No Rules, New Rules, One Rule

IMGP4810

So last night, the Fourth of July, held a minor victory as our oldest kid did pretty well facing his fear of fireworks. All the kids did pretty well, in fact, with each one showing a little more improvement in the sensory processing realm. Plus, they got to stay up later than usual. Mind you, we didn’t go anywhere for fireworks. We’re just talking about the small-time crackers and roman candles that some folks in the neighborhood set off. Still, progress is progress.

Anyway, this morning we ended up paying for the late night and the extra stimulation. As we were trying to get everyone ready for Mass, we were presented with two very strong tantrum-melt downs from two different kids, one stubbornly tired kid who could barely keep his eyes open, and another one exceedingly anxious about the her siblings’ potentially bad behavior in church.

We tried to roll with it. We really did. But after a while we realized that Mass just wasn’t going to work. It was too risky. So we played hooky. Sort of. Rather than go to our local church, which is only a half-mile away, we loaded everyone in the van and drove twenty miles to Mount St. Mary’s University–my alma mater of a Catholic college.

A Mini Pilgrimage.

The van is a safe zone. Each of them can enter their own world, whether by staring out the windows or by putting on their head phones and listening to music or by taking a quick nap. It’s one way to help them press the reset button, and that’s pretty much what happened. By the time we arrived, they were doing better. Not great, but better.

We spent about an hour there, walking the nearly empty campus and visiting the Grotto, which is a replica of the shrine to the Virgin Mary at Lourdes, France. We ended with a visit to the grotto chapel, where I had the kids sit as quietly as possible for as long as possible (5 minutes) and told them to try to pray. Then we read the Gospel reading they would have heard if they had gone to Mass, I said a few words about it, and we left. Nothing big. Nothing dramatic. And no other people around.

The kids did pretty well overall. We did have to deal with some sensory issues and low-level anxiety. And our toe-walker started to complain about pain in his legs from all the uphill walking. But I was glad that they got the message that Sunday is more than just another day. It’s still the Sabbath. It’s still the day that we honor God as a family. They saw that the alternative to missing Mass isn’t a free pass to video games.

A New Rule Book.

I don’t like skipping Mass. I really enjoy the closeness to God that I feel there. And for the most part, I can see how it helps the kids. But as far as I could see, there really wasn’t an alternative.

This is one thing that I’ve learned again and again as an autism parent: you have to learn to live by a different set of rules. It seems that everything we do—from church services to school, to recreation to family gatherings—we do differently. And there are times that we have to throw out even our modified rule book. But that’s okay. Because the only rule that really matters is this: Love and accept your kids where they’re at, and they’ll be more likely to follow where you want to lead them.

A Wibbly-Wobbly Ball of . . . Stuff

Wibbly-Wobbly Ball

Before we start, take a look at this very short clip from Doctor Who, in which The Doctor explains the true nature of time. Trust me, it does relate.

That was pretty good, wasn’t it? Now for the explanation.

In a recent blog post, ASD guru and Aspergers role model John Elder Robison tackled the use of terms high-functioning and low-functioning when it comes to describing people with autism. Here’s what he said:

Much has been written about calling people high functioning or low functioning. With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading. . . . Suggesting that “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.” People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago. I didn’t like it then and I don’t like it now.

Robison then goes on to talk about how dividing people up based on their “functioning” status misses the point of how autism works:

We now know that our functional level changes with time and other factors. As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70. It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

As I said in my last post, my kids are showing me that autism can shift and swirl over time. Not for nothing is it called a developmental difference. It’s a matter of how and when a person develops social, cognitive, and communication skills. Some people develop more slowly or more unevenly than others. Some have persistent, nagging glitches in their development that affect them throughout their lives, while others overcome some challenges as they mature—only to find new challenges crop up. For many, it’s a mixture of both permanent and emerging attributes. So it’s awfully simplistic to reduce such a complex thing as autism to a question of high or low functional skills.

Forget the Spectrum.

But I want to go one step further. I want to suggest that along with abandoning the high- versus low-functioning distinction, we should scrap the image of a spectrum altogether. When we use this term, we evoke a kind of linear gradation, with some people lower down, or farther back, on the scale than others. But one problem with this approach is that people are assigned their place on that spectrum according to different criteria. Is it IQ? Is it verbal communication? Is it eye contact? Social skills?

Someone with limited verbal skills may well have an off-the-chart IQ. Or someone who can appear gregarious and outgoing in public may be masking significant social struggles, only to melt down in private. Where would you place each of these people on the spectrum? How would you decide? And most important, what purpose does it serve?

The Autism Ball.

Rather than talking about a spectrum, I’d like to suggest we talk about a sphere—a big ball of wibbly-wobbly, autism . . . stuff. There’s no low or high end. There’s no up or down or forwards or backwards. You just happen to be somewhere on that sphere, and your fellow autistics are somewhere else on it. No one is farther along than anyone else. No one is of greater value than another because he or she is “higher functioning.”

This is why I like the Doctor Who clip. It paints the picture of time, or in this case autism, as something that isn’t static but full of life and energy. And that makes it unpredictable: wild and mysterious, wonderful and dangerous.

So let’s imagine a ball that contains all the possible symptoms and manifestations of autism, all wibbling-wobbling around. Things like hand flapping, mind blindness, rigid thinking, sensitivity to loud noises, toe-walking, perseveration, narrow focus of interest. Imagine that ball also containing the comorbid conditions connected to autism: OCD, depression, ADHD, ODD, etc. Finally, imagine that this ball contains the positive traits of autism: laser focus, attention to detail, unflinching objectivity, a quirky imagination, a strong sense of justice, and an innate innocence.

Now, imagine your own ASD profile as a line running through the ball in one end and out the other end. As that line travels through the ball, it intersects with the various ways your autism manifests itself—not all of the traits, just the ones particular to you. No two lines are in exactly the same place, and no line is in a better position than another. They’re just there, marking out their own individual quirks and challenges, strengths and gifts.

High? Or Low?

All of this theorizing has a point. In an earlier post, I described how misleading the term “mild autism” can be. I gave some examples from my own kids of how difficult things can be for them, even though they would be considered high-functioning. As Robison said, people with high-functioning autism still have autism, and it still affects them profoundly.

We recently went through a rough patch with one of our kids, in which we saw just how much he keeps things hidden inside of himself, especially his awareness of how different he is and how hard it is for him to feel like he fits in. But on the outside, he presents as a clever, quick-witted, amiable boy. So while he seems very high-functioning, a lot of “low-functioning” stuff is going on underneath the surface: depression that can keep him in bed for two days straight, lack of empathy, misunderstanding of other people’s emotions, learning glitches, and an inordinate need for physical stimulation. He can navigate the outside world, but only for a time. Then he shells up when he’s home or alone. Where would you place him on the spectrum? Is he low-functioning or high-functioning?

Then there’s another one of my boys. You need only five minutes with him to “see” the autism: his odd gait, his lack of eye contact, his unusual speech patterns, his stimming, and his tendency to disappear within himself for a time. But hidden behind all of these quirks and tics is a very intelligent, sensitive child with keen insights into his own behavior and the people around him. Where does he fit on the spectrum? In the higher-functioning part of the line? Or the lower? Why?

Get on the Ball!

Mind you, most of this is irrelevant to me. I just look at them as my kids, with all of their strengths and weaknesses, their beauty and awesomeness, and work with each of them based on who they are. But it does make a difference in the universe outside of our home. It makes a difference when I attend IEP meetings or when I have to explain some unusual behavior to a friend or neighbor. It also makes a huge difference in the way society treats people with autism. If you’re a Bill Gates kind of autistic, you are given as many opportunities as you want. But if you’re nonverbal or if you’ve got some other trait that people might call low-functioning, you’ve got fewer chances to show just how awesome you are and what you can accomplish. And that’s sad, because you risk accepting a bleaker narrative about yourself and your potential than if you were given the opportunity to shine.

If we can get away from defining people based on their so-called levels of functionality, we can get closer to seeing each person as a precious individual with his or her own unique set of talents. We will stop assigning each person a value based on what he or she “contributes” to society. Each person is a gift, and you don’t assign a value to a gift based on its usefulness. You treasure it for what it is: a token of love from the One who gave it to you.

So get off the line and get on the wibbly-wobbly ball!

Dispelling the Cloud, Removing the Chip

Oriole

So I was out of town a couple of weeks ago at a meeting of the Catholic Biblical Association. It’s an annual gathering of biblical scholars that I attend as an “associate” member—someone who isn’t really a scholar but who works with the Bible on a regular basis and who would benefit from hearing research reports from the full members. One of the things I enjoy about this gathering is the collegial atmosphere. For the most part, everyone is treated equally: the great, the near-great, and the just plain silly. You are not looked down upon if you don’t have a PhD; you are welcomed just as much as the most celebrated, published scholar.

At the conference, I had the pleasure of sharing dinner with an old friend whom I hadn’t seen in a few years. Like the others, he is a respected scholar and researcher, but he is also a born teacher who brings a pastoral approach to his studies. Plus, he’s from Canada, so he has niceness encoded into his DNA. The last time we met, I had told him a little about our fourth child, whose high-functioning autism we were just learning about. This was our first diagnosis. We didn’t know about the others until later on. So it was only natural for him to ask me this time how our boy was doing and how the rest of the family was adjusting to his uniqueness.

That’s when the discomfort began. Should I tell him that all six of our kids are on the spectrum? Do I have the emotional energy to give a minor tutorial in the ins and outs, the mysteries and challenges of ASD? I’ve been down this road before with a lot of other people, and I was getting tired of it.

I debated changing the subject, but I respected this fellow too much to stay shallow. So I dove in, with a lump in my throat.

An Impromptu Community.

As it turns out, I didn’t have to worry. My friend, along with a couple of others at our table, listened carefully and asked insightful questions. They showed genuine concern for our kids. They shared their own experiences and understandings of autism. We ended up talking together about how God is and is not at work in challenging situations like mine. So what began as a general “How’s it going” conversation grew into a shared reflection on mercy, grace, compassion, justice, and perseverance. It was as if we had formed an impromptu community of faith.

Mind you, I did feel somewhat uncomfortable being the center of attention for so long. I was afraid that the conversation would decline to the kind of pity and mock-sympathy that I detest. But another part of me thoroughly enjoyed the conversation. There was something distinct about it. Everyone there was immersed in Scripture and its teachings, so our discussion had a strong faith dimension to it. Of course, not every Scripture scholar is a saint, but it was clear that these people had taken Jesus’ words to heart and were striving to live in the love of God. That’s no small thing.

The Cloud and the Chip.

Rather than feeling drained, as I usually do after “raising autism awareness,” I left the conversation feeling energized and encouraged. And that got me thinking. You see, I’m not used to having such genial discussions about my kids—and especially, not with people who don’t know me well. I have spent so much of my time the past few years advocating for them in a cash-strapped school system and among neighbors who (with a few exceptions) didn’t have patience for anything outside the status quo. So I wasn’t expecting such a kind reception of my story.

Add to that the fact that I didn’t have that many friends in Florida. Katie and I spent so much time with our kids, and that made it hard to meet new people. Plus, we lost a couple of friends due to our kids’ challenges, and these losses left me defensive, guarded, and cynical. I didn’t want to get to know anyone else. “Why bother?” I’d think. “It’ll only turn out bad.” I didn’t realize it until after having left Florida, but I had spent the better part of four years walking around with a cloud over my head and a chip on my shoulder.

A New Beginning?

That seems to be changing now. A couple of months ago, we moved back to Maryland, where Katie and I both are from. It’s something we had been wanting to do for quite a while, but never had the chance. We knew that Maryland schools were better, and most of our family is there. So when the opportunity finally arose for me to be transferred back to my company’s home office, we grabbed it—and we’re really glad we did. The school year hasn’t started yet, but all of our preliminary meetings have been extremely encouraging. Accommodations we could only dream of in Florida were offered to us without our even having to ask for them. Programs are in place here that we had never heard of down South—programs to help ASD kids not only survive but thrive.

What’s more, and I don’t exactly know why, there seem to be a lot more families with ASD in our new hometown. Maybe it’s because of the higher population density. Maybe it’s because there are more doctors here who are trained to spot the signs of autism. Or maybe the parents are just better informed. Whatever the reason, that increase in numbers brings an increase in awareness and acceptance. So we’re feeling like we fit in here better than we did down there. It doesn’t feel as lonely.

And then there’s family. All of my siblings are within an hour’s drive, and most of Katie’s siblings are even closer. Plus, Katie’s parents are just a ten-minute walk away. So there’s a lot more support where we are now, and our kids are surrounded by more than twenty cousins ranging from age three to twenty-six.

All these factors have helped me relax a little bit. With increased awareness and acceptance, our kids have a better shot. With family around, we have ready-made friends and social situations. With a more accommodating school district, we hope to have fewer fights and less tension. A few days ago, I wrote that our family’s future is beginning to look brighter. Maybe I’m just fooling myself. Maybe we’re in a bit of a lull right now, a respite between crises. Or maybe with this fresh new start Katie and I are able to see our situation and our kids in a different light. Whatever the case, I’m enjoying it—almost as much as I enjoyed my conversation with those biblical scholars who reflected a God who loves and cares for his people.

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.

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.