Sense found a way of communicating with Thomas that’s as unique as he is
The star of our Christmas appeal this year is Thomas. He’s seven, and has been supported by Sense since he was two. Thomas has CHARGE syndrome. He’s completely deaf, and he has a form of visual impairment called coloboma, but the vision he has, he uses really well. He also has low muscle tone, so he sometimes uses a wheelchair or walker.
Thomas’s specialist support worker Alex explains how Sense has supported Thomas as he’s become the confident and curious boy he is today.
Children like Thomas, who are deafblind or have complex disabilities, need support that’s as unique as they are. We’ve been working with Thomas and his whole family to provide that tailored support since 2018, when he was around two.
Thomas’s family got in touch when they heard about some of our events in their area. First of all, we paid a visit to Thomas at home, to find out more about him and what kind of support he needed. We found that he was an extremely fun, easy-going and laid-back little boy!
Right from the beginning, Thomas’s family have been invited to Sense’s Family Days, and they love getting stuck into the activities. So that’s one of the main ways we’ve supported Thomas.
We also offered advice and support to the staff at his nursery, and he now has special support from Sense in school, too.
It’s all about adapting communication to fit each child
Thomas was diagnosed with CHARGE as a baby, but that doesn’t mean the same thing for every child. CHARGE syndrome is like a spectrum, and people experience it differently.
So one of the first things we did with Thomas was create an “identification report”, which goes into more detail about his specific needs. This informed his education, health and care plan.
We observed Thomas to figure out what kind of communication would work for him. For every child with multi-sensory impairments, it’s different.
It’s all about adapting and combining different tools to fit each child. There’s no one rule that fits every child.
When we first met Thomas as a toddler, we immediately began exploring what communication tools could be helpful for him.
Today, Thomas has come on leaps and bounds in his communication. He’s in the early stages of learning to use sign-supported English, which borrows some BSL signs but without using BSL grammatical rules.
He mostly uses touch and gestures to communicate. And he can make it very clear when he doesn’t want to do something!
He has also started trying to use a Picture Exchange Communication System (PECS), which is a way of communicating using picture cards. We’re gradually encouraging him to try out lots of different tools.
It’s lovely to see Thomas grow in confidence
Recently Thomas had a big breakthrough when we took him to a snow sports centre. He had been there once before, for a Sense event a couple of years ago.
Will you donate today to give children like Thomas the support they need to live life to the full?
Immediately, he showed signs that he remembered where he was. He knew where to go, and didn’t wait for anyone to take him. Because of his mobility and communication challenges, showing such confidence was a big breakthrough for him! It was lovely to see.
Physically, he’s getting a lot quicker in general. When he has his walker, he’s a speed demon – we were struggling to catch up to him on a recent Family Day. And that was before he got into a go-kart!
Thomas is always happy to try new things. At our last Christmas Family Day, it was a joy to do some baking with him. He was getting really messy making sticky chocolate buns.
He also loves animals, because he loves exploring things through touch. So feeling the different textures of animals makes him happy.
At Sense Family Days, it’s a safe environment for him to try new things, and he gets to be with his family, too. It’s made such a difference. From when we first met him to now, he’s become such a confident (and cheeky!) little boy.
Help us support children like Thomas to experience the world
Your Christmas donation to Sense goes towards children like Thomas and their families having those special moments.
With the cost of living crisis, this coming Christmas is a tough one for families with disabled children. Sense Christmas Family Days give them some time away from the stresses of everyday life. It also helps connect them with other families and professionals that understand them.
Your donation also helps us to keep supporting children like Thomas to develop their communication skills, and thrive at school.
It could also go towards providing wonderful activities, or specific toys that help with Thomas’s development.
At Christmas time, it’s so special for a child like Thomas to be able to open a present just like his peers, and find inside something that’s just right for him.
Christmas time is all about families, and your loved ones. When you donate to Sense, you give families those opportunities to access activities, support and communication during the festive period, and all year round.
Help support a child like Thomas
Thanks to donations from people like you, we were able to support Thomas through nursery, and we’ll keep supporting him and his family as he grows up.
Now, will you give so we can support another child with multi-sensory impairments to achieve whatever they want to achieve?