Tuesday, January 26, 2010

Don't Worry, Be Happy.

Sean started a gymnastics program. He won’t let his brother or me come watch him yet. Only Daddy. He has a lesson every Friday for forty-five minutes. My husband told me he is good. It’s no surprise. Sean has some big deficits but on the flipside he has some great strengths. One is Sean’s agility, strength and power. He is small but he is mighty.

A year ago, I stumbled across gymnastics rings at Ikea. I bought them and had them installed in the basement ceiling. Sean loves the rings and plays on them daily. He is magical on them -- his muscles bubbling and his laughter echoing as he swings and climbs and knots his arms and legs together. -- a mini Cirque-de-Soleil performance. He spins through space, the basement air turning windy against his ears.

When my kids were small and the diagnosis “autism” was not part of our lexicon, I had let myself dream of what my boys might become -- what they would make of themselves. But after living more of this life, I have come to let go of those ideas and wonders. Because in the end, what we want most for our children, is to see them happy and peaceful.

When I would observe Sean in occupational therapy or social skills groups I would watch him through eyes of a therapist -- clinical and observant. Is he being appropriate? Is he responding? Is he regulated? It was exhausting, really. Forty-five minutes of running and swinging and throwing bean bags and I’d be rushing through a checklists in my mind. Had I forgotten to see the little boy’s tender smile, his lips peel into laughter, his eyes shining with excitement or was I too busy looking for clinical and critical responses, forgetting that sometimes the most important thing we fail to notice is subtle delight glowing in our children’s faces.

Some days I just want to see my child content. That’s all. I don’t want to analyze or discuss or interpret. I just want to see him joyful and see it for what it is. Nothing further. I don’t want him to feel the pressure either -- to see me in the corner sitting in a folding chair, arms crossed and face edged in worry. I want him to know that he is loved for the boy he is -- not the boy that he is “supposed” to be or should have been “if not for the autism“. I want him the way he is, spinning in his rings, his delicate, pale eyelids shut tight, and his beautiful smile spreading softly like angel wings.

Sean has autism. It is not who he is. He is a boy first. My boy who works so incredibly hard to feel a part of this difficult world-- to somehow fit in. And hard work shouldn’t go unnoticed.

Tuesday, January 19, 2010

Skydiving and Petting Cows

The boys and I were hanging out in Sean’s room, winding down from the day. Sean was getting into his covers and his brother was sitting at the end of his bed. I turned off the lights to get Sean ready for bed and he said sweetly,

“Can you talk to me, Mommy?”

I sat down on his bed, the room dark, and he said quietly,

“Sometimes I have good dreams.”

“You do?” I said, surprised. Most of the times, when I ask him what he dreams of he says quickly, “Nothing.”

“Yes,” he whispers.

His older brother, curious asked, “What do you dream about, Sean?”

He pulled the covers over his face and said happily, “Farms. And petting cows. And sometimes I am skydiving.”

His older brother laughed kindly and said,

“Yes, Sean. Sometimes I dream that I can fly, too. It’s so awesome. Maybe you’ll have a dream that you are skydiving and you land in a barn and you can pet the cows.”

“I love petting the cows in my dreams,” he said, his voice softened with the memory of his dream.

His brother said, “Yeah, I love the good dreams. I don’t like the bad ones. Sometimes I dream that someone is chasing me and I can’t scream for help. And one time I dreamt that a bad man took Sean and I couldn’t stop him and he took Sean away from me.” his voice scared.

Sean said, “I have bad dreams about zombies.” his voice shaky. “I don’t like those dreams.”

I smoothed his hair and kissed him on the forehead. My poor little guy is like me -- frightening images are tattooed in his mind, constantly interrupting thoughts. When I was a little girl I was so afraid of the movie Cybil. I covered my eyes but couldn’t get the horrible mother’s voice out of my head and the little girl’s fearful voice. I still can’t watch that movie.

“No bad dreams tonight, pumpkin. Think of skydiving. Dream of the cows.”

I stood up and took his brother to his room, his hockey posters and medals hanging on his walls. I pulled back his NFL covers and tucked him in.

“What are your good dreams, Mom?” he asks, burrowing his body into the covers.

Do I dare tell hin that everyday I dream that Sean will come to me, with promise and hope in his eyes, words like honey dripping from his lips, his conversations on-topic and his body free of the impulses and hopping and the strange noises that he sometimes makes. That he will be the boy I have always dreamed of -- a boy who can run and play easily with others, who can read books and comics, who doesn’t cry or scream when things don’t go his way and who can live in a world that doesn’t feel like it is swallowing him whole.

But I don’t. I tell him that my favorite dream is that I am flying, my arms stretched, scraping clouds and blue sky with my fingers, looking down over green hills and pastures of wheat below, and my heart beating electric.

And I don’t share with him the nightmares I have had either. The one where he and I are playing with Sean near a river, the water clear, cold and rushing with purpose. I look away for the briefest moment and when I turn back, Sean is falling into the river, his body disappearing, the river water turning muddy, almost black. I frantically reach my hands, my arms into the freezing water, searching for his little fingers, a shoulder, a hand but pull out only smooth rock and silt. I yell at my oldest to help me, his small arms, shaking and panicked, hot tears on his cheeks and his hands surface with nothing, nothing but river water and sticks and pebbles.. And I cry, my fingernails digging into the earthy riverbed and yell until I am sitting up in my bed, a scream caught in my throat, my armpits damp and I finally wake. It’s not real. He is sleeping soundly in his bed. It is not real. I haven’t lost him.

But I cry anyways because this nightmare (and I have had it several times) seems too real to me. And because the metaphor of this dream, that I’m losing my child to autism, haunts me, not only during the daytime, during the tough moments, but also the fear stays with me at nighttime, penetrates my sleep and plays itself out in my dreams. Sometimes this dream takes place at the ocean or a swimming pool, but it always ends the same, my oldest son and I are crying and searching for the little boy who has been stolen away from us, trying to touch his skin, hear his voice, trying so hard to keep him with us, in our arms, our relieved sighs against his sweet red hair.

I don‘t share this with my oldest. I am sad that he is even in this terrible dream, that he is standing next to me, frightened, doing his best to save his brother, doing all that he can to save me from such despair and not being able to do so.

Then I am reminded that my favorite dream is realized. It’s the luck of a good husband, of two little boys who teach us everyday that all we can do is just love them simply and kindly. So I try to push the bad dream out and I try to replace it with the one where my beautiful boy is laying in the hay, the sun warming his shoulders, his cheeks and he is with the beloved cows, petting their soft coats. He is happy and he is laughing and he is safe. Yes, he is safe. And yes, he has dreams. My boy dreams.

Monday, January 11, 2010

A New Year

Lately I can’t sleep. I can fall asleep but I can’t stay asleep. Around 4 a.m. my eyelids peel open like shades snapping against the tops of windows. Hello world, it’s me and I’m wide awake. But it is January in Portland, and the darkness is inky blank, my own fingers invisible in front of my eyes.

This time of year is tough. Not only because January always seems a cloudy hangover from the holiday celebrations of December, but also because January marks the start of a new year, a time to reflect on the past year and take inventory, another tally mark -- my life getting shorter and my children growing older.

Sean’s birthday is also in January -- a bittersweet reminder that time marches on even if my child’s development continues to lag behind. Of course a child’s birthday is a happy occasion for any parent, that is any parent with a typically developing, healthy child. Another birthday for Sean can sometimes be a lonely reminder that progress is slow, painful and often times below eager expectations. It’s as if I’m losing valuable time -- as if my boy is falling further behind me -- no longer within my grasp.

I have to constantly remind myself to live in the present. The future, like the past, is equally if not more so, painful to ponder. To go there is to go to a dark swimming hole, the water freezing and murky, my skin prickling from just a touch, but knowing I have to build the strength to plunge in, to tread, to keep my head up above the choppy water, because if I can’t, who will?

Sean’s birthday came and went, complete with frosted cupcakes and balloons and presents. He is nine years old. Wow. Last night he came into our bed around 3 a..m. -- his musclely, taut arms and legs wrapped tightly in thermal long johns like sausages. He flung a leg over me and an arm over his father’s shoulder. I reached for his face, cheeks, and touched them sweetly and then I buried my lips into his messy ginger red hair, breathing him in and my tears dampened his bangs.

It is the time of night that I am wide awake with my thoughts, my worries. There he was, sleeping, his breath almost a snore and I let myself remember when he was a perfect, sleeping baby. Where did the time go?

I wish I had the energy or maybe it is the hope to dream on the cusp of a new decade. The last decade was full of movement, of highs and lows -- of babies growing stronger, taller to little boys -- of a diagnosis that not only changed my son but changed us all. We are much more tentative. We balance hope and reality delicately -- holding on to a better tomorrow and yet trying to keep our hearts whole.

Happy Birthday, Sean. I’ve made my wish and now it’s time for you to make a wish.