Thursday, July 17, 2014

Disconnected

Sometimes, every once in a while, I feel disconnected from Kreed. I can't even really explain it in words. There are some times he has conversations quite frequently on his device, then other times, it's only requesting again. These times make me more sad than frustrated. When you look at Kreed, you know there is so much he wants to say. I'm always searching how to give him more language, better language.

Most of the time, these times come when his medical issues are at their worst. It often seems he has to conserve so much energy just to feel well, that it doesn't leave a lot left for anything else. I wish I knew how to make him better. I wish I knew how to ease his pain. Instead we just wait- wait for doctors, wait for tests, wait for health. Meanwhile I watch him continue to lose function in his hands- the peripheral neuropathy is getting worse. He now rarely wants to use his left hand- it's constantly doing the pill rolling motion like it's alseep and he's trying to wake it up. Since his hands ARE his VOICE...it makes him harder to use his voice. That fact alone makes me want to cry at night after he's gone to bed. We worked so hard to give him a voice, only to have various medical issues try and take that voice away.

I hate feeling disconnected from Kreed. It's an odd feeling. Almost like part of me is gone too. I spend so much time with him and working with him and talking to him and anticipating what he needs and figuring out when something is wrong- that when he moves away from me and goes into himself, there are some empty spaces within myself.

Normally times like these prompt me to give him new language on his device. Which is exactly what I'm going to do- try to find new language or more language to make help pull him out of his shell and talk to me more. Every since he found his voice, I don't like the silence. He will also tend to perseverance on certain things like food. Whenever we feel stuck- I always go back to one fact: the more language we give him, the more connected he becomes to us.

I would do anything for Kreed and give anything to him...right now I need to find even more language for him and hope he can find his way back to his voice and communicating more. I feel heartbroken when I don't hear his arguments or his thoughts and how he feels. We live in Kreed's World, but I don't like it when he begins to shut everyone out from joining him. I'm sure more videos will come as we go through this next process of finding more language and more ways for him to say what he thinks, model it for him and watch him enjoy communicating again!