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.

Don't Worry, Be Happy.

Sean started a gymnastics program. He won’t let his brother or me come watch him yet. Only Daddy. He has a lesson every Friday for forty-five minutes. My husband told me he is good. It’s no surprise. Sean has some big deficits but on the flipside he has some great strengths. One is Sean’s agility, strength and power. He is small but he is mighty.

A year ago, I stumbled across gymnastics rings at Ikea. I bought them and had them installed in the basement ceiling. Sean loves the rings and plays on them daily. He is magical on them -- his muscles bubbling and his laughter echoing as he swings and climbs and knots his arms and legs together. -- a mini Cirque-de-Soleil performance. He spins through space, the basement air turning windy against his ears.

When my kids were small and the diagnosis “autism” was not part of our lexicon, I had let myself dream of what my boys might become -- what they would make of themselves. But after living more of this life, I have come to let go of those ideas and wonders. Because in the end, what we want most for our children, is to see them happy and peaceful.

When I would observe Sean in occupational therapy or social skills groups I would watch him through eyes of a therapist -- clinical and observant. Is he being appropriate? Is he responding? Is he regulated? It was exhausting, really. Forty-five minutes of running and swinging and throwing bean bags and I’d be rushing through a checklists in my mind. Had I forgotten to see the little boy’s tender smile, his lips peel into laughter, his eyes shining with excitement or was I too busy looking for clinical and critical responses, forgetting that sometimes the most important thing we fail to notice is subtle delight glowing in our children’s faces.

Some days I just want to see my child content. That’s all. I don’t want to analyze or discuss or interpret. I just want to see him joyful and see it for what it is. Nothing further. I don’t want him to feel the pressure either -- to see me in the corner sitting in a folding chair, arms crossed and face edged in worry. I want him to know that he is loved for the boy he is -- not the boy that he is “supposed” to be or should have been “if not for the autism“. I want him the way he is, spinning in his rings, his delicate, pale eyelids shut tight, and his beautiful smile spreading softly like angel wings.

Sean has autism. It is not who he is. He is a boy first. My boy who works so incredibly hard to feel a part of this difficult world-- to somehow fit in. And hard work shouldn’t go unnoticed.

Skydiving and Petting Cows

The boys and I were hanging out in Sean’s room, winding down from the day. Sean was getting into his covers and his brother was sitting at the end of his bed. I turned off the lights to get Sean ready for bed and he said sweetly,

“Can you talk to me, Mommy?”

I sat down on his bed, the room dark, and he said quietly,

“Sometimes I have good dreams.”

“You do?” I said, surprised. Most of the times, when I ask him what he dreams of he says quickly, “Nothing.”

“Yes,” he whispers.

His older brother, curious asked, “What do you dream about, Sean?”

He pulled the covers over his face and said happily, “Farms. And petting cows. And sometimes I am skydiving.”

His older brother laughed kindly and said,

“Yes, Sean. Sometimes I dream that I can fly, too. It’s so awesome. Maybe you’ll have a dream that you are skydiving and you land in a barn and you can pet the cows.”

“I love petting the cows in my dreams,” he said, his voice softened with the memory of his dream.

His brother said, “Yeah, I love the good dreams. I don’t like the bad ones. Sometimes I dream that someone is chasing me and I can’t scream for help. And one time I dreamt that a bad man took Sean and I couldn’t stop him and he took Sean away from me.” his voice scared.

Sean said, “I have bad dreams about zombies.” his voice shaky. “I don’t like those dreams.”

I smoothed his hair and kissed him on the forehead. My poor little guy is like me -- frightening images are tattooed in his mind, constantly interrupting thoughts. When I was a little girl I was so afraid of the movie Cybil. I covered my eyes but couldn’t get the horrible mother’s voice out of my head and the little girl’s fearful voice. I still can’t watch that movie.

“No bad dreams tonight, pumpkin. Think of skydiving. Dream of the cows.”

I stood up and took his brother to his room, his hockey posters and medals hanging on his walls. I pulled back his NFL covers and tucked him in.

“What are your good dreams, Mom?” he asks, burrowing his body into the covers.

Do I dare tell hin that everyday I dream that Sean will come to me, with promise and hope in his eyes, words like honey dripping from his lips, his conversations on-topic and his body free of the impulses and hopping and the strange noises that he sometimes makes. That he will be the boy I have always dreamed of -- a boy who can run and play easily with others, who can read books and comics, who doesn’t cry or scream when things don’t go his way and who can live in a world that doesn’t feel like it is swallowing him whole.

But I don’t. I tell him that my favorite dream is that I am flying, my arms stretched, scraping clouds and blue sky with my fingers, looking down over green hills and pastures of wheat below, and my heart beating electric.

And I don’t share with him the nightmares I have had either. The one where he and I are playing with Sean near a river, the water clear, cold and rushing with purpose. I look away for the briefest moment and when I turn back, Sean is falling into the river, his body disappearing, the river water turning muddy, almost black. I frantically reach my hands, my arms into the freezing water, searching for his little fingers, a shoulder, a hand but pull out only smooth rock and silt. I yell at my oldest to help me, his small arms, shaking and panicked, hot tears on his cheeks and his hands surface with nothing, nothing but river water and sticks and pebbles.. And I cry, my fingernails digging into the earthy riverbed and yell until I am sitting up in my bed, a scream caught in my throat, my armpits damp and I finally wake. It’s not real. He is sleeping soundly in his bed. It is not real. I haven’t lost him.

But I cry anyways because this nightmare (and I have had it several times) seems too real to me. And because the metaphor of this dream, that I’m losing my child to autism, haunts me, not only during the daytime, during the tough moments, but also the fear stays with me at nighttime, penetrates my sleep and plays itself out in my dreams. Sometimes this dream takes place at the ocean or a swimming pool, but it always ends the same, my oldest son and I are crying and searching for the little boy who has been stolen away from us, trying to touch his skin, hear his voice, trying so hard to keep him with us, in our arms, our relieved sighs against his sweet red hair.

I don‘t share this with my oldest. I am sad that he is even in this terrible dream, that he is standing next to me, frightened, doing his best to save his brother, doing all that he can to save me from such despair and not being able to do so.

Then I am reminded that my favorite dream is realized. It’s the luck of a good husband, of two little boys who teach us everyday that all we can do is just love them simply and kindly. So I try to push the bad dream out and I try to replace it with the one where my beautiful boy is laying in the hay, the sun warming his shoulders, his cheeks and he is with the beloved cows, petting their soft coats. He is happy and he is laughing and he is safe. Yes, he is safe. And yes, he has dreams. My boy dreams.

A New Year

Lately I can’t sleep. I can fall asleep but I can’t stay asleep. Around 4 a.m. my eyelids peel open like shades snapping against the tops of windows. Hello world, it’s me and I’m wide awake. But it is January in Portland, and the darkness is inky blank, my own fingers invisible in front of my eyes.

This time of year is tough. Not only because January always seems a cloudy hangover from the holiday celebrations of December, but also because January marks the start of a new year, a time to reflect on the past year and take inventory, another tally mark -- my life getting shorter and my children growing older.

Sean’s birthday is also in January -- a bittersweet reminder that time marches on even if my child’s development continues to lag behind. Of course a child’s birthday is a happy occasion for any parent, that is any parent with a typically developing, healthy child. Another birthday for Sean can sometimes be a lonely reminder that progress is slow, painful and often times below eager expectations. It’s as if I’m losing valuable time -- as if my boy is falling further behind me -- no longer within my grasp.

I have to constantly remind myself to live in the present. The future, like the past, is equally if not more so, painful to ponder. To go there is to go to a dark swimming hole, the water freezing and murky, my skin prickling from just a touch, but knowing I have to build the strength to plunge in, to tread, to keep my head up above the choppy water, because if I can’t, who will?

Sean’s birthday came and went, complete with frosted cupcakes and balloons and presents. He is nine years old. Wow. Last night he came into our bed around 3 a..m. -- his musclely, taut arms and legs wrapped tightly in thermal long johns like sausages. He flung a leg over me and an arm over his father’s shoulder. I reached for his face, cheeks, and touched them sweetly and then I buried my lips into his messy ginger red hair, breathing him in and my tears dampened his bangs.

It is the time of night that I am wide awake with my thoughts, my worries. There he was, sleeping, his breath almost a snore and I let myself remember when he was a perfect, sleeping baby. Where did the time go?

I wish I had the energy or maybe it is the hope to dream on the cusp of a new decade. The last decade was full of movement, of highs and lows -- of babies growing stronger, taller to little boys -- of a diagnosis that not only changed my son but changed us all. We are much more tentative. We balance hope and reality delicately -- holding on to a better tomorrow and yet trying to keep our hearts whole.

Happy Birthday, Sean. I’ve made my wish and now it’s time for you to make a wish.

A Winter's Dream

The Christmas season came and went -- a blur really. I had hoped to slow it all down -- to relish in the simple, spontaneous moments but got caught up in the whirlwind. December started out quickly with a trip my husband had planned to Shanghai, A short trip, really -- only seven days -- there and back in no time. No time to brush up on his Mandarin or much sight seeing -- just business. He has been to China many times. He first went to China during a college overseas program. After China he moved to Taiwan to teach English for a year. Since I have known him (more than eighteen years) he has been back and forth many times. At one point, before autism entered our lives, he had hoped to live there with the boys and me for a summer at least, maybe longer. But like many plans that at one point seemed so reasonable and logistical, it soon became unlikely. But who knows for sure.

We headed out to Chicago for the holidays to catch up with family. Ten days that came and went like wind -- fast and furious and never enough time to see all those who we want to see. It snowed, my parents’ front lawn looking like sheet cake -- smooth and white glinted with sparkles. The boys joined their cousins for sledding and snowball fights, Sean running and laughing his cheeks burning red with chill, his boots wet with melting snow. The days peeled by like Christmas wrapping paper torn from boxes and toys -- the anticipation building and peaking to an ear-splitting crescendo, leaving my mind ringing with echoes days after.

And today, back in Portland, I watch the snow lingering in the dusk -- like feathers from a torn pillow, floating carelessly. The flakes tangling in the empty branches of the elms and maples, like diamond bangles on bony wrists, like silver spider webs in the giant firs, like melting starlight spilling on the ground, the swingset, the lattice in the garden. For an evening, my backyard looks like a postcard -- a winter wonderland and I catch my breath every time I look out the big picture window.

It slows me down, reminds me to take a moment to drink it all in, the reflection of the Christmas lights twinkling off the glass, the sounds of the sleds being pulled into the garage, my childrens’ excited breathless laughter and the wet puddles at the door. This is the gift I have wanted most -- this present with its dreamy bow on top, hugged in ribbons -- a snowy memory swimming in tissue paper.

Tomorrow it will probably all be gone -- the marine layer working it’s way in, the colder winds shrugging off to the east and the snow warming to rain, washing it all away like a shaken Etch-a-Sketch. And tonight will seem only a dream, the branches losing their coats of silver and crystal melting to a swirl, the miracle of it all so fleeting.

Brothers

It was going to be a long afternoon. Sean wanted to play basketball outside which is fine -- the weather, albeit cold, was unusually sunny. He ran to put his high tops on and grab a ball and he headed out to our neighbor’s basketball hoop. The first try, arms between his leg, the old granny-style toss, proved to be unsuccessful, the ball floating through air, touching no net, not even rim or backboard and sailing straight down in front of him. He started muttering. Second attempt was worse. It actually went over the backboard and landed in the neighbor’s June berry bush. His hands began slapping against his legs and his voice got angrier,

“Don’t watch me, Mommy. Go inside!”

“Sean, you are not going to make every basket. You have to be a big boy. No yelling.”

“ No!” he yelled, his voice edged in hysteria, “No! You go inside!”

Sean’s big brother appeared at the door, “Why is he mad?” he asked.

I walked toward him and explained that he was frustrated that he wasn’t making any baskets.

“I’ll help him,” he said and went down to the street. Sean was still angry as his brother tried to steady him, telling him to calm down and aim for the net.

I watched from the porch as each shot missed the intended net and Sean became more out of control.

“That’s enough,” I said walking to Sean and grabbing his arms and shoulders. He twisted and screamed, his body stiff as I tried to carry him into the house.

“It’s okay, Mom,” his brother said. “He’ll be fine when he makes the basket. I know. He does this.”

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You're stuck with the one you've got.”

Charlie came back in the house, bent down to Sean and said, “Come on, Sean. You can do this.”

I reminded Sean that he needed to be a big boy and no screaming.

“But I am frustrated,” he said, his face tear stained, even his ears were flushed red.

“I know, Sean, but you need to find a better way to deal with that. Screaming and carrying on like that isn’t going to make it any easier.”

“You stay inside, Mommy. And don‘t watch me.” his voice starting to calm, his order declared.

His brother went out with him and after the third try Sean made it. I watched secretly through the blinds and although my view of the basket was obstructed by the giant red cedar, I could see Sean’s body relax, his fists unfurl and heard no yelling -- every indication that he reached his goal.

The two brothers came back into the house, with the older brother saying,

“Good job, Sean. That was awesome. I can hardly make that shot either.” The last sentence he spoke was untrue -- he could make that shot blindfolded.

Sean was still breathless and anxious. He had built up so much anxiety over making the basket that it took him the rest of the afternoon to calm down and to lose some of his edginess.

By evening he was better, although he was tired and cranky.

“Listen to my music with me, Mommy,” he asked, toothpaste on his chin and his pajamas inside-out. I sat down on his bed while the music floated out of the CD player -- the flute and violin softening the night.

His older brother came in a few minutes later and said, “I will stay with him, Mom.”

“No, that's okay. Thank you, though." I whispered.

Then Sean piped up, “You stay with me, C?”

“Sure, Sean,” He said.

I tucked them in and said good nights and went to my room which is directly across from Sean’s room. I listened to them talk. They do not talk like brothers who are only 19 months apart. Sean talks about things that matter to him and only him,

“Who do you want to be in Monsters vs. Aliens? “

His brother plays along, “Can I be the Missing Link?”

Sean thinks it over and says, “Okay. You are the Missing Link. Is Shrek Pixar or Dreamworks?”

And then, like he always does when he goes through his litany of questions answers his own question, “Dreamworks. Yes, it is. Dreamworks.”

I am about to leave my room when I hear his older brother say kindly,

"You are a really good basketball player, Sean. Maybe someday we can play basketball together. What do you think?”

Sean doesn’t answer. There is just silence for a moment and then Sean says,

“Yellow is my favorite color.”

More silence. “I like blue. Good night, Sean,” his brother says softly.

I really wanted to hear, and for the briefest moment thought I might, Sean answer,

“Yes, I do want to play basketball. That would be fun.”

But my boys don’t have conversations like that. My older child is incredibly patient, but I couldn’t help think that sometimes he must long for the brother who can shoot hoops and talk football and tell jokes with and share stories.

My mother would say, “You never miss what you never had.”

Maybe that’s true. This is the only brother he knows -- a little brother that he has always protected and loved. They are not rivals. They hardly fight. They don’t have a lot in common. But at the end of the day, they are brothers -- and I don’t think either would be the boy he is without the other. They make each other better.