My parents took our family to Disneyworld this year and it was a well needed break for us!! We had many highlights, like finding out Justin LOVES roller coasters!! And I mean love!! He would bolt to get in line to go again and we had to keep a close eye on him to catch up!!
But we also had some serious lows on the trip. We are well accustomed to altering our expectations on vacations or any other outings, and so we usually expect nothing and celebrate any small success—even if it means we only stay at the park for a couple of hours, or even minutes!! If they were good minutes, then we are happy!! But Justin was just “off” this trip, and it didn’t seem to be triggered by change of scenery or schedule. Those things CAN be a trigger, but he was crying like he was in pain when we got to Florida—and it just seemed different.
Justin did great the first day, and then woke up sobbing the second day. So my dad stayed at the hotel with him while the rest of us went to Disneyworld. Thanks Dad!! I hate separating my family, but it helps Justin and everyone else to give him some space and just take it easy sometimes.
We called my dad around lunch time and Justin was doing better so he decided to bring him to the park and meet up with us. My dad rented a double stroller for Justin so that he would have a “safe place” from all the crowds and a resting place from walking and transitioning.
Justin was doing well, so we started going on rides. We love the Special Accommodation pass that Disney has for children with Autism, what an awesome idea to help families accommodate for long lines!! It was working perfectly,, so we just kept hitting the rides. At some point, some of the kids needed a potty break, and the others needed food and somehow Justin and I accidentally got split up from everyone else—without my purse, or my CELL PHONE!!! And then Justin started to whine and I could tell there was a meltdown brewing!! Yep, just me and Mr. Justin—in a sea of a million people and no way to reunite with my troops!! We went on the Winnie the Pooh ride, and then paced looking for family—which can only last as long as I am pacing “correctly” for Justin, which I evidently was not doing correctly enough because he started grabbing me and trying to turn me to walk a certain path. Luckily, I coaxed him into sitting on a bench. A sweet mom with 4 kids came and sat next to me, and there wasn’t enough room for her kids. I looked at her and with a nervous voice said, “I am sorry I can’t ask him to move over for you guys, he has autism and that might set him off and my family left me without a cell phone and I am sweating bullets because he is just about to have a meltdown!!” Have I mentioned that I talk A LOT when I am nervous?? I am surprised she didn’t get the whole family history from me… She handed me her cell phone to use—hooray for nice people in the world!! And right at that point Justin lost it and started pulling out of my hand grasp…I just managed to quickly blurt out at my dad on the other end of the cell phone to come quickly back to the Winnie the Pooh ride!! Note to self—NEVER leave cell phone behind!!
We did meet up with everyone else and were able to go on several other rides and have a good time. The best experience of the day, by far, was BIG THUNDER MOUNTAIN!!
It has always been my favorite ride, and now it is Justin’s too!! My husband and I took him on the ride together and captured this sweet picture!! He was grinning from ear to ear the ENTIRE ride!! We laughed and squealed and it was honestly, a little piece of heaven!!
My parents took Justin and Little Miss to go ride the carousel while my husband and I took care of another family emergency—my baby girl decided to have the worst diaper blow out ever, right in the middle of the park—and we had nothing to clean it up, no extra clothes, no diaper wipes!! Good times!! And in the midst of cleaning up that disaster, I got a phone call from my mom that Justin was in a store having a meltdown and wouldn’t get up off the floor. Oh no!! I started running to meet her and help and my husband was trying to catch up behind us with the double stroller. I finally reach the carousel and I can hear Justin screaming but I can’t find him. I rushed towards the noise and found him in a store with my dad and a sweet friend of ours, frantically unwrapping suckers trying to calm him down. Our friend had brought the double stroller into the store to try and talk him into sitting and calming down. He finally sat down, still whining and screaming, and we were able to wheel him out of the store. My husband and I knew that we had reached that point where we were now treading on Autism’s “thin ice” and we needed to get out of the park quickly!!
By this point, it was dark and the firework show was about to start. We knew we needed to get out to the monorail before we got caught in any crowds or lines for the monorail!! We rushed back to the front of the park, weaving the strollers in and out of people and then as soon as my husband returned the rented stroller….Major meltdown began!! Justin laid down on the sidewalk and started screaming as loud as he could and when my husband tried to pick him up he just went spaghetti and started wailing louder. He refused a piggy back ride, which usually helps in these situations. Not this time—he didn’t care. My husband rushed him out of the park gates and Justin was hysterical at that point. I made him stop outside and try to “work through it” instead of picking him up and carrying him, only because I have watched our therapists do this with Justin because they can’t pick him up all the time. It usually takes an hour, but we get through it instead of just having him scream the whole time.
I parked my toddlers who were strapped in the double stroller by a nice lady who was holding her toddler and said, “I know this sounds funny, but can you watch my kids for me so I can-” She cut me off and said, “ABSOLUTELY!” I walked 15 feet over to where Justin was screaming on the cement and tried everything to get him focused on a goal and get him calmed down. Nothing worked. iPad, iPhones, candy—he didn’t want ANY of the normal bribes. He was so hysterical and he just looked so anxious and terrified in his eyes. It broke my heart.
After a few attempts, my husband panicked, thinking about the massive crowds that were just about to exit the park because the firework had just started—he picked up Justin and hauled off for the quarter mile walk uphill to the monorail and looked at me and said, “Let’s GO!” I could feel the tears coming and tried to hold them back. I went and told the sweet mom who was keeping an eye on my kids, thank you, and managed to blurt out the plea, “Say a prayer for us!” She said she would and then said, “My nephew has Autism too, and it’s so hard—my hats off to you guys as parents.” Well, that’s all it took for the waterworks to start flowing for me, and within seconds I was a complete mess and bawling as I am running with the double stroller and trying to push this stroller uphill and catch up to my husband and Justin, whom I could STILL hear screaming. I approached the monorail and asked the man at the door, through my sobs, to please help me lift my stroller because my husband was busy. I boarded next to them—Justin now in a very confined space, plugging his ears and trying to wriggle out of my husband’s arms and screaming at the top of his lungs. And I just looked at the ground and sobbed quietly. I was so overwhelmed not being able to help Justin and seeing him so upset!! It was super quiet on the monorail, and I could tell that many eyes were on my family. But not in a mean way, but it that nice way of everyone respectfully glancing towards us to see if they could catch our eye contact and smile or offer help. And then as I tried to calm down and verbally comfort Justin, everyone on our monorail tram started offering words of comfort to my husband and me. They ranged from telling us they understood because they had a family member who was a special needs teacher, telling us not to worry about his screaming because it wasn’t bothering any of them. Their kindness was so great that it was overwhelming—and it started to replace my overwhelming worry, and the tears of gratitude came immediately.
I was so MAD at Autism right then—mad that its crazy rules and regulations, of only which my son knew the bounds of and fought against daily, were over powering the sweet boy who was having such a great time earlier. And being mad at Autism is obviously a no-win situation, because Autism isn’t going anywhere!! I was still mad. I kind of hoped someone could be a jerk about the situation so I could be mad at them instead of Autism—that would’ve been easier, but it wasn’t what I was supposed to learn from the experience.
Justin all of a sudden wanted to sit on the bench, and there was no room. The dad next to Justin lifted up his toddler and quickly put him on his lap leaving a space for Justin which he immediately slid into to. And then out of the blue, something very strange happened. An older, somewhat peculiar man, who was sitting next to Justin, started talking to him. At that point, Justin was literally screaming in his face while plugging his own ears. And this man seemed quite oblivious to all of the craziness and begins to pull out a stamp collection book and starts telling Justin all about his stamps he’s collected for years. Inside I was thinking, “Are you kidding me??” It only took me a few minutes to realize after observing this man, that he quite possibly had a form of Autism himself. I looked at him, and then at Justin next to him and it just became so overwhelmingly clear how mortal we all are. Justin and that man had the same battle in this life, clearly different levels, but they were both still children of God who came to Earth to get a body and both their bodies had Autism to struggle with. Then it hit me, that none of this mattered, not the tantrum, not the struggles, not the oddities of the older man—none of it!! It was just one fleeting, unpleasant moment that would soon be forgotten. I realized that we are all here in this lifetime for such a short amount of time and it doesn't matter how different we are, it's just how much we love each other through our differences. Justin finally stopped crying before our tram stop, and then the older man looked up at me and said, “I’m sorry if my talking bothered him, I can talk a lot.” I told him he made me stop crying and he reached out and awkwardly rubbed my shoulder and told me he and his wife love the parks and have been coming for years. Then he wished me a good night and that the kids would sleep well.
We were all so tired that everyone slept well that night!! I am so grateful for the blessing of feeling my Heavenly Father’s love through the thoughtfulness of others. It carried us through that night and helped remind us of all the greater moments we had enjoyed earlier in the day!!
Moral of the story—Justin LOVES roller coasters, and therefore I will love roller coasters, including the roller coaster ride of Autism!!