We’ve had terrific weather so far here in Central Florida. If anything, it has been a little too good. We’ve had clear, blue skies every day, with temperatures persistently hovering around 30°C (86°F). That’s near perfect, but a couple of degrees lower would have made it just that little bit less uncomfortable. Today, the weather forecast called for a good chance of rain, although it was still pushing the upper thirties. We haven’t seen any of the typical afternoon torrential thunderstorms Florida is famous for so far, but let’s see what today brings.
With our theme-park-day routine down pat, it didn’t take a long time for us to get packed and ready to leave the house this morning. Consequently, most of the house wasn’t up and active very early. It doesn’t seem to matter what time the kids settle down for bed; an extra five minutes in the morning is always desirable to them.
The Disney theme parks are about 15-20 minutes from home base here in Davenport, but the Universal ones are farther along I-4, closer to Orlando itself. Without traffic, it’s a 45-minute run. With traffic, that can be an hour or more. It means that grabbing an Uber home isn’t quite as easily done. At Disney, we set out each day safe in the knowledge that any of us might bail on the day and grab an Uber home again. Now with Universal, that dynamic has shifted. We’re very much all in for the day each time we set out. It’s hard to put into words, but this somehow makes the morning departure from the house more of a deliberate and real event, like we’re committing to something more deliberately.
For whatever reason, Joey was not a happy bunny this morning. None of us knew why. Already, I feared, the challenges of the day were being set out before us. The plan was to stop for breakfast somewhere close to the Universal Resort area. That way, we would get most of the journey out of the way before we ate. Forty minutes after departure, we pulled into a Waffle House just around the corner from the Universal parking garages. Thanks to Jae, I narrowly avoided driving into the Planet Hollywood Resort & Casino while blindly following my satnav. I swear I’ve become so dependent on my satnav, I’ve lost the ability to map an area mentally. Without the aid of my trusty maps app, I doubt I’d be able to reverse out of my own garage at home.
Joey chose to sit in the car while the rest of us went in to eat our fill. Despite my best softly-softly efforts, he remained defiantly non-communicative. If I’ve learned nothing else on this holiday so far, it’s that he doesn’t have conscious control over this behaviour, so I didn’t allow myself to get frustrated with him. I had whipped him up some bacon this morning, so he at least had something in his tummy.
Once we were safely parked in the Universal multi-story car park, we walked through CityWalk, then veered right toward Universal Studios, stopping at Guest Services to pick up our disability passes and entrance tickets. Collecting the disability passes was straightforward enough, once we were able to show Joey and Jae’s current status with the IBBCES. That was easily done from the app on my iPhone. Collecting our actual tickets at the next window over was considerably more anxiety-inducing, as it took a while to prove we had bought tickets.
We now each had two credit-card-sized cardboard tickets. One was our park entrance ticket, and the other was our disability ticket. Unlike Disney, the disability tickets were assigned to each person, so we were free to go straight through the FastPass lanes at each attraction on our own. At Disney, the DAS was linked to Joey and Jae, so at least one of them had to be present before the rest of us were allowed into each attraction.
Our first stop in the park, of course, was the giant Universal Studios Store at the front of the park, which conveniently has sections covering all the IPs represented throughout the park. Aren’t I lucky? The theme park operator’s ruthless efficiency at parting people from their money kicked into high gear immediately. A T-shirt here, a cap there, a keychain or two, etc. Before I knew it, I was already about a hundred dollars down on the day’s budget. Clearly, I had to take action to stem the haemorrhaging from my wallet. I casually asked out towards nobody in particular which attraction we should ride first. My tactic worked. We all assembled by one of the many doors, then wandered across the street to the Minions ride building. While everyone was riding, they wouldn’t be spending, or so that was my prevailing theory. As you’ll see later, that strategy backfired on me. The Minions ride was a lot of fun. We all exited the ride in a happy frame of mind. Nobody seemed interested in buying anything when we went through the obligatory ride exit shop, so the admiral restraint demonstrated by my family there was a load off my mind. The real test would be at the next ride building, which was the Transformers ride.
Transformers is one of Joey’s special interests. He has a handful of these special interests, where he has encyclopaedic knowledge of the subject matter and collects toys and accessories at Olympic sprint speeds. While here on holiday, he has been acquiring more and more of the Transformer toys. Some are part of a collection, though I’m having difficulty keeping track of which ones he’s trying to save or acquire. Every time I think I’ve satisfied his current desire, a new one seems to pop out moments after I’ve spent my money buying one for him.
The Transformers ride was also excellent. It’s very much like the Spider-Man ride in Islands of Adventure. You travel on a special motion-ride vehicle along a predetermined track. The ride cars move autonomously, tilting and turning in sync with the 3D imagery displayed on various screens along the way. The combination of the ride car motion and the 3D movies is really quite realistic and impressive, giving you the impression of moving through the movie’s scenes. A few smoke, fire and water effects along the way help to complete the deception.
Out into the Transformers ride exit shop, Joey was like a kid in a candy store. The selection of Transformers on display and available for purchase was impressive—indeed, the widest range I’ve ever seen in a single shop. After a while, it was clear which ones Joey was the most enthusiastic about. You can always tell by the number of times he picks something off the shelf for closer inspection. I had long since committed in my own mind to leave the park today with a few extra Transformer toys. Joey gets anxious if he feels an opportunity to acquire something not otherwise available slips by. After a few probing questions about which toys are uniquely available here, I picked out a couple of mid-range toys for him, much to his delight.
While I was waiting for my turn at the register, Sandy pointed out a promotion. If I bought a gift card and used it instead of paying cash each time, there were some perks available, depending on the size and value of the gift card. There was a free Harry Potter wand up for grabs, as well as a 10% discount on merchandise purchases, etc. It took some persuading from Sandy, but I eventually saw the wisdom and mentally committed to buying a $500 gift card. Essentially, I’m committing to spending at least that much, which is the tactic the park operator is using here. Since we have a couple of weeks to go, with multiple visits to multiple participating Universal theme parks, chances are excellent I’ll spend more than $500 anyway, so it seemed worthwhile to collect the perks. However, I first asked whether the hundred-or-so dollars I dropped in the Universal Studios Store could be reconciled with the $500 gift card if I were to purchase it. That turned out to be possible only at the Universal Studios Store at the front of the park, as it required manager approval. So, off I trotted back to the front of the park to purchase the gift card. I had the receipts I needed, except for the T-shirt Jae bought, which was still in the bag with the T-shirt. Jae still had that with her.
We did a few more rides—Jimmy Fallon’s racing simulator, Revenge of the Mummy’s backwards drops—but Joey was still being sullen and non-communicative. Through trial and error and probing questions, I realised he wanted to go back and do the Transformers ride again.
Having gotten the Transformer’s ride thrills out of our system, we eventually moved on to Diagon Alley. The weather was now starting to look a bit more iffy, but it was still dry. The main thrill ride in Diagon Alley is Escape from Gringotts. It’s a more intense, dark rollercoaster ride that requires you to ride with no personal effects on your body. Wallets, phones, glasses, backpacks, etc., must all be stowed away first, lest you lose them on the ride because of all the G-forces. There are special lockers for just this reason, but stowing our things in them turned out to be a frustrating process of epic proportions.
Firstly, there are two sizes to choose from. The smaller one is about the width of my forearm, but barely tall enough to squeeze my fist into. That was just about big enough for the back of two Transformer toys Joey was carrying. Our backpacks and other possessions would have to be squeezed into one of the larger lockers, but those were one-time-use lockers costing $3 each time you opened them. We’ve already paid royally to get into the park, and it frustrated me no end that we were effectively being charged again to do the ride. Worse still, the locker system refused to take payment from our card. I had to call an attendant to help us sort it out. He saw there was an issue on their end and arranged for us to use the locker free of charge, so that was OK. The next problem was I’d inadvertently left our FastPass tickets in my bumbag, which I’d stashed inside my backpack, now safely locked away inside the one-time-use locker. This meant I didn’t have the right ticket to enter the attraction proper. I had to call the assistant again to help get into the locker and lock it again. All the while this pantomime was playing out, the unnecessarily cramped locker space was filling with people attempting to find refuge from the sudden downpour of rain that had just started. People were constantly bumping into me. People kept bumping into me. I had to raise my voice to apologise and ask people to move out of the bloody way. To make matters worse, there’s an irritating design flaw with the lockers themselves. Each block of around 40-50 lockers has but a single access point, where you use the barcode on your ticket to open one. That means numerous people are jostling for the same spot to operate the damned things. There’s a constant stream of new people coming in to prepare for the ride, intermingling with those just coming off the ride who want their locker contents back. It was bedlam. I was really starting to lose it completely. Joey, who had been standing close to me or attempting to do so, was also beginning to deteriorate. His bucket was filling up, so I needed to get him out of there quickly before he had a meltdown, which would only add to the stress I was already under.
We eventually made it through the attraction and out the other end, where we finally had a quiet moment to regroup and take a deep breath. I was acutely aware that my attention had been primarily focused on myself over the past twenty minutes, leaving Joey partially neglected and to fend for himself. I felt I needed to make up for that, so I thanked Joey for his patience and apologised for getting a little stressed. Then, in an uncharacteristic moment of tenderness, he put his arm around me and gave me a brief hug. I was floored, a wave of emotion washing over me. Here I was stressing about Joey’s well-being, and here he is demonstrating through his actions that he had been doing the same for me. Joey does show tender emotions, but they can often be buried among the more challenging behaviours. To the casual outside observer, Joey can be harsh and unfeeling, but that’s not true at all. He just struggles to express himself, lacking the tools to manage and regulate emotions that are hard for him to deal with. Moments like this remind me that empathy in autism doesn’t always follow typical patterns. My son might not always say the right thing or realise when his words hurt, but this gesture—unprompted and full of feeling—showed a deep, genuine connection.
The pride I felt in Joey’s moment of empathy was unfortunately short-lived. As we stood there, in a semi-exposed section of Diagon Alley, waiting for the now torrential rain to subside, the downpour intensified dramatically and without warning. Several lightning bolts not only lit up the dusk evening brightly, but the immediacy of the eardrum-shattering thunderclaps accompanying them confirmed the supercell was directly on top of us. Another bolt struck, then another in quick succession, seemingly just meters from our position with a blinding flash, sending shudders down my spine. I’ve lived in Florida before and am no stranger to intense thunderstorms, but you never truly get used to them. They are frightening even for seasoned adults, so the impact they have on a child’s mind must be overwhelming—especially when exposed as we were. Deep down, I’m conscious that lightning can and does strike people down, and we were too close for comfort. I was genuinely afraid, but also desperate not to show it. There must have been over a hundred other people all huddling into small groups, desperately trying to find a few square meters of refuge from the downpour. Waterfalls of water were everywhere around us as the rapid dumping of so much water from the sky, with nowhere to go, made it feel like we were directly under a waterfall.
Joey was on the verge of a full-blown panic attack. He was looking at me intently, clutching at his chest, breathing shallow, practically crying and stimming. He was clearly scared and barely holding it together. I didn’t blame him. The situation was making even me anxious, though I desperately tried to help him stay calm, not revealing my own misgivings. I kept comforting him, patting him on his back and rubbing his shoulders gently. I used a deliberately slow, calming tone of voice, telling him that everything would be OK, that the thunderstorm was passing, and we were perfectly safe where we were. I tried to make small talk with him, grounding him with distracting questions about his new Transformer toys.
It was a full 10 agonising minutes before the supercell exhausted itself, and the skies started to brighten slightly. When the rain had subsided to the point I felt it was safe for us to move out of the area and back into the park proper, we meandered over to the Men in Black building, where Sandy and Jae had sought refuge from the storm. It took Joey probably another half hour before he was fully functional again. We had made it all the way to the child-swap area in the Men in Black attraction, where we were finally reunited with Sandy and Jae. We all thought Joey would enjoy the indoor ride, as it was a shooting gallery type of attraction, where you are transported in a ride vehicle through various MIB scenes to score points by shooting at targets. He was climbing down from his anxiety but still not quite there, so I stayed with him, continuing to ground him, while Sandy and Jae went on the ride. By the time they were back, Jae took it upon herself to help calm Joey down some more. She even managed to persuade him to go on the ride with her, which they then did. By the time they came back at the end of their jaunt through the ride, Joey was mostly himself again. Jae had done a fantastic job with Joey—indeed, she has been brilliant with him many times on this holiday. She has stepped in several times with him, instinctively finding just the right balance to help keep him on an even keel.
Once we were all done with MIB, we lingered for a while in the shop. This was mainly because it was now raining again. Sandy and Jae dashed for the adjacent building, which housed The Simpsons Ride. Conscious of the trauma of being caught in a supercell a short while ago, I thought it best that Joey and I hang out in the shop for a bit longer. I had hoped the rain would subside some more. Eventually, with the park’s closing time bearing down on us, we decided to dash the Transformer ride again, as Joey wanted to ride it again. No doubt he also wanted to peruse the shop again.
As expected, Joey enjoyed the ride again. Also, as expected, I let him borrow a little of his remaining pocket money for the holiday to buy another Transformer toy to add to his collection. With another bag of toys, we made our way back to the front of the park. It was still raining a little, but not so heavily anymore. Joey was by now full of energy again. Even though he had scored a few more Transformer toys today, he was telling us about one particular one he had seen at the Florida Mall a few days ago, which he had hoped to acquire. It was evidently an older version no longer available, so it was a rare find, and he was extremely keen to get his hands on it. I could already sense that another problem was brewing. The thought he might not be able to get this rare item was already starting to weigh heavily on his mind, and I could sense his anxiety starting to percolate once more.
As we passed through the Universal Studios Store again, I took the opportunity to return and repurchase that T-shirt we bought for Jae at the start of our park visit, scoring the 10% discount in the process. I tried to distract him from the issue of the Transformer he had seen at the Florida Mall, but I wasn’t having much luck.
By the time we were in the car, Joey was asking about visiting the Florida Mall, just in case the Transformer sells before he gets a chance to buy it himself. Nobody—especially Sandy, who was on her last legs already—fancied the prospect of a thirty-minute detour. Everyone was looking forward to getting home. As a compromise, Sandy called the store to ask about the toy. Alas, they confirmed it was no longer there—presumably sold. Joey started panting, as though he was heading for his second full-blown panic attack of the night. At this point, Sandy and I were exhausted and running out of tools in our arsenal. As if to pick up on this, Jae stepped in. She, Sandy and I had spoken a few words to each other in Dutch. We sometimes do this in rare circumstances, as Joey doesn’t speak Dutch. We agreed with each other that Joey’s anxiety and panic attacks were understandable. He lacks the mental tools to handle certain situations, so we sometimes have to step in to help him overcome some hurdles. Jae had been trying to get Joey to send her images of the transformer in question, but he wasn’t doing so. I think this was more a reflection that he was concluding there was nothing that could be done, so he didn’t recognise the value in doing so.
After some discussion among the rest of us, Jae took charge. “Send me a picture of it, Joey,” she said, scanning for the name of the toy through various online stores. When he didn’t respond—convinced it was hopeless—Jae wasn’t deterred. Through her detective work, using his earlier descriptions, she found it on one of the online marketplaces she uses, Vinted. “Found it,” she announced minutes later. “Someone in France is selling it on Vinted. Second-hand, but look—it’s in perfect condition.” She showed him the photo. Initially reluctant, Joey’s face twisted, but showing some signs of softening. “Second-hand won’t work. It needs to be new,” he said. “Joey,” Jae said patiently, “it’s the same toy. And it’s cheaper—just $50 instead of $250. That leaves you more budget for other things. Think of how many more Transformers you could get with that.” My eyes were still peeled to the slick road ahead, but I listened intently to this negotiation, too exhausted to intervene. Sandy was silent beside me, equally spent and no doubt pinning her hopes on a restful evening on the outcome of this negotiation between the kids. Jae had read the room—saw us flailing—and taken over. “I’ve bought it for you,” Jae announced. “As a present. You’ve been having a rough day.” She showed her screen confirming the purchase.
Joey’s breathing slowed immediately. The panic attack that had been building—the second one of the night—evaporated. He perked up, animated again, already talking about where it would fit in his collection. For the second time today, I felt an overwhelming sense of pride in one of my children. But this time, it was Jae—who gets less attention, less accommodation, less of everything because her brother’s needs are so demanding. Today, when it mattered, she stepped up.
Because of heavy traffic on I-4, I took the toll road route home. It was slightly longer, but with it being so slick on the roads, and because I was by now exhausted, I felt it was the safer option. We all freshened up at home before heading out for dinner. For tonight, I dropped Sandy and Jae off at the Olive Garden, while Joey and I enjoyed some quality time together at Chilli’s.
Today, life threw the kitchen sink at us. We had drama, stress, panic attacks, exhaustion, but we also had tender moments, pride, compassion and brilliant problem-solving. Joey’s unprompted hug after the locker chaos—recognising my stress when I’d been too busy managing the chaos around me and neglecting his. The thunderstorm that sent him into panic, requiring every ounce of calm I didn’t actually feel. Jae’s detective work and generosity when Sandy and I once again had nothing left in the tank. These are the moments that define our family life: not the rides we went on or the parks we saw, but the small acts of care that get us through. Joey showed empathy, which he otherwise struggles to express. Jae stepped up when her brother—and her parents—needed her most. Balance. Some days, the stress wins. Others, like today, are punctuated by small victories that make it all worthwhile. As is so often the case, the moments that drain us are balanced by the moments that fill us back up, all jumbled together in an ever-flowing balance of daily life. This is what survival for us looks like: recognising that making it through with our sanity intact is the real victory.