Meet Soren. He is part of Citizen Care’s Life Sharing program for children with medically complex conditions. He lives with his grandmother, Tracy, who is his Life Sharing Partner. Tracey shares Soren’s story of struggling to communicate until he received an Augmentative and Alternative Communication (AAC) Device.
This story is in Tracey’s words:
For years, Soren struggled not just with speech but with communication. He taught himself to raise his arms for “yes,” sometimes blinking too. The school taught him to just blink, which was hard to interpret. For “no,” I tried teaching him to hum with his tongue behind his teeth, then pucker. He adapted this by puckering and sticking out his tongue. I can understand these cues, but others can’t.
His posturing was mistaken for seizures, but it was discomfort. When he raised both arms and yelled, I knew it meant “yes!” I’ve learned his unique sounds and expressions, but few others can unless they spend a lot of time with him.
One of the worst things was figuring out what was wrong when he was in distress. Simple issues like an itch, eyelash in his eye, or a muscle cramp could trigger a neurostorm, which can become septic. I longed to quickly figure out what was bothering him. I also desperately wanted him to be able to tell his doctors what he felt.
I’d point to different parts of his body asking, “Is this the boo-boo?” until he blinked. I asked the school to trial a communication device, but they refused, saying he wasn’t ready—even though he had used eye gaze and switches before.
We recently had the opportunity to trial an AAC device, and he used it immediately! I programmed it with things he struggles to express and what I believe his expressions mean. It includes his needs, discomforts, greetings, and emotions. He understands, just as I said he did. He has cognition and now, a voice.
He can say what he wants, needs, or feels. He can ask for family, say he needs help with daily care needs, or that he’s thirsty. He can say “I love you” and let us know when something hurts. He even interrupts conversations because he wants to be included, and I let him!
This device has eased his physical suffering and opened a new world for him. Until he can speak or use a device like Stephen Hawking’s, this is a true gift. Being able to talk with my best friend is priceless.
Photos of Soren in his tux are from his aunt’s wedding, where he served as best man.
Citizen Care Life Sharing program
Citizen Care Medically Complex Conditions Life Sharing program
