A woman once asked my wife, if we knew then what we know now about our severely autistic son Aidan, would we still have gone through with it. It of course being him. The answer to that question for most emotionally healthy people, is of course, yes. The woman didn’t really know any better, I guess. She was young. With no family yet. And she didn’t really grasp the fact that she was asking another woman if she’d rather her child had never been born. My wife gracefully brushed it off, only bringing it up to me in passing the next day. Continue reading “Gracist”
-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-5 of a series chronicling their story. For previous posts click here.
Flash forward seven years and Aidan is now ten-years old. He sleeps ten hours a night like any normal healthy child should. That alone was a journey. He is a happy, loving boy. He has friends who care about him and two loving, protective brothers that don’t remember him any other way. He likes going to school, though some days are harder than others. From the outside he looks like any other neuro-typical fourth grader. But he’s not. Not exactly. He does have some language, though he still doesn’t speak in complete sentences. And though he’s much better at expressing his needs, it’s clear that you have to engage with him much differently than you do with other children.
Most of his bio-medical needs have been taken care of—yes, these are real problems for kids on the spectrum. He had gut issues, subclinical seizures, food allergies, vitamin deficiencies just to name a few. After what seemed like endless searching, it took us six years to be referred to a qualified neurologist. The science was starting to catch up with our needs. She put Aidan on a heavy vitamin regiment and anti-seizure medication after finding out he had irregular brain patterns. Interestingly, a DNA test showed that he did not have the known genetic markers commonly associated with autism. We don’t know what that means. Only that we don’t know exactly what triggered his developmental changes. It’s a question we may never get answered.
We don’t know what future will bring us. What we do know is it was a lot of work to get Aidan to the place he is today. Too much work for just us. It took a village. We couldn’t have come through this without the help of our support system and our faith.
Care for Us was born from the struggles and triumphs of our life as a family on the spectrum. We are committed to the idea that we can help new families in the early stages of the journey get the emotional support they need and continue to help those farther along stay strong through all stages of life. Community is important. Most people have no idea the emotional toll it takes on a family to raise a child with special needs. It affects you individually. It affects the marriage. It affects the other siblings. When we give and give daily, it’s easy for that well to get so depleted that we just want to give up. That’s when we need the strength of community and faith.
This story started with her story and his story. We were worlds apart physically, mentally and spiritually. Now we are one. We’d both change lots about our journey as a family. And there are things we’ve been through that we wouldn’t wish on anyone. But the family bond we’ve grown through the hard days and nights of autism is something I wish for everyone. Our mission is to help families like ours find it.
Though our journey is far from over, we have been able to come through this with a burning sense of purpose to give back to others. If you’re reading this, then you’ve found us. And if you’re on this journey and you’ve come this far, or know someone who is, then perhaps you’re willing to go a bit further. Look around the site. And reach out to us. We’re here. We’ve got support groups and counseling. All free of charge. You just have to show up. Because we know, especially in the beginning, simply showing up is about all you can muster. And If you do, you’ll find the power of spending time with others on the same journey, face to face with them and the world of struggle and triumph that we see every day.
Life with others is life better lived. And circles are better than rows. Find your circle. If you can’t, then find us. We’ve got a few for made just for you.
-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”
-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents be the best they can be for their kids. This is Part-1 of a series chronicling their story.
Most of 2008 was just a blur. By the fall, my son Aidan was 21 months old, his older brother Bennett had just turned three and I was just ending my first trimester, pregnant, with our third. I was exhausted.
My favorite time of the day was nap time. I woke up every morning thinking, just make it to nap time. Around then, I started to notice changes in Aidan. The first was that he wouldn’t sleep. He had been an easy sleeper up until then but something changed rapidly. It wasn’t that he didn’t want to sleep. It seemed like he couldn’t. He would stare at me as if trying to tell me something was wrong. His eyes said, I’m so tired momma but I can’t sleep. It broke my heart. I also noticed he was starting to grind his teeth. His acquired language was starting to slip and he had taken to grabbing my hand and pulling me or pointing to the things he wanted. He started calling his brother by his own name instead of the precious Bee Beet he had been calling him for months. He would only occasionally come when I called his name. I was starting to get concerned. But I was also exhausted.
I was on my third pregnancy in four years. We had moved cross country twice. I had recently lost my mother-in-law to ALS and my husband had been recalled into active duty in the Navy. We also found out he would be deploying to Iraq soon after the baby was born. It was a stressful time to say the least. So when the fears that something was wrong with my sweet boy would surface, I would quickly chalk them up to exhaustion or paranoia.
The spring of 2009 brought our third son. Did I mention I was tired? Aidan’s symptoms had become more pervasive. On Easter Sunday my sister asked me, with some concern, when Aidan had started walking on his toes. It had been about a month. By then his jaw clenching and other sensory issues seemed to be getting worse. Then I told my sister and my mom that I thought he was autistic. My mom looked at me like I was crazy. She told me, “don’t even say that”. I thought to myself, why because saying it will mean it is true? It was the first time I said the words out loud to anyone except my husband. Aidan was now 26 months old and I had silently known for months that there was something terribly wrong with him.
I kept checking the autism websites and watching the checklist of symptoms grow and grow. My husband would tell me I was crazy. He would go sit with Aidan and play with him. I would watch him engage with him. They would sit and sing and talk and play and then I would tell myself I really was crazy. But I knew. His speech growth was at a complete stand still. He would open his mouth to say words he used to say and he would look lost. It was like he was a stroke victim. The words just would not come. The darling little “excuse me” he used to say when leaving the table was now “snee snee” and bee beet, Aidan’s word for Bennett, was no longer being said at all. In desperation I would tell him a million times a day I love you, just to hear him say the one phrase he seemed to be able to still manage with ease. He looked lost and confused. He looked scared and there was little I could do to help him make sense of his world.
In the late summer of 2009 my husband left for a six-month deployment to Iraq. I was exhausted and terrified that I would not be able to handle my new reality. I was feeling so guilty that I had still not made the time to get Aidan properly diagnosed. Five precious months had gone by since I first said the words autism out loud. Five months of watching him regress daily. Five months of arguing with my husband that something was wrong. Five months of no early intervention. Those five months are still a source of great guilt for me. I will never get them back.
Even now, seven years later, I remember the overwhelming feeling of accomplishment I had on the way home from the hospital with my third boy Sean Ryan-called Ryan. We had been pretty busy. He was our third in a little over three years. All three pregnancies had gone pretty smoothly. Annette was a champ through it all. As I drove the minivan out of the parking garage at the Balboa Naval Hospital, I took inventory of it all. We had three healthy boys, a roof over our head and I had a job that provided for us. We’d been through some really rough times, but most of that was behind us now. We’d made it. My family of five was ready to thrive.
It wasn’t easy to get there though. Five years earlier, I had transitioned out of the Navy after back to back deployments in Operation Enduring Freedom. I had a really hard time with the change. My mother had been diagnosed with ALS so we moved back to the east coast to care for her. She died a few months after we got there so we moved back to California less than 18 months after we left. I struggled to transition into a new career when we returned. I was horribly unhappy in my work. Whatever I did felt petty compared to the life in service in a time of war. I was detached. I had been in the Navy my entire adult life. Now I was lost.
With our first two kids, I had a really hard time adapting to parenthood. I had no patience. I was under so much stress trying to balance starting a new career and trying to keep my extended family together while my mom withered away. It felt like I was angry all the time. Bennett, my oldest was a mess. He wasn’t hitting any of his milestones and he was almost impossible to handle. It felt like all I did was yell at him. But then, not too long after Aidan, our second was born, he started to come around. He started talking and then he didn’t shut up.
I have to admit, when I got called back into the Navy just before Aidan’s first birthday, I was relieved. The boys were doing great, work was going to be stable again and things all felt like they were starting to come together. When we found out we were pregnant with Ryan, even though we didn’t plan it, I was excited. So when the pregnancy went without a hitch and he was a healthy fat blonde baby, all seemed right with the world. Which brought me to that memorable minivan ride as a first time family of five.
I found out shortly after that I was going to have to deploy to Iraq that summer. I knew I would eventually have to go and that it would be tough for Annette with a four-year old, a two-year old and a six-month old, but I also knew it was time for me to get back into the fight. I hadn’t felt whole for a long time. I was back where I belonged. And I was ready to get through another tough trip out to the sand box.
Before I left, Annette told me that she was starting to worry about Aidan. He wasn’t really talking any more than he had been for a few months. I noticed that he stopped running over to me to greet me at the door when I got home from work. She was worried something was wrong. But she was always worried something was wrong. She spent years being worried about Bennett, and he was turning out fine. It always bugged me how much she seemed to blow that kind of stuff out of proportion. Every headache was a sinus infection. Every bruise was a broken bone. And now around every corner, our kids were messed up in some way. Things were getting better and we just needed to get used to things being ok again.
Leaving them on the tarmac in San Diego to head off to Iraq was one of the hardest things I’d ever done. It broke my heart. I’d never deployed with kids. And I didn’t know how to shut off the sadness. All I could do was go numb. My friend Dan, who had left on the first flight a few days earlier had gotten his legs blown off that morning. They let us know in the ready-room for the flight. I couldn’t tell Annette. It just would have worried her. The last thing I remember was that Aidan kept trying to run away from us, out to the flight line where the planes were landing. He wouldn’t stop until we closed the door to the plane and rolled off. It was a tough day.
Today is my son’s 10th birthday. And this is my gift to him: A message to the universe about why it’s better for having him in it. And not by a little.
Seven years one month and 19 days ago, my son Aidan, my second of three boys, was diagnosed with autism. I got the news from my wife by phone while I sat in one of Saddam Hussein’s abandoned guard houses on the banks of the Euphrates River in Iraq. If you follow any of my writing, that’s an old story. But it’s worth saying out loud from time to time. Because it’s important to stop, take a breath and turn around to look at the footprints behind you and remember just what you’ve walked over and through to get where you are.
People don’t ask me what it’s like to have a child on the autism spectrum. Just like people rarely ask someone what it’s like to have lost a child. It sounds like a bit of an extreme comparison to some of you I’m sure. But if I showed you a video of Aidan at two, talking, smiling,interacting, and then I showed you him at three, you would understand. Because he was gone. Most of the last seven years have been a journey to find him again. I wish we could tell you that we found that little talkative, smiley two year old. We haven’t. He’s not gone any more. But he’s different. We’ve long since come to terms with it. While we were looking though, I found a few things along the way. And I think they’re worth sharing. So here they are. I hope they help.
Something happens when you realize that the burden of resources that your family requires to get through the day increases near exponentially overnight. It makes you look at your career differently. Do what you love and you’ll never work a day in your life. Find something you’d do for free and find a way to do it. That’s the type of sage career advice you find out there in TED talks and on Linked In. Here’s what I use to guide me now. Do what your family needs you to do to support them. Nothing else matters. And once you get there, you’ll find how much of the job dissatisfaction crap that we’re fed today is an unnecessary luxury that gets in the way of doing what you agreed to do when you decided to be an adult and support others. It’s an unconquerable realization.
Every once in a while, I’ll run into someone from the old days that I served with. Someone I’d been through hell and back with and lived to laugh about it over beers. No matter where I am, it always brings me a unique kind of affection. Simply seeing them puts a smile on my face that can only be explained by the fondness that replaced the fear and dread we both once lived through together. I’m married to that now. I’ve always loved my wife. That’s why I married her. But we’ve been to war together now. And back. And what comes with that is a deep friendship and loyalty that wasn’t always there. Raising a child with autism will be the violent reaction that blows you apart or binds you together at a molecular level. We found the latter. And no one can or ever will come between that.
Two thousand years ago a man taught the world a way to live. He taught that there was more to us than this life. And he taught that love and generosity towards every and all was required. And he taught that being grateful for all of it was the only way. And every day of my life and what it takes to get through it is testament to the truth and power in his words. And to me, they are proof that there is a God. And that he loves me very much.
Once you stabilize the ship in the storm, it’s time to get the engines back up and go searching for others in need. I was never a cruel or unkind person. And I wasn’t particularly self serving. But I never once felt the burning need to help others until I felt what it was like to hit the bottom, bounce off it and start to climb out. If you’re reading this and you need help, go ahead and ask. This entire site is for you.
We never found that two year old we were looking for. Because the truth was, in hind sight, he was never really there. But who was, and who is, is a wonderful, loving, smart little boy full of life and effort. He tries harder to overcome worse problems by 9AM every day than most of us will ever face in a lifetime. And every morning, when I hear his little sing song happy noises from his room, and I know he’s up and ready to get after it again, I know that I’ve found him, my son, Aidan.
Today, he’s 10.