There was only one day of in-person school last week. Monday was a holiday, Tuesday was a snow day, Wednesday was a “flexible instruction day” because of the cold, and Friday was another day for schooling at home, which is what a Flexible Instruction Day means. Having assignments to help Sarah complete took me right back to the pandemic days and I marvel that we all survived that time. She still has some worksheets to complete today to finish what was sent home for Friday. Thursday was the only day for in-person schooling and Sarah was so excited she was bouncing on a large exercise ball while waiting for her bus. On the days when she learned that she had to stay home she was very upset, sometimes screaming and crying for half an hour over the upset. Friday was doubly hearbreaking because not only did she miss the rides with her driver but she also missed gym class, which only happens on Fridays. Amy was delighted by the whole situation because it meant postponing MAPS tests, which are standardized tests that she does not enjoy. Friday afternoon the girls did an at-home gym class together to make up for Sarah’s missed class.
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, January 21, 2024
January 21: So Many Snow Days - Sort Of
Luckily Thursday was the in-person day because that also meant the girls got to have their fancy braids that Anna did for them Wednesday evening. Sarah’s was a braid that started on one side and went over the top of her head to the other side then wrapped around again. She looked like a princess. Amy had two braided buns.
Thursday evening we had swimming and while we were waiting for the shower I made the grievous error of checking my phone and informing Amy that she had a virtual day on Friday. Sarah is no dummy and she inferred what that meant for her, even though I hadn’t yet heard. She was very upset in the locker room and shower. I wanted to be swallowed up by a black hole, as the tiny space was packed with people and I felt like I had brought this upon us. Somehow we survived without Sarah having a complete meltdown. Her swim teacher stayed with us even though she was dressed and could have left. That was so kind it gets me teary just thinking about it.
Speaking of getting teary, last night Sarah had a birthday party to attend and it was also a sleepover. Sarah’s first sleepover at another kid’s house. This was a really big exciting deal. When I dropped her off I felt teary about how sweet and kind the other kids were as they hugged Sarah hello. They all seemed delighted to meet me as Sarah’s mom. I felt so good about our choice of Sarah’s school because these are her resource room classmates. Unfortunately, Sarah then got sick after a couple of hours and threw up, so I picked her up and she didn’t have the sleepover after all. I don’t know if she had a tummy bug or if she wasn’t handling the dairy from the pizza and ice cream. I do limit her dairy intake because it can produce too much phlegm, but it’s usually not instant and I do let her have some on special occasions and usually she is fine with it. So I’m feeling regretful that maybe I brought this upset upon us by not thinking to provide non-dairy alternatives. But maybe it was going to happen no matter what. Sarah’s classmates were concerned about her wellbeing and one of them was by her side rubbing her back, caring for her with the host mom until I arrived. That was also so very sweet.
Sarah was glued to my side for most of last night in bed (she seems better this morning) since Carl and Amy were away for the night so they could get a full day of downhill skiing today. Last weekend Carl got cross country skis for the girls and took them out for their first experience of it. Sarah had been on cross country skis on Carl’s back when she was a baby, but I doubt she remembers that adventure. I do not think I will ever cross-country ski or attempt downhill skiing again because I’m too worried about any fall messing up my artificial hip. I’m sure many people ski and fall with new hips, but I don’t think that will be me. Instead I have just been bundling up to stay warm inside and outside. I got a new shark blanket bag thing that is both warm and hilarious. Alternatively, I often wear two sweaters or a bathrobe and hat on top of my regular clothes.
Yesterday we went to see The Red Dress exhibit at the Frick Art Museum. The Red Dress travelled all around the world so that different people from all over could embroider it. Pittsburgh made its own Calico Dress with contributions from many local artists, including Carl’s mom and the mom of Amy’s bestie. Both dresses are beautiful and if you haven’t already seen them I highly recommend going. The exhibit runs through January 28. The museum provided paper and colored pencils so visitors could make their own designs to post on the wall. Amy drew a cat face in a heart and we put it on the wall. Now she can say she has a piece of her art in the Frick Art Museum.
I hope you are all well and warm.
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