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.

Pressing the Reset Button

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I learned (again) a lesson I never tire of learning. I guess it’s a good thing I don’t mind, because it’s a lesson I keep having to learn!

We had the pleasure of hosting a friend and roommate of mine from college for dinner. A Franciscan priest, he was recently assigned to a parish in nearby Baltimore. It was a lovely evening, even if it wasn’t a long one. He was up here in Frederick to fill in at  Mass in a local parish.

It was a delightful evening. I hadn’t seen this fellow in about five years, and we picked up again as if it was just yesterday. While we caught up, the kids came and went, some showing more of their autistic “quirks” more than others, and my friend flowed with whatever was going on. Even when one of my kids, full of social awkwardness, hovered nearby, scowling, for nearly ten minutes before coming forward for a formal introduction.

After he left, I felt so much more calm and content than I had all day. A couple of very strong melt downs sapped me in the morning, and I had to go into the office to file a boat load of insurance claims, many of which I wasn’t even sure would be covered. I kept feeling the tension rising all afternoon. But after spending just two hours with my friend, it just melted away. I felt like I had hit the Reset button.

A Big World Out There.

So here’s the lesson I keep on learning: I don’t have to get swept up in this autism parenting gig. I don’t have to resign myself to feeling that everything is closing in around me. There are other people to spend time with. There are other things to do. There’s a whole big world out there.

Of course, I need to keep a balance so that I’m caring for my kids properly, but I also need to come up for air every now and then and get a little break. Work is hard—often 50 hours a week. Kids have needs that can’t be ignored. Therapy sessions continue unabated at a pace of about five a week (I split them with Katie). Tantrums, melt downs, and communication miscues are a normal part of our everyday life. The list goes on and on and on, and there’s no sign of any major changes in the air.

It can be an isolating life, also. I can get so worn out that I can start thinking I don’t have the energy to relate to anyone else. I can feel so isolated because not too many people get what I’m talking about—and what else do I have to talk about except for this? Of course, none of this is really true, but it can start to feel this way. So if I don’t step out of the vortex every now and then, I won’t be of much use to my kids or my job, much less to my wife.

I wrote about this a few years ago and again just a few months back, and the same truths apply today. I don’t live near Disney World any more, so I don’t have a ready-made “happy place” to escape to. But I still need to escape. I just have to get more creative and more flexible to make sure it happens. I’ve got to find ways to unwind. I’ve got to find ways to get out of the house, even, if only to enjoy the benefit that a change of environment gives. It’s not like the place will collapse without me. I’ve got to give myself permission to step out every now and then. Everyone will still be there when I get back. And I’ll come back much better equipped to help them.

“I’ll Miss the Kick-Ass Bitch”

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The following depiction of a homeless woman with mental illness was posted by my brother on Facebook a couple of days ago. It was so moving that I thought I’d share it with all of you.

A bit of background: My brother is an attorney in the public defender’s office in the suburbs of Baltimore. He acts as legal counsel for those who cannot afford their own lawyer. A good portion of his clientele are drug offenders. Many of them are homeless. Many also suffer from mental illness. And he’s there to make sure they get the legal counsel that is their constitutional right. It’s a job he has had for decades, and he relishes it. Anyway, here’s his story. I dare you to read it and not be moved.

“I Need Help!”

A long-time client of mine who became a dear friend was killed in a hit and run homicide. She was chronically mentally ill. Her illness eventually forced her mother to put her out. She kept coming back to see mom. After a few days, things would get out of hand. Her mother, understandably, had to get a protective order to keep my friend away.

She was on disability, but that paid only enough for her to rent a room in someone’s house. That always ended badly. The police were called. She went from one shelter to another. Again, it would work out for a while, then she would run out of her meds or lose them or have them stolen. She’d be asked to leave. They would eventually ban her because of her behavior. No medication always led to bad things. So my friend would eventually end up homeless. Alone. It was hard for her to be around people. But when everything was under control, strangers liked her. She had a genuine and open smile.

Not too long ago, I was visiting a client who was housed in the same unit as my friend was. She had to be locked in her cell because she had acted up. I heard her screaming louder than anyone could bear to hear, “I need help.” It went on for so long that I had to cut my visit short.

The last time I saw her, in a holding cell just before she was released, she told me that all she wanted to do was hug her mother. Just once. Now, my mother isn’t here to hug. I can’t imagine knowing that mom is not far, but she genuinely needs the law to keep her daughter away. Only one hug.

She died alone. The coward who hit her just kept on going. She was homeless. She was disposable. She was invisible. She was so funny that tears would literally stream down my cheeks when she got on a roll. She told me that when I needed help, the kick-ass bitch (her) would straighten things out. She was a human being. She was my friend. She was a human being.

She died alone on the street.

She was killed early last Monday morning. I found out about it Tuesday afternoon. Wednesday morning, it hit me like a cyclone. Spun me around. I remembered that a friend always says Mass on Wednesdays near my office. I met him in the parking lot, sobbing. He asked the people there to pray for her. They are a small group of retired nuns. Some in their eighties, a few over ninety. They will pray for her. I will pray for her. I’ll miss the kick-ass bitch.

Homeless, Hopeless, Helpless.

It is a sad fact that many people with mental illness end up like this woman—homeless, hopeless, and helpless. Disposable, as my brother said. So many end up in prison because they have nowhere else to go. In fact, there are those who purposely commit crimes so that they will at least have a shot at food and shelter. That’s how low they have fallen. That’s how much society has failed them.

I have written before about my children having comorbid conditions along with their autism: OCD, anxiety, and the like. These are mental illnesses, plain and simple. The only difference between them and this woman is demographics. I make a decent living. Katie and I are able to provide a stable, loving home environment where they can grow and thrive. We make sure that they receive the medical and psychological care they need so that they have a good chance of living independent, self-sufficient lives. Of course, none of this is a sure-fire guarantee, but the odds are significantly better.

Many, many people are not so lucky. They are the forgotten, the ignored, the abused, the ragged people living on the margins. Thank God for people like my brother—true advocates and servants who are committing themselves to helping these people as much as possible!