July 31: Challenges and Insights re: My Favorite Baby Crocodile

This morning I almost forgot it was Sunday. That is part of why I’m writing later than usual. The other reasons are just taking care of various household things and doing “chirp chirp” snuggles and naps with Sarah.

Sarah’s latest thing of seeming to be extra sensitive to being touched and asking us to apologize for even lightly brushing her hand even if we are helping her to put on her watch as she requested has been extremely challenging for me. Wednesday felt particularly difficult and I had no wiggle room to think creatively or not take it personally. I felt hurt, confused, frustrated, angry, and upset. I was often snarky and sarcastic as I apologized for “helping her” or for not even touching her! Because sometimes she will look at me and ask for an apology when I haven’t even touched her. Her sensitivity is to others as well, not just me. I know it isn’t that physical contact in general hurts because she still initiates chin presses and hugs. When I do lightly touch her by accident and she says “ow” then I ask if it actually hurt or if it was just a surprise. She says it doesn’t actually hurt. And yet sometimes she seems to cringe if I come close. This is not fun. Wednesday evening I completely ran out of space to deal kindly with it and Carl had to step in to help us finish our bedtime routine. 

I did learn from watching Carl one evening as he was able to turn the dynamic into something with more play and lightness. When he heated some pie too long in the microwave then Sarah thought that was hilarious. She pretended to heat her own pie too long and he playfully apologized for it being too hot. She laughed. I will tentatively say I have slight hope that Sarah’s new pattern is easing, especially as we are able to respond more lightly. I think when I felt so hurt and frustrated by it, as if the rug had been pulled out from under me once again, that my own tightness didn’t help shift anything for her. Shocking, I know. I cried, I journaled, I talked with my mom, and I scheduled a consultation for Aug 8 with someone who is a Son-Rise specialist. That all helped some and maybe it is becoming slightly less frequent of a dynamic with Sarah. I’m not sure. I don’t always trust my perceptions.

I will say though, in terms of my perceptions, that sometimes they are spot-on.  This morning there were two times when I needed to find something that Sarah wanted and couldn’t find. Each time I was able to let my mind be relaxed while I thought about where it might be and each time I was led unerringly to look in the right spot. I don’t know if that mental relaxation could help with the “ow” and apology requests but it certainly can’t hurt. As I got up from our nap my hair apparently brushed her and she wanted an apology. I took my hair in my hand and pretended that it was speaking to say, “I’m sorry.” She laughed and said, “that’s funny.” Similarly she liked it earlier in the week when the empty grocery bag I was carrying apologized for bumping her.

For another unknown reason Sarah is often saying, “we don’t talk about hitting” or “you won’t poke me in the eye because you like my rings.” What??? Where is this coming from?? Carl noticed that sometimes in moments of intense emotional upset Sarah will reference something that perhaps happened at school months ago. So maybe all of this is processing things talked about at school ages ago? Or did she and another kid have a conflict at school? Trying to get answers is rather impossible as she just repeats part of my question as her answer.

Yesterday morning she again felt sick with phlegm and a headache for a few hours. It went on long enough that I worried we needed to cancel all of our plans. And then she guzzled a gatorade and had lunch and seemed fine. It is hard enough to keep my own self hydrated. It is even more challenging to keep someone else hydrated. Once she was better we were able to keep our appointment to renew her passport and go to a graduation party for a family friend. The kids and I had a great time in the pool, and Sarah and I played several games of tossing bean bags towards a goal. 

I pay $4 an hour for the kids to help me clean the house or deal with the messes in their own rooms. While I don’t want to have this be forever, because I want their own room upkeep to be on them, I do love that they are motivated to deal with piles. Sarah has been doing a wonderful job actually putting her clothing away instead of just piling it onto her dresser. Amy does a wonderful job dealing with piles of toys and clothes and art supplies that accumulate in various corners and surfaces of the house. They also helped me with a long morning of groceries and errands so I paid them some for that too. Since we don’t give them an allowance it is empowering that they have a way to earn money. I also realized that Sarah does a great job of staying with me in stores and this wasn’t always the case. As with so many things, we eased into this gradually and it has been this way for a while, but it was only on this shopping trip that I realized how I now take it for granted. 

Some tremendous firsts from the week include Amy, Sarah, and Amy’s bff going to get ice cream by themselves!! Amy wanted it to be Kids Only so was happy to be responsible for making sure Sarah crossed streets safely and for requesting a clean ice cream scoop because of Sarah’s nut allergy. Now I realize that next time I can tell Sarah to be the one to ask for the clean scoop and say why. And Amy went to Walgreens all by herself to do an errand for me!! 

Yesterday Amy and Carl enjoyed a bit of time biking around town for Open Streets. That was after she and I went to her orientation for 6th grade. She will be at her same school and with many of the same classmates but in a new building and with new teachers. This will be the first time she can’t walk to and from school since she was in preschool. We are waiting for the bus pickup and drop-off information.

I forgot in an earlier update to share how funny Sarah found it one evening when I went into her room and exclaimed, “Why are all the Peppa stuffed animals sitting on your bed with crayons?!” Each pig had it’s own pile of crayons. Apparently this was from an imaginary restaurant that Amy was a waitress for, while Sarah and Anna practiced conversation skills while pretending to be at the restaurant and meeting each other for the first time.

I’ve been reading Sitting Pretty by Rebekah Taussig and I highly recommend it. It is eye opening and mind opening about ableism and how pervasive it is, to the extent that we don’t even notice it as optional because it seems like the truth about how the world is. It is helping me open up my perspectives regarding Sarah’s place and possibilities in the world especially as she gets older. 

I am also realizing that much of my upset and tension comes from resisting what is. I notice myself thinking “but I don’t want to…” and that is fine, but maybe my thinking I’m somehow entitled to (or wishing for) a path other than the one I’m on is what is causing my emotional blisters. Most of the time I don’t want another path but I wish mine had less potholes. Maybe if I really allow it to be ok that I may have the same conversation loops multiple times a day for multiple years and dive into that truth without resisting, maybe it will be easier. Maybe if I accept that I won’t understand what Sarah is thinking or where her new verbal isms come from, I wouldn’t have the tension born from resistance. Taussig made the insightful point that people think they know what their life path will be with someone who doesn’t have a disability (as a partner or, I would add, as a kid) but really… do we? More often than not people do not in fact get the life path they expect even when they start with what they think are the required ingredients. Sometimes I can think my life would be easier if Sarah was a typical kid, but… would it? Might it not also come with challenges that I didn’t feel equipped to handle? 

July 24: Return of the Prodigal Suitcase and Family Reunions

Carl’s suitcase made it home! It helped that he went to the airport in person to ask about it and then was given a phone number that actually reached a live person. That person did something to get the search for the bag reactivated and the bag arrived at our house two days later. 

Last Sunday the plan was for Amy’s Girl Scout troop and our family to go to Sandcastle for the afternoon. Unfortunately, an hour or so after we arrived the thunderstorm, that was predicted for later in the day, decided to arrive early. They closed the park before the girls had done anything beyond the wave pool. There was much disappointment. 

Amy received a fun and mysterious letter, with no return address and no legible signature, explaining why it was unfortunately not possible to send a unicorn to the moon. If this is from any of you and you want to fess up and receive credit let me know! (And I can still keep it secret from Amy). 

The most mysterious thing of late is Sarah and her new sensitivity to being touched by accident, however lightly. If my hand lightly brushes her shoulder when I am brushing her hair she will say “ow.”  When I ask if it hurt she says no. Or she will tell me she needs personal space even though she was the one to enter the room where I was and we aren’t near each other. I have no idea from whence this came and I’m finding it very emotionally challenging. She still gives me chin presses and wants to snuggle, which is lovely, but also makes this more confusing to figure out what is going on for her. 

Sarah has also been having issues with too much phlegm again. Perhaps because I took two days off from giving her Claritin. For three days in a row she had mornings where she felt sick to her stomach and needed to spit up phlegm and rest but then was all better. I took her to the doctor who suggested keeping her on Claritin for the foreseeable future and to start her days with a glass of water. That does seem to help. 

This weekend we are having a wonderful time visiting my aunt and uncle in Virginia. On the way we stopped at our favorite rest area that has a sand area, a wooden train (I swear it used to be bigger!), and delicious cider donuts. The house where we are staying is next to a lake and many other extended family members are visiting too. Amy had a hilarious conversation in gibberish with the three year old (they were both fluent) and has also loved meeting an older cousin with her pet Guinea pig. Yesterday we spent a ton of time in the lake and at a pool. The water was so warm that I even got in! I also took a turn with Amy as we sat on an inflatable couch and were pulled around by a boat. This morning Carl is doing a long bike ride as part of his training for a super long bike race in September. I’m sure we will all also spend a lot of time in the water today. It is so fun to spend time with family that we haven’t seen in many years

July 17: England and Luggage Issues

I had a lovely time being together with some of my Alexander Technique friends in Bournemouthe, England. I had a 30 min walk (google said 20 min, but I’m slower than that right now) to get to the host’s house for our gathering. I was pleased that I was able to do such a long walk all at once. Carl and I had covered much ground too, but usually in shorter stints. I also find it easier to walk when I’m with someone else, so doing 30 minutes on my own felt like an achievement. I was also proud of myself on the day I figured out how to take a bus for part of that distance. My friends also gave me rides sometimes. We went to the beach twice and that was also a good amount of walking. Unfortunately, I had packed for Wales with jeans and a wool sweater. I hadn’t really planned for the sunny and windless 75 of southern England, so I only had one t-shirt! Overall it was rejuvenating to be with my AT group. It had been nearly three years since we last saw each other and it filled my heart to be with these dear people again. We hope to reunite in the future, although Amy is convinced that once a year is too often for me to go away. 

On my last afternoon in Bournemouth after my AT gathering was done, went off to do one touristy thing. I went to find the grave of Mary Wollstonecraft Shelley, author of Frankenstein. I made it to the correct church and graveyard but then realized I had no idea how to find the actual grave. Many seemed to have special signs for tourists to read. I was worried hers might be in the church itself and that was due to close in twenty minutes. I stood in the graveyard a few feet away from one of the graves that had a marker, searching online to see if I could find guidance. Nothing. I gave up and walked a few feet up the hill to look at the grave I was closest to. Yup. It was hers! 

When I wrote last week that was prior to Carl’s Heathrow airport experience. Luckily he got there with plenty of time, but… just as he was close to the front of the line to check his bag, the baggage system for terminal 5 shut down. Then the baggage check-in system for all of Heathrow went down. He waited and waited and waited. Eventually he was told to just leave his tagged bag in a large pile. Since so many people were waiting to deal with their bags, it meant that the security line was relatively short. Still, Carl ended up running to make it to his flight on time. And to get from security to the gates is a long way involving escalators, long distances to walk or run, elevators, trams, and more long distances to traverse. He just made it. 

By the time I was flying home on Wednesday, Carl’s suitcase had still not arrived in Pittsburgh. I got to Heathrow 4 hours early, but that was actually too early to check my suitcase, so I decided to see if I could track down Carl’s suitcase. That situation felt ridiculous. There is just a set of seats by a sign that says “luggage inquiries” and if you are lucky someone will pick up when you call via the courtesy phone. Or if you are extra lucky someone will come around and take notes on a clipboard before they disappear through a door that regular people are not permitted past. When you look through the doorway you can’t see anyone at a desk or anyone who seems related to baggage inquiries. I did talk to the clipboard person, waited for half an hour, and then gave up because at that point I could check my bag and I didn’t want to mess up my timing. It was relatively easy to check my bag but then the security line was the longest I have ever experienced in my life. I think it took me 90 minutes to get through, and that was with the help of being sent up to the front when I was 3/4 of the way through. I was worried about missing my flight but I couldn’t run because my hip isn’t ready for that yet and in many areas everyone else was also going where I was going so there was no way to easily get through the crowd. I made it to my gate when I was sure they would be done boarding and about to close the flight. Instead it turned out that boarding hadn’t even started. Eventually I got a text from British Air telling me the flight was delayed. That was never put on the big boards or announced. So I got some food and settled in with my book. At one point a group of high school students near me started singing “Miss Mary Mack.” They didn’t get far before realizing they didn’t know the words. I chimed in and brought the song all the way home to the end. The kids were thrilled. All of my mothering years of singing songs paid off.

The original plan was that Carl and the girls would meet me at the airport, but once my flight was delayed we knew that didn’t make sense. Evidently there were big feelings at home about this change. And then the power went out. Carl said that actually helped the moment because it changed the focus. I landed at 10:30pm, made further inquiries about Carl’s suitcase, was told it had arrived in Pittsburgh the day before and would be delivered to our house. Great! Except that if it arrived July 12 then why has it still not made it to our house? Carl and Sarah even went to the airport yesterday, but since there wasn’t a British Air flight arriving that day then there was no one to open the office where the suitcase might be. 

I’m so glad to have gone on my trip and it’s also so nice to be back home. On Thursday, Sarah and Amy and I went out to lunch and to do some errands. We explored a used clothing store we had never been to before. Sarah found a shirt with dinosaurs in a jungle, and Amy found some very Amy-ish items as well. On Friday they had their last day of Camp Anna, which concluded with a performance of their beatnik poems while wearing sunglasses and homemade berets, a performance of cheers and gymnastics, and a short Harry Potter skit that involved making a feather fly. 

Lots of love to you all. May you all have your luggage!

July 10: Wales

Fortunately, I recovered from covid and tested negative in time to go to Wales with Carl to celebrate our 20 year anniversary while the kids had adventures with Grandma and Grandpa. Carl and I spent some time in the middle of farm land in southern Wales and also had some nights at fancy manor houses, including Plas Dinas. Plas Dinas was the family home of the man that Princess Margaret married so she spent lots of time there. We explored castles, took a train part way up a mountain, ate delicious food, had a seagull try to steal my ice cream, drove on impossibly narrow roads bordered by tall hedgerows, and tried to pronounce ll in Welsh. Carl did the fastest zip line in the world. About 100mph. I watched. My hip did well with all of our walking. Climbing over stiles was the most challenging bit, along with some of the very narrow stone spiral staircases. Yesterday we had a long day of driving to get down to Bournemouth in England, stopping on our way to visit the smallest house in England. It was incredibly tiny. I will now stay in Bournemouth for a couple of days to review some Alexander Technique things with the friends I studied with pre-pandemic. Carl will fly home today. 

Astonishingly, on one of our first days we found a carved wooded crocodile statue and our Airbnb had a wooden spoon with a musical note carved into it! What are the chances?! 

The girls have had a good time exploring the library, a bookstore, a giant chair, swings, and getting ice cream. I miss them a lot and I’m jealous that Carl will get to hug them sooner than I will. It has been wonderful to text with the kids a bit, which is different from when we have been away on trips in the past. Sarah mainly texts strings of gibberish but I think she still likes the pictures we send. Given her penchant for saying “it’s a been a style” I had to send her a picture of Carl next to a stile. After all, I’m not sure if she really has been saying “it’s been a stile!” Amy likes to joke about flying bananas so we had to send her a picture of a truck that was labeled The Flying Banana. 

July 3: Covid, Crocodile Rings, and Being Carl

Carl was away for the week so we celebrated his birthday when he got home on Friday. Amy helped me make a carrot cake and frosting, plus using frosting as first aid for the pieces of cake that didn’t come out of the pans cleanly. Sarah and Amy decorated the cake and chose the candles. We also had a conversation about how most carrot cake in the world at large has walnuts and is not Sarah-friendly, which led to talking about many foods that might be off limits for S and so one needs to ask (eg brownies, cookies, banana bread, pesto). 

The bad news for the week is that I had covid. It didn’t hit me terribly, but it wasn’t a picnic. I opened all of the windows and wore a mask whenever I was inside the house or even if I was outside if the girls were near me. They got to watch many shows and movies. Sarah really wanted snuggle time with me but I couldn’t lie down without coughing until recently and by then Carl was home so he was able to be with her instead. Amy and I played many many many games of Who’s She? Which is a version of Guess Who?. The original version of the game is made with cheap plastic and the people you are guessing between are largely white and male and you just ask about physical characteristics. The new version that I got via a Kickstarter campaign is made of wood and features important women from a range of historical time periods and backgrounds. You ask each other questions based on a symbol key to figure out who the other person has as their hidden person based on their life experience (eg did she defend women’s rights? Did she study mathematics?). One of the people on the game is Aretha Franklin so that led to listening to Aretha for as much of the weekend as I was allowed my pick of music. 

Sarah’s second crocodile ring broke because both the first and second rings were made of a cheap metal blend. It’s an adjustable ring so over time the adjustments broke the metal. I ordered what I hope is a stronger silver version through Etsy, but while waiting for that I decided to take pity on myself and order something from Amazon that would come quickly. I just wasn’t in a mode to handle Sarah’s impatience. One morning we sat on our porch swing pretending to be Frog and Toad waiting for the mail. Amazingly enough, the mail did come at that time, and Sarah’s new (cheap - probably will break) ring arrived!. 

Sarah still asks constantly if we are doing a nickel chart or if we will take a nickel from her. She doesn’t seem anxious when she asks but at the same time I think the time in December when she lost a nickel from her chart at school has stuck with her in some deep way. I used to always say no one would ever take a nickel again. But it seems that on a field trip at the end of the year there was a point system and she lost a point and that kicked everything up again emotionally. So now I have attempted to explain that while some people may mistakenly have nickel systems or point systems no one can take away from the nickels in her heart. No one can diminish who she is. She also sometimes asks if she did anything wrong. I have tried explaining that we all do things wrong and that is part of being human. I don’t want her to think she always needs to do things right (I know from personal experience how wearying that is). 

Another frequent refrain is that Sarah asks if a certain kid from her class wears glasses. I don’t know! And when I say I don’t know then she often tells me she is wearing pajamas or asks about nickels. I am having a hard time being relaxed and creative with this because it just makes no sense to me. I don’t know why I need this to make sense when so many other things don’t, but so it goes. I also weary of the nickel questions. But perhaps this hasn’t been my most resilient or energetic of weeks. 

Yesterday Carl served high tea with a serving tower made of plates balanced on glass storage containers. Then Amy dressed up as Carl, wearing his new cat tie that he got for his birthday (he also got a crocodile tie), his shirt, some glasses, and his shoes. Then he and the girls played a three hour board game! Sarah spent at least an hour after that time doing Peppa Pig puzzles in her room. And I read an entire novel over the course of the day.