Tomorrow, the 21st March, is World Down Syndrome Awareness Day.
21/03 representing the 3rd and extra copy of the 21st chromosome present in all people with Down Syndrome. Most people don’t know that Down Syndrome is named after Dr. John Langdon Down who discovered the pattern between this extra chromosome and it’s characteristics back in 1862! We have come a long way in the 160 years since then but we still have lots to talk about in our continuing quest for long lasting change and inclusion!
Noah is looking forward to tomorrow, a day where we throw on crazy mismatched socks and celebrate uniqueness, diversity and most importantly we create awareness about Down Syndrome. After already celebrating Mum’s birthday and Mother’s Day this month, he figures its about time there was a day all about him! Of course Anna would argue that every day is about him but that’s a topic for another day!!!
Noah is 11 now and in 4th class. Tomorrow, he will stand up in front of the whole school to present 7 slides that he created with a little help on his Chromebook. His presentation is all about Down Syndrome and why we are asking you to wear odd socks for an awareness day. He will talk about what it is, why it’s pretty cool to have Down Syndrome and why it is important to celebrate difference and be kind to each other.
For an 11 year old with a significant speech delay, this is a pretty awesome undertaking!! I could not be prouder of the young man he has become and how he knocks down boundaries and overshoots expectations every day. I’m so proud of how he educates the people around him just by being himself and being confident in his own skin. He can be shy and self aware like the rest of us but he doesn’t have the same inhibitions that many of us have about our shortcomings. He has learned to adapt to situations, he will help you to understand him if you struggle and he has an exceptional skill of turning potentially uncomfortable situations of miscommunication into well timed comedy!
As we prepared his presentation for tomorrow, I asked him what is good about having Down Syndrome. His first answer was that he gets less homework which made me laugh out loud but he also added that he likes “being different and interesting”. Myself and his Dad have put years in to trying to be different and interesting and here we are, it comes naturally to Noah!!!
Tomorrow is about driving awareness in our community about Down Syndrome and inclusion. In many ways we are making huge progress in terms of diversity and inclusion. We see Down Syndrome represented in movies, on TV and in advertising campaigns. We see young actors like our own James Martin winning Oscars! You might see somebody with Down Syndrome working in your local shops or cafes. Your children might have a schoolmate with Down Syndrome or maybe somebody in the swimming, tennis, dance or football club. There are people with Down Syndrome graduating school, achieving college degrees and achieving more than ever before.
It can be hard sometimes to reconcile this world of change with the every day experience and challenges we are still presented with. In many ways parents are still fighting for the same services we were fighting for 50 years ago and it can feel like nothing has changed. We know that with a little injection of help and support particularly around areas like speech therapy and occupational therapy that people with Down Syndrome can be valuable contributors to society like everybody else. However, waiting lists for services are worse than ever before, children, including Noah, are waiting more than 5 years for these therapies. For young adults, employment is still a huge hurdle, 95% of adults with Down Syndrome in Ireland are unemployed, not because they can’t or are unwilling to work but because it is very difficult to find employers who will give them the opportunity they deserve. The vast majority of adults with Down Syndrome live at home as there are few independent living alternatives available for them. For some, this can make relationships, independence and self esteem a challenge.
We know there are challenges to overcome and battles to be fought but for our own family, having a child with Down Syndrome has opened a world of new perspective, lifelong friendships, unconditional love and an appreciation of the smaller and more important things in life. Our journey takes its twists and turns like everybody else but we see ability not disability, we see achievements not shortfalls and we see a future that is bright and full of opportunity for both of our amazing, creative and colourful children! We laugh a lot, we dance, we travel the world, we binge on movies and we love fiercely!
For World Down Syndrome Day tomorrow, we would love to see you throw on your mad colourful socks to support Down Syndrome Awareness. We wear the mis-matched socks to celebrate diversity but they also represent the extra chromosome – chromosomes look like little socks under the microscope! We will use tomorrow to celebrate the amazing people in our lives with Down syndrome, we will celebrate how far we have come and we will recognise how much more we can achieve on our journey.
If you see interviews, stories, news clips or Facebook updates, have a read over your coffee, share with friends and help us to make some noise for all kids like Noah who are very proud to represent themselves and who dare to be “different and interesting” !!
A brilliant piece Cara,and so relatable in many ways. We too adore our now young adult son,who is quite highly functioning, and becoming so independent. Yes we certainly see the positive, but not to forget the negative too
My other grown children, who love their brother dearly both said the same thing. If only he was just ordinary, abit like themselves, because at the end of the day who wants to be COOL, and have a disability. All they want is their brother to be NORMAL..Their thoughts. I guess deep down we all try to convince ourselves that DS is COOL, but is it really????Don’t want to appear too negative, but their honest thoughts,…..I do understand what you are saying, but reality is hard. Talk soon, and keep writing ✍