Wednesday, April 10, 2013

My "Challenging" Brother

My brother went in for an MRI a few weeks ago. As the nurse was sedating him, he announced that he had “three Mommys” - his birth mom (or “tummy mommy”), our Mom, and me. My brother is twelve years younger than I am; he was five when we adopted him, and he’s ten now. His unique characteristics, the ones which have him on an IEP, are fluid and have changed in the last five years. When my parents adopted my brother, his speech was severely under-developed due to neglect he had suffered while in the custody of the state. He had no problems with emotional connection, but he stuttered and cluttered, sometimes beyond comprehension. After two years with his speech therapist, my brother’s funny, sharp commentary came out in clean, rounded syllables. His consonants were distinct and his expressions purposeful.

As a military family, our status changed when we welcomed Bryce. The Air Force considers him an “exceptional dependent,” and because of this my father is unable to work on certain bases which can’t provide the care Bryce needs. Though Bryce has worked with a wonderful team of professionals, therapists and pediatricians and neurologists, my parents have fought an uphill battle for him at school. Although the faculty at Bryce’s public school know his ADHD diagnosis, we realized the lunch aides were ignorant to it when they demanded he sit with his head on the table and be quiet during lunch, something my brother simply cannot do. (Don’t worry, my dad busted into the main office heroically and demanded an explanation.)

Because of these difficulties, my mother has trouble deciding how much of my brother’s background should be public knowledge. Dealing with the school systems in Albuquerque is frustrating, as teachers are often unaware of the effect Bryce’s childhood trauma had on his brain. Without violating my brother’s privacy, I can explain that he spent the first five years of his life in fight-or-flight mode. Recent neurology studies show us extreme stress in toddlers can change the way they view and interact with the world. As that same neurologist told my mother, “He may not remember what happened to him as a baby, but his brain chemistry remembers.”

His pediatric neurologist called him “twice exceptional,” meaning his high IQ doesn’t match his ability to focus or reason with himself. He came to us with an ADHD diagnosis, but recent evaluations have doctors suspicious that he was misdiagnosed. His current pediatrician believes Bryce actually has Tourette’s Syndrome. It’s difficult to view my brother through the same objective, diagnosing lens I use when I’m mentoring kids with special needs. I know his verbal tics, the throat-clearing and low humming, are symptoms of his Tourette’s syndrome, but in my mind they’re part of his personality’s unique poetry. He breathes differently when he’s concentrating, and he makes odd-looking faces to release tension. His impulsiveness, I learned in college and in trauma training through the Federation, is a sign of his altered brain chemistry.

When my brother says he has three “Mommys,” he’s pointing out that his life defies social norms. He has a nuclear family who loves him intensely, and an extended family, four aunts and nine cousins, all of whom support him and make him feel permanently adored. He likes the boys in his SPED classroom, and he comprehends their special needs the way they incorporate his. Some of my brother’s friends can’t attend birthday parties because of the loud sounds, and another prefers to trick-or-treat during the day because of vision impairment. My brother simply works around it, the way we work around him wanting to play chess over and over as he grunts and squints over the board. We can’t go to quiet Italian restaurants, but Bryce likes Red Robin better anyway (and so do I). Bryce is a Webelos Scout, he’s in the Math Club, and he won First Place in the Pinewood Derby. He reads Goosebumps books and novels by Jerry Spinelli obsessively, holding up his little hand to keep us from talking to him when he’s finishing a chapter.

Bryce is stubborn and perceptive and sarcastic, and he’s “a challenge” the way reading a great book is a challenge. He’d probably like that comparison—he’d insist on being “Ghost Beach” or “Monster Blood IV.”

By Emily Gaudette

1 comment:

  1. Great post! As a mom of a 12 year old with TS, I'm well aware of the throat clearing, humming and other sub vocalizations - we are blessed to be in a school system that take this all in stride. CBT has helped him quite a bit, but like you we feel that all these things are just part of his unique "flavor" - he has perfect pitch and can play any song he hears by ear on the piano, and loves performing in the yearly recital at his school, and recently earned his black belt in karate. These kids are gifted in their own ways and their challenges imbue them with an empathy not always seen in "normal kids". Your brother sounds like he's in excellent hands - good luck!