When Sarah was a tiny baby there were times that I felt trapped because any time I would try to do something I wanted to do she would start crying. My mom reminded me that I was actually allowed to still have a life. It was ok to go for a walk with Sarah and it was ok if she cried. Once I made the internal switch to remembering that I had some power then we would go for a walk, our crying would ebb, and life would be better. Sometimes now I feel trapped by various parts of life and forget that I’m allowed to do certain things even if everyone isn’t happy about it. I can feel that my very presence messes everything up and derails Sarah’s focus or equilibrium, while simultaneously feeling weary about how often Sarah wants to snuggle with me so that I never get to do my own thing! And very often “my own thing” is cooking or cleaning or doing laundry! This doesn’t leave me with much room to be me. I’m trying to remember the equivalent of “I do get to go for a walk.”
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, October 18, 2020
October 18: Struggles, Snuggles and Detective Sarah
Sarah’s latest favorite script for our snuggle time is to say “shiny shiny shiny, tiny tiny tiny.” I added “teeny tiny and sheeny shiny.” This started when she was looking at her baby pictures. She was a tiny baby! We also expand on the theme to include past themes involving sad mice or “shave and a haircut two bits.” Recently we employed Bandits On The Run to create singing telegrams for Sc. and Anna based on their playtime with Sarah and Amy. Sarah loves to sing the songs and we often take turns with verses as we snuggle, sometimes changing the words to include more of Sarah’s loves.
Carl and Anna and I had a meeting to discuss Sarah and schooling. It was wonderful. It reminded me of SR team meetings from years past when we would come up with amazing new ideas. One of our favorite ideas is to have Detective Sarah. She so often asks questions about life and the world that I answer but don’t answer in depth. Now Detective Sarah has a notebook for such questions (with Anna as the scribe) and then Anna can use those questions to explore all sorts of subjects with Sarah. Recently, when they went for a walk Sarah noticed a lightning rod on a house and asked about it. When they got home, Anna helped Sarah make a lightning rod for her small house. Sarah wrote about the purpose of lightning rods on a speech bubble that was attached to the pipe-cleaner rod that was attached to the small house. The speech bubble and lines were drawn by Anna. Sarah did the cutting and writing. Amazing! They also made a paper door with a label about the function of hinges. When you open the paper door you find a picture of Sarah. I feel like we went from wondering how to possibly engage Sarah in things pertaining to science or history to suddenly seeing the entry-point to a million possibilities. Of course Sarah’s own questions are the doorway. How did I not think of this before?? As with so many things, once something is realized it is blindingly obvious, but before it is realized we are blind to it.
Anna and Sarah have been doing math with the small house, placing objects inside while counting or adding the number of things inside and outside the house. Sarah writes in her journal daily with Anna’s help, writing about her experiences or loves. Her writing is clearer than ever and she writes much more than ever before. Anna also helps Sarah with her reading by writing sentences about what they were recently doing and then Sarah reads the sentences out loud. This seems to be helping Sarah speak more clearly in general. There have been many times in the past few years when I have thought I should get the Sarah-Rise program going in full again, but then I have always felt like I just couldn’t. I just don’t have it in me. It is a dream come true to now have Anna running Sarah’s schooling in a full-SR way, better than I could have imagined. My jaw drops on a daily basis when I see what they create. This is a most positive side-effect of Covid-19.
I can see that for all of my struggles, my main goal is that the people who live in our house or frequent it feel supported in being their full selves. Sarah and I just need help making room for our full selves so they don’t get tangled.
You get to go for a walk.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment