special needs

1. Denial

The belief that the world has gone soft is a thought that forms easily in fathers. 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, wary of the real risks we know exist beyond the edge of the campfire light. We don’t need these new problems. We fathers have important things on our minds. We can’t overreact to every silly thing that wanders by our door.

It’s not a bad way to look at the world. 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.

Fatherhood 1.0 that is.

Fatherhood 2.0 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.

Father’s, hear me now. If your wife or partner or whoever it is that you’re raising your child with tells you that they think something’s wrong with your child, listen. Shutting it out isn’t a sign of strength. It’s cowardice. And I can tell you first hand, it leaves a mark.

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.

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. 

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.