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live e xc e p t i o n a l l i v es she recognizes the feeling of a tic coming on,
novalee
uses a competing behavior or ?exercise? to counteract the tic. ?cbit helps her trick her brain to do something else that?s less hurtful or distracting,? michelle says. living with tourette?s has been life altering and challenging.
novalee
endures physical pain and emotional strain. ?the le? side of my
neck
is all tight and squeezed together. my muscles get tired, and every time i tic, my
neck
cracks,? she shares. some
tics
cause her pain, and fighting them can be exhausting.
novalee
has had to also confront changes in her relationships. she explains that the ?hardest thing is friendship. sometimes, i think i?m le? out because i do different things than other people and the boys will sometimes make fun of me.? school work is also much harder now because when she reads, her eyes and
neck
move, causing her to lose her place. her parents and teachers are working together to get creative with accommodations. michelle adds, ?she feels claustrophobic with all the
tics
. she tells me, ?i feel trapped in my body.? when it?s hard, we have a big cry, pray, and then we move on.? though life has changed for
novalee
, she is the same bright and creative girl who loves shopping, singing, tumbling, drawing, and soccer. she is a blossoming songwriter, and she amazes her family with her worship songs. she was too sore for tumbling the first few months, but now she has achieved a major goal?a back handspring! she also blazes down the soccer field, scoring in every game. though working hard every day to control her
tics
,
novalee
has accepted her difference and is proud to proclaim some of her favorite lyrics from the greatest showman , ?i?m not scared to be seen, i make no apologies, this is me.? ? because of a possible tumor. they all came back negative. no one could diagnose
novalee
until the family visited texas children?s hospital upon the referral of her pediatrician.
novalee
was diagnosed with tourette syndrome, a neurodevelopmental tic disorder.
tics
are involuntary, repetitive movements and vocalizations. it is estimated that 1 out of every 160 children between the ages of 5-17 in the united states has tourette?s. the tourette?s diagnosis set
novalee
on a path of trial and error seeking the right treatment. michelle shares, ?we tried so many different medications for seizures or adhd. no meds worked for her. in fact, they made it worse because they made her tired, and when she?s tired, her
tics
increase.? the only other thing to try was cbit, which stands for comprehensive behavioral intervention for
tics
, a therapeutic program for people with tourette?s. ?cbit has helped me know how to fight my
tics
and have more confidence in myself,? says
novalee
. she looks forward to going to cbit once a week because it?s ?fun.? she has discovered an ally in her occupational therapist, shannon. ?my therapist has helped me learn that i am not alone because there are other kids who fight
tics
and that i have a lot of people who want to help me and care about me,? says
novalee
. cbit has taught
novalee
so many things in just a few months. she has learned to detect the feeling before the tic. she explains, ?it feels like a tingling and an itching.? once o n august 14, 2017, nine-year- old
novalee
gros became a little more different than everyone in her life. she woke up with her le? eye closed. ?i?ll never forget that monday,? her mother, michelle, remembers. they went to the eye doctor that a?ernoon, but no conclusion could be found. soon,
novalee
?s
neck
began turning to the le?. she couldn?t control it. other
neck
movements followed, creating distractions in her fourth grade class and exhaustion once she got home. by october,
novalee
was fighting 10 complex motor and vocal
tics
including ones that forced her to blink, twist her
neck
, fling her shoulders back and forth, and jump repeatedly. the gros family, distraught, went to multiple doctors to discover the cause.
novalee
wore a
neck
brace for a month because of a suggested
neck
injury. it didn?t help. she underwent cat scans and mris, by joy holden this is me 4 0 b r p a r e n t s . c o m | a p r i l 2 0 1 8
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