autism

The End

 

Our memories are mostly memories of memories. We can trust the big ideas. The details are more suspect.

We pave over the particulars of our past with things from other events or things other people have told us about their experiences of the same event. It’s one of the reasons, besides the fact that people are fantastical liars, that we get caught telling tales so often.

Our past exists in a Gordian Knot of stored data in a biological wet organ just big enough to grow inside our skull. And so over time, all that’s left is the general idea of something that once happened to us. And even then only if we all agree on what that idea was and write it down. So that’s what I’m about to do, lest I forget this one and it vanishes like Roy Batty’s teardrops in rain.

Trust the big idea of this one. The details are post script constructs.

Ten years ago this week, I sat staring at a clip board at my desk in my troop space. On it was a long list of things that needed to get done.

Weapons inventories. Manifest check sheet. Will. Power of Attorney. Classified hard drive storage.

There was a line through each of them already.

The phone in the middle of the desk I shared with my Troop Master Chief rang. He picked it up, muttered a something inaudible and hung up. Then he looked at me. Of all the things I remember that day, it was the look.

We were due over at the North Island Naval Air station with the rest of my troop to get onto a C17 headed for Balad, Iraq in about an hour. But something had happened and we had to head over to the meeting room in SEAL Team ONE. And that something could really only be one thing.

Dan Cnossen, one of the Team’s platoon commanders, was injured in Afghanistan. He was a part of the team that had left the week before with some of my operators and analysts. I knew Dan a bit. Not that well. He lost both legs but survived.

We were about to say goodbye to our families on the tarmac, but the Skipper wanted us to know what happened to Dan. And to remind us that no one says nothing to no one. There was a process underway to let those who need to know, know.

This was the work.

As for Dan, he’s since gone to grad school at Harvard and won two Para-Olympic Gold Medals in the Bi-athlon. It’s true what Ruth said about people you know. If they never quit, they’re damn hard to beat. And there’s clearly no quit in Dan.

I left my wife and three kids on the Tarmac that day. It was the last time I would see my middle son before he was diagnosed with Autism. It was the last time I would see my youngest before he could walk. I slept on top of a conex box in a sleeping bag for the next 15 hours or so before we landed in Iraq.

I felt as bad as I’ve ever felt in my life. For a few minutes and then I buried it.

Those are the details of the day.

The big idea was that it was the end. Whatever I had built myself to be able to do, was done. All that was left was six months to play the game I’d spent the previous 15 years preparing for. And while many, maybe even most of my generation will tell you that the most important time in their lives was when they served, I won’t.

Because the most important time in my life was the ten years since I stopped.

None of us, no matter who we are, can fight forever. And few of us can find a market that fills up our lives talking about what it took to fight. The rest of us need to move on.

I put my family back together. I put myself back together. I found that kid that raised his right hand on the courtyard in Annapolis 20 years earlier who saw that world through bright eyes. Who hadn’t yet buried a lifetime of pain in the desert. Who hadn’t yet clung to countless unsustainable life hacks to numb the pain.

I founded a non-profit with my wife to help families with special needs.

I found a career in an industry that let me build on the experience I had but insisted I grow beyond it.

I found my voice in writing; a few million visits to this site, articles in the Washington Post, Playboy and a dozen other online venues.

I found faith. And in it, I found the strength to walk the next leg of the journey; the journey of a special needs father.

This blog is winding down. I’ve said most of what I need to say about politics in America. It’s not going anywhere. If I need to, I’ll say something here from time to time. But there’s work to be done. There are men out there on the same journey I’m on, in pain. Men who don’t know how to be who they are through the grinding task of special needs parenting.

It’s an unfair task. But I think I can help.

This September I’m launching a blog to provide some words of encouragement, hard lessons learned and a little salt and light to the fathers of special needs children. I know they won’t ask for help. I know they won’t tell people they’re hurting. I don’t need them to. I’ve been there.

And I’m coming to them.

Thank you all so much for the years of following this blog. You are all the reason I wrote. I hope it helped.

And if you’d like to follow my new page, I’ll send one last post with the info when we get it out.

On the Utility of Faith

For those of you who don’t follow the majesty that is @sphughes99 on Twitter…this sort of stuff pops out from time to time…

Thread on the utility of faith.

Most of the intellectual energy around faith and people of faith is focused on the institutions of faith. And it’s pretty negative. Rightly so as the institutions are riddled with bigotry, abuse and hypocrisy. So little else gets said.

Beyond that though, it’s hard to overstate the positive impact faith has on people on a personal level. That people endure the negativity of institutions to organize around their faith is telling.

For me, faith is foundational. And it’s worth unpacking the mechanics of that a bit.

I’m a parent and caretaker of of a special needs child. The grind that involves is consuming. I write this, not coincidentally, at four in the morning, the time he decided to get up today. I’m up with him because he’s not entirely safe without some supervision. He’s 12.

Hence some reflection on the utility of faith.

The grind of this life is consuming. And like all grindingly tough things, hard things with the added aspect of having no end in sight, the notion of unfairness plays a central role in the battle for your state of mind.

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 & honest sadness to bitterness. It’s not unique to special needs parenting. It’s a common cycle because life is hard.

Special needs parenting is just a certain type of hard that makes for an acute illustration. There is difficulty. And there is no way out of it. And there is no end in sight. No end until the end.

In such instances, faith and it’s central role is clear.

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. It’s an intentional frame of mind. And without it, fatigue eventually yields resentment.

And resentment yields the bitterness. And so 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.

It’s easier said than done. The amount of times I’ve patiently whispered “quiet voice” to my son since 4 this morning so he didn’t wake up the rest of the house, eventually starts to draw on me. And so there’s some energy I have to put into seeing myself as an expression of the care I’m giving. In my experience, that energy is best focused on faith.

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.

I’ll pause for a second to acknowledge: So many churches are horrible. And so many Christians hare horrible.

And so much bad has been done in the name of religion that the hypocrisy on an institutional level is bad enough to turn anyone away. Try, if you can put it aside. Because one of the great tragedies of that horribleness is that it blocks people from their faith.

But if we can put that aside and focus on that message of service & love & the underlying messages of grace, it takes us back to the critical utility of my faith. The world needs me to see myself in the care I take of others. The application of my faith reenforces that message

It reenforces a message that I am not at the center of my world. And that this world is unfair and cruel and fallen. But mine is not to spend much time on what that means to me. But instead to serve and to give and to love. And in that service and love, is where I find myself.

And finding a community of people who believe similarly and fill my days with encouragement and reminders of the message makes it easier. Saying out loud what we believe, together, makes it easier. It keeps the wolves of bitterness and self outside the camp.We’re wired for it.

And I know that there’s plenty of smart people who think my belief in God is a silly superstition that is at odds with my analytical Bayesian views of the world. I simply don’t know how to get through the day without it though.

I came to this belief through exhaustion and surrender. And it has changed my life to look the only way it can to survive. Therein lies the utility of my faith.

And now, it’s 630. And it’s time to start today. And this small version of outward expression of faith an 18 tweet prayer thread if you will, has helped. Enjoy your day everyone.

If you know anyone struggling to keep up on the journey of special needs parenting, tell them to check out what we do at Care For Us. It’s all free. And we’re always here.

Lions

My son Aidan likes to hike.

When he gets out on the trail, he just goes. He never worries about where or how long or what it’s going to be like. He just sees the trail and he goes.

My other boys can’t keep up with him. He doesn’t run. He doesn’t even walk fast. He starts right off. And he never stops.

Persistent.

Relentless.

He never complains. He just walks until the walking is done.

When he gets too far ahead of his brothers, he stops for a moment, looks at me and asks, “Friends?”

His mouth says the word. But his eyes ask the question. Are his brothers ok? Can I go make sure they’re not too far behind?

Aidans eyes do the talking for him most of the time.

He wasn’t three before the light started to flicker on and off in him. By his third birthday, it had gone dark. No talking. No connection.

He was gone.

For months, even years, he was full of fear. He’d broken connection with the world outside of himself. As he slowly came back to us, he collided with that world head on. It was terrifying for him. Daily outbursts. Constantly escaping, trying to get away.

Every experience was something that didn’t make any sense to him. He didn’t know what things meant. Or where we were going. Or what anyone was telling him. He couldn’t see the end of anything he started.

He was terrified.

But everyday, he picked himself up and did it again. He had no choice but to find the courage to wander out into a foreign and terrifying world. And everyday, he got a little braver. And everyday, the world made a little more sense to him.

He’s just a boy.

But he’s stared down a thousand lifetimes of fear by now. And he just keeps walking.

If there’s one thing my journey of parenting an autistic child has taught me, it’s that courage comes in all shapes and sizes. And I’ve never seen anything like what these amazing children go through just to fight for the chance to do it again the next day.

They’re lions. Every one of them.

If you know someone on that journey, or if you’re on it yourself, it’s good to find others that are too.

That’s why my wife Annette and I started Care For Us. Check us out at www.care4us.org. All services are free. All connections are an honor.

Life Lessons from Parenting on the Autistic Spectrum

The human brain is a complex system. Over millions of years of evolution, we’ve developed a fairly narrow range of normal behavior despite all possible outcomes. There are many different ways for a brain to work outside of the paramaters of normal behavior. There are many less ways for it to work within the paramaters of normal behavior. The fact that the overwhelming majority of us are within specs is a credit to the vast, complex biological system that we humans are.

When things go wrong with the brain, sometimes there’s an acute, isolated issue that either can or can’t be fixed. When they are discovered the outcomes are somewhat predictable. When fixable, they are fixed. When not, arrangements for the consequences are made.

Sometimes, the problem is more obscure. Things aren’t clear. The root cause is in question or completely invisible. For the 1 in 68 children diagnosed with autism, this is very often, even usually, the case. Autism is, after all, not really an ailment. Its a description of symptoms that, once scaled to a level of disability, warrant a diagnosis.

The cause is immaterial to that diagnosis.

We now know things about the impact the environment has on child development. We understand the role that the immune system can play in dealing with things. Our guts feed our brains and therefore develop them over time. We see this in rare diseases where the inability to metabolize proteins leads to severe impairment and death.

But we don’t know what causes autism. And we don’t know how to cure it.

We do know that sometimes it’s cured. And we know the types of activities and environmental characteristics that correlate to higher instances of a cure. But nothing is certain. It’s within this insight that the great metaphor of life that is autism is found for me.

My 11 year old, diagnosed with Autism a month before his third birthday, takes a dozen dietary supplements a day.  He attends hours of therapy—neurostimulation, neuro-feedback, applied behavioral analysis, music therapy, chiropractic therapy, speech therapy—every week.

It costs a small fortune in time and money to do it. And he is not cured.

The lesson of life and autism is one of regret. Or better yet, a lack thereof. I don’t and likely never will know what impact what we do for my son has on his life. Even if he wakes up tomorrow cured, I’ll never know if it were simply natural development or all that we’ve done. I do know, that based on all the latest information, we’re doing the things that yield him the best opportunity to succeed within the bounds of the resources we have available.

The notion that it could all be for nothing, and that one day we may look back at it and wonder aloud to ourselves what else, besides try to help our son, could we have done with the resources we once had, is not one I spend much time on.

It has been my experience in a life surrounded by people who have accomplished great things in vague and ambiguous worlds, that those who make a difference in anything— society, government, science, industry, other—don’t either.

Where’s Aidan? My favorite question on Autism Awareness Day

 

 

CFU2
On the autism or special needs journey? Know someone who is? Click the hand and check us out.

“Where’s Aidan?” It’s a question that gets asked out loud or in my head hundreds of times every day in my house. Aidan is my nine year old, highly energetic, happy, beautiful son. He’s also my minimally verbal, constant flight risk, moderate to severely autistic son. And not knowing where he is for too long usually doesn’t end well. Seven years into this journey, my family looks very different than I would have expected when we started this whole thing.

According to data from 2012, the CDC tells us that one out of every 68 children born today is diagnosed with autism spectrum disorder. More boys than girls— fourand a half more to be exact. One out of every 41 children born in New Jersey, where Aidan was born, are diagnosed. Those are concerning numbers for prospective parents, even more for those who have kids and are starting to get that dark, alone feeling that their kids are different. Dark and alone are important words when it comes to Autism-it’s where we all start, and some of us stay.

Most of the energy around the autism discussion is around finding “the cause” or “the cure”. And that’s good energy because if we can spare people the outcomes of autism, we should. My boy is not perfect in every way. I’ve been up since 3AM, because that’s when he got up. You can’t get someone back to bed when they don’t understand time or are episodically detached from the fact that they are going to get in trouble if they don’t.  And you can’t go back to sleep because he’s smart enough to go get dressed and take a walk, to Mexico if you let him.  I love him unconditionally, but I would fix him in a second if I could.  So finding causes or cures are important. Except that it’s probably not a cause, or a cure.

If you spend enough time around the autism community you start to realize that it’s not one problem. There’s all kinds, with all kinds of causes, and all kinds of treatments.  So the angry vaccine debates and the frustrated food additive advocates can rage on.  That energy will ultimately lead to something good.  But it’s actually not why I’m writing this, sitting on my son’s floor, now just before 5AM, as he rewinds the same part of The Land Before Time over and over again to watch it, giggling with delight. I’m writing it because it’s Autism Awareness Day.  And I’d like to offer a call to action, not for a cause, not for the kids.  I’m offering a selfish call for help to the selfless— the parents of autistic children.

Seven years ago this fall, I was deployed to Iraq when my wife sent me an email telling me to call her.  I had been gone three months. She usually didn’t do that so I knew something was wrong. I got to the nearest phone and when she picked up I could tell she’d been crying. She told me she had taken Aidan in for an assessment, and the doctor told her, with cold certainty that he was autistic. The lights went out in the building I was in with the word still hanging in the air. Our generator died. Talk about timing.

I ran to another part of the camp where I knew I could find a phone. We talked for a bit, she gave me the details, about how he had stopped talking shortly after I left about how she knew something was wrong before but I wouldn’t listen. I hung up and hurried out of the building as quickly as I could.  I had to get back to where the lights were out quickly before I lost it. When I did, the flood gates opened. As I walked back to our side of the camp, I mourned the life that I just lost and the future we’d planned. I wrapped myself in dark thoughts as a trudged back along the banks of the Euphrates, where men had carried dark, lonely thoughts for millennia.

A mentor of mine once told me that the richest parts of our life are the walks back to the path we were on when something knocks us off it. And he was right because the walk back for me and my family has been a rich one. But it’s also been a long one with lot’s of tail winds. My wife and I have a strong relationship, but the diagnosis and my response to it almost drove our marriage off a cliff. When autism families are open and honest, most will tell you some version of the same thing. We have three graduate degrees between us and an income that allows us to live in a gated community. We can close the resource gap for things like house cleaning laundry, yard work and specialized childcare through money.  We have a great school system in our neighborhood and a strong church with a special needs community walking distance from our house.  And here’s the message I want you walk away with.  We have just about every advantage you could think of as a family with an autistic child. And we barely get by.

I have no idea how in the world a family with any less resources than us has any chance at all. Yet somehow, they find a way, sometimes. But sometimes they don’t.

So here’s my call to action. Someone somewhere in your life is struggling with some function of this journey. I promise you. If you don’t know anyone, then you’re not paying attention. So that’s my first ask. Pay attention and keep an eye out for someone somewhere who may be in need. Here’s my second ask. Help them.

What does help look like? It’s not much. Ask them how they’re doing. And listen. If you want to get your families together, offer to do at their place, it’s easier. And show up on time to things. We have windows for recreation that open and close on their own. Teach your kids how to engage with theirs so that one day they might be able to help care for them and give them a break once in a while. Remember, we’re likely going to be parenting for 50 or 60 years and leaving our kids to someone else after we die. That mountain is best climbed with others.

If you’re a grandparent or an aunt or an uncle, don’t tell them that they’re over reacting and that things will just be fine. They might be—but probably not. They’re not looking for a life’s lesson or hard love. They’re about to get a lifetime of both. And the things parents and siblings of autistic parents say in the minutes hours and days after a diagnosis can be either a great source of strength, or pain for years to come. If you’re a husband and your wife is telling you something is wrong and she wants to get your child tested, listen to her.  And support her. I didn’t and the fact that I left her to do it alone is a regret I’m not putting down any time soon. The great thing about helping autism parents is it really looks a lot like being supportive, and available and loving. And that’s not hard.

What better day to start than Autism Awareness Day…or Saturday…as we call it in our house.