tulips and small steps`

Dramatic Julia at the Brooklyn Botanical Gardens Japanese Garden

I meant to write yesterday.  What happened?

10:00 a.am.  I get a email from Julia’s inclusion facilitator that Julia is upset that she left her wallet at home.  I am more or less ready to do some errands, so I jump in the car and bring the wallet over to the program.  I want Julia to have as good a day as she can. She has had some very good days this week . . . talk about that later.  

First.

I read a blog post (and I can’t find it now to link it) about a mom who has a child with autism who had reached middle or high school and was more independent than he had been a few years prior.  The mother felt some room open up, some possibility of freedom for herself, and asked a trusted therapist if she thought that the mom could enter the regular work force again.  She had cobbled together part-time work through the years but missed a full-time job and building a career.  The therapist, who knew her kiddo, told the mom that if she “needed” to work, she should, but that kids with the best outcomes have full-time moms.  

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nyc 2

Day 3, if you are counting Monday evening.

We are in a diner on E. Houston.  Julia eating eggs and sausage and I with a bowl of oatmeal.  Why is oatmeal always, at least in my experience, better than it is at home.  When I visited Chicago often, I had a favorite breakfast spot, a chain, that had the best oatmeal.  What I am having this morning is pretty close.  I have opined in the past that it is because they make a very large batch in an old thin metal pot.  Commercially oatmeal is made with water and they skimp some on the oats.  Or not.  It is delicious.

As we eat, a young couple come in with a little girl, I’d say about 18 months old.  They are all taller and better looking than we were, except for the little girl, and it is the woman not the man who wears glasses.  They remind me of David and Cheshire and I when she was about that young.  The little girl walks around as they wait for their breakfast.  Dad follows her.  The wait staff greet the Dad and girl.  We are close to our old neighborhood. We too had a breakfast spot that we frequented—Kiev, which closed a long time ago—and the wait staff—mostly middle aged Ukrainian ladies—entertained Cheshire.  

This is a journey of remembering.  Not surprising—I have not stayed in Manhattan often since we left when Cheshire was 3.5, and Julia and I have not been to NYC since we moved.  This kind of memory walk was a challenge to me years ago—our travels in Italy when there seemed to be a memory and a pain around every corner. Now, there are just memories, and taking back the city a street and restaurant at a time will smooth the wrinkles of that very old life.  

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late winter break

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.  

Big however!

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unlaid plans

“[W]henever well-laid plans are unlaid in an instant . . .”

Melissa Kirsch wrote in the NYTimes two days ago in How We’re Holding It Together: “These lines keep coming back to me — when a long-anticipated trip is shelved indefinitely, when my family decides to postpone gathering for the holidays — whenever well-laid plans are unlaid in an instant”

By the time I read her lines, our holiday plans had already been upended.  Julia and I went up to Conway, New Hampshire, as planned, to spend time in the enchanting land of snow with the good company of Justin’s family; however, absent from the gathering were Cheshire and Justin due to positive Covid tests.

Justin who has worked from home for years (and not just since the 2020 shut down), travelled for work for the first time in two years two weeks ago and came home with a bad cold.  A take home Covid test the day before we were all to leave for NH was positive and Cheshire followed two days later but only after a P.C.R. test, her rapid test was negative.  

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maine

I keep my journaling in files month-by-month.  It is not as satisfying as the various soft covered writing books that I wrote in and then lined up on book shelves but far more practical and convenient.  I still carry a small paper journal but it is for quick jottings that, if I am still interested in hours later, I transcribe to this screen.  Where I was once meticulous to finish each journal before moving on to a new one, I am likewise meticulous about keep each month’s scribblings in its own computer file.  And so, it is odd for me to still be writing in the August 2021 file on September 3.  I know the intent yesterday was consolidate what I had written during our days in Maine and to publish something with the Maine photos, but I could not concentrate on a vacation summary.  Descriptions of charming towns and water and sky slipping away into explanations, systems of ideas explaining our present reality.  Trying to make sense of my own present “where.”

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china sisters

Traveling again!

It  is telling that after two years I only noticed on Friday morning at 4:30 a.m. that my street has no street lights.  We are catching a 6 a.m. plane Boston to Philly and then a later plane to Dayton, Ohio.  It was China Sisters Reunion weekend.  A Facebook post announced that this is the 16th reunion if our trip to China is included.

Ah, a trip to China.  I am still marveling that Julia and I have not gotten on a plane for more than 2 years.  How is that so?  

And yet, we were picked up and dropped off at Logan and entered into the swarm of early morning travelers.  The check in lines and kiosks buzzed with people.  People everywhere!  Carrying and pulling, asking questions and commenting excitedly, making people noises that made something of a soundtrack as we made our way to the departure gate.  I remember but I am hearing it all for the first time.  Like riding a bicycle, we quickly adapted to the old routines—printing boarding passes, finding security, getting into the TSA line, showing identification and pulling down each of our masks for a moment to make sure that the picture on the ID matched the person carrying the ticket.  Julia asked if she had to take off her shoes and we both forgot to take our phones out of jacket pockets. 

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traveling

Lily Pond at Longwood Gardens

We are home and . . . .

We left on Friday, early in the day.  There was the threat of rain but there was also Longwood Gardens, one of my favorite places in the entire world, a bit more than an hour north.  On the way home.  Almost.  It never rained but it was cloudy and clammy.  Julia complained, but I was not to be dissuaded from indulging in the garden.  We did some walking, less than I would have liked, more than Julia wanted.  Compromise!  Beds of color do not impress her, but the water fountain with musical accompaniment was pretty thrilling.  Best of all was when I found the plant that is her favorite.  I almost didn’t find it.  It was in the very last exhibit, behind the green house, in a corner of the water lily ponds.  Mimosa pudica, also called the sensitive plant.  The tiny ground hugging plant with leaves that fold at the slightest touch is of never ending fascination to Julia.  And she was thrilled we found it.

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soloing

DSC_9073West High School Choir concert last night.  Julia had a solo in the Freshman Choir’s rendition of Sia’s Rainbow.

There is backstory.

Julia has choir class every day.  We, the indomitable Anthony Cao and I, worked very intentionally helping Julia with appropriate choir behavior, that is, standing still, watching him and singing, not talking.  Julia and I have done a standing meditation since November to find out what her body does when it is still and lots of reminders (and lots of praise) for the other points.   Continue reading

might as well be dancin’

C31B34D9-4BAA-46A5-A5EC-1A41F0981A6DRinging in a new year in what might be considered the most classic, but for me the least characteristic way—on a crowded dance floor gyrating with a throng of strangers in party hats and noise makers to a band playing the ancient music covered by high school bands in the late 60’s (no complaints about the music. It was very delightful).  Before the parties heated up, Cheshire and I walked around an upper deck in the cool night air.  A few stars were out, we could watch the quiet dark sea and the wake made by our boat. It was my favorite part of the evening, perhaps of the cruise.  Minutes before midnight, we joined the throng dancing.  Twenty seconds before midnight we began counting down as if this was a novel experience. At midnight, music played, people cheered, hugged and kissed, balloons, streamers and confetti fell from 10 floors above. In a minute, we we stood knee deep in balloons and streamers. It was almost strangely satisfying. It was as I had always imagined. Continue reading

cruise day 3 – a day at sea

We embarked on Thursday. Our hotel was less than 1.5 miles from the dock and so we arrived by foot, each of us with back pack and pulling our carry on bag. Once again, Autism on the Seas met us at the first check in point and moved us through lines and crowds. There is something wonderfully familiar and comfortable about this cruise. The ship is not configured in the same way but most of the same elements are there, the mental maps are so much easier.  Julia and I were at ease much sooner and we were able to clue Cheshire in.

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It is great having Cheshire with us. A second person to interact with and boss Julia around, a lovely companion for me to enjoy. Last cruise, julia and I had a wheel chair accessible cabin. We booked late and some of those rooms had been released. Our cabin this time is standard and a lot narrower. We have a window and not a balcony. I miss the ability to be outside immediately and the balcony provides a few extra feet but we manage the tight space well.  I do find myself constantly straightening and putting away out stuff. Clutter happens fast.

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