As I was in Starbucks with Jacob today (who has a stomach bug, so we had to do the swap at school so Jim could get to work,) I ran into Jimmy's teacher from last year. She is a nice woman and I don't think I have given her enough credit for her work. I just felt a bit at odds with her. I don't think any educator can understand how painful autism is for a family. My husband ran into a family as we were leaving kindergarten orientation. The child had been in class with Jimmy over a year ago. He is starting kindergarten as a seemingly normal little boy. That was our hope when this all began, that it was just a function of catching up. It hasn't been. And it never will be. Jimmy will never be normal. He will always be different.
You get pregnant, you have every test, they tell you your baby is fine. You dream of all the things to come. And your baby isn't okay. They tell you they don't know what causes it, what can fix it, or what he will be like future. My son can't talk to me in any sort of meaningful way, other than to express what he wants sometimes. He has only told me he loves me once and it was because it was I just said it to him. He scripted it back to me. I don't know what he knows, what he understands, what he thinks of the world. He is five years old and still in pullups. There is little help for my son - medical insurers don't cover anything related to his condition, there is a waiting list years long for respite. The people that are there to help, the schools, are required to provide a "free and appropriate education," nothing less, but never anything more. I am not going to bash what I have gotten, because people have made some really efforts on Jimmy's behalf, but I fight for everything. It is exhausting.
These teachers, Jimmy's teacher last year and the year and a half before, have given so much. In my frustration over not getting everything I want or agreeing with them all the time, I don't give them enough credit. These are dedicated professionals. To say it is their job is minimizing their efforts. But this is my child. This is my life. I had dreams for my son - an education, achievement, a life, a marriage, children for him, grandchildren for me. To some degree, I think if I am honest and realistic, some of those dreams may be dead. I have hope that they are not, but I don't know how realistic it is. I don't think there is a teacher or clinician in the whole who can understand what an emotional pain that is to me and to my husband and our families. Not only is it our pain, but it is one that will be shouldered by Jacob. He is too young to completely understand his brother is different, but it won't be much longer before he realizes it. And ultimately he will be the one to shoulder this burden, one that he never asked for, after we are gone. That hurts too.
If my anger is misdirected sometime, I apologize. I just don't know where to put it.
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