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.

prayers & carrots

Leftover 4th of July firework

Prayers!  Maybe a few thoughts too but definitely prayers!  Please. I don’t necessarily believe in a micromanaging god that will rescue me although I’ve always been partial to the BVM.  A touch of divine intervention would not go unappreciated.

Backstory: Months ago when Julia’s transition program began, she was adamantly opposed to talking about future work, employment, volunteering, etc.  This went on for what felt like a long time.  Some of it was fear of new experiences and more transitioning and some of it was just plain digging in her heels.  She digs deep.

The one employment that Julia was always willing to talk about was working at a Comicon—now rebranded as the FanExpo.  This is something that she has mentioned in her IEP meetings for years now, and something the I dutifully tried to talk her out of as an unrealistic aspiration. I mean, Cons are 3 days long once a year in any given place.  This is not a career!

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summer bounty

A big bowl of tomatoes—so many that I can save a small bowl for the next two days (there are more ripening behind those I picked today) and throw the rest into a big pot to make a simple sauce that I will freeze for the winter.  I have refrained from cooking inside during our heat wave—hot food never tastes good to me when it is hot—preferring to grill a bit of protein on my small electric grill (A nod of thanks to Cindy for gifting the grill to me when I left Madison.) and making huge salad with bought greens and herbs from the garden.  Everything from the garden has more flavor and vegetables melt into one another so much more companionably than their supermarket cousins.

I let the tomatoes cook down for hours and what is left is the sweet essence of summer.  I expect the pleasure long after I’ve pulled up the plants and cleaned the garden for winter.

We are quiet today with nothing planned.  Some drawing, a load of wash, some editing for me and reading. Julia plays her music—Ukulele chords are just beginning to make an impression and she has a new cello piece.  Then, Julia picks up her basketball and bounces it around the house until she becomes bored.  She wants to go to the small park around the corner.  She wants to go alone, but capitulates to my entreaty to go with her and sit far away.  I am.

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joni

“The wind is in from Africa, last night I couldn’t sleep . . . my fingernails are filthy, I got beach tar on my feet . . .”

Once, the reedy soprano slid up and down her registers as quickly as her fingers slid around on the neck of her guitar.

She had long, straight hair, as fine as mine but very much blonder. It was flung over one shoulder with a deft flip of her head. Slight with a sweet, high voice concealing genius and gravitas.  (Although now I wonder why genius does not routinely speak in a breathy soprano.)  Hippy clothes or terribly cool apparel—cooler as she got older. Never quite settling down but moving in the company of splendid and beautiful musicians. Never quite molded by the commercial music scene but brilliant enough to wedge her way in, to command attention. Singing about quitting the crazy music scene and then going on to write and sing more and again.

Joni Mitchell sang at the Newport Folk Festival Sunday night as a surprise special guest of Brandi Carlile. It was a carefully orchestrated appearance, her first public performance since a stroke and brain aneurysm in 2015. A friend posted an early morning YouTube video on her Facebook feed. I clicked on the link and then got lost down a rabbit hole of videos catching Joni performing song after song—the highlights of her old masterpieces and the kind of standards that I loved to sing—and playing her guitar.  Her voice—low and chesty, a voice that had come back from near death, an old voice so rich with meaning and inference and innuendo that it was like some rich, decadent dessert.

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newport 3

A closed gate to a garden we never entered.

Our final morning here, we drive the 10 mile Ocean Drive and look for a beach to visit for a few minutes before driving home.  We get to see another side of Newport.  Big and small, mostly modern beach homes with wonderful views. It is quiet here—and I have no idea if it is the middle of the week quiet or just the nature of this side of the town.  No restaurants, no where to tour.  If I was to live here, this is where I would find home.  This area is still not far from where the cottages are and we pass a few former carriage houses and footprints of old green houses.The surf is very small here but it is the ocean sounds in miniature.  The beach is a rocky and coated with a layer of dried sea weed but there is some sand in which Julia can play.  How many times, we have travelled to lovely beaches without sand toys!  Forgotten at home, or impossible to carry.  This time, she has her pails and shovels and there is little to use them on.  No matter, she is happy wading in the surf, picking up and discarding rocks and letting hand fulls of dry sand pour through her fingers.  

When ever I am at a beach, I wish hard to live by water.  Listening to the smallest of waves brings me home, home to a place I have never been.  

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today’s round

the penultimate peony

Morning.  Almost two hours after Julia leaves and I am getting down to the writing that I wanted to do since I opened my eyes.  This morning the round of tasks, not overwhelming by any means, has induced anxiety, enough to notice.  And I wonder if my anxiety can be compared to the way that Julia feels whenever she is asked to do more than two things when she is intent on something else.  It appears that she cannot hold all of that—two asks and her desires—in her head and get to what she wants to do.

Alarm goes off at 7:15 and Julia does come into my bedroom to wake me up shortly afterwards.  A great start to the day. I have a burning desire to start writing, immediately—something which definitely does not happen every morning.  I can’t do that but I consider that there will be only a short hold on the writing.

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solstice

A new season.  The longest day of the year.

Solstice songs

Julia and I ate breakfast on our back porch—something she loves to do that I usually drag my feet about.  Too cold, too hot, too buggy and it is morning and we need to get on with our day.  But today, we woke up on time—Julia responding to the google wake up on the small speaker, something we have been working on this entire school year, something she sabotaged last week, something we had a talk about at Community Connections (a serious conversation at her program can make more of an impression than a similar talk at home), her program, and something that she encouraged me to reset (although I’ve only reset one of the three speakers she disabled—damn  my holding on by my fingertips device knowledge.) lat night.

So, she woke up, did what she needed to do (although she still needs some kind of list to make sure she remembers everything.  And any kind of reminder is anathema to her) and there was time to eat on the back porch.  

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baby shower

Finally today, I have caught my breath.  From the long holiday weekend and the catch up week that followed.  I still have an overdue phone call to my advocate at Healthcare For All and another call to MassHealth.  I’m saving that which I know will be frustrating until Monday.

It was a good weekend.

Justin’s mother and I threw a baby shower for our children and their impending baby boy.  It was a bigger shower than it would have been had there been had there been the planned-for wedding. We invited more people and people from further away than we might have.  Still, there were those from too far away who were missing.  

Still, it was a good party.

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