-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”