to write about our journey because I want to tackle perceptions. Noah is a beautiful, charming little boy and he is so loved not only by us but also by everybody around us. But this is not the part of our journey that surprises me. When I discovered Noah has Down Syndrome, I did not expect that he would be so strong, so committed, so positive and so determined. He has worked hard since he was only a few months old. He knows his strengths and he knows his weaknesses. He knows when he is not as good at something as other kids are and he gets frustrated. He turns this frustration into determination until he achieves his goal in his own time. He tackles every challenge with a strength of spirit that I have rarely seen and he loves to succeed! He has taught us all to celebrate even the smallest step in the right direction.
Today on a day where we have an opportunity to talk about Down Syndrome and Awareness, we should celebrate ability and achievement. If we really want to drive change, we should respect and admire people with Down Syndrome who have fought this battle to independence. We should salute the parents who have been by their children’s side every step of the way because they believe in their children and their ability and because they did not want to miss the adventure! We should tackle our governments to invest in resources and support to ensure that all our kids can reach their full potential.
I welcome the wonderful pictures and videos of all the loving and amazing families out there on a similar journey to ours. It is incredible to see such a strong community of families and such an outpouring of support. I welcome the millions of shares of heart warming stories and I really welcome the conversation. I also welcome the encouragement, respect and recognition that our kids deserve and I hope that by writing about this incredible journey we can contribute to real change in perception.
Today we celebrate our children. We recognise that they are strong, they are capable, they are smart. They need some extra help, love and support to fulfil their full potential and we continue to fight to make their path a little easier. Our services let us down, our professionals let us down but our kids never let us down. On the contrary our children bring joy and perspective into a world where at times we are increasingly at risk of losing both. I feel very lucky to be part of this inspiring journey.