Some key facts about Kyram:
Age 12, can’t walk, sit or stand up on his own. Hearing impaired and mute. Has sleep apnea (tendency to stop breathing when asleep). Requires 24 hour quality professional care. Born 4 month premature with cerebral palsy and has limited or sporadic control of his muscles.
Photos courtesy of author.
Sure, some key facts about Kyram, but they don’t tell the whole story. At least part of the story has to be inspiring! His totally dedicated father, Myles Dear, told us, “There are a few muscles he has harnessed under his control consistently – the tongue click being one of them. Although he can’t control his tongue to form words, he can at least click the tongue consistently, and that’s driving his communication.”
But more recently, Myles reminded us that “In 2016 Kyram suffered a sudden neurological collapse that took away his tongue click but also allowed him to use his eye tracker with an accuracy never before possible.”
Some years ago, an amazing breakthrough for Charlane MacKenzie, a long-time caregiver and Myles who through eye-blinks and tongue-clicks had succeeded in establishing initial non-verbal communication with Kyram.
Communication and learning interaction is now much further advanced thanks to sophisticated eye tracker keyboard technology and to the eagerness and alert intelligence shown by Kyram.
According to Charlane the big challenge now is to encourage Kyram to express his thoughts more than just answer questions and this means: “watch him very closely, and connect with him so you know what questions to ask, and what choices to give, etc.” “Frequently, Kyram becomes frustrated with us because he wants to do, or not do, something, and we just don’t get it.”
Kyram spelling the name “Jesus” on his communication computer. Source: theauthor.
Here is an amazing account from Charlane of a recent interaction with Kyram around 1 John 3:16 (“This is how we know what love is…”)
One of the more difficult tasks we are pursuing is spelling with his eye tracker keyboard. All 26 letters of the alphabet, in the same configuration as his “pencil,” appear on the eye tracker screen, so you can imagine that the “targets” are fairly small. Even with calibration to give him the best chance of hitting the targets, spelling on the eye tracker is not easy…
On Monday, after reviewing his favourite Bible verse, 1 John 3:16 (I think he likes it because the children in the video sign it, so we sign along with them), I began spelling the verse on his eye tracker. As usual, he arbitrarily “inserted” a few different letters, but I changed my tactics and asked him if he could “hit” the correct letters, as I named them. He responded by doing just that! Because he knows the verse, he even spelled two of the words, “love” and “us,” without prompting and completely independently!