I picked Julia up from school today and the first thing she told me was that she worked all day.  “Except for lunch.”  Yesterday, one of her aids told me that Julia was spending too much time folding paper which was distracting her.  She also voluntarily put away her iPad as soon as we turned into the IDS clinic parking lot.  This was a first for her.  I’ve asked her many times to be ready to get out of the car when it stops, and then usually I have to remind her a few more time.  Yesterday, I asked once, she didn’t move to put it away, and she lost it for the rest of the day.

Julia is still sleeping in my bed because I continue to try to help her heal the sores on her arm and to stop her from peeling the skin on her right foot.  She wears special fuzzy socks that are soft and that she likes a lot and gloves to help her remember not to scratch or peel.  But she forgets.  I lay down with her when she goes to bed to help her remember but so many nights she sneaks off her gloves and is scratching before I notice.  I warn her and sometimes threaten . . . the question is always what to threaten.  Three nights ago, I told her that if I caught her with her gloves off again, she would sleep in her own bed.  And so, two nights ago, when the gloves came off, I told her to go to her room.  She didn’t want to at first, but she recognizes my calm but determined tone now (very Love & Logic based).  She gathered up her dinosaurs -- Lizzy, Sally, two more, and Denby, the pillow pet dino -- and went into her room.  She put on her night lights and settled into bed.  I felt badly sending her out of my room, but ya’ know, I sent her to a bed with soft flannels sheets and a new flannel duvet cover on her down quilt.  Not so bad a punishment!  I worried about her scratching or peeling but she went right to sleep.

When the first alarm went off this morning, I went into her room and snuggled with her until the second alarm.  Then we got up and the day started well.

Last night, I asked Julia where she wanted to sleep and she chose my bed.  She had to bring all the dinos back into my bed.  I warned her about taking off her gloves and she turned over and went right to sleep.

For the moment, lesson learned.

Yesterday, Julia’s class was going to see the Chinese Acrobats at the Overture Center.  This was a big class trip and Julia wanted to wear a dress to school.  We decided on the  dress that Cheshire gave her for Christmas that Julia had not worn yet because it is not really a Wisconsin winter dress, but the day was going to be in the balmy 30’s and she had a pair of heavy tights that would look ok with the dress.  However, after she got dressed, she started scratching between her legs.  She doesn’t do this when she is wearing jeans and she has not done this with other dresses and tights.   I told her a few times that she couldn’t do that when she was wearing a dress but it didn’t stop her.  Finally, just before she left, I made her put on jeans and a sweater.  It was okay and she caught the bus, but it was another sad and frustrating time for me.

And of course, it is all me.  Not her at all.

Julia looked like she is “growing up” in that dress.  It is a very appropriate tween dress and she looked like the 12 that she is.  She looked good and appropriate, of course, pretty, and I guess I took a little pride in how she looked.  I was much more disappointed than she was when she took it off.  

And it was another reminder that we can never slide into any next step.  I will figure out how she can wear that dress.  Perhaps with leggings instead of tights, or more as a tunic than a dress with pants -- I just can’t assume that she can or that she even wants to behave in a way that society expects.  She can be coached somewhat, she can be trained against the worst missteps, but she will not just assume . . . . I don’t have the word.  Julia does not imagine herself grown up the way that typically developing kids do.  She does not play at grown up, she does not pretend she is a doctor or princess or dinosaur keeper.  And so, she has no experience to inform her, no observations to hint.  She does not create her world -- both real and imaginary -- it needs to be created for her.  I am the world creator and I must create and then protect.

She is, however, learning to wash her own hair in the bath tub.  I expect that with more careful instruction she will be able to do it in another few months.  

Mornings with Julia are getting better.  Slowly.  Still lots of urging and keeping her on task from me but she is showing a greater spirit of compliance which helps.  A lot.

I've started taking Linkedin seriously.  Filled out a profile and sent lots of requests for friends or whatever they are called.  Still have no idea of how I will use it.

Busy day today, not so busy tomorrow and Friday.  Julia and I will have two free nights to curl up in front of the fire and consider the flames.  Maybe it is time to bring paper and pastels to our observations.

I have been caught in the mire of self-pity for days on end now, and off and on, but partially acknowledging it, partially asking for help rather unconsciously, and partially engaging in the days so that perhaps I can move on.  And then there are the days of just deciding to get through the day with  few physical chores and be tired enough to crawl into bed and face oblivion at day’s end.  Not too different from all of the therapy that has trained Julia to recognize, name and regulate her emotions.

Sometimes doing what is better for us, enriching instead of fitting out roundness into those square holes.  Case in point, we did not attend the FCC Chinese new year party where I have always felt like the odd family out.  It was fine the first few years when I knew a few families who went -- one with a special needs kid -- but more and more, it seemed like everyone has that perfect Chinese princess and there was no place for us.  This may have only been my perception, but it was painful.  And so, instead of the pain, we celebrated with Robert and Mary and some very good Chinese food.  And that was enough.  

16 February 2013

This morning I was sick to death of living alone.  Sometimes the first person that I talk to, other than prodding and pushing Julia to get out the door in the morning, is the valet parking guard when I park at the hospital.  He says, “Hello, how are you?” and I realize how welcomed these formalities are.  I don’t know if I will ever be happy living alone.  Julia has learned to occasionally ask me how I am but has not learned to wait for the answer and to feign concern.

Julia is using more similes -- looking at a shadow of her head in the early morning, “I have a pineapple on top of my shoulders.”  umm, does it make it a metaphor if she doesn’t use “as” or “like?”

She folder 28 paper cranes to make a mobile for her secret friend at school.  When her enthusiasm waned last weekend because she did not know the name of her friend -- a precaution to keep her from telling the secret -- I revealed the name of the girl.  Julia was able to keep the secret for the entire week.  Afterwards, I heard from Julia’s secret friend’s mother.  The friend loved the mobile and it made it home in one piece with getting tangled.  

Julia’s classroom teacher was her secret friend.  She made Julia a wonderful large collage of animals which will be hanging up somewhere soon.  Julia loves it and it is very dear.  She also baked green dinosaur cookies for Julia and made her a little bracelet.  I had one very happy girl!

She had a good week of learning to tell time in 5 minute intervals; however, when she was asked about some of the terms we worked on perviously -- greater, less, first, last, etc. -- she had no idea.  Autism, ADHD, IQ?  I have no idea.  She does not have the problem with reading.  Words stick.  But she has been reading longer.

If it is that Julia needs more circling back to cement ideas, I’ve started to be more deliberate, intentional perhaps, about using “first,” “last,” etc.  I will not give up on those ideas.  At least, not yet.

One of my mentors let me know that I do not ask for help in the most advantageous way.  I am too direct and go to much to exactly what I want instead of finessing the experts whose time, energy or advice I crave.  Considering the rather lousy results that I’ve gotten lately, I could do nothing but agree with her and walk around feeling bewildered and awful for a few days.  It was awful to hear that after finally coming to an ability to ask questions and to ask for help, that I was doing it wrong!!  

But the day after, I managed an afternoon tea with a contact from the holistic world who has done with a form of yoga what I would like to do with meditation -- bring his brand of positions which are the result of his own theories and practice to the autistic community.  Much of what we intend is different but there are places where ideas meet.  It was a good conversation and incredibly, he was the first person to asked me meaningful questions about my practice with Julia.  The questions propelled me forward over the next few days and during the last week, I have tried to keep Julia more present and with her breath during our morning strong sitting.  

It was a good meeting.  After we work a bit on the new form, I will describe it.  For now, it is changing every days.

Tonight, it is bitter cold outside.  After school, we had therapy at the clinic and then a quick stop at the Apple store because I was having trouble with our iCloud storage which was making Julia’s iPad freeze.  I knew that i was missing something to turn off or on but I needed  a shortcut to figuring it out.  After the Apple store, we stopped for Chinese take out instead of cooking at home.  I wanted it hot and quick.  I started a fire in the fire place and we ate dumplings, dandan noodles, and eggplant in garlic hot sauce while we watched a nature show about the steppe of Kazakhstan. Afterwards, Julia wanted to watch the fire and we curled up together on the floor in front of the fire and just enjoyed the warmth and the flames.  It was particularly cozy and we were quiet until Julia asked to go to bed.

The dream of two nights ago.  Saturday night.

I dreamed that two friends brought me home from eating out.  Mike and his wife who I don’t do that kind of socializing with, and even in the dream, I thought how nice it was that I was getting to know Mike’s wife.  But these are Madison friends and they took my home to the Indy house on Washington Boulevard.  Mike’s wife admired the house and I asked her to come in saying something about how they had never been inside the house.  

After they saw the first floor, Mike made some comment about liking something and then said that they had to leave.  I walked them to the front door, pointing out the storm door that David had made to fit the front door that came to a point on the top.  I went to the porch and noticed that there were a lot of people outside in the long drive way.  Sort of lining up in a loose way.  Some of the people were short character actors, some kinda ugly, and some were young men in tails and top hats.  One of the young men in tails was making fun, sarcastic remarks about the movie that David was making in the backyard.  I was not surprised about the movie, taking its existence in stride, but I was furious about the over heard remark.  I set on the guy like a wild mama bear.  I told him that if he didn’t like the work or respect the filmmaker that he should leave.  I told him that “we” did not need any negative vibes during the making of this film and that his opinion had not been asked for and was not wanted.  I did not fire him -- he who I knew was an extra for some musical number -- but yelled at him as if that would have been the most logical final line.  

Then, I went in to the back yard and sure enough David was making a movie.  It was David but he was pale and gaunt.  I had never seen him that way.  David looked very much like his father and as his father got older he became rounder.  David was never round and although I guess I expected him to look like his father when he was old, perhaps he would have taken after his mother and her side of the family and stayed relatively slender.  Of course, his mother died at the same age that David did and so I have no idea what she would have looked liked as an old woman.  

David had the stubble of a few days without shaving and there was more grey in it than I had seen before.  We talked.  I took both of his hands in a particular way that we held hands together.  I may have taken the bottom of his face in my hands.  I don’t remember anything that we said but it was unremarkable -- a hello after a day away, a few words between takes.  He had to get back to work and I went to sit down and watch the work.  What I saw was a collage of images -- live actors working with a camera and sound crew working, rough cuts of a day’s work, partially finished images with some imagined background moving about, and a finished film.  I knew that what I was watching had to be a dream because the experience was too overlaid with multiple experiences to be reality.

Then I woke up.  

I was struck by two things -- that our Indianapolis house is now something of my dreams.  I have often dreamed of the houses I lived in with my family of origin as a child, but more frequently the house of my very young years and not the one I was a teenager in.  I can’t remember the last time I dreamed of a place I lived in with David, or without him for that matter.  I have more often dreamed of imagined houses and apartments.  I felt that our Indianapolis home has passed into something like a myth, an imagined place, a place held inside but no longer real.

And then, that David would not be the old man of the dream, and that I would never know what he would look like as an old man.  It was not the sadness of grief that struck me but the sadness of a missed opportunity.

And then I wondered if we had done this, made some kind of multi-layered film art experience in some other place.  At some other time.  And that wondering stuck with me throughout the day.

Each week Julia must write a "perfect paragraph" for her literature class.  It is called "perfect" because they are suppose to do a draft, some editing and then write it without mistakes.  This week's topic is about the first time that she did something.  The example of a "first time" was the story of Jackie Robinson playing major league baseball.  Julia understood enough of the story to believe that she should be writing about something important and not merely something like learning to ride her bike.  (I thought bike riding was very appropriate.)  We brainstormed on paper yesterday before Michelle, her therapist came over.  They wrote a first draft together and today she worked on her editing.

This is what she came up with:

Perfect paragraph 2/4/13
Getting a New Family

When I was five years old, I was getting a family for the first time. I was so scared because I didn't want to be with mommy and daddy and Cheshire. I was so sad  because I did not want to leave China. I was squirming on the floor. Mommy and daddy picked me up, and they took me home. They gave me my own bed, and it was cozy.  I sat with my daddy, and mommy carried me around. I felt a little happy. It felt good to put a necklace on my teddy bear. My teddy bear looked cute. My favorite memory of coming home was when I was swimming without a bathing suit and just floaties on to help me not to sink. That's what I felt when I was getting a family, and now we will live in Madison, Wisconsin forever. 

Julia's behavior in school today was not so good.  In social studies, the class is learning to read nonfiction.  They are being taught to check maps, time lines, emphasized words, etc.  Julia is not valuing this instruction and is not listening to directions.  The unfortunate thing is that she likes nonfiction and likes that they are studying Native Americans.  I have no idea of how to explain how valuable this kind of lesson is.  I am sure she is not the only kid who thinks that her lesson is "boring" but she may be the only one to say that out loud.  

On Facebook this past weekend, I let Julia watch a video posted by the mom of one of the kid from Julia's orphanage.  C was a baby when Julia left, and when she first came home, Julia called C her baby when we saw her pictures.  But we never saw the video of when C met her parents.  Julia wanted to watch it and I saw no reason to stop her.  What we saw was Mr. Xiao, the director of the orphanage, sitting next to C, wiping her nose, pointing out her mommy and daddy and sister, all in a relaxed, comfortable manner.  This was nothing like the tight lipped, silent man that we met in August 2006.  My memory of him is pretty bleak.  He was not comfortable with, kind to or loving to Julia.  At one point, he pushed her with a few fingers towards us and said "mama" and "baba" in a gruff voice.  My heart sank when I saw that video.  I know that Julia was not treated well at her orphanage but seeing him kind to another child was too much for me.  Julia recognized Mr. Xiao and the ayias that were with C.  When the video was over, Julia said quietly, "Mr. Xiao didn't like me."  I could think of nothing else to do but scoop her up in my arms and tell her how much I liked her!

Julia seems to be figuring out more multiplication facts.  Her 2's and 3's.  Part of me wants to make sure she understand the theory behind those facts, but then I knew that there are plenty of kids who learn the facts and only later understand the theory.  I can let her do the same thing.

I feel like she is pushing into late second or beginning third grade.

And slowly, she is learning to wash her hair when she takes a bath.

Oh the other hand, when I went out on Saturday evening, she found time to peel her heal a bit.  I don't know whether she stopped by herself or her caregiver caught her and stopped her.  (I have to ask)  The reason to wonder is that although she peeled, it was just a little bit and she stopped long before it would have bled.  So, could be a bit of progress.

I have taken to questioning the past.  Hell, I wake up questioning the past.  It is like some automatic physical process, like blood flowing or heart beating.  Questioning does as much good as regret and regret seeps into it.  

It is a practice to live each day in the present and the comparison to meditation instructions is pretty clear.  When a mind goes away from the breath, acknowledge it and come back to the breath.  When the mind dwells in the past, acknowledge it and come back to the present.  Suddenly the process during meditation is easy-peasy!  Suddenly what I have been hearing and reading about -- bringing this present living into living has some basis of comparison.

Metaphor and application.

Are there a million “duh’s” out there?

Loss still sucks.

I had a splendid day at Waisman on Friday.  My first one.  I have been there since September of 2010 -- absent for most of the 2011 school year -- and it has been long haul of being the bike peddling fish.  And I know that Friday was just one day, and that Monday holds no guarantees.  

On Friday, I was able to do some work at Waisman that felt like it contributed to the community.  It was not complicated work or work that required great expertise or learning, there was little that required unique talents and gifts, but still I could contribute.  The day went like this -- early morning started in the Resource Center loading summary sheets into a newly created file, attending the Grandparents Coffee Group and contributing my $.02, then a meeting with the Trainee Resource Center Team and plans to complete the first phase of our project by next Friday, then a Wiley lecture about Fragile X, gene therapy and implications for wider use, then a LEND lecture about having a business mind, and then facilitating the Life Course Story Team.  

I was able to let go of where I fall short and just do what was in front of me.  I found some joy in this.  I immediately want to qualify that joy and say what it is not, but what it is is a beginning.  It is precious, possibly fleeting, but I am very grateful for this first day of being of some use.  

2 February 2013

Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.

~ Rumi

Today is Groundhogs Day.  David’s grandmother’s birthday.  Who else knows that except for me?  Cousin Ilene, for sure; Cheshire maybe, who else, who else?  And then does it matter?  I guess as long as someone remembers, it matters.  

This path of aging, growing older is full of so many new ideas, theories, pitfalls, dead stops and forks in the road that I did not expect. The path seems so much harder than the path of youth or young adulthood or middle age, but those paths were challenges in their own times.  I don’t really think the challenges are any harder now, although, for me, without a partner, they may take longer to figure out.  

I hope I grow in wisdom.  I hope I can do some good as I stumble along.  I hope I am enough for those whom I love.

There is snow again this morning.  I did not plan time to take care of it before we left for Julia’s clinic therapy morning.  I hope it is not too trampled by the time we get home and I fire up the snowblower.  When I looked out the window upon rising this morning, I sighed deeply, not at all pleasantly surprised by the new snow.  And then had to laugh at myself -- February, Wisconsin . . . What do I expect??

The Rumi quote keeps banging around inside my head, like a overactive racquetball in the white courts at the JCC.  I heard much the same thing, albeit no where near as poetical, from Sr. Francis when I was a senior in high school and very much broken hearted.  I found it hard to believe her and then never told her how correct she was.  I find it hard to believe now.  But what I find hard is only the very last line, the “far better things” that are coming.  I agree, completely agree, with the sweeping and shaking.  And this moment, maybe such a shaking is enough to be able to embrace.