October 25: Carving Pumpkins and Waiting

In case there was any confusion based on my previous update, Sarah is still at her usual school virtually, but that translates into having a lot of amazing time with Anna. Anna helps with Sarah’s live meetings when Sarah needs assistance and continues to knock my socks off with the play-based lessons they design for the non-zoom time, which is most of the day. I had Sarah’s IEP meeting virtually this week and it went well, as they always do because I’m rarely asking for any changes. If we didn’t have Anna then I probably would have pushed for more zooms, but now I’m ambivalent about that because I would rather Sarah get the quiet time with Anna! The only thing I requested was a 15 second wait time after asking Sarah a question. It is a good reminder for me too and a skill most grown-ups need to work on regarding most kids. Usually adults give about 2 seconds of silence before re-asking/re-wording, but this restarts the cognitive processing so it actually makes it take longer. There was a moment recently when I asked Sarah something and thought she hadn’t registered my question. Luckily I was counting to 15 in my head because after 10 seconds Sarah answered my question! Later, embarrassingly, I didn’t give Amy time to answer something and she called me on it. 

One evening I kissed Sarah on the head and she asked me why I had done so. Now she likes to tell me that I kissed her on the head because I love her.

Sarah’s “tiny, tiny, tiny, shiny, shiny, shiny” routine has expanded based on her memory of a movement song/game we used to do when she was little. We say “tick tock tick tock goes my very big clock, but my little tiny clock goes ticky ticky ticky ticky ticky ticky tock.” When she was small I used to hold her under the armpits and swing her whole body as if she was the clock pendulum. Now she moves her self or her head.

Yesterday Sarah, Amy, and Carl carved pumpkins to make a cat-o-latern and a mouse-o-latern. They also made a candy slide so we can deliver treats from a safe distance. The girls are quite excited about going trick-or-treating, especially because Anna is going to be with them. Anna helped Sarah create her costume so she can be the house from Goodnight Moon decorated with musical notes. I am confused as to whether or not she is simultaneously going to be Hello Kitty since that has also been mentioned. I assume this will become clear on Halloween night. Amy is going to be a witch and has been riding her broomstick around the block every weekday to get to school (at our house). 

I give you all a kiss on the head.

October 18: Struggles, Snuggles and Detective Sarah

When Sarah was a tiny baby there were times that I felt trapped because any time I would try to do something I wanted to do she would start crying. My mom reminded me that I was actually allowed to still have a life. It was ok to go for a walk with Sarah and it was ok if she cried. Once I made the internal switch to remembering that I had some power then we would go for a walk, our crying would ebb, and life would be better. Sometimes now I feel trapped by various parts of life and forget that I’m allowed to do certain things even if everyone isn’t happy about it. I can feel that my very presence messes everything up and derails Sarah’s focus or equilibrium, while simultaneously feeling weary about how often Sarah wants to snuggle with me so that I never get to do my own thing! And very often “my own thing” is cooking or cleaning or doing laundry! This doesn’t leave me with much room to be me. I’m trying to remember the equivalent of “I do get to go for a walk.”

Sarah’s latest favorite script for our snuggle time is to say “shiny shiny shiny, tiny tiny tiny.” I added “teeny tiny and sheeny shiny.” This started when she was looking at her baby pictures. She was a tiny baby! We also expand on the theme to include past themes involving sad mice or “shave and a haircut two bits.” Recently we employed Bandits On The Run to create singing telegrams for Sc. and Anna based on their playtime with Sarah and Amy. Sarah loves to sing the songs and we often take turns with verses as we snuggle, sometimes changing the words to include more of Sarah’s loves.

Carl and Anna and I had a meeting to discuss Sarah and schooling. It was wonderful. It reminded me of SR team meetings from years past when we would come up with amazing new ideas. One of our favorite ideas is to have Detective Sarah. She so often asks questions about life and the world that I answer but don’t answer in depth. Now Detective Sarah has a notebook for such questions (with Anna as the scribe) and then Anna can use those questions to explore all sorts of subjects with Sarah. Recently, when they went for  a walk Sarah noticed a lightning rod on a house and asked about it. When they got home, Anna helped Sarah make a lightning rod for her small house. Sarah wrote about the purpose of lightning rods on a speech bubble that was attached to the pipe-cleaner rod that was attached to the small house. The speech bubble and lines were drawn by Anna. Sarah did the cutting and writing. Amazing! They also made a paper door with a label about the function of hinges. When you open the paper door you find a picture of Sarah. I feel like we went from wondering how to possibly engage Sarah in things pertaining to science or history to suddenly seeing the entry-point to a million possibilities. Of course Sarah’s own questions are the doorway. How did I not think of this before?? As with so many things, once something is realized it is blindingly obvious, but before it is realized we are blind to it. 

Anna and Sarah have been doing math with the small house, placing objects inside while counting or adding the number of things inside and outside the house. Sarah writes in her journal daily with Anna’s help, writing about her experiences or loves. Her writing is clearer than ever and she writes much more than ever before. Anna also helps Sarah with her reading by writing sentences about what they were recently doing and then Sarah reads the sentences out loud. This seems to be helping Sarah speak more clearly in general. There have been many times in the past few years when I have thought I should get the Sarah-Rise program going in full again, but then I have always felt like I just couldn’t. I just don’t have it in me. It is a dream come true to now have Anna running Sarah’s schooling in a full-SR way, better than I could have imagined. My jaw drops on a daily basis when I see what they create. This is a most positive side-effect of Covid-19.

I can see that for all of my struggles, my main goal is that the people who live in our house or frequent it feel supported in being their full selves. Sarah and I just need help making room for our full selves so they don’t get tangled.

You get to go for a walk.

October 11: Surgery and School Decisions

Thank you all for the mid-week support for Sarah’s surgery. It helped me feels supported and less anxious. Carl said Sarah handled everything beautifully. He was with her when she went under the anesthesia, but he said she would have been fine without him. The tooth fairy showed up (for the last visit ever for Sarah!!) with appropriately numerous gifts. Sarah received 2 Kit Kats and 3 books. She didn’t give a fig about the chocolate bars, but eagerly started reading her new books. Somehow the TF knew she would be delighted to own The Monster At The End Of This Book, the sequel with Elmo, and Pete the Cat and the Perfect Pizza Party. Two out of the three books had recently been featured on “Mr. Greg Reads” and Sarah often likes to have her own copy so she can follow along and do Ms. Sarah reads. When Sarah had her Facetime session with G, she read Goodnight Moon to him. It is so earnest and adorable. 

When I was tucking Sarah in at night after her surgery she asked if she could have another surgery the next day. I asked what part of the experience she was wanting to have again. She said, “to hang out on the hospital bed with Dad.” That is so sweet. I reminded her she can hang out on a bed with him anytime, without needing to have surgery or be in a hospital. 

Amy enjoyed being a witch for much of last week, but her dried Play-Doh wands kept breaking. I decided she needed a wand that wouldn’t break so a wand and cauldron should be arriving soon. Overall things are going well for Amy, but she definitely struggles if she is still doing school work at 5pm. Then everything feels too hard. So I think I need to nudge more firmly to get her started earlier in the day, even though she resists my nudges. Every morning she still needs time to pack her backpack, don her witch hat, and run around the block to get to witch school. 

Decisions about remote schooling continue to be challenging every time we have to make a choice. Amy’s school will have an option for kids to be in person to do their virtual learning. There was strong encouragement for parents to only opt for that if it was really needed. So Amy will continue at home and I didn’t even tell her about the choice. Sarah will also continue at home through the next quarter, but we know that she will probably be one of a very few doing so. The wonderful thing is that her school hasn’t had any cases of covid-19 so we are considering having her return at the end of January. From talking with other parents in general, I know I am not the only one to question all of my decisions all of the time.

I hope your decisions are feeling clear and easy. I just remembered the wise advice from a friend of mine. If you don’t know the answer easily, then maybe you are asking yourself the wrong question. As usual I keep asking what the right decision is and what I should do. What if I ask “what will I feel most comfortable with? What nurtures my entire family the most at this moment?” That is easier. I know those are underlying my should/right questions anyway, but it is easier to feel the answer if I reword things. So, may you easily ask yourself a helpful question.

October 4: Allergic reactions, mouse math, and Philly

Did you know that you can have a delayed histamine reaction to bad dairy? So that super itchy hives and blotchy skin and congestion begin possibly 6 hours after having the old cottage cheese that your mother thought smelled and looked ok but apparently was not ok? Now we know. Sarah was the victim of my cottage cheese misjudgment. Claritin and Pepsid AC came to the rescue, under the guidance of Sarah’s doctor via a telemedicine appointment. I am relieved that Sarah wasn’t sick, but it was certainly a time of puzzled worry as the itchiness increased. 

Every school morning Sarah has a really reeeeeeeeeeeaaaalllly HARD time waiting for Anna to arrive (to put it mildly). My suggestions of what she could do while she waits fall on resistant ears. Carl had the idea to ask Anna to talk with Sarah about the situation. Anna wrote a note for Sarah that says “Dear Sarah, I miss you. See you soon. Please do something you LOVE while you wait. xoxo Anna.” They made a map of a bike route that Sarah could follow on her stationary Zwift bike to ride to Anna’s house. They started a list of things Sarah could do while waiting. Day one with the new plan was still a bit challenging, but only in very specific moments when Sarah was maybe feeling like she didn’t do something well. She was late to homeroom so didn’t get to say hello to her homeroom teacher and Carl called her on laughing at Amy when Amy was sad. It was in those moments that Sarah then immediately requested Anna. 

I have never seen Sarah enjoy practicing her writing or her math the way she does now with Anna. She has been doing math problems involving how many mice are in a house. The house is divided into an attic and a downstairs. Different numbers of mice go in each space. After drawing the house, the dividing line, and the mice, she then circles each mouse as she counts it. 

Last weekend we decorated our porch for Halloween. Before winding an orange and black garland around our stair railing, Amy tucked it in her waistband to be the longest cat tail in the world. Amy also received her mermaid-pattern dress that Grandma made. Amy wears it daily. It is black with rainbow mermaids and purple satin trim, and a pocket! Olivia seems to like the dress too because she often curls up in Amy’s lap, much to Amy’s delight.

Yesterday I drove to and from Philadelphia for a few hours of a distanced, masked porch visit with my mom and stepfather. As I began the drive, my rental car started complaining about overheating. So as I drove down the turnpike with the heat cranked to the max and the windows open, Carl arranged things so I could exchange the car at a different Enterprise along the way. Thank goodness! My feet were roasting, my hair was windblown, and I was grateful to get into a car that could keep its cool so I could do the same. It was a wonderful visit, both so normal and so surreal. How peculiar to use the powder room but not be able to go anywhere else in the house. How odd not to hug upon my arrival. At the end, my mom and I donned bathrobes and disposable shower caps so we could hug and then she was going to wash the bathrobes when we were done. I wanted to hold on forever. The visit was worth every minute of driving and overheating. 

While I was away,  Carl took the girls on a short hike in the woods. Sarah normally resists such things mightily, but she did it!

Sarah has been enjoying watching the "Mr. Greg reads" from Friday night. He dedicated the reading to Sarah since she wasn’t up to their usual Facetime session due to her itchiness. Reading his dedication on FB and hearing him talk about how she always helps him pick his Friday book got me all teary. Given my challenges of connecting harmoniously with Sarah sometimes, I am extra grateful for the people who have their own wonderful connections with her.