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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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.

Hey, Look! We’re on the Internet!

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No, seriously. Christopher Ulmer, a young special-ed teacher from Florida, came and interviewed us for a project he’s working on called Special Books by Special Kids. He’s been traveling the East Coast recording  his encounters with special-needs families along the way.

Here’s a link to the video. Just about all of the kids show up—all except our youngest, who was too wrapped up in video games to be bothered with an interview. Enjoy!

The Best Christmas Present Ever

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Some random thoughts as I watch my son perform in the Frederick Children’s Chorus Christmas concert.

  • I never thought I’d see this day. This is the kid who didn’t talk until he was four years old, and here he is on stage, singing! This is the kid who couldn’t sit still to save his life, and here he is patiently and carefully following the director’s every move. This is the kid who could zone out at any point and lose track of his surroundings, and here he is completely and totally engaged in the concert.
  • Look at him up there singing so enthusiastically! That autistic black-and-white thinking has enabled him to focus so completely on getting everything right, just as he has practiced it for the past four months. He is doing everything exactly as he has been taught. Every movement executed with great precision. Every word enunciated clearly and crisply. That smile radiating so innocently.
  • Seeing him so dedicated to the performance here helps me understand what he meant when he complained about chorus practice a few weeks ago. He didn’t enjoy it, he told me, “because it was too much fun.”
    — “What? I can understand not fun enough, but how can you have too much fun?”
    — “Oh, you know, all the other kids were goofing off too much, and I wanted to get down to work. They were having too much fun when I was serious about learning the music.”
  • See that picture up there? That’s the same kid at his school’s winter concert. Yes, he is in two choruses—the school chorus and the much more competitive citywide chorus. At the school’s concert, not only did he sing in the chorus, he had a solo. My son. On stage. By himself. With a microphone.
  • I used to wonder what the future looked like for him. Would he be able to live on his own? Would he find a job? Friends? Love? Now I’m dreaming about how far he’ll go in life. It seems like the sky’s the limit for this kid.
  • His other passion, in addition to music, is cooking. He often helps Katie around the kitchen. Just the other night he and I baked Christmas cookies together. He was so confident and competent, so invested in what we were doing, so willing to learn and experiment. I don’t doubt for a minute that his dream job—owning his own restaurant—is within reach. It’s not just a pipe dream that I humor; it’s a real goal that I absolutely can see him accomplishing.
  • I see what you can do, son. When I remember what you were like a few years ago and see what you are accomplishing right now, I am convinced that your future is very bright. It’s so bright that my eyes are beginning to sting. Hang on a second while I wipe them with this tissue.
  • This is the best Christmas present I could ever receive.

Soooo Tired . . .

Madeline Kahn Tired

How tired am I? Let me count the ways.

Physically, I’m tired from the early morning wake-ups from the youngest and the late-night conversations with my wife about the kids’ various challenges.

Emotionally, I’m tired from managing melt downs, redirecting perseverations, calming anxieties, and comforting socially unaware kids.

Mentally, I’m tired from attending doctor appointments with my kids and trying to keep track of which child uses which medicine, and the various effects and side effects each one experiences.

Organizationally, I’m tired from trying to figure out how to schedule therapy sessions for the kids and still keep on top of my fifty-hour-a-week job, as well as take care of Katie. And myself.

Motivationally, I’m tired from trying to help the kids who tend toward anxiety to keep moving forward and not give in to their frustrations.

Spiritually, I’m tired from battling dealing with my own bouts of fear, frustration, and anxiety.

Yes, I’m tired. And if I’m tired, just imagine how tired my kids must be. But that’s a different subject for a different post.

An Attitude against Platitudes.

I don’t like to complain because I don’t want sympathy or, worse, pity. But the plain truth is that this autism parenting gig is hard work. There are so many twists and turns to ASD that it’s next to impossible to try to plan for the next challenge. Because every person with autism is mind-bogglingly unique, there is no reliable road map to guide you through the terrain. And because most other ASD parents are worn out traveling their own path, it can be hard to connect with fellow travelers—at least anyone  who has the time and energy to listen. (Thank God for Facebook!)

So if I don’t like to complain, why am I . . . complaining? Because every now and then I like to offer a corrective to the platitudes that special-needs parents can hear. Sayings like:

  • I don’t know how you do it.
  • God only gives special kids to special people.
  • You must be really strong to handle all of this.
  • I could never do all that you have to do.

PTSD Parents.

Mind you, these sayings are usually offered in good faith and come from a place of love and respect, so I don’t want to dismiss them—or the people who say them. But idealizing special-needs parents can be similar to the way we lionize the men and women in the military. We call them heroes and warriors and guardians of our freedom. And usually that’s what they are. But such vaunted language can cloak the emotional and psychological trauma that many who have been in combat have experienced. We sanitize the brutality and dehumanizing power of war by putting “Support Our Troops” magnets on our bumpers and applauding soldiers in the airport. But these very soldiers are bearing a burden few of us can imagine—and the Veterans Administration is woefully underfunded..

I don’t mean to compare my experience to that of someone who has been shot at, or worse, who has had to kill a fellow human being. But according to a University of Wisconsin study, parents of special-needs children often exhibit stress levels comparable to combat soldiers. In fact, many of these parents are diagnosed with PTSD or situational depression. And looking back on some of the instances of high drama we’ve experienced over the years, I can easily see how this is the case. As I said above, this is hard stuff.

But back to the not complaining point. The thing is, we don’t think about how hard it is all the time, so we don’t usually complain. It usually happens only when we get really, really tired. Usually  we’re just too  busy trying to keep up and keep awake. It’s not that we’re heroic; it’s just that we love our children. Like any other parent does.

Nothing Special.

So to those who say, “I don’t know how you do it,” the answer is easy: I’m not aware of any alternatives. You don’t count the cost when someone you love needs you. You just do what you need to do.

Anyway, thanks for reading. I didn’t have a major point to make. I just wanted to get this off my chest. Katie and I are not heroes. We’re not special or extra blessed. And I’m sure most of you, if not all of you, would handle our situation just as well as we are doing—and maybe a whole lot better! We’re just everyday people trying to take things one day at a time. And we’re tired.

So. . . . Very. . . . Tired.

P.S. For those who don’t recognize it, the picture at the top is of the incomparable Madeline Kahn, as Lili von Shtupp, singing the song, “I’m Tired” in Mel Brooks’ Blazing Saddles. Here’s a link to the song. And if Mel Brooks isn’t your thing, well that’s a crying shame. Let me offer you a different visual.

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