Category: Educating Julia

contents of the brain

Ten days of prep; eleven days before we get on the plane.  Going back to Hanoi, Vietnam. Soon.

I’ve made a long list a few weeks ago—finding, buying, arranging for, packing, and some home tasks because I love coming home to a cleaner house than I usually live in. I always do this. Tasks that are too arduous and not at all important fall to the wayside, but a few non-essential tasks get done along with the travel tasks. The big one this time is going through clothes—Julia’s and mine—and culling what we do not use. I haven’t done this with Julia since we moved into this apartment. She was resistant, but she seems to be happier in the morning picking out what she will wear for the day. I parted with just a few old things and a few things that either don’t fit anymore or that I haven’t really liked for a few years but hated to get rid of because they were perfectly wearable. Someone else will benefit and enjoy—at least that is what I tell Julia.

I am on the part of the list that is starting to be about packing. I’ve decided to take very few clothes—4 days’ worth (except for underwear) to be exact—and to plan to buy there.  We did that anyway last time, so might as well travel with loose bags going.  Julia is on board, and it will be interesting to see if she can buy clothes there and wear them. It will be harder for her than for me. If it is too hard, we’ll just be washing those four changes every four days.

I am not taking jeans, which is a first for me.  I live in jeans and usually travel in them even when I don’t use them when I arrive somewhere, but Vietnam is in the 80’s and 90’s right now, and when we come back in June, we’ll be close to that here.  I keep saying all that to myself to convince myself to do as I’ve planned.  Funny, how compulsive or obsessive I can be! It does help me understand Julia just a bit when I dig down into my own muck. 

One of my plans for this trip was to find ways for Julia to be a bit away from Ed and me. I have been looking for a companion or somewhere like a day program setting where she might spend a few days or a day a week. Although pursuing this pretty strenuously, I may have completely failed.  I was very excited to connect with one center that seems to be centered on training young adults on the spectrum for work by running a café, bookstore, and media center (not sure of this last one). I was corresponding with someone who is or was a director, and he invited Julia to visit and possibly take part. Then, last week, I received an email from him that is confusing, so I don’t know if any of that will happen. Julia is excited about some independence, and I still hold out hope I can find something.

My task list divided into daily tasks was created by AI.  ChatGPT, to be exact. I’ve been playing around with AI and was feeling overwhelmed when I needed to make the list. And AI did a decent job of a list. I’ve been modifying it as I go along. Today, with the big event of the day cancelled, I can do a few things on the list that I thought I would abandon—some gardening and clean-up of a file drawer—as well as reconnoitering the contents of the green toiletries bag that usually has everything from bandaids to nail clippers to antibiotic ointment. My pharmacy in a bag. Ed always says that I can get all of it there, which is true. Absolutely. But when someone needs to get rid of a headache, it is so nice to have it instantly instead of finding a pharmacy and trying to explain my needs to someone with limited English, and me with less than limited Vietnamese. 

And the cancelling of the day’s event, a brunch, also gives me the breathing room to sit down and write. Something that I have been neglecting. I started and did not complete a post about my quick trip to Virginia to my brother-in-law’s funeral. I will finish and post, not today.

There you have it, the contents of my brain this morning.

(I seem to have lost the “continue reading” sign, so for now, this will be all on the front page. Damn!)

Posted on by Suzanne Buchko 1

on one hand, the other hand, and something else

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. 

Continue reading →

Posted on by Suzanne Buchko 0

vermont 2

It is Indigenous Peoples Day. We are in Vermont, ready to leave today to return home. Julia’s day center is closed today. It will rain for most of today and tomorrow. I hope to stop to do some food shopping on our way home and make butternut squash soup for tonight’s dinner.

There the scene is set. 

It disturbs me greatly that trump proclaimed today a celebration of “the original American hero, a giant of Western civilization, and one of the most gallant and visionary men to ever walk the face of the earth.” It goes on to say that “[u]pon his arrival, he planted a majestic cross in a mighty act of devotion, dedicating the land to God and setting in motion America’s proud birthright of faith.”

Why does he—or they because that man cannot speak a single coherent sentence. There are way too many grammatically correct sentences and way too much warped “history” to believe that trump had anything to do with the drafting of his proclamation.— but why does he need to lie ALL of the time?

Continue reading →

Posted on by Suzanne Buchko 0

anime boston

We’ve been at the Hynes Convention Center at the anime convention for almost three hours and it is finally worth it. The registration process was not friendly—multiple lines, down long hallways. It took a long time to get a print out of the schedule for the day. They say we should be using an app, but I cannot download the app, I wanted Julia to have a paper schedule to choose from, and after being turned down by a few “officials”, I ask at the accessibility desk and insist.  Finally, someone admits that this is the first year they are not providing paper schedules.  I insist again, like the mother bear that I am, and a paper schedule is put in our hands but by that time, I am pissed off and grumbling and deliver a lecture on what accessibility means.  I’m not going to say it was not needed but I could have been nicer about it.  Not a proud moment.

But now . . . 

Julia is learning a dance in a k-pop dance workshop.  In a ballroom with at least 75 (maybe 100) other young men and women, mostly women. Two women teach on a slightly raised stage. They are clear and good at breaking the dance down into manageable chunks and repeating.  The actual singing group, Bebe performing Stay C, is projected on a large screen beside the two teachers. The dance is repeated at 50% and 75% of the speed of the song over and over. The dancers learn small chunks and dance. Every few learned chunks, the teachers review by going over everything that has been learned.   

Continue reading →

Posted on by Suzanne Buchko 0

another mother’s day

I brought my laptop to Julia’s year end recital at Berklee. Berklee Institute for Accessible Arts Education.  I will not get much time to sit and type but I was pretty sure I would want to get it out as soon as I sat down. I do and we have some time until recitals begin. 

This year the musical step taken is that Julia will play her cello without me sitting with her. This is the step forward after a few taken back. Back in Madison, when Julia was playing with Martha Vallon, she always played without someone sitting with her; however, when Julia emerged from Covid shutdown, she was not willing to be on the stage alone, not willing to do her own counting or take full responsibility for what she was playing.  I see some change now.  It has been a long way back.

Continue reading →

Posted on by Suzanne Buchko 0

truth and grace

I’ve been composing something in my head—about how Julia new placemet is going and how home is going and generally, although somewhat anxious about the world around us, I am feeling optimistic.  I thought that it might be the entry which would kick off the end of the  memoir that I’ve been working on off-and-on, although for the last few months it has been mostly off.

I hadn’t written this optimistic mostly-happily-ever-after post because I’ve been busy.  Feeling better means catching up and keeping up.  Tuesday night, I congratulated myself on getting my tax stuff together to give to the accountant.  Slowly, I’ve been feeling rather good and almost organized enough to do for myself.  

But you know, the shoes always drop. I’ve been waiting for them.

Monday night, Julia had an extremely runny nose. She had been coughing some a few days before. I gave her some decongestant Monday evening and she went to bed early. When I woke her up Tuesday morning, she didn’t want to get up.  A different kind of not wanting to wake up than usual. And so, I told her to go back to sleep and I called her van ride and her program. John, the program director, said she seemed off on Monday and asked if anything was wrong. He said she asked for quiet space. When I asked her about it later, she said she was not feeling that well on Monday.

She slept all of Tuesday, waking only when I asked about food.  She ate a late breakfast and an early supper, and after each she went back to bed and sleep.  When she woke up Wednesday morning, she seemed well and in a good mood. She got ready and got on the van without any difficulty.

Continue reading →

Posted on by Suzanne Buchko 0

hope is a thing with feathers

Thursday morning somewhere around 10 am, I was at the Discovery Museum with Cheshire and the boys when Cheshire received a phone call from The Price Center.  The director of Julia’s program was looking for me. Cheshire handed her phone to me, I verified that he had the wrong phone number for me—one digit off—and then we got down to the content of the call.  

I braced myself. Out of habit. In my experience, calls from directors are rarely good news. Some behavior, some serious concern, or in the worst situation: “You need to come pick your daughter up immediately.” When Julia was in school, there might be an occasional call about not-so-bad news, but generally and since kindergarten, calls from the institution are not good news. 

Thursday was different.

Continue reading →

Posted on by Suzanne Buchko 1

just a few thoughts and words

Once again, to begin again, to begin again and to wonder if it is possible to begin again, and to wonder what is possible in the long run other than the daily round.

I feel like I have been very far away.  Every so often during the last weeks, I’ve had the slight impulse to write something, a slight burst of energy. But all energy has been spent doing work for my UU church’s annual pledge drive (“APD”).  I am on the pledge drive team, such an unlikely position for me to take up. It is far out of my comfort level and the changes that have been made to the drive this year have pulled the work only further beyond my ken. However, I’ve had the chance to work on a few parties and thank goodness, parties are in my bailiwick. Two parties in two nights last weekend, and I admit I was quite flattened by exhaustion. The APD has one more big blow out of a party this weekend, and then the work shifts in nature.  There is at least another month to it but no more entertaining.  

And so, I start this way, writing about the pledge drive and the parties because it is where I can start.  At the moment, I am far from she who writes every day and sometimes comes up with something thoughtful.  I haven’t looked at the memoir in months and have only been working on a few thousand words of the novel at a month. I have not been keeping written tabs on daily life or Julia’s doings.  

Continue reading →

Posted on by Suzanne Buchko 0

consequences

New Year’s Eve has always been a veguely uncomfortable holiday for me. I’ve never been to Times Square to watch the ball fall, I don’t favor loud parties, rarely have I gone out for diner and dancing. We never built any traditions for the evening which didn’t bother me at all until I was alone.

I think I was happiest when I was working in restaurants or when David and I (and one or the other of the girls) went to movies and maybe somewhat of a quick dinner out. The turning of the century was a good NYE—a bunch of friends gathered at David’s father’s house in Jersey. We were living in Indy then and we still had NYC friends, some with small children. We cooked a nice dinner—I don’t remember what. Wine and maybe champagne. We sat in the kind of dining room that I knew growing up and ate on Dad’s good china, lifting his best wine glasses. One friend didn’t accompany his family because he was a computer guy and needed to guard his hard and soft ware if the worst case of Y2K predictions came to pass. Another friend announced that she was adopting a baby from Vietnam—the baby who now has one year old twins of her own. 

Continue reading →

Posted on by Suzanne Buchko 2

mood and transformation

Julia is not in a good mood today.  

I woke up late today, sleeping through the alarm that I never, ever sleep through. The clock suddenly said 8:36, and the social worker, who visits us every other month as part of a Medicaid program, was due at 8:45. I jumped out of bed, pulling on my jeans as I not-so-quietly urged Julia to get up and dressed. Julia hates rushing. No, she doesn’t hate rushing, she doesn’t rush. She complains that I am rushing her which I need to do often to get her on The Ride, or to my choir rehearsal, or to a dozen other things when ‘on-time’ is relevant. If only I could bestow an understanding of time on her—on time, late, soon, rush, hurry, scheduled, delayed, tardy. Oh, so many words! 

This time deficite is absolutely nothing new. We’ve been struggling with time for almost as long as I’ve known Julia. Possibly the toughest part of the challenge is my desire/need/obsession with being on-time. 

Continue reading →

Posted on by Suzanne Buchko 0