Each May is Better Hearing & Speech Month, a month designated to spread awareness and educate regarding communication disorders and the services provided by Speech-Language Pathologists (SLPs) and Audiologists. This year’s theme is Communication: The Key to Connection. In honor of Better Hearing & Speech Month 2017, we are privileged to share this essay written by an AAC Parent. It is raw and revealing. It serves as a good reminder of the importance of presuming competence and of making an effort to use an individual’s communication system to connect with them. It highlights the need for continued education regarding non-verbal individuals and augmentative and alternative communication. Communication is indeed key to connecting. And everyone is worthy of the time and effort to connect with them.
by: Guest (parent of AAC user)
Last October, my son was seen at Children's Hospital for a lower leg tendon release consultation. Having researched the relatively non-invasive procedure, I was expecting to schedule a routine day surgery with a physical therapy follow-up and minimal down time. Sure, it would be a hassle, but in the scheme of things no biggie. After numerous sets of ear tubes, two blown ear drums, tonsils, adenoids and an all-day cringe festival involving a poorly placed catheter and testicular electrodes, I wasn't overly concerned. Then a doctor entered and promptly addressed my son, “Hello, Alexander. I see that you're 13 and in the 8th grade. Is that correct?”
“Alexander is non-verbal,” I said as the X-rays were mounted. “We use PECS to communicate. When his ears get infected the earache PEC is most helpful. We don't have a specific PEC for legs, but I'm betting we're going to need one.” I handed his booklet of PECS, which stands for Picture Exchange Communication System, to the disinterested doctor who pawned them off to the nurse who handed them back to me. In my head The Wiggles were singing, ‘Hot Potato, Hot Potato, Hot Potato, Hot Potato’. I tapped along to music only I could hear and waited for him to finish reviewing the films. More to himself than anyone the doctor said, “A lot going on here. An awful lot. We need to book something today.” Still staring at the films, he sent the bright eyed, young nurse (so young she could have been singing ‘Hot Potato’ with The Wiggles from her highchair six months prior) out of the room. “So, what's the verdict?” I asked, fighting the mighty urge to ramble. He palmed his beeping pager and sighed thoughtfully. “A specialist will be in to discuss Alexander's situation,” he said. “Take care.”
Four hours and two temper tantrums, courtesy of me, not Alexander, passed before the verdict was reached: a good chunk of December would be spent on the orthopedic recovery floor. January, February, and most of March, Alex would be non-weight-bearing. He'd have full casts on each leg and stabilizing metal braces to restrict movement. “If,” cautioned the auburn haired, statuesque woman who I later learned was the head of orthopedic surgery, “we keep him immobile for the duration and healing goes well, he won't require a wheelchair when he's 30.”
Guilty and heartsick, I remember thinking, ‘Denial ain't just a river in Egypt, idiot. Poor kid's been suffering and you hadn't known.’ Hadn't cared to know is more accurate. Mother of the Year. Only if the presenter gets to smack me repeatedly with the trophy.
Tendons would be lengthened. Bones would be grafted and steel pins placed to give his collapsing ankles and arches support. Twelve procedures and eight hours on the table. My brave little boy who had already endured a lion’s share of pain would need communication more than ever. As our December 9th surgery date approached, Alexander's SLP introduced new PECS that would aid in specific problem solving. PECS like, itchy and nauseous and hurting. These new PECS, and a handful of old standbys, would be his lifeline. A crucial vehicle to voice his fears, needs, and of most importance, his symptoms. If something were to go drastically wrong, laminated construction paper with rudimentary words and pictures would be my best diagnostic tool.
The Big Day.
Even with eight inches of fresh snow, black ice and a 5:45am check in, surgery went off without a hitch. Hallelujah! The easiest part, for me anyway, was over. In the curtained and dimly lit surgical recovery room, I hovered beside his bed, PECS in hand, and worried. Would he be able to effectively use them? Would the nursing staff take his frail finger-tapped choices seriously or would they force me to go all Shirley McClain, Terms of Endearment, on them? I'd gone nuclear before and had no qualms about doing it again. When in pain, Alexander slaps his head repeatedly and pinches anyone within arm’s length. His neurological issues and a conveyor belt metabolism make him burn through medication like a funny car burns rubber and asphalt. It is an awful situation that would be wholly preventable if he could talk and explain. He can't. Believe it or not, I've seen the concept of 'non-verbal' fluster more than a few PhD holding medical professionals. When I lay out two or three PECS and say, “Alexander, make a choice, please.”, he taps the PEC he wants and we go from there. Theoretically. He is a teenage boy after all.
He came out of the anesthesia milk-pale and whimpering. I wet his chapped lips with a fruit popsicle and managed to keep myself together. Thrashing from side to side, he cried feebly and clawed the air. Our recovery nurse, a fantastic guy with a musical New Zealand accent, leaned across Alexander's bed, shook my hand and said, “Oi, poor fella, had a bonzer of a day. No worries, mum, he's doing great. We'll have him squared away right quick.” It was after six when we were finally admitted upstairs. Our nurse recruited an intern to help steer the bed through numerous double doors and into the elevator. Obvious pals, they traded Monty Python and Spinal Tap quotes. “The elevator goes to eleven.” And, “Can a swallow carry a coconut?” “You two are a couple of kooks,” I giggled and followed behind. It felt good to laugh but I just couldn't shake Alexander's face when he first woke up. Helpless horror coupled with misery and disbelief. I never wanted to see him like that again – although I knew that I would.
A hospital volunteer showed me how to adjust the heat and call for help. She explained how the couch flattened into a bed and said a doctor would look in on us soon. Alex whimpered and stirred like a child in the grip of night terrors. His whole body began to twitch beneath the covers and his eyes half opened. Confronted with his naked pain, I ran into the hall and yelled for a nurse. Three came.
Again, they were very young. “Who's is in charge?”, I asked. One of them (it doesn't matter which one, the ink wasn't dry on any of their diplomas) spoke up, “I'm not so sure he's in pain. The anesthesia hasn't worn off yet. Let's wait.” The others quickly agreed. “He's just disoriented.” “Yeah, we should wait.” “Look at him,” I said, “He's having muscle spasms. Can you do something? If not, page a doctor. Now.” The third nurse, who obviously hadn't read her intake notes that said ‘Non-Verbal Patient’, approached the bed. “Alexander, can you tell me if you are having pain?” I snickered under my breath and answered for him. “Let me get his PECS. He's pretty groggy so this could take a minute.” Then I said, “Alex, I have something to say. Are you hurting or afraid? Make a choice, please.” He didn't just tap the hurting PEC, he placed it in my hand. Huzzah! It worked! We were going to do fine.
Seven months have passed. Alex isn't running or jumping, but he's getting there. Last week, with the first rays of real summer sun upon us, I placed the I Love You PEC on the arm of his favorite chair and said, “Alexander, I love you. Do you love me?” Then I opened my hand and waited. He rolled his eyes, looked away and giggled. “C'mon, kid, we've been through hell this year. Don't you love me?” He burrowed further into his chair and curled up like the little stink bug I adore. “Alright,” I said with a hefty dollop of motherly guilt, “enjoy your cartoons. See ya' later, alligator.” The failed exchange was forgotten until the other night. Fresh out of the shower, P.J.'s on, and SpongeBob on the T.V. – he wandered over to his chair, reached between the cushions and handed me a PEC.
I said, “I Love You Too, Alexander.”