In Memory of Me

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So we made it to Holy Thursday Mass yesterday again this year. It’s a pretty big deal in the Catholic Church, since it is the beginning of our Easter celebration. It’s also pretty important because on Holy Thursday we remember the Last Supper, when Jesus gave us his Body and Blood in the form of bread and wine and told us, “Do this in memory of me.”

. . . Into the Hands of Sinful Men.

I love the idea that by saying, “This is my body . . . This is my blood,” Jesus made sure he would be present to us all the time. I’ve always loved the way that the Last Supper foreshadows the cross: in both cases, Jesus gave himself into the hands of sinful men so that he could lift them up to be with him. I find it moving that Jesus continues to give himself to us—sinners though we are—every time we come together to celebrate Mass.

Now, before we get to all the autism stuff, do me (and yourself) a favor. Let this thought sink in for a moment: Jesus continues to let sinful, conflicted, duplicitous, envious, lustful, bitter, [insert sin here] people take him into their divided hearts.

Six Sacramental Signs.

All this was in my mind on Thursday as we entered the church. I was really looking forward to a deeply meaningful, spiritual experience at the church. But alas, it was not meant to be. A couple of our kids had had a rough day at school, and they brought their agitation with them to church. One had forgotten to take her ADHD medicine, so she couldn’t stop chatting with Katie, fidgeting all over the place, and trying to engage her brothers. Another was worried about a difficult test that morning, and his anxiety worsened as the Mass went on. A third just plain didn’t want to be there, and he made sure to let everyone know it.

So there I was, trying to keep the kids from boiling over, trying not to distract the people around us, feeling more than a little uncomfortable with the way we stuck out, and feeling cheated out of my time with God.

Then it hit me.

Jesus has given these children to me. He has placed them into my hands. He knows what kind of person I am. He knows my weaknesses and my faults. He knows my selfishness and my lack of generosity. He knows my impatience and perfectionism. And still he saw fit to give me six kids with special needs. Six kids who would need extra attention. Six kids who would need a creative, flexible approach to parenting. Six kids who would need extra love to help make up for the world’s lack of understanding and acceptance.

I saw this right there in the middle of Mass. These kids are also the body of Christ. They are all signs of God’s beguiling creativity. They’re signs of his maddening ability to call forth the better part of my human nature while at the same time exposing my darker parts. They’re sacramental signs who both symbolize God’s mystery and impart his grace to everyone whose hearts are open.

In the midst of their everydayness, their struggles, and the occasional banality of their lives, there is something sacred about my kids. Like the Eucharist, their simple, unassuming appearance belies their wondrous complexity and depth. And like Jesus himself, they are a sign of contradiction, especially in the way their place on the autism spectrum evokes extreme reactions, both positive and negative. Yes, they are the body of Christ, and God has placed them into my hands. Just as Jesus is placed into my hands at every Communion line.

The Divine Risk-Taker.

I don’t know that I would take such a risk if I were God. There are a lot of men who would do a lot better at this than me. But then again, God seems to be in the risk-taking business. Again, it’s like the gift of his Body and Blood in the Eucharist. Jesus knows the risks involved in giving himself to us. He knows that not everybody will accept him with the right state of heart. He knows that nobody will ever grasp just how awesome this gift is. But none of this stops him from offering himself to us. Over and over again. In love and humility. For our sakes.

In a similar way, Jesus has seen fit to entrust these six children, these six images of himself, into my hands. He knows the risks. He knows that I won’t always be worthy of the gift. He knows that I’ll never fully understand how much he has given me. Still, he has given them to me and said, “Here, I trust you.”

At the Last Supper, Jesus told his disciples, “If I have washed your feet, you ought to wash each other’s feet.” He also told them, “Do this in memory of me.” He says the same thing to me. Every day. Through every one of my children. In every challenge and melt down and IEP meeting and therapy appointment and sensory overload.

Wash their feet.

Do it in memory of me.

And all I can do is stand in wonder that he trusts me so much.

Happy Easter, everyone.

Outcast by Association

Jesus and the Leper

This kind of thing happens a lot, but I don’t often share it in this forum: a passage from Scripture or an insight from prayer will speak directly to my life as an autism dad. This time, it’s an insight that came from the Scripture readings at Mass today (Sunday, February 11). So, having explained the spiritual nature of this post—at least the beginning of the post—let me move ahead.

First, the Story.

Today’s Gospel reading was the story of Jesus healing a leper. It’s in Mark 1:40-45. The man, somewhat timidly, says to Jesus, “If you will it, you can make me clean.” Jesus, in reply, touches the man and says, “I do will it; be made clean.” And the man was healed.

But then Jesus tells the man to keep this miracle quiet—only to show himself to (not necessarily tell) the priests, who had the power to release him from his exile and allow him to return to his home, his family, and the synagogue. So what does the man do? He goes around telling everyone what Jesus did.

Mark tells us that because of the man’s loose lips, “it was impossible for Jesus to enter a town openly. He remained outside in deserted places.” By touching the infected flesh of a leper, Jesus became ritually unclean, just as the leper had been. And because this fellow spread the news, everyone knew what Jesus had done. He was now barred from entering any town or village. He couldn’t even go visit his mother back in Nazareth.

A Simple Choice.

Okay, so that’s the story. Here’s what hit me: Willingly (I do will it), Jesus took upon himself the isolation that had been this unfortunate man’s lot. The ritual uncleanness had passed from the leprous man to Jesus, so Jesus could no longer be around other people any more. And without a peep, he accepted the consequences of this action. Knowingly, by his own actions, he placed himself under the judgment of the law.

What I found interesting is the simple, unassuming way that Jesus did this. There were no recriminations against the upholders of religious purity. No sense of superiority over those who enforced the law with no regard for the people they were condemning. No protest against the unfairness or extreme nature of the judgment. He quietly accepted the verdict. He willingly became an outcast so that this fellow could be reunited with his family and friends.

Outcast by Association.

There’s a parallel here for my life as an autism dad. Over the years, I have had countless meetings with teachers, administrators, school psychologists and school counselors. Along with Katie, I have pushed and pulled, schmoozed and confronted, plotted and pleaded to get my kids the help they need. I have even gotten one teacher fired and another demoted because of the way they worked (or failed to work) with my kids.

As you might expect, I have become persona non grata in a few schools. I have been identified as that dad on more than one occasion. One assistant principal became very adept at not returning my calls or e-mails. A teacher once told me, “You know, not everyone is cut out for school” as an attempt to keep me from pushing for help for my son. Another administrator grew so weary of my advocating that all sense of comity shriveled up, and every communication became unnaturally stiff and formal. It’s as if I had become an outcast myself.

I’ve done all of this so that my children could be more welcomed into the community of their classmates and into the community of learners that is their right. Of course, I’m willing to do it. I’d do anything to make sure my kids get every chance to succeed.

But before you get the idea that I’m a hero—or that I think I’m a hero—let me give some perspective.

Parting Ways with Jesus.

As I said above, Jesus became an outcast willingly. There was no bitterness in his heart against those who judged him. He felt no recrimination against the people who barred him from entering their towns. He held no judgment against his judges. There was only concern for the ones who had been excluded and demonized. He even forgave the people who crucified him.

I, on the other hand, can give in to the very same us-versus-them mentality that I have railed against when it is aimed at my children. I can issue harsh judgments about their teachers’ ignorance, blame the school administrators for their callousness, and even issue a blanket condemnation of all the neurotypicals around us—everyone, that is, except my close friends who, of course, get it.

So this is where Jesus and I part ways. Jesus feels just as badly for the people who do the judging as he does for their victims. In his eyes, everyone is a victim. They may be victims of the structures of sin in the world that convince people that they get ahead by pushing other people down. Or they may be victims of the structures of sin in their own hearts that make them demonize the “others” around them—the attitudes of rivalry and animosity that lurk inside everyone’s heart. Or, most likely, they are victims of a mixture of both.

It Starts with Me.

Of course, I will never be as pure or humble as Jesus. But that doesn’t mean I shouldn’t try. I don’t want my kids to grow up with a victim complex. I don’t want them to grow up bitter at the world. I don’t want them to develop some perverse sense of superiority to the “haters” and “judgers” out there.

It starts with me. Children learn what they live, so I need to create an environment of openness and generosity in our home. I need to model forgiveness and understanding. And because my kids can have a hard time grasping social cues and relationships, I need to be as clear and patient as possible.

This, I think, is one of the most important lessons I can instill in them. Because no matter where they go or what they do, they’ll always stand out. Maybe not all the time, and maybe not a lot, but they will. It’s inevitable; they’re too different not to. And no matter how much progress we make as a society, there will always be people who don’t understand. People who treat different people as lesser people. People who write them off. Even people who turn them into scapegoats.

If I can teach my kids to forgive and not judge, they will develop into men and women whom people will want to be around. They’ll find their communities, their homes, their tribes—places where they can thrive and make a difference.

It starts with me. But then again, it really doesn’t. It started with Jesus. He set the tone. He showed the way. And by his grace, I can too.

A Perplexing Plethora of Plushes


With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.

After the Intake

Notebook Writing

So we took our Little Guy to a pediatric hospital in Baltimore to begin the process of evaluating him for ASD. Up to this point, all we had for him was a provisional diagnosis from our psychologist in Florida—about three years ago. She had just begun her own evaluation when we ended up moving to Maryland, and we’re just now getting around to getting something more formal.

Anyway, today’s appointment was “intake”—a bunch of questions about his early development, his family history, his current state, and our concerns. As she asked us the standard barrage of questions, the psychologist also observed our boy in action. But the main focus was on us. For an hour.

It sucked. Not because we couldn’t answer her questions. We could. Not because the Little Guy was out of control. He wasn’t. It sucked because, well, you know why. A whole hour describing our family’s challenges. A whole hour listing our son’s deficits and telling stories about his meltdowns and his sensory issues and his social struggles and his attention deficits.

Poignant Reminders.

Katie did awesome. She always does. Her memory is sharp as a tack. She could recall his early developmental challenges far better than I could. She was clearer on his current challenges than I was. She spends more time with the kids than I do. She works part time, and I’m on a ten-hour-a-day schedule. Plus, she takes more therapy appointments than I do. So what was standard fare for her came flooding over me with a quickness and a matter-of-fact tone that felt like a gut punch.

You see, when your whole household is ASD, you tend not to notice all the details. It’s just part of your normal. We don’t have any neurotypical kids, so we don’t know what standard behavior looks like. After a few years, you begin to glide over the ticks and twitches of ASD. You take them in stride and keep trying to move forward. You get so accustomed to them that you don’t even recognize how many of them there are. That is, until you have to recount them to a perfect stranger with a degree.

So to hear the Little Guy’s symptoms rattled off with precision one after the other . . . well, let’s just say it was hard. Lumpy-throat hard. It broke my heart. Today was a reminder of how tough life will be for my kids—of how tough it already is.

It was a reminder of every tense, contentious, and tearful IEP meeting we ever had. It was a reminder of the friendships my kids have lost due to their social challenges, as well as the friendships Katie and I have lost because of people’s misunderstanding. It was a reminder of all that we are missing out on, like family dinners out or vacations or even peaceful walks in the woods. It was a reminder of the earlier days, when we were both new to this gig and so much more scared than we are today. And it was a reminder of the large amount of work that lies ahead of us as we plan and prepare for our children’s futures. So yeah, it was hard.

I so want to see my kids have the best future possible. I so want to see them thrive and kick ass in the world. I want to see them happy and productive, welcomed and loved. Some have a greater chance at this than others, but none of them will find it easy. All of them will ask the “Why me” question more frequently and with more poignancy than their typically developing peers. That’s why it was so hard.

Mission Accomplished.

Today was also hard because this evening our Little Guy put up a huge, weepy, melt-downy fuss about something he normally enjoys: soccer practice. He was probably worn out from the trip to Baltimore. It wasn’t that demanding in any ordinary way, but it was a break in his routine, and that never ends well. It hurt to see him so upset, but I knew I had to help him power through it. If he could just get on the field and start running around, he would end up having a good time. But the drive there seemed unending. No amount of consoling words or attempts at humor could calm him down. All I could do was keep driving.

We got to the field, and his mood lifted as soon as he saw his team mates. He ran onto the pitch and started kicking the ball around with them. Mission accomplished—for him at least.

It took me a little longer. Once I saw that he was okay, I took a long walk and prayed, my Rosary in hand. “Holy Mary, Mother of God, pray for us. . . .” It helped. A ton.

Now I’m sitting here on the sideline, watching my son. He’s hesitant about mixing it up with the other kids. His kick and his run can be awkward at times. His teammates engage in typical boy humor that he doesn’t quite get. And he takes every misstep of another player far too seriously. Standard Little Guy stuff.

But it’s okay. I’m sitting in the shade of a tree. A cool breeze is blowing. I catch the scent of honeysuckle on the wind. And I know God’s going to take care of us.

Everything’s going to be all right.

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?