It was a Sunday night, much like this one, about a year ago. Kiddo
alights from the shower with what we now know was her first verbal and
physical tics. She was making a weird sound with her mouth over and over
again, and her head kept jerking to the side. She told us she was scared,
because she couldn't control either of these.
It took us about four months for her to finally see a specialist, and
to get a diagnosis. With the help of some well-timed video footage on our
phones, kiddo received the diagnosis of Tourette's Syndrome. The recording
made for an open-and-shut case in the eyes of the professional: Kiddo had
"the trifecta" of behaviors that made her diagnosis a lock.
From the moment the school received the diagnosis through her last day
of classes last year, the school was amazing to her. They even had a
specialist speak to all of her classes — teachers and kids together —
about what Tourette's Syndrome is and what it is not.
When her symptoms elevated back in the spring, the specialist told us
that the escalation was normal for that time of year.
Over the summer, her symptoms relaxed significantly: the stressors that
were present during school life were absent over the break. But we did have
one very uncomfortable event: she was actually institutionalized for a week,
simply to execute a swift change of medication in a controlled environment.
It was a hard week for us all — our poor kid was placed among kids who
were drug addicts and suicide risks. It seemed a bit like going to the city
jail to sleep off a bender and waking up among hardened criminals in prison.
She was forced to do group therapy for several hours each day, and was
horrified by the things the other kids shared — one kid even sharing that he
had attempted to hang himself, but the ceiling didn't support his weight; so
he tried to slash his arm, but ended up missing every vein. For her part,
kiddo was embarrassed to have to say that she was only there for a change in
her Tourette's medication.
But school is back in session and kiddo has upped her tic game (despite
the medication change). She's not been attending classes for the past two weeks
because her verbal tics force her to say awful things — things she's absolutely
mortified about; things bad enough that
the school doesn't want her around other kids. Tonight, on the eve of week three,
she seems to be exchanging "the 'N' word" for something similarly vulgar, but
without the racial element. I'm actually crossing my fingers that she'll go to class
tomorrow. Sure, lots of kids are going to think she's spoiling for a fight,
but at least they won't brand her a racist.
Verbal Tics
Verbal tics can come from absolutely anything with which she comes in contact.
Internet content and conversations overheard are two major sources. She could
hear something once and it'll stick around in her subconscious mind and get
repeated as a verbal tic for weeks thereafter (she repeated the name "Kevin"
for about three weeks earlier this year). Content she consumes often, such as
clips from Vine or TikTok she can watch over and over again and may not develop
into a verbal tic.
Physical Tics
Physical tics are a harder nut to crack. These are involuntary movements that
can involve any part of the body. Last spring and again this fall, she won't have
eaten lunch because she either can't physically hold a utensil to consume it,
can't hold the food to feed herself, or tics in her arms throw the food. It's
sort of like putting a baby in a high chair; you simply don't know how much
food will go in the face, on the face, or on the wall or floor.
Although the tics most commonly force her to close her hands, others have
presented in recent weeks. She's having trouble walking at times now, because
the tics force her to kick, sort of like erratic goose-stepping. She's also
experiencing tics involving her eyes, where she'll just sort of stop all other
physical activity and her eyes will dart about for a few seconds. She claims
she can't see when this happens, and she loses at least speech when it happens.
She can hear and respond using her hands when it happens (say, tapping on the
table) while one of these ocular tics is happening.
"Mental Tics"
A side effect of one of the medications she was on was producing uncomfortable
thoughts. Getting her off of that medication was the reason she was in the
hospital for a week. It was through that experience we learned about the
role Obsessive/Compulsive Disorder has in the syndrome.
Obsessive/Compulsive Disorder
Part of what puts the "Syndrome" in the name of the disorder is that
Tourette's is comprised of multiple factors. Among them, in kiddo's case, is
OCD. So far, OCD is presented most commonly in the state of her bedroom, but
it has also surfaced in the form of persisting certain thoughts.
Persistence
If I have something bad enter my day — like something I did to another
person, or something someone did to upset me — I'll keep thinking about it.
I'll mentally "grind" on it for a while, sometimes at the expense of sleep.
This is something I understand about my personality.
Kiddo experiences this too, as a function of the compulsion aspect of OCD.
In her case, she wouldn't be able to rid herself of some unpleasant thought.
We learned these ugly thoughts were a function of her previous medication,
and that the OCD was continually serving them up to her.
Cleanliness
I've a dear friend who is afflicted with OCD in a way that his environment
must be maintained in a specific state of tidiness. The dress shirts in his
closet are arranged in color order. The items on his desk have a specific
placement. His world must be maintained in an orderly way. He has a huge
heart and I love him dearly. As a layperson, I'd say his OCD is acute.
Kiddo's OCD is different; sadly, her compulsion is not toward cleanliness.
Personally, I can't deal with clutter and crap. Maybe that's the military
training in me. Kiddo's compulsion is in keeping things that are obviously
trash. Example: for a while, before we knew about her Tourette's, kiddo wore
breathing strips to bed. Now, these strips open much like latex bandages do:
the product is sandwiched between two strips of paper. The paper is peeled
apart to reveal the sterile strip. I would walk into her room and be apalled
at the papers for these strips. They were everywhere — on the floor, on her
dresser, on her bedside table. She knew these were trash, but something --
she didn't know what — something was preventing her from throwing them away.
She didn't necessarily see these papers as valuable — she knew they were
trash. But she couldn't close the loop on throwing them out. We now know
that an element of compulsion was preventing her from throwing
them away.
This compulsion extends to other rooms in the house. I'm constantly tidying
up after her — shoes in the living room; detritus from lunch left in the
dining room. I believe she is doing the best she can with these — I've seen
her clear her place, rinse off the dish and silverware, and put them in the
dishwasher. And it's amazing when that happens. But her compulsion
prevents her from turning that moment of beauty and light into a wonderful
habit.
Impact on Parenting
You know, this parenting thing doesn't come easily. When I started,
the only reference I had was how my dad parented with me. I distinctly
recall when kiddo was 4 we would put her to bed and she's sit there and
talk for another hour. How would my dad handle this? He'd tell us to
be quiet once or twice, then he'd get angry. So, I did the same. That's
when I began to learn that kiddo would not respond the way we did. We
were quiet. Kiddo got upset. My "What Would Dad Do?" reaction would just
make things worse. Sometimes, way worse. I needed to figure this stuff
out using a different tack.
I've had the pleasure of coparenting her for close to ten years now.
Today, she's a teenager. In every sense of the word.
I read some time ago that children are rather slow to develop a
sense for things outside of themselves, and to learn about how their
actions impact the people and things around them. Those concepts don't
really come into focus until their high school years. I also read that
kids in middle and high school actually require more sleep than what
we'd consider a normal 8 hours, because their bodies are growing and
changing. The education system is actually planning or making changes
to their model in response.
As a dad, it makes sense to adapt my model, too. Sleep is encouraged
generally. But the Tourette's affliction makes sleep an even more
precious commodity, because she'll often experience physical tics through
the night. So when she sleeps soundly, I want to keep her sleeping soundly
for as long as possible. Doesn't matter what time of day it is.
But I struggle with these a bit, because I really don't know how much
of her habits is compulsion, and how much is a function of the process of
maturity. Maybe the "why" doesn't matter all that much.
Kiddo's Tourette's Syndrome has made me a more compassionate man, because
now I understand some things.
So now I understand why she can't keep her room straight. She's not a slob.
She has an affliction. It doesn't anger me anymore like it used to. Now I
accept it because I understand it's something she can't yet control.
Now I understand why she doesn't normally clear her place at the table,
or why she leaves her stuff everywhere. She can't pick it all up yet. She
has moments, but those are lovely surprises. Again, I don't get upset about
it. I'm just thankful for the times she does it. I know she's trying, and
that means a lot to me. (Besides, fighting the daily battle of keeping the
place picked up keeps me moving at least once an hour, and that keeps my
Apple Watch from barking at me. I'm on a Move Streak of 469 days.)
If we're out to dinner and her hands close up, I will feed her, and I'll
explain our situation to a manager in case she feels she may have a bad
attack.
If her arm shoots up and she exposes her middle finger (a common physical
tic for her, I'm afraid), I'll put mine up right with it and cover her hand.
I'll do everything I possibly can to make her feel more comfortable where we
are. I tell her, "Nobody knows us here," and for the most part, that's true.
I won't hesitate to leave my comfort zone to make her feel better, if that's
what's needed.
But the whole truth is I love that little girl more than anything else in
the world. She's already had an example of an unresponsive parent; she needs
to see what parents who love and cherish her and each other looks and feels
like. Her affliction scares her to the point where sometimes she just does
not want to be alone. I can't imagine that. I can't imagine having to go to
bed wearing kids' Hulk gloves and a fucking boxing helmet so maybe my face won't
be all bruised up the next morning from hitting myself. She knows what that is.
I can't imagine having to spend a week in a mental ward with kids who share
their pain about drug addiction and wanting to kill themselves. She's been
there and done that. She didn't ask for any of this. So any way I can make
any of it easier for her, I'll all in. And I couldn't be prouder of her nor
happier to do it.