Random Thoughts during a Meltdown

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


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.

Pray for Us Sinners . . .

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.

 

A Down-Under Politician Looks Down on “Those People”

Pauline Hanson Australia

A troubling report from Down Under. Have a look at this article about Pauline Hanson, a senator from Queensland, Australia. In it, she argues, quite inelegantly, for students with autism to be separated from their peers and placed into self-contained classrooms. Why? Because these students are “holding back” the other students who want to learn.

Below are three quotes from her address on the matter, followed by three comments—all of which should be painfully obvious, but apparently are not. At least not yet.

  1. “Most of the time the teacher spends so much time on them they forget about the child who wants to go ahead in leaps and bounds in their education, but are held back by those.”

As if children with autism don’t want to get ahead or are incapable of making leaps and bounds of their own. They deserve more than to be “looked after.” Please don’t assume they are incapable of anything more than this. They’re not burdens needing routine maintenance or looking after.

  1. “It’s no good saying we have to allow these kids to feel good about themselves and we don’t want to upset them and make them feel hurt.”

What a cruel mischaracterization! This comment reveals an ignorance that is both embarrassing and unacceptable in a public official. I have no doubt that parents of autistic children want more for their kids than that they feel good about themselves. Like all parents, they want their children to receive an education, to develop their skills and gifts, and to know they can make a real contribution.

  1. “We need to get rid of those people because you want everyone to feel good about themselves.”

Well, at least her office later clarified that “those people” referred to “do-gooders” demanding autistic children remain in mainstream classrooms. But my sigh of relief was cut short when I realized that she was still talking about “getting rid of” some nuisances and who may be threatening the status quo. Again, the condescending language of exclusion, elitism, and overweening power. As if you can get rid of any parent.

 

No, It’s Not Okay

fullsizeoutput_449c

So I met my son at a local minor league baseball game today. It was a happy coincidence. Our company was taking a day at the park as a part team-building, part pressure-relieving event, and my boy’s sixth-grade class was taking a field trip. So after spending some time with my colleagues, I went looking for my boy.

It wasn’t hard to find him. He was the only kid wearing a long sleeve sweater. It was in the upper 70s and sunny, so all his classmates were in shorts and tee shirts. But there he was, seated at the end of his bench, squinting in the sun, his head darting left and right with that vague here-but-not-here expression I’ve come to expect when he’s in a crowded public place.

Okay, I Guess.

As soon as he saw me, he smiled and gave me a big hug. He buried his head in my chest and rubbed it back and forth while I scratched the top of his head. It’s our thing.

“How’s it going?”

“Okay, I guess,” he said.

“Are you enjoying the game?”

“Not really. I know balls and strikes and home runs, but I don’t like baseball so much. It takes too long.”

“Okay, so what are you doing instead of watching the game?”

“Oh, nothing, just sitting here watching my friend play on his 3DS.” [He wasn’t watching all that intently. Just glancing over his shoulder every now and then.]

He seemed perfectly content to sit there in the background, sweating in the sun. He wasn’t engaged or absorbed in anything. He was just “there,” innocently taking up a seat and waiting for his teacher to tell him it was time to go back to school. I learned that he had been there for more than an hour already, and he wouldn’t be leaving for about another hour. And he spent the whole time alone, in his own world. No kids were seeking him out. No one seemed to care that he was on his own. His guidance counselor, who knows about his diagnosis, was sitting a couple of rows behind us, and even she seemed oblivious.

Happy Compliance.

It broke my heart. It was the first time in a couple of years that I saw him in his school element. I knew he had been like that in elementary school, but I thought he was coming out of himself. Not so much.

The thing is, it didn’t take much for me to get him involved. We watched the next few pitches and cheered each hit by the home team. We analyzed each misstep. We clapped at two home runs and followed the foul balls that flew over the net and landed in the stands. It wasn’t hard.

I also noticed that he had a packet of worksheets with him. They were filled with STEM questions he could answer for extra credit. He had done none of them. “My grades are good enough,” he told me. “I don’t need to do it.”

“Come on!” I said. “We can knock these things out right now. Don’t you like seeing your grades go up?”

“Okay.” No resistance. No fight. Just happy compliance.
So for the next 20 minutes, we tackled the problems. “What is the area of the baseball diamond?” “If Team X has lost three times as many games as they have won, out of 72 games, how many games did they lose?” “If you could interview the pitcher, what would be two STEM-type of questions you would ask him?” Simple stuff.

He happily dove into each problem and did a great job. (He is an honors student, after all.) But he wouldn’t have done anything if I hadn’t have been there to get the ball rolling. He would have remained static in his thought bubble, because no one seemed to care.

A Shove and a Nudge.

I suppose I shouldn’t care either. After all, my son was content. He gave no indication that he was feeling lonely or misunderstood or even bored. So why make a deal out of it?

Maybe it was the fact that no one seemed to notice that he was alone. Maybe it was the glassy-eyed look he had when I first found him. Maybe it was because I hate being passive myself; I always have to have something “useful” to do. Maybe it was because I got a brief glimpse into what his future might be like, and it scared me.

Whatever it was, I know one thing: I think it’s time to start planning for the next school year. Bone up on disability education law. Get to know a couple of his teachers. Observe him in some classes. Sketch out what an IEP might look like for him—and get ready to fight for it.

Because I don’t want life to pass my son by. I don’t want him to miss out on the relationships and the learning and the enjoyment that could be his if someone were to just welcome him. Because he’s a good kid. A bright kid. A kind kid. He should have the opportunity to let his light shine. All he needs is a little nudge.

And that means I’m going to have to do a bit of shoving

Which I don’t mind at all.

Adventures in Airport Advocacy

Airplane! Logo

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.