December 30, 2009

And the Eyes Have It

Brown, orange and green.

Those colors swirl in the eyes of my son. It is a beautiful combination.

And the lashes ...... oh, the lashes. I sometimes wonder how he can even see anything. Don't his lashes get in the way? They are so long, so beautiful.

What lies below the surface of my son's eyes?

Those eyes of my child, those sparkling, beautiful eyes, see so much more than what most of us see. Of that, I am certain.

Just before he turned three, his obsession-of-the-moment was water bottles. Who knows why. It is just one of the many things I can include on the list of my son's former quirky obsessions -- things that started to drive me so very crazy that I thought I might lose all sense of reason. And, then, one day, for whatever reason, they stopped being important to him. And he was on to something else. But when he was an old-two and a young-three, my son LOVED empty water bottles. He loved to throw and roll them on the ground. Over and over and over. I am not talking some cute little game here, people. I am talking "weird."

Autism weird.

I never knew why water bottles were all the rage for my son back in the summer of '06. Still don't. Was it the sound of the bottle bouncing on the ground? Was it the movement? I suspect it was the latter. My boy is mesmerized by movement. Visual stims, some might say. The way the water from the faucet ripples into a full tub. The way the leaves blow in a strong wind. Reflections. Shadows. He is fascinated by them all.

During his water bottle stage, my son could spot a single water bottle from 100 yards. He could pick it out amidst a mountain of clutter. We could be in a crowded, noisy, busy environment -- a community swimming pool, an amusement park, the zoo -- and the second someone abandoned a water bottle, my boy would pounce. I wonder now if his need for that bottle wasn't like an addict's need for drugs. It was so extreme that, when his dad and I would take him on one of our outings to the local pool, one of us would go in first and move the recycling bin full of empty bottles out of our son's eye-sight. And, as the summer progressed, we learned that "out of eyesight," when it came to our son's eyes, was an increasingly difficult burden. It was as if the boy had eyes, not only on the front and back of his head, but also extending from a ten foot antenna attached to the top of his noggin.

There was no safe spot for a bottle to hide.

He sees things, my boy. He sees some things long before I do. And sometimes I see them ONLY because he has seen them first.

As any of you who know my son can attest, nobody can spot a tray of cupcakes before my boy. He could be standing with his back to the crowd, supposedly immersed in his own little ritual, and if someone brought in a chocolate cake, or a box full of ice cream sandwiches, or even a bag of peppermints, he would turn on a dime.

I am telling you, his vision extends a full 360 degrees.

So, what, then, does my son see about this world, that, I in my 34-plus years, have never noticed?

How many things does he see that I always will miss?

I try, some days more than others, to see things through my child's eyes.

I really do sit back some times and watch those trees. It is an effort, but if I really try ... if I really try to let go of the stress, the worry, the fear .... I can lose myself in the water cascading down a creek bed. It is only for a moment, because God knows I also have to make sure that Daniel isn't hurling himself heard-first into that creek bed.

But, in those moments, when I am trying so hard to see the world as my child does, I wonder how much happier we would be if we could tune out the words ... if we could tune out the babble, the chatter, and the shouting ... if we could simply ignore the sermons, the lectures, the arguments, and the pontificating ....

If only he had the words to tell me, that sweet boy of mine. If only he had the words to tell me how much I miss, each and every day, because I get so wrapped up in words...

If only he could tell me just how amazing this world is, when you really let go of the noise and focus on the simply amazing .....

I am trying, my dear boy. Honest, I am. I am trying so hard to see the beauty I take for granted every day. I am trying so hard to focus on the world as you see it. And, yet, at the same time, I am trying so hard to bring you into this noisy, speech-filled world. I want you to be a part of it, as much as you possibly can.

I want you to know exactly what it means when I tell you I love you.

I know that I see love in those eyes of yours, my son. When you bring that gorgeous face of yours and stare deep into my eyes, the reflection of love that I see is every bit as real as the words that come from your sister each night when she tells me how much she loves me.

And I know that I do not always show you the patience you deserve. That I get way too caught up in the importance of words.

But, without a doubt, there is no greater beauty than the love in your eyes, dear son. And, despite all of the stress, and all of the worry, my eyes have forever been changed as a result of being your mother.

December 12, 2009

December 7, 2009

My Daughter's Wish List

While driving my daughter to school this morning, I asked her what she would like to include in her letter to Santa.

She told me, "Some new clothes and shoes."

Momentary pause ....

"And a box of gold."

Smart girl.

December 2, 2009

To Saudi, with Love

I got a phone call today from a dear friend. She lives half a world away.

She lived in this country for not quite a year, in this same Texas town where I live, the town I moved to with the kids back in '07, so my son could attend a preschool that provides special services for children with autism.

She, too, came to Texas with the hope of helping her son. He also has autism. His name is Rayan.

She moved all the way from Saudi Arabia. With her son and daughter. And she was pregnant. And her husband couldn't come with her.

She gave birth to her third baby, little Omar, in a foreign land, without her husband, all so Rayan could receive therapy that he would not be receiving back in her homeland.

If it weren't for autism, this woman and I never would have met. And as much as I wish I could change things for our sons, as much as I wish I could close my eyes and make a wish, and our two beautiful boys would wake up tomorrow and speak to us, as much as I wish that I could erase our son's challenges .....

I am so very glad I know her.

She is an amazing mother. I watched her with her children. I saw patience during times that would have caused others to scream in frustration. I watched her son bite her when he was scared and nervous. She never even flinched.

My friend is back in Saudi Arabia now. Her husband grew tired of living apart from his family, which is totally understandable. I know all too well the toll separation takes on a marriage. My friend was reluctant to leave the US because she wanted her son to have every chance, to receive the therapy he would not be receiving back at home.

But her husband told her she had to return home. And so she left.

I miss her very much. I think about her every time I drive by the apartment building where she and her children lived.

I think about just how much I have in common with this woman, despite our remarkably dissimilar backgrounds. I am embarrassed to admit that a few years ago I probably would have assumed otherwise. What would I, the outspoken liberal daughter of a Catholic mom and agnostic dad, have in common with a Muslim woman from Saudi Arabia?

Now I know better. Our similarities go so much deeper than our love for our sons. They extend to the way we view our children, our families, the world.

And to think that I might never have learned that lesson if I had not met my friend, if we had not reached out to each other the way mothers do when united in worry for their children.

Things have not gotten much better for my dear friend. Baby Omar is developing well, thank goodness. The oldest, Sarah, is close to her cousins and extended family. But Rayan still struggles. And my friend worries about him constantly.

Oh, dear Dina, how I wish you lived closer. I wish I could wrap my arms around you right now and tell you how sad I am for your pain and your sadness. I know how hard it is when you wait and wait and wait to see some huge gain in your challenged child.

Before Dina left Texas, I gave her some pictures. I framed a series of photos of Sarah and my own daughter that were taken at the local botanical park. They are silly, happy photos: two girls dancing and playing, one obviously in awe of the other, much older girl. I gave her a picture of Rayan, sitting at the top of a slide, with his thick curly hair and big brown eyes, totally at peace with his surroundings. And I gave her a photo of baby Omar, which I took one day while he was at my home, sitting in the same little Elmo chair my own children loved to sit in when they were babies.

Dina told me that all of these pictures are on display in her home. That she thinks of me when she looks at them.

I can see those pictures so clearly. I have copies of them in my own albums. It is amazing to me to think that those memories, those deeply treasured memories, are hanging on the walls of a home in Saudi Arabia, and that they are held deeply in the heart of the mother who lives there, just as they are held so deeply in my own.

December 1, 2009

My Morning Sunshine

What do I love best about my son?

There are so many things.

His big, contagious laugh.

The way he sneaks off with his sister's snack or drink, after quickly checking to make sure she isn't paying attention. He is a regular Swiper the fox. (Sis is usually too engrossed in conversation with me to even notice -- what irony.)

The proud look on his face every time he jumps off a diving board. (Go figure, the boy who loves the Shock Wave is a teensy bit intimidated by diving boards).

How he still wants me to curl up next to him each night when he goes to sleep.

His complete inability to be mean. He just wouldn't know how. Stubborn, sure. Sneaky, without a doubt. But cruelty is a foreign land to my boy. He wouldn't even be able to understand the emotions behind an act of cruelty. Because my boy, well, he just loves life. Which brings me to what I love most about my boy.

Every morning, he wakes up with the most beautiful smile.

Every single morning.

This child who cannot tell anyone his thoughts, who cannot even tell me if he feels badly, who frequently cannot, due to receptive language delays, even appreciate what his day has in store for him .....

This challenged, beautiful child wakes up with a grin and wraps his arms around me with all his might every single time I wake him up.

What a privilege it is to be the person who gets to wake him up every morning.

November 15, 2009

Walking with Friends

Yesterday, my kids and I participated in our first Walk for Autism event. We walked as part of a team organized by a dear friend.

The walk was only one mile, but I learned that walking a mile with a four-year-old and six-year-old can take a while. My daughter complained about aches in multiple parts of her body: ankles, feet, knees and legs. She even told me she was starting to get a headache and that she needed to take a nap. THAT from a child who hasn't napped in at least two years.

But I was so glad I went.

The friends on our team all wanted to know how I am doing. They wanted to know about my children.

They told me how much they have been praying for me and my kids.

One of my son's former teachers and her boyfriend -- a man I had never before met -- walked right beside me and the kids. They helped me keep my son, who was very excited by the whole event, from straying too far and from leaping into the nearby pond (and, oh, how he wanted to jump right in!). They even carried my children. This man whom I had never even met put my children on his shoulders. He laughed at my son's, uhm, enthusiasm. He spoke in calm, quiet words to them both and walked hand-in-hand with my son on multiple occasions.

I saw so many groups of people walking in matching shirts -- all of them supporting a child who has been affected by autism. They wore shirts with slogans like: Kennedy's Kool Krewe or Henry's Helpers.

I saw brothers and sisters walking hand-in-hand with a sibling affected by autism.

It was a a beautiful sight.

I sometimes feel, especially these days, like my walk through life is mostly uphill. But as I walked yesterday with old friends and new, with strangers who smiled at my children because they know -- they know what it means to truly love a child with autism -- I thought of how thankful I was to know so many people who will help at a moment's notice. Mom and Dad, dear freinds, what would I do with you?

November 13, 2009

Words to Make Me Smile

While driving my darling four-year-old daughter to school this morning, I heard her say,

"Mommy, if you were a cookie, I would eat you."

Not sure where that came from, but it sure brought a smile to my sleep-deprived face.

Oh, thank God for my daughter.

November 6, 2009

One foot after the other

So, in an attempt to remind myself that I am still alive, despite the heartache of the past year, I signed up to run a local half-marathon in December. This will be my second race. My first also was a half-marathon than I ran last December to raise money for the school my son was then attending, a nonprofit inclusion preschool offering ABA therapy for children with autism.

I went for a 5-mile run on Monday. It wasn't TOO bad. I went for another today. Yikes. What happened. I was struggling.

Why is running so gosh darn hard?

Is it the lack of sleep? The poor diet? The wine the night before?

Is it the sadness?

Of course, I always have thought that running, for lack of a better word, sucks. I am not an athlete.

But last year, when I ran on behalf of my children's school, I was surprised at just how fulfilling the experience was for me. I kept thinking of all the wonderful people who donated money. Some of them didn't even know me or my family. It was as if I could feel their support at my back, giving me that little extra push.

And, most of all, I thought of my son.

How in the world could I even consider 13 miles a difficult experience when compared to the daily struggles of a child who cannot talk?

When I stop to consider how frustrating it is for my son to not be able to tell me ANYTHING through speech .... well, I find myself at a loss for words.

But, oh, how he is trying. For the first time in his life, he is trying. Really, actually trying to make sounds in an effort to communicate. And I am starting to hear some words -- little ones, not always so clear. But they are there.

I am so very proud.

So, once again, this year when I run, I will be thinking of my beautiful son.

It will be a symbolic effort on my part -- a sort of "see, my life really does gone on despite all that crap I have had thrown my way lately."

But it also will be a reminder to myself to celebrate each and every step that my son makes on that long, long journey. I do not know where he will wind up. But I know that he is not limited by any predetermined course. His accomplishments have not ended.

They are only beginning.

And I will finish that damn half marathon. Despite all of the wine.

October 31, 2009

Ghosts, Goblins and Sweetness in the Nighttime

A few nights ago, my four-year-old daughter woke up sobbing from a bad dream. She climbed up in bed with me, which is her norm most nights -- bad dream or not.

She said to me, through heart-wrenching sobs, "Mommy, a ghost was trying to get me. A mean, mean, scary ghost. He was trying to EAT MY TOES."

Yikes, that did sound bad.

She went on, "If that ghost eats my toes, I won't be able to walk."

Hard to argue with that.

"And then the ghost was trying to eat my eyes. And if he eats my eyes, I won't be able to see."

The worries keep piling on.

So, I said to her, "Baby, your mommy is strong and tough. And if some ghost or monster ever did try to come into this house, I would TACKLE him to the ground, wrap him up and take him straight to jail."

She looked up at me, with the tears rolling down her cheeks, and after one great big breath said:

"Ohhhhh, THANKS, Mama."

And all was well.

October 28, 2009

What I wouldn't give ....

What I wouldn't give, my little boy, as I lie in the bed next to you waiting for you to drift off to sleep .....

What I wouldn't give, as I keep my arm wrapped around you, knowing that if I move it, you will grab it and put it precisely back the way you want it, with my fingers caressing your shoulder .....

What I wouldn't give, as I hum softly into your ear, keeping tune with the classical music playing from the CD player on your dresser .....

To know what images are floating through your mind.

I press my forehead into yours. Our noses are touching.

And I wonder ...

What is it that you think about as you drift off to sleep?
What is it that you dream about in the middle of the night?
What is it that you want to know when you wake up with that beautiful smile each morning?

Oh, my sweet boy, what I wouldn't give to know.