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.

  /  Post natal   /  Sophie


We declined the screening for Down syndrome when I was pregnant with our first child Maisie, feeling a little different as we were ushered away from the corridor which all the other pregnant Mums appeared to be headed down. I remember questioning then, why this focus on Down syndrome? Are their lives considered less worthy? When we became pregnant with our second child, our niece had been born with Down syndrome a few months before. We still declined screening as again we felt we would love our child whatever, and welcoming our beautiful niece into our family confirmed this even more. There were a number of complications in this pregnancy, which raised our anxieties, and looking back I think I was prepared in part for something unexpected…


Hazy from the pethidine I had taken only minutes before, our daughter Sophie arrived rather quickly in the end. As she was placed into my arms, I immediately knew she had Down syndrome. I could see in her face, and in her body. I didn’t know how to raise it, with my husband Jon or the midwife. I remember thinking, I can’t ruin this moment. In the end I said something along the lines of ‘they mentioned something about short legs on one of my scans’. I could see at that moment that the midwife, who I knew personally, was upset. She then proceeded to tell Jon and I all the physical characteristics which suggested my suspicions were right. Jon and I were pretty shell shocked. We could agree she was ‘cute’ but couldn’t begin to take in the enormity of the news. We were dealt with by all the staff at the hospital with compassion and kindness. We were given a separate room; both a relief and a worry – why are we different? I remember heading for the Mums room for breakfast and heading out; silently crying back in my own room. What if they notice? What do I say?

The feeling of being different felt very strong in those early days and at times I would avoid people. I remember one time I saw a mum in a soft play centre who I had seen lots whilst pregnant. I did everything to avoid her gaze and felt my heart racing. Other times I would drop that Sophie had Down syndrome into the conversation very early – before people were able to spot it themselves. I hated the well-meaning concern from others, longing at times for them to just congratulate me and say how beautiful Sophie was. It was hard to feel like we were the source of further worry for others, especially Jon’s parents who had only recently come to terms with their other Grandchild having the condition. And then there was the love and acceptance from them and other family and friends that blew me away. My Dad, who has worked with adults with learning difficulties all his life, was unwavering in his reassurance that all would be OK. This was of great comfort, and his positive attitude towards people with disabilities has, and continues to be something I am very proud of.

I wondered in those early days, would Jon and I have a life anymore? Would I bond with Sophie? What would Maisie’s relationship be with her? There was a loss; a loss of my vision of what family life would be like – the loss of my vision of future relationships. Questions like ‘would Maisie be an Auntie?’ crossed my mind. Would Maisie and Sophie share a strong and equal relationship? But whilst the questions remained, advice I had received from others in our local support group, and online, rung out strong – enjoy your baby – you will look back and regret it, if you don’t. And Jon and I decided to do just that. A lot of the time that wasn’t hard at all. There was no denying Sophie was a cute, lovely baby. And a bond developed quickly. Those fears quickly dispelled. And as time went on I realised Jon and I seemed to be surviving as a couple too. In fact, having Sophie reinforced the shared values we had. Mainly that all life is precious. We would never have aborted Sophie, never once regretted not knowing she had Down syndrome and certainly not having her in our lives.

I remember once when I was working as a Social Worker with families, a colleague saying to me, Cassy you should work with children with disabilities. I reacted in horror. I couldn’t; I wouldn’t have the patience! It’s funny now, because I realise my fears about people with disabilities came mainly from ignorance. Often the culture and language of the medical profession only serves to fuel fear for people, like me, who had not got extensive first-hand experience of disability. The reality of life with Sophie, of course, is far better than I would ever have predicted had I known in pregnancy that she had Down syndrome.  Far from being ashamed of Sophie and wanting to hide myself away from others, I am so very proud of her. Her beauty really does shine out. She has such a way with people, often bringing a positive reaction from the least likely places. Her contagious smile makes it very hard to be down around her. Sophie, with her older sister Maisie and younger brother James, are a force to be reckoned with! Family life might be different to the life we once envisioned, but it’s chaotic and fun and I wouldn’t change it.