The Big Sister Speaks! (A Guest Post)

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I haven’t had any guest posts here before, but what better time to start? My daughter Emily (the one on the left) is eleven, going on twenty-three. I wrote about her and her sister earlier this year, but she topped me with this, which she wrote for school last week. I couldn’t be prouder. It’s worth noting that we didn’t help her on this, except to clean up a few details in her timeline, and fix some minor punctuation. This is all her. And the best part is, she really lives it. Her sister does, too. I’m thinking more and more that the siblings of special needs kids are some of the most amazing people on the planet. -jh

Don’t Judge a Boy by his Diagnosis

By Emily Hague

It was June 2009, and it was that crazy year that my life changed forever. My little brother Jack was three, and I was eight. Everything seemed perfect. School was out, and my friends and I were playing every minute we could together. All of that changed when one day, when mom and dad called me and my little sister, Jenna, inside early. I had no idea that what I would learn would turn my whole world upside down.
     
I remember thinking how frustrating it was that my friends and I were right in the middle of making a perfectly good fairy house when mom and dad had to come in and ruined all the fun! Mom set the stirring spoon down next to the stove and sat down in a chair as Dad opened the door for us and sat us down on the couch. I can’t tell you exactly what was said, mainly because I can’t remember, but it went something like this: “Girls,” my dad said, “things are going to be a little different from now on.” “How so?”I grumbled. I didn’t want anything to change. “Well,” my dad said, “Mom and I, just found out that Jack has autism.” I was about to ask what autism was, when Jenna beat me to it.”What’s Autism?” I think Mom and dad had a hard time explaining this to us since Jenna was only seven and I was eight. They did their best to explain but I still didn’t understand for quite a while. All I knew was that Jack couldn’t think like we did, and that was good enough for me.
 
Three days later we moved to rainy, cold Oregon, and there Jack started going to a school called a Child’s Garden that specialized with kids with autism. I saw him slowly learn and grow, and it became obvious that he wasn’t quite like other children his age. He liked to wander off by himself. He didn’t look you in the eye, and he couldn’t talk. One morning we were excited to show mom and dad that we had taught Jack how to say “Please,” but when we told him to say it the next day, he looked at us as if to say “What are you talking about?” His mind had lost the words again. 

Suddenly it all fit together in my mind. Autism made it hard to communicate with Jack because he couldn’t talk or understand everything. It was like he was trapped in his own world. I asked Dad why Jack would stare out the window and not look us in the eyes. And he said, “He sees things differently than we do.” Little things like a light or a sound that wouldn’t bother me at all, would drive him crazy. When he pulls away into his own little world, that means he can’t cope with the light, or the sound, or whatever else is bothering him. Even now, Jack has a tendency to get attached to random things that we see as every day items (we’re not sure why), such as a certain shirt, or a spatula, or a bean can. If you take one of these things out of the equation, you get a fit.

So eventually we each developed a special way to communicate and connect with him. My personal way was and is to talk directly to him, play directly with him, not act like we’re talking to somebody from another planet. He’s a kid too. We play tickle tag throughout the house, go on walks to the park, and play games on the iPad together, just like normal siblings. Because we are normal siblings.
 

Over the years I’ve seen people look at him in his state of being as if to say,”What the heck?” And I know that they could never really understand who Jack is. As Jack’s sister, I’ve learned not to look at Jack’s outward appearance. I’ve also learned that you need to take time to understand somebody before you form an opinion about them, otherwise you could be making a big mistake. So the old saying’s true: “Never judge a book by its cover.” But in Jack’s case, I say, “Don’t judge a boy by his diagnosis.” I love Jack, Autism and all. He brings joy to my life every day, and I can’t imagine life without him.

Waiting in the Land of In-Betweens

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It happened at the end of a long church conference. I was exhausted, but the preacher was in no hurry. I hate it when they don’t hurry. 

“If you are the parent of a special needs child, come up and get prayer.”

I wanted to slip out the back, but six of our church staff were with me, and I knew they wouldn’t let me wimp out like that even if I tried. They had held up my arms for too long.  So I dragged myself to the front of the sanctuary where a line of young ministry students stood eager to pounce. I chose a tall Canadian man in a brown, business-like sweater.

“My son Jack has severe autism,” I told him beneath the ringing synthesizers. “He’s seven, and he can’t speak and… yeah…” I stopped there to brace myself for a loud and sweaty prayer. But my Canadian merely closed his eyes and started to whisper. I leaned in to hear. He sounded gentle and confident. A prince next to his father’s throne. And then it happened: He said the word “breakthrough,” and I started to weep. 

It was a frustrating moment because I thought I was done with all that. For more than two years, I had walked that familiar path of grief. Denial I remember, but only because my mom used it in an email, as in: “I think Jack has autism and you are in denial.” I laughed, thus proving her point.

Anger and Bargaining came and went quickly, but Depression lingered. There were two, maybe three years of numbness and hiding places. There were specialists and therapies for Jack, and for me, a new personality that wanted to be left alone. I used to be an extrovert, they say. 

At the time, I failed to recognized the commonness of my journey. Only when I reached the end of it did my friend tell me,

“You’ve been going through the stages of grief, and I think you just reached Acceptance.” 

It was a surprising revelation for two reasons. First, I had always thought of grief as something that follows funerals and longs for the past. I missed the obvious other kind; the kind that slumps forward, casting a permanent shadow over tomorrow that can no longer be.

But even more significantly, my friend’s assessment of my progress was spot on. I had come to terms with Jack’s condition. We had been playing together and laughing together like never before. Even on bad days, when he might be in the middle of an epic melt-down, I could still feel peace. Joy, even.

And yet despite all this, I still found myself at the front of a sanctuary in a snotty mess. Still craving “breakthrough” more than anything in the world.

Seven months have passed since that night, but I haven’t really left the foot of the stage.

I confess I want holes knocked through the wall that keeps my boy distant from me, my wife and children. I want sunbursts of language, comprehension, and relational abilities. I want him to have a future.

Some have told me to let this hope die and embrace my new normal. They say autism is part of who my son is, and if I struggle with it—if I treat his condition as a thing to be cured by human or Divine hands—I am rejecting him. This viewpoint has its merits, but the accusation inside it knocks the breath out of me, because I already accept and embrace my son. For everything he is. I delight in him, his curiosity, his affection, his laughter. And if he never learns speech, or safety, or independence, I will love him no less. 

Others have told me just to try harder and refuse contentment. They imply that it’s my fault Jack hasn’t been healed or cured yet, and if I would just get with the right therapy or take authority (i.e., pray louder), then I would finally catch my breakthrough. That accusation hurts, too, because they don’t know how hard we have tried; how many nights we have held him, wept and begged God to intervene. 

Here is my dilemma: if I pray too hard, I start fixating on change, and I become less satisfied with who Jack is today. But if I accept too hard, then I give up on a better future for my boy. And try as I might, I cannot see how to call that “loving.”

How, then, am I supposed to live? Neither of these extremes is correct. Not for me, anyway, and not for many parents of special needs children. I trust there is a solution, but it must come from Christ Himself. Who else knows how to hope all things, endure all disappointments, and love without condition?

So for now, I wait in a land just east of Acceptance and west of Breakthrough. Here, I get swept up in my son’s unbridled laughter, then in quick flashes of torrential fear. Here, I thank my Father for my boy, who is enough, and in the next breath, beg Him for more. This is where I wrestle with God: in the already not yet kingdom. The Land of In-Betweens. 

What my Autistic Son is Teaching Me About Measuring Results

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Here’s an accomplishment: I’m 34, and already on my fourth midlife crisis.

My wife says it has all been one crisis chained together. She might be right. All I know is I want a Harley, or something less practical for a father of five…

What’s my problem? Oh, just the same old midlife-crisisey stuff, but mostly this: I feel like I’m not where I should be. I have yet to finished a book I’ve been trying to write for five years. I do not have a master’s degree. I have never been picked for “So You Think You Can Dance,” and it’s been like, four years since I have won my fantasy football league.

Results are hard to measure. Success looks so relative. For me, every time I accomplish something, I look up to see a dozen other people who accomplished it ten years earlier, with ten times the results. “Oh you’re blogging? And you’ve got almost 400 followers? That’s cute. I’ve got half a million, and a book deal with Harper Collins.

Stupid twenty-five year olds getting their stupid books published…

But then I look at my son. By almost every societal measure, Jack is years behind his peer group. At seven, he doesn’t talk, ride a bike, tie his shoes, or soap himself up. He has no interest in wiffle ball or show-n-tell.

There are some formidable challenges here that can weigh down on the psyche of any parent. Concerns about the future (let alone the present!) can consume me during rough patches, especially during regressions: awful days of stress and meltdowns. Defeats. However those instances do not create a complete picture of Jack’s progress. If I insist on counting defeats, then I must also count victories. My own intellectual integrity demands it.

For example, in the past two years, Jack has learned:

  • How to initiate play with his siblings
  • How to say “mommy” and “daddy”
  • How to go potty by himself (!!!!)
  • How to stall his bedtime by claiming the potty privilege 3 times an evening. (Isn’t that so NORMAL? I love it!)
  • How to find the Netflix app no matter what folder we hide it in

There are more, of course, and most of them aren’t earth shattering discoveries either. Just real, measurable results. And these simple victories seem to fuel him.

Simple victories. I’ve had a few of those recently, too.

  • I learned to whistle two years ago, and now I rock the Andy Griffith theme like a boss. An old boss.
  • I’ve preached some sermons this year that I thought were decent, and one in March that I was actually quite proud of (because I didn’t say “are you with me?” or “does that make sense?” fifteen times…)
  • I am writing often, and some people are even reading what I write.

    • And then, of course, the bigger victories:

    • I bought a house for my family last fall, and we adore it.
    • I got a beautiful girl to marry me fourteen years ago, and she hasn’t left yet.
    • We made five kids, and all of them like me.
    • I came through a long, hard season, and I did not lose my faith that God is good.

    In order to properly measure success in life, we must acknowledge our wins and not just our losses. Then, we must, like Jack, take at least a little satisfaction in those wins.

    It’s a simple lesson, but it’s sturdy enough to help me laugh off my own fake midlife crises. (Yeah, they’re fake. Mostly.) I might not be as far along as I’d like, but I’m a blessed man with an amazing family. And together, we are moving forward.

    * Photo by Sugar Beats Photography

    Jack and his Bush's Baked Beans

    A Boy and His Bush’s Baked Beans (A Love Story)

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    It was an affair of Hugh-Grant-ian proportions. You’ve seen an aimless youth, lazy and passionlesss, morph into Romeo after a single glance from her? That was Jack. Wandering through Safeway aisles next to his mother without an inkling of how his life was about to change. But one turn around the bend, and there she was. The most beautiful thing he had ever seen. A perfectly stacked display of Bush’s Baked Beans.

    Practically speaking, Jack never cared for beans. To this day, he doesn’t eat them. But there was something about the way the gold gradient glimmered under the florescent lights that he found irresistible.

    He threw a fit when he got home, and we couldn’t figure out why he was upset. He could not tell us, of course. Even though he’s seven, he cannot really speak. His autism usually turns his words into mush, and when we do recognize them, they are either one word requests or familiar nuggets of encouragement from Bob the Builder. But this time, in the midst of his angsty malaise, his words crystalized for one clear instant: “Go to Safeway!” he commanded his mother.

    Well… a three word sentence from Jack should always be rewarded. Into the van they both went, and the moment Sara stepped out with him through the automatic doors, the boy bolted through the store. He knew where she waited. Aisle three! He came home with a can of Bush’s Original Baked Beans, round and true. You’ve never seen a boy so proud. He set his prize on the bookshelf, and flapped in his hands in front of it. His love dance.

    It was a fine discovery for Sara and I. These bean cans have since proved a fine reward for completed sticker charts. In an otherwise dismal summer, Jack has had flashes of strong motivation during “work time.” The Safeway trips have become more frequent, and the cans have multiplied. Original, Vegetarian, and Country Style. We have bunches of them. He lines them up and flaps them. He runs around the house with them. He holds them at night like teddy bears.

    beansdonationThen came our big church-sponsored event. It was an outdoor festival: a concert, kids’ fair and, most importantly, a fundraiser and food collection for the local food shelf. Two cans of food got you in.

    I was on Jack duty that day while Sara took the other boys. Jack is terrible in crowds. Really. He has no sense of boundaries–his or other peoples–or of danger. But on that day, he saw the food donation table, and that was the only place he wanted to be. I wasn’t supposed to be working that station, but I ended up helping take donations for about an hour, while Jack searched the table for any cans of Bush’s Baked Beans. He would find them all of them: short cans, tall cans, cans of every flavor, all golden and glorious. We would hide them, and he would find them again.

    We told him he could choose a can to take home since we brought extra donations, and he took a long time to choose. When he did, his decision left me speechless…….
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    vancamps
    Wait, what? Van Camp’s? I don’t get it either. But like so many other things with our boy, we just shrug, laugh, and go with it.

    “Here’s lookin’ at you, kid.”

    To See Your Thoughts Take Shape

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    I want to trip inside your head
    Spend the day there…
    To hear the things you haven’t said
    And see what you might see

    I want to hear you when you call
    Do you feel anything at all?
    I want to see your thoughts take shape
    And walk right out.

    -U2 (“Miracle Drug”)

    “Waffle! Waffle! Waffle!”

    The word rushes out of Jack’s mouth. He is panicked. We try to calm him down. We offer him waffles, but he turns his head. We know it’s not about the waffles, but we had to try.

    I get down to his level. “What’s the problem, bud? What do you want?”

    He reaches up my shirt sleeves and digs his nails into my arm. “No scratching, Jack,” I snap, a little too harshly. He doesn’t hear me.

    “Waffle! Waffle!”

    That’s when the screaming starts. As a baby, long before his autism diagnosis, Jack had the rare ability to cry like a Ring Wraith (Nerd points to you if you catch that reference and can hear it right now.) He grew out of it, but found it again all of a sudden when he was five. It took us two weeks to discover why: he had been on a Monsters, Inc kick. If you’re like Jack, there’s a lot of fine screaming to emulate in that film. We made the DVD disappear, and he soon forgot about his talent.

    In the last six months, however, the scream has resurfaced. And this summer, he has perfected it. It’s loud, a bit scary, and immensely sad.

    Sometimes his problem is obvious: he is annoyed by the baby’s crying, or the iPad battery died, or he can’t find one of his prized cans of Bush’s Baked Beans. Other times, his cries are a complete mystery. He cannot tell us what’s wrong. The screams are not respecters of setting: they come out in the car, the grocery store, or the backyard. I worry that one of our neighbors might call the police, and not out of suspicion, but out of sheer concern for the boy (“Hurry! It sounds like he’s dying, officer!”).

    Yes, it’s been a long, lousy couple of moths of tantrums and regressions. Not that this is new. Summer is always hard. I suppose if you’re as OCD as Jack, the lack of a routine must be frustrating.

    Sara has caught the brunt of it. I’m at the office for most of the day while she’s at home trying to decipher all of this. She told me tonight she thinks that “waffle” is just his frantic attempt to communicate that something is wrong. Maybe he is scared. Maybe he is hurting. Or maybe something just seems off. So he reaches for a word–any word–and that’s the one that comes. It makes sense since he eats waffles every day.

    I like her theory, if only because it sounds so normal. When stress comes, we all have our go-tos for comfort: Nail biting, griping, eating. Given enough stress and enough habit, those responses can morph into unhealthy addictions. For Jack, maybe just the idea of waffles is enough to fill that comfort gap.

    But that’s the most troubling part. We don’t know why he needs comfort, and he cannot tell us.

    Forgive me. I don’t mean to sound melodramatic. We’re okay. We’ll get through this. I just hate that this wall still stands, four years after his diagnosis.

    I want to see your thoughts take shape, boy. More than anything else.


    My Imaginary Support Group Gets in My Face

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    After not being able to blog for almost four months, I finally hauled myself into an imaginary support group meeting with other autism parents. This is how it all played out… in my head.

    JH — Hi, I’m Jason, and I’m a lousy autism blogger.

    GROUP [in unison] — Hi Jason!

    JH — Hey. Thanks. But… It’s just that, I don’t really belong here. In cyberspace, I mean. Writing about autism.

    Sweater Guy — Tell us why you feel that way.

    JH — Well, for starters, I’m not an autism expert. I know my son, but that’s about it.

    Sweater Guy — Are you saying you know Jack, but besides that, you know… Jack?

    JH — I see what you did there. Very clever.

    Sweater Guy [after a high five from Captain Mustache] — Jason, all of us feel that way. We’re all just–everybody, say it with me:

    GROUP — “…On an unplanned trip to Holland.”

    JH — Yeah, I’ve heard that line before. I get it, but… you, Steve is it? You lead a coalition to change insurance laws. And you in the green. You have a degree in the childhood development field. I’m just a dad.

    Hair-in-Buns Lady — Is there really such thang as an honest-to-goodness expert in autism, Jason Hague? I mean, if you seen one chawld with autism–

    JH — “You’ve seen ONE child with autism.” Yeah, I’ve heard that one too. But I don’t know if I even want to write about this.

    GROUP — [laughter]

    JH — What? What’s so funny?

    Captain Mustache — You think we wanted to write about this? Dude, I wanted to write about Pez Dispensers. I have the best collection, as far as I know, on the west —

    [Sweater Guy clears his throat loudly. Silence follows.]

    Captain Mustache — Sorry, sorry. We’ve been working on launching out into conversations nobody cares about… The point is, I wanted to write about Pez, but I found out other parents needed what I had.

    JH — You have a degree?

    Captain Mustache — No. I have experience, dude. Experience with my son’s emper tantrums. Early diagnosis. Expectations. Pediatricians. Special schools. Social Stories. You’ve got some of those same experiences, dude. People want to hear about it. Young parents, especially.

    JH — Well, my wife does a better job of writing advice like that. She’s super mom. No, seriously. She wears the suit to bed and everything.

    Hair-in-Buns Lady — That might be true, but you have thangs to say, too, hon. As a dad you get pretty personal when you write about your Jackson. How does that make you feel?

    JH — [Shrugs] It stings. Every time I do it, it stings. Because whenever I put myself out there like that, I start to think about the whole thing more. All that Jack is missing out on. All he might miss out on.

    Spaghetti-Straps Grandma — Is that why you haven’t written for nearly four months?

    JH — I don’t know. Yeah, maybe. But… It’s just… When I write about autism, I’m really not writing about autism. I’m writing about my son, and our life with him. I haven’t tried to give advice or anything. I just try to tell our story, and people still get…

    Spaghetti-Straps Grandma — What? Pissed off?

    JH — Yes. Thank you. That’s what drives me crazy about this subject. There’s so much bickering, it’s unreal! I thought we were all on the same team here! I once implied that dealing with Jack’s hard times was like suffering, and I was mobbed by an angry Facebook group who said I had insulted them. Why? Because a doctor told them that they sit under the same metaphorical umbrella as the one my son sits under.

    Sweater Guy — The Autism Spectrum.

    JH — Yeah. And for the record, I think it’s a stupid method of classification that has to change. Seriously, it’s way too broad. My son doesn’t speak, doesn’t stay close to us, he has no fear of moving vehicles, and he may never be able to groom himself let alone live an independent, adult life. If people can offer intricate, verbose arguments about why they are the same as he is, they have proved my point, and I have nothing to say. It’s apples to oranges. I would give anything for Jack to be able to speak and reason like that. To have passion for something besides the shelf of Bush’s Beans at Safeway.

    Spaghetti-Straps Grandma — We hear you.

    JH — No, I don’t think you do. Because you’re telling me to keep writing, and I’m trying to tell you I don’t want to write about autism. I am sick of the labels and all the yelling about them. I am sick of the gotcha posts and endless vaccine debates and all the political stuff that goes with it. Don’t get me wrong, I’m thankful for advocates, but I don’t want to be one. Can’t I just leave autism out of it? Can’t I just write about my son, who mysteriously had his speech stolen from him? Most of his relational capacities, stolen from him? His future… stolen–

    Sweater Guy — NO! You don’t know that! Don’t go there! Anything could happen.

    Spaghetti-Straps Grandma — You’re a pastor, aren’t you? Don’t you believe that God could intervene?

    JH — Well, theoretically, yeah.

    Captain Mustache — And lots of kids have breakthroughs later on, bro. There are tons of examples.

    Hair-in-Buns Lady — What about the therapies that haven’t even been developed yet?

    (Silence…)

    JH — I know. You guys are right. And I’m not giving up. But I have to write about other stuff.

    Sweater Guy — You have already. Lots of times, even on this blog. You can write whatever you want. It’s your blog. Your story.

    (Silence…)

    Sweater Guy — But Jason? You won’t be able stop writing about autism. This journey is in your bones now. Your son is too deep inside you.

    JH [Nods] — I know.

    [Stands up slowly and walks to the door. Stops. Turns around.]

    JH — Jack ran off in May, you know. Freaked us out. He was trying to get to our old house. We found him four blocks up the road, on the sidewalk. Not the street. The sidewalk.
    That counts for something, doesn’t it…

    [Smiles. Exits.]

    “Jesus, Autism, and Why I Still Believe”

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    I’m guest posting today at a terrific blog called “Find My Eyes.” The author is a fellow autism dad, and he’s a great guy. This month, he’s been featuring a different guest post by someone in the autism community. When I offered to take a day, he asked me to write about my faith, and how it works with my family situation. This is what I sent him:

    Jesus, Autism, and Why I Still Believe

    The Christian faith is a lousy force field. Some of us think we can hide inside of it like it’s a super sleek Jesus bubble that locks in the happy times and repels sadness. We think it will keep the lights glowing and the fires crackling inside our little Thomas Kinkade lives, and nothing can breach it. We teach our kids to sing, “I’m inside, outside, upside, downside happy all the time” since we found Jesus. And if they grow up with a shred of motivation, they might just sue us for religious malpractice, because it’s a lie. We are living neck deep in the stink of life just like everyone else.

    Oh, we try to deny it. When someone asks us how we’re doing in church, we have a script for that:

    “I’m fine, thanks!”

    Because we’re all fine. Everything’s great, because we have Jesus, and we’re just… so… great.

    Read more at Find My Eyes.

    Our Kids Need THIS More than Autism Awareness

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    “1 in 50.”

    That’s the new statistic that was trumpeted from the rooftops just a few weeks ago. One school-age child in fifty is on the autism spectrum.

    Is that an inflated statistic? Yep.
    Is there over-diagnosis? Sure.
    Was it a poorly-conducted, only quasi-professional survey? Indeed. Fellow autism dad Stuart Duncan has a great analysis here.

    And yet, the very fact that so many people are ready to believe it is, in itself, significant. After all, no stat sounds far-fetched if you “know somebody.” And these days, in my experience, almost everyone knows at least one child with autism.

    It will take years for the real statistics to come to the surface. The hype will die down, and one day, everyone will be able to agree not only on the numbers, but on an actual definition and cause. Personally, I suspect the blanket “autism spectrum” will be completely re-imagined and divided with better descriptions and far more specificity.

    But for now, 1 in 50 does mean something. It means that we need to be ready, no matter what sphere of influence we swim in, to embrace more of these kids. Ready to withhold judgment, to accept their quirks, to help out, and to adapt in ways we never had to think about before. In Christian circles, we have a word for this kind of thing, and it’s not awareness. It’s grace.

    Last month, my son interrupted our church service. We have a special classroom for kids on the spectrum, but they come out while the worship band is playing. They like it. As one of the pastors, I sit on the front row, and on this Sunday, Jack saw me and bolted through the aisles. I didn’t even see him because I had my eyes closed. But when I heard a commotion and opened them, I saw a bunch of smiles. A mom had snatched him up in her arms, grinning ear to ear. Half the congregation saw it, apparently, and they were smiling too.

    That, friends, is what I am talking about. That is grace.

    We need grace for the boy who interrupts our worship services.
    We need grace for the kid hugging the floor of the frozen food aisle. His mom is doing the best she can.
    We need grace for the chatty little girl in the movie theater. Sitting still and concentrating are harder for her.
    And we, the parents, need grace as we try to figure out how to correct, protect, and train our kids to live with the rest of society. We’re probably doing it differently than you would. I’m sure we’re getting many things wrong. Please, give us grace. We’ve had to throw out our playbooks, here, and the game is very, very complex.

    Being aware of the latest stats isn’t all that important. Not for everyone, anyway. What matters is that you, the business owner, the waitress, the teacher, the mailman… you will meet more of our special children in the days to come. They are different, but not that different. They can feel your warmth. And they could use your patience. Your good humor. Your grace.

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    A Salute to the Siblings of Autism

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    There is so much to say to you all, you fierce soldiers of breakthrough. You grow up in the same house as one they call “special,” and that carries more weight than we understand. It means that your parents’ eyes look past you. That we take it for granted that you are whole even when you are not. It means that you give and give and give. Every big sister shares with her siblings, but most of them don’t give away their entire portion. You do it. Often.

    You watched your brother grow bigger but not older. We had that talk, introducing you to that mysterious word, “autism,” but you already knew something was wrong. When did you figure it out? Was it when you saw other boys trying to play with him? Or when he threw himself on the floor and screamed in the lobby of the bank? I hope it was something like that, and not something we, your parents, did. Because I’m sure you saw the change in us, too. We traded in our laughter for dark clouds and chronic busyness—not just from the doctors’ appointments, but from the other appointments, too. The ones that took our joy and concentration even when we sat next to you on the sofa.

    Since those days of shaking, you have forgiven much. The family’s attention has been fixed on your brother. He absorbs so many resources: concern, affection and especially time. It must hurt sometimes to see so much of your inheritance spent on him. After all, there is only so much attention to go around. You’ve had to settle for out-loud readings in the living room, and the occasional daddy date at the movies. But you treat those consolation prizes like championship trophies.

    The way you act, the dollar theater might as well be Disney Land.

    You’re not perfect, I know. You struggle with all of this, even though you hide it. If there is one thing I fear, it is that you bury it too well. Many in your situation grow up to resent their childhood and their parents for not seeing them. And while I wish there was some way to ensure that this won’t happen, I can at least tell you this:

    We do see you. We see how you buckle your brother’s seat belt on the way to school. We see you tickle him and chase him and laugh with him. We watch you lead him by the hand through the noisy crowds of kids and grown ups. When he pulls away from you, you call him back with care and patience in your voice. You read to him, you cuddle him, and every day, you teach him.

    You teach us, too.

    While we struggle to understand and accept your brother’s condition, you prove again and again that love is infinitely richer than tolerance. For unlike tolerance, love chooses to engage, even when there might be no positive response. Love enters into the uncomfortable, the mysterious, messy places, and says “I love you. Even here.”

    This is what you do so well. You teach the people around you how to love their brothers. We see that. Our friends see that. God sees that. And all of our hearts are bursting with pride.

    Months after I wrote this, my 11 year old daughter Emily penned this essay about her brother. It was for a school assignment, but I published it as a guest post, because, well, it proves everything I have said here. These are amazing kids. -jh

    I Am an Expert on My Son

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    I admit; I don’t know much. I’m new to this autism thing. I’ve done some reading, and I’ve talked to some people who seem to know what’s what, and I’ve talked to others who contradict them.

    To be honest, I don’t know what to believe about vaccines, gut issues, biomedical treatments, or how evil this or that organization might be.

    All I have is my own story. And you have yours.

    But for the life of me, I can’t understand the vitriol hurled over the heads of our children. I really can’t. Whether autism is a thing to be cured or embraced, whether it is caused by chemicals or genes, all of us are trying to figure out which way to go with our kids. If we are talking together, researching, pursuing what we believe is right for our kids, well…shouldn’t that be enough to prove that each of us loves our kids?

    I’m not trying to form a Kumbaya circle. I’m not trying to make everyone get along.

    I’m saying it’s time to honor each other’s story.

    That’s why I write about this issue. I am no expert on autism, and I won’t make experts of any of you. But I am an expert on my son.

    If autism has been a blessing in your life, I honor that. There is much gold to be mined in every situation. I will not try to dissuade you of your story. It is your story.

    My story is different. My son was progressing normally, and then he changed. He retreated inside himself. His words disappeared along with the personality he had developed. Jackson is still, at the age of seven, a phenomenal blessing in my life, and I love him more than I can ever say. But he is not autism. His condition is different than his person. And I’ll be honest: thus far, his condition has not been a blessing. It has caused a good deal of frustration and angst for him, and confusion for us. There is a block in our communication.

    I want that block gone. God help me, but I do.

    Maybe my perspective is wrong. Maybe it will morph in the future, and I will realize that autism really is a joy and a blessing. But thus far, in my family story, it hasn’t been that.

    I hope we will, one day, come to a consensus about these issues in an objective way. I want to be able to agree on the definition and cause of autism at least. Then we might have a better idea on how to move forward.

    But until then, all I have is my story.

    And you have yours.

    My Son has a Reputation

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    Two days ago, Jack got one of those embarrassing bruises on his chin. You know, one of those that makes you scared to take him to the grocery store for fear of being reported to Child Protective Services. It happened at school during recess. He is totally fine, but it looks like someone colored purple marker all over his chin.

    Then this morning, I was walking him to his class. He goes to “regular” class with a personal teacher for the first half-hour, and then to his special autism classroom. In the hallway, an irregular flood of students greeted him.
    Read more

    A Letter to My Autistic Son on His 7th Birthday

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    Dear Jack,

    I’m writing this letter in faith that one day you will be able to read it, understand it, and forgive us for the mistakes we are making with you.

    Tomorrow is your birthday. Seven years ago, I was watching the first quarter of the Super Bowl and your mom’s water broke. I joked that it meant something. That you wanted to come out and watch the Steelers beat the Seahawks. I took it for granted that we would someday watch football games together and practice fade routs in the back yard. Read more

    The Shirt and His Boy

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    jack & tigerThis is my son Jack. He has autism, as some of you know. But chances are, you have never met his favorite shirt, Tiger.

    Tiger got his name from a character in Kung Fu Panda. Technically, it was TigRESS, but that’s unimportant. What matters is that Jack looked down at his striped sleeves one day while watching the movie, said the word “tiger,” and fell in love. He refused to take it off. Read more

    Life Through Wide Angle Lenses

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    lamppostWhenever tragedy strikes, we make statements like “That really puts it in perspective.” And it’s true. Jarring events impose themselves on us, forcing us to remember the treasures we have neglected. Treasures wearing our rings, or wrapped in footy pajamas. And then, when the sadness fades, we revert again to our old patterns, glorifying the trivial over the truly precious.

    Do we need bad news to keep us grateful? Do we need death and sickness to remind us of the beauty of life? Are we that pathetic?

    In a word, yes. As a society, I’m afraid we are. But we don’t have to be. Read more

    Parenting and the Problem of Proverbs

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    Sara and I are fortunate to have a community that seems to “get” the autism thing. That is to say, most people don’t assume we are bad parents when Jack goes limp on the sidewalk, or screeches for Puffins at Safeway. It probably helps that his words are so slurred and his stims so obvious. They can tell something is different. Not all parents are so lucky. Some get the “you-suck-as-a-parent” stink eye, even from family members. Read more

    “Invisible” Autism Families; How the Church can Help

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    My family doesn’t get out much. You might see two or three of us at the grocery store, the school parking lot, or even at the movies. But you would never know that we have five children, because we almost never go out as a family. Restaurants are not worth it, and don’t even get me started on theme parks and state fairs.

    We are like many invisible families with autistic children. We stay home. Read more

    50 First Dates with My Autistic Son

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    Note: This article originally appeared in Prodigal Magazine online in August of 2012.

    Last week, I put on my strict daddy face and stared down my daughter from across the table. “You’re nine years old today. This has gone on far enough. You must STOP growing!”

    She grinned back at me and repeated the word “nine” at least seventy-four times. I slumped into a puddle of self pity and shut my ears.

    It is a game we have played for years. When Jenna turned two, she traded her onesies for princess dresses, and I missed the good ole days. Not long after, the dresses were nixed for cowgirl jeans. Before I knew it, the whole thing spiraled out of control, and now I hardly recognize my little girl. She’s putting feathers in her hair, drinking mochas, writing grown up sounding stories and obsessing over Phil Mickelson (Yes, the golfer. I’m as puzzled by this as you are.)

    So I tell her I want her to stop growing up. But I am lying.

    Because as hard as it is to watch your kids grow older, it is infinitely harder to watch them stay the same age.

    I should know. I have a six year old with Autism.

    Jackson was diagnosed when he was three, but we knew something was wrong for a year before hand. He had been a normal boy, laughing and interacting with his sisters, learning new vocabulary and throwing it in whenever he had the chance.

    Then he hit a wall. I cannot remember exactly when he regressed, but I remember that he stopped exploring. Stopped playing. Stopped looking us in the eyes. Everything he had learned about his world was gone.

    Specialists have worked with him for the past three years. We enrolled him in a school with autism experts. We put him on a special gluten-free, casien-free diet. We bought him an iPad for the special education apps. And we have loved the cheese out of him every day.

    In some ways he has improved. Unlike many autistic children, Jackson is very affectionate and good natured. He actually enjoys being with us–something we could not have said three years ago.

    But in other ways he is still three.

    He does not speak to us, except to ask to go outside, get a snack, or to play with our phones. These are usually two or three word sentences. Some days he remembers his words, but most days, he just pulls our hand to the thing he wants, and we have to remind him what to say.

    “I… want… chips… please…”

    How many times have we taught him that sentence? Hundreds. No exaggeration. He will learn it, and the next day, we have to teach it all over again. I feel like Adam Sandler with Drew Barrymore in 50 First Dates!

    The most frustrating aspect of this is that my wife and I are both skilled teachers. We thrive on boiling down difficult concepts into concrete ideas that are easy to absorb. Our son, for whatever reason, simply cannot absorb language. We’ve thrown everything we have at him, and very little seems to stick. The experts are just as baffled as we are, and there is no answer in sight.

    Early on, the cycle of hope and disappointment nearly sidelined me as a dad. I had to let go of all my visions for the future, to clean the slate and start engaging my son with real love–the kind that is full of patience and empty of any performance requirements.

    In short, I had to learn to love like my Father.

    G.K. Chesterton wrote about God’s child-like ability to exalt in the monotonous. God makes the sun rise, and then, like a little boy being tossed into the air by his father, He says “do it again!” It seems the Creator does not get bored as easily as I do.

    I get tired of the duplicate lessons that teach the same words over and over again. But in moments of more relaxed clarity, I smile to myself. Is it really so bad to have to teach my son to say “I want chips please”? After all, it is short and simple, and unlike more complex petitions with multiple subordinate clauses, it always earns a salty, delicious reward.

    “I want chips please” is a perfectly good sentence, and I look forward to teaching it to my son again tomorrow.

    Can I Love my Son AND Pray for Change?

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    Jackson woke up this morning at 6 with a drum solo. It was pretty awesome. He started by beating his hands on the sliding glass door, waking his sisters from their living room slumber party. I smiled. He really does have great rhythm. Then he turned the microwave into a bass drum. I got up.

    I took his hand and led him to the conga drum next to the TV and said “Dude, this is a drum. Play this.”

    He scrunched up his nose and smiled. Then, he played a masterful hand-drum concerto. It lasted for five seconds. (The glass door is so much more interesting…) Read more

    Fighting Autism with Lame Theology

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    Jack sitting in the barnI just finished reading a great post entitled “THE AUTISM DADDY RELIGOUS MANIFESTO.” The anonymous blogger has a nine year old boy with severe autism–worse than my son’s, whose is formidable enough–and was put off by trite religious platitudes that were supposed to make things better. He is not a believer, but he is honest, and I want to stand next to him in addressing this “comforting” statement to autism parents:

    “God never gives you anything you can’t handle.”

    First of all… really? Are we still using that line? I had hoped it would go out of fashion with TestaMints. Because nobody in the history of pain has ever been healed by religious denial. Ever. Read more

    Finding the Mountain Pass to Narnia

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    (…With apologies to C.S. Lewis)
    I have journeyed many times with the boy called Shasta. His heart was full when he left for Narnia, but things have not turn out like he hoped. Not by a long shot. I especially feel for him after he delivers an urgent message to a foreign king. The king promptly forgets about him, leaving him alone at midnight on a cold mountain road. Shasta moves tepidly in the blackness. Disappointed. Exhausted. Numb.
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    Why No, My Son is Not Rain Man

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    I suppose it all started with Rain Man. Dustin Hoffman was just too awesome. America had never heard much about autism before he demonstrated his uber-genius to moviegoers, and we haven’t been able to forget it since. We learned that autism had an exciting side. It might be a sort mutation that grants mental superpowers. Sure, it comes with some baggage, but did you see what he did at the Black Jack table?

    That was before the autism epidemic. Before the blue ribbons, the World Autism Day, the vaccination debate. We have “awareness” now. Among other things, we have learned that while many savants are autistic, most people with autism are not savants at all.

    But the savant possibility still intrigues us, doesn’t it? The fact that a brain might be hyper-wired for math, music or science at the expense of social skills… that’s pretty cool. So cool, in fact, that we start to look for it even when it is clearly not there. Read more