Who knew that this year, World Down’s Syndrome Day would be such a social media success? To date, the 50 mums video has had 18 million views! If you haven’t seen it yet, please click the link above and share; it’s a powerful piece of advocacy for both mothers and their children.
I haven’t had much time to think about World Down’s Syndrome Day (21st March, three copies of the 21st chromosome, geddit?), other than joining in with the sharing, but luckily for me, I have come great friends who are always willing to share with me some of their ideas on how we can build on the awareness that has been raised, of love and hope, and how, together, we might ensure a brighter future for our children.
A while back, a young teacher called Johnny inspired me when he shared a great lesson he’d done with his class: ‘I wish my teacher knew’. Often it’s the quiet children who hide unplumbed depths of feeling, sometimes it’s the louder ones who put the barriers between you. His lesson showed that there were lots of things that his class wished he knew about them – and the same is true for the children with Down’s syndrome, who, thanks to communication challenges, especially when young, need their parents to advocate for them, to help their teachers to see the things they wished you knew.
Hayley and I have put together a short post, detailing the things we’d love you to know about our children (please follow he link to her fantastic TED Talk.) You can find detailed support and guidance on the learning profile for Down’s syndrome (remembering OF COURSE that every child is an individual and that that 21st chromosome, while obeying some generalities, is expressed in the individual very differently) here.
Natty: I have lots to say. Please listen carefully.
Natty: I behave differently at home
Hayley: in Natty’s case much better, but in some cases children melt down when at home after a day of ‘keeping it all in’.
Nancy: I’d add that Sam is the same.
Natty and Sam: My behaviour is a way of communicating.
Nancy: Sometimes it can mean that health is about to take a turn for the worse. Please, please, please let parents know if you notice any changes in behaviour. When you find it hard to communicate, the adults need to pull together to figure out what is wrong.
Nancy: Strengths are not what we measure in schools.
Hayley: Natty has exceeded all of our expectations; her strengths lie in her ability to swim, dance, bake cakes, make others smile and fart on cue.
Nancy, Hayley, Natty and Sam: It only takes small reasonable adjustments to make children with Down’s syndrome feel included in all areas of school life.
Natty and Sam: We want to be included in all areas of school life
Natty: I don’t want to be glued to a PA. My friends should be other pupils, not an adult.
Hayley: I want to hear about her friendships, not the TA/PA.
Sam: I am very happy when someone else does everything for me.
Nancy: I get very cross when someone else does everything for Sam.
Natty: I want to be independent as I can. Please help me to achieve that.
Sam: I love being the class mascot.
Nancy and Hayley: Being the class mascot or pet isn’t what is best for our children in the short and long term. Treat them like the others; be firm with me and have high – but realistic – expectations.
Natty: Don’t laugh when I am naughty.
Hayley : She’s a great actor and adept at distracting you from the task at hand. Don’t be fooled by crocodile tears, cute turns of phrase and silly dance routines mid-way through maths.
Natty: Ask me to help others, do classroom chores and have responsibilities.
Sam: Helping others makes me feel grown up. I want to be grown up.
Sam: I want to have and choose my own friends.
Nancy: He’s a friendly and trusting person. He needs adults around him who can show other young people how to be friends with him – don’t take his choices away.
Hayley and Nancy: Please listen to parents. They know their children best.