Author: Suzanne Buchko

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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home

Looking for home, again.

My housing history after I met David was: two apartments in Cambridge, two in Summerville, two dorm years in Bronxville, New York, five apartments in NYC including one in the East Village and one in Park Slope, a town house and a house in Bloomington, Indiana, two houses in Indianapolis, one house is Madison, Wisconsin and now, one flat in Newton, MA.  

I come from a family who generally planted themselves in one place and never moved—my parents lived in two houses in two north Jersey towns, David’s parents lived in one apartment and one house in the same Jersey town, my aunt moved to the second floor of her mother’s house when she married and stayed there until infirmity forced her to move to her children’s home late in life, my sister has lived in two homes in Jersey and one horse farm in Virginia.  Had there been an available horse farm in Jersey, I imagine her never moving from there ever.  And I imagine that Cheshire and Justin, who moved last year to a 300 year old house, are planted for a good long time, if not for the rest of their lives.

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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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nyc 1

It is April and Julia is on second spring break.  And we are in NYC.

First off, we’ve been here for 24 hours and Julia has said at least 5 times that she loves this place.  Okay, we did have supper last night at the Chinese noodle shop she had picked out on line and we did find two goth/Japanese/anime clothes shops today, but it is noisy, confusing, busy and scruffy.  All things that Julia usually doesn’t like.  She might be picking up on my own happy feelings—ah, to be in NYC again.  

One of my happy dreams when we moved to Boston was to be able to visit NYC for theater, museums and walking around often.  Then Covid.  This is our first trip here, although we did just pass through last June on our way to Maryland.

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steps

After our first bike ride of the season.

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. 

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loosening dragon chains

A few friends, knowing of my Ukrainian heritage, have asked me about the war.  One asked if I was writing about it and I stuttered my way to some answer. What can I say to possibly add to the conversation? I know what I read in the Times and hear on NPR. I hardly belong to that part of the world.

I watch.  My heart breaks. I am angry. I want the world to respond. I understand why it doesn’t. I have no answers. The fact that I have the privilege of sitting, of watching, of thinking, of even writing that I have no answers breaks my heart again.  

My job, to ready Julia for adulthood, is ever present.  She hears the news I listen to.  Sometimes she comments.  She wants to know about the war.  She is a black and white thinker.  She does not understand inference.

So, when she asks if the war is wrong and bad, I quickly say yes.  When she asks if Putin is bad, and when she asks this she remembers that Trump liked Putin, I say yes again. She is able to put together that they are both bad people and she would never vote for them.  Then she asks what will happen. 

And I say, I don’t know. 

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the deep end

The bus didn’t come for Julia yesterday and I drove her to school.  When I came back into the house, I breathed in the aromas of our morning—coffee, sweet tea, bananas and chocolate chip waffles with maple syrup. Could I delineate each flavor note?  Probably not but smelling one, I imagined all the others.  The aroma was that of our mornings.  And there was such a peace in that. Our home takes on that aroma most mornings, I suppose.  It is warm and welcoming.  It is a good home smell, the scent of security, from which to leave to begin a day. Such a relief.  It did not have to be like that.  Even now.  And I appreciate the work that I’ve done to make it so. It has been a long haul.

And yet, peace and security is so fragile.

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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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a happy ending

Snail slow and in ever decreasing increments, I come back to and move onto some completed changed old self.  Never walking into the same river twice, but stepping on the same stones, recognizing the direction of water flow. The books strewn around the house—some closed with bookmarks, some open, face down on the coffee table, on the desks, on the edge of the bed far from where I sleep—they were not there six month ago. I walked around the house this morning looking for the book that I’ve decided to start my mornings with. I almost cannot write, cannot think a single thought before I read the reading for today.

I am my own delicious throwback to days before Covid and quarantine and autism and moving and death and heart transplant and a wild child. Who was that me way back then? I have almost, but not completely, forgotten her.

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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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