make it so

A blue ribbon and a fourth place ribbon during the sectional track meet. Julia was extremely proud of herself!

We had Julia’s last IEP meeting yesterday.  She will leave the school system in January when she turns 22. The participants included transition specialists from DDS and MRC, both agencies will loom large in Julia’s future.  Her inclusion facilitator conducted the meeting.  Two aides, the speech therapist, Julia’s out of school therapist were also there.  

Julia presented a power point about where she is and where she wants to go.  She has done this for a few years and this one was the best.  She likes working at the library, she wants to work more, she wants to live with room mates, she wants to take care of her nephew who is not yet born. She has gotten better at cooking and she is interested in making money.  I am leaving a few things out that I’ve forgotten.  Each slide was pretty appropriately illustrated with anime pictures that she copied.

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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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performance + work

I cannot let the week end without noting Julia’s doings.

When bad things happen it is easy to dwell on them, to obsess, to perseverate, to take the moment of the undesired happening and stretch it thin to see all of the possible consequences.  I do all of that.  And, close to relentlessly, worry.  And I am quite the expert at that.

But when good things happen, I find I breathe them in and then let them flutter away.  Sometimes I don’t even note them. Sometimes I note them, even write about them and then quickly forget them.  I expect that this is a common phenomenon that needs changing.  At least, in my life.

Julia had her first recital with her Berklee cello teacher on Sunday.  She played Minute No. 3 by JS Bach, the fourth piece in the Suzuki 2 book. The first half is in first position; after the repeat, the second half switches from first to second positions.  This piece has been a challenge for her.  She has gotten through it with repeats close to perfectly, but not consistently.  Sometimes the second position trips her up, sometimes the bowing.  Added to this, she played it as a duet with another student on the piano.  They practiced on two Saturdays during her lesson.  Last Saturday during lesson, I sat with Julia as she played, and Miles, the teacher, sat with the piano player. To say it was a work in progress was quite generous.

Still, this piece represents an incredible effort on her part.

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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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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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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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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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