Monthly Archives: January 2016

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.

Words for the Warriors

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Sorry about the low resolution. The sun was setting.

After visiting Aladdin and Jasmine in Agrabah, I hopped over to China to spend some time with Mulan. Because of the time difference, it was evening already. When I asked her if she would record a video message for kids on the autism spectrum, she told me she was delighted to do it. “But why me?” she asked. So I explained.

After spending years preparing for, and dreading, the role that everyone expected of her—that of a demur, domestic housewife—Mulan felt like a failure. “Why is my reflection someone I don’t know?” she wondered. It frustrated her to feel that she couldn’t live up to people’s expectations. Looking at the world around her, she wasn’t sure where she fit in or if she would fit in at all. She wanted to be herself, but she was afraid how people would react. She was afraid, too, that she would have no future unless she became someone she wasn’t.

But then war came, and Mulan’s aged father was ashamed that he couldn’t help defend his homeland. Mulan saw her opportunity and, like Joan of Arc, she disguised herself as a soldier and took his place. After an awkward start, Mulan blossomed into a confident, self-possessed woman and led an army into battle against the Huns. Finally free to be the person she always had been, Mulan saved her kingdom and restored honor to her family’s name. Not bad at all!

I explained this to Mulan and told her how similar her story is to many people on the autism spectrum. Like her, many of them are frustrated or feel inferior because they don’t fit most people’s expectations. They may not talk. They may not be interested in sports. They may prefer to spend time cataloguing their bug collection instead of going to a birthday party. People might call them “awkward” or “quirky” or far worse. Feeling like they don’t fit in, they may be tempted to give up on their dreams. I told her they needed to think of themselves as warriors willing to fight negative stereotypes. They needed to become strong so that they could make a difference in the world. And they needed the inner strength to look at their reflection and see just how awesome they really are.

Hearing all of this, Mulan was more than happy to record the video. In fact, she was downright eager to tell talk about how it’s okay to be different—as long as you’re true to yourself. She told them . . . well, see for yourself.

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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Reset Button

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.