Shining a light on Arthur’s achievements

Since finding Sense, Arthur’s mum, Samantha, has learned so much about how to communicate and play with her 3-year-old son. Together with their support worker, the family are enabling Arthur, who is deafblind, to explore his senses – including vocalising for the first time! 

I’d say Arthur, he’s a bit of a goofball – he loves play, blowing raspberries and he’s funny. Arthur’s largely non-verbal, so he expresses himself with his hands and eyes. He’s got very limited vision, but he can still give you a certain look when he’s after something. And when he’s in a good mood he’ll blow raspberries as well – it’s self-stimulation, happy stimming! 

We’re learning more and more about how to communicate with each other. Since finding Sense, we’ve learned so much – about how to play with Arthur and how to help him develop and explore his senses, including vocalising for the first time.

Heart-melting milestones 

Arthur is deafblind, with limited vision and hearing. Up until meeting Sense, he’d been non-vocal. But when his support worker, Nicky, introduced Arthur to a sound-activated strobe light, he started vocalising. It was incredible. He realised this toy responded to noise and wanted to experience the flashing lights. It just melts your heart to hear him. 

Finding out about his sensory impairments, our parenting handbook went out the window. We couldn’t read to him and didn’t know how to play together. Even when he got his glasses, he wouldn’t reach out for toys. I remember the first time I met someone from Sense, it helped me realise that caring for a disabled child doesn’t all come naturally, there’s a lot you have to learn, to be shown. 

Nicky is a Sense MSI specialist (multi-sensory impairments). She arrived into our lives with so much useful information and so many ideas for how to build a programme to support Arthur. I think the first big hit was the resonance board. Arthur absolutely loved it, especially feeling the vibrations of windchimes. He actually started to reach out and play with the chimes, which was a real milestone. You don’t hear the laugh very often, but he was laughing then – and we had big smiles! It was really sweet.  

We’re really truly grateful for Nicky and for Sense. And if it wasn’t for Nicky, he probably wouldn’t be where he is now, vocalising and exploring the world around him. It’s been an absolute godsend. At the beginning, we didn’t know what milestones we’d ever be able to reach. 

Arthur’s overcome so much

Arthur had a very tricky start, an extremely tricky start. He was born 10 weeks early and we spent a lot of his first year of life in hospital. There were some touch-and-go moments; it was traumatising for all of us. It was here we first got told that Arthur had Kleefstra syndrome and would have developmental delay, but no one told us what it meant or what to expect.  

We didn’t know at that time that Arthur was Deaf. It was only when a nurse saw me reading stories to him and jingle a bell that it was suggested. He hadn’t responded to the sounds at all. As he grew up, we noticed he wasn’t responding to things in front of him, he wasn’t tracking with his eyes. He was two years old when we found out he was blind too. He has very little vision, and it’s blurry.  

Now though, he has his hearing aid and glasses, and they help. Looking back over the last few years with Sense, Arthur has overcome so many challenges and achieved so much. He’s much more aware now, and more confident. I think it’s easier for us to see that this is only the beginning. Children like Arthur, you don’t realise how resilient they are. I’m looking forward to him starting school in September, and just seeing what the future will bring.