Voiceless in his life so far, a severely disabled 16-year-old is marvelling at being able to speak for the first time after breaking his silence with the words “Hello Mum”, using a digital communication aid.
James Walker is a rugby fan, likes pop music, lives with his family in Hull and has a girlfriend – Emily.
He has a condition which caused hundreds of daily seizures when he was a child. Known as Lennox-Gastaut Syndrome, it left him with a severe learning disability and without the ability to walk or move. Until recently, he also couldn’t talk.
He says it’s “funny” after being silent for so long that he can now communicate with friends and family and, as he puts it, “learn something exciting”.
Using his eyes as a cursor he has learned to click on words and pictures to build sentences with his computer, a Tobii Eye Gaze. The system has thousands of stock words and phrases stored on it, things James might use daily. He is currently set-up to use about 60 words and hopes to increase this number over time.
A wheelchair user with limited arm movement, James’ communication was previously confined to the use of a BIGMack Switch which enabled his parents or teachers to record a single phrase about his day, but offered him no choice of phrase or alarm system.
“I like funny” he says when asked what his favourite type of conversations are and says a further “I like” about making his mum happy when he spoke his first words to her.
Gina Walker had never expected her son to be able to talk. When James’s teacher called her into the classroom recently, she didn’t know what it was about. She was unaware her son had been learning to use communication software at his special school, the Frederick Holmes School, because they had decided to keep it a secret.
“The first words he said were ‘Hello Mum’ and it was just so fantastic I cried,” she says.
“It’s mind-blowing hearing your son speak for the first time, even though it’s a computer generated voice.
“It made the hairs go up on the back of my neck and it’s brilliant being able to have conversations with him.”
James’s new computer gives him a level of vocabulary he previously didn’t have and, for the first time, his thoughts and opinions can be known.
Gina says: “He’s now told me he doesn’t like my singing, and his personality and sense of humour is coming out.”
When dressing him in the mornings, Gina used to show him two choices and go with the one he looked at. “But,” she says, “I had no idea if he was looking at it because he liked it or because he thought it was disgusting. Now he’ll say ‘I don’t like it’ and I’ll have to get him changed again.”
Using his new 60 word vocabulary, James gave us a brief interview
What was the worst thing about being unable to talk? Don’t like
What is the best thing about talking? Learn something exciting
What did it feel like to speak for the first time? Funny
How did it make you feel to see your mum so happy? I like
What do you like being able to speak to your sister and friends about? I like funny
Does it help with your fits? Yes
“At the moment it’s so great to hear his voice that we’ll do anything for him,” says Gina.
There is presently even relish in the Walker household for sibling arguments now they are possible. “His sister Tash will put some music on the radio or TV and he tells her to turn it off which is great.”
James has mastered how to indicate when he is bored at school and, asked if he likes his new communication system, he replies: “I like, I need.”
As well as knowing words, the user also has to learn the context of what the words and phrases mean, so the amount someone can use the device depends on their cognitive ability.
Hector Minto from Tobii Dynovox, which developed the system , says: “They’ve given James core words to get him used to the words and stock phrases for specific situations such as wanting a drink, but the more exposure we can give someone improves their literacy.”
James’s mother says that, now he is able to communicate more effectively, it has also improved his health.
Susceptible to many seizures a day – sometimes with just one or two minutes between them – James did not have the ability to alert his parents or teachers to an on-coming fit.
An operation to install a device which flushes his brain with electricity every three minutes has helped reduce the number of seizures he was having and coincided with James learning to use his new voice.
Gina says he now tells them to either “come help” or “come here” if he feels a seizure is about to happen. “Every seizure is dangerous,” she explains, “so if I can stop them from being full blown it’s worth it’s weight in gold.”
Gina says prior to having the device, he would sometimes scratch his neck, which they now understand to be him telling them something was wrong. At the time, however, they weren’t aware he had a high enough level of cognitive ability to determine this, and so were unable to interpret it as a call for help.
Now that James has the ability to alert his mum, she can do something about it. She uses a nerve stimulation magnet on him to send mild electrical pulses to calm the irregular brain activity which triggers his seizures.
The computer system brings other kinds of independence too. It enables James to control his bedroom lights and TV amongst other possibilities. Minto says some people now live their lives entirely by using their eyes to control a computer. “They let their carers in and out, they live alone at night, and they run their emails.”
Minto claims his company’s system is 10 or 20 times faster than that which Prof. Stephen Hawking famously uses. He says the professor communicates one letter at a time.
At a cost of £12,000, a system like the Eye Gaze is a significant investment. Those who can prove their cognitive ability can apply for NHS funding, but for those like James who are unable to complete a test because there is no recognised method of “proving his potential, the computer must be self-funded.
Family friend David Hoyle, who has a daughter with epilepsy, said he decided he had to get James one of the devices after he heard about it and created the James Walker 100 involving the 100 people he thought would most want to help.
The team carried out a variety of fundraising efforts from running the Paris Marathon to charging friends and family for dinner.
Hoyle says: “One of the worst things about having a poorly child is that they cannot communicate when they are not feeling very well or need something, so, that alone is worth £12,000.”
The team exceeded their target and, as well as getting one for James, were able to buy five more of the devices for his school.
Minto says there is a hope that the “catch-22” situation where you have to prove cognitive ability to get funding for a device could change in the future, meaning that acquiring the ability to communicate may not have to be reliant on charitable money. He adds that the company has been testing eye-tracking devices to demonstrate how someone could hold their eyes on a symbol and follow instruction – he believes this should negate the need for a cognitive test.
As her son gets to grips with his new found voice Gina says: “James has never been able to make a choice, ever, and now he’s able to.”
She says that she wishes her son had been given the device sooner because he has been “trapped for 16 years” She finds it upsetting that many parents don’t even know this kind of technology exists.
“I don’t think people realise how big a deal communication is. It’s been a light bulb moment.”