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When we Can’t Carry them In Anymore

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Our church’s special needs classroom used to be a safe haven for my autistic son, Jack. It was a respite for him; a twenty-third Psalm reprieve from the throng of kind, caffeinated congregants hoping to win a “good morning” from him, or at least a hi-five. Not anymore. Six months ago, we moved his beloved “Open Heavens Room” to a larger classroom across the hall. Our boy doesn’t like change, and this change pushed all of his OCD panic buttons. It spooked him.

He refuses to step foot in there now, so he sits with the adults through both the singing and the sermon, eyes glued to a visual timer on his mother’s iPhone.

It’s not a bad trade, in one way. Sara and I would prefer our son to join the congregation and be with his peers, but the arrangement has complicated all of our lives. We work at church, but the whole place makes him antsy now. Someone always has to sit with him through the service in case he tries to bolt without warning, or randomly yells “Syndrome’s remote!” from the Incredibles. Both have happened.

When Jack was little, this kind of thing wasn’t a big deal. We would take the same approach as we would with any of our other kids: we would simply pick him up and carry him into the room against his will. Because he would be fine. Kids get over things quickly, right?

Well, maybe, but he is eleven now, and he’s getting stronger from all that sock flapping. He’s almost as tall as his sisters, and his will has only hardened in his growth spurt. It’s no use trying to force him to do anything he doesn’t want to do. More to the point: it is counter-productive.

The “pick him up and make him go in” phase of parenting is supposed to be short.

Small children are too young to understand why they must brush their teeth every night, or why they have to fasten their seat belts, or why they have to go to class. As parents who do understand, we sometimes have to make those decisions for them. They are growing, however, and soon, they will have to choose on their own. We won’t be able to carry them in anymore.

How do we prepare for that eventuality? By ceding control in small increments. We phase out coercive parenting little by little, and begin to lead instead through influence. We begin to regularly offer them choices, and we explain why some choices are inherently better than others. And while we do all of this, we hope and pray that our children’s comprehension will grow apace with their stature.

But there’s the rub. This hasn’t happened with Jack. In many cases, his understanding (as far as we can tell) hasn’t kept up with his limbs. Sometimes he is just being stubborn like any other eleven year old, sometimes he is overstimulated and overwhelmed, but many times, it seems like he truly doesn’t get it.

My boy is growing, and it’s exciting and wonderful and scary and endlessly complicated.

So how do we lead him? Certainly not by authoritarian measures. Coercion is a last resort now. Jack’s will has begun to blossom, and our tactics have necessarily changed. We have had to stop pushing and start leading.

I suppose in this way, my son is not any different than the rest of us. In order to lead him, you have to invest in him. You have to walk beside him. You have to show him you care about him. You have to build trust, and trust-building takes time.

In our current struggle, I am grateful to have friends who live this principle. Isaac and Lori, who often work with Jack on Sunday mornings and Wednesday nights, are playing the long game, opting to guide him gently. They’ve sat with him. They’ve talked with him. They’ve taken walks past the big, scary door to the Open Heavens Room, and have assured him that everything is going to be okay.

This is what real leadership looks like, and it’s beginning to pay off.

Jack is starting to come around now. He even took a couple steps through the door last week. He kept his eyes shut, but he did it. You can see it in Isaac’s video below.

It will take more time, though, and that’s okay. This is our life now. We don’t rush things anymore. The days of causation and coercion are coming to a close. This is the age of coaxing and calling; of hand-holding and shoulder squeezing; of “take a deep breath, son” and, “you can do this, buddy. I know you can.”

And he will. Just wait and see.

(Many thanks to Isaac for the video and for the patience. We are fortunate to have you in our lives.)
Feature photo by Anne Nunn Photographers

A Letter to My Autistic Son on His 9th Birthday

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Dear Jackson,

You turn nine tomorrow, and there is one moment from this past year that I want both of us to remember always. We were at the lake. The one where we can see the mountains up close. Your brothers and sisters were splashing around, soaking in the afternoon, but you weren’t having any of it. You were standing on the shore looking concerned and very dry. This had been your way for the past several months, which was sad because you love the water. Always have. But something had changed.

“What’s the matter buddy?” I asked, not expecting you to answer. You like to keep us guessing, see.

But this time you did answer. You pointed to the water and spat out three panicked words: “Great white shark.” Because you had been watching Wild Kratz, see…

It was a sad, beautiful moment for us all. Sad because we saw you were afraid, and beautiful because you finally gave us the answer to our long-standing riddle.

I picked you up your tense little frame and tiptoed through the shallow water, assuring you that there were no sharks in the lake. With every step, you started to release your breath. To believe me, little by little. To exchange those irrational bits of fear for the pieces of joy they were keeping you from. When that transaction was complete, you spent the afternoon glorying in the lake like a river otter.

This is my story as much as yours.

I have my own irrational bits of fear that have kept me from joy, and those fears are about you.

10689832_10204435416837159_1226580369505442984_nYou see, when a dad discovers that his son has autism, one of the first things he has to learn is to let go of his expectations. And I did. It took me a long time, but I did. I learned to embrace you where you were. To let go of my desire to rush you along in your development. I learned to stop comparing you to the other boys your age, who are playing basketball, reading books, and having heart-level conversations.

I thought that meant I had learned patience. I was wrong. I had simply learned not to hurry. But that is not the same thing as patience.

Let me explain: Last week, I met a family who had a boy like you. An autistic boy who did not use words, but kept to himself and his chosen comfort toys. They were sad, just like I am sometimes, because they wanted relationship with him. But when he was seven or eight, something amazing happened: he started talking. He started relating. He went to school and learned all the same things as the other boys his age. And now, he is a teenager and has a bright future ahead of him.

When I heard their story, I thought of you, of course, and I wondered, “What if Jack were to break out of his box?” And immediately, I felt a panic like you did on the shore of that lake. I tensed up and pointed to the water, yelling: “Hope! Hope!”

What an ugly revelation that was. After all I have learned, I am still afraid to commit to believing in your eventual breakthrough. Hope, to me, is a scary animal with teeth in it.

And that is why I now believe my patience has been false.

A man who waits without any expectation is not being patient. He is simply loitering.

I have been a loitering father. As a result, I have cheated you out of well-deserved praise, and cheated myself out of joy. I have glossed over the very real strides you are making. You are interacting with other people far more and far better than ever before. You have, by and large, stopped injuring yourself. You are learning and deploying new vocabulary to the point that your mother just said to me, “he wouldn’t be classified as non-verbal anymore.” She is right.

And then there’s something else which I confess I never saw coming: you are learning to read.

Last night, you were getting into the van and you dropped a homework paper. I picked it up and motioned to the big black letters at the top. “What does that say, Jack?”

You pointed to each word as you spoke:

“I. Can. See.”

Yes, you can. I want to see, too.

I want to see forward without fear. I want to be the kind of father who not only loves his son through the challenges, but who believes he will overcome them, too. I want to be like the early riser who faces east and waits for the dawn with certitude. I want to anticipate the inevitability of our sunrise–yours and mine alike. In our breakthroughs. And despite my fears, I know this is a good and reasonable hope, because the same God who programed the sun also programmed us with a deep desire for wholeness. And why would He give us such desires unless wholeness was a real thing?

It is coming. Hope is rising.

My son, let me begin anew: You are winning. You are kicking down the doors of your box. I can see it. I couldn’t be more proud of you and all the strides you have made. And this year… this is the year we overcome. Together.

Happy birthday, my boy. I love you.

Dad

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And if you liked this post, check out my book, Aching Joy!

Autism Awareness: What I Want the Church to Know

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Dear Church,

You don’t know me, but I am one of you. I was born in you and raised in you. I did mimes in parks and marinated to the soothing rasps of Chapman and Smitty. And now that I’m mostly grown up, I am one of the guys who sits on the front row and “brings the word” on a Sunday morning.

I have five children, and one has autism. When he was diagnosed, it rocked my world. We couldn’t communicate with him, and I got depressed about it. I withdrew. I got angry.

Five years later, he has made good strides in his communication, and I have grown, too. Granted, I’m still moody, but I’m not depressed anymore, and one of the biggest reasons is because of my brothers and sisters. The church. You.

I wasn’t on staff at the time of Jack’s diagnosis but my church leadership embraced my entire family. They took us in. They let us vent and cry. They listened. They went out of their way to love my son and accommodate us. To let us hurt and to help us heal.

You did this. And I love you for it.

But it went further. The entire church body embraced my boy. One Sunday morning, I was on stage giving the announcements, and he bolted to the front of the sanctuary to see me. I picked him up and let him say hi in the microphone. Nobody was irritated. They were delighted because they, too, are striving to know him. They love him.

You did this. And I love you for it.

I am a gushing fan, because I have personally felt the healing of Christ at your touch. My only regret is that so many others have had such radically different experiences.

In the past year, as I’ve hung around the online autism community, I have found very few others who are discussing autism and the Christian faith. There are many reasons for this, I’m sure, but the biggest one is this: we have not known what to say about the issue, but we’ve still tried to offer solutions, especially when it comes to children. And those solutions have driven people away over time.

Okay, it’s worse than that, actually. I’ve talked to many parents of autistic kids who have been simply uninvited from church fellowship. Their son was loud one service, or he was running through the foyer. So they were told not to come back. These are the exceptions, but make no mistake, they happen. All too often. Can I speculate on a reason?

I think it’s because of our views on parenting.

The fact is, there isn’t very much written directly about parenting in the Bible. I wish there was more. It’s hard to list good parents in the bible, but it’s alarmingly simple to find poor ones, even among the heroes: Jacob, Eli, Saul, David, Solomon, and Hezekiah, to name a few. Maybe it’s because we are so short good examples that we have turned to the book of Proverbs, where sayings such as,“Spare the rod and spoil the child,” become our textbook.

Having kid problems? “Give ’em some discipline,” we tell them, as if it’s enough. Because we know people who don’t discipline their rug rats, and their kids are brats, so that proves it, right?

I use that example for a reason: it has wounded many, many children with autism, and it has confounded their already hurting parents. I’ve talked to them.

This is what I want to say to you, brothers and sisters in Christ:
Autism is not a discipline issue.


It really is not. There are boundaries that will need to be drawn and enforced, but those are secondary.

Autism is primarily a sensory issue. Autistic people see things and hear things and feel things in a much different way than the rest of us. They receive extra “data” from their senses, and they don’t always know how to react. Sometimes their bodies just rebel against sensory overload, and that can be a confusing thing. A disconcerting thing.

But please, don’t assume it’s a character issue.

I prefer a different Proverb to inform my parenting: “Train up the child according to the tenor of his way, and when he is old he will not depart from it.” (Prov 22:6, Darby) In other words, there is not a specific mold for our children to fit. There just isn’t. There’s no perfect playbook. No magic bullets. Every child is different, and it is our job to figure out how best to lead them based on who they are.

This is a proverb for us, the church, as well as for parents. How can we encourage the health and growth of our own if we don’t understand them?

Hear me, friends. I am not bashing. I have seen such beauty in our midst. But I have also seen confusion at these intersections.

The CDC tells us that there are more kids getting autism than ever. They say it’s 1 in 68 now. Whether or not you take those numbers seriously, you need to know that there are many families in your neighborhoods that need the beauty of love that is found in your midst. Some of them are invisible, but you can open your doors to them like we did. Others will work up the courage to visit your services, sitting (or standing) in the back, looking apprehensive when the kids are dismissed to Sunday School. In order to share that love with these families, we must adamantly refuse to assume causes and solutions that we know nothing about.

I know we like things to be simple, and we sometimes panic when they are not.

We try to convince ourselves that the answer is easy. Right in front of us. We’ve got the Bible, see, so we’ve got answers. Nothing to see here, people. Move on!

But today is Autism Awareness day, friends, and we need to be aware of the insufficiency of our advice. We need to go back to our roots and remember that Christ Himself is the Answer. We cannot always think His thoughts, but we can at least be His arms. To welcome. To embrace. To be there for one another.

This is the place I found healing. Not in the abundance of words, but in warmth.

And I love you for it.

Photo from GeekyGlass.com

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. 

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

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.

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