Febru-DREARY Finally Over

The last month, even with only twenty eight days, can sometimes feel like the longest, most tedious month. We battled rain, a soaking downpour for days on end, leaving my hair frizzy and fingers like prunes. And with the rain comes the isolation. The ground muddy and completely soaked with puddles like small lakes spreading around us, trapping us indoors.

I complained about the weather in my writing class. A fellow student reminded me that the rainy winters are what keep the population at one million and not seven million. The summers are incredible, blue skies and sunshine, mountains in the distance but first we must suffer through a long, wet winter.

I often wonder if the lack of sunshine makes Sean harder to handle. He doesn’t have the opportunity to run and climb trees and ride his bike. He plays on his gymnastics rings, hops up and down the stairs and rolls on his giant exercise ball. He is often edgier and stims more. And I am in not in a good mood either – sore throat, congestion, headache and cabin fever-y. I find myself being short with him when he begins his list of questions over and over:

“There is no such thing as a talking door house?”

“Why did Dad clap at the hockey game?”

“How do you spell Wiggles?”

“Everyone has bad days?”

And I respond quickly:

“No such thing as a talking door house. That’s on the Wiggles and it’s a TV show.”

“Dad was excited and happy that his team was winning.”

“W-I-G-G-L-E-S”

The last question always gets to me because there seems to be a certain unreachable sadness in his voice and loneliness in his eyes.

“We all have bad days, Sean. We have to work hard to have more good days.”

Sean struggles to have good days. He’s had a couple in a row but then the pressure gets to him and the note comes home saying that he had to cool down in the quiet room or cried and threw a tantrum outside at recess.

“Kids bump into me. They throw the balls in the wood chips.” He says this over and over when I ask him about recess. The children are playing games of tag and wall-ball, and Sean feels as if he is being swallowed whole by the ground, squeals and laughter from children startle him, his heart racing and his hands clammy with sweat.

I try to explain that the kids are playing and that they are not intentionally trying to stress him out but he has little understanding. He repeats back to me what I say in question form.

“It’s not on purpose? It’s only an accident? Don’t get angry?”

I hope Sean can, at some point, feel somewhat in sync with the other children or at the very least find better coping skills and understand social situations better. For now though we take it day by day and try to chart some kind of progress.

The truth is we are crowded in the house, the windows streaked with rain and pine needles, the gutters clogged with mossy leaves. The schoolchildren are crowded, too, trying to carve out some space to join in on some fun underneath the covered play area. And we are all just trying to get along and to get through it without losing our patience and wits. At least it’s March – we are a little closer to sunshine.

Trying To Find A Spring In My Step

I took the dog for a walk this morning. The weather was dull - A slight drizzle and the sky quilted gray but the air temperature warming. I was searching for signs of spring, tired from the confinement of winter.

As my feet sloshed along I saw signs. Crocus and tulips trying to muscle their way through the cold and damp ground, the trees budding with silver fuzz ribboning around branches and the smell of earth and mud warming and mingling with the wet sky. I tried to take it all in and let it thaw my tired joints and aching heart.

My dad called and asked how Sean is doing. I really don't want to talk about it. I'm not even sure why. I just say the same thing that I say to anyone that asks me, "He's okay. Some good moments and some not so good moments." I just don't want to get into it all. I am tired. I feel bleak. I am finding it hard to hold onto hope and the winter gives me little purpose or reason to do so.

I need sunshine. I need to see the mountains to the east, the strong shoulders of rock and earth scraping a blue sky. The weather echoes my own feelings, gray and lost and murky.

Sean is trying hard to maintain his moods. It's as if his moods are carnival roller coaster rides, highs and lows, fast and sudden stops -- moments that can be thrilling and moments that can be frightening. It's a lot for a ten year old boy.

I'll leave on a good moment. The morning time. Sean creeps into our room, his hair cut short and ruffled on top. His face is more boyish, his cheeks ruddy and his smile is large and messy with teeth missing and teeth growing partly in.

"Hi Mommy," he says crawling next to me, his skin smells like apricot oil and his hair is soft on my chin. I squeeze him, hold him tight and kiss his messy hair. He is my valentine this morning. A sweet boy filled with love and a need to belong and I am the lucky one to find him first.

Winter Blues And Some Good News

January is a tough month. It feels like 31 days of a nasty holiday hangover. Each day I promise to write something, anything and each day I end up curled on the heater vent reading magazines or trying to engage in some sort of acceptable meditation or come up with some excuse for lying perfectly still while the hot forced air dries out my skin.

I suppose I am like this every winter. I hear it in my mother’s voice as we commiserate over the phone. Where she is it’s below zero, the sun’s muscle powerless in the frigid air and where I am is socked in with fog and rain, the gutters spill like waterfalls onto the soaked lawn.

We did travel in search of sun -- to Sun Valley, Idaho, the sky an unreal crayola blue against the crisp white Sawtooth range and the sun blaring over the peaks -- eerily similar to a child’s drawing proudly hung up on a refrigerator door.

Sean is becoming quite a skier. My husband, with the patience of Job, taught him to ski four years ago and taught him well. It did not come easily. Any mere mortal would have thrown in the towel on the first day. I can still clearly remember one incident (of many) when Sean took a terrible spill and screamed and tantrumed, hit and scratched my husband ran in circles and rolled in the snow. My older son and I watched the whole ugly scene unfold from above in a chairlift.

“Sean!” my oldest yelled down to the bundled up boy moving as if his body was exploding in flames, “You like the chairlift?”

Sean became still for a moment, then his head darted about to find the voice and then he spotted us up above, his cheeks still visibly red from his tantrum and from burying his face into the icy snow. The idea of being lifted through the new night sky on a chairlift, his body sifting through starlight, was the redirection he needed and he trudged over to my husband demanding another ride, getting back into his bindings and pushing his hands into his mittens. The neurological storm had cooled. He was ready to go again and my husband, seemingly unaffected by it all, was ready to take him for another run.

You can anticipate at least two or three horrible meltdowns with Sean each day of skiing. A wipe-out will always precipitate one. If somebody skis to close to him is another. And then there are the unexplained, the ones that come out of nowhere, the meltdowns that usually start with something so illogical (“Why don’t I have a W in my name?” or “Sam didn’t mean to clap?”) that you just have to hold on tight and hope that it lifts as quickly as it has landed.

Sometimes a plate of French fries will distract him. Or hopping into the snow drifts with his heavy ski boots. It’s usually hunger or his body out of sorts, tumbling away from him and making him disregulated. And sometimes, we take turns walking him to the car – his hot tears and screams drawing stares and comments. On the worst days, we call it a day and hope that the skiing will prove to work as some type of exposure therapy.

But I have to say, I am wildly proud of my little guy. And of my husband. He believes in Sean in a way that I don’t know if I can. He could care less what people think of his boy because he knows what a trooper Sean is. He sees a skier in our son -- a thrill seeker. He sees a child that can do anything if only he sets his mind to. In this new year, I want to be more like that -- I want to hope and I want to believe that Sean can do anything he so desires. Why not?

Another Birthday...

Sean turned ten. I can hardly imagine that he is in the double digits. A decade. Wow.

My husband and I were not looking forward to the milestone. We wanted to keep him nine for another year, give him time to possibly catch up to his age. He is nowhere near a typical ten year old. Not even close to a nine year old. And watching him become a year older can sometimes be a painful reminder of how far behind he is and how much work he needs to make up in order to someday catch up.

In the years past we tried to have birthday parties and find the “one” gift that would truly amaze and transform him. The parties always ended up with Sean being too overwhelmed and the gifts were tossed aside and disregarded. Let’s face it; he was just trying to keep it together in what he perceived as complete chaos, utter mayhem.

So this year we invited good friends over that know Sean. A husband and wife and their two children who Sean counts as two of his “best friends”. She asked what she could get Sean and I told her,

“Nothing really. He doesn’t get the whole present idea and he really doesn’t play with any toy in particular.”

When I asked Sean what he wanted for his birthday he said,

“A gosling.”

At first, I imagined that reality star woman Kate Gosselin and her brood of children and thought,

“Well, it’s a sacrifice and she seems like she could be a lot of drama and be totally high maintenance, but maybe I can pull it off. It would be a lot more kids to house, though.”

“Or maybe a guinea pig.”

He followed with, and the image of the “always reinventing herself” Kate Gosselin vanished into a picture of a fluffy baby bird and a rolly polly giant hamster. I don’t know which image seemed more realistic. Sean is not very good with the cat and dog. We had a fish that Sean took out of the bowl in order to “take for a walk”. Luckily I got the fish back into the water but that one could have ended badly.

What we decided to do was have pizza and cake and I shopped at the Plaid Pantry for the birthday loot. My husband reminded me of what Sean really wanted – Root beer, Ritz crackers, a Pop Tart and Reese’s Peanut Butter Cups – essentially a hillbilly survivor kit. These items have had to be ruled out for Sean – to him these over-processed, dyed-added, corn syrupy delights are like crack to a crack head. He can’t stop at one Ritz. Nor could he ever just have a “sip” of root beer. We don’t even keep ketchup in the house because Sean will guzzle it down like water. My older son wanted to see if we could do a successful intervention on the ketchup alone…

“Sean we love you and we are afraid we are losing you to ketchup…”

Weirder things have come out of our mouths.

And my friend ended up buying Sean a couple of books and two Butterfingers. He threw the books aside with one hand and tried to peel off the wrapper and bite into the candy bar with the other. He followed it by a guzzle of root beer. We put the candy in the freezer and told him he could have a Pop Tart (his form of black tar heroin) in the morning. We hid the crackers and emptied the rest of the root beer down the drain after he made a pretty good dent and had forgotten about it. Luckily the” out of sight out of mind” trick works for Sean.

It was the first birthday in recent years that I didn’t watch Sean sit in a crowd of kids, tear into a set of “Read Along Books” and a Soccer ball and watch them get hopelessly flung to the side while his eyes were steeped in terror and worry. I didn’t pin my hopes and dreams on this birthday – it had been ten years since I went into the hospital – the snow falling from the sky like loose feathers from a tear in a pillow case and the streets growing thick with ice. Ten years since he was placed in my arms and a silent promise was made to just simply take care of him, to love him, no matter what.

A Wish for 2011

It has been ten Christmases. Almost ten New Years. You were born in January of 2001 and it is hard to imagine that it is almost 2011. I miss the boy I thought you were going to be. The handsome red head with broad shoulders and laughter. Someday you would break your mother’s heart as you grew up and grew away. I would pine for the soft baby I held in my arms, with eyes fixed on me like milky green-blue marbles and pink, perfect lips. You would grow older and wiser and leave me empty and alone.

But it has been ten Christmases. And almost ten New Years. And you are still a little boy, soft and tender. I have had to let go of the boy you were supposed to be – a heart throb and charmer and remain in love with the boy you are, frozen and still, a five year old trapped in all the makings of a ten year old.

I watch other children watch you in wonder and amusement, your body hopping and snapping like a muscle spasm in a giant’s thigh. I want to protect you and cover their eyes and tell them they don’t know the mighty heart that beats within the walls of your small chest -- a boy who, to know fault of his own, lost pieces of himself, as easily as gritty sand falls through fingers on an ordinary day at the beach. You were somebody one minute and somebody else another.

I loved you from the moment you were born, a twisting, wet seal pup on a scale with a flash of red hair and a determined holler. You were a piece of me, ordered up at a deli counter to be weighed and wrapped and snuggled in my arms, newspaper print leeching onto my fingers, tattooing your story forever on my palms.

If I could make you whole I would. I watch you struggle and cry and I stand helplessly – no parent should go through that. I wish a mother’s love could mend the cracks and repair the seams and keep you whole once more. I can’t help but feel that I have let you down, somewhere along the way and for that I will always feel the rugged braid of scar tissue that interrupts the smoothness of my heart.

But who is to say that it is all final, that you won’t rise like the stealthy Phoenix from gray ashes and shake off the blinding dust. That you might soar once more, your heart and soul scraping against the belly of the sun. It’s the least you deserve, little one, for the frightening and dark world that you have grown to know. Let this new year offer you more hope and opportunity to feel more akin to those who love you and live in this world. Let this new year welcome you home to the arms of those who never tire, waiting patiently for your return.

Band of Mothers

Tonight I went to my oldest son’s holiday performance at the school he attends. The bleachers were pulled out and folding chairs were lined up and down the fading, scuffed gym court. There were performance by violinists, a jazz band, a choir and a singing group. All the oldies and goodies and some old songs with a new twist. I arrived with Sean in tow, my husband travelling for business and no kid sitter available.

Sean was antsy from the start. He needed to go to the bathroom but wouldn’t because the school was too crowded. He pulled and yelled at me and I tried to manage him in an ocean of unfamiliar faces. My nerves buzzed like angry wasps circling a nest and I felt myself perspire under my arms and on my neck. I wrestled him into the gym and found a spot on the bleachers next to the exit. I took off his jacket and put on his headphones to help muffle out some of the noise of the crowd settling into the gym. I could feel the sting of tears burn in the backs of my eye sockets, swallowing hard and trying to breathe my way around the curb of pain that parked in my throat.

He stood up suddenly with his arms opened and said my neighbor’s name softly. I saw her walk up and hug him, his body softening and the edginess fading. He told her he wanted to hop and she asked if it would it be okay to take him for a little walk. I said of course and quickly handed Sean off to her realizing that what she offered to do was quite a favor considering Sean’s uneasiness with the crowd and the difficulties that come with managing an autistic child in a nightmarish situation.

As they left I thought, “What am I thinking? Why did I just pawn Sean off on her like that? That wasn’t very nice of me to do that.”

She came to watch her daughter but instead she was throwing a line into the swell that had gathered around me and she kept me from drowning. A few minutes later she came back with Sean, his hands wrapped in hers and all of his tenderness leaning into her. He was so thrilled to see her there (and so was I).

Shortly after, one of my very closest friends walked up and Sean hugged her too. Another remarkable soul telling me that she could take my oldest home (completely out of her way) if it was too much for Sean. I felt the stress slowly lift with the steaminess of the gym air and felt my heart rate slow down to a more reasonable pace – thankful for the comfort of friends.

We watched the kids sing and dance and I thought how fun it was for my oldest and then I became a bit sad for Sean realizing that he wouldn’t have the same experience. Without the kindness and regulation of my neighbor’s arms around Sean I don’t think he would have even stayed to watch. She kept him in his skin and allowed me to see my oldest perform. I watched Sean watch the older kids, his red hair ruffled by his headphones, his cheeks ruddy and his eyes clear and polished. And I did feel a pinch in my heart - -another rite of passage that he most likely wouldn’t take part in – the idea of a crowd of such size in a packed gymnasium with drums and trumpets and sweetly high-pitched adolescent voices – the stimuli too great for my youngest to ever endure. He would most likely never be a boy in black slacks and a matching shirt swaying and singing with all his heart on a stage with friends. This is one of those moments that I probably took for granted when having children and the reality of the difficulties that my son will face throughout his lifetime leaves me at a loss for any useful words.

He lasted the whole hour and some minutes, much thanks to my neighbor who held him closely and rubbed his back. He was excited to see her daughter who gave him a high five and a warm smile. I couldn’t help think how five years ago, when we moved next to this family, I had no idea how much their friendship and support would mean to us – how much we would come to rely on the goodness of their hearts.

And I am reminded of my dear friend who gave Sean a hug and me a “get out of Jail” free card; who four years ago came up to me after Sean kicked me and yelled at me in front of a crowd at my oldest son’s soccer game and put her arm around me and just walked with me while I cried out of embarrassment and shame. I had only met her once before when our boys got together to play. She rose from a crowd of people that didn’t quite know what to make of the scene unfolding near the swings and with such tender compassion and courage saved me from public heartbreak and gave me a soft place to hang my head and cry.

I am amazed at how the people that mean the most to me in my life are people that I have connected with through Sean. That somehow he is my beacon, a sweeping light in a sea of darkness bringing into focus all the details of survival and constantly reminding me that all we really have in the end is each other and our innate ability to help when we see panicked arms hit the air. That without this little boy in my life I might not know such truth and beauty and strength in people and what a privilege that truly is.

As a teacher reminded me in class the other day -- stars are out all day long but it takes darkness to actually see them. That we are able to see the moon so well in the winter because the trees have lost their shaggy coats and offer up more space between their naked arms. And that without Sean and the chaos that often comes with his disability, I wouldn’t recognize such incredible peace and deep friendship so readily. He is a blessing. I have to remind myself of that, particularly during the dark days, he is a blessing, a torpedo of silver lighting up even the gloomiest night.

A Lucky Mistake

Yesterday I had a calendar mix-up. I looked at an appointment card I had and it said Monday, 12/1 10 a.m. Problem was that it was Monday but the date was 11/29. So which was right – was it indeed Monday or was the appointment Wednesday, 12/1? I called but only got voice mail. I decided it was best to drive there to just be safe. My schedule was sorta flexible and a fifteen minute drive to the east side wouldn’t be too disruptive.

As I drove across the Morrison Bridge to the east, I saw Mount Hood glowing like a polished trophy, cast in shadows of blushing silver. To the north, Mt. Saint Helens popped like a dreamy bundt cake swirled with velvety white frosting. I felt my heart bump against my chest. How lucky I was to see this. Usually late November means that we are socked in with heavy gray clouds, smudged fog and the mountains seem lost to us until late spring. But not this day and I was surprised and happy to be able to catch this seldom seen glimpse. I felt lucky. Like this was a good omen.

At the same time I was listening to a song that I was really enjoying. When the mountains came into my view the words, “I am not the mistakes I carry. I am who I am” sang out from the speakers. It was a strange and serendipitous moment for me. I felt tears in my eyes and my fingers clenched the steering wheel. I have been trudging along these days, feeling overwhelmed and hurried through the holiday madness, watching the slippery sand free-fall through the timer and feeling panicked. And yet, in that moment, time stood still, worries melted and I felt real joy. As if something greater than my small life was saying,

“Slow down. Hang on. Look East. Look North. Listen to the words. There is greatness and beauty in your life and you are not your failures.”

I felt a stirring in my bones, maybe in my soul that this was a moment to be had, an instant to take pause and breathe – to bask in the undisturbed peace that exists in the natural world and to let all the synthetic noise and clatter of the holidays fall silent.

Sometimes I think I might be losing my mind. I am always trying to make sense out of this life of mine. Why things are the way they are. And I can’t help but to trust that grace and beauty and hope are within the distance of my tired, wrinkled fingers. That I can feel them like I can feel my boys heartbeats when they fall fast asleep in my arms.

And I don’t know what that “true” meaning holds for me. I do know that it has something to do with my children, especially Sean. As much as it has been a rough road with Sean, it has been one that has stretched my mind and heart like pulled taffy. He continues to shake me out of my comfort zone of a one dimensional life and pushes me into an ocean of tumble and salt and wonder. I don’t know if I would be as happy and fulfilled as I am with him as I would be without him. That means something, when I consider all the heartache and break we have had raising an autistic child. He is the sweet and sour in our lives. He makes the good days better because we have lived through the rough days and have crawled out on skinned knees and hearts.

When I arrived at the office I was told my appointment was indeed, Wednesday and not Monday. I didn’t mind though. I wasted “valuable” time but what I saw and what crept into my mind and heart was worth it. If I didn’t check on the appointment I wouldn’t have travelled in that direction, to the forgiving east and the vast north, and I wouldn’t have seen the muscle of mountains and shimmering sunlight tickling the horizon. I wouldn’t have heard the song that told me to let go of my mistakes, that they are not who I am but rather a small part of my history. I wouldn’t remember how lucky I am to have all that I have. I am lucky. Despite what others may think of a mother with an autistic child. I am one lucky person.