-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.