Carl was away for the week so we celebrated his birthday when he got home on Friday. Amy helped me make a carrot cake and frosting, plus using frosting as first aid for the pieces of cake that didn’t come out of the pans cleanly. Sarah and Amy decorated the cake and chose the candles. We also had a conversation about how most carrot cake in the world at large has walnuts and is not Sarah-friendly, which led to talking about many foods that might be off limits for S and so one needs to ask (eg brownies, cookies, banana bread, pesto).
Sarah is a sparkly, passionate, stubborn child of 17. She has developmental delays and autism. When she was 4 I decided to run a Son-Rise Program, calling it Sarah-Rise. She wasn’t speaking or eating well or potty trained. Eye contact was fleeting, she didn’t play games or play imaginatively. She couldn’t read or write. All of that has changed. I started writing weekly updates so that people could follow our journey.
Sunday, July 3, 2022
July 3: Covid, Crocodile Rings, and Being Carl
The bad news for the week is that I had covid. It didn’t hit me terribly, but it wasn’t a picnic. I opened all of the windows and wore a mask whenever I was inside the house or even if I was outside if the girls were near me. They got to watch many shows and movies. Sarah really wanted snuggle time with me but I couldn’t lie down without coughing until recently and by then Carl was home so he was able to be with her instead. Amy and I played many many many games of Who’s She? Which is a version of Guess Who?. The original version of the game is made with cheap plastic and the people you are guessing between are largely white and male and you just ask about physical characteristics. The new version that I got via a Kickstarter campaign is made of wood and features important women from a range of historical time periods and backgrounds. You ask each other questions based on a symbol key to figure out who the other person has as their hidden person based on their life experience (eg did she defend women’s rights? Did she study mathematics?). One of the people on the game is Aretha Franklin so that led to listening to Aretha for as much of the weekend as I was allowed my pick of music.
Sarah’s second crocodile ring broke because both the first and second rings were made of a cheap metal blend. It’s an adjustable ring so over time the adjustments broke the metal. I ordered what I hope is a stronger silver version through Etsy, but while waiting for that I decided to take pity on myself and order something from Amazon that would come quickly. I just wasn’t in a mode to handle Sarah’s impatience. One morning we sat on our porch swing pretending to be Frog and Toad waiting for the mail. Amazingly enough, the mail did come at that time, and Sarah’s new (cheap - probably will break) ring arrived!.
Sarah still asks constantly if we are doing a nickel chart or if we will take a nickel from her. She doesn’t seem anxious when she asks but at the same time I think the time in December when she lost a nickel from her chart at school has stuck with her in some deep way. I used to always say no one would ever take a nickel again. But it seems that on a field trip at the end of the year there was a point system and she lost a point and that kicked everything up again emotionally. So now I have attempted to explain that while some people may mistakenly have nickel systems or point systems no one can take away from the nickels in her heart. No one can diminish who she is. She also sometimes asks if she did anything wrong. I have tried explaining that we all do things wrong and that is part of being human. I don’t want her to think she always needs to do things right (I know from personal experience how wearying that is).
Another frequent refrain is that Sarah asks if a certain kid from her class wears glasses. I don’t know! And when I say I don’t know then she often tells me she is wearing pajamas or asks about nickels. I am having a hard time being relaxed and creative with this because it just makes no sense to me. I don’t know why I need this to make sense when so many other things don’t, but so it goes. I also weary of the nickel questions. But perhaps this hasn’t been my most resilient or energetic of weeks.
Yesterday Carl served high tea with a serving tower made of plates balanced on glass storage containers. Then Amy dressed up as Carl, wearing his new cat tie that he got for his birthday (he also got a crocodile tie), his shirt, some glasses, and his shoes. Then he and the girls played a three hour board game! Sarah spent at least an hour after that time doing Peppa Pig puzzles in her room. And I read an entire novel over the course of the day.
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