William’s Down’s syndrome story: “We feel so lucky we discovered The Brain Changer Arts Project during the COVID-19 lockdowns”
William, 17, was diagnosed with Down’s syndrome shortly after birth. This means the teenager, from Surrey, has low muscle tone, poor fine motor control and coordination, severe learning disabilities and is non-verbal.
Before the pandemic, William had been enrolled in full-time education at a special needs school.
But when the UK went into lockdown in March 2020, all that changed and his parents, Chris and Helen, had to try and pick up providing this vital education from home.
Chris said: “During covid, everything stopped abruptly.
“William needs one-to-one support and while his teachers were doing what they could, they couldn’t be there.
“He didn’t have many years left of education, these were vital years and time that he couldn’t get back, and we were worried he was going backwards.”
When Helen was searching for options, she discovered The Brain Changer Arts Project.
During the pandemic, they ran as online video sessions and were open to young people from anywhere in the UK.
As the workshops went on, William began to look forward to taking part in the sessions.
Chris said: “The sessions gave William a chance to keep practicing his fine motor skills, using scissors and drawing and painting with different techniques we wouldn’t have come up with, like using cotton buds to dab the paint on.
“The regular workshops helped him maintain a good level, he was using his skills so he didn’t forget them.”
Chris also said the impact of having a regular activity in the diary for William was huge.
The sessions helped give them new ideas as parents for activities they could do with William while he was off school.
He said: “There was an absolutely huge emotional impact. We could get him back into a routine, which is vital for Down’s syndrome.
“In the mornings, he was up and doing something. It was really good to have that structure to the day, which we were missing.
“We’re so grateful The Brain Changer Arts Project was opened to the whole of the UK via Zoom during the pandemic, so we could take part despite not being based in Merseyside.
“There was nothing for us locally, so we feel very lucky we discovered the programme during lockdown.”
Category: Help for children
Published: 11 May 2022