The Labels we Place
Kyle with his sister Michelle
The Labels we Place
My brother's love of education was stolen by the label that we placed on him
Despite the world telling me differently, I never felt that my twin brother Kyle was broken. We laughed uncontrollably as we watched Monty Python’s Flying Circus, Family Guy, and Mr. Bean together, we went to movies together, and he was my partner in crime whenever I wanted to misbehave as a child-and was always more than willing to take the blame. In short, he was my little brother and best friend, nothing less than an integral part of me.
Kyle never lived without labels. He received a diagnosis of autism at three years of age. He never developed spoken language. He first learned to sign (lazily pointing was far more efficient) before he got a facilitated communication device, basically a large keyboard with a speaker. This device would either let him spell things out or he could push preprogrammed keys to speak phrases. Within weeks Kyle quit using the the preprogrammed functions and switched to always typing out his thoughts. In fact, Kyle was such a good typist that in high school he showed an aptitude for medical transcription since he could type fast enough to keep up with the recordings in real time. In doing this Kyle also never misspelled words...never, no matter how difficult.
Relatively early in life we learned another thing about Kyle. Like my father and myself, Kyle was a voracious reader. When young, we thought Kyle was always just scanning through pages of magazines and newspapers as fast as possible to look at the pictures, but he was in fact reading them. We found this out one day when he was either 6 or 7; there was an interesting article in National Geographic and we caught him slowing down just enough that we could see his eyes darting back and forth across the page as he was reading. Basically, we caught him being just like the rest of us. He was clearly intelligent, just not able to speak.
When it came time for school, Kyle attended a preschool program that was developed to help teach basic life skills to autistic children and prepare them for academic success. This required he and my mother to travel over an hour each way to go to school. Upon leaving this preschool and embarking into a traditional school system, my family faced a difficult choice. Kyle was held back one grade level, so I was now a year ahead of him in school. Kyle was also officially given the label mentally retarded to go along with his label of autistic. This was a requirement for Kyle to receive the specialized attention he needed in his early education. To this day I am convinced that this label was a mistake. I am not sure that any services Kyle received were worth the social stigma.
Years later Kyle was given an adult intelligence test that was not focused on manual skills like the tests for children, and his intelligence was untestable. His adult intelligence was off the scale, but he was never able to shake his labels...simply because he could not tie his shoes or button a shirt without assistance.
When it came to school, Kyle far surpassed the "normal" kids. He sat in class with his laptop furiously clicking away taking copious notes. He actually loved school and loved learning more than anything else. Like my father and myself, Kyle particularly enjoyed history and easily able to pull B+’s and A’s in classes that were known as valedictorian killers. One teacher, a former University professor, personally proctored all his tests to Kyle because he didn't believe Kyle would be able to do as well as he was without help. This particular teacher found out just how smart Kyle was, and learned to respect Kyle's intelligence. To be frank, I never saw Kyle happier than when he was walking in the hallways and heading into his classroom for another session of learning.
Kyle's love for education was so profound that when I left for college he had a very hard time because he was not allowed to attend the University with me. Even when I had moved to Honduras for 2 years for an ecclesiastical mission, Kyle was fine with it. He just kept track of when I would be coming back. But when it came time for me to go to college, we could not get Kyle to stop crying alligator tears when he had to get back in the car and drive home. For years as a family we kind of laughed about this like it was some kind of cosmic joke. Upon reflection, Kyle's heart was broken that day. He knew deep down that we had placed a limit on him, and there was nothing he could do about it.
To this day I regret Kyle not coming to college with me. I feel that I had a hand in forcibly holding him back and preventing him from achieving his potential. That thought haunts me, and I think it always will.
Since he was not allowed to go to college, Kyle developed a unique personal development strategy: he watched the local public broadcasting station that ran university telecourses in math and history all day, taking fastidious notes. He also started to start typing entire chapters out of Utah and US history textbooks I had left laying around the house. When he would reach the end of the chapter he would then diligently answer the study questions. He even went so far as to "borrow" my college textbooks when I returned home on weekends to keep on top of my work.
Kyle found a way to keep learning regardless the labels. Kyle kept up this learning until the end.
Fast forward 14 years. Out of nowhere Kyle was admitted to the hospital with acute kidney failure and dangerously variable blood pressure. His lungs aspirated. Long story short, his last few days were spent on dialysis and Propofol/Morphine anesthesia surrounded by family as we impatiently awaited results from the pathology lab that would only finally arrive a month after his death. The doctors kept recommending we let him linger, just in case something was learned from the pathology report that never arrived, but we knew it would have only protracted Kyle’s Purgatory. So we let him go…
Not long after Kyle's passing I could not get out of my head his love for education and learning. Kyle wanted nothing more than to be in school and actively learning. In fact, it still breaks my heart a little bit that he missed the opportunity to come to California to see me receive my Ph.D. Somehow I think he would have liked that...and been proud of me.