Monday, November 6, 2017
It turns out that my autistic twelve-year-old son is in fact in puberty. This obvious fact was confirmed today by a specialist at the Adolescent Medicine Clinic of Children’s Hospital of Pittsburgh. The doctor held his testicles in her gloved hand and proudly announced, “Stage three.” A google search would have told me the same thing, or the dark nest of hair in the region she was examining hesitantly while he tried to shove her away. I still bathe him every day and wipe his ass after he goes to the bathroom. I am well aware of what’s going on down there. But if I somehow managed to miss those clues, maybe his seemingly constant erection at every inopportune moment for the last year might have indicated his maturation. I might have also guessed when he removed the mounted head of the trophy buck from our living room wall, straddled it and began moving back and forth surprisingly rhythmically. It was the furthest thing from funny at the time, but by that evening I admit to sending my sister a text message with only the deer and one of the choices of crying emoji’s, two pictures I never could have imagined I would have cause to juxtapose.
It also turns out that “puberty is difficult for these kiddos.” Kiddos is a default noun always spoken proudly and generally and only by professionals in the psychology or medical fields. Kiddos. It has become a way of speaking of a disability without naming it. You know which kind of kiddo you have, whether autistic or otherwise, when it is preceded by the word these. Regardless, puberty was among the facts I may have gathered from my own forensic evidence. The rage. The new OCD behaviors. The sudden and spontaneous weeping that sometimes goes on for over thirty minutes, during which he is completely inconsolable. These such episodes are precisely what led me to resume the painstaking search for a medication that might help him.
So when this doctor removes her thick, blue gloves, sanitizes her hands for the third time in seven minutes, and turns to ask me if I have ever heard of a group of medications called antipsychotics, which she pronounces like a foreign word, not proudly and confidently like she said kiddos, I nearly laugh out loud. She is not defeated by my undoubtedly frustrated expression. She suggests the Autism Center at Children’s Hospital. I tell her I have been there. Maybe a support group? Been there too. Perhaps a counselor for me? I stand and gather our things to leave as she hands me the printed Summary of Today’s Visit and says she does not need to see us back. Had it not been two hours after our scheduled appointment, negative thirty minutes from rush-hour traffic downtown, two weeks after I had desperately called to schedule the appointment on the advice of our psychiatrist, six hours after I had a lifelong mole removed from the top of my lip, which was now swollen and throbbing from Thomas’s attempts to grab me by the face in the waiting room because his patience had expired, and three hundred eighty two days after the hell of this now-confirmed puberty had started, I might have been ever so slightly more tolerant of her dismissive nature, her sidelong glance at my incision, her question, should I ask about that? and her condescending nature, complete with the I-just-want-to-go-home implication, that I’ve-seen-it-all-before smile. None of this stopped her from giving me the final piece of parting advice I had already received at the Infectious Disease Clinic, the Ear Nose and Throat Office, the Departments of Neurology, Endocrinology, and Gastroenterology, the psychiatrist, the psychologist and the dermatologist, and most recently, the psychotherapist who performed a gene swab test to help determine what medications might be best suited for this poor kiddo, who had already spent five years titrating on then off every antidepressant that ended up in the Red/No category once the swab results finally came back, a full five years after I crawled down the rabbit hole of psychotropic medications that are rumored to help some of these kiddos.
And so today for the nine hundred and fifty first time in the ten years that I have been an unwilling participant in this mind-fucking, soul-bearing, futile game of trying to help my son and to figure out what is wrong with him beyond simply Autism Spectrum Disorder, a wastebasket category for every behavior problem known to man, I declare that I am over it. I am over Autism.
No, I do not give up on my kiddo. And I have not given in, but I think it is time to search elsewhere for an answer. Admittedly, I do not know where that somewhere is, but I will gladly explore the slightest possibility of help just as rigorously as I have explored every option that has been thrown my way as I was passed hand to hand like a Thanksgiving platter around the bureaucratic table of those deemed specialists and professionals. Granted, some of them are well-meaning and well-intentioned and just as concerned as I am about this mystery, but that stands as little comfort when I look at my empty hands. When I stand in the middle of the tornado that is my living room as Thomas continues to throw anything he can get his hands on and think, This is my life.
Something happened to my son. Something long after his diagnosis at age 2, somewhere around what I cannot believe is now three years ago, something that caused enough aggression to have him “alternatively placed” at a school an hour away from our home with other kiddos who, during our initial visit to the school, seemed so much more severe than Thomas. Something that has changed his entire personality. This goes beyond autism. This is something that if it happened to a neuro-typical child, would have been examined extensively and resolved by now. Someone would have brought in someone like Dr. House to solve the mystery.
My heavy grief springs up like an unwelcomed erection just as the resident touches my shoulder as if in apology for the doctor’s arrogance. I am again consumed by sorrow and so much emotion I cannot contain it. This poor, pregnant resident who had the misfortune of seeing the crazy-haired woman with the disfigured face and her autistic son as the penultimate case of the day. My meltdown will remain unparalleled. I say that both literally and relatively speaking, giving this exam room breakdown its rightful place among those that have occurred between the walls of the many doctors’ offices, or in my car once I manage to escape.
That’s what it shall be called from this point forward in my personal narrative of autism experiences. There have been enough times I have successfully constructed a timeline of symptoms to whatever pair of eyes happened to be in front of us, darting back and forth between me and a computer, where notes are typed and stored for God only knows what reason because nothing ever comes of these visits. This is not one of them. This one will go down as a complete waste of time.
I always end up back at home, alone with my insurmountable grief, licking my autism-inflicted wounds, my poor kiddo and I left to wait for the next appointment with a hope that is quickly going limp.
Tuesday, October 24, 2017
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.