March 26: Greetings, Love, and Epic Adventures

Sometimes I think life is like a game of Headbands where we are all trying to figure out who we are based on input from others. Occasionally we have to know that how someone else is responding to us is really showing us the card on their head rather than our own, but sometimes I am on the receiving end of so much love and goodness that I think, “I should really take this in - perhaps it is telling me who I am.” So I am selective in what answers I attend to and how I interpret them. On Wednesday morning I had an email from a friend encouraging me to let someone show me their love. It seemed that more loving affirmations came in that day than usual, most especially a book made by Anna about "Jennifer The Adventurer." It is amazing and beautiful and wonderful. I feel so seen and loved for my best self.

Evidently, Sarah has been having rough mornings at school for a while, crying and wanting to go home as soon as she arrived. I had no idea because she always leaves happily for school. Her teacher called and explained an idea to change Sarah’s morning routine. It had been “get off the bus, be upset, have a juice and a mint, get on with the day.” Her teacher said she was going to have Sarah wait with the teacher who greets busses, helping greet students instead of going straight to her classroom. I suggested still offering her juice and a mint so she didn’t think she had to be upset to get those things. So far the change is going well and Sarah loves her job as a greeter. I always thought she could be a professional greeter when she is older given her love of opening doors, her phenomenal memory for names and details about people, and the radiant joy she can exude.

Amy has been more driven about doing her homework without my saying anything. She has always been pretty on top of it, but also always wants to watch a tv show after school, which is totally understandable after a long school day. But when she came home Thursday she said she didn’t think she should watch her show because she had so much homework! I wish she didn’t have as much work, but I know many times she doesn’t have any. And learning to plan and make conscious choices about time is a good skill to have.

This weekend I’m taking a zoom class called The Autism Crisis Turnaround with Raun Kaufman (the original Son-Rise son and Son-Rise Program expert) and Kate Wilde (a Son-Rise Program expert) about how to support Sarah more so that she has fewer times of screaming and big upsets. Of course having big feelings is something we honor in this house, but I love the perspective that I can change some of my responses and parenting choices to help Sarah feel safer so she isn’t in fight or flight mode as often, which will allow her to move through life with more equilibrium. It is good to remember that she isn’t having a hard time on purpose and that the seeds for an upset are often planted well before the upset sprouts - possibly so far ahead that we haven’t noticed the connection. 

It was such a beautiful day yesterday that Carl and the girls walked (C) or scootered (S and A) to a nearby bakery. Some of the sidewalks are unusual and include a small bridge. After hearing Amy proclaim that many things were epic, Sarah went over the small bridge and declared her experience to be epic.

I hope you feel safe, loved, and supported. If you need a boost, just let me know!

March 19: A Hipversary and a Double Birthday

We have a new oven but…. the hole in the kitchen island was not a standard size so… our oven is plugged in and works but it is not where it needs to reside. We need a counter cutter to trim the tiniest bit of granite. But at least the oven works.

My hipversary was on Thursday and while it’s exciting to realize that a year has passed since my surgery, I’m not exactly thrilled with my ability to perambulate normally. My left hip intermittently doesn’t function quite right and I limp around. On other days my right leg still aches in a way that I’ve always felt was my bone hurting and that seems to have increased a bit since I fell. So I’m going to my ex-surgeon’s office for an X-ray. I say ex-surgeon because if I need further surgery I will find someone new and also, he retired! I found out when I scheduled the x-ray. It doesn’t quite feel great to know I was within my surgeon’s last six months of surgeries that he did before retiring. And yet, I knew he was no spring chicken.

Speaking of spring chickens, spring is a great time for birthdays. Amy and I celebrated our shared birthday yesterday, as part of a weekend visit with my mom and stepdad. We opened presents yesterday morning because Sarah was so eager to open her couple sister-presents that we knew it would be an easier day overall if we did presents immediately. On the night of the 17th Amy listened to and sang along with “Let it Go” from Frozen in honor of letting go of being 11 and “How Far I’ll Go” from Moana in honor of her upcoming year. The last word she said before bed was “moo” in honor of her alter-ego Moo Kitten and her first word in the morning was “meow” in honor of her love of cats. 

My birthday morning started with Sarah whining and protesting about something I said, so I initially felt grumpy and out of sorts. Birthdays can sometimes be the worst days because of the expectation that they will be the best. It helped when I decided to focus on it being Amy’s birthday rather than my own. It was also wonderful to receive calls from my two best friends that have been my BFFs for 42 years! They are my soul vitamins and I can’t imagine my existence without having such friends so deeply in my heart. Even if we don’t talk or see each other often, I always know without a shadow of a doubt that we are there for each other no matter what. 

This morning Sarah had big feelings and I had little room for them. Luckily Carl and my mom were able to give her some loving attention, listening to her upset. Sarah loved it when my mom mentioned the idea of waking up on the wrong side of the bed. 

To backtrack in time, Thursday night Sarah had a seizure. This was less than 2 weeks since the previous one and happened despite increasing her anti-seizure meds. Her first word after the seizure was “panda” in response to my “hello baby panda!” After about half an hour she walked to my bed with Carl’s support because she tends to be a bit wobbly right after a seizure. She and I didn’t really sleep much, although we rested. Carl and I intended for her to stay home or go to school late so she could sleep as much as she needed. However, Sarah was determined to go to school! Normally I get her up at 5:50 because the bus comes at 6:51 (her driver is precise!) At 6:35 she was still in bed in pajamas, but was clamoring to ride the bus. Somehow, miraculously, she threw on clothes and had some breakfast in time to put her shoes on and get on the bus at 6:55. She didn’t have time to brush her teeth but that’s ok! I told her teacher the situation, but she seemed to have a good day. I didn’t receive any texts or calls. She was in good shape when she got off the bus and didn’t even nap immediately. She did take two long naps yesterday so I think now she’s caught up on sleep, but taking long weekend naps is also par for her course.

March 12: A Birthday Bash and Contemplations on Flashing Lights

The panda? The panda on the wall? It is very sad today! 

For weeks Sarah has been asking how the panda picture on her wall would feel when she and Amy were away for Amy’s birthday bash sleepover at Anna’s. We have been predicting that the panda would feel sad, forlorn, bereft, and dismayed. And indeed we were right! 

Yesterday Amy had a wonderful birthday party at Urban Air, a trampoline park filled with many activities beyond mere trampolines. It was also filled with noise and various flashing lights. I was not pleased about the lights and felt a bit anxious about Sarah’s night, worrying that the lights would cause a seizure. All was well. Perhaps she wasn’t around the lights enough to be a problem. Or maybe it helped that we increased her anti-seizure meds, under the guidance of her neurologist of course. I don’t understand why places need to have flashing lights to make you think it is more fun. Anyway, it is probably akin to things like food allergies. Unless you are personally connected to someone with an allergy, you may not even think about such things. So if you aren’t connected to someone who may get a seizure in response to flashing lights, you may not consider the lights to be a problem at all. 

Anyway, both Amy and Sarah had a great time at the party and then went off to Anna’s for the sleepover. Amy’s birthday theme had been the four elements (earth, air, water, fire) and she and her BFF decorated cupcakes with that in mind. Amy dressed as a water element and created a “What element are you? quiz for her friends to complete. To support this theme, Anna made a sign for Amy representing the elements. They also made hair-bows for Amy to add to her water/mermaid look.

Carl and I have not been doing a good job of picking movies to watch when the kids are on their sleepovers. We keep picking things that look interesting in the preview but actually are weird and uncomfortable to watch and then we need to watch something funny to recover. Last night we watched “White Noise” which was enjoyable in some ways but I think they showed all of the funny parts in the preview. The part of the movie I found most difficult to accept was that the whole family went grocery shopping together. This is a family with 4 kids! Who does that? Who has time when they can actually all be together at the same time? And if they are, why would they choose to go grocery shopping?! That is just as unbelievable as all of the characters in the freezing realms of Game of Thrones not wearing hats! I mean, come on! 

We also watched Dumbo with the kids on Friday night. We were stunned to realize that parts of the movie we remembered as long and significant are actually quite short, and the neon pink elephant montage when Dumbo is drunk lasts a ridiculously long time - and has flashing lights!! What is with the flashing lights? I was nervous that night too but again all was well. 

I got an alarm clock for Sarah to help her be more independent in the morning. Since she likes Carl’s sunrise clock I wanted something similar but easier to use. I also wanted something that didn’t have a flashing/rotating color light option. It was difficult to find something simple and then it isn’t actually as simple to operate as we had hoped. But it is simple enough and Sarah likes it. She especially likes the option to go to sleep with ocean sounds playing in the background. 

In other news, our oven died. We knew the control panel was on the way out, but we thought we had more time. The plan was to make Amy’s birthday cupcakes Friday afternoon, and we did! We just took the pans filled with batter to Amy’s BFF’s and used that oven. Thank goodness for friends. When the cupcakes were cool then Amy’s friend brought the pans back and the two of them spent hours doing elaborate decorations. 

Lots of love to you. I hope your ovens are working.

March 5: Sneakiness, Dr. Seuss, and an Unplanned Trip

Firstly, why did it take me years to notice the pants-wearing discrepancy in Daniel Tiger? I understand that some cartoon animals wear shirts (Donald Duck) and some wear pants (Mickey Mouse), but why do Daniel Tiger and his dad only wear tops but the mom tiger wears a shirt and pants?! 

Sarah’s school celebrated Dr. Seuss week and Sarah was thrilled to wear pajama bottoms to school on Monday. Tuesday called for stripes, which she wore in the form of clothes with musical staffs. Wednesday was career day so she went as a music teacher, wearing her somewhat dressy musical note pants and button down shirt made by Grandma. Thursday was spirit day so she wore one of her St Therese Tiger shirts. Friday was a regular uniform day but she got to bring a stuffed animal. She was so happy carrying Mae from Turning Red. 

One day Sarah came home and told me that one of the assistant teachers told her not to watch Caillou on the iPad because that was for little kids. I asked what the teacher wanted to her watch… Bible stories. I was not pleased but figured I should get more information. When I spoke to her main teacher I learned that this event wasn’t during Sarah’s free ipad time. It was during Religion! We had a good laugh about Sarah trying to sneak some Caillou in when she was supposed to do school work. If the assigned work is too hard for her in Religion class then they want her to watch Bible stories. I did explain, though, that I feel strongly that Sarah never be told something is too young for her. If she finds value and a sense of peace from watching a show then I want her to be able to watch it - during her free iPad time of course!

One day Sarah and I were driving home from her orthodontist appointment and we drove past the Jewish Community Center. She asked what it was. I said it was the JCC. She then said it was the JCC Penney! I had never thought about those words connecting!

Carl was away skiing for most of the week, including getting a ride in a helicopter to the top of a mountain and skiing part of the way down. 

Amy had a good time roller skating with a friend one afternoon. They also crushed some sidewalk chalk and added water to make a paint. It is nice to have some warmer days! She and I enjoyed more episodes of the Great British Baking show, sometimes squeezing in a few minutes after finishing homework and having feelings about said homework. 

The tough part of the week was Wednesday night. Sarah had been sleeping next to me while Carl was away, but this night we expected him to return in the middle of the night so Sarah was in her room. I woke at midnight to Sarah screaming. In my haste to get to her I somehow tripped over my own self. All I knew was pain from my left big toe and crashing hard onto my hands and knees. I was panicked that I might have damaged my new hip, but I started crawling to get to Sarah. Meanwhile, she stopped screaming and came into my room, telling me it was too scary to be in her room. I asked if she had a bad dream and she said yes. I explained she still needed to be in her bed. After a few moments of kneeling and resting against the storage chest at the foot of my bed, I managed to get up and tuck Sarah back into bed. It has taken until today for me not to be limping and walking weirdly. My big toe continued to hurt and so I couldn’t take a normal step on that side and my right thigh ached more than ever. Thankfully I do feel back to normal now. 

The other unfortunate thing is that Friday night Sarah had a seizure and we have no nice explanation such as flashing lights. She hasn’t had an unexplained seizure in years. I’m not feeling great about this. I’m anxious and it made it harder to go to bed last night, as if somehow my fear and vigilance could protect her and control things - and I’m not even with her right now! 

I’m visiting a dear friend for a cozy weekend filled with cats, jigsaw puzzles, binge watching tv shows, and Bananagrams. Carl took the girls to the mountain house Friday night but there was no power. He did see a mouse in the act of nibbling a waffle that had been left in the oven! He then put out traps and caught the mouse. Carl and the girls had dinner by candlelight and headed home in the morning, stopping for brunch on the way.