An unexpected free day yesterday turned difficult as I began to see some of Julia’s losses.  After a few weeks of laying off calendar work which has been done every day for months, she has lost the concepts of yesterday, today and tomorrow.  More probably, she never really had them to begin with as her therapists and I have consistently used visuals to prompt her answers.  She has never used the terms on her own in conversation.  Days of the week are also not cemented in stone.  Large concepts of months and years are fading.  

Time has always been an external construct for Julia.  I was beginning to believe that she was developing a time sense, some understanding of the “when” question.  We, or in our case, I are always talking about time: swimming is at 11; church is on Sunday; vacation is next week.  First, we do this, and then that.  None of this comes out of Julia’s mouth unbidden or unasked.

Bike riding, which I was so sure was checked of the list of projects, is unsteady.  For one thing, she does not use her foot brake and I expect that she will always have a bike with foot brakes.  For now, she can put her feet down when she wants to stop and occasionally use a hand brake, but these will not be sufficient if she gets a much needed bigger bike.  I need to decide whether this is a skill to continue working on.  We have been at it for a year.

It is discouraging.  Nothing is easy.  Every piece of learning is hard won and not necessarily won forever.  My own frustration, and something that is hitting home now that intensive therapy has stopped, is the difficulty of keeping all the balls in the air.  This summer we are doing PT exercises that Julia needs for her legs and general strength.  Bike riding is one of the activities that we can do for PT but I had expected that bike riding would be a casual, fun exercise, not a deliberate run around the block working on braking.  And working on braking is not really bike riding to the extent that it is strengthening anything except my muscles as I run along beside Julia.  I wonder how many balls to keep in the air.  Perhaps we can only do what is absolutely necessary.  What is necessary?  How narrow must our life together be?  That feels sad -- to give up on what I thought might be an activity that we could do together and with others.  An activity that she could one day do with peers.

I’ve been going through her school/home papers -- sorting, organizing and putting in files.  I see the great leap in the year around David’s death.  She was ready to learn and took on reading and later numbers, but progress has slowed since that time.  Her decoding has move along and she can read almost grade appropriate books (the caveat here is that she is 2 grades below her age peer group), but her comprehension has not really grown in the past year.  Her reading comprehension scores dropped over the last year.  Granted she is using content better than she was last year.  She was able to take modified tests with support this last school year and her spelling seems to be sticking, but her ability to talk about a story, her ability to explain a narrative she has just read is very low.  She does not infer or remember what she read yesterday or last week which diminishes the value of great decoding.

Most discouraging is to see that her drawing is not progressing any quicker than her reading or math.  Yes, she has innate talent and art work holds her attention for almost unlimited amounts of time but I see the same shapes and forms drawn and colored over and over.  Sometimes there are backgrounds or entire relationships drawn but that is the exception.  And no matter how often someone explains to her about sketching lightly and not drawing with heavy dark lines so that she has the option to erase and edit, she draws dark images and labors long and hard and with great frustration to edit her drawings.  Or she draws darker and darker until the image is mostly obscured by black.  Can Julia acquire skill? 

I’ve read many times over that with puberty can come learning plateaus.  Sometimes learning stops.  I have seen growth in Julia over the years and that growth, however ragged, inconsistent and slow, has been my beacon of hope.  How do I conceive of standing still, of working hard to maintain, of limiting life so that it does not contain what she cannot do? 

Julia is not a good companion or helper.  She is hard work that never ends.  The simplest chore or assignment can sometimes be accomplished without supervision but always needs checking on and often needs support.  Even on my best days during which my patience stretches and bends to meet her needs, I am exhausted.  On days that are not my best, I am angry and desperate.  And very much alone.  It is called a lack of social skills, but much of my loneliness comes from her lack of fundamental interaction ability.

I expect that most parents feel this way at times and most parents with typical kids would say that Julia was just 12 and has plenty of time to learn and grow.  But Julia is not typical.  Reading about a 4 year old, home from China for two months “finally” learning to ride her two wheeler sends me into a tail spin.  Julia has had a week long intensive course on learning to ride her bike, a modified bike, and months of practice with multiple people, and she does not know how to use her foot brake.  

I know that this morning I am staring intently into the half empty glass of our lives.  My greatest fear is her eternal dependence.  I am very tired, seven years tired, of being the only one to initiate, to coax, to plan, to intensely desire to move ahead.  There are few “buts” of comfort.  Sometimes I allow myself the daydream of believing that if I had a partner in parenting, this life with Julia would be less difficult, but even if that was so (and perhaps it would not be), there is no partner here. 

And now I need to stop this downward spiral, pick up a book and perhaps doze before Julia wakes up.