I'm not doing a good job.
|The bane of my existance|
So what do I do? How do I handle this? I KNOW she could learn to use the remote that controls the device. But when I try, she screams. She lashes out. She gets hysterical. If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours. She doesn't quit. She doesn't give up. Believe me, I have tried this for YEARS.
I've told myself at times to just accept this, to see it as a time to interact. Fine. But it's not an enriching interaction. It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute. Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes. Then it starts again.
This interaction is mirrored in so many others. Janey asks for a car ride. She wants to get chips at the store. She wants a shower. Nothing else will do. No variations work. No amount of refusing, or explaining, or substitution, or distraction, or anything else, works. When I try something new, she refuses it. When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.
In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them. I am never tired, never sleep deprived, never bored, never just fed up. In my dreams, Janey is different too. She responds to my patience by trying new activities. She surprises me with glimpses of the thoughts I know she has stored in her mind. She is quirkily fascinating. She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.
The problem here is, of course, that Janey and I am both human. We are not stereotypes. We are not perfect. I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often. Janey is stubborn, unyielding. She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are. She is strong, determined, enthusiastic, yes, but also stubborn and unyielding. Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.
The mother I mean to be finds a way around the challenges. The mother I am---sometimes not. Janey and I am both who we are. Perhaps that is the message here. We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.