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.

Just Take It

My boy is getting older.

And stronger.

And things are not what they should be. They are not what I wanted, what I hoped for, even after I began the difficult process of accepting the "A word" and altering my dreams.

There are moments when the autism -- my son's autism, the autism that fills my family's days -- is so profound that it is like a slap to my face, a punch to the gut, a kick in the ribs .... a beatdown, when I am already face first in the dirt.

These moments come when I feel like my son is tormented by his inability to communicate with the world around him.

I cannot begin to imagine what it must be like to live inside his world.

I am rarely at a loss for words. The irony is not lost on me: how is it that MY child could have THIS problem????

I see how much he suffers and I wish I could give him my voice.

The medical geniuses of this world have discovered how to transplant hearts and lungs, kidneys and parts of livers .. they can pull bone marrow from one person and use it to cure cancer in another, they can remove skin from part of a person's body and graft it some place else ....

So, why, oh why, can't someone figure out how to take my voice and give it to my child?

They could take it. I'd go without.

They could take the part of my brain that controls language.

They could take the whole damn thing.

If it meant my child would no longer struggle.

I am not sure how much of my gray matter is still working anyway.

This world of autism is a lonely place.

It is so damn lonely for my child.

But it is lonely for the ones who love him, too.

It causes us to worry endlessly, to doubt ourselves, to grieve the loss of dreams.

It causes us to do things we never, ever would have dreamed ourselves capable of doing.

I smile at friends as they talk about the achievements of their children. I would never want them not to share.

But, wow, are there reminders -- everyplace, at every turn -- of just how much my life, and my family's life, is not what I had expected it to be.

So, figure it out, medical world.

Figure it out for me.

If it means taking my voice, then just tell me how and when.

I'll do it.

Just take it.

As long as you give it to him.

Star Light, Star Bright

My daughter recently asked me to help her wish on a star.

Where did she learn that concept, I wondered????

TV? A book? A friend?

I just know it wasn't me.

Sigh ....

Add it to the list of things I should have thought of to teach her but didn't...

Anyway, how delightful that she wants to do this -- to say the words I used to say when I was little, words I used to believe in ...

Just like I beleived in Santa and the Tooth Fairy ...

Just like I believed in magic.

So, off we went to the driveway and we said the words together:

Star light, Star bright
First star I see tonight
I wish I may, I wish I might
Have this wish I wish tonight

She asked to say it again.

No, just one wish each night, I told her. Only on the first star you see.

If only ...

If only it were that simple ....

And, yet, I found myself wishing with my daugher that night.

And I wished again when she asked the next night.

I closed my eyes and said the words I thought in my head... and felt in my heart.

It wasn't even her brother for whom I wished ..

even though I would give anything, do anything, to see him no longer struggle with this horrible thing called autism.

No, it was not my boy for whom I wished ...

even though I wish for him all the time.

It was for someone else.

If only it were that simple ....

To Sleep, to Dream, to Speak

My five-year-old daughter has been talking in her sleep a lot lately.

And what she says sometimes worries me.

As if I need more to worry about ....

Just a few minutes ago, as I sat on my couch with my lap-top and Cheezits, wide awake despite my fatigue, I heard her scream out from her bed:

"I can't do this, I can't do this, I can't do this."

Geez. What in the hell is she dreaming about?

I think about the possibilities.

Is she thinking about school?

I enrolled her in an excellent, but hoity-toity private kindergarten this fall, after three years at a preschool where the primary focus was on being a good friend and helping those who need it (i.e. the students in the class who are on the autism spectrum).

Now she sits each day in the world of "perfection." Her classmates probably have been drilled with phonics flashcards since the day they started eating whole foods. Their mothers pull up to the school in Escalades and Lexus SUVs,in full makeup despite the fact that they are wearing Nike gym clothes -- probably headed to pilates. And my poor daughter marches in with her flip-flop-wearing, barely-holding-it-together-mother who might have forgotten to brush her teeth the night before.

I threw her into this new, challenging -- "Let's all read from our readers even though we are barely five-years-old" -- environment. I put her there even though I have not given her the attention she deserves, even though I have not taught her the things I would have if I had been living a different life -- a life untouched by autism.

Sink or swim, Olivia.

Is she thinking about her brother?

My darling daughter is two years and two weeks younger than her brother.

But she surpassed him developmentally when she was just ten-months-old.

And, every day, I see the signs.

I see the signs of a sister who loves her brother as much as she worries about him.

I see the signs of a girl who understands that her brother is different and disabled, and isn't at all ashamed, but is sometimes very annoyed.

And who wouldn't be???

Why should a five-year-old girl feel the need to race after her seven-year-old brother if he ventures down the aisle at Walmart?

Why should she tell me in the middle of a department store, "You have GOT to hang on to, Daniel. We can't lose him!"

Why should a five-year-old be telling other children about "autism," in situations where even her own mother frequently struggles to find the words.

It is not fair. It is not right.

But it is her reality.

Is she thinking about me?

Does she realize just how essential she is to her mother's happiness?

Does she know that she is the ONE THING that has kept me from completely falling to pieces the past two years?

Does she know that, without her, I don't think I could get out of bed each morning?

Does she realize that soemtimes when I hug her before she drifts off to sleep, that I can barely bring myself to let go? That I put my face next to hers and take in the very smell of her, the very feel of her cheek against my own?

Oh, dear God, no wonder she says these things in her sleep .....

I have to do better. I have to try harder...

To make her see how beautiful she is.

To make her understand that my feelings of anxiety and panic and sadness have NOTHING to do with her.

To make her feel at peace.

I had a moment last Saturday evening.

A very powerful moment.

A wonderful moment.

And that is saying a lot.

Because in the past two years, I have had some hellish moments. And they just keep coming.

In waves.

Waves ferocious enough to knock me over. To pull me under. To crush me.

But I am trying to keep my head up.

And swim against the tide.

This moment last Saturday involved a woman who has become so dear to me that words cannot express her value.

I spent the afternoon in her home. My daughter played with hers, and I bombarded her house with my sadness, my anxiety.

You'd think she must be so sick of me. Talk about a downer of a friend.

But she still calls every day. She listens. And every word she says to me is said in love.

After an afternoon of watching football (let's hope there are better things waiting for the Horns next year, BTW), we went to a nearby park with her two kids and my daughter.

I watched my daughter being so happy with hers. I was so grateful for the opportunity to see her being a kid without any worries about autism. Her brother wasn't there for her to worry about, and, every now and then, she definitely deserves that. (Thank you to my wonderful parents for making sure that my beautiful boy was happy and well cared for that day. He couldn't have been in more loving hands.)

It came time to go home. My daughter wrapped her arms around everyone and gave good-bye hugs.

I reached into my friend's car to kiss both of her kids.

And it happened.

I have told my friend before how much she means to me. If she ever needs blood, a kidney, bone marrow, part of my liver .... its hers. And I have told her, if there ever came a time when her kids needed someone to care for them, I would gladly do it.

I meant it. I would do anything for this woman.

But, there was something in that moment, when I reached in and placed my hands on her children's faces and kissed them both.

I felt it. If there was ever a reason when, God forbid, their parents were not there .... and they needed someone ....

I would love these two beautiful children every bit as I love my own.

I am probably one of the LAST people she would choose for a guardian, given my own messy life and multiple problems.

BUT, man, would I love those children.

It surprised me just a bit -- this feeling that I could love any kids as much as I love my own.

But there it was.

A reminder that my heart is still working. And that it is capable of new love, despite all the beating it has taken.

It is a good thing to know.

When Class Lets Out

It is my favorite moment of the day, five days a week.

Those mothers out there who have a child with severe autism, as well as one or more neorotypical children, will know what I am about to describe.

Because they all have a moment like it.

A moment each day when their hearts nearly burst right out of their chests.

For me, it is the moment when I pick my daughter up from school.

She attends a private kindergarten. She turned five just two days past the age cut-off for public kindergarten. I did not want her to sit out one more year, and she can attend first grade at our local public school next year if she attends private kindergarten. So despite the significant cost of tuition, I signed her up for a great dual language kindergarten close to our home.

At the end of the school day, teachers bring the students out into a large open area in the middle of the building. The kiddos sit in a line with their classmates and wait to be picked up.

Parents walk down a long hallway to get to this waiting area. You can't see the children until you get to the end of the hallway and look around the corner.

THAT moment -- that moment when I peek around the corner and spot my daughter -- is my absolute favorite moment of the day.

There she sits, totally in the moment, always with two or three or more friends.

TALKING.

Talking, talking, talking.

Giggling, imagining, showing off toys that she stashed in her backpack on the way out the door that morning.

Sharing the secrets of little girls.

I stand there as long as I can before she notices me or before I start to wonder if the teachers think I am a freak.

I want to freeze time.

The other parents come and go. They round the corner and holler for their children. They exchange a few words with the teacher and off they go.

"WAIT," I want to tell them. "Stop and look at your child. Your son or daughter is amazing. Look what your child can do. It is a gift."

It is only a moment.

But it is such a treasure.

Lovey

For just one day,

I would like to be my cat.