{"id":16958,"date":"2022-12-01T11:25:07","date_gmt":"2022-12-01T11:25:07","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=16958"},"modified":"2023-04-20T09:50:16","modified_gmt":"2023-04-20T08:50:16","slug":"sense-showed-festive-fun-was-possible","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/sense-showed-festive-fun-was-possible\/","title":{"rendered":"How Sense showed us that festive fun was possible for our whole family"},"content":{"rendered":"\n

This year, the star of our Christmas appeal<\/a> 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.<\/p>\n\n\n\n

When you have a child with a disability, it\u2019s 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<\/a>, it was hard to find a place for us to belong.<\/p>\n\n\n\n

Thomas was diagnosed with CHARGE syndrome<\/a> in the first weeks of his life. It\u2019s a rare genetic condition and no two children will have the same set of features. But for Thomas, he\u2019s deaf and has sensory impairments, a heart condition and low muscle tone.<\/p>\n\n\n\n

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\u2019t really understand his needs.<\/p>\n\n\n\n

We were still trying to understand how these everyday things were going to work for Thomas \u2013 Christmas was another level of uncertainty.<\/p>\n\n\n\n

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Thomas sits between his parents, Anthony and Caroline, trying out some festive accessories!<\/figcaption><\/figure>\n\n\n\n

We stopped thinking Christmas parties could work for our family<\/strong><\/h2>\n\n\n\n

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\u2019t really anything there for Thomas.<\/p>\n\n\n\n

At that time, he wasn\u2019t able to eat the solid foods and he couldn\u2019t join in games like musical statues \u2013 he can\u2019t hear the music for one thing, so he didn\u2019t know what was going on.<\/p>\n\n\n\n

Even Father Christmas, they did their best, but it was hard for Thomas to understand it all. Underneath the beard, Thomas couldn\u2019t see Santa\u2019s smile or hear his \u201cho ho ho\u201d, and there was no chance of Santa knowing sign language.<\/p>\n\n\n\n

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Will you donate today to give families like Caroline’s the chance to experience a Christmas that’s tailored to their needs?<\/p>\n\n\n\n

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Donate<\/a><\/div>\n<\/div>\n\n<\/div>\n <\/div>\n\n\n\n\n

It left us feeling a bit sad. We stopped thinking we\u2019d find anything that would work for our family.  <\/p>\n\n\n\n

Sense gave us the gift of inclusion<\/strong><\/h2>\n\n\n\n

The first Sense Family Day Christmas<\/a> event we were invited to was at Sense TouchBase Pears. I was nervous because I didn\u2019t 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\u2019s future could be like \u2013 I had never imagined he could go sledging! (When we tried it, Thomas loved it, he belly laughed the whole time.)<\/p>\n\n\n\n

The party was so well thought out, loads for the kids to do \u2013 for Thomas\u2019s siblings too. There\u2019s no pressure or expectations on the day, everyone can do as they feel. There\u2019s chill out spaces and no one minds if your child is throwing ingredients across the floor!<\/p>\n\n\n\n

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