Claire's son Tom

World Down’s Syndrome Day

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Hello to you all, it’s another year where we celebrate World Down’s Syndrome Day on March 21st – the 21st day of the 3rd month which represents the 3 copies of the 21st Chromosome which are present in more than four million people worldwide who have Down’s Syndrome.

So why have WDSD? It’s a day to draw focus and be appreciative of all the wonderful people who are supportive and kind and who recognise that the extra copy of the chromosome 21 changes nothing about the qualities of that person, it’s just one part of their identity, it doesn’t define them.

It’s also a day to remind people and perhaps educate some about the brilliance of those with Down’s Syndrome, yet also be mindful of the difficulties they and their families may, and indeed often have to cope with.

Tom, my ‘almost as tall as me’ boy! is responsible for changing many people’s perceptions, including my own. I adore him, I admire him, I laugh with him (loads) and yes, I am frustrated by him (on more than a few occasions!).

Claire's son TomClaire's son Tom

I parent him as I do my other two wonderful children (well, almost!) as there’s a fiercely protective streak that surges forth for all our extra ordinary children and believe me it’s been surging rather more than not recently, what with the various issues we’ve been challenged by.

It was certainly in permanent surge mode as I fought relentlessly for Tom’s appeal to the Local Authority. They conceded, so we finally have support for Tom’s journey to school. I have refrained from yelling ‘YES I TOLD YOU SO’ in a most unattractive manner!

Instead I am giving thanks and appreciating all it will mean for us as a family going forward, yet in the back of my mind lays the thought of others who couldn’t complete their battles through the sheer exhaustion from the repetition of the ‘I understand, but sorry NO’. I have become incensed by the ‘I understand’ phrase – unless you’re living it, you do not understand. ‘Empathise would be a better choice of word’ I found myself suggesting on more than one occasion!

The fiercely protective streak surged again as I’d begun to recognise that my son isn’t  able to take his place in our society as he is not yet able to safely navigate roads, trains, buses, the shops… the list is endless as was Tom’s evident sadness and  growing frustrations.

Now support has been allocated to develop Tom’s ability and independence and help him to participate more in all the things an almost 14 year old would hope to! The support is small, but … it’s a step.

Do you know, maybe  the surge has never actually died down since I first looked at Tom’s tiny, blue-tinged face nestled in the blanket after his birth, and I instinctively recognised his differences, perhaps  it’s constantly raised so it’s ready to draw upon as and when needed.

Claire's son Tom

Claire's son TomClaire's son Tom

For me, well for us as a family, I feel immensely lucky that we have barely whitnessed or perhaps have been blissfully unaware of ignorance and prejudice, in fact the opposite. We have amazing families, the best of friends and for us, an overwhelming feeling of acceptance from almost everyone, we and Tom have come across in these 14 years.

Our personal stories of mainstream schooling have been full of joy, acceptance and yes lots of hard work from all parties, yet for others with this exact same ‘title’ of ‘Down’s Syndrome’ this has not been the case, proving once again that the extra copy of the chromosome number 21 may be the same, but all our children are so very different.

The press and social media are mostly full of positive messages, the odd saddening comment slips too easily from some which scalds my heart with a searing and indignant pain. ‘How dare they? How could they? What do they know?’ It feels like it’s a personal attack about Tom, even though it’s not.

Words have a terrible habit of lingering don’t they? Like a dark cloud enveloping the sky and why is it that the damaging ones hover oh so much longer than the lovely ones?

However, on the whole I do feel our society is accepting, dare I even suggest embracing in some cases of the differences that make up our world.

Much of that has to be due to the contributions of some amazing bloggers, some of whom I follow on Twitter. In particular Hayley Goleniowska @DownsideUp who is an incredible, motivated and quite wonderful mother to Natty. You may have seen Natty in modelling campaigns and chatting on TV. Hayley, along with millions of others, share their experiences, their stories and offer a vital point of contact, information and support for many parents in similar situations.

@sarahgordy, a superbly talented actress (who also happens to have Down’s Syndrome) and Ruben  Reuter, a super young lad who appears in CBBC’s Breaking Free and The Dumping Ground both inspire and thrill me. ‘There are no limitations’ is the message I get from them both and feel excited about Tom’s future.

Winner of  ‘blog of the year’ and ‘best writer’ for his touching and inspiring blog @FuturesRosie Tom has helped so many new parents see how Rosie’s addition to their wonderful family is an utter joy and how fear, worry and the sadness felt in the early days and weeks by so many, can and are replaced by  pride and happiness. I for one have relived many poignant moments of my son’s development when seeing and sharing in Rosie’s milestones.

I learn much from @Orangejuicesky (Paul is Emily’s Dad and has many years of knowledge to share with those of us facing hurdles he has already successfully negotiated and he writes poignantly. I’m always smiling and hopeful through my tears when I read his words.

Oh there are so many, too many wonderful supportive people out there to mention here, who ‘get it’. If I can be one of those people who help others by my words and my chatter about Tom and his everydays – his ordinary ones and his massive achievement days then I am grateful I have the chance to do that.

Over the years I have had the privilege of speaking with so many of you here on my blog, during events at QVC and recently through Twitter @clairesuttonqvc. You change my days, you truly do, THANK YOU  so very much for your unfailing support on those ‘not so marvellous’ days, those days of battles and frustrations and occasionally sheer sadness days and THANK YOU, massively for sharing the frequent, spectacular moments with me – the smallest things, the funny things, and well, just ‘things’ about my beautiful, amazing Tom, my son (who just happens to have Down’s Syndrome). May I ask that you celebrate along with us this World Down’s Syndrome Day. Celebrate the joy, the love and the fantastic achievements that Tom and all our children and adults with Down’s Syndrome are notching up not just today but every second of every day.

Oh and Tom wishes to say hello!!

 

Having trouble viewing this video? See YouTube’s Help page

With our love,

Claire, Dan, Tom, Joe and Maddie

Xxx

43 Comments

  1. Judith lennon March 20, 2015 at 7:02 pm -  Reply

    Hi Claire
    Loved your blog and reading all it contained. Thankfully society has come to recognise that Downs children are “people” not “beings”. There will always be those who feel otherwise but their loss for not learning more about Downs is such a shame. My daughter works with children like Tom and she sees only good in them and sees through their problems and encourages them when they get frustrated. Tom has come such a long way and is such a credit to himself and you and your family. He will continue to amaze you and frustrate you as all children do, but he will always be your “Tom”. I hope today will re educate those who shun them. Take care. Judith xx

  2. Paul Critchlow March 20, 2015 at 7:55 pm -  Reply

    Oh Claire, this is just beautifully written. You got me – you definitely got me! You should write more – do a guest post for my blog :) Pleeeease! And well done to Tom – thank you for sharing that Tom x

  3. Susan March 20, 2015 at 8:03 pm -  Reply

    Hi Claire and Tom! I’m so pleased you are all well and the enjoying the day tomorrow. Thanks for sharing lovely photos and experiences. You’re a gorgeous boy tom! I wanted to say Claire you should write a book one day about your experiences. You write beautifully x

  4. Twinkle March 20, 2015 at 8:10 pm -  Reply

    Oh Claire my amazing sparkling fairy

    Im sat typing this with tears running down my face, this blog is absolutley beautiful and has really touched me.

    I cant help feeling immensley proud of your Tom when ever he achieves something so great – I love hearing his stories on her and Twitter, he is an AMAZING young man who I know will go far xx

    All of your kiddiwinks are AMAZING hun and you must be so proud of them they are a real credit to you

    And of course they have the best Mummy and Daddy ever You and Dan are wonderful Tom, Joe and Maddie are so lucky to have you and I am so proud of you ( gushy I know but I have seen your lows and frustrations and just want to give u a hug as you just fight and do whats best for your children and just be amazing you )

    I will be doing mty part for Downs Syndrome Day I promise

    love ya lots my special glittery friend and dont you ever forget how amazing you are xxx

    sending love, hug and a shed load of glitter to you all xxxxx

    PS I promise it will be with you soon ( you know what I mean ) Im not letting you down, not afte all you have done for me too – MWAH!! XXXX

  5. Hester Tulloch March 20, 2015 at 9:00 pm -  Reply

    What a wonderful son and a credit to you and your family. My eldest son was born mentally and physically handicapped, he was at home all his life and had a very full and busy life, he was 7 foot tall and in a wheelchair very happy with his lot in life. I sadly lost him when he was 34 but he brought me 34 years of love and joy and was a very special gift, cherish Tom.

  6. Deniseabbott March 20, 2015 at 9:23 pm -  Reply

    LOVE your blog, have been following you and Tom’s story(that’s what I like to call it ) from when I first found QVC.Seen Tom grow into a nice young man.Thank you.x

  7. Benita Jenkinson March 20, 2015 at 9:30 pm -  Reply

    Hi Clare , Have watched you on qvc for years and have always admired your proud way of including all of us at home in the tales of your family and its challenges. yet you take it all in your stride. Many times I have commented that life in the Sutton home must be fun and does include a fun mum who loves her family to bits, You have the ability to rise above all that life gives you.
    I admire you for looking to make Tom more independent as he grows up as with help and guidance we know young adults can go out into the real world and make a real difference.
    I don’t see these children titled ‘Downs Syndrome’ but like all other children SPECIAL.
    Love to all of you
    Benita
    PS. Tell teddy n Tom I love them too.

    PSS
    Clare this is the first time I have read a presenter blog, but will continue to follow you.

  8. Liz Holmes March 20, 2015 at 9:44 pm -  Reply

    Hi Claire, I have just watched Tom’s video and read your blog ( both above) and am full of admiration for you all as a family in the way that Tom is such a wonderful part of your life and how much he loves you all and you him. He is a lovely, beautiful boy. One of my work colleagues from many years ago had a Down’s Syndrome daughter called Susan who used to come with her dad to pick her mum up from work. Susan would give her mum a big hug first and then hug all of thirteen of us in turn before she left with her mum and dad to go home. She was so loving and I’ve never forgotten that. I’m sure your Tom makes you just as proud as Joe and Maddie do. Love to you all. Liz

  9. christine jones March 20, 2015 at 9:46 pm -  Reply

    Hi Claire, just wanted to say how truly lovely is your boy Tom and your aspiring cookery presenter Maddie… my friends daughter had her gorgeous boy with downs syndrome a year ago on Christmas day, a gift sent from God to them as He knew what He was doing.. The little one is growing in a family full of love like your Tom is.. Isnt he so lovely , he must be such a blessing in your life and what a wonderful teenager he s becoming.. you can be justly proud!!!! You re a super mum and the love you ve invested in you re children is clear to see in each of them… tell Tom that I for one will be supporting world downs syndrome day and if I had nt have seen his video I wouldnt have known about it… Well done Tom!!! You have a unique purpose in this life, to reach out to others in your own special way.. Lovely to meet you.. xxx

    And Maddie, I will be trying your smoothie.. Very professional and clear and no faltering.. Well done..

    bye for now Claire and family.. I keep you all in my prayers and send love and hugs… Enjoy 21st day!!!!!! X

    lots of love
    Christine xxxxxx

  10. Marverine Cole March 20, 2015 at 9:51 pm -  Reply

    Super blog, Claire. Thanks for sharing your news and reminding us of WDSDay. Congrats on your triumph re the Local Authority too. Loved the video with Tom, first time I’ve seen him. Love to you and all your family this weekend. Marv xxx

  11. karen pearson March 21, 2015 at 12:45 am -  Reply

    Tom still has a place in my heart. Sophie and I still miss him. Reading the above has made us very happy and we have both shared this on facebook. Tom saying that having downs syndrome makes him happy made us both smile. They have a gift of loving and caring for people that i personally find beautiful. Tom is a gift and loved by so many. Thank you for sharing World Down Syndrome Day.

  12. Michelle Roberts March 21, 2015 at 1:34 pm -  Reply

    Tom you are amazing and so very lucky to have a fabulous mum. Claire , thank you for sharing your story, you brought a tear to my eye just such an uplifting blog x

  13. jo March 21, 2015 at 1:39 pm -  Reply

    Claire,what a wonderfully written article,you have three gorgeous children,there is so.much ignorance in the world regarding children with special needs, hopefully the dsy will come when ignorant people can see past the disabilities and realise the only disability is theirs and their outdated opinions, love to you and your family x

  14. CORRINNE FARMER March 21, 2015 at 2:36 pm -  Reply

    SO LOVELY TO READ YOUR WORDS ABOUT YOUR LOVELY SONXX

  15. wendy thomson March 21, 2015 at 2:44 pm -  Reply

    Wonderful, all these years of watching qvc and I never knew you had such a special son…. I too have a down syndrome son, who also has autism and is such a joy…. god bless you and your family.. xx

  16. Bernadette Brooks March 21, 2015 at 3:15 pm -  Reply

    Claire, I love reading your blogs, they always move me, either I’m laughing or, like today, filling up at how hard you have to fight for your beloved Tom. I am so pleased to hear that you have won your latest battle with the local authority. You have a wonderful family. Love Bernadette

  17. Sandra Belchambers March 21, 2015 at 3:22 pm -  Reply

    Amazing, informative blog which highlights what an inspiring family you are. Thank you x

  18. Tina Harrington March 21, 2015 at 4:41 pm -  Reply

    Gosh Tom has grown, what a lovely young man

  19. pat bird March 21, 2015 at 5:34 pm -  Reply

    Downs are special people who bring so much joy to the world and all the folk that have the privilege to know them

  20. Carol whitfield March 21, 2015 at 6:47 pm -  Reply

    Hello Claire I remember when Tom was born. Yes I’ve been watching QVC that long. You have done a fantastic job and Tom looks to be a gorgeous lad.. carol

  21. Sue Lee March 21, 2015 at 7:45 pm -  Reply

    Go Claire Go!!!!! Congratulations, Tom. Yours in admiration , Sue x

  22. Bev Mason March 21, 2015 at 8:34 pm -  Reply

    Hi to you all. Enjoyed the blog and looking forward to the day that Downs passes no more comment than the colour of someones eyes.

  23. DebiLea Barker March 21, 2015 at 8:57 pm -  Reply

    Hi Claire, I felt I had to tell you how beautifully written your blog is…
    You can feel your Lioness pride over Tom through your words and just how immensely proud of him you are, to be his mum and he your son!
    ‘Different’ can be seen as a negative, something to be afraid of, to avoid, to not try to understand, but in life we should all be open to learn from ‘differences’, it’s what makes us individual, each and every one of us and to open our minds and hearts to accepting differences would make this world a very happier place…..
    x

  24. liz March 21, 2015 at 10:06 pm -  Reply

    Claire here I am beautiful blog on downs day it’s made me cry as you know I have a physical disability cerebral palsy all the love too you claire Dan tom joe and Michael your little girl love Mrs liz price

  25. Sandra McKenna March 22, 2015 at 12:02 am -  Reply

    Claire Tom has the most beautiful smile you must be so proud of him God bless you all xx

  26. Lesley March 22, 2015 at 12:33 am -  Reply

    So glad you won the appeal Claire… It’s been a long slog for you but you did it. Love Tom’s video :-)
    Thinking of you often and sending love and hugs xoxo. Lx

  27. Alison Keenan March 22, 2015 at 12:45 am -  Reply

    My dear friend, I so enjoyed reading your blog and seeing all the photos of Tom, while sharing your memories. I can’t even begin to imagine the emotions you so often struggle with, but just wanted to say that you, Dan and all three of your gorgeous children should be proud for encompassing all that a family should be. It’s not easy, and never has been, but you continue to prove that love, perseverance and determination can turn the most difficult of situations into a triumph. You have shown me this when I have been despairing, and I will be eternally grateful. Keep on doing what you’re doing, and as is evident to us all, your beautiful boy will continue to grow into a lovely young man. Thank you for sharing this with us, love Ali xx

  28. Julie March 22, 2015 at 8:25 am -  Reply

    What a fantastic message well written and a joy to watch Tom he is amazing ! I don’t usually write comments but really had to on this occasion, Best Wishes and happiness to you all x

  29. Ray White March 22, 2015 at 8:27 am -  Reply

    Tom is a lovely normal 14 year old I expect, I have a grandson the same age wouldn’t care to be filmed either love you Tom and your lovely mum and family go Tom

  30. Dawn J S Forrestet March 22, 2015 at 9:44 am -  Reply

    Amazing young man Tom With a very loving family. God bless you all

  31. Patsy Dunne March 22, 2015 at 2:21 pm -  Reply

    Claire, what an inspirational blog. I felt so moved reading it. Tom is a lucky boy having such a lovely Mum. I wish you all well, Patsy

  32. Linda March 22, 2015 at 9:35 pm -  Reply

    Dear Claire,
    What a lovely blog again. I do not always write back but I always read them and get a lot of joy out of them. You must have a great deal of energy and commitment which is so lovely to see. I hope that all the family are all well, and that you keep up your fight.
    Love to you all
    Linda.
    xxxx

  33. Lynda Rodgett March 23, 2015 at 12:06 am -  Reply

    We Love you too Tom, you are a lovely boy, a credit to your Mum&Dad, stay Happy! Big Hug! Xxxx

  34. Ann March 23, 2015 at 10:35 am -  Reply

    I remember when your precious boy was born, also when you so proudly presented him on air. I wish you and your family everything you desire. Tom, you are such an inspirational Young Man and I can’t believe you are 14 already, time passes so quickly. Lots of love to you all.
    Xxx

  35. Neil March 23, 2015 at 10:43 am -  Reply

    Hi Claire,
    I’ve worked with a charitable organization for young people with learning and other disabilities for over 35 years now. Some of the people I work with are also Down’s. They are genuinely some of the loveliest people I know. They are so loving and caring. I work with those who have a wide range of abilities, from 11 to 25. I’ve heard you mention Tom on the Q over the years, but it’s lovely to finally see and hear him. Best wishes to All, Neil.

  36. Melissa Lane March 23, 2015 at 1:02 pm -  Reply

    Hi Claire, I enjoyed reading your blog, especially the video of Tom, who clearly has an immense sense of humour ( and mischief)! Thank you for sharing your family’s successes and challenges with us. I was lucky enough to spend some years teaching children in both mainstream and special school settings and saw some of the challenges met by their parents in ensuring that they had opportunities and support to grow and develop. It is a shame that many times this involves a battle with authorities. All three of your children are very lucky to have a mummy like you. May the battles become less and the successes become more.

    Love Melissa xxx

  37. Sue March 23, 2015 at 5:28 pm -  Reply

    Hi Claire hasn’t TOM grow into a handsome young man I hope he can run fast because he will have to run away from all the girls chasing him haha God bless himXX

  38. Nicola March 24, 2015 at 11:30 am -  Reply

    Hi Claire I have just read your blog and it really made me cry!
    Your journey with Tom was so beautifully written it truly came from the heart. I myself have a sister who was born with mental disability and has to be cared for 24 hours by wonderful carers. My mother and father died many years ago when I was young and cared for my sister right up until they could no longer cope, the decision was tough for my mum to let her go and be looked after be someone else after nearly 30 years. Tom is such a wonderful boy and you Claire are an amazing mum giving him all the opportunities and experiences he can have in his life. It is lovely to see such a warm caring family who grow together and face what life throws at them, as we did. I wish you all future happiness and that Tom continues to be happy, healthy and most of all bringing you all such love as my sister still does to me. Xx

  39. Margaret March 25, 2015 at 12:44 am -  Reply

    Hi Claire i enjoyed reading your blog may i have the pleasure in saying your son Tom is a handsome young man he is a credit to you all please tell Tom i said hi and that his video was just lovely big hugs
    Margaret

  40. kath March 26, 2015 at 7:05 pm -  Reply

    Clare just read your page on dsd why do folk think a child with downs is not all there makes me so mad take care and love to all your family xx

  41. Sue Barrick March 31, 2015 at 8:10 pm -  Reply

    I have loved reading about Tom and we too have celebrated WDSD. My special boy Ben is 11 in May and starts high school, he’s so excited. We are so proud of him and all his achievements especially managing to remain in mainstream primary to the end. Ben starts a special high school in September but we know already it is for the best, teenagers can be cruel but most of all like Tom, Ben needs life skills and to learn independence. We have applied for transport to school and next week they are coming to assess him to see if he can travel independently, sadly he has no road awareness etc so it’s not possible, let’s hope they agree. We too have been lucky and not had or at least noticed any bad feeling towards Ben he has loads of friends and is my inspiration.
    Xxx

  42. martin forbes April 7, 2015 at 2:45 pm -  Reply

    hi clair how are you and your family i am not bad

  43. Shirley smith June 2, 2015 at 11:19 am -  Reply

    Handsome young man xxxxx

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