Today marks World Down Syndrome Day (WDSD), a day which has been officially observed by the UN since 2012 (worlddownsyndromeday.org). The reason March 21^st is chosen as a significant date is because people with Down Syndrome have a triplication of their 21^st chromosome (21/3). Fun fact!

The World Down Syndrome Day Organisation website has a theme each year. The theme for 2023 is ‘With us not for us.’ What does that mean?

I hope I do the Organisation justice when I summarise it as meaning a shift in action and consciousness from people with disabilities being treated as charity cases relying on others for support to independent individuals who have the freedom and opportunities to make their own, personal life choices.

That still comes with an attitude of gratitude. We have had many people help us on our journey with Lincoln. This list includes a variety of professionals in medical and educational settings; teachers, individual needs assessors, special needs co-ordinators, physiotherapists, cardiologists, sensory needs consultants, speech and language therapists, audiologists, respiratory experts, charities like Amaze and the most excellent T21 Group in Brighton. And of course, plenty of love from friends and family. We are grateful for it all, we DO need help.

‘With us not for us’ is about treating people with Down Syndrome in all circumstances like, well, people. Everybody wants to be treated as an individual, whatever their level of ability or individual needs. We all have unique views on life and gifts to share.

We are so fortunate to live in Brighton where inclusion and diversity is largely seen as an important and positive aspect of society. I am so grateful for the community at Lincoln’s school who have always embraced Lincoln and made ways to include him in a variety of activities that are so important to his development.

There are also great social enterprises set up in Brighton like Café Dominica who train people with all kinds of disabilities, helping to gain valuable skills to enable them to seek employment in the future in other organisations. It gives me hope for the future.

But more can be done to give people with Down Syndrome their own voice and improve the frameworks that govern their everyday living and choices. More resource, more shared knowledge, awareness and understanding of issues. Some recent legislative changes and proposed plans feel like nods to making improvements but on the other hand, refusal to change laws despite hard and heartfelt campaigning makes you wonder if lawmakers really are listening well. Hopefully, some change means moving in the right direction and the provisions filtering down will prove to be meaningful and practical for the families that are impacted.

On a lighter note, I have been really inspired reading the notably increased coverage of incredibly talented actors, writers and sports people with Down Syndrome achieving things some of us could only dream of; working for the BBC; featuring in award winning movies, becoming sports stars and competing in Iron Man World Championships. Wow. What examples of passion, positivity and perseverance.

Yes, our little champion will need extra help to get wherever he is going in the future, but make no mistake; when he has something in his sights, he will get there. And we will be there to fight, cry, laugh and celebrate WITH him all the way.

But for today, let’s get our odd socks out on March 21, celebrate our uniqueness and all have a very happy WDSD 2023.