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.

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.

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. Not for anyone really.

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.