Search-and-find missions are always wrought with unknown dangers. Billy’s colonoscopy is complete and Dr. B. tells us to follow the nurse and attendants as they maneuver Billy down the hall. We walk briskly to be next to our son’s still body. In anticipation that Billy may grab and pull out the IV, his left arm is heavily bandaged like a cast. As we enter the pediatric intensive care unit, Matt and I are stopped immediately by a woman who identifies herself as the doctor-in-charge. In a polite but curt tone, she informs us that we must wait outside the intensive care unit while the medical team situates Billy in his new room. We now enter a new and uncharted territory: a new department with new personnel, new rules, and limited knowledge about autism or Billy. Understandably, the medical team views Billy as a patient. But this 20-year-old young man has autism and a communication system that demands translation. In those short precious seconds before the door electronically closes and separates us from Billy, Matt and I try to impress upon the doctor how extraneous noise, light, human movement and the absence of a communication partner could sabotage any medical objective and that it would be prudent for us to escort Billy. The doctor, however, has no questions, only directives. The attendant pushes the button, the doors slide open and Billy is whisked away. The medical staff overseeing our son’s case informs us in no uncertain terms that we must follow their protocol regardless of the fallout. This is the policy in this department. But we are not the norm. In those few minutes, we are barred from being with Billy, I am thinking that even if he semi-awakens, the staff’s medical experience will not equip them with the knowledge of how to proceed. Instead an emergency will unfold as bewildered and “alone,” Billy wills his free arm and hand to remove all foreign attachments, tape and gauze from his body. Physical restraint and medication will preempt any effort to communicate because no one knows his language system. This is my nightmare. As these thoughts race through my mind, the nurse arrives and accompanies Matt and I to Billy’s room. My instincts are on high alert and a snapshot view of the room compels me to direct. As the autism conductor, I fire out orders. “Close the blinds.” “Dim the lights.” “Speak softly or not at all.” Pediatric intensive care protocol and routine procedures are about to careen into the equally gridiron world of autism. Despite all the drugs, Billy fights to wake up and take charge of his body. They don’t understand his larger-than-life tenacity. Our objective is to keep Billy calm so that he will lie still for hours as the pellet passes through his lower intestinal tract. Despite my instructions, the doctors adjust his bed, reconnect the IV and move back and forth through the flapping curtain. They act as Billy’s wake-up call. No matter what strength, type or variation of sedative administered, adrenaline surges through Billy’s body. Billy knows. His senses are not dulled but sharpened by the noise, the lights, and the pressure of the mounds of tape on his arm and chest. This is not going as planned. With every passing hour, different doctors, different specialists peer in, concerned and perplexed by what they observe. Matt and the nurse stand on one side of the hospital bed and I stand across on the other side of Billy’s bed. Our hands are placed on Billy’s chest and arms. We are not there to comfort Billy. We are there to physically hold him down as every 20 seconds his upper body struggles to rise and break our tackle. We are his silent tormentors. Intimidation by force is the real sedative. Alert, Billy resists this assault every second and minute for four hours. With almost supernatural concentration, Billy waits to make his move. If the nurse leaves to update the chart or turns around to answer the anesthesiologist’s question, Billy surges forward. If I leave for a restroom break or if Matt relaxes momentarily his hand pressure hold on Billy’s arm, Billy struggles to make a break. It is relentless. Into the third hour, my lower back aches and my feet are leaden; I just want to get the reading. This cannot fail. The cost is too high and we need answers. We need information. But I am angry. Sedation was how we were supposed to avoid this emotional catastrophe. A concerned doctor starts to order another sedative to the existing cocktail and I yell out “no more!” I will not subject Billy to any more attempts to lure him into twilight sedation. The damage is done. In the fourth hour, they complete the readings. The mission is complete. No longer a hostage, Billy sits up and with speed and dexterity removes all the tape, pads, wires and the needle from his vein. Blood pulsates out and Billy refuses the nurse’s attempt to place a gauze pad on his vein. Billy’s blood colors the white sheets and his t-shirt. Infuriated and betrayed, Billy looks at Matt and hits him on the head. Power, remorse, humiliation, and an incendiary rage blanket his face. Matt holds Billy back and gently says “No.” We feel obliged to reassure the nurse that all is well and Matt and I thank her for her exceptional help. She tells us to take our time. Billy can stay as long as he needs. We are alone. It is dusk. The light softens outside the large, square glass window. Billy sits on a built-in alcove vinyl seat that almost spans the length of the wall. I give Billy a pillow and our green afghan and encourage him to rest. But he will not rest. Instead, he rails against what he doesn’t understand. His wails are loud and deep. Matt and I silently ache. No one ever told him what would take place after the colonoscopy. We were assured that Billy would remain sedated and thus relaxed as the pellet passed through his lower intestine and the x-rays were taken. By all accounts, this medical process would be seamless. That was the plan. It didn’t happen that way. Sitting on the bench, Billy faces the truth as he reviews the information on his device and evaluates the information he never received. As dusk becomes night, we cannot comprehend wholly what just took place for Billy, for us, and for our family’s humanity.
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