Tomorrow, the 21st of March is World Down Syndrome Awareness Day. The date (21/03) has specific relevance as it represents the 3rd copy of the 21st chromosome present in all people with Down Syndrome. Every year we do something to mark this day and this year, we had intended, would be no exception. We had plans to rock our funky odd socks at school to represent diversity. We made posters and had balloons ready to go. A programme of awareness for all of Noah’s schoolmates to remind them to love and respect each other regardless of our differences.
We never could have imagined that in the space of only a short few weeks, our world would be changed so dramatically. The idea that I would be trying to home school and build creative time tables for Noah and his sister as the world goes into lockdown while fighting a global pandemic would have been absurd! Yet as we have learned (and let’s face it, not for the first time), we can not predict our tomorrow, pre-determine our perfect world or choose our path in the way that we want it to be and so here we find ourselves.
In many ways my family are lucky. We have already learned how to approach life one day at a time and chip away at challenges no matter how big they may seem. We have already learned that our strength is in how we manage what life presents to us, that perspective is a powerful force and that we can tackle anything with positivity and strength of spirit.
However, despite my usually optimistic approach to life, I can only say that this pandemic really sucks. As parents share online examples of their amazing home school plans and timetables, perfect arts and crafts projects, home debates, cooking masterpieces and the constant influx of online website ideas to keep our little darlings occupied and educated at this very strange time, I for one feel over-whelmed and so disappointed.
We have never taken school for granted. Since Noah was very tiny, we have worked so hard to achieve every milestone. He has been in speech and language training since he was less than a year old. He puts hours in that nobody else will ever see and he beams with his sense of achievement when it pays off. We work hard at homework and trying to keep up with the curriculum. He has come so far at school this year, he has challenged multiple pre-conceptions, built his confidence, improved his reading skills, improved his penmanship and has even started, despite the odds, to get his head around some basic maths. He has made friends, found his personality and warmed hearts. He loves school, he loves his friends, he is proud of himself, loves his routine and he has learned that despite his challenges, there is an exciting place for him in this big bad world of school.
After the huge mountain we have climbed over the last 8 years we were starting to relax and enjoy the view and we could sure do without an indefinite school lockdown.
The funny thing is that as we, and many of our loved ones around us struggle to adapt to this current new norm, it is Noah who’s unique perspective on life keeps our spirits up! This kid’s view of the world is quite simply a breath of fresh air. He loves our home so is not too bothered to be stuck there. He loves pretending Mum is teacher, he is proud when he gets his reading right, he loves playing with his sister, helping in the kitchen, dancing in the garden, watching movies, playing with his iPad, eating snacks. He loves walking the dog, singing songs, playing board games. He misses school and misses his friends but he doesn’t waste too much time dwelling on what could be happening, he is radar focused on what he is doing right now.
Noah has taught us that there is learning everywhere. Simple un-interrupted conversations, matching and folding socks, tidying up, boiling water, singing songs, counting fridge magnets, finding shapes, planting flowers, setting the table, playing games, taking walks are all opportunities to develop language, maths, motor and life skills. Spending time together, finding stars and smelling the flowers are an adventure of exploration that many of us don’t recognise. I often envy Noah’s ability to recognise joy in the very small moments in life and maybe this is an opportunity for all of us to slow down and learn from kids like Noah.
The 21st March is World Down Syndrome Awareness Day. It is in the midst of a health crisis like none I have seen in my lifetime. As with all groups in society, many people with Down Syndrome are at a real risk of getting very sick. Many have underlying health issues, respiratory issues and weakened immune systems. Many, like Noah, do not have health issues but the gap in learning opportunity through school closures, social interaction and interruption in routine is a significant blow to all the months and years of hard work they have put in to get to where they are now. Kids like Noah will have to work so hard again to catch up when some kind of normality comes back to us but likewise, it is people like Noah who will approach this challenge with strength of spirit, positivity, perspective and a big bundle of optimism.
So on March 21st, World Down Syndrome Awareness Day, let’s rock our odd socks and take a moment to recognise and respect diversity and remember that no matter what colour your skin, your gender, your sexuality or your intellectual make up, we are all in this world together, sometimes the challenge is bigger then all of us and we can learn from the perspective of those a little different from ourselves.