Keeping on Track

Sean runs track through Special Olympics. He just started a couple of weeks ago but my husband couldn’t imagine a better fit for a boy bubbling over with energy. The team meets on Sundays at a high school track near our home. We didn’t know what to expect. Sean did soccer through S.O. and we were extremely happy with the outcome.

The first practice was unusually sunny, the grass was bright green cut short in the middle of the track. We decided that Sean would run the 400 and do the long jump. My husband stayed close to keep Sean focused.

They broke up into groups and Sean was paired with Jeff, a man probably in his twenties who had Downs. The buzz about Jeff is that he was clearly the fastest. He had a strong pace and good form and he was proud of his reputation. Sean and Jeff ran a practice run of the 100 and the 200, Sean’s pace strong, keeping in his lane a bit of struggle but full steam ahead. Jeff finished first followed by Sean. He waited for Sean and gave him a high five. I was near the fence waving madly at Sean, clapping and telling him that he did great. Sean gave me a quick smile and looked back at Jeff as Jeff placed his hand on Sean’s shoulder and said kindly,

“Let’s get back over to where the rest of the runners are.” They walked off together.

I wanted to hug Jeff and thank him for taking such tender care of my boy. Would this happen in a typical situation? Would a typical peer put his hand on my son, a gesture of friendship and kindness, or would a typical person not really know what to make of Sean? It didn’t seem to matter to Jeff. Sean was a little kid with fast legs and big eyes and he was looking out for him.

Later my husband and I waited by some benches near the track. A young woman, maybe twenty years old or so came up to us with her hand out and introduced herself,

“Hi, I’m DJ,” her hand searching for mine.

She wore an “Oregon School for the Blind” t-shirt and she had a tick disorder, maybe Tourettes syndrome and possibly had high functioning autism. We talked for a bit. She was going to do the shot put and the 200 -- these were the events that she felt where she excelled. At the end of our conversation she said simply,

“I enjoy enjoying life.”

My husband smiled at her and said, “We should all have that attitude, DJ.”

I couldn’t respond. I was falling through her words, lingering in the peacefulness that she brought to us. She was legally blind, had a constant tick and social impairment issues and yet she took nothing for granted -- the sunshine warming her bare arms, the rush of wind against her skin when she ran and the weight of the shot put in her arms. Life was not going to be wasted on her. She was not going to sit in darkness and loneliness. Absolutely not. She was grateful for the life she had been given as imperfect as it might have seem to others.

Sometimes I think our definition of success is too narrow. We translate success to the houses we build and lavishly decorate, the imported sleek cars we drive, the expensive vacations we take, the country clubs we join and the jewels that hang on our wrists and fingers. In our culture this symbolizes success -- we have arrived. We have made it.

And yet that Sunday, on a high school track field, I saw achievements that are intangible and often forgotten but are so much more important and valuable. I saw a young man take Sean under his wing, his generous feathers protecting and guiding my child. A man who some may feel sorry for or think how lucky they are to not be him never knowing how beautiful and kind he was.

I saw a girl, who many would guess carried the world heavy on her shoulders, but instead walked with the lightness of an angel, spreading her smile like wings and offering up hope and happiness. She said it perfectly, she “enjoyed enjoying life.”

How often do we ask ourselves this --- are we enjoying our lives? Do we work too hard for stuff that we think will make us happy; forgetting to slow down and to spend time searching each other’s hearts where happiness is truly housed.

I learned more from these two people on a Sunday in April then I have learned in a long while. Driving past this track meet, some may laugh at, make fun of, feel pity for or be frightened of my child and the other disabled athletes. But the members of that track team will have the last laugh -- they get it. They know that life is what you make of it regardless of limitations. That life is a present, wrapped and hidden deep in our souls. A present to be opened and cheerished.

Four Days at the Beach

A good friend and fellow writer invited me to getaway for a few days. She had rented a house down in the central coast of Oregon, a stone's throw from the beach. We would make the most of the time, our own little writer’s retreat. It was a trip I was looking forward -- no alarm clocks, no children, no responsibilities -- only my computer, a New Yorker mag, a book I had wanted to start reading, and a couple of rented dvds.

The house sat on a spit, the Pacific coast in front of us and the Alsea river behind us. I remember my first trip to the coast with the kids back in the summer of 2005. I had told a friend that I was going to get up early so I could get to Cannon Beach (north coast) before it got too crowded. She laughed and said,

“Oh, Katie, it’s not the Jersey shore. It never gets too crowded.”

And that is what I love most about the coast -- solitude is ample.

The further south you go on the coast, the less populated it is. There is so much seashore in Oregon -- gorgeous coastline, where often the sea meets the forests -- dramatic cliffs, colossal rocks bearing a pounding from crushing waves and the giant old Douglas firs spilling down the coastal mountain range, punctuated by frothy and fast waterfalls. The first time I ever went to the Oregon coast was in 1991 and it cleanly took my breath away.

We headed down on Thursday after getting our kids off to school. I left the worry and heartache behind me, my husband assuring me that everything would be fine and to go and enjoy the quietness. And that is exactly what we did.

I wrote a few poems and journal entries, went for long strolls on the beach, the weather mild and windy and read out on the deck. At night we talked and watched movies and one morning we managed to get in yoga, my mind restful and no longer knotted in worry.

Below is a poem I wrote at the beach. I tried to capture how I felt being there away from the noise of everyday life.

The Good Darkness

Today the sky is burdened
With thick scarves of battleship gray
The ocean is erratic
Absent of rhythm
And music.
Pounding it’s foamy fists
Against the surf.

Even the seagulls are gone today.
Perched on cedar shingled roofs in town,
Scrounging in the parking lot of Ray’s Groceries
For crumbs.
Or on the rusty high school field bleachers
Foraging for spilled chips and popcorn.

I like it best,
When the coast is readying for a storm.
The scrub pines sway,
The wind tickling their thick fur
Finding tempo and cadence
And even laughter
In the bedlam.

I chip away in this gloomy space,
And discover how good it can feel in darkness.
To move my hips and limbs freely
Without contempt
Or judgment
Safely tucked away in obscurity.

My skin is stretching
Like warm taffy pulled between a child’s fingers.
My soul can no longer be contained.

Delight bursts at the seams --
A tiger swallowtail
With spun silk still wet on her wings
Emerges from a shadowy cocoon
Into startling morning light
To float and drift
Generously
Among the willow and alder trees.

katie donohue April 2010

Flying High

The lobby of the Hilton Waikiki is pristine -- creamy tile, orchids and hibiscus spilling out of pots, palm trees dotting the entrance, and kind faces with colorful leis resting on shoulders and chests. Our seven days of vaction had passed and we were leaving. Night was spilling over the resort, the ocean lit by tiki torches and the stars dazzling above. We waited to collect our luggage from the bellhop as the soft music of ukulele and steel guitar floated in the warm air.

Moments later it was shook up by Sean’s stimming. Hollering, squealing, hopping, clapping and slapping his legs. He was happy and yet the crashing of his body erased the serenity. The bellhops, tourists milling in the lobby, the employees at the front desk and the doormen all stared at him. I could feel the heaviness of eyes on us. Some with wonder, some with irritation, some with surprise and shock and some with pity. We couldn’t move fast enough to get our luggage (Sorry, it must be in the other closet. Just take a minute.)

Sean’s stimming kept building as he looked at his father and me and saw our discomfort and frustration grow. His brother went to him and tried to calm him but he just pulled away hard and began hopping and slapping the tile while squealing in a loud shrill.

“I’m sorry,” I said to the men at the bellhop stand. “He can’t really help it.”

They were kind and smiled, young men who were somewhat mildly entertained at Sean and impressed with is ability to leap so far. I turned away, my cheeks flushed and my nose and throat sweating with tears. The luggage finally showed up and we were hurried off in a taxi.

Once inside the taxi, the tears came. I looked out the window to hide from the kids’ faces but my oldest knew why I was looking away.

“Are you okay, Mom?” he asked sweetly.

“I’m fine, bug. Tired and ready to just get on the plane.”

The rest of the ride he entertained his brother playing an alphabet game. Even the taxi driver marveled at the kind boy who played so nicely with his little brother. He continued occupying Sean while we waited and waited at the airport.

When we came home I reflected on our trip (my first trip to Hawaii). It was a trip that I was completely excited about as I often forget how much work it can be to travel with a child with autism. I did a quick recap. I didn’t want the last memory to take away from the good moments.

Each morning we took turns taking Sean for a walk -- he woke up early and would get loud in the condo.

“You need to walk, Sean?” we’d ask him.

“Yes!” he exclaimed, his need to move and hop hardly contained in his little body.

We walked along the beach, stopped and watched the black footed penguins get fed, looked at the koi in the pond, and the flamingos, their bony legs like sticks, balancing on one foot.

We did so much on the trip, all credit to my husband who did all the research and planning and driving all over the island. We explored gorgeous, desolate beaches with smooth white sand and blue green water. My husband chased Sean out of the truck as he headed straight toward the waves, his arms and legs stretching forward, a smile thick on his lips.

Sean was happiest in the ocean, the pressure of the waves on his body providing great comfort. He wore his tight snorkel mask, his sunburned body floating over coral, watching the zebra fish chase in and out. He was delighted.

He didn’t do well at the resort pools. Too crowded, too much noise. My husband would take him back to the beach and I would stay with my older son who was tired of the sand in his shorts and the salt in his eyes. He was ready to chill in the hot tub or go down the water slides.

I’d be lying if I said there were no tough moments. There always are. Meltdowns, tantrums and stimming are a constant reminder to us that we live with autism. Sometimes we think what it might be like if Sean was neuro-typical. Would are boys be good friends and play together on the beach and at the pool? Could they roam a bit on their own? Would my husband and I be able to have freedom to sleep in and do what we like? Sean is nine years old but requires the supervision and care of a boy much younger in years.

And then I remind myself that it is what it is. I love him. I wish he didn’t have to struggle so much. I wish it could be easier for him, for all of us. But it is what it is.

I love the picture of Sean above. We were near a crowded lagoon and he was becoming increasingly uncomfortable. He began to hop. I snapped a quick photo in the throes of his stimming. But why I love the picture is because if you look closely you can see the world behind him was moving with color and noise, heat and energy and yet you get a still sense of release and freedom from his body and happiness in the movement.

His body is often out of sorts and stimming is the way he regulates. As a parent, stimming is something difficult to manage. I don’t want my boy to hop and squeal, his hands clapping loudly. People see the stimming and don’t get to see the boy inside -- the tender child who knows that he is different but can’t stop himself because when he stims his body feels right and the movement regulates him. This picture reminds me that there are moments during his stimming that are a flash of beauty. In this photo my boy is more than a spectacle -- my boy is soaring, above all the pain and distraction in his world. He soars, his fingers tickling the blue sky.

A Muddy Fine Boy

Last night I heard a knock on the door. I went up to get it and found Sean standing there. He looked like a boy dipped in chocolate -- the white of his eyes life soft marshmallows peering up at me.

“What happened?” I asked, stifling laughter and holding the door close to me, not letting him run through and track wet mud all throughout the house.

“I fell into the water,” he said matter of factly. “I come in?”

“In a sec. Let me start the tub,” I said closing the door, pulling the knob, the hot water and steam pouring out of the tap and grabbing my camera.

Back at the door I asked him to stand still for a picture. He was slightly annoyed but complied and then I stripped off his wet, muddy pants and shoes and guided him toward the tub. The soapy water turned slick and dirty quickly, his body and face streaked with grime.

I shared the pictures with my husband and older son. They had been outside playing lacrosse as Sean hopped around the railroad ties near the shallow creek. Sometimes the creek swells but mostly it’s just a little stream running off from a slightly bigger creek. We laughed at the photos and I felt nostalgic for the old house where I was raised.

When I was growing up our house backed up to a cornfield (rotating crops of corn and soy.) There was a creek, too, filled with tadpoles and insects, a rusty bike and weeds. It was there we would find salamanders and capture them and bring them to keep in the rusty silver milk box in the front of the house. If I close my eyes I can see it all clearly. The muddy path to the creek, the sounds of dirt bikes, like angry wasps, buzzing in the distance and the stalks of corn dwarfing us as the mice scurried in the soil.

When Sean showed up at the front door I thought of my mother who let us run like feral cats in the field -- dirt and mud caked in our hair and fingernails. It took me back and made me thankful for having a mother who gave us freedom and space to grow. We were happiest there, the field stretched like an endless dream, lilac bushes, wild blackberries and the farmer’s crops spilling without corners or edges. And yet the backyard with the concrete patio and scattered baseball gloves and clothesline was always within view.

I helped Sean pick out pajamas, combed out his hair and went to scrubbing the tub, mud and pine needles circling the drain. He was squeaky clean, smelling of soap and apricot oil. He cuddled up in my lap, his arms and legs growing, spilling over me.

I have been struggling with him, our bodies tense and sore from swimming against the current. I’m trying now to let the waves carry me, to stop fighting the pull, to let it just be and see where it might take me and to just be okay with that. I’m realizing that maybe I don’t have as much say in this whole matter as I thought I once had. Now it’s time to stop walking into the wind but to let the wind be on my back instead.

My boy needs me to smile more, to not fight it so hard because he is tired, too. And not to think for one minute that he doesn’t have as much invested in this as I do. He is the one who has to live with it. I have to let him run, too, softening the borders, opening my heart and letting him stumble into the boy he needs to be regardless of how hard this can be to watch sometimes.

On a separate note, I have to give thanks to those who read my writing and who think of Sean and send warmness and goodness our way via kind thoughts and emails. In life it’s not about the square footage of the house or the car we drive or the size of the diamond. It’s really about the people in our lives, the relationships that keep us connected, that buoy us during the storms. It’s the mountains made from comforting shoulders of others who selflessly hold our words with sacredness and grace. And for the moment, that is all I want and need.

Coping and Hoping

We are still in the storm. I am fighting the hopelessness of it all. I had thought by now we might have made it through to the other side -- basking in the sunshine after the long rains. Sean seemed to come out a bit but then tumbled back, taking our hearts with him.

I try to remember how hard it is for him to feel so unrooted and vulnerable. I struggle to keep my own frustration in check and to not add fuel to the existing fire. He is all over the place right now.

“Make better choices,” I tell him, almost pleading after reading a report from school.

“I will be good tomorrow,” he says, the doubt is heavy in his own eyes. “I will,” he says for good measure as if he says it enough it will happen. But then his eyes look scared and he says through a cry, “I am going to be bad tomorrow.”

“No,” I say, “you won’t. You’ll be good. You are good, Sean.”

His eyes lift up a little bit, “Everyone has bad days?” he says, his small voice desperate.

My desperation matches his, “Yes, everyone does.”

“Even you, Mommy?”

“Yes, absolutely Sean. I do have bad days, too.” More than I’d like to have really. Especially lately. I need to remember that he feeds off of my moods sometimes. If I’m feeling down and lost he picks up on it and he becomes harder to access, to get through to.

Lately, I find myself clutching my cell phone, fearful that I’ll leave it behind and will be unavailable for the school if I’m needed. But really, it has always been like this with Sean. When he was three I’d leave him at the little daycare at the fitness center. I’d begin my workout and not too soon after hear my name being paged over the intercom system,

“Katie Bevins please come down to the daycare.”

I’d have to go retrieve him. He’d be in the throws of a tantrum or shrinking in a time-out corner. I thought he’d grow out of it. I couldn’t imagine my life being like that forever. Right?

The cell phone, like the literary albatross around my neck, adrift in the sea, thirsty but surrounded by only salt water. I would become like the Ancient Mariner in the poem, “Water, water everywhere but not a drop to drink.” Argh.

I sometimes wonder if Sean gets better or if we just get better at living with autism. I don’t like to abandon hope, but in stretches like this, I sometimes wonder if I am fooling myself. If I need to keep this idea in my survival pack -- next to my waterproof matches and rain gear and pocket knife. Because without it the days might seem too long and dark.

Good friends remind me that I have been here before and that there is sunshine and hope waiting on the other side. Parents who have children like our son exchange war stories with me, commiserate and reassure us that peacefulness is within grasp.

So for now, I just need to keep swimming. Keep my head and heart strong and hope to feel land on my fingertips soon. He will come back to me. He always does.

Under Construction

While I was driving home from dropping off Sean at school I hit some unexpected traffic. The bright orange cones ahead alerting me to slow down and that the right lane was closing for construction. The sign 200 yards in front of the cone read:

“Roadwork Ahead. Expect Delays.”

The brake lights lit up the early morning, burning through a thin layer of fog and I put on my blinker to merge with traffic.

And then it hit me. You see, it has been a difficult past few weeks with Sean. He has been out of sync lately, making his small body disregulated and his actions completely impulsive. He also has been eating like a horse and sleeping longer than usual. My boy is growing. His brain and body are maturing and changing. His pants, which for most of the year, had been rolled up at the bottom to keep from dragging on the floor now brush above his ankles. His teeth have been falling out like leaves from trees during the fall. And his language has been expanding– more useful sentences being spoken.

There is work going on within my son. And with that progress comes some slow down – some delays. He is so sensitive to change that his body is reacting to it and sometimes the responses are frustrating and disheartening. But in order to smooth out the bumps, to help the traffic in his mind move more evenly and productively, other parts need to shut down and be put on hold. He is trying his best to cope.

So there I sat in traffic, my engine idling, and time ticking away, eating into my plans when I realized that maybe the same is true with Sean. Our life with Sean is dotted with peaks and valleys and right now, we feel like we are nearly crawling, our shoulders and knees pressing into a blinding wind, fighting the exhaustion. And our fear is that we will never be able to get through it and that Sean will remain frozen in the valley, no chance of climbing out, no clear sky above it all just the chaos of wind and dust.

I don’t give up hope though. I have been here before with him. Many sleepless nights and worried thoughts cluttering my mind, difficult conversations with my husband – our fears hung out like wet clothes on a line with no breeze in sight. And yet, slowly, he comes back to us – the tantrums lessening and his conversations more lucid. He is not gone to us forever.

But when he is in the valley, it is lonely for us. We miss his laughter and silliness and feel helpless watching him suffer. We try our best to dig deep down in the well of patience and give him tenderness to rest his tangled thoughts and weary head. As hard as it is for us, it is so much harder for him. We have to remind ourselves of this to keep our energy and love for him constant. If we can’t hold his pain then who will?

He is only a nine-year old boy who sometimes carries the weight of this world sqaurely on his shoulders. He just needs to be assured that it won't be like this forever.

A Winter Poem

I have been working hard in trying to live in the present and not dissect the past or ponder the future of my life. So many people have their lives mapped out -- this is what I will do, when I will do it and when I will move onto the next stage of life. I have never been much of a planner but I wasn't prepared to have a child with a disability.

I had assumed that you marry (for me at 26) four years after that you have your first child and the second one 18 months after the first child. You love them and care for them. Take them to their practices and lessons and save for college.

But in our case, it didn't exactly work out like that. Coming to the realization that there was something amiss with our youngest child triggered the brakes and brought our lives to a screeching halt. We were stuck. What we had taken for granted was not to be. In order to move forward, to get through the day to day, we needed to focus on the present and not get lost in the past (grieving for the baby he once was) nor explore the future (what is going to happen to us?)

I tried to explore this with a poem. I don't know if I succeeded but I felt better after I wrote it.

Winter Sunshine
(nothing is forever)

Frail empty birch tree branches
Cradle a cold February sun

An offering of hope,
Like a warm child
Hugged in tired arms

Days run together too quickly,
My legs are sore from chasing
The day
When he comes back to me.
And he is the boy I once held.
Newborn head nuzzled into my shoulder
Ginger hair like fuzz on my neck
Lips puckering
A guppy
Waiting to be fed.

In my dreams
He comes back,
That baby
With the sleepy eyes
And pale cheeks.

I should’ve held him more,
Lingered in the bliss of not knowing.
But nobody knew.
Nobody.

I am unsteady at the precipice.
The volcano dormant
Calcified in ice
The bottom echoes like a hungry belly
Rocks rattle under my feet
Freefall into blackness.

I know better than this.
I need to turn around
And go back.

I carry clouds like gauze in my fingers,
And walk toward the sun.
To trust it.
To hold it.

To let worry
And heartache
Fall like snow
From overburdened clouds.

To spill over treetops,
And lawns,
Eyelashes
And stoplights.

The sun hangs
Like a Florida orange
Against a backdrop of porcelain blue.

I will peel back the skin
And embrace the fire
If only for a moment
Until it softens
Like butter sizzling in a hot pan
Melting into
Western sky.

katie donohue 2010