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. . . 

Of course it was actually her on the floor, but those moments didn’t actually last long even if they felt like it to me. Within about five minutes she regrouped and was ready to go on. Luckily those moments, while possibly heard by the director and other students, weren’t seen. It was a good learning experience for me to realize that she can totally hit her limit and it doesn’t mean we have to abandon ship. It means she needs five minutes. That is what I have explained to others but can sometimes forget myself. 

I had told the director ahead of time that at the beginning of rehearsals sometimes Sarah can have times of overwhelm and big feelings including screaming because everything is new, but to not make assumptions based on those first times about how the whole thing will go. Similarly, when all of the cast members went around giving introductions, I spoke for Sarah because she was feeling a bit overwhelmed. I shared that she had been in Peter Pan, Jr, and High School Musical, Jr. and to please not worry based on the first day about how the whole thing would go. The first day can feel like a lot. 

Oh, and when Sarah was sitting on my lap at one point and reached to put down her binder, we both tipped over onto the floor. This was in full view of everyone. That was a stellar moment and I wanted to be swallowed up by the floor. Instead, we righted ourselves and I just closed my eyes and rested my head on Sarah’s back. 

The next two rehearsals were weekday evenings so Sarah and I took naps as soon as she got home from school, had an early dinner, and went to her school. Those rehearsals went much more smoothly because they were learning the songs and some of the scene blocking. Sarah told me she didn’t want me sitting next to her on the bench so I sat to the side of the room. While we need to practice word clarity (and that may come in time anyway), I could hear her singing on pitch. For the times when she is supposed to get up or sit down, she did so. I was so impressed watching her be mostly quiet or participating and attentive for the better part of two and a half hours. There were a couple of moments the first night when she wanted to be done, but those upsets were smaller and we made it through. 

Sarah had a mix of school days that were great and others that were challenging. Apparently she has a harder day when her lead teacher isn’t there, which is the same as it was at her previous school. On one of her hard days, she had to eat lunch in her resource room instead of the cafeteria because she didn’t stop putting a pencil up her nose. Oh dear. But that is also sort of hilarious. On one of her great days, she worked at the school coffee shop and made sure tumblers were full of ice for making smoothies. 

While there may be times where Sarah seems on the younger side of things and sticks a pencil up her nose, she has also been seeming more grown up, which is fitting for one about to turn seventeen. She clearly, calmly, and politely told me she doesn’t like it when I tell her to get more soap for handwashing and she doesn’t like it when I nudge her (verbally) about getting ready in the morning. She also wanted to start using her alarm to get up in the morning. That is all exciting and wonderful. And it is tricky to figure out how to step back from my nudges but still have her get ready in time without getting distracted. Our first morning of trying to do things differently was a disaster and I was more tense than ever and so was she. Carl pointed out that this is a normal phase when you are trying something new. Anyway, the second day went more smoothly. I still needed to be in her room talking to her to get her to get out of bed. When her alarm went off she didn’t get out of bed to turn it off. She just called for me repeatedly to tell me that her morning sound was going off. I did set a timer on my phone during breakfast so I could just point to that instead of telling her how much time was left. That did seem to work. 

Amy’s MAPS tests went well enough and she enjoyed extra playdates since we didn’t have swimming (because of Sarah’s rehearsal) and her art class hasn’t started yet. For one playdate she and her friend sat on large bouncy balls that were wrapped in blankets that then tied over their own legs and they race bounced around our downstairs on their giant bouncy butts. Amy also dressed as a Victorian vampire as a test run for a possible Halloween costume. She feels like she is late in deciding what to be for Halloween!

Carl and I had rather stressful weeks, but we made it through, and had a night out last night with his family while Sarah and Amy were at Anna’s for Sarah’s birthday bash sleepover. This morning we will go out for a breakfast date. 

My week felt ridiculous in terms of car stuff. I took my car to the dealer for a two hour software update on Monday and sat there working on my laptop while it happened. Except that after three hours it wasn’t done. So they gave me a loaner car and sent me on my way. The update would apparently take six hours, but then there was a glitch and they had to contact the company. So I didn’t know when I would get my car back. For most people with a loaner car this wouldn’t be a big deal, but my car had an appointment Friday to get snow tires at a different location! Luckily I was able to get my car Thursday night on the way to rehearsal. Friday I took it in for snow tires… and it turns out we didn’t get the right size shipped from Tirerack, despite Carl talking extensively to the tire people to make sure we got the right thing. So now I need to make another tire appointment. 

Yesterday Carl played guitar and sang the windshield wiper song with Sarah. It is a song they made up because of her love of windshield wipers. When we dropped the girls off for the sleepover, Anna had streamers with pictures of windshield wipers, red Xs, green arrows, stop signs, and zzz trip - all things she loves about her bus rides.

Anyway, I hope your weeks and windshield wipers are going well.

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. 

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.

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.

Amy has started wearing her scoliosis brace over her regular shirt so if she isn’t wearing a sweater then it’s not hidden at all. I love that she is this emotionally comfortable with it in general and especially at school. I think it has really helped to attend the Higgy events and zooms for kids with scoliosis. She also charts how much she wears the brace and that has meant I don’t need to remind her to put it on after she takes a break. I still remind her to do her Scroth, but she has gotten much speedier with that, timing the intervals between each exercise so the whole thing doesn’t take an hour. 

This week, every morning when Sarah waited for her bus she did a verbal adaptation of Dinosaur vs the Potty by Bob Shea. Shea has several dinosaur books where it is the dinosaur vs something and involves lots of roaring interspersed with things related to the title. Sarah said “Dinosaur vs waiting for the bus” and interspersed her roars with various sentences about what she was doing. I wish I had recorded her but I was too busy laughing. Mainly her activities were exercise related, either with a large exercise ball or doing her version of gymnastics. 

Tuesday’s bus situation was delayed because of the weather. When I woke I could hear the frozen precipitation hitting the windows so the first thing I did was check the news website for the list of school closures. At 5am there were 4 schools listed as delayed by 2 hours. Over the next couple of hours over 220 schools were added to the list. I got a text from Sarah’s school announcing the delay right as she was about to get dressed in her uniform. I contacted her driver, figuring he might be half way to our house by then. He wasn’t, but he was glad to get my update since he had not yet been notified. Amy’s school followed suit a bit later. Unfortunately, Amy’s driver was extra late because of going back to pick up two kids who had missed the bus, while simultaneously sending the Facebook message group of parents a reminder that if kids miss the bus then their parents need to drive them. Um? If that is the case then why did the driver go back to get those kids? On the one hand you can see that as nice. On the other, you can realize that that meant Amy and her bestie were waiting for half an hour in the snowy/rainy cold and wondering if their bus was actually coming. They were about to give up and contact their own parents for a ride when the bus finally arrived. 

I am yet again a genius in a small way regarding making hydration a game for Sarah. One of the movies she likes to watch is Baby Babble 2 and it has many transitions between scenes. I suggested that she take a drink of water every time there is a transition. Not only does she do this, but she often repeats her favorite scenes thus getting extra sips. 

This weekend Carl’s cousin and her family are visiting and enjoyed playing The Fairy Game with us. That is the cooperative board game that I turned into a drinking game, where everyone has some of their water when the Old Man Winter card is drawn.Yesterday despite the cold and wind, a good time was had by all sledding, followed later by a snowy nighttime exploration which Sarah deemed “hunting for the night bear.” Amy and one cousin made good use of my new shark blanket-bag thing, hopping around in it together so it really looks like a shark has eaten one or both of them. 

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. 

It was a short school week with Sarah starting Wednesday and Amy starting Thursday. Amy used her few days before school started to finish her graphic novel pages based on chapters from How I Became a Ghost, which her class read. It is about the Trail of Tears. Amy was upset with herself for not spreading the work out more over winter break because then she could have done a panel a night instead of having to spend the better part of two days making many panels per day. That said, she got it done and her work was beautiful.

Sarah had a difficult time in art class on Thursday, being asked thrice by her teacher to stop what she was doing, and eventually being taken out of the class early. What was she doing? Putting charcoal on her face. For some reason that cracks me up. I understand the bigger point is that they want her to respond the first time they ask her to do or not do something. I feel the same way. And yet, at home it is not uncommon for Sarah and Amy to decorate their faces, especially if one wants to have stripes like a tiger. Or, maybe it started with Sarah wanting to decorate her face but when asked to stop she doubled down, as can happen at home. For the rest of the art project they will have her use different materials instead of charcoal. 

Thursday afternoon we had our customary dentist appointment field trip where the girls and I all had appointments one right after the other. As we were sitting in the waiting room, Sarah’s kindergarten teacher walked out, having finished her dentist appointment! The teacher and I did a double take after the initial polite hellos of strangers in a waiting room. It has been about 8 years since we have seen her, but she recognized us. And Sarah recognized her right away. We have often seen friends when we go to the orthodontist but this is the first time our social meeting area was at the dentist. 

Carl was away for a business trip for a few days which meant that Sarah slept in my bed. In the past it has worked to tuck her in, finish cleaning the kitchen or whatever else I want to do downstairs and then going to bed at my normal time. This time Sarah wouldn’t go to bed without me so one night she started helping me clean the kitchen so I could be ready for bed earlier. 

Now I am the one away for a short trip so I wasn’t at home yesterday when it snowed. At one point Carl wondered where Sarah was. Then he heard a scraping noise and went to investigate. Sarah was outside and had shoveled nearly our entire sidewalk! Later she initiated standing on the dining room windowsill and was quickly joined by Amy. The window frames point out how much taller Amy is than Sarah because she has to scrunch to be contained by the window, whereas Sarah has window room above her head.

Lastly, there was one morning when I nudged myself to be more present with Sarah as she was repeating the usual things she likes to say. I reminded myself of how wonderful it was to have time with her and just felt a lot of love for her whole being. As I became more aligned with that energy and way of being in myself, she suddenly looked at me with more sparkly presence in her own eyes. It was a good reminder of how I want to be more often and that Sarah can feel it without my saying a word. 

December 31: Snorkeling

Our plan, whenever going somewhere sandy, is to spend time at the beach and the pool, the beach and the pool, the beach and the pool. Our trip to St. Thomas worked beautifully for that plan. We also had the added bonus of having Mom-Mom and Pop-Pop with us too! We stayed at a place where my parents had taken me when I was in high school and college, including one year with Carl joining us. Impossibly, that was 25 or 26 years ago!

We had gotten snorkel masks and tubes ahead of time so the girls could practice during our weekly swim time when Sarah had her lesson. When we got to the island we rented flippers and one life vest for Sarah to wear. It took Sarah some time of easing in slowly to get comfortable. Amy was at home immediately like the mermaid she is. I used to be an anxious snorkeler but was much more comfortable this time. We even went on a snorkel cruise. The captain suggested having Sarah hold onto a life ring that the captain pulled through the water. That worked to get Sarah really comfortable with the whole thing. By the end she was snorkeling independently, still in her life vest. She would have stayed in the water as long as time would allow. Amy sometimes got cold so if we do such a trip again I think we should get her a wetsuit to keep her insulated. 

Amy was delighted to discover many cats wondering around the property. A black cat named Midnight even let Amy pet it and give it snuggles. 

We celebrated Christmas with stockings and a very small present exchange with Mom-Mom and Pop-Pop, plus Pillsbury cinnamon rolls as is my family tradition.

We loved the tiny lizards scampering everywhere and were lucky enough to see four iguanas. One day we went to a different beach and Sarah rocked out to the live band. We also watched the Straight No Chaser livestream concert and Sarah pretended to have a microphone to sing with them. 

After our time on the island we flew to Philly so we could spend time with Grammy and Granddad and my brother and uncle. Much fun was had playing the new Atari system I got for Carl. It was his idea so perhaps it’s not a surprise that we each bought each other the same game! Cosmic Ark was my favorite back in the day and we each got it for the other. Sarah has been missing everyone, but especially Granddad, a lot since getting home so hopefully we can have more family visits soon.

December 24: No More Goodnight Moon

I turned a game that Carl got for the girls into a drinking game. They don’t know that adults often play drinking games. What they know is that when we play The Fairy Game, a cooperative endeavor to save a garden, if someone draws an Old Man Winter card then everyone takes a drink of water. Keeping everyone hydrated is no easy task so clearly I just need to have us play the game daily. 

Sarah’s usual pattern with books is to love a book intensely and look at it all the time for weeks or months and then suddenly decide she is done with it and it needs to live in her closet or be given away. After years of loving Goodnight Moon and constantly wearing Goodnight Moon socks, she is done! She wants to give the book away and she actually thinks that I did already. What I did was hide it in the basement to await a change of heart. If she never wants it again that is fine but I learned my lesson after buying Brown Bear, Brown Bear, What Do You See? multiple times. Sarah has also started wearing all of her other sock patterns. 

When she came home from her last day of school before winter break, Sarah walked in the door and burst into tears. She was so sad that she has to wait two weeks to see her bus driver again. She sat on my lap for half an hour crying and talking about her feelings. She only got up and took off her coat and shoes when Anna arrived, but then continued processing her feelings. She has been similarly sad after most of her naps lately, as if remembering anew that she has to wait to see her best bud. 

Amy worked her tail off doing homework before winter break. She still has one project that is due when she returns in January that involves making pages of a graphic novel to go with a book the class read. It’s not something she wants to rush, and I’m incredibly impressed with her work. I’m not surprised by her ability but I’m ever impressed with her increasing skill. 

After much deliberation and with input from my publisher, I have a new title for my book. In January 2025 you can look for Watching Sarah Rise: A Journey of Thriving with Autism. It is astonishing how much effort and debate went into the process of finding a simple title that everyone was happy with and that conveyed enough about the subject matter. 

December 17: Gingerbread and Board Books

Last Sunday the girls and I made gingerbread cookies, and I marveled over how little they need my help with it anymore. I still put the trays in the oven and take them out, but that is largely because Sarah and Amy are busy rolling, cutting, and decorating their dough. Amy mostly used cookie cutters but she did go beyond that when she made a scoliosis brace cookie. Sarah mostly made musical whole notes with a circular cookie cutter, but she also made some notes just by rolling and pressing  the dough in her hands. I made the large cookies that comprise the walls and roof for a gingerbread house, which they decorated on Tuesday. The house is so large that it needs a day or two for the frosting to dry so that the pieces are stable and can withstand the application of many pieces of candy.

Amy had another follow-up appointment regarding her surgery. While it is absolutely the best case scenario to be told all is well, it did feel frustrating for her to miss some school to go sit and wait for a long time and be seen for all of five minutes, being told exactly what we heard in the follow-up with a different doctor the week before. She then missed the same class at school the next day for her Schroth appointment. It’s been a year of appointments and missed science classes, which is the most terrible thing to miss since it is the one class she has with her bestie.

Sarah went on a field trip with her Resource Room classmates on Thursday. They went to Walmart and a mall and the Olive Garden, with each kid bringing money to pay for their meals and any gifts they purchased for family. When Sarah came home I asked her what she had for lunch and she replied, “Too much.” I think most of us can relate to that feeling after dining at a restaurant! Sarah also told me that she and one other girl watched buses while they were at the Olive Garden. I love knowing she had a bus-watching buddy.

We went swimming as usual on Thursday but Sarah’s teacher unexpectedly didn’t come. Amy offered to hang out with Sarah while I swam, and she coached Sarah on kicking, getting kickboards for both of them to use. When we traded so Amy could swim, Sarah practiced a bit of kicking at the wall with me. The main challenge is to help her keep her knees straight while kicking. 

Yesterday we had a small first Christmas to open gifts that had come from Mom-Mom. The girls were quite surprised and love their new things. Sarah got a musical note watch, which she says she will never take off, and a handful of Sandra Boyton board books. She tells us that now she has eight books with pictures of Blue Hat Green Hat on the back cover! I love that that is why she likes getting more board books. Amy is in love with her new stuffed animals and is rapidly reading Deenie by Judy Blume, about a girl who gets diagnosed with scoliosis. 

One of my adventures this week has been trying to come up with alternative titles for my book, along with subtitles that would give a bit more explanation about the content. It’s tricky to get out of my mental groove after calling it Sarah-Rise forever, but I do have a handful of ideas. I’m waiting for my publisher to respond with feedback so we can finalize whatever the new title will be.