Let’s talk about World Down Syndrome Day

52

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!

Claire Sutton

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.

Claire Sutton's son Tom

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..?

Claire Sutton's son Tom

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.

Much love,

Claire… and Tom xxx

http://blogs.qvcuk.com/toms-8th-birthday-how-weve-come-a-long-way
http://blogs.qvcuk.com/world-downs-syndrome-awareness-day/

http://blogs.qvcuk.com/the-definition-of-downs-syndromenow-that-is-a-hard-one-or-is-it

http://blogs.qvcuk.com/world-downs-syndrome-day/

52 Comments

  1. Tania E March 19, 2018 at 5:06 pm -  Reply

    Hi Claire

    This is the first time I have read one of your blogs I think. What beautiful heartfelt words.

    Your son is GORGEOUS, just beautiful!

    X

  2. Loraine Plumb March 19, 2018 at 7:09 pm -  Reply

    Oh Claire such a lovely blog that’s all that needs to be said how lucky you are to have Tom and he to have you all loved and best wishes Loraine xx

  3. Lucy March 19, 2018 at 7:17 pm -  Reply

    Hi Clare
    Lovely blog again Clare!
    Tom has put in to words a lesson to us all,just to be ourselves and with his caring and thoughtful nature,he obviously brings the very best out of people he meets and knows!
    What more can you say,an inspirational young man.
    LucyX

  4. Joan W March 19, 2018 at 7:27 pm -  Reply

    Claire – thank you so very much for your blog. I have read your other blogs about Tom also over the years. He seems to me to be a lovely young fellow and I hope, and assume, that he will have a happy and healthy life. Everyone of us has “special needs” and things we find difficult and ultimately he is just like everyone else, trying to make his way in the world. He will certainly benefit from having such a loving and good family.

    I found your blog beautifully written and quite inspirational.

    With many thanks.

  5. Josephine Jennings March 19, 2018 at 7:34 pm -  Reply

    Claire you make tears come to my eyes. What a fabulous blog. What a wonderful family. Tom is a unique young man, living his life joyously.

  6. Pauline March 19, 2018 at 7:37 pm -  Reply

    I am sure Tom will achieve great things.(ex Oulder Hill resident)

  7. Karen B March 19, 2018 at 8:06 pm -  Reply

    Lovely blog Claire. My best friend had an uncle with downs syndrome and he was one of the most lovely, kindest, loving and most funny person you could ever wish to meet. Your son sounds adorable and hes very lucky to have a lovely mum like you.

  8. Mrs Kath Carbin March 19, 2018 at 8:08 pm -  Reply

    Claire,I have just read your blog re Downs-syndrome awareness day.Tears came to my eyes.What a wonderful mother you are for Tom and what a wonderful son Tom sounds.Wishing you and your family happiness and a fantastic future.

  9. Linda Thorpe March 19, 2018 at 8:09 pm -  Reply

    Love reading your blogs .. Tom is a remarkable and handsome young man .. he has a life filled with love and this shines through .. have you watched the you tube video 50 mums and 50 kids it’s amazing ??

  10. Melissa Lane March 19, 2018 at 8:28 pm -  Reply

    Beautifully written blog. You and your family are truly beautiful and inspirational.

    Love Melissa. Xxx

  11. Kate P March 19, 2018 at 9:12 pm -  Reply

    A wonderful read. Thank you Claire for sharing your story. I remember first watching QVC as a new Mum myself and you had got engaged, then married and had your own family. The pride you have for all your children has always shone through. I wish you nothing but the best. Tom is so lucky to have you as his Mummy Xx

  12. Michelle March 19, 2018 at 9:18 pm -  Reply

    Lovely words from a proud mum x

  13. Michelle March 19, 2018 at 9:20 pm -  Reply

    Lovely blog Claire , I do follow your blogs about Tom x

  14. Angie Love March 19, 2018 at 9:27 pm -  Reply

    I enjoyed reading this Claire, thank you. My daughter is 19 and has Down’s Syndrome too. I wish I could post a photo as we walked in the snow today and it looked like we made it to Narnia! We also have struggles with coin recognition but Natalie knows her PIN number. I love it when we go out for lunch and she pays totally independently. She is good fun to be around and we spend a lot of time giggling. Here’s to 21. It turns out it really is something to celebrate.

  15. susan young March 19, 2018 at 9:34 pm -  Reply

    what an experience to read your blog enriched with love and enthusiasm for Tom and
    your family and so i wish you and your family good health and happiness for many
    years and many more as a QVC presenter

  16. Suzanne O Pebbles March 19, 2018 at 10:09 pm -  Reply

    You forgot to say he is a pretty good cook. Tom is an amazingly polite, talented and fun loving boy. Wonder where he got those attributes?! I love that photo of him with Joe as it shows deep brotherly love. All of your children are special and that’s down to you and Dan xxxx????

  17. Barbara Jones March 19, 2018 at 10:17 pm -  Reply

    That is the most beautiful piece I have ever read. Claire Sutton has put into words so eloquently how beautiful her son is & I wish all humans could possess the traits of downs that make them more humane to all they come in contact with. Tom is a lovely boy & Claire a lovely mother.

  18. Jo Tometzki March 19, 2018 at 10:29 pm -  Reply

    Hi Claire and Tom? l love Down’s Syndrome people. I have worked with them both as a teacher and now within the mental care sector. They do indeed have the ability to bring out the best in others and raise the moral climate. They have a lot to teach about community and real communication. My thoughts are with you ?? xx

    • Janine M F March 20, 2018 at 11:20 am -  Reply

      ‘Raise the moral climate’ – love that! So true. Well said.?

  19. Diane March 19, 2018 at 11:20 pm -  Reply

    Very well put Claire we all do indeed have our differences and our youngsters are no different in that. My Daughter has an amazing memory for places & people and the cars they drive! Innocents in a complicated world that need compassion and understanding. It should start with children being educated by their parents & teachers about acceptance so that they grow up caring & understanding that it’s the differences that make life what it is, some do and are wonderful others stare (uncorrected) but then sometimes I introduce my Daughter to them and I truly hope that within their family unit acceptance & differences are discussed, other times I find it very difficult for my Daughters sake.
    Isn’t it great that this day we can celebrate our gorgeous youngsters for the ‘extras’ they have.
    Can I also mention here the lesser known Downs Heart Group for those of us who also have complicated heart issues, they have been a great support to us over the years.
    To Tom, my Daughter & everyone else out there who just happens to be Downs Syndrome, I celebrate you & I thank you for your unique differences & for everything you can teach others every day ❤️

    Diane X

  20. Sue Howick March 20, 2018 at 7:37 am -  Reply

    A very moving and meaningful blog Claire. Thanks for sharing on such a personal level. What a lucky mum are you to have such a wonderful son, Tom. Xxx

  21. Susan Tweedale March 20, 2018 at 8:01 am -  Reply

    Good Morning lovely and Happy first day of Spring ?
    A wonderful blog and quite right too that it is all about Tom! What an inspirational young man he is, l hope he’s given every opportunity to fulfil his dreams!
    Today’s society for the most part is all about superficial stuff! And I’m not a fan at all, too many labels for this and that! Hopefully things will go full circle and it will change
    Love to you both xx

  22. Sandra Hampson March 20, 2018 at 8:16 am -  Reply

    What a beautiful blog that was! You are a wonderful lady and I’m sure you have brought up a wonderful boy. Xxx

  23. Caroline March 20, 2018 at 8:26 am -  Reply

    Just to say thank you for writing such an educational and inspiring piece about downs syndrome. I have followed your stories of Tom over the years and love to hear how he is getting on and what he has achieved. I always think how very lucky he is to have you as his mum and the amazing family he is part of. It is also clear in your writing how much he has enriched your life too. He is an incredible young man with so much to offer the world and I can see how very proud you are of him and rightfully so! Much love to you all xx

  24. Bev March 20, 2018 at 8:39 am -  Reply

    It’s a joy to read your blogs about Tom. It moves me every time I read them and I’ve followed his progress with great interest. May he continue to be joyful and give you joy too. As a Mum I applaud you Xx

  25. Hester Tulloch March 20, 2018 at 8:42 am -  Reply

    As the mother of a child /adult with a handicap I think you are brilliant, I lost my sone just before his 35 th birthday and the light went out of my life on that day.. Bless you and your family.

  26. dee March 20, 2018 at 9:33 am -  Reply

    that is wonderful, as a mum of a son with special needs who didn’t make it passed infancy I remember thinking how will I cope when he grows up, how will I deal with what other people think and say – I hope I would have been just like you xxxx

  27. Janine M F March 20, 2018 at 11:16 am -  Reply

    Claire and Tom (and family), you’re great ambassadors for life with DS. I love that you let everyone see that it’s something to love and not be afraid of – after all, what’s not to love about having MORE?
    In recent years the actor Sally Phillips’ programme about DS featured her saying something like ‘having Down Syndrome is just another way of being’, (words to that effect), and I think that sums it up. Visiting Iceland, she met a young girl with DS who spoke both her native Icelandic and English – how’s that for a measure of ability over any dis-ability we may perceive? A world without difference would be poorer for it.
    Keep spreading the joy.
    Janine xx

  28. Francesca March 20, 2018 at 11:58 am -  Reply

    Aww Claire tgat was such a lovely blog. My first read of yours and it was so lovely reading . Tom sounds like such a lovely young man you must be so proud.

  29. Sue Pringle March 20, 2018 at 12:12 pm -  Reply

    Hi Claire
    The mums and children who did that carpool karaoke were on This Morning today. If you haven’t recorded it, you must watch it on catchup. It was beautiful and you will need a tissue,
    Lots of love
    Sue xx

  30. Christine Milnes March 20, 2018 at 2:45 pm -  Reply

    What a beautiful blog love reading your blogs what a beautiful caring and lovely your Tom his love all the pictures you put on and you are brilliant presenter love when your on QVC I saw the program on this morning it was very touching you might need a tissue or two.xx

  31. Helen March 20, 2018 at 6:06 pm -  Reply

    Claire, I love watching you on Qvc always so bubbly, I can understand that Tom is so precious to you he looks like a fine young man. But what a remarkable mother he has so eloquently expressed in your blog (1st one in 20 years I’ve read) I can’t for a minute understand the difficulties you and your husband and family have over come. But as tom is a blessing to you, you in turn are a blessing to him.wishing you and all your family the very best.

  32. Delia Black March 20, 2018 at 6:41 pm -  Reply

    Hello Claire, so happy I found your blog. You are certainly blessed with your son
    Tom. Love shines through, like mother like son 🙂

  33. Claire Sutton March 20, 2018 at 7:13 pm -  Reply

    I started to write back to you all and then panicked I may miss somebody out and that would be awful as I am so touched and so happy you have thought my blog was interesting and that my son is fabulous too! Some of your comments have made me rather emotional and I feel very lucky.
    Whilst I do not “ know” you in the immediate sense of the word, I feel connected to you through your wonderful comments.
    Thankyou so much all of you
    Love Claire xx

  34. Susan March 20, 2018 at 8:24 pm -  Reply

    Hi Claire,
    Excellent blog as always. Tom is lucky to have a Mum so capable like you. I hope he is happy after leaving school. I’m sure it’s been difficult. Well done on all your efforts so far xx

  35. Keryn murphy March 20, 2018 at 9:49 pm -  Reply

    Such a lovely blog about your wonderful son , tom is a fine young man and enjoys life thanks to you and your family …. I always enjoy reading your blogs you always sound so happy and positive about things xxxx

  36. Judith Lennon March 21, 2018 at 7:57 am -  Reply

    Hi Claire
    By the time I finished reading your blog I had tears running down my cheeks. I have followed the growing up of your family over the years and marvel how wonderful Tom is. He is a lovely boy from all accounts. I hope as I say every time that people’s attitudes change towards our loved ones as humans not “beings” we all have our struggles in life and we try to do our best as families. You are a true inspiration to others. All credit to you and your family for making Tom’s life so full. Love Judith x

  37. Alison Neale March 21, 2018 at 11:37 am -  Reply

    Knowing you and knowing Tom makes my heart proud to call you friends! Odd socks at the ready I celebrate your entire family for you are the personification of love, and are an inspiration to us all! Go Tom and Go mummy your words are going to help so many people xx

  38. Christine DEVANEY March 21, 2018 at 8:27 pm -  Reply

    Hello Claire! First time for me reading Blogs! Your personality on QVC shines as ‘genuine’. Don’t change. I have a Granddaughter, aged 24 who has Downs Syndrome and is amazing. From Outward Bound trip to School Prom, she has done more than the rest of us! A young lady years ago ,who had Downs syndrome answered, when I asked for any Handy Hints, said ‘it takes courage to have a Disability’ Christine. And I believe that anyone with a disability has more courage than we imagine. Your son is so handsome! Best wishes always! Christine D.

  39. Carole March 21, 2018 at 9:40 pm -  Reply

    Claire what a fantastic blog tom is wonderful I had a friend with a Ds daughter and she was so upset when she first found out but I told her she was so lucky to have such a beautiful daughter as I told her because I couldn’t have children I would have loved a child no matter what so all children are a gift from god and they are all wonderful in there own way so god bless them all and be happy tom is a glowing wonderful son and he is loved and cherished as all children should be love and best wishes to you Tom and all your family x

  40. Victoria March 21, 2018 at 9:56 pm -  Reply

    Although I have known Tom since a little baby, reading your blog helped me understand him a little more. Tom is the kind, sweet & a totally hilarious young man. Whilst mentioning Tom I also think Joe & Maddie do an amazing job at keeping him grounded & including Tom in their social life. Good job all round Sages! ?

  41. Tilley Tinman March 22, 2018 at 4:34 am -  Reply

    Wow that was beautiful and so is your precious Son Tom Thankyou so much for sharing Having had friends who have a downs son I know all too well the challenges that they face but I also know of the immense Love Love they all have for one another as well and Love conquers all.
    Kindest regards and Lots of Love to you both from Tilley

  42. Theresa March 22, 2018 at 10:40 am -  Reply

    What a lovely story about Tom and family life, I have loved reading all your blogs and how much Tom has acheived in his life and how much fun he has brought to all of you and us via your blog, so thank you Claire for sharing x

  43. Linda March 22, 2018 at 4:48 pm -  Reply

    Dear Claire, what a interest and heart felt blogg. you have every right to be so very proud of Tom and your other two children. I love and always read all the bloggs as we watch you all every day at QVC its like reading letters from friends
    Love Linda xx

  44. Teresa Burrows March 22, 2018 at 7:05 pm -  Reply

    What a lovely mum you are,who has a precious son Tom. you are a credit to each other.Than-youi for sharing your stories and photo’s with us Claire x

  45. Judy Greenfield March 22, 2018 at 8:25 pm -  Reply

    Claire – this is the first time I’ve read one of your blogs – prompted by a tweet!
    Your words are heartfelt, and “real”. It’s wonderful to read about Tom in this blog – and the reminder of DS day, and inclusivity – something many of us strive for in our 21st century society.
    I shall read more of your blogs! Thank you for all you share x

  46. Janet Hood March 22, 2018 at 9:34 pm -  Reply

    Oh Claire what a wonderful son. It is clear you and your family give him so much love and support and they’re the most important things really, for anyone. But hey he’s your son, an individual and really rather special .

  47. Chris Howells March 23, 2018 at 6:55 pm -  Reply

    Hi Claire

    God bless you and your beautiful family, you are a wonderful mother.

    Love and warmest wishes

    Chris x

  48. Kim March 24, 2018 at 10:00 am -  Reply

    Wonderful blog as always, Claire; had to smile at the bit about Tom describing himself as “I’m Tom” – I always answer “Kim” when, as a disabled person myself, I get asked “what do you like to be called?”!! Tom sounds so special no doubt in a large part due to his upbringing . Keep on being you, Claire (aka Claire with The Hair!) xx

  49. Sue March 25, 2018 at 12:56 am -  Reply

    Hi Claire. What a wonderful young man Tom has grown up to be. He may need more help with certain things but he has already achieved the most important lessons in life with his loving ways, politeness and a great sense of humour. If we could all achieve Tom’s assets the world would be a better place. His siblings will be richer in their lives for having such a special brother.

  50. Bernadette Brooks March 27, 2018 at 4:41 pm -  Reply

    Oh Claire I’ve read your blog today and as usual when you mention family, particularly Tom I end up with tears in my eyes. Tom, Joe and Maddie are special but so are you and Dan. Your love for each other shines through. God bless you all xxx

  51. Claire Ahmed April 8, 2018 at 9:56 am -  Reply

    I just read your latest blog (my first time reading any presenter blogs actually), and as you mentioned your previous blog on World Down Syndrome Day, I then searched for this one.

    I just love love love your outlook on it all; getting rid of labels, smashing limiting beliefs and seeing the individual personality. And in fact I think it should be called “up syndrome” as any people I meet that happen to have that extra chromosome really do lift me up!

    My seven year old son Noah and five year old daughter Eden play tennis each week with another brother and sister. I just love watching all their funny, crazy interactions and what makes them all react in varying ways. My two don’t happen to notice any difference with the eight year old boy who happens to have downs syndrome, so I’ve never mentioned it.

    To all the parents like yourselves, I’d like to encourage you that all the awareness campaigns, employers taking on staff with downs syndrome and schools having mixed abilities is all helping to bring about a massive positive change in society’s view on people with downs syndrome.

    I’m so proud that my children’s primary school have children in each class that really add value to all the class’s learning. Noah and Eden don’t see children with “disabilities”, just different abilities. As a parent, knowing they understand and grasp the importance of inclusion is as important as knowing their times tables.

    Claire, you’re absolutely fabulous (but how can any Claire not be ?). Your positivity and bubbly personality clearly shows to have had the best influence on handsome Tom’s cheery disposition. Keep loving life with all the trials and mundane bits in between. xx

    Btw I’ve been a QVC watcher/shopper over 20years now. Love all you presenters but in the words of the late Bruce Forsyth “you’re my favourite” ? xx

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