#1. When I got my iphone/ipad.
#2. Seeing “The Nut Job” or (some other movie popular right then).
#3. Riding the A train to Hoyt-Schermerhorn station.
#4. Going to McDonald’s on Saturday and getting a Happy Meal.
Only one kid mentioned his parents. He talked of going to see penguins at the zoo and only mentioned his family after some prompting.
I know that a child with Asperger’s has difficulty with episodic memory. Visuals are needed to spark any conversation that is outside their area of interest. Is it that their brains can not extract a memorable event that happened more than a month ago or is a burger and a toy actually a monumental event? Am I being too judgmental? To some, a burger and a plastic toy might be worthy of a parade but these are not children from a third world country or a Dickens novel.
These are children somehow wired differently.
My own moments came so easily.
The birth of my child.
The day Tony Baker walked all the way to my Auntie Betty’s on a cold Christmas eve to tell me I had gotten my first acting job (Auntie Betty didn’t have a phone).
Standing with my ex-husband and my current one as Sarah graduated from college.
Watching her feeding ducks in St. James Park in England, right after I had lost my dad and seeing her talk to and name all the ducks just like my father always did.
Now granted, I have had 45 more years to build memories and have learned with the wisdom that only comes with age, the importance of holding on to precious moments.
My moments all involve others. Significant others. I wonder if Sarah will ever know that kind of joy. At 23, I asked her the same question.
Her top two were both visits to Disney World. One because it was her first time and the other because she was old enough, tall enough and brave enough to ride Splash Mountain. Going to Disney World used to be one of the few perks a parent of a child with special needs could truly enjoy.
The special access pass gave the family front of the line access to most attractions, thus eliminating a long wait in the heat and possible meltdowns. This perk has since been altered much to the chagrin of the Special Ed community.
Some people in wheelchairs or with other disabilities have been renting themselves out to families at a price, so the wealthy can avoid the long lines. While this is a despicable and unethical thing, Disney – who is obviously not hurting for money – decided they could not tolerate the financial and moral hit. This was devastating to parents of kids like my own who simply cannot manage the demands of this environment without some facilitation.
Sarah’s first experience at Disney World in 1997, shortly after I lost my dad, was indeed a memorable one.
We brought a doctor’s note and her documentation, as we knew Asperger’s Syndrome at the time was still an invisible disability. They glanced at it briefly and at my smiling and bouncing daughter and we were given a pass, basically on the honor system.
It made a world of difference as Sarah could never be content riding something just once. A 60-minute wait for a 60-second ride on Dumbo was reduced to ten manageable minutes. I did feel a pang of guilt, though, when they escorted her through the throngs of tired screaming children and put her hand directly into Mickey Mouse’s.
Suddenly, two or three Disney employees dashed out with cameras and began snapping my daughter in the arms of Mickey. When I questioned them, the girl took my arm and said with great compassion, “It’s OK, we do this for all our special children…”
“Oh, My God,” I whispered to her dad,”They think she’s dying!” I lived in fear that her picture would be up on some wall and if we came back the next year with our still-living child, we would be ousted from the House of Mouse for all eternity.
Fortunately that was not the case, or Sarah had changed sufficiently by her next visit and passed unnoticed by her own picture. At eight, Sarah was now able to ride Space Mountain numerous times. Her mother sadly was not up to the challenge and lagged behind with a forced smile. As she zipped through the line, patrons began yelling at her and I struggled to catch up while assuring the angry patrons that she was not breaking any rules. If looks could kill, Goofy would be sweeping up the remains of both of us.
Disney World was indeed a magical place for Sarah, but at eight she still had issues with fantasy and reality. She had a few street smart friends in grammar school, who tried to give her the skinny on Santa Claus, the Tooth Fairy and the Easter Bunny but she would have none of it. Her argument was always that her mom was broke and couldn’t possibly have the money to provide the wealth of goodies that appeared every holiday. She was right, of course, but I did start Christmas shopping around June, ferreting away treasures in nooks and crannies all over the house. By the time Christmas rolled around, I always forgot I had acquired so much. I never learned from my repeated mistakes, thus the sheer magnitude of Sarah’s gifts was pretty mind-blowing.
Now here she was, being treated like royalty because of a special need she had not-as-yet been told she possessed.
We did try to bring things to her attention at the time.
I noticed how large the Chip and Dale chipmunks were at the nautical themed restaurant we were patronizing. “That’s because if they were regular size, people would think they were mice and not want to eat here,” Sarah said, matter-of-factly. That there were actual people sweltering inside those chipmunk outfits was simply unthinkable.
The next morning found us at a Winnie the Pooh character breakfast. Getting Sarah to eat was so much easier on vacation, though she still refused to eat anything in the shape of anything living. This meant she would eat burgers and steaks and lobster galore, but not a teddy graham or a gummy bear. The Disney waffles in the shape of a Mickey head were definitely out.
Sarah piled her plate with everything she loved and was eagerly awaiting a visit from Pooh who was making his rounds at the table. Suddenly, she spotted Piglet coming her way.
“It’s Piglet!” she shrieked, “Hide the bacon!” She threw a napkin over her plate as Piglet approached.
“It’s Tofu bacon!” Sarah blurts out, as guilty as if she had just been caught shoplifting at Tiffany’s. She thrusts the plate in my direction. “It’s my mom’s bacon,” she sputters, clearly terror-stricken.
Piglet lifts both his hands to his big foam head and reacts in mock shock, moving his head from side to side. I could only think, “Fuck you, Piglet” as I knew our lovely breakfast was now finished.
Sarah’s suspension of disbelief has never left her. It has become part of her charm. It’s why she could watch the Disney theme park production of “Beauty and the Beast” with a ridiculously flamboyant prince who was clearly more interested in Lumieire than Belle, and weep piteously as he lies dying, knowing full well he will be singing the title song, alive and well, in about 40 seconds.
It’s why she cried as much the first time she saw “RENT” as she did at the tenth viewing. She knows there is a happy ending, yet she is so invested in the story, she sees it for the first time every time.
“The Lion King” movie was almost too much for her to bear. This death was neither justified or reversible. We watched this unfold in the movie theater and her sobs were so audible and so prolonged, I wanted to leave the theater, but Sarah adamantly refused. Grabbing at napkins with her greasy popcorn fingers, she dabbed her eyes and swigged her Coca Cola to try and abate her convulsive gasps.
When the film was over, Sarah asked to see it again, but neither her dad nor I had the emotional capacity to withstand another go-around that day.
Our Disney collection continues to grow and the only difference I see, now that Sarah is an adult, is that she is as invested in the actors that voice the roles as she is in the animated characters themselves.
Seeing “First Date” on Broadway took on a whole new significance when Sarah realized its star, Zachary Levi, was the voice of Flynn Ryder in “Tangled.” The reverse was true as well. Sarah’s love for “The Book of Mormon” remains unsurpassed at this juncture. Finding out Josh Gad voiced Olaf the snowman in “Frozen” brought her unmitigated joy.
Although Sarah now questions the message and the choices made by women in Disney films (she is completely appalled that Ariel would give up her voice for a man or that Belle would become a victim of Stockholm syndrome after living with the Beast), she still is committed to them and is more than willing to spend a weekend reliving her childhood and my own.
Despite some sexist assumptions, Disney films still offer the hope of happy endings and empowers the underdog to attempt to the impossible. For families of children with special needs, we live the impossible dream every day. A little hope and some pixie dust does wonders for our morale most days.
And on the days – and there have been many – when i have felt exhausted and defeated, there was one thing I could be sure of. If a Disney film was on, I was guaranteed time to take a shower with compete faith that Sarah would not leave the couch. To quote “The Jungle Book,” The bare necessities of life will come to you.