Spielberg couldn’t show the shark. He didn’t have digital special effects or a blockbuster budget; just an underwater camera and a mechanical rubber shark that kept sinking in the bay. So he had to find another way. Continue reading “The Power of Constraints”
-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents and their kids be the best they can be. This is Part-4 of a series chronicling their story. For previous posts click here.
The days after Aidan’s diagnosis were a blur. I felt sick to my stomach every day. I avoided seeing or talking to anyone because I couldn’t speak without crying. I was counting the hours until Sean would get home. When he did I could immediately see a difference in Aidan. He was very relieved to see his daddy and I realized how confused he must have been. My oldest cried every night he was gone but he understood where he was and that he was coming back. Aidan would start crying and wander around saying “where he go, where he go.” He had regressed very quickly with Sean gone. So when he ran to him and said “daddy’s home” my heart leaped and for one brief moment I wanted to believe it was all a mistake and that he would be fine now that his daddy was home. That’s not how it went though.
The next few weeks were filled with trying to keep things as normal as possible for the kids. It was the holidays after all. We did all the things that Christmas that I didn’t think we would have been able to do with Sean gone and me with a baby, 2, and 4-year-old. On the outside things looked pretty normal. On the inside we were trying to make sense of our new normal. Yes, he was still our same little boy that he always had been, but he couldn’t talk anymore and he couldn’t sleep anymore. It would take hours to get him down and some nights he would just wake up in the middle of the night and be awake for the rest of the day. We didn’t know this was a common issue with kids on the spectrum. It was one of the many things no one thought to explain to us. We were left to figure it all out for ourselves. Even then, only seven years ago, the medical community was still very divided on the medical issues associated with autism. So we turned to the internet-scary- and to other parents who were farther along on their journey.
We had early preschool screenings, ABA screenings, pediatric specialist appointments and we had to fit it all in before Sean headed back to Iraq. Doing it on my own would have been next to impossible in my exhausted state. Just figuring out the insurance aspect of it alone was a nightmare. We were fortunate because of Sean’s active duty status that we had Tricare. It covered everything. It was figuring out how to enroll in the specific programs that took skill and patience. My son would need speech, ABA, OT, and PT. I remember thinking over and over again that without insurance, this would be impossible for anyone. What in the world do the people who don’t have it do? Who is looking out for them? How about the single moms? Or the families where both parents worked multiple jobs? It broke my heart just thinking about it.
We were able to get through it though. And soon after Christmas Sean went back to Iraq.
It took three months from the time Aidan was diagnosed to when his first early intervention services began. He started special education preschool six weeks after his third birthday. It took another month to start speech and occupational therapy and another month after that for ABA therapy to start. It had now been over a year since I said the word Autism out loud. A whole year had gone by before I felt like he was getting the help he needed. I’ve heard over and over again people talking about the over diagnosis of autism and criticizing the push for diagnosis from over sensitive parents and the stigma of labels, blah blah blah. Here’s the truth. If you don’t get your child in need diagnosed, you cannot get services. So pushing it off, to see if they will “outgrow it,” only means your child is not getting the help they need to be the best person they can be. Let someone qualified tell you they don’t need help.
As for labels? Labels are what you make them out to be. My son was diagnosed with autism. It does not define him. It is not all he is or all that he can be. It has impacted all of our lives, but that does not have to be an absolute negative. Not getting him the services he needs would be.
Soon, my husband would be home for good. And the rest of our journey could begin together. this was our new reality. My only regret, is that we could have started sooner.
It was really hard being back. Hours earlier I was planning missions in a war. Now I was laying with my son, trying to get him to sleep. Which he just wouldn’t do. It would take hours. I would lay with him and he would thrash and flop around. He wouldn’t talk to me. He wouldn’t talk to anyone. I would lay there in the dark, slowly sinking into the darkness with him.
By the time he finally slept, the whole house was dark and it was the middle of the night. But I was still wired. I was out of sorts from the time change and all the other differences. I couldn’t sit still. I would walk down the street to the park to run laps or do table jumps long into the night and into the morning. One night, while doing box jumps onto a concrete picnic table, I missed and ripped open my leg. I jumped for a little while longer until I realized how bad it was. There was blood everywhere. It was splashing in a puddle on the table as I jumped into it. So I stopped. I limped over to my car and drove myself to the hospital. They stitched me back up and I was back at it the next night. I was trying to be happy to be home, but I was stuck in between. Lost.
We got through what seemed like an endless list of appointments. It was good to stay busy and keep my mind off things. And it was good not to miss Christmas. I can’t imagine how that would have been without me there. After it was over though, it was time for me to go back. I don’t remember saying goodbye to the boys. But I remember my wife dropping me off in the minivan we had bought just before Ryan was born. It was the middle of the night, on the beach behind my command in Coronado. For the rest of my life I will remember the window of the car rolling up after I kissed her goodbye. I have trouble remembering a lot about that time. Large blocks are just gone. But not that.
Back in Iraq, I settled back into the routine. I stayed busy. I tried to keep my mind off of my family. We kept working nights and doing our thing. But I couldn’t sleep. At all. The fatigue started to get to me. I could feel myself shutting down. I remember one day, a slow day where we didn’t have any work, I looked at my side arm in my desk drawer and for just a second and wondered if that wouldn’t be better for everyone. I was too tired. And going home would be no relief from any of it. The thought passed though. And I never had it again. Not before. Not since. I only bring it up to make the point of how far I’d dropped from where I was. That was the bottom.
It wasn’t long after that day that one morning, while trying to fall asleep in my blacked out trailer, I noticed a stack of CD’s piling up next to my bed. The church Annette started dragging me to before I deployed was sending me recordings of the weekend messages. I hadn’t opened any of them. In an act of thorough boredom and fatigue, I opened one up and put it in. When it was over, I put in the next one. And then the next one. It was hard to describe how they made me feel. I didn’t buy the message. I never had. But something felt comforting about watching them. I didn’t feel alone. And the darkness felt less so. So I kept doing it, until finally, I drifted off to sleep.
I kept it up for the rest of the deployment. I had a couple of dozen backed up since I left. So I would watch them and fall asleep each morning. And each day sleep got easier. Until finally, it was time to go home. For good.
-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents and their kids be the best they can be. This is Part-3 of a series chronicling their story. For previous posts click here.
When I got home, my parents were anxiously waiting for me. I quickly told them what the assessor had told me, handed Aidan to one of them and ran upstairs. I don’t even remember if I acknowledged my other children. I remember hearing my father tell my mother not to follow me. I sat alone on my bed in an exhausted haze. I was sobbing and felt sick to my stomach.
I knew. I had known for eight months. How could I have let eight months go by! The average diagnosis for autism is well over three. Aidan was still two months away from his third birthday, by most standards I was early. So why was I feeling so guilty? I know now that it was the grieving process, a very real phase that all parents of special needs children go through. But at the time, I just felt like I had let him down.
I first learned about Autism on Oprah and was instantly fascinated and confused by it. Every child acted differently. I couldn’t make sense of it at all. But the epidemic was on the rise and we teachers and older parents were being told to be on the watch for it. And now it happened to us. To my son. Aidan was now a statistic.
As I sat there in that dark state, I had what I can only describe as an out of body experience. I felt like the air was sucked out of the room. I could hear wind but there was none. Then I felt an overwhelming calm and peace. I heard the words, from somewhere.
Everything is going to be OK.
I have always been a believer, grounded in my faith. I had felt this feeling of calm before in dark times. I was feeling it again.
Aidan is going to be fine, you are going to be fine, I am with you.
In that moment, my darkest moment, I felt peace. I believed it.
All of Aidan’s life I had been worried about him. We got pregnant with him when his older brother was just nine months old. Because I was older, in my late 30’s and the pregnancies were so close together, I was considered high risk. We were poked and prodded all the way through it. The entire pregnancy Aidan measured small and had low movement. At 20 weeks we had advanced genetic testing done and it was nerve wracking. On the car ride to get the results, I told Sean that I didn’t care what the tests were we are keeping this baby. He was less sure but it was clear the entire notion seemed to panic him. But it forced the thought. I believe to this day that the process was God’s way of planting the seed in us.
So there I was, three years later and for the first time in Aidan’s life, I felt that I was not going to lose him. Not in the way I feared, not in any way. After Aidan was born I had panic attacks brought on by the overwhelming feeling that something horrible was going to happen to him. I never told anyone. I chalked it up to postpartum emotions. But it never completely went away. I was always watching over him too closely and holding him too tight. I would have dreams of him getting cancer or getting in a car accident. I was in a constant fear that I kept all to myself.
But on that day, the day when I should have been feeling that my worst fears had come true, I felt peace. I felt the Lord tell me that this is what He had been preparing me for.
You are not going to lose him. I am with you.
Within minutes of that realization, the phone rang. It was Sean. He told me everything was going to be OK, and that Aidan was still our beautiful little boy, and that he was coming home to us.
It took me a few hours to work up the courage to tell someone. I didn’t know what to say. Or how to start the conversation. All I knew was that I needed to get home because I didn’t think that there was going to be a home to get to if I didn’t. But I didn’t know how to ask. And I didn’t know how I felt about leaving my guys. I wasn’t vain enough to think that they couldn’t do it without me. They could. That’s the kind of troop we built. But I also knew, that if I left, and anything happened to any of them, I don’t know if I would ever get over it.
That morning after the mission spun down I found myself alone with the operations officer in our shared office. He was technically my boss but he was the same rank as I was and had graduated just a year ahead of me at Annapolis. We’d become friends over the last three months. But still I struggled to find the words. So I just blurted them out.
“I talked to Annette today. Aidan was diagnosed with autism.”
He wasn’t married. And he didn’t have any kids. And the last time he was out there he’d lost some of his platoon and got shot up pretty bad himself. I had no idea what he was going to say. He’d sacrificed much for this war and somehow I felt lesser for asking him what I felt like I needed to ask him. For what seemed like an eternity he just sat there.
“I’m sorry to hear that Sean.” he said in the direct, clear way he spoke to everyone in just about every circumstance. Then he asked me the question I didn’t have the courage to answer.
“What do you need?”
I couldn’t get the words out. But he knew. And he never made me ask it.
“Let’s go talk to the skipper.”
Standing in my commanding officer’s office, I told him what Annette had told me. Without hesitation he looked up from his stack of papers and told me I needed to go home. He didn’t ask.
I responded apologetically. “Just a week, maybe two, just to help set everything up for his treatment and the medical crap.” .
“So you’ll be back the middle of December?” he asked.
“That’s the plan.” I said.
“That’s a stupid plan.” he said and then he paused and looked me square in the eye and said something that I know now, probably saved my family.
“Don’t come back until after Christmas. Go take care of your family Sean. We need you. But we need you right. And I don’t want you here if you’re not. We’ll be fine until then.”
And that was it. He drafted a release letter to get me out of the war. And our air planner got me a flight out, scheduled a week later. I called Annette and let her know and told her that everything was going to be OK. And that no matter what, we’d get through it. I didn’t believe it. But it was my script. Over the last fifteen years or so I learned to deliver it through other times that didn’t end up OK either. So I did it one more time.
Over the next few days, the shutdown began. When I wasn’t at my desk or in the planning room working, I was locked in my trailer sitting in the dark. Thanksgiving came and my guys knocked on the door and asked if I was going to eat. I sat there silently and waited for them to leave. A dark rage began to grow inside me and all I wanted to do was feed it. It felt good. It was consuming and it helped me focus. If I let it wane, my thoughts would scatter and the sadness would come.
When the day came for my flight, I sent a two line email to my lieutenants telling them that I was heading home for a few weeks and why. That night we kicked off a heavy operation sweeping through the desert rolling up known terrorists, our largest of the deployment. I worked the plan all the way until my ride took me to the helo and out of Iraq. The last thing I saw on the screen in the ops center was an overhead view of multiple tactical units moving on targets. I was bathing in anger, secretly hoping for violence. And then I was gone.
Two helicopter flights, a C-130 and then a commercial flight out of Kuwait and in less than 36 hours I was on a plain touching down at Lindbergh field in San Diego. I still had the Jazirah Desert dust on me as I walked through the airport. And then they were there. My wife and my three boys. It was night, way past their bed times, but she had gotten them dressed and brought them. They looked so different. Ben was huge. Ryan, just an infant when I left, was unrecognizable. And then there was Aidan. He had a distant gaze that fixed on me as soon as I knelt down to hug him.
“Daddy’s home” he said.
-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents and their kids be the best they can be. This is Part-2 of a series chronicling their story. For previous posts click here.
The first few months of the deployment were as brutal as I thought they would be. None of my kids were good sleepers. And none of them were able to do anything on their own. I would have nights where I was up trying to get one of them down to sleep and another one would wake up. And then it was all me all day. Ryan was still nursing. It felt like my body never recovered from the first pregnancy and I’d just gone through two more. I was completely spent.
In late November of 2009 I finally made time to get Aidan properly tested. This was after his preschool early learning assessment came back, “not able to be tested in my category.” The tester referred me to the San Diego regional center. It was a Friday and Aidan was a mess that day. My parents came over to watch the other boys. I remember thinking, as I kissed them goodbye, that everything was going to be different when I saw them again.
I sat with the assessor for over an hour, answering what seemed like hundreds of questions. All the while Aidan was climbing all over me and was running amuck in the little room. When it was over the results showed definitively that he had Autism Spectrum Disorder- a moderate to severe rating.
I walked out of the room in a fog carrying my two-year old. The case worker walked me to the elevator and told me someone would be in touch soon and asked me if I was ok.
Ok? I thought to myself, no I’m not ok. What a weird question to ask. I have since heard dozens and dozens of people with similar stories and they all make me sad. These poor people were not trained to handle the aftermath of the results. They were assessors, not care givers. They assessed and moved on.
I’d like to believe it’s better now but I really don’t know. As a trained marriage, family and child therapist, I know there’s a right way and a wrong way to handle it. I know that how those first minutes and hours are handled after that diagnosis can have long lasting affects on the whole family. I know that because of how it was for me. I wish my results had been handled differently. I wish I had not been alone. I wish someone had told me it was going to be ok instead of asked. There’s only one answer to that question when it’s asked to who they ask it to-No. Not now. Not ever. That’s how it feels.
By the time I got to my car I was sobbing. I strapped Aidan in his car seat, something that at almost three, he should have been able to do himself. I looked at him and felt that I had let him down. I felt that I let this happen to him. I felt that I failed him. He looked at my tears and for a split second he looked sad. I sat in the parking lot for a few minutes hoping Sean would call. He was supposed to call at 3:00, to find out how it went. The phone didn’t ring so I started to drive home. Still crying, I had to finally pull over because I was so upset my nose started to bleed. Then the phone rang.
The first few months of the deployment flew by pretty fast. We were working in the west, where, earlier in the war, most of the heaviest fighting had been in cities like Falujah and Ramadi. By 2009, the insurgency was on the run and my guys were out just about every night closing it out.
As deployments go, from a quality of life and personal safety perspective, it was pretty light. I was a Lieutenant Commander and I led a pretty big team. Which means when my guys were out, I was back at the headquarters. I woke up around noon, hit the gym and made it to the HQ by one o’clock to figure out what he had lined up for that night’s operation. We’d work on the plan all day and then execute at night. After my guys left, we set up in the operations center and drove the plan from there. When they got back safe, usually around sun up, I’d wander back to my trailer. It took lots of focus and long hours and I felt like I was trapped in a space that was about a hundred square yards for months. But the time went by fast and we were kicking serious ass trying to finish off the war.
When I got back to my trailer, I’d try to Skype with Annette. It usually didn’t work, but it did from time to time. One time, I did it without setting up an appointment by email first. She answered and man she look spent. The kids were crawling all over her. She looked like a zombie. She said she was sorry but she couldn’t talk. What I wouldn’t have done to be with them and let those boys tire me out. I hadn’t seen them in three months. They looked so different. That was the hardest part of the deployment, by far. Missing them.
A few weeks before Thanksgiving, Annette sent me an email. She told me she was going to get Aidan assessed for autism. She was still worried. I remember thinking, good, we can finally put this to bed once and for all. On the day it was scheduled, I called from the phone in my office. It took me forever to get it to work. But it finally did. I said hi and asked her how it went. I immediately knew something was wrong. She didn’t say anything for what seemed like forever. And then she said it.
“Sean, he’s autistic”.
Then the lights went out and the phone went dead.
I ran out of my office in the pitch dark. I heard our logistics officer calling out as I sprinted out the door that the generator had died. I didn’t care if a mortar had taken it out. I needed to get to a phone. A little further to the north, on the same base, one of the groups that we worked with still had power. They were on a different generator. I sprinted over found a phone and called Annette.
We talked. She told me the details through hysterical crying. I tried to calm her down, tell her we would be all right. But she was inconsolable. Eventually, I had to hang up and head back to my side of the camp. I walked out of the phone room and passed a few guys I knew. I couldn’t look at them. As I walked outside and headed towards the edge of where the flood lights ended and into the darkness, I broke down.
I could see in the distance, my team was sitting around a camp fire by now. The generator was still down. I walked as slowly as I could in the darkness along the banks of the Euphrates, the emotion running out of me, sobbing, uncontrollably. In that moment, I knew the life I had planned was over. I just wanted to hold my boy. But he was gone. And I was on the wrong side of the world.
I started to slow my breathing to control myself before I got within earshot of the campfire. As I got closer, I wiped my face and noticed they were huddled around some papers. I had forgotten, the guys were ready to go out again tonight. A few steps away now, the operations officer, my boss, noticed me. His raspy voice broke what felt like a permanent silence.
“There you are man. Need your eyes on something”
I hated school. Actually, that’s not entirely true. I liked being with my friends and playing on the basketball team and being in the band and recess and talking to girls. I liked learning too. I liked learning just about anything. Math, reading history and science-especially science. I liked all of it. I just hated class.
From about the time that I was ten to the time I reached high school, the most common thing that happened to me in a classroom was that I was thrown out of it. It happened at least once a day. There were days when I was thrown out of every class that I was in. That’s not easy to do. I was told to wait outside in the hall until class was over or sent to the principal’s office. I had my own desk there. I never got a detention. I was never suspended. I never got in a fight. And I never picked on or bullied anyone. Even my teachers, the ones that threw me out of class everyday would have admitted, I was a pretty good kid. So what was the problem?
Me in a classroom was the problem. I never shut up. And I could never keep still. And I was a nightmare for every teacher I ever had who tried to get through a lesson with a couple dozen other kids to tend to. I drove them crazy. I called out. I cracked jokes, usually on the subject. I talked to the people around me. It never stopped. If you ever taught me, and if you’re still with us and if I didn’t send you to an early grave, I’m sorry.
Things eventually turned out OK for me. But not until I pretty much quit on school.
That’s my high school freshmen year report card. Notice the hand written notes from my mother, God bless her. Mostly F’s, a few C’s. Because after years of getting thrown out of class, I just stopped going. Which is why I’m writing this now. Because there’s no reason it has to end the way it did for me. But you also need to know, that even if it does and even if your kid is as big a nightmare as I was in the classroom, it’s probably going to be OK. But there’s a few things you need to know that can help.
There actually is something wrong with your kid.
I know that’s a taboo thing to say these days. But there’s something wrong with everyone’s kids. It’s just that the something wrong with your kid, the same thing that was wrong with me, makes classrooms and then school a disaster. If you’re interested in helping though, it’s an important thing to come to terms with. It doesn’t mean he or she is a bad kid. Or that you’re a bad parent. Or that they’ll be labeled for life with a stigma. It just means there’s a cause here. And causes are good. Because you can usually do something about them. Chances are, if your kid is like I was, he or she has some function of neurological developmental disorder, likely Attention Deficit Hyper Activity Disorder or ADHD. ADHD is not an excuse or something people these days say because we are allergic to discipline. It’s a real live disorder that’s always been around. And it makes it really hard for your kid to handle the classroom environment.
Just like any other part of the body, the brain develops as your kids grow up. In kids with ADHD, the parts that manage impulse control, focus and executive planning are underdeveloped. The good news is, eventually they get somewhat or completely better just by growing up a bit. The bad news is that pretty much no matter what you do, your kids often literally can’t control themselves. Which makes it near impossible to exist in class. And maddening to be their teacher.
There are tons of treatments and therapies and even medications that can help. There’s lots of options. But it starts with coming to terms with what’s going on with your child. It’s not going away. And “getting tough” alone won’t cut it.
The classroom is a miserable place
If I jumped into my time machine and traveled back a hundred and fifty years, grabbed someone off the street and jumped back to today, there’s not much that person would recognize about the world we live in. Cars, plains, electricity, internet…radio. Everything is different. The one thing that would make sense to them, would be the classroom. Because it really hasn’t changed that much. There’s a teacher and a lot of people sitting there watching them talk or point to things. It’s a lousy way to spend your day, especially if you’re a ten year old boy. And if you’re a ten year old boy whose brain is developing differently than others, its a miserable experience. I’m 40, and the times when I’ve had to jump back into learning environments like that for training at work or other projects, I’ve wanted to stab myself in the eye with my number two pencil. We’re overdue for massive changes in the modern classroom. But that revolution probably isn’t going to help your kid. Because it’s not getting here fast enough. So, try this instead:
Talk to your child’s teacher, and see how you might be able to adapt the classroom to help. If he has a diagnosis related to his issues, use an Individual Education Plan (IEP) to ensure that it’s formalized and constant. For me, either sitting in the very front of the classroom or very far in the back was actually effective. Simple geography took away most of the temptation to act because my issue was my inability not to engage those around me in conversations. If your kid can’t sit still, maybe he doesn’t need to during lectures. Maybe she can stand or pace in the back. There’s lots to do in that space that can help. There’s lots of new project based schools that are starting to spring up too. See what you can do to break the cycle of acting out, punishment, diminished learning and then acting out. Because if you don’t, the teacher can’t teach, and your kid can’t learn. It’s a partnership with the teacher, who hopefully by 2016 gets it that is the key to adapting to the classroom.
Punishment isn’t going to work.
The science behind punishment is pretty clear. In order to punish your kids out of impulsive behaviors, you have to punish them so severely, you create trauma. And unless you’re interested in sending your kids to rehab before they get their drivers license, you don’t want to mix impulse control issues with childhood trauma. It’s not pretty. All that throwing me out of class ever did was make me feel like a misfit. And it never stopped me. And at the end of the year when everyone went on a class trip, and I wasn’t allowed to go because of my poor conduct grades, I was left behind with a handful of kids who felt the same way. That group of a half a dozen kids included me, someone who is now a convicted serial murder and another kid who eventually killed himself in a hostage standoff with police. I’m not saying things would have turned out better if we got to go on the trip. But holding them out of it clearly wasn’t the “tough lesson” they needed to straighten themselves out. As for me, I felt like I was a bad kid for a long time. And it never made me better. So just skip it.
Stop telling your kid and yourself that they’re just too smart for the material.
I was told over and over again that I was too smart and that the curriculum just wasn’t challenging enough. If only there were a way to make it more challenging, I would be forced to pay attention and would therefore behave. They’d point to my test scores as proof. And both myself and my mom would feel better, no longer burdened with the accountability of my actions. It seemed like a fair explanation. But it was nonsense. There were scary smart kids in my class who played a half a dozen instruments, spoke French and could do sixth grade math when they were in preschool. And none of them were getting thrown out of class because they couldn’t behave. Because none of them had the problem I had.
Do keep your kid engaged at school
This is probably the only part that matters. It matters more than keeping up skills at grade level. It matters more than their “citizenship” grades. And it matters more than their test scores. You really don’t get anything for winning 7th grade. The world doesn’t care what your fifth grade report card was. None of it matters. What matters is that when you get to high school, that you wake up in the morning and you don’t look at the day ahead of you with a sense of horror and dread because school has been a miserable experience for you. That’s where 15 year old me was. But a change of environment and some mentoring fixed it pretty quickly, because I didn’t hate school. I just hated the classroom.But I stayed engaged outside the classroom and when I got in the right environment, it was a quick turnaround. The classroom was always going to be hard for me. It was all the way through grad school. But school wasn’t. I went to dances and played in the band and played sports and participated in the gifted and talented program. And all of that eventually saved me. Put your parenting energy there. And do what you can to manage the rest.
There are actually good things about how your kid is different.
I have more ideas than any two people I know-more good ideas, more bad ideas, more average ideas. It never stops. It’s a constant flow. And as I got older, it got easier to focus that mental energy. Part of it was because, just like my body, my brain filled out. The other part was because I’ve learned tools to help like meditation and mindfulness. But that focus just sits on top of a basic mental energy that is really powerful in many environments but disastrous in a classroom. When I worked in the Navy’s branch of the Special Forces, I was surrounded by crazy ADHD adults, moving at a million miles a minute, full of creativity and energy, capable of intense situational focus. Now, I run a team at a world class software company and write a blog that over a million people read last year. At work, I’m surrounded by weirdos that exist on a different mental plane than anyone I know. None of them could sit in a classroom for five minutes. And they make amazing things and more money than you can imagine. Because there’s value in the dynamic mind. I don’t know how any of them were in fourth grade. I don’t even know where most of them went to college-if they went at all.
Here’s the truth. Your kids are going to live most of their lives outside of school and outside of your direct protection. We tend to evaluate our whole parental experience on how they work in the classroom. It’s not fair to them. And it’s not fair to us. So take a deep breath, work with your kid’s teacher and keep them engaged and feeling as good about their experience as they can. Because it matters a whole lot more that you don’t get it wrong than it does that you get it exactly right.
Liking school is more important than being good at it. And it’s not close.
“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-four and a half times 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 had 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 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 family’s 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, 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.
