Just Get Out

As I’ve mentioned before, this is a year of “lasts.”

Two weeks ago, my family, including my aunt and my mother, flew to Florida for our last semi-annual trip to Disney and Universal. We have been going every other year for ten years, but two years from now my youngest has the audacity to want to go to college, so this was the last time we will participate in “Jersey Week” at Disney.

We definitely finished on a high note.

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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 of course 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 people, 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 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, watching my husband run to the future disability ride to book a time, then hustling back to meet us at our fast pass ride all day long.

At least he got his steps in.

I’ve always said Disney is a working vacation, and it is. 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, I will never get back, as grateful as I am that the system exists. Figuring out why the only time Justin tried to elope anywhere was to FutureLand, for a pretzel, and making sure we didn’t lose any of my family members while in hot pursuit. Sussing 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 are scheduled to go Justin picks out the scrapbooks with the Disney trips in them, and starts playing his Disney DVDs as soon as school starts up again.

Without us even saying anything, he just knows.

We will figure out a way to get him there in the future, which will be challenging, as 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 them when I was much younger.

Taking 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.

Participating 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.

Having the staff at his school work 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 permanantly 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, for my aunt for helping us out this year when I couldn’t attend the entire trip.

Grateful to all the many people who helped teach Justin the skills he needed to enjoy and remain safe.

To Disney and Universal for making the parks more accessible to children like my own.

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.

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 as we go over our trip.

I will ask him if he had fun.

He will give me the slightest nod, yes.

He may gift me with a smile.

He was worth the work.

Happy Thanksgiving to all!

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