I hate the word inspirational, but yesterday I heard a story about a ten year old little boy that made me, very nearly use the term.
Ten year old Jonathan was born with a severe disability, unable to speak, feed himself, or even hold his own head up, many people thought that he was incapable of processing the most basic information.
Educational establishments bad taliored his learning experience in accordance with this and instead of focusing on the basic principles that able bodied children learn, Jonathan was given a sensory learning experience, based on stimulating the senses of touch, sound and vision, something that is not uncommon for young people with severe difficulties.
Only a few days ago, Johnathan’s Mum began to realise that her Son was trying to communicate with his eyes despite his locked in syndrome and that not only was he trying to communicate but he’d spent the last ten years of his short life Picking up the way of the world, watching telly, hearing conversation these basic things had given him an understanding of the world that had written him off.
I went to a special school for children with disabilities and I spent a lot of my time as a child with other disabled youngesters, some with far bigger problems than mine.
Disability in its various forms, for me has never frightened me, in fact I take pride in the fact I can speak fluent Sign Language and can easily understand someone with speech difficulties. It took years to hone the skill.
I’ve never shyed away from talking to those who can’t talk back and can distinctly remember comforting an older boy, with similar difficulties to ten year old Jonathan.
Adam, was a boy who’s body just didn’t work, he sat in a wheelchair, his often tense and clearly in some level of discomfort that never went away, and at the end of every lunchtime Staff would lie Adam out on the floor with music playing and his friends round him to make him a little more comfortable.
I was seven years old and it was one rainy wet play afternoon, Adam, as usual was on the floor, for some reason Staff had got me out of my wheelchair too, allowing me to crawl on the floor. Adam was making a funny noise, half way between a scream and a ‘hey, I’m here’ noise. It got louder and louder when I realised he hadn’t got anybody to play with..
I crawled over to him placed both my hands on his forehead and began to talk to him quietly, singing songs and asking questions that didn’t need a reply. After this I would often go and sit for a while with Adam on a lunchtime just talking and never really knowing if he could understand any of it.
Years later after Adam passed away his Mother came to work for School, I used to tell her what I did for Adam to keep him company of a dinner hour and she would always simply say ‘Thank you, I know he would of enjoyed that’.
As I got older, I used to catch a bus to school that would pick pupils up who lived in the same area that all went to the same school
There was a boy, a lot younger than me who like Adam couldn’t communicate, but never the less I’d talk to him all the way to school. I shared that bus with this little boy and over the years, he learned when the driver had stopped at my house and the sound of my voice. He became more and more responsive to my sing songy ‘Good Morning’ and even though he couldn’t reply I’d always get the biggest smile, that was enough to brighten the greyiest of Mondays.
His pick up was always before mine and his Mum would tell the driver what he’d been upto on the weekends and the driver would make a point of telling me so I could say
‘I hear you went for a walk with Grandma on Sunday!’
eyes would widen, his smile would appear and he’d make this excitable breathing that would always make me happy.
Sadly, he to past away shortly after I left school, his Mum always said that her little boy liked me and when she mentioned me he’d smile.
I’m not telling you this because I want to show off or get praise, talking to people has never been a hardship but hearing Jonathan’s story, hearing him finally tell people be CAN understand was a joy and reminded me that just because someone can’t speak doesn’t mean they can’t hear you.
Disabled people understand more than you know and are clever enough to get thier voices heard despite thier difficulties. It’s amazing.
I am in absolute ore of people who cannot communicate and yet still find a way to key there voices be heard, the patience is incredible, I get annoyed when my spazzy hands can’t open a bag of crisps
If you’d like to read Jonathan’s story, you can here