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Tuesday, September 24, 2013 9:03:00 AM

By Shannon Penrod

 

The first time I took my son to Disneyland it was magical.  He was not yet 2 years old and I remember watching him skip through the park and thinking, “This truly is the happiest place on earth.”  The second time we took my son to Disneyland was one of the worst days of my life.  It was about a year later.  A hellish year, during which my son had regressed into Autism.  We tried to recapture the magic of that first trip but it was like being in a car accident, in slow motion, with no promise of an air bag.  We lasted about 2 hours and ended up leaving the park in tears.  It was before I knew there was something called a “Guest Assistance Pass”

It was to Storybook Land Canal Boats in Fantasyland that made it clear to us that we weren’t going to be able access the magic.  We had stood in line for a harrowing 45 minutes, attempting to keep our child contained; he kept wriggling out of my arms and ducking under the ropes, diving between people and one time almost made it to the water.  I held him closer and was bitten.  My husband and I took turns trying to get his attention so we could entertain him.  He wanted to run to the boats.  Try explaining to a 3 year old with no receptive language skills that he needs to wait.  Try.

Forty minutes into our wait for the “fairytale” ride, my husband and I were exhausted, injured and demoralized by the disapproving stares of the people around us.  My son had started to make a high pitched keening sound to sooth himself and it was driving everyone in line crazy.  We tried to quiet him, but it was like taking away a pacifier.  Eventually, he had had enough and in a violent fit to get away from me he kicked the little girl in line behind us.  I apologized profusely.  It didn’t matter.  Everyone looked at my child as if he were a monster and we were the bad parents who had created him. 

I wanted to run away, but we couldn’t!  We couldn’t even make an exit because we were trapped in the maze of people waiting to get on the ride.  I have never felt so helpless in all my life.  Fate intervened and in that moment they announced that the ride had broken.  We all needed to leave the line and come back another time.  There were groans of frustration and even some children who cried, but the line began to dissipate.  My son was thrilled!  We were moving and he was no longer stuck.  I felt so much relief…until he realized that we were walking away from the boats he so desperately wanted to ride and then he became hysterical.

It took my husband and I twenty minutes to get our son away from the boats and out the main gates.  We were both bleeding from scratches, kicks and blows to the head.  We waited another 10 minutes before we even attempted to get on to the tram to the parking lot. I remember driving out of the parking lot and feeling like there was no part of my life that was ever going to work again.

I told a friend about our trip to Disneyland and that was when she told me about “the pass”.  Of course I am referring to the Guest Assistance Pass that Disneyland provides for visitors who have special needs.  My friend assured me that there was no way to do Disneyland with a child on the Autism spectrum without the pass.  I knew this to be true.

The third time we took my son to Disneyland we got the pass and it changed everything.  It gave us the opportunity to wait in a line that was often shorter, although not always, without having to be hemmed in like cattle.  Depending on the ride we would sometimes be asked to wait in a special area that was more open, or we would be ushered to a separate gate where we had more time to board the ride without slowing other guests down.  The pass made it possible for us to enjoy the park.  We could be a family on vacation.   As our son began intensive therapy we found that 4 hours was the maximum amount of time he could be at the park before he would reach sensory overload.  With the pass we were able to enjoy the park for 4 hours and then go home.  We bought season pass holder tickets and Disneyland became my son’s reward for doing good work.  In Kindergarten he received a special token for everyday he did a good job and we promised him that if he got 42 tokens we would take him to Disneyland.  The pass made it possible for him to fully enjoy it when he finally got 42 tokens!

People have asked me over the years how my family survived those early years of autism and I always tell them. “Good ABA therapy and many trips to Disneyland!” I don’t know what we would have done if we hadn’t been able to have those happy days where we could just be a family having fun.

I was crushed to find out the other day that Disneyland has decided to do away with the Guest Assistance Pass.  In light of the news coverage detailing the way wealthy moms were paying guests with disabilities to help them get their children on rides quicker, the decision was made to do things differently.  It has been reported on multiple sites, but Disney has not yet confirmed, that there will be four different kiosks throughout the park where you will have to stand in line to get a fast pass for a specific ride, one ride at a time.  The pass will allow you to get in a shorter line to access the ride after a period of time has passed, during which time you cannot have a pass to any other ride.

I keep picturing taking my son to the Storybook Land Canal Boats and telling him that we need to walk someplace else to get a ticket for the ride, then having to wait in line there, then go back to the ride and wait some more.  It is a cruel, nightmare scenario for any child, let alone a child with ASD.  I want to cry for every mother of every child with Autism who has been robbed of the magic of taking their child to Disneyland. 

If this is indeed the new plan it feels like a knee jerk reaction from someone who has no knowledge of what the world looks like for an individual with Autism.  In one fell swoop Disney will have gone from being the “Happiest Place on Earth” for all our kids to being one of the worst offenders of failing to see our kid’s perspectives.

I’m confident that the folks at Disney are aware that the newest CDC numbers estimate that 1 in 50 school aged children is on the Autism spectrum.  They have said time and time again that they have the interests of all of their guests at heart.  Will that be true now?  It’s important to let Disney hear our children’s cries! How many pairs of mouse ears does it take to be heard?  I don’t know, but I think we should find out!  If you would like Disney to reconsider its new guest assistance policy sign the petition here.

 

Shannon Penrod is the Host of Autism Live an interactive, online video podcast that provides news, resources and support for parents, practitioners and teachers working with children with ASD as well as individuals on the Autism Spectrum.  Her son was diagnosed with Autism at the age of 2. Visit www.autism-live.com to view the show and interact with Shannon and her guests.