Most days, I keep a positive attitude. It's important to me to do so. Janey means the world to me. I love her more than I can possibly express. She has brought us so much joy. That being said, there are times when the whole autism parenting life is so tough that I am overwhelmed completely. Today is one of those days.
There is no-one who can care for Janey today, to make it possible for Tony, William and me together to be at Freddy's graduation and celebrate his success. There is no respite---not on regular days and not on special days. There are several people who would have loved to be able to watch Janey, but that just were not up to the task, and honestly told me so. I appreciate that. The last thing I would ever want is someone caring for Janey that would be overwhelmed by doing so. There are other people who would have been able to care for her but that live far away---I'm thinking of many of you! But in reality, there is just not any respite. Even today.
We thought about taking Janey and all going. But a quick think-through of that killed that notion. Janey would last about 5 minutes at most at the graduation. Then, one of us would have to take her outside, walk around with her. This would keep her happy maybe for 10 more minutes. Then, she'd be upset, screaming. The person watching her would, to say the very least, not be having a good time. The family inside at graduation would not be able to concentrate and honor Freddy. They would be thinking about how it was going with Janey. Or, we could have gotten a hotel room for a few nights, to have a place to stay with Janey. If that hadn't been extremely expensive (it's racing season in Saratoga Springs, and even a very cheap hotel, especially on graduation weekend, is insanely high priced), it still would have resulted in a long period of time in a room trying to keep Janey happy, and not seeing the graduation. If one of us wasn't going to see the graduation anyway, it might as well be at home, with the resources we have here. Tony missed Freddy's high school graduation. At that time, Janey was in the hospital recovering with many complications from her burst appendix. So---it was his turn to get to go to the graduation.
And I'm here, at home. And Janey isn't happy. She wants to go for a car ride. I have taken her outside repeatedly to see there simply isn't a car here to ride in. That doesn't matter. If she wants a ride, there should be a car. She is miserable. There is no explaining to her that it's Freddy's day. That is not something she understands. She repeatedly says to me "Put on shoes!" "Get jacket!" "Get pocketbook!". She tries in vain to get me to see that she needs her car ride. And I am tired.
I've been sick for the last week. It's a very slow recovery. But like the car, that doesn't make a difference. Janey doesn't get I'm sick. I am exhausted. And realizing, for the millionth time, how lucky it is that Tony is retired now. We are broke, and we probably always will be from now on, but there really wasn't a choice. Neither of us were going to last with him still working. The years of little sleep and little down time added up. It's incredible, still, that the two of us at times can sit down and watch a TV show alone, while Janey is at school or asleep. And if this is life from now on, so be it. But on days like this, it is hard to not reflect on the toll autism parenting has taken on our lives. NOT that Janey has taken. That autism in her particular form has taken.
I don't have solutions. In thinking about writing this post, I wanted to close with ideas for making things better and easier for Janey and for all of us. But I don't know how. It would take an overhauling of our whole society, and at this point in time, that's beyond a pipe dream.
So, I asked myself, why write about this at all? Why upset those who rightfully might feel that I should not explore the negative side, the negative feelings that this day has brought to me?
And I answered myself---well, why do I read memoirs? Why do I avidly read about other lives? For one of two reasons. I read to hear about a life unlike my own, to better understand what it would be like to be someone else---someone affected by war, or by blindness, someone who grew up in a very different culture or family, someone living a life I'm not living. I write to share our lives with others. The second reason I read memoirs is to read about people living a life LIKE my own, to feel less alone. That is the second reason I write here---because I know I'm not the only one living this life, and I want to be honest about my life to let them know they are not the only one.
All my love today to Freddy, my graduate. I know you understand why I'm not there, but I hope you also know how much I wish I could be, and how much I love you, and William, and Janey. Always.
|Frederick David Amara, my dear son|