How Sense showed us that festive fun was possible for our whole family

This year, the star of our Christmas appeal is Thomas. His journey with Sense has been filled with merriment, especially on our Christmas Family Days. We catch up with his mum, Caroline, to look back on their first Sense Christmas.

When you have a child with a disability, it’s very hard to find common ground with parents of non-disabled children. They feel like part of another world. That was our experience in the early years, it was hard to find a place for us to belong.

Thomas was diagnosed with CHARGE syndrome in the first weeks of his life. It’s a rare genetic condition and no two children will have the same set of features. But for Thomas, he’s deaf and has sensory impairments, a heart condition and low muscle tone.

We tried taking him to a few mainstream playgroups and nurseries, to give him opportunities to play and learn with other children. But they didn’t really understand his needs.

We were still trying to understand how these everyday things were going to work for Thomas – Christmas was another level of uncertainty.

We stopped thinking Christmas parties could work for our family

Obviously, we wanted to give Thomas the same Christmas experience as his siblings, Jack and Emily. One of the mainstream nurseries put on a Christmas party, so we took Thomas to that. It was good but there wasn’t really anything there for Thomas.

At that time, he wasn’t able to eat the solid foods and he couldn’t join in games like musical statues – he can’t hear the music for one thing, so he didn’t know what was going on.

Even Father Christmas, they did their best, but it was hard for Thomas to understand it all. Underneath the beard, Thomas couldn’t see Santa’s smile or hear his “ho ho ho”, and there was no chance of Santa knowing sign language.

It left us feeling a bit sad. We stopped thinking we’d find anything that would work for our family.  

Sense gave us the gift of inclusion

The first Sense Family Day Christmas event we were invited to was at Sense TouchBase Pears. I was nervous because I didn’t know what would be there or what meeting the other parents would be like. But a lady from Sense took me by the hand and introduced me to all these families. I learned so much about what Thomas’s future could be like – I had never imagined he could go sledging! (When we tried it, Thomas loved it, he belly laughed the whole time.)

The party was so well thought out, loads for the kids to do – for Thomas’s siblings too. There’s no pressure or expectations on the day, everyone can do as they feel. There’s chill out spaces and no one minds if your child is throwing ingredients across the floor!

Last year, he got a light up tambourine from Santa. It was a perfect gift! The staff know he likes to mess around with cause and effect, so it was really tailored to Thomas. Compare that to the mainstream nursery school gift, which was a complex jigsaw puzzle.

We never looked back. Sense Christmas Family Days are a big part of our year now. Even during the pandemic, they were brilliant.

They put on an interactive party and posted us this humungous box of Christmas props. We got jingle bells for the children, sensory activities, card making crafts… it was a real box of cheer. It really helps for us because, for Thomas, music and tangible things are key ways for him to engage. We felt really thought of and included.

Want to know if you and your child could take part in a Sense Family Day? Please get in touch with our friendly team.