Author: Sean Patrick Hughes

11. Joy

By the time I was 32 years old, I’d spent four years behind the walls at Annapolis, completed three tours in a war zone, moved a dozen times, finished business school, cared for my mother who was dying of ALS and had three children with my wife in three and a half years. I felt like I’d been ground to the nub. And I was ready for the part of life that was supposed to be fun. That’s when my son was diagnosed. Tolstoy was right about families. The happy ones may all be the same. But the unhappy ones are unhappy in their own way.

My family wasn’t unhappy because of any of the laundry list of hard things we’d gone through. My wife was too strong to let it beat her. And my kids were kids; inherently happy. My family was unhappy for a much simpler reason. I was in it. I really only knew one way to get through hard things. I put my head down, grit my teeth and gutted it out. I told myself that one day we’d get through this. That the train would pull into the station. And all would be well. Until then though, I was going to be a miserable son of a bitch. And that’s just the way it was going to be.

I didn’t realize one of the great iron truths about life. There is no station. Just tracks; tracks as far as you’ll ever see. The cold reality of my son’s diagnosis and the increasingly clear and permanent burden of special needs parenting actually helped a bit. My son’s diagnosis destroyed the idea of a station. I had no choice but to come to terms with the uncomfortable truth that that we would never pull in. And that this may never get easy. With that truth came a reckoning. And a lesson about the nature of joy.

For most of my life, I’d mistaken a few things. I thought relaxation came from easy things. I thought peace came from quiet. And I confused joy for fun. With a lot of patience from a wife that never quit on me, friends who knew better from their own hard walks and the towering strength of faith, I learned a few things:

Peace comes from knowing God, or whatever version of higher power applies. Relaxation comes from aligning your internal expectations with your external realities. And joy comes from purpose. For me, that purpose was serving my family. Once you make your peace with all that, you’re pretty hard to beat.

One of the great regrets that I have is what I missed during the years when I faced the hard things in life by keeping my head down and my powder dry. The birth of my kids. The joy seeing my wife for the first time in months. The beauty of the simple things in life. I’ll never get any of it back. So do yourself a favor and start where I ended. I’ve learned the lesson for you. And you get no points for rework.

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.

15. Fatigue

A lifetime ago, I was walking across a field with a gnarly old SEAL senior enlisted on a deployment in some dusty corner of Africa when he turned to me and said something I’ve never forgotten.

“This is the best way to feel when you need to kick in a door. Dead tired. Hollow.”

It sounded strange but I felt exactly like what he said. We’d been up for three days straight. We’d wandered into an uncharted creek trying to find a place to fix one of our boats and stirred up a hornets nest of smugglers. We ended up on a two night chase down the coast until we finally had them cornered. I remember being too damn tired to be scared. Or worried. I just wanted to nail it down and fall asleep in my gear; which I did. It was a warrior’s sleep. Deep. Dreamless.

There’s a funny thing about that kind of fatigue. It doesn’t feel bad. It’s not exactly pleasurable either. It’s something closer to satisfying. There’s something to the mental connection to productivity that allows us to celebrate the suck. That life taught me a thing or two about fatigue. Being a special needs father years later taught it to me all over again.

The only thing that has ever pushed me to the mental brink the way being on a special operations mission did is being right in the middle of a bad spell with my son. When special needs kids get sick, it’s 10X the problem that other kids have. When they have sleep problems, no one sleeps. And sometimes, they just get out of sorts, which can last for days, weeks or even months, no one gets a second of peace. It wears you down to the nub. The secret to holding it together is crossing the mental bridge in your head to seeing the work the way I saw a mission. You have to see yourself in the care you’re providing to them. And to find satisfaction in facing it. If you see it as something just to get through, something tedious or unfair, something you ought not have to do, it will deplete you and erode more than just your physical energy. It will deplete your soul. But if you see at is an opportunity to serve, it has the opposite effect.

It’s the sort of thing you have to say before you believe it. And believe it long before you see it. But once you cross that bridge, you become something close to unconquerable. We are special needs fathers. We do things because they must be done. The world does not care if we are worn out. It does not care if we were up all night and have to make a 7AM deadline at work. The work is there. And we love it. Because we need to. And when it’s done, we’ll drift off into that warrior’s sleep. And wake up to do it all again.

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.

17. Discipline

I don’t know how to discipline your child. No one outside the small group of people that observe him or her on a daily basis does. Anyone telling you otherwise is selling something. The reality for many of us on the special needs parenting journey is that it doesn’t much matter in the classic sense of our children’s intellectually informed decisions and the measured consequences that complete their feedback loops. Discipline when it comes to our kids falls somewhere behind happy, safe and loved. And for many dads that’s a hard pill to swallow.

So, I’ve got good news.

I’m not going to spend any time on the topic of disciplining your children. Because the importance of discipline, in the special needs father’s world, is entirely about us; the dads.

So much of our lives is locked down by mandatory obligations and engagement that there’s a dangerous pattern that manifests in us. In the times when we’re off the chain, we can begin to see the little freedom that we have as an opportunity to self-medicate with stimulus; stimulus that isn’t always constructive.There’s a lie we begin to tell ourselves. It sounds something like this:

This life is hard. And we deal with so many unfair things. We can’t be blamed for doing what we need to do, to get by.

If we tell ourselves that lie for long enough, the behaviors we’ll justify can spiral further and further away from those that align with what’s required of a man with the burden of leading a family with a special-needs child. I’ve had enough heart to heats with men on this journey to know how near mathematical the pattern is. And there’s one thought we all wish we’d anchored down on the instant that lie first popped into our heads.

No one cares about how hard our life is.

If you decide to start down the wrong path, the overwhelming odds are that it will eventually come crashing down around you. And when it does, no one will give you a single ounce of leeway because your life is hard. In fact, it will be the opposite.Your friends don’t know how hard it is. They don’t care.Your kids won’t forgive you because you had the “bum rap” of being their father. Your partner, who is on the same journey as you and now also has a partner that can’t be depended on or trusted, won’t forgive you.

Nobody cares that you were having a tough time when you made the decisions you made that hurt people.

Listen to this message, coming from someone who knows from firsthand experience. There is a world of temptation out there. And the belief that we special needs fathers deserve to wander into it is seductive. So put your guard rails up. Stay away from the dark corners of the internet. Don’t slide into anyone’s DMs. And get help if you have ever or are currently suffering from any sort of addiction.

Get your shit together.

Your family is depending on 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.