Being a caregiver is not an occupation one trains for. Its more apt to sneak up and snare you. I became a caregiver when my youngest son suffered birth trauma that left him with a diagnosis of cerebral palsy.
You never know with Cerebral Palsy how the disability will affect the child. Some children are only affected on one side. Some deal with spastic muscles, others deal with muscles that are too loose.
In my son’s case, he dealt with all of it. His muscle tone would fluctuate, some days being almost normal, other days rigid, followed by periods of extreme muscle laxness. He never knew what it was going to be and he had to learn to adjust accordingly.
His speech is not effective. He has a voice but its most often not understandable. For functional purposes he communicates in non-verbal ways. His eye-gaze is 100% accurate and he talks with his eyes. He has signals that I understand but don’t ask me to explain them.
It’s hard for a caregiver to know when to step back and let the person you care for expand and grow. My son has reached a point where he needs more than I can, or should, give him. With the help of the eye-gaze Tobii/Dyanvox computer, he’s become verbal. He’s learning to be literate.
My son needs to learn how to talk, to converse, to read, and most of all, to write. He dreams of being a writer. Before the eye-gaze Tobii/Dynavox came into his life, I didn’t know he wanted to write. He wasn’t able to tell me and the possibility of it was beyond his reach.
The ability to communicate, to verbalize a dream and bring it to life. How often does that happen in life? I have a ringside seat. All I have to do is remember its not my dream. I only get the privilege of watching it unfold. The world has expanded and my son is growing in skills that will allow him to forge a new path.
Its time for this caregiver to step back. My son needs to talk to the world. To do that he needs to practice on people who don’t know his non-verbal communication. My son is learning a new language and taking us along for the ride. And what a ride it is.
