Stop with the singing, mum!
“’I’m sorry, Mrs Walker, but your 7-year old son will never achieve more than pressing a big button to play a recorded message.’
“How many parents are receiving that awful message right now?
“Well, I’d like to tell them that last year my son James used his democratic right to vote, reviewing all the parties’ easyread manifestos (at least those that could be bothered to write them) and, armed with a voting passport, he was able to cast a legitimate vote – although his choice was completely different to his Dad and I!
“Now 21, James attends group of all sorts of different abilities.
“Through participation in the Youth Parliament he has input into city-wide decisions – he votes himself for who he wants to run the country! He’s learning phonics, sentence building and early numeracy.
“Oh – and he always has a huge smile on his face.
“James does not use words to communicate. He has severe epilepsy. He does not have motor control. Because he could not communicate, he never did any formal education.
“But age 16, James got to test out some eye gaze technology. He did well playing cause and effect games, and on a day I will never ever forget, the first thing I heard James say – in his life – was ‘Hello Mum.’ Unfortunately James could not adequately prove he could use it so we could not get funding from the NHS.
“Well, after hearing James speak through the eye gaze tech, we knew we had to find a way for him to have it. Amazingly, our local community came together and raised the money.
“The “James Walker 100” raised an average of £120 each – and even managed the front page of the Hull Daily Mail. I’m forever grateful.
“James is now starting his third year of formal education. He has so much more independence; eye gaze helps him make so many more choices and he is getting a huge say in his own life choices. It’s not all good though. I always thought he liked me singing in the car. Now, through the eye gaze, he tells me to stop straightaway!
“Having proven the doctors wrong, James is working hard to publicise his story to let others know to never give up hope.
“Just because you’re classed PMLD doesn’t mean good things cannot happen. And by helping us understand what James is quite capable of communicating in his own way, eye gaze technology has revolutionised our family’s life.”
The last word belongs to James of course. Talking about his inclusion in the Leaders’ List, this is what he said: “That is awesome thank you want like.”
How does it feel to be a Learning Disability and Autism Leader?
“That is awesome thank you. Want. Like”
“James’s story will inspire others, and families not to give up.” – Leaders’ List 2019 Judge
“This is a story that simply MUST be shared and heard! The passion and persistence of those that love James comes across in spades and the results speak for themselves – technology can unlock lives! Thank you so much for sharing this story – it has made my day!” – Leaders’ List 2019 Judge