By Margaret O’Connor
I was not overjoyed the day my parents announced over dinner that I was soon to have a new baby brother or sister. I had enjoyed being the youngest for nearly 8 years. Proverbial pride and joy soon replaced the resentment of my displacement when I held my brother for the first time. My enamorment grew stronger in the months that followed as I showed him off like a trophy to jealous friends and admiring neighbors.
Within a few years, I realized even with my limited base of comparison that he was different from other children his age. He was later labeled learning disabled, but in the beginning all of his differences seemed auspicious. In fact, I regarded him as a boy wonder. He taught himself to read by watching Sesame Street and could read the paper at age three. Before he was five, he had demonstrated an incredible memory for friend’s and family’s birthdays, license plates of any frequent visitor and scripts of commercials, which he loved far better than actual programs. In addition, he was extremely social; on one vacation, all our neighbors at a country resort knew him by name within an hour of our arrival.
Although I perceived him as gifted, my parents noticed that his thoughts often seemed confused and his language skills were delayed. In addition, he was somewhat rigid in his behavior and his eye contact was poor. My mother began her role as advocate for him when she pressured his school to test him upon entering kindergarten. He was labeled learning disabled, with average intelligence but below average language skills.
I first realized the seriousness of my brother’s learning problems when my weeping mother returned from getting the results of a recommended neurological evaluation. Although there had been no findings on any formal test, the neurologist reported that John was brain damaged. There was such a sense of finality and destiny in that term that it scared all of us and the insensitive neurologist did little to give us hope for the future.
The future brought other insensitive professionals, but more typically, caring and committed ones. He was eventually diagnosed with hyperlexia, a disorder characterized by a precocious ability to read, significant difficulty with language comprehension and social skills deficits. School brought many difficult times.
While my brother excelled in reading, spelling, and rote mathematics he often had difficulty understanding what he read. He had difficulty expressing his thoughts which caused him to have difficulty making and keeping friends. Despite his physical strength and coordination, he had difficulty with quick reactions and the rules in team sports.
Even now, years after he was first diagnosed, I continue to ask why– why was he born with learning problems? Why do so many things have to be so difficult for him? Why does he have to be different from his peers who are going away to college, having parties and dating? I will never understand it. But he did motivate me toward a career helping other people who have learning problems. Although I was initially hesitant to face daily the often enervating and devaluing problems faced by learning disabled students, I was inspired by my brother to pursue a career in that field.
While school gave me the requisite knowledge to diagnose and remediate learning disabilities, my brother has given me an understanding and empathy for learning disabled students and their families– an education that cannot be learned in books. The grief of the family from the loss of the “normal” child, the energy and effort to be patient during homework time, and the persistence needed to be a child’s advocate were some lessons learned from family experience. He taught me that while school can be difficult, it is nothing compared to the sadness that comes from being unable to make friends or being the target of the class bullies. He taught me the injury to self-esteem when faced with failure on many fronts, the wisdom and resolve required of parents to develop alternative strengths and the importance of helping the child develop the perseverance necessary to learn things that come easily to others.
This intensive and emotional curriculum is not one I would wish upon others. However, when I read current opinions written with respect to changes in IDEA that include questions about the legitimacy of the learning disabilities label, it is clear to me that many have only learned about learning disabilities from books. But just ask anyone who has lived with it. It exists and it is pervasive– impacting not just school, but home life, not just the person, but the family.