Tag: autism

bumps in the road

I can’t work this into a chatty post. I can’t make light of it. No pictures can tell the story. I have believed firmly that traveling with Julia was incredibly beneficial. Of course, we have not done any since moving to Boston, but this was going to be doing something we loved together again. And possibly better because Ed was with us.

We’ve hit some bumps, some limits and a bunch of my assumptions have been dashed.  We had a very hard 24+ hours over the last day and a half.  Julia was angry and lashed out at us.  She had melt downs in public and was very difficult to handle. She cursed and swore and talked under her breath until she was raging. She could not be brought down to a calm and rational state.  She didn’t want to be.

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jeremy bearimy

Julia over the weekend at dinner waiting for a movie.

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.

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winter profile (an update)

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.

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willy-nilly

Why do we do jigsaw puzzles?

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.  

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onions

We love to use the shopping bags we’ve acquired from friends. This one is from cousin Stef in Sydney. We are thinking of all our Ausie cousins who are, for the moment, on lock down. Sending love to all of you!

Home and with not much to do for this weekend.  We expect a storm tomorrow and the governor advised all to stay home tomorrow.  I am still not used to hurricanes, their warnings and their fierce rains even though I grew up with them.  The first one I remember was Hurricane Donna in 1960.  I remember weather men breaking into my favorite tv shows  and my parents shushing us to listen.  And I remember picking up tree branches after it was all over. I remember tv news and pictures of places where homes and businesses were destroyed, and some cars floating down flooded streets.  I think it may have been when I realized that humans, particularly my parents, didn’t control everything.

Julia asked if she could take some time to draw this morning, and she is still at it 2 hours later.  This is the third day in a row that she has asked for the time. Cautiously, I wonder if going back to therapies that we’ve used before is giving her something.

Back a few months, I wondered out loud to our family therapist what kinds of therapies and interventions were appropriate, helpful and useful to Julia now.  Therapies and exercises always call for me to organize and facilitate.  When I wondered out loud, I felt tired and feeling like nothing that I had done for the past two years had done much good.   When I told her last week about things I was bringing back and things I was exploring, she reminded me that I had asked the question and evidently had come to an answer.  

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the best laid schemes . . .

I had plans today.  And we all know what happens to plans.  And sometimes it is more than hard to figure out just which clause of the Serenity Prayer should be in play right now. Or as Cheshire says, “2020 laughs at your plans.”

I predicted that we would not get to an outcome for the presidential election last night or this morning; however, I find that a definitive landslide for the Democrats was a wish lodged deep in my heart.  

I fell asleep listening to election returns in bed on my laptop just before midnight and woke up a few hours later in time to hear the NPR host talking about trump’s victory speech.  I groaned, closed the laptop, turned over and went back to sleep.  I had at least two unnerving dreams during which friends who I haven’t seen in a very long time appeared.  I hugged them hard.

Gosh, I needed that.

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roots, wings, officers & self-pity

237D0ECB-BCFD-4BAE-8FF4-AEAD4D5CFD26The wedding and the week at the lake house were wonderful but not without snags and challenges—challenges that have continued into the new week.

On Friday afternoon at the lake, Julia had a melt down.  It was not about anything in particular and it was not the worst she has had but it hurt me pretty deeply.  We had spent the week with Cheshire’s new in-laws and they were lovely to us, to Julia.  We’ve been with them for holidays and the long weekend over the Fourth of July.  Their interest in Julia and kindness towards her cannot be faulted. Even their children are kind and loving. It was precisely for those reasons that Julia’s behavior hit me so hard.  She was making the situatin difficult and uncomfortable.  All I could see at that point was that I had brought a very difficult family to the table. Quickly my hurt devolved into self-pity. Everyone else was coupled, I was alone.  I could not even deliver Cheshire’s father to the wedding. Okay, that was not my fault. At least, I knew that rationally, but rationality had no place in that dark space.  My aloneness and loneliness, that I fought against all week, reared its ugly head. I saw myself as a taker and my move to Boston as a mistake. If I was far away, Cheshire could, for the most part, engage with her husband’s extended family without the challenges that Julia brings to every event. Of course, when I voiced some of this to Cheshire, she disabused me of the ideas.  Continue reading →

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connection

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My orchid blooms! Gifted by Amy four years ago, carried from Madison last July.

Yesterday, Julia had two online class meeting and unfortunately we missed a third one. They were all set up the day before and if a student hadn’t checked where teachers usually post assignment, the student missed meetings.  These pre-class meet ups feel random but we in pre-schedule days.  It feels chaotic, hit or miss.  I want the schedule, the instruction book, some thing sure.  We are riding the waves like surfers and I happened to want to walk the well trod path.  Possibly paved.

At the beginning of the week, I cleared my google calendar. Julia glanced over at my computer and was appalled at what I was doing-wiping away school dismissal times, my HILR classes, her cello lessons, spring break travel plans, the school musical, etc. We needed a calming talk to ease her mind.  Then, I added new appointments, mostly on zoom, and there is no pattern. Not yet. Almost immediately there were conflicts—why does everyone, meaning 3 groups, want to schedule meetings at 1 p.m. on Thursdays? I need the calm talk right now.  We will miss appointments/classes/meetings.  And with gentle pushes forward and some long steady breaths, it will work out. Continue reading →

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holiday weekend

F6C80BE0-6315-489F-B71E-2E4688C738C0Old December holiday styled header today.  Not this year’s at all; however, for how challenging the last few days have been, I want to claim December and celebrate cozy holidays.

Today, we put up and decorated our little fake tree.  Bought during a year that we were going to spend a long Christmas holiday with Cheshire and Julia still wanted a tree.  Since then, Julia has asked to put it up as soon as Thanksgiving is over and I could see no reason to say no.  It was on the schedule for Sunday, today is Wednesday, but the little tree is up.  As are a few decorations and a string of lights around the mantle.   Continue reading →

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the pace of change

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Not at all what the house looks like today, but my favorite picture of my home.

House on sale today.  The listing.

The House: Staged.  Stripped of it finery.  My finery.  Even the periwinkle walls of my bedroom are bleached white.  Adorned with ersatz tchotchkes and fake ferns.  Upstairs hall echos when I call up to Julia in the morning.  The ethos of the house is a disturbing dream of a home I have abandoned but not left.  Dali or Esher-like?

Me: tired, grumpy, stressed. Discovering how home is rooted in the art on my walls and the books on their shelves. Terrified that the pace of change is picking up. Yes, I know, I pushed that stone down the hill. Continue reading →

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