Reading this over, I feel like I am regularly reporting on a pendulum—steps forward and then back again. And admittedly, I desperately want to report on a simple, ordinary upward progress without a hint of directional change.
Yesterday was not a good day for Julia. What concerns me most is her moods and their resultant behaviors are neither reliable nor dependable. And they are also not predictable.
As I’ve written, we’ve had a few decent weeks with Julia. To add to the tidy pile of good—on Wednesday, another student bumped into her and her reaction was extraordinarily appropriate. The behavior of the other student may have been intentional but definitely not personal. Julia, who can make a very big deal about any casual physical contact, had no negative reaction. Staff sent her to the nurse in case something hurt and she was fine. She reported it to me in a very casual way—completely appropriate for the magnitude of the experiene. That felt good.
The pace of life is picking up and has been for a while although I admit to becoming aware of it long after other people who are more of the busy world. I know many people who have already gone to far away places, stayed for a month and come back with healthy looking skin and bright eyes.
This coming Sunday, I am scheduled to teach pysanky writing at my church and a friend wanting to sign up noted that there are two others events going on—a zoom Moth Story hour and an in-person music rehearsal. Wasn’t it just last week when every gathering happened in front of a computer monitor? How glorious that there are now conflicts. How glorious that travel time is now part of many plans!
But I live a small life.
On Sunday, on our way into church—we arrive an hour before services begin to go to choir practice—Julia and I noticed perfect small yellow narcissus blooming in corners around the back of the building. Without a spring garden of my own, I notice and cherish those brave little yellow blooms. I know that even though the day may be warm and sunny, there are cold days ahead. Silently, I wish the brave blooms are sheltered enough to survive another freeze.
And I wondered, had I seen blooms in this place before? I might have just before we were locked down two years ago, but what I remember from that time is only the spring flowers we saw on our Covid daily walks. I think it is probable that these little narcissus bloomed in 2020 after no one was walking into the church building and last year it was the same. I think to thank them for their perseverance and persistence, their willingness to be so beautiful even when no one was looking.
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.
Julia and I began a new one on New Year’s Day although we hardly made any progress until this weekend. 1000 pieces that when finished will be a Venetian scene.
I love Venice and I hunger for traveling, so it is a bitter sweet endeavor. As I separate the lavender sky pieces from the butter colored Doge’s palace pieces, I wonder and wonder if I can begin to make summer plans. To Venice or London or, Julia’s desire, Japan. I know, the first two are cities and the third a country. Japan would take a lot more planning; I know nothing about Japan. Julia, however, has texted me the address of the park in Tokyo where cosplayers gather on weekends to show off their costumes. We will make that stop.
Last week, an acquaintance on the HILR email list, wrote that she was looking for ideas for a summer trip to northern Italy. I immediately responded, with a longer than expected description of Orta San Giulio, including restaurants, walks, the mysterious island in the middle of the Orta and the hydrangea in gardens in August. My enthusiasm leaking out of my fingers.
It has been an okay time—this week or two. Julia has settled into school. A few hard days now and again, a few challenges with the iPad and social media. Those challenges have been ongoing for more than a year and, even though I am so tired of them, I admit that they have calmed from gale force wind storms to the occasional drizzle. School is mostly left to school. I continue to be grateful that she is a high needs learner who is in the school building 5 days a week and that most of the school work is done either during the 90 minute class periods or support resource/support time. At home, she continues to draw every day, she practices her cello, we do almost weekly baking that is now packed up in individual bags and sent to school. Thank you’s to teachers and staff—right now, it feels like the only way to teach Julia gratitude. Julia does chores or what I call Family Work—still needing reminders but usually only once or twice on any given day. She is getting better about marking the allowance chart when she does qualifying activities and work. All these things—bringing baked stuff into school, family work, daily cello and drawing—are what she can learn during this time. She has academic classes in school but I don’t expect much from them. Not that teachers and staff are not working their butts off—they are— but I don’t know how much biology or art history are going to go into Julia brain this year. I do not see her as “available” for learning.
I keep notes and draft of this online journal in monthly files.At the top of the file, I have monthly plans, goals or aspirations.Sometimes “write more” or “daily sit” or “gym 3x week.” April’s “plans” say: remain curious, survive, grow compassion, nap.
Somewhat shameful admissions (Although I am hardly filled with shame for any of these) and other things:
-Some kind of candy is a part of every shopping list.This week, a bag of M&M’s. I don’t think I ever, in my own house, bought biweekly candy. I am eating some now. 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 →
Like dominos.Like those elaborate domino runs that are impossible to look away from. Got to watch them to the end.All week, I compulsively check NYTimes.com. COVID19 and the stock market.
Two weeks ago, a group of high school students from Newton returned from Italy and went into quarantine. There were two emails from the school about that and more emails about possibilities and procedures if necessary. On Sunday, there was an email about a Newton resident with a student in middle school who was diagnosed with a presumptive case of COVID-19. The child, without symptoms, was following the quarantine protocol.Continue reading →
Public Service Announcement: “Regularly used in text messages or online, the word/ letter /phrase /term, “K” really only means one thing: Fuck You. The use of a “K” should be reserved for very selective moments of frustration or annoyance, otherwise it sends the wrong impression.” Read more here.
Am I the last person in the cyber world to know this??Perhaps. I can definitely think of specific people who have used this with me.If they meant it in any other way but a casual “okay,” I was clueless. I think of myself as a relatively savvy-for-an-old-lady online participant—I do wonder where people get their gifs from and so quickly after I message them.My older daughter has promised to show me.But this, K stuff is perplexing.Who told who and when and why did they leave me out? Continue reading →
Last week, Julia’s inclusion facilitator (a post previously called “case manager” and hereafter IF) told me that Julia was not put on the bus list in error and if it was possible for me to drive her for the week, she would get the bus this second week of school.I agreed, jotting down the bus as a topic of conversation for our meeting this week.Sunday evening, the bus service called me to tell me when Julia would be picked up on Monday.This morning the bus was early and so tooted its horn for us.I went to the door and Julia was out a few minutes later.I talked to the driver who actually seemed to know the the time quoted to me was too late and that they were still making adjustments.She apologized that I did not get phone call before this morning about changes.I feel like I’m living in some utopian bizarro world!In Madison (I’m not going to repeat the bus saga, the sped bus never tooted its horns if Julia was not waiting for it.A bus pulled up to our house, waited a few minutes and then left.There were a few times when I complained the bus never showed up and the dispatcher said that the bus was there, waited and left.If the bus was early, especially in the early days of ninth grade, it could have escaped our notice.So, this little curtesy, a tooting of the horn seems like a miracle to me. Continue reading →