Whenever I have the time to write, I swear I have nothing to write about. It is when I have a dozen other things, when I have to ignore something very important that inspiration hits. I am also pretty good at working up to a deadline, missing it by a day or so, and laboring as if all hell will break loose if I don’t do as I promised. This seems to me an undesirable lack of moderation, of discipline, of getting into that Buddha inspired journey of the middle way.
But this was not what I sat down to write about.
Quick summary: We are in an okay place.
Julia had the week off—never sure if it is late winter break or first spring break. My plans for the week were to do what needed to be done and meet with those needing meetings especially therapies at the beginning of the week and then go somewhere—we settled on Salem where Julia has her eye on a few punk/goth stores—for Friday and Saturday. And if we were having a good time, staying until Sunday.
Last summer I wrote a status report about Julia. It was rather grim but I needed to get it all down in order to understand where I thought Julia was, and to help me to begin to wonder in some sort of a systemic way, what to do next, where she was going, what I should be striving for, fighting for. And what the hell was the goal!
The big question that was and remains: What will happen when Julia is finished with Community Connections (“CC”) next January on her 22nd birthday. [In Massachusetts, students with disabilities can stay in the public school system until their 22nd birthday in compliance with the federal IDEA. After high school, students can enter a transition program and in Newton, we have Community Connections. The purpose of the program is to teach independent living skills and job skills. Students can then transition into employment or into the adult services programs run by the state.] While services for students with disabilities is guaranteed until the age of 22; adults with disabilities merely qualify for services. Depending on the state, the availability of funds and the willingness of the powers that be, students may or may not get services. Even living in Wisconsin and Massachusetts, where there is decent to good willingness to provide services, it is always necessary to advocate for services.
For an adult with disabilities nothing is guaranteed. And all services are so much more dependent upon money and the whim of the legislature. So, strong advocacy is only more important.
Winter break has been over for three day. I mean, this is the third day, and I have this overwhelming feeling of wanting to be alone and quiet. This morning after Julia boarded the school van, I took a deep breath and bathed in the house silence. I did not want to say a single word to anyone, and the usual morning pleasantries to the van driver (who is a very sweet man, by the way) were an incredible effort. Peculiar thing is that Julia has had three very easy mornings following a relatively calm and easy winter break.
The only challenge of the break, and indeed of the coming month (or so), is that she could not do her regular activities. There was no rowing last week and her zoom theater workshop was on break. The rowing class has now been cancelled for at least a week with the possibility of an extension. Oh, how that email read like the first school closings in 2020! The theater workshop which was rumored to go back to live meetings will stay on zoom, starting in February. Both these activities are important to our week, to her sanity. I hate to lose them for any time at all. She will still have meetings with her therapist and her art mentor. And for these, I am so grateful
Whew! Yes, I’ve gotten this far. This far into this year and this far into life. But I’ve been wasting more than my usual share of days dithering. I wonder if I am alone in this? Courtney Martin, whose, newsletter I subscribe to, called this a “liminal pandemic moment.”
“We’re opening back up. We’re not opening back up. We want to open back up. We sort of actually don’t. We forgot how to socialize with a wide variety of people or in larger groups, so it all feels heightened—like waking up from a nap and being violently thrust into a brightly lit room of smiling, chatty people.”
Well, I am not intending to burst into any rooms of chatting people in actuality or even figuratively. Still, I feel the liminality of the moment. We are gathering tomorrow with our ‘pod’ from the last two years—Cheshire and Justin, his parents, Julia and I–which is quite comfortable. There remains, however, the rest of life–transitions, community, and what the future holds.
20 years. I remember so well going through the metal detector at the federal court build in Indianapolis. The security guy telling me that the world trade center was hit by a plane and we assured each other it was a fluke. A mistake. Then, upstairs to my office and then into a judge’s chambers to watch the second plane hit and the buildings collapse on tv.
I remember trying to wrap my head around the unimaginable in the midst of distress, chaos, sorrow and worry. But a tender memory from that time, in the days and weeks afterwards, midwest friends, neighbors, colleagues and acquaintances, remembered I was from there and asked how I was and how my family and friends were. I had lived in Indiana since 1989, and it was never that easy being from New York. People could be downright mean at times, talking about where I came from as if it was the pit of hell. Not everyone but enough to make David and I shy about that ‘where are you from’ question. During the days and weeks after 9/11, everyone became a New Yorker. Suddenly, I was just like them because they were just like me. I hadn’t expected that and I felt for almost the first time there, that I had community.
Last year everything shut down, quickly in a single week. It was a dizzying time of cancellations and closings. During the last two weeks, we are in the middle of openings. I remind myself repeatedly not to forget—not forget how closed we were and how hard that was, not forget how slowly we opened and what an unusual challenge re-opening has presented to us.
I appreciate that Massachusetts is opening slowly with much deliberations. Probably not perfectly, but what has been perfect about this time? The mask mandate expires on the weekend and I am grateful that Governor Baker announced the end of the mandate two weeks before it was to happen. Although very happy to imagine being maskless, I find I have reservations about completely abandoning our facial protections. Is it really that I cannot trust two shots and two weeks? Or is it that I cannot trust that those who will walk around maskless on Saturday are vaccinated? As of today 50% of Massachusetts are fully vaccinated; 69% have had at least one dose. The percentages are higher in Newton. During the weeks between announcement and maskless days, it has been comforting to be in stores and garden centers and see everyone masked. A year of protecting myself, protecting Julia, has left its mark.
Setting: rain and 40 degrees.The house is dark.This is a day for the potato leek soup that is in the fridge and a book and a cozy chair and throw over legs.Maybe it is not a day for momentous accomplishments or even folding the wash.
Time: Monday morning.That time when online school work comes streaming in and students are supposed to get organized for the week. In this house, it is the time to wrangle Julia to help me organize her work. This morning, Julia has a check in with her case manager and a speech group.
Back story: Last week, I advocated for support from school to get school work done.Two weeks ago I advocated for her speech services to resume.The weekly plan came back this morning with no more help than last week.There is a speech group meeting this morning.
Character: Increasingly, Julia lives and talks in a fantasy of teen sex and anime violence.Lots of blood and boys obsessed with her.She talks to herself.More and more often.She resents being pulled into the reality of our lives (which, at least to me, is not so bad at all).
Plot: Julia is declaring independence today.She doesn’t want me to have anything to do with her schoolwork. Continue reading →
A friend commented yesterday that this time is like a wild roller coaster ride.
Obsessively, I watch the John Hopkins virus resource center through out the day. Today, the worldwide total confirmed cases will reach one million with 50,000 dead. I stare at the numbers.
I have written for a post every day. I draft and leave it for awhile as is my usual process. By the time I get back to the draft a few hours later, even a few minutes later, I am in a completely different head space. Mind and soul seem to have climbed another mountain or fallen down another well. And it does not seem possible to edit to reflect where I’ve been or where I’ve gotten to. Continue reading →