It’s here again… World Down Syndrome Day, the 21st of March (a relevant date as it’s the extra copy of chromosome 21 that defines a baby born with Down’s syndrome. They have three copies not two, hence it being in the third month of the year and on the 21st day, just in case you wondered). Another year offers another opportunity to shout just a little louder about Down’s Syndrome, because I can, I want to, and I kind of know a little about it all!
Ultimately all of us who have a child, a family member or a friend with DS know it is about these opportunities, they are so very important as it’s the chance to take centre stage, it’s a moment to grasp and say “stop, think and maybe/hopefully act differently”. If we don’t shout, maybe in time there won’t be anyone or anything to shout about as it is looking highly likely there may be a world without Down’s Syndrome in it… yet none of us actually know what’s in store for our future do we? An accident or illness could change our lives and mean that we too may need more care and financial support. The more stories and snippets from our lives that we can all share in these little windows of time means there is more knowledge out there to help everyone’s understanding and enable choices to be made based on correct and balanced information.
I must add that it is never my intention to make judgments or be political, merely a moment to write my thoughts and in doing so if I can educate, support and possibly help even just one person who reads my blog then that surely is a good thing.
I am very mindful of all the people in our world with many different needs and challenges, it’s just that today is about Tom, my wonderful son, who shows me daily that having Down’s Syndrome is actually no biggie!
A warm “hello”to those of you who haven’t happened upon my blog before and to my lovely followers, may I thank you all for your loyalty, your understanding and your kindness over the years as I have written about Tom and my family in between my chatter of life as a QVC presenter.
So, my bio for my twitter account says: “I’m a bubbly QVC Presenter”, (I’m often referred to as the one with the hair! ) “Mummy to three children and my eldest son happens to have Down’s Syndrome.”
Funny how we (or others) define ourselves isn’t it. The hair thing, believe me I’m super thrilled and lucky to have my mane, it’s amazing how many people who meet me have a feel just to check it’s all my own I suspect and it’s incredible how so many have an opinion on it!
In my life I’ve always been the one with the exciting job, first I was a dancer and then a QVC Presenter, and then… I became “the one with the boy with Down’s Syndrome…” gosh, suddenly I’m defined by Down’s Syndrome by default.
Tom has Down’s Syndrome..I’m just not sure that’s how HE defines himself or how we should define him.
I asked him to tell me what he is: “I’m TOM” was his simple response.
And I will add to that, he is a fabulous, kind and funny son, a soon to be 17 years old son (how has that happened), a brilliant brother, a belligerent teenager, an avid hat and bag collector! (don’t ask) A social animal, a music lover and a food monster! (I could go on and on… proud mother of course!)
Tom has needs (don’t we all!) he NEEDS more help to achieve things and those things will take more time TO achieve. Achieve he does though and those moments are so very sweet. Our everyday everythings require a lot of messages to the brain all asking for multiple things to happen simultaneously… now that’s hard for us all some times and for Tom it’s harder ALL of the time. He has a tremendous capacity to recall minute detail about past events, places he’s been to and people he has met and yet the hours spent trying to understand the differences between a one pound coin and a 50 pence piece for example have been futile… at the moment. I imagine Tom’s brain to be like a computer with loads of connections, but some of those connections haven’t yet joined up… there will be some which will suddenly spark into life and the Eureka moment happens and there will, I’m sure, be others which gently keep on sending out sparks yet they will never quite reach the intended place… maybe money will be one of those missing connections… (thank goodness for Chip and Pin!)
We all have our strengths and weaknesses though, don’t we? I for one am totally and utterly rubbish with directions, how I have got around these last 50 years I do not know but I make up for it in other areas, so I’m told! Do you know though Tom’s strengths are quite wonderful ones, he has a capacity to lift spirits, a super sense of fun, a fantastic humour, a joie de vivre and the ability to bring out the best in people, in the big scheme of things aren’t they actually just the best strengths to have? Don’t we all wish we had one or some of those..?
It’s all about the EXTRA with Tom, an extra helping of wonderful personality, of manners, of friendliness, an extra long and luxurious cuddle oh and of course… an extra helping of dinner! It kind of matches his extra chromosome… MORE rather than less in every way!
In our world many see people with Down’s Syndrome as LESS able, worth LESS and therefore LESS important, yet they are extra able in other ways, and surely it’s important to celebrate that , focus on those fabulous extra bits and at the same time be jolly appreciative of all WE can do without so much extra efforts, to be grateful our “computers” so to speak have all connections firing on all cylinders (most of the time!). Let’s all try and see deeper than the Down’s Syndrome bit… the baby, the girl, the boy the person, see beyond the label.
Tom spends a Saturday a month with the most beautiful girl he went to primary school with, they chill out, watch a film and have tea together up at her house…When I thanked her mum for having him her reply was: “he is not only polite and very well mannered, he has such a hilarious sense of humour, we loved having him round, he is welcome here anytime, we love him to bits.” To see his happiness when the date comes around again is tangible, being included is the secret to happiness for Tom, to be treated “normally”, to do what everyone else is doing, this is so vital for him because, remember, he is just Tom and wants to be allowed to be Tom just like every other Tom, Dick or Harry!
If I could ask one thing of you this World Down’s Syndrome Day it would be to think of inclusion. Ask the child with the difference at your son, daughter or grandchild’s school to tea, to the party or be brave and go the full hog and have them to sleep over! Include a young adult in your day even just with smiles and conversation, if you run a business would it be at all possible to offer a work placement, a job even, to some one with differences? They have so much EXTRA to offer don’t forget. Just start small, it’s easy once you start and I can promise you will be making a world of difference.
We are a world full of differences and I think that’s a good thing to preserve for our future.
The future I’m trying hard to make for Tom will be inclusive, supportive, sunny, happy, loving and fulfilled… if I see it and believe in it surely it will come true.
Thank you SO much for taking time to read my words I am always very grateful and will hugely appreciate your replies if you have the time.
Some links to a couple of my previous blogs where I have spoken about Tom are below, I hope you may find them useful. The Down’s Syndrome Association website also has lots of information.
Claire… and Tom xxx