It’s all about the lens through which I view things. This week (again) felt difficult many a time. I became quite aware of the refrain in my head of “I should have… If only I…. How did I not think of….How stupid of me….” It’s really rather exhausting. At least if I’m noticing those voices then maybe I can get them to change their tune.
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, September 27, 2020
September 27: Roller Skates and Musical Note Everything
Then I looked at some of the pictures from our week and remembered how many wonderful things happened too. The girls got their roller skates and have used them many times, while wearing knee pads, elbow pads, wrist guards, and helmets. I was not permitted to put bubble wrap around them and Amy was clearly better off without my “help.” Most practice sessions happened with Anna or Carl.
There are so many moments when I can focus on the glaring discrepancy between where I thought I would be with a 13 year old and where we actually are. I go through all of the stages of grief in a nano-second. Seemingly at the same moment I can remember to be in awe of Sarah, especially compared to the early struggles when so much was unknown. The question is, if crawling used to seem laughably impossible and now that same child is independently learning to roller skate, then why do I feel that academic prowess or learning to wait easily will never be attained?
Sarah always wants everything to be in a musical note pattern (despite screaming in protest every time I mention the idea of practicing piano). The staff perfectly combines her love of stripes and dots. She wants a musical note house. She has repeatedly asked for a musical note shirt. Carl’s mom made Sarah the most wonderful matching musical note shirt and shorts. As I sat on the couch to view the new garments, I progressively slid towards the floor as I was ever more in awe of the little touches that showed such attentive care towards making Sarah’s dream a reality. Sarah loves to talk about shiny buttons and Grandma added the shiniest of sparkly buttons to the shirt. There is a black stripe down the side of the shorts! Now Sarah can wear all musical notes from her mask to her clothes to her backpack. All she needs are socks and sneakers to match!
Amy made lockers for their schools days at fairy school (which was also real school). For three days I managed to pack lunches and then I questioned my sanity at thinking that was a good idea. One of the best parts of remote schooling is not having to pack a bleepin’ lunch! So for Thursday and Friday they got their lunches in the “cafeteria.”
Amy’s braces were tightened on Friday so she was a sad cat with a sore mouth for a few meals. She was less miserable than for past tightenings because this time I remembered to give her Advil right away and I also served the same soup and mushy food for all of us so she didn’t feel deprived and envious of what others were eating.
May you have kind voices in your head and around you.
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