This is Tom, my son, my spectacular son. Yes, Tom has Down's Syndrome, but that's just a title… so to speak! He is soon to be 13 and blasting the stereotype of a typical child with Down's Syndrome out of the water…!
As this is Down's Awareness Week, I'm increasingly aware of the importance of educating young and old about Down's Syndrome and this year the focus is on the education of health professionals so they are better informed and therefore more able to provide suitable care for the health needs of adults with Down's Syndrome.
Friday is World Down's Syndrome Awareness Day, celebrated appropriately on the 21st of March, as an extra copy of the Chromosome 21 is what Tom and all those with Down's Syndrome share. In some respects it's the very chromosome that made Tom the Tom that he is… but actually, which bits of Tom are the Down's Syndrome bits and which are just Tom?
I thought a little insight into Tom's incredibly normal life, achievements and challenges would be a lovely and rewarding blog to write for today and I am always hopeful that this may help others who are in their earlier years to realise that the journey can and will be one of joy and fun (along with the inevitable tears and difficulties) and that it may offer a chance to see that Tom is really just the same in so many ways as any other child who is heading to his teenage years.
This week I showed Maddie a link that was posted to me on Twitter, she watched, we sniffed and smiled and she said she' d like to show that link in assembly at school on Friday…I sniffed some more and scrimmaged for a tissue!
Particularly as just that weekend during a netball match a girl who was playing against Maddie's school team called her a spastic….it's horrifying to hear that words like that are still being thrown around. Let's educate please and stamp out the ignorance which continues to breed. Maddie wants to do just that by sharing that video and I hope school will find the moment for her.
The other afternoon we arrived home from school having endured Olly Murs (sorry Olly, but Tom's need to play your CD repeatedly on our school runs is a tad trying to say the least!) as we approached I asked Tom to pop the bins back to their usual place, unsurprisingly a tut came from behind me (a kind of Kevin style aka Harry Enfield)!
But that said, out he jumped, impatiently waved the car on and marched up with the bins to return them to the right place. Down's Syndrome doesn't get him out of chores! "Shower and hair wash Tom!" Tom's response? (insert noise equivalent to a grunting stroppy teenager).
What is it about the hair wash?
Fast forward to an emptied water tank, the smog of Linx and scent of aftershave pervading throughout his bedroom! Tom prepares for Youth club, the outfit has to be his choice (stubborn) then off he goes to connect with his old school friends and… well, just chill (or whatever they do at youth club these days- probably best left with the chill thought!).
I decided that Tom and I could go and do something else and have some special time (translated to "Don't worry Tom, I'll make it up to you that you're not invited"…). However, as I do often find happens, a text came through: "So sorry to be so late in asking! But of course Tom can join in, if he'd like?"
Yes, he'd like it, in fact he'd love to join in… but you know I'm always grateful, no matter how late he is added to the list! Oh, and I have been known to ask occasionally (don't ask, don't get ), Tom never holds a grudge or feels unwanted… and actually he IS wanted, it just slips people's minds to ask sometimes.
So skating for all three it was! I was proud as he manoeuvred around on his roller skates recalling how late he was to the party with walking… now look at him. Down's Syndrome doesn't stop him wanting to be with the others, nor being capable of it!
I was bursting with pride when on numerous occasions we were told he was polite and friendly at his school's Parents Evening the previous week – a pleasure to teach and achieving more than they had projected for him. Wow, music to our ears. His science teacher said: "Tom has a better grasp of science than some children in his class who don't have Down's Syndrome". Tom is such a part of his form, his school and has made some great friendships. Down's Syndrome doesn't mean mainstream schooling can't be appropriate for some.
I took Tom into QVC with me recently, he was quite at home, chatting away, greeting everyone with his outstretched hand, and the words "I'm Tom, nice to meet you!" He proudly and confidently showed off his wicked sense of humour, fantastic personality and gorgeous good looks.
He even got himself booked in for some Work Experience when the time comes! (think the cuddle he gave Tina won her over – it could win anyone over I'm telling you!). Down's Syndrome doesn't mean you can't have plans for the future.
In fact, what DOES Down's Syndrome actually mean? How can we define it..?
I know there are some of us with such differing stories and for some, the life they lead is more challenging and very different to ours with Tom. It'd be wrong to suggest the proverbial roses are always blooming round the door.
Yes, there are battles and emotions, fears and concerns, but when we do see those roses, we see not the thorns but the deliciously rich, velvet, heavily fragranced roses themselves… just as when I look at Tom, I see not the Down's Syndrome bit, but my beautiful blonde-haired long-limbed eldest son. I see sparkly eyes and a smile that lights up the day. I see Tom, and boy oh boy is he a sight for sore eyes!
I hope you too can see our different babies, children and adults with Down's Syndrome for who they are and not see just the title they were stamped with at birth. Let's help to make that happen!
The power of the photographic images presented by the 'Shifting Perspectives' team continues to support the work of the Down's Syndrome Association.
With my love and affection to so many of you who share my journey and understand my dreams for Tom
Follow me on Twitter @clairesuttonqvc
Watch the inspiring video below, dedicated to parents who have children with Down's Syndrome!
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Down's Syndrome Association – Helping people with Down's syndrome to live full and rewarding lives.