The thing is, at the beginning, all you can imagine is unhappiness and dissatisfaction, such sadness as all your dreams and imaginings for your child are shattered. I compare it to a beautiful stained glass window, created by your conscious and subconscious thoughts and visions of your child during your 9 months of pregnancy, all those things he or she will do, all those things he or she will be… and then someone comes along and takes a huge placard that says DOWN SYNDROME and smashes it into your magnificent stained glass window…. And all you see are the shattered pieces all over the floor with this huge ugly sign clearly and blatantly spelling out in capital letters, something you really really don’t want to see. But the reason you don’t want to see it, is that you are frightened by it, and the reason you are frightened by it, is that you don’t know anything about it. It is quite simply fear of the unknown – and hey – EVERYONE has that!!
Often at the beginning, we find ourselves as parents transported suddenly into an imagined future with fearful imaginings of young adults who will be unable to function and achieve, and who would be unable to enjoy life as much as we do. Well just so you know … THAT JUST AIN’T TRUE HONEY!! Yes of course there is deepest heartbreak and despair at diagnosis and during those early days. I remember being left alone in a separate room off the maternity ward, weeping as I imagined all the things my son would never do and all the things he would never be, and watching my imagined future draining of all colour and turning grey…. and yet here we are, 21 years on, and I can let you know that my world, and my life with Oliver, has been more vibrant and COLOURFUL than I could EVER have imagined!!!
Yes, my baby boy had open heart surgery, and yes he was diagnosed with extremely poor muscle tone (hypotonia) and verbal dyspraxia (severe difficulties with speech production) and yes the Physiotherapist told me he would never be able to enjoy sports, and the Speech and Language therapist told me he would unfortunately probably never have speech with clarity enough to be understood by an unfamiliar listener. But you see, I’m a very awkward kind of woman, and if someone tells me I can’t do something, well I just have to SHOW THEM!! So I came up with all manner of activities, strategies etc to help my boy be amazing, and amazing he is indeed. He was skateboarding at 7 years old (what do physiotherapists know anyway… ) and has been interviewed on radio and television about his photography, and is MORE than able to make himself understood! He has a fantastic vocabulary and for example describes his music tastes as ‘eclectic’.
And you know somehow, because everything was more difficult for him to achieve, and so many things proved to be so much more of a challenge – that somehow made everything he did do so much more AMAZING with great celebration! NOTHING was taken for granted and so every step was WONDROUS! The secret?
ENJOY your child. ENJOY the difference!
At the beginning I know it’s difficult but honestly – it is SO important!
Personally, I can say to you now with my hand on my heart – if presented with a magic wand to take away my son’s Down Syndrome – I would decline. I would not change my son. Down Syndrome is woven into the very fabric of his being and if you took it away he would not be him. He would be someone else. And you see I love and adore him EXACTLY as he is. I am very happy and very proud of, the son I have thank you! There are some who might say, but surely, that’s quite a selfish attitude because if such a choice were available, then surely as a person without DS he would have a better, happier and more fulfilled life? Really? I challenge you to find ANY other ‘ordinary’ 21 year old who is having a BALL and enjoying life as much as my son. My daughter, who was 8 when Oliver was born, has WAY more worries, responsibilities, fears and unhappiness in her life than Oliver does.
Oliver is NEVER EVER bored. Since a young age he has been exposed to, loved and been interested in so many things. Wildlife, The Countryside, Animals, Birds (his knowledge and identification ability for all species of bird is extraordinary), Skateboarding, Football, Snooker, Cars (he’s a Top Gear Fanatic and can identify any car you care to show him). He enjoys History and LOVES going fishing, and of course Photography which he is now best known for, is a great passion. His sense of humour is hilarious if random at times, and his unique perspective on life has taught me to view the world a little differently, and I am a better person for that.
Oliver, in common with so many other children and young people with DS I know, forges amazing ‘connections’ with several ‘special’ people in his life. They are all different, and don’t seem to have anything in common other than their genuine enjoyment of Oliver for exactly who he is.
Through and because of Oliver I have met the most valued and important people in our lives. We have collected them it seems, as we have travelled along this wondrous journey and I am so deeply grateful for that.
And here we are today…. Having enjoyed a day’s fishing with his Dad, Oliver has just walked into the room holding two snooker cues, and handed one to Mike saying –“So Father – are you ready to be thrashed?”
Oliver appeared live on BBC’s ‘The One Show’ in 2015 and has since published the only book of photography ever by a person with DS.
He has a facebook page for his photography with a following of over 65,000 people, and through his website at we receive orders from ALL OVER THE WORLD.
No-one was able to tell me all this as I sat weeping in that little hospital room holding my new baby….. So I am telling it to YOU.
And so the unexpected journey continues. Oliver lights up our every day, he makes us laugh and look at the world differently and I am forever grateful for that. He loves his friends and family, and he is very dearly loved, enjoyed and valued by them. He is a wonderful, hilarious, talented, extraordinary, random, awesome young man. And this world is all the richer for his being here.