I've recently been lucky enough to be involved in an amazing project called 50 mums | 50 kids | 1 Extra Chromosome. If you've not seen it, check it out here:
The response to the video has been completely overwhelming, I don't think any one of us could have predicted the quite literal overnight sensation it became.
With the huge success came the inevitable media coverage which has been fantastic and hugely positive, however there's one thing that stings every time I see it written...
Now, you might be looking at that and wondering what the issue is, why that simple phrase can hurt.
Simply put, it's putting the disability ahead of our children. When reading that, the first thing you know about the child, about MY child, is that they have Down Syndrome.
It's not just in media headlines either, health professionals are guilty of it too, people you talk to in the street, comments online, even our own families. People speak without thinking and refer to them as the 'Down's kid' they know. Or you walk into the doctors and the first thing they say when they look at your child is "oh, they're Down's"
I know I'm not the only person that feels this way (There's a campaign, Lose the Label, the sole aim of which is to promote the use of person first language) and amidst all this media hype you may ask yourself why it matters?
It matters because THEY matter.
Children with disabilities are so much more than their diagnosis and in putting the disability first you're failing to acknowledge that. You're failing to acknowledge the vast array of characteristic and personality they bring to the table.
Take my daughter for instance... Her name is Francesca, she's the youngest of 3 and so perhaps a little spoiled, she loves to sing and listen to music, she's got a killer smile that can soften even the hardest of hearts, she goes to school and dance classes and she happens to have Down Syndrome. She's not a Down's child, she's just a child.
Each one of those "50 kids" are unique individuals with their own personalities, strengths and challenges. The message is right there in the video there's just "1 Tiny Connection" between them and it really is such a small part of who all these children are.
So I ask you, as parent to 3 beautiful children, one of whom just happens to have Down Syndrome, please consider that a small change in your language could have a huge impact on these children feeling valued for who they are and not the diagnosis they have.
Written by Melissa Lockwood
Read more about Down Syndrome Awareness Week and discover clever fundraising tips here.