Page 23 - Fall 2020 CMTA Report

? WHAT’S ON YOUR MIND?Ask David.

Dear David: David replies: express feelings of fear or sadness
I am the mother of a 10-year-old You are already doing both of you or anger will help him develop
boy who was diagnosed with CMT an invaluable service by getting healthy coping skills. Knowing
one year ago and fitted for his first help from a therapist who teaches that he can share these feelings
pair of braces a few months ago. you that there is no shame in without being reprimanded will
He is my heart and is the best thing expressing feelings and that feeling help him feel safe. Your child may
that has ever happened to me. He vulnerable is about feeling alive. not want to talk and that is okay,
seems well-adjusted, but he is so Showing others who we are is an but simply knowing that you are
quiet that I honestly don’t know act of courage. Sometimes the best there for him when he is ready will
what is going on with him much of way we can help our kids be okay be very comforting. David Tannenbaum
the time. Although I have not been with their emotions is to be a par- Whenever possible, point out answers questions from
tested for CMT, I am sure I have it ent who models a healthy the things your son excels in so he readers in his column
“What’s On Your Mind?
as well. My mom is in her seventies expression of feelings for her child. begins to develop a healthy sense Ask David” regularly in
and has CMT, but thankfully she is Anxiety and depression often of self-esteem. He might resist The CMTA Report.
only mildly affected. She never come from an unhealthy suppres- your warm and fuzzy compli- David has an LCSW
speaks about it and has always been sion of emotion. Our kids notice ments, but pour it on because he degree and has been a
psychotherapist in New
the "grin and bear it" type, though everything, so if your son senses is taking it in. By the way, there is
York City for the past 30
she often seems angry. I was clumsy that you are comfortable with nothing wrong with your child years, specializing in help-
growing up, but whenever I yourself—including your CMT— being quiet or a bit shy. I was a ing others with the task of
expressed frustration my mom that will give him a great start in quiet kid and somewhat of a loner growing emotionally and
spiritually through physical
would tell me to "stop complaining knowing that one doesn't have to growing up, but that helped me
challenges. “My CMT has
and feeling sorry for yourself." I be perfect to succeed in life. He develop a rich internal life. Check been my greatest challenge
was not allowed to express any neg- will undoubtedly have challenges in with your son so he knows that and my best teacher in
ative feelings, so I just basically shut in school, but creating a safe home you care about what he is going life,” says David.
down emotionally. Fortunately, at environment where he knows he through, even if he is not ready to
50 years old and with the help of a can tell you anything is invaluable. speak about it. Being accepting
good therapist, I am finally learn- Asking him what’s going on with- and compassionate with yourself
ing not to be ashamed of any of my out being judgmental is the key. despite your own imperfections as
feelings. I want my child to be able True attentive listening is golden. a parent will teach your son to do
to express himself and not be self- Put down your phone, look him the same. Modeling self-love—
conscious about his CMT or hold in the eyes and gently listen. Lis- CMT and all—will go a long way
himself back from doing whatever tening is a powerful form of love. toward helping him become his
he wants. Knowing that it is okay for him to best self. h

CMTA WELCOMES NEW ADVISORY BOARD MEMBER

he CMTA is happy to welcome Kenneth Raymond to the Advisory Board. Kenneth, who was
T diagnosed with CMT1 in 2002 at the age of 29, is a writer, a CMT blogger and a CMT patient
community advocate. He is passionate about learning as much as he can about CMT and translating
the disease’s complexities into easily relatable narratives presented from the patient perspective.
Born and raised in the metro Detroit area, Kenny earned an associate’s degree from Northwest
Michigan College. He was a machine operator in a metal stamping plant in Traverse City, Michigan for
10 years and was elected recording secretary of his local union. He was also elected to the bargaining
committee, where he helped negotiate labor agreements and administered the health and safety program.
He retired on disability in 2008.
Kenny stays busy in retirement: In addition to helping moderate the CMTA discussion group on
Facebook and writing a blog on CMT (www.thecryptidsloth.com/), he is a photographer and photo editor,
video editor, 3D CGI creator, motion graphics creator/editor and a woodworker. He still lives in metro
Detroit with his wife and five children, who range in age from 15 to 27. They also have two young grandsons.

FALL 2020 THE CMTA REPORT 23