Category Archives: Spirituality

Serenity Now!

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As my kids are getting older I’m finding myself in an unexpected position. You see, five years ago, when the diagnoses were coming fast and furious, I went through somewhat of a crisis of faith. So many challenges were cropping up. Fears for my kids’ futures began to loom large. I grieved the loss of my vision for my family. But then came a period of relative calm. I came to a clearer understanding and acceptance of our situation. I resolved to fight for my kids’ rights at school. I determined that nothing would come between Katie and me as we took up the challenges that we faced. I had, to a large degree, made peace with it all. Yes, it was going to require extra work to help our kids be successful, but by gum, we were going to do it. We were going to be the autism family!

But there’s something about this autism thingy that took me by surprise. It shifts and swirls. It’s never the same thing year after year—or month after month. I’m finding myself surprised at some of the challenges my kids are facing as they get older. Some are completely new, while others are just more intense versions of what we saw a few years ago.

So while I honestly have made peace with a number of aspects of our family’s make-up, I’m also feeling more at war with others. Not war as if I’m fighting against my kids, mind you. More like a war within myself in terms of embracing our latest “new normal.” Let me try to explain.

Serenity Now . . .

I’ve made peace with the fact that my kids are going to be different. In many ways, I enjoy their differences—their quirky take on life, their brutal honesty, the innocence with which they approach life. I’ve also made peace with the fact that I’m going to be advocating for them and teaching them to advocate for themselves for quite a few years to come. Even though it sounds like a cliché, different, not less really does describe our kids as well as the way we look at them.

I’ve made peace with the fact that my family is going to stick out, and not just because there are so many of us. For instance, on those rare occasions when we go out to eat, I’ve come to expect the unusual. Like one kid will get up and start wandering around the restaurant because he or she can’t sit still. Or another will have to go stand outside halfway through the meal because of sensory overload. Or a third will end up curled up on his chair or under the table to avoid the noise. People will stare, but it doesn’t bother me anymore.

I’ve made peace with the fact that members of our extended family, well-intentioned and big-hearted as they are, won’t always get it. It doesn’t bother me that I’ll probably be explaining things until the day I die. It doesn’t bother me, either, when one of them offers unsolicited advice based on what works for his or her neurotypical child. It doesn’t even bother me that our kids aren’t involved in all the extracurricular activities that their peers enjoy. That’s probably because I’ve also made peace with the fact that we’re going to be spending more time in therapists’ waiting rooms than on soccer fields and tennis courts.

Finally, I’ve made peace with the fact that money will always be tight. With therapies and related health problems, our expenses are more than the average family’s. Plus, we’ve got six kids!

Insanity Later . . .

I haven’t made peace with the thought that our kids still have a long way to go. Now that our oldest two are well into adolescence, I’m getting a sense of the wild ride that comes when you mix autism with hormones. I’m also getting glimpses of the difficulties they’ll face as they lurch toward independence. I don’t know if I’ll ever be ready for those. Schools have behavioral counselors. Churches usually are welcoming, understanding places. But employers—well, that’s a completely different story.

I haven’t made peace with the other diagnoses that have come attached to our kids’ ASD. It’s bad enough that they have social and communication deficits. Do they really have to deal with crippling depression, intense mood swings, OCD, and emotional dysregulation? Does it really have to be so hard for them?

I haven’t made peace with the fact that many of my kids will find it hard to establish and maintain relationships in the real world. The thought of them being alone kills me—even more than the thought that some of them may never leave home. It kills me to think about all the people who will overlook how cool and kind and sharp and loveable our kids are. Our kids deserve to be loved!

Finally, I haven’t made peace with the way I let our ASD-dominated life close in on me. We don’t often do things as a family, because some of our kids will have a hard time. We don’t live too far from Washington, DC, with sites like the White house or the National Air and Space Museum. But a few of our kids simply cannot handle crowds. So we don’t go. Our hometown is surrounded by mountains and woodlands. But a few of our kids become very anxious when exposed to the sounds and smells of nature. So we don’t go. Just the idea of taking some kids to the movies makes me break into a cold sweat. I know there are ways to help them through all of this. I also know which ones might do well in a museum and which ones might do well in the woods, so I can always divide and conquer. But I just don’t have the fight in me. I’m often too worn out by the daily challenges of ASD life to even consider trying something new.

Dammit!

I know, I know. I’ll probably end up making peace with these things, just as I did with the others. I know, too, that God isn’t finished with me or my kids yet. But dammit, wouldn’t it be nice to catch a break every now and again? Does everything have to be so difficult?

I guess in some ways I’m like every other parent. I want the best for my kids, and I hate it when they struggle. The only difference is that my kids have more struggles than the average kid, so I have to be stronger to help see them through it.

And believe me, I will. Just let me catch my breath first.

Dispelling the Cloud, Removing the Chip

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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

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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

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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.

Mountain Climbing for Christmas

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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.