It’s All About Us

Video

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.

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.

Autism Blues Celebrates 1000 Ausome Things #AutismPositivity2013

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So here we are at the end of another Autism Awareness/Acceptance Month. This year, I discovered this really interesting site. It’s a “flash blog” called Autism Positivity. I’m guessing that a flash blog is something like a flash mob. It appears out of nowhere, does something really cool, and then disappears. The goal of this flash blog is to present 1,000 pieces from people touched by ASD—pieces that celebrate the positive side of the ASD constellation.

So what’s “ausome” about being an ASD dad? Simply put: my family.

• First, there’s my oldest, a thirteen-year-old boy with PDD-NOS. Socially, he’s catching up with his peers. He’s beginning to find his “tribe” in the heartless scrum that is middle school. He has a quick wit and a nimble mind. He also has a rich vocabulary. So what if he sometimes can’t distinguish between the literal and figurative speech some of his friends use? It’s helping him learn the ways of that alien species, the neurotypical adolescent.

• Then there’s my twelve-year-old daughter. She is as aspie as they come, and she knows it. And she owns it. And she uses it to her advantage as often as we’ll let her. She can retreat into her own rich, private world for hours but still come out of herself when she sees the need. She clearly marches to her own drummer, but she is beginning to show that she “gets” where her brothers and sister are at. Plus, she has my mother’s smile. What’s not to love?

• Then comes my nine-year-old son, whose Aspergers reminds you of Mozart or Albert Einstein. Intellectually, he’s got enough wattage to light up the Manhattan skyline. He can’t stand to wear denim jeans (“They hurt!”), and he is never happier than when he’s on the computer building new worlds in Minecraft. A passionate soul, he has an exaggerated sense of justice, taking deep offense at every joke or slight. But that same passion can fuel him for hours as he builds complex Lego structures without a blueprint or develops a new outside game for his younger siblings to play.

• Next up, my seven-year-old son, who has high-functioning autism. He has the brightest smile in the universe and the sweetest disposition—when he’s not melting down. And when he does melt down, he recovers with amazing speed and is very quick with a repentant hug and heartfelt words of contrition. He doesn’t quite know how to make friends on the playground yet, but it doesn’t bother him. He’s content just to swing on his own, staring into space dreaming his dreams.

• Then there’s my five-year-old little girl, who has ADHD and may well be aspie. She’s an impish little spitfire of a thing. Some might call her restless or easily distracted. I call her Little Pip because she’s always hopping around. A daddy’s girl from the day she was born, she loves nothing more than a warm cuddle or a kiss on the cheek. What does she dislike? Clothing tags. Hates them with a passion. Now if only I could get her to look me in the eye!

• Then there’s the youngest, a four-year-old boy with PDD-NOS. He too is perpetually on the move—except when he decides to “plank.” He is extremely passionate about Angry Birds—so much so that he will play the game with any projectile he can find. Including his dinner. Which, of course, cannot be eaten sitting down. He is very good at mind-blindedly annoying his siblings. Or his mom. Or his dad. But he often gets a pass, because he does it with such a broad grin that we tend to melt.

• Finally, there’s my wife. (No, I’m not going to tell you her age.) She’s not on the spectrum, so she’s not officially “ausome.” But it doesn’t matter, considering how awesome she is. Day in and day out, she lays down her life for her kids and never complains about the work. No regrets. No recrimination. No remorse. Just a lot of love and a dogged determination to help our kids become the best version of themselves possible. A psychologist friend once told me that raising one special-needs kid is about as demanding as raising three neurotypical kids. So there’s Katie, raising the equivalent of 18 children, and doing it with nothing but grace, wisdom, wit, and energy.

So that’s what’s ausome about ASD. It’s funny, but because we live and breathe this stuff every day, we can’t always tell when our kids are being aspie or being just plain kids. We simply don’t know what neurotypical looks like!

But that’s probably the biggest blessing of all. The labels don’t matter. What matters is the love. What matters is enjoying our kids for the wonderful constellation of gifts and challenges each of them has. What matters is knowing what every dad should know: that to touch your child is to touch heaven itself.

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!