World Down Syndrome Day: Raising awareness

21 March 2023

Today is World Down Syndrome Day (WDSD) – a day to raise awareness and advocate for the rights, inclusion and well-being of people living with Down syndrome. At MCS, two of our members of staff have children with Down syndrome:

• Bev, our Finance Manager, and her son, Evan (3).
• Julian, our Senior Compliance Officer, and his daughter, Elsa (26).

We want to use this opportunity to raise awareness about Down syndrome and get to know the people living with it better. This WDSD, we are also raising awareness of Down syndrome by participating in The Lots Of Socks campaign! For each member of staff that comes to work in funky or patterned socks, we will donate £5 to Down Syndrome Cheshire – a local charity that support families and people with Down syndrome.

With Us Not For Us

The theme for WDSD 2023 is #WithUsNotForUs – a campaign that calls for people with Down syndrome to be treated fairly and to have the same opportunities as everyone else. #WithUsNotForUs rejects the outdated charity model of disability, which often views people with Down syndrome as in need of support by others. Instead, #WithUsNotForUs allocates agency to people with Down syndrome, encouraging people to work with them, and not for them, to improve their lives.

Living with Down syndrome: Evan and Elsa

Recently, we had the opportunity to catch up with Bev and Evan! She shared her experiences as a parent and gave us an insight into Evan’s life.

Let’s hear what she’s got to say!

Can you tell us about your family?

(Bev): At home there is mum (me), dad, big sister, Imogen, and Evan. I love my craft, with lockdown allowing me the time to learn crochet, knitting, and basket making. Dad is a little more extreme: if he’s not working on his latest engine rebuild for one of his cars, he’s checking the wind direction to head to the beach for a spot of kitesurfing. Immy is the most caring, kind and thoughtful soul; she is always thinking of others. On the flip side, she takes after her dad, and doesn’t mind throwing herself at all possible extreme activities: ice skating, skiing, indoor ski driving, she doesn’t let much faze her! Evan is a little mischief-maker and fits perfectly into the mix. His cheeky smile is a tell-tale sign that he is most definitely up to something!

What would you like people to know about Evan?

(Bev): Evan is a little dream; he always has been! He was such a relaxed baby right from day one, extremely chilled, which he must get from his dad. His favourite song is The Wheels on the Bus, he only ever watches Coco-melon, and he gives the world’s best hugs. Evan’s favourite Makaton* sign is cake; he mastered that sign first and, in his eyes, has no need to learn any other signs!

*Makaton is a unique language that uses symbols, signs, and speech to enable people to communicate

What advice would you give to other parents who have or are expecting a child with Down Syndrome?

(Bev): Try not to worry as much in those early years and give yourself time to really get to know your little one. Of course, there is the medical side of things which is always a worry, but in most cases all resolvable. The doctors are all very quick to give you an insight into what your life will be like from their point of view, appointments, development delays, etc. But what they fail to convey is what everyday life is like: how Evan greets us every morning with pure joy, and the biggest hugs; how he doesn’t want to get dressed each day as all he just wants to do is cuddle. There is no better way to start a day! Yes, he will have development delays but who wants to rush through life anyway.

What is the biggest misconception you think society has about people who have Down syndrome?

(Bev): I am not really sure. My stepbrother, who is now 24, has Down syndrome, so I’ve always been close to it and all I see are the positives. The way in which he views the world is really quite special, magical if you like. There is no bad or evil away from the story books, only beauty and real honest love. I would love a pair of those glasses for sure!

What I do struggle with, however, is how it can be still allowed for abortions to be offered up to birth where Down syndrome has been diagnosed. This is why WDSD is such an important event and will hopefully alleviate the worry and unfounded misconceptions for all new parents as people share their stories about their amazing children, who just so happen to have an extra chromosome.

How has Down Syndrome Cheshire supported you and your family?

(Bev): Down Syndrome Cheshire has been an amazing support for us all. They provide play sessions, education workshops, including Makaton, and family days out. The list is endless. The charity is run by parents whose children have Down syndrome. Their support because of this is invaluable. They have walked the steps we are about to as a family, and the insight that they share will directly impact Evan’s progression and outcomes in life. We have dedicated education advocates, Yvonne and Amanda, who work with Evan. They also provide the space and opportunity for us to meet with other families, as it can feel a little lonely from time to time when you’re on a slightly varying path to others. I can’t thank the whole team enough; you are all amazing!

Next, we had the chance to catch up with Julian’s daughter, the wonderful Elsa! She gave us an insight into her life with Down syndrome as we got to know more about her and her hobbies.

Let’s hear what she had to say!

Can you tell us a bit about yourself?

(Elsa): My name is Elsa and I’m nearly 27! I’m moving into my new flat soon, which I’m very excited about. I love films and going to the theatre, musicals and pantomimes are also my favourite.

What are some of your gifts and abilities?

(Elsa): I can read and write and I’m good at sums and calculations. I can swim and I love writing stories.

Is there anything that seems more challenging for you?

(Elsa): To overcome fears of heights if I’m on a zip wire or outdoor rock climbing.

What would you like people to know about life with Down Syndrome?

(Elsa): I want people to know that I’m not ashamed of it. Since the age of four, I’ve performed in many shows in my life. I have never stopped performing and I don’t want to be judged. When I was 20, I was the Gala Queen in my hometown, Mytholmroyd!

Thank you, Elsa!

Follow us on social media to see us participating in The Lots Of Socks Campaign today!