Tag Archives: austim

A Fortunate Slip of the Lip

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Fourth Doctor Gobsmacked

Note: This post originally appeared as a guest post on the awesome “Confessions of an Asperger’s Mom page. Many thanks to Karen for inviting me to share my story with her readers. You should definitely check out her blog, as well as her Facebook page. She has a lot of wisdom to share.

I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:

“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”

“Dad? What does ‘autistic’ mean?”

My heart sank. It was probably the first time he ever heard himself described as autistic.

It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)

No Good Opportunity.

You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)

So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to.

He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works.

So there didn’t seem to be any need to explain autism to him. (Squawk!!)

Stumbling into The Talk.

Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question.

I brought him into our room along with Katie, and asked him, “What did you hear me say?”

“You said I was autistic and I have empathy.”

“That’s right. Do you know what empathy means?” (I was stalling for time.)

“No.”

“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”

“Okay. What about autistic?”

I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”

O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.

Autism Is. . .

So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.

“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”

“Yeah.”

“Any questions?”

“No. Can I go type on the computer now?”

“Sure thing. Knock yourself out.”

No Drama.

And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.

In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.

I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.

No Big Deal.

So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.

It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.

That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!

Who’s Leading Who?

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So today is Father’s Day. In honor of the day, I thought I’d dust off a post from a few years ago, update it a bit, and repost it. (That, and I’m too busy being a dad today to write something new.) So here goes:

Who’s Leading Who?

In one of the lesser-known resurrection accounts in the Bible, Jesus tells Peter: “When you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” The passage goes on to explain that Jesus said this to signify “by what kind of death he [Peter] would glorify God” (John 21:18-19).

This passage has always had special resonance for me, to the point of being a kind of interpretive key to almost all of the major events in my life. It sounds kind of grim, doesn’t it? All this talk about being led where you don’t want to go and dying—even if that death glorifies God. But that hasn’t really been my experience. Rather, I’ve found a surprise or two along the way as I’ve seen these words unfold in my life.

One major surprise came when I realized who it was who would end up leading me along unexpected paths: my own kids! Now I’m sure that many parents can relate. None of us really knows what to expect when we hold our first child. We can never fully appreciate how much our lives will change now that we have welcomed this new person into our lives. How much more when you are blessed with six children! And how much, much more when it turns out that all six children are on the autism spectrum!

Unexpected Paths.

I named an earlier post “A Little Child Shall Lead Them,” and I meant it as something more than a clever play on words. I can testify that my kids—all six of them—have led me in ways I never expected.

  • They have led me to the waiting rooms of psychologists and psychiatrists and speech and occupational therapists as I have sought to understand their challenges and help them make sense of them as well.
  • They have led me to school conference rooms, where I have advocated for them and labored mightily to convince unimaginative, one-size-fits-all educators to give them a fair shake.
  • They have led me to my knees in prayer—not desperate prayers for their healing, but impassioned entreaties that God will grant them a future full of hope, a future where their gifts are welcomed and where they can make a difference for other people.
  • They have led me down rocky paths as I have helped them work through sleepless nights; relationship challenges; full-scale tantrums; days-long depressive episodes; and anxious, hours-long perseverations.

Death and Freedom.

Now, Jesus told Peter this stuff as a way of hinting at the kind of death that awaited him. And that has proven true for me as well, in a more figurative way. No, I’m not writing from beyond the grave! But my kids have definitely led me to experience other kinds of “deaths”—

  • The death of my dream for a Brady Bunch kind of life. It was a pretty self-centered, self-indulgent dream anyway, and I’m glad it’s gone. Now I don’t have to worry about how clean or dirty the house is. Or about when my kids are going to record their first pop single.
  • The death of any rigidity or legalism I may have brought to my ideas of parenting. I have learned to become much more flexible and creative in my parenting. “So what if she wants to wear all black clothing to church?” “You want to stay in your bed to avoid the noise of the dinner table? Knock yourself out! Just make sure you eat afterward—and clean up your plate.”
  • The death of a few close friendships due to some people’s lack of willingness to “get” our family’s dynamic. This was especially hard at first, but I realized that it’s in times of difficulty that you learn what your friends are really made of. That’s when you have to decide who is really worth your time.
  • The death of a romanticized take on the spiritual life. There are no simple answers. There are no guaranteed formulas. And yes it’s true; sometimes God does give you more than you can handle. That’s why he gave us each other. It’s also why he created wine.

It’s ironic, but each of these deaths has made me feel a little more alive and free. Little by little, my kids have led me to a place of surrender. Not defeat. Not resignation. But acceptance. I have learned so much about myself; about human nature, both the bad and the good; and about God that I feel like I’m a very different person now compared to who I was when our first one was born. And that leads to the final part of this passage.

An Unforeseen Glory.

According to the story, Jesus was pointing to the way Peter’s death would glorify God. Well, I’m not about to think that I give God all that much glory. Not unless he is glorified in huge messes! But I do think that the deaths I listed above have helped me to see God’s glory in new, unexpected ways.

  • I see his light shining through my nine-year-old’s unassailable innocence, both when he’s in full melt down mode and when he’s completely aflutter with the joy of something as helping Katie cook dinner.
  • I see him shedding a tear when my fifteen-year-old gets himself tangled up inside and needs to be talked down from a ledge of self-condemnation.
  • I feel his arms around me every time I dive into yet another parent-teacher conference or begin yet another bitter disputation with the insurance company.
  • I see his covenant commitment every time I come home and watch Katie coaching the kids in homework, making dinner, and trying to help the six-year-old overcome his loud, insistent perseverations all at the same time.

So yeah, there’s a lot of good stuff that comes from these little, unlooked-for deaths. Leave it to religion to be so delightfully paradoxical!

This Is My Body.

 For those of you who don’t know, I’m a Catholic, so this last one comes from my faith tradition. More than anything else, I see God in the bread at Mass as he says, “This is my body.” But I don’t just see and believe. I’ve also found the audacity to pray in return: “Hey! Over here! This is your body, too—this precious family you have given me. We’re part of you, and we all belong to you. So don’t pass us over or forget about us. You made my kids this way, so you’re stuck with us.”

Then I go one step further and tell him, “And here is my body, my life. It’s nowhere near the image of you that it’s supposed to be. It’s still too much shadow and not enough light. Still, I offer it to you. Go ahead and keep leading me, even if it’s where I don’t want to go. With all of these little deaths, you have found so many ways to empty me. And I guess that’s fine. But now I need you to fill me and raise me up so that I can give myself—body and blood, soul and humanity—back to my children.”

And the Lord reaches out his hand to grasp mine, and responds: “Amen.”

Happy Father’s Day, everyone!