The Great 2022 Autism Roadtrip

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Here’s what Substack has to say about it: “With the app, you’ll have a dedicated Inbox for my Substack and any others you subscribe to. New posts will never get lost in your email filters, or stuck in spam. Longer posts will never cut-off by your email app. Comments and rich media will all work seamlessly. Overall, it’s a big upgrade to the reading experience. The Substack app is currently available for iOS. If you don’t have an Apple device, you can join the Android waitlist here.”

We’d love to hear what you think about it too! - Ben

CREDIT: MOSTOVYI SERGII IGOREVICH/SHUTTERSTOCK

by Justin Rosario

Jordan does not ask for much. This stems directly from his autism. Jordan was first diagnosed at 18 months with something called Persistent Developmental Delay (PDD). PDD is a kind of a pre-autism diagnosis because kids that young can show the symptoms of autism but it’s a little too early to actually diagnose properly. At the same time, you don’t want to hold off on starting the needed services like physical and speech therapy, so a PDD diagnosis can get the ball rolling. At the very least, if it turns out not to be autism, intervention can help the child reach their developmental benchmarks.

Alas, Jordan was in fact autistic. Moderately so. His particular brand of autism left him with the stereotypical aspects: repetitive motions (“stimming”), random verbalizations (“verbal stimming”), difficulty making eye contact, inability to play with others, etc. But it also left him completely unable to ask for something. In any way whatsoever.

Communications none oh none

As a baby and toddler, Jordan could cry. And…that was it. He could not speak and, more importantly, could not point. This part is a little confusing and it is important you understand. As Jordan grew up, he learned to walk and then run. He did not learn how to point to things. His autism negated the entire concept of expressing his needs. He could cry when he was upset but he could not do anything else to let us know that he wanted or needed something.

He couldn’t rub his belly to let us know he was hungry. He couldn’t pick up a pillow to let us know he was sleepy. He couldn’t even hold out his hand to let us know he had hurt his finger, because doing that would be expressing a need. If we did not have specialists from the city helping us, it would have taken forever to figure that out and even longer to learn how to help him. As it was, it was a laborious effort to get Jordan to point to a specific object on a shelf. While Jordan could not speak, he could understand what we were saying. He knew what a red ball or a blue truck was. If you asked him to pick up a specific toy out of a group, he would walk over and pick it up. But it was really hard for him to point at it on command. And god help you if you tried to get him to point to the toy he wanted to play with.

Later, when we overcame that considerable hurdle and Jordan was also able to speak, we discovered that his inability to express his needs extended to every aspect of his ability to communicate. That was not much of a surprise but it felt like starting from square one. When he was, eventually, able to say, “I’m hungry,” we felt like crying. 

Of course, this came with some stumbles. When Jordan, at long last, learned to ask for help (a far more abstract concept than hunger), he did it by shrieking in a panicked voice at the top of his lungs like he was bleeding to death. After all, the goal was to get mommy and daddy to come help, right? That was a very stressful 3-4 months until he learned to moderate his tone to something more appropriate.

After a very long time, however, Jordan learned to ask for things. He just…didn’t ask for much. He would ask for snacks and dinner and hugs, but he didn’t ask for typical kid stuff. He didn’t ask for toys or stuffed animals or to go to the movies. The one year (just one!) that he made a Christmas list was a BFD. Accordingly, we got everything on it, including the electric drum set. A decision we have regretted to this day. 

Honestly, Jordan asks for so little, we rarely say no. Don’t get me wrong, he regularly asks for more cookies or pop-tarts or soda and he gets a big ol’ “Nope!” all the time. But when it comes to stuff not involving food or going out to do something, Jordan does not ask for a whole lot. But sometimes he asks for something we can’t do and considering how little he asks for, it feels awful telling him there’s no way. 

Until, suddenly, there is. 

Imagination Movers road trip!

Jordan is stuck in something of a time warp when it comes to what he watches. There are a handful of shows he watched when he was 3 (he turns 14 in April) that he never stopped watching. The Fresh Beat Band, Yo Gabba Gabba, Blue’s Clues, and…The Imagination Movers. While he watches Yo Gabba Gabba the most, Jordan has been asking to see “The Movers” in person for years. He wanted to meet them and give them one of his drawings.

This was a problem because Disney had canceled the show back in 2011, right when Jordan had started watching it. That didn’t matter for Jordan because he has happily watched the same episodes over and over (and over and over) for the last decade without batting an eye. Autism tends not to get bored of repetition. But as far as I knew, that was it for the Imagination Movers. They might have toured for a bit but that was years ago. Then, one day, out of sheer randomness, I googled “imagination movers tour” and hooooly shit! They were playing shows. Not only were they playing shows, but they were also going to be just an hour away from my wife Deb’s dad up in New York. Time for a road trip!

Fortunately, this was long after the height of their popularity or the tickets probably would have cost a fortune. We wanted to take Jordan to see the Fresh Beat Band back in 2012 or so and tickets were around $100 apiece. For a kid’s concert! We couldn’t possibly afford it back then. At $28 a pop, we could certainly afford to see the Movers now. 

We skipped work and school on Friday, packed the car, and drove the 250 miles to Mema and Pepa’s house in Pelham, NY. Naturally, during the two weeks before we left, the price of gas went up by well over $1 a gallon, meaning we would spend as much, if not more, on gas than we did for the tickets. Not ideal but nothing short of a blizzard was going to keep me from taking Jordan to this show and even that wouldn’t stop me. For all I knew, this would be his only chance, ever, to see them. I said this, out loud, more than once. I probably should have kept my mouth shut.

Thanks, Mother Nature.

The drive up was fine, with zero traffic until we reached NYC. Then it was a slow crawl that added a full extra hour to our drive and reminded us, yet again, why we moved 250 miles away. Still, we took the time to stop at Andy’s Deli in our old neighborhood to pick up 4 dozen bagels and 4 very large pieces of crumb cake. We love Virginia but they can’t make a bagel worth a damn down here. If you haven’t had an NYC bagel, you haven’t had a bagel. Just facts. Deal with it.

After a lovely evening eating NYC pizza (unlike bagels, you can find decent pizza in Virginia but you have to look high and low for it) and hanging with the grandparents, we hit the hay early to rest up for the big day. We knew the storm was coming and wanted to get on the road early just in case. This turned out to be a wise decision.

It was raining all morning but the wind, sleet, and snow weren’t supposed to start until 11 am when the temperature would drop from the high 40s to the low 30s with a windchill in the teens. The show started at 11 and it was an hour's drive so we figured we’d leave at 9-9:15 to give ourselves plenty of time to get there, find parking and get in before it got nasty out. Twenty minutes in, however, the rain turned to sleet and then quickly to snow. The wind kicked up and visibility dropped by more than half. If you look at the weather map above really carefully, you’ll see me driving through the white and blue part, muttering a nonstop litany of curses under my breath the entire time. 

I have driven through actual whiteout conditions in full-on blizzards for hours on end and I was not kidding, absolutely nothing was going to keep me from getting Jordan to this show. Unless it was canceled.

It was not canceled.

It’s up to Jordan now

We got to the theater, parked a few blocks away (the theater's lot was already full), trudged our way through stinging snow and freezing wind, and took our seats. The final hurdle was now Jordan himself. There was a very real chance he would not be able to handle the show.

Rewind several years to Jordan at age 4. Debbie’s mother decided to take all the grandkids to the circus. Jordan, having never been to the circus, was overwhelmed by the sights and sounds (fun fact about autism: it is frequently accompanied by sensory issues which make loud noises and flashing lights difficult to process). Grandma had to take Jordan outside for most of the show. The next year, she took the other three and left Jordan home. We, as his parents, were too stupid and unsure of ourselves to say no. But the look on Jordan’s face as all the other kids left with Grandma and Poppy was enough to make that the last time we ever allowed that to occur again. It’s been an ongoing struggle with Grandma and Jordan’s autism, but that is a story for another time.

Even though he’s older, Jordan sometimes gets overwhelmed and overstimulated. This would be his first live music show. It was going to be loud and it was someone he was very excited to see. Jordan can also be very shy. These three things might combine to make it all but impossible for him to sit through the show. I was practically holding my breath when the voice rang out over the speakers…

That is the face of a very happy and excited Jordan. You also may have noticed his sister covering her ears. Poor Anastasia was not ready for how loud it would be. She had never been to a live show before and she was kind of annoyed when she realized that Imagination Movers was her first. The Movers were well before her time and she had watched a single episode a few days before just so she would have some idea of what she was going to see. I assured her it didn’t count because she was there to support her big brother Jordan, not for herself. Her first show is going to be Band-Maid in October. A heavy metal band composed of Japanese women dressed in maid outfits. You laugh, but you should not. They put most current American “heavy metal” to shame. Anatasia will be wearing concert earplugs.

The rest of the show went smooth as butter. Jordan got a high-five from one of the band members running around the audience and had a great time. He still got a bit shy sometimes when one of the Movers was in front of us (we scored second-row seats) but not enough to be an issue:

He was so excited and stimulated by the whole thing that he was completely worn out by the end of the hour-long show. At one point, he almost dozed off, not because he was bored, but from total exhaustion! But there was no time for sleeping. Remember, Jordan wanted to meet the Movers and give them a picture. And wouldn’t you know it? There was a meet-and-greet after the show! Two tickets for that, please! It wasn’t cheap but, seriously, Jordan really doesn’t ask for much. If we were going to drive all the way up to NY, drag ourselves through horrendous NYC traffic, and slog through a miserable bomb cyclone of a storm, the least we could do is have the kid meet the people he’s been obsessing over for most of his life.

We went up on stage after the show, Jordan handed them his picture, which they were delighted with, and then they autographed the other picture he’d brought with him. 

The live show has a 5th band member, Mover Kyle, who is not on the TV show. So he drew himself in and autographed it, which was awesome.

Then we took a picture with the Imagination Movers and Jordan was one very happy little boy/5’11” teenager:

The Imagination Movers have been playing for almost 20 years now and they were really good with Jordan. There were several other special needs kids there, some of them as old as Jordan, which was nice to see. The Movers didn’t blink an eye. An adoring fan is an adoring fan, right?

After that, we walked back to the car. It was still snowing and much colder but the wind had died down. Everything was covered in snow and ice and looked very pretty, capping off a wonderful afternoon. The drive back was perfectly uneventful and we all felt really good about being able to do something really special for Jordan.

Jordan, for his part, was happy to have seen the Movers after all this time. As soon as we got in the car, he looked at us and said, “Can I see Arashi?”, a J-pop band that has never toured in the United States. Then he put his head against the window and passed out.

Oy vey. Here we go again!