October 16, 2010

Why I Write

Someone asked me the other day what I get out of writing.

Well, I suppose you could look at the time of night when I write most of my posts and figure it is one way I battle insomnia.

But it is so much more ...

When your child has a severe disability, coping becomes one of the most difficult challenges you'll ever face. And I almost hate to use the term "severe" because, really, there are children in this world who can't even eat or sit up on their own, and my child can put away a tall order of pancakes before leaping into a pool and swimming like a fish.

But, still, my son IS profoundly affected by a severe disability.

He cannot talk.

He cannot understand a decent amount of what is said to him (and just how much is difficult to determine).

He is seven-years-old and would very much like to bond with children around him, but does not know how.

And he sees the world in unusual, "atypical" ways.

I truly believe that because he is so limited with respect to language, his other ways of relating to the world take on a depth that the rest of us do not understand.

He is fascinated by what he sees.

The way the leaves blow in the wind, the way water cascades from a fountain, the way sunlight forms shadows on the ground...

We might notice these things in passing.
My son is mesmerized.

He also is fascinated by touch.

He has to touch the ground when he sees that the surface beneath his feet has changed. He likes to press himself into corners. He loves the feel of soft, velvety fabric.

He LOVES my bare tummy. God only knows why. I could stand to do some situps. But he loves to wrap his arms around my waist and press his face into my tummy.

It is weird.

But it is part of what makes Daniel, Daniel.

And it makes me laugh.

But his challenges also break my heart.

Why do I write? And why do I write on this blog, in particular?

Because I know there are other parents out there going through this pain. I write because it helps to communicate with people who understand.

Because I feel very alone. And I am alone, in a sense, despite the fact that several people are in my corner, and I love them all. I write because it helps me deal with loneliness.

Because there are so many other things I could be doing to cope -- and most of them would be self-destructive. I write because it beats the hell out of drinking.

Because somehow, at the end of the day, I have to find some sanity. I write because I have to have a way of clearing my head.

Because there are good things, happy things, happening in my life every day, right alongside this beast known as autism. I write because I don't want to forget the things that make me laugh.

But there is one more reason that I write. A deeply personal reason ... so incredibly heartfelt that only the few people who love me best know what it is. It may be THE biggest reason I write, but it is the reason I will keep to myself.

And now it is time to crawl into bed and stare at the ceiling ... time to count my blessings despite the many sorrows .... time to close my eyes and make wishes ... maybe even whisper a prayer.

Tomorrow is a new day.

I hope it will give me something wonderful about which to write.


  1. Hi from the special needs blog hop. I know that you feel alone-know this...you are not. Really-I promise. Come on over here-where we are building a community..hang in there.


  2. HI! I'm visiting from the special needs blog hop! What a great post!

  3. Hi from the special needs blog hop. I have had a lot of simular feelings as you and want you to know there are others who know.

    I will be keeping in touch

  4. Thank you for this heartfelt post. It is very powerful!