I’m so proud of my oldest daughter. All by herself, without telling us, she produced this video for a project in her Aspergers-only school. She doesn’t often tell us what she’s thinking—not uncommon for any 13-year-old girl and even more prevalent with girls on the spectrum—so I was blown away when I saw this.
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.
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.
autismblues 