About a year ago, our boy began experiencing intense bouts of dysregulation climaxing in extreme, irrational violence toward himself and others attempting to keep him safe. Even though we had consulted with medical professionals and behavioral professionals, we were not offered the information, guidance, or tools we needed to deal with the extreme rage and intensity of Isaac’s panic. There is so little that is understood about autism. I had a strong feeling that the tsunami like episodes we were enduring were like unto panic attacks—an extremely dysregulated nervous system where he was irrationally driven to “fight for his life,” but we had no reference point as to what was really happening. We were all left bruised, bleeding and reeling from the intensity of these waves of irrational chaos wondering when the next one would strike. Safety became a very real concern. In the midst of this storm, my research led me to the term “autistic meltdown.” We finally had a name for what was happening. We gratefully found published resources where verbal, diagnosed individuals were willing to share their experiences when in this extreme state. We finally gained some understanding of what was happening for our sweet Isaac. And it was and is heartbreaking. “An autistic meltdown, also sometimes referred to as an autonomic storm, is a reaction to feelings of intense overwhelm, distress, or dysregulation…[it is] not a conscious behavior that can be changed, but rather an uncontrollable response to overwhelming feelings; a physical reaction to an overwhelmed brain. Too much information from sensory or cognitive stimuli triggers the autonomic nervous system, which then signals to the brain that the person is in danger. This results in behaviors of distress, which can manifest in a variety of ways.” (Reframing Autism: All About Autistic Meltdowns: A Guide for Allies, 22 Feb 2024).
As I was praying one morning, trying to express my feelings to my Father in Heaven about our current wilderness, the image of a well came to my mind. I felt like I was at the bottom of an endlessly deep well with slippery moss growing on the cobbled walls. Isaac was down there with me. There was muddy water at the bottom, and we waded in it together. If I strained my eyes upward, I could make out the promise of light. Randomly, I had a spoon in my hand. We were both hurt, dirty, and crying. As I thought through my predicament, I considered my options: I could put Isaac on my back and try to scramble my way up the slimy, mossy side of the well toward the light. Alternatively, I could hold Isaac cradled in my arms and jump with all my might toward the opening. Or….I could take my spoon and start digging a tunnel through the rock and muck to get out that way. In my prayer, I continued to cry out in desperation to God: I was in a heartbreakingly impossible place. We were hurting. And we had no way out.
Since this desperate prayer, I have continued to reflect on the intensity of our dire need, and my own puny capacity to save us from this trouble. As we continue to wade in these boiling waters, I have come to more fully internalize the reality of our total dependence on Jesus. It has rested on my heart that He alone has the capacity to not only save us, but to turn our personal dungeon into a sacred space. In this place of extreme need, I am learning how to trust Him. It is clear I am incapable of fixing this—the intensity of my son’s suffering, my inability to communicate with him about his experiences—to gain understanding from him about what is happening or how I can help. I can’t even hold him to comfort his straining and trembling, sweaty body. Or tell him verbally that I love him and that everything will be ok without fear of triggering further overwhelm. But I can trust the “Master of ocean and earth and skies.” The “Healer of our souls.” I can trust Him.
Matthew Holland spoke poignantly profound words that have touched my heart in such a way that I have felt compelled to return often to them as I continue to contemplate the purposes of mortal suffering. He said: “I witness to you that through the staggering goodness of Jesus Christ and His infinite Atonement, we can escape the deserved agonies of our mortal failings and overcome the undeserved agonies of our mortal misfortunes. Under His direction your divine destiny will be one of unparalleled magnificence and indescribable joy—a joy so intense and so unique to you, your particular “ashes” will become beauties “beyond anything earthly.” That you might taste this happiness now and be filled with it forever, I invite you to… let your mind catch hold on the exquisite gift of the Son of God…” (The Exquisite Gift of the Son, General Conference October 2020)
And so we face the storm with Isaac when it comes. We trust that it will pass. Then, we dress our wounds and savor the calm as it rests upon us. And we wait. We listen. And we follow Him, ultimately trusting in the design of His Masterful Plan.
*Note: We continue to research and pursue help for Isaac through medical and therapeutic professionals as well as pursuing medicinal support for him.
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