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
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!
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