Earlier this year, we took our first big family vacation to Disney World. Our kids are at that wonderful age of earnestness. They get excited about every journey and really believe in the magic of special places. Walking into the park, they barely contained their excitement. There was screeching at every character sighting and hyperventilating when they acknowledged you. Little jumps and happy claps at sightings of favorite settings and live music. And that was just Olivia! These first moments were everything you dream they would be for your family.

But for Adrian, it did not take long for that unbridled joy to turn into terror and a full-blown meltdown. After gamely waiting in line and boarding Guardians of the Galaxy, he screamed, “Dad… I think this ride might be too scary” as we spun backwards the first time. He could not keep his head up for the Journey into Imagination. Figgy was “sus.” We know that unexpected things can be tough for him, so we tried something we know he loves– the Many Adventures of Winnie the Pooh. Besides Cars, this has always been his go-to Disney comfort viewing. While the rest of us were restless in the hot sun, Adrian’s head was snapping back and forth, scanning the queue. First, he whispered, “Dad… I don’t think I can do this” as we passed Pooh’s house. Then “I can’t be here” as we neared Gopher. Finally, he started screaming and flailing violently. It turns out, Adrian is terrified of animatronics. Not in a “I find clowns creepy” way, but in a cold sweat “these clowns are trying to kill me” vein. With what felt like hundreds of judging eyes on us, I scooped him up and charged back through the line as he cried into my shoulder, assuring him (and trying to convince myself) that he’d be ok.

Despite the boys being 9 and 7, the only time we had been away from home for more than a couple of nights before this was to scatter Uncle Mike’s ashes in Michigan. While there were a lot of complicating factors that kept us from travelling much– like the fact that I am a workaholic who hates taking time off– the main reason was that Adrian is a medically complex child. He has deadly food allergies to such a wide range of ingredients that dining out can be extremely difficult. His asthma is profound and can be triggered by almost anything in the air. And as you can probably guess from the Pooh line story, Adrian has autism. 

Neither of our kids is neurotypical. Both Dante and Adrian are gifted. Dante was the only 4-year-old I have ever known who confidently, and often accurately, interrupted adults with an “Akshewelly” before explaining how they were wrong. Kid was born a professor, like his father and grandfather before him. His spatial reasoning and logic processing are off the charts. He is a self-taught origami and crochet prodigy, a prolific reader, a reluctant but gifted pianist, and an avid and accomplished gamer. It is all seemingly effortless, as Dante can harness his high intelligence and hyperfocus in ways that society is engineered to accept and promote. It is such a thrill to watch him meld his well-formed personality with the emerging social norms and expectations of adolescence. Parenting Dante is not exactly easy (are any kids?), but we understand him well because his profile looks a lot like mom and dad. 

Things are more complicated for Adrian. Like his brother, Adrian’s IQ is extremely high. I suspect that he has an eidetic memory and hyperthymesia– the deep cuts this kid pulls will shock you. He is highly verbal, and when he is not over-stimulated or provoked, Adrian can be the most charming and loving kid around. He is the most curious person I know. He loves to learn and share. He can tell you what any Dino picture or figure is or give you the historical backstory on the development and sale of a specific Lego figure. He’ll spot rare birds and butterflies when everyone else in the party is blathering away, and he will still be able to tell you what the conversation was about. He will also scream at you because someone put a t-shirt in his pajama drawer “on purpose,” flip over a table because he doesn’t understand why he has to do a non-preferred task, or run screaming from a room because someone is eating a dangerous food on the other side of the place. Life is rarely simple or fair for Adrian.

An inevitable piece of partnership and parenting is the loss of self. The identity, activities, and leisure you spent your adolescence and adulthood cultivating are cast aside to make room for your partner and to cater to the needs of your children. Going to Disney World is not my idea of fun! That this trade-off is right and inevitable dulls the pain, but the loss is real. It feels all the more profound and pointless when your fight to raise healthy, happy kids feels like a losing battle. And boy oh boy, do you feel like you have lost when you are holding your 7-year-old as he is completely overwhelmed by… Winnie the Pooh? 

But that is also the great thing about parenting! That loss of self is accompanied by growth beyond the self. Sure, it does not feel good to get those glares. The looks of pity are almost worse. But there is a little boy who is afraid and confused in your arms. And you will do anything to fix that because he means more to you than you ever did to yourself.

Adrian and I retreated to the first aid station to regroup. Once he was de-escalated, he told me that the sounds and crowd upset him. Though he had watched a lot of videos to prepare for the trip, they did not capture the full sensory experience. He was upset that he did not get on the ride and disappointed in himself. He vowed to try again (but only after he spent the entire rest of the day riding Tomorrowland Speedway over and over).

He made it all the way to the ride loading area the next time before eloping over the wall into the gift shop. Not wanting him to stay despondent over another failure, I offered to get him any stuffy he wanted from the gift shop if he tried again. This time, he froze at the honey pot– I scooped him up and got him on the ride. He refused to uncover his eyes, but he did stop screaming halfway through. The next time, he even looked at a few scenes.

This is what parenting a kid with special needs feels like. It takes something simple and makes it complex. Yes, you are about to attempt to ride the Many Adventures of Winnie the Pooh 10 times. You will get over your hangups about labels and ask for help. And each new attempt will raise a host of challenges, fits of growth and regression, and often bring unpredictable results. And at the end of the day, when you are full of doubt and disappointment that the big trip you desperately wanted your kid to enjoy was a failure, they will declare, unprompted and earnestly, that this was the best day of their life. 

This is what makes raising a special child so profound. Much of the growth and development that feels so natural for Dante is also lost on us as parents. It happens out of sight, self-taught as it were, through the experimentation inherent to social engagement and friendship. I am intensely proud of his independence (and more than a little sad that it has come on so quickly). For Adrian, these things all happen in the open. Indeed, much of it is actually our learning through trials and tribulations, confirming our understanding with him, and helping him develop the words and tools to understand, process, and proceed on his own. 

Our journey with Winnie the Pooh opened other doors. Adrian was able to use the same tactics to get himself on many other rides. He has incentivized himself by asking me for small things he wants if he confronts something he fears– Pirates of the Caribbean, Ratatouille, and Rise of the Resistance this summer– holy immersion terror! He took Rise so seriously and had more fun and fear than maybe anyone who has ever ridden it before. His next goal is to add 7 Dwarfs Mine Train and Tiana’s Bayou Adventure to his conquered list. He is repeating out loud that the immersion he feels is not real. He watched every behind the attraction he could handle to see the mechanics that make the rides go. He downloaded a Minecraft Magic Kingdom to practice more! 

I am ashamed to admit that I never imagined myself as someone who could be a caregiver or parent to someone with special needs. It would interfere with my work, which for much of my life was how I defined myself.  Wouldn’t the extra effort, the frustration, the time, and the money make you resentful, even if just on a subconscious level? I’ve never been more wrong or had a dimmer view of my own humanity. Adrian’s view of the world is beautiful and interesting. Helping Dante balance the impulse to protect his brother with the desire and obligation he has to build his own life is the sort of thing parents hope they get to coach their kids through. How thankful we are for such amazing boys.

By no means is it easy. In fact, it is hard. I constantly worry I am not giving enough to Dante or Olivia. Moving away from our suburban dream house to be in a college town with family and a small, community school that fit me and my kids better raised a lot of eyebrows. Viewing my role as a father as more central to my identity than my career as the manifestation of my life’s work and accomplishments is a work in progress. Waking to wild outbursts every morning and sitting with Adrian until he falls asleep every night is literally exhausting. And like most parents, I am not sure I am making the right calls or doing a good job at any of it. 

And that is ok. I am not looking for validation. Rather, I view this happily as a full and good life. Confusing. Exciting. Hard. Very much in progress. I felt very much as though I had figured everything out. I understand how people and institutions work. I know how to motivate, move, and drive people. And then my boys showed me there was still so much for me to learn. Far from a midlife crisis, mine is a life of continued change and growth. A life with more to see, understand, and do. Isn’t it just that I give up a bit of what I thought I had figured out for an opportunity to get so much more? How fortunate am I to learn at these little master’s feet?