Parent Help

Sharing experiences is often a great way to help 'new parents' of a child with Down's syndrome. Below some of our members have shared their experience / story. If you would like to share your story to help others, please email louise@21andco.org.uk


George's Story

My story – Tatty

When I was pregnant with George I was 39. I already had a little girl – Izzy, who was 3 years old and this pregnancy was our much wanted second child. We had taken over a year to conceive so we decided not to undergo any invasive tests so as not to risk our baby’s safety. The chance we were given for having a child with Down’s syndrome was 1:1000.

I have no idea why, but while I was pregnant I cut out 2 articles on Down’s syndrome and even asked about it in a web chat room. A lady replied to my message telling me all about her beautiful daughter... a lovely e-mail full of love and acceptance. Sometimes I wish I could find her and tell her that we did have a baby with Down’s syndrome after all.

George was born by planned caesarean on 8th April 2004. As they handed him to me I wanted to look at him and have my niggling worries quashed. I saw his little face and tiny ears that were slightly curved over – a possible sign of DS. I did not feel that flood of relief and inside I felt something was wrong. He was quite blue from not getting enough oxygen in his system so the doctors took him away for a few minutes and I felt so tense. Mark, my husband, kept an eye on what they were doing and soon our little boy was back in my arms. All seemed fine.

I began to think all my worries were unfounded. We had a son – George – and we were ecstatic... for an hour. Soon two young doctors approached us and asked to look at George. They then asked us if we had considered that he may have Down’s syndrome. Mark took my hand. Reality hit and the fairytale ended. There were then more doctors and when I was moved to a room on my own away from all the other mothers I knew things were serious. Because it was Easter, the labs were shut so they could not confirm George’s diagnosis. This waiting time was the hardest part for Mark and I. We had to pretend nothing was wrong and that we were over the moon, as we didn’t want to tell too many people what we feared, in case we worried them over nothing.

Eventually we returned to the hospital for the results and a kind doctor told us the news. We cried and hugged and cried some more. If I could change anything it would be that this doctor could have been more positive about the future and not treated us as though a huge tragedy had befallen us.

The next few weeks were a bit of a blur. I felt as if I was in a black hole - very sad and I cried a lot. The best thing was that when we told family and friends their reactions were caring and positive, sometimes unexpectedly so, which was exactly what we needed. Mark seemed to accept what had happened faster than I did. His philosophy was that since he couldn’t change anything he might as well get on with it. He was very strong and level-headed and a rock during a very emotional period.

George was a sweet little baby who gurgled and smiled and ate and slept just like any other baby. I spoke to the Down’s Syndrome Association, joined The Downs Syndrome Educational Trust and met up with a couple of mums with older children with Down’s syndrome. My worries had not gone away but I was beginning to find people who could help me deal with them.

When George was about 3 months old I found 21&Co. I remember Sue – our previous chair, giving a coffee morning just for me, as it was summer time and they had none planned. Finding 21&co was a real turning point. I met many new people and eventually some mums with children of the same age as mine. Friendships began to form that to this day are exceptionally important to me.

As time went on I learnt a lot about Down’s syndrome, about my priorities in life and about how to love a child who was different from the one you had imagined. I realised I loved George fiercely and having a child with Down’s syndrome had just become our version of normal. I read many articles and books and trained to be able to teach speech therapy to pre school children with Down’s syndrome. I suddenly found myself helping new mums and dads who were at a stage I had been at just a couple of years before. In 2006 I became a trustee of 21&Co.

When George was 3 and being assessed for his mainstream reception class we were hit by another tornedo. He was diagnosed with Autism as well as Down’s. This dual diagnosis was a blow to Mark and me and we cried all over again. In truth I had noticed George was different from his peers who just had Down’s but I couldn’t put my finger on it. The diagnosis made complete sense and as always Mark was the voice of reason. Now that George had dual diagnosis he could receive the correct help to give him the best chances to succeed at school and in life. So off we went again on a slightly different journey!

And here we are today. George attends special school and we really are a regular happy family who just get on with whatever life throws at us. George and Izzy are happy young people, who love each other and Izzy is a wonderful sister, patient, kind and accepting. Mark and I do think about George’s future but we have no control over what hasn’t happened yet so we try to keep things in perspective. Sure we have our worries and our difficulties... but then again - who doesn’t! Our joys outweigh those challenges and we have become stronger for it.