-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.