Our daughter has a rare chromosome disorder. Finding Sense was the best thing we did

A little girl sitting on grass. She's wearing a pink coat and red glasses.

Six-year-old Tilly is supported by Sense, and has a rare chromosome disorder causing poor vision, hearing loss and learning difficulties. Her mum, Louise, explains how Sense have supported Tilly and her family during lockdown. 

When Tilly was three months old, a paediatrician noticed she hadn’t reached some of her milestones. After running some tests, the hospital told us that she has a rare chromosome disorder, as well as having very poor vision. By the time Tilly was three years old, she was also diagnosed with some hearing loss.  

It was around this time that we started going to sessions at the Sense Woodside Family Centre. We were still taking Tilly to a baby sensory group and was looking for other groups for older children, where she could get the sensory stimulation she loved.  

I was quite nervous about reaching out and meeting other people, but honestly, it’s the best thing we did. I wish I’d gone before. Once I plucked up the courage to go to Sense Woodside we just haven’t looked back. 

Sense Woodside supported Tilly to develop 

When we first started going to Sense Woodside as a family, Tilly wasn’t able to participate in the sessions, and she loved lying on the floor and looking at the bright lights. But going to the sessions had such a positive impact on us as a family because we suddenly found ourselves with people who knew what we were going through.

It’s been amazing to work with the Sense team to develop Tilly’s communication. Before, she couldn’t communicate with us but Caitlin, a Sense Children and Family Support Worker, is supporting Tilly to learn to sign. 

Nowadays Tilly is very playful, she’s got such a bubbly, friendly personality. She likes throwing balls and watching them roll down things, anything with movement really. And she loves music. 

A little girl in a wheelchair sitting at a kitchen table watching a laptop. She has a smile on her face.

During the pandemic, we carried on taking part online 

When the first lockdown was announced last year, I was really worried. I just didn’t know how it would impact on us as a family, what the impact would be on Tilly and her health, and I was worried about feeling isolated.  

During the pandemic we’ve carried on taking part in Sense family sessions online. At first it was difficult for Tilly to engage with online sessions, but she soon became used to her new routine and now loves taking part in the songs. 

Nursey rhymes like Wheels on the Bus and Wind the Bobbin Up are two of her favourites. Each session the team sing a welcome song to each child, and Tilly gets very excited and uses the ‘T’ sign to introduce herself. 

We were also sent some craft kits at Christmas which were brilliant, as well as some sensory toys. It’s great to have something for Tilly to smell or touch to get all her senses involved. 

Sense has helped us to keep connected to other families during the pandemic. The team have supported Tilly to keep connected with her friends. Just knowing that the support is there and that we can join in at any point is so helpful. 

Donate to our spring appeal 

Children who are deafblind or have complex disabilities need Sense through each new chapter of their lives, and it’s your support that makes this possible. 

Toileting: Sue and James’ story

A hand on wood. Toileting: Sue and James' story.

James is 13 and loves life but really doesn’t care about using the toilet. Sound familiar? So many families say the same. If their child has complex needs and a multisensory impairment, how should they teach them the skills of toileting? With very little help, James’s mum Sue kept on going even when professionals told her to give up. It hasn’t been easy, but this summer, James made a breakthrough. Read Sue and James’ story and get some tips on toileting.

Continue reading “Toileting: Sue and James’ story”

“I had to get my point across that the Government has ‘fallen foul’ of its responsibilities”

A screenshot of the parliamentlive.tv website with a group of people having a meeting.

During my time at Sense I have had the opportunity to attend lots of events and meetings to represent my community and speak on behalf of other Deafblind people. None quite so nerve wracking as a live streamed, virtual, parliamentary committee meeting though!

Continue reading ““I had to get my point across that the Government has ‘fallen foul’ of its responsibilities””