Friday, July 31, 2009
We seemed to run free in our neighborhoods. There was no such thing as a “playdate.“ That would have seemed absurd at best. We would play in the corn fields all day. The field mice running quickly near our feet and the flies buzzing against our sunburned faces. We didn’t have sunblock, of course. (Add to that, no hand sanitizer, either.) If it was around it was far too precious to spend money on. The word “proactive” wasn’t part of anyone’s vocabulary. Instead, we had Palmer’s Cocoa Butter or Noxema to slather on our burnt necks and legs. Or cold baths with vinegar. “Reactive” was a word and that’s how most incidents were handled.
My older brothers collected beer cans (can you imagine today, letting your kids collect empty, dirty beer cans and letting them display them pyramid-style in their bedrooms??) and my sister and I would catch salamanders and trap them in the steel milk box. We never went into people’s houses to play -- we played outside mostly, unsupervised. I couldn’t tell you what the inside of our neighbor’s house looked like -- I do know that all of their kids’ birthday parties were done in the garage and the mom used to hand us windmill cookies out of her screened door.
My parents also had a cottage on a small lake in Wisconsin. On the summer weekends we would hustle into the VW bug and head up old Route 12 to the lake. Seven of us piled into a tiny VW bug. My youngest brother and I would call “back back”. It was the tiny boot behind the small backseat -- really in modern terms, a death box. No car seats, no airbags to decapitate the heads of children weighing under eighty pounds, only the sudden rear-end crash that would clearly end us all (at the very least, my brother and me). We squished in the back back, with hardly any room to breathe. the growl of the engine blocking out any dialogue and yet we were delighted. Yet, somehow, we seemed to always remain unscathed. We were a lucky bunch, weren’t we?
It's one of my favorite memories -- the red VW bug, all seven of us squished together, heading to the cottage, a weekend of swimming and playing at the park. Up until Sean's diagnosis, my life has been pretty carefree -- for that I am grateful. When I think of my life before Sean‘s diagnosis I laugh sadly to myself and say “back, back.” During the tough moments, when Sean can't be soothed and we are all exhausted, I wish I could, for the briefest moment, go back back. I want to ride carefree and happy, hot wind knotting my hair, not knowing what is about to crash into me.
Monday, July 27, 2009
I still remember that day. I can still see Sean playing on the floor with stacking rings. I remember seeing my husband reach for my hand but I could hardly feel his, my fingers numb and my palms damp. I knew the words were coming like a commuter knows the time of his morning train. But when it arrived I remember wishing I had put off the appointment, covered my ears or left. It hurt so much more than I had anticipated.
Sean's official diagnosis is PDD-NOS Pervasive Developmental Delay - Not Otherwise Specified. Somehow the NOS part always makes me chuckle. PDD-NOS -- the acronym sounds so definite and exact. The Ah-ha! When the reality is that it's incredibly uncertain and vague. That's the tough part of autism. There's so much ambiguity. The spectrum is large, a vast sea of symptoms and degrees. It's the holding cell where you are initially placed.
I used to think I had much more control over life's outcome. The older I get the more I realize how complex it all is. I've learned to take each day as it comes -- peel off the skin and head in teeth first and eyes shut. In the end, it's all a gamble. There are no guarantees. There are no sure bets in life. I'll take my chances.
Thursday, July 23, 2009
Sean is poetry to me. He is limited in how he can express himself, and yet when he does, sometimes it is the most lovely observation. My favorite is on a rainy fall day when he started sniffing the air, a trained bloodhound it seemed and said simply,
"The clouds smell good. Can you smell the clouds, Mommy?"
On a warm day in June on our way to school he stopped with sudden purpose and said simply, "Smell the sun."
It was the scent of cold damp earth and wet evergreens - it was simply the smell of clouds. I would have never thought that clouds would have a particular scent, but after he said this, I was completely tickled. He also loves the smell of sunshine.
I took a deep inhale and smelled the ripe strawberries in the patch, the bloom of rhododendrons and azaleas, and the musky leaves of the Japanese maple. Where would these all be without the sun's warm caress? This was not lost on Sean.
When Sean dances and spins and hops there is rhythm to his movement, there is poetry echoing in his ears. His smile is large and eyes bright, the look of an old soul surfaces and I wonder if he is much more a part of this world then I and/or others give him credit for.
The first poem I wrote about Sean is one of my favorites. Mostly it is a favorite because it is a reminder of how far he has come. I wrote it in third person because I needed to find safety in distance -- we were new to the diagnosis and unfamiliar with what it would mean to us as a family. At the time, it was too hard to write in first person -- I needed to buffer myself from the sharpness. I sat outside of myself and looked in and this is what I saw and this is what I wished for.
a flightless bird
in a nest of wooden train tracks.
He stops for a moment --
Small fingers curl around a tank engine.
He pulls away from her like
a cheap iron-on
or the peel of an apple
into the sink,
to the drain.
She wishes on
other children’s’ birthday candles,
pollen that she catches
like a whisper
in her fingers
that he will wake with words
wet on his lips
like shiny drops of rain
spilling from his tongue.
She will ask,
"Where have you been, my boy?"
Monday, July 20, 2009
We got a campsite along the Salmon River, an icy tributary of the Sandy that meanders down the mountain, tickling over rocks and fallen trees. Sean knows this spot well. He has camped here almost a dozen nights. He gallops down the trail, over uneven rocks and splashes his feet into the water, throwing his arms back and squealing -- his balance certain.
"Careful," I tell him, in the middle the current runs quick and the rocks get larger, more intense. He puts his arms into the water and then dunks his head -- his red hair slick and dark. This is where Sean is the happiest -- away from asphalt and traffic, people and expectations. There is nothing here except thick firs and cedars, blackberry bushes, lush ferns and the rush of the river, his body keeping time with the rhythm of water.
At night, we sit around the campfire, Sean roasting his marshmallow over the heavy flames, the fire licking his melting glob, turning it to a black bruise. He doesn't mind. His lips and fingers sticky with sweetness and ash. He is delighted.
The sky turned into inky blackness. We could see very little but shadows from the fire and the citronella candle burning on the picnic table. The kids and I made our way into the tent, the mattress slowly depleting of air, a mushy sheet of plastic covered in velour, not protecting us from the rocks and sticks underneath the tent floor. My husband slept in the mini-van -- his hip sore and the sight of the dying mattress completely unappealing. We slept soundly, the river rushing with fury and muscle.
In the morning we drive to Lost Lake, a gorgeous alpine lake, crowned with gigantic firs -- the jewel in the middle -- a perfect view of Mt. Hood. My husband and the kids rent a canoe and I went on a hike around the lake.
What I like most about Mt. Hood is the snow that ices it's edges and points. The glacier is resilient, not giving in to the unrelenting heat from the sun. Never surrender. I wish I could have such perseverance, that I could hang on so tightly, the proverbial David battling Goliath. How does it remain so undisturbed by hot, piercing sunlight? In the valley the weather tops ninety degrees, but the mountain remains frozen like held breath.
When I am tired and feel like giving up, I want to remember that view -- the north side of Mt. Hood -- like rippling muscular shoulders with the brightest white snow -- sturdy and dependable.
Thursday, July 16, 2009
I like the early mornings best. I move like a ghost through the house doing laundry or catching up on reading. I know by 2 p.m. I will have the inevitable crash but for now it is quiet, the morning air cool and first sunlight filtering through the leaves of the Dutch maples.
I wish I could be witty or have something funny to say. I feel like I've been a bit of a "debbie-downer" lately. I will leave with a poem today. Not a "laugh your shorts off" poem (I wish) but one I wrote a while ago when I was struggling to make sense of my situation with Sean. Here it goes -- another untitled poem for Sean.
There was a decisive
You were all of me,
Nestled near a thumping heart
Keeping time with your breaths.
Your body a starfish
Eyelashes wet with tears
And amniotic fluid
A tender foot
Brushing against my ribs.
We sit in separate rooms
No cord to keep us together.
I lost you somewhere between
The delivery room lights and today --
Into swift peaks of salty meringue
An allusion of sweetness
Betrayed in an instant.
Wednesday, July 15, 2009
Now it’s time to take off shoes. No, keep your shirt and shorts on, just your shoes. Don’t cry. Just shoes. Yes, you have to. Get up. Be good. Please cooperate.
Behind me the line grows longer and impatient, sighs from business travelers, constant wrist-watch and blackberry checking. Others give me the stink eye --"Get it together, lady. Who's in charge?" I am so screwed. I try to remain calm. Pulling his shoes off, grabbing his elbow, pulling his shorts back up, shoving him through the x-ray walk through, pushing backpacks and luggage through the x-ray machine and doing my best not to cry -- like a novice waitress carrying a tray of crystal goblets up an uneven staircase, each step away from the crowd a small victory and yet the steps ahead seemingly endless.
And it doesn't end there. It’s onward to the gate area, where crowds are thick with people waiting to board or to change seat assignments. If there’s a magic walkway this means at least twenty minutes of riding it back and forth and back and forth, a pack mule loaded down with the luggage chasing Sean. God forbid the plane hasn’t arrived or the winds pick up, thunder roars and lightening tears up a cloudy sky. Did I mention how screwed I am at this point??
Delays are a cruel joke for anyone but especially for a parent with a disabled child. It means the tunnel stretches further ahead, with no light or end in sight. Take the worst case scenario and make it even uglier.
Once on the plane, Sean becomes more regulated. He sits quietly and looks out the window.
"What does plane start with?" he starts. This usually continues for most of the ride. If I am lucky, I can get him to watch a movie. Occasionally he will stop from watching Spongebob, his eyes growing serious and ask, "Is this show real?"
I look at the screen. Spongebob and Patrick are miles under the sea sitting around a campfire (huh?) and it is snowing (double-huh?).
"No, Sean, it's not real. Spongebob is a cartoon, remember?" I say, my hand on his soft hair. For a moment, I have a glimpse into his world -- a world where a starfish (wearing funky beach shorts) and a sponge (dressed in a tie and pants) are under gallons of ocean water doing the impossible (talking, starting a fire, eating chicken.) I have to remember this - -how he can't always understand the difference between real and pretend. I feel an overwhelming need to protect him -- sometimes his world is a very scary place.
I understand that my child’s autism can make others uncomfortable. I realize that there are those that feel that my child shouldn’t be at airports or other places where he sometimes acts badly. I can’t say that I don’t understand their reactions. There are many places we don’t take Sean due to his autism. Rarely do we take him to restaurants, ballgames, church or shopping malls. He doesn't enjoy the level of activity or noise. It's sensory overload. We do this not only for our sake, but also out of consideration for others.
But I wish people could know that my son is eight years old. He has autism. He is traveling so he can be with his mother, father and brother -- the only three people that matter in his universe. We can’t leave him behind. We are all he has. And we can’t live our lives shut-in, away from everybody and everything. We can’t remain forever suspended in air, a 747 circling the airport, in a holding pattern, waiting eternally. At some point the fuel tank will empty and we won’t last long on fumes. What choice do we have? We’d rather land than crash. Isn’t that true for anyone?
Tuesday, July 14, 2009
Looking back I realize that sometimes we shield ourselves from the information that is plainly there. I'm not sure if this comes from fear or just a mechanism of survival. By the time Sean was three he had been evaluated by an Audiologist, Speech Therapist and an Occupational Therapist. The audiologist ruled out a hearing loss. The two therapists both concluded that Sean was developmentally delayed and had Sensory Integration Dysfunction. Not too long after, it was confirmed that Sean had autism.
Sometimes life takes us on a journey that we weren't expecting. We've packed for the sunshine and the beach and when we arrive it's snow and mountains. Either way, we make adjustments. Looks like no margarita, beach chair and a swim but rather a hot toddy, a pair of skis and fresh powder. What choice do we have but to make the best of it?
Today Sean had his second day of camp. It's a program for disabled children that uses art and music therapy. The people that run this camp ought to be canonized. Saints, really, who have decided what they truly want to do in life is to work with disabled children. We line up to sign in and drop our kids off on a carpet square. Sean is jumping and saying hi to the teachers.
One teacher smiles at me and says, "Boy he sure does have a lot of energy!"
I put his bag into his cubby hole, "I know," I say, "and I swear he's not chugging Red Bulls for breakfast."
We laugh. It is true. Sean is constantly moving -- a blur sometimes. Hopping, running, laughing, climbing and yes, crying. He feels things so much more than me. When he is happy I need a crowbar to pry him off the ceiling. When he is angry I'm ready to assume the tornado position in the hallway. There is not a lot of middle ground -- mostly enormous highs and bottomless lows.
Some of the other children spin and hop, while others sit alone, pulling on a loose thread in the rug or lining up blocks. Others talk while a few have little or no words. Some are more impacted than others. Most of the children are on the Autism Spectrum. There is a child with Downs and a couple other who have chromosomal abnormalities. I am part of this community. As is Sean. I am so happy that Sean is able to carve out a little space in this giant world to laugh and play and be with other children like him. And yet I am sad to think that the rest of the world may not be prepared for my son or my son won't be ready to be part of the bigger world.
As I leave he smiles and waves his hands, his little fingers marked with paint and marker from yesterday. I wave back, "Bye, little man. Be good." He is my little man -- squirming on a carpet square his eyes steeped in mischief. "Be good. And safe."
So today I am using my words -- following the advice that I gave my child so many times. If I don't use my words than I am nothing, but if I do, I am everything. My words are the tiniest bubbles, making their way through the cold waters and popping in sunshine. If I can't find the words than I can't find myself in all of this. I need to use my words.
Monday, July 13, 2009
It hasn't been an easy road but it's certainly been an adventure. I have had way too many sleepless nights and crying jags in grocery stores, airports, post offices, bathroom stalls -- you name it, I've cried there. Today, I don't want to be so overwhelmed by the sadness and the work. I want to be able to laugh, freely, without fear of what's ahead of me. The sad moments are too heavy. I want to explore the happier moments, the funnier moments and the tender moments.
Tender moment today. Sean is stimming in his room. I can hear him clapping and hopping. Occasionally he hollers out "Mommy?" If I don't answer him, I can hear the notch of panic in his voice, "Mommy?!"
"Yes, Sean, I'm in the kitchen."
His pressing question?? "What does January start with?"
"J", I answer. Already today I have answered that question fourteen times. It's stuck in his "loop" (for lack of a better term) and he will probably ask me this another fourteen times before bedtime.
When I open his door, he is sitting cross legged with a marker. He has managed to write squiggles all over his arms, legs and face. "What does June start with?" he says without missing a beat.
"J", I say, "Now hand over the marker."
"What does marker start with?" he says handing me the marker.
"M," I say placing the cap back on.
"M like Mommy," he says pleased to make the connection.
I nod and smile. All roads lead to Mommy in my son's world. I am his GPS who helps navigate him through this tricky world. He needs me. And, frankly, I need him. He is my compass directing me toward what matters -- what really matters.
Maybe not all people will value this little boy who has tatooed his alabaster skin with green marker. I don't know how to teach others to see how valuable he is.
But what I do know is that I don't want to be the mom that everyone feels sorry for. That is not my life. There are terrible days, indeed. But the good days? They are like nothing else. How hard he has to work and how willing he is to make the effort. He has no agenda or hidden motives. He doesn't know how to manipulate. He is a boy. A lovely boy. M is for Mommy.
M is for Mommy.