special needs parenting

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 I walked back from the phone tent in darkness along the river bank, I could feel it flowing through me. The dam burst and I began to cry. 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 a campfire the team had made to provide some warmth and light until a failed generator got back online. By the time I reached them, I’d composed myself. They were planning a reconnaissance mission. Reconnaissance was my thing. So I got to work. The sum total of grieving I had done was a lonely walk in the darkness along the Euphrates. I didn’t have time for anything else. And I didn’t know how. I didn’t really know that my son’s diagnosis was something to grieve. And so 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 facing pain of loss squarely 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.

3. Roles

A cursory scroll of social media today will show you all you need to know of the culture wars raging around gendering or de-gendering of the roles of men and women in society today. And while sometimes it doesn’t seem like there are up sides to the special needs parenting journey, this is one of the times that there are. 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. In the special needs parenting world, there’s only one role. And that’s the role of a special needs parent.

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, we’re already below the resource water line and it’s time for a different sort of roles discussion; one that only cares who is on the team and who isn’t.

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. That’s the deal. I don’t make the rules.

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 may 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 parent 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.

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; back to Iraq. 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 toxic force in the dynamic of special needs families. The longer you carry it around, the harder it is to shake.

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.

12. Marriage

Marriage in a special needs family is many things. Easy is not one of them.

Around here, we do a passable job at keeping it together in front of other people. We’re awesome on social media. Out in public or at parties or other social events we’re a model couple. We’re helpful, patient and affectionate. It’s not an act. It’s real. But we, like everyone else, tend to signal to the world the best versions of ourselves. Our marriage is no different. We’re a special needs family after all. And it gets ugly sometimes.

The honest truth is that I let my wife down every day. And she does me. We fight. We blame. We keep score. We fail under the same stresses that anyone else does. The difference for us, and other special needs families, is that we’re nearly always under duress. Someone is always tired. Someone is always on their last nerve. If one of us isn’t, we’re pointing out that the other is. We’ve had fights over how loudly we’re unloading the dishwasher. Or how we ought to have known which drawer our son was more likely to get into weeks later when we put things that he ought not have in there. We get it wrong so miserably and so often it’s a wonder we even get to do it anymore. Marriage in our world is hard. It’s too hard. Our life is too damn hard to get marriage right. And when we dig deep and put our last ounces of energy into trying to get it right, it’s often still not enough. It’s exhausting. Emotionally. Physically. Spiritually.We’re still here though. And one word is sufficient to explain why.

Grace.

Grace to give the other one the benefit of the doubt. Grace to forgive quickly. Grace to ignore the bad and celebrate the good. Grace to let the other one know we know it’s hard. And we’re in it together. We’re still here because we go to bed every night knowing that when the sun comes up tomorrow, the only two people on this crazy planet that is our special needs family, is us. Others may visit. But no one else stays. It’s just her. And me. She’s the only person in the world who knows how hard it is to be us. She was on the other end of the phone when the journey started. She’s the only one who’s been on the same journey since. We’ve wandered in the dark together. And we’ve both had times when the only light we had to turn to was each other. And in my book that’s worth something. I’m in debt to her. And she to me. And we pay it off to each other in grace; a lifetime of it.

It doesn’t take much to start to listen to the enemy in any marriage. We rest our pain and dissatisfaction in ourselves on the closest flat surface; our marriage. Grace in the face of stress is the only shot we have. 

13. Anger

A few weeks ago I came downstairs to find my son chewing on my newly purchased Apple Airpods. He had destroyed them. I didn’t leave them out. I put them in their charging case in a drawer. He found them though. Then he pulled them out and ate them. I lost my temper.

I’m not prone to violence. I can’t remember any time in my life where I’ve gotten so angry I’ve had to put my hands on someone. Anger for me is mostly about yelling and swearing. I’m a big loud person. And I’ve got a bit of resting “I’m going to punch you” face. So when dad flies off the handle around here, it’s not really great for anyone. So I try not to do it. I try really hard. I’m a work in progress. But aren’t we all.

There are three helpful thoughts that help me fail less often.

1-Being angry and behaving angrily aren’t the same thing. Never getting angry as a special needs parent is a nonsensical goal. Anyone that tells you it isn’t is selling something. If you pay $200 for magical Airpods, and they make your life more enjoyable and then your 12 year old who is big enough and smart enough to find them but has a compulsion for eating most things he can put in his mouth and chew, feeling angry is reasonable. It’s human. And it’s not particularly healthy to not acknowledge it. How you behave when angry is a choice. And what makes us grown human men and not animals is the delta between how we could behave and how we do.

2-We are men. Our wives and children are not. We are relatively big and scary. When we fly off the handle, the blast radius is substantial. This consequence is nearly invisible to us. It is not to our kids. It’s especially not to our special needs kids who often struggle with context and nuance and therefore don’t get that we aren’t necessarily mad at them, going to hurt them, or stuck in a raving state forever. The toll we exact on our families with anger is steep.

3-Anger is mostly about expectations. And expectations are a choice. Though it does happen, I rarely lose my temper with my special needs son Aidan. I lose it hourly with my other two kids. The difference is the tell. I don’t quite have my expectations dialed in right with them. With Aidan, I know anything is in play. Expectations are minimal. (I ought to be allowed to have Airpods though dammit) It doesn’t mean I don’t hold him accountable or push for him to improve. It just means that when he doesn’t, that was already priced into the market. And I just roll with it. Recognizing that our triggers are related to how we thought something was going to go helps us set mental markers in advance.

The best one I start with is the one that reminds us that as parents, we control much less than we think. Another great one is to acknowledge, intentionally, that our kids are not extensions or reflections of anyone but themselves. It’s our reactions that are our own.We’re human. We get angry. Behaving less angrily less often is the goal.

Nothing works better than an apology when we blow up. Because anger isn’t necessarily something to apologize for. Behaving like a lunatic when you are, is.

14. Time

In any enterprise, there’s at least one singular scarce resource; that one thing on which all depends but is limited in its availability. Successful enterprises identify that scarce resource and manage it effectively. Sometimes understanding which resource it is, isn’t obvious. Money problems are often time problems in disguise. Time problems are often lurking talent gaps.

Groups that fail to recognize what their true scarcity is fail spectacularly in ways that often puzzle those responsible for their success as they invest more and more in things that don’t matter and fail to protect that which is critical and can’t be replaced. In special needs parenting, that resource is time. Nothing else is close. It may feel like we don’t have the money or support or the expertise to do what we need to do to get through the day. And all of that may be true. But all of those things can be gained or replaced. What cannot be accounted for with any measure is that we don’t have enough time.

As a mission commander in special operations, the one thing that never really wandered too far from my situational awareness was time. There were always the variables of danger, enemy and friendly forces, communications, food, water, ammunition and a near endless list of other things we needed to account for. And each one represented an enticing rabbit hole to disappear down. The clock though, was always running. We needed to be somewhere at some time. And every decision I made required some calculation of a trade off of time…rabbit holes be damned. Nothing from my past makes me more equipped to deal with the day as a special needs parent than how that life taught me to treat time.

There is no mainstream lifestyle that accounts for having a child that can’t be left alone for the next fifty years. The child will always represent a resource draw we weren’t designed to account for, for more than a handful of years. That long dwell problem means that we can’t make short term trade offs to buy us time in the long run. So we are underwater, perpetually so. Time is the thing that runs out and never comes back. There’s no magic trick that will get you more time. No one secret I can tell you other than to treat your time wisely. And to have a sense that what you’re doing needs to be worth it. Rabbit holes are luxuries we don’t have. Waiting on hold for an hour for a $10 refund probably isn’t something you can do anymore. Driving across the county for the cheapest gas isn’t either.

Spend a moment on the literal meaning of the term “waste of time”. And remember that relaxation, recreation and self care are not optional activities. Make the decisions you need to, to avoid waste. Once you find the time sucks in your life you can do without, you’ll never go back. The urgency we all experience as special needs parents, in this case, can be put to good use.

You can get more of just about anything you’ve ever lost. Except time. No amount of money ever bought a second of time. Billionaire, playboy, philanthropist, genius Tony Stark said that once. It’s a lesson I relearn everyday.

16. Fear

There’s a family at the end of the bread aisle. The parents are elderly. Their son is about my age…I think. It’s hard to tell their ages really. It’s hard to tell the effects of time from the entropy of a certain sort of life. They snap at each other. They quibble. They’re not too different from any elderly couple who have spent a lifetime together having the same argument in the bread aisle on Sunday evening in the supermarket. There’s a bitterness to it though; a fatigue. They’ve broken off from the outside world. I can see in their three person bubble. But they can’t see out. Their clothes are shabby. Their hair is messy. The son has a three day beard. If you get halfway down the aisle, you can smell him. I don’t know how they get him clean. Or how they groom him. He’s stronger than they are now. He’s got more life than they have. It’s near the end for them. Now, here they are, at the bitter end of a fifty year tether that started one day when they learned that their son was not like other children. There, among the shining floors, blaring fluorescent lights and retail displays is my deepest, darkest fear; what this looks like at the end when at some point, the forces of time and life and special needs parenting have pulled the world down on me.

I’m a young energetic man. And my optimism, faith and hope springs eternal. It pushes back against the singularity of our circumstance. One day it’s going to run out though. And that thought scares me to death. At the bottom of my frustration or anger or destructive behaviors is that fear.

It’s important to name our fears. The real ones. The ones we can’t run from. The one’s that won’t ever go away. When we do, it helps us recognize their place in our lives. They will always be there. They are towering potential realities that have no worldly solution. If they did, they wouldn’t be that sort of fear. We can hide them. We can hide from them. But they always wander back. And each time they do, our reactions are predictable.

Anger. Frustration. Anxiety.

Angry, frustrated, anxious fathers have a blast radius our families can’t hide from either though. And the longer we hide from that which we fear most, the angrier, more frustrated and anxiety ridden we get. I’ve learned the hard way to give my fear a name. To spend time with it. Let it ride in the passenger seat on the journey that is my life. I’ve learned to hold hands with it. If you’ve got any shot in this game, you’ve got to do the same.

Maybe you’re afraid you’ll lose your job and can’t provide. Maybe you’re afraid your wife won’t ever come out of the funk of diagnosis. Maybe you won’t ever be able make your mark in this world because your child just won’t let you. Maybe your child will never live any sort of productive life and will be a draw on those around him every day he spends on this earth. Maybe all of if will happen. And maybe there’s nothing in the world you can do about any of it.

Good.

Now that you’ve met, it’s time to get used to spending time together in the daylight with your faith and the people you love who know them just as well as you. Special needs fathers that run from their fears never get away. They just die tired. And they leave a trail of wreckage in their wake. So give your fear a name. And own it. Until you do, it will only own you.

18. Someday

For most parents, the season of our lives when our children are young looks distinctly different from the rest of our lives. It’s expected. We understand the burden of having young children. We know the time investment that it takes and the limitations of our children’s physical, emotional or temperamental state of being. We adjust accordingly. We don’t take the whirlwind holiday in Europe with toddlers and newborn in tow. We don’t climb Kilimanjaro on maternity leave. The trust we have in the temporary nature of this season is one the the things that gets us through it. And the rewards we reap from the newfound positive experiences of parenthood more than offset it…for most of us at least. But it’s a grind. Even in the easiest cases.

The grand challenge of special needs parenting is best described as an indefinite extension of this acute stage of parenting. For us, this stage doesn’t end when our last child hits kindergarten. Sometimes it doesn’t end at all. So many of us descend into a bunker mentality of crisis, waiting for someday when the heavy shelling has ended to poke our heads out and venture again into the new peace. Tragically, many of us never come out. This is where special needs parenting teaches a universal life lesson:

That there is no guaranteed someday. Not for us.

Whatever limitations our children have may improve in the future. They may not. They may develop others. Cruel uncertainty is one of our only certainties. Another is that the things we want to do, the ones worth doing, will always be some version of hard. There will never be an easy time to do them. The trick to doing them is the same trick to starting anything. To start now…where you are…with what you can… This doesn’t mean we do things we clearly know our families cannot do. That would be stupid. But it does mean we need to start doing the sorts of things that are on the way to our impossible. Push boundaries. Extend yourselves. Don’t listen to the poisonous voice in all of our heads that tells us that the pain in failing is worse than the pain of a life in the darkness of the bunker with the shells raining down on us in relentless perpetuity.

We’ve gone to movies and not made it through the previews. I’ve had trips to Disnelyand that lasted 20 minutes. Once we didn’t even get out of the parking lot. Once, on a cross country flight, when my son had screamed like he was being lit on fire for six straight hours, a doctor onboard asked me if my son needed a sedative. My answer…no…but I could use one…or maybe he should take it himself if it would help….because fuck that guy. I’m at war with the forces of good and evil on a pressurized tube in the stratosphere and the rest of the world is worried about annoying sounds. I can’t help them with that. Not at the risk of never leaving the bunker. Not for the promise of a someday that won’t ever come.

Life is fragile and short. We need to value someday less and today more. Dare to try. Dare to try to do the things that broke your heart when you learned what this life would be like and you feared you’d never do them. Embrace the failure. Celebrate success…and get on with living the one life you and your family have. Because someday is a myth. It never comes. And so much of what’s wrong with the lives we lead happens while we wait for it.