Category: Growing a Daughter

Updates and stories about my daughter from China who came home with challenges described in letters—PDD-NOS (on the autism spectrum), ADHD and RAD (Reactive Attachment Disorder). Her learning curve has been steep and therapy is a way of life. School and social interactions are a challenge. Making art is a way of life. So is a vivid imagination.

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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The questions I’m asking everyone . . .

I’ve been trying to find an appropriate placement, probably a CBDS, for Julia for 18 months now with absolutely no luck. If you or someone you know is going through the same challenge, especially if you live in Massachusetts but elsewhere as well, I’d like to talk to you. Please leave a comment below or email me at suzbuchko@gmail.com.

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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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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moving house

It was my plan to keep up with my online activities and possibility even attend a few Sunday churches via zoom.  So far, I’ve made it to last week’s HILR Memoir Class.  I have a Writer’s Group tonight (Boston Friday morning) that I am missing to take the night bus to Sapa.  We are going for the weekend with Tra My and family and I was somewhat confused about the conversion of days and times when I agreed to tonight’s transportation.

I emailed my group of writers in their early morning, apologizing for my bad planning, and almost immediately got a reply that I should “Have no regrets. You are growing and exploring larger worlds. Lap it up- and take us with you. Have a super time!”

In many circumstances these days, I feel the lift of community under, above and all around me.

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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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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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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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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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