A day before the equinox.  A day before the beginning of summer.  Sitting watching Julia’s swim class -- a little less stressed than I was on Monday when I was probably the only parent sitting at the edge of a chaise lounge tensed and ready to have the instructor tell me that he could not handle Julia.  But the classes are small -- 4 or 5 in her class -- and the teacher is young but not at all phased -- at least on day 4 -- of Julia’s occasional lapses of attention.  I wonder if he has done this -- taught a kid with challenges -- before this.  Julia is swimming with 3 boys and her attention lapses is not a extraordinary as it might be in a class of girls.  And watching the girls in other classes, I think my observation is spot on.  Girls listen, they line up when asked, they try what the teacher asks of them.  

Sometimes Julia hangs on her teacher and I wondered what the response would be, but the boys do the same thing.  And I don’t think any of them has challenges.  Interesting, one of the boys in her swim class is also in her class at school.  His father brings him to lessons and stays around.  When the kids (and instructor) went to the diving board, I got up to stay close and the father of this boy did as well.  I said to him, “Good to have another overprotective parent in class.”

So, to day I can almost sit back on my chaise and type.

A few more Julia things:

After swimming on Tuesday, we stopped at Waisman so that I could finish my work for the spring term.  Julia brought a book, a sketch pad and her iPad and I hoped that I could work for a bit more than an hour.  She found the family waiting room which is next door to to the Resource Center empty and there was a box of dinosaurs, some dinosaur books and a doll house.  She never opened her back pack and played for an hour and a half.  It was the first time that I tried bringing Julia to “work.”  Something I did much too often with Cheshire.  

When we were finished at Waisman, it was lunch time and we crossed the street to eat in the hospital cafeteria.  As soon as we went in, Julia told me that this was where Daddy died.  “Was this food that he did not eat?”  During his last week, David did not eat well.  One of the reasons that I called Cheshire home that week was to have someone else to be in the hospital to make sure that David was eating and drinking.  Julia heard that phone call when I said that and ever since attributed David’s death to his not eating.  At least in part.  

Julia asked if we could bring our lunch to David’s room and asked if maybe he was still here -- as if, possibly we could get him back if we only went to his old room, possibly we could bring him lunch and we could have him back.  The sweetness was heart breaking.  I’ve been in the cafeteria many, many times in the last three years although I remember when being there was sad and hard.  I had no idea the Julia would remember but no question that she did.  Again, we talked about David and dying and never coming home again.  She took it in again.  She did not ask if I was sad.  Something has changed for her.

At Marilyn’s session this week, we worked on the page in the trauma workbook that was about Miao-Miao being sent to school and Julia being told that she was stupid and not allowed to go to school.  She drew a picture of an incredibly angry Bai-Bai fuming like a volcano.  When she explained the picture to us, Marilyn asked if she was really angry back in China.  “No,” Julia said.  “I closed my eyes real real tight and went somewhere.”  When Marilyn probed further, Julia took the page back to draw a small t-Rex and a “machine.”  The dinosaur and the machine ate the Ayi who told Julia she was stupid.  When she finished her picture, Marilyn asked if Julia was the dinosaur.  “No,” with an intonation and could have added “Crazy lady” to her answer.  “I am the girl who is angry.  My friend, Lizzy, is the dinosaur who helped me.  She was a fie dun in China.”

Are these the answers?  Julia, angry and hurt, disassociating and making up the most terrifying thing she could think of to defend her.  Julia, who would only answer to Julia Dinosaur for more then a two years, is now the girl with a dinosaur defender.  And what is a dinosaur now, was the fie dun in China.  

The work book has been so very useful.  Every week we creep a bit closer to self-knowledge.  She owns her own story and perhaps she can heal.

Julia’s lesson is over and we sit, my tapping away and her drawing dancing dinosaurs on the chaise lounge that is now in the shade.  Yesterday, I was feeling like I could not make my body more.  I was going to nap during Julia’s therapy but I went outside to garden instead.  Slowly, very slowly, some of the messy garden beds are getting shape again, some for the first time.  I am working at an incredibly slow and unorganized pace and enjoying it immensely.  

And then, last night I had a dream about David.  It was one of those dreams that is so real that waking up is confusing.  I haven’t dreamed of David in a very long time and I still don’t remember many of my dreams.  In this dream, I came upstairs to our bedroom.  David was in bed  during the day.  I had something to tell him that was happy. I jumped onto the bed and snuggled up to him to lay in the crook of his arm.  I just laid there, smiling and saying nothing, feeling his arms around me and falling to sleep.  When I woke up, I was not sure where David went.  Then I remembered and was sad, but it was a much better the dreams in which I knew that David was gone but had no idea of where he went or why or how.  

Errant thoughts rushing in mighty circles wake me and finally drive me from bed and onto the screen.  It is just after 4.  Isn’t this why I meditate -- to get some control of my mind instead of allowing the wild horses driving my thoughts to pull me this way and that?  Even my musings on the dilemma just get added into the spin.

So, thoughts.  I make a list and then feel depressed by the list.  I need to write it all out and will have to come back to this during the day, over and over to finish it.  Finish emptying my swirling brain.

Julia’s big challenge these days continues to be about being social.  All the social stories, practice conversations and app exercises don’t act quickly enough to satisfy me.  And that is really what it is -- satisfying me.  Julia doesn’t ignore the world but responds and reacts to it in her own time.  When she is engaged in some interest of hers, she is not interested in talking to or responding to greetings from friends or friendly strangers, directions from her mother (and others) or what is going on around her.  “What did I just say?”  I will ask her after she has “Yes, mom”-ed me for minutes on end.  Her “yes, mom”-s are reflexive and do not mean that she had taken in what I’ve said and certainly not that she intends to act on any question or demand or instruction.  

This is hard for me.  It is not hard for her but at some point, it becomes confusing when I or some other speaker expects that Julia has heard the question or demand or instruction, and expects response.  

It is also hard on me and eventually on her when she does not notice the simple greetings of friends and neighbors passing by.  I’ve noticed that two of my neighbors say “hi” to her when we wait at the bus stop.  They say hi to most of the kids waiting there.  Julia is the oldest child at the bus stop and she is the one most frequently not responding.  I worry about the day that even the best intended people just stop saying hi to her.

Julia is not stupid, uncaring or unfriendly, but her interest in what she is doing -- even if it seems she is doing nothing -- trumps anything input from outside of herself.

Then, there is the reverse.  Julia is hyper-interested in talking to me when I am talking to someone else, on the phone, doing business, watching a movie or reading a book.  Yes, all children do this when they are 2 or 4.  Rude children do it when they are 8 and they have not been gently taught how to get attention in socially appropriate ways.  People with autism . . . And it is hard to live with sometimes.  No, hard to live with all of the time.  

Julia’s interest in communication can and often is so very inappropriate with strangers.  Also, with friends but friends put up with it.  Julia catches the eye of other customers in the supermarket or big box store.  She “flirts,” greets people and then immediately launches into what is foremost on her mind.  She is totally unaware of who is appropriate to talk to and who is not, of the appetite of a stranger for why some dinosaur became extinct 65 million years ago and of how appropriate it is to point out the flaws in a stranger.  Most disarming is that when Julia begins to talk, she looks and sounds very typical.  At least, typical enough to draw most people in.  Then, they are very much confused by her.

And I am left trying to navigate Julia’s communication -- trying to get her attention for myself or a friend, or attempting to deflect her attention or prompting her into appropriate conversation.  Perhaps right now, with intensive therapy ending in two weeks, I am just very scared that I will not be able to give her the guidance she needs to learn more about communication, and I am exhausted trying to keep her protected from unkind people and in good graces with those who have been kind to her.  

My primary goal this summer was, no, no, is to not do therapy.  I want us to live.  Only live.  Julia has been in intensive therapy -- almost or mostly 30 hrs a week for 4 years.  I’ve resolved to do very little therapy this summer - 7 hours in July, none in August.  Today, on the first day of summer vacation (when we still have two weeks of intensive left) I’ve woken up burning with ideas of what I should be doing next for Julia.  Perhaps I should be writing social stories about talking to friends and strangers.  Perhaps we should be making a refrigerator calendar to count down the days until therapy ends.  Perhaps I should be previewing her reading and composing multiple choice questions for each day’s reading.  Perhaps I shouldn’t let her reading the first Narnia book because she will not understand a lot of it.  Perhaps  . . . perhaps. . . perhaps . . . perhaps I should remember my intention for the summer.  

But and just to be totally clear, I am terrified, completely terrified of letting therapy and education go for even a short time.  When Cheshire was a kid, we did nothing about education during the summer.  She read, sometimes from a book list, and one year we did Kumon math for her to learn her facts, but I don’t remember ever organizing an educational plan for her.  I’ve done one of those for Julia for longer than our therapy time.  It is very hard to let that go.

Another swirling morning idea is that I worry that if I don’t act on my education/therapy ideas, I will lose them, forget about them, etc.  Probably silly.  Why do I worry about things like this?

I went to a meditation session (umm, don’t know the right word for it) last night.  We “sat” for 45 minutes and then looked at slides of a member’s trip to Burma.  The more usual schedule is to sit  for the 45 minutes and then listen to a short reading and have a discussion.  Someone I know who was there asked me whether I could sit for 45 minutes and I said that I could even though I don’t usually sit for so long.  I am fine with 20-30 minutes, 45 is still pushing it.  I’d say the last half was much more distracted than the first half but I did it.

By the time I got home, I had for a few minutes before going to bed, an inkling of peace.  Not happiness, but peace.  I felt for that short time that so much of what I worry about just didn’t matter in the least.  If Julia goes not further than she is today, she can live with me for the rest of my life and I do have good life insurance for her.  If I never get to promote mindfulness for families with kids with special health care needs, that too will be ok.  I did not need to be concerned about what will happen, I only needed to do the work.  I could let go of planning like letting go of demons.

Then this morning, it all came flooding back and again I was the worrier, the planner, she who can second guess every movement and thought.  Hard to hold onto the blessed peace of moving in the flow.  Perhaps hard not to hold on to anything but to move with the flow.

And now some ego spilling.  At some point, writing a blog, I had readers.  Not enough hits a day to warrant any kind of notoriety, but a steady trickle of family and friends visiting and sometimes commenting.  I enjoyed that.  Part of the enjoyment came from feeling worthwhile -- I was explaining my experience and people were identifying with it or being slightly educated by it or enjoyed the writing.  It was a form of communication when there was no one to talk to.  My ego also enjoy it.

Now, not so much.

Thinking about the not so much, and by that I mean that my blog is no longer read by many people, and certainly not on a regular basis.  I come up with reasons.  Of course, to begin with, my bottom line has always been that I blog for myself.  And that is/was true to a point.  I also blog to be read.  As rather self-centered as that sounds, I want to be read.  

So, I come up with reasons:

I am just not a good writer.  Oh, that hurts.  I so much want to be a good writer.  In my wildest dreams, some publisher stumbles upon my blog and offers to put it in book form, someone options it for a movie and I get rich simply from writing down my life.  That’s my wildest dream and in truth I don’t need that, but I remember one comment from someone who encouraged me to keep writing, no matter how bad or boring it was because it was good therapy for me.  Ok, the commenter said it in much more polite terms, but that comment hurt.

Another reason or two: When my writing was centered primarily on a particularly subject -- adoption, autism, David’s health or my grief -- it drew a particular crowd.  Sometimes the crowd was simply friends and relatives, sometimes it was parts of the adoption community who knew me from my postings on adoption yahoo boards or facebook.  But my topics have become interwoven, muddled and I moan a lot.  I have lost all sight of my audience.  I would try to describe my audience right now but how many paragraphs would that take?  My writing about adoption is not always merry and the events I talk about are not easily celebrated.  My writing about autism is too personal and not always positive or enlightening and never political.  I’ve stopped posting cute pictures -- I still post pictures but on a related blog that is not as easy to find.  And grieving takes so %$^## long and even I can get bored writing about another bout of loneliness.  I comment here that all the fiction and even memoirs about grieving work it out in a year.  I hypothesize that a year is how long any non-grieving person can allow for the trip to hell and back.  Everyone wants to believe that a year is long enough, maybe even too long to be swimming in doubt and tears. “Just get on with it” can echo in my ears all too often.  And I’ve changed blogs so I am not as easy to find.  I’ve tried separating topics and that has not worked for me at all.  

This is what I feel like it is right now (which may change in 5 minutes).  I’ve always journaled or blogged to pour out my thoughts and feelings.  Most often, in the past, the mere exercise of pouring out worked out some of the tangles.  Right now and for awhile, in the midst of my ever continuing transformation from basically happy part of a couple with a stable life to a truly single person with a child with autism, my journaling rarely explains anything to me.  I guess it hasn’t for a long time and being read for other people worked as a stand in for personal enlightenment and growth.  All my “why’s” have deserted me.

Yesterday was father’s day and I had a hard time.  My primary means of dealing with it was to ignore it.  And that worked during the fist part of the day but as soon as we got to church, our minister opened the service with a hearty wish for all fathers present and thought of.  All I have is fathers thought of and the memory of fathers and of losing everyone and being left alone.  I don’t want to remember even the good times and certainly not the missing and loneliness.  I didn’t want any touch with father’s day at all, but to do that yesterday I would have had to hide in a cave, not seen or talked to anyone, and not tuned into Facebook.  Really, I can’t stand the celebration of family on Facebook.  Happy family pictures from years ago scanned in.  Heart felt testimonials to loved ones and children climbing all over daddies and grandpas.

I have become the grinch.  

I am not happier seeing couples holding hands.  Or families with typical children eating ice cream.  

Last meditation class on Tuesday.  I’ve learned a good deal in the last 8 weeks, much of the time it was putting names to practices that I had used previously or stumbled upon in another life.  Not that I was doing most of the practices in the most advantageous manner -- trying to stay away from saying that I did them incorrectly or, worse yet, wrong.  This was an experience of deepening and lessons.  I learned that I really want to have a meditation community and want to continue learning.  I learned how good it feels to take my inclinations seriously.  Following bliss  and all that is just as good as it is billed to be.  I might excuse myself for not always following my “bliss,” citing practical reasons of middle class living and “blaming” David, as if he would have rolled his eyes and disapproved of this kind of bliss.  Possibly, maybe even probably, his eyes would have rolled, but I could have insisted.  Surely, it would have not been the first thing I insisted upon and which later he would have embraced enthusiastically.  For so many things that was out pattern.  What would it be like to live with someone who brought the “crazy” ideas home? 

For a meditation group, there are a plethora of groups in town -- this is Madison after all -- that I could join or casually drop in on.  I can begin with the three groups that are held at FUS, two of which are taught be people that I know from Quest.  I will need to find childcare no matter when I begin -- it does  seem that most meditation groups meet in the evening or so early in the morning that it would conflict with Julia getting on the school bus.  

Yesterday morning, I went to a Japanese Crane meditation group right after Julia got on the bus.  I’ve been doing this form of Chi Gong for more than a year now -- a noon time group at FUS.  That group only meets during the school year and this early morning meeting during the summer and is a combination of two groups that meet at church.  I’ve asked if I can bring Julia next week . I have the group’s approval, but I still have to get Julia up and out of the house by 7:30.  

Julia may or may not be reacting to all the transitions that are upcoming.  She does not acknowledge all of it.  Today is the last day of school and she is excited for summer.  She has not talked about leaving her teacher of two years or the everyday therapists who have done her  intensive therapy which ends at the end of June.  One of our therapists has already left and Julia avoided any good-bye.  She may be doing this intentionally or she may not understand a thing.  It is about time and there are still gaps in her understanding about time.

Sometimes she recedes into her own world which she is faced with concepts that she does not understand.  She can be reached by asking her again and again to re-join our reality, but she usually answers in a perfunctory manner and very much off topic.

Then sometimes she is spot on clear.  The other night, just before dinner, she fooled around when I asked her to put on shoes so that we could walk the dog.  I asked her a few times.  I was in the kitchen and she was in the living room.  I warned her that if I came into the living room and caught her not putting on her shoes there would be consequences.  I got a lot of “yes, mom’s” from her.  I went in, she was reading without her shoes on.  She lost dinner immediately and went straight to bed.  She first refused to do it, but I marched her upstairs and she was able to do as I asked.  She was teary when we talked about it once she was tucked up in bed.  I gave her hugs and kisses in bed, but there was no consequence change happening.  The spot on clear moment was when she asked me if I liked her and if I was going to send her back to China.  She was so (insert appropriate swear word for emphasis) clear.  I had an open channel to her mind at that moment, no confusion, no need to redirect, no need for an aide to interpret directions.  Oh, if only I could reach inside that child and put that spot on clarity front and center. 

She is still such a mystery at times.  

This morning, the last day of school, was the school talent show.  Many of the classes work on a dance to perform for the whole school and a smattering of parents crowded in the back of the cafeteria.  Julia did not make it onto the stage with her class in third grade and was not a full participant last year, but today, it was incredible!  She was enthusiastic and very present.  She kept up with her class.  She was not perfect but she was not the only one.  And she was focused.  To watch her today is to know her potential.  To know that she will do art.  To know that she will have a life with some or all of the pleasures and pain that we all have.  

Such hope from a lip sink dance performance.  

So I’ve taken time to write this morning.

Sitting in Barrique’s waiting for a FUS friend to start camp activity planning.  I am incredibly early and have work that I can do, including this writing which I have not been thinking of as work.  The cafe is crowded but there are plenty of people sitting and typing at laptops, so I have no worry about taking up space for too long a time.  Than, who walks in to meet someone but my big hero and admitted crush.  Yes, I am finally admitting to this crush.  I am on the other side of the room and so cannot eavesdrop or even watch him without moving (which I will not do).  This is not a stomach churning crush -- when will I have one of those again?  It would probably be very healthy to have,  but thinking of  some man as interesting, smart and someone I would love to get to know is not a bad start.  This I say because truthfully, I have not had even a passing interest intellectual or otherwise in the last three years in a man.   Truth be told, I would rather that this crush was my teacher than a Saturday night date, but if I can long for a teacher, maybe a date is not far behind.

Oh, interest in the opposite sex is more than crazy at my age.  Possibly at any age, but youthful libido helped immensely with finding a partner or pursuing a social life.  

Could I write my novel sitting in cafes?  Is it a novel that I could be writing.  Something else?  

I am ready for school to be over for the year and for summer to begin.  I have some ambivalence about vacationing in August but I am ready for days at the pool and slow mornings.

I posted a picture on FaceBook of Julia flying a kite -- something she did last weekend when we went to a birthday party at a park.  She worked so hard to figure it out -- it was a breezy but not windy day and it would have been a challenge for anyone trying to fly.  She persisted and she succeeded and I was very proud of her.  I posted pictures on the photo blog and also on Facebook with those feelings.  But as I've thought about it today and as friends have "liked" or commented about the picture, there was a deep sense of sadness that came over me.  Other parents post football or soccer wins, academic awards, dance recital pictures and graduation and first job news.  I cannot, and maybe never will for Julia.

And there I was, landing right in the midst of not-in-the-present thinking.  What am I worrying about?  My lack of bragging opportunities?  Exposing Julia's untypical development? My fears for Julia's future?  Some concern that our friends will not accept us as we are?  Looking over the list and even having a hard time coming up with the list, I perceive that it is amorphous worry.  Just living in the land of worry that circles around the stress and anxiety of raising a child with special needs.  And such worry serves absolutely no one or nothing.  Concern, planning, looking with a realistic eye is different from worry.  It will take years of serious practice for me to alter this gut reaction to worry.  But I see it, see is a little quicker than I have in the past.  Therein is progress.

And on another front, using eTrade and a small account I set up almost two years ago to learn about stock, I finally bought something!!  Yes, the market is crazy right now and I’ve dithered for a long time as I learned (with Nick’s help) enough to be confident to buy and willing enough to lose some of it.  This is a huge step for me, one that I resolved to take soon after David died.  Change takes a huge amount of time.

This morning, I am grateful for the class that Julia is in this year.  There is a class field trip tomorrow and the kids heard about the possibility of fishing with the caveat that they had to bring their own rods.  Julia was very excited about fishing and asked me to get her a rod.  I know nothing about such things and reached out to the class parents to see if there was an extra rod somewhere for Julia to try.  And, of course, some guidance from some brave chaperone.  Offers for both came back very quickly and I sit here at the breakfast table in tears, grateful to be here, now, in the midst of kindness.  It is not the first time I have been grateful for help and kindness by any means, but it is the first time in a long time that I can feel it deeply.  Like some light shining in on my swampy soul.

I hope that some of the incredibly kind kids in class with Julia this year also turn up in next year's class.

There is change.  For both of us.

When Julia does some bad behavior -- mostly these days not listening in a timely fashion -- I immediately give her consequences -- like, in the car going to therapy this morning, she was supposed to eat breakfast.  Instead, she played with her iPad and when we got to IDS clinic, she had not touched her strawberries.  And so, no iPad for the rest of the day.  She is angry but contains herself.  She apologizes and tells me she will try again next time.  When she gets out of the car, she wants to hug me.  We had two instances of consequences this morning before we got to clinic but no angry words. I know she is getting angry because she almost immediately forgets why there were consequences.  Her concentration is completely on her loss.  I ask her what happened (lost the iPad for the day) and why (did not eat before playing).  I still need to connect the consequences with the reason for them.  She will learn eventually, hopefully before she is 35.  

I am at a meditation retreat today -- the day-long retreat that is part of the MBSR course.  There will be three or four classes here today and the room is lined with chairs.  I feel a bit tentative but more sure of myself than usual -- I feel like I am part of this world although I would be hard pressed to define what I really mean by “this world.”  I have the sense of belonging.