Last night Sarah was reading the most high-level complex book I have ever seen her really read, following along with her finger and quietly saying the words out loud a bit as she read… it was the draft of my book about her! In my book I have a section about a time when some of us wrote books for her in varying levels of complexity. How meta-level wonderful if she now becomes a more focused reader of small print and long sentences because of a book about her. One could say this is just a longer book for her. Speaking of said book, I am getting ready to submit the required pieces to a hybrid publisher to see if they will be interested. That feels very real and exciting and also rather terrifying in its realness. I also need to shave a mere 20,000 words from the book as a whole. Luckily they don’t need the whole thing yet, but I still know their word limit. Yikes. I know less is often more and trimming will make it better, but…gulp. That means cutting more than just a word here and there.
Despite writing about staying calm in the face of Sarah screaming, I actually continued to do so throughout the week. Often if I write about figuring anything out then I lose it and flounder around thinking that sharing about it somehow was a jinx. There were many more afternoon screaming sessions due to the anticipated Tigger watch not arriving until Thursday afternoon. Things that helped me feel truly at ease included !) knowing that I did not need to stop the screaming or change Sarah’s response in any way, 2) remembering that she would be in clearer, more present shape after getting her screams out, 3) realizing that she was actually doing a phenomenal job of waiting and being calm about it for most of every day.
The times in the week when I didn’t maintain the calm I so covet were when timing was tight in any way. Sunday evening Sarah kept wanting one more minute in the bath and kept not washing her hair or letting me do it, and I watched the minutes tick away, worrying about how Amy would have time to shower before dinner and about eating dinner on time. I got so stressed about it and disappointed in myself for being tense that I had to go curl up in a corner and cry hard for a few minutes. But then I felt better and could remember that this is all a process. I also didn’t respond as calmly to Sarah’s upset about the watch when I did have somewhere to go and her upset included opening my desk junk drawer and wanting to go through it all in search of a watch. I didn’t scream but I was not easy-going. Luckily the Tigger watch did arrive on Thursday. Sarah was upstairs on her iPad when it arrived and didn’t hear me calling, “Toad! Come downstairs!” She likes to pretend to be Toad from a Frog and Toad story about waiting for mail. So I sent her a text saying, “Toad! Come downstairs!” It was a delight to hear her read it and run downstairs. Perhaps that moment helped her realize how texting can convey real information because yesterday during her zoom with Mom-Mom, Sarah actually texted some real words rather than just strings of gibberish.
Tuesday was so unseasonably warm that we had friends over for an impromptu pizza dinner on our back deck! The idea for pizza outside was hatched by Amy and her friend, although they wanted it to be at the pizza place near the park. I suggested that I order pizza from a place that has dairy-free options so that it would be better for Sarah and it all worked out beautifully.
Swim lessons resumed after a month off while the pool was being repaired. Sarah and Amy excitedly donned their new tiger print swimsuits so they were matching tiger cubs. I put on my customary suit that is many years old and realized it is nearly disintegrating, so one morning I went to Target and survived the process of shopping for a new suit. I even found one! And I wasn’t too hard on myself in the dressing room, although I do wonder who wears the tiny things that barely cover a person. When a suit is on the hanger you can’t always tell how it will work when on you and I had many giggles of disbelief as I discarded all of the options that would look ridiculous on me.
I watched part of a talk by Raun Kaufman and it helped me think differently about some of my interactions with Sarah. Raun is the original Son-Rise Program son and now helps many other families relate to their loved ones with autism in effective ways. Thanks to his sharing, I realized that I had forgotten to celebrate all of Sarah’s communication as communication. I hadn’t thought about how she might pick up on the times when I don’t want her to talk about a certain subject and possibly generalize. I mean, I know she knows that I don’t always enjoy her talking about hitting, but I hadn’t thought about the message my response might be sending overall about any attempts to communicate. So if I want to encourage her to talk more about her life in general, then that means appreciating every attempt at conversation, just as I did with her first attempts to say words. I signed up for a two day zoom class at the end of March with Raun and with Kate Wilde, another Son-Rise expert. They have a new venture called the Autism Crisis Turnaround and I’m excited to get refreshers and new ideas.
What most stands out to me about the changes in how I relate to Sarah’s screaming or some of her repetitive verbal patterns is that those changes don’t feel difficult. When I change my underlying thinking then it is like turning on a light in a dark room with an obstacle course. Where before I might have been straining to see and traverse the path, now the light is on and I can just see easily so of course it is easy to walk through. Because I am seeing it differently. I remind myself of this when I have moments that feel hard, reminding myself that I don’t have to strain and force. I just need to give myself time later to think about it so I can maybe turn on a light. And the more freedom I have to allow Sarah to have her feelings without needing to change them, the more freedom I might have for my own feelings without trying to shut them down or change them before they have run their course.
One night Sarah wanted to talk about Amy’s upcoming birthday bash sleepover at Anna’s. Amy didn’t want to talk about it then because we were on a family zoom. Sarah started screaming, probably feeling anxious about the sleepover and wanting the reassurance of making plans. Amy was upset that Sarah wasn’t letting her talk (I can relate!). So they were both screaming and we were on the zoom and Carl was out of town so it was just me navigating the situation. I actually stayed mostly calm! I asked that the girls wait till we were off the zoom (momentarily) and that then they could scream at each other. We exited the zoom, and Amy still wanted to tell Sarah something. Sarah still had no internal space for that and just screamed more. I had Sarah go up to get ready for bed and I sat with Amy, listening to her tears and frustration. After her storm had passed I talked to her about the whole idea of how our beliefs influence our responses to things like Sarah screaming. I talked about my own thoughts and changes. She was very snuggly as she listened. I don’t know how much it will help as we move forward, but it felt like a good parenting moment. I wasn’t trying to change how she was feeling but I did want her to know that sometimes there are doors to freedom and we don’t have to feel trapped by Sarah’s screaming.
Lots of love to you all, and space for all of the feelings you may have in their entirety.
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