AIMING FOR EXCELLENT

Finding out her second child, Leo, now 18, had Down syndrome came as a huge shock for Lucy Morgan. “I had had routine tests in pregnancy, which showed there was a one in 2,500 chance of our baby having it, so it had never really even crossed my mind. When Leo was born, he was quite sleepy and spent a lot of time with his eyes closed so we couldn’t really see any of the typical features of Down syndrome in his face. It wasn’t until he was three weeks old – when we took him to A&E as he wasn’t feeding properly – that a consultant spotted it, did a test and delivered the diagnosis. I jumped straight to thinking how everything was going be different and wondering what would happen to him when I became old. It took a while for it to really sink in.”

After his diagnosis, Leo was given a variety of tests to check for health problems associated with Down syndrome. “We found out he had a hole in the heart, which would need regular monitoring over the years. This explained why he had always been so sleepy. We were also told he had a Morgagni hernia, which meant that some of his bowel was protruding into his lung. He had to have keyhole surgery at Great Ormond Street hospital at just eight months old to fix the hernia, which was quite major. Seeing my unconscious little baby being carried away was not a good moment and the surgery was very long and stressful. However, it was successful and fixed the hernia, which also helped with his feeding.”

In 2006, Lucy met someone at a Sure Start group for children with Down syndrome who had worked with an organisation doing research-based work into how children with Down syndrome learn. “She and another lady wanted to set up a charity that could use this research to help children with Down syndrome develop their life skills through the use of educational programmes, quality play and educational support for parents, carers and siblings, so the children could become equally participating members of society. They knew there was quality research there backed by evidence that wasn’t really being utilised but could significantly change lives.

“It was a small group and I guess they worked out I was a doer and had a legal background, so I was asked if I could help set it up properly and grow it. I knew it was an opportunity to help my own child and also I’m someone who’s interested in the voluntary sector and wanted to help other children as well. I saw there was a big need for the service, so I agreed.

“I did all the written stuff such as the charity commission registration, Gift Aid, website, policies and funding applications, and the other two trustees sorted the admin side of things like ringing the hard to-reach parents, finding us a location to host the groups and setting out the space, so were really running it on the ground. In 2007 – when Leo was one year old – we launched the charity Downright Excellent.

“From the start, we had speech and language therapists attending every group session, some occupational therapy, and we had stay and play sessions where parents could get together and talk, as that is always really useful for both the parents and children. We found it was really successful and something those who attended really came to value, and the charity continued to grow.”

Lucy helped the charity grow and develop for three years. “I was getting a bit burnt out at that point but wasn’t going to step away and let it all collapse, as I really believed in its work, so I found replacement trustees, an administrator and an accounts person and got some funding for core costs before I left my role. “Although I was no longer involved in running the charity, Leo and I continued to be service users and still are to this day.

Leo now attends the teenagers’ group every Saturday, where they practise conversation and communication and other life skills, and I have seen how important it has been for him. His speech and language are quite good now and I know they are a lot better than they would have been without the speech therapy and specialist teaching methods used during the group.”

The social interaction for parents facilitated by these sessions has also been hugely important to Lucy. “We all chat when we’re in the group, and when the children were little, we used to meet up at other times, too, so it’s quite a solid group and we have all known each other for years. It’s been a huge help to me, especially when Leo was little, to have that social aspect as parents, because you’re going through it with a group of people who are experiencing the same things and you get all your best information and advice usually from other parents.

As a parent of a child with Down syndrome, you have to spend so much time fighting the system to get what you need, which other people don’t always understand, so having other people in the same boat to chat to and give you support makes all the difference. It’s good to have friends who are parents of children a bit older than yours so you can see what’s ahead of you. It’s important to feel like you’re not out there on your own, as having a child with a disability or additional needs can sometimes be very isolating.

“It’s a journey you go on that you never expected you would, but it brings a lot of joy, happiness and positivity as well as challenges, and it’s given me insight and experiences I wouldn’t have otherwise had. Life as a parent of a child with Down syndrome can be more difficult but the challenges are not insurmountable, and Downright Excellent has helped me to get through those difficult times by surrounding me with a network of people experiencing it alongside me who I know I can always turn to for support. It’s been an absolute lifeline for both me and Leo and such an important part of our lives.”

THE CANDIS BIG GIVE AMOUNT RAISED: £10,095

• Downright Excellent empowers, inspires and supports children with Down syndrome.
• It is using the money raised in the Candis Big Give to offer life-changing early intervention and specialist teaching to nearly 100 children aged 0-18 in small groups.
• Each group session lasts for 45 minutes. The groups for children aged 0-5 are on a Friday and consist of four groups of four children. The children work on speech, social communication, fine motor skills, reading and number work. The older children’s groups are on Saturday and the children can be in anything from pairs up to about seven. These groups work on communication strategies and life skills, including going out into the community, stranger danger, using money and going to the shop.
• The charity will also work with schools and families to ensure shared knowledge of the children and strategies for learning and coping. It offers support for parents in things like education, healthcare and benefits, and training on the learning profile of Down syndrome, education and healthcare plans, preparing to go to school and to transition to a secondary school, sensory needs and education.
• Visit downrightexcellent.org to find out more.