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.

February 17

Sometimes things work out better than you could imagine. The girls had their first ski lessons for downhill skiing today. The most amazing thing was that Sarah’s instructor is a teen leader with the Friendship Circle, an organization that works with kids with special needs. Seriously. How did we get so lucky?! Amy’s teacher was also a good match for her. The lessons were individual and each girl did beautifully. Amy was going down the bunny slope on her own by the end. Sarah went down with help but as a single smooth ride (by the end). What also amazed me about the whole thing was that we had no hesitation about Sarah’s ability to handle such a challenge and have a private lesson (no parents allowed). We have really come a long way from all of the things that used to seem impossible (walking, talking, eating). Now I just need to remember that our current challenges (screaming, resisting, spitting, etc) are just as surmountable. Every single challenge has at one time truly seemed questionably attainable or laughably unattainable, until the challenge had passed. I can bog down in current tough moments when I think they won’t ever change. But why won’t they? Doesn’t all evidence point to change and growth and possibility? Isn’t Sarah’s passionate stubbornness actually part of why she can do things? Even if it seems to get in my way now because I want my passionate stubbornness to win?

Sarah has a new swim instructor and I feel like it will be a good match. All of her teachers have been fine but some of them clearly are able to delight in her while requesting the right level of challenge. This new one seems to have the possibility of delighting in her. I hope so. For all of the times I may be frustrated and not find delight, I still want everyone else in her life to delight in her spunky self. 

Valentine’s Day went well. It is a huge holiday in our household because what is not to love about hearts and flowers and chocolate and making art? So that Carl and I could go out, I arranged for one of the girls’ favorite people in the universe to come over for a special Valentine’s Day party. I decorated with streamers and flowers. I surprised them with heart umbrellas and little nail polish kits. They ate tomato soup and heart-shaped toast. They had chocolate covered strawberries for dessert. Apparently they did their nails while listening to songs from “Annie.” Carl and I had a very mediocre dinner but we did enjoy walking 90 minutes home. We could have gotten a ride but we didn’t want to get home too soon! We knew there was a fun party and we didn’t want to get in the way. 

Thursday also had some kerfluffle due to the morning being slightly different than usual because of Valentine’s Day. I forgot Sarah’s anti-seizure meds. Due to various other factors, the earliest I could go out to her school was 1pm. Unfortunately when I got there I discovered that I didn’t have enough for a full dose, not by a long shot. Sigh. There wasn’t time to go home and back again. Then her bus was over 30 minutes late! So her first dose was quite late. It seems to have all been ok, but what a day!

May things work out better than you hope or expect. 

February 10

I feel like I could write two entirely different updates with entirely different perspectives. Maybe that is always the case with all of life. 

There have been many moments that have been sooooooo hard and I have felt so done, tired, weary, scared, despairing, and at my wit’s end for what to do. It is disheartening to feel like I will have moments every day for the rest of my life with Sarah screaming and/or refusing to move. (I realize it might not actually be that way forever.) Sometimes it is like she suddenly becomes a different person, switching from easy-going to stubborn fighting with no warning of the switch. We had two mornings where she was unusually cooperative with coming down to breakfast and even snuggled on my lap as she ate. Then as soon as I said it was time to go get dressed, she instantly changed to fighting some part of that. (Often she doesn’t fight it.) One morning she was so determined to wear shorts that she was licking them, somehow thinking that made them hers to wear. At my mom’s suggestion, I have started waking us up ten minutes earlier to give us extra wiggle room. This does help, but depending on how many sticky moments we have, we might still be hurrying to put on shoes while the bus waits. Do I need to get us up half an hour earlier? I could try that, but that means 5am, and getting enough sleep is also an important part of things flowing easily. You probably also all heard Sarah’s screaming on Friday when our internet didn’t work so she couldn’t watch a show. Her upset seemed way out of proportion to the problem, even for her. Then again, we all have things like that sometimes in our lives. There are times when she seems unreachable and that is when I get scared. I know that can be part of autism, but she is so often still reachable, that I can feel desperate and despairing and scared when I can’t reach her. 

It is useful to hear myself say I’m at my wit’s end. That always seems like a challenge. Really? Am I really out of ideas and resources? Of course not!! But maybe I need to return to basics and remember the key aspects of Son-Rise. I need to wait for Sarah to be ready to connect. If it is an ism that I can join (rather than one I really don’t want her to do, such as spitting), then I should join. I did that briefly yesterday and she did instantly connect to me. It was still within an ism, but it was an ism that included me and Sarah had a sparkle in her eye. 

I don’t know what more to do when Sarah is totally unmoving when we need to go somewhere. Do I sit next to her and not move? Maybe. But it is an important skill to be able to leave a place when it is time to leave. When Sarah was younger I could just pick her up, but now that is not really an option unless it is an emergency. I hate these moments. They happen at least once or twice a day on most days. I am tired of them. I don’t know what to do. I wish they would stop. 

Honestly, perhaps a large part of my difficulty at the moment (and for the past while) is that I’m fighting the truth of the situation. I put in sooooooo much time and work and love and creativity into getting Sarah where she is now. So much. As did so many other people. And now I feel like that should have been enough and I should be able to coast, thank you very much! But I can’t coast. So I’m being just as reticent as Sarah when she doesn’t move even when it is time to go. It is time to go, to up my creativity and plans, and I’m here essentially protesting that my pajamas are comfy and I would rather not change what I’m doing. ARGH!!!! So humbling to see when I am exactly the same as Sarah, just in a different format.

Now for the flip side of the update. There were some heart-warming, wonderful moments.  

One afternoon I left Sarah on her own for a little longer than I maybe should have. She came downstairs and asked if I liked her nails. She had reached the nail polish that I thought was out of reach and put it on her toenails and fingernails. I’m impressed with how well she did overall. Unfortunately, my bathroom rug now has some traces of pink. I don’t want her doing such things without asking me first. However, it really was impressive that she even thought about doing it and then did all the steps necessary to do it. She even told me she was helpful for doing it! She sang an adapted Daniel Tiger song, “It’s ok to wear nail polish, it’s not ok to hurt someone.” Indeed.  

There will be a sock hop soon for Sarah’s class. Another parent found a pink jacket from a Grease costume and it happens to have Sarah's name on it. A few girls invited her to be part of their Pink Ladies group. They sent home nail polish (this was after the nail polish fiasco) and cats-eye glasses for her with a handwritten invitation from one of the girls to Sarah. This is so sweet. This is why I love her school. I thought I found a perfect outfit for her (plaid capri leggings and a cute white blouse with poof sleeves that have a stripe around them) and a plaid dress as the backup option. It turns out she wants nothing to do with my perfect outfit, but she loves the dress. She also has a knit hat that someone made for students of the St. Anthony’s program. She loves wearing it and she looks super adorable. In a week with challenges, it helps to have her looking super adorable. 

Amy had her 100th day of school and went all out with covering her shirt with 100 stickers and her pants with 100 stickers and stacking 100 blocks.

May you have adorableness and hope even if things feel really hard.

February 3

Amy didn’t have school Monday and Tuesday for teacher in-service days. Wednesday and Thursday both girls had off from school due to the extreme cold. Friday they had snow days, though the announcements arrive until I already woke everyone at our usual early time. 

Amy got a palate expander Wednesday morning and was very much a poor sweet baby for a few days. Her mouth hurt and she felt like she could hardly eat anything because all food gets caught between the roof of her mouth and the expander. It is better now, though her eating is still limited in range. She was also sick with a cough. For Sarah’s birthday dinner at a restaurant, Amy spent almost the whole time just trying to fold herself into my side. Sarah had a great time and was in sparklier, happier energy than she had been for a few hours leading up to the dinner.

One day Sarah was determined to go on a trip. She started making a pile of things to take on the trip. When it seemed like she was done, I put those things away. She got them out again. Then she took my purse down, found my keys, and put her backpack in the trunk of the car! Another time she wanted to go outside and said she would look both ways. This was a warning flag about her intended activity because the normal limits for playing out front do not involve crossing any streets. I asked if she could stay in the normal limits. She wouldn’t guarantee it. So I blocked the door and wouldn’t let her out. She is really into pretending to go places with her great aunt and uncle (J. and T.), especially going to church with them. I’m not sure where this came from except that in one of our photo books there is a picture of her great aunt wearing a leopard print dress and Sarah loves this dress. She now almost always addresses Carl as J. or T. because she wants him to pretend to be one of these people. Sometimes she pretends to be the other. She put on one of Carl’s button-down work shirts and pretended to be T. This is all fine unless it means she will leave the house on her own and try to walk to a church! 

Sarah is now 12. It hasn’t been the smoothest week. Not the roughest. About normal. But I have been in a mode where I felt annoyed by many of her routine things that she says or does. Then I felt bad for being annoyed. Then I felt more annoyed. So while the week has been generally easy, cozy, and slow, it has also been a bit difficult.

Yesterday we went to a party to celebrate Imbolc, the day in the middle of the winter solstice and the spring equinox. The party involved a bonfire and good food. We all loved it. Sarah loved tossing little bits of wood into the fire. 

Since Sarah seems to continue to handle baked dairy, she is keen on getting to Dunkin’ Donuts. We passed one on the way to the party. She wanted to go. I said no, but that at some point we could go. Since we usually go to Starbucks for snacks after they get their hair cut, I said that maybe the next time they got hair cuts we could go to Dunkin’ Donuts. She promptly said, “Oh! My hair is getting long!” It actually is, so we may go for a bang trim today. On the drive home from the party the girls sang a duet about getting donuts: “We’re going to donut land, we’re going to donut land, we’re going to donut land tomorrow!”

Wishing you easy and delicious eating.