I was listening to a podcast about a mother of a man with autism.  She was trying to prepare for her own demise—not at all concerned or fearful about her death or what comes after—but about her son.  How would her son get along? Much like most individuals with autism, her son is not capable of taking care of himself without help.  He doesn’t communicate well, and has a very difficult time socializing outside of his family.  In many ways, he is still a child.  She was able to buy a house for him across the street from her own, and he decorated it with his favorite stuffed animals and new themed throw pillows.  Again, much as a child would.  Luckily for them, the story ends happily.  Mom is still alive and well, and the neighbors are starting to pitch in and help to look out for him.  He has a community where he finally belongs and has the opportunity to experience living on his own with guidance, and under the careful eye of his own mother and caretaker.

I was listening to this podcast on my long commute and it set me in a pretty bad mood. I’m glad that their story ends happily, and I pray that ours does too…but where are the stories of struggle, and pain, and anger, and embarrassment?  Living with a family member with autism is taxing, it’s a full time job, and the worries never really end.  Growing up, I was terrible to my brother.  I would yell at him and take my frustrations out on him because it felt like he was never listening, or that he took pleasure in destroying my things, or flooding the house late at night, or running away only to be hauled in by the police.  My family was always stressed, and every decision made was centered around Mikey and what would be best for him.  I rarely invited friends over, and the few that I did had to be really close to me and understanding of our situation.  I couldn’t bring just anyone into my house—I had to trust that she wouldn’t spread my business all over school.  How do you explain why you have locks on all of the windows and doors to your house? Or why your family only has pizza, bologna, Top Ramen, and Beefaroni in the cupboards? Or why your brother sometimes smears his feces on the wall for fun and refuses to wear clothes?  How do you describe autism to a child, when the only reference up until then was Rain Man? How do you convince someone that Michael is not ignoring or staring at them in a rude manner—he just can’t explain what he is thinking or seeing?  How do you explain why  he is dunking a potato in water, holding it over his head, and humming the theme song to “The Addams Family” show for a solid hour?  How do you explain that his sudden screaming outbursts and head poundings are totally natural?

I made up lies at school about how much money we had and the perfect life we lived on the weekends when my school friends couldn’t attest to the real truth.  I never denied having a brother, I never made up additional family members or anything like that—trust me, the thoughts crossed my mind—but I didn’t go that far.  Instead, I would concentrate on the better stories, leaving out the destruction, and chaos, and quirks that my brother created in our house—stories that happened long enough ago that we can only now laugh about them.

When I was younger and got my ears pierced, I was so proud of the sparkly pink gemstones in my ears, showcasing how “grown up” I now was.  Then the inevitable happened.  They got majorly infected and my sister spent the better part of an evening draining them and patching up the backs of my ears.  It was one of the few times I remember crying, and I’m not sure if it was out of sorrow for losing my first rite, or if it was because of the pain, or both.  Michael came into the room, took one look at my face, and he too started to sob.  It stunned me into a quick silence, and then the women of the house began laughing.  Something about my situation moved Michael enough to cry on my behalf, or at least with me—and this was the first sign of emotion or empathy he ever really displayed.  He was seven years old.

One of his earlier, more destructive rituals, involved a hanging potted ivy plant in the corner of our apartment.  He would walk over to the plant, stare up at it, and start chanting.  No real words, or at least not words that we could understand, but his focus was real enough.  Then he would walk over to me and start trying to beat me.  I mean, seriously tried to kick the crap out of me.  Luckily, I was stronger and faster than he was at the time, and he only got a few hits in, but after the first few times, I learned quickly that I had about 20 seconds to get behind a locked door.  I don’t remember what stopped the ritual eventually.  I don’t know if it was my non-participation, or mom throwing the damn plant out, but it stopped eventually…and he never chanted his intentions towards me again.

When we moved out of the apartments, we moved into small duplexes or houses on Maui.  These were some of the greatest years of my life.  And Michael’s…it was like we both found a new freedom beyond Harbor Lights.  I was finally allowed to play outside, and Michael thought he would get to explore as well.  Late at night, on several occasions, Michael would wake up and quietly exit the house to go across the street and visit our neighbor, Mr. Wong. His door was always locked…except for one night.

I remember his last visit, he left his slippers outside of Mr. Wong’s house on the front stoop, as if a sign to say, “Hey guys! I’m over here! No worries!’  The only way we knew something was wrong was that our dog, Indiana (named after Indiana Jones, Michael’s favorite hero), was yelping and straining against his leash trying to go after Michael to bring him home.

Michael spent God only knows how long, quietly turning on appliances and lights, and Mr. Wong would never have known that a naked little autistic boy was in his home if Michael hadn’t pushed his luck and started jumping up and down on Mr. Wong’s bed.  Can you imagine? Mr. Wong must have been terrified! He had never really met Michael before, probably just saw him once or twice outside his window—and now here he was, naked, and jumping up and down on his bed. Luckily, he was very understanding, and we were able to laugh about it later.  Much, much later. Like, the day we moved out.

When we moved to LA, Michael found new rituals, but some of them still involved running.  On our second night in the house, we still hadn’t bought a padlock for the front door–something we resorted to after his previous escape attempts—so we took turns sleeping.  I don’t know what time we were woken up, but we were woken up by Whittier Police officers and shown a mugshot of a withdrawn, skinny, little Michael.  Apparently, he waited until we had all fallen asleep, and then took the opportunity to explore the new neighborhood—and please bare in mind—we lived in the BAD part of Whittier. Below Mar Vista.  Yeah.

So Michael left the house, and placed our broom sideways in the front doorway with the porch light on, again, a sign to us that he left, but knew what he was doing.  He then proceeded to walk three blocks up the street, buck ass naked (always), and enter an apartment building.  I don’t know if he instinctively knew which door would be unlocked, or if he tried a few handles, but he found an apartment that was open.  He went straight to their kitchen, turned on all of the appliances, and then jumped on their computer to start playing games.  YES! Seriously! The tenants came out, and saw a naked little boy sitting at their computer, refusing to look them in the eyes or answer any questions.  They immediately thought that this boy must have been abused and ran away, so they called the police.  The police picked Michael up, and took him to the station.  One officer gave him a pair of briefs that were tied in the back to stay up, and another gave him a T-shirt.  Other officers combed the neighborhood to see if they could figure out where this kid came from—and which house had the door wide open, porch light on, and a random broom standing sideways in the door?  7726.  That’s who.  So they entered the house, woke us up, and drove us down to the station.

When we got there, it was obvious that none of them had ever dealt with a kid with autism before.  Seeing his age, they figured he could probably entertain himself.  And he did.  He stopped up the drain to their water fountain and patiently flooded their office, while no one was looking.  That is, of course, the same moment we arrived.  Needless to say, the cops kept Mikey’s mug shot and we were escorted quickly off the premises with strict instructions on getting Michael an ID bracelet.

The next week, Michael spent hours each day, creating an intricate map of our neighborhood.  It stretched all throughout the house on typing paper, stitched together  with lengths of scotch tape, and drawn in blue and black ink.  He marked the streets, the cars parked on the road, the houses, and all apartments that he passed including the number of stairs each complex had, and the doors to the individual apartments.  His map finally ended (as he reached his destination), and his escape attempts continued to increase.  I can’t tell you how many times I have run barefoot down our street after that damn boy.  It’s probably around this time that my insomnia got stronger.

Years after we finally settled in LA, we took Michael to Disneyland.  He became instantly obsessed, and with the blessing of the handicap pass, we were able to visit all of the major rides in about four incredibly exhausting hours. Being terrified of roller coasters, mom and I did not take Michael on any of the “scarier” rides, but he loved Indiana Jones (of course!), Star Tours (we went several times), Space Mountain, and the Matterhorn. Much like his late night excursions, Michael came home from that trip and instantly sat down to map out the park.  He would stare at the copy of the Disneyland brochure that he had kept from the woman at the entrance kiosk, and even created little Disney posters on his KidPix computer program.  He would chant “Disneyland” every single day with a slight vocal inflection to turn it into a question.  He would write the name over and over and over again on slips of paper, or typed out across his computer screen, along with the names of all of the rides he wanted to go on again.  He started planning our next trip.  A trip that would take a very long time to save up for, and didn’t happen for a couple of years—but when it did—Michael had his course mapped out (Indiana Jones first, then Space Mountain, then Matterhorn, then Star Tours, then Pirates…), and his faded and well-folded brochure ready to go.

 

The day that my husband joined us for a trip to Disneyland was a game changer for Mikey.  “Big Magic Dr. Nick” (Michael’s nickname for Nick when he was in medical school) wasn’t afraid to go on the scary rides, and a whole new world opened up for my brother.  Michael went on the Tower of Terror, California Screaming, and others.  He was absolutely elated.  He looked to Nick like he was a hero, the gatekeeper to all that was fun in life.  A year before Nick and I left for San Francisco, we were finally able to afford park passes.  We took Michael regularly and relished the outings with him.  Michael flourished on these trips.  He was active, he was smiling, he exercised patience, and tried really hard to control his outbursts, and rocking, and shrill laughing when he was waiting in line.  He started to create more art and type more to communicate, though he never typed full sentences or said more than a couple of words in a conversation.  He has never had the capacity to articulate his feelings or ideas in words, until January 5th, 2015.

For Christmas this year, I decided to take Michael back to Disneyland.  Due to the price, my mom has not been able to afford these trips with him, and I thought it would be a fun way to get Michael out of the house for some bonding time.  After breakfast, we headed to the park, and Michael instantly lit up.  We were not granted a disability pass as we were in the past, and this was a difficult concept for Michael to understand.  He has never had to wait long for a ride.  He has never had to map out his course according to Fast Track time stamps.  It was all very new for him, but he did pretty well nonetheless.  We hit up all of the major rides except for Tower of Terror (we had to wait three hours before we would be allowed in, and Michael would have had a meltdown waiting in the actual line), and California Screaming which was shut down.

Our last two rides were the Matterhorn and Star Tours.  Though he was grinning from ear to ear, and his shrill laugh echoed off the walls of each mountainous tunnel, there was nothing about this trip that stood out to me as being extremely special for him.  Don’t get me wrong.  He had a blast.  He was exhausted from walking so much, and his critically laid-out plan of rides to experience had been upset by the new rules—but otherwise, he had a great time.  I just didn’t realize how much the trip meant to him, until after we got back home.

A few days after our Disney trip, Mikey was in his adult day art class at WAPADH, and he painted a picture.  Upon first inspection, it looks like an old muddied watercolor  picture of hills.  Not much to write home about.  But in the upper right hand corner, Mikey had written a two sentence poem and signed his name.  Two.  Complete. Sentences.

He wrote:

“Being at the mountains

makes me feel free, happy and

higher than everyone else.

The wind is the only sound out here.”

– Michael Kasahara

When my mother sent me this text, I couldn’t believe it.  I thought someone was playing a cruel joke on us.  My brother doesn’t talk.  He doesn’t write in complete sentences with proper grammar and punctuation. He doesn’t express himself.  Why would someone do this to us?  I spent two solid hours Googling the lines of the poem, trying to find an explanation.  Were they song lyrics that he had heard?  Was it a line from a movie?  Was it someone else’s poem that a worker was trying to pass off as Mikey’s?  After two hours, Google failed to find me a solution.  These really were Michael’s words.  But what does it mean?  Michael’s never been to the mountains.  He’s lived just above sea level his entire life.

Two days later, mom texts me again:

“Did you go on Matterhorn with Mikey?”

Um…yep, why?

“That’s his mountain.”

My heart stopped.  For the first time in his life, Michael articulated his feelings in real words.  He painted us a picture, and wrote a poem to describe his time at Disneyland, on a ride that I didn’t realize he loved so much.  I began to cry.

Disneyland is a park of magic.  It brings cartoons to life, families together, and gave my non-communicative brother with autism a voice.  This trip, this park, and this ride meant more to me and my family than my own words can describe.  For 29 years, I have been waiting for Michael to fully express himself beyond a single word, and here, the Matterhorn, unlocked his voice.  I’m not one to believe in miracles, but I am now one that believes in Disney.