‘Worst fears’ and feelings of denial are common with Tourette

I’m a 45-year-old mother, wife and school counselor.  I’ve been married for 19 years and have two children.  My oldest child, son Will, is 14 and in his freshman year of high school. My youngest, Lilly, is 11 and in 6th grade.

Will was about 18 months old when we noticed he was stuttering and stammering.  My mother was a speech pathologist in her professional life, and her advice was to allow Will to speak as he needed and not to address the stuttering with him.

People would often try to be helpful and say, “Just take your time, Will”.  My mom told us we needed to gently request that people not address the stuttering at all.  It was heartbreaking to hear my little boy ask me a question which began “M-m-m-m-mommy?”  But like my mother predicted it most likely would, the stuttering passed.

In time, the stuttering was replaced with eye blinking and squinting.  This lasted for a few months and would kind of come and go.  When Will would get a cough or cold he would clear his throat many times a day.  Then, long after the cough and cold had cleared up, he would continue to clear his throat.  Both of these activities could certainly have been attributed to other causes such as vision problems or allergies.

There was something predictable about the patterns, though.  Having a background in counseling and mental health, I knew in the back of my mind that these were tics.
Still, we took Will to the family doctor.  He diagnosed him with Transient Tic Disorder and explained that in some children it disappears and in others, it simply doesn’t.  It didn’t in Will’s case. Continue reading

Advice needed for angry son going through puberty

I’m Lynn and my son is 12 years old. I’m going through a really hard time with him.  I’m trying to fight the school to have him referred to a theraputic school (and have them pay for it) since I really don’t feel like he is getting (or ever will get) what he needs.  He is a sweet boy who is now getting very frustrated and getting angry, which is scary for me.  Is anyone else fighting the school system?  Is anyone’s son going thru this angry phase??  I would love to talk.

Internet petition circulating to help stop turning Tourette into a joke

The media in all its guises uses the word Tourettes to reference any use of bad language. The inability to control sounds and movements is seen as humorous and indeed with Christmas approaching the books ‘Pets with Tourettes’ has put in a reappearance along with a new ‘More Pets with Tourettes’.

This total lack of understanding of a condition which is debilitating, socially excluding and at times extremely painful shows a lack of intellectual rigor and indeed journalistic laziness. This situation could not happen to people who are in wheelchairs or with a whole host of other conditions.

By signing this petition you will not only be helping us to approach publishers and journalists to change their ways but, if enough people sign, we may be able to start a petition to government to protect people living with Tourette Syndrome to the degree they deserve.

Tourette Syndrome isn’t a joke. Stop making it one. Sign your name here.

Proud mother relishes watching TS twins succeed, enjoy life

My name is Ellen. I am mom to a boy/girl set of twins.  Each of my children have Tourette Syndrome, but they are on different scales. My son, Ben, has had severe TS since age 6. My daughter has a mild form of TS.  I am happy to say that both of them are in college now. But it has been a hard road to reach that goal.

As a family, we never let TS get in the way of most everything in life, whether it was a B’nai Mitzvahs, going to college or traveling. Around age 10, we took our kids out west to the national parks.

While on that trip, my son had the urge to climb up over the fences on cliffs, which meant we had to hold hands and be next to him at all times.  He also would be shouting out animal sounds repetitively a nd at one point almost got hit by a truck while we were at a lookout of the gorgeous mountains. At times, he took a rest or nap since just the time difference knocked him for a loop. On arrival in Wyoming, he slept for 16 hours straight!

TS still makes life challening, but my son’s motivation and joy for life has domineered rather than his limits. He has had the determination and perserverance to be active, be an advocate for himself .  I am amazed about both children’s accomplishments. My daughter has been supportive towards her brother whose needs sometimes took our energy away from her.

The blessing of a diagnosis, even after six long years

This is the third of three blogs today from New Jersey mom SarahG. Her first was on worrying less, while her second was on the decision to homeschool her sons.

Often when I hear other parents tell their TS stories, I hear them talk about how devastated they were when they received their child’s diagnosis.  They were in a state of shock or disbelief, the whole world seemed to come crashing down on them.

On some level, I can sympathize.  I still have days where I find myself grieving for the “normal” child I did not have.  But I have to say, the day we received O’s diagnosis is one of the brighter spots in our journey.

It took us six years to obtain a diagnosis.  We first began visiting doctors and looking for answers when O had just turned 3.  O was 9 when Dr. Cathy Budman confirmed that he had TS.  In the years in between, we went to countless therapists, neurologists, psychologists and pediatricians, all of whom had a different explanation for what was happening.  ADHD was a popular diagnosis, so was Asperger’s Syndrome.

One doctor, instead of a diagnosis, gave us his philosophy of how a diagnosis is something that reveals itself over time.  Try taking that to a school when you are requesting accommodations!  Medications were offered, with terrible results.

Friends, relatives, other parents and random passers-by offered advice, diagnosis and criticisms.  Daily beatings might help, said one.  Set clearer expectations, said another.  Be more lenient.  Use positive language.  One “friend” was convinced that there was nothing wrong with O — the problem lay with me.  So word was spread that I had Munchausen by proxy syndrome. Continue reading

Forging Our Own Path: The decision to homeschool

This is the second of three blogs today from New Jersey mom SarahG. Her first was on worrying less, while her third — to post later this afternoon — will focus on diagnosing Tourette Syndrome.

When my son, O, was 3 years old, our pediatrician advised me to put him in preschool, because “95 percent of children attend preschool,” and if O missed out on the preschool experience, he would forever be at an academic disadvantage.  Naturally, I did not want my son to start school at a disadvantage, so I placed him in the best preschool I could find.

At the time, O’s first tics already were beginning to manifest themselves, although it would be several years until we realized exactly what was happening.  All we knew then, though, was that he was “a real handful.”  Even if he did not learn anything in preschool, there was something to be said for getting that little bit of a break from parenting the human tornado.

Two years and many headaches later, my husband and I removed both of our children from preschool.  As it turned out, O’s teachers had little patience for the challenges he presented and no visible interest in learning why he was the way he was. At first they attributed O’s differences to my lack of parenting skills.  Once my younger son, B, a model student, enrolled in the school, the teachers decided the problem simply was that O was a bad kid.  For O, that meant that his situation went from bad to worse.

When I picked O up each day, he either was in a rage or was sobbing uncontrollably.  He was sent out of the classroom when there were visitors so he would not reflect poorly on the school; when he misbehaved, he was put in the janitor’s closet in the office or confined to a chair and not allowed to move.

Disciplinary policies such as modeling good behavior were suspended for O.  Respect for privacy and confidentiality went out the window, as the teachers publicly mocked O and complained loudly about him to me in front of other parents.  One day, I stopped by the school at lunch to pick up my younger son.

From the other side of the school, I could hear an adult screaming and a child sobbing ; a parent volunteer was unloading her wrath on O for something he did not do.  The school staff defended her actions because O was “so difficult.”  That was our last day of school. Continue reading

Homeschooling mom trying to worry less about two sons with TS

This is the first of three blogs today from New Jersey mom SarahG. Her second and third entries, to post this afternoon, will focus on homeschooling and diagnosing Tourette Syndrome.

I am the mother of two boys who are known as “O” and “B.”  “O” is 15 years old and has TS with ADHD and OCD.  For years, our biggest challenge was O’s ADHD, which is severe.  In the past few years, the tics have increased in severity to the point where people who see the tics think O is having a seizure. B is 12; his issues tend to be sub-clinical, but they are there.  B also has the challenge of being O’s younger brother.

As far as we know, O’s tics first manifested when he was 3 years old.  I say “as far as we know” because that is when we first recall noticing tics.  O was an extremely challenging child from birth.  It took us six years, many doctors and much heartache to obtain the TS diagnosis.  We continued to travel from doctor to doctor in the ensuing years as we tried to find medications and/or therapies that might help.

Our experiences with medical professionals generally have been negative.  O’s case is particularly challenging and unique, and it has been difficult to find people who are capable and willing to work with and listen to us.

Where we find ourselves today:  O has been off all medications for nearly four years.  His ticcing is severe at times, but the choice to remain medication-free is his.  O and B have been homeschooled for the last 10 years – a decision prompted by a disastrous preschool experience and our realization that O’s needs were too unusual for a school to accommodate.

O has accepted his TS as part of who he is.  He endures the pain of his tics, he advocates for himself, tries to educate others, and does not let his TS stop him from reaching his goals.

As for the rest of us, well, we have tried to accept the TS as part of our family, too.  Life has evened out somewhat with time and maturity.  I have tried to let go of much of my anger toward people who have mistreated O and the family because of O’s TS.  I have grown a thick skin.  I try to worry less.  A bit of mourning for the “normal” family life I thought we would have remains with me always.

What you can expect from my future posts: thoughts on homeschooling; how we came to the decision to stop using meds to manage O’s issues; thoughts about the future, as college is on the horizon; how TS affects the way people react to and interact with us; our adventures and misadventures with members of the medical community; caregiver stress; stress in general; a bit of that residual anger.

Laughter, new medication helping family cope with 11-year-old son’s TS

When I picked Ethan up from Nanny McPhee, as we’ve come to refer to her, she handed me our farewell note. After 18 months of watching Ethan daily, our seasoned daycare provider and mother of four — with tween-age children of her own — wrote this before our move to New Jersey:

I didn’t think we were going to make it. He was a challenge, but we made it.

Sterile and hardly worth saving, her note that I kept in Ethan’s baby box reminds me of how I resented her insinuations that Ethan was overindulged and spoiled, and that he was difficult because we gave in to him to easily.

In truth, we were meticulous with a schedule, had read all the baby books, and still couldn’t manage to live peacefully with Ethan, and she reminded me almost daily when I picked him up after work just how long he had cried or how fussy he had been.

It wasn’t until my second child was born that I realized Nanny McPhee, as judgmental as she was, had gotten something right: Ethan was needy, sensitive and impossible to console. To call him a challenging child was an understatement of epic proportions.

When we got our phone number after our move, it included three consecutive 6’s and we would joke that, at least we would remember our phone number, as it matched the mark on our son’s forehead. And whenever my husband or I asked the routine question of each other, “Did anyone call today?” one or the other would quip, “Rosemary called, she wants her baby back.”

Even today, as Ethan approaches his 11th birthday, we laugh in an attempt to make light of a serious and difficult life for our son and our family — and there is no doubt that laughter helps. Continue reading

TSParentsOnline Special: “That’s Just My Tic”

Andrea Frazer and her son, who has TS.

The New Jersey Center for Tourette Syndrome would like to welcome accomplished national blogger Andrea Frazer to TSParentsOnline. Frazer is a produced television writer who just finished up a three-year marriage column with Good Housekeeping. She also wrote five days a week for three years for the national parenting website BabyCenter.

It was this blog post on Tourette Syndrome with 162 responses that prompted her to start her own website where she writes three days a week on tics. Come say hello to her at Happily Ticked Off and share your own experiences! 

My son was diagnosed with Tourette Syndrome at 4. What began as minor shoulder shrugs and blinks morphed into head nods and throat clears over the course of six months. While none of his symptoms ever reached what I’d call extreme, my reaction certainly was. I was devastated. I could not stop crying. I was heartbroken. More than anything, I was confused.

“I don’t understand,” I’d wail to my husband the moment he’d come home from work. “One moment we’re taking him to the park and playing with finger paint, the next minute we’re visiting neurologists and getting him an MRI to rule out seizures or tumors. It isn’t fair!”

My husband, to his credit (and my complete and utter bafflement) was cool as cucumber. To him, our son was still “Stink:” lovable, quick to laugh, silly, empathetic and bright as hell. “A few coughs aren’t going to diminish his future,” he’d assure me.

“No, a few coughs are no big deal,” I’d quip back. “But what if it gets worse? What if he starts cursing and screaming and has behavior problems so severe we have to home school him and we can’t take him to a movie for fear he’ll ruin every other person’s experience because he’s JUST SO UNCONTROLLABLY LOUD.” Continue reading

‘Ben’ proves Tourette is more than just Tourette … it’s the other conditions, too

Our journey with TS started when Ben was very young.  I’m not sure that I can give an accurate account of his TS without explaining the other conditions that seem to be part and parcel of his TS.

It is sometimes hard to sort out what category a particular behavior belongs to.   In the end, it really doesn’t matter.  What I want for Ben (not his real name) is for him to understand and accept who he is, to feel happy and confidant, and know that he can achieve whatever he sets his mind to.

Always a mover and never a sitter, we enjoyed Ben’s playfulness and sense of humor, even as a toddler.  He didn’t seem to be able to rein himself in, though, and he spent many a minute in the time-out chair in the kitchen when I just didn’t know what else to do.  Once he found out that an ordinary kitchen chair could be used as a jungle gym, he perfected the art of hanging upside down on it.

During his early years, I also had countless positive reinforcement charts for behavior modification, addressing one behavior at a time – brushing his teeth by himself within the third time of being asked, not interrupting his older sister each and every night as she was recounting her day at school so that we could avoid dual meltdowns at the dinner table, earning points for a set amount of TV time so that I could turn off the TV without having him throw a temper tantrum, and so on.

And at the end each day, when winding down was just not an option for Ben, a nice, long bath was always the answer.

In kindergarten, I noticed that he had some difficulty with his letters, and by first grade I pushed for him to have academic intervention in reading.  His first-grade teacher was a gem – she would put Ben in the hall and ask him to run 10 of his fastest laps.  When Ben would return to class, she would ask him if he was now ready to start math.  She modified his work so that he felt success, and he progressed nicely.  But yes, still a “bit” wild.

So I brought him to a developmental pediatrician who diagnosed him with ADHD, and we got a 504 plan for him.  My husband and I did not want Ben to be thought of as a “bad” kid – he had impulses that he couldn’t control and we wanted the school to recognize that. Continue reading