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!).
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.
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!!
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With our love,
Claire, Dan, Tom, Joe and Maddie