Have Yourself an Aspie Little Christmas

Welcome to the Most Wonderful Time of the Year! For the next month or so, front porches will be festooned with twinkling lights. Santa Claus will hold court at the local mall. Candles will glow at the table. Carols will resound at the spinet. And families will gather for feasts that will make all the Whos down in Whoville green with envy.

It’s that last one—the family gathering—that has me a little nervous this year. For the past twelve years, Katie and I were living in Florida while the bulk of our siblings were living in Maryland. But this summer, we moved back up North. Now, more than 32 relatives live within a one-hour radius of our home. Some are as close as the next neighborhood over.

Believe me, I love being back home. I’m so glad my brothers and sisters, as well as most of my in-laws, are nearby. They’re all good people, and we get along really well. But it’s been years since we’ve been part of a major family gathering, and a lot has happened in those intervening years. Mainly, we had a lot of kids who just happen to be on the high-functioning end of the autism spectrum.

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. Changes in routine are unsettling. The 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 always 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 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 come up with a few random guidelines for visitors to our home over the holidays.

A Field Guide to the Zanchettin Holiday Home.

  • Please remember that the Hallmark Channel is a mendacious purveyor of myth. 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 mini-trampoline belongs in the hallway, where we can keep an eye on it. And on its users.
  • 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 that you can use 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 Frozen. Not even oblique references. Don’t even say, “Let it go” in casual conversation.
  • 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 getting overwhelmed and 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.
  • Yes, that probably is the 75th time you’ve heard the theme song for the video game “Five Nights at Freddy’s.” It makes him happy, so we’ve learned to block it out.
  • Don’t be surprised if, when you ask one of the kids what extracurricular activity he’s involved in, 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.
  • 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?

Aspie on the Verge

So here I am, sitting in our local Music and Arts store, typing away on my iPad while my son spends the next thirty minutes in heaven. He knows we’re not going to buy him an electric guitar until he gets a lot better at his acoustic, but he still likes to come here to try out the electrics and to dream.

The thing is, by most calculations, he shouldn’t be here at all. He was rude to his mother. He was verbally abusive to his little brother and sister. And he hung up the phone on me this afternoon when I told him I didn’t want him playing a particularly violent online computer game. He didn’t come up from the basement for dinner, and he gave us some serious lip when we told him that he had to clear the table after he finally did eat.

So why am I giving in to his request? Why am I not withholding this highly desired activity as a consequence for his negative behavior?

Because the rudeness isn’t the whole story. In addition to being obstreperous, he was also jittery, depressed, and anxious. Even the dog, whom he always loves, gave him the heebie-jeebies. Just one whine from her, and he clenched his fists, hunched his shoulders, and covered his ears. “Roxie!” he barked back, “Stop it!” When his little sister turned on the TV just a little too loud, he jerked his head back, winced, and yelled at her. His eyes were red-rimmed and darted back and forth. His breathing was shallow. He paced back and forth around the kitchen, his muscles betraying the tension of a hunted animal waiting for the arrow to pierce him through. I knew that if I didn’t get him out of the house, he’d explode. And that’s never pretty.

I sometimes wonder if I’m just enabling his bad behavior when I do this. After all, it’s possible that he’s manipulating Katie and me. But this isn’t a nightly pattern. There are many evenings when he’s generally okay, evenings when he participates in dinner, does his chores without complaining, and shows at least a little bit of tolerance for his younger siblings. There are also plenty of times when he doesn’t get his way, whether he likes it or not. But still, every time this happens, I wonder if I’m being a bad parent.

I don’t know if I’ll ever get used to this. When your kid is on the autism spectrum, you have to be ready all the time for God only knows what. You never know what’s going to set him off. Maybe he had a tough day at school. Maybe one class was a little too rowdy, and it set him on edge. Maybe a classmate said something mean, and he kept it in, letting it fester, or maybe it was an innocent, joking comment that he misinterpreted. Maybe he was overly tired from staying up too late (which he does on occasion but rarely admits to). Maybe it was nothing special at all. Maybe the ordinary challenges of living in the world have finally gotten to him. Of course, we know some of the things that definitely will set him off, but there are so many unpredictables in everyday life that just about anything could trigger a melt down.

Fast Reset, Slow Reset.

By the time we were ready to go to the store, I was pretty much done. I had been home for a little more than an hour, but that was enough, after a long workday, to wear me thin. This kid’s aspie-on-the-verge shtick had drained me of what little reserves I had left. It was all I could do not to unload on him when he asked me to take him to the store. “Keep it together,” I told myself. “He didn’t mean half of what he said. Just give him this time to reset himself, and it’ll be okay.”

Sure enough, the reset began as soon as we got in the car. Away from the noise and triggers of the house, his mood shifted, and he became the chatty, relatively chipper kid he often is. I, on the other hand, was still rattled from trying to keep the peace at home. I never stop marveling at how quickly our kids can shed their symptoms, oblivious to the effects they had on the people around them. It’s just another example of the social challenges they face–not really “getting” the feelings of other people. So there he was, chatting up a storm, while I was trying mightily to cool down!

So now I’ve got a half-hour to regroup. That’s how much time I’ve given him at the store. I hope it’s enough. For both of us.

An Inspired Diptych

Pieta

So here we are in the middle of another Holy Week—the seven days between Palm Sunday and Easter. This is the time when Christians pay especially close attention to the stories of Jesus’ arrest, crucifixion, and resurrection. And as you might expect, believers conjure up beloved images during this time—images drawn from the Stations of the Cross or from a classic movie like The Ten Commandments or Jesus of Nazareth.

My favorite image, however, is a little different. I tend to think about Jesus’ mother, Mary, and especially that moment after the crucifixion that has been called the Pietà. See that picture up there? It’s Michelangelo’s rendering of the scene, and it’s on display in St. Peter’s Basilican in the Vatican. 

Anyway, the Pietà wasn’t always my go-to Holy Week image—at least not until something happened about four years ago. And since it’s Holy Week, I thought I’d share the story.

It had been a long evening—and it was only 6:30. Our second child had been fighting Katie over homework, fighting her older brother over the use of the TV, and fighting me over whether she was going to eat her dinner or just sit at the table and wail.

She was nine years old at the time: a very pretty girl with big, ice-blue eyes; light brown hair with natural blonde highligts; and a fair face with a few freckles. When she’s not throwing a tantrum, she has a lively sense of humor and an innocent, even sweet disposition.

She also has Asperger Syndrome. Among other things, this means that her brain has a difficult time processing all the visual and auditory input that we neurotypical people take for granted. So after a full day dealing with the sights and sounds of school, she has had just about as much as she can handle. She spends six hours every day holding it all in, and it’s only when she gets home that she feels safe enough to let it out. And that’s precisely what happened this evening.

So there I was, taking my daughter from the dinner table and escorting her to her room—again. “Maybe if I sit with her for a few moments,” I thought, “she’ll be able to calm down.” So up the stairs we went, me tugging her as she reluctantly followed, crying and swatting at me. I sat down on her bed, held her in my lap, and tried to speak in soothing tones while she shook and wept. But it was no use. She just kept pitching back and forth, wailing and screaming until she fell asleep in my arms.

Recognition and Revelation.

I was lucky that night: she fell asleep quickly enough for me to make it to the prayer meeting I had been attending. It took place in the chapel of a large Catholic church. The chapel was dedicated to Mary, and it featured a series of stained-glass windows depicting various scenes from the Virgin’s life.

I got there a few minutes early, tied up in knots and on the brink of tears. Since only a few people had arrived, I found a quiet corner and knelt down for some private prayer.

As I bowed my head and shut my eyes tight, a host of anxious thoughts swirled in my mind. What was going to happen to my little girl? Would we ever find the right therapies and medications? How could Katie and I keep up? What about our five other children, all of whom are also on the autism spectrum?

But then I looked up, I saw that I had stationed myself right next to the stained-glass window depicting the Pietà. I saw Mary, a look of both resignation and surrender on her face as she cradled the lifeless body of her son, the image pierced my heart. I had just come from cradling the seemingly lifeless body of my child, and here was Mary doing the same thing.

It was a moment of recognition and revelation. My reaction to my girl’s suffering was tinged with bitterness, but so was Mary’s. Looking at her face, I could tell that she didn’t just shrug off what had happened with a sense of holy indifference. She was a real mother holding her own flesh and blood. As I kept looking at the image, I imagined Mary telling me, “It hurts, doesn’t it? It really hurts. I don’t have comforting words to offer you, except to say that I know how bitter it is—because I’ve tasted it. Does that help?”

An Inspired Diptych.

In that moment, I felt a sense of kinship with Mary that I still have a hard time putting into words. The best I could come up with was a diptych, a kind of two-paneled painting. On one panel, I imagined myself holding one of my children, much the way that Mary holds Jesus in the Pietà. As I contemplate this panel, I realize that, just like Mary, I too am sharing in my children’s pain and frustration and anguish. When melt downs like my little girl’s happen, I am just as helpless as Mary was, and the best I can do is keep vigil with them and pray for God’s strength to keep moving forward.

On the other panel, I see myself as the lifeless body, spent and exhausted, lying in Mary’s lap. I have given all I have to give, I have done all that I know how to do, and there’s nothing left. But Mary is there, accepting my pain, sadness, and helplessness as her own and ennobling it by turning it into a prayer that we offer to God together.

I realized that night that this is an okay place to be. If Mary is with me, I know I’ll find some kind of resurrection, some kind of divine grace to help me get up and take the next step. I saw that it’s okay to collapse upon occasion; someone will always be with me until I can rise again.

Rising to the Challenge.

What I learned—what I felt—as I looked at that stained glass window has stayed with me. My little girl is not so little any more. Her melt downs may not be as dramatic, but her challenges have become more complex. So too have our other kids’ challenges, melt downs, and rough patches. Frankly, a day doesn’t go by that I don’t get the chance to identify with one or another—or both—of those pictures on my diptych. And that’s a good thing. Because I don’t know what I’d do without them.

I hope you have a happy Easter.

Five Years with Autism

Five years.

Sixty months.

Two hundred and sixty weeks.

One thousand, two hundred and eighty-six days.

That’s how long we’ve been living with autism. Actually, scratch that. We’ve been living with it for fourteen years, but we didn’t know what it was until five years ago. We were a little slow on the uptake.

Five years is a kind of a milestone, isn’t it? So naturally, I did a bit of looking back at both the highlights and the lowlights to see how far we’ve come and to think a little bit about the future. Here’s what I came up with.

From Fear to Acceptance.

First, the diagnoses themselves. From the first one, when our lives began to change, to the last one, which was more or less a given, I can see somewhat of a progression.

• With the first diagnosis, in March of 2009, there was fear. Would he ever talk? Would he ever be independent? Would he wander off one day and get hit by a car? Would he spend the rest of his life alone?

• Then came the second diagnosis, in May of 2009. This time, there was a combination of relief and anger. Relief because we finally had a name for her quirkiness and emotionality. Anger at her pediatrician, who had told us it was only a matter of bad parenting.

• Then came the third diagnosis in September of 2010. This time, there was mostly guilt. Guilt because of all the lost years. Guilt because this was our oldest, so he had to bear the most years of our misunderstanding him. The signs were there early on, but I didn’t want to see them.

• With the fourth one, in March of 2011, there was a sense of validation. I had called it early on this time. This little fellow spent almost an entire year insisting that he wear nothing but red shirts and shorts. He would also get so absorbed in building Legos that he would forget to go to the bathroom.

• Then came the fifth in early 2012. This time, there was laughter. I had seen so much with the first four that nothing was a shocker. Besides, by this time, my attention had turned to working with the kids’ schools. Frankly, I had bigger fish to fry than to react to something I was beginning to think was inevitable.

• I’m sure I felt something when the last diagnosis came during the summer of 2013. I just can’t remember what it was. Nonchalant acceptance, maybe? More or less, I took it in stride. Nothing could shock me anymore. It just gave us more insight into this sweet little girl.

Not Just Labels.

But besides the accumulation of labels, there are some other milestones. During this time, I have:

• Attended more than 30 IEP meetings at three different schools.

• Spent nearly $50,000 in autism-related medical and psychological treatments, schools, medicines, and therapies for my kids.

• Lobbied our state representatives for increased funding for our local autism center—and won.

• Taken more than 15 stress-relieving day trips to Disney World.

• Seen the dissolution of two friendships—one close, the other not so much—because of misunderstandings or judgments about our family.

• Seen two other friendships slip into casual acquaintances. Not because of any malice but because our paths rarely cross any more. (Let’s face it. I rarely cross paths with anyone these days!)

• Met other autism parents online, in whom I have found encouragement, humor, common experiences, and wisdom.

• Fallen more deeply in love with my wife, whose commitment to our kids never ceases to inspire me.

• Made peace with God over the whole situation. Ironically, I bear fewer external markers of my faith than I have in decades (e.g., commitment to a Bible study, membership in a small faith community, parish involvement), but I feel more strongly connected to the Lord and my faith than ever before.

Accepting a Constant Presence.

So yeah, it’s been a wild ride. There have been wonderful triumphs, like the day our four-and-a-half-year-old finally got potty trained. And there have been crushing blows, like the day one of our kids, in a full-scale melt down, grabbed a kitchen knife and threatened to cut himself. There have been strings of days when we’ve wondered if it could ever get any worse. And there have been times when everyone seemed to be firing on all cylinders and we could breathe easier.

But through the ups and the downs, autism has been a constant presence. I know I said a few years ago that not everything is about autism, but I don’t think that’s true any more. Autism is an integral part of who my kids are, and that means it shows up in just about every aspect of their personalities. They’re not being autistic only when they’re melting down or misinterpreting social situations. They’re just as autistic when they’re happy and making excellent progress. They do everything a little bit different, and that’s part of what makes them so unique.

I guess this means that I no longer look at autism as a scaly, ravenous monster ready to devour my children. There are days, mind you, when it seems like that’s happening. But there are many more days when it feels more like an awkward, galumphing puppy that you have to keep an eye on—you don’t want it peeing on your floor or chewing your furniture!

So have I come to a point of acceptance? Yes and no.

Accepting my kids and their unique neurologies? Absolutely.

Accepting the fact of their diagnoses? Pretty much, although there are times that I lose sight of it.

Accepting that this is how they’re going to be forever? No. I’m not trying to fix them, but I am trying to teach them how to be as successful as possible in a world that can seem so bizarre, alien, and even frightening.

What’s around the Corner?

And that’s where the future comes in. As I stand at the five-year mark, I can be proud of what we’ve accomplished, even as I peer nervously around the corner to see what’s still waiting for us. I know every year will have its own challenges and triumphs. I also know better than to assume that the worst is behind us. No one can say that with any degree of confidence. But I can say that the past five years have changed and shaped me in ways I never expected. They have shattered old misconceptions and built up new, stronger convictions. They have revealed a shallowness in my heart and taught me how to love more selflessly. And they have taught me never to put limits on what I—or Katie or any of my kids—can do.

There are many more obstacles to overcome, many more challenges to face down, many more threats to neutralize. There’s so much more we haven’t experienced yet, but I think we’ll be able to handle it.

Just as we’ve done for five years.

No Love from the Lollipop Guild

IMG_1279

Someone’s unhappy. No lollipops at the bank, because Daddy used the ATM tonight. Mommy always uses the drive-up window, and the Little Guy always gets a lollipop. But it was after hours, and the window was closed. The poor guy sitting in the back seat of my car just couldn’t comprehend a world in which The Bank does not equal Lollipop. No matter how many times I explained it to him, it just didn’t load. He knew his routine, and there was no room for variation. The autistic brain thrives on structure and predictability. Unanticipated change is a dangerous thing—especially when that change means no lollipops!

A Stuck Brain.

“Are we going to get a lollipop?”

“Not tonight, Little Guy. I have to go to the ATM.”

“Aren’t you going to the bank?”

“Yes, the ATM is a machine at the bank.”

“Doesn’t the machine give lollipops?”

“No, it doesn’t. If you want a lollipop, you have to go to the window. But that’s closed now.”

“But we going to the bank, and we always get lollipops at the bank.”

“Yes, but we can’t get one tonight.”

“But Mommy always gets lollipops at the bank.”

“That’s because she uses the window. But the window is closed, so we can’t get one.”

“No lollipop? This is so wrong!”

“I’m sorry, Little Guy, but we can’t get one.”

“But aren’t we going to the bank? We always get lollipops at the bank.”

I tried. I really did. I tried changing the subject. But he kept circling back to the lollipop. I tried to turn it into a game, tickling him and telling him that we had a yummy dinner waiting for us at home. Nope. I even took him to the drive-up window so that he could see that no one was there. No dice. No matter what I did, he became more and more anxious.

Plan B.

So I did what any sane man would do. I took him to the drive-through window at pharmacy across the street. They give out lollipops too.

“Hi, I think you have a prescription waiting for me? The name is Z-a-n-c-h-e-t-t-i-n. Nothing? Oh well, I guess my wife already picked it up. Oh, by the way, can you give my boy here a lollipop?” [I’m so clever.]

“Sorry, sir. We’re all out of lollipops.”

$#!† Now I was really in trouble. He started to cry. Big, crocodile tears.

Plan C—Please?

As we headed home, I tried a different distraction. I promised him a couple of mini Reese’s Peanut Butter Cups after dinner. But his language glitch was in high gear. First he thought I was promising him a cup of chocolate.

“No, chocolate and peanut butter. Together.”

“But I don’t like peanut butter. Only Nutella.”

“No, Little Guy. It’s a Reese’s Cup. You remember them, don’t you?”

“Is it chocolate ice cream?”

“No, chocolate and peanut butter. Together. You know—Reese’s cups!”

“Do you have them here?”

“No, they’re at home, waiting for us.”

“Instead of dinner?”

“No, after dinner.”

<Sniff> “Okay” <Sniff> “And a lollipop, right?”

The Comforts of Home.

By this time, we had pulled into the garage. He got out of the car, headed into the kitchen, and ate dinner with the rest of the family. A little disconsolate, but nothing too dramatic. Come dessert time, he had completely forgotten about the Reese’s cups. He was back home, back in his routine, and all was right with the world.

The little stinker!