February 24

We had some big moments yesterday. Sarah didn’t want to get out of bed to go to gymnastics. I stayed calm. I figured out a way to have us in harmonious energy instead of combative energy. We went to gymnastics and I didn’t struggle as much as usual. The biggest deal, though, was that we were a little late and I was relaxed and the world did not end.

When Sarah and I are arguing about something she will often say, “Ok, fine!…” but then she fills in the rest of the sentence with the thing she wants. Even though this comes during frustrating moments, it is still hilarious. I keep trying to explain that when you say “ok, fine!” you then say the thing that the other person wants. 

We had a Sarah-Rise team meeting for the first time in an extremely long time. We are a small team now, with just Carl, G, Sc, and me. I expected us to talk about how to help her focus on academics or at school better. What we actually talked about was so much better and will probably impact school and academics too. Mainly we talked about the moments when Sarah is resisting us about something, usually when it is time to go somewhere, and she just gets stuck in place and is spitting/giggling/screaming/putting her hand in her mouth and seems to be unreachable. Those are the moments when I can feel the most panicked that I am in some way losing her. I have been so frustrated myself that I was seeing Sarah as being bad, despite my mom’s reminders that she wasn’t/isn’t. G said it sounded like Sarah was in super fight/flight/freeze mode and that her system was in full panic mode. Oh. Oh my goodness. Oh my poor little Sarah. How did I not see that?! Sc wondered if there could be any relation to Sarah’s seizures or the anti-seizure medication. I have sent a message to Sarah’s neurologist asking this and I sent a message to Sarah’s teacher to see if anything of the kind happens at school. These stuck moments aren’t something that Sc or G experience because when they are with Sarah it is in the SR room, when there is basically no pressure on Sarah to do anything she doesn’t want to do. It was immensely helpful to describe our experiences to them and have such loving, compassionate, insightful listening and problem-solving. G and Sc are so deeply, phenomenally amazing that I still can’t quite believe our good fortune of having them in our lives. Now our focus can be on helping Sarah’s nervous system calm down, which also means helping my own system calm down. One strategy is to play music that will help one or both of us feel calmer. Yesterday I played music when we were both getting mad and it did help. I am also aiming to have more moments of meditation, self-Reiki sessions, or Alexander Technique constructive rest for myself. The first step in helping Sarah’s system be calm is making sure that my system is calm.

Sarah was sick Sunday night and then for the whole week. It was just a cold, but it was enough of one to keep her home from school most days. It was also enough that I went into hyper-vigilant panic mode for two of the nights, flying out of bed at the slightest sound and panicking that she would have a seizure and that somehow that would equal death. I could rationalize that she was ok and would be ok, but I couldn’t seem to stem the tide of adrenaline coursing through my body. I have read that parents of kids with autism or other special needs can essentially have a form of PTSD. This seems quite plausible. During the SR team meeting, we also realized that Sarah may have some PTSD from her various times in the hospital, especially when she had to be held down for the EEG wire placement while she was screaming and fighting it for all she was worth. She probably also absorbed panic from me during her birth because I was so terrified that I wouldn’t have an alive baby. So. With this perspective coupled with the fight/flight/freeze insight, I have a new vision of my dear, sweet Sarah. I have a new approach. It isn’t perfectly impervious to her temper or her ignoring what I say, but it does help me become kinder, more playful, softer, and more creative about how to be with her. The plus side of her being home sick for much of the week was that we got a lot of snuggle time. My favorite moments were those spent in my bed, with each of us reading our own book. She would pause periodically to say how much she enjoyed reading together! Me too!! We had many moments of calling each other by her new favorite pairing of names, which are those of her great aunt J and uncle T. Saying those names can help her change her energy to sparkly connection instead of resisting. It can become wearisome because of the frequency, except when I remind myself that it helps calm her system and helps us connect. 

Thursday morning, Sarah needed to be home from school but I needed to teach so Sarah helped Grandma paint a fireplace. Sarah loves wearing other people’s clothing so it was perfect for her to wear some of Grandma’s clothes for painting. She looked like a miniature version of Grandma, complete with a handkerchief on her head. 

Amy moved up a level in gymnastics! It wasn’t on my radar as a possibility at all, but starting in two weeks she will be in the intermediate class instead of the beginner class. This is wonderful and exciting and will also mean gymnastics takes 2 1/2 hours of our day instead of 1 because the girls won’t have their classes at the same time anymore. We also have to be more careful not to have two absences in a row.

May you all have people to listen to your experiences with love, insight, and wisdom.