Shelburne, Vermont. Definitely morning frost. And thank goodness it also turned chili at home before we left. The extra sweatshirt thrown into the bags at the last minute will be used!

Ed and I are ensconced in a sweet and small B&B owned by an architect turned painter and her husband, who is very nice, but I haven’t drilled him on his work life. Yet.

Julia is at Zeno Mountain Farm for a five-day, four-night weekend. She went to their fall weekend last year and was invited back for this year.  (She has not yet been invited for summer camp, which is my goal for her. Once invited, she can come up every year for the rest of her life.  Everyone does, and thus, the wait is long for a spot.) She helped me pack her stuff and then re-pack when we found out how cold it was really going to be. The ride up was pleasant and uneventful until we got to the country road part that goes up and down a mountain for almost 30 miles, okay, a small mountain. Julia began getting angry, anxious, and extremely unpleasant.  At one point, she lobbed a sweater at Ed, who was driving. She spent a good deal of time swearing at the mountain, the road, and us. By the time we arrived at the Farm, I had to spend time with her trying to figure out what she wanted to do. (Not at all sure what we would do if she wanted to not go to Zeno altogether.)

I was unsure if we could leave her.

And then she went through the big farmhouse doors, and someone said hello to her. And in almost an instant, or at least a few minutes, she was all smiles. Hugging two people she knew, ready to hand off her meds to the nurse and go to her assigned room on the third floor. When she came downstairs, she was ready to have us leave. She gave us happy hugs and went off to a giant bay window with couches in front of it to watch the sunset. 

What an incredible relief it was to see that change!  Of course, I wonder if there was a way to avoid what came before.  So much suffering for her, so much worrying for me. I held onto the anxiety inside of me for a few hours.  Finally, with an artisanal pizza and craft beer in front of me, I relaxed into the weekend.

We walked in Burlington, along their main streets and the coast path. We walked to a very good Vietnamese restaurant for lunch—Pho and a Bun. Later, in the evening, we saw the comedian, Margaret Cho, and her opening act, and then to a “French” café for a late supper before winding our way to our B&B. 

I am pretty happy today with plans that include the gym, walking at the Shelburne Museum, a nap, and some earlier dinner. A quiet day with hopefully some reading and writing.

What I notice about myself: When people ask me how I am, I immediately begin talking about Julia—she is doing well, she is having a hard time, more of this, less of that. Rarely does anyone push further — are they accepting that I have no other barometer of my/our condition? Possibly. When I am talking to someone who does not know Julia or who is not involved in that part of my life, I can have very little to say. I tend to describe what I am doing instead of how I am feeling. I don’t complain except to my friends. I feel so blank, boring, uninteresting even to myself. Even my therapist has to ask pointedly about me, myself, my writing, or something else she picks up on. Even with her, I do not default to myself.

I don’t imagine that I am alone in this sort of response. Am I just another caregiver of an adult child with disabilities, and it is her who eats up all the care available to anyone in my life? It doesn’t feel healthy, and I don’t quite know how to change that.

Later. Late afternoon.  Ed and I were touring the Shelburne Museum, a 45-acre estate turned historic educational site, when the phone rang.  It was from the camp.  Julia had troublesome behavior and she wound up punching someone in the ribs. There is no hitting at Zeno, and I had to pick her up.  

We did. Honestly, wrecking the plans for the day, as loose as those plans were.  Our innkeepers agreed to squeeze a trundle bed into our very small room—fine for the two of us, just very small for 3. I was able to change our dinner reservation to include Julia, which was a real gift; everything decent is booked up here during fall leaf weekends. We will try staying until Monday as we planned.  Maybe go back to the Shelburne Museum tomorrow. We were going to wake up very early tomorrow to see the dawn. I don’t know if Julia will go for that.  

I am disappointed on multiple fronts: for me, for Ed and me, and for Julia who did not make it past the amount of time she is usually at respite weekend.

I was going to write about some good stuff that I haven’t written about, and maybe I still should try.

Julia has been taking some very encouraging small steps that, to me, demonstrate some maturation. At a doctor’s appointment for a check-up (MassHealth allows check-ups every two years for adults), Julia was able to talk about some of her own issues, including birth control and what she thought was a rash. She listened to her doctor talk about her weight and body image. It was not so long ago that she would not have listened at all. She also had a big blood draw (4 vials of blood) and a vaccination.  She handled both of those incredibly well.  How wonderful to see her comment on the butterfly needle that the med tech used for the blood draw. There was a time when multiple nurses or techs plus me needed to help her through those experiences.

I attribute some of that growth to our COVID days.  By the time the vaccine was available, Julia wanted it as much as we all did. Her desire and acceptance of the pinch of a needle pushed her to a new level. Fear diminished, which was and is incredible. Julia also doesn’t need extra help to get her through her bi-annual teeth cleaning.

The Price Center is offering COVID and flu shots to all its clients.  I asked Julia if she wanted to take those shots at her day program. I had no idea if she would agree or want me to be there with her.  To her credit, she agreed with some enthusiasm to The Price Center’s clinic. And I have no trouble letting go enough to have her get the shots without me. If she has challenges with getting the shots, she will be in the right place to deal with them. It has been a very long road from the child who needed strong arms to hold onto arms and legs for every blood draw and shot to the young woman volunteering to line up with her peers.  

I am grateful for these small steps. They give me hope. Julia and I talk about small steps all the time these days. As many as she and we take, there are a mountain more before she can be independent. There may not be time to do them all.

On the way back from Zeno, we talked some about whether Julia ever wants to go back there. The folks who run the camp were very re-assuring when we left— that they would welcome Julia back, that this kind of behavior happens often to people during their first few years coming to Zeno, that if this was a longer camp, they would have asked that she go home or be with me for a day or so and then come back to camp. They called it a reset. This weekend being only 4 nights made that impossible.  I was touched by their concern and devotion to having Julia as part of their community. They just could not support physical violence.  I had been campaigning for Julia to go to Zeno for more than 6 years. I loved their mission and what they said on their web page. The community is almost better than I imagined.

Julia is not sure she wants to go back. She said she made a scene. I think there is some embarrassment on her part, which I have not seen before. I repeated what the Zeno folks told me—she heard it at camp as well. She needs to want to go back. I told her that to go back, she needs to work on regulation beforehand. I can help her, and so can her therapist, Michelle, but she has to want to do it. And I know that is a lot for her.

On another front, Julia finally has a new DDS Service Coordinator.  We lost the last Coordinator in May. He was not very good—promising and never doing, never coming up with a single program or idea for Julia, late in sending her “packet” to programs when I asked him to, and needing multiple emails and calls to get any response from him.  Since May, a supervisor has been in charge of Julia’s service. She was only a hair better than the Coordinator, but I am sure she had all of that Coordinator’s clients plus whatever supervision tasks she had.  I’ve kept up my queries to her, emailing every ten days—a pain, I know, but that sort of constant making a pain of myself seems the only way to get anything done with DDS.  I did not want her to imagine that I would be willing to wait a moment longer than absolutely necessary to get some help.

I have questions and a few distinct things that the old Coordinator said he would find out about or set up or do for us that he never did.

So, Julia was reassigned less than two weeks ago, and last week, I met with the new Coordinator, M.  I have to say I am cautiously optimistic.  She seems interested and told me more at our meeting about services and possibilities than the old coordinator told me in more than two years.  Cautious, not yet optimistic.  M came with a very empty file.  Oh, there is all the preliminary application work that must still be in Julia’s online file, but there is almost no paper trail.  No notes at all.  M was given a file with a single page in it. So, we begin as if it is the beginning.