Sensory stories helped our family start a new chapter

Four-year-old Verity has a condition called CDKL5 – a rare genetic disorder. Her mum, Sarah, didn’t know how the family were going to connect with Verity and include her in family life. Now they have the answers. 

Verity has a real twinkle in her eye, you can tell that there’s a lot of life and joy in her. She has limited control over her body, but she communicates a lot with her facial expressions. That’s where her cheeky streak shines through. 

Initially, the challenges with communication were a big thing for us. We were always determined that Verity shouldn’t be left out of life, but we didn’t always know how to interact with and include her. 

Now though, I feel very confident. We don’t see Verity’s disability as a barrier anymore. Sense has helped us smash through that.

Finding our connection

We started doing virtual sensory stories with Sense during Covid-19 times. Using the songs, stories and props was a really nice way to connect. Those sessions showed us that Verity is very sensory; she loves bright lights, sounds and music.

Another big thing for us was trying to do activities that built up my son’s relationship with Verity. The activities Sense suggested were ones Joseph could join in with, and he’s so appreciative of that. I think he used to struggle to know how to interact with her, but their relationship has really improved.

One of the things we love doing all together is coming to the Sense Family Days, especially the Christmas ones. Often, festive events and things aren’t really set up for Verity – she can’t hear the jingling bells or see the Christmas lights.

But now we know there’s so many other ways to get into the festive spirit, from the smell of pinecones, to crinkling wrappers and using the resonance board Sense bought us to amplify different sounds.

Learning how to be apart

Verity’s going on her first holiday with Sense this year. Joseph has been asking us “How can you leave Verity?” But now he’s relaxing and starting to understand that it means we can have some special time with him. 

It can be really hard for us all to go out because Verity’s a full-time wheelchair user and she needs her medication. Our days out take a lot of planning. 

When she goes on her Sense Holiday, I won’t have to worry. I can spend time with my other children without getting sidetracked. 

Sense has given us those tools to open the world up to Verity, and to be there for all my children. Now we’re just enjoying life and looking forward to time together as a family.