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?

A Break in the Clouds

There seems to be some room for sunshine lately -- both figuratively and literally. The heavy rains of April and May have lightened up, turning everything a dreamy green and making the roses pop with rich reds and creamy yellows. The dogwood, lilac and magnolias are heavy with flowers, spilling over fences, tumbling down branches.

And Sean has gotten better, too. His meltdowns riddled with anxiety have lessened and he is sleeping more, pillow scooped in arms, covers kicked to the floor, breathing steadily in and out.

I’m afraid to talk too much about it. Afraid that I will jinx it and Sean will fall back into the hour long crying jags or inconsolable meltdowns or the anxiety that keeps him imprisoned. But it has been ten days now of a happier child.

I am not only happy for us -- my husband, older son and me but I am happy for Sean. He was struggling so hard in thick of it. The littlest noise or sudden surprise or unhappy moment would send him into a tailspin. He doesn’t want to be like that. No child wants to feel like that. And all we could do is survive. Keep our patience and strength and love for him constant, even during the days when it felt like we could give no more.

The notes from school have gotten better, too. He’s not perfect but he is doing better. And for now, we have to accept that and remember how much better it is this week than a week and a half ago.

It’s also a reminder that we take this life one day at a time. We vow to experience it, under no set conditions, and we trust that we will do our best to make the most of it. A child like Sean reminds me everyday of this -- to take each day generously, to hold onto it in my heart and to always hope for sunshine, even a peek during the cloudiest days. And if the sun doesn’t budge behind a curtain of clouds then let me remember to bring my umbrella in case it pours!

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.