Solidarity from Rome

It took me a couple of days to find it, but here it is: the Vatican’s message to families touched by autism. On every April 2, World Autism Awareness Day, the Pontifical Council for Healthcare Workers publishes something like this. On one hand, we can read these official statements as little more than that—official, almost boilerplate language that can be applied to any other disability. All you have to do is swap out “autism” with “cerebral palsy” or “depression” or some other brain disorder. Or we can read these messages as words from the heart, intended to offer something personal to the ones affected by this disorder.

I choose the second option. And not just because I happen to be a Catholic. When I read Archbishop Zimowski’s words, I saw that he really does get some of the challenges of ASD and of having a child on the spectrum.

More Than Just Loss.

For one thing, he spoke of the feeling of “loss,” but also of “amazement,” that parents of ASD children can experience. And that strikes me as right. Hearing the diagnoses for my kids—one after another after another—was like a stab in the heart each time. Especially when we got the news the first time, I was stunned. “Loss” was definitely the first thing I felt. The sense that this beautiful son of ours had lost his future. The sense that my wife and I had lost any hope for having a full relationship with him. The fear that he would lose any opportunity for an independent life. And, yes, the fear that we had lost our future as a happily retired couple with no worries about our grown children.

But at the same time, there was a sense of amazement. It didn’t happen all at once. But over the next few days, as I got used to the word “autism,” I was amazed at how beautiful, loving, and genuinely happy my boy was. (Mind you, he was only three years old at the time, and every kid at that age is really cute. But still. . .) I was amazed at how much more my heart went out to him. I was amazed at how deeply he could respond to me, even though he had yet to speak a word and at times appeared lost in his own world. I was amazed that, even in the midst of my loss, I never thought it was completely hopeless. Somehow I knew that God had our boy in his hands and that a path would open up before him over time. And slowly, through therapy, our own understanding and advocacy, and a growing awareness about ASD in the broader world, I am beginning to see this path—for him as well as for his other ASD siblings. Finally, and most important, I am amazed at how much these kids show us the face of Christ.

Solidarity.

The other thing that Archbishop Zimowski speaks about is the sense of solidarity that the Church feels with people on the autism spectrum and their families. It’s a pledge to walk with us, alongside of us as brothers and sisters. Not in a patronizing, pitying way but as our peers who see the value, the beauty, and the vital role of those struggling with this disorder. This, I think, is one of the greatest gifts that the Church can give to families like ours. In a world that tends to assess people’s worth based on their material contribution to society, the Church is telling us that our kids offer something just as important, if not more so. I wrote about this just a few days ago, and it has been sticking in my mind ever since.

The good archbishop knows he cannot offer expert help. He knows he doesn’t understand our challenges half as clearly as we parents do. But he also knows that we don’t expect that from him, or from the Church as a whole. We’ll find the experts elsewhere. We’ll find the clinical help we need from, well, clinicians, not priests or bishops. As Peter told the lame man, “Silver and gold I do not have, but what I have I give to you: In the name of Jesus, stand and walk.”

We may not find therapy in the Church, but we will find acceptance. We know we will find people who can see our kids in the same way they see every other child: as a gift and a mystery. Of course, this doesn’t always happen. No parish is perfect, after all. But that’s what makes these words so much sweeter. We know we belong. We have the words to prove it. And we have the Spirit behind the words to remind us whenever we feel otherwise.

So on behalf of Katie and my kids, I’d like to say “Thank you” to Archbishop Zimowski for his message. I’d also like to say “Thank you” as well to Pope Francis, who in just the few weeks since his election has done so much to show the world what solidarity really looks like. And I’d like to say “Thank you” to every priest and parishioner who has ever welcomed us and shown us the love of Christ.

A Different Kind of Card Game

A couple of days ago, I wrote about my 12-year-old girl’s hour-long search for her purse—a quest that made her late for school and me late for work. Well, I want to follow up with something that happened as I drove her to school that morning.

As we backed out of the driveway , she picked up my wallet and began rifling through my cards: driver’s license, insurance ID, business cards, credit cards, etc.

“What are you doing?” I asked her.

“I’m reorganizing your cards.”

“Why? They were perfectly fine the way they were.”

“I know. But this helps me work out my anger.”

Pressure Valves.

I didn’t pursue it right then and there. I was just glad we were heading in the right direction without any major incident. But later that evening, I asked her about it.

“I was angry that the purse was right there all along, and I passed by it about thirty times without ever seeing it,” she told me. “I figured that if I could mess up your cards and put them back in the right order, I would feel better.”

Evidently, it worked. She had a pretty good day at school—which is to say that Katie had to field only one anxiety-laden phone call from her. She did okay on her homework, and the evening went off without any major melt downs.

If that’s all it took for her to get right with the world, I was more than happy to oblige. Heck, I’d stack my wallet with a whole deck of playing cards!

While this kind of behavior is quirky, it’s not uncommon for my daughter. Actually, I’m glad to see her doing it. It’s a lot better than other habits she has had over the years. For instance, when she was a very little girl, she used to do what she called “belly exercises”—a rhythmic motion, akin to dry humping—for nearly 20 minutes at a time in the middle of the afternoon. We never knew what to make of it, especially when she would emerge from the exercises sweaty and out of breath. But our pediatrician dismissed it, so we never followed up. (We have since changed to a doctor who actually knows what ASD is and has experience working with kids on the spectrum.)

Then there was the phase when she had to take all of her Littlest Pet Shop dolls to school in a purse so that she could reach in and touch them when she was feeling stressed out or lonely. Or the habit, which persists, of taking a suitcase filled with her Webkinz plush animals whenever we go on a day trip or a vacation. Oh, and she still plays with water. She’ll dunk her face in the bathroom sink or fill up a small hole she dug in the back yard so that she can squish her feet in the mud.

Defusing by Diffusing.

Anyone who has a child on the autism spectrum will identify with these types of behavior. They’re all the unique ways ASD kids will diffuse tension. When they’re not melting down, that is.

What’s there to diffuse? Plenty. There’s the tension that comes from sensory processing glitches. Most of us don’t get bothered by things like fluorescent lights, the sound of traffic, or other sensory input that is part of our everyday, noisy existence. But many kids on the spectrum are highly attuned to these things. One of my kids, for instance, can’t stand the feel of denim. The only pants he will wear are sweats—and not the shiny kind. There’s also the tension that comes from having to deal with people. Social communication can be hard on ASD kids, because many of them have a hard time reading the subtleties of body language and vocal inflections. It’s like deciphering hieroglyphics, and it’s exhausting. And finally, there’s the tension that comes from just plain knowing how different you are. As I mentioned in an earlier post, the co-incidence of ASD and depression or anxiety is very high—mainly stemming from this sense of otherness.

So with all of these factors at work, it’s no wonder that folks on the spectrum try to find ways to relieve the pressure that builds up. Temple Grandin has her squeeze machine. Bill Gates rocks back and forth. A young man in Great Britain carries a well-worn plush lion around with him. And my little girl takes mud baths and reorganizes cards.

Here’s what I like about what I saw in the car Tuesday morning. My daughter found a pretty creative way of acting out without, well, acting out. This little episode also shows how intelligent and insightful she can be. She knows she has Aspergers. She knows she’s different. She knows she has challenges that other kids don’t have. And while it can make her sad and frustrated, it has also moved her to find ways to deal with it. I also like the fact that she is experimenting with strategies that don’t get her in trouble or that don’t mark her out for teasing or bullying from her peers. And finally, I like the fact that she’s doing this on her own, without any coaching from her parents or her psychologist. Mind you, this doesn’t happen all the time. There are many times when she will act out more dramatically and more emotionally. But the fact that she worked this one out all on her own makes me smile. It tells me that she will find her way.

Now, if I can just get her seven-year-old brother to stop staging mock battles with his little brother when he’s uptight. Or her nine-year-old brother to stop sucking his thumb. Or her four-year-old brother to stop throwing things all around the house. Or her big brother to stop chewing his finger nails down to the cuticles. Baby steps, Leo. Baby steps.

A Missing Purse, A Crisis Averted, and a Lesson Learned

Today is World Autism Awareness Day. It’s the one day out of the year when skyscrapers and other monuments around the world are bathed in blue light as a way of raising awareness of the growing epidemic of autism spectrum disorders. And our home will be no exception. After work tonight, I’m going to swap out the light bulbs over our front porch and on our garage doors so that our house will be set apart by a soft blue hue all month long.

So it’s only appropriate that I started out Autism Awareness Day with a little episode that made us aware of the challenges of ASD—and that gave us a brief lesson in how to help.

The Case of the Missing Purse.

My twelve-year-old daughter, who has Asperger syndrome, wouldn’t go to school this morning. At least not until she found her purse. Why? Because her purse contained her spare set of earrings. And she was deathly scared that the ones in her ears would start bothering her in the middle of the day, and she wouldn’t have anything to replace them with.

Never mind that her earrings were perfectly fine. Never mind that her ears were perfectly fine. She had got the idea in her head that something bad might happen, and she couldn’t let it go. Typical aspie behavior: Your brain gets stuck on something, and it’s nearly impossible to get it unstuck.

Lord knows I tried this morning. I looked in all the usual places. Nothing. I looked in all the unusual places. Nothing. I suggested even more unusual places where my daughter could look. But she had become so frustrated and anxious at the thought of not finding her purse that she had curled up on our bed, tense and sobbing. I tried reasoning with her. “Why don’t you go to school, and Mom and I will keep looking. When we find it, we’ll bring it to you.”

“You don’t understand. I can’t go until I have that purse!”

“But you’ve already missed a lot of school, and you have exams this week.”

“I don’t care. I need that purse! I won’t go without it!”

A Fresh Start.

Not wanting to have two kids tardy, I took her older brother to school and came back home. Katie, in the mean time, took on the task of getting the other kids ready for elementary school—and dealing with a couple of minor ASD-related crises from them.

When I got back, I laid down next to my daughter and stared at the ceiling for a couple of minutes. “Let her get used to me being here. Just breathe. Don’t push her too hard, or she’ll melt down, and then all bets are off.”

After a short while, she uncurled a bit, and began verbally retracing her steps from the last time she had the purse. It’s something Katie and I had tried to get her to do before, but she had to decide to do it herself. “Okay,” I said. “Let’s look around all those places.” This time, she actually got up and began searching on her own—and far less agitated, too.

It took nearly an hour, but we found the silly thing. It was one of those “hidden in plain sight” things that makes you embarrassed you hadn’t seen it earlier.

Problem solved. Crisis averted.

A Lesson to Be Learned.

But here’s the really quirky part. Once she found her purse, she immediately changed her earrings, put the purse down, and gathered her books. “I’m okay now,” she told us. “I can go to school.” No spare set. No need to carry the purse. No fear of irritation or infection. She had forgotten why she needed the purse. Her brain had gotten so stuck that she didn’t even know what the initial problem was!

Neither Katie nor I wanted to argue with her at this point. We were just glad that the episode didn’t escalate beyond general anxiety and obsessive thinking.

We were also glad that we were able to stay relatively calm—a key ingredient in helping her avoid a full-scale melt down. Episodes like this don’t always end so pleasantly. Especially if we parents lose our cool.

So on this day when advocacy groups everywhere are raising awareness, my little girl contributed to the cause. She made us aware of how unpredictable ASD can be. She told us to expect the unexpected. And she showed us that a little kindness and empathy can go a long way.

If only the rest of the world could learn this lesson!

Pint-Sized Prophets?

Pope-holding-Dominic

Just this morning, I came across a story written by Paul Gondreau, a theology professor at Providence College in Rhode Island. He and his family happened to be in St. Peter’s Square in Rome on Easter Sunday and were present when Pope Francis toured the Square in his popemobile. The picture you see here is of the pope embracing Gondreau’s eight-year-old son, Dominic, who has Cerebral Palsy.

It was a moving sight, and it made its way to the Internet and numerous news outlets around the world. (Not unlike his first popemobile ride, when he also had the car stopped so that he could give a special embrace to a disabled man in the crowd.)

In so many ways, the picture speaks for itself. But Gondreau’s brief article on the event makes a couple of moving and important points.

First, he relates a comment that a woman in the Square made to his wife afterward: “You know, your son is here to show people how to love.” Gondreau talks about how this comment turns our everyday thinking on its head. Parents of children with disabilities are called to give more than the usual amount to their kids: more help, more guidance, more advocacy, more money, more time, more therapy, more of everything. And we often focus on all that we have to do or all that we have to give. But what Pope Francis highlighted—and what Gondreau picked up on—was how much our children give to us. While we’re busy giving our children all they need, they are busy giving us huge lessons in what it means to love. They’re teaching us how to give and give and give—not by demanding it of us but by drawing it out of us. Just as Jesus gave himself for us not because we stormed heaven and demanded our rights but because his heart warmed at the sight of us, and he couldn’t help but become one of us and share in our pain and need.

Second, by framing the whole thing in terms of a vocation, Gondreau finds a way to answer the “why” question that every parent of a special-needs kid asks. Why did this happen? Why him and not someone else? What did he (or we) do to deserve this? In my very first post on this blog, I wrote that asking “how” is far more helpful than asking “why.” Well, I’m not so sure any more. I think you need to be working on the “why” if you want to know “how.” And to say that it happened because God wanted more professors in the art of love is clearly one very encouraging, hope-filled answer.

Of course, that raises the possibility that God actually gave your child autism or cerebral palsy or some other genetic disorder. In fact, it almost pushes you toward that kind of conclusion. I don’t want to get into that really thorny question here (perhaps later), but my own experience tells me that when I look upon my kids—specifically with their challenges and disabilities—as God’s gracious gift to me and to the world, my heart softens. I find more patience, more peace, and a renewed willingness to fight for them. I find myself, too, looking upon other people—especially those who don’t get my kids—with more kindness and compassion. Bitterness recedes, and fear diminishes. Hope grows, along with a little more wisdom and clarity on how to proceed through each challenge that we face.

Early in his article, Gondreau referred to Mother Teresa of Calcutta, who talked about performing “small acts with great love.” That’s one way into this vocation. But I like another saying of hers even more. She called it the “Five-Fingered Gospel.” Carefully counting out each finger on one hand, Mother Teresa would tell people, “You. Did. It. To. Me.” Everything we do, especially for the poorest and most vulnerable and most needy among us, we are doing to Jesus. She spoke often of meeting Jesus “in the distressing disguise of the poor.” For her, that was the heart of the Christian message, and I’m beginning to agree with her. I can’t tell you how helpful it is to know that in caring for my kids, especially in the midst of a huge melt-down or in some other difficult moment, I have the privilege of meeting almighty God. If my heart is right and my mind is clear, I imagine myself caring for Jesus at that moment, just as people in the gospels washed his feet; wrapped him in swaddling clothes; and took his exhausted, wearied body down from the cross and laid it in his mother’s lap.

None of this diminishes the pain and the difficulties, of course. But maybe it will help us learn how to love and accept the situations we are in rather than try to run and hide from them or get swallowed up in anxiety or anger. Imagine the kind of world it would be if the least and the most challenged among us were treated as gifts and not glitches—as prophets and not problems.

Happy Easter, everyone.