My Sonny has soared through your support

Hey there, my name is Julie Steward. I am a mother to my son, Sonny, who is eight years old and full of cheek, cheer, and an unrelenting love for life.

He is a regular at Sense events and activities such as their Family Days, yoga sessions, or his new favourite, the resonance board group, which turns sound into vibrations he can feel. All of that support is adding up to a little boy who loves to learn!

Finding Sense

When Sonny was first born, he had quite a lot of medical complications. He was in and out of hospitals due to a weak heart, and we had been notified that his eyes hadn’t developed as they should; he had also failed his newborn hearing test.

That’s all the information we had at that point. We hadn’t received any support for vision or hearing because, ultimately, we needed to get Sonny to be able to manage his own heart rate by himself, without intervention. It wasn’t until he was around 18 months old, when his heart was better, that we could start looking for support.

That’s when it became very apparent that there really wasn’t any support for Sonny from a multi-sensory impairment point of view.

Julie’s reaction after researching support for her deafblind child

I remember Sonny had just had an operation, and I was sitting there beside him, and I just thought, now what? What else can we do? We’ve got this little boy here, who we’ve been told can’t see well, can’t hear well. How am I supposed to help him connect with the world?

I remember Googling and that’s when the Sense website came up.

I knew that Sonny had a hearing and vision impairment, but I wasn’t brave enough to acknowledge it. I didn’t want to speak to anybody, so I just filled out the helpline on the Sense website. I remember emailing and sending it off to Sense. I received a reply a few days later saying that Sense could help, and that they were currently trying to link me with a MSI teacher.

At that time, we didn’t know what an MSI teacher was. We were a bit nervous. Up to this point, everyone who had been involved with Sonny had always been focused on his limitations. Everyone was always quite keen to highlight all the things that Sonny would never be able to do. So, the thought of then introducing someone else into our home made us feel nervous.

But it was a completely different feeling when our MSI teacher arrived. She came in, and was a breath of fresh air because it was somebody who was actually highlighting all the really positive, lovely things that Sonny could do.

Julie after meeting our specialist teachers from our children and young people service

It was probably one of the first times we’d had anybody sitting, listening and actually pointing out the things that Sonny was able to do. She showed us that he was tracking lights and he was exploring textures. It was the first time that somebody had actually pointed out that he was doing those things and said, let’s play more with the things that we know that he can do and build those strengths.

Then we discovered that Sense has family centres and we started building friendships with other families who were on a similar journey.

Our support

The Sense team are really good at explaining, demonstrating and giving you ideas on how you can adapt activities so that your child gets the most out of it.

For instance, Sonny absolutely adores absolutely anything messy. He’s a typical little boy. The gooier, the stickier, the better. The Sense team are always really aware that to get Sonny’s engagement in an activity, they need to have something that’s going to be a bit gooey, a bit sticky, to pique his interest.

Sonny is more comfortable, feet first, than hands, and it tends to be because he uses his hands for signing. If his hands are sticky and his hands don’t feel great, then he’s lost his way of communicating. He’ll always go in with his feet first, because then he’s still got his hands to be able to sign that something’s good, or if he’s not enjoying it.

The Sense team has shown us ways that we can support Sonny’s interest in various sorts of activities, by allowing him to use his feet first to build confidence with what he is feeling and then to offer it to his hands. It’s been really important having a team of professionals with extensive knowledge who can explain things like that’s the reason why your son’s using his feet first.

Virtual sessions

We live in Suffolk, so we are about two hours’ drive away from our closest Sense centre in Barnet. We are delighted that Sense offers a virtual online programme.

Through virtual sessions at Sense, Sonny enjoys yoga sessions, sensology (sensory education) sessions and resonance board sessions. He also attends nature detectives as well. He has a really well-rounded, lovely array of wonderful activities. Everyone knows and loves Sonny.

Sonny absolutely adores resonance board sessions because it’s run by Anne, whom he absolutely idolises. One summer, we went to a pony therapy day at TouchBase Pears, and Anne was there. Sonny absolutely adores ponies, so now any time he sees Anne, he has to remind her how much fun he had at the pony therapy day by showing her pictures from the sensory story I made.  Now every time he sees Anne online, he’s showing her these pictures of the ponies and subtly hinting, “When are we doing this again?”

Family Days

Family days are so special because they give Sonny the chance to try a huge variety of activities in a safe and supportive environment.

With Sense there to help, he can join in, have fun, and build confidence, while we are meeting other families on a similar journey.

Julie explaining the many benefits of attending a Sense Family Day

One special moment was our recent visit to the dinosaur park in the summer. Sonny was completely focused on the model dinosaurs. Because their movements were slow, he was able to watch them carefully and enjoy the experience, unlike at the zoo, where animals often scurry away.

The models stayed in place, giving Sonny time to observe closely. He even used sign language to tell us that he wanted to see them again – a lovely moment where he was able to make his own choice and communicate what he wanted to do.

Milestones and communication

Within the last two years, Sonny’s started signing. He’s always gestured, but it’s been in the last sort of two years that he’s really understood that if he makes shapes with his hands, he gets something.

Sonny’s quite clever in working out that he can make his own signs, which is always entertaining because my husband and I are then trying to guess what he’s signing for. Most of the time, it’s obvious, but he can keep us on our toes!

Sonny’s first sign was ‘more’, meaning to want more of something. Which was a really empowering sign because he could then indicate that he wanted more food, more milk, more songs or more stories. Once he worked out that, he was just so excited because it was just a sort of power. He was really, really excited.

A recent milestone is that Sonny has just got on top of putting signs together! He’s no longer signing separately; he’s putting the signs together to form sentences. It’s phenomenal. Instead of just a single request, we’re now getting that he wants more of something, or he’s finished something, or he’d like to know more about a specific activity.

He’s now reached that incredible milestone, and we’ve been lucky enough that his local education authority has awarded Sonny a talk pad, an equivalent of an iPad. Our house is decorated with symbols, but now Sonny can touch the talk pad to indicate which of those symbols he’d like, instead of having a paper-laminated symbol. This is a huge milestone for Sonny because it means that everybody can understand him.

On a talk pad, everyone can hear him. Anyone can help him with whatever request it is he’s asking. It’s a huge step for Sonny because it is opening up his world to more people being able to understand his communication.

Sonny now

Sonny is an absolute bookworm. He adores reading stories. He loves having stories read to him. He loves puppets. The favourite books at the moment are The Gruffalo or The Stick Man. He absolutely adores nestling up, having a cuddle and having a story.

He also loves spending time outside. He loves being on the swings, and he loves going down the slide. He just loves being out in nature. You’ll find him kind of getting really close to the leaves on the branches and flowers on the floor. In the summer months, we spent hours picking all of these yellow dandelions. He was just in his element because yellow is one of his favourite colours. He was just so excited to pick yellow!

What makes Sense unique

What makes Sense hugely unique is that Sense works with the combined deaf blindness.

You’re not just looking at hearing loss and then vision loss. You’re looking at the combination of those and the impact that that has on the whole child and the rest of the body.  

I don’t think people really fundamentally understand the impact that multi-sensory impairment has on the whole of the body. We certainly didn’t, and Sense has given us so much knowledge about MSI.

The team is so knowledgeable that they support us as parents to help our little boy navigate a world that isn’t set up for people with disabilities.

Sonny’s MSI practitioners are part of our world. They’re supporting us as parents too; it’s not just Sonny. Our teachers have supported us in writing an EHCP (Education Health & Care Plan) for Sonny, and they come to hospital appointments with us. They have difficult conversations with professionals that we don’t feel brave enough to have. They cover so much.

They are just an integral part of our life and of our family, and so are the other families we’ve met along the way.

It really is like a Sense family!