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.

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 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.