Apr122014

My Sundays at Disneyland

I spend nearly every Sunday morning at Disneyland with my son James. It’s the best time of my week, something I always look forward to.

I’ve been a season passholder as Disneyland for several years. My son and I go nearly every Sunday morning, arriving just as the rope drops on Main Street in the happiest place on earth.

We have our routine; we go to Space Mountain, Star Tours, Astro Blasters, then make our way over to Indiana Jones, Big Thunder Mountain Railroad, Splash Mountain, and Pirates of the Caribbean. If you arrive just as the park opens, there are no lines, so it’s easy to hit all your favorites and be done by lunchtime. We put in our four hours, eat, then go home. photo 2

It’s the best four hours of my week.

There is a moment for me each week when I can measure how happy and relaxed or despondent and distressed I am, and it happens on Space Mountain. As James and I walk up to Space Mountain, he often bounds on ahead of me jumping with excitement, and I soak in the thrill he gets from being there. When the ride starts and we go over the first hill, I hear him squeal with glee, and I feel thankful for the time I spend with him. I find myself thinking about what’s happening in my life, replaying the week’s events, and contemplating my place in the world — for about 30 seconds.

Then we hit the drop in the middle of the ride.

I don’t know what it is about that hill. It’s not large by roller coaster standards, but it triggers something inside of me, and I just start to laugh. If I’m in a particularly good mood, I tear up and giggle until the end of the ride.

Some people go to church on Sundays to find the Divine. I go to the Wonderful World of Disney, and I wouldn’t have it any other way.

The Tower of Terror

James loves it, but it really scares some people….

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Splash Mountain

James fully embraces Splash Mountain.

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Since James was very young we noticed he was often blissfully happy. My wife and I comment to each other that our duty as parents is not to mess that up. It’s all too common for parents with special needs children to view them as broken, and unfortunately, the children come to see themselves that way too. Accepting these children as they are and learning to enjoy their specialness is the greatest gift a parent can give themselves and their special needs child.

The Obsessive Joy Of Autism

Written by Julia, April 5, 2011 at 6:03 pm

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are: sudoku and Glee. I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now. It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Glee in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”.

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

Like many autistic children, James loves water. When he sees a fountain, his experience is much richer than mine. I may never live vicariously through his stellar accomplishments, but I can certainly live joyously through his plentiful, beautiful, simple moments.

BTW, I’m not the only one to connect with their special needs child through Disney. The link below is an excerpt from a book. It’s long but a good read.

Reaching My Autistic Son Through Disney