For those unfamiliar with the challenges of dealing with disabled or mentally retarded children or young adults some of whom are on the Autistic spectrum, permit me to paint a picture for you of what I and parents like me deal with on a day-to-day basis.
For many Autistic children and young adults, routine is everything. Routine helps to ground them and keep them calm. Disruptions in routine can often result in heightened anxiety and for some, aggressive or anti-social behaviors, and meltdowns. And heightened anxiety can occasionally result in seizures. Many on the Autistic spectrum do not handle disruptions in routine or changes in their immediate environment well. As it is said of the rich, Autistic folks are not like you or me. Tonight, for example, my son insisted on a certain set of sheets for his bed when his caregiver and I were trying to make it. They must be the light blue sheets and not the light green sheets of an identical finish. And he was insistent enough about this to push his heavier set father all the way down the upstairs hallway toward the linen closet until he got his way. He is quite strong. Unlike the rooms of other teenagers or young adults, my son's has plywood sheets nailed to the drywall. This prevents him putting his foot through the drywall that he has done on too numerous occasions to count. So, tired of constantly doing drywall repair, the plywood has come in quite handy though not terribly attractive.
Some Autistic children and young adults also engage in self-injurious behaviors like biting their hands or head butting walls when they are frustrated. Some have OCD (Obsessive Compulsive Disorder) and will pick at things constantly. My son has pulled out sutures on lacerations and removed entire toenails.
On at least three visits to Disneyland between the ages of eleven and thirteen my son kicked the shins of other children, innocent bystanders, at the park because he had lost his patience waiting in line. Needless to say on those occasions, after apologizing profusely to the injured parties and their parents and hoping not to hear threats of lawsuits, he was immediately taken home. Rewarding such behavior is not tolerated. A continued stay at the park would have been a reward. Bad behavior, as with any child, should have consequences. But with many Autistic children, despite punishments, time-outs, repeated reprimands and scolding, such extreme behaviors will persist.
A few days ago, I got wind of a new disability policy being instituted by Disney for its theme parks because some park goers were apparently scamming the system by pretending to be disabled when they were not. I also heard that many parents of Autistic kids, in particular, were dismayed and upset about the new untested policy. As a Disney devotee and Premium Annual Pass holder, I reserved judgment and gave Disney the benefit of the doubt, until today.
Allow me to place a few more dabs of paint on this canvas I'm painting. About two weeks ago, a slab leak in my home occurred much to my dismay. For those in older homes on raised foundations, a slab leak occurs when a water pipe in or under the concrete slab upon which a home is built springs a leak or bursts forth. Slab leaks can be localized to one part of a home or if undetected can ruin an entire foundation. I woke up on a Sunday morning two weeks ago and heard a gurgling sound in the living room and watched in shock as water poured forth from the baseboard onto my beautiful dark hardwood flooring. The leak may have been occurring for a few days in a more subtle way, because my insurance company has determined that my living room and entryway flooring and half of my kitchen are a total loss are now about to be demolished, treated and rebuilt.
As a single father of an Autistic son who has slight mental retardation and who is speech challenged, only able to speak in very fragmented sentences but still at this age, unable to carry on a conversation, and now who tips the scales at 185 pounds and is an inch taller than myself, I had to explore and weigh my options. Could my son tolerate the constant noise and disruptions of loud humidifiers and driers and crews of workmen coming in, from his perspective, to deliberately destroy a good portion of his home? What were my alternatives?
Temporarily place my son in a group home some 30 miles away and close to 40 miles away from the college where he is part of an adult transition program?
Would he understand why he couldn't live at home?
Would he, despite my attempts to reason with him, comprehend that this would only be a temporary arrangement? And not a punishment for some unknown transgression? Not likely.
Would my insurance company be willing to place us in an extended stay hotel for the duration of the demolition and rebuild of much of the downstairs area?
Would he act out at the hotel and kick the walls or destroy some of the hotel's property out of frustration that he couldn't be home in his room, his sanctuary from the confusion and chaos of the outside world? Was I willing to risk that?
Would I need an extra caregiver to stay over at the hotel to help keep him in line?
In the end, I opted to keep him at home, despite the noise and disruption to his routine and try to get him out of the house as much as possible while reconstruction was happening at the house. As I write this, my living room and entryway flooring has been removed leaving the bare cement slab. Furniture and the home entertainment center are stored in the garage and a large plastic curtain has sealed off half of the kitchen. My dining area now includes an open-air pantry of assorted canned food, boxed food, cat food, cereal and the new temporary home for the refrigerator. Kitchen appliances are typically more amenable to disruption and relocation than Autistic young adults.
So, today (a Saturday), I decided that a good change of pace for my son would be to visit Disneyland, one of his favorite places since he was a toddler, because I knew workmen would be by in the morning to seal off half the kitchen and possibly engage in tearing out cabinetry from the walls.
I ventured forth to Disneyland with my son and one of his caregivers, in this case a young energetic woman in her twenties who is adept at redirecting and calming my son as required. Visiting Disneyland with my son but without a caregiver or another alert and physically fit adult is not a good idea. Years ago, when my son's Autistic behaviors were noticeable, behaviors that included tantrums, meltdowns, kicking, running away, hand-biting, and incessant screaming, we discovered that Disneyland offered what was known as a Special Assistance Pass for those park patrons with family members who were disabled. The pass was issued at City Hall in Disneyland and the kind folks behind the counter never asked for proof of my son's disability but had they ever done so, we would have been more than willing to provide it. Of course, his behavior and unfocused, uncontrollable demeanor were obvious signs that something wasn't quite right with him as he attempted, often unsuccessfully, to patiently wait while the pass was being issued.
The pass permitted disabled children and adults and their families or caregivers the opportunity to access Special Disabled entrances on various attractions and rides and thus avoid the longer lines that other patrons are required to stand in. For many of those more normal patrons, I'm sure their eyebrows were raised a bit when spotting my son, who from a distance had the outward appearance of a normal child and later teenager or young adult. Of course, today there are not many 6 foot-one, 20-year-olds who are insistent about riding the boat through It's A Small World or sitting in the lion's cage train car of the Casey Jr. train or making their pilgrimage to visit Mickey Mouse on every visit, attractions more frequented by much younger children and toddlers with parents than teenagers or young adults. And not many patrons were aware or had the opportunity to witness some of my son's more extreme behaviors. He has connected with an occasional punch to my face or kick to my ribs, something that in the last few years is more rare, thankfully. For parents with Autistic or mentally-challenged children who cannot be reasoned with, the Special Assistance Pass made Disneyland a pleasurable experience. Gone were the meltdowns, the kicking, the screaming, the hand-biting and the kicking of other park goers. And even with the pass, there were occasional waits in line of a half an hour or more but they seemed tolerable. This has changed.
Now families with family members with disabilities, like my son, who is severely Autistic and mentally retarded must scour the park for newly designated Guest Services locations to have a park employee let the family group get access to one ride at a time for waits that can be as long as 80 minutes or more. For each and every ride, the special needs family must hunt out and find the Guest Services location – there are only four in Disneyland and four in the adjacent California Adventure. Only one ride option is granted per request. So, half of the visit to Disneyland is taken up with constant returns to these Guest Services locations once found (and they are poorly marked), requesting access to a ride rather than enjoying more of what the park has to offer.
Explaining this new procedure and the wait times that can be in excess of an hour to an Autistic child or young adult without the intellectual capacity to understand can be a tense and frustrating experience and something that I question whether anyone in the brain trust at Disney ventured to do with any special needs or Autistic children or young adults themselves before instituting the new policy. Walking in the shoes of a parent of an Autistic child with Disney's new policy will require a substantial amount of new additional walking — much more walking to find and request special access than ever before. And sometimes only to find that rides require an inordinate amount of wait time after the request has been granted.
Prior to this new scavenger hunt, we entered the Disneyland gates and headed to City Hall to see how the new process would work. There were three lines outside City Hall. None of them marked with any designation. After about 20 minutes, we were informed that we had been standing in the wrong line. After finally being granted the opportunity to learn about the new system, which was still a bit incomprehensible, we decided that we had no choice but to give the system a try and soon found that in order to ride more than one attraction in one part of the park we had to spend half of our visiting time circling back to one of four Guest Services booths to allow the park employee to handwrite the name of the ride and the time we were permitted to go to the attraction.
Please keep in mind, that Disney, so determined to curtail fraudulent abuse of special needs access, still doesn't require that proof be given of a person's disability. So, scamming the system is still quite possible and I'm sure occurs despite the new policy. In fact, many of the complaints that led to the new policy were aimed specifically at those park goers who entered the park in wheelchairs pretending to be unable to walk. Wheelchair-bound attendees, whether truly disabled or faking it, are still able to go right onto to any ride while Autistic children and young adults must use the new longer-wait access system. So, it's not clear to this writer, at least, how the new policy is designed to curtail fraud when many of the abusers can still fake a physical not mental disability. Disney's new disability policy doesn't address this in the least.
At the end of our visit, my son was only able to go on three rides. One ride was shut down while we waited, another was an hour and twenty-minute wait that we opted not to wait for on the thought that my son would become aggressive, and another favorite exhibit was shut down. In between looking for Guest Services booths, we walked and walked and walked some more.
Unless Disney revisits its new disability policy, we will have to get used to doing more walking and less riding on the attractions. I realize that some of you reading this may be thinking, "Cry me a river. Tough luck, chum. Now you have to do what we all do." And honestly I can understand that sentiment. Perhaps people with special needs should be treated like everyone else anyway. Perhaps we've been too lenient in America giving special treatment to those with special needs. I also get frustrated with the number of unused handicap parking spaces outside of shopping centers and grocery stores. Even though I'm entitled to get a handicap placard for my car because of my son, I've chosen not to because he can walk through a parking lot like any normal person. But if more public attractions like Disneyland decide to implement a policy like Disney has done for its theme parks, my guess is that ironically, the disabled will be more visible not less. You will see more Autistic children and young adults acting out and causing havoc. And who knows, maybe that's a good thing that can bring heightened awareness to the disorder rather than simply assuming that these kids are just like you or me. But some of you may want to take to wearing shin guards while waiting in line. Just saying.