The second trip to the neurologist was at the end of a
journey that started with anguished visits to our family doctor, trips to a
psychologist, John Rosemond parenting lectures, and reading just about every
book about parenting on the shelves in Noblesville’s library. Why, after years
of persistent discipline, why couldn’t we control our son’s impulsive behavior?
And why did he bite his lip nervously for days until it bled? When we trained
that away, why did he begin twirling his hair between a finger and thumb until there was a bald spot? When we trained that away, why did the next odd thing begin?
When the neurologist told us our son had Tourette Syndrome,
I was stunned.
Driving home with that sullen boy in the back seat, tears
ran down my cheeks as I thought of the times I’d angrily disciplined a child
who often, apparently couldn’t control his behavior. The diagnosis explained a
lot – like why punishment worked with our other two kids, but too often not with
this one.
When we asked what the future held, the doctor
casually said, “Well, sometimes it just disappears when they’re teenagers.” That sounded like the cheapest consolation lie I’d ever heard.
That was more than a dozen years ago. Last Monday I drove to
a Japanese grocery/restaurant in Castleton with that boy. He is 23 how, just
graduated from college with a degree in Japanese. Cal is six foot-two,
handsome, well-spoken, well-read, and has a freakishly broad taste in music. That
day he was seeking the ingredients to make authentic ramen noodles as good as
those he came to love while studying in Japan last year.
In that oddball grocery, a place filled with shrimp-flavored
chips, fish sausage, quail eggs and frozen squid, I got a text from a friend,
Alison, asking if I was coming to the cookout she and her husband were having
that evening. She hoped I’d bring my son by to meet her son.
I first met Alison and her husband Christian in a bar last
winter. After a long talk about hybrid ethnic music acts like Balkan Beat Box, we
talked about our kids and realized we both had a child with Tourette’s; theirs
- 10 years old, and mine - all grown up. Alison asked if I'd bring my son over sometime. Perhaps present a roll model? Proof of what was
possible?
As Cal and I sat down to eel sushi and noodles in a little
diner corner of the grocery, I asked if he’d like to stop by Alison and
Christian’s house later. He offered a quick, “Sure.” On the ride home we talked
about Cal’s sometimes difficult childhood and tried to imagine what Alison’s
son was experiencing. I recalled that most of Cal’s elementary teachers
probably hated him by the end of the school year. He remembered the stuttering,
the nervous ticks, and the impulsive behavior that so often got him into
trouble.
A few hours later we grab a large bottle of Belgian Ale from
the fridge and go to Alison’s house. We find her in the kitchen making humus,
preparing for her cookout. Her little boy, Seth appears and listens quietly to
our chitchat as I open the beer and pour three glasses. He has a bright and
eager face, like he knows something he needs desperately to share. Cal towers
over us all with a tanned face and his happy, confident manner. His hands are
in his pockets and a small backpack is slung over his shoulder.
The neurologist had been right. During his teens the
Tourette’s simply evaporated.
Seth reaches out to Cal holding a small Star Wars
figure and asks with an urgent, almost breathless challenge, “Do you know who
this is?” Cal smiles and quickly answers, “Mace Windu.” He takes the light saber-wielding
figure and examines it. In moments they disappear to Seth’s room to see his
other toys.
Though an adult now, Cal will know the name of every toy and
can sit cross-legged on the floor and play with them quite happily. It is his
way. And in this century-old house in Old Town he is at home. He grew up in places like
this. He understands Seth’s life more than a little.
Alison loads the food processor with garbanzo beans and
roasted red peppers and we begin to unload about our boys. I am reminiscing
about desperate, worrisome matters from the past, but this woman in her early
30s is right in the thick of it. She runs her fingers back through her dark
hair and speaks with the firm resolve of a mother who’s cried her tears, done
her homework, and intends to find the best path. She reminds me of Cal’s mother,
and me a little, all those years ago. I lean back against the stove, sip my
beer and respond with the names of drugs he took, the side affects, discipline
techniques, positive vs. negative reinforcement – and details of life with a
child who, try as he may, just wasn’t entirely like other children.
In the living room, Cal and Seth have set up an old-school
video gaming system and are killing bad guys. A 10 year old and a 23 year old,
having a brief play date.
Alison and I are dipping pita bread and carrots into the
fresh humus, sharing stories of the nurturing successes with our children and
struggles with those who don’t or won’t understand. I recall a middle school
counselor who said that Cal’s mother and I needed to, “stop coddling our child
and teach him the meaning of consequences.” Good thing for him it isn’t socially
unacceptable to choke a school administrator.
An elegant, vine-like tattoo winds down Alison’s right
shoulder and a swan is tattooed on the other. She is a “hand-talker,”
gesturing broadly as she speaks, as if drawing a map in the air of the
emotional and tactical places she and Christian and Seth have been on their journey.
It is clear how much she loves her son.
I suppose raising any child requires the drawing of a
one-of-a-kind map – a sometimes make-it-up-as-you-go map. Plotting the route
for a child with Tourette’s is harder, fraught with special heartaches and
frustrations. There is the fear of drawing a failed map, regrets over the wrong
roads taken to dead-ends or dark places, and a desperate hope of eventually getting
to an acceptable destination.
I tell Alison, “As a child Cal got so used to disappointing and
irritating people, but it always amazed me that he didn’t withdraw. Instead he
kept coming back and trying to connect.”
Alison smiles broadly and nods, “Seth is the exact same way.”
The visit was too short. Alison had a cookout to host and
Cal and I had a family dinner to get to. I really have no idea if Cal or Seth
got a thing out of it, but I know I did.
When you work so hard to understand and provide what your
child needs, it breaks your heart when the world you send them into is
thoughtless or impatient and needlessly hurtful. And when you’re a struggling
parent there is a feeling that no one understands, that your child’s problems
reflect a failing in you, a weakness in your parenting.
Those worries are in the past for me. It all turned out just
fine. Still, there’s something healing in being reminded of that, and knowing that
you have something to share with a parent and a child who have much of the
journey still ahead of them.
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