The father of an autistic boy with severe behaviors who needs 24/7 care moves from paralyzing fear toward a sense of purpose
The author’s son Wyatt, right, with his two brothers.
By Joshua Trainum
People would always ask me what exactly is our nine year-old son Wyatt’s condition. I would list a bunch of symptoms: non verbal, sensory-seeking, wears a diaper, self-harming, destructive with OCD tendencies. The easiest definition is low functioning autistic, but severely intellectually disabled certainly applies too.
My family has had an interesting 10 years. When Mariel was pregnant with the twins we knew from day one that there was something wrong with the baby B. He was small — twins are high risk but at our first appointment at seven weeks we were informed that something was not quite right but he could catch up. A few weeks went by and I had hope, you have such great hope for your children when you find out you are about to be a parent. I had hope when he was trending smaller in utero, I had hope when we were at the maternal and fetal medicine specialist getting sonograms twice a week. I had hope when they told us that baby B had stopped growing and the cord blood was reversing and we had to make a life and death decision. I had hope when Wyatt came out of the room at two pounds looking like a malnourished baby bird.
We decided on the name Wyatt after much deliberation because it meant little warrior. He was our little warrior. We had hope when we took Zeke home from the hospital after 18 days and had to leave Wyatt in there to fight and grow for another 2 months. I had hope that when he took to the bottle and got off the feeding tube and started gaining weight. I had hope when at five pounds we could take him home from the NICU and we had the first night all together. I had hope that we wouldn’t get such little sleep the first year because the twins were on different sleeping schedules.
He was around two when he started not looking us in the eye and just suddenly stopped meeting milestones. I knew then it was serious but I had hope when his body had a limitless desire to find stimulation that we may find help. Around three he got so big he was able to crawl out of the crib; this is when the years of sleepless nights began. Wyatt would jump and stim in our bed for hours. We used to try to get him down by laying next to his crib and rubbing him for hours so he would fall asleep. I actually think we were on mattresses on the floor because he had jumped so much he broke his crib apart. This is probably the first piece of furniture I remember him breaking, but it would not be last. We suffered many sleepless nights and I was grateful to be able to travel for work. I got to escape by going to work. There is so much more to say but my amazing partner is an absolute saint.
The Trainum family.
This is about the time I lost hope…. I knew Wyatt would be a lifelong responsibility, but when explaining our situation people would always say don’t worry they will be able to figure something out. I would probably have said the same thing before Wyatt. The fear, bitterness, anger is paralyzing. I don't know how to explain it, but it was eating me up from the inside very slowly. We had a new baby by now, and the grace of my partner and foresight to insist this was the best for my family was probably what saved us. Baby Gabe and his relationship with Zeke and how both of them are the sweetest boys is probably the sole reason I did not go down a dark path.
I was having troubles at work, I was angry and that anger and bitterness spilled over in other areas of my life. The task of getting Wyatt to have even a tiny chance of something just a little better seemed like an impossible task. We could sacrifice the well-being of our other children and pour every resource into private care for Wyatt, but to what end.
We live in an age where technology was available to save Wyatt’s life but where it fails to help him over the long term.
Despite all this, I believe I am up to the task of being a better advocate for my baby Wyatt. I love him even though sometimes he is the absolute most draining thing. We all have fires to walk through. But we can all find purpose through the pain. There comes a time in your life when you confront a reality that is so unacceptable it leaves a scar on your soul. That scar is painful, but it has forced me to confront my story and face it without fear. This has been a turning point in my life, from struggle to peace, purpose, and strength. With purpose comes vision, with vision comes community, and with community comes empowerment.
Joshua Trainum is the father of three boys. He lives in Florida.