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.

The Pyx in My Pocket

 

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Remember my post a few weeks ago about my daughter’s difficulty with getting out of the house because of her fear and anxiety? Well, something cool happened today.

Sunday mornings can be rough for my girl. She hates going to Mass now, because she’s petrified that she’ll have a seizure—and in such a formal, public place. So I’ve been letting her stay home, along with one of her brothers to keep an eye on her (no argument from the boys, of course). To make up for it, I’ve been bringing Communion to her and her brother every Sunday after Mass. I carry the consecrated Hosts back in a little pyx like the one in the picture, and we sit go sit on the back deck together. We read one of the Scripture passages from Mass, talk about it for a few minutes, pray the Lord’s prayer, and then I give them Communion. Short, sweet, to the point.

“I Don’t Want It.”

Today was different, though. She woke up deeply rattled by two separate nightmares. She had promised me that she would come to Mass today, but the nightmares did her in. There was no way she would leave the house, and there was no way I was going to push her.

So off I went to Mass with everyone else, carrying my trusty pyx in my pocket. In the Communion line, I presented my pyx to Fr. Keith and asked for Hosts for my two errant kids. I’m all too familiar with the drill, and so is he. So far, so good.

But when we got home, I discovered that my girl was too upset even to receive Communion. She was in our bedroom, curled up on the bed, her brow furrowed in fear. Her voice quavered as she begged me not to force her not to come downstairs for our weekly Communion service. “I’m just not stable now,” she said. “I don’t know what’s wrong with me; my nightmares are getting worse, and I don’t want to leave your room.”

“There’s nothing wrong with praying and asking God for his help,” I said. “Who knows? Maybe you’ll feel better afterward.”

“I don’t know why, but I just can’t!”

She was nearly in tears, so I put my arm around her, and offered up a silent prayer. This was worse than I had seen in a long time, and I was at a complete loss. All I could do was hug my girl, with a “loaded” pyx in my pocket.

Ninety Short Seconds.

Then it dawned on me. Maybe the Sunday morning ritual we had established was just too intense for her today. The mere act of going downstairs, getting the Bible, and sitting on the deck was just too much for her to handle. It seemed so easy to me, but not to her. If she just stayed inert in our bedroom, she thought, nothing would change. She wouldn’t have to face her fears. She would stay safe in the little sanctuary she had built for herself.

So rather than coax her out into my world, I tried to enter hers. “I have an idea,” I said. “How about we sit right here on the bed, and I just give you Communion? We don’t have to read the Gospel. We don’t have to do anything special. Just a quick Our Father, and then you receive. Can you do that?”

“I think so,” she said.

It took all of 90 seconds, and we were done. And you know what? It made a huge difference. The anxiety faded. Her smile (a slight one, at least) returned. Her hunched shoulders relaxed, and she breathed a little easier.

The change was so dramatic that I was actually able to convince her to come on a couple of errands with me. Of course, I bribed her with the promise of lunch from McDonald’s, but her willingness to join me was still a marked contrast to how she had been just minutes before.

A Mini-Miracle.

Now, I can interpret this episode in a number of ways. Maybe my persistence paid off. Maybe the memory of her nightmares had faded. Maybe I had chosen just the right words, and delivered them in just the right tone of voice. Maybe the good feeling she got from doing what Dad wanted softened her up.

Or maybe, just maybe, God actually worked in my little girl’s heart and calmed her fears.

This answer makes the most sense from a faith standpoint, but it also makes the most logical sense. The desperate scenario I described above was not going to change. My girl was far too anxious. The only variable that changed in the equation was the impromptu Communion service. She eased up only after she received the Eucharist—which we Catholics believe is the actual presence of Christ.

I know this sounds odd. I know it sounds like I’m trying to justify my faith. But I don’t care. As long as mini-miracles like this keep happening, I’m going to keep believing. As long as I find help and answers in prayer, I’m going to keep giving God the credit. As long as my kids can point to evidence of Jesus’ presence and his work in their lives, I’m going to go with it.

That’s why I’m keeping my pyx in my pocket.

His First Sleepover

So here it is, 10:30 at night, and I’m sitting on the floor of my 10-year-old son’s bedroom. I do this every night when he goes to bed. It’s become our little routine. He comes into my room, tells me that he’s worried about something. He says that he needs me to sit with him “just one more night,” and I happily oblige. I sit on the bed with him, and we talk for a few minutes about his day. I pray over him, kiss him on the cheek, and tell him I love him. Then I sit down on the floor next to his bed (usually with my iPad) and wait for him to go to sleep.
 
But tonight is different. This time, his good friend Joseph is spending the night with him. They have spent the past three hours editing a video they’ve been making, laughing and whooping it up the whole time. They were having such a good time that I assumed all would be well. But when bed time came, my boy came into my room again, as usual, and started talking to me.
 
“Dad, I don’t feel very comfortable,” he said, wringing his hands and giving me a sidelong look.
 
“What’s wrong, Squirt?”
 
“This is my first sleepover, and I’m not used to having someone other than my family in our house. Joseph is my best friend and all, but it feels so weird. I don’t know what to do.” His voice was quivering.
 
I held him for a while, and we talked. I told him that it’s no different than if Joseph were to go home after spending time visiting. My boy would just go to bed as usual, only Joseph would be in a sleeping bag on the floor next to him. Nothing strange or wrong or bad would happen. They’d just go to sleep, and in the morning he’d wake up to find his best friend there, ready for some more fun.
 
But no amount of logic would help him. He needed me to be with him. He needed me to assure him that everything would be all right. He needed the comfort of the routine—especially in this situation, when someone who isn’t normally here is, well, here.
 
So here I am, sitting in my boy’s bedroom while he and his friend try to go to sleep. Joseph seems to be nodding off just fine, but every time I look up at my boy, I see that he is squinting his eyes, staring at the ceiling, or looking at me forlornly. Normally, he’s asleep in five minutes. But not tonight. He just can’t settle down. He keeps tossing and turning. Things aren’t the way they’re supposed to be, and that’s upsetting.
 
This may be a long night.

The Last Bottle

“Do you mind checking the dosage on this one? I think I put too many in the boy’s cup this morning, so I told him to take only one. I think we need to put the extra one back in the bottle”

So said my wife when I came down for breakfast, as she handed me a medicine cup.

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This is how we dole out the kids’ medication. Each kid gets his or her own cup with the proper medicines at the proper dosages. Normally, this is my job every morning and evening—a job that involves taking every pill bottle out of our “apothecary box,” reading each bottle to verify who gets what and how many of each, and placing the appropriate medicines in each kid’s cup. It also involves getting out the Gatorade for the one kid who can’t handle the taste of his medicine with water, and getting out the milk for the other kid who can’t handle Gatorade or water. In the morning it also involves bringing two of the boys their medicine in bed so that it can begin working in them before they join the rest of us. Depending on how awake I am, this can take between five and ten minutes.

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Well, this morning I was late coming downstairs, so Katie took over the job. Only our doctor had just changed the dosage on one of the prescriptions, and she couldn’t remember what it had changed to. Hence the extra pill.

So I sat down at the table and began my usual ritual of sorting through the apothecary box to find the right bottle so I could put the extra pill away. A few minutes later, this is what the kitchen table looked like. (For those of you not patient enough—or not anal enough—to count, that’s eighteen bottles there.)

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Why eighteen? Because, in keeping with the laws of the universe, it was the last bottle in the box. It’s always the last bottle in the box. Just once, I’d like it to be the first bottle. Or the fifth. Or the eleventh. Hell, I’d be happy if it was the seventeenth. But no, it’s always the eighteenth. <sigh>

 

Conventional Wisdom

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Random participants at the 2016 Katsucon Convention.

So my 15-year-old girl had a lot of fun this Saturday. Her dream came true when we pulled up to the Gaylord Hotel outside of Washington, DC, for her first anime convention. She had been preparing for this for months, figuring out who she should dress as and then fretting over every little detail of her cosplay costume.

Of course, she didn’t go alone. Dutiful dad that I am, I joined her. I had checked out the group’s website, and found the dress code, which included such rules as “At least one inch of fabric over the nipples” and “All play weaponry must be concealed when you are outside the convention center.” I also saw that there were a number of panel discussions, ranging from “How to Sew Your Own Plush” to the late-night, age-restricted “Introduction to Japanese Bondage Techniques”—complete with demonstrations. Well, okay, then!

Anyway, from the moment we entered the convention hall, we were surrounded by people of all ages, shapes, sizes, colors, and gender configurations. Almost all of them were dressed as their favorite character from anime or sci-fi or fantasy or just about anything else. There were Pokémon, elves, storm troopers, satyrs, Halo soldiers, flying monkeys, creepers, and Splatoon squids. And many, many others. More than 15,000 of them. I was one of the few who hadn’t dressed up—just jeans, sneakers, and a sweatshirt. I guess I could have said I was going as Awkward Suburban Dad, but I would have needed some identifying totem, like a DirecTV remote or a Black & Decker power tool to make the costume believable.

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My girl, the Splatoon Inkling.

I didn’t know what my girl would want to do there for six whole hours. None of the panel discussions interested her, and the exhibit hall wasn’t all that big. But it turns out I didn’t have to worry. She knew exactly what she wanted to do. Apart from a half-hour in the exhibit hall, we spent most of the time wandering around the convention center and the hotel’s public spaces. She was so very excited to see everyone’s costumes, and she took pictures. Lots and lots of pictures. Her wandering wasn’t calculated, but it didn’t matter. We went here, then there, then back here, then over there, then back again. All the while, she kept cooing about how happy she was to be there.

Work the Crowd.

Then she got an idea, which she picked up from observing some veteran cosplayers. She found a spot in an open area in the busy hotel lobby and just stood there waiting for people to come and take her picture. It was quite a sight: she in her very simple, decidedly amateur, costume, flanked by a portly Japanese princess on one side and a svelte, leather-clad female vampire on the other.

I stood about 25 feet away so that I could keep a watchful eye on her but give her some freedom. Over the next hour, hundreds of people walked past, most of whom didn’t pay her any attention. A few people stopped to take her picture, and a couple of folks talked with her for a bit—including one young man from France whose friendliness prompted me to hover more closely. But overall, I was happy. “This is so good!” I thought. “My little girl is getting out there; she’s spreading her wings, taking risks, and enjoying it.”

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Not too close to my daughter, Frenchie!

From there, we moved to a different location, where she stood for another 90 minutes. Only this time, she didn’t just stand there. She began waving her gun in front of her, occasionally “shooting” at some of the passersby. She looked like a slo-mo version of those people who stand on the street corner twirling an advertising sign. And that worked a lot better. Not only did she get many more requests for pictures, but she also got other characters to interact with her—the Halo soldiers, for instance, shot back at her.

So my girl had a good day. So good, in fact, that she’s already planning her outfit for a similar gathering in August. I think Katie’s going to take that one, though. Once a year is enough for me!

Taking It in Stride.

So what did I think of the whole thing? It was eye-opening. I spent my Saturday surrounded by people with a passion for a subject that was almost completely foreign to me. It took a little getting used to—seeing grown men and women dressed up so exotically and play-acting as cartoon characters.

Looking around at all the elaborate, ultrageeky costumes, I was brought back to my earlier years, when I would have dismissed this whole thing as just a bunch of maladjusted, self-indulgent nerds lost in a synthetic fantasy world. “Get a life!” I would have said under my breath. And I most certainly would not have allowed my children to get involved in such arcane doings. But then I went ahead and had actual, real life kids. Kids with autism. Kids with different brains and different neurologies than mine. And as a result I have learned to take a load of supposed weirdness in stride. So no, it wasn’t all that odd for me. In fact, after the initial adjustment, it felt completely normal.

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“Don’t mind us. We’re just sitting on the floor of this hotel lobby being fabulous.”

One of Us.

One brief scene from the day cemented this for me, and it’s an image that I suspect will stay with me for a long, long time. During our wanderings, I caught sight of one fellow who looked like he was in his early twenties. He stood out in part because he wasn’t dressed up as anything—just jeans and a tee shirt. He was on the up escalator, and he was holding a plush Pokémon. All the way up the escalator, he was nuzzling the thing, smiling broadly at it, and talking excitedly to it. He flapped his hands occasionally and bounced happily on the balls of his feet. He looked so happy, I couldn’t help but smile.

That’s when it hit me. This was not some poor unfortunate soul to be pitied. This was a happy, adjusted man enjoying a day out on the town. He looked healthy and well fed. He had clothes on his back and shoes on his feet. His hair was mussed up but not unkempt. He was in the midst of a huge crowd navigating a virtual rabbit warren of meeting rooms, lobby spaces, and exhibit halls, but he showed no signs of anxiety or disorientation. He was having the time of his life. I realized I was looking at him not as “one of those,” whatever “those” might mean. He wasn’t an “other.” He wasn’t even part of a different tribe. We were both part of the same tribe. But it wasn’t that he had joined my tribe and become “one of us.” Somehow, over the years of watching and learning from my kids, I had joined his tribe.

I was one of his.

Lots of Snowflakes

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My next stop was the enchanting kingdom of Arendelle, where I visited Queen Elsa. Like the other people I spoke with, she was very happy to record a message to kids on the autism spectrum. She got it right away when I explained why I was asking her to do this. You see, Elsa has special, unique abilities that most people didn’t understand, and this made her feel like an outcast. She was even denounced as a “monster” by the Duke of Weselton. She hid away for years, staying in the shadows, because she was afraid of her powers, which she couldn’t control. She also stayed in hiding because of how guilty she felt for having accidentally hurt her sister, Anna.

As you can see, Elsa was living under a dark cloud of oppression—much of it undeserved. I told her that many kids on the autism spectrum can feel that way as well. They can stand out from the crowd. They can feel as if they are too different from the people around them. Even worse, those things that make them different can overwhelm them and make them say or do hurtful things. Like Elsa, they can be bound up in guilt and fear. Some even build a colorful, imaginative world of their own, a refuge from the world where they are free to be themselves. But like Elsa’s ice castle, this refuge can turn into a prison as they remain isolated from the people who love them.

Elsa thought that her castle would protect her. She thought that it would be the one place where she express everything unique and awesome about herself. But then the outside world came crashing in. She became a prisoner of people who didn’t understand, people who didn’t love, and that made her more miserable than before.

It took an act of true love to finally set Elsa free—her sister Anna’s complete acceptance of her and her willingness to sacrifice her own life to protect her. That was the key. Knowing how much she was loved helped her lose all the negative thoughts she had had about herself—all the fear and guilt and isolation that was swirling around inside of her.

The best part about Elsa’s story is that her freedom didn’t mean that she became “normal” like everyone else. She was still the same shy young woman with a unique talent. But because she was surrounded by love, she learned how to harness that talent and use it for good. She let go of the bad stuff and embraced the good. And because of that, she was no longer subject to her powers; now they were subject to her. In the end, Elsa was free to be the one-of-a-kind person she always was. And that’s what she wanted to share with everyone.

A Whole New World of Awareness

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Here I am, posing with Aladdin and Jasmine, prince and princess of Agrabah. I’ve always liked their story, and not just because the Genie is such a hoot. There’s something touching and inspiring about this couple, and I was eager to tell them what an inspiration they were.

Always called a “street rat,” Aladdin didn’t think he would amount to much. He resigned himself to accepting what other people said about him and  acted like a street rat. But then he met Genie, who transformed him into Prince Ali and helped him win Jasmine’s heart. Aladdin’s adventures showed him that it was possible for him to break out of the restrictions people had put on him. And so, emboldened by his newfound courage, he defeated the sorcerer Jafar and set Agrabah free.

For her part, Jasmine was a thorn in her father’s side. She insisted on marrying for love and not for political expedience. In fact, her determination not to be confined by other people’s expectations had a major role in inspiring Aladdin to break out of his shell.

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So meeting Aladdin and Jasmine was fun. But it was even more rewarding telling them about some of the challenges that kids on the autism spectrum face. I told them how much potential these kids have—that they’re “diamonds in the rough,” just as Aladdin was. I also told them how easy it could be for these kids to accept a lesser vision for their lives simply because of the way other people treated them.

As sad as they were to hear all this, there were also touched to learn how many of these children are deeply loved by their parents and that their parents weren’t going to give up until they gave their kids the best possible future. This moved Aladdin especially, since he grew up alone and had no one to take care of him. Talking with them, you could tell how happy they were to see these kids being surrounded by such love and encouragement.

And so they were more than happy to send a little message to all the ASD kids out there. Click on this link to see their special message.