1. Denial

The world has gone ahead and lost its collective mind. People these days are too damn sensitive.

This is the evolutionary thought that runs through the heads of fathers.

To some degree, we can’t help ourselves. It’s a thought that’s rooted in thousands of years of bearing the responsibility of keeping the pack moving. Problems are things to be solved. Destinations are things to be reached. And so we keep our eyes downrange, beyond the edge of the campfire light to keep the wolves away.

We fathers have important things on our minds.

The general belief that people who lay problems at our feet do so too liberally is a mental model that forms easily in us. It’s not a bad one either. Resilience is a powerfully important lesson. And so is self determination. Nothing makes a father more proud than to watch their child stand on their own two feet, solve their problems and bend the world around them to their will, without any help from dad. It’s a firm principal of fatherhood.

Fatherhood1.0, that is.

Fatherhood2.0 is another story though. In our world, some problems can’t be solved. And some destinations will never be reached. And those two realities scare us to death.

Fathers of special needs children live in two sorts of denial.

The first is that there isn’t any problem at all. If it’s the type of issue that can be denied, like a variable diagnosis or developmental disorders, we don’t listen. We assign concern to over dramatic mothers or relatives that spend too much time reading the horror stories of parenting on Facebook. And so the first type of denial is the easiest. That there’s nothing wrong.

The second is that it’s not our issue to deal with. When we can’t deny the issue any longer or perhaps its the sort that came with the concrete certainty of severity, we find ways to hide from it. Sometimes we run right out. But most of the time, we just hide in our responsibilities as fathers. Someone has to make the money and provide the health insurance. Someone has to make sure the other kids get some attention.

Someone has to find a way to pretend that the life that scares us to death, the one we can’t fix, isn’t ours.

It is though. And when we deny it, we do so at great cost.

Every second we deny the reality of special needs parenting, we put distance between us and people who need our strength. At some point, that distance gets too great. And it all comes crashing down. I’ve seen it over and over and over. Children don’t get the help that could have made a difference. Mothers resent fathers. And eventually the reckoning comes. It always does.

It’s either pain now, or pain later. And the beauty of pain now is that you get to go through it with the others you love. And get on to the healing with them too. Rest assured the train will start moving.

Whether you’re on it, or not.

2. Grief

My wife told me that my son had been diagnosed with Autism over the phone. I was sitting in the abandoned guardhouse on the southern bank of the Euphrates River that served as the HQ for Special Operations Task Force West in Iraq.

It had been three months since I’d seen him.

I knew she was worried about him. He’d stopped talking shortly after I left. The regression happened before that really. I hadn’t noticed though. So when she said she was going to have him tested, I figured it would confirm that he was fine.

I was wrong. And the diagnosis caught me by surprise.

As soon as she said the words, the lights in our building went out. We’d lost our generator and I had to finish the conversation from the other side of the camp.

When it was over, I hung up with my wife sobbing uncontrollably and my family in crisis on the other side of the world.

I could feel it coming. I had to get out of the building and over to the dark side of the base so no one could see me. I made a mad dash past the line of special operators waiting for the phone, past a few lieutenants from my troop and out the door. I made it to the edge of the darkness before the dam gave way.

I began to cry.

As I walked back in the darkness, along the river bank to our side of the camp, I could feel it flowing through me.

Memories of my son’s face. Hopes for his future. The sound of his words. Him running to greet me at the door with a smile when I came home from work–something that stopped happening months ago. I could feel the grief wash over me with every step.

No one could see me. I was alone. In every sense of the word.

In the distance, I could see the campfire the team had made to provide some warmth and light until the generator was back up. By the time I reached them, I’d composed myself. The team was planning a reconnaissance mission that night and I was in charge of reconnaissance. And so I got to work.

The sum total of grieving I had done was a lonely walk in the darkness along the river. I didn’t have time for anything else. And I didn’t know how. And I didn’t really know that my son’s diagnosis was something to grieve.

I returned home from Iraq with a heart full of anger. The heart I needed was one of peace and patience and the sort of tenderness reserved for people whose circumstances alone are hard enough. The distance between where I was and where I needed to be almost destroyed me. And it nearly took my family down with me.

Parents going through the journey of diagnosis of their children are told many things. One of them is that though their children are different, there is nothing wrong with them. Some may even go so far as to say they wouldn’t change a thing about them, if they could. And while there is nothing wrong with them, the reality of the experience needs to be acknowledged.

No one wants their child to have a life long struggle with disability. And if they could have changed it from the start, they would. The space between the reality that could have existed and the one that does represents loss.

A loss that needs to be grieved.

Grief isn’t weakness. Grief is strength. It’s looking the pain of loss squarely in the eye and recognizing the role it’s going to have in your life. It’s taking the time to process it and address it. And it’s doing the work to make sure you’ve got yourself back together for your family.

The road special needs fathers travel isn’t for the fainthearted. It’s messy business. And I can tell you from first hand failures, if you don’t prepare for it, you’ve got no shot.

Find the time to grieve. And if you don’t know how, ask someone who does.

3. Roles

“A woman’s place is in the home. “

“Men are the head of the household. “

“Gender isn’t real, it’s simply a social construct developed by a patriarchal society to divide and subjugate.”

These are some positions a cursory scroll of social media today will reveal along the arc of the 21st century gender roles debate. And while sometimes it doesn’t seem like there are any up sides to the special needs parenting journey, there are. My favorite one is that I get to sidestep this discussion all together.

It’s not that I don’t have an opinion. I just live in a world where no one cares.

Parenting a special needs child is a full time job on its own. Sometimes, depending on the severity of the condition, it’s more than one person’s full time job. And it doesn’t stop when they get to all-day kindergarten. Which means that if your family has anything else it needs to spend time on–work, other children, running a household…eating– you’re already below the resource water line and it’s time for a different sort of roles discussion.

In your head, when you started this whole fathering thing, having your role may have meant that men do some things and women do others. And maybe that’s still true in your house. But there’s more in a special needs household. In our world, knowing your role is being clear about what your family can count on from you. And then being flexible enough to respond to the reality that often, you’re going to have to do more. Sometimes much more.

There’s no easy way to say it. Buckle up. You’re in for a whole lot of work. And none of it is optional.

In the tech world that I work in, we often speak of what’s called a “lean start-up mentality”. New companies don’t have an abundance of resources. Which makes sense because they don’t make any money yet. Like special needs families, they start the day below the waterline too.

The smart new companies understand that their biggest risk to success is not having the resources to make a fully baked product that the market doesn’t really want and survive long enough to just go make another. So the pattern of resourcing they use is to move quickly to get some version of what they’re doing, a minimum viable product (MVP), out to the market. Then they use agile resourcing processes to adapt it to what the market wants. And when that adaptation comes, the members of the team need to flexible enough in their roles to respond.

Refusing to make slightly more blue widgets because you’re the type of person that makes slightly less blue widgets gets you voted off the island.

And so does not leaving a little early to pick your other kid up from school because the other one has a medical appointment. Yes your job is important. And yes it funds everything and provides the health insurance. But nobody cares. That appointment has to happen. And that other kid has to get home from school.

So figure it out. Yes, it’s hard. Important things usually are.

Every day of life as a special needs father is a minimum viable product. We get out the door and on our way with barely any margin. And that means that I often have to pivot and adjust my role.

May as well go ahead and get comfortable with it now.

4. Faith

In the early days of our journey, the months after our son’s diagnosis and my return from my last deployment to Iraq, things were unimaginably difficult. He wouldn’t sleep. Whatever devolution and regression that was happening with him drove an aversion to staying still long enough to fall asleep.

I would lie in his little bed with him, holding on to him as he kicked and screamed like he was lit on fire. Eventually, he would wear himself out and drift off. Sometimes it took most of the night. Sometimes just hours.

There was a night, in the depths of it, at the point of exhaustion, I surrendered. I let go and lay there next to him and let the emotion run out of me. For the first time in my life, I prayed.

It was a simple, honest prayer in the darkness. I just wanted it to stop. I had nothing left.

When I was done, he was asleep. And I drifted off shortly after feeling a sense of calm I hadn’t felt in a long time.

There was no miracle. The next night was just as bad. And so was the next. And many after. But when I reached my breaking point, I would pray. And I would focus what positive energy I had in turning over this burden to a higher power. And it made things easier.

It didn’t make the hard things go away. It made me better within them. The simple act of putting my mental energy into a higher power had that effect. And so began my journey of faith; as a man in my 30’s who believed his whole life that he was too smart to be duped by that sucker’s game.

A decade later, my faith is central to my life.

I asked BJ Miller of Zen Hospice about the advice he gave to the caretakers of long terminally ill loved ones. It occurred to me that much of the emotional pattern I was experiencing with my son was similar to what my family went through with my mother’s 3 yr battle with ALS.

He told me that one of the central enablers of sustainment for caretakers was the ability to see themselves in the suffering and need of others. And to see themselves in the care they gave as a part.

It’s not easy to do as the months and years drag on. It takes an adjustment of eye level. One needs to step back and see a broader picture and view themselves as a part of something bigger than they are. Bigger than their own pain. Bigger than the moment of hardship they’re in.

The critical shift is to move yourself out of the center of the problem, the unfairness of it all, and into the care being provided. And that really only works if you’ve got somewhere else From which to see the problem.

The central message of my faith as a Christian is simply put, to put God at the center of your life. And that the application of doing that is through loving others. The central message of many faiths is some version of that which enables a similar activity. And so for many special needs fathers, faith is a critical enabler of strength.

What my family lives through is unfair. It’s unfair to my child. It’s unfair to my family. It’s unfair to me. Over time, focus on that unfairness turns healthy and honest sadness to bitterness. And that bitterness erodes the soul.

Faith breaks that cycle. Somehow. Some way. It just does. It’s written into our source code.

I don’t know how anyone avoids it without some connection to a higher power. And I don’t know how to do that any way than some form of faith.

5. Mindset

I sat down a little while back for a talk with friend and retired Navy SEAL Andy Stumpf on his podcast Cleared Hot. We talked a bit about the journey of parenting and our experiences in the service. Something he told me has rattled around a bit for a few years now.

When he was an instructor at BUDS (Basic Underwater Demolition School) the legendary SEAL indoctrination training, his job was to make it as difficult for candidates to make it through the program as possible. And the most effective way he found was to get them to expand their mental horizons during difficult evolutions; to help them see what they were going through as something that lasted far into the future.

It wasn’t just this thing. It was that this thing would last all night. It wasn’t just tonight…it was hell week. And it wasn’t just hell week. They had you for months.

One can’t stack the burdens of the future neatly and carry them through the difficulties of the present. They weigh too much. And we collapse under the strain.

We quit.

The key in specific situations of strain is to make your horizon as small as possible. To see the moment as a moment, and not a small part of a grander struggle.

It’s not easy. It takes practice. But if you’re on the journey of special needs parenting, you better get used to it.

Lying in the darkness with my son on a particularly difficult night, trying to get him through one of his fits that keep him from sleeping, the key is for me to stay calm. And for him to match that calmness and eventually settle himself. Though it doesn’t happen that often any more, it used to. And it could take hours. And there’s a thought that I know breaks me down.

This is my life. This is it. I’m going to be doing this for 50 years. Lying here in the darkness for hours, every night.

Like water seeking into the cracks in a rock, that thought breaks me.

I’ve stacked the problems of the next 50 years on top of me. And I collapse.

At it’s core, when it comes to special needs parenting, or anything really, the thought is a false one. Seasons of struggle are rarely permanent. When they are, we find ways to adjust and so their impact on us isn’t permanent. But while we’re going through them, they feel that way.

If you buy into them, this life slowly breaks you down. And you quit, evolution by evolution. And then all together.

You can’t carry the thoughts of future pain into your present. They’re just too heavy.

So just put them down.

6. Shame

My son has done embarrassing things in public. They’re so embarrassing, they’re not really worth bringing up. For the sake of the point I’d like to make, you can just imagine whatever cute but embarrassing thing any of your kids have done as toddlers, then project that to a seventh grader.

It’s happened. And it will happen again.

If you spend enough time around special needs families, you see the pattern. Out in public, someone’s kid or adult child, has a meltdown. The people around them react predictably. First they are startled. Then they’re concerned that something is wrong. Then they realize there is a special needs situation and then they all do the same thing.

They look to the caretaker for cues on how to feel about the whole thing.

Dad’s, here’s where it either goes really right. Or really wrong. And which way it goes, depends on two things.

The first is how we deal with our control issues. We dads like to be in control of things. We like to manage our jobs and our families. We like to believe that we can stop things we don’t want to have happen from happening.

Sometimes, we’re right. We can.

What our special needs children do when we’re in public, is not one of them.

And so the first thing we need to remember is that it is neither in our power, nor a reflection of our effectiveness as a father to stop these things sometimes. So go ahead and put down that pack. Because the only thing we can control in these situations, and in any situation really, is how we react.

Which brings me to the second thing. It’s a lesson I learned in small unit leadership as a Naval Officer working in special operations.

When something goes horribly wrong, act like you expected it. And respond deliberately but with confidence that you’ll be able to solve the problem.

In my old life, that confidence came from the fact that I led teams of elite operators with the best training and support in the world. And we could work our way out of just about anything. In my life as a special needs father, that confidence comes from the fact that I’m a dad. And this is my boy. And whatever he just did is certainly not bigger than my ability to respond to it.

So when my son decides to stick his hand in the drink of the stranger sitting in front of us at the ballpark to dig out some ice, and I see the surprise and anger starting to well up in that older gentleman, it’s a pretty easy drill.

I calmly pull my son away. Smile at the man and apologize. Maybe say something like, “well I guess we’re all friends now” and then offer to buy him a new drink.

I’ve never seen it go wrong. And I’ve never seen anyone respond with anything other than appreciation and even an apology for getting angry if they did. Because you’ve modeled to them, how to behave around your child.

Five minutes later, no one remembers it ever happened. No one cares. And no one’s embarrassed.

As is true with most things, people need to be shown how to act and what to expect around special needs kids. And who better to lead them than the merry band of steely eyed leaders that we special needs fathers are.

7. Peace

One of the great disruptions of our lives is the arrival of our children. It’s glorious and fulfilling and all the wonderful things people say it is.

But it’s a disruption.

And for many fathers that disruption finds us horribly unprepared.

Many of us pictured ourselves as fathers. We may have assumed that whatever journey we would be on, would include a family and children of our own. But few of us spent much energy picturing ourselves in the throes of fatherhood.

No sleep. No free time. No control.

The one great determinant on whether we make it through the ordeal in tact is whether we come to a reckoning with our idea of peace.

Whether we find it. Or we don’t.

In this regard, special needs fatherhood and typical fatherhood aren’t much different. As with most things, the aspect of special needs applies the potentiality of permanency. Our children may never leave. And so the importance of this message is not different.

It’s just more so.

If we view the peace that we seek in life to be separate from what we experinece in our journey of parenthood, we will be searching for a long time. And we’ll throw ourselves on the mercy of the forces of life that come in the absence of peace.

Someday may never come. And so we’ve got to get down to the work of finding peace where we are.

This isn’t to say we all should simply transform our own purpose and identity into parenting. That’s not what it means to be an effective parent. We are our own selves. Separate from our children. And refusing to acknowledge that ends just as poorly as living adrift with no sense of peace.

But if you can’t find peace in parenting, and more acutely special needs parenting, life gets hard. And not just for you. For everyone around you.

There’s no magic bullet. No mental trick. Just a simple acknowledgement that peace is not quiet. And it’s found where you make it.

There’s a great depiction of this in an explanation Norwegian writer Karl Ove Knausgaard gives in his description of how he writes. Knausgaard is a deep, serious Scandinavian writer with the sort of temperament you would expect from a deep and serious Scandinavian writer.

He speaks about the idea of artists and how they struggle to maintain both art and family. In a sense, the struggle to be at peace splitting themselves between art and parenting. And that the reality is, there is no split.

“I’ve been kind of confronted with that as a writer, and I think everyone does because writing is so time consuming and so demanding. When I got children, I had this idea that writing was a solitary thing. I could go out to small islands in the sea. I could go to lighthouses, live there, try to be completely solitary and alone. When I got children, that was an obstruction for my writing, I thought.

But it wasn’t. It was the other way around. I’ve never written as much as I have after I got the children, after I started to write at home, after I kind of established writing in the middle of life. It was crawling with life everywhere. And what happened was that writing became less important. It became less precious. It became more ordinary. It became less religious or less sacred.

It became something ordinary, and that was incredibly important for me because that was eventually where I wanted to go. ”

Peace isn’t quiet. And the first step to finding it within the craziness that is special needs parenting is to join the madness that is “crawling with life everywhere” around you.

8. Guilt

I was sitting in our group circle, surrounded by other men on the special needs parenting journey when our facilitator made an observation.

“Y’all are absolutely wrecked with guilt. I hadn’t expected that.”

She was right.

Most people outside the special needs parenting journey see us from the outside in, as people dealing with immense unfairness and hardship. We’re victims of circumstance looking up at a lifetime of difficulty. We’re people to feel sorry for.

Most of the father’s I spend time with on the journey don’t spend much time feeling sorry for ourselves though.

Instead, we spend most of the time crushed by guilt.

After my son’s diagnosis, and after I returned home from Iraq, where I was serving when we received it, I eventually had to go back downrange. One night, my wife dropped me off in the parking lot behind SEAL Team ONE, where a van and a few junior officers deploying late to join team were waiting. The image of her rolling up the window after I’d leaned in to kiss her is burned into my head. She looked at me. Then she turned her eyes to the road, took a deep breath and drove off into the night.

I left her with a four year old, a nine month old and a three year old that had just been diagnosed with autism. Who wasn’t sleeping. Who couldn’t be left alone for more than a few seconds.

I wouldn’t be home for months.

The guilt I felt, and still feel today, is a part of my life.

In reality, my re-deployment to Iraq was just an extreme case of what many special needs fathers endure every day. When we wander out the door to go to work or to take a business trip or heaven forbid, take a few hours to enjoy ourselves with friends, the guilt of the load we’ve left behind for others to carry is crushing.

The most common complaint that we hear from special needs mothers is that their partners don’t support them enough. The second is that their partners won’t ever take any time to care for or enjoy themselves. And that they’re living with someone miserable as a result.

The culprit for the first complaint is usually denial. The culprit for the second is guilt. Which means that somewhere between acceptance and resilience is dealing with the mountain of guilt you’re living under.

Step one, is being honest with yourself about how present you are in your family’s life. If you can answer that question honestly and live with the answer, then the second step is asking your spouse or partner to be clear and honest about their needs for support. And then meeting them.

If you’ve done both of those things, the only thing left to do, is put down the pack.

The guilt that erodes the soul of special needs fathers is a brutally toxic force in the dynamic of special needs families. The longer you carry it around, the harder it is to shake.

9. Hope

I have this recurring dream that my son walks into my room, stops a few steps inside the doorway and starts talking to me. I don’t ever remember what he says. But he’s talking. We’re having a conversation. And then it’s over.

Just like that.

I don’t have it often. But every once in a while it wanders into my life. I know why. I want to talk with my son. Not to him. Or at him. I want to talk with him.

I want to know the sharp edges and soft details of his mind. I want to know what he loves and what he just likes or what makes him feel sad or happy or what he finds ironic.

But I can’t.

Somewhere, there’s a flicker of hope that one day I will though. And that flicker, is good.

Hope, no matter what anyone tells you, is good. It’s not dangerous. It’s not a double edged sword. It’s not something for someone else whose life has not been unfairly cast into the hard and often thankless journey of special needs parenting.

Hope is human. Hope is necessary. Hope is good.

It springs eternal.

Hope says that somewhere things are better than the pain I feel. And one day I’ll get there. That’s all.

There are two sides to the hope coin that we too often see with parents on the special needs journey.

The first is that when hope isn’t hope, it’s control. Our child has a disability. We want that disability to go away. Sometimes that outcome is within our control. Sometimes it isn’t. The reality is, most of the time, we don’t really know what’s in our control. And so we run into uncomfortable ambiguity.

What we owe our children is to do what we can with what we have to give them their best shot. That’s all. The slope gets slippery when life becomes about the cure though. Because whether it comes or not, is not in our control. And insisting that it is, is not hope. It’s the desire to control.

If there’s one cosmic reality of life that special needs parenting teaches us, is that we are not in control. Forget that lesson at your own risk.

The second side of the coin is when we give up on hope and claim we’re just being realistic. We wave at opportunities to push our families outside our comfort zone or to take on new treatments or therapies that may make an impact. But we focus on the hard reality that many times, these things turn out poorly. And we waste time, resources and emotional capital.

This is particularly hard for dads.

There was a time when the biggest fight my wife and I had was because we couldn’t get family pictures taken without immense drama. Be realistic I said. We’re not the sort of family that can do these things.

Yet we did them. Her hope was stronger than my doubt. And in this area, we grew. No shortage of family pictures here.

Even in our clearest moments, none of us really know what realistic even means. Mostly it means stopping trying the hard things. And eventually closing in on yourself.

Hope is the force that keeps our families from collapsing in on the great singularity that is our children’s disability. And the hope we need is a simple one.

That tomorrow may be better than today.

10. Gratitude

I was gone on Thanksgiving during my last deployment to Iraq. I remember it clearly. It was ten years ago this week.

There’s something exceptionally miserable about Thanksgiving over there. It’s a holiday built around gathering together with family to be grateful for what you have. You’re not with your family there though. And most of the time of you’re engaged in the mental gymnastics of keeping your mind off what you don’t have.

Happy Fucking Thanksgiving.

If you’re lucky someone gives enough of a rip to try to cook something. That tour, we had a barrel-chested mechanic from the deep south who fancied himself a chef. And so he took to the task to preparing the Thanksgiving feast in earnest. At least we had that.

I imagine it was pretty good.

I have to imagine because I didn’t eat it. I was locked in my trailer in the dark.

Two days earlier my wife told me our son had been diagnosed autistic. I wasn’t really in the mood for a feast. I didn’t want to feel good. I didn’t want to feel anything other than pain and hate. I wanted to hunt insurgents and then lock myself in the dark to boil in quiet anger.

Gratitude was the last thing on my mind. And it would be for tragically long.

Too long.

There’s something in the human source code that responds to intentional thanks. When we recognize what’s positive in our lives, no matter how small, there’s an eye level change. And so the exercise of doing it, is something special needs fathers need to make time to do.

What’s not great about our journey is in our face every day. What is, sometimes takes work to notice. But if we don’t, we’ve got no shot.

My time in the darkness in Iraq was metaphorical. Outside my door was a family waiting for me to join them. Inside was pain and bitterness. I chose pain. It was the easy path. Opening the door and turning toward the light was too hard.

Pain plus time equals bitterness though. And once that bitterness sets in, there’s only one cure.

Gratitude.

In the physics of the human spirit gratitude and bitterness can’t occupy the same space at the same time. And so the exercise of giving thanks, breaks the cycle. In my darkest moments, I turn to irrational, uncompromising thanks.

Special needs fathers, here me now. It’s the only shot you have.

Grab the dirt beneath your feet. Breathe the air around you. Catch the light that shines off of everything you see. And realize the infinite space and time it all had to travel to be here, for you to experience.

Realize the millions of ways the matter that is you could have been organized in order to not be you. In order to not be your child.

Marvel in their smile. Hold their laughs in the front of your mind.

Acknowledge the unlikelihood of existence.

And then realize that perhaps the deal you’ve been dealt, isn’t so bad.

And give thanks.

In our worst moments, these miracle truths maintain.

Finding a way to hold on to them is one of the great secrets of life for special needs fathers.

And for anyone really.