A week, not quite, most of a week of forced quiet. I took last Wednesday off feeling the beginnings of something like being sick. I missed a Shakespeare class at Harvard and a choir rehearsal in the evening.  I slept a good deal of the day, wrote emails, figured out a new drug insurance for myself and checked on Julia’s, and started the book club book for this month. And was quiet.

I stayed home on Thursday, not going to see Cheshire and the boys.  Honestly, if it were not for the drive —a good 45 minutes to an hour and always in traffic— I would have gone for a short time. I was on the cusp of feeling better but not completely there.

Writing this, I realize that my RSV bout in January is influencing my behavior. I am slightly fearful of the good health that I have enjoyed.  Last January showed me that I could get sick. Good and sick.

And so, I stayed home to take care of myself, again being quiet for the day, catching up on small tasks that have slipped through a life with cracks and working on housing for Julia. 

I am using AI to gather some of the information on agencies that run group home and supported housing. Without a doubt, I will research further any place that appears on first blush to be suitable, but AI is a tool to gather what is posted online on one page, not just an agency’s online information but complaints or praise posted on parent discussion boards and local or state government websites. Rents, condo prices, food, and other expenses are really hard to find. As are descriptions of exactly what supports for what needs are put in place. And what, if anything, staff facilitate that is outside the necessities of survival and getting clients to and from their respective programming. This will take my own digging and talking to people. It is, however, helpful to get what can easily be gathered all together.

It is work begun.

Then on Friday morning, feeling quite back to myself, I had endodontic surgery on a partially failed root canal. And I completely underestimated the procedure and the recovery. Yes, I read the surgery prep page and the recovery page, but I was left with the impression that it would be similar to a root canal, which has laid me low only until the novocaine wears off. This procedure, however, involved cutting into the gum to remove an infection, stitches, and pain. Plus, post-surgery instructions to consume only liquids, preferably with protein, until my return visit on Tuesday, little talking, no singing, and a half-face that is definitely chipmunk-like. I go back on Tuesday for a healing check and stitch removal, and if I am lucky, I will be “released to sing”—his actual words after I grilled him about singing.  Apparently, singing at full voice, especially high notes, can cause the stitches to burst open—a picture that the dentist painted that I could imagine all too clearly!

We have a music Sunday next weekend at church, and choir rehearsals are frequent and intense, which is usually completely fine. But not able to sing since Friday, I had to explain that I would be reduced to listening to rehearsal for the weekend and possibly on Wednesday. I was almost embarrassed by the extent to which I did not understand how involved this procedure was. I should be fine by next Sunday. Had I understood how quiet I needed to be, I would have put the procedure off a week. It needed to be done, but it was in no way an emergency. 

So, again for the weekend, I was quiet and laid low by a bit of pain. 

The weekend was a good amount of time for Julia to be somewhat quiet as well. She did her 3 hours of music classes on Saturday but otherwise puttered around the house with me, washed a mountain of laundry, her laundry that I helped to fold and prompted her to put in each appliance, and watched anime. There is some good stuff going on with her, and some of what is not so good—hard to describe or quantify it all as it comes together or separated by minutes.  

Together, a few weeks ago, we decided that she should go back to doing work with Donalee Marcus. The work right now is visual worksheets, the kind she was doing for a few years before we moved to Massachusetts and up until the COVID shutdown. The work helped her to organize and grow some executive function skills at the time, and my hope is that they can help her again.

“Donalee work” was part of what Julia did every day for years. At home after school and therapies, she practiced cello, did some reading and math, and a few pages of Donalee work.  We followed this routine at home, and when we travelled, I thought it provided a grounding for Julia. We lost that grounding during the shutdown and have never gotten it back. There was the awful time during the shutdown when there was chaos all around us, when school was the erratic Zoom experiences, when we saw no one, etc. And Julia shut herself away from social interactions, from learning, and growing into an adult.

Recently, and with Michelle’s, Julia’s therapist, help, Julia may be unfolding some.  It is not easy work, and we are trying to work with multiple modalities to encourage whatever change and growth we can.  There is still a wall that goes up whenever we hit too close to a trauma trigger, but slowly, extremely slowly, there are cracks that appear in that wall. And that possibility of reduced trauma and anxiety and possibly an embrace of the work of independence keeps me going.

However, no matter the amount of good, there is the other.  Transitions continue to be a challenge. I have not always been patient with the amount of time Julia takes to follow directions, to get to the table, or get dressed. My impatience can result in me just doing what I am waiting for Julia to do. And that is why Julia doesn’t do more cooking. I just don’t set aside hours and hours to make a simple dinner. And it drives me crazy when she takes an hour to put together her lunch, but that I allow, sometimes biting my tongue and waiting her out, as she spends the better part of the evening putting leftovers in one container and apple sauce, cherry tomatoes, and a granola bar in another.

Morning is an ongoing battle. Should I say challenge? Whatever it is, this morning it became more difficult. She hates going from the house to the bus or van that comes to get her. When I have to drive her, she is no trouble at all. I’ve done and arranged all that I can—waking her up early enough to get dressed and ready, having breakfast on the table, not asking her to do much in the way of morning chores other than self-care.

Part of the problem is the erratic nature of transportation.  Julia is supposed to be picked up around 8:15 for her program that begins at 9. Actually, the pick-up window was 8:15 to 8:30. A few weeks ago, the bus or van arrived chronically and erratically late—10 minutes, 30, 45, 90 minutes.  After a lot of complaining up the supervisor ladder, bus routes have been modified, and her ride now arrives too early, sometimes the bus showing up before 8:00. I can adjust my wake-up; however, I am not always able to jump out of bed bright-eyed and bushy-tailed before 7, and there is no expectation that the bus will be in front of the house before 8. Maybe tomorrow it will arrive at 8:30 or 8:45, leaving Julia waiting from 7:45 until possibly 8:45.  She does not react well to that kind of waiting.

And then there is the actual moving from house to bus. When Julia spies or hears the bus pull up, she starts escalating.  She curses, she makes threats (mostly about how she will destroy those driving and riding the bus). She delays her departure as long as she can or she goes still (the other day she stood on our steps for almost 5 minutes without moving). She is anxious, she is furious.  We talk about his behavior constantly, sometimes with her therapist, always when she is calm. We talk about how to de-escalate, we talk about the why’s. We talk about how to hold on to the spirit of the morning just before the bus shows up because usually, almost always, that spirit is calm and happy. None of that helps.

Julia—anxious and furious, swearing and wishing folks harm—is impossible to get to.  She could be a million miles away for what I can say or do. I give her the option of staying home if she goes to the van and tells them. That option sometimes snaps her out of behavior. She always refuses that option. She really doesn’t want to stay home, she likes where she is going when she gets there.

This morning she crossed a line. She left the front door complaining, walked down the short walk, stepped into the bus and took a swipe at the driver. He ducked, so no contact was made, but I know her escalation and I know how hitting someone is a great release for her. I don’t think, or at least I have not seen, Julia attempt to hit a driver or bus attendant before this.  I saw her behavior and yelled at her to get off the bus because she was going nowhere. She quickly sat down—all fury spent—and put on her seat belt.  The driver tried to make peace, saying well-meaning things, all wrong for Julia. She wanted to go to her program and the driver wanted to take her. I let it happen.

And I was left feeling the air sucked out of my lungs.  Every step forward fills me with optimism. Not that everything, just everything will be better, will be good. But the optimism of a step forward. Maybe we are finished with something of a challenge, maybe one step will follow another.

And to be fair, and to the extent that I know Julia, what happened with the bus driver has nothing to do with her working with her therapist or doing Donalee work or some of the other things we work on. There is no causation, not even a correlation except that everything always is connected, except that these steps back or to the side slam right up against my small amount of optimism.