Snow Day

SNOW DAY

December 9, 2013

Prelude: This was a journal entry where I just kept writing, and before I knew it I had a little short story. I eventually began writing my memoir, "Dante's Journey" and decided that this could make a good first chapter.

            Most weekends, you’d find me riding with my mother to the Landis Twin to catch a matinee.  The excitement would build with every red light we hit, until finally            

Most weekends would find me riding with my mother to the Landis Twin to catch a matinee.  With every red light that we would hit, the excitement would build, until finally mom would pull into the bank parking lot next to the theater and we make our way to the ticket booth in front of the theater.  It never really mattered what we were going to see, although if it were a comedy that would always be a bonus.  I loved to hear my mother’s laugh, and after my father passed away that glorious sound was rare.  So, you see, the entire movie-going experience has always been a sacred one for me.   

            This phenomenon of mine would begin entering the lobby, and enduring all the pomp and circumstance that transpired until the opening credits would reveal themselves on screen.  The scent of popcorn popping was intoxicating, especially for a fat 9-year-old like me.  Entering the theater, we would make our way to our seats, the lights would dim, and the anticipation would grow.  We would sit through a preview or two, not the five or more that would drag on like today.  And finally, the studio icon would appear signaling its showtime, occasionally, I would still get goosebumps whenever I would see the mountain of Paramount studios, the Universal planet or the roaring lion of Metro-Goldwyn-Mayer, just to name a few.  We were on a journey together, mother and her son, but what I always found special about it was that we shared this journey with a theater full of strangers as well; everyone was along for the ride.  And while I still enjoy a good movie either with good company or alone, to me, there is nothing as intoxicating as watching a film on the silver screen.   

For about two hours we forgot about all our problems and concerns, it was glorious.  Our sense of anxiety would disappear, and we immersed ourselves into another world, absorbed in a fun and exciting journey, at least for a little while.  This ritual developed shortly after my father’s funeral, so it makes sense why my mother and I both appreciated the escape that going to the movies brought us, it provided a sanctuary from the new world that we were both now assigned to live in.  

I saved every ticket stub to every movie I went to with my kids.  They are in a jar that sits on the desk in the room we call the “office”.  This is a tradition that I picked up from my mother when we went to the movies.  Since some of the best times I had with my mother were when we went to the movies.  I wanted to share that same experience with my kids when they were old enough, but I never thought one of my children would have a difficult time sitting through a movie, or talking, tying his shoes, writing his name or dozens of other tasks that children easily perform every day.  I never thought one of my children would have Autism. 

             I pulled into the parking lot of the AMC Deptford 8 with my son Dante.  It was five minutes to eleven.  The movie time was for eleven, which everybody knows really means around 11:25 with all the previews.  Only a dozen or so cars littered the parking lot, which made me confident that we wouldn’t have trouble finding a couple of seats for our show.  I took a deep breath and turned off the engine and sat there for a while as Dante peered out the window as he always does when we go for a car ride.   His eyes gazed all over the landscape, examining the parking lot, and the cars passing by on the busy road, I mentally prepared myself and after a few minutes of going through my email I gave in to the inevitable. 

            “Ready to go Dante?”  I asked my son. 

            “Ready to go,” he said in his trademark low toned voice.  What I wanted to hear was a ‘yes’.  Dante often repeats what you say to him.  Our speech therapist wants us to prompt a different response other than what we just said. “Yes,” would be a better response.  I then open my mouth and mouth the beginning of the word “yes.”  He gets it.  “Yes”, he says.  Good boy.

             As I opened my door, I made the sign of the cross and began to walk around the SUV to let Dante out.  A mini van was pulled up next to me as I opened my door was a father with his two little girls.  It was evident that he too had the same idea; snow day with the kids, let’s go see a movie.  However, for a fleeting second, I couldn’t help but feel a little jealous of him.  I also felt ashamed and angry at myself for that second of jealousy.  I’m sure his movie experience will be stress free.  The father got out of the minivan with a slightly annoyed look on his face.  Maybe he didn’t want to take the girls?  Maybe he lost the flip of the coin with his wife, and she went to get her nails done.  All I know is that his girls (maybe seven and nine years-old) jumped out of the minivan chattering and obviously excited for the matinee.  I walked around to the passenger’s side and opened the back door of my SUV.  In the third row sat Dante still looking outside of his window with a grin on his face.  Dante likes sitting in the third row, so it was a new traveling ritual.  His hands were stimming a bit, but I could interpret it easily; Dante was excited.

            “Undo your seatbelt, let’s go,” I said. He went to push the button but began to struggle just a bit.

            Now in his defense the button is deep in the third row and added into the equation is the fact that his car seat lifts him up two to three inches.  It can be a real pain even for me to push it.  His fine-motor skills aren’t very “fine”, which makes it difficult for him to hold a pencil or a utensil.  As I stood patiently waiting after only a few attempts Dante finally unfastened the seatbelt.  I locked my SUV as we began to make our way to the theater.  With every step I grew more anxious and nervous.  Other parents were walking in with their kids without a care in the world.  They knew their child would make it through the entire movie.  They wouldn’t have to watch their child every other minute hoping he or she was ok.  They would laugh at the right places or maybe cry not anticipating their child making unwanted moans or squeals as they stimmed searching for some kind of sensory input.  Their child wouldn't ask them the same question four or five times in a row, because for some reason they couldn’t stop.   The loud booming audio level wouldn’t be a factor for their child.  They would be able to just sit and relax knowing full well, that their son or daughter was enjoying the film and not experiencing any neurological chaos.  For this reason, and only this reason I do envy them just a bit. 

I held Dante’s hand as we approached the ticket window.  I asked to speak to the manager and as we waited my mind flashed back to Dante’s first movie experience.   On June 27, 2010, Dante went to his first movie, Toy Story 3, I keep all our movie ticket stubs.  It was a matinee of course, and for the most part he loved it.  He was three and at the time I was still in denial about his autism although my wife not so much.  He had to go to the bathroom three times, but he made it through the entire movie.  Normal behavior I thought, every little kid has to go to the bathroom too much during a movie. Back then he didn’t stim near as much as he does now, but he also didn’t talk either, or he never really looked you in the eye.

On July 8^th, 2011, we went to go see Cars 2.  This one I was excited about, because Cars was his favorite movie, and I knew he would love it.  It turns out we had to leave the theater twice, because he was getting upset about something and we couldn’t figure out what it was.  Each time we calmed him down, and went back in, only to leave again shortly thereafter.   That’s one of the worst things about having a child with autism, when they aren’t very verbal you don’t know if they are upset or what they are upset about.  Are they in pain?  Are they hurt?  Is somebody bullying them in school, or worse?  How can they communicate their troubles to you?  They sometimes can’t, which makes it almost impossible to help them, but you still try.  The puzzle piece is the perfect symbol for autism.   You try to piece together what few clues they can give you to understand what they need.  But fortunately, Dante inspires me and crashes the pity party that I throw for myself because what he goes through is a million times worse than what I experience. 

            And of course, the “million times” is just a feeble estimate on my part.  I only have an idea of what he goes through.  It might not be as bad as I think, or it could be much worse.   The thing is I have no idea what he might be going through, but it can’t be good.  Having difficulty to communicate, and sometimes not getting through to us at all must be frustrating to say the least.  Searching for sensory input because it is too loud or because you can’t feel your hands or your chest or head.  But the worst part of it must be feeling as if you are letting your parents, teachers, and therapists down because you see the frustration in their faces.  Sure, you try to hide it, but sometimes it’s just evident.  I know he sees it, but the thing is, it’s not frustration toward Dante, its frustration and anger toward Autism (the A word).  But how do you reassure him?  By doing just that, reassuring him and hoping, praying he understands.

            So, we tried again with Madagascar 3 on June 23, 2012.  Although Dante is not a huge fan of Madagascar movies, I thought it would be great for the entire family, (My daughter Angelina is three at this point).  We got through maybe thirty minutes of the movie before Dante began having a hard time sitting still and then he began to stim.  Sometimes Dante stims quietly, but this time he was moaning and squeaking quite a bit.  I stayed with Angelina and my wife took Dante with her and sat in the car.  After a few minutes Angelina wanted to know when mommy was coming back, so we left.  It was very disappointing that I couldn’t sit and enjoy a movie with my entire family, but I didn’t let Dante know.  Even though he barely talks, I know that he hears and senses everything. 

On June 29, 2013, my wife and I took Angelina to go see Monsters University.  It was great watching Angelina enjoy the movie, but throughout the entire film I couldn’t help but miss that little boy we left behind at his Baa’s house.  It was so unfair that he was missing this family time.  I was sad for him and for me.

            Going to the movies was one of many things that I looked forward to doing with my kids.  I am a movie geek, and I couldn’t wait until they were old enough to go and bond with them at the movies.  The Madagascar 3 debacle really depressed me.  I didn’t think Dante had the attention span to sit through an entire movie.  His autism wouldn’t allow it I thought.  Since his diagnosis in October of 2010, I had grown more and more realistic about things Dante would struggle with.  I knew sports would be very difficult for him, and conversations also, but for some reason I hoped that we could go to the movies together.  Some of the best times I had with my mother were when we went to the movies.  I just wanted to make the same memories with him. 

            When the manager finally arrived, I explained to him that my son was on the spectrum and that for some reason he couldn’t make it through the movie could I please get a refund?  The manager immediately assured me that wouldn’t be a problem.  He also informed me that there would be sensory friendly movie showings coming the next year for children with special needs.  I was very happy to hear that.

            As we made our way to the concession-stand I grabbed a large popcorn and soda as well as a box of Sour Patch kids.  I had already smuggled in a bag of cheese crackers, gummy bears plus two juice bags, so I was set.  My past movie experience with Dante had taught me to go in as late as possible to a movie so it was 11:15 and most of the previews were over.  I was delighted to find that the theater had plush leather sofas that reclined.  Awesome!

            As we got settled in our seats, I took off our jackets and began to divvy the snacks out.  Dante was taking in his surroundings and adjusting to his new environment.  I made sure my phone was off.  Finally, the Disney symbol appeared on the screen and Dante’s eyes locked in.  Dante knew what that castle meant after our pilgrimage to Orlando this past summer. 

            “Mickey Mouse,” he said in his soft-spoken voice.  It was in the Magic Kingdom where Dante found his voice, more on that later. 

            For the first thirty minutes or so of the movie, Dante was very content watching the movie with the aid of the candy and apple juice.  The snow man that he loved to watch during the commercials hadn’t come on screen yet.  The film focused on the two sisters and their relationship that set up the plot to the journey that is a big part of the movie.  But I could tell that Dante just wanted to know when the snow man would show up, and he started to act out.

            “Snowman?” he asked.

            “The snowman is coming; be patient you are doing great.  Hang in there.”

            “Go to Baa’s house,” He asked

            In Gujarati the term “Baa” refers to grandmother.  My wife is Hindu, so when we go to grandmother’s house, it’s really Baa’s house.  But Dante says certain phrases repeatedly when he is either upset or he wants something, and it isn’t necessarily exactly what he’s asking for.  For some reason his brain gets stuck on a certain phrase when he might be trying to say something else.

            “Go to Baa’s house?  Go to Baa’s house?  Go to Baa’s house?”

            “Not now, the snowman will be here soon.  Hang in there.”

            Dante then put one hand over the other almost in a yoga pose for sensory input.  He began to moan repeatedly with a subtle rock back and forth.  I rubbed his back hoping it might help but knowing full well that it wouldn’t, but I had to do something.  I wish I knew what to do if there is anything.  The groans aren’t too loud, but they are loud enough for the people behind us to hear.  I know what they must be thinking. “What a horrible parent, can’t even control his kid.”  That’s what I probably would have thought seven years ago.  If there is one thing that autism has taught me it’s to be more patient to everyone around me, even the “normal people.”

I always try to treat both of my kids, Dante and the “normal” one the same.  So I decided to play a card that I would have used with my four-year-old daughter.  Bribery. 

“Dante, do you want to go to the concession stand and get some more candy?”

“More candy,” he answers.

“You say, ‘yes please.’”

“Yes please.”

And so, we went for some Sour Patch kids.  We returned to our seats when,

“Open them please.” Nothing like candy to motivate a child.

“Sure, give me a second.” I opened the box. “Here you go.” I held onto it a second waiting for the correct response.

“Thank you,” he said.

“You’re welcome,” I replied. Then I tried something we’ve been working on.  I wanted Dante to understand it’s good manners to say you’re welcome when you give somebody something they want.

“Dante, can I have the box back for a second?” He hesitated but then handed me the box.

“Thank you.” Wait for it.  Wait for it. “Dante, I said, ‘thank you’“You’re welcome,” His mouth full of kids.

Finally, the snowman appeared.  The rest of the movie with the extra reinforcements of candy and the long-awaited snowman went by without a hitch.  For a few minutes I’m not even paranoid. I’m relaxed, enjoying a movie with my son.  I’m getting something that I always wanted.  I’m sitting with all the other parents with their “normal” kids, and I am at ease. 

The credits’ role, the lights come on, and everybody is walking out of the theater, except us.  Dante is now even more content, watching in astonishment as all the people that maybe he didn’t even know were sitting all around us leaves the theater.  After a few more minutes I took him by the hand and coaxed him out of his chair.  We walked out to the lobby and sat on a bench next to the restrooms.  I knelt in front of him.

“Dante, I am so proud of you.  You made it through the entire movie.  That was awesome.  "That made me happy.” I confessed, smiling like a lunatic.

“You’re welcome.” soft voice and smiling eyes protruding.

I fought back the tears.  He totally understood the concept of saying ‘You’re welcome’ and he knew he gave me something that I had wanted for a while.  Either he heard me talk to his mother about it or he just sensed it.  Today wasn’t so much about him, it was about me, and he knew it. 

We made our way through the lobby doors holding hands both smiling from ear to ear.  I caught the manager’s eye in the ticket booth, and I gave him a thumb’s up, and he nodded.  Across the parking lot, I see the father that parked next to me bickering with the girls he brought. 

These parents they don’t know how good they have it; I think to myself.   I would love Dante to argue with me instead of stimming, flap or squeeze his hands and moan.  I know he would love to get the words out also and give me a piece of his mind from time to time.  His speech is improving every day, but he has a long way still to go.  He just began talking this past summer, some of the words he gets out are curse words, but I don’t reprimand him, there was a time I thought Dante would never talk at all so anything that he says I celebrate.  I’m not sure where he mimics this type of catch phrase but, if he utters a “What the fuck?” I’m fine with it, since it’s in the proper context.  If anyone around us looks uncomfortable that’s just too damn bad.  A phrase like that is no different than other behaviors that bystanders witness with their judgemental eyes and perceive as uncouth.  I mean is it any different than when Dante exhibits brief moments of humming or moaning to deal with a new environment or a little hand-flapping until I ease him into a transition of “quiet hands”?  I mean really, what the fuck?

I have always been a student of my son’s actions, interpreting what they mean, and understanding why he feels the need to practice them in the first place.  Through this process I tried to adopt his point of view on everything, in trying to connect with him and assimilate his actions in hopes of better interpreting how he thinks and views the world around him.  Everyday there is a new puzzle to solve, or a different obstacle to overcome, I have embraced this paradigm, and it reinforces a lesson my mother taught me long ago.   From day one she told me that it’s not the destination but the journey that really matters, and on that journey, there are days you will always remember and days that you never forget, Dante is a constant reminder of my mother’s maxim, because autism is a journey that I never planned for and one that I will despise and loathe, but I sure do love my tour guide.