October 29: A Very Big Upset and Many Wonderful Moments

We have weather maps and meteorologists to help us predict when storms are brewing. If only we could more fully see such maps for our own selves. On Monday Sarah had an enormous upset at school in the afternoon. It was so enormous the teacher had to write up an incident report and if such a thing recurs we will have to have a meeting with parents and teachers and all support people. Evidently she just really wanted to be done with the day but the day was not done. It was free period so she could have played on her iPad or read a book or done almost anything else she wanted to do. . . except scream, kick off her shoes so they went flying through the air (my guess about what happened because that is how it goes at home), knock over multiple desks, and run out of the room. The teachers were perplexed. I was also perplexed, especially because by the time I was picking her up Monday afternoon her storm had passed and all seemed normal and calm. 

Looking backwards at Sarah’s radar map, maybe it was a combination of many things being different from usual. Although that can happen often, maybe there was something about this time that made it so much harder for her. She had had many big upsets over the weekend, I had been gone for the weekend, she had a slightly stuffy nose, we drove her to school instead of her riding on the bus because we had her IEP meeting at 8am Monday morning, and she was going to have piano over FaceTime instead of in person because of her congestion. On Sunday we had discussed with her how she would go to school with us instead of riding the bus, but on Monday morning she was distraught about this and really wanted to ride the bus. But I had already told the driver not to come and I had let her sleep in. She got over her upset and all seemed fine. Carl wondered if maybe the bus driver is too awesome and that is why she so desperately wanted to get to dismissal, but since I am the one to get her on Mondays that doesn’t explain it. Because clearly I’m not as fun as the bus driver! Carl and I had a good laugh about that. I also wondered if Sarah’s period was imminent but it hasn’t yet started so I don’t think hormones can explain the upset either.

All we know is that we hope it doesn’t happen again. It was startling to be the parents getting the info about our child having dangerous behavior. What?? That is not the story I have in my head about our family. I sincerely hope it was a unique moment. Talking with Anna gave me some good ideas about helping Sarah notice what she is feeling in her smaller moments of stress and helping her find equilibrium on the smaller scale to help her better handle the bigger moments. I have had a couple of times when I helped her thus and I could feel her whole body go from being tense to being relaxed. I have also ordered calm strips which are sensory papers to look at and touch while breathing according to the instructions on the paper. I am considering a calming weighted stuffed animal but she isn’t much of a stuffed animal kiddo so I’m not sure about it helping. Her teacher immediately placed an order for a hammock seat that was in Sarah’s classroom last year and that she found soothing. I love that her teacher acted in that way, seeking to help rather than to punish. Her teacher also called me and said she would talk to last year’s teacher and that she remembered something about a nickel system…? Nooooooo!! I nixed that right away, explaining that any mention of using a nickel chart would be traumatic. 

Anna talked with Sarah about the big upset and drew comics about it with the character of Pretty Tiger representing Sarah. There is also a page about times when Sarah gets upset on a regular basis, although we may need to add one about when Amy uses the bathroom. Sarah did her own version of many of the pictures and the whole thing seems like a wonderful way of honoring her experience and processing her feelings. 

On the plus side of all of this, now I often feel grateful and excited for Sarah’s small moments of upset because, if I have the time, they are great opportunities to practice helping Sarah notice herself and calm herself. 

The actual weather all week was beautiful and warm. When Sarah came home on Tuesday she wanted to stay in her uniform and leave immediately to walk to the eye doctor’s to have her glasses tightened. We had a wonderful and relaxed walk, arriving a mere twelve minutes before the place closed because I forgot they close at 4 on Tuesdays! Thursday was a day for immediate snuggles while Sarah sat on my lap and gave me chin presses for at least half an hour. Whenever I have the time for that I figure it is also a good way for Sarah to regulate her nervous system. 

I had an idea a few weeks ago of helping the girls clean one area of their room with the plan being that then every day moving forward they would keep it clean on their own. This has really worked well with Sarah and the clothes that so often decorated her floor. She now puts things away or in her hamper immediately with minimal reminders. Amy’s area is her desk and that has been going relatively well too. My area is the kitchen and that has not worked quite as flawlessly, but that is ok too. 

We got good news on Friday when we saw Amy’s orthopedic doctor. She probably will only have to wear the brace for another 12-24 months. We had thought she would have to wear it for two years after getting her period, which hasn’t started yet. Since I was quite late compared to my peers for starting my period, we were concerned that Amy would have a very long brace timeline. But, the doctor said he sees signs that her bones are maturing and that not everyone follows the pattern of stopping growing two years after their menarche. 

Amy also had a very exciting Thursday night out when she went with her uncle to a cat cafe. We thought the cats would be in costume, but as one might expect, not many wanted to keep wearing their costumes. Amy and her uncle wore cat paws, drew whiskers and cat noses on their own faces, and wore cat ears. Amy came home happy and covered in cat hair. The next day Amy donned lots of pink and blue makeup to be Laguna from Monster High and regaled us with Laguna’s song. Amy’s artistic abilities gallop apace on paper and on her own person.

Friday night was wonderful for all of us because our beloved sitter and past Sarah-Rise volunteer Sc came to babysit. Carl and I went out to have a fancy dinner and the girls and Sc made cake pops. The pops are delicious but don’t look quite as much like pumpkins on a stick as we all imagined in our heads. Also, the white chocolate chips behaved oddly after the food coloring was added. When they attempted to reheat the mixture in the microwave it hardened into a rock. We couldn’t use my double boiler because we have an induction stove and my double boiler is glass, so the microwave seemed like the best option. While the chocolate didn’t quite work out as anticipated, Sarah can’t wait to tell her bus driver about it! I love how much she loves her driver. He is one of her favorite people and I can tell he delights in her as well. 

Sarah has been wanting a copy of Rhinocerous Tap, another Sandra Boynton book that we used to have but gave away in one of our Great Book Sorts. I ordered a copy and it arrived on Monday but I didn’t give it to her then. I didn’t want it to seem like a reward for the big upset nor did I want her to be so invested in looking at the book that getting ready for swimming would be derailed. I waited until Friday and she was so excited to see it that she started paging through to find Turkey Love Song before even removing her backpack. 

We wrapped up our day yesterday with pumpkin carving and watching It’s The Great Pumpkin Charlie Brown. Pumpkin carving wouldn’t be complete without Amy being grossed out by pumpkin innards and last night didn’t disappoint. She made some great faces while scooping her pumpkin clean before turning it into her siren-o-latern. Carl carved a bat, Sarah did her requisite musical notes, and I cut out stars and a moon. 

Now I leave you with Sarah’s latest rendition of a well-known tune, “Yankee Doodle when to town riding on a turkey, stuck a feather in his turkey and called it spaghetti.”

October 22: Slides, Zooms, and Processing Upsets

Last Sunday we had a wonderful time at Simmon’s farm, our traditional spot for play and pumpkins. Two of Amy’s friends were there too, and we were lucky that it didn’t rain. After our requisite chocolate covered pretzels to eat on the hay ride, Sarah made a bee line for a giant slide. She grabbed an inner tube and got in line. I stood with her and helped push her to get her started. That was a scary moment for me because I was pushing the inner tube from a flat place to a very steep drop. I was sure she would immediately fall out and get hurt. I nearly made her get out. But I didn’t. I pushed past my fear and pushed her over the edge and she raced safely to the bottom. She loved it. She did one more ride and then spent many minutes watching other people slide down. Amy and her friends also went down the big slide and did many other activities. Just before it was time to pick our pumpkins, Sarah got in the big fire truck. In past years that was always her first stop and this time I had to ask if she wanted to do it. 

Another highlight of the week was learning that Amy is probably going to be done going to Schroth therapy in a week or two. She has learned all of the exercises. She will still have to do them at home daily for who knows how long. But we will get our Wednesday afternoons back! She won’t have to miss half of her science class and I can start seeing clients at 4:30. And I won’t have to find care for Sarah from 3-4 every Wednesday! 

Thursday evening Amy had her first Higgy Bears zoom. Higgy Bears is a group for kids with scoliosis. There is going to be a local group for in-person gatherings but nothing has happened yet. Amy loved the zoom and already wants to go to the national conference in the summer. Luckily it is a different weekend from the conference for those with Sarah’s diagnosis. Each kid now gets to the star of the family for a conference. 

Carl had a very rough few days with a stomach bug, but luckily was on the mend enough for me to head to Delaware on Thursday. My dad had his right hip replaced, so now we match. I’m so glad to be here helping during the recovery phase. I’m also stunned in retrospect by how little I was instructed to do after my surgery compared to the detailed instructions my dad received about ice and movement. I was not told to move a certain amount each hour nor how often to ice. I wonder if I would have recovered faster if I had. My dad is doing wonderfully, considering that he had major surgery. He came home the same day of the surgery and is healing well. It has been lovely spending so much time together. I have also gotten time with my stepmom, brother, and uncle. The biggest surprise though was that the cat spent two minutes on my lap! This is a cat we usually barely glimpse during family visits with the kids. 

Carl’s dad helped make all of this travel possible by meeting Sarah’s bus and hanging out with the kids on Thursday and for part of Friday. Friday was also the evening of the fall festival at Amy’s school. She went with her bestie since Sarah didn’t want to go and stayed home with Carl. After that they had a late dinner, a huge Sarah-Carl upset (extremely rare), an emotional recovery phase, and then went to the mountain house. The upsets with Sarah can escalate so rapidly over something seemingly tiny and with no real clues ahead of time. I’m sure there are clues that she is somewhat stressed but sometimes those same clues do not portend disaster. 

Carl said that they had a really good day yesterday with delicious food that he made, naps, legos, guitar playing, ping pong, listening to music, chatting, and fearleading (cheerleading for monsters). He said Sarah kept talking about her big upset from Fridayand connecting it to something that happened to Olivia the Pig. It started with Sarah being Olivia the Pig in Timeout, along with tears, but as Sarah processed things it turned to her usual glee about someone being sad because things have gone awry. 

Lots of love to all of you. May you turn your upsets to glee and celebrate yourself for persevering through struggles.

October 15: Unusual School Weeks

Sarah was living her best life this past week because every day was a dress-down day with a special theme. Monday was “dress like a celebrity. . . or . . . dress like someone.” Sarah opted to dress as a music teacher, wearing musical notes head to toe including her musical note cardigan that was a present from her piano teacher. Tuesday was pajama day, and Sarah wore her flannel musical note pajamas. Normally when she gets home and I ask her how her day was she says, “good.” On Tuesday her reply was, “Amazing!” I’m sure the donuts they got as a morning treat added to her good day. Wednesday was Wacky Wednesday and Sarah wore a sort of tiger-print shirt with her tiger print pants. Thursday each grade was assigned a color and tenth graders wore blue, which was easy for Sarah to do. Friday was not only a Spirit Day with a pep rally so she could wear her spirit-wear t-shirt to school for the first time, but it was also a Day Away schedule. That means everyone goes to school but they do fun activities with their homeroom and don’t go to any classes.

Amy’s school week was quite short because Monday and Friday were in-service days for teachers so students stayed home. Tuesday was a field-trip to a camp where she got to try archery. So she only had two real days of school. We had a great time on Friday going to lunch at my new favorite restaurant and then shopping for new dresses so she has something for an upcoming wedding. Before we went shopping she tried on the dresses in her closet and we shared many belly laughs as we realized just how small some of her dresses have gotten as she has grown. We went to Once Upon A Child, which is one of our favorite thrift stores, and found several dresses that actually fit her, size 16 being the way to fit my tall 12 year old. Then we traipsed all over the mall in search of dress shoes. It is nearly impossible, at least in a mall, to find flats with a strap so they don’t come off too easily. We finally found one option in JC Penny but by then Amy was feeling sad and mad and looking like a wilted plant. She was not happy that the only option was plain black. I felt victorious that we even found anything. On the drive home I asked what she would design if she could have her dream shoe. She started talking about glitter and we realized that maybe she could decorate the plain black shoes with glitter glue to make them more Amy-ish. Amy has been decorating her face in ever more complex ways in preparation for Halloween. I’m happy to provide her with various eye liners and multipurpose face color sticks so she can explore her art with her own personal canvas. I’m sure she can also create some amazing shoes if we can find the right materials. 

At the thrift store Amy and I also found the Sandra Boynton board book Doggies. Most mornings while Sarah eats breakfast she looks at the back of a Boyton board book that has pictures of other books and talks about the ones we used to have or didn’t have when she was younger. We never had Doggies. When I gave it to her I realized why she was actually excited to have more Boyton books. She informed me that now she has 4 books with a picture of Blue Hat Green Hat on the back cover! 

Yesterday I got to visit with one of my original Alexander Technique instructors who trained me to be a teacher. I hadn’t seen her in maybe 14 or 15 years! It was so wonderful to be together again for a few hours, almost as if no time had passed since we last saw each other. After that I had my usual monthly AT class with my Pittsburgh mentor and she noticed some fine details about how I hold my right leg for sitting and standing that is different from how my left leg is positioned. I’m hopeful that this may be one of the missing pieces to helping me walk comfortably all the time. Every time I study with other Alexander Teachers it makes me love the work even more. I’m in awe of the incredibly detailed observational skills of my mentor and how much she understands how we are designed to function and can notice when one toe might be throwing things out of alignment. 

Last night, despite the constant misting rain and the chilly temperatures, we bundled up and went to the football game at Sarah’s high school. This was the first high school football game I’ve ever attended in my life since my high school didn’t have a football team. In contrast, Carl used to play high school football so had lots of memories. We sat on blankets so we didn’t get wet butts, snuggled into our winter coats and wearing hats and gloves and double layers of pants. I held an umbrella over Sarah at her request, though it did nothing to stop the mist that was blowing into our faces. Amy’s favorite part of the whole experience was watching the cheerleaders. The half-time show was impressive with the school bands and cheerleaders. Sarah’s school had a much stronger football team but the other school had a bigger and more impressive band. We left after the half-time show, appreciating being warm and dry, but glad we went to the game for a bit. 

For the past few months I have been the one to read to Amy before bed and Carl has been the one to tuck Sarah in. We usually switch roles every few months. Though Amy and I haven’t finished our book, I wanted Carl to start reading to her from a version of the Odyssey written for kids. For Halloween Amy is going as a siren so I wanted her to have more context for one of the most important references to sirens in literature. As I tucked Sarah in she asked me to tell her the story of Little Red Riding Hood. Imagine the inside of my brain pausing in shock. My eyes were wide, all the better to see her, and my ears felt large, all the better to hear her! I almost thought she was joking in some way. But as I started tell the story, she was attentive. I did my best, appreciating how some stories can stick in ones head forever - or at least some lines from them. And then she went to bed. 

October 8: Hard Moments and Surprising Shoe Work

Sarah went to work! Part of her school program now includes one day a week of going to a job with a teacher and some other students from the St. Anthony Program. Sarah started her job on Monday, going to a seminary that is near her school. She helped empty trash cans, wipe door knobs, and clean tables. When I asked her if she liked it she said no, but not with any further explanation. I decided not to inquire further. 

The pool was finally open so Sarah had her swim lesson and Amy and I had our time in the water too. The pool had been closed for weeks for repairs so that may be the reason that on the first day of reopening there were no lane dividers. It was very strange to be in a huge pool with no divisions and yet to swim laps. Amy swam here, there, and everywhere, enjoying her wide open freedom.

Overall my week felt spacious and relaxed and included a delicious brunch with one of my best friends. The timing of an open day and brunch with a friend Friday was particularly helpful given what I learned Thursday evening. One of my high school classmates died after being robbed and stabbed. While I hadn’t spoken to him or had any connection aside from Facebook since we graduated, I am still reeling and feel off balance. He is the first of my high school class to die so that throws the whole issue of mortality to the forefront, where I prefer it not to be. It's such a painful way to die and I keep wondering what those last moments were like for him. At first I cried hard while Amy and Carl snuggled against me (Sarah was already in bed), and then . . . then I went about the rest of my life. As one does. This whole business of how life keeps going even when it stops tragically for one person or family baffles me. I have had many wonderful, happy, laugh-filled moments. And then I will suddenly think of this classmate and feel so sad and stunned. 

While Sarah and I are perfectly capable of having tough moments without an excuse, I would like to think that maybe my intermittent stunned sadness was partially to blame for my not having the space to handle things well yesterday regarding Sarah. Amy, Sarah, and I were with some good friends at Idlewild, trick-or-treating in the Storybook Forest. It was chilly but otherwise beautiful. Amy was a siren (as in a mermaid and the reason Odysseus tied himself to the mast), Sarah was the elephant from Blue Hat, Green Hat, and I was the bear from that same book. Anna led the production of Sarah’s costume so it is phenomenal. We had a fun time and then had a car picnic with our friends in their car to be warm while we ate. The plan was to then use the bathroom and explore the rest of the park. Sarah and I drove separately so we could leave when she wanted to. Unfortunately, we learned that the giant ball pit was not available anymore. Why do amusement parks keep getting rid of the few things that Sarah loves?! Sarah decided right after lunch that she wanted to go home. I said that was fine and we could after we used the bathroom because it’s an hour drive to get home. I wanted her to keep her wristband on in case she saw something she wanted to do near the restroom. She proceeded to remove the wristband as I was strongly requesting that she keep it on for a few more minutes. I felt mad and told her I was mad. That was a mistake. She then screamed and things when downhill quickly, with her throwing herself on the ground and kicking off her shoe. I was panicking about this happening in a parking lot and just wanted it to stop. Within a couple of minutes we were in our car and I decided we would just hold our pee and drive home. We both cried about the clash with each other. We both apologized. We had good times later in the day. But still. I am always embarrassed when I so quickly turn into a tight mean parent unable to respond gracefully, especially when in hindsight the initial problem was not really a problem. It was more about the idea of being blatantly not listened to. Energetically and emotionally I feel like I ran a race and still need to recover. 

Carl was away yesterday for a rowing race and then driving to a location in preparation for a bike race today. So Sarah and I get a lot of time together, which can be wonderful, but also sometimes I don’t want to hear the usual few statements again and again and again and again. And despite feeling like I should be love incarnate because life is short, instead I feel like I have less emotional space to be present and delight in her. In these moments I try to simplify my next steps. Maybe get some water to drink, make sure I am not hungry, pee, read a fun book, do a crossword, or nap. Also, to put it in perspective, maybe it’s ok that after an hour or two of focus and delight, I want a break.

This week I did an experiment with our front room. I didn’t put away anyone’s shoes except my own. A messy pile accumulated from the shoes of the three people with whom I reside. And then this morning, Sarah put away most of the shoes! All of her own initiative, saying she wanted to help clean the front room!! Somehow I hadn’t expected her to be the one to get tired of the mess first, as her room is often covered in piles of stuff. I love it when she surprises me like this.

October 1: Were Things Stressful? Or Did I Feel Stressed? Language Matters

I’ve been thinking about the impact of language. I can tell you that Monday was stressful or I can tell you that I felt stressed on Monday. If I say the day was stressful that doesn’t give me much agency were the same things to recur. But, if I say I felt stressed then that leaves open a possibility of responding differently in the future. So. . . I felt stressed on Monday! Some of that was due to managing a multitude of slightly moving parts that all had to happen and figuring out the optimal order. Some of it was perhaps due to too many things on that list. Some of it was due to feeling bad and responsible about an error that occurred that was not actually my fault and I couldn’t fix it anyway. Timing felt tight. And all of that was before Amy called me in tears because she had a screw head lodged in her heel! I was about to drop Sarah off for her piano lesson when Amy called. Normally I wait in the car or walk around the block for half an hour while Sarah has her lesson. This time I called our neighbor who lives half a block away from us and is the dad of Amy’s bestie. Before I had finished saying what had happened he was putting on his shoes to head to our house. I left Sarah with her piano teacher and was home in less than fifteen minutes. As soon as I saw Amy’s foot I knew we needed to go to Urgent Care. So our neighbor helped me get Amy into the car so she and I could get Sarah. 

Sarah and I took Amy to Urgent Care, but as I was helping Amy hop towards the door, another family came out of the building and said it was so packed there wasn’t even a place to sit. Another person in the parking lot suggested we go to an emergency room. Ten minutes later we parked at the Children’s Hospital. As we hopped our way towards the elevator, another parent saw us and brought a wheelchair. Sarah happily helped push the wheelchair and everyone was kind and helpful. The whole process took a couple of hours because they wanted to X-ray Amy’s foot before doing anything. And everyone asked if she was up to date on her shots. Every time they asked I explained that she was and that I could log into her account to get the specifics. . .  or they could access her records because her pediatrician is within the same overall system. 

How did a screw come to reside in Amy’s heel you ask? You know those little metal floor plates where double doors might meet in a house’s interior? One of those little metal floor plates was slightly loose and the screws occasionally snagged a passing sock. On Monday afternoon Amy passed that place but wasn’t wearing socks so the slightly loose screw snagged her heel. As she walked the screw stayed with her since the screw head had gotten under the skin. The injury wasn’t deep but nor was it something I wanted to handle by myself. There is a reason I am not a nurse or a doctor. Anyway, Amy handled the whole thing extremely well. She had to hop upstairs to get her ipod to call me in the first place. Once we were heading towards people who could fix the situation she was calm and it wasn’t hurting anymore. She even helped keep Sarah calm when Sarah reached a temporary limit with waiting in the ER. Amy happily went to school the next day, keeping her weight off of her heel but otherwise walking normally. She still keeps her heel elevated when barefoot but can walk with her heel down if she wears sneakers. 

I felt more relaxed the other days of the week. They were less intensely packed and there were no injuries. Aside from the fact that once we got home from the hospital Monday night my right thigh started aching deeply in a way usually reserved for the moments after balancing on that leg for a while. I assumed it was from my extra stress and that it would clear up. Tuesday evening it was still hurting and I could tell the muscles were extremely tight. So I decided to use my foam roller, steering myself over it with my left leg. When I got up from that my left knee suddenly started hurting in the way it sometimes does. It’s an intense hurt when it happens. So I was quite gimpy and limpy. I didn’t see my trainer on Wednesday, feeling like I needed to rest. By yesterday morning my left knee was fine but my right thigh ached so much that I couldn’t really walk well. I went to my chiropractor and was pleased to know my atlas (top vertebrae) was out of alignment. That was fixed and I rested and went home. While my leg isn’t a hundred percent better it is much better than before. 

But to back up slightly, on Friday morning just as I was about to leave to see a client, I got a call from Sarah’s teacher. Sarah wasn’t feeling well and I needed to bring her home. After talking with her a lot I think I understand that she had been talking in Religion class. When she was told to be quiet she then stomped her feet. Her helper told her to stop or she would get kicked out of class. Oh no!! That was an attempt to get Sarah’s attention and get good behavior, but it backfired. I am so aware of that dynamic as I have been part of it too many times to count, threatening something out of desperation to get Sarah’s attention and cooperation, but inadvertently escalating the whole situation and inducing panic and big feelings in Sarah. Sarah cried to her teacher she didn’t feel well and had a headache. Once we were home she did sleep for the better part of six hours, and then felt much better. So, I think she was worn out and had a low personal battery that day which maybe led to her having a harder time being told to stop certain things. And, it also didn’t help to be told she might get kicked out of class. I have communicated with her teacher about all of this, suggesting that in the future one could ask Sarah if she needs a break and if she wants to step out of the class for a moment. That gets the same result but with a different perspective. Carl also spoke with Sarah a lot about how she could tell her teachers if she is feeling overwhelmed and needs a break. 

Over dinners this week we have had many conversations about the moments when the rest of us got in trouble or were reprimanded by teachers and how we felt. Mom-Mom and Pop-Pop added their stories during the zoom with the girls yesterday morning. I hope this has helped Sarah feel supported and that all of us can relate to her feelings. If any of you have stories you would like to share with Sarah, particularly if you had big feelings, you can send them to me (the stories and the feelings).

Although I felt stressed about many things during the week, I also felt extremely well cared for and supported by friends, family, and strangers. So many people were helpful and thoughtful. I had told Sarah’s bus driver she wouldn’t be on the bus Friday afternoon because of not feeling well. He sent me a text that evening just to see how she was doing! And I feel teary when I think about how our neighbor rushed to Amy’s aid. It is priceless to have friends who can be surrogate parents in an emergency.

Sarah has delightedly recited Moo Baa Lalala by Sandra Boyton at top volume, even though we no longer even have a copy of the book. She also continues to love reciting parts of Blue Hat Green Hat also by Boynton. Yesterday she got out her guitar and made up a Blue Hat Green Hat song. I love how she and Amy both dive into their loves so passionately. 

Lots of love to you all. May you feel your feelings fully, whatever they may be.