Saturday, May 29, 2021

The Trials of Parenting a Tourette's Child

 

NOTE:  Here is a continuation of an excerpt from a book I'm working on, called "Far From Magnolia Drive."  It's a story of a mother and her family, echoing some of my own experiences, but not a memoir.  If you want to read the first excerpt, it's in my archives.  Hopefully, there will be more chapters to come.


Lying sleepless in bed, she listened to Rick snoring softly.  The sound didn’t really bother her.  She was just envious that he was asleep.  Her mind was whirling around, trying to pray, but her thoughts kept wandering.

Turning onto her right side, produced an angry meow. 

“Sorry, Tiglet,” she whispered.  “Didn’t know you were there.”

The tiger-striped cat they’d been given last year curled up between her knees and arms, in the hollow made by lying on her side.  They had always been cat people, so after Rick’s first cat Tiger died, all of them longed to have another brown-striped cat.  Since this one was a kitten, the name Tiglet came naturally.  He felt warm and cuddly, and the sound of his purring began to relax her.  Still the thoughts kept flowing:

          She remembered when they first noticed Jay squinting his eyes and blinking a lot in kindergarten.  Sometimes his mouth twitched, too.  When they took him to the eye doctor, they learned he did need glasses, but glasses didn’t stop the blinking.  When they asked the pediatrician about it, she said he’d outgrow it.

          The next thing that came along was the constant throat clearing, with clicking sounds interrupting his speech.  About this time, she saw a feature on Tourette’s on one of those news shows, probably Sixty Minutes. That’s when she began to wonder, but no one else noticed.  Maybe I’m being paranoid, she told herself at the time.

          Next they took Jay to an Ear, Nose, and Throat doctor, who said his noises weren’t caused by allergies, and maybe he was becoming a stutterer.  This turned out to be another dead end.  She decided God was making her work too hard at learning patience.

         

How she wished she could go to sleep, to keep these thoughts from carrying her away.  They just wouldn’t stop tonight--like a dam had burst in her mind, with all kinds of old suppressed feelings flooding out.  She kept petting the cat, and he purred.  But her mind reeled on:

          By second grade, Jay’s vocal noises were a disruption in class.  The teacher sent him to the school counselor, who suggested getting a full psychological evaluation.  The nearest child psychologist was over sixty miles away.  Though their health insurance didn’t pay for any of this, they went through with it, wanting to help Jay as much as they could.

          After the psychologist’s long session with Jay, he sent them to a neurologist.  When were they going to get any answers?  The neurologist did a battery of tests, too, including an EEG.  They had to drive over an hour to the doctor’s office for each test.  Jay was deathly afraid of needles, and by the end, he didn’t like doctors either.  After all that, the neurologist said Jay probably had Tourette’s Syndrome. 

If only they’d explained beforehand that there’s no definitive test for Tourette’s, but all they can do is rule out every other possibility.  What an ordeal! she sighed. I’m not sure who it was harder on, Jay, or Rick and me.  I still hadn’t learned enough patience apparently, for this was only the beginning.  The neurologist said we had to wait a year before trying any medication.  I guess they were waiting to see if anything else showed up.  

She knew she’d been hoping for some miracle drug that would make things all better.  But there never was one for Jay.

          Denial set in, especially on Jay’s part.  He wouldn’t even let them use the word Tourette’s around him. She and Rick had to meet with his teachers every year to explain Jay’s condition, to let them know that Jay wasn’t being intentionally bad. 

There are so many misconceptions about Tourette’s.  It was barely even mentioned in the psychology courses I took for my teaching certificate.  She mouthed these words to the cat.

Still stroking Tiglet’s head behind the ears, where he liked it best, she mumbled aloud, “I wish I was a cat.  My life would be so much simpler—just eat and sleep.” 

Almost as though he heard her, Tiglet put a paw on her hand.

At this point in her life, she felt a desperate need to get all these scattered memories collected into some kind of order.  Maybe it was a symptom of aging, this need to look back, to try to convince herself that life had been worthwhile.

Right now, the memories bounced around in her mind like popcorn flying out of a pan with the lid off.  Somehow, she must corral them, maybe try to put them on a string, like the popcorn garlands they used to make for the Christmas tree, when Amy and Jay were young.


 

Thursday, April 29, 2021

I'm Choosing Love

 Chapter 4 of the first epistle by the Apostle John, has long been one of my favorites.  Today I read it in the "The Message" for the first time.  Eugene Peterson, the pastor who wrote this paraphrase of the Bible, has a way of shedding new light on many old familiar verses.   So I feel the need to share it with you.

"God is love.  When we take up permanent residence in a life of love, we live in God and God lives in us.  This way love has the run of the house, becomes at home and mature in us, so that we're free of worry...

"There is no room in love for fear.  Well-formed love banishes fear.  Since fear is crippling, a fearful life--fear of death, fear of judgment--is not yet fully formed in love.  We though, are going to love--love and be loved.

"First we were loved, now we love.  God loved us first.  If anyone boasts, 'I love God', and goes right on hating his brother or sister, thinking nothing of it, he is a liar.  If he won't love the person he can see, how can he love the God he can't see?"

It makes me very sad that the world's view of Christians is based in our finger-pointing, our antagonism, and even hatred.  What ever happened to "They'll know we are Christians by our love..."?

I've been reminded recently of what happened in Germany in the 1930s.  The Fascists, who thought they were "right" and were on the Far Right, used fear of Socialism to lead that country far astray.  Our country needs to beware of that path.  Especially Christians.  For while we're looking so hard toward the Left for the appearance of the Antichrist, he may sneak up on us from the Far Right.

Remember, Satan can disguise himself as an Angel of Light.  He prowls about like a lion, who silently stalks its prey. 

Monday, April 12, 2021

A REWRITING EXPERIMENT

 I'm doing an experiment in changing the point of view and the verb tenses of a book I'm working on.  My hope is the post a chapter here each week.  If anyone cares to follow along, I'd appreciate it.  If you came in the middle of the process, all you have to do is look at previous blogs to catch up.  

This story "Far from Magnolia Drive" is based in part on personal memories, though it has been fictionalized in order to give it more readability, I hope.

You can find me at mferler@peaksandbeyond.com or mferler@blogspot.com



1.   Walking in the Dark – 1994

 

The moon was barely peeping through the East Texas piney woods as Mary Anna Evans walked on her dark country road.  Stalking along the grassy shoulder, she rubbed at the tears streaming from her eyes.

My first big mistake was asking God for patience, she thought.  He sent

our son Jay fourteen years ago, and I’m still trying to learn to be patient. 

Today Jay stormed into the house after school screaming, “I hate the school bus!”

          “What happened?” she asked as calmly as she could.

          He replied, “They kicked me off the school bus for standing while it was moving.”

“But why?  Doesn’t your driver know where you get off?”

“She was a sub,” he moaned. “I was only trying to tell her where my stop  was, and she gave me a ticket.”

          “A ticket?”

          “Yeah, I can’t ride the bus for a week, and you have to talk to the school principal.”

          This wasn’t the first time Jay had trouble at school.  He had Tourette’s and Obsessive-Compulsive Disorder.  If things got out of his view of what the world should be, he exploded like this.

          She stared at him, lost for words.  What am I supposed to do, God? she thought.  When Jay gets like this, there’s no stopping the outburst.

          He didn’t wait for any reply, storming into his bedroom and slamming the door.  She had learned the hard way over the years not to open that door.  He always needed time to calm before he could focus on anything.  

God, why are you doing this to me? she cried to the empty night as she

walked.

No answer.

Can’t you ever give me a break?  And what about Jay?  Why does he

have so many difficulties in school?  Rick and I try so hard to help him, but nothing seems to work.

Again, the silence of the night replied.

As she dashed away more tears, she wondered if he inherited this from

her.  She, too, was overly emotional sometimes.  Her husband Rick often said, “You’re just as bad as he is, Mary Anna.”  He was probably right.

A cold wind rushed into her face as she turned the corner onto their

rural road.  She’d already walked a mile in this unseasonable chill for a Texas November.  Taking a walk was the only thing to do when tempers were boiling over in their house.  If only there was somewhere she could run.  She didn’t really want to go home right now.

She knew Rick tried, but sometimes he felt as caring as a porcupine.  Get

too close and the quills would get you.  They’d tried many times over the years to come to grips with how to raise Jay, but seldom agreed.  He wanted to use tough love, but she feared this would fuel their son’s frustrations and lack of self-confidence.

They’d tried counseling with their minister, but he was one of those

conservatives who equated self-confidence with pride.  In her mind they weren’t

the same at all.  Maybe he and Rick are right though.  Perhaps I am too

lenient with Jay.  I just don’t know she sighed into the chill dark sky.

          Life with Jay was like a constant walk on T-Rex eggs.  One wrong step, and a ferocious creature rose up and raged.  His jerking tics often caused painful muscle spasms, and his involuntary noises made people wonder if he was crazy. 

Who wouldn’t have a short temper, if they had to live with this all the time?  Jay tries to cope as best he can, and he wants so much to be ‘normal’ like his peers.  Again, her heart was asking, God why?

The tics and facial grimaces began when he was small.  They tried neurologists, counselors, and medications.  Moving around for Rick’s job hadn’t helped, either.  There hadn’t been enough consistency, for either Jay or her.

 Ever since they married, Rick had worked for an oil company, so they’d been following the oil fields of the Overthrust Belt.  Jay was born in Wyoming, a brown-eyed boy with her dark coloring.  Daughter Amy was born in Montana.  She was her blond, blue-eyed baby, taking after Rick.  Like him, though, her hair darkened to golden brown with the years.

Leaving Montana was hard for Rick.  He loved the mountains close-by and the wide-open spaces.  She’d grown up in East Texas, though, so was hoping they could get more settled there, especially now that the kids are getting into their turbulent teens.

The moon was now above the treetops.  Nearly full.  If only something or

someone would shed more light into my life.

For the past couple of years, they’d moved among many small

Texas towns like gypsies, following the oil explorers.  So often she wished they were closer to a city like San Antonio or Dallas, where there would be resources to help with Jay.  But driving two hours, plus traffic, was too great a cost to join a Tourette’s support group.  And the good counselors were just as far away.  There had been days when she thought about packing herself and Jay off to Dallas so she could take him to a good neurologist or counselor, maybe even trying to live there on their own.  But I’m too much of a coward to do something as bold as that, she thought.

Talking to Rick helped a little.  Like most men, he tried to fix everything.  But she didn’t need that as much as someone to listen.  Someone to share her burdens.

This past year, it was as though her life had drained into a hot desert. 

Where is the living water you promised, God?

Having a diagnosis for Jay’s problems was a relief at first, but Jay hated

going to the neurologist almost as much as he hated taking his medication.  Sometimes the meds seemed to help, but he still had a lot of tics and jerky movements.  His short-fused temper was the worst part.

 

          Soon she was approaching their driveway.  The wind was picking up and there was nowhere else to go, so she walked slowly toward the front door.  An owl hooted in the distance.  Off in the neighbor’s woods a couple of coyotes began howling and yipping.  Were they talking to the moon, too?

She glanced up at the silvery orb suspended above their front yard.  “If only you would answer me,” she said aloud.

          The only reply was the owl.

          Climbing the concrete steps to their little front porch, she took hold of the door handle.  The hinges creaked as she pushed it open.  Then she could hear the loud, throbbing music coming through Jay’s bedroom door.

          “So, you finally came back, Mary Anna,” said her husband’s voice from the family room.  He was watching TV as usual. Since he used her full name, she could tell he was mad.

          “Where else could I go?” she grumbled.

          “Any great new thoughts?” he asked.

          She made no reply to his sarcasm.  Instead, she walked down the

carpeted hallway to her daughter’s bedroom.

          As expected, eleven-year-old Amy was sprawled on her bed doing homework.  Every night was the same.  Three hours or more.  I know she’s trying her best, but she isn’t a fast reader, she sighed to herself.  This year, her teachers are really piling on the work.  Probably because she has a different one for each subject, instead of one general classroom teacher.  None of them seem to pay attention to how much homework the others are giving. 

But she didn’t tell Amy this, fearing it would only increase her frustration.

          She seated herself on a desk chair next to the bed.  “Anything I can help with?”

          Amy looked up and shrugged.  “No, Mom.  Thanks, but I’m almost finished.  Maybe tomorrow we can take turns reading my English assignment, though.”

          “Sure,” she smiled.  “I like reading with you.”

          “I’m glad, Mom.”

          Amy’s blue eyes shone into hers.  Some days she was so tired and drained from dealing with Jay that she had nothing left for Amy.  This bothered me, but she was trying to do her best. 

 

***

 

         

Later, lying sleepless in bed, she listened to Rick snoring softly.  The sound didn’t really bother her.  She was just envious that he was asleep.  Her mind was whirling around, trying to pray, but her thoughts kept wandering.

Turning onto her right side, produced an angry meow. 

“Sorry, Tiglet,” she whispered.  “Didn’t know you were there.”

The tiger-striped cat they’d been given last year curled up between her knees and arms, in the hollow made by lying on her side.  They had always been cat people, so after Rick’s first cat Tiger died, all of them longed to have another brown-striped cat.  Since this one was a kitten, the name Tiglet came naturally.  He felt warm and cuddly, and the sound of his purring began to relax her.  Still the thoughts kept flowing:

          She remembered when they first noticed Jay squinting his eyes and blinking a lot in kindergarten.  Sometimes his mouth twitched, too.  When they took him to the eye doctor, they learned he did need glasses, but glasses didn’t stop the blinking.  When they asked the pediatrician about it, she said he’d outgrow it.

          The next thing that came along was the constant throat clearing, with clicking sounds interrupting his speech.  About this time, she saw a feature on Tourette’s on one of those news shows, probably Sixty Minutes. That’s when she began to wonder, but no one else noticed.  Maybe I’m being paranoid, she told herself at the time.

          Next they took Jay to an Ear, Nose, and Throat doctor, who said his noises weren’t caused by allergies, and maybe he was becoming a stutterer.  This turned out to be another dead end.  She decided God was making her work too hard at learning patience.

         

How she wished she could go to sleep, to keep these thoughts from carrying her away.  They just wouldn’t stop tonight--like a dam had burst in her mind, with all kinds of old suppressed feelings flooding out.  She kept petting the cat, and he purred.  But her mind reeled on:

          By second grade, Jay’s vocal noises were a disruption in class.  The teacher sent him to the school counselor, who suggested getting a full psychological evaluation.  The nearest child psychologist was over sixty miles away.  Though their health insurance didn’t pay for any of this, they went through with it, wanting to help Jay as much as they could.

          After the psychologist’s long session with Jay, he sent them to a neurologist.  When were they going to get any answers?  The neurologist did a battery of tests, too, including an EEG.  They had to drive over an hour to the doctor’s office for each test.  Jay was deathly afraid of needles, and by the end, he didn’t like doctors either.  After all that, the neurologist said Jay probably had Tourette’s Syndrome. 

If only they’d explained beforehand that there’s no definitive test for Tourette’s, but all they can do is rule out every other possibility.  What an ordeal! she sighed. I’m not sure who it was harder on, Jay, or Rick and me.  I still hadn’t learned enough patience apparently, for this was only the beginning.  The neurologist said we had to wait a year before trying any medication.  I guess they were waiting to see if anything else showed up.  

She knew she’d been hoping for some miracle drug that would make things all better.  But there never was one for Jay.

          Denial set in, especially on Jay’s part.  He wouldn’t even let them use the word Tourette’s around him. She and Rick had to meet with his teachers every year to explain Jay’s condition, to let them know that Jay wasn’t being intentionally bad. 

There are so many misconceptions about Tourette’s.  It was barely even mentioned in the psychology courses I took for my teaching certificate.  She mouthed these words to the cat.

 

Still stroking Tiglet’s head behind the ears, where he liked it best, she mumbled aloud, “I wish I was a cat.  My life would be so much simpler—just eat and sleep.” 

Almost as though he heard her, Tiglet put a paw on her hand.

At this point in her life, she felt a desperate need to get all these scattered memories collected into some kind of order.  Maybe it was a symptom of aging, this need to look back, to try to convince herself that life had been worthwhile.

Right now, the memories bounced around in her mind like popcorn flying out of a pan with the lid off.  Somehow, she must corral them, maybe try to put them on a string, like the popcorn garlands they used to make for the Christmas tree, when Amy and Jay were young.


 


Friday, April 9, 2021

PROCESS OVER PRODUCT

 When I first started teaching outdoor education, I ran across a concept called "The Process Approach to Problem Solving."  It was part of an environmental education program begun by the U.S. Forest Service, who I worked for at the time.  Now that I'm a published author, I find myself reawakening to this idea.

The next place I encountered it was with another outdoor education program called Project Learning Tree.  Their watchwords were: "Teaching people how to think, not what to think."

Later, when I morphed into a music teacher, I found this same concept of "Process over Product" in teaching, too.  Some of the outstanding examples in this field were the Karl Orff Method, the Kodaly Method, Kindermusik, Musikgarten, and others.

As the years have gone by, I've seen how product-oriented our world is.  The perfect performance, the winning team, the income from sales (books or other items), even reaching a certain number of "Followers" on  the Internet are the things that drive our measures of success.

But I think we've missed the boat.  Life is not all a mountaintop experience.  It's a learning process.  As a writer, I most appreciate when someone helps me work on the process.  Because none of us is perfect, and no performance, work of art, book, or symphony is ever perfect.  We're all in process.

Friday, April 2, 2021

That Elusive Thing Called Hope

 Now that I'm approaching my 69th birthday, I find many clothes too tight, and some of my favorites worn so thin that they're almost see-through.  Life is wearing thin, too.  Especially hope.

When I was young, "Faith, hope, and love" were my mantras, in a sense.  Love still hangs on sometimes, but the other two seem to be disappearing like an early morning fog over a lake.  I can remember in my twenties when my hopes seemed to fly above the fog, as if on wings of a swan.  Those days are only memories now.

The "slings and arrows of outrageous fortune" (to borrow from Shakespeare) have taken their toll.  Now whenever a light of hope appears on the horizon, it fades away as soon as I approach it--a mirage.  Well-meaning friends sometimes remind me, "Life isn't fair."  I already know that.  Life is just pain.  To borrow another phrase from The Bard, "Life is a player who struts upon the stage, full of sound and fury, signifying nothing."

Maybe the Christians are right, and our hope is beyond this world, way up in the sky, in that "beautiful somewhere".  But in the meantime, all I can do here is keep muddling along. 

Wednesday, March 17, 2021

HAPPY SAINT PATRICK'S DAY!

 My husband asked me an interesting question the other day.  He wondered why St. Patrick's Day is such a big deal.  "Who was St. Patrick?" he asked.  From the history I've heard, Patrick was the son of a wealthy family in Gaul (now France) who was captured and sold into slavery in Eire (now Ireland).  This happened hundreds of years ago, even before France, England, or Ireland were nations.  After a time, he managed to escape, returned home, and was converted to Christianity.  Then comes the surprising part.  He returned to Eire to witness to those who had enslaved him.  What a great example of loving your enemies!

It is said that the shamrock became an emblem of Ireland because Patrick used the three-leafed clover to illustrate the Holy Trinity.  And since it was green, and the moist climate of this island keeps the fields green most of the year, green came to be identified with the Irish, as well.  

Now, this was all before there were Protestants and Catholics.  There was one Christian church.  The word catholic actually means "one unity", and in the days before the Protestant Reformation, it actually meant just "Christian".  I believe after the reformation the Roman Catholic Church held onto this term as a way to show they believed they were still the 'true church.'

Enter the English, descended from Germanic and Norse (Norman-French) stock.  For centuries they battled and worked to subdue the original inhabitants of the British Isles, the Celts--who we know as the Welsh, Irish and Scots today.  Of course the bloodlines are merged in many places, and it's a fortunate person who can trace any pure line of ancestry now.  For myself, I've found evidence that I'm a mixture of all these bloodlines, with ancestors scattered throughout the British Isles, Germany, and Denmark.

The next stage of Irish history is still in evidence today, with the northern counties of Ireland, called Ulster, still part of Great Britain, while the rest of the island is the independent country of Ireland, called Eire by the pure in heart.  The Irish flag is orange, green, and white--an attempt at unifying the two forces represented by green and orange.

Green is the color Ireland loves, and it's associated with their patron saint--Patrick.  (By the way nearly every day in the calendar commemorates at least one saint.  For example, February 14 is the birthday of St. Valentine, a bishop in the early Christian church.  December 6 is St. Nicholas Day.)    Over the years green came to represent the Catholics of Ireland.

But orange?  This came about because in 1607, King James of the United Kingdom of Scotland and England, who was Protestant, began luring Lowland Scots over to Ulster, offering free land to those who had none.  Thus Ulster is largely Protestant, even to this day.  In the mid-twentieth century there was much sectarian violence between Irish Catholics and Protestants in Ulster.  The legacy of King James outlived him by over 300 years.

The orange came about because a nobleman named William of Orange (in Holland), a Protestant, became King of England because he was married to Mary, a descendant of King James.  I won't go into all the other fighting and strife linked to this, but there's plenty.  We see this pair in the names of our own American colonies, including Maryland, named for this Mary.  There's a college in  the east named William and Mary.  And the town of Williamsburg, Virginia is named for him.

Therefore, since the Irish Catholics had green, the Protestants decided to wear orange.  And there are Societies of Orangemen to this day.  During some periods in the nineteenth century when England was still trying to rule Ireland, the wearing of green was banned.  Some of you may have heard the song, Wearing of the Green, which depicts this.  Similar things were done by England in Scotland, such as the banning of wearing the tartan or plaids, which stood for each Scottish clan.  They also tried to suppress the speaking of the native tongue Gaelic, but in the late twentieth century we've seen a resurgence of  people speaking Gaelic.  Welsh, too.

Now of course, Ireland has finally gained independence from Britain, and the strife in Ulster has abated.  Many descendants of Irish immigrants live here in the United States.  I have ancestors from both Ulster and Ireland.  Rather than a religious observance of an early saintly man who came to share the Gospel with his former enemies, St. Patrick's Day is another day to party, much like St. Valentine's Day.  

I'm glad neither of these saints has been completely forgotten, though.  And today, on Patrick's supposed birthday, I'm wearing green.  I have to add one more note here, though.  My mother, bless her soul, didn't care much for the color green. Her favorite color was orange.  I wonder now if this was some unconscious family heritage she had, for many of her ancestors were among the English and Lowland Scots who emigrated to Ulster and later to America.  But she's gone now, so I'll never know for sure.

Oh, yes, and kids at school still try to pinch you if you're not wearing green.  I don't know where this came from, but I wonder if it was reaction by the Irish who'd been forbidden to wear green.  If they did, they got "pinched" by being arrested and thrown in jail.  At least St. Patrick's day is more harmless now. And so far, I haven't heard anyone saying it's not politically correct.


Sunday, March 7, 2021

A Hard Pill to Swallow

 

It really bothers me that the Church is at the forefront of persecutions.  In fact, as I look at history it very often has been.

First it was Christians persecuting Jews.  Even the great reformer Martin Luther expressed anti-semitic views.  After the Reformation it added persecution of Catholics.  Of course, the Catholic Church also persecuted Protestants.

The next stage was the enslavement of people of color, with all kinds of prejudice against people just because of the color of their skin.  I’m not sure the Church has ever recovered from any of these problems, though some of them aren’t as vocal or in the forefront now.

One that still appears in some church bodies is subjugation of women, making them second class citizens.  In some churches women cannot be pastors, and in some ultraconservative ones women are still not allowed to vote.

Now some churches are leading the campaign against LGBT, which they call ‘Homosexuality.’  They say this is different, that it’s a sin.  I could be wrong, but I don’t see it that way.  These same churches used to be opposed to divorce, but now a divorced and remarried man may become a pastor.  How is that ‘better’ than a gay person who is in a stable, one-partner, committed relationship?

Jesus associated with all kinds of people, and the 'religious right' of his time said he “…ate with tax-collectors and sinners.”  In our time, this could be translated as hookers and homosexuals.  He commanded us to love everyone, even our enemies.  Sure that’s a hard pill to swallow, but I believe he’s asking me to.