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

Disconnected

I have been overwhelmed lately. A feeling of disconnection has come over me and I am struggling to make sense of it and to feel connected once again. The irony is that this disconnection evolves from our modern world with its sophisticated and savvy technological advancements that are intended to keep us connected at all times. I have texting on my cellular phone, email retrieval on my I-Pod Touch, voice mail at the home phone, internet on my laptop and wireless throughout the house. So much information is coming at me -- bombarding me at all times reminding me to check my Facebook account or text a fellow mom about coffee or reply to a volunteer email or a beep from my I-Pod alerting me of new email. At times I just want to turn EVERYTHING off and hide. Shut it down. Be free of the constraints of it all. I want to disconnect.

On a much smaller scale, I think it gives me a glimpse of what Sean must feel many times throughout the day -- a lack of connection and belonging -- snowballing into a feeling of isolation and a need to be alone. I think my son isn’t unaware of his feelings or input from the world, but rather, he is overwhelmed and scared from the amount and the constant activity. He wants nothing more than to belong and yet the rules of the game require so much commitment and knowledge that it is just too much for him bear. I guess what I’m trying to say is that it’s not that he is sometimes alone in his own world entirely by choice but maybe more because it’s his only sense of wholeness, it’s a tactic for survival.

My sister said to me the other day on the phone, “Perhaps Sean is a reminder to all of us to slow down, to take a deep breath and to just be.”

I think that’s true. I sometimes find myself wide awake at 3 a.m. torturing myself with all that I haven’t accomplished, deadlines that I have missed and paperwork that remains undone. And then I think about what I am going to do the next day and began to make mental lists in my head, meanwhile robbing myself of any sleep or peace. By morning I am a shadow of the person I need to be and I’m trying to operate in a fog as the demands keep growing. Check the email -- 40 unread messages. Voice mail on home phone hasn’t been checked in days and I can’t even find the cell phone.

Maybe Sean has it right. Maybe he and other children like him are shouting silently to the rest of us to Stop! Take a step back. Give ourselves a fresher perspective. Hold in our hearts the things that really matter (and which are not things). Life shouldn’t feel like a dizzying merry-go-round, our feet kicking up dust and our hands chasing after something to hold onto, to pull us aboard so that we can move in circles. Maybe the secret is only to simply be still and let the world unfold in front of us, to slowly drink it all in and to just be. Maybe the bells and ringtones and alarms are distracting us from what matters, deafening us from hearing the strong, almost silent beat of the heart.

So today I am trying to rise above the noise. Who is to say that this world we live and work so hard in is “normal.” Maybe Sean’s approach is normal and it’s the rest of us that could use some help. Now wouldn’t that be ironic!

Have You Met My Cold Sore Yet?

Last week started out rough. On the heels of the biking meltdown on Sunday, it was followed by a “driving Dad to the airport” nightmarish tantrum. We were happily on our way. Sean had the day off of school and was free to accompany me on the drive. As we drove over the Morrison Bridge, the Willamette River running steadily underneath, Sean realized he had forgotten his DVD player.

“Oh no!” he said, his hands busy looking all over for his bag that held the DVD player, “Where did it go? Oh no, I forgot it! We have to go get it! We have to get it NOW!"

“Sean, we are not turning around to get it. You’ll just have to wait until we get home.” I said firmly, bracing myself for the fallout, my knuckles whitening on the steering wheel.

And then it came -- screaming, tears, kicking the back of my seat, shrieking and mumbling. We were ten minutes into a twenty-five minute ride -- fifty minutes if you count the ride back.

“So much for getting some work phone calls in,” my husband lamented.

One of his employees called and he answered amid the nuclear meltdown and told her he’d have to call her back. Luckily his two employees know the situation and weren't concerned that our son might be on fire in the backseat.

Sean finally calmed down at the airport, his breath still shallow and his face wet with angry tears. We said good-bye to Dad and headed back home. I could feel a migraine starting behind my right eye and thought, “Oh just perfect.”

The next day, Tuesday, I had to drive my older son to his hockey clinic. Since my husband was out of town, I had to bring Sean with me for the thirty minute drive. Five minutes into the drive Sean said in sheer panic, “Where is my DVD player?!”

Oh hell, here we go again. I had put the DVD player in his bag, along with the Finding Nemo DVD he was crying about minutes earlier (“Where is my Finding Nemo DVD!! I am never going to find it!”) I found it and told him to bring it with him to the car. For some reason, unknown to me, he took out the DVD player and carried his bag with only the Finding Nemo DVD.

“WE HAVE TO GO GET IT!” He screamed, my older son covering his ears.

“No, Sean, we are not going back. I told you to make sure you brought it with and you took it out of the bag. God knows why. Besides, you won't even watch the movie anyways.” This was true. Sean's need for the DVD player was not so much associated with him wanting to watch the movie. It was just an unexplainable desire -- a need that he have his DVD player with him regardless if he were to watch a movie or not. And this made the argument that much more illogical and difficult.

The screams, the kicking and now the “getting out of the car seat and trying to sit in Mom’s lap while she drives in the bad traffic” began.

“Sit down!”, I said loudly, trying to push him back into his car seat while steering the car. At a red light the car jumped up and down matched only by the ear splitting screams.


His brother tried to calm him. He made up a story about a DVD player fairy who was at this very minute delivering a new DVD player to our house. This didn't calm him down. He wanted HIS DVD player and he wanted it NOW.

“That’s enough!” I said, “You are going to break the window. Stop right now!"

After about five more minutes he calmed down. We pulled into the parking lot to let out his brother and I let Sean play in the snow piles that were left from the zambonie clearing the ice rink. When both boys were out of the car, I collapsed my face into my palms and had a good hard cry. I was scared and tired and sad and I was at my wit’s end.

I went to check on Charlie and saw a couple other mothers who smiled. I smiled but then felt the tears cluttering in my eyes and hurried out to get Sean. He came sprinting from the snow dunes, smiling and happy. How quickly his mood changed from one moment to another. It was exhausting.

So the next day, Wednesday, I woke with that tingling feeling on my lip -- that dreaded, “make room for a big, ugly cold sore” kinda feeling. And sure enough, by Thursday, it had made it’s entrance, a large, puffy sore on the top left of my lip. No makeup could cover it. Unless I was okay with wearing a fake mustache (I wasn't) there was no hiding this monstrosity.

On Friday I went for a check-up with my doctor. She immediately noticed the cold sore and said,


A cold sore? That's not good. Are you worn out? Are you stressed?” I laughed (because laughter can often mask tremendous sadness.)


“Is there anything you can give me for it?” I asked desperate.

“There is something. It smells like charcoal and it’s supposed to help clear it up a little sooner but I think you should just wait the 7 to 10 days and let it clear up on its own.” She’s a good doc and well aware of my lousy insurance. My guess is that the ointment was spendy and it made more sense to just live with it an extra couple of days.

So, now it is Tuesday. The sore is still here -- lovely as ever. In addition, I also got a painful pimple in the corner of my mouth. And I can’t forget this little bump on my chin that periodically sprouts a wiry blond hair that is as thick as dental floss. I’m calling it my Bermuda triangle.

Getting old is no fun. Having a child with autism has sped up that process. Worry and stress are everyday occurrences in our lives. Some weeks are tougher than others. And last week was a particularly tough one.

Hopefully by next week, the cold sore and pimple will be gone and I’ll have a chance to pull out that whisker (what am I, a cat?) Even when I try to keep the worry and stress inside it has an odd way off getting out, of sharing with the world that sometimes life isn't very pretty.

Sunshine, Biking and Meltdowns

Sunday, the last day of January, the sun hung high and warm in the sky and the mild wind smelled of damp earth and wet grass. Living in the Northwest for the past five years I have learned how critical it is to seize a sunny day. Sun rarely makes much of an appearance during the winter months so when it does make a show it’s “Carpe Diem”.

My older son was tired from an earlier 6:30 a.m. hockey game and bailed on us. Sean had swimming class -- a ½ hour of swimming, floating and kicking -- rewarded by cannonballs and leaps from the diving board -- however, not making much of a dent in his bottomless energy tank. A bike ride? Heck yeah. He ran to put his shoes on and scurried out to the car while my husband loaded up the bikes in the mini-van.

We arrived at the trail, clicked on our incredibly tight and odd feeling helmets and headed out toward the trailhead. What a gorgeous day! The sun melted in the blue sky, cottony almost cartoonish clouds moved lazily resting on the shoulders of budding trees and red cedars and firs. The creek lingered over the pale rocks -- the sun making them sparkle, erasing the grayness and the northwest tree frogs croaked in the wetlands. Sean pedaled furiously, his small strong legs and calves flexing. I could see a smile underneath his helmet, happiness and sunshine making his eyes squint.

I was happy, seeing us together and moving along, soaking in the goodness of it all. Our moods had clearly matched the perfect day. But then it happened. Maybe around the five mile mark -- a mile short of the parked mini-van. The chain on Sean’s bike came off and he came to a stutter and than a complete stall. I called to my husband ahead of us to stop. Sean pushed down his bike angrily and began pacing, each step tighter, firmer and tenser.

My husband turned Sean’s bike over and began working on the chain. It’s an old bike. It was his brother’s bike that we got from a yard sale years ago. The chain was old and rusty. Sean’s pacing turned to muttering. The chain wasn’t cooperating -- stiff and stubborn -- mimicking Sean. Then Sean fell apart. He started hopping and flapping his arms and hitting his helmet.

“I want to go home!” he screamed, drowning out the whimsical music of the frogs, birds and the children at the adjacent park. “NOW!” he screamed.

And then he threw his head back and let out shrilling screams -- like a person being mauled by a cougar or someone falling into a campfire.

"Stop it.” I said firmly and calmly, “It’s not a big deal. Daddy is fixing it. See?”

But he was gone. Lost to any logic or common sense.

"Hurry,” I said to my husband the panic building in my voice, my head throbbing from my tight helmet and the stress of the situation.

My husband had pinched his finger, he was shaking his hand but went back to it steadfastly. Meanwhile, people passed us -- an older woman walking her collie, holding the leash in one hand and a small blue bag of poop in the other. She stared at me hard, gave me an eye roll as if to say, “You are useless.” I didn’t respond. I didn’t engage. I silently laughed to myself and thought -- “At least I don’t have dog crap in my hands.”

Two women power walking came from the other way -- big sunglasses covering their eyes but there mouths formed into horrified arcs -- similar to Munch’s portrait “The Scream”. Again, I said nothing and looked away from them. But inside I was devastated. I couldn’t calm Sean down, he was lost to me -- he was stuck in his world where his bike was broken forever and that he was never going to make it home, EVER. No words no gestures, no simple touch could comfort him. He was unreachable.

His screaming scared me. I was afraid someone would call the police. This is a common fear for parents of autistic children. A person watching from afar, afraid to ask if everything is okay but rather calling the police to report an out of control child or possibly an abusive situation. I have friends who have greeted police officers at their front door -- a complete misunderstanding and yet the pain and humiliation still heartbreaking.

“Just push the bike. What if somebody calls the police on him? On us?” There are houses that back up to the trail -- I was quite certain my son’s meltdown echoed in their yards and homes -- maybe someone thought a child was hurt or being attacked. Who would think that this child was so completely upset and angry and frightened just because the chain fell off his bike? But that was all it was. Welcome to our lives.

Finally, the chain linked on and my husband right-sided the bike. “Come on, Sean,” he said tenderly. My husband is kind and patient -- much more than I am. I had been saying over and over, “Stop it! Calm down. You are overeacting It’s not a big deal.”

My husband smiled at me and said, “It’s okay now.” I tried to smile and managed to eek out a small one -- our secret code that we are in this together.

For once in my life, I didn’t cry in front of strangers who looked at me with such disgust and disappointment. I didn’t mutter out, “He’s autistic. What’s your excuse?” I just let it all go -- for me, for my husband and mostly for Sean. It didn’t matter. Some people will never get it. And some people don't want to get it.

What Sean will have to learn is that the chain comes off a lot in life. Things seem to be going smoothly and then suddenly the chain slips off and no matter how hard he pedals or steers he won‘t be able to move forward. He will have to pull over and take a deep breath and realize that it can be fixed -- with effort and concentration. And then he can get back on his bike and move forward again -- a little wiser and more confident. It’s not the end of the world. Setbacks are temporary and not forever. I just hope someday he will understand that.