Friday, April 9, 2010

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.


Unknown said...

How wonderful (and brave!) that you all took a family trip to Hawaii. I hope you were able to get in some rest and relaxation. Tell your boys hello from our boys!

Perfectly Imperfect said...

Thanks for sharing this experience with all of us! I know it is never an easy life to be a parent to a child with autism, but your thoughts show your fierce love and commitment to being the best mom to your son. He has received a glorious gift in you.

Anonymous said...

I love you poem in the sidebar. It was emotional and totally beautiful.

Love the blog and added you to my links on my blog A boy with Aspergers. Hope thats cool.

Ps not only am I a mummy to a child on the spectrum but also a red head. I remember thinking when little man was diagnosed with Aspergers! If it's true what they say about red heads and their temper plus little mans aspergers I have some great meltdowns to come lol.


Katie Donohue Bevins said...

Thank you, Claire. The red heads -- they are something, aren't they? Looking forward to reading your blog.

And thank you Perfectly Imperfect for sharing your kind words and encouragement with me.

Cinda said...

We were in Waikiki!! Wish we could have all collected together! Great post!

Alicia M. said...

I will defenitly follow your blog but not at work. :) I teared up reading your description of the cab ride to the airport. I know that feeling so well. Thank you for remembering the wonderful times shared with your family prior to those moments. Thank you for sharing them with us.

I also related to your piece for autism speaks. Absolutely beautiful and evocative. What amazing boys you have.


Abby said...

I have an 18 year old son with high functioning autism and he is a world class stimmer. It's even more difficult when your child looks like an adult. But I ignore the stares and comments as I have always done, and just focus on my son, and how well he does, and how brave he is, and I care less and less about how the world responds to him. To me, he is a hero and those who just can't get him are the people who are really disconnected from the reality of this world.

Katie Donohue Bevins said...

Thank you Abby for sharing this with me. It's one of the toughest parts of Sean's autism for me. I get extremely hurt by others mean glares or responses and protective of him. You are so right. I will try to remember this during the hardest times of stimming. Best, Katie

Katie Donohue Bevins said...

Alicia --
Thank you for taking time time to comment and share. It's always a little less lonely when somebody can relate. Best, Katie

Anonymous said...

Hi Katie,
You share your feelings so beautifully! And you make me realize that what I am feeling is normal when you have a child with autism. I could totally relate to your story about waiting in the lobby of the hotel (mine...well one of mine!) took place at DQ. My boy's ice cream cone only had 'one bump not two like it ALWAYS has!!'
Realizing buying another cone was the best answer I went to the counter. The cashier looked at me and said (smuggly) 'so you're going to give in and buy another!? I don't think I would do that.' I tried to calmly explain he has autism but my eyes filled with tears and I just wished I could have disappeared. She did apologize but it still hurts when I think about that day.
My biggest struggle is my response to my son in those moments. I worry sometimes about what others are thinking and I am trying to quit caring. Because when I am focusing on those around me observing I am always less patient with my boy and it just makes the situation worse.
Thank you for being transparent.
You are a great Mom.


Katie Donohue Bevins said...

Hi Sally, Thanks for reading the blog and sharing. Your story at the DQ struck such a chord with me -- gosh, how many times I have been there. I am like you, too. I really struggle with my responses in those moments. I don't know if it gets easier but I think we get better at dealing with it. Depends on the day sometimes.
Hang in there and know that you are not alone -- there are so many moms/dads/sisters/brothers etc that can relate and that truly understand. Best, Katie

Alicia M. said...

Thank you so much for your honesty. I feel exactly the same way but the guilt keeps me from owning it. I truly appreciate your example. This is something I really struggle with. I hate that i need to remind myself why he is the way he is and force myself to be patient. I am not always succesful either. You'd think after a year and a half I'd get it. Thanks for making me feel better with your candor.