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!

Not So Fast!

2014 seemed like it was going to be a good year. Our two oldest were enrolled in a private school dedicated to kids on the high-functioning end of the autism spectrum, and they were actually enjoying it. We were, too. Who wouldn’t? There is very little homework, and the teachers are both knowledgeable about ASD and approachable.

Our next two oldest kids were making good strides in the public school, including a very responsive IEP team for our fourth child. And the two youngest were skating along beautifully, showing the world just how much they could learn.

We had taken a relatively incident-free overnight trip to Disney World in January, and in February we took a longer trip to visit my father in Tampa—again, with no real problem. During that trip, we took a side visit to Sarasota that blew me away. The primary purpose was to visit my mother’s grave, but we turned it into an all-day thing, throwing in a lunch at a restaurant downtown. That entailed walking through a crowded arts fair. But again, with no incident. What’s more, at the restaurant, two people told us how beautiful our family was and how well-behaved our children were. I couldn’t have been more proud!

Things were going so well, in fact, that I caught myself wondering whether I was making a mountain out of a molehill with all this autism stuff. Was I just being too dramatic? Was I letting my fears color the way I looked at my kids? Maybe I was turning my anxieties into self-fulfilling prophecies.

Oh, Well . . .

That was a few weeks ago. Since then, we’ve had to deal with . . .

• A huge melt down from one of our private-school kids over a Doctor Seuss celebration the school had been planning. This trivial event brought back embarrassing memories from a similar one seven years prior. “I can’t go to school,” she wailed. “Don’t you remember how I had a migraine in kindergarten during Doctor Seuss Day, and I threw up? I don’t want that to happen again!” It took two hours of helping her work through it before we could get her to school. Ant that was just the beginning. For the entire week afterward, she became so anxious that she began throwing up every day.

• Completely irrational anxiety from our oldest about his upcoming confirmation—all because of a cognitive glitch that left him petrified of our local bishop. Seriously, the guy’s a kindly Cuban gentleman who lives next to the cathedral in St. Augustine. But my boy was convinced that the bishop was going to interrogate him in front of the whole congregation and condemn him to hell for his sins!

• Increasingly angry, sometimes violent, outbursts from our eight-year-old every evening. Once he’s surrounded by the whole family at the dinner table, he becomes jumpy and irritable. Too much stimulus that he can’t control. Too many voices talking. Too many flavors and textures on his plate.

• Our ten-year-old whiz kid fighting tooth and nail instead of doing the bang-up job he was capable of on his STEM project. The melt downs bordered on the epic because Minecraft had to win out.

• Our six-year-old girl collapsing into an emotional heap every time we corrected her for the slightest mishap.

• Our five-year-old boy suddenly becoming unable to sit still for love or money. Unless he’s playing Fruit Ninja on my iPad or watching YouTube videos of Angry Birds on the computer.

No Laurel-Resting.

So yeah, it’s been a trying couple of weeks that left me wondering what the hell happened. Everything was going so well, and then all of a sudden it wasn’t.

All this has shown me something, and I hope I don’t forget it.

Good days come, and you get a break every now and then. Maybe even a longish one lasting a couple of months. But God help you if you ever let down your guard. If you don’t keep working with your kids, if you don’t take advantage of every opportunity to move them forward another step or two, you risk losing more ground than you thought you had gained.

I knew it, but I relearned it: ASD is permanent. It’s also a tricky S.O.B. Just when you think you’ve got it figured out, just when you think your kids have it licked, it comes out of left field and says, “Not so fast, Cowboy!” This is especially true when your kids are high-functioning. They get good at masking what’s going on inside them, until they can’t take anymore. And if you’re not careful, you play along with them.

The Trap of Wishcraft.

It also showed me the power of the imagination. In a sense, I was in denial because there were no immediate crises to deal with. Things were relatively smooth, and I let wishful thinking take over. Rather than pay attention to the signs that some of the kids were beginning to unhinge, I slacked off and enjoyed the rest. And yes, there were signs. Katie saw them and tried to alert me to them. But I didn’t want to look. Instead, I conjured a fantasyland in my mind and tried to make the outside world conform to it.

I don’t think I’m the only parent who does this, by the way. Everyone takes a mental vacation every now and then. But in the case of special-needs parents, the stakes are usually much higher.

So we slid down the mountain a bit. It happens. But that’s okay. I’m back on the watch tower now.

Dude, That’s So Intense

iPad Boy

Isn’t this a cool picture? That’s our eight-year-old boy playing Fruit Ninja on the iPad. This is quite a common sight in our home. It’s just one of many contortions this kid does. He’ll fold himself backwards over the back of the sofa. Or he’ll have his legs crossed, yoga-style, and suspended in the air while he rests on his shoulders. Or he’ll curl himself up in a ball, with one leg sticking out at a highly improbable angle. Or a combination of many different poses. He’s never in the same position for more than a couple of minutes.

When he’s not twisted up, he’s like a perpetual motion machine—hopping, dancing, mock-battling, wrestling with his reluctant little sister. Dinner is always difficult for him. He’s usually the first one out of his seat (within three to five minutes), running around or hopping up and down. Even taking a walk can be an exercise (sic) in unique movement.

A Fun Walk

He’s not the only one, either. His next-oldest brother is very much the same way:

Upside Down Buddy

Now, this is a marked contrast to his younger brother who will, at odd times, simply plank.

Plank BoyKatie and I think he does this as a coping mechanism when he gets overwhelmed. He just shuts down for a few minutes, presses his internal reset button, and then he’s back at it again. He’s just as hyperactive as his brothers, but he has a different way of dealing with overstimulation.

Funny enough, though, if you put any of these kids in front of a computer on Minecraft, they can sit still, absorbed, for hours. They may be at odd angles again, but they’re still.

Isaac Newton Explains.

So what’s going on?

Katie and I think it’s related to something called Intense World Theory. Pioneered by a pair of neuroscientists in Switzerland, Intense World Theory posits that people with autism are hyper-aware of everything going on around them and within them. ASD folks feel everything so intensely—both physical and emotional—that their attempts to compensate need to be just as intense. It’s like an autistic version of Newton’s Third Law of Motion: For every action, there has to be an equal and opposite reaction.

So our armchair contortionists are merely reacting bodily to the busyness around them and in their minds. Their world is so intense and so full that they react to it in a similarly intense, involved way. Or it’s so intense that they need to shut it out at times, as our little one does, so that they can press their internal Reset button.

This also explains their ability to become so absorbed in the world of video games. It can be very loud and frenetic, but it is also limited and contained. Just a small screen (okay, small-ish) that they can turn on or off. And as noisy as it is, it’s also pretty predictable. So there’s an element of safety and comfort there. Of course, engaging in the virtual world doesn’t really help them get out their pent up energy. It only helps them suppress the need for it and, therefore, suppress their need to (over)react to it.

It’s Just Too Much!

All this can be kind of cute, but there’s another, more troubling, side to it.

Take my oldest son, for instance. He likes to go to Teen Gamers, a monthly gathering of middle- and high-school students hosted by the local library. It’s a place where kids can hang out, play video games, and have pizza, all under adult supervision. I don’t mind that it’s all about video games. Considering his social anxiety, it’s a golden opportunity for him to expand his social circle.

But as much as he enjoys himself there, as soon as he comes home, he hurries up to his bedroom and spends the next couple of hours in virtual seclusion. The same can happen after a long day at school or after we all go somewhere as a family. In fact, after just about any situation where he is out of his comfort zone, the boy high tails it to his room, turns off the lights, and burrows under the covers with his 3DS or his iPod Touch. The outside world is too much for him to handle, and he needs time to decompress.

Something similar happens with my older daughter, although with her, the reaction isn’t always delayed. She is just as likely to melt down right in the middle of a store or restaurant as she is to wait until we get home. That’s why we’ve come to expect her to spend a considerable amount of time in the bathroom at church on Sundays.

That’s how intense the world can be for these two. It can actually hurt to be engaged in it for too long.

Silly? Stubborn? Sullen?

I like this explanation a lot. It helps me see that my kids are not being antisocial—at least not on purpose. It also gives me some more insight into the way their brains are wired. And most important, it helps me adjust my plans and expectations.

I know, for instance, not to expect them to be able to handle a marathon day at Disney World. I should be happy to get three hours out of them—and that’s with one or two breaks so they can regroup. It also helps me understand what school is like for them. They spend six hours trying to maintain an ordered exterior while everything around them (and within them) feels like it’s set on overdrive. Of course they’re going to need some serious decompression when they come home—whether that means time on the trampoline or some mini-hibernation. There’s no way we should expect them to do anything productive like homework right away. And on days when there’s a lot of homework, we know we need to break it up into smaller chunks—or tell their teachers that they’ll finish it the next day.

Now, I know that they can’t expect this to go on forever. They’re going to have to find other ways to cope when things get too rough. There aren’t too many workplaces that have yoga mats or dimly-lit quiet rooms for decompression. And God help you if you take too many breaks! So we are trying to teach them how to increase their tolerance and find other, less obvious, ways to deal with all that frustration and overstimulation. It’s all part of living with ASD. They’re not being silly or stubborn or sullen. They’re just trying to survive.

Words I Wish I Never Heard: Perseveration

Poodle (our favorite nickname for our six-year-old girl) has tumbling class every Friday at 5:00. She is a very flexible, high-energy little sprite, and she loves the chance to jump, roll, run, and play with other kids her age. The place where she goes is an easy fifteen-minute drive from our home, and she’s been there a number of times. Still, the following sequence of events happens just about every Friday afternoon.

4:15 p.m.

Poodle: Mommy, I have to get changed for tumbling. I don’t want to be late.

Katie: We’ve got lots of time, Poodle. I’m in the middle of something. I’ll help you in a few minutes.

Poodle: No, Mom. I don’t want to be late. You have to help me now.

Katie: Hang on just a couple more minutes. We won’t be late. I promise.

Poodle (her voice quavering a bit): Okay. I just don’t want to be late.

4:20 p.m.

Katie: Okay, Poodle, let’s get you dressed. Get your leotard from your room and bring it down here.

Poodle: I can’t do that! The boys will see me.

Katie: No they won’t. We’ll go in my bedroom and close the door.

Poodle: Are you sure? I don’t want the boys to see me naked.

Katie: I promise I’ll close the door. I’ll even lock it if you want.

Poodle: Ohhhh, Mommy, I don’t know. I don’t want the boys to see me naked.

Katie: I promise they won’t. Now get down here so we can get you changed.

Poodle (nervously): Okay. I don’t want the boys to see me naked. You’re sure we won’t be late?

Katie: I promise.

4:25 p.m.

Katie: Go get your Crocs so we can get going.

Poodle: I don’t know where they are. Let’s just go. I don’t want to be late.

Katie: It’s okay, Poodle. We have lots of time. Go and find your Crocs.

Poodle: No, Mommy. I don’t want to be late. I can’t be late. They won’t like me if I’m late. Let’s go!

Katie: I don’t want you going outside without any shoes. It’s raining, and it’s chilly. Find your Crocs, and we’ll get going.

Poodle: Please, Mommy! I don’t want to be late!

Katie: Tumbling is only 15 minutes away, and we have more than 35 minutes to get there. We’ll be fine.

Poodle: No, Mommy, no. We need to go now. I don’t want to be late!

Katie: Fine! Get in the car. I guess I can carry you into the tumbling studio.

Poodle: Okay. I don’t want to be late.

4:30 p.m.

Poodle (wringing her hands): Mom? How long before we get there? I don’t want to be late.

Katie: Fifteen minutes.

Poodle: Is that enough time?

Katie: Yes, it is. We’ll get there with fifteen minutes to spare.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure. Look how far we’ve gone already. We’ll be there with lots of time.

Poodle (suspiciously): Okay, if you say so.

4:33 p.m.

Poodle: Are we getting close? I don’t want to be late.

Katie: Yes, we’re getting close.

Poodle: Will we be there on time?

Katie: We’ll be early.

Poodle (twisting a lock of her hair): Are you sure? I don’t want to be late.

Katie: Yes, I’m sure.

4:40 p.m.

Poodle: When does tumbling start?

Katie: In twenty minutes.

Poodle: Will we be there in time? I don’t want to be late.

Katie: I told you already, we’ll be early. We’re almost there.

Poodle: We’re not going to be late, are we?

Katie: No, we’ll be early.

4:44 p.m.

Poodle: Are we going to be on time? I can’t be late. They don’t like it when I’m late.

Katie: Look up there. See that traffic light? The studio is just beyond that light. We’ll be there as soon as the light turns green.

Poodle: No we won’t. We’re going to be late.

Katie: Don’t worry, Poodle. When the light turns green, we’ll be there.

Poodle: You’re going to go as soon as the light turns green?

Katie: Yes, I will. Then we’ll be at tumbling.

Poodle: Ohhhh, how much time do we have now? Are we going to be late?

Katie: We have fifteen minutes. All we have to do is cross this intersection. Then we’ll be there.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure, Poodle. We’ll be there in less than a minute.

4:46 p.m. [The light turns green.]

Poodle: How much time now, Mommy?

Katie: Fourteen minutes.

Poodle: Are we going to get there in time?

Katie: Yes, we’re pulling into the parking lot right now.

Poodle: We won’t be late?

Katie: No, we have lots of time.

4:47 p.m. [Katie carries her, shoeless, into the studio.]

Poodle: We’re not late, are we?

Katie: No, we’re not.

Poodle: That was close, wasn’t it?

Katie: I guess so.

Poodle: Okay. Are you sure Daddy is going to be on time to pick me up?

Katie: <sigh> Yes, I’m sure.

Mountain Climbing for Christmas

montaintop castle

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.