Foundations for a full life

We can’t believe it’s been almost 20 years since we first met Elliot. His mum, Angela, reflects on how early support from Sense provided a foundation for Elliot to build a full and happy life. 

My son was diagnosed with CHARGE syndrome when he was a few years old. It’s a rare genetic condition that affects his sight, hearing and balance. We went through a lot of vision and hearing tests before getting to that stage.  

It was during one of Elliot’s appointments that someone first suggested that we get in touch with Sense – and actually, it was Sense who first discussed CHARGE with us before Elliot was diagnosed. 

After so many in-and-out hospital trips, it was such a relief to have someone come to us, to meet Elliot in our home. A woman called Bev came over from Sense, not just for an hour – she really gave her time, no rushing off or anything like that. She talked to us about multisensory impairments and Elliot’s condition. 

Bev’s expertise made such a massive difference and Sense has been in our lives ever since. 

a child sits on his dads lap, facing him and looking at his hands
Elliot when he was a small boy, playing with his dad.

Embracing life with CHARGE 

I remember taking Elliot to a Sense Centre for the first time on his very first birthday. We spent the whole day there and it was just so lovely – they were really relaxed days. Bev was there again, with two other specialists, and they took the whole day to assess Elliot and get to know him. 

It was such an encouraging experience. I left feeling uplifted, thinking of all the things which Elliot could do – rather than focusing on the problems.  

There’d been so much uncertainty in the first years of his life. He’d missed milestones in is development, like in his growth and movement. This was when our knowledge around CHARGE was still non-existent. 

I remember when he was very little, because he couldn’t crawl, he’d just lie on his back and propel himself along with his feet. Sense were able to say, “Oh yeah, we’ve seen these behaviours before. That’s really common.”  

That meant a lot to us. It helped me and his dad switch mindsets – we stopped being fearful and just embraced it. From there, we supported him to take his first steps and start holding himself upright, it was just incredible. 

Wrap around support  

In the first five years of Elliot’s life, Sense was really instrumental in helping us to help him. Bev was still working with us when Elliot first went to nursery and then on to school. She’d go in and guide the people that were working with him, advising them on how best to support him. 

There wasn’t a lot of experience or understanding of dual impairments, so it was amazing to suddenly feel sure that our son was getting the help he needed. That was the kind of wrap around support that Sense was able to give. 

After that, Sense helped us to identify and transition into a specialist school. It was an excellent placement. The staff were really experienced in working with children who have CHARGE. From there, it felt like Sense had supported us to a place where we didn’t need to rely on them, we had a network. 

two figures wearing big coats, laughing together in the snow
Angela and Elliot out together in the snow.

Moving in the right direction 

Looking back, it’s clear that Sense had a massive impact on our lives. I’m sure that reassurance they’ve provided our family has been key in enabling Elliot to be the man he is today.  

He has the skills and confidence to do the things he loves. He’s super outdoorsy. We live right on the edge of the Peak District and there’s nothing Elliot like more than getting out there. He’ll be out walking or riding his bike is all weather conditions – we’ve been out in snow! 

We’re in a good place now. Elliot’s at college, but soon we’ll start making decisions about what kind of supported living option would suit him. We’ll be taking advise from Sense on this for sure. It’s become natural for them to be part of these important steps in Elliot’s journey. 

Will you give to help another child like Elliot get the early years support that is so vital to their ongoing development? Visit our Spring Appeal to see how your gifts help us to do more.