Daisy and Carole
Carole said: “Daisy has improved so much since starting at the Mencap Centre. She tries really hard and never gives up easily. She did not speak at all before coming to Mencap, she would not even try, she just nodded and agreed with whatever you said. Where as now she tries to repeat everything she hears. She has learned lots of sign language and is brilliant at Makaton, the learning disability sign language, which helps her communicate so much. Her confidence and communication skills have improved, she loves adults and mixes better with other children, whereas before she would have just shied away from people, she has so much confidence now.
When Daisy was born I thought she was my responsibility and that I had to do everything for her. But you have to learn that there are people you can trust and who will you, people who can bring her on as much as me. I did not want to get involved in any groups, I thought I did not need to look for support, I saw it as my responsibility alone to look after Daisy. But when Daisy started at the nursery I realised there are so many people that can help bring her on, it does not have to be just me all the time. I learnt to let go and realised there is support out there and so much more you can do.
I did not know when I was pregnant that Daisy had Downs Syndrome, but the minute I saw her I knew straight away, before the doctor had even mentioned it. For me that was the best way for it to happen, as I am a worrier and if I had known in advance then I would have worried about it the whole time. But when she was born she was my baby before she had Downs Syndrome, for a long time when I said that people used to think I was in denial about it, but I was honestly ok. She was my baby and then everything else came after that, and we just decided to take it day by day.
When I can home from hospital there was no support. Daisy was born on a Saturday morning and by the Saturday evening we were told ‘We think she may have Downs Syndrome’ and as she was feeding properly we went home on the Sunday. Returning on the Monday to get blood tests done and then we got a phone call on the Thursday confirming that she had downs syndrome and to keep doing what we are doing and they would be in touch in three months. And that was it, not a leaflet, no advice, nothing. So apart from a 3 month follow up medical check that was it. No support from social services or nothing else really.
The Doctor who gave the diagnosis was lovely, but it was obviously her first time telling someone about a downs syndrome diagnosis, as she cried as well. You have a picture of your child doing everyday things, I did not really know what it meant ‘Downs Syndrome’, I knew what it looked like but not what it really meant, it was the unknown that was difficult. Even to be advised and told that your child is going to need a range of extra help, support and that there are people out there who will help you do that, would make a big difference, but to be told nothing was very difficult.
When Daisy was six months the paediatrician told us about the Mencap Nursery and helped to get her referred to Mencap, so we were very fortunate that the application process went very smoothly and she was offered a place.
The biggest change Mencap has made is to see Daisy treated as a child and not as anything different. I can let go and be comfortable to leave her there and not to worry for those few hours, it makes such a difference. Daisy has come on massively since she came to Mencap, her feeding is better, she is physically more steady on her feet with all the games she plays, she is so much more confident, week by week she seems to take these massive jumps. She has developed so much more than any of the medical professionals ever said she would and that has been because of Mencap and the work they do, its been brilliant and a huge support to our whole family.”
For more information on the work that Mencap do follow the link below;