May 26

As is to be expected, hair washing (especially after writing about easy success) was not so easy last Sunday! I implemented what I thought was our new formula, and perhaps you heard the screaming from wherever you were. This past Thursday it was time for washing Sarah’s hair again. She screamed and protested loudly and repeatedly at the mere suggestion. I felt frustrated and so very tired of this whole scenario. Eventually she agreed to yet another time frame before we started the bath, but with the provision that when the timer went off she wouldn’t scream. True to her word, when the timer chimed she stopped what she was doing and got in the tub, without my even saying anything. I got the same agreement from her about not screaming when it was time to wash her hair and she again kept her word. So maybe that is an added piece of the ever-shifting puzzle.

Last night with their amazing sitter A, the girls made Kitty Bingo. They have now been awake for an hour and have yet to even come downstairs for breakfast. They have been playing Kitty Bingo this whole time! At one point Amy ran downstairs to tell me that they had gotten bingo at the exact same time and that there is nothing better than a tied game of Kitty Bingo. Long ago, in our earlier Sarah-Rise sessions, we used to loosely track how long Sarah could attend to an interactive activity. It used to be that ten minutes was an achievement. I realize that with anything I can always remind myself of how things used to be and thus be in awe of where we are now, because nothing has ever been a given with Sarah. Yet, at the same time, I also have an assumption that she can do anything; it just might take a long time to get there. Of course she will learn to swim. It might take years to learn, but she’ll get there. 

Yesterday Carl got out the girls’ bikes. It took Amy a little time to get back into her groove of how to ride, but then she really got it and was doing laps around our small block. Amy is riding a bike with pedals and no training wheels. In the past, Sarah had no interest in learning to ride her balance bike, but yesterday Carl could see a change in her and predicts that she will learn to ride a bike with pedals and no training wheels.

Both girls are getting more capable with getting their own food ready, especially for breakfast or snacks. Amy often reminds me that she doesn’t need my help with various things. Sometimes this is exciting and wonderful. Sometimes I feel like I am essentially messing up every other minute, which doesn’t feel great. This is new territory for us, see-sawing between independence and dependence without sign posts or warnings. I know this is how it goes as kids grow, but that doesn’t make it much easier. 

May 19

I dare to say that we have made progress regarding washing Sarah’s hair! Sc had used a timer to indicate when the hair washing would begin. That seemed to help, so Carl and I have implemented that strategy too. Carl also had the idea to move forward more quickly and directly rather than letting Sarah play for a long time first. This week I was able to do a mid-week wash with minimal fuss and Sarah even tipped her head back into the water when we were done, which is something she normally does NOT do in a bath. This whole venture also received assistance from Grammy a couple of weeks ago because she knew of our struggle and commented to Sarah about how nice and clean her hair looked after her bath. After each successive bath, Sarah has told me that her hair is clean and shiny. I tell you, it takes a village to make these things happen!

Sarah cut her hot dog almost completely by herself! (And at the next hot dog meal she opted to just pick up the whole thing rather than bother with cutting.)

One night Amy was upset at bedtime and Sarah said, “it’s ok Amy” or something like that without any teasing in her tone. It was simply kind. I pointed it out to Amy, who paused in her upset to thank Sarah. That was a small miracle of a moment. 

Amy’s moment of upset taught me that I need to regularly make time when Amy is freshly tucked into bed to check on how she is feeling about things. On this particular night, when I stood up after kissing Sarah goodnight, I was surprised to see Amy looking sad, because she hadn’t been sad a minute ago. I asked if it was about a certain thing. It wasn’t. I just stayed looking at her and waiting. Then she burst into tears and told me about a worry concerning school. Not only was she scared, but she had been trying to hold this fear as a secret rather than share it, so she had had several nights of worry and not sleeping well. My poor sweetheart!! During the day she can easily keep moving on to the next thing, but just before sleep is when the thoughts and worries surface, so that is what I want to make sure I witness and allow to have space.

This weekend Amy and Carl were away for Girl Scout camping. Sarah and I camped in our backyard. The first night it rained a lot, including a few unexpected drips onto my neck, but we were mostly cozy and snug. In the morning sunshine I opened up the tent doors to get some fresh air. Somehow at some point, a bird managed to get poop in the center of our sheet. How on earth?! (did it fly through when we weren’t looking? or did it just angle its delivery with skill and precision?) Sarah wanted to spend all day in the tent enjoying the patterns of our (clean) sheets, but I made us take breaks so we didn’t overheat. We walked to a store to get goldfish crackers. Then she wanted to be pushed in the stroller while she ate the crackers. We did that on our way to her favorite intersection for watching traffic. It has been a very quiet weekend. It was wonderful to have so much easy time together and to be so snuggly in the tent at night. It will also be wonderful to be in my own bed tonight. Sarah is eager for Amy to be home so they can play in the tent together. Earlier in the week Sarah made a sun at school and each ray was labeled with something important to Sarah. The only legible word is “Amy.” (Normally Sarah’s handwriting can be quite legible, but not with this specific item.)

May you have a kind witness for the secrets weighing on your heart, and may you have a cozy snuggly spot to rest.

May 12

It seems that I was mistaken about my cluster headaches being done. I’m on my second round of prednisone now and hopefully this will do the trick. I continue reading the book about how to change my life experience so I don’t get headaches, but I am much more capable of paying attention to anything and making life changes in any way when I’m not dealing with excruciating pain/fear of pain/dread of sleep/exhaustion. So prednisone it is.

Sarah’s school program had their Inclusive Games on Tuesday. Each child from the St. Anthony’s Program is paired with a neurotypical child from their school. They do relay races, ball throws, soccer kicks, and the 50 yard dash. Their scores are for the pair. The cheering is loud and enthusiastic. Then we all spread out picnic blankets in the grass and have lunch together. It is fun and relaxed. It is also often hot and there is a ton of standing and waiting. Last year and this year, Sarah was wilting by the end. But she loves the day and looks forward to it all year. She loves her special shirt that she wears for the day. She loves the ride on the big yellow school bus. Last year, Sarah’s partner had been invited to pair with someone else (Sarah was in second grade last year and is in fourth grade now so her neurotypical class is different), but was unable to attend and was heartbroken.  She was thrilled to be asked to partner with Sarah this year. This, again, is why I love Sarah’s school program. There is such true joy, acceptance (because what is there even to accept? this is just a person to enjoy!), and thoughtfulness from the teachers, staff, students, and parents of other students. 

Amy has started feeding our cat Olivia for some of her meals. Usually this has been for dinner, which is simple because the can is open and she just needs to empty it. This morning she wanted to give Olivia breakfast, which involves more steps and requires the help of a grown-up for some of it. There were many tears of frustration about how she didn’t know how to do some things. Doing things for the first time can be hard!

Sc has some magical skills and was able to give Sarah a mid-week bath including hair washing but not including any screaming. She may have a new job! Sarah and I just had several minutes of a discussion/Sarah-scream-session because I said that she needed a bath with hair washing today. Doing things for the millionth time can be hard!

Sarah has a book that includes a reference to singing “Kumbaya.” Sc taught her to sing the song and it is Sarah’s new favorite thing to sing. She has such a sweet, earnest voice. Sometimes she picks up her ukelele to strum along. I’m thinking maybe she could learn to play it on the piano, and she usually sings her pieces as she plays. I do have a short video of her singing but it is too big to put in an email. If anyone wants to see it, just let me know and I can text it to you.

Some lessons need to be relearned many times. Carl often has ideas of things to do that he thinks will be fun. Sometimes the girls don’t think it will be fun even when they have no idea what it is. Sometimes I worry about all of the aspects of something that might be hard and thus don’t think something will be fun and would rather stay at home. The thing is, usually Carl is right. Yesterday he wanted to go to a music festival called Pittonkatonk. I thought I would be overwhelmed by the crowd and herding children. I thought I might feel awkward and out of place. I forgot that this is Pittsburgh and that even for a regular trip to anywhere, it is extremely likely that I will see someone I know. Luckily, Carl prevailed upon all of us reticent doubters and we went to Pittonkatonk. We had a wonderful time and saw soooooooo many people that we knew, some of whom are among my absolute favorite people in this world. I am already looking forward to attending next year. Sarah loved the bubble machine. She also told Carl at one point, “I am so happy with this band.” Amy enjoyed a wooden chicken on a stick and seeing some of her favorite sitters. I would like to say that we will all remember this the next time Carl suggests something new, but I predict that we will still require some nudges. I do know that my life experience is better thanks to Carl and his enthusiasm for trying new things.

Happy Mother’s Day to my three mothers and to all of the mothers reading this, whether you are a mother to children, animals, a garden, a creation of any sort, students, your own sweet self, your unfolding adventure of a life… May you be surrounded by some of your most favorite people. 

May 5

Snuggly school mornings have continued to go well. Now we just need to figure out a solution for hair-washing. We only do it once a week for the girls, but now Sarah clearly needs it twice a week. Almost always, the process involves lots of screaming and resisting. This is true whether we allow for two hours of no-pressure bath play time first or not. It would be so nice if it could be easier. 

Amy and Carl ran the Kids’ Marathon (1 mile) yesterday. Amy got her best time yet, despite briefly wiping out due to a missing brick in the street. Last weekend we all went for a training run. Sarah and I did a gentle run from our house to a playground a few blocks away. I was amazed at how far she ran. We have a tentative plan for next year that we will all run the Kids’ Marathon. I will need to start training now!

We have had a lovely visit with Grammy and Granddad. Perhaps you heard the shrieks of delight as they arrived, bringing some favorite stuffed animals to visit too. 

I think my cluster headaches are back under control thanks to a round prednisone. I still have tiny traces of them, but that is usual. My body is so familiar with the headache pathway that it can manufacture it on a low level on demand. I have had success with getting the mild traces to abate by focusing on my breathing and using the Alexander Technique. I also started reading a book that a friend recommended. It is by someone who cured himself from cluster headaches. It seems to be about paying exquisite attention to what takes you away from being really present and letting that go so you are fully present most of the time. So I am paying more attention more often to my levels of tension or lack of full breathing. 

Sarah’s first swim lesson as a Turtle 1 went beautifully. It is a good reminder that she can learn anything, even if it takes a really long time.