Sunday, February 7, 2010

Everything but words...

Jessica may not have been able to talk but she could communicate. She did it with her eyes, her mouth, her gestures, her feet, her sounds, her touch. Just thinking of it is overwhelming. People wonder how my intuition is so strong, it is because of the training I received from Jess on how to communicate without talking. I struggle to describe it. I know her inside out.

When Jessica was finished her meal she would lift her right hand and point to the hanging basket filled with bananas. One day I fed her downstairs while visiting with my brother. When she finished she lifted her right hand to point to where the hanging basket of bananas would have been. I replied that I would get her a banana and she became content. I looked at my brother who was staring at me awestruck. "How could you have known that?" he asked. It took me a second to understand what he was referring to. I explained to him about the basket of bananas, the end of meal, etc. He shook his head and replied that how would anyone else have known that.

That is what worried me. I knew Jess' "signals" so well but taken out of context with anyone else, Jess would definitely have a hard time making her needs known.
It was hard teaching Jess other modes of communicating. She had no desire. I tried to use incentives - another bite of pudding? would prompt her to point to the "Yes" on her placemat. Teachers tried to expose her to computers and adaptive devices but she would have no part of it. If she showed any interest at the beginning, she would not maintain her enthusiasm and it would be like starting all over.
The communication bond between us never faltered. It was a blessing and a curse at the same time. I could almost hear her screaming her frustration all around me and inside of me at the same time.
I brought more people into her life in hopes that someone would have an approach that would work for her. She knew a few signs - and used them! To hear the song, "This Old Man" she would sign 'old'. She signed 'shoes' to go outside. And her favorite was 'finished' which she signed whenever she was done with something. Especially when she was 'done' trying to go to the bathroom. These few signs helped a bit.
It pains me to know that I haven't found a way for her to communicate to others. Did I miss something? Did I never find out the right treatment? Should I have taken her to another place? Find the right people? Was I a good mom?
I tell myself that I did my best, I used all the resources that were available to me at the time, I hung in there. It just doesn't seem good enough but in the end 'it is what it is'.