Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Oscar


I’m Sarah, married to Chris and Mum to three little ones – Oscar, Alfie and Flo. I think for the most part we look like your average family of 5. Having danced for a living, I’ve since found my passion in writing. Chris, works in the city as a banker (promise he’s not a w#%*$r though) and loves rugby and cycling. Oscar our eldest, is an avid fan of Justin Fletcher and a whiz on the scooter. Alfie, partial to the odd biscuit or 10 adores Dinosaurs and Flo can be found most days, pushing her “bebee” (baby) around in her buggy or dancing to the Peppa Pig theme tune.


Not altogether different to your family you might think?… except Oscar, my eldest at 5 years old, has Down Syndrome.

We hadn’t known about the Down Syndrome before he was born and despite having the screening and it coming back as “low risk”, (despise the word “risk”… “chance” is a lot better surely?) it appeared Oscar and his Down Syndrome, had slipped through the net.

If I’m completely honest, I was devastated. When the paediatrician said, “I’m sorry but we suspect your baby has Down Syndrome”. My world, in that instant, changed, I genuinely thought it had ended.

I think before Oscar, I naively thought that “bad stuff” didn’t happen to people like me. You see, that was my attitude then. The “bad stuff” I was referring to was the Down Syndrome, which in hindsight, 5 years on, is so far removed from what I think now.

I was a broken woman in the beginning, spending hours a day worrying about Oscar’s future, our future as a family and what it meant having him in it. I worried about how he’d cope, how we’d cope…I worried a lot at first.

Five years on, I can see how my world has indeed changed, but not for the worse… If anything for the better. It’s taught me ALOT of things. It’s taught me, that youll be ok whatever gets thrown at you. You have to be. It’s taught me not to sweat the small stuff and it’s taught me an awful lot about the NHS and the medical world. But mainly its taught me about love. The love you feel for your baby of course but also the love you feel for your husband… who in times of your despair and heartbreak, has total and utter acceptance of your little baby and puts up with your hysteria. Maybe for one miniscule of a second he might have thought, I didn’t sign up for this, but mostly an ability to not let anything phase him. My Chris.

It wasn’t always refreshing – at first I was so cross with him. How could he be worrying about the borders in the garden, a day after we get discharged from hospital, while our world was falling apart? How could he not be crying? He cried initially but then that was it. Done. He’d cried, now he was just getting on with it. Simple.

My parents, my sisters, the inlaws, extended family and friends – the outpouring of love and support from them at that stage was incredible. They felt blessed to have Oscar from the start and excited to be part of his life.

Having Oscar and his Down Syndrome taught me that sometimes life doesn’t go the way we plan it to and takes a different path to the one we first thought... I guess that a lot of us can find that relatable, in whatever their circumstances?

So that’s us in a nutshell. Sure there are ups and downs and challenges along the way but as I always say, who wants to go to their grave saying they lived an average mundane life right? Life isn’t always easy but for the most part and this is no word of a lie, our life with Oscar in it, has been made. Before I had Oscar, I had an image in my mind of what Down Syndrome looked like to me. I saw a man with Down Syndrome, walking through a shopping centre holding hands with his elderly looking mother. He had a dodgy looking haircut and trousers that were far too short. They both looked sad.  Five years down the line, I’ve realised how outdated that image was and that having Oscar has been the making of our familyHe’s the little boy who inspires me every day.

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