About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Monday, June 20, 2016

Stuck at a crossroads and need to know which way to turn

I've been thinking about Jayen's communication a lot lately. He has come SO FAR!! Today as we were pulling into the driveway he said independently, "I see truck!". He's been asking for help independently, calling for his siblings, demanding his defiance, and so much more. But is it enough?
My day dreaming is taking me to places I don't like to go. I know he is making progress but at some point in time we will have to decide if it is enough. We will have to decide if we need to push another form of communication. He does some sign language and uses his augmentative communication device but we push mostly verbal communication right now. Will that need to change? I understand him. Family that are around consistently understand him. Our family friends understand him. But his peers still struggle. I can't be completely naive and say there aren't times I don't know what he is freaking out over. We have looked for imaginary objects many times over and just explain that we can't find it right now. It doesn't usually pacify him until he finds something that was more interesting than the original thing he was looking for.
As I stare at his face, more importantly into his eyes, I see so much wonder and understanding. But how can he show the world all that those eyes long to see? How can he tell me all the places he wants to explore? How do I know what he has experienced when he's away?

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