Julia had a very bad day at her program on Friday—perseverating on her body that she finds many, many faults with, making lots of self-harming statements, banging her head against the wall, putting hands on a staff member.  After an initial melt down with lots of shouting, it took 40 minutes for her to gain some calm which is far longer than usual.  She took a walk with staff which seemed to restore equilibrium, but once back at the program’s building, she slipped back into melt down.  

And I did the unthinkable.  I was not available and could not be immediately reached.

I am not feeling badly or guilty about this absence, but the fact remains, her team tried to call and text me and I was not available—available to talk to them, available to talk to Julia, available to come and get her.  And my unavailability made everything worse.  And she does not have the tools she needs to self-regulate, to regulate with the help of people who know her well.  There are times when she can not regulate without my direct intervention.

So many years ago, when Julia came home from China, I went back to work after taking maternity leave.  I was back at work for a very short time when David and I realized that Julia needed a full time parent.  I became a full time mom.  Then, after we moved from Indy to Madison and Julia was settled in Franklin School in a great program, I looked to go back to work and never found work that was flexible enough to accommodate frequent, sometimes daily, calls from school.  I found work to do, piecing together gigs but never again did I work the 9-to-5.

All during that time, I made sure that I was available to be called, to come into school or to take her home as she needed.  When she couldn’t ride the bus or van, I drove her to and from school.  I’ve always driven her to therapies, music lessons, rowing and art class, always staying as monitor, as backup.  Just in case.

Julia came home at 5.5 years old; she will be 22 in January.  I’ve been at this intensive parenting 16.5 years, 13.5 years alone, with no termination date in sight.  I don’t deserve special notice; I know dozens of parents like me. This is the reality that I had no idea was going to go on as long as it has. This is what Julia needs and what is expected of a single mom of a young person with her flavor of disability.  I chafe against the restrictions sometimes and indulge in my life without Julia in stolen moments.

So, yesterday I had day long rehearsal in a performance space that has no internet or phone reception.  I thought I had it all covered—I left the house after Julia left for school and expected to return home before the basketball bus dropped her off.  This is the way I plan most of what I do for myself. She has had some good weeks at her program with everything going smoothly.  Bad days had been easily managed because they were not that bad and the staff knows what Julia needs.

So, when I went outside during the lunch break yesterday, I was surprised to find a frantic email describing how teachers and staff had tried to contact me, left messages and had not heard back from me.  

I made calls, I got in touch with school staff, I talked to Julia’s therapist who was willing to field any further immediate crises and I promised to see if I could skip the very end of rehearsal to pick Julia up before basketball was finished.  I was able to do all of that, partially because my part in the production is very small and slipping away during the end of dress rehearsal caused no harm.

The dilemma of eternal availability unsolved.  And I had and have no idea of why Julia had such a bad time yesterday—she had left the house in a seemingly great mood that morning.

This morning Julia was able to articulate that she was still not in a good mood.  No behavior manifested, but she was able to tell me that her mind and body were having problems.  She wanted to get out of her feelings but, at the same time, she wanted to hold on to feeling miserable.  She felt like this was the worst day of her life.

My immediate gut reaction was to try to do something to make her happy, but I know better than to imagine that I have that power.  Instead, I suggested that we figure out a list of things to do to get through the day with the goal of not feeling any worse by the end of it. And so, we wrote down “Julia’s sad day list.”  Julia did not immediately buy into the idea; however, she could not resist the indulgent ideas that I began suggesting.  

I put on a soothing sound bath that she likes, and we did morning meditation. She finished meditating and curled up to nap.  We practiced cello and ukulele for a short while to prepare for this afternoon’s lessons, our only responsibility of the day. I emailed her music teacher to let him know that Julia needed an easy and undemanding day. I asked Julia about food and Julia wanted to make a BTS holiday meal she found in a fan magazine.  I found a recipe for Japchae, the BTS Korean noodle dish, and shopping at an Asian market and cooking this dish went on our list.  A bath, a bit of garden cleaning, a Korean dessert and watching Hocus Pokus 2 rounded out the list. We are half way through the day and so far, so good.  I’ve been talking about how everything we are doing today are tools for regulation even the list that gets to be checked off one item at a time. 

But the answers to questions of Julia’s self regulation, her independence, her agency and my desire to engage in activities that do not involve her remain elusive.