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!
Some random thoughts as I watch my son perform in the Frederick Children’s Chorus Christmas concert.
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:
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.
I’ve been feeling pretty good lately, and I’ll tell you why. My oldest daughter (14) did something that impressed me no end. Her Health class has been studying mental illness for the past couple of weeks. You know, the usual teenage awareness stuff: depression, anxiety, anorexia, suicide. It was all going pretty well, too. No negative blowback from my girl, even though she’s keenly aware of her own diagnoses.
But then the class turned to ADHD, and this happened. Introducing the lesson, her teacher said something like, “Now let’s look at another disease, ADHD.” This prompted my daughter (who has ADHD along with autism) to raise her hand. “Excuse me,” she said, “but ADHD is not a disease. I have ADHD, and I’m just fine.” The teacher, caught off guard, apologized for having misspoken, and then moved on with the lesson. Pretty impressive, wouldn’t you say? She definitely deserved an attagirl for advocating like that.
However, when she told us the story that night, I could tell she was more upset than she let on at school. Because she tries hard to be good in class, she kept her response there short and polite. But she let it all out at dinner. “We’re not diseased,” she declared, pounding the table with her fist. “We’re different, not less. Why do people do this to us? I can’t believe he said this. And he’s a Health teacher. He should know better!”
I couldn’t agree with her more, and I told her so. I also told her how proud of her I was. It was wonderful to see that my daughter has her head screwed on straight and doesn’t tolerate nonsense. She gets that ADHD—and autism, for that matter—is nothing to be ashamed of. She gets that she’s not diseased or locked in to a life of limitations. She has hopes and dreams and ambitions, and she’s determined to accomplish them—no matter how much BS she has to deal with along the way.
A Quick Pivot.
All of this got me thinking about recent events, especially the mass shooting at Umpqua Community College in Oregon. News of that attack seemed to be a kind of tipping point in the gun control debate. With President Obama taking to the podium yet again, this time sounding exasperated and even disgusted, people are talking about gun violence more seriously. And that’s a good thing.
But all this attention has its down side. For every time another mass shooting occurs, talking heads on TV and the radio pivot almost instinctively to the topic of mental illness. They decry the sorry state of mental health care in the country, and suggest that if we only did better at this, massacres like these wouldn’t happen. And when I hear stuff like this, I cringe.
Stigmatizing the “Other.”
Of course, I’m all for improved mental health care, but there is no real science linking mental illness to mass shootings—or to shootings in general. In fact, those with mental illness are far more likely to be the victims of such catastrophes than the perpetrators. As The New York Times recently reported, “Fewer than 5 percent of gun crimes are committed by people with mental illness; fewer than 5 percent of people with mental illnesses commit violent crimes.” And so I cringe every time mental illness enters the conversation. I can already feel the damage that it will do to people with mental illness.
Something else troubles me about this conversation, though. Whenever mental illness is brought up in the context of a mass shooting, autism follows fast on its heels.
Mental What?
I commented on this back in 2012, when MSNBC host and former Florida congressman Joe Scarborough insinuated that James Holmes, the Aurora, Colorado, theater shooter, had autism, and that this was a major reason for his attack. Scarborough’s comments prompted a huge outcry, and he later issued a semi-apology. But it was too late; the damage had already been done.
But now it has happened again. Not long after the Oregon shooting, a Facebook page popped up called “Families against Autistic Shooters.” It was vicious and hateful—and more than a little ill-informed. Fortunately, the page didn’t last very long. But the fact that it showed up at all demonstrates that we still have a lot of work to do.
The speed with which people glide from mental illness to autism is as confusing as it is disheartening. ASD is not a mental illness. It just isn’t. It is a neurological difference (disorder if you must) in which the autistic person’s brain is wired differently from the typical person’s brain. But it’s not an illness. You can’t control it with medication, as you can control OCD or anxiety. You can’t shock it away with electrodes as you can do to severe depression. You can’t “overcome” it through talk therapy or yoga or meditation. You can’t even pray it away. It just is, and the best thing you can do is make room for it.
Words Matter.
I’m not saying that everything is rainbows and unicorns for autistic people—especially those with more severe manifestations of the condition. But let’s not call it an illness or a disease. That’s where the word cloud at the top of this post comes in. It’s a list of famous, successful people, all of whom are autistic. Ask any one of them, and I doubt any one of them would call themselves mentally ill. And they shouldn’t.
Words matter. They tell you what something is—and what it isn’t. If you call a cat a fish, and try to put it in a tank full of water, you’ll be doing an injustice to the cat. (You’ll also end up a bloody, scratched-up mess.) If you call autism a disease and treat it like a disease, you are doing something very similar—an injustice to autistic people. For calling it a disease naturally opens the door to discussions about cures. And that can get pretty dangerous. Just ask the people who have been subjected to bleach enemas and chemical castration in the name of a “cure” for autism.
If you accept that autism is a difference and not a disease, you’ll treat it differently. Instead of spending your time and money looking for a cure, you’ll try to help autistic people navigate a neurotypical world. You’ll dedicate yourself to educating the public about the gifts and talents that autistic people have to offer, as well as the challenges they face. You’ll make it easier for others to accept autistic people for who they are, and you’ll work to eradicate stigmas and bogus information related to it. And that’s how you make autistic people’s lives better.
Lighten Up.
So lighten up on the autism stuff. People with autism already have enough to deal with. Don’t make them scapegoats as well—unless, of course, you want to deal with my daughter.
So today is Father’s Day. In honor of the day, I thought I’d dust off a post from a few years ago, update it a bit, and repost it. (That, and I’m too busy being a dad today to write something new.) So here goes:
Who’s Leading Who?
In one of the lesser-known resurrection accounts in the Bible, Jesus tells Peter: “When you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” The passage goes on to explain that Jesus said this to signify “by what kind of death he [Peter] would glorify God” (John 21:18-19).
This passage has always had special resonance for me, to the point of being a kind of interpretive key to almost all of the major events in my life. It sounds kind of grim, doesn’t it? All this talk about being led where you don’t want to go and dying—even if that death glorifies God. But that hasn’t really been my experience. Rather, I’ve found a surprise or two along the way as I’ve seen these words unfold in my life.
One major surprise came when I realized who it was who would end up leading me along unexpected paths: my own kids! Now I’m sure that many parents can relate. None of us really knows what to expect when we hold our first child. We can never fully appreciate how much our lives will change now that we have welcomed this new person into our lives. How much more when you are blessed with six children! And how much, much more when it turns out that all six children are on the autism spectrum!
Unexpected Paths.
I named an earlier post “A Little Child Shall Lead Them,” and I meant it as something more than a clever play on words. I can testify that my kids—all six of them—have led me in ways I never expected.
Death and Freedom.
Now, Jesus told Peter this stuff as a way of hinting at the kind of death that awaited him. And that has proven true for me as well, in a more figurative way. No, I’m not writing from beyond the grave! But my kids have definitely led me to experience other kinds of “deaths”—
It’s ironic, but each of these deaths has made me feel a little more alive and free. Little by little, my kids have led me to a place of surrender. Not defeat. Not resignation. But acceptance. I have learned so much about myself; about human nature, both the bad and the good; and about God that I feel like I’m a very different person now compared to who I was when our first one was born. And that leads to the final part of this passage.
An Unforeseen Glory.
According to the story, Jesus was pointing to the way Peter’s death would glorify God. Well, I’m not about to think that I give God all that much glory. Not unless he is glorified in huge messes! But I do think that the deaths I listed above have helped me to see God’s glory in new, unexpected ways.
So yeah, there’s a lot of good stuff that comes from these little, unlooked-for deaths. Leave it to religion to be so delightfully paradoxical!
This Is My Body.
For those of you who don’t know, I’m a Catholic, so this last one comes from my faith tradition. More than anything else, I see God in the bread at Mass as he says, “This is my body.” But I don’t just see and believe. I’ve also found the audacity to pray in return: “Hey! Over here! This is your body, too—this precious family you have given me. We’re part of you, and we all belong to you. So don’t pass us over or forget about us. You made my kids this way, so you’re stuck with us.”
Then I go one step further and tell him, “And here is my body, my life. It’s nowhere near the image of you that it’s supposed to be. It’s still too much shadow and not enough light. Still, I offer it to you. Go ahead and keep leading me, even if it’s where I don’t want to go. With all of these little deaths, you have found so many ways to empty me. And I guess that’s fine. But now I need you to fill me and raise me up so that I can give myself—body and blood, soul and humanity—back to my children.”
And the Lord reaches out his hand to grasp mine, and responds: “Amen.”
Happy Father’s Day, everyone!
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