26 July 2012

Nine days before vacation and I’ve loaded myself with work on the house to get ready for a bit more renovation.  Nothing new in a sense but finishing up last year’s bits and pieces -- new lights for living and dining room, a new mail box, fixing a slow leak in the porch ceiling, repairing, refinishing and updating my front and back door (yeah, working storm doors!!), deck repairs (which unfortunately will be all too visible with planks of wood not matching when it is fixed).  In this house where nothing is modern standard, everything is custom or  renewed.  Once again, I will go away on vacation and a bunch of tasks will get done.  We will come home once again to a house transformed, albeit on a much smaller scale this time.  
I am also back to the physical fallow year work -- basement, yard sale, and eventually family chrono file and pictures -- that I would like to finish before school begins, but with my foot healing and a needy garden and the summer pool I know that much of it won’t get touched until the weather turns.  I’ve also decided to clean my desk -- if it is still under the piles of papers, books, and Julia leavings.  Right now, it is unusable for anything but a pile collector.  I can’t find anything!  And I know there are things that I wanted to consult with this summer in those piles.  Even my mail basket which I attend to regularly because that’s where I keep the bills to be paid, is becoming inundated.
Feeling a bit overwhelmed at what I would like to get done in nine days, but not so much that I can’t take the deep breath and plunge.
I do believe that this is rather normal resilience and energy.  The stream of energy goes on, although I do not take any of it for granted.  I may never take it for granted again.
Julia and I have been touching on many sensitive and tough issues these days.  The other day laying in bed in the morning we talked about growing up, getting breasts, pubic hair and periods.  Sorry to those who don’t want to know this much.  Julia has always been dead set against growing up but her body is beginning to deceive her.  She is growing up and will need some sort of training bra in the fall.  She is not, however, the same little girl who would throw a tantrum when I (or anyone else) suggested would grow up -- and that was only when people would ask, “what do you want to be . . . “  She denied it for awhile this time but I insisted and she began to listen.  When it was her turn to question me, she asked what would happen if she grew so tall that her head hit the ceiling.  I told her that if that happened, and I didn’t think it would, that we would move to a house that fit her.  We’ve talked about that -- a house that fits her -- a few times since that morning.  I know she is a concrete kid and metaphors usually over her head, but this assurance that we will be together and be in a place just right seems to have made growing up more bearable.  
Yesterday, we talked about autism for the first time ever.  Julia is beginning to notice that she is different from other kids.  She knows that she does not know what the other kids in school know.  She knows that she has to work very hard to master things like math facts.  Now, much of the time she doesn’t care.  And she loves the therapists who work with her and considers them her friends, but yesterday we sat on the couch and talked about her working hard.  I told her that her brain works differently than most people.  I told her that she has a wonderful brain but that she needs to be able to go to school and live in a world with people who are not like her.  I told her the way that her brain works is called autism.  I paused before I gave her this information -- all the conversations and ponderings of disability vs difference flooded my brain.  She said she had heard the word but it never meant anything to her.  I told her that it was not an excuse for not working hard or not trying her hardest.  I told her I expected her to be the great person that I could see inside of her.  Will she remember the tears in my eyes?  Will she remember my faith in her?  Will she remember even the word?  Maybe not, but the conversation has begun.
We continue to read Happy Potter, book 1.  I am enjoying savoring the details that I had forgotten and maybe had even skimmed over to get to the adventure.  We talk about everything about it.  I am not saying that comprehension has grown by leaps and bounds, but Julia wants to understand the story and it will be her curiosity that grows her ability to understand.
It is always difficult scheduling OT and speech therapy with all of the other therapy Julia receives.  Because it is a high-demand clinic, there are no set appointments.  Instead there is a “process” of making appointments two months ahead, a process that discourages all but the anal and desperate.  And I’ve wondered whether to just give up the therapy until we are finished with intensive -- so for a year.  But then, we have a great therapy session or one of her therapists says something incredible and I am determined to keep it going.  
That happened on Monday in speech.  Her speech therapist commented on our -- Julia and my - conversation and how they have changed and what I could do to move them to the next level.  And wow!  This woman hears us talking for moments before and after sessions, and she was spot on!  She said I have been accommodating and should now move Julia to accommodate me -- slowly of course, but to consciously begin the shift to a more equal conversation.  Just the idea of a real conversation with Julia is enough to make me sing.  Just the care and attention paid to us astounds.  What angels surround us in this journey!

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