Our whole family can enjoy Christmas together thanks to Sense
The star of our Christmas appeal this year is Verity. She’s four, and has been supported by Sense since she was a newborn. She has a rare genetic condition called CDKL5, which means she has limited control over her body, so she uses a wheelchair, and she’s visually impaired. She’s also non-speaking, and she often has seizures.
Here, Verity’s mum Sarah explains how support from Sense has helped them embrace Christmas all together as a family.
This Christmas, I’m looking forward to celebrating with my four-year-old daughter Verity, in her own unique way.
Although she doesn’t speak, Verity can be very expressive and happy. When she’s surrounded by people, doing a fun activity, she gets a twinkle in her eye.
She’s very sensory-based, so she loves sounds like bells, bright lights, any kind of noise. She’s definitely a music lover, which helps her to connect with her dad, who plays guitar.
So Christmas in our household is all about lights, music and smells. Thanks to specialist support from Sense, we’ve figured out how to make Christmas as special for Verity as it is for the rest of the family.
Having a child with complex disabilities is a journey, and I feel like Sense is by our side, taking that journey with us.
Verity feels Christmas a bit differently to my other children
Christmas can be a lovely time for Verity, because she loves bright lights and music, and that’s what Christmas is all about! And it’s a time for people to come together, and she loves being around people.
But it’s been hard, sometimes, to know how to make her feel included in the festivities. My other three children will get excited about opening presents, and they’ll tell Santa what they want – but it’s different for Verity.
When you have a child with complex needs like Verity’s, you can worry that they are going to miss out on these things.
But Sense has helped me realise that she doesn’t need to miss out. When it comes to Verity’s Christmas, it’s just a different way of doing things.
Sense have helped us discover ways to make Christmas special for Verity
Taking part in sensory stories has helped me to see that even the simplest things can be a fun experience for Verity.
For example, the beads that we’d normally hang on the Christmas tree – they make a great sound when you move them around, especially if we put them on Verity’s resonance board. Verity really reacts to the vibrations, with life and joy in her eyes.
And she loves putting her hands into a tub full of empty sweet wrappers to feel them scrunch. We always have a lot of those around at Christmas!
Sense also gave us a pack of sensory items for Christmas that were lovely. That included some scented pine cones, with really potent, Christmassy smells.
We like to have those around at Christmas, and scented candles, and Verity really responds to those. She can get excited by the smell of mince pies baking, or cinnamon sticks.
Sense Christmas family days bring the whole family together
Sense’s Christmas family days are lovely because they have lots of different activities that make everyone feel included.
At the last one we went to, there were carol singers (with BSL interpreters) and people playing instruments, so there was lots of stimulation in terms of noise! There was a circus act performing, too.
What’s nice about those sort of events is that even though Verity might not necessarily be engaged completely in every activity, her siblings can take part too.
There was a lovely Santa’s grotto, where all the children got to meet Santa. Verity was given a lovely gift that was a special sensory toy. It’s like a spinning light-up windmill.
Getting appropriate gifts for Verity is something we often find hard as a family.
With my other children, there’s always something they want. But for Verity, a lot more thought has to go into it. There’s not many cheap and cheerful things she would get much enjoyment from.
So it meant a lot to get a special gift from Santa that she could actually enjoy.
And it means a lot to Verity’s siblings that they get to have a fun day out with her, too. Her brother Joseph and her sisters Sofia and Sienna also got to meet Santa, and get gifts that they loved.
Sense has made all the difference to our family
Having this support from Sense has helped us to make fun things accessible for Verity at Christmas and all year round. It makes all the difference.
Sense has taught me that it’s all about enjoying the little moments with Verity. It can be the simplest thing, and she’ll get so much joy out of it.
It could even just be playing with a light-up toy, or feeling the texture of a feather. But it’s a special moment.
That’s what Sense has done for us as a family, it’s given us the tools to be able to open up the world for Verity.
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Every child should feel included at this very special time of year. Please give what you can.