Sometime between the ages of two and three, my older sons were able to speak well enough to tell me what hurt or why they were sad. They might not have had all the words needed, but the words they shared gave clear and helpful clues. I remember feeling relief that they could help me identify the source of the pain so we could take steps to relieve it. Alas, in Micah’s case, between the ages of two and three his words began to decrease rather than increase; thus began the frustrating ongoing quest for the source of pain when he is unwell, agitated, or seems sad.
This quest has seemed like an unending detective mystery, with all clues carefully examined; medical concerns shared with his doctor; and then with his input the best treatment(s) applied by trial and error. To his credit, Micah’s doctor has been extremely gracious in listening to my concerns, eyeballing Micah in his office, and brainstorming about possible treatments for what possibly might be the underlying cause of his illness. Fortunately, Micah is generally healthy, but there have been some scary misses of the correct diagnosis over the years.
The most frightening miss was when his appendix ruptured when he was seven. Studies of people with autism show a higher percentage of deaths from appendicitis than in the general population. Those studies do not surprise me as we came close to losing Micah while we searched for the cause of his illness. When Micah showed signs of not feeling well we took him to his former doctor who suspected a viral infection. He sent him home with the expectation that he would be better soon. He was not. We watched him continue to silently regress until his aide Kim tearfully said the doctor had to be wrong, so back we went to the same office, with the result that he was hospitalized immediately as the evaluation determined that his appendix had ruptured and the poison was rapidly making its way through his little body. One might ask, how did we miss the signs that he was getting close to death? One answer, besides the obvious fact that he could not tell us, is that Micah must have a very high tolerance to pain. The surgeon who operated on him for the second time (due to the fact that the first surgery for his ruptured appendix led to a life threatening secondary infection), told us that she had operated on grown men with a similar level of infection who did not survive. Thankfully, his high tolerance for pain accompanies an inner strength to fight. Survive he did, despite having to have his arms tied down so he would not pull out the IVs after his surgeries. And we, his family, survived his five weeks in the hospital, swapping places besides his bed so we could provide comfort and a voice for his needs as the medical staff led the fight to keep our silent son alive.
Less dramatic, but equally frustrating was watching him scream and grind his hands into his head when he began to have migraine headaches. The diagnosis of migraines was an educated guess as his father and his older brothers had all experienced painful headaches starting in preadolescence. Their histories of the symptoms leading to the onset of the headaches as well as their descriptions of the intensity of the pain and what helped them while they waited for relief were the best sources of information of how to help Micah. Their histories also give hope that, with time, the headaches will decrease. Although for Micah, they seem to persist, although less frequent than in the past. The medication for his migraines works best if given at the first signs of a headache which is complicated by the fact that if asked what hurts, Micah always points to his head. The dance becomes a desire not to over- medicate for what might not be a headache at all, and the desire to ward off the terrible pain of a migraine. I confess that I err on the side of giving him the medication if I suspect the onset of a migraine, thus doing my part to help the thriving pharmaceutical industry, but hopefully sparing Micah some pain.
Emotional pain is even harder to diagnose and treat. Micah is physically quite strong and has a history of using his strength to grind his hands into his forehead when he is upset. It is a challenge to calm him when this happens and he generally ends up with a red, raw forehead and sometimes bloody cuts on his face and hands. The pain or frustration that triggers these outbursts might be alleviated if we could help him find the words, but for now, the words are not to be found.
Like everyone else, Micah has been impacted by the pandemic, but with some unique challenges. Micah, like many with sensory issues, cannot tolerate wearing a mask for long. To keep him safe, this has necessarily made his world even smaller. For years one of his main goals has been to increase his social skills, to counter his natural tendency to socially distant from others. Yet today, the goal for everyone is to practice social distancing. Since the pandemic took over our days, every time Micah sneezes or coughs brings a wave of fear that I might be missing a symptom of the virus. Thankfully, he has remained fever free, but he did go through a period of a few days when he ate very little and only wanted to be in his room in bed. The search for clues of illness during those days was futile, however his brother Ben wisely noted that Micah was most likely depressed. Given the changes in his routine and the fact that one of his favorite people was no longer coming to see him due to the pandemic, that diagnosis was most likely spot on. Hopefully soon, Micah can return to his volunteer work, art classes, and swimming at the YMCA. Like all of us he must yearn for a return to “normal”.
I often wonder what Micah would say to me if he could. I continue to pray for him to find his voice, even if his first words are to ask me to stop talking for him. If that day comes, we will celebrate a miracle. Until then, the quest will continue to find and treat the source of his pain, be it physical or mental, with the goal of freeing him to live his one life to the fullest.
Jan Lessard Peightell, July 23, 2020