Our Family Secret
Updated: Jan 5
Self injury. For 40 years of my life I had no idea that there are children who beat themselves until they bruise and bleed. These children do this because they are in pain. They do this because they are desperately trying to tell us something is wrong and the words don’t come out. They do this because the pain they are inflicting mask the pain they are feeling. They do this because their brains crave sensory input or have too much of it.
The first time my son hit his head against the wall was in February of 2014. The horrific memory is etched in my brain and haunts me till this day. Just the week before I was researching new therapies for my son Jack. Jack was 7 at the time. He has autism, developmental delay and cerebral palsy. For months leading up to this I felt Jack’s developmental progress had plateaued. I was looking for some new ideas and stumbled across a video that took my breath away. The video was of a child with autism hitting himself in the head with what looked like super human strength. His mother sat on top of him, using all of her strength to hold his arms down to stop him from seriously injuring himself. She was sweating and sobbing. Little did I know this was my future being introduced to me.
I walked downstairs and showed my mom the disturbing video. She lived with us to help with Jack’s care. As she watched in horror, I said “At least we aren’t dealing with that situation." I remember the look on my mom's face. She had obviously never seen anything like it in her 70 years. Unbelievably heart wrenching. You imagine a child with a neurobehavioral disorder possibly attacking their parents, therapist or friends out of confusion or frustration, but never this. Never themselves. I had never seen a person, much less a child, physically beat himself. Neither had she. I had never seen a mother’s face look like the one in the video. She had a foreign expression of pain mixed with exhaustion, helplessness and utter sorrow. I watched the video several times. It was difficult to watch but it made me thankful that we weren’t there. The things I thought were hard about
Jack's disabilities didn’t seem as hard after watching that. I could handle more sleepless nights. I could handle my 7 year old not walking or being toilet trained. I could handle him losing language and cognitive skills. As long as I never felt the emotions on that mother’s face. My heart broke for her. I cried. And then I moved on with my night, feeling a slight sense of relief that I wasn’t her. Fast forward a week. I was in my bed reading. My son Jack was on the floor in the hallway outside of my room. I was watching him, making sure he didn’t get too close to the stairs. He had fallen down the stairs before so I was on edge, worried that it would happen again. Jack was a happy child, especially considering his limitations. He couldn’t walk or communicate very well but he was always in good spirits and never seemed to complain. But on this day he seemed off. He appeared to feel uncomfortable in his own skin.
He was playing with a squishy ball with tentacles like he always did. He would flip it back and forth over and over again for hours. And then it happened. Our lives changed. He put his hand on the wall as if to see how hard it was. He knocked it several times with his hand. Next, he leaned over and knocked his forehead on the wall. The first time was just a tap as if he were testing it to make sure it would hurt enough. And then he did it. He leaned back and slammed his head into the wall with an enormous strength I didn't know he had. And then he did it again. And again. Each time harder than the time before. From that moment on I would never be the same. It broke me. I felt physical pain in my heart as if with each head bang someone was repeatedly punching me in the chest, taking my breath away and I couldn’t get it back. I jumped up and screamed at him to stop. "No, what are you doing? That hurts you. Please don’t hurt Jack.” My heart crumbled when I saw the look on his face. His expression was a mixture of pain, guilt, misery and worst of all, a desperate plea for help from his mama. The hardest emotion I've ever felt as a mom is helplessness and the helplessness I felt at that moment brought me to my knees. Not knowing what is wrong and how to help. Seeing your child in such pain and distress and not being able to understand why or how to make it go away. Seeing this precious child destroying himself. The weeks, months and years to come were a living hell. The episodes became more frequent and the injuries he inflicted on himself more severe. Meanwhile he continued to lose language and skills and was not responding to therapy. On any given day he was covered in bruises, particularly on his temples, where he tended to hit the most and the hardest. He bit his hands so hard that they always had bloody teeth marks and open wounds on them. I knew he was in excruciating pain. A mother knows.
Jack had x-rays, scans, ultrasounds, bloodwork, psychological evaluations and ER visits with no answers. Some doctors would tell us this was “just autism”. Others believed me, even cried with me, knowing he was in physical pain and tried desperately to figure out what was causing it with little luck. We had to pull him out of school because the episodes became too violent for his teachers to handle. We kept it to ourselves, shielding our friends and family from the horrific sight, knowing there was nothing anyone could do to help and attempting to protect some inkling of Jack’s dignity. We were in survival mode, too lost and exhausted to accept help other than meals dropped at our door by dear friends. We mourned for Jack's childhood and the lives we once knew, not even being able to do things like pick up our daughter from school, knowing her precious brother would have a violent, dangerous episode in the carpool line. The only way we could get Jack to stop beating himself for moments at a time was by driving him around in the car. So we drove and drove and drove. We took turns driving all day and all night. Often it required two of us in the car. One of us would drive while the other would attempt to sleep in the back seat with Jack, ready to wake up at any moment to hold his arms down and his flailing body still. We were always hoping and praying that he wouldn't hurt himself so badly that we would have to go back to the ER once again.
We did this for years. I have compartmentalized the specifics of those darkest days and rarely go there because it’s too painful. It's too painful to think that there were days I wondered if Jack and I would both be better off dead because he wouldn't be suffering like this. As time went by, with the help of other autism parents and professionals across the country, we found a brilliant, experienced and compassionate doctor who not only listened to us, he listened to Jack. Finally. He listened to Jack's body language. He listened to the pain he saw on Jack's face. He listened to me. He spoke to Jack and told him he knew that he was in there and that he was hurting. He told Jack he wouldn't give up on him until he figured out what was wrong and helped him feel better. He discovered that the pain must be stemming from ulcers and inflammation on Jack's intestines. Unfortunately, the initial treatments didn’t work but over the years and with the help of more amazing doctors, we gathered enough tools to ease his pain. Jack still struggles with self injurious behaviors but they are less severe. Out of habit. he still uses them to tell us when something is wrong. He will hit his legs and bite his hands to let us know his senses are overloaded by a sound, movement, pain or a difficult situation he is in. To us, in comparison to what we saw in the past, these behaviors are mild. However, to someone who has never seen a child with self injurious behavior, I am sure it is still quite disturbing. Of course we work endlessly with him, attempting to help him learn other ways of expressing himself but it's no easy task, even with the best therapies. The bruises on Jack’s head are now gone but the scars are there to remind us to always listen. Listen to him and listen to each other. They remind us that listening isn't always done with our ears. Sometimes listening means watching, paying very close attention and trusting your instincts when the words aren’t there to hear. This is why I am sharing our family secret. Sometimes it's not “just autism”.