Tuesday, October 24, 2017
Ten Years After Autism Diagnosis
Ten years since the autism diagnosis. Ten. Years. A full fucking decade. I have aged threefold. I am baffled and broken but no closer to an answer than I was when we started this journey. I believe I believe I believe, I repeated over and over as if faith could function like magic. If I just prayed hard enough a fairy godmother would appear to grant my wish. Heal my son. Or give me his pain. Hurt me for my own mistakes, but he has suffered enough. In truth, I could just as easily have meant I have suffered enough. Either way, my prayers soon turned into an angry soliloquy, a version of the rant I I have said more than once before. Leave him alone now, you son of a bitch. What kind of monster would hurt an innocent child for things his mother has done? I have done all that you asked. I have tried every potential solution you have given me. Every medicine. A special school. Holding out. Holding on.
I cannot hold it in lately. The rage keeps bubbling over at the most inopportune moments—when I’m packing lunches or standing in the middle of the mall starting at someone else’s son as he sings his ABC’s. Then there it is. Fuck you, brat, I think. Sometimes I actually say it under my breath, but only after the tears start. Before that, I know he is almost as beautiful as my Thomas, the boy who existed before autism swallowed him whole and then came back for seconds, consuming our entire family in the process. Goodbye marriage. Goodbye normal life for my older son. Goodbye career. Farewell sanity.
What the hell was I thinking when I imagined a time when he would be okay? How did I even entertain that possibility? Why didn’t I foresee this outcome, the one where my son continues to devolve into an obsessive compulsive catatonic anxiety-ridden mess of a child? Which is the worst? The teeth grinding so hard the eyes of strangers squint, or the clawing at his own eyes? Is it the screaming on repeat as loud as possible, or the intentional gasping so horrible and desperate it stops me in my tracks every time? Which symptoms do you want to target? You treat one and see what’s left, Dr. Second Opinion said last week in his office.
I unfolded my hands and got up from my kneeling position, still remembering how hard I had slapped Thomas’s hand when he shoved it in my mouth, his newest compulsive precursor to aggression. Before this, it was a voice we called Creepy Baby, in which he would repeat “Look out!” then attack whoever was nearby. At 12, he responds better to the simple, dog-training commands than he did at 2. “No!” I shouted. “Stop!” I watched him feel then accept what we would call a sting. He shudders, something I have never seen him do, and I am filled with regret, overflowing with it. It is the second feeling that has become all too familiar in my heart in the last six months. I regret everything I did not do to make him turn out better—the diet interventions, the stricter consequences, the abstinence from electronics, every strategy I did not try in exchange for the ones I did, the ones that failed. More than anything, I regret the last five years I lost medicating him with the wrong drugs. I regret every doctor I did not see in every state I did not drive to. I regret the tests I have not heard of or been told to try. I regret the vitamins I rejected. I regret the moments I took for myself instead of giving to him.
Because no matter how much you justify protecting your sanity, getting by day by day, you cannot go back. You cannot do it over. A day becomes a year becomes a decade. Until you find yourself on your kitchen floor begging for a second chance you know will never come.
My two common feelings, rage and regret, combine to form a very specific pain not unlike grief. It is a pain that has outgrown me. I am completely overcome by its weight. I have reached a point where I fear I can no longer write it. For ten years, the only answer I have ever found semi-believable to my request for a why is that maybe I am meant to endure this so that I can write our story, tell the world of the struggles of raising a child with autism. I have some 300 pages chronicling milestones and setbacks, love and let down, beauty and pain. But for the last years it has all hurt so bad I can no longer separate one event from another, tie one medicine to a specific symptom, one behavior to its corresponding consequence. He just keeps getting worse, I have said so many times to so many people. There is no shape to our narrative, no ending from which to draw a message. The pain surrounds us like shattered glass. I cannot possibly pick up all the tiny pieces to put it back together, glue one shard to the next to form a cohesive story, a whole, a window I will look out of, a mirror for others to stare into. And I need this story, at least the one that traces his recent regression over the last two years, a story I can repeat to the doctors at our next psych eval at a hospital five hours away, even if I don’t yet have a story I can tell the world. Even if I never do. If I say it all correctly, maybe I will get the right medicine.
For now I only know that this hurts as much as I imagine it would if my son had died. In some ways he has. We both have. I have lost my little boy to autism, just as he has lost me to rage and regret. I need to face that there will be no miracle for us. Time has run out. At his age, I no longer speak of the possibility of a cure.
I have memories of Thomas laughing and smiling, glowing with an air of something miraculous, reciting his ABC’s in the mall while a passerby undoubtedly watched in awe. His lack of intention is beautiful. He wishes to affect no one. He simply is. These memories have that nostalgic aura of dreams of dead relatives. Those dreams where just as you realize you are in the presence of someone who is gone, you reach out to grab them, to savor the moment, and they disappear or you wake up, bathed in grief and loss that feels too heavy to carry alone. But Thomas is not really gone. Sometimes I think that would be easier. He is right there in front of me, yet I can remember the person he used to be, much the way I remember former versions of his older brother as he grew into a young man. Each version bares semblance to its predecessor. They could fit inside one another like Russian nesting dolls. If I take them out and line them up, I can trace an evolution. It hurts, but it does not sting. I guess that’s because just as I can find little things that I miss about the version that has evolved, I can find new things to love about what he has transformed into. Not necessarily so with autism, at least not whatever horribly regressive type we have. This is not evolution. This is loss.