If you are the new parent of a child with Down's syndrome and are worried about how he or she will be accepted in this life, I want to tell you a little story...
My son Rukai is now 7 and in year 2 of a mainstream primary school. He's non-verbal and has his challenges but is mighty capable with Makaton. So is his TA. The school is generous with inclusivity and encourages all the children to learn at least a few signs. They sign every year in the Nativity. They celebrate World Down Syndrome Day. We are lucky we found them and ever so grateful for the advocates and activists who've paved the way for society to get this far. Every little helps and you have all been warriors of a different class to fight your way through the mire.
Each Wednesday morning is reading morning at the school. Fortunately I work from home so rarely miss it. Rukai lost interest in books once his mobility improved enough to allow him to dance and has only recently has decided that he loves Dr. Seuss' Green Eggs and Ham, so that's become a nightly treat to my great delight. It's more theatrics than reading but we are working very hard on pronunciation and have a whale of a time together. Progress is slow but progress is progress.
A few weeks ago Rukai's TA was telling me how the children have been enjoying sitting with him to read a story called The Old Tree Stump. It's a Biff, Chip and Kipper book (common here in the UK, if you're unfamiliar), and full of many sign-able words, so a real winner of a story.
Sure enough about a month ago one of the little girls who reads with him during the school day brought out the book and told me again how much he likes it. Next thing I knew there were about 4 others who took a seat and joined us. Laughing away, signing with glee, loving the story and time with my son.
That child for whom I was so afraid, just like you may be feeling right now.
Today the crowd around Rukai - totally engaged and gleefully signing its way through that book - had to have grown to at least 10. It was standing room only around the desk. There were even a few boys this morning. It was something I thought I'd never see those seven years ago. Sure, life has since hinted that this is the true way forward, but a cold hospital room on a blustery February morning, staring down an unknown journey are most certainly the bogeyman. And we know the bogeyman is not real.
But what is?
Hope is real. Progress is real. Friendship is real. Curiosity is real. Children are malleable and the future is real. Don't be afraid of the world, help the world lose its fear. Go be amazing. Your child will be amazing, this is all I know for sure. There is no crystal ball, there is just you and them and one single day at a time.
As I looked up at all those kids this morning I laughed and smiled 'this is a reading party today!' and the response I got back from one of the children rang so loudly and beautifully in my ears:
'Rukai has a lot of friends!'
Yes. Yes he does.
Life.
