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.