Tag Archives: Aspergers

In Memory of Me

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So we made it to Holy Thursday Mass yesterday again this year. It’s a pretty big deal in the Catholic Church, since it is the beginning of our Easter celebration. It’s also pretty important because on Holy Thursday we remember the Last Supper, when Jesus gave us his Body and Blood in the form of bread and wine and told us, “Do this in memory of me.”

. . . Into the Hands of Sinful Men.

I love the idea that by saying, “This is my body . . . This is my blood,” Jesus made sure he would be present to us all the time. I’ve always loved the way that the Last Supper foreshadows the cross: in both cases, Jesus gave himself into the hands of sinful men so that he could lift them up to be with him. I find it moving that Jesus continues to give himself to us—sinners though we are—every time we come together to celebrate Mass.

Now, before we get to all the autism stuff, do me (and yourself) a favor. Let this thought sink in for a moment: Jesus continues to let sinful, conflicted, duplicitous, envious, lustful, bitter, [insert sin here] people take him into their divided hearts.

Six Sacramental Signs.

All this was in my mind on Thursday as we entered the church. I was really looking forward to a deeply meaningful, spiritual experience at the church. But alas, it was not meant to be. A couple of our kids had had a rough day at school, and they brought their agitation with them to church. One had forgotten to take her ADHD medicine, so she couldn’t stop chatting with Katie, fidgeting all over the place, and trying to engage her brothers. Another was worried about a difficult test that morning, and his anxiety worsened as the Mass went on. A third just plain didn’t want to be there, and he made sure to let everyone know it.

So there I was, trying to keep the kids from boiling over, trying not to distract the people around us, feeling more than a little uncomfortable with the way we stuck out, and feeling cheated out of my time with God.

Then it hit me.

Jesus has given these children to me. He has placed them into my hands. He knows what kind of person I am. He knows my weaknesses and my faults. He knows my selfishness and my lack of generosity. He knows my impatience and perfectionism. And still he saw fit to give me six kids with special needs. Six kids who would need extra attention. Six kids who would need a creative, flexible approach to parenting. Six kids who would need extra love to help make up for the world’s lack of understanding and acceptance.

I saw this right there in the middle of Mass. These kids are also the body of Christ. They are all signs of God’s beguiling creativity. They’re signs of his maddening ability to call forth the better part of my human nature while at the same time exposing my darker parts. They’re sacramental signs who both symbolize God’s mystery and impart his grace to everyone whose hearts are open.

In the midst of their everydayness, their struggles, and the occasional banality of their lives, there is something sacred about my kids. Like the Eucharist, their simple, unassuming appearance belies their wondrous complexity and depth. And like Jesus himself, they are a sign of contradiction, especially in the way their place on the autism spectrum evokes extreme reactions, both positive and negative. Yes, they are the body of Christ, and God has placed them into my hands. Just as Jesus is placed into my hands at every Communion line.

The Divine Risk-Taker.

I don’t know that I would take such a risk if I were God. There are a lot of men who would do a lot better at this than me. But then again, God seems to be in the risk-taking business. Again, it’s like the gift of his Body and Blood in the Eucharist. Jesus knows the risks involved in giving himself to us. He knows that not everybody will accept him with the right state of heart. He knows that nobody will ever grasp just how awesome this gift is. But none of this stops him from offering himself to us. Over and over again. In love and humility. For our sakes.

In a similar way, Jesus has seen fit to entrust these six children, these six images of himself, into my hands. He knows the risks. He knows that I won’t always be worthy of the gift. He knows that I’ll never fully understand how much he has given me. Still, he has given them to me and said, “Here, I trust you.”

At the Last Supper, Jesus told his disciples, “If I have washed your feet, you ought to wash each other’s feet.” He also told them, “Do this in memory of me.” He says the same thing to me. Every day. Through every one of my children. In every challenge and melt down and IEP meeting and therapy appointment and sensory overload.

Wash their feet.

Do it in memory of me.

And all I can do is stand in wonder that he trusts me so much.

Happy Easter, everyone.

Outcast by Association

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Jesus and the Leper

This kind of thing happens a lot, but I don’t often share it in this forum: a passage from Scripture or an insight from prayer will speak directly to my life as an autism dad. This time, it’s an insight that came from the Scripture readings at Mass today (Sunday, February 11). So, having explained the spiritual nature of this post—at least the beginning of the post—let me move ahead.

First, the Story.

Today’s Gospel reading was the story of Jesus healing a leper. It’s in Mark 1:40-45. The man, somewhat timidly, says to Jesus, “If you will it, you can make me clean.” Jesus, in reply, touches the man and says, “I do will it; be made clean.” And the man was healed.

But then Jesus tells the man to keep this miracle quiet—only to show himself to (not necessarily tell) the priests, who had the power to release him from his exile and allow him to return to his home, his family, and the synagogue. So what does the man do? He goes around telling everyone what Jesus did.

Mark tells us that because of the man’s loose lips, “it was impossible for Jesus to enter a town openly. He remained outside in deserted places.” By touching the infected flesh of a leper, Jesus became ritually unclean, just as the leper had been. And because this fellow spread the news, everyone knew what Jesus had done. He was now barred from entering any town or village. He couldn’t even go visit his mother back in Nazareth.

A Simple Choice.

Okay, so that’s the story. Here’s what hit me: Willingly (I do will it), Jesus took upon himself the isolation that had been this unfortunate man’s lot. The ritual uncleanness had passed from the leprous man to Jesus, so Jesus could no longer be around other people any more. And without a peep, he accepted the consequences of this action. Knowingly, by his own actions, he placed himself under the judgment of the law.

What I found interesting is the simple, unassuming way that Jesus did this. There were no recriminations against the upholders of religious purity. No sense of superiority over those who enforced the law with no regard for the people they were condemning. No protest against the unfairness or extreme nature of the judgment. He quietly accepted the verdict. He willingly became an outcast so that this fellow could be reunited with his family and friends.

Outcast by Association.

There’s a parallel here for my life as an autism dad. Over the years, I have had countless meetings with teachers, administrators, school psychologists and school counselors. Along with Katie, I have pushed and pulled, schmoozed and confronted, plotted and pleaded to get my kids the help they need. I have even gotten one teacher fired and another demoted because of the way they worked (or failed to work) with my kids.

As you might expect, I have become persona non grata in a few schools. I have been identified as that dad on more than one occasion. One assistant principal became very adept at not returning my calls or e-mails. A teacher once told me, “You know, not everyone is cut out for school” as an attempt to keep me from pushing for help for my son. Another administrator grew so weary of my advocating that all sense of comity shriveled up, and every communication became unnaturally stiff and formal. It’s as if I had become an outcast myself.

I’ve done all of this so that my children could be more welcomed into the community of their classmates and into the community of learners that is their right. Of course, I’m willing to do it. I’d do anything to make sure my kids get every chance to succeed.

But before you get the idea that I’m a hero—or that I think I’m a hero—let me give some perspective.

Parting Ways with Jesus.

As I said above, Jesus became an outcast willingly. There was no bitterness in his heart against those who judged him. He felt no recrimination against the people who barred him from entering their towns. He held no judgment against his judges. There was only concern for the ones who had been excluded and demonized. He even forgave the people who crucified him.

I, on the other hand, can give in to the very same us-versus-them mentality that I have railed against when it is aimed at my children. I can issue harsh judgments about their teachers’ ignorance, blame the school administrators for their callousness, and even issue a blanket condemnation of all the neurotypicals around us—everyone, that is, except my close friends who, of course, get it.

So this is where Jesus and I part ways. Jesus feels just as badly for the people who do the judging as he does for their victims. In his eyes, everyone is a victim. They may be victims of the structures of sin in the world that convince people that they get ahead by pushing other people down. Or they may be victims of the structures of sin in their own hearts that make them demonize the “others” around them—the attitudes of rivalry and animosity that lurk inside everyone’s heart. Or, most likely, they are victims of a mixture of both.

It Starts with Me.

Of course, I will never be as pure or humble as Jesus. But that doesn’t mean I shouldn’t try. I don’t want my kids to grow up with a victim complex. I don’t want them to grow up bitter at the world. I don’t want them to develop some perverse sense of superiority to the “haters” and “judgers” out there.

It starts with me. Children learn what they live, so I need to create an environment of openness and generosity in our home. I need to model forgiveness and understanding. And because my kids can have a hard time grasping social cues and relationships, I need to be as clear and patient as possible.

This, I think, is one of the most important lessons I can instill in them. Because no matter where they go or what they do, they’ll always stand out. Maybe not all the time, and maybe not a lot, but they will. It’s inevitable; they’re too different not to. And no matter how much progress we make as a society, there will always be people who don’t understand. People who treat different people as lesser people. People who write them off. Even people who turn them into scapegoats.

If I can teach my kids to forgive and not judge, they will develop into men and women whom people will want to be around. They’ll find their communities, their homes, their tribes—places where they can thrive and make a difference.

It starts with me. But then again, it really doesn’t. It started with Jesus. He set the tone. He showed the way. And by his grace, I can too.

Random Thoughts during a Meltdown

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Mushroom Cloud

• It’s only a video game. Why can’t he see that? He has a lot of others; he doesn’t need to play this one.

• Why would his older brother forbid him to play this game? “It’s mine. I bought it with my own money, and I don’t want anyone else using it.” This is such a hard policy to enforce when you are one of six children. But he seems oblivious to how much anguish he’s putting his brother through. That part of the equation doesn’t enter into his calculations.

• Ah, the two-edged sword of autism! Perseveration and emotional dysregulation on the one hand (the younger brother), and a cold, hard adherence to fact and logic on the other (the older brother).

• The poor kid! He can’t stop crying. I know I shouldn’t talk yet. Just keep rubbing his head and let him get it all out. Still, there are so many things I want to tell him. Even once he does calm down, there are still a few things I’ll have to keep to myself. Like my fear that he may never find a way to take control of his own emotions. Like my reluctance to think about the kind of future he may have if he doesn’t work through this stuff.

• Okay, so we’ve been up here in my room for, what? Nearly thirty minutes. Dinner is getting cold, and I’m hungry. But this boy needs help. He was yelling at everyone, throwing things, and shouting me down every time I tried to calm him down. Now he’s just crying quietly, bemoaning his fate and asking why his brother has to be so mean to him. Give him a few more minutes, and he might shift a little more.

• You know, meltdowns are curious things. You can’t just say, “Oh, he’s just having a meltdown; he’ll be back to normal in a few minutes.” I used to say that, but I don’t think it’s fair—to him or to me.

—It’s not fair to me because it keeps me trapped in the mode of thinking that this isn’t his “normal,” that these are just aberrations to be endured when they crop up. Kind of like when you get the flu once every few years. So every time this happens, it takes me by surprise. “Where did this come from?” As if I didn’t know. And that makes it all the more draining emotionally.

— It’s not fair to him because I’m not helping him learn how to deal with these things. He’s getting older now—he’s into his adolescence—and he’s going to have to start figuring himself out. I can’t be there to hold him every time something goes wrong. He needs to learn how to stand on his own two feet. But it doesn’t occur to me until we’re in the middle of a meltdown. Then, it’s too late to make any progress.

— It’s also not fair to hold him to expectations that he cannot fulfill. That will only make him feel guilty and inadequate.

—At the same time, his oldest brother has been through a lot of these behaviors and has come out the other end. Granted, he is not as severely affected by ASD, but still he is leveling off. I wish I knew what the future holds for this child of mine!

• This is who he is. At least for right now. Meltdowns are part of his make-up, not just random things that descend upon him. He is autistic, and that means he will get overwhelmed. He will take things too literally. He will get overwrought over issues we consider minor. He may never get over it. Maybe he will, but it’s not a sure thing. Anyway, it doesn’t matter. How can I help him right here, right now? And tomorrow and the next day, how can I teach him?

• Okay, now he’s moving into quiet, occasional sobs. He may be ready to talk. Maybe I can walk him through what happened so that he can get just a little bit smarter, just a little more self-aware. “What do you think, son? Can we talk about this?”

• Dammit! That made him begin crying again. I wish I knew how to read him better. I hate being the one to push him over the edge. Not because dinner is still waiting—stone cold by now—but because this is only going to make him feel worse about himself.

• Back to his older brother. What should I do about him? I know if I talk to him about sharing and being generous, he’ll use his [flawed] logic and his [unnecessarily] strict sense of right and wrong to push back. And when he pushes back, he really pushes back. If I don’t address this, he’ll lose another opportunity to learn how to understand other people and their emotions.And I’m getting tired. And really hungry. How far do I push him? How can I reach him and help him think with his heart as well as with his brain?

• Oh wait, the boy is coming around. He was hunched over himself on the bed; now he has unwrapped himself and is lying down with his head on my chest. Progress! I don’t have to keep rubbing his head now. I can just grasp his hand and give it a reassuring squeeze.

• “It’s going to be okay, son. Don’t worry; I’m not mad at you. Are you ready to go down and have dinner? Yeah? Okay, let’s get something to eat.”

• Well, the fries are cold now, but at least the BLT is still okay—it’s a sandwich, after all. There he is, quietly eating. His brothers and sisters have already left the table. Now it’s just him and Katie and me. She calls him over and gives him a big hug. He smiles, somewhat sheepishly. She speaks words of consolation and encouragement to him. God, I love her! She is so good at mopping things up.

• Now he comes over to me, wraps his arms around me, and doesn’t let go. God, I love this kid! Whatever happens—meltdowns or no meltdowns, the future be damned. Right here, right now, I love my son. Just like I loved him when he was crying. Just like I loved him when he was throwing his fidget spinner across the room. Just like I’ll always love him. No matter what.

A Perplexing Plethora of Plushes

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With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.