It’s Not the Disability, Stupid

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Well, the disability community’s Interwebs were lighting up again yesterday. This time, it was about Meryl Streep’s acceptance speech for the Cecil B. DeMille Award at Sunday night’s Golden Globes. For those who haven’t heard, Streep embedded in her speech a bit of criticism of one of Donald Trump’s more embarrassing moments on the campaign trail:

This instinct to humiliate, when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect, violence incites violence. And when the powerful use their position to bully others we all lose.

She was referring, of course, to Trump’s criticism of Washington Post reporter Serge Kovaleski, especially his mimicking of Kovaleski’s disability.

In response, as he has asserted many times previously, Trump told The New York Times, “I was never mocking anyone. I was calling into question a reporter who had gotten nervous because he had changed his story.”

The Data? The Argument? Or the Person?

Many people will find Trump’s words hard to swallow, but I wonder if something else isn’t going on here. I’m tempted to believe him when he says he wasn’t mocking Kovaleski’s disability. It’s likely that, to his mind, that’s not what he was doing at all. To his mind, he was simply rebutting something Kovaleski said. Full stop.

That’s where the problem lies.

It seems that Trump makes little distinction between the words that offend him and the person speaking the words—every aspect of that person. So if Kovaleski has offended him by implying that Mr. Trump wasn’t telling the truth about seeing thousands of Muslims celebrating the Twin Towers’ destruction on 9/11, then Kovaleski himself, in his totality, is fair game. And when he looks at Kovaleski, he sees the disability as a defining characteristic, one that is available to him as he pursues his retribution.

This tactic is similar to the way Trump responded to Meryl Streep’s address—tweeting that she is “over-rated.” As if her acting talent (or supposed lack thereof) disqualifies her from offering a considered opinion on any other matter. She’s a washed-up actress, so she must be wrong. About everything.

You see, it’s not enough to engage the argument; you have to destroy the person making it.

“We Create Our Own Reality.”

I don’t think Donald Trump is a pioneer in this area, either. He may have put his own personal stamp on it, but it’s been around forever. Especially on the political stage, but in other aspects of life, many assume that the best way to win an argument is to paint the one making that argument in the most insulting of colors. So anyone who supported Hillary Clinton is an abortion-loving, traditional family-hating liberal. Anyone who supported Trump is a heartless, uneducated, white knuckle-dragger. Opponents of Obama are racists, and pro-life people hate women’s rights. Truth and facts be damned, it’s all about the character of the person. Destroy the person, and you destroy the argument. And push aside the facts.

This reminded me of a conversation that journalist (and, incidentally, autism dad) Ron Suskind had with George W. Bush advisor Karl Rove. Here’s Suskind describing their exchange:

[Rove] said that guys like me were “in what we call the reality-based community,” which he defined as people who “believe that solutions emerge from your judicious study of discernible reality.” I nodded and murmured something about enlightenment principles and empiricism. He cut me off. “That’s not the way the world really works anymore,” he continued. “We’re an empire now, and when we act, we create our own reality. And while you’re studying that reality—judiciously, as you will—we’ll act again, creating other new realities, which you can study too, and that’s how things will sort out. We’re history’s actors . . . and you, all of you, will be left to just study what we do.”

This, I think, gets to the heart of Donald Trump’s (and many other people’s) way of dealing with inconvenient facts. Take the focus off of that which can be documented, and put it on the more subjective and ephemeral. Create a new reality, and create it loudly enough, and you’ll outshout the data.

Truth, Power, and The Art of the Deal.

I’ll close with one more quote. This time from Peter Steinfels, one-time editor and now occasional contributor for the Catholic magazine Commonweal.

Mr. Trump does not appear to see public discourse as a process of establishing a state of affairs and drawing conclusions from them.  He sees it as a process of negotiating—a negotiation that is ultimately a power struggle. As The Art of the Deal advises, you open this struggle with an extreme position, or in public debate the most exaggerated, inaccurate, even preposterous pronouncement available and then, if necessary, you ratchet down.

Discourse is not, in effect, about truth. It is about power. In this respect, Mr. Trump has a quintessentially postmodern mind. The stricture against lying is about as relevant to this understanding of public discourse as the infield fly rule is to backgammon.

So no, it’s not the disability, stupid. It’s just that: calling people stupid, or lame, or losers, or has beens, or wannabes, so that you don’t have to reckon with facts.

The Pyx in My Pocket

 

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Remember my post a few weeks ago about my daughter’s difficulty with getting out of the house because of her fear and anxiety? Well, something cool happened today.

Sunday mornings can be rough for my girl. She hates going to Mass now, because she’s petrified that she’ll have a seizure—and in such a formal, public place. So I’ve been letting her stay home, along with one of her brothers to keep an eye on her (no argument from the boys, of course). To make up for it, I’ve been bringing Communion to her and her brother every Sunday after Mass. I carry the consecrated Hosts back in a little pyx like the one in the picture, and we sit go sit on the back deck together. We read one of the Scripture passages from Mass, talk about it for a few minutes, pray the Lord’s prayer, and then I give them Communion. Short, sweet, to the point.

“I Don’t Want It.”

Today was different, though. She woke up deeply rattled by two separate nightmares. She had promised me that she would come to Mass today, but the nightmares did her in. There was no way she would leave the house, and there was no way I was going to push her.

So off I went to Mass with everyone else, carrying my trusty pyx in my pocket. In the Communion line, I presented my pyx to Fr. Keith and asked for Hosts for my two errant kids. I’m all too familiar with the drill, and so is he. So far, so good.

But when we got home, I discovered that my girl was too upset even to receive Communion. She was in our bedroom, curled up on the bed, her brow furrowed in fear. Her voice quavered as she begged me not to force her not to come downstairs for our weekly Communion service. “I’m just not stable now,” she said. “I don’t know what’s wrong with me; my nightmares are getting worse, and I don’t want to leave your room.”

“There’s nothing wrong with praying and asking God for his help,” I said. “Who knows? Maybe you’ll feel better afterward.”

“I don’t know why, but I just can’t!”

She was nearly in tears, so I put my arm around her, and offered up a silent prayer. This was worse than I had seen in a long time, and I was at a complete loss. All I could do was hug my girl, with a “loaded” pyx in my pocket.

Ninety Short Seconds.

Then it dawned on me. Maybe the Sunday morning ritual we had established was just too intense for her today. The mere act of going downstairs, getting the Bible, and sitting on the deck was just too much for her to handle. It seemed so easy to me, but not to her. If she just stayed inert in our bedroom, she thought, nothing would change. She wouldn’t have to face her fears. She would stay safe in the little sanctuary she had built for herself.

So rather than coax her out into my world, I tried to enter hers. “I have an idea,” I said. “How about we sit right here on the bed, and I just give you Communion? We don’t have to read the Gospel. We don’t have to do anything special. Just a quick Our Father, and then you receive. Can you do that?”

“I think so,” she said.

It took all of 90 seconds, and we were done. And you know what? It made a huge difference. The anxiety faded. Her smile (a slight one, at least) returned. Her hunched shoulders relaxed, and she breathed a little easier.

The change was so dramatic that I was actually able to convince her to come on a couple of errands with me. Of course, I bribed her with the promise of lunch from McDonald’s, but her willingness to join me was still a marked contrast to how she had been just minutes before.

A Mini-Miracle.

Now, I can interpret this episode in a number of ways. Maybe my persistence paid off. Maybe the memory of her nightmares had faded. Maybe I had chosen just the right words, and delivered them in just the right tone of voice. Maybe the good feeling she got from doing what Dad wanted softened her up.

Or maybe, just maybe, God actually worked in my little girl’s heart and calmed her fears.

This answer makes the most sense from a faith standpoint, but it also makes the most logical sense. The desperate scenario I described above was not going to change. My girl was far too anxious. The only variable that changed in the equation was the impromptu Communion service. She eased up only after she received the Eucharist—which we Catholics believe is the actual presence of Christ.

I know this sounds odd. I know it sounds like I’m trying to justify my faith. But I don’t care. As long as mini-miracles like this keep happening, I’m going to keep believing. As long as I find help and answers in prayer, I’m going to keep giving God the credit. As long as my kids can point to evidence of Jesus’ presence and his work in their lives, I’m going to go with it.

That’s why I’m keeping my pyx in my pocket.

Shaken, Not Deterred

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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.)

Different Drums.

Now take a look at this picture.IMG_0120 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).

 

 

The Last Bottle

“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.

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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.

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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.)

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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>

 

Dreaming of Heaven

Simpsons Heaven

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.

A Breach of Trust at The Mount

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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?

Seriously?

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.

Elite Enclaves?

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.

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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