Emma: I want to type as you do
I have been having Emma come to the keyboard on the computer for typing practice to work on trying to have her type independently. As soon as I let go of her hand, it falters and she begins to hit random keys. I can feel her frustration.
I think about where we were two months ago and that jaw-dropping moment when we finally made contact with each other. We had reached each other across the complex and mysterious sea of communication. I see her upset now from time to time, so frustrated that it doesn’t seem enough somehow. That she wants to type as I do. I can only imagine what she must feel inside.
And here I am, pounding away on the keys as easily as breathing. I could feel the exclamation in her sentence. She was angry.
Me: “I’ve been typing like this for a long time! You can’t expect to type like this when you just started. You just started. And you can’t get better unless you practice, right?”
I could hear the confidence in my voice, but inside I felt the gravity of her disappointment. Now that she had a means to finally “talk”, her method is slow and painstaking.
I watched Carly Fleishman’s video recently on her website and saw the effort that went into her typing. It seemed at times tedious for her, interrupted by her sensory system. Even Tito still sometimes needs the help of his mother for a little support in writing, prompting him to sit or get his paper. I think of all the obstacles that these children and adults have to overcome for a simple slice of humanity. Basic skills like washing hands, using a fork, sitting in a chair, and so on and so on, can take years to accomplish. Now that Emma had accomplished maybe the most significant goal she’d had for herself -communication – she still needed me.
I have to admit that I felt nervous this year about sending her to school. Even though I knew the teacher would be amazing and the class the perfect environment for her, she would be away from me and away from her ability to communicate with anyone. She won’t spell for anyone, but me, with the exception of a “yes” and “no”. There have been times, where I wondered how it might appear from an outside perspective. It seems like everyone always has expectations and I have been worried that because she still needed me, others wouldn’t take it seriously. I worried for her feelings. I couldn’t bare the thought of it.
But then I began to think of the last chapter in Tito Mukhopadhyay’s book How Can I Talk if My Lips Don’t Move, titled Final Words. It’s STILL hard for me to read that chapter without crying my eyes out because of the painful and beautiful honesty and truth of it on the subject of independence. He, himself, being non-verbal, affected with severe autism his whole life, had found a means by which to communicate through writing, with the help of his mother. He writes about how he is often asked about whether he will live independently at some point in his life. He contemplates:
I may achieve a goal, and I may look forward to achieving others, perhaps till the last day of my life. I may rejoice in some moments, and I may wish some moments away in the process of working toward my goals. While I work, there will be people around me, either to help me or not to help me,to judge me or not to judge me, to care about me or not to care about me, while I walk on the pathway of time through darkness and shade or light and it’s reflections.
Talking about independence makes me wonder, Who is truly independent in this world? A farmer who grows his food is dependent on a baker, a barber, a doctor and so on ……
How independent would I be? I might ask “How independent is he, or she, or that man on the street?” Even the universe is not independent of any of those laws that bind it together.
I could quote this whole book…and I may end up doing just that throughout these entries. It was a powerful message for me about the nature of our independence. It made me think “Are any of us really doing it alone?”. Maybe it’s okay to rely on, and in turn, be there for one another. Isn’t that what love is?
I have now begun to look at myself as a translator for Emma, an interpreter. Now Emma needs me to help her with this particular skill, but soon she will be moving on to another. And I think she is teaching me way more than I am teaching her.
I told Emma about this post and read again this beautiful excerpt from Tito, whom she adores. I asked her what her thoughts were about independence.
Emma: I am trying to reach independence in my typing
Me: “Do you believe it will happen?”
Me: Can you think of a name we could call this entry?
Emma: Independence tomorrow
Had to use it!!!!