This is not a beautiful, feel-good piece about special needs parenting. I wish it was but it isn’t. This is a brutally honest description of what my brave child and my family are going through. I have tremendous hope that this piece will have a happy ending one day but we aren’t there yet. I’m choosing to tell our real, raw story because it isn’t fair to my son to sugar coat his suffering. It isn’t fair to me, his dad, his younger sister and his grandmother to plaster a smile on our faces and hide the heartache and stress we feel watching him suffer. Most of all, I’m telling our story because I know there are families out there dealing with similar situations and I want those families to know that they are not alone and there is hope. People rarely talk about the devastating comorbid conditions that can sometimes affect a small population of people with profound autism and associated disorders. It is kept quiet because there is a stigma attached to parents who don’t celebrate every aspect of their child’s neurodiversity. This silence made our darkest days even darker. I don’t want anyone to feel as alone as we did for so long.
My son Jack’s background story is a novel in itself. His almost 15 years have been a roller coaster of experiences that no child should have to endure. There were and still are many happy times but sadly, the difficult times have stolen much of his childhood.
After a heartbreaking stillbirth and multiple miscarriages, Jack came into our world fighting for his life. He won and the joy we felt was indescribable. We didn’t know what the long term effects of his traumatic birth would be and we didn’t care. We had a baby to take home and love and we were certain we could handle whatever came with that.
Because of his complicated birth, it was no surprise when Jack began missing milestones. By age 6 he was diagnosed with cerebral palsy, developmental delay, autism and a host of other medical issues. We were thankful that all of his diagnoses appeared mild. He was a happy kid who faced his challenges with bravery and often a smile on his face. He loved being with friends and family, swimming, red trucks, watching Barney and mowing the lawn with his dad. He was by no means a typical child but he enjoyed life. We adored and appreciated his bizarre sense of humor, neurodivergent brain and sweet innocence. Things weren’t always easy for Jack but as a family, we always managed to find the silver lining.
And then something happened. I wish I could say what it was but I don’t exactly know. Jack began to appear uncomfortable in his skin. He could no longer tolerate the sounds, sights, smells and movements in the world around him. He lost skills he had worked for years to achieve. He was not able to enjoy the things he once loved. He was in a constant state of fight or flight. The look of pain and panic never left his body.
And then he began to hurt himself.
It started with some head banging and hand biting and rapidly got worse. Before we knew it he was giving himself black eyes, bloody open bite wounds and bruises from head to toe from flailing his body against whatever he could find. He did it with such strength that we feared we would break his bones while attempting to stop him. It became obvious that these were not typical autism related sensory meltdowns or fits of frustration due to communication challenges. There were no outward triggers. For about a year the dangerous behaviors were practically non stop unless he was riding in the car. Something about the movement of the car gave him a slight sense of relief. We rode and we rode, his dad and I often taking turns driving all night while the other slept.
Meanwhile, we were searching to the ends of earth for answers and relief for our suffering child. Jack was not able to communicate with us about what was bothering him so it was a guessing game like no other. All we knew is that something was terribly wrong. We tried behavioral therapies, appointments in every pediatric specialty, scans, ultrasounds, scopes, spinal taps, integrative medicine and endless lab work. He tried no less than 20 different pharmaceuticals. Nothing helped. Many of the psychiatric medications only made him worse. Needless to say, our own mental health began to suffer as well.
After a few hellish years and still no answers, the behaviors subsided to a manageable frequency but until this day they are far from gone. We have learned to live with it and find happiness in the midst of pain but it is not ok. There is nothing more heart-wrenching than watching your child uncontrollably beat himself. We can usually calm his dangerous behaviors in the quiet, familiar privacy of our own home but taking him anywhere is quite traumatic and unbearable . The behaviors are so dangerous and intense that we have yet to find anyone we are comfortable leaving him with except for his grandmother who lives with us to help us carry the load. In a sense, we have become prisoners in our own home; missing holidays, vacations, weddings, funerals, birthdays and quality time with family and friends. Self-injury holds us captive.
We have settled into this life but we do not want to stay here. Recently my 3 am anxiety ridden google searches led us to a glimmer of hope. Thanks to one brave mother speaking out and a handful of brilliant doctors thinking outside of the box, we are cautiously hopeful that Jack won’t have to suffer with this pain for the rest of his life.
A recent increase in the recognition of agitated catatonia in autism and related disorders has given us a possible explanation for Jack’s many years of global regression and severe self-injurious behaviors. How strange it feels to hope for what many would consider a devastating diagnosis and to feel such excitement when the doctors say, "We think this is it." The treatment for catatonia is not for the faint of heart but neither were the past seven years of my son’s life. We did our research, met with specialist and learned that continued electroconvulsive therapy (ECT) under anesthesia is the only proven treatment for drug resistant catatonia and has shown remarkable results for many with intractable self-injury. Honestly, deciding to move forward with ECT was the easiest decision we've ever made.
So here we are, exhausted and broken, on the brink of what feels like our last but most promising glimmer of hope to improve life for the little boy I love more than life itself. Stay tuned because I have no intention of staying silent about this any longer.