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.

Flying High

The lobby of the Hilton Waikiki is pristine -- creamy tile, orchids and hibiscus spilling out of pots, palm trees dotting the entrance, and kind faces with colorful leis resting on shoulders and chests. Our seven days of vaction had passed and we were leaving. Night was spilling over the resort, the ocean lit by tiki torches and the stars dazzling above. We waited to collect our luggage from the bellhop as the soft music of ukulele and steel guitar floated in the warm air.

Moments later it was shook up by Sean’s stimming. Hollering, squealing, hopping, clapping and slapping his legs. He was happy and yet the crashing of his body erased the serenity. The bellhops, tourists milling in the lobby, the employees at the front desk and the doormen all stared at him. I could feel the heaviness of eyes on us. Some with wonder, some with irritation, some with surprise and shock and some with pity. We couldn’t move fast enough to get our luggage (Sorry, it must be in the other closet. Just take a minute.)

Sean’s stimming kept building as he looked at his father and me and saw our discomfort and frustration grow. His brother went to him and tried to calm him but he just pulled away hard and began hopping and slapping the tile while squealing in a loud shrill.

“I’m sorry,” I said to the men at the bellhop stand. “He can’t really help it.”

They were kind and smiled, young men who were somewhat mildly entertained at Sean and impressed with is ability to leap so far. I turned away, my cheeks flushed and my nose and throat sweating with tears. The luggage finally showed up and we were hurried off in a taxi.

Once inside the taxi, the tears came. I looked out the window to hide from the kids’ faces but my oldest knew why I was looking away.

“Are you okay, Mom?” he asked sweetly.

“I’m fine, bug. Tired and ready to just get on the plane.”

The rest of the ride he entertained his brother playing an alphabet game. Even the taxi driver marveled at the kind boy who played so nicely with his little brother. He continued occupying Sean while we waited and waited at the airport.

When we came home I reflected on our trip (my first trip to Hawaii). It was a trip that I was completely excited about as I often forget how much work it can be to travel with a child with autism. I did a quick recap. I didn’t want the last memory to take away from the good moments.

Each morning we took turns taking Sean for a walk -- he woke up early and would get loud in the condo.

“You need to walk, Sean?” we’d ask him.

“Yes!” he exclaimed, his need to move and hop hardly contained in his little body.

We walked along the beach, stopped and watched the black footed penguins get fed, looked at the koi in the pond, and the flamingos, their bony legs like sticks, balancing on one foot.

We did so much on the trip, all credit to my husband who did all the research and planning and driving all over the island. We explored gorgeous, desolate beaches with smooth white sand and blue green water. My husband chased Sean out of the truck as he headed straight toward the waves, his arms and legs stretching forward, a smile thick on his lips.

Sean was happiest in the ocean, the pressure of the waves on his body providing great comfort. He wore his tight snorkel mask, his sunburned body floating over coral, watching the zebra fish chase in and out. He was delighted.

He didn’t do well at the resort pools. Too crowded, too much noise. My husband would take him back to the beach and I would stay with my older son who was tired of the sand in his shorts and the salt in his eyes. He was ready to chill in the hot tub or go down the water slides.

I’d be lying if I said there were no tough moments. There always are. Meltdowns, tantrums and stimming are a constant reminder to us that we live with autism. Sometimes we think what it might be like if Sean was neuro-typical. Would are boys be good friends and play together on the beach and at the pool? Could they roam a bit on their own? Would my husband and I be able to have freedom to sleep in and do what we like? Sean is nine years old but requires the supervision and care of a boy much younger in years.

And then I remind myself that it is what it is. I love him. I wish he didn’t have to struggle so much. I wish it could be easier for him, for all of us. But it is what it is.

I love the picture of Sean above. We were near a crowded lagoon and he was becoming increasingly uncomfortable. He began to hop. I snapped a quick photo in the throes of his stimming. But why I love the picture is because if you look closely you can see the world behind him was moving with color and noise, heat and energy and yet you get a still sense of release and freedom from his body and happiness in the movement.

His body is often out of sorts and stimming is the way he regulates. As a parent, stimming is something difficult to manage. I don’t want my boy to hop and squeal, his hands clapping loudly. People see the stimming and don’t get to see the boy inside -- the tender child who knows that he is different but can’t stop himself because when he stims his body feels right and the movement regulates him. This picture reminds me that there are moments during his stimming that are a flash of beauty. In this photo my boy is more than a spectacle -- my boy is soaring, above all the pain and distraction in his world. He soars, his fingers tickling the blue sky.