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.

week of thanks

A week of New York City, Queens, in particular with excursions into Manhattan, the center of  . . .

Julia noticed that the streets of the West Village were “like Torino but in New York.”  She marveled at the windows of Li-Lac Chocolates with dinosaurs, old telephones and a chess set in chocolate.

Julia and I visited Google, as the guest of a cousin.  It is a wonderful, strange, some what disconcerting world.  Huge floors with unusual work spaces– Julia wandered into one, quicker than I could stop her, attracted by the toys on top of a computer–play spaces including a Lego work space that Julia is still talking about.  Honestly, their wall of Lego parts was as big any at the Lego stores.  It is an edgy design, some cool Soho and loft like, some gritty industrial.  Along some halls there are cubbies and hideaways  and the cafeteria, the one that we saw, feeds employees like an upscale restaurant for free.  What would it be like to belong to that club?  Taken care of or shackled?  Or both.  It was fun!  And vaguely scary.  Like dipping into a world apart from the city.  Apart from any life that I have lived.

We spent most of an afternoon at the Guggenheim’s Burri exhibit.  It was all very modern and abstract.  Julia has not been very interested in the abstract but she listened to the commentary (I finally figured out how to download a museum’s app! Yay!) and appreciated many of the pieces.  There was a large canvas that had sheets of metal attached and soldered together on it.  After listening that Burri lived close to a town with notable Renaissance frescos in the churches and how he was influenced by that work, Julia noticed that the solder lines were like a crucifix and the few red splotches are like Jesus’ blood.

Well, I didn’t see that.  All that abstract work, prompted realism and coloring.

Cheshire took us to the Flushing China Town which she claimed was bigger than Manhattan’s.  It was huge, a bit less polished than its Manhattan cousin.  We ate fresh noodles in broth with a few kinds of meat, green veggies and spicy red stuff.  The streets were lit with more signs per building than could possibly be read, reminding me of old pictures of the Lower East Side, long before my tenure in the city.

A few days before we left for NYC, I managed to buy tickets to “Spring Awakening,” a musical revival produced by Deaf West Theater.  It is as splendid as what I have read suggests.  A musical with deaf and hearing actors, one in a wheel chair.  Deaf actors dancing!  An assemble so tight that they seem to breathe as one.  A chilling story of Victorian (?) oppression and teenagers being the fearless explorers that they naturally are.  A wonderful set, incredible lighting-such rich fare for eyes and ears.

I wanted to see this show.

But

It has a limited run and tickets were scarce and expensive.  I didn’t imagine I had a chance of seeing it and these days I suffer more than usual from not seeing theater.

But

I was enamored by the show and joined its website a few months back. Then last week, there was an announcement that in honor of the ADA (Americans with Disabilities Act) 25th anniversary, they would be offering a few $25 tickets for thanksgiving week.  I clicked through and bought two for the Wednesday matinee (the only tickets I could find) before I knew who I would take, so amazed that I really got them!  A friend and I sat in god’s heaven-the ensemble work only enhanced by our bird’s eye view.  It was marvelous!  And I was very grateful for the gift.

We celebrated at Cheshire’s boyfriend’s family with more food and conversation than any one person could take on.  It was delightful with at least one parting comment that someone hadn’t gotten to really talk to me and a hope I would be back before next thanksgiving.  Cheshire surprised me by arranging for an old friend from Woodstock (the town, not the festival) to join us.  We talked our way through the 24 hours of his visit.  Wise friends are truly a gift.

I wished I had taken more pictures.  I am happy I could enjoy the presentness of the moments without the need to record.  And on return, I fit back into my day-to-day, squirm a bit not much, and I feel a growing awareness that I will return.  I do need to live in that city again.

 

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a few small notes on days

image6Presentation done, class taught.  Now, time to erase and restore my hard drive.  Hopefully, if I followed directions, if my back up drive is as it should be and the path of restoration is smooth, I will be 100 percent back to the present by the morning.  By present, I mean the end of September on the hard drive and 6 weeks in the cloud.  If I’ve messed up, I will really be living only in the present.  Not going there until it happens.

Breathe.

As it happened the erase and restore went somewhat smoothly; however, I did not capture every bit of my last month’s work in the cloud and a few days of chaos ensued.  It is mostly ok now.  At least, I think so.

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Falling

IMG_4263I want to capture Autumn and Fall in words.  I start over and over again.  And fall short of my expectations and so don’t post.  And Autumn and Fall move on.  Oh, the metaphors.  How many stories put aside in search of better words?

Half of the trees, maybe more, stand naked. There is a brilliant mix of orange and gold in the background interspersed with faded green and divided by the dark bare limbs of the giants who are the first to retire to their long sleep. There are fewer trees that are seemingly lit from within and I stare hard at those that remain, memorizing the effect.  The days have turned warm again which enhances the sweet smell of decomposing leaves that crinkle under my feet by the back door.  Does anything smell as good as fallen leaves?

And I have a little bit of myself back again.

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morning wars

“But today, there’s this—the happiness that comes from working again . . . ”

IMG_1896Hard day yesterday.  Julia not in school until 10:30.  Early morning was a war of wills and I got angry.  Is it unfair and unreasonable for me to depend on the the upstairs morning schedule sheet and the downstairs morning schedule sheet to get through her morning routine and out the door on time for the school bell to ring?

Short answer: yes.

Julia, more intent on getting a necklace untangled than on brushing her teeth, more interested in the skirt she is making for her equestrian girl doll than in eating breakfast.  And me, working quickly through making breakfast and lunch and willing the school readiness train to stay on track.  When it skitters off, when Julia’s scheduled tasks derail for the fifth time, I get angry after she tells me, “I don’t want to do any work.”  Work?  She is doing nothing but self-care.  The morning is devoted to getting her out the door, fed, dressed and organized for the day in as pleasant a fashion as possible.  She is viewing it as tasks outside of her responsibility, and I take it all personally.  She’s struck a rich vein of my frustration.  Control of the morning’s process drains away.  If only I could throw in some towel and hide my head in the sand.

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Inertia

First day of 7th grade
First day of 7th grade

Energy is a peculiar thing.  Not just physical, as in, I got enough sleep to be able to climb stairs, deal with difficult people and cook another supper.  It is mental, as in, I can envision and do the small step towards getting my big dreams accomplished, and spiritual, as in, I can spend the morning editing my overgrown garden and know I am just where I should be.

I was at the first Quest Retreat this past weekend.  I was one of 6 staffers and came home exhausted.  I slept well Sunday night but it took until Tuesday to begin taking small steps again.  I’m still busy on that never ending to-do list and spiritual energy is on the back burner.  Hope to get there without untoward delay.
I feel a pressure to get cracking on the two Mindful Circle workshops that I have scheduled at the end of the month.  I had no one sign up for the summer workshop and I am feeling the dread of that happening again.  I am awful at promotion, especially self promotion, and so I drag my feet and sweat over doing it.  How would it be to change that?

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happy new year

First day of First Grade
First day of First Grade

First day of school.  Forgot to take a picture.  Other than that, a good send off.  Julia picked her clothes last night, woke up with a minimum of complaints, did morning routine (a week with printed schedules is paying off) and walked into the playground alone.  I hope she made it to the classroom.

I watched from the car.  A moment.  Julia in the middle of the small middle school playground.  She looks around.  She begins to approach one cluster of girls and then another without making it to either.  What is she thinking?  There is still no friend, no one she can be sure of a greeting from.  No one she recognizes as someone she can be sure of.  I know of at least a few.  If I could, I would mold a friend from clay and breathe life into the form for my girl.  However, realistically, if this approach might be considered realistic, Julia is still not a good friend herself.  It is her inability to do more than greet and exchange non sequiturs with someone that keeps her from developing friendships.  My heart goes out to her — I want to keep her spirit brave until she figures out conversation and friendship.  I want her continue to be willing.  I worry (as if worry would do any good) that she will decide that other people are not worth the work of learning how to communicate with them.

I watch from the car.  A moment.  Julia stands in the middle of the school playground.  Alone.

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The last Camp AweSum photos

Our baskets. We each made two over the week.
Julia doesn’t seem to have any fear on a horse.
And she likes to pose.
Everyday arts & crafts made Julia very happy
The second evening dance. We hadn’t brought a skirt or dress so Julia zipped and tied her wind breaker to look like a skirt.
Ringing the meal bell was a privilege and meant being early for a meal.
Last day beach time. Too cold the rest of the week but even that was okay.
Julia and Lexi just before it was time to leave. It was lovely to watch them work and play together.
Getting three kids on the spectrum, one dog, one blind pastor and a sibling all looking towards the camera at the same time was . . . .

Looking for how to keep the entire gallery on the front page of the blog.

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Path to the labyrinth

Thursday and Julia said she is sad to think about going home. She is horseback riding this morning and if the weather holds we will do it together this afternoon. Weather has not been good by summer vacation standards. We have a lovely lake and beach, and canoes, kayaks and paddle boats. I have not had my bathing suit on to take the swim test, neither has Julia. And the beach has been empty. We have not minded; we are busy. Art activities, four baskets woven, shirts tie died, and painting, puzzling and rainbow loom. Walks and camp fires and an evening dance. Julia has not asked for her iPad and more often I must discipline myself to find time to write.

In the grey with peaks of sun and blue, I find a quiet joy and it is joy aplenty.

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Camp AweSum

What I am not doing this morning. Enjoying the view.
Our cabin. Small, comfortable with surprisingly good beds.
The swimming dock.
Sensory swings.
View from our cabin porch

Monday morning around 3: First night at camp and I am not sleeping. For no good reason. Tired from the 4-hour drive up to the northern part of Wisconsin. Lake country up here. And more pine trees lining the road than disiduous varieties. We are installed in a tidy cabin with a view of Moon Lake at Camp AweSum, a week long camp for families with kids on the autism spectrum. Gentle rain falls, light blanket temperature quite nice for slumber and sheets from home that are worn soft with washing and wear. Julia has her own room but a few cracks of thunder brought her into my bed. There is room for both of us but not when I need to turn on the light and dig into a book.

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directions

imageThere is something about patience and allowing the path to unfold before me that has usually eluded me.  I tend to push, prod and force myself in directions that become uncomfortable and later untenable.  And then there are days like Saturday.

We went to the Art in the Mill Park in Paoli (http://artinthemillpark.com) and after looking at all the all art, crafts and welded garden dinosaurs, Julia settled herself down at the kids art area and started work on a miniature foil and tape dinosaur that evolved from t-Rex to something aquatic with a dress.  I got bored watching her careful work and with all her attention on the blue Dino, I wandered over to a nearby booth maned by the parents of a young man with developmental disabilities.  His work–colorful, joyous, very optimistic– was selling like . .. Well, doing better than most anything else there.  I engaged his father, Tom, in conversation, careful at first.  Probably too cautiously but Tom was willing to talk, telling me his son’s story until I find the confidence to ask how they managed this–the booth, the post cards and tee shirts, prints, posters and framed originals.  How did they start?  Short answer: taking a huge risk and investing in what their kid loves doing.  He told me about business plans, transition, working in art, investment, 501(c)3’s, and how his son loves theatre and uses the money he makes to bring her friends to shows at the Overture Center.  Alex’s mom joined the conversation and she told me more, emphasizing connections, community and how to figure out an artist’s market.  They told me their son has three jobs, does art, has enrolled in a college program and has his first big commission.

The blue dinosaur grew.  And a dress was designed. Continue reading →

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