Originally published in HerWord.com on November 24, 2014, link here.
The first time it happened, Alphonse was barely two years old. Before that day, he had been a happy, if a little “distant,” toddler, and were it not for the diagnosis of classical autism a few months earlier, we could have happily gone on believing that the road to recovery would be a smooth and easy one. When you’re young and naive, I guess you can almost believe your own hype about being a supermom, the one who can fix anything, even autism.
That day, Alphonse was strapped to a hospital bed and tethered by an IV line. He had had an infection raging inside his lungs for days and forcing down oral and rectal medications had become a losing battle of wills. He screamed and shrieked like a howling banshee, only to withdraw and whimper pitifully when we touched him. He struggled and fought desperately, his eyes betraying that wounded animal look we would get to know so well over the years. But he was small, and just barely two, we had the edge when it came to strength and physical power. And so, I imagine, feeling helpless and wanting very much to escape, he did what his mind thought was the logical answer to his woes: he started to bang his head.
It started with one loud thud as the back of his head connected with the headboard of his hospital bed. We all turned around to look for the source of that alarming sound, and before we knew it, he had seized upon the idea of hitting his head with so much zeal that his eyeballs started rolling backwards in his head. We panicked.
The next few days became a whirlwind of anxious anticipation. Only one thing could happen at any one moment: he would hit his head on the walls or we would physically stop it. Most of the time, he won; he was that fast. The times we did, however, he started diving, head first, from the bed to the cold, hard floor. We hardly slept a wink then.
These self-injurious episodes would come and go over the years. The themes would vary- sometimes it would be head banging- hitting his head, face and ears against walls or his fists; other times it would be teeth-or cheek-bashing, the former the cause of his permanently chipped right incisor; or it would be scratching and gouging of his skin till he drew fresh blood. And although they were actually less common occurrences than the daily, gut-wrenching aggression we lived with for years, these episodes were so severe that it was, in fact, easier to bear with violence directed towards us than to see him beat himself repeatedly.
It is estimated that roughly a third of all individuals with autism and severe intellectual disabilities exhibit varying degrees and types of self-injurious behavior or SIB. The causes of this behavior may differ from person to person, but it is telling that this affects the more severely affected individuals in greater proportion than those who are able to function better socially and cognitively. This most devastating behavior is responsible for limiting the individual’s access to the world around him as the potential consequences include not only permanent injury or death, but isolation from the community, as well.
I write this today as we deal with the aftermath of his current self-injurious phase. After weeks of hitting his head, his right ear is swollen and infected. There is blood pooling in his outer ear, stretching it taut and deforming it. The doctor diagnosed it as perichondritis, an inflammation of the cartilage in the ear and a complication of perichondrial (ear cartilage) hematoma. Laymen know it as boxer’s ear or cauliflower ear and the condition is seen in prizefighters of wrestling, boxing, and full-contact body sports. While it is regarded as a badge of courage for these sportsmen, for individuals with autism and other developmental disabilities, it is a chilling reminder of the difficulties they face as they try to adjust and thrive in the world the rest of us live in.
Behaviorists teach us that behavior always has an antecedent and a consequence. When I reflect upon all the changes our family has been through these past months, I can understand how this particular behavior reappeared after years of being controlled. That these all started when my dad passed away is particularly significant in its proximity to the onset of these events. Then, our house was in shambles from my parents’ move and our routines were scuttled by the long, necessary days at the hospital and, thereafter, the funeral home. Even today, as we struggle to find normalcy in our post-Daddy lives, what we were before July has become vastly different from what and who we are now. Alphonse must be hurting and grieving, too, and unable to express these, he lashes at himself, perhaps to relieve his sorrow, perhaps to vent his rage. Moreover, it didn’t help our cause when his teacher of more than a year left to pursue other employment opportunities last month, leaving him feeling abandoned and more bereft in his sorrow.
Any change in our environment, family dynamics, schedules and routines can provoke a reaction, we know this only too well. Often, we are able to head off emotional distress successfully and he turns back into his happy self. Regrettably, this is one of those times when we have failed to protect him completely.
We’ve taken all necessary precautions for his protection as we work to redirect his self-injuring energy. Padded cushions of foam mats have been placed on the walls at (his) head level. Where he sits at the dinner table, a plastic corrugated board is duct taped at the edges of the table and glass top to prevent the sharp edges from cutting into his skin. (He has already sustained a laceration on his forehead from hitting it on this edge.) Comforters and other thick beddings cover hard spaces he could get into. Additional foam mats are mounted and spread all over the house- in the bathroom, in the kitchen, in the bedroom- all designed to give him a safer space to move in. Unfortunately, despite our best efforts, we still cannot protect him from his own fists, and this is an egregious failing that continues to nag at our conscience.
It is extremely difficult to be calm when your child intentionally hurts himself. Still, in these many years, we have learned that it is best not to panic. In truth, we have only succeeded in masking our pain with a seemingly confident assurance that all will be well in the end. Left to our own thoughts late at night, we sublimate our sorrows, busy ourselves brainstorming more ways to keep him safe, and then get back to the real hard work of doing so.
Under “normal” circumstances, the treatment for his ear is simple and can be routinely done even in a doctor’s office. But given his history of aggression, his unusual strength, extraordinary reactions to stress and change, and aversion to medical treatment, this simple procedure of draining the ear will have to be done in an operating room and under general anesthesia. I wish we could spare him of all these troubles, but the option to continue conservative management has been lost. There is nothing else to be done but to stop him from inflicting more damage to himself.
Despite all these setbacks, we are confident we can hurdle these latest lows in our autism roller-coaster life. Although we have lost the sense of peace we value so much in our home, what we have in abundance balances this loss: the determination and vigilance to keep him safe at all costs. With your prayers, dear friends, we will overcome.
We did it before; we can do it again.