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, February 18, 2024
February 18: The End of an Era
Sunday, February 11, 2024
February 11: Going Really Well/Not-Well
For her birthday Sarah received a large lollipop and Friday night she delighted in licking it while singing the lollipop song. Meanwhile, Amy is being consumed by The Hunger Games, which she has been listening to as an audio book. Both girls are slightly consumed by their new phones. We got them phones because Amy’s iPod was on its last legs and I was increasingly wishing I had a way of communicating with her outside of school hours when she might be waiting for me to pick her up or waiting for the bus in the morning. Also, a few weeks ago there was an incident in Pittsburgh where a girl with special needs was dropped off for school but the school wasn’t in session that day. The girl was missing for many hours. I realized how terrifying it would be if something similar happened with Sarah, because her school isn’t easily near places where she could go for help. I wanted to have a way to track her and to call her or for her to call me in an emergency. We have Sarah’s phone programed so it won’t work for anything except to call us during school hours. So far, as soon as she walks in the door after school she takes out her phone and starts playing on it before she removes her shoes. We do limit her daily time with it so I’m ok with the magnetic pull it has as soon as she gets off the bus.
Carl and Sarah practiced “Hush Little Baby” yesterday with Carl on the guitar and Sarah on the piano. Then Amy joined them and they played and sang songs from the musical “Six,” which is Amy’s new favorite soundtrack. Not to be outdone, our cat decided to nibble on the small puppet stage that Amy built out of a box, complete with theater curtains. Those curtains are apparently mighty tasty.
I hope all of your things go well, even if they are not going well at all. May they go really well for not going well if that is the case.
Sunday, February 4, 2024
February 4: Birthday Celebrations Galore
Sarah has a life-changing new skill: swallowing pills! For the past many years, twice a day, she has opened six capsules of an anti-seizure medication to sprinkle on a small serving of yogurt. When we travel this means I always need to obtain yogurt or a similar vehicle for the tiny balls Topiramate. One evening this week as Sarah was about to do her capsules, I saw an image of her swallowing them instead. I casually suggested the possibility, and she did it! There was no learning process. She just knew how to do it and did it. No more yogurt as a vehicle. No more tiny balls of medication pinging over the table as they miss the yogurt dish. This shaves minutes off of Sarah’s breakfast-eating time, which really helps on school mornings.
Sarah’s week was filled with more birthday celebrations. On Wednesday night we had pizza and cake with our local family members, and then last night we went to Max’s Allegheny Tavern for a dance party and German food with friends and family. Many of Sarah’s school friends were able to attend and my heart was full. There have been so many times in my life when I feel like a puzzle piece clicks into place. The first time was when I met my own best friends when I was 4 and thought, “Finally, here are the friends I have been looking for.” Another time was in my college dorm hallway talking to Carl before we were officially a couple. Witnessing the kindness and sweetness of Sarah’s classmates, I feel that same clicking feeling of, “Sarah is really at the right place” for school and with a peer group.For Sarah’s cakes and cupcakes I made fondant and decorated it using food coloring and edible markers. She loves tunnels, windshield wipers, red Xes, green arrows, and yellow Xes, so that was the theme for her cakes. She loved them and could have happily looked at them and pointed to her favorite things for many minutes before we served slices. If anyone ever needs a recipe for a delicious vegan, gluten-free cake, I recommend Chocolate Covered Katie’s recipe, but don’t follow the suggestion to add xanthum gum if using gluten-free flour. That makes the batter and result weird. Speaking of windshield wipers though, Carl was able to procure a t-shirt with windshield wipers pictured on the front and that has been one of Sarah's favorite presents. She wants the words “windshield wipers” to be on it too so today she and I will buy some iron-on letters and add them to her shirt.
If you want a great venue for a private party, I highly recommend Max’s tavern. If you want a good time on a Monday, I do not recommend getting a thyroid biopsy. That was my Monday. For a couple of months I have felt like something wasn’t quite right with my thyroid, as if I could feel it physically. After seeing my doctor, I was scheduled for an ultrasound this past Monday morning. They found two nodules and wanted to biopsy one of them right then and there. Of course there was the wait to contact my doctor and get the prescription because we live in a ridiculous society of insurance red tape. Also, who wouldn’t want to wait for an unspecified amount of time for an unpleasant procedure? When it was finally time I was numbed and sampled. I was so tense, filled with fear and adrenaline and holding myself completely still, that after it was done I was a crying, shaking mess. Luckily the next thing on my schedule was exchanging massages with a friend. Instead of an exchange, my friend just worked on me and I can’t imagine a more healing recourse after the trauma of the biopsy. The good news is the biopsy didn’t show anything. The bad news is they didn’t feel that they got quite enough of a sample, so I have to go back in two months for a repeat experience. Except this time I will take something to help me relax and Carl will come with me.
For the rest of Monday I felt rather beat-up and delicate. I needed many good cries. For one of them Sarah came into my room and noticed that I was sad. She immediately came over to rub my shoulders, touch my head, gather my used tissues, and call “Aunt Jaguar” to come help. I have no idea who Aunt Jaguar is, but since Carl was working from home, Sarah returned with Carl Aunt Jaguar, who also listened to my tears. By Tuesday I felt much better.
Sunday, January 28, 2024
January 28: Rehearsals and Ridiculous Car Business
Rehearsals for “All Shook Up" have begun! Last Sunday Sarah and I were at her school for three hours. The first hour was a talk by the director about all of the various nuts and bolts of the show and program ads (required for participation), and rehearsals. The next two hours were a read-through of the whole thing complete with clips of the musical numbers from the broadway show. In hindsight, Sarah and I probably didn’t need to be there for the whole read-through. It did give me a sense of the show as a whole, but I’m not sure how much Sarah absorbed of that. And it was a lot of sitting still and sitting quietly. Since Sarah doesn’t have any lines aside from singing in some of the songs, there wasn’t anything for her to actually do that day. She made it through remarkably well. There were only two times of screaming prone on the floor, and Sarah waited patiently for me to be done each time. . .
Sunday, January 21, 2024
January 21: So Many Snow Days - Sort Of
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.
Sunday, January 14, 2024
January 14: Snow Delays, Sledding, and Schroth
Amy graduated from Schroth therapy!! She still needs to do the exercises at home, but she doesn’t need to go in to the Children’s hospital every week or two to see her physical therapist. This is huge. We are both so happy about it. I like her physical therapist very much, but it is a relief to no longer need to figure out childcare for Sarah for an hour on Wednesday afternoons, because the timing didn’t work well to bring her along to the appointments. Amy is ecstatic that she won’t miss any more science classes or rides home on the bus with her bestie. I am thrilled that I can start seeing some Wednesday afternoon clients or have that time to work on other things. I have a lot of book related tasks that need attention these days.
Sunday, January 7, 2024
January 7: Parties, School, and Being Present
Happy New Year! We celebrated New Year’s Eve at home with two other families. They are families of some of Amy’s best friends so she was not ready for the night to end at midnight. They could have played for many more hours. Meanwhile, Sarah went to bed at her usual 8:30! To pass the time until midnight Amy and her friends created a Bingo game based on events or important things from the year. Whoever won the game then got to tell everyone else to put on items of clothing or costumes from our dress-up bin. It was hilarious, with bunny ears balancing atop hats, and cat-paw mittens shoved onto feet.