How Sense’s support has opened up the world for Verity

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-verbal and she often has seizures. 

When she was born, Verity’s family struggled to know how to communicate and play with her. They turned to Sense for support. Here, Sense support worker Anne Cheesbrough explains how Sense has worked closely with Verity’s family to open up her world. 

I’ve spent a lot of time with Verity, and I’ve really seen her personality emerge over that time. She’s very thoughtful, and cheeky too!

She’ll get this look in her eye, that’s like she’s saying, “I know what you want me to do, but I’m not going to do it!” Sometimes she even feigns sleep if she doesn’t want to do something. 

Often, people underestimate her. But she understands an awful lot. 

It’s been a privilege getting to know her since she was a tiny baby. Now she’s four, and we’re supporting her to start going to school. She even recently came on her first Sense Holiday!

Sense was there for Verity and her mum right from the start

I can remember the very first time that Verity and her mum, Sarah, came to one of our online early years groups, for very small children with complex disabilities and their parents.  

Sarah was a bit overwhelmed at the time, with so many “what if”s and so much medical stuff.

Often when somebody has a baby with complex disabilities, what’s overlooked is the need to celebrate: you had a child! In our group, with the other parents, Sarah found a safe space where she could celebrate, and also talk about the things that were on her mind with people who understood.

Verity was doing amazingly, even at that early age. There were lots of little things she was doing independently, like visual tracking. 

You could already tell if she liked something or didn’t like something. 

I remember that shortly after that first session, I visited Sarah and Verity at home to drop off a resonance board and some other sensory toys for them to explore. Verity loves the resonance board, and still uses it now. 

It’s brilliant to see Verity’s progress

I still see Verity online weekly, because she comes to our after school club. 

Over time, she’s gotten used to the routine, which is great because children with multi-sensory impairments really learn through routine and repetition. 

You can tell that Verity knows the format now, and the routine has helped her build new skills. She knows that when everyone arrives, we sing hello. She listens, and you can tell that she responds when she hears her name. 

She especially loves when we play music. You can see that she becomes more alert. 

Her visual tracking and moving her head independently has really come a long way. 

She’s also far better about exploring her environment using her hands. Using a hand-under-hand approach has helped her to explore lots of things, without feeling scared. 

It’s brilliant to see her progress. 

She’s just started attending a specialist school, and soon I’ll be going there to help make sure the school understands her needs and can support her in the right way. 

Recently, she came along on her first Sense Holiday. That was really special. It’s a milestone for lots of children to go on a holiday without their parents – perhaps they might go on a school trip, or go away with their grandparents. 

For Verity it looks very different, because she needs a lot of support, but she should still get to have those opportunities like anyone else. 

Verity and her family also sometimes come along to Sense family days. Verity has three siblings, and the family days are all about making them all feel included!

Sense brings the family together at Christmas

All year round, the support that Sense provides is all about making sure that children with complex disabilities are included in everything. At Christmas, that’s even more important!

Society puts a lot of pressure on families to have a perfect Christmas, and do things that other families are doing. 

But for lots of the young people we work with, like Verity, things like going to the panto or ice skating aren’t always accessible. 

For Verity, it might be about having the opportunity to feel the crunch of tinsel and sweet wrappers. Or we might get her mixing spices in a bowl, so she can smell the cinnamon and nutmeg. 

These are the kinds of activities she might try at a Sense Christmas family day, while her seven-year-old brother, Joseph, can try his hand at baking some mince pies. This makes them both feel included in Christmas. 

The family days are great for Joseph, as well as Verity, because he gets to see other families where children his age have siblings with needs like Verity’s. And it gives him the opportunity to have fun while also learning some of the skills to actually work with his sister.

And that’s what Christmas is all about, isn’t it? Spending time with family!

We’re able to support Verity thanks to you

Every penny that’s sent into Sense makes a difference. Even the smallest amounts help us to support someone like Verity. 

It might be about buying small objects that we can use as objects of reference, for example. They might only be tiny things that cost £2 each – but for Verity, they open up the world. 

Objects that give Verity some sensory stimulation, like torches and space blankets, are also invaluable. They’re her toys. 

It might not seem like much, but over the time we’ve worked with Verity so far, we’ve already seen how far she’s come. 

I’ve worked for Sense for 33 years, and in that time I’ve seen people go from tiny newborn babies to adults moving into their own supported living home. It’s very precious and powerful to be with them on that journey. 

Fundamentally, it’s all about supporting someone to have a voice, and be independent. 

If there isn’t that money coming in, then we’re not able to support someone like Verity to explore and open up her world.