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.

A Perplexing Plethora of Plushes


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.

Adventures in Airport Advocacy

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Every now and then I am reminded of how far we have to go before our world welcomes people with disabilities and neurological differences. Yesterday gave me two such reminders back to back. I was at the airport at the start of a business trip to visit my publisher in St. Augustine, Florida.

“Gawd!”

The first reminder happened as I was standing in line, waiting to board the plane. I spot an older man (~70-75) walking in circles at the gate area. He is cross-eyed and has the pleasant-but-pouty look of someone with cognitive challenges. When his care giver walks him to the gate for pre-boarding, he hands his pass to the agent and declares in a loud, excited voice, “I’m ready to fly!”

The agent smiles back. “Yes you are, sir,” and shares an ill-timed high-five with him.

A beautiful scene. Until the woman waiting in line ahead of me (~60-65) grimaces and turns to her friend. “Gawd, I hope he don’t end up sitting next to me,” she practically spits. “I’m here to relax, not deal with his kind of people.”

Her friend nods. A knife to my heart. A very brief thought that maybe I should say something. But I decide against it. What’s the point? She does not seem the type given to respectful dialogue. Instead, I offer up three prayers: one for the man, one for the woman, and one for myself.

For the man: “Thank you, Lord, for this fellow’s joy. Please keep him safe in your arms.”

For her: “Lord, please help her become more understanding and welcoming. I cannot fix stupid, but you can fix everything. Please help her out here.”

For me: “Please, God, help me be more forgiving. And maybe more brave.”

The Regular Dads Club.

The second reminder happened on the plane. I sat next to a Navy JAG officer and his wife. Both about my age. A delightful couple. Pleasant, engaging conversation with a good amount of back and forth between the JAG and myself. (The wife was a quiet sort.) We talked about our travels: his deployments to Iraq and Addis Ababa, and my six months in Tehran and post-Soviet trips to Central Europe. We talked about school: him at the Naval Academy, and me at The Mount. We talked about politics—after some careful circling to tease out each other’s views, of course. (He didn’t like Trump either, so we continued amicably.)

Then we talked about kids. His daughter, a linguist who was getting her Air Force commission this weekend. His son, who just graduated from Cornell, his second son, with an MBA from Stanford. And his third son, who is graduating from high school with a swimming scholarship to Colorado. He was obviously proud of his kids, but not in a snotty way. He didn’t even humble brag.

Then he asked me about my kids. “You have a lot of kids. Have you got colleges all figured out yet?” When I told him that we weren’t so sure about who would be going and who wouldn’t, he looked puzzled and asked why. I told him about their ASD diagnoses and some of the challenges they face.

It got awkward. He tried to say something like, “Well, not everyone’s cut out for college,” and “There’s plenty of trade jobs out there that need to be done.” I tried to change the subject, but he had essentially checked out. The conversation politely petered out, and a couple of minutes later, he opened his laptop, plugged in his ear buds, and settled in to a movie.

I don’t fault him. He just didn’t know what to say. His world had been circumscribed by success after success—of course, with hard work and sacrifice—and he didn’t have any reference point to orient him to special needs parenting. It’s a shame, too. We were having a good conversation. For a few moments, I was a Regular Dad. I was part of the club. I was just like everyone else.

Don’t get me wrong. I like the club I’m in. It would just be nice to bridge the gap between these two clubs every now and then. 

Even better, it would be even nice if there were no gaps. No separate clubs at all.

That’s why we need to keep advocating.

After the Intake

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.

How Hard Can It Be? Just Cut It.

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It’s a small thing; I’ve planted seeds that are bigger than this pill. It’s so small that sometimes it can slip through my fingers as I’m getting it out of the bottle. Imagine trying to find this little thing on the floor—before your eager, ever-hungry dog does. Or one of your five curious, playful cats.

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The doctor wants my boy to have only one-half of a tablet every morning. See that line in the middle of the pill? That’s there so that you can split it in half with your fingers. Only it’s so tiny that you can’t get the leverage you need to break it—see the picture above. So into the pill cutter it goes. But not like that. It has to be straight, parallel to the edge of the box so that the cutter on the top can make a clean, even slice. Let me just get my finger in there to straighten it out.

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No, no, not that way. It has to be horizontal, not vertical. Vertical is too thin. Here, let me try it this way . . . almost got it . . . no, not like that . . . hang on, I think that’s right . . . oops . . . so close . . . let me try again . . . uh . . . Dammit!

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Okay. There it is. I have no idea how it got there. But at least it’s ready now.

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Mission accomplished.

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Twenty-nine pills and a half-hour later. I know it’s only breakfast time, but I need a drink.

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