A mom's blog about the mostly ups and sometimes downs of raising a child with autism.
Friday, April 9, 2010
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.
Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.
What is the purpose of this study? The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.
Whom should I contact to get more information? Emily Champoux, Project Coordinator Toll free: 1-800-994-9701 or 206-616-2889 Email: firstname.lastname@example.org Additional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html