Tag Archives: faith

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.

Pray for Us Sinners . . .

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My little girl (10) was having a rough time at Mass this morning. Anxiety about other family members’ struggles became too much, and she couldn’t get seem to stop the negative thoughts. Misperceptions and anxieties then led to her acting out in an angry/sad combination that had begun to wear me down as well. She feels everything so deeply that it’s like she takes on everyone else’s burdens.

But then halfway through the Mass, she asked if she could go to the back of the church, where a little alcove dedicated to the Virgin Mary is (pictured above). “I can’t stand being here,” she snapped.

“Only if you promise to come back,” I said. I didn’t want her just wandering around back there. She grunted in assent, and stomped off. She loves drama.

While she was gone, I took the opportunity to try to reset myself in prayer. Heart rate came down. Breathing became more regular. Lumpy throat diminished. A good start.

Five minutes later, as the homily was wrapping up, she came back. Stepping lightly. Smiling. She gave me a big hug and said she was sorry. The rest of the Mass passed uneventfully. Peacefully, even. I felt another lump in my throat, but this one was okay.

After Mass, I asked her what she did in the back of the church. “I just sat there for a few minutes and looked at the statue of Mary.” Innocent. Matter-of-fact. No drama.

“Do you know what happened?” I asked.

“What?”

“You went to Mary, and she prayed for you. She prayed with you. And Jesus answered her prayers and yours. How else can you explain the dramatic change?”

“I guess you’re right,” she shrugged. Then she went off to grab a donut—as if nothing had happened.

Everything Happened.

Now, it would be easy to attribute my girl’s change to her taking a break. It would make sense if you wanted to say that getting away from her siblings and changing her environment was all she needed to do her own reset. But the change in her demeanor was so dramatic that this can’t be the only answer. Not to mention how little time it took for her to turn around.

Besides, as a Catholic I believe in the Communion of Saints and the special role that Mary plays as our spiritual Mother. In fact, many are the Rosaries I have prayed asking for her maternal intervention in my kids’ lives. And on more than one occasion I have experienced blessings from her myself.

That’s the thing about faith. It doesn’t need to “disprove” the other explanations that may be out there. It’s not as if it’s a zero sum game, where you have to ascribe everything to either psychology or spirituality. Faith is capacious, generous, encompassing. It’s also humble. It doesn’t feel threatened when other possible answers are put forward. The Bible may describe God as a “jealous” deity, but this is not the kind of jealousy it’s talking about.

Every special-needs parent has to find the best way to help his or her children and to deal with the unique challenges that he or she faces. As for me, I can’t imagine walking this road if I didn’t have recourse to prayer. I can’t imagine being left with only medical, psychiatric, and pharmacological answers. If my kids have taught me anything, it’s that there’s more to them than the sum of their various material parts. There’s a longing to belong. There’s a drive toward unity and community. There’s a capacity to love and to receive love that goes beyond simple reciprocity. There’s a “fittedness” for heaven that I can see in their eyes.

So it makes perfect sense that when my girl went to spend time with Mary, Mary spent time with her. And prayed for her. And blessed her.

My girl may not think that much happened during those five minutes. But I know that everything happened.

Both to her and to me.

 

After the Intake

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Notebook Writing

So we took our Little Guy to a pediatric hospital in Baltimore to begin the process of evaluating him for ASD. Up to this point, all we had for him was a provisional diagnosis from our psychologist in Florida—about three years ago. She had just begun her own evaluation when we ended up moving to Maryland, and we’re just now getting around to getting something more formal.

Anyway, today’s appointment was “intake”—a bunch of questions about his early development, his family history, his current state, and our concerns. As she asked us the standard barrage of questions, the psychologist also observed our boy in action. But the main focus was on us. For an hour.

It sucked. Not because we couldn’t answer her questions. We could. Not because the Little Guy was out of control. He wasn’t. It sucked because, well, you know why. A whole hour describing our family’s challenges. A whole hour listing our son’s deficits and telling stories about his meltdowns and his sensory issues and his social struggles and his attention deficits.

Poignant Reminders.

Katie did awesome. She always does. Her memory is sharp as a tack. She could recall his early developmental challenges far better than I could. She was clearer on his current challenges than I was. She spends more time with the kids than I do. She works part time, and I’m on a ten-hour-a-day schedule. Plus, she takes more therapy appointments than I do. So what was standard fare for her came flooding over me with a quickness and a matter-of-fact tone that felt like a gut punch.

You see, when your whole household is ASD, you tend not to notice all the details. It’s just part of your normal. We don’t have any neurotypical kids, so we don’t know what standard behavior looks like. After a few years, you begin to glide over the ticks and twitches of ASD. You take them in stride and keep trying to move forward. You get so accustomed to them that you don’t even recognize how many of them there are. That is, until you have to recount them to a perfect stranger with a degree.

So to hear the Little Guy’s symptoms rattled off with precision one after the other . . . well, let’s just say it was hard. Lumpy-throat hard. It broke my heart. Today was a reminder of how tough life will be for my kids—of how tough it already is.

It was a reminder of every tense, contentious, and tearful IEP meeting we ever had. It was a reminder of the friendships my kids have lost due to their social challenges, as well as the friendships Katie and I have lost because of people’s misunderstanding. It was a reminder of all that we are missing out on, like family dinners out or vacations or even peaceful walks in the woods. It was a reminder of the earlier days, when we were both new to this gig and so much more scared than we are today. And it was a reminder of the large amount of work that lies ahead of us as we plan and prepare for our children’s futures. So yeah, it was hard.

I so want to see my kids have the best future possible. I so want to see them thrive and kick ass in the world. I want to see them happy and productive, welcomed and loved. Some have a greater chance at this than others, but none of them will find it easy. All of them will ask the “Why me” question more frequently and with more poignancy than their typically developing peers. That’s why it was so hard.

Mission Accomplished.

Today was also hard because this evening our Little Guy put up a huge, weepy, melt-downy fuss about something he normally enjoys: soccer practice. He was probably worn out from the trip to Baltimore. It wasn’t that demanding in any ordinary way, but it was a break in his routine, and that never ends well. It hurt to see him so upset, but I knew I had to help him power through it. If he could just get on the field and start running around, he would end up having a good time. But the drive there seemed unending. No amount of consoling words or attempts at humor could calm him down. All I could do was keep driving.

We got to the field, and his mood lifted as soon as he saw his team mates. He ran onto the pitch and started kicking the ball around with them. Mission accomplished—for him at least.

It took me a little longer. Once I saw that he was okay, I took a long walk and prayed, my Rosary in hand. “Holy Mary, Mother of God, pray for us. . . .” It helped. A ton.

Now I’m sitting here on the sideline, watching my son. He’s hesitant about mixing it up with the other kids. His kick and his run can be awkward at times. His teammates engage in typical boy humor that he doesn’t quite get. And he takes every misstep of another player far too seriously. Standard Little Guy stuff.

But it’s okay. I’m sitting in the shade of a tree. A cool breeze is blowing. I catch the scent of honeysuckle on the wind. And I know God’s going to take care of us.

Everything’s going to be all right.