A Brief, Fantastical Respite

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When I was in high school, I was really into science fiction and fantasy literature. I guess I still am, but I don’t usually get the time to immerse myself in a good novel these days.

Anyway, there was this one fantasy series I read in high school called The Chronicles of Thomas Covenant. The author, Stephen R. Donaldson, imagined the books to be a kind of dark inversion of Tolkien’s classic The Lord of the Rings.

Each book in the series opens with the (anti)hero Thomas Covenant experiencing some kind of crisis that mars him physically just before he is transported to a realm known as The Land. While in The Land, Covenant is quickly healed of his wounds and ends up reluctantly accepting a perilous quest. Lots of action, tension, magic and romance ensue—often quite gripping.

Then, as Covenant to the climax of his quest, something happens to him. He is caught in a battle, perhaps, or a curse is uttered against him. Whatever it is, it leaves him with wounds exactly like the ones he had just before he entered the Land. It’s at this critical juncture that he finds himself back in our world in the exact same condition he was at the start: haggard, numb, bloodied, and exhausted.

A Magical Christmas.

Well, that’s what I felt like the week after Christmas. We had had a rough few days leading up to the holiday, and I was feeling pretty beat up. Nothing seemed to be going right. A few of the kids’ anxieties had gone through the roof, issues at school mushroomed, and a few tight deadlines at work led to late nights at the computer.

But something strange happened on Christmas Day, and it lasted a few days afterward. There were no melt downs. No tantrums. No OCD or anxiety or disrupted sleep. It was absolutely delightful! My own anxiety diminished. I was sleeping better. We even took most of the kids to my brother-in-law’s for a Christmas gathering, and I had a blast because it was completely uneventful. I was sailing along, enjoying life in ways I had forgotten about in the previous weeks.

So far, so good. But then by December 30, things began sliding downhill again. First one kid went south. Then another. And another. Slowly over the next three days, we re-entered our “normal” zone with the melt downs, the perseveration, the communication glitches, the anxiety—the whole nine yards. Even work issues flared up again!

By lunchtime on New Years Day, I was back to my usual self: weary, furtively looking back and forth to see who was going to erupt next, steeling myself for the inevitable, even feeling that familiar lump in my throat after helping one of the kids through a tough time.

So Sunday had come, and I was ready to start back at work as if nothing magical had happened at all. Just like Thomas Covenant.

Go Easy.

Now, before you go feeling sorry for me—or telling me to suck it up, Buttercup—let me say this: I suspect that many parents of special-needs kids can relate to this cycle. On one level, every parent appreciates the fun times, the easy times, the magical times. But there’s a poignancy when it happens for special-needs parents because for those few short days, they know what the rest of the parenting world feels like on an average day. They get a glimpse of the “normal” that most parents experience most of the time, and it feels good. But then they return to their own special “normal,” and they have to put on their big-boy pants again.

I’m not going to sugarcoat it. It’s hard. It’s draining. It’s isolating. It takes so much more time and energy and stamina to stay on top of your kids’ needs and challenges. Sometimes you can want to curl up in a corner and not come out for a few days.

But we can’t.

Let me make one other thing clear: Katie and I know that it’s not the kids’ fault. We don’t resent them for who they are or for their needs. Much, in fact, of what can weigh on us is watching our kids go all this turmoil. We wonder what their future will look like. We worry if they will be able to live on their own after we’re gone. We ache for them to be rid of their painful challenges. And we feel helpless.

So when you see a special-needs parent looking unusually rested and refreshed, know that a lot is going on underneath the surface. Know that sooner or later they’re going to go through a Thomas Covenant-like transformation. So go easy on them. Maybe even offer to help them when the need arises.

A Field Guide for Holiday Visitors

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Well, here we are again, on the verge of another holiday season. Warm feelings abound this time of year, and everyone feels the urge to form unusually large gatherings and consume massive portions of food and drink. There’s something about the earlier sunset and the growing chill in the air that puts people in a nostalgic, romantic mood. Either that, or thinking about the cold and darkness of death makes them want to huddle together for protection. Whatever the reason, there will be family gatherings galore over the next month or so.

And then there are the ASD families. If you know anything about autism, you know that people on the spectrum can have a hard time with sensory overload. Noises and crowds can make them shut down or act out. Or both. Changes in routine are unsettling. The different smells, tastes, and textures of a holiday meal can be overwhelming. Even when they’re surrounded by people they know and love, they’re still surrounded. And that doesn’t feel good.

All of this got me thinking about how different our family can be—and how different we may appear to people who come to visit. Mind you, most of our relatives and friends are familiar with our dynamic, but there are a few outliers. Not to mention, new friends may end up dropping by. So, with no malice or prejudgment intended, I decided to revisit and revise the guidelines I had written a couple of years ago for holiday visitors to our home.

A Field Guide to the Zanchettin Holiday Home.

  • Please remember that the Hallmark Channel makes its money by shamelessly peddling its special form of mendacity. No one’s dining room looks like that, and certainly not ours. We’re too busy running to therapy sessions and prepping for IEP meetings to dust every other day. Or every other month. Or ever.
  • No, the dining room chairs do belong in the living room. In front of the computers. Which get tons of use. Which is why the chairs are battered and stained. And why some have the stuffing pulled out of them. Nervous, stimmy, perseverative kids tend to do that sort of thing.
  • If you find yourself trapped in a heavily one-sided conversation with one of the kids, remember that nonverbal clues don’t work. Use your words. Find some hook to change the subject. Unless, of course, you enjoy lengthy discourses about the relative merits of water type Pokémon versus grass types in the Kanto Region.
  • Please try not to make any references to any popular music. Or Rap music. Or Disney movie soundtracks. For some reason, all my kids have convinced themselves that they love metal music. Because their oldest brother blasts it into his ears to help him deal with the noise and chaos of his high school hallways.
  • Sorry, no Turkey Bowl in this family. A few of them watch Notre Dame football, but for the most part, these kids would fit the (stereo)typical definition of nerds or geeks. So instead of football, how about a rousing game of Super Mario? Or two hours binge watching the latest YouTube video game walk-throughs from Chuggaa Conroy?
  • Yeah, he spins around like that sometimes. Or hops. Or planks. He’ll be fine.
  • Don’t be offended if one or more of the kids disappears without notice. It isn’t you; it’s her. She’s probably looking for a quiet place to unwind. Just shrug your shoulders and move on to another child. We’ve got six of them, so there should be plenty to go around.
  • Don’t be surprised if, when you ask one of the kids what he does besides school, he replies, “Therapy.” He’s being honest.
  • Yes, he often sits upside down like that, with his head near the floor and his feet in the air. Or athwart both arms of the chair. Or draped over the back of the sofa. And yes, he’s very comfortable doing it.
  • Yes, I know he’s taking a bath right before dinner. That’s his safe place when things get too noisy. He’ll be out in about an hour.
  • Pardon me while I dole out the kids’ medicines. I have to take care of dinner and bedtime, so it’ll take a little bit longer than my morning routine. I’ll be back in about 10 minutes.
  • All compliments about our parenting will be graciously accepted by the management. All advice will be graciously ignored.
  • Why yes, I’d love another glass of wine. How did you know?

The Best Christmas Present Ever

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Some random thoughts as I watch my son perform in the Frederick Children’s Chorus Christmas concert.

  • I never thought I’d see this day. This is the kid who didn’t talk until he was four years old, and here he is on stage, singing! This is the kid who couldn’t sit still to save his life, and here he is patiently and carefully following the director’s every move. This is the kid who could zone out at any point and lose track of his surroundings, and here he is completely and totally engaged in the concert.
  • Look at him up there singing so enthusiastically! That autistic black-and-white thinking has enabled him to focus so completely on getting everything right, just as he has practiced it for the past four months. He is doing everything exactly as he has been taught. Every movement executed with great precision. Every word enunciated clearly and crisply. That smile radiating so innocently.
  • Seeing him so dedicated to the performance here helps me understand what he meant when he complained about chorus practice a few weeks ago. He didn’t enjoy it, he told me, “because it was too much fun.”
    — “What? I can understand not fun enough, but how can you have too much fun?”
    — “Oh, you know, all the other kids were goofing off too much, and I wanted to get down to work. They were having too much fun when I was serious about learning the music.”
  • See that picture up there? That’s the same kid at his school’s winter concert. Yes, he is in two choruses—the school chorus and the much more competitive citywide chorus. At the school’s concert, not only did he sing in the chorus, he had a solo. My son. On stage. By himself. With a microphone.
  • I used to wonder what the future looked like for him. Would he be able to live on his own? Would he find a job? Friends? Love? Now I’m dreaming about how far he’ll go in life. It seems like the sky’s the limit for this kid.
  • His other passion, in addition to music, is cooking. He often helps Katie around the kitchen. Just the other night he and I baked Christmas cookies together. He was so confident and competent, so invested in what we were doing, so willing to learn and experiment. I don’t doubt for a minute that his dream job—owning his own restaurant—is within reach. It’s not just a pipe dream that I humor; it’s a real goal that I absolutely can see him accomplishing.
  • I see what you can do, son. When I remember what you were like a few years ago and see what you are accomplishing right now, I am convinced that your future is very bright. It’s so bright that my eyes are beginning to sting. Hang on a second while I wipe them with this tissue.
  • This is the best Christmas present I could ever receive.

Mountain Climbing for Christmas

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Well, we survived another Christmas in our house. I suppose I shouldn’t say “survived” this year. There have been times, mind you, when that has been the best word to describe our family’s holiday observances. Having six kids on the autism spectrum can lead to all kinds of challenges around the holidays. From the absence of a structured school day to the sensory overload of a joyous but crowded Christmas liturgy, there are lots of opportunities for ASD people either to melt down or withdraw into their own worlds.

But this year was different. There were some minor issues along the way, but nothing left me shaking my head in deep frustration or abject resignation.

So what made the difference? I think much of the reason lies in something that happened four weeks earlier, on the first Sunday of Advent.

Two Horizons.

There’s a funny thing about Advent. For at least the first two weeks of the season, the Scripture readings in the Catholic liturgy focus on the “second coming” of Christ at the end of time instead of his first coming on Christmas Day. The prophet Isaiah’s glorious “mountain of the house of the Lord” is in the horizon, not the peaceful manger in Bethlehem. It’s a time of restoration and perfect, lasting peace, a time when the lion lies down with the lamb and when all the barren “wildernesses” in the world are transformed into lush landscapes.

It isn’t until December 16 that the scene shifts and Mary and Joseph take center stage rather than Isaiah and John the Baptist. In a sense, we shift from our ultimate goal—heaven itself—to one of the most important mile markers on the road to that goal—the dawn of redemption at the birth of Christ.

This shift can feel a bit jarring, but I saw something new this year. With its early focus on the second coming, Advent has a sense of movement. You know that you’re heading somewhere. The destination is always in view as you are encouraged to take one more step toward it. Rather than a time of passive waiting for Jesus to appear (in whatever form), Advent is a time for journeying. It’s a road, not a way station.

Progress on the Road.

What does all this have to do with autism and my family? Well, as we headed to Mass on December 1, it occurred to me that we are heading somewhere as well. We’re not just treading water, trying to survive the next melt down. We’re not just anxiously awaiting the next diagnosis or school-related drama. We’re not just marking time between therapy visits and prescription refills.

It kind of sneaks up on you, doesn’t it? You expend so much energy helping your kids make sense of the outside world, negotiating truces between them, advocating for them, picking up the pieces after they fall apart, and trying to forestall the next crisis that you rarely get the chance to see how much your work is paying off. But it is.

For one thing, whether you know it or not, your kids are figuring things out on their own, often quite independent of you. They’re developing their own coping skills and testing their own strengths and weaknesses. They’re learning what works and what doesn’t as they try to make sense of the jangled, jumbled world they’ve been thrown into. They do is all by themselves, when you’re not looking, and they come to their own conclusions about how they should live.

For another thing, your words are getting through to them, even if you have to repeat them over and over again. Just the other day, our oldest daughter verbally walked me through her unique, unorthodox strategy of how she was trying to avoid a melt down over a toy she wanted—and then proceeded to prove that it worked. Not only did she not fall apart; she was pretty darned proud of herself.

Finally, you don’t tend to notice day-to-day how much your kids are changing you. They’re making you more patient. They’re teaching you how to love in ways you never thought of. They’re making you more compassionate—not just for them but for everyone else who struggles. In a way, they’re helping to make you more like Christ.

In other words, you are on the road. It’s just hard to see it sometimes.

New Road, Same Destination. 

It sounds so simple, but when you’re in the thick of it as often as we are, it’s hard not to see the forest as just one freakin’ tree after another, each tree blocking your path. But those trees are more than just obstacles; they’re marking out a new road for you to travel.

This is one of the biggest challenges I face as a parent: accepting a different path for my family than the one I imagined so long ago. But that’s where my kids come in. Each in their own way, they’re heading down that path of their own accord, and they’re taking me with them. From the fourteen-year-old with intense social anxiety to the four-year-old with hair-trigger sensory issues, from the flap-happy eight-year-old to the OCD thirteen-year-old, they all seem to have discovered a new road. I have little choice but to follow them, sometimes chasing after them, as they go on their way.

I kind of knew that was happening all along, I guess, but this Advent has made it easier for me to see it. Even better, these past few weeks have made me more aware that the path doesn’t lead to a dead end or into a shadowy valley. It still leads to the “mountain of the house of the Lord.” The mountain is higher than I thought it would be. The climb is steeper than I thought it would be. But that’s okay, because the house that sits on top of the mountain is a lot bigger and a lot more glorious than I thought it would be.