Tuesday, June 5, 2012

The Sparkle of Tooth and Nail

No, I am not talking about nail polish or whitening strips.

I've been finding blogging a tough go lately.  I've started lots of posts and saved and moved on from them a paragraph or so in because they just don't feel good or they feel preachy or they don't seem to have much point.

And then I realized something.

Not much is happening in our lives these days.  I mean, life is happening and life is busy, but nothing really blog worthy I guess.  I am working, Leo's working, Maya's off and on at school (May is a hell month for school vacations, basically she only goes to school about 1.5 weeks the entire month), I am travelling for work and pretty busy, we are in the process of arranging a new au pair and I am thinking of going through the annoying process of finally getting a Dutch driver's license since I can no longer get a US license as I am about a decade past being able to prove US residency.  Maya's got about 7 weeks of school left and I am taking the entire month of August off of work.

So, lots is going on, but there's just not a lot to write about.

Maya is in a good place at the moment, although she is neither having extreme highs or lows.  And while of course I'd love to be sailing through life marking one milestone after another, that is not the reality of autism.  At least that is not our reality.  We take a microscopic step or two forward, followed by a step back, or another area which needs focus and attention.

It's a familiar dance by now although the bandleader is known for his surprise change ups.  I am waltzing, fox trotting, jitterbugging and breakdancing, all within the same number.

When your child has autism, nothing much happening can be a very good thing. Often the alternative to nothing much is something awful so you become very grateful for the nothing much.

It's a Woody Allen kind of existence.

So while nothing much goes on in our lives, I read on Facebook on how friends' and acquaintances' children are graduating and getting into fabulous colleges or hitting milestones left, right and center and of course I am happy for them and glad for their achievements.

Of course other children's achievements wake up the worry in me.  I wish I was evolved enough to love other childrens' successes without linking them to our situation, but I am just not.  So I try to be truly happy for them (which is not difficult--really) and not measure my child against others' achievements or not let their achievements diminish my daughter's.

Two years ago my daughter could not swim.  She was not afraid of the water but she would not get in, even where she could stand without an inner tube or water wings.  Just.Would.Not.Do.It.  It's taken two years of swimming lessons and loads of patience but now she is swimming under water, moving both her arms and legs.  She hasn't quite gotten the trick of breathing and swimming in a fluid motion as when she needs to breathe she stands up or treads water, but she can swim from one place to the other.

Even a year ago I questioned whether she would be able to swim, full stop.  And a year later, she IS doing it.  Whether she will be able to pass the test for a swim diploma, I don't know, but really who cares?  She can swim.

I wasn't even sure the swimming would come and it did, so maybe the breathing and the diploma will come too.

Maya has to fight for every single milestone.  That's the challenge of being her.  That's her autism, her concentration issues, her anxiety and fears.  None of it comes easy for her, but she never gives up, she never stops believing in herself and while fear and anxiety still regularly have a grip on her (and don't even get me started on what happens if there is a spider within a 3 mile radius of her), she gets there, in her own way and in her own good time.

I don't know if she will, in the end get to the same place as her peers, no one knows that.  No one knows for sure what capabilities really lie within Maya's grasp.  It is not something which reveals itself in one go, but the curtain gets drawn back ever so slowly, microscopically.

While Maya's achievements may not be as numerous as others, she may not achieve as much or go as far, but each one is a battle which is hard fought, hard won.

And because of that, her light emanates ever so brightly.  She is a shiny, beautiful, sparkling girl.

And because it doesn't come easy, every victory, every milestone, every microscopic achievement is that much more sweet.  

I am so proud of my girl.