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.

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.

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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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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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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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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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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: 

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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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