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.

Dude!

Take a look at this story about an aspie fellow trying to survive a conversation with an alien species—in this case a neurotypical alpha male. It’s really quite entertaining, but it also gives a glimpse into all the work that folks on the spectrum often have to put into supposedly normal, everyday interactions. If only the exchange had been videotaped!

O Necessary Sin!

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A few days ago, I came across this post on another autism parent’s blog, and it got me thinking, again, about the question of God and his role in stuff like this. The author is an associate pastor in a nondenominational church in Oregon. He has five kids, one of whom is on the severe end of the autism spectrum. In the post, he talks about how the Christian faith is a “lousy force field.” He says that being a Christian and belonging to a church really doesn’t insulate you from all the bad stuff that happens out in the real world. “It’s a lie,” he says. “We are living neck deep in the stink of life just like everyone else.”

Exactly. That’s our experience as well. Believing in God, going to church, having a regular prayer time, etc. None of it guarantees you a problem-free life. It may help you face the challenges when they come. It may help make you more peaceful, more patient, and more trusting. But it won’t shield you from the bad stuff. It should help protect you from sin and all the bad stuff that is the direct result of your own personal sins. But it won’t shield you from the bad-things-happen-to-good-people stuff.

I’ve got to hand it to this fellow for being honest about how broken he feels by his son’s situation. He doesn’t try to put a brave face on everything because he doesn’t want to give Christianity a bad name. He’s clearly been through the wringer, and he’s not going to deny it.

I also want to commend him for his determination. He hasn’t given up on God. He’s still out there helping people. He’s still pouring himself out for his church and leading a congregation in prayer—all with the goal of bringing them in touch with God. Really inspiring!

When Bad Stuff Hits.

But what this post got me to thinking about, again, was something I hinted at in a more recent post of mine: My kids on the spectrum have a prophetic role to play in this world. And for that reason, I am beginning to think that their ASD is part of God’s plan—for them and for the people whose lives will intersect theirs.

Here’s the thing: We want our children to be perfect. We want them to have good health, a good education, a bright future, no real problems or major roadblocks on the way to happiness.

But then autism happens. Or cerebral palsy. Or mental retardation. Or childhood diabetes. Or a host of other genetic, uncontrollable diseases and disorders. Suddenly the dream of a near-perfect life is gone. Our hopes are shattered. We worry constantly about our children’s futures. Their present is a long list of treatments, medical bills, and huge adjustments to everyday life. What happened? We had such beautiful plans, and now they seem smashed to pieces.

Quite often, too, we begin to wonder where God is in all of this. How could he let this happen to our innocent little child? What kind of Father is he anyway? I know a thing or two about fatherhood, and in no way does this fit into my definition. Many people, hurt and disenchanted, turn away from God. Others try to comfort themselves with analgesic statements drawn from inspirational posters and Chicken Soup for the Soul books. Anything to help reconcile our plans and dreams with the far more difficult reality thrust upon us and our children.

Frying Other Fish.

But what if this was part of God’s plan all along? What if this was part of the way he dreamed our children into existence from the start? After all, the Bible tells us that every hair on our heads is counted (Matthew 10:30). It tells us that God knit us together in our mother’s womb, and that every day of our lives is already written in his book (Psalm 139:13, 16). Drawing on a particularly memorable description of the act of conception, it tells us that God poured us out like milk and curdled us like cheese (Job 10:10). If he was so intimately involved in our children’s creation, how could something like this slip in unintended?

Actually, it’s not too hard to imagine that God had a hand in this. His ways aren’t our ways, are they? We may want a comfortable home in the suburbs, good schools, and a promising career for our kids, but I suspect that God has other fish to fry. Not that he has anything against the middle-class American dream, but I think his sights are set a good deal higher. He seems to be much more interested in a world marked by love, compassion, justice, and mercy. He seems to care more whether the people he created look and act like his Son—a poor carpenter who didn’t have a place to lay his head.

So how is he going to get this to happen? Certainly not by giving everyone the same homogenized, perfect, problem-free lot in life. If there were no poor, there would be no generosity. If there were no sickness, there would be no compassion. If there were no hardship, there would be no growth in character. There would only be one big, bland, barrel of blah. Yes, God wants to give us good gifts. But the gifts and the goodness he has in mind far outweigh the trinkets and gewgaws we often ask for.

No, there has to be sickness. There have to be disorders. There have to be natural injustices like autism, down syndrome, and MS. It’s all part of the “happy fault” and the “necessary sin of Adam” that we Catholics exult in at the Easter Vigil.

So no, life isn’t fair. It isn’t supposed to be fair—at least not according to our standards. It’s about how we take what God gives us and use it to build his kingdom.

A Royal Calling.

That’s why I think kids with special needs have a valuable, prophetic role to play in this world. In a way, they are God’s word to us. They call us to a deeper, more meaningful life. With their innocence and vulnerability, they invite us to become more than the collection of our possessions, our education, and our ambitions. They call us to become Christ for them, even as we see Christ in their eyes.

The pastor I mentioned above ended his post with these words:

I don’t know whether Jackson will be fully restored in this life or the next, but he will be restored. It will happen. That means my son and others like him—the ones who for centuries have been forgotten, bullied, mocked, and thrown away—they will be heralded like Kings and Queens, and celebrated like rock stars.

While I pray every day for my kids’ healing (and I’m not always sure what that means), I get the sense that their full restoration won’t happen this side of eternity. They have too important a part to play. But I do believe that in this life they will be “heralded” like the royalty they are—if by only a few people. In my heart I try to do that every day, and I firmly believe that they’ll find other people who will treat them with just as much honor and reverence. People who will love and accept them for everything about who they are—not in spite of it.

I know that’s how God looks at them.

Pint-Sized Prophets?

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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.

Why We Cry. . .

kiss_cheeseburgerRecently, a friend at work sent me this story about a girl with autism who was treated very well by the staff of a Chili’s restaurant in Midvale, Utah. Apparently, the Facebook post that this story was based on has gone viral, with nearly 50,000 comments. And I can see why. If you have one or more kids on the autism spectrum, you don’t expect people to go out of their way to help you or your kid. Instead, you get used to the baffled stares, the cluck-clucking, and the occasionally mean comments about your children and your parenting skills—or lack thereof.

For Katie and myself, whenever we contemplate going out to dinner, we have to include a few questions that most families wouldn’t bother to ask. Questions like: “Is the place too dark? Too bright? Is it noisy or quiet? Is there plenty of space between the tables? Do we know if the staff is flexible? Is there more than one way out in case of a melt down or in case one or more of the kids needs to take a break and get some fresh air?” So as you can imagine, we don’t go out that much, and when we do, it’s usually to our local McDonald’s, where many of the people already know us.

Anyway, as I said, I read this piece about a week ago, and it kept popping up on my Facebook account. Friends messaged me about it, or posted it to my wall, or shared it on their own walls. Clearly, it moved a lot of people. And one of the best reactions to this story I have read comes from a man in Canada who has a son with autism. His name is Stuart Duncan, and he writes a blog called “Autism from a Father’s Point of View.” Check it out, and see what you think.