November 25

Last weekend Sarah and Amy had a group piano class. This is a small, informal recital with the other piano students in attendance. Sarah had no interest in the games to get to know the other students. She wanted to play the piano! When it was her turn she announced each piece before she played it. After her originally planned pieces she wanted to keep going! Her teacher had to stop her from just going and going. She probably would have played everything she knew if we let her. We joke that when it is time for her recital we may need a long hook to pull her off the stage. When it was Amy’s turn, Amy had beautiful poise, grace, and presence. I had thought she might be nervous but she wasn’t at all. When she took her bow at the beginning and end, she took her time and made eye contact with her audience. 

Sarah is increasingly interested in helping in the kitchen. Sometimes this works and sometimes it doesn’t. Yesterday she heated left-over mashed cauliflower and mashed sweet potatoes, saying they were mac and cheese, and served them to herself and Amy. Earlier in the week she made scrambled eggs for multiple people for dinner. Carl was the supervisor in both situations. I think he is often a bit more relaxed about Sarah’s kitchen help than I am. 

Sarah loves wearing pajamas and often wants to wear them to school. Her reasoning lately is that they are “comfy cozy comfy cozy.” When Grandma delivered the new pajamas she recently made for the girls (cats for Amy, pandas for Sarah) I kept the pjs hidden until Wednesday after school. I knew that if Sarah had them earlier it would have been impossible to get her dressed for school in the mornings. The girls love the pajamas  and Sarah has worn hers for the better part of the last 82 hours. Hopefully by Tuesday morning she will be willing to part with them for the duration of her school day. 

I think Sarah’s language is getting more fluid and specific, with longer and fuller sentences than she used to use. One morning she explained to me her delay in coming down to breakfast: “I’m getting the snot out of my nose,” and “I am throwing the tissue away in the trash.” Good to know!

Thanksgiving was lovely. We ate lots of good food and had lots of time to play games together. Amy and I played Catopoly to completion. The game is slightly different from Monopoly, but is basically the same. Amy beat me thoroughly.  Sarah even joined for some Catopoly rounds and I realized that adding the total on the dice is a great way for her to practice math. Counting her moves on the board is a great way to count with matching a thing to a number. She is great at counting in general but there isn’t always a one to one correspondence to the items being counted. We also played SET, which is a bit complicated. Carl figured out a simplified, non-competitive version and Sarah was surprisingly interested and adept. SET involves making sets of three cards that have shapes on them. There are diamonds, squiggles, and ovals. They can be purple, red, or green. There are 1, 2, or 3 shapes per card. A given trait must be different on all three cards in a set or it must be the same. For instance, you can have 3 diamond cards in 3 different colors and 3 different numbers or all the same number. It is both easy and complicated. It requires really paying attention and looking at the cards, which are not always Sarah’s strongest skills. Amy found the game super easy at first so she was complaining that it was too easy. Then it became impossibly hard and she wanted no help and nothing to do with the game ever again. So it goes. We all have those moments in various aspects of our lives. I’m sure in the future Amy will be open to trying again. 

We had a couple of walks in the woods on Friday so the girls could skate (in their winter boots) on frozen puddles. They had a great time. Lately it has been impossible to get Sarah out for a walk in the woods and the mere suggestion results in screaming and tears. Once ice skating was involved then our little bear couldn’t get enough of being out in the woods! Until she fell and bumped her elbow in a way that hurt. We took her inside. She was ok but had a lot of feelings about it. She cried for a long time. Then nurse Amy came to play and Sarah was happy and sparkly again, listening to Amy read an Elephant and Piggie book.  

Grandma and Grandpa have been in Pittsburgh often over the past year and I have really loved having them around. My early Christmas present is that Grandpa will be here most of the time from now on. He bought a house that is nearby. Grandma will visit often, but still has work in MN so that will be her home base. I am thrilled that Grandpa will live in Pittsburgh. Last night I was thinking about how lucky I am with the extended family I acquired through Carl. I love my in-laws. All of them. That isn’t to be sneezed at. The girls are thrilled too. Whenever Grandpa arrives, Sarah lights up and zooms over saying “Grandpa!” and then wants to tell him something.

May you feel comfy cozy.

November 18

Yesterday we went as a family to get flu shots. I had debated doing this for a while because I’m always concerned about Sarah’s system not handling it well. She has always been fine, but I think of her body as having more stresses upon it. There are people who come down very definitively on both sides of the vaccine debate. I hover in the middle, believing that some people’s bodies truly aren’t equipped to handle vaccines well so some thoughtful care should be taken. I’m also scared of Sarah getting the flu. When she got sick over Halloween I was scared that I had made a mistake in not getting a flu shot for her. I also read something from a friend about why she got a flu shot. She explained that she wants to help the herd, knowing that some people can’t/shouldn’t get the flu shot so that if those of us who can do so then we protect the herd better. Anyway, off we went. It was a very long wait and a very short procedure. Sarah prepared herself ahead of time by playing nurse with Carl. They gave each other shots and then pretended to get ice cream at Millie’s to recover. When it came time for the actual shot, Sarah scrunched her eyes and said, “thinking happy thoughts! happy thoughts!.” Not a tear or a scream. She handled it beautifully. Amy was scared and crying but handled it no less beautifully. I want to be careful to celebrate accomplishing a task whether or not one had feelings involved. It is ok to have feelings and tears. It doesn’t mean you didn’t do a great job. Of course, we went to Millie’s to celebrate. Millie’s has several vegan options so it is a favorite place for us to go with Sarah, who can’t have dairy.

This week Sarah and Amy had some wonderful play times together. I still pinch myself a bit that this happens so easily and independently. That used to be something I knew other SR families achieved but it was a dream far off if not impossible for us. One evening they donned swim caps and pretended it was safety week, meaning that they kept their clothes on and practiced rescuing each other. Amy also practiced her laps and assisted Sarah with floating. On multiple other occasions they played Chutes and Ladders all they way through, with no adult intervention. This still seems miraculously amazing. For all of the struggles we may still have or the goals that remain seemingly impossible, here we are. We have already achieved so many things that used to seem unattainable. I liken our progress to someone climbing a mountain who refrains from looking down. However, in our case I think I fare much better if I only look down at what we have accomplished rather than letting myself feel despairing about anything we haven’t surpassed.

Mornings with Sarah have been good, though I feel rather blasphemous when I interrupt her latest diversionary tactic: she wants to sit in her bed by the cross (a present from school) on her wall and pray. She recites the Lord’s Prayer, slurring and rushing through the words that feel too complicated, such as “hallowed.” It is adorable. And, it can’t go on forever because there is a bus to ride! Speaking of the bus… Our driver has been wonderfully reliable. Thursday morning the weather was rainy and sometimes icy. The bus was late but I thought that was understandable. When I called to double check I was told that the driver had been at our house at the usual time and was now headed to Sarah’s school. What?! I know I was tired but how could I have missed seeing her bus when I was standing by the front door as I always do? Was I losing my mind?! Or had we been forgotten? This all seemed so implausible. I hadn’t yet gotten dressed and Amy hadn’t had breakfast. I threw on clothes and tossed some goldfish in a bag for Amy’s breakfast of champions. Off we went, delivering Sarah just a couple of minutes late. Meanwhile, my original plan for the day had included taking Amy to a friend’s house so they could walk her to school while I went to an annual checkup with my headache doctor. Instead, I dropped Amy off with minutes to spare before her school started (after we went to Dunkin Donuts for her second breakfast) and then walked in the door at my doctor’s office at precisely 9am for my 9am appointment. I had a sub arranged for the start of the class I teach on Thursday mornings. I walked in minutes before he was scheduled to leave. Due to general confusion and who knows what because of the weather and the 1 hour delay called at my school, my students hadn’t started anything and several of them arrived when I did, which was late even with the delay. The class still went well and all was accomplished that needed to be, though my shower and teeth brushing was vastly later than is my norm. When Sarah arrived home I asked the driver what had happened in the morning. It turns out he was late starting his route and told the bus company to call me. They didn’t. When I called them they gave me completely incorrect information. He wasn’t yet to our house! At least I wasn’t losing my mind. Now the driver and I exchanged cell phone numbers so we can communicate directly and correctly.

Much love to all of you. Happy thoughts!

November 11

I love how much Sarah loves learning new, sophisticated words. The first three days of this school week she got ready for the day way more easily than usual. There was almost no yelling. I wondered where my child had gone. Then Thursday morning dawned as early as they all do and she was back to her customary times of yelling. After her grumps were out I told her that she had been really ornery. She looked at me with a delighted gleam in her eye and rapturously said, “yes!”

During my SR time with her I didn’t feel particularly connected or inspired but I was able to relax into hanging out together. She wanted to string her loom and then wanted to climb into it. 

I continue to marvel when I watch Sarah tie her shoes. I know it isn’t needed for her to have a successful life, but it is so amazing to see her dexterity. It still feels like a miracle because it used to feel impossible. 

I had a conference with Amy’s teachers and I had Sarah’s IEP meeting. In telling the girls that such meetings were going to happen, I said what I always do... that I am going to meet their teachers and we will talk about how great they (Amy and Sarah) are. This is always true. I love that this is true even when we are discussing Sarah’s challenges and challenging behaviors. 

Reading through the IEP pages felt rather disheartening as usual. I know I have tons of hard moments with Sarah and there are tons of things that I wish were easier. I know they have to write about where she struggles or where she is academically so that they can write goals for how to proceed. Still. There is that very low IQ number or other categorizations that feel yucky. I then have to remind myself to focus on things such as shoe tying or reading. She is reading at a first grade level. That is amazing. What I really appreciate about her team at school is how much they clearly enjoy Sarah, despite any challenges, just as the rest of us who know her do. It felt like a wonderful collaborative effort with flexible, creative thinking about how to proceed. The year began with Sarah joining the regular fourth grade classes for the full time. I think that was too much for her and she is still in a rebound stage. One new thought is that just because she is technically in fourth grade doesn’t mean she can’t join younger classes for things. They will also see about finding a peer buddy for her, possibly a much older one or a slightly younger one. This idea came from recognizing how much she can connect with Amy and learn from Amy, but that she struggles with groups of other kids in terms of connecting. She also does so well with grownups that that is why an older kid might work well. We talked about her love of cooking and being a waitress and that maybe that can factor into her subject lessons and her celebrations for completing some school tasks. 

Mom-Mom and Pop-Pop are visiting at the moment. The girls have loved playing hotel with Mom-Mom. Sarah even agreed to read a book to Mom-Mom, which hasn’t happened much before. As is her wont, she skipped and hurried through the words. Amy sat next to her and told her she had to say each word clearly. Sarah did! At least for a sentence or two. I love how Amy can effectively achieve outcomes that no one else can. 

Mom-Mom and Amy were playing a surprisingly fun game of “are you wearing...?” with questions ranging from “are you wearing socks?” to “are you wearing a kitchen counter?” I was asked if I was wearing a bird. Luckily I took my time before answering, thus remembering that I was in fact wearing my Pigeon socks!

Lots of love to you all. May you have support and flexible thinking for any of your challenges. 

November 4

Sarah seems increasingly attached to Amy as a playmate and companion. Earlier in the week she was so intent on getting extra time with Amy to play hotel or sleepover that Sarah got ready for school the fastest she ever has. While she often plays with (or fights with) Amy, and while she often asks grownups to play certain games with her, this seemed new and significant. 

For my Tuesday night teaching I was excited to wear my skeleton dress. I have been waiting to teach on a day close to Halloween for years! The last time I dressed up for a Halloween at massage school was about 19 years ago when I was a student. I went as a mussel.

Amy adores our cat Olivia. This week, for the first time ever, Olivia curled up in Amy’s lap.

Our Sarah-Rise volunteers and sitters continue to amaze me as much as ever with their creativity. Sc made a pretend fire with Sarah by making a pile of wooden marble run pieces with a cut-out paper flame in the middle. 

For Halloween, Sarah’s school doesn’t have fourth graders get in costume. (What?! Why?! They are not too old to dress up!!) They do have a party where kids exchange treats with their classmates. Sarah came home with the biggest haul ever. The bag was laughably heavy. I spent many minutes swapping in things that she could eat and adding what she couldn’t to a bag for Amy or our bucket of candy to hand out to trick or treaters. Unfortunately, Sarah was feeling sick. She stayed home instead of going trick or treating. She wasn’t even sad about missing it, which shows how sick she was. She stayed home on Thursday, in bed most of the day. Thursday was also the start of a new neuromuscular class for me to teach so I was extremely grateful that my father-in-law was able to babysit. Asking someone to hang out with your sick kid is a big deal, and for them to accept is an even bigger deal. Wednesday night I was anxious about Sarah’s sickness, worrying that it might be something dire and that in some way I had failed as a parent in my decisions about her health. Our cat also has something going on health-wise (probably an allergy of some sort) and I was anxious about that, concerned about how intensely heartbroken Amy will be if she dies. I really didn’t sleep well on Wednesday night, so when I came home from teaching on Thursday morning I was exhausted. I napped and then felt ready to work that night. Friday, Sarah needed to stay home again, even though she was notably improved. I spent half of the day in bed too and that helped me feel much better. 

When any of us are sick I tend to let technology use be unlimited. Yesterday it was limited because all of us are well (except the cat). By the end of the day there was much more of a mess throughout the house. At first I was grumpy, but then I realized that having toys spread all over is a wonderful sign that the girls have been playing and feeling good.