I’ll never forget my son’s first steps
Ernie is one of this year’s Run For champions. If you’re taking part in our fundraising challenge, you might get to know Ernie as he cheers you on! His mum Helen shares the story of his first steps —taken at Sense—to inspire you.
Ernie is ten years old. He has Down syndrome and that’s affected his vision and hearing. He was diagnosed quite early on and so we started going to support groups when the boys were about six months old. Oh, that’s right – Ernie is a twin! He and his brother, Ted, are really close, they have a special bond.
Our local Sense Centre, Woodside, became like a second home for all of us. The boys love to do things together, even though this isn’t always possible because they’re developing at different paces. But the fact that Sense could accommodate them both was wonderful.
Building the strength to communicate
As well as having blurred sight and only a little hearing, Ernie has low muscle tone. You can imagine how this affects big movements, like learning to walk, but it also makes it more difficult for him to communicate.
When we went to our first Sense group, Ted could chat away to anyone, but when Ernie was trying to say something only Ted could understand what he meant. You could tell it was frustrating for him, to not be able to make himself understood.
With Sense, they had all these ideas for exercises that would help Ernie’s muscles develop. There were things that I just wouldn’t have thought to try. We’ve had a fantastic support worker, Helen, but I also remember the volunteers being just amazing. A lot of them used to work in schools before retiring, so they’ve got years of experience.
With their support, Ernie said his first word – it was “Ted”.
Standing tall for the first time
Sense were also very aware of Ernie’s physical development. Helen explained how lots of children with Down syndrome are very floppy – like super flexible.
Ernie was always full of energy, moving constantly and crawling. Then, when he started to feel more confident, he showed an interest in pulling himself up. Sense seemed to know just the right thing to help.
They’d been by his side for so long that they knew how to make him feel supported and confident. It was really important that Ernie had the right ankle support. Helen got hold of a pair of Piedro boots, which are slightly heavier and can give a steadier balance.
Ernie put them on and, for the first time, stood up. We were at Woodside when it happened. It was really emotional. He was loving it.
When something big like that happens at the centre, there’s sometimes a show and tell. I remember being sat in a circle with other families, with Ernie in the middle, and he stood up in front of everyone. Everyone wanted to celebrate him, other mums were welling up – it was a very sweet and special moment.