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.

It’s Not the Disability, Stupid

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Well, the disability community’s Interwebs were lighting up again yesterday. This time, it was about Meryl Streep’s acceptance speech for the Cecil B. DeMille Award at Sunday night’s Golden Globes. For those who haven’t heard, Streep embedded in her speech a bit of criticism of one of Donald Trump’s more embarrassing moments on the campaign trail:

This instinct to humiliate, when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect, violence incites violence. And when the powerful use their position to bully others we all lose.

She was referring, of course, to Trump’s criticism of Washington Post reporter Serge Kovaleski, especially his mimicking of Kovaleski’s disability.

In response, as he has asserted many times previously, Trump told The New York Times, “I was never mocking anyone. I was calling into question a reporter who had gotten nervous because he had changed his story.”

The Data? The Argument? Or the Person?

Many people will find Trump’s words hard to swallow, but I wonder if something else isn’t going on here. I’m tempted to believe him when he says he wasn’t mocking Kovaleski’s disability. It’s likely that, to his mind, that’s not what he was doing at all. To his mind, he was simply rebutting something Kovaleski said. Full stop.

That’s where the problem lies.

It seems that Trump makes little distinction between the words that offend him and the person speaking the words—every aspect of that person. So if Kovaleski has offended him by implying that Mr. Trump wasn’t telling the truth about seeing thousands of Muslims celebrating the Twin Towers’ destruction on 9/11, then Kovaleski himself, in his totality, is fair game. And when he looks at Kovaleski, he sees the disability as a defining characteristic, one that is available to him as he pursues his retribution.

This tactic is similar to the way Trump responded to Meryl Streep’s address—tweeting that she is “over-rated.” As if her acting talent (or supposed lack thereof) disqualifies her from offering a considered opinion on any other matter. She’s a washed-up actress, so she must be wrong. About everything.

You see, it’s not enough to engage the argument; you have to destroy the person making it.

“We Create Our Own Reality.”

I don’t think Donald Trump is a pioneer in this area, either. He may have put his own personal stamp on it, but it’s been around forever. Especially on the political stage, but in other aspects of life, many assume that the best way to win an argument is to paint the one making that argument in the most insulting of colors. So anyone who supported Hillary Clinton is an abortion-loving, traditional family-hating liberal. Anyone who supported Trump is a heartless, uneducated, white knuckle-dragger. Opponents of Obama are racists, and pro-life people hate women’s rights. Truth and facts be damned, it’s all about the character of the person. Destroy the person, and you destroy the argument. And push aside the facts.

This reminded me of a conversation that journalist (and, incidentally, autism dad) Ron Suskind had with George W. Bush advisor Karl Rove. Here’s Suskind describing their exchange:

[Rove] said that guys like me were “in what we call the reality-based community,” which he defined as people who “believe that solutions emerge from your judicious study of discernible reality.” I nodded and murmured something about enlightenment principles and empiricism. He cut me off. “That’s not the way the world really works anymore,” he continued. “We’re an empire now, and when we act, we create our own reality. And while you’re studying that reality—judiciously, as you will—we’ll act again, creating other new realities, which you can study too, and that’s how things will sort out. We’re history’s actors . . . and you, all of you, will be left to just study what we do.”

This, I think, gets to the heart of Donald Trump’s (and many other people’s) way of dealing with inconvenient facts. Take the focus off of that which can be documented, and put it on the more subjective and ephemeral. Create a new reality, and create it loudly enough, and you’ll outshout the data.

Truth, Power, and The Art of the Deal.

I’ll close with one more quote. This time from Peter Steinfels, one-time editor and now occasional contributor for the Catholic magazine Commonweal.

Mr. Trump does not appear to see public discourse as a process of establishing a state of affairs and drawing conclusions from them.  He sees it as a process of negotiating—a negotiation that is ultimately a power struggle. As The Art of the Deal advises, you open this struggle with an extreme position, or in public debate the most exaggerated, inaccurate, even preposterous pronouncement available and then, if necessary, you ratchet down.

Discourse is not, in effect, about truth. It is about power. In this respect, Mr. Trump has a quintessentially postmodern mind. The stricture against lying is about as relevant to this understanding of public discourse as the infield fly rule is to backgammon.

So no, it’s not the disability, stupid. It’s just that: calling people stupid, or lame, or losers, or has beens, or wannabes, so that you don’t have to reckon with facts.

When Darkness Isn’t Really Dark


I have a very creative kid. Well, more than one, actually. But the one I’m talking about right now is a sneaky kind of creative. As in, he stays quiet, under the radar, and then out of nowhere, he surprises you with something that blows your mind. Like this picture. He showed it to Katie last week in a very nonchalant way, as if it wasn’t a big deal. In fact, he had drawn it a few weeks back, but never thought to show it to anyone. Clearly, his still waters run very deep.

When Katie first showed me the picture, I was more worried than proud. It’s such a grim, depressing subject, and the title was alarming . “Is this what he thinks about his life?” I wondered. “Does he really feel trapped inside his anxiety?” But Katie saw it differently. She was super impressed with his artistic talent–the shading, the level of detail, the combination of hard, rectangular bricks and the softer, rounded glow of the light. “I knew he was good at building things like Legos,” she said. “I just never knew he was good at illustrations as well.”

That helped. Frankly, I don’t know why I was so surprised. We know he has anxiety issues. We know he is keenly aware of his aspie differences, and that he tends to isolate himself because of them. Why wouldn’t he try and find some outlet? Besides, there are far worse things he could do, like keep it bottled up inside until he implodes. Still, I was cautious. 

So I asked him about it, and he confirmed that this is how he often feels. He was so matter-of-fact about it, too. As if he were a clinician describing a diagnosis to a group of interns. No sadness. No desperation. No obviously personal investment at all. Just the objective, rational, clear facts. I made sure he knew to talk to one of us, or at least his counselor, if he ever felt really bad, and his answer was classic: “Of course I know that. I’m not stupid.” Again, objective, unemotional, calm, cool, and collected. 

“I’m Not Suffering.”

Now, if you’re an autism parent, or if you are autistic yourself, you’re probably chuckling a bit. You’re familiar with “professor syndrome.” If you’re a parent, you’re also likely familiar with the tendency toward catastrophizing every new insight into your kid. You know you shouldn’t, but you can’t help yourself. It’s a gut reaction. 

At any rate, I asked him if I could share the picture and the story behind it. He agreed–too quickly, I thought. So I pressed him a bit, explaining what that might mean. “I may have to give some background, including that you suffer from anxiety and depression.”

“Don’t put it like that,” he said.

“Why?”

“Because I don’t suffer from it.”

“What do you mean? You’ve told me yourself how depression can make you stay in your room all day and keep you from getting together with friends.”

“Yeah, but that’s not suffering. That’s coping.”

“Okay, so what’s suffering?”

“Well, I haven’t killed myself, have I?”

I was so surprised by this that the only thing I could do was laugh. I could tell he was completely serious, but the answer was so extreme and yet seemed so obvious to him that it was comical. 

The best part? He didn’t get offended by my laughter. He just flashed me a sheepish smile and laughed a bit himself. 

This kid’s going to be all right.

Stubborn Faith in a Heavenly Vision

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A chilly morning in Emmitsburg, Maryland

Here they are: our six kids. All sitting quietly at the grotto on the campus of Mount St. Mary’s University, in Emmitsburg, Maryland. “The Grotto” (a replica of the Lourdes grotto in France) has been a place of quiet, prayer, and reflection for students and pilgrims for decades. Many were the afternoons and evenings I spent here during my college years, and I feel blessed to be able to bring my kids up here every now and then.

It’s a lovely sight, isn’t it? Anyone passing by would look at them and think nothing but warm and comforting thoughts. “What a wonderful family! They must be the most prayerful, holy, and well-behaved kids. Their parents must be awesome saints!”

Ha!

Now, I don’t want to give the wrong impression. Of course my kids are wonderful. They’re loving and kind and generous and good-natured. I’m crazy-proud of all of them. But angels? Don’t fall for it. They’re everyday kids with all of the challenges and temptations that their peers experience. They all have a checkered history of both fighting these temptations and giving in to them–sometimes very eagerly. They’re kids; what do you expect?

But they’re not just everyday kids facing everyday temptations. They’re also autistic. Every one of them. And that adds layers of complexity. This past Sunday morning was a prime example of these layers—and the reason why we ended up here.

A Familiar Drill.

Two of our kids had a tough Sunday morning. It began early for them. And by early, I mean six-o’clock early. I don’t want to go into the details, but suffice it to say that when one kid’s specific autistic traits trigger another kid’s specific autistic traits, it never ends well. And it rarely remains contained between the two kids. The disturbance spills over to at least one more, and that’s when the fun really begins.

So by the time we should have been leaving for Mass, four out of the six kids had been triggered in one way or another (another one would have been triggered too, but he just hadn’t gotten out of bed yet). With the melt downs and resulting emotional chaos, it became clear that Mass wouldn’t work. They were too keyed up, their emotions too raw. So we activated Plan B. We loaded everyone into the van, and headed for the Grotto. It wasn’t hard, either. By this time, they know the drill. They know that a quiet time in the mountains is much easier than sitting in a crowded church wondering if Dad was going to spring a pop quiz on them based on the Scripture readings for the day.

Once we got to the Grotto we did a few things. First, there was quiet time in the Grotto itself. Then, walking the path out toward the main entrance, we prayed a bit of the Rosary—but just three Hail Marys each instead of the traditional ten. Then, just off the main entrance, we stepped into the Chapel on the Hill, where we read the first reading from Mass, and I said a few words about it. That was it: forty-five minutes of God stuff. And not once did I have to deal with any major objections, melt downs or triggers. They were good as gold. Just as I had suspected.

Visions of Heaven.

I think it was significant that the passage we read (Isaiah 11:1-10) spoke about God’s desire to restore creation to its original harmony. The reading is filled with images like the wolf and the lamb living together in peace and a baby playing by a cobra’s den. It talks about there being “no harm or ruin” and about the earth being filled “with the knowledge of the Lord.”

We normally read this passage as a depiction of heaven. But during Advent, the Church plucks this vision out of the distant future and tells us that Christmas is a partial fulfillment of the promises. It tells us that we don’t have to wait until we die to find the kingdom of God. Right here, right now, we can take one or two steps closer to the kind of peace Isaiah talks about.

This is what I told the kids in the chapel. I told them that I’m not giving up on this vision, and neither should they. God has promised, and I’m going to hold him to his word. I will keep teaching and supporting and encouraging them to become the best version of themselves possible. Even if the forces arrayed against us are large and intimidating, I am still going to lean on God and his faithfulness. I am still going to do everything I can and trust that God’s plan for my family mirrors the plan described in this passage.

Stubborn Faith.

This may sound unrealistic or heroic, but what other choice do I have? Ours is far from a typical family. We have so many challenges distributed across so many different personalities that we would never survive without faith in a generous, loving God.

I don’t mean a generic faith. I don’t mean a naïve faith that is really an abdication of responsibility. I mean the kind of faith that lets you yell and cuss at God when things get out of hand. I mean the kind of faith that believes in God’s direct intervention in our lives—according to his inscrutable wisdom and on his unpredictable schedule. I mean stubborn, grit-your-teeth-and-believe-despite-all-evidence-to-the-contrary faith.

I’ve said it many times before, and I’ll say it many times in the future: I am convinced that this whole messy, beautiful, frustrating, agonizing, energizing, liberating thing is God’s doing. And so every time the challenges get too hard, or the weight feels unbearable, I know I have recourse. I can tell God, “This is the family you have given me, so I’m counting on you to give us what we need to make it through. You didn’t send your Son into the world just to tell us to pray more and try harder. So here I am. I’m waiting. Take your time if you want, but I’m not going to let you off the hook.”

I don’t know. Maybe I’m being too cheeky. Too arrogant. But this kind of prayer has gotten me through some very rough patches in the past. What’s more, it’s the kind of attitude I want my kids to have: trusting in God, but also expectant; humble before their Maker, but with the familiarity of a child to his father; accepting who they are, but never settling for a “lesser” life because of it.

In other words, I want to teach them the same kind of stubborn faith I’m learning.

I think it’s working.

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?

Special Needs, Special Skills

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You know, when I tell people about our family’s unique make-up, I often get variations on one familiar response. It’s usually a combination of incredulity and well-intentioned pity. “Six kids? And they’re all on the autism spectrum? Wow, that must be so hard!”

Sure it’s hard. And challenging. Even daunting at times. But not to worry. We’ve got this. Why? Because special-needs parents have a very particular set of skills. They are skills we have developed over time as we have learned how to assimilate to our new normal, articulate the facts about our kids’ diagnoses, and advocate for them far and wide.

What are these skills? They are too many to count, actually. But the list below contains some of the more important ones. Take a look at them, and then ask yourself whether incredulity and pity are the best responses.

  1. Legal expertise. We know how to read a Federal law—and how to spot our family in it. It takes a special kind of person to know the ins and outs of Public Law 108-446, 118 Stat. 2647. It’s the kind of person who can point to this law with the kind of pride that many graduates point to their yearbooks. “See that? That’s us they’re talking about.”
  2. Close, personal relationships with members of the medical community. And the counseling community. And the law enforcement community. And all the local pharmacists.
  3. Elite status in our kids’ schools. Lunchroom moms and classroom volunteers? Rank amateurs. We have the principal on speed dial. Hell, some of us are on a first-name basis with school board members.
  4. No-Mess vision. It’s like x-ray vision, only way cooler. Cluttered countertops and overloaded kitchen sinks disappear before our very eyes. Piles of unwashed laundry melt away. Furniture damaged in melt downs or picked to shreds by anxious, OCD fingers blend into the walls and (beat-up) carpet.
  5. Membership in exclusive online communities. Other people call them support groups, but what do they know? We call them by their true names: Tribe. Extended Family. Confidantes. Council Elders. Best Friends.
  6. Premier access to upper-level insurance representatives. We know how to jump over the call-center drones half a world away and get right to the decision makers. We know the secret words that will get us there. We have their access codes in the form of multi-digit extension numbers.
  7. An unwavering commitment to date day. It’s more than just keeping the “romantic spark” in our marriage. It’s a matter flat out survival. But never at night. That’s the witching hour. It’s Saturday lunches for us. Or Sunday afternoon excursions to the grocery store together. It’s also the occasional getaway courtesy of a generous family member. Whatever it takes to keep us sane.
  8. Super intelligence. Words like methylphenidate, comorbidity, and neurodiversity roll off our tongues. We can spot the difference between OCD, ODD, and ADD at a hundred yards. We know what FAPE is and how to get it—and no, it’s not a contagious disease. We know how to take control of IEP meetings and how to explain complex neurological disorders to curious laymen and benighted teachers alike.
  9. Unbreakable strides. We don’t let little things like setbacks, discrimination, added diagnoses, or institutional ignorance slow us down. We know how to keep moving forward despite whatever obstacles or opposition we might face. We started our march with the first diagnosis, and nothing is going to stop us from doing everything we can for our kids.
  10. Wide open eyes. Where others might see stubbornness, we see a kid struggling with sensory overload. Where others see defiance, we see a perseverative loop. We have learned to perceive love in the quirky, the ordinary, and the bizarre. We can see joy in chaos and sadness in violence.
  11. Thick, thick skin. I’m talking rhino-hide thick. Judgmental stares bounce off us. Hurtful words shatter on impact. We laugh at denials of service, and scoff at the word No. How did our skin get so tough, you ask? From the salt of all the tears we shed early in our journey.
  12. Soft, soft hearts. We melt when we see a fellow traveler at the park or in the store—a young man flapping his hands or a small girl tapping on every window she passes. When we spot parents out with their special-needs kids, we smile broadly and have to resist the urge to run over and give them bear hugs. Our eyes mist up when our ten-year-old learns how to ride a bike or our first-grader gives us a hug. We have learned to receive love in unorthodox ways and unexpected circumstances. And we have learned how to give love in ways we never thought were possible. We excuse the inexcusable, embrace the inexplicable, and cherish the (seemingly) trivial.

So there they are: twelve key skills of a special-needs parent. As you can tell, we don’t want pity. We’re doing quite well without it, thank you very much.

However, if you wanted to give us cash, we wouldn’t object.

Of Trailblazers and Human Pokémon

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So here we are at Halloween, the second most expensive holiday of the year. Actually, our family has been living this holiday for nearly three months, as our kids usually begin planning for it just as back-to-school shopping begins. One in particular plans for a particular costume, then obsesses over whether it’s the right one, then scraps those plans and comes up with a new one, then obsesses over that one again, until . . . well, you get the picture. It’s not uncommon for people with ASD to get stuck on one thing for days and weeks at a time. It’s a form of perseveration that can lead to anxiety and depression, so we try hard to help the kids keep it to a minimum—with varying degrees of success.

A Quirky Constitutional.

But that’s not the story I want to tell today. I want to tell you about a little walk that one of our daughters took the other day. That’s her in the picture above. She decided to go trick-or-treating as a human version of the Pokémon Spritzi. But as a sort of practice run, and just because she wanted to, she told us that she wanted to walk around the neighborhood this Saturday in her get-up. That’s right, up and down the sidewalks with a mask, umbrella, dressy shoes, and pink dress. In broad daylight. On a regular autumn day. Oh, and she also wanted us to take her downtown so she could walk around Baker Park in full regalia.

Her request confronted us with a question that I suspect many ASD parents face. On the one hand, in defiance of a neurotypical one-size-fits-all world, we encourage our kids to be themselves. There’s no need for them to try to force themselves to be “normal” as general society defines normal. There’s also no need to add to their anxiety or sense of otherness by implying (unintentionally) that they have to hide who they really are.

But on the other hand, we know how odd a human Pokémon can appear to most of our neighbors. We don’t want our kids to be labeled as “weird” or, worse, bullied by neighborhood kids. This daughter, in particular, had some tough experiences in eighth grade, and the memories of it still haunt her two years later.

Quite the Quandary.

So that was our quandary: do you protect your kid? Or do you affirm his or her uniqueness and creativity? Do you do your part in helping to change society’s perceptions? Or do you give your kid a lesson on what the real world is like and on how to fit in without compromising themselves? It’s a perpetual balancing act, with no right or wrong answer.

In the end, we didn’t have to give any answer—mercifully. She slipped out on her own in the middle of the afternoon, while I was out running errands and Katie was upstairs cleaning. She had a nice little constitutional around a couple of blocks with hardly a peep from anyone. Just one person on our street made a comment, and even that was mild and jovial.

Still, I’d like to think that whatever choice we made, it would have been made in love and with the best of intentions.

Trailblazers by Default.

It’s hard sometimes knowing which side to come down on—with this and many other issues. There’s no manual for parenting, and that’s doubly true for ASD parenting. In the neurotypical world, you have the experience and example of the many people who have gone before you or who are walking along the path with you. But ASD parents often find themselves walking by themselves, and on a different path.

I think this is especially true for our generation. Ours is the age of Temple Grandin, Steve Silberman, and Parenthood. Ours is the generation of disability advocacy, the ADA, and IDEA. It’s only in the past decade or so that ASD has become better diagnosed and recognized. So in many ways, we are the trailblazers.

It’s not just in our neighborhoods that we’re blazing trails. Through our advocacy for our kids, we are teaching school administrators and teachers about autism. We are helping our churches learn how to be more welcoming and openhearted. We are making parks and playgrounds more accessible. And we’re doing it not just for our kids, but for the others around us—and even more important, for the next generation.

So keep this in mind, all you special needs parents. Your work is having a far greater effect than you know. Just by walking down the street or into a McDonald’s with your kids, you’re making a huge difference. A trip to the library or a walk in the park means a lot more than exercise for your kids. Every contentious IEP meeting adds another brick in the road toward full inclusion and acceptance. You probably don’t even know that you’re doing it, but you’re blazing a trail just by embracing the family God has given you. You’re paving a way to make a brighter future for everyone—even the human Pokémon among us.