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. 

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One year on since the UK’s first lockdown

Two young men sitting next to each other. One is talking whilst the other young man smiles.

This last year has been difficult for so many people around the world. The news has been dominated by coronavirus and it feels like the lockdowns have lasted a lifetime.

However, while the pandemic has raged on, there’s been moments of hope and joy. People have connected in ways that were unimaginable a year ago and we’ve supported each other to find those little moments of happiness.

At Sense, we’ve worked hard to make sure that we’re adapting the way in which we support people with complex disabilities and their families.

Friends reuniting after lockdown

There’s been numerous moments that have challenged us and, on quiet reflection, made us stronger.

After a year of lockdowns, we’d like to celebrate the reunion of two best friends, Asif and Ashton, who have formed a bubble together. Watch the video below to see them meeting again for the first time since lockdown.

Keeping connected during lockdown

Asif and Ashton’s families kept them connected during lockdown with video calls. Their familes have seen the positive impact their friendship has had on their wellbeing. Some of their family members share how happy they are that the friends have been reunited.

Lynn, Ashton’s mum, is pleased the friends can meet in person

“They’ve always been so lovely together. They’re just like two old men. We’ve tried to keep them connected during lockdown with video calls and Ashton would have his ear on my phone. Now Asif is back at Sense, Ashton is full of smiles.

The past year has been very hard. Ashton likes to be doing things. He likes to be out. We go to the park and he likes to throw the ball for the dog. He can’t walk long distances, so we’ll do a walk with the wheelchair. We take drinks and crisps, but he needs to see people.

He’s very tactile and loves hugging. There’s no social distancing with him. That’s been really hard.

We’re lucky that we had an allotment and things to amuse him here. He’s just a very friendly social lad and he does love his best friend.

I love it that Ashton and Asif are back together. I’m overjoyed and he’s just so happy. For me it’s lovely that he’s going somewhere nice and seeing his friends.”

Two young men sitting at a piano laughing.

Saima, Asif’s sister, can see how happy he is after lockdown

“For us, the past year we’ve been keeping it really basic. Asif just stayed at home most of the time. There were occasions where he did have Zoom catch ups with a few of his friends but it’s just not the same being in person.

He really misses that independence and that routine. It was a struggle. He really misses just being at Sense and that space where he can be expressive.

Now he’s back, he’s just extremely happy. We understand that he missed going to Sense and Ashton, but we didn’t appreciate to what extent.

When he first went, he came back so happy. When he attended, I remember picking him up and he was so happy to have seen Ashton. I remember seeing him just laughing. As a family, it makes us so happy to see him like this.

When we told him that he was going to get the vaccine, Asif put two and two together and he knew that he’d go back to Sense.

Asif is just a happy young guy. For the family, we’re just so grateful and indebted to Sense for keeping in contact with him.’

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Ensuring nobody is left out of life #CommunitiesCan

Two women on a Zoom call. Sense Connect was set up to ensure no one was left out of life during lockdown.

Lockdown showed us how lonely life can be when the people and places we love are taken away. But, what if life was already lonely before the isolation of the pandemic?  Sadly, that’s the case for thousands of disabled people in the UK. A study by Sense, before the pandemic, revealed that one in two disabled people (53%) feel lonely every day, rising to 77% for young disabled people. And lockdown has only made things worse.

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Friendship trumps lockdown

Two young men talking. Friendship trumps lockdown.

We knew that Coronavirus, and the ways it has restricted all our lives, would also have a major impact on the people we support at Sense. It would be difficult for some of the people we support to understand why they were no longer able to see their friends, attend their usual centres, or go about life in their usual way.

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Rathin and Ryan – Buddying

Freesia and Rathin on a Zoom call.
Rathin and Freesia on Zoom call

Rathin who is 19 was referred by his mother, Roshan, who approached Sense via the Information and Advice service. Rathin had been expressing to his mum that he had been feeling lonely and wanted to connect with people his age and pursue his interests. The Buddying Team met with Rathin at college and he spoke at length about things he enjoyed; specifically busses, travel, cinema but, most importantly, his desire to make some friends outside of his family. Rathin absolutely above all, enjoyed chatting and was hoping to meet someone to support him in navigating teenage anxiety, explore options for his future career, move into adulthood and meet some new people.

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We’re in this together

Two girls hugging with smiles

Throughout the lockdown, we have all been finding new and interesting ways to connect with one another. Social interaction has been incredibly important for everyone’s mental health, wellbeing and sense of connection. Across the country, the people we support have been finding amazing ways to stay in each other’s lives and supporting each other when loneliness starts setting in.

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