There were some years with some definite low notes.
On our first trip, Justin, our now twenty-year-old profoundly autistic son, wasn’t feeling well, and his behavior was challenging. I will never forget how we pulled in to my mom’s after our return flight, and Justin emitted his loud, hi-pitched “eee” sound with a smile,
ecstatic to be home, and my six-year-old burst into tears, because we were home.
Yin and yang, yin and yang.
There was the year, five adults managed to be so distracted, that the two boys wandered off, with my sister-in-law discovering them minutes later staring at the water gushing down from Splash Mountain, and my youngest telling me afterwards that he saw Justin head off and “just took his hand to stay with him so he wouldn’t get lost.” Good times.
In the good old days, I watched my husband run to the future disability ride to book a time, then hustle back to meet us at our fast pass ride. He would do this all day long. At least he got his steps in. In the old days at Disney, once you finished one ride on your disability pass, you could run ahead and book the next one, and you had to physically do this at all the rides. In between, you could use the three “fast passes” that Disney gave you free with each ticket. You either had a bracelet or a card that was scanned at each ride for both.
Now those free fast passes are gone. You have to purchase passes if you want to skip the lines on a few rides, and you have to book your disability rides on your phone. You no longer do it physically at each attraction.
I’ve always said Disney is a working vacation, and it is. I will never get back the hours I’ve spent trying to acquire the disability pass and requisite passes to daily rides (a system which seemed to change with every trip, as grateful as I am that the system exists); or figuring out why the only time Justin tried to flee anywhere was to FutureLand for a pretzel, while making sure we didn’t lose any of my family members while in hot pursuit; or figuring out the particulars of the DAS on our phones; or making sure we didn’t lose any of our cards in the old days, so Justin wouldn’t have a meltdown if we didn’t get on a ride.
Was every second of aggravation worth it to create indelible memories with my family on the only vacation my eldest would ever tolerate, and actually enjoy? Absolutely. Every fall that we were scheduled to go. Justin picks out the scrapbooks with the Disney trips in them, and starts playing his Disney DVDs, as soon as school started up again. Without us even saying anything, he just knew.
We will figure out a way to get him there in the future, which will be challenging, since when he (hopefully) enters a day program after graduation in June he can only miss a certain amount of days, but we will work it out.
The truth is a tremendous amount of work went into creating an environment and a set of circumstances that enabled our son to be able to go on this vacation, and I’m glad we accomplished that when I was much younger.
We took Justin to the boardwalk and other venues to teach him how to wait on line, because no matter what advantages you have, at Disney you will still wait on line.
We participated in a fabulous program with American Airlines, where Justin, my mom, and I went through every aspect of a flight except an actual flight, before Justin’s inaugural takeoff to Disney.
The staff at his school worked on a “wait” program with him.
It all paid off eventually, and I have been able to take my son on a two-hour round-trip flight, six times to a crowded destination where he sometimes had to wait an hour for a ride, and despite his penchant for carbs, we never permanently lost him. A win for all.
I am so grateful to my mom for underwriting so much of these trips for us, all these years, and for my aunt for helping us out this year, when I couldn’t attend the entire trip.
I am grateful to all the many people who helped teach Justin the skills he needed to enjoy and remain safe and to Disney and Universal for making the parks more accessible to children like my own. I have much gratitude to be privileged enough to take my kids a half dozen times to the “happiest and most expensive place on earth,” and have it be a safe and pleasurable trip.
I am grateful to my eldest son for being able to handle such a venture, so my hard-working, wonderful boy will always have memories of family vacations, just like other adult children do.
I know not all families will be able to go on such a grand venture, even once with their profoundly autistic children. I am well aware of how fortunate we are.
But my point is this. It doesn’t have to be Disney. No matter how difficult it is, and it will be difficult sometimes, get your kids out in the world, have them wait on lines, expose them to times when a ride is broken or the weather turns bad, or something happens and you simply have to leave a venue early. Do it while they’re young. Get these challenges in their repertoire, get overcoming disappointment in their repertoire, and do it while they’re small enough for you and/or another person to physically carry them out if necessary.
If you can, do the work. Ask for help from their school. Ask for help through Performcare, as I have, or engage RBT/BCBA services through your insurance. Just get out.
After I find the time to relegate this excursion to the most current scrapbook, my son will pull it out periodically, and we will sit together and go over our trip. I ask him if he had fun. He will give me the slightest nod, yes. He may gift me with a smile. He is worth the work.
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty is mother to two sons on the autism spectrum, and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of Raising Autism: Surviving the Early Years, which is on sale at Amazon. https://autismmommytherapist.wordpress.com/me-and-my-blog
Read the article here.