Why? (Part 2)

Ryan died because he lived in pain, not just near the end, but much of his life, beginning before he had the words to tell me. 

Ryan died because in a capitalistic medical system, resources of research, medical education and marketing focus far more on things that create profit for corporations than those that merely save the lives of children. Our doctors know how to write prescriptions and reassure (dismiss) parents, but they do not know how to help a child like Ryan. 

The first hints of Ryan's pain and unusual neurology came early. He was 18 months old when he broke his right arm in a sensory seeking game of "spin me on mom's office chair". The surgeon who inserted the pins assured me that my son would spend days watching TV on the couch. I imagine that's what most kids do. Ryan never slowed down, never seemed to experience pain, was energized rather that fatigued by pain meds - all signs his doctor didn't know to read as indicators that he might need something different than most kids. 

The second broken arm just seven months later was a bigger hint. More sensory-seeking behavior, more abnormal response to pain. Neither the pediatrician who told me it wasn't broken (because he didn't seem to be hurting), nor the surgeon who diagnosed the break knew to tell me about sensory processing disorder. 

It was years later that other mothers pointed me to therapists and diets, doctors and diagnoses that could help him. In the meantime, he told me that his stomach hurt but never looked at all sick. He tantrumed and raged over the smallest things, but didn't know how to tell me what he needed. His pediatrician assured me that if I just stayed consistent with time out and restraints, his violence would stop and obedience would arrive. She was wrong. She didn't know to look for the unmet needs he was communicating in a language I did not understand. I'd been indoctrinated with the same behaviorism she was. I was good at consistent time outs and restraints. When the struggle continued, I didn't know what else to do.

In the years it took me to learn how to see my son and understand his needs, gluten and glyphosate were ravaging his gut and brain from the inside out. By the time I knew the things his doctors never told me, there was much damage to try to recover from. For years getting him stable, making us all safe, and finding health for him was the center of my world. 

I stripped the wheat and dairy from his diet and for the first time in his life, he was without physical pain. His therapist gave us language to describe his autonomic states and we both began to understand them. I learned to be curious instead of angry when he could not tolerate his environment. I learned that loud noises were too much from him, that movement helped, that the pressure of my body against his as I held him, not for restraint but for support, was regulating and calming.  

And so it went: supplements and swim lessons, forest hikes and gluten free birthday cakes, duck eggs and sit-down chores, piggy back rides when his knees hurt, enough activity but not too much, a sensory gym in our house, the trampoline in the back yard, tactile game pieces. Every bit of my organizational skills and creativity trying to overcome the deficits that built up in the early years when I did not know how to hear my child. 

I'll never really know how much of what killed him was what he arrived with in this world and how much was the damage that happened in those early years, but I believe that if doctors had been able to tell me what was visible when he was two, he would not have killed himself when he was seventeen. 

Ryan died because the damage was too great, because what his mainstream doctors did not know was more than his later doctors could heal.

Ryan died because we never completely stopped the pain - the pain in his gut, in his knees, in his body, the pain of not feeling normal, the pain of not being able to tolerate normal, the pain in his mind. He fought hard to escape it. His intelligence found different escapes at different times. When he was small he jumped and ran forever. For a time he read constantly. Eventually he discovered the video games that distracted him from the pain and did further damage to his brain. And then he found a final escape, one I would never have offered him, one that worked. He is not hurting any more. 

Ryan died because he was born into a society and to a mother insufficient to his needs, unworthy of his genius, ill-equipped for his strength. 

There are others like him. The world calls them by many names. They are called neurodivergent, indigo children, special, oppositional-defiant (these two used together because neither alone carries enough judgement to cover the shame of those who fail to help them). 

If these children survive, if their intelligence and wisdom manage to persist through the struggle we call childhood, if they can tolerate the pain of living in a world ill-suited to them, it is these beautiful souls who will save us all.