Our Journey to a Tourette's Diagnosis

Our oldest son has always been a deep thinker.  Even as a toddler his thoughts were more advanced than other children his age.  His Grammy says he has a wise old soul.  I can honestly say that it is a rare thing to meet a child who is so empathetic and caring.  I can always count on him to put things into perspective or pipe up with something so profound that it shocks me.  He is sweet smart and quite a handsome young man.  I really wish his differences didn't make him feel inferior because we certainly don't see him that way.

By the time he started preschool he was already stuttering quite severely.   We had him evaluated at early intervention.  The first evaluation showed that he had a severe fluency disorder.  During the second evaluation, he was not stuttering as much (he was having a good day) and so did not qualify for services.  When we asked if we should seek professional help with an outside speech language pathologist, we were told that he would probably outgrow the stuttering and not to get stressed about it.  They gave us a pamphlet on how to best handle stuttering in preschoolers and sent us on our way.

Now that I look back on it, there were other subtle things in preschool that should have raised concern.  While he played with the other children and separated easily when we dropped him off, he often refused to do the art projects, had trouble staying focused on a task and would get frustrated very easily.  At the time we just thought it was "part of his personality" and simply dealt with any daily issues as they came up.

In kindergarten, he continued showing trouble focusing in class.  He seemed to get "stressed out" about everything that happened at school.  His teacher tried many things to help him but by the end of the year, we saw only small improvements and his speech had not improved like we had hoped.  There were several times where he hit his head to try and "get the words out".  When he asked us one day why his mouth didn't work, we realized he wasn't going to "outgrow" this and just following the guidelines in the pamphlet, while helpful, were not going to be enough.  We consulted a speech language pathologist and started therapy once a week.  After a couple of months he was almost completely fluent in her office but would start stuttering again as soon as we left.  She told us there was nothing more she could do for him and he should be seen at the school in a more natural environment.

His first grade year, he had a terrific teacher who ran a structured yet caring classroom.  She continued to see some focus issues.  His grades were good but he just didn't seem to have age appropriate motor skills.  In addition his handwriting got messier and messier as the year went on.  He hated loud noises and wasn't transitioning well.  We took him to the local university hospital and had him evaluated at their ADD/ADHD clinic.  After seven hours of testing, they decided his symptoms did not warrant an ADD diagnosis at that time, but they did diagnosis him with "Adjustment Anxiety".  Around this same time, the school performed a stuttering severity scale with him using a variety of settings in which to take their speech samples.  He qualified as having a "severe stutter".  He immediately began getting services at the school and was put on an IEP (individual education plan).   

About halfway through his first grade year, he showed up to school and found out his best friend (his only friend in his class) had moved unexpectedly over the weekend.  He was devastated.  That same day, he fell while running and broke his nose on the dining room table.  They did a CT scan on his face and sinuses to make sure that the nose was healing correctly and we thought all was well.  About a week later, he started scrunching his nose several times a minute.  We thought his nose was just bothering him as it healed.  However, by the end of the school year his nose was completely healed and he continued to "scrunch" almost constantly.   He also began sniffing and clearing his throat.  We consulted his pediatrician about possible allergies but she said there were no other signs of allergies such as congestion, watery eyes, etc.  My husband had his sabbatical that summer and we had purchased an RV that we used to travel around the country.  During the vacation, Sean's nose and throat stuff diminished considerably, as did his stuttering.  By the time we returned home, we had pretty much put those worries on the back burner as we prepared for a new school year.

  Because of his attention difficulties, the school placed him in a first/second grade split classroom with a teacher who was very structured.  This teacher had a reputation as a good teacher and we were hopeful that we would have a great year.  Unfortunately, the teacher's teaching style did not mesh with our son's personality.  His many odd behaviors and focus problems were constantly being pointed out to the class.  The school really stressed public speaking.  Each child was expected to pass two speeches a year.  I had to fight like heck to get them not to grade on fluency.   However, the teacher would still write comments on the papers saying such things like "If you keep trying your delivery will get better." and then proceed to grade him down because of his stutter.  After one such speech our son cried to me that he would never be as good as the other kids. 

As the year progressed we became increasingly concerned.  Our son had begun pumping his arm, coughing, clearing his throat and licking his lips.  After the school called me for the second time in a week saying he "wouldn't stop" coughing and that I needed to come and bring him cough syrup or take him home, I knew something more was going on.   

We consulted the school guidance counselor because it seemed that he was withdrawing more and more.  He was having extreme emotional reactions (crying and saying he was stupid or not worth anything) over things as simple as misplacing his pencil.  When he told the counselor that he thought his only option was to one day kill himself, we decided to seek outside treatment from a psychologist. 

I also began to search the internet for what could be going on.  I tried searching for various things.  Finally, I stumbled on Tourette's Syndrome.  My first thought was, "That can't be, he doesn't swear."  Unfortunately, like many people, I only knew about TS from what I had learned from the media.  Luckily, one of the first sites I found was Tourette's Syndrome Now What? and I started getting accurate information from the start.  As we learned more about Tourette's, we realized that our son had been having tics a lot longer than we had realized.  We just didn't know they were tics.  When we brought it up with his psychologist she agreed and diagnosed him with "probable Tourette's".   As the psychologist began to go back through his behaviors with us, we also realized he had been having obsessive compulsive behaviors and anxiety for quite some time.  At this time, his psychologist also evaluated him for Asperger's but ruled that out for various reasons. 

After school ended, we decided to move over 2,000 miles away to be closer to family.  We quickly sold our house and moved into our new home three days before school started.  Our son stopped eating and lost four pounds in just under two months.  Because of the weight loss along with ketones in his urine, his pediatrician told us to begin feeding him anything he would eat.  He was having a lot of trouble adjusting to the move and he was saying derogatory things about himself.  It all came to a head when he started denying that he stuttered or ticced and withdrew from the family.  Someone, on a message board, pointed out that we were tiptoeing around him and it wasn't a way to have a healthy family.  It is not what I wanted to hear at the time, but when I sat crying and thinking about what had been said, I realized she was right.   I sat down with our son and we had a big talk about what had been going on.  He slowly started to open up to us about his feelings about his TS, his stuttering and the move. 

In addition, he started to relay the extent of the things that had been said and done by his teacher the previous year.  It turned my stomach.  I have since had a friend, who had reason to be in the classroom on a regular basis, tell me that she witnessed this teacher belittling our son often.   I have to admit that I can't say it was a total shock.  I just didn't realize the extent of it and that it was pretty much a daily thing.  I had known that this teacher had called our son a liar (in so many words) in front of the class when our son told him he couldn't stop coughing.  This was after the teacher had been informed it was a tic and couldn't be helped.  When I had asked the teacher about it he had an explanation that seemed reasonable.  I don't think the teacher was a bad person, but I think he wasn't equipped to handle a child with so many problems while we were still figuring out what all those problems were.  Plus, this teacher did not want to be teaching that class and had been forced into it by a principle that he didn't get along with.  That along with some personal issues at home had this teacher in a crisis of his own.  The last week of that school year, when I was waiting outside the classroom door to tell the teacher something, I had caught a glimpse of how this teacher spoke to my son.   By then it was too late.   

Interestingly, during that school year our son's stuttering became so severe that it could take him up to a minute or more (with blocks, prolongations and repetitions) to say a simple sentence.  This is also the period in which we saw the number, frequency, and intensity of his tics at their highest.  I guess it could be coincidence but I have a feeling it has a lot to do with his environment and the feelings of failure he was having at school.  The thing that really bothers me is that I had a gut feeling that something wasn’t right at school but when we would ask our son, he always said things were okay.  The problem was that he didn’t think anything could be an issue with a teacher and so he was sure the problem must have been that he was a bad kid.  That one teacher did more damage to his self esteem in one year than I would have thought possible.  I still feel guilty about not following my instincts or realizing that the things that were making me uneasy were just the tip of the iceberg. 

Our son started his third grade year in the new school with so much residual hurt feelings and anxiety.  With guidance from us and his teacher, he made improvements.  The year, not without problems, was so much better.  I have to admit it took me some time to get used to not getting several phone calls or emails a week about his melt downs and/or his odd behaviors.  When his new teacher would say he was doing okay and not having melt downs, I was initially shocked. 

We have also found a new counselor and a new pediatric neurologist.  The neurologist did some further testing and has diagnosed our son with ADHD inattentive type.  We tried him on Strattera during his fourth grade year and he spend the better part of two months having daily meltdowns and anxiety attacks.  We stopped the Strattera (against the advice of his doctor) when we found him in his room biting himself up and down his arms.  We found a child psychiatrist that has helped get him on some medication that seems to be helping.  Currently, our son is diagnosed with TS, developmental stuttering, ADHD inattentive type and adjustment anxiety.  He also has a lot of sensory issues.  Together with the counselor, the neurologist and the school, we have implemented things to help our son cope.  Having the right people on our side to help has made all the difference.   Because of a job change we have moved again- another new school- more adjustments- more trouble with transitions.  However, he is handling it better than we thought and he really likes his new teacher.  

For now, Tourette's is not the biggest issue facing us.  His tics are pretty mild right now and most people don't even notice.  I think the toughest thing we have to deal with is his very low self esteem.  It is something we have to handle on a daily basis.  We found that being open with him about his stuttering and TS has really helped him understand that he is not crazy, he is not alone and that having these difficulties does not make him any less of a person.  After our son was diagnosed with TS, we noticed that his cousin also has many tics.  It made our son feel better that someone he knows and looks up to has some of the same issues.  After our son was diagnosed we discovered that TS runs on my side of the family and obsessive compulsiveness (which is often linked to TS) is an issue on both sides of the family.

Our younger son, who also stutters, has been diagnosed with at least one tic.  We aren't too concerned about him and probably wouldn't pursue a TS diagnosis unless tics were interfering with his daily life.  He does not have all the emotional and attentional issues that our oldest does.  Quite frankly, if tics and stuttering are all we have to worry about with him, then I am happy.  In addition, our five-year-old daughter has been exhibiting a lot of obsessive compulsive behaviors and sensory issues (I guess the TS/OCD genes run strong with my husband and me).    We are so ahead of the game with her.  We already know what to look for and what to do.  Freeing Your Child from Obsessive Compulsive Disorder and Freeing Your Child from Anxiety by Tamar Chansky have helped us tremendously.  The positive qualities of all our children far outweigh any "issues" we might face.  I  do have a lot of hope for the future.  We have the tools we need and good people on our side.  I am sure their will be struggles for all of us, but TS (or any other diagnosis) does not change who our kids are.  They are beautiful people I am proud to call my children.      

Disclaimer- I am "just a mom".  Every effort was made to insure this information was as accurate as possible.  However, no information found on any website should be substituted for the care of a licensed competent professional.

A WORD ABOUT SPELLING
The official name of the condition, according to the DSM-IV-TR, is Tourette's disorder.
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
You may also see it referred to as the Tourette Syndrome Spectrum Disorder,
but many proponents of this terminology include conditions in this alleged spectrum
which have not been shown to be part of or genetically linked to Tourette's syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, and turrets syndrom.
Tourette's disease is another common misnomer (it's not a disease).
Another common misspelling is ticks: ticks are nasty beasts that bite dogs and people. People with Tourette's disorder have tics.

Thank you to TSNW for permission to use the copywrited wording above and for her countless hours of dedication to Tourette's education. 
Thank you to Haejinn for permission to print her story on how to tell kids about TS (found on the FAQ page).
Thank you to Haejinn, SLeaska, HBool, Glen625,Sabina0815, MaterialDiva, BlueChin and KBurra for their support and help getting this website up and running.  It was truly a collaborative effort.
Thank you  to Teri and Leah for their input and support.  Not only have you helped with this website but you have also supported us through this journey.  Words cannot thank you enough!
A huge THANK YOU to our son  for not only helping with this site but for teaching me more about life,  humility, and humanity than anyone else I know.

Copyright 2006.  All right reserved.
No part of this publication may be copied, re-printed, or used in any form without my prior written consent.
By Cristimo3: Growing Up With Tourette's Syndrome- Information for Kids