August 31, 2012

Finding the Words


Daniel is nine, as of two weeks ago, and it sounds so .... OLD.

In nine years I have gone from a new mother who believed she was blessed beyond anything anyone ever had a right to expect ... to a very different person with a much more realistic view of the world and of people.  And I have watched my son struggle, through no fault of his own.

I cannot overstate the impact of autism.

It is so much more than a "neurological disorder."  It is a force that robs, that overwhelms, that leaves you feeling woefully inadequate as a parent.

When I look at my son, I am struck by all I do not know and cannot possibly understand about what it must be like to walk in his shoes.   Autism has placed a wall before him, between us, and it is there every day -- limiting what he can share with me, restricting what I can know about him.

With my daughter, it is so different.  She fills my days with countless stories about her friends and adventures at school.  She plans her birthday months in advance; she flies through the house like a tornado -- building fairy houses and setting up hair salons, constructing forts and making Barbie clothes from Kleenex.  She asks me about the meanings of words.  What is generosity?  What is harmony?  What is chaos?

And there is her brother ... lacking the words.

Words, words, words.

It is only recently that my gorgeous nine-year-old son has even tried to say anything.

Let me say that again:

My son is NINE.  And he hasn't tried to say real words until this current year.

For so long, I have wanted to hear his voice.  And now it is as if a window has been opened just a crack.  I  have to prompt him.  "Use your words, Daniel," I say to him, like a mother might say to a toddler.  And I help him -- or at least I try -- find the words.

When he tries, he tries so hard.

In addition to autism, Daniel has apraxia.  So the oral-motor planning that most of us take for granted is a struggle for him.  But he is thinking about it ...  you can see it when he tries.  It is as if I can hear the thoughts going through his head:  stretch my mouth into a smile and tighten my jaw to make the long "e", gently purse my lips together and let out just a little air for "puh", stick that bottom lip behind my teeth for "f."

Just imagine having to stop and think about every little thing your tongue/lips/jaw have to do to make every little sound.

We go through this routine countless times, every single day.  Because if he can learn to say, "I want pasta, please" this year, then maybe ten years from now he will be able to say much more.

Though it will never be like his sister ....

There is so much I do not understand about Daniel.  I know there is no hierarchy of parental grief when children struggle, but autism is especially cruel to the children it impacts, and to their families, because it robs us of the essential foundation of human relationships -- shared communication.

And, yet, even as I confront the grief that surrounds all that has been stolen from my son -- and I confront that grief daily -- I am struck by the irony:  I know about every emotion my daughter experiences, as she fills the air with words from the moment she rises until the late hour when she, finally, gives up the battle to stay awake ... I hear about her friends and disappointments and dreams...

But Daniel is the child who can make the rest of the world go silent when he looks into my eyes.

And so we will keep trying, my son and I ...

to find the words.