September 28, 2010

Someone recently told me "that there is nothing worse than autism."

How do I start to respond to that?

Some people would probably wonder if I consider that statement an attack on my child.

I do not.
I know the speaker did not intend it that way at all.

You can despise the disorder while loving someone who has autism.
I do it every day.

But, without a doubt, that statement makes me incredibly sad.

Sad, because I know as well as just about anyone what it means to hate autism.

It really does suck.

It sucks to see your child struggle to do what most of us do thousands of times a day without giving it a moment's consideration -- we open our mouths and express ourselves. We chat with friends. We order lunch. We tell somebody a funny story, or complain about life's struggles, or reach out to somebody in need with kind, compassionate words.

My son cannot even say his own name.

The statement also makes me sad because I know the dread concerning the future that lies behind those dark words.

Somewhere along the way I have learned to concentrate more on the here and now. It was NOT an easy thing to do. And that is not to say I don't worry about the future.

I sooooo worry about the future.

But to think about it every day would be to make myself crazy.
And I truly believe that somehow, someway I will figure things out for my son as he and I both age.

Call it dumb, call it fantasy -- and some people have -- but I just believe.

I have moments of doubt. I have many moments where I feel like a failure as a parent. I wish to hell and back that my son would one day be able to talk to me.

I wish my child did not have autism.

But I would never say that there is "nothing worse than autism."

Even though I know the pain that drives the sentiment.

My child IS HAPPY. He mostly lives in his own world. But the moments when he brings me into that world are so spectacular -- they are filled with the absolute purest form of love I ever have experienced.

I believe that my child's love is the closest reflection of the love of a Heavenly Father (assuming there is one).

Because my son truly loves unconditionally.

When he likes you, he truly loves you.

He loves you when you've gained 20 pounds.
He loves you when you've had a cranky day and have shown him little patience.
He loves you even when you fail him.

I ought to know.

And there definitely are things worse than autism.

I have had some experience with that as well.

One of them is losing someone.

One of them is seeing someone lose himself.

And one of them is wishing so hard that you could help someone deal with what is the most tragic pain they have ever experienced ....

And not finding any roadmaps.

One of them is feeling helpless.

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