I have started reading a book called The Yes Brain by Daniel Siegel and Tina Payne Bryson. It has inspired me to think differently about Sarah and how to help her/us. It has become increasingly obvious that she really has very little capacity to hear “no” without going into full-stress fight mode. We need to figure out a way to widen that capacity and ways for us to not actually use “no” in our speaking. Last night we had a tiny miracle of a moment at bedtime. When I said it was time to get ready for bed she said she wanted to do Zwift, which is her stationary biking program. Somehow I managed to redirect towards hanging out together in her room as something that we both loved. I promised that she could squish my nose, which is normally not something I enjoy or allow. It was a peaceful moment instead of turning into a fight.
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, April 11, 2021
April 11: Thinking Around "No"
I have also been pointing out to Sarah that she is actually good at waiting and sometimes at hearing the word no. She has a sense of herself as not being good at waiting, but really she is phenomenally patient in many situations. I am hoping that talking about waiting and the word no when the moments are not fraught will help her brain slightly increase its ability to tolerate such concepts.
Anna created more wonderful ways to help Sarah with math. They used a small drawing of a house to be the 1 that is carried in addition. They also made flashcards with Sarah, adding matching stickers to the front and back of a card so that maybe Sarah can associate the stickers with the number problems. I love how Anna is harnessing the strengths of Sarah’s mind and how it works to help Sarah with the areas that have usually been so challenging.
Amy got her braces off! Now she has to wear a retainer all the time except when she eats, but she is already a pro after getting past the first two days of discomfort.
Carl and Sarah assembled a basketball hoop yesterday and then Amy joined them for a game of Witchball. Playing a game of Witch is the same as Horse or Pig, but you are spelling Witch instead.
I got my second dose of the Moderna vaccine on Friday, and yesterday I was definitely more tired than usual, but I didn’t have any other adverse effects.
Lots of love to all of you.
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