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   /  George


It is unsettling, and also seems totally ridiculous now, as I reflect on the depression and negativity I was consumed with, when our second son George was born. He is now 5 and alongside his older brother, is the greatest love in my life and the source of all that makes me truly happy.


I am ashamed to say that due to my lack of interest or research I knew nothing at all about down syndrome before his birth. I had no idea what it may involve as a parent – just that it’s top of the list when it comes to eradication and therefore it must be really, really bad. Anyway, I’d thought I didn’t need to know – I have great genes and it won’t happen to me!! I had the test, the result – 1; 300 ‘risk’ of Down Syndrome which I hid from my husband (who is way more risk averse than I am, and was very clear that he didn’t feel he could raise a child who had any sort of additional needs) and I didn’t think about it again.

I went to a funeral the day before George was born unexpectedly early and this set the tone for the months to follow. The pregnancy had felt like a long and tiring episode with sickness and I couldn’t wait for it to be over and regain some energy, some joy with my perfect new baby who would complete our not yet perfect family.

Looking back this high level of expectation was my downfall – as it is for so many women, those early months were not as I had pictured! After a C-section and as relief washed over me, my husband happily declared “2 boys!” – our excellent team of 4 was complete!  I waited for the joy that was supposed to follow. Instead there was a heavy silence in the room and George was taken away to the special care unit. What seemed like hours later, a very small consultant in a white coat arrived with a giant black frying pan and whacked me round the head with it 10 times (as I remember it), and explained our baby may have Trisomy 21, otherwise known as down syndrome. We would have to wait for confirmation following a test in 5 days, his parting comments include, “fingers crossed we are wrong” and “don’t Google it”. Terrible advice on both counts as it turns out.  A nurse came to find us and diplomatically suggested we shouldn’t cling on to much hope, as George displayed too many of the indicators for them to be wrong. Google provided limited comfort but we did find a local support group and my sister spent hours trying to find celebrities with Down Syndrome in the family – her way of finding a link with the outside world as we had known it hours before. None of us had really had much contact with anyone with Downs, we couldn’t imagine what ‘these people’ were like. Whilst I wanted to be with my baby and hold him to make him feel safe, I was also absolutely furious and immediately hated him. Part of me very much wanted to leave him at the hospital, although I did feel a responsibility for him, it was not in a good way. George had a sticker on his tank “I am wearing my own clothes”. Big deal!  I thought – is this something to be proud of? Is this the best you can do? I was terrified and immediately assumed the worst, he was so tiny I didn’t think he’d ever be strong enough to fend for himself.

I was tired beyond words with a demanding 2 year old at home whom I adored, and who I felt deserved a higher standard for a brother. He shouldn’t have this to cope with! He didn’t ask for this, I didn’t need this! I didn’t deserve it and I couldn’t do it. I didn’t feel in any way equipped to care for a child with additional needs – I really wasn’t going to be able to cope. But it was too late – he was here.

This reaction puzzles me now as I struggle to pin point exactly what I was so afraid of, and how could I have reacted so unkindly towards my own child. Hormones?  I hope so – otherwise just plain evil?!  This way of thinking haunted me during the first few months of his life. Mostly I think it was this simple – the thought of so much work and effort it would take to look after him and help him to develop basic skills just freaked me out.

The first year or two of George’s life was hard but it wasn’t because of him, it was because of me. It wasn’t hard for him, it was hard for me. My reaction was probably fairly typical of someone who was more than a bit self-centred and was a shocked, arrogant person who thought she had amazing genes. My desire for a family was based around my own ego and what they would say about me – a tiny wonderful version of me – completion, a perfect creation.

As it turned out George was the easiest baby – he slept like a dream and couldn’t walk until he was 2 and a half which wasn’t so bad! We enjoyed an amazingly relaxing holiday in France because he basically sat and played all day. He didn’t, and still doesn’t have any major medical issues. The terrible traumas and difficulties just didn’t materialise and helping him to develop all those skills has actually been fun and incredibly rewarding.

Once I had managed to relax a little and get to know George – I fell in love with him as the shock diminished and I stopped feeling as though we were living in a parallel universe. He loves life, the simplest pleasures (being offered a biscuit) will make him throw his arms in the air and dance. Everything he does is impressive and admirable because he is at a slight disadvantage. He attracts a lot of attention because of the joy he presents everywhere he goes and as a result I think we are all better at talking to strangers. This can only be a good thing.

It makes me uncomfortable to admit that I may have not gone through with the pregnancy if we had pre-natal diagnosis, although I believe everyone should have the choice. But how can you make a choice between something you hope for and something you don’t realise you might need? Neither of these things ever prove to be what we think.

Our story about George really ends here and I realise it is dominated by those very early days. That’s simply because everything is okay now. We are a regular family, experiencing the same good days and bad days like everyone else. I realise how lucky I am to have my family as they are and that there are so many people dealing with actual terrible stuff that certainly isn’t Down Syndrome.

All the unhappiness and negativity that surrounded his diagnosis or ‘condition’ came from us . George is happy, he doesn’t ‘suffer’ from anything, most of the time he’s actually over the moon, and because he’s in the world so am I.