Our journey with NVLD began 18 years ago, but we didn’t know it until Katie was in eighth grade. We knew Katie was different. When Katie was a toddler, she threw tantrums like a hellcat. No amount of coaxing, cajoling or threatening would make Katie change her mind about anything. As she grew, we didn’t know why she refused–vehemently–to do seemingly ordinary things, like ride a bike. She said she just wouldn’t. We believed we had a very obstinate child.
Katie is one of a set of twins, and her twin sister Maddie helped her to navigate the world for many years. Katie’s twin sister is unusual in a different way; she’s very academically gifted. At the school’s urging, Maddie skipped first grade. Consequently, Katie was left behind to begin to fend for herself when Maddie went ahead to junior high and Katie was left behind in elementary school. Katie’s world began to unravel. Her odd behaviors became more and more obvious. Once Maddie began to develop her own world, Katie’s old combative behaviors seemed to resurface with a fury.
After a stint in the behavioral health unit at our local hospital, Katie was diagnosed as Bipolar NOS. Then, she was diagnosed as Borderline Personality Disorder, then Oppositional Defiant. Nothing seemed to really fit–despite what therapists were telling us. She was also diagnosed with Hashimoto’s thyroiditis about the same time. She began taking a cocktail of meds, which seemed to change weekly. She became so agressive and angry that we asked the state to take custody of her for a while.
We looked everywhere for help. One day, I began thinking about what Katie’s brain might look like. I began searching for someone who might be able to tell me. First, we went to a neurologist, but still no answers. Someone at Katie’s school mentioned a neuropsychologist, Sam Goldstein. Dr. Goldstein’s office diagnosed Katie with NVLD. Katie has a more than 50-point spread in her respective IQ levels, which, we’re told, makes her a statistical outlier in the NVLD world.
Katie just turned 18 and is in her last semester of high school. We moved across the nation to seek help for Katie. She is passionate about American Sign Language, so we’ve moved to be near a college program that will certify her as an interpreter without requiring a degree. She seems to be doing well here. She has a huge heart for disabled persons, and we feel confident that she will find a place in this world. We’re keeping our fingers crossed that Katie will get some form of disability assistance, but that remains to be seen. As Katie has grown, we’ve had to help her process her grief over being so disabled. The hardest part for her, as she expresses it, is that she knows how disabled she is, but she can’t change it. It’s very hard for her because her disability is neither obvious to other people nor easy to explain. She feels alone.
I am 50 years old and have three daughters: the twins and their older sister, who is married and has two children of her own. I am married to Gary, who is a retired English Teaching Professor. I hold degrees in accounting and English and have worked in banking and as an editor. I currently work as a church administrator.Share your own story