A Journey Into Our Humanness
My son Manny is almost 28 years old, and he is deaf and autistic. For years he has engaged in self-injurious behavior, and these scars are from an episode he had late Saturday night.
Sunday morning (1 a.m. when all was quiet again), I told his father that while we often say, “people don’t know,” to express our frustration with people who really don’t know our struggle to understand this unique person and get for him the proper services and accommodations he needs — a fight that is now entering into its 25th year — “I honestly do not want people to know. I don’t want anyone to see him like this.” I sat on the bed, drew my shaking knees to my chest, and allowed a cacophony of emotions to envelop me as I tightened my entire body to shield myself from the brute force of the emotional tidal wave that washed over my body and my soul.
This journey has been difficult for our family, to say the least, but I have come to believe that it is most difficult on Manny. What must it be like for him to enter a verbal/hearing world and struggle to find his place in it? What must it be like to live in a deaf-autistic body in which your sympathetic nervous system is, well, unsympathetic? Due to no fault of his own, Manny cannot verbally articulate his daily struggle. So when he reaches his boiling point (despite the meds), he explodes and begins to beat his head, neck, and face with his fist. He tries to hit his head on a hard surface or ever so mercilessly poke at the middle of his now calloused chest continuously. Or, as you see here, he tries to scratch himself until the blood runs, similar to people who cut themselves.
Neuroscientists believe that self-injurious behavior in most cases reflects the need to find relief from the disharmony and disconnection of mind and body, which is a result of trauma. It is the only way to come back to oneself. So, “How can traumatized people learn to integrate ordinary sensory experiences so that they can live with the natural flow of feeling and feel secure and complete in their bodies?” A far deeper complex question, it seems for those with the added limitation to communicate.
Manny’s self-injurious behavior developed over time due to the failure of the Delaware school system, which refused to provide him an integrative education grounded in developmental communication (IEPs be damned) even though the schools for the Deaf and the Autistic were next door to each other and only 10 minutes from our home. Manny spent his last five years of school (ages 16 to 21) at schools in Vermont and Connecticut. Unfortunately, he regressed, and “the system” blamed us — and him. He was labeled violent, dangerous, and intellectually disabled.
But Manny is none of those things. He is a beautiful human being who wants to FEEL HUMAN. Now, how he goes about it doesn’t make sense to you or me. It does, however, explain why he retaliates against us whenever we try to intervene with the helmet and the gloves to prevent him from further hurting himself. The interventions do not deescalate the situation, but rather they escalate and prolong his behavioral episodes. We do it anyway because it is the only response we know. It seems we (Manny, my husband, and me) are damned if we do and damned if we don’t.
Which is to say, there are no answers here — only more questions. Yet as Ranier Maria Rilke stated in Letters to A Young Poet, “Be patient toward all that is unsolved in your heart and try to love the questions themselves. . . . Live the questions now. Perhaps you will gradually, without noticing it, live along some distant day into the answer.”
Hence, our journey to love our way unconditionally towards the answers continues.
Note
van der Kolk, Bessel. The Body Keeps the Score (p. 89 and 92). Penguin Publishing Group. Kindle Edition.
