“All done hospital.” “All done hurt.” “All done blood.” “All done.” Isaac made it home, and these were his words. I think I understand: he never wants to go back. The night he left, an army of emergency personal had marched into our home at 2am. They headed to the basement where a battle was being fought. The battle did not pit Isaac against Brian and me. It was a fight to keep us all safe from the parts of autism that make us all want to resist its grasp or flee.
When Isaac came home 24 hours later, we were not sure what to expect. After many tests, Isaac had a clean bill of health. It was helpful to know that the intensity of our experience stemmed from one source—his severe neurological and developmental disorder. One of the problems with this, however, is that autism in general is not well understood. There are no medications that address the root causes of this condition. The root causes themselves continue to elude scientists and medical professionals. Gratefully, there are medicinal and therapeutic options for us to continue to experiment with which address the behavioral effects of the disorder. But, there is currently nothing available that can work to heal or help the parts of the brain and body that function so poorly as to create extreme distress manifesting in extreme behaviors. I have known this for years. But the reality of our limited options hits me differently now. Now we are faced with a new kind of suffering. To help alleviate his suffering, it seems we first need to understand it. Autism both causes suffering and blocks us from understanding its true source.
I looked at my Isaac, now home. He still wore his musical instrument pajamas from “camp cousin” last summer. Guitars, pianos, accordions and drums danced across the soft black fabric. Isaac loves musical instruments. And he loves these pajamas. As I watched him, he did something he had not done for a long time. He went and sat right next to his weary father on our gray-blue sofa and laid his head on Brian’s shoulder. I looked over at them both, completely exhausted from this ordeal. Brian gently placed his hand on Isaac’s leg and closed his eyes. It was tender. I felt a trickle of hope seep into my heart as I looked at my good husband and our good son. Maybe we could turn the page. Maybe we could shift our trajectory a bit here. Maybe there was hope for a more peaceful baseline existence. Surely God would guide us to a path leading to peace. Perhaps we were already walking in the right direction although our desperate attempts to help our son often felt aimless and futile. Perhaps this part of our story—where the answers and outcomes we seek are not readily forthcoming—the parts of our story that I have wanted to skim through or skip entirely are actually crucial to the goodness of this particular tale. I hope our current chapter will someday become beautiful to me as I look back and see the weaving miracles that brought us through to the other side more complete and knowing and holy.
Weeks roll by. Isaac’s intense desire to remain out of the hospital seem to have had an effect on his ability to recognize mounting dysregulation in his own body and then to find strategies to help himself before things escalate to a place where all control is lost. It’s given us an “in” that we haven’t had before. We are able to work on helping him name emotions and understand coping strategies. He is more receptive to our attempts to help him learn. A few days ago, I watched him get angry. With a picture chart labeling emotions with words and cartoon faces, he was able to tell me that he was indeed “angry.” And that he was also “tired.” He was starting to lose control. But he was still in a place where I could reach him and where he could reach back. We sang songs about monkeys jumping on the bed and old Macdonald on his farm. We jumped up and down. We took deep breaths. And he regained control. I was so proud of my boy.
A question was posed to me the other day as I knelt in prayer. It gently entered my mind and settled there for a while: “Do you believe in Isaac? Do you believe he can handle his autism?” It gave me pause. I believe in God. I believe in His healing and help and I believe in ultimate relief from this and all affliction in His time. But what do I believe about Isaac right now? Do I believe in him? Before the ultimate healing and relief come, do I believe he can do this autism thing? I had never really considered this before. In my mind and heart, I generally circle around my yearning to take away all the suffering and sorrow and confusing parts of autism that make it so hard for him to connect and learn and be comfortable and free. But what if his autism is helping to shape his soul in ways that I don’t even understand? So, do I believe in Isaac? I decided: of course I do. He can do this. He can wake up every day and face autism, and work with and through autism, and find his own pockets of joy and rejoicing. He can learn things in his autistic body that will shape his soul in beautiful and eternal ways. I believe in Isaac. He’s got this. And Jesus has Him.
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