Category: Educating Julia

of all things changing

Happy Birthday, Julia!

We have spent this first half of January clearing out the old, sorting, parting with, bringing in some new, and a good deal of that went on in Julia’s bedroom.

To back up a bit, I have always loved making a big deal about Julia’s bedroom.  Before she came home, I made a pretty girly but not over-stimulating bedroom for her in our Indianapolis home. By the time we moved to Madison 9 months later, she was firmly established as a dinosaur connoisseur and so I designed, painted and decorated a room filled with colorful dinos. She wanted them colorful and wanted her dino toys all around. That was a busy and stimulating room that she really liked. When her taste changed to all things Harry Potter, we made a Gryffindor room—My favorite piece in it was a wand shelf right by her bed. When we moved to Massachusetts, she had almost left HP behind although we hung some of the pictures she was still attached to and we hung some anime posters she was leaning towards. We put up the book shelves she always had and stacked the bins of Littlest Pet Shop critters, Lego and dinosaurs because she wanted them near. Moving house last February, we got to pick out paint colors. Julia picked hers. She decided she didn’t want books in her room (which admittedly was not easy for me) and she was even ambivalent about the anime posters. So, the room, except for the pretty paint on the walls, has looked pretty generic and like she just moved in for the last year. Some stuff on the shelves—toys and art supplies—but lots of piles on the floor with stuff she couldn’t decide about keeping and didn’t know where to put.

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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

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

tasting failure

Very rough day. Somewhere around 10 a.m., I received this email from a program director:

“It was great to see you and meet[] Julia this week. Our team felt that what we provide and the environment could be over stimulating for Julia. We think a smaller size structure program will be a good fit for her. I did reached out to Nancy from DDS with feedback. I am sure you will be able to find a program for Julia.”

That last sentence — “sure you will be able to find a program” — really stung.

Julia and I visited the program, Delta Projects, on Tuesday. Julia’s behavior was not perfect but by the time that we left, she was in conversation with some of the staff and a few of the participants. I was hoping that Delta Projects was a possibility for her. The director’s email quashed that hope.

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Posted on by Suzanne Buchko 3

adulting

Friday.  Sheets of rain are falling outside my living room window.  Julia is in New Hampshire at sleep-away camp and I am so glad I packed some warm clothes, her rain jacket and a long poncho for her!

I has been lovely being a grown up for the week.  I’ve not really cooked a single meal—lots of breakfasts out and left over freezer stuff popped into the microwave.  I’ve eaten supper at 10 at night when I finished my work, and I’ve written long overdue emails although I’ve just gotten to a few today that I thought I’d write a few days ago.  

I’ve printed out about half the memoir pieces I’ve written and pinned them up on a wall in my study with the hope of finding some order for them.  Right now, the pieces are in rows but I am imagining changing that to be a winding path up the office wall.  Pretty appropriate considering my story—absolutely no straight lines! 

I’ve booked places to stay in Tokyo and the first week in Hanoi.  I need to get serious about making notes of places we can visit and restaurants we can go to. 

The rain, as quickly as it began, has abruptly stopped.  And for a moment there is a breeze.

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Posted on by Suzanne Buchko 1

bits

This weekend is FanExpo 2023 (formally known as Comicon). On Friday evening, Julia wore fetching a new Jedi uniform. We walked around the Expo taking in the sights, posing as part of the Jedi attendees and sitting in on a few panels. The last one about the Kawaii culture of Japan—a topic that may be useful in another few weeks.

We worked the Expo on Saturday. Last year, Julia was placed as a room monitor on a very slow floor. There were panels every hour but there were only 30-40 people who came to any one of them. It made for a pleasant 2 days of work that Julia could actually handle pretty well by Sunday. This year there are less panel rooms and we are on a busy hall of three panel rooms. We are two of six people working the rooms and sometimes it was too much for Julia. Still, she was willing and relatively focused. She gave some wrong directions when asked but I’m sure she is not the only one doing that.

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Posted on by Suzanne Buchko 2

post arts camp

Julia finished her month of arts camp. She still doesn’t have her phone and her internet use is limited. Sometimes her behavior is challenging but overall, she is returning to our real world. PYD, who ran the camp, is staffed with supportive and loving people and Julia responded well to their kindness and attention.

Next week, she doesn’t have a schedule but I am not sending her back to Elliot House. She will go to a sleep-away camp the following week. We have a tour of a program on Monday and during the week, we will go to the gym often. Tuesday, her wonderful therapist, Michelle, is taking her on Codzilla. Michelle also bought her a pair of boxing gloves and learning boxing is an ongoing activity with the hope that it . Perhaps this will be a good outlet for some anger.

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Posted on by Suzanne Buchko 1

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

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