I’ve experienced two types of loss this past week that had me thinking about life in general. A friend lost a parent and my daughter lost a tooth. The chasm between those types of loss is vast but to a person with autism they are the same. I think of what a mess I’ll be when I lose my parents. A morbid thought I know. If my mother knew I was writing about this she would be upset. “How could you think about such things?” I could hear her saying, whereas my father has brought up retirement, life insurance, the importance of having a will or living trust. He’s always thinking ahead and prepared for anything that could happen. This is the difference between my Italian side and my Polish side.
As a parent of an autistic young adult we think of what will happen to that child when we are gone. I’ve talked to other parents of autistic kids and no matter where your child fits on the spectrum this weighs heavily on our minds. I know that if something happens to me that my daughter will become a ward of the state and live somewhere else. Her brother can’t take care of her and her father can’t/won’t take care of her. It is something that I need to accept because, God willing, she will out live me and will live on her own in some way, shape or form. This will happen.
My daughter can show an immense understanding for certain subjects and surprise me at times with what she knows. Her savant-like memory astounds me! I could have really used a memory like that in college. Just when I think that she is making progress in one area, I’m reminded that she is childlike in another. She had to be have anesthesia when she had to have a tooth pulled last week. I was proud of her when she sat in the chair and let the doctor put the needle in her arm. That feeling was short lived because when she saw the needle in her arm she started crying like a two-year-old. “I can’t have this in my arm for today and tomorrow!” she cried. The doctor explained that it would only be in for 10 minutes and that when she woke up that it will have already been taken out. To see your 22-year-old daughter crying like a toddler because she can’t comprehend something so basic breaks my heart into a million pieces. This is when it hits home that no matter how much progress she makes in other areas she still has deficits. She still has sensory integration disorder. She still has OCD. She still has autism.
What will she be like when I die? Will she realize that I’m not coming back - ever? It won’t be like I just ran out to the store and I’m coming home in an hour. Will she be able to ever accept the finality of loss? She only lives in the present and has very little understanding of time. Isn’t that something that we are told to do now a days? Don’t dwell on the past or think about the future, just live in the present. Living in the present is the cure for worry and anxiety. This is what I’ve learned from her and her life: don’t dwell on the past, prepare but don’t worry about the future and enjoy the present moment.