See that picture? That’s my wife and my daughter (15) taking a walk. Oh, and our dog, Roxie. Do you know why I’m posting this picture? Not because I love these two (which, of course, I do), but because of how proud I am of my little girl. The fact that she is out on a walk shows how courageous she is.
You see, about four weeks ago, my daughter had a seizure. It was her first. Not a little tremor—a grand mal. You know, the kind where you’ve fallen to the floor convulsing, with your eyes wide open but seeing nothing. The kind where you can’t remember anything about it. The kind where you wake up as the paramedics are gently placing you on a stretcher and wheeling you into an ambulance. Terrifying stuff.
Then, ten days later, she had another one. The first one was in our house, but this one was out in public, at a food court. Again, it was a grand mal, and it lasted longer than the first one. Fortunately, I was there with her, so I knew to roll her onto her side, cradle her head, and wait it out. Again, she woke up, disoriented, to emergency personnel hovering around her.
So what does this have to do with the picture up there? Everything.
Overcoming “What If.”
Events like these would be traumatic for any adolescent girl; they can be positively paralyzing for a girl with ASD and anxiety disorder. The randomness of the seizures, the lack of memory, the waking up surrounded by strangers—it’s all so upsetting. The largest question that looms in her mind now is “What if?” What if I have another one? What if Mom and Dad aren’t around? What if it happens in front of my friends?
She’s on anticonvulsants now, and she hasn’t had a seizure in two weeks, but that doesn’t matter. The anxiety is so big, and the autistic tendency to perseverate is so strong, that the mere possibility of another event has kept her pretty much homebound ever since. She even missed an appointment with her counselor, whom she really likes.
Now do you see why this picture is so precious to me? Katie and I have convinced her that she needs to start getting out. We’re starting slowly, having her join us as we walk the dog in the mornings. And she’s doing it! She’s walking, she’s talking about everyday stuff, and she’s not perseverating over the seizures.
(The walking stick? That’s because she has mild scoliosis, and it helps her posture.)
Now take a look at this picture. Do you see that plush doll in the crook of her right arm? That’s Phantump, one of her favorite Pokémon characters. She is rarely separated from this creature, and when she is, she’s holding another one of the more than 100 she has collected over the years. They are her security blanket. They bring her comfort. They help her bridge the gap between the fantasy world she so enjoys and the real world, which is fraught with challenges and dangers.
So there’s my daughter, out in public with a walking stick and a plush Pokémon. While most girls her age are swooning over boys, preparing for their learner’s permit, and paying close attention to their appearance, here is my girl, walking to the beat of her own drum. She’s fighting her fears. She’s facing down her anxieties. She’s pushing through some things no fifteen-year-old should have to face. And she’s still standing.
There was a time when I’d object to the plush doll. “You’re a young woman now. For God’s sake, leave that thing behind!” There was a time when I’d try to force her to push through her fears more quickly than she was ready to do—usually to disastrous results. There was a time when I knew pretty much what I wanted her (and all my kids) to be, without paying too close attention to her unique personality. But if walking this autism path with my kids has taught me anything, it’s to throw away all of my expectations and to not care about how other people look at them. Those concerns were more about me than the kids, anyway.
So march on, girl! I don’t care if you need to take five Pokémon with you. I don’t care if you choose one of the most ornate, obvious, obnoxious walking sticks possible. Do whatever you need to do. Just keep moving forward. Today, it’s a walk with Mom, Dad, and Roxie. Next Sunday, it may be joining the whole family at Mass. Or maybe just part of Mass. Or maybe not yet. It doesn’t matter. Take it one step at a time, and we’ll be right there with you.
* These pictures, and this story, have been posted with the kind permission of my daughter (and, of course, my beautiful wife, Katie).
“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.
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.
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.)
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>
Check out this article that appears on the website of America magazine. It’s lengthy and theological, but the author, Candida Moss, makes an excellent point. She talks about how disability is viewed in the Bible, and how a misunderstanding of the Christian tradition, by overemphasizing God’s healing power, can unwittingly place people with disability on the margins.
According to Moss, many of the healing stories in the Bible can be used to “reinforce the understanding that disability is a deviation from the way God intends us to live.” In other words, disability automatically equals defect. In some cases, it also means sin—or even demonic possession. So a person with a disability is in need of a cure, someone who needs to be made different than who he or she is before gaining entry into heaven.
As a counterbalance to this interpretation, Moss asks, “Can we find ourselves as ourselves in heaven? Can the view that God loves the disabled as they are be biblically sustained?” For answers, she turns to the story of the Doubting Thomas. After the resurrection, Jesus appeared to Thomas not as a completely restored person, but as one still bearing the marks of his crucifixion: “Jesus’ wounds are an integral part of his identity. It is by his wounds that he is recognized.” So “If God incarnate is known by his glorified impairments, why would we not hope for the same?”
No Cure Needed.
As I’ve written before, I have long had a strong gut reaction against the thought that you can pray the autism away. Autism is woven so finely into my kids’ identities that to take it away would be to unravel an essential part of who they are. I find it hard to believe that, in order to be made worthy of heaven, they would have to be unmade as autistic individuals. I find it hard to believe that all the things they have learned and become precisely because of their autism has little significance or value.
My kids have spent their entire lives as autistic individuals. To a large degree, autism has made them who they are. Their “otherness” has dramatically shaped the way they live, love, and function in the world. What’s more, they have taught numerous people (most especially Katie and me) valuable lessons about what it means to be human, to love, and to be loved. I would hate to think all of that has to be left behind once they enter heaven’s gates. Who would they even be then?
What Do I Want?
So what would it mean for my kids to find themselves as themselves in heaven? Here are a few things I would want to see.
- I want them to be able to appreciate the world for the beautiful work of creation that it is. I want them to enjoy the sights and sounds and smells, the tastes and textures, of everything around them. And that means I want them to feel free to flap their hands, jump up and down, or react however they want to the beauty that will surround them.
- I want them to be able to enjoy a quiet walk in the woods and not get scared by the rustlings of a busy forest. I want them to revel in the feel of sand between their toes and delight in the sound of the crashing waves—not run in terror of them.
- I want them to feel free to share their unique, quirky insights without being mocked or marginalized. Heck, I want them to be free to share, period, and not be so anxious about communication that they can’t put a complete sentence together.
- I want them to no longer feel the need to lash out or clam up or hurt themselves when they get overwhelmed. Or better yet, I want them not to ever have to feel overwhelmed again.
- I want them to enjoy a world that accepts and treasures them for who they are. A world that doesn’t judge or sideline them because they are different. I want them to be in an environment where they don’t have to feel constrained or threatened by unnecessary expectations. A world where they can lose their anxiety over fitting in.
I’d Change the World for You.
Now, you’ll notice that some of these bullet points focus on my kids’ own healing and others focus on the world around them. And that is as it should be. For many of the challenges that my kids face come not from themselves or their unique neurologies. They come from a world tainted by sin and in need of renewal. They come because of the “structures of sin” that promote intolerance, ignorance, prejudice, and small-mindedness.
There’s a popular meme in the autistic community that says “I would not change you for the world, but I would change the world for you.” As a parent with two eyes, I know there are things in my kids that need to change—just as there are in me. But I also know that the world they are living in can be cold, cruel, and inhospitable to people who are different. And that’s the biggest change I’m anticipating.
So yes, I want to see my kids healed, and I believe they will be—of the selfishness and fear and pride that infects all of God’s people. But I don’t want them healed of their autism. I want them to remain the same loveable, quirky, autistic people that they are right now.
After all, that’s how God made them.
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.
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.”
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.
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.
Take a look at this article from The Washington Post. It covers a controversy that has been roiling the campus of my alma mater, Mount St. Mary’s University, in Emmitsburg, MD, for the past few months. It seems that the newly-installed president initiated a survey for all freshmen to take early in their first semester. It was presented to the students as a way of helping them get to know themselves better as they transition from high school to college, and to help them understand better “the person you are and could become.” Fair enough. Everyone likes taking personality inventories and surveys like the Myers-Briggs Type Indicator. It’s helpful to know what instruments like this tell you as you begin your academic career.
Only that’s not what the survey was really about. It was designed to help the university identify which students were at the greatest risk of dropping out so that administrators could encourage these students to leave early in the semester. And it was done in the hopes of boosting the school’s retention rate, thereby getting it better ratings in places like the US News ranking. The information in the survey was meant to be shared and discussed, not just scored and returned to the students for them discuss with their advisors.
Probing, Inappropriate Questions.
Now, the misrepresentation of the survey’s purpose is bad enough, but what’s worse is the fact that some of the questions are one-sided and not really related to its stated goal. Have you experienced a death in the family in the past year? Are you taking on major student loans? I don’t see how questions like these can help the students come to know themselves better.
But wait—it gets worse. An entire section of the survey is dedicated to the student’s mental health. They are asked how strongly they identify with statements like: In the past week . . . I felt depressed. I felt that people disliked me. I thought my life had been a failure. These are very personal questions, and the students should never be asked to divulge this kind of information—especially in a survey that is not kept confidential. They are also asked if they think they are calm and emotionally stable. Can they be trusted with money? Are they a hard worker? Have they been obsessed with a certain idea or project and then lost interest?
Then comes the final indignity. The closed-ended section of the survey ends with a question that comes out of the blue: Do you have a learning disability?
A Breach of Trust.
The best word I can find to describe the survey and its intended use is repugnant. Targeting for removal students who report feeling unstable is bad enough, but then expecting them to divulge whether they have a learning disability crosses several lines.
First, a student with a disability has the right not to disclose that disability to the school. At all. Ever. It is no one else’s business except the student’s—and anyone to whom he or she wishes to reveal it. It’s like Federal HIPAA guidelines; this information is protected by law.
Second, if a student does disclose a disability, the school is obligated to work with that student to determine the appropriate “academic adjustments” that will ensure that he or she is given an equal education opportunity. While not as stringent as the IEP process for elementary and high school students, the Americans with Disabilities Act lays out specific requirements for colleges—at least for those colleges, like Mount St. Mary’s, that accept government funding.
Finally, the school is obligated to keep this disclosure confidential. A teacher may not tell other teachers or students without the student’s permission. An advisor may not tell the president or dean. Again, it’s up to the student to decide who should know and to inform the appropriate people.
What is disturbing in this story is the implication that someone with a learning disability doesn’t belong in college. Or that someone struggling with anxiety or depression should drop out. It turns colleges—especially small, private ones like The Mount—into enclaves for the elite and privileged, for the well-adjusted and socially savvy.
But there are plenty of people with disabilities and disturbances who are more than capable of succeeding in higher education. What’s more, plenty of these people have the potential to go on and do great things with their lives—and great things for the people around them. Robin Williams comes to mind. So does Theodore Roosevelt. Or Charles Shulz. And, of course, Temple Grandin.
Not to mention, the presence of students who “deviate from the norm” is a great gift to any campus. Not to get too maudlin, but students like these challenge their peers’ assumptions and prejudices. They redefine the word “ability” for their teachers. They are a humanizing influence, opening people’s minds and hearts at a time in their lives when they are making crucial decisions about the kind of person they want to be.
I have children who would absolutely bomb on this survey, but who are earning As and Bs in high school. How would they fare? Or worse, what would they think of themselves when asked all of these questions? I hope they would have the common sense to either lie or leave them unanswered. I would be thrilled if they had the courage to challenge the whole thing and refuse to answer a single question. But I don’t know how they would respond. I can’t help but think of how questions like the ones above could convince someone that he or she really doesn’t belong . . . when it’s just not the case.
Praying for a Turn-Around.
I spent four wonderful years at The Mount. I graduated Summa Cum Laude and went on to earn a masters degree and pursue a meaningful, successful career in Catholic ministry and publishing. Much of that I owe to the education I received there and to the spirit of camaraderie and Christian charity I experienced there. But the first semester of my freshman year was hell. I was homesick and depressed. I felt overwhelmed by the work load. I started off in a dorm room with obnoxious, mean-spirited roommates. I didn’t know how to navigate the social mores of a college campus. It took me a while to adjust, to find my niche, and to settle in. Once I did adjust, however, there was no stopping me.
I would have failed that survey; I would have been encouraged to leave. But that didn’t happen. There were enough faculty and upperclassmen who knew how to help freshmen like me find their way. They embodied the best of The Mount—and the best of the Catholic faith. It saddens me deeply to see this happening at an institution that means so much to me. I can only pray that things will turn around soon.
This is a story about a story that never became a story. Got that? A story. About a story. That never became a story.
A couple of weeks ago, I wrote a blog post about an incident that happened in our house over the holidays. But because it was a story about a couple of the older kids, I didn’t hit the Publish button right away. My older kids are on Facebook now. They have virtual friends. They’re connected to some of their cousins. And the story I was telling could be interpreted in more than one way. I saw it as an illustration of some of the challenges that teenagers on the spectrum face—along with a hopeful, encouraging conclusion about how my kids are working through these challenges. But other people might focus only on the challenges and the difficulties, and they might get the wrong impression about my kids.
See, I know a thing or two about ASD. I get it in ways that many other people don’t. Sure, my story might help people understand autism a little better, but at what cost? The way my kids’ friends perceive them? The way my kids perceive themselves? Was I putting them out there in the wrong way? It didn’t seem so to me, but I wasn’t sure.
So I did something I had been thinking of doing for a few months. I told them that I occasionally post stories about being an ASD dad on social media. Then I e-mailed my story to them and asked if they’d be okay with my posting it.
They were and they weren’t.
One of them had an easygoing response. “Whatever raises awareness, Dad, I’m okay with. I know you’d never make me look bad. I don’t even have to read your story. Go ahead and publish it if you think it will help.”
The other one was not okay. “I don’t want people to think I’m a nervous, insecure, insane, freak!” That’s all I needed.
And so the story never became a story.
Careful . . .
It seems we’ve entered a new era. When I started this blog back in 2012, it was easy to tell stories because the kids were young and unconnected. Now I have to be more selective. But that’s okay. I’m sure there will be plenty of stories to tell that don’t run the risk of putting them in a bad light. Stories like this one about my boy’s success at singing in the chorus. Or this one about my daughter correcting one of her teachers. Or this one about the Catholic psychologist who wrote some really messed-up stuff about ASD and who I convinced to issue an apology.
Part of me will miss telling some of the harder stories—not because I want to embarrass my kids, of course. I’ll miss it because there’s this perception about ASD out there that it mostly affects little kids, and that’s just not true. There are plenty of stories about young children, who are so damned cute and whose parents are just beginning to come to grips with a new diagnosis.
But there’s another whole population of ASD folks out there. They’re older, and it’s not so cute when they do some of the quirky things that autistic kids do. When someone is five, he’s precocious; when he’s 15, he’s rude. She’s given much more leeway when she’s three because she’s expected to “outgrow” her autism; when she’s doing the same thing at 13, she’s stubborn, willful, or disturbed. Of course, none of this is accurate, but it’s how they are perceived.
So I’ll be more careful. I’ll look for the stories that emphasize how awesome my kids are. Or how far the autism community has come in gaining acceptance—and how much further it has to go. Or how much Katie and I are learning and growing as we raise our kids. Or God knows what else. Because our kids are still autistic. They will be even when they become adults. And the world needs to see that this very broad autism spectrum runs not just from low- to high-functioning, but from infancy to old age as well.
Now, would you believe me if I told you that my story-not-a-story was the best thing I had ever written? No? Well, you’ll never know, will you?