November 20, 2013

Disney Revisited

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 10:25 am by autismmommytherapist

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Last week I wrote about my family’s first vacation ever, which happened to take place in Disney World. I spoke briefly about our experiences there, and talked mostly about Disney’s new Disability Service Access Card (DAS card), and how the system needs to be improved to accommodate all families with children with special needs. As I indicated last week, the new program worked for us. I am certain however it would now preclude some families with autistic children from taking a trip to Disney, or would simply make it prohibitively difficult to attend.

I’d like to share with you that I did eventually get off “hold” with the corporation and was able to speak to a live person, who actually listened to my concerns, took my suggestions, and indicated the possibility (again, I stress the possibility) of accommodations being made in the new year on a case by case basis. I’m not sure if this will come to pass, but my fingers are crossed, and yes, I’ll be calling them back down the road (squeaky wheel and all that jazz…).

So, while I wrote a lot about the new disability program last week I didn’t tell all of you much about our trip or share photos (trying to keep the kids alive is not conducive to picture-taking, had to wait for my sister-in-law’s fabulous zip file). I just want to go on record as saying I have never been more proud of my eldest son, who unfortunately caught a bug the day we left for Florida, but was a trooper none-the-less.

This same ten-year-old child who had never flown before and has spent a total of three nights away from his bed in the last seven years flew the friendly skies like a champ, and slept through four consecutive nights (a fact for which his mother is eternally grateful). Although it was quite clear he wanted to go home (grabbing my face frequently and saying his approximation of the word was a good clue) he hung in there, and when he began to feel better he clearly liked the rides, and even enjoyed a few of the attractions.

I’ll admit, he seemed the happiest on the morning I started packing, but I’m hopeful that now he has Disney in his “repertoire” he may enjoy it more when we go back, which I hope to do in a year or two. Justin was basically out of his comfort zone for five straight days, which for him is an incredibly stressful situation. He was so brave, and I’m so grateful he was, for this enabled our family to truly partake in the magic that is Disney.

I’m including a few photos of our trip. I hope you enjoy them, and if you are a family with a special needs child and are considering Disney as a vacation spot, I truly hope you can make the new system work for you, and that you have a fabulous time!
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My boy was such a trooper…

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Could I be any happier?!

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Zach seeing the castle up close and personal for the first time

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Can’t wait to go back!

November 13, 2013

Disney World, “Autism- style”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:22 am by autismmommytherapist

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It’s dawn, and I can already hear my ten-year-old son with severe autism’s “eeee” reverberate throughout the house, so I hustle faster to quell his enthusiasm just a bit so my six-year-old son with mild autism can get a bit more sleep. I haven’t rested well myself and am already anxious, as this is a day of many “firsts” for the McCafferty clan. Within the next twenty-four hours my eldest son will take his first plane ride, sleep in a bed other than his own (which he has done only three times in the last seven years), and will hopefully be able to break out of his daily routine enough to learn to like Disney World.

I would be lying to you if I didn’t tell you my fingers, toes, and any extremity possible weren’t crossed on all counts.

I will share with you that I’m also worried about the two-and-a-half hour plane rides (and worried all of us, mother, father, brother and entourage) won’t sleep for one hundred consecutive hours. However, I’m mostly concerned about the new program for guests with disabilities, which I’ve heard is fraught with issues for our community.

From what I understand from representatives at Disney, as well as friends with autistic children who have previously visited the park, in the past children with autism and their families were able to gain access to any ride, any time, as often as desired, through the fast pass lane. Unfortunately, this program has since been discontinued due to widespread abuse. I have heard that some families hired individuals with disabilities to accompany them into the park in order to have access to this program. The actions of those individuals was reprehensible, and my only solace is that they hopefully are no longer able to “fake their way” into any of Disney’s rides or attractions.

Amen to that.

Overall I have to say we found success with the new plan, which required us to attain a Disability Access Service Card (DAS card) at the beginning of our trip, a card which would last for up to fourteen days, and work in any of Disney’s theme parks. We were told we could acquire the pass at Guest Relations prior to entering the park, but the line at 8:45 in the morning was reminiscent of a combination of the post office and the DMV, so we chose to circumvent that option. Instead we entered the Magic Kingdom and went immediately to City Hall, where a cute Frenchman immediately accosted us and asked how he could be of assistance.

I admit, the accent threw me for a bit.

Once I got past the “cute factor” I quickly explained that we had a child with severe autism in our family, and presented Justin for inspection. No medical documents were required (in fact, don’t bother bringing any, Disney won’t look at them due to legal restrictions). I held my breath a bit as I wondered briefly exactly how much training Pierre had in recognizing disabilities in children (no, his name wasn’t Pierre, it’s just my favorite French name, bear with me). Our Disney representative literally looked him up and down with what appeared to be quite a discerning eye, then revealed our fate- we too could be the bearers of a crisp green and white Disability Access Card. Justin was asked to pose for a picture (his disdain for this photo opp was readily apparent on the card), then Pierre filled me in on the details.

So here’s the scoop on the new card, some of which my Frenchman shared with me, and some I picked up from Disney employees at various attractions and during a customer service call. The way it works is that one member of the group physically goes up to the ride attraction (they do not have to have the person with the disability with them), and if there is a wait of twenty minutes or less, their entire entourage is granted access to the fast pass lane, with the caveat that the person with the disability must be in attendance.

If the wait is twenty minutes or greater the Disney employee took our card, wrote the name of the ride on the card, and gave us a time to return. The time we received was ten minutes less than than guests waiting in the “regular line” would have to wait. The card worked for every member of our group of seven, although I’ve been told that a larger group might not receive the same courtesy. Disney employees told us that we had up to an hour after our written time to claim our spot, although the website said “times are valid until redeemed by the DAS customer,” and since we were faithfully within the hour I can’t speak to the legitimacy of the website rule. We also were not able to “load up” on times, we had to wait until our chosen attraction was completed before we could be assigned a new one.

Finally, I was also told by the customer representative on the phone that if this hadn’t worked for our family at this time there were “no unique circumstances,” which conflicts with Disney’s website statement that “Disney… will continue to work individually with guests with disabilities to provide assistance that is responsive to their unique circumstances.”

I have to say that the system did work for our family, in part because Justin was under the weather for the first two days of our trip, and as a result was more compliant than usual. Not having to wait in actual lines was a godsend, as it enabled us to feed the boys snacks or hit the restrooms during what generally were twenty to forty minute waits for rides. Justin’s village (comprised of family, therapists, teachers, and aides) have worked very hard with him over the last eight years or so regarding waiting, and between our diligence and Justin’s own maturation process, we did not have any issues between attractions. My mom also downloaded an app where she could see the wait times for any ride in the park at any given moment, so we chose carefully where to apply our next DAS card assignment, and always had a plan.

Let’s just say we’re an A-type family.

Despite Justin’s illness we had a great time. Although he kept saying his approximation of “home” over and over throughout our time there (there’s no place like home) I feel when he was actually on the rides or watching an event he enjoyed himself, and I’m eager to take him back when he’s well and has already had the lay of the land. I consider our trip a success, and I could end this post here.

Except, I can’t.

I can’t end it here, because that would be doing a disservice to many families with autistic children on various ends of the spectrum, because many of our kids (and adults) simply cannot wait. Can Justin make it a half an hour if he’s not actually waiting in a line and is otherwise amused? Absolutely. Could he potentially even make it through waiting a half hour on an actual line? Yes. We all worked hard for him to attain these skills, and we’ve reaped the rewards. But the fact is I know many families who have worked just as hard if not harder than we have, and have not met with the same success.

The truth is, with Justin, we got lucky.

With these changes to the disability program there will be families for whom the magic of Disney now cannot be attained. There are individuals with autism who cannot watch a member of their party walk up to a ride and not be given immediate access to the attraction. There are autistic people who have followed a “Disney routine” for over a decade, a ritual which brings them comfort, which due to the new program will now be denied to them. Regarding this last sentence, I will go out on a limb here and say that some autistic individuals have as much difficulty breaking routine and waiting as other individuals with disabilities have seeing or hearing. These children and adults are not coddled brats. Many have worked on these skills for years, even decades.

Some simply cannot wait. And now that Disney has altered their program so momentously, for some the dream of Disney will now be denied.

I’m a “fix-it” girl, and those of you who have been following the adventures of the McCafferty clan will not be surprised that I have suggestions for Disney, which I will be imparting to a representative just as soon as I’m no longer on hold. I have two ideas which might conform to Disney standards. First, for families who believe they won’t be enjoying any given park for more than three to four hours, create a program which allows families access to the fast pass lane for that short period of time. Second, issue the DAS card, but enable families to also choose a handful of rides each day where they can simply walk into the fast pass lane at any given time, in any given order. This may enable a certain autistic individual to adhere more strongly to a prior routine, or allow families to choose the rides with the traditionally longest lines throughout the park. Either program gives the families the power to tailor their experience to their child’s needs, which at the end of the day, is what living successfully with autism is all about.

There will be people reading this post both within and without the autism community who will think it’s ridiculous to be this fired up about a vacation, particularly when there are so many more pressing problems in the autism world to be addressed. And yes, we still need tremendous reform when it comes to insurance issues, Early Intervention, education, housing, and employment, just to name a few. I concur with anyone who feels these issues should garner our focus and take priority.

But I will finish this post by saying this. Sometimes, autism is not a lot of fun. Many families are struggling on a daily basis with sleep deprivation, eating disorders, medical issues, and behavioral problems, just to scratch the surface. Disney has traditionally been a place where magic abounds, a “respite from life,” a place where dreams come true for many special needs families, even if it’s for a few days or just a few hours.

So my plea to the Disney Corporation is this. Please consider making accommodations for those in our community for whom the DAS card simply will not suffice. Create a system or two that will work with every person on the spectrum’s incredibly individualized needs. Tailor accommodations to each person whenever possible. Listen when we call you and write to you for help. Please, work with us on this, and not because, as some have suggested, we feel we’re entitled to it.

Work with us simply because every family deserves some fun.

App for Disney which enables you to find out wait times for rides: