Nicky supports children with complex disabilites at Sense's services. She explains how she's had to adapt the ways she provides support during the pandemic.
One of the children I support is five-year-old Zach, who has Yunis Varon, a syndrome which affects his skeleton and nervous system, including sight and hearing loss. Zach has a very gentle personality and it took me a while to find out what he enjoys doing. As I’ve got to know Zach, I’m now able to recognise how he shows his likes and dislikes through vocalizations and body gestures.
When I started running virtual sessions during lockdown, it felt very strange and we were unsure how effective it could be – I’m sure you can remember your first virtual quiz or video calling friends after restrictions were put in place – but we all got used to it, and having the routine was great for both the children and their parents.
Virtual screens won't totally replace face to face contact, but we sent out resources and specialist equipment to families at home, so children like Zach weren’t just looking at a screen for an hour.
This is where people like you, donating what they could to Sense, made all the difference.
Thanks to our donors, Sense could send packs to families containing musical instruments and sensory toys. Zach loves music, and I made sure he got a whole set of musical instruments for him to use at home during our sessions.
One instrument that Zach loves is the ocean drum, which is a drum with small beads inside it. So when you hit the drum you get both the bang of the drum and the vibration of the beads. He really enjoys lifting his hands up and dropping them back onto the drum to get maximum sensory feedback. Watching Zach’s smile as he independently made music was one of those wow moments for me.
It took a few sessions to work out the best place for the parents to put their cameras so we could see the children getting involved with the activities. But his mum, Jemma, had positioned the camera perfectly so we could see Zach’s body responses and vocalizations and could clearly see his enjoyment of this activity.
Zach’s not just a child with a set of needs, he’s a young person with likes and dislikes. Finding opportunities for him to express these preferences is really important and through the support of people like you I’ve been able to support Zach and his family in finding toys and equipment through which his personal choice can be expressed.
Noticing him make these simple but very direct choices is really important in giving Zach the voice that he’s unable to verbalise.
Virtual sessions wouldn’t be possible without Sense supporters
I’ve also sent Zach switch toys, which he absolutely loves. He’s able to activate the toy and get a sensation when he touches the switch. Lots of families were only able to use these toys at our family centres, so it was great to give families the option to use them at home.
These types of toys are amazing for Zach, as while he can’t visually see the effect he’s having on the toy, he’s having a real sensory experience.
Everything we do is utterly reliant on people continuing to support the work that Sense does. Thank you to all of our supporters. You have immeasurably improved the lives of the children we support – and their families – over lockdown.
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If your child could benefit from a session like the one described above, we offer free sessions for anyone with complex disabilities.
For more information about how we could help, contact our Information and Advice service.