Tag: Julia

waiting & not waiting

Waiting.  Big snow storm predicted for the day. Over the past two days, the outlook changed from hour to hour.  I think it was supposed to begin overnight and that got edged up and up until I decided that we could do Julia’s volunteer time at the library.  It is raining and it is chilly, but not cold enough for serious snow.  A few flakes were falling during our ride to the library but if I wasn’t expecting snow, I might not have identified what fell as snow flakes.

And things were cancelled yesterday—many school districts, Julia’s day program, CRI rowing tonight.

Even my phone said it was snowing this morning long before there was anything but rain coming down.  

And waiting to see if my persistent cough is a flu.  I’ve been coughing—sometimes more, sometimes less—for months now.  Covid recovery, dry buildings, maybe a cold.  Just on and on.  However, today I woke up with more—heavy eyes, feeling like it was a bad night’s sleep even though it really wasn’t, maybe a bit warm, and now sitting in the library, my skin is beginning to hurt and all I want to do it go to bed.

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Posted on by Suzanne Buchko 0

a big ask

I am reaching out, looking for some help. Some of you may know that I have not been able to find appropriate day programming for Julia.  

Julia turned 22 in January, and she was finished with school related programming. She was not ready for employment or further education. I hoped find an appropriate day program for her, specifically a Community-Based Day Support (CBDS) which develops and fosters core skills and vocational attributes necessary for social and vocational independence.  However, ever since the Covid lockdown, it has been very difficult to find a place in a CBDS. Most programs citing the difficulty in finding staff. 

At present, Julia attends programming that does not meet her needs and is not helping her to foster core skills or vocational attributes.  I have been working for the past 18 months to find her an appropriate program but as this year ends, I don’t see that she is any closer to good programming than she was when she left school in January.

Julia is eligible for services through the Department of Developmental Services (DDS), and I’ve turned to their Participant Directed Program (PDP) to meet some of her needs.  Julia has been funded for three days of support through PDP; however, while the PDP offers flexibility, creativity and opportunity to individualize supports for an individual, it also expect that the family will identify, hire and train the support staff.

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Posted on by Suzanne Buchko 2

the ride

This morning, Julia is taking The Ride, Massachusetts’ para-transit service for people who can’t use public transportation or drive due to disability.  She is going from home to Elliot House and back again. She needs to be met on both ends right now.  It is a restriction that can be lifted in the Spring if she does well.  

And this gives me an extra two hours in my day, plus no energy drain from the driving.  I did not realize that there was an energy drain until we came back from traveling.  I had not been responsible for driving for 6 weeks and I felt the difference almost immediately upon taking it up again.

This morning, Julia just left, and I feel the quiet and peace settle over this house like it never has.  Like the old feeling when she was in school and the bus came to get her or she went to catch the bus. I feel rich beyond measure. This is a moving on from the 11 months since she has been without programming.  The Ride doesn’t give her programming, but in a sense, it gives her just a taste of her old school life when she had direction and support.  I didn’t know that she would feel this way about a para bus picking her up but this morning, after 3 rides this week, it clearly does. For the first time in 11 months, I feel like the services cliff that she fell off in January is becoming a ramp.

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Posted on by Suzanne Buchko 2

auntie duties

Julia has not wanted to have much contact with Wilbur since his first few days. Cheshire and I have been patient and have just waited it out. I’ve spent a good deal of my time with Wilbur during the day when Julia has been at her program. When she has spoken negatively about Wilbur, I’ve been firm that he is a permanent member of our family and that I intended to be a good grandma. I’ve offered that she can stay home when we are able to visit together. She has never taken me up on that. For himself, Wilbur is fascinated by the auntie who doesn’t pay him much attention.

On Thursday, Julia and I met Cheshire and Wilbur at the Discovery Museum. In the baby space, Wilbur was making use of practice stairs, plastic animals, and lots of balls, and Julia became interested. I am so happy to see her and Wilbur together. I do believe that they could be good friends.

Posted on by Suzanne Buchko 1

taking up the . . .

Taking up the . . . Like in “the slack.” 

The direct opposite of what I scribbled one day in November 2014.

Rarely do I wake up before Julia these days and get to plunge immediately onto the page.  Into the page?  Okay, so I washed my face, brushed my teeth, made a latte with three shots of espresso—the third a treat for the day—made the bed and then opened the laptop.

The morning light streams into the living room making it almost difficult to type.  I haven’t lived in this house in the autumn but I am almost sure that this is what autumn light will be like.  The angle of summer light coming into the living room has shifted. This new light is gentler, smoother than what has shined in since late May.

Everywhere.  Everywhere all around me, the season is changing.  A few days ago on a walk, Julia and I spotted some brown leaves on the ground.  Very early victims of the transformation or just unfortunate late summer victims of overwatering?  No matter they are the harbinger of change.

Facebook posts aplenty of children being driven to move-in days at their colleges and parents feeling the first sting of empty nesting.  Oh my friends, you will endure and prosper very soon.  Younger families posting pictures of first days of many, many grades. Smiling faces, new sneakers, expectation galore. And hope.

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Posted on by Suzanne Buchko 0

slivers of light

After a lot of dark days, a few lights appear.

First, some sobering reality.  The day program visit of two weeks ago that did not go particularly well, resulted in a rejection due to impulsive behavior and Julia’s use of an hour of the behavioral specialist’s time.  The rejection did not surprise me but it did scare me and I went into full catastrophizing mode.  What if this is every interview, every day spent visiting a new programs? 

The woman from a third program who visited Julia at Elliot House a few days before the unsuccessful visit to the second program was slightly more encouraging.  She could see why Elliot House was not right for Julia, pointing out that she did not see any sign of relationship building going on, something that Julia thrived on in the past.  For Julia, that is right on, (for a more independent and self-motivated person, Elliot House would be a very different experience). She told me that comparing Julia at Elliot House with how Julia might be at her program was an apples-to-oranges comparison, impossible for her to make. The woman offered a tour of her program for Julia and I and possibly a day visit to the program for Julia a few days after the tour.  I asked to do both when Julia finished her month at the arts camp she is attending hoping that some of the luster of the full internet days at Elliot House will be worn off.  Fingers and toes crossed.

It has occurred to me that for all the lip service by professionals acknowledging the regression and set backs that have happened since the covid shut downs and lack of programming, allowance for the behaviors stemming from those regressions is lacking.  Running through my brain is the idea that Julia from 2019 would have been more able to visit programs.  Anyway, I think that is so.  My hope is that I get a return of Julia’s 2019 sense of herself, but I can’t make that happen alone.  I need a program that will support her and foster the re-growth.  At the same time, that special program has to be willing to live through Julia’s transition to the program.  So far, I am not coming up with a program willing to do that.

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Posted on by Suzanne Buchko 2

small things

Today is a day of doing small things for any number of reasons.  Julia’s continuing bad mood limits activity.  There is a building up of small tasks that have accumulated and feels like a much larger burden.  I am expecting dinner guests, my neighbor from upstairs, tonight and I have light duty as to the cooking.  And so, small things—gym this morning which was good for exercise and whose aim was to mitigate the foul mood that a Julia woke up with.  It didn’t work.  Cleaning up and pruning the window boxes on the back porch and washing the porch with the hose. Making cookies to go with a fruit dessert that I usually just make during the holidays for tonight.  Hanging pictures in the hall that have been on the floor for two weeks. Writing a few email, begging for help with Julia’s services.  And now, sitting down to write just a little bit.

I have had trouble sitting down to write.  Not finding the time when I am at my best and wanting only to veg out when I am tired or feeling overwhelmed.  And that is most days.

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Posted on by Suzanne Buchko 0

this is my brave

Last winter, I was part of Flourishing Families, a 6-week program supporting caregivers of young adults who live with mental health and/or substance use conditions to heal and build sustainable, health-promoting relationships. The program is part of Boston University’s Center for Psychiatric Rehabilitation. In March, our BU facilitator announced that This is My Brave would produce a storytelling night based on stories from Flourishing Families. I submitted a story and spent a bit more than a month rehearsing via Zoom with seven other storytellers.  We met in person the afternoon of May 23, and that evening we told our stories. It was wonderful to tell and listen, and most of all, it was an honor, a blessing and so cool to meet and spend time with these marvelous women plus our BU facilitator and our My Brave producer. 

The full show can be found on YouTube at: 

Posted on by Suzanne Buchko 0

expertise

I wrote this piece for the memoir class I am taking. It is the last of five garden related pieces. I is also where we are today, where I am. And so, I’m putting it here.

Julia’s new, shorter hair cut. So very happy she finally agreed to it.

I am a gardener.

I notice what goes on in gardens: flowers and vegetables and herbs, perennials, biennials and abundantly blooming annuals that don’t stop until the first frost.  I notice trees and bushes, decorative, productive and the volunteers that can be the bane in a gardener’s vision.  I notice what the bunnies are eating, what cannot survive without six hours of sun, what the weeds are choking out and what thrives in a microclimate close to a dryer vent on the north side of a house.  I know which tulips were planted as bulbs last autumn and which were planted full grown two weeks ago along a walkway with a carefully planned casualness. I admire the window boxes on Beacon Hill—lush, overfull and overflowing, miniature landscapes in harmonies of pinks and creams and lavenders punctuated with trailing greens.

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Posted on by Suzanne Buchko 0

an equinox

Two weeks old

I went up to Cheshire and Justin’s house on Wednesday with the promise of holding Wilbur for an hour or two.  Two weeks old and not spending too much time with eyes open.  He had a doctor’s appointment earlier in the day and it tired him out.  He nestled in my arms, moving his extremities the way a new baby does—random and without purpose.  Amazing how dear such movements can be.  And I cannot help but remember when his mother was that age and we brought her home to First Avenue in the East Village.

All is well at Wilbur’s house.  Baby sleeping in adequate chunks of time; his bodily functions all working at full tilt.  When else is farting charming? He has a good suck, fills his diaper regularly and cries in protest every time his little body is without clothes. Mama and Papa are content, and not as exhausted as I remember being.

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Posted on by Suzanne Buchko 1