It was a rough night tonight. There was screaming. There was perseverating. Objects were being hit. It was one of those “I hate autism” nights. I was calm. I used the PODD. We got through it. And eventually after the storm cleared, Debbie calmed down. I am in a mourning place at the moment. Every now and again when things are tough I go there. Not because I feel sorry for myself and certainly not because I feel sorry for Debbie. I go to the mourning place because I am feeling beaten down by some of the daily frustrations and struggles that accompany Debbie’s autism.
She was awake extremely early and she did take a nap. Since I need her to sleep at night napping beyond 2 hours is not a choice for her. So I woke her up. And because she was STILL tired, like any of us, she was grouchy. With grouchy comes tantrums and to some extent meltdowns.
School was closed due to weather today. She didn’t want to go when I told her we were going tomorrow. Sunday nights and the last nights of vacations are always difficult because of the mindset shift. Add the disruption of weather and being tired and we have a recipe for tantrums and/or meltdowns. Tonight, pardon the pun, was the perfect storm.
And so now I’m in my mourning place. I’m mourning the loss of my plans that i conceived a long time ago when I was just a young girl. You know the ones. The plans you made when you were playing dress-up or Barbie. The plans you made when you laid in your bed in the dark and your wheels were turning over and over, simply thinking about your future.
I had it all figured out when I was roughly 13 years old. I was going to get married after college. I was going to have at least two children. First one at about 27 and the second one at about 30. Those goals were achieved and might I add on my time schedule! Just like my parents before me, I was also going to have a girl and a boy. I had a boy and a girl but close enough to consider my goal being met. And my little girl and I were going to be as close as my mom and me. This became especially important to me after my mom passed away 5 months after Debbie was born. And Debbie and I are close. No doubt in my mind. I’m the one she definitely comes to in times of need. We have an unexplainable bond. I can read and understand her better than anybody and Debbie, even if she can’t communicate it effectively, gets my rhythms and moods. But, especially on nights like tonight, it feels like a piece is missing and that’s other thing that I mourn.
The lack of communication can be overwhelming and breaking through the barrier of a tantrum adds to the frustration. I mourn the loss of having a meaningful dialogue or conversation with my daughter. And maybe that sounds selfish because I should be grateful that she can talk as much as she does. But I want to talk about tween stuff with Debbie. I want to talk about make-up, fashion, and basic sex. I want to talk about boys, annoying or otherwise. I want to say, “Hey. I know you don’t want to go to school tomorrow but the more you are out now, the longer you will be there in June and that will definitely suck,” and I want her to get “it.” G-d knows I was not the most cooperative child/tween/early teen on this planet and I had my share of drama. At the same time though, my mom and I would take long walks and have talks about life. I am mourning the loss of having that at this moment.
So yeah I’m in mourning of the mom/daughter relationship I planned a gazillion years ago. Selfish or not, it’s where I am at the moment. Tomorrow Debbie will probably do something really cool and I will be shouting from the rooftops about her newest, most Ausome accomplishment. But for now I’m in mourning. xoxox ~ Julie