Fall 2009 Vol 3, Issue 2
  Bonne Nouvelle
Your "Good News" from TSA of Texas

TSA of TX:  Helping Children and Changing Lives 

Tourette's syndrome is a neurobehavioral (brain-based) movement disorder characterized by motor and vocal tics.  Beginning in childhood, it causes those affected to make movements and noises they cannot control.  Additionally, many are plagued by obsessive-compulsive disorder, attention deficit hyperactivity disorder, oppositional behavior and other disorders.  Although medication may help control the symptoms, as of yet there is no cure.  TSA of Texas, one of the largest chapters in the country, is a 501(c)(3) non-profit organization.  We directly assist Texas area families and children in crisis, 24 hours a day, 365 days a year. 

A Note from the President 

Brenton Brister & Team    Ethan's echolalia and coprolalia tics (repeating of words and swear words) have been worse than normal lately. This morning, as I worked from my home office, Ethan had been helping his mother carry out some clean up chores around our home. He's never really all that happy when he has chores to do, but his reward was one of his favorite pastimes, getting on the computer to YouTube and watching Yu-Gi-Oh! videos. As he began to finish up from helping his mom and trying to get to the computer, his vocal tics started to come on strong. By the time he was sitting at the computer and logging on, he shouted to me the question... "Why are my tics happening so much, dad?" We had noticed his vocal tics, which have always been there, but had slowed down over the last year, seemed to be coming on more lately and we found ourselves asking each other, "Why might this be happening?"
     My thought process was interrupted by another plea for help from Ethan as to "why" he was ticcing more than normal, when he received no response from his first plea... and here is the problem we as parents who have children with TS have, what do we answer??? This thing we've come to know as Tourette's syndrome is as much a mystery for us as it is for our children.
     Most of us likely can remember being young and growing up in our parents' home. When we asked our dad or mom a question, they seemed to always have the answer, or at least that's how it seemed to me as a small kid. When I became a father and my boys asked me questions, I wanted to be like my dad, so I had an answer for them. UNTIL - now!
     I've tried to learn and research all I can about TS in a hope to try and help our boys. It was along that journey, that I found out I have TS myself.   So... more questions with few, if any answers. What's my point? Don't beat yourself up if you don't know the answer. Even the doctors out there who work with our TS kids tell us they don't know all the answers as well. They can give us the latest statistics and they know the latest on medications that might help our children. Together, we (parents and our doctors) will continue to work to help our children lead successful lives even though we don't have all the answers. That doesn't mean we stop in our desperate search to find answers; but, along the way, we need to stop and talk with our children and let them know, that even if we don't have the answers, we have each other.
     Our family is our answer. We live, work and make our way through this life together and all along that way we make choices. To be discouraged or not to be? To be negative or not to be? To get angry or not to be? These are all things we have to answer each day while living and helping our children with TS. Again, don't beat yourself up - we all have good days and bad days... which is why we need to take one day at a time and not get caught up in thinking, "It's always going to be like this," because it's not! And remind yourself you are making a difference in your child's life.
     I replied back to Ethan's question, by asking him if he was more anxious, nervous, or worried about something, or had he eaten something that he didn't normally eat, to which his response was, NO! So, I reminded him to do his deep breathing to get the blood flowing to his brain, think of something relaxing, and see if that would help. Before long, with his headset on and laughing as he watched his Yu-Gi-Oh! Video, his vocal tics had completely stopped... for now. And as he would say - "Everything's good, it's all good."
 
Hang in there,
Daryl

In This Issue
From the President
Texas Support Groups
Save These Dates!
3rd Annual Museum Day
Holiday Tree Display
AlleyWays Outing
January Gala
Tics, Tourettes and ADHD
Job Interviewing and TS
Transferring Schools with an IEP
Youth Ambassador Program
New Resources Available
TSA Can Assist with School Needs
New Twist on Palilalia
Tee-Off for Tourette
Thank You Supporters!
"Bonne Nouvelle"
Join our Mailing List!
Texas Hotlines
Houston:  281-238-8096
Toll Free:  866-894-8686
Emergency Pager: 800-209-0796
Quick Links
Texas Support Groups
TSA of Texas has support groups in AustinDallas, Fort Worth, East Texas/Golden Triangle, Gulf Coast, Katy, North Houston and San AntonioLearn More>>To start a support group in your area, please contact us toll free at 866-894-8686.   
Save These Dates!
  • November - Visit a favorite Texas museum and meet other families dealing with TS.  More details in article below.
             Austin - Blanton Museum of Art on November 15
             Beaumont - Fire Museum of Texas on November 21
             Dallas - Museum of Nature and Science on November 15
             Houston - Houston Museum of Natural Science on Nov. 15
             San Antonio - Witte Museum on November 15
  • November 30, 2009 - Holiday Tree decoration at Houston Museum of Natural Science.
  • January 16, 2010 - Houston outing to Alley Theatre's "Wonderland."
  • January 28, 2010 - TSA of Texas Annual Gala.  More information coming soon.
  • January 29 & 30, 2010 - Sue Conners will be giving a free presentation in Dallas on TS in the classroom.  More information coming soon. 
  • March 2010 - TSA of Texas 8th Annual du Ballon Rouge children's camping weekend.  More information will be available soon.  Watch our website for details and applications.
  • April 13 - 15, 2010 - Third Annual Youth Ambassador Training for teens and their parents in Alexandria, VA.  Contact tourettetexas@aol.org for an application.
  • April 15 - 18, 2010 - TSA National Conference in Alexandria, VA.  Click here for more information.

Join TSA of Texas for our 3rd Annual Museum Day

Choose your favorite Museum from the list below - lots of great possibilities!
 
ALL Museum Tickets are FREE to our families with TS, but are by prior reservation ONLY.
RSVP to Cindy by November 12 (November 17 for Beaumont) at TouretteTexas@aol.com.  Include the Museum/City you wish to attend, your name, phone number, the number of children, and the number of adults attending.
 
Brenton Brister & TeamAUSTIN:  Blanton Museum of Art
Sunday, November 15
1:00 - 5:00 pm
 
The Blanton Museum of Art at The University of Texas at Austin is one of the foremost university art museums in the country, and has the largest and most comprehensive collection of art in Central Texas. The museum welcomes and engages all visitors by offering personal, extraordinary experiences that connect art and ideas, reaching within and beyond the university to stimulate the thriving, creative community that is Austin, Texas. The Blanton's permanent collection of more than 18,000 works is recognized for its European paintings, an encyclopedic collection of prints and drawings, and modern and contemporary American and Latin American art.  Located at the intersection of Martin Luther King Jr. Boulevard and Congress Avenue, the museum is across the street from the Bob Bullock Texas State History Museum and is adjacent to downtown Austin.  For more information, visit www.blantonmuseum.org.
 
Brenton Brister & TeamBEAUMONT:  Fire Museum of Texas and Cardinal Boat Tour 
Saturday, November 21
11:00 am to 3:00 pm
 
Begin your day at 11:00 am by joining us for a picnic lunch at the Fire Museum of Texas in Beaumont.  Bring your own lunch; TSA will provide drinks and some snacks.  Next, enjoy a special tour of the Fire Museum of Texas, 400 Walnut Street in Beaumont.   Dedicated to the preservation and education of the rich history of the fire fighting service, fire prevention education and fire safety, the Museum is housed in a working historic 1927 Central Fire Station.  Visit www.firemuseumoftexas.org.  Finally, enjoy a leisurely boat trip from 1:00 pm to 3:00 pm on the ecologically diverse Neches River. The Neches has been called "The Last Wild River" in east Texas. A comfortable, open boat, the Cardinal, showcases this beautiful river with its unique ecosystem and dense bottomland forests of hardwoods and pine trees.  The Neches is home to more than 200 tree species, 47 mammals, 300 birds and many reptiles and amphibians. As you view nature at its best, you will learn the history of the river and its vast and diverse ecosystems. Visit www.lulearn.com.
 
Brenton Brister & TeamDALLAS:  Museum of Nature and Science 
Sunday, November 15
12:00 to 5:00 pm 
 
The Museum of Nature and Science is Dallas' premiere museum of North Texas history, culture and natural science. Your visit includes the new spy skills exhibition: "The Science of Spying."  The Museum also offers permanent exhibits that include prehistoric Texas history, mineral collections, wildlife dioramas, and even some live animals!  Other exhibits include the Lagoon Nature Walk, Paleontology Lab and more.  In addition, you will see an IMAX film on the Museum's 79 foot tall domed screen --  the 3:00 pm showing of "Dinosaurs: Giants of Patagonia" - which takes the audience on an unprecedented and unique journey into the world of the largest known dinosaurs.  Museum information is available at www.natureandscience.org.
 
Brenton Brister & TeamHOUSTON:  Houston Museum of Natural Science 
Sunday, November 15
12:00 to 5:00 pm 
 
If you attended last year's Museum Day, you know your family is in for a great time!  Take your time visiting all the regular exhibits in the Museum such as the Paleontology Hall, Weiss Energy Hall, Welch Chemistry Hall, Gems & Minerals and more!  PLUS, choose your favorite: either the gorgeous Cockrell Butterfly Exhibit or the always exciting IMAX at 2:00 pm to see "A Christmas Carol," a special 90 minute film starring Jim Carrey.  As in past years, we will have a conference room reserved for us to rest, mingle and snack on cookies and drinks.  Or buy your own meal at the Museum McDonald's and then join us in the conference room.  Museum info is available at www.hmns.org
 
Brenton Brister & TeamSAN ANTONIO:  Witte Museum 
Sunday, November 15
12:00 to 5:00 pm 
 
Explore the special exhibit "Circus Folk: Secrets Behind the Big Top", plus all regular exhibits, such as the H.E.B. Science Treehouse, Mummies: Unwrapping the Past, World of Water and more! The Witte Museum is San Antonio's premiere museum of South Texas history, culture and natural science.  Located in Brackenridge Park, the Witte offers permanent exhibits that include dinosaur skeletons, cave drawings, wildlife dioramas, and even some live animals!  Several historic homes have been reconstructed on the campus, which also features the very popular H.E.B. Science Treehouse.  Changing galleries include Texas artists, textiles and showcase exhibits, some locally produced and some traveling national exhibits.  Bring a lunch or snack and eat on the beautiful grounds of the Museum.  For more information on the Witte, visit www.wittemuseum.org. 

Holiday Tree Display at Houston Museum of Natural Science

Brenton Brister & Team     A huge thanks to the Houston Museum of Natural Science for inviting TSA of Texas to participate once again in its annual Holiday Tree Exhibit.  Select non-profits are chosen by the museum to decorate 10-12 foot live firs, which are then displayed in the Museum Grand Hall through the Holidays (see our 2008 "Mardi Gras" theme in the picture to your right).  TSA of Texas' theme this year is "Deep in Our Hearts in Texas," a red, white & true-blue Texas-sized way to promote TS awareness and to showcase our work with children with TS.    Join us in decorating our tree on Monday, November 30 at the museum, or take your family to the Houston Museum of Natural Science between November 30, 2009 and January 4, 2010 to view all trees in the exhibit.

AlleyWays Outing

Alley Theatre Outing     Eleven happy TSA of Texas adults enjoyed a delightful Sunday afternoon in October at the Houston Alley Theatre's performance of "Our Town," followed by pizza and discussion after the play.  The Alley Theatre's AlleyWays Program allows TSA of Texas to purchase certain Alley tickets at a deep discount and then donate them "first come, first served" to you!  Our next Alley outing will be January 16, 2010, a 2:30 pm performance of "Wonderland," a musical based on "Alice in Wonderland."  Contact Cindy at TouretteTexas@aol.com for more details.

January Gala:  Deep in Our Hearts in Texas

Brenton Brister & Team     Our annual fundraising gala will be held January 29, 2010 at the Houston Country Club.  A festive evening of reception, dinner and silent auction, Gala is THE major fundraiser of the year for TSA of Texas.  It provides us with funds needed for events, camp, in-service, support groups, direct client services and more -- throughout the entire state!  This year, more than ever, we need your support!  This year's theme is "Deep in Our Hearts in Texas" and we hope you will open your Texas-sized heart!  If you have ever considered attending gala or making a cash donation, do it now!  Or - help us solicit corporate sponsorships and tables.   Perhaps you can gather items for auction.  Every bit you do helps us all.  Contact Cindy at TouretteTexas@aol.com for more details.
Tics, Tourettes and ADHD (Part 2)

Dr. Gary BergmanBy Gary J. Bergman, M.D., F.A.A.P.

      This is the second of a two part discussion on tics, Tourette syndrome and ADHD.  In the last newsletter, some of the issues of treating individuals who has both tics and ADHD with the traditional stimulant medications of methylphenidate (ex. Ritalin, Concerta, Daytrana, Metadate, Focalin) or amphetamine (ex. Dexadrine, Adderall, Vyvanse) were examined.  In this article some other treatments and issues will be discussed
     Despite the fact that the stimulant medications are the most efficacious medications for treating ADHD in persons with or without tics, it has been reported that the most common drug prescribed in this country for children and adolescents with TS to initially treat their ADHD (or even their tics) is clonidine (Catapres) or, more recently, a related compound, guanfacine (Tenex).  These medications are not very effective for the treatment of either ADHD or tics, but they are relatively safe and have not been felt to increase tic severity. It has been observed that these medications may decrease tic severity by as much as twenty-five percent.  In some individuals the improvement might be greater and in others, less or not at all.  The major drawback, especially with clonidine, is that these medications can cause sedation and cognitive dulling.  Not exactly the type of side effect one desires in a child with ADHD or, for that matter, in any child.  Actually, because of its sedative properties, clonidine may be prescribed to treat the insomnia side effect sometimes seen with stimulant therapy.
     Another, medication to treat ADHD and FDA approved in 2003 is atomxetine (Strattera). Although this drug was initially touted as not increasing tics, subsequently there have been occasional reports that it does. In fact, just this year, the FDA instructed its manufacturer, Eli Lilly, to stop promoting it as a "tic-free" medication.  Additionally, although there was much promotion of and excitement about atomexitine when it was first released, it has not seemed to be as effective in treating ADHD as once hoped.  Many physicians only prescribe it as a back-up or second-line drug.
     Another drug that has been very occasionally used in the treatment of ADHD is bupropion (Wellbutrin).  This medication is an anti-depressant and not specifically indicated for the treatment of ADHD.  It is of questionable efficacy but is occasionally prescribed by some physicians when other medications fail or have intolerable side effects.  Another drug, modofinil (Provigil), originally developed for the treatment of narcolepsy, has been studied for the treatment of ADHD and initially showed some promise.  However, the FDA refused to approve it for this indication because during the drug trials several cases of Stevens-Johnson syndrome, a significant and potentially life-threatening side effect, were reported.  The FDA concluded that the risk was too high to justify approval.  In spite of this and allowed under FDA statutes concerning off-label use, some physicians are judiciously prescribing modofinil with anecdotal reports of some good results.
     There are other alternative or complimentary treatments being advocated by some.  These include optometric interventions such as special glasses and vision therapy.  The American Academy of Pediatrics and the American College of Pediatric Ophthalmology and Strabismus Surgery have both published policy statements against recommending these therapies as there does not seem to be any credible, scientifically valid studies to support their efficacy. Additionally, biofeedback, hypnosis, magnet therapy, homeopathic remedies, and other alternative medications, including omega 3 fatty acids, have been touted and promoted, especially on the internet.  Although one often hears claims and testimonials of remarkable improvements or cures for many non-traditional therapies, all have yet to be proved to be effective by rigorous scientific study and many have been proved to be totally ineffective. And although some of these methods may seem safe and innocuous, others may not be without risk.
     Another diagnostic and treatment method being touted is the use of brain SPECT (single photon emission computed tomography) and PET (positron emission tomography) scans to diagnose and help direct the choice of medication in the treatment of ADHD. Unfortunately, these radiological scans are still very much research tools and have yet to be proved to be useful in clinical practice.  Although the scientific explanations sound convincing and the pictures look impressive, the claims about the efficacy of using these kinds of studies are currently not warranted as noted by most reputable specialists, researchers and organizations in the field.  Additionally, the work-up is expensive and not usually covered by most health care insurance plans.
     Finally, when evaluating any child for ADHD, the medical professional must also consider other disorders that can masquerade as ADHD or co-exist with ADHD.  These include conditions such as depression, anxiety, OCD and sleep disorders.  One can imagine that if a child is sad, worrying, obsessing over something or not sleeping well, he/she may not be able to pay attention in the classroom, concentrate while doing homework or may become frustrated and moody and perform what appears to be impulsive acts.
     In conclusion, if one is a parent of a child with Tourette syndrome and possible ADHD, or an adult with Tourette syndrome and ADHD, ensure that the professional providing the evaluation and potential treatment is fully knowledgeable and experienced in all the issues discussed above.  Although I would encourage one to start with a recommendation from one's own primary care physician, often he/she may have their own bias or may not be well informed about the issues or know the appropriate people to which to refer.  Do your homework.  Consider contacting a specialist affiliated with an academic medical center or check with advocacy organizations such as TSAGW, TSA and CHADD.  Be careful of claims on internet websites.  Failure to find the right professional could result in an incorrect diagnosis, inappropriate and/or inadequate treatment and, most importantly, continued difficulties in school, at home and/or in the workplace.  Proper diagnosis and treatment can make tremendous difference for an individual and his/her family.
  
     Please note that the views and opinions expressed above are Dr. Bergman's, not those of TSA of Texas, and are intended for informational and educational purposes only.  The information is not intended to replace professional advice from one's own physician.  With respect to treatment, you should contact your own medical provider(s).  There are no express or implied warranties or representations of any kind regarding any of the information above.  Dr. Bergman and TSA of Texas disclaims all liability of any kind for the content of any information transmitted to or received by any individual or entity in connection with such individual or entity's use of this article and does not endorse or recommend in any way any such information.
Job Interviewing and Tourette Syndrome 
by Melinda Dunaway,
TSA Birmingham Support Group Steering Committee
 
     Job hunting!  Interviews!  Starting a new job!  It can all be so stressful for anyone that is looking for work.  Add a noticeable neurological disorder and you can double that stress.  If you are one of the 12 million or so people in the U.S. looking for a job - you know that the job hunting process itself is a full-time job.  If you have Tourette Syndrome - you have unique concerns to consider in this process.
     There are basic interview tips for all interviewees such as
1) Always arrive 5-10 minutes prior to your interview
2) Research the company you are interviewing with and know as much as you can about their history, what they do and their culture & values (e.g., web site, articles or Annual Report.)
3) Dress for success
4) Make good eye contact
5) Prepare good questions to ask about the company and the specific job duties
6) Follow-up with a thank you card or email.
     In addition to the basics, a person with Tourette Syndrome has so much more to prepare for.  Anytime there is a  situation that may be a distraction to the interviewer, it is best to address this during the interview so there will be no question or doubt in the interviewer's mind.  You don't want to leave an interview and have the hiring manager wondering, 'why did this person roll his eyes at me repeatedly?'.  If the interviewer is busy trying to figure out your tics, he may be unable to truly evaluate your experience and skills during an interview.
     How do I approach this awkward moment in my interview?  Honesty is the best policy.  If your tics are not noticeable, then you probably have no reason to bring up your TS.  If they are, you must address the situation.
     If your tics are verbal or make it difficult to communicate over the phone, do most of your communication (prior to your interview) by email.  The less time on the phone - the less time for your tics to be noticed.  If phone calls are necessary and your tics are obvious on the call, you may have to address it over the phone.  Your goal is to get the interview.  Once you get in front of the hiring manager, he/she can get to know you and fairly evaluate your skills.
When you get the interview, it is your time to shine!  In order to keep the tics from being a question in the interviewers mind, explain it early in the conversation.  It may go something like this:

Interviewer: "Mrs. Jones, thank you for coming in today to meet with us about the Accounting Clerk position"

Candidate: "I appreciate your time and am very excited about this opportunity.  I would like to let you know that during our meeting, you may notice that I move my head a lot and snap my jaw open.  This is caused by a neurological condition I was born with called Tourette Syndrome.  Have you heard of it?  (Allow them time to respond and ask questions)  My TS has never stopped me from accomplishing my goals or being a great employee.  My TS will not affect my job performance."

     As with any situation, once an individual has been made aware that you have Tourette Syndrome, the ball is in their court.  It is up to them to decide whether or not to let that be a barrier.  It is completely out of your control at this point.  Do not waste your energy trying to persuade someone to accept you.  If a potential employer, potential friend, or potential relationship of any nature cannot accept your TS, you do not need that person to be a part of your life.  That is not the kind of relationships to strive for and not the kind of employer you would want to work for.
     Many people have had successful careers with their TS in tow including teachers, surgeons, motivational speakers, actors, musicians, and athletes just to name a few.  Remember to remain confident in your abilities and not let TS stop you from finding the job you were meant to be in.  
 
Melinda is a local Technical Staffing Specialist helping people find employment for the past 10 years.  As part of her job, she coaches candidates on interviewing and making the best impression.  Melinda is also the proud mother of a son with Tourette Syndrome.  Specific job hunting/interviewing questions can be emailed to Melinda at ts_parent@yahoo.com
Transferring Schools with an IEP
Kathy Giordano
     Here is what IDEA 2004 says, quoted directly from Wright's Law: Special Education Law, 2nd Edition, pages 102-103:
 
Transfer Within the Same State
If a child with a disability (who had an IEP that was in effect in a previous public agency in the same State) transfers to a new public agency in the same State, and enrolls in a new school within the same school year, the new public agency (in consultation with the parents) must provide a free appropriate public education (FAPE) to the child (including services comparable to those described in the child's IEP from the previous public agency), until the new public agency either:
Adopts the child's IEP from the previous public agency; or
Develops, adopts, and implements a new IEP that meets the applicable requirements in 34 CFR 300.320 through 300.324.
[34 CFR 300.323(e)] [20 U.S.C. 1414(d)(2)(C)(i)(I)]

Transfer Outside State
"In the case of a child with a disability who transfers school districts within the same academic year, who enrolls in a new school, and who had an IEP that was in effect in another state, the school district shall provide such child with a free appropriate public education, including services comparable to those described in the previous IEP, in consultation with the child's parents until such time as the district conducts an evaluation, if determined to be necessary, and develops a new IEP, if appropriate, that is consistent with Federal and State law."
[34 CFR 300.323(f)] [20 U.S.C. 1414(d)(2)(C)(i)(II)]
 
To Facilitate the Transition for a Child:
The new public agency in which the child enrolls must take reasonable steps to promptly obtain the child's records, including the IEP and supporting documents and any other records relating to the provision of special education or related services to the child, from the previous public agency in which the child was enrolled, pursuant to 34 CFR 99.31(a)(2) [Family Educational Rights and Privacy Act regulations regarding conditions under which prior consent is not required to disclose information]; and
The previous public agency in which the child was enrolled must take reasonable steps to promptly respond to the request from the new public agency.
[34 CFR 300.323(g)] [20 U.S.C. 1414(d)(2)(C)(ii)]
 
TSA does not endorse Wrights Law, but it sometimes provides helpful information regarding special education law.  Thank you to Kathy Giordano, National TSA Education Specialist, for providing this information.
Now Accepting Applications for the Youth Ambassador Program
     
     TSA of Texas is now accepting applications from motivated, involved teens and their partnering adult.  This is an excellent opportunity for interested teens to learn public speaking, build friendships with the other teens involved with the program, and represent the TS community by raising awareness through the many Youth Ambassador Program activities.
  
What is the Youth Ambassador program?
The TSA Youth Ambassador Program gives young people with TS, their siblings, friends and classmates the preparation they need to speak about TS before their peers at school, sports leagues, scout troops, camps and after school programs.  Understanding and tolerance are the program's goals.
 
What is the TSA Youth Ambassador Leadership Training?
The TSA Youth Ambassador Leadership Training is a two day comprehensive program aimed at training exceptional teen leaders and their accompanying parent/adult guardian to become TSA Youth Ambassadors.
 
The preliminary agenda includes:
- support on public speaking
- guidance on how to present the program and presentation logistics
- participating in TSA's annual Trip to the Hill, including Congressional Briefing
- ice breakers and other fun activities for the teens
 
Who should apply to attend the TSA Youth Ambassador Leadership Training?
Teens 13 years of age and up with or without TS can apply, as long as they are committed to the goals of the program and want to help promote understanding of the disorder.  Also, the partnering adult does not need to be the teen's parent - they can be another responsible adult who has the consent of the parent.  Participation in the Youth Ambassador Program, requires a strong commitment from both the teen and the parent/adult guardian to take the time to be trained and follow through on the program's responsibilities.
 
What are the April 2010 Training logistics?
Dates:      April 13-15, 2010
Location:  Hilton Alexandria Mark Center, 5000 Seminary Road, Alexandria, VA
Costs:      The estimated expense items include hotel for 2 nights, program and meals, materials and Trip to the Hill Transportation, airfare and any additional expenses for non-conference related meals and activities.  Some small scholarship may be available to help with some expenses.
If you would like an application, please contact tourettetexas@aol.com.  All completed applications need to be received by TSA of Texas no later than 11/30/2009 for review.  
New Materials Available on National TSA Website
     There are a number of new resources available on the TSA national website:
 
Information from the International Scientific Symposium on TS
     In June, TSA brought together 250 delegates and internationally renowned scientists, clinicians and other experts from 17 countries, including Argentina, Belgium, Canada, France, Germany, Iceland, Israel, Japan, South Korea and Spain, to share and discuss the latest research into and treatments for TS.  Fields as wide and diverse as genetics, neuroimaging, neuropathology, epidemiology, neuroimmunology and the use of cognitive behavioral therapy for reducing tics were all covered during the course of the conference.  Summaries from each session of the Symposium are now available at http://www.tsa-usa.org/Z_IntSciSymp5/IntlSciSymposTS5_contents.html.
 
Videos Help Physicians Recognize, Diagnose and Treat TS
     In these brief, informative and valuable videos, Dr. John T. Walkup, Chair of the TSA Medical Advisory Board, offers clear discussion and shares proven strategies designed to assist clinicians in their treatment formulations, to help families better understand and strategize,  and to promote overall improvement in the lives of children, adults and families affected by TS.

Tourette's Syndrome: Anger Control and Management - Dr. Walkup talks about children with Tourette's syndrome and anger control issues. He discusses thoughts about what might cause anger episodes, and what can be done in the home to address symptoms effectively.

Tourette's Syndrome: Sorting Out Complex Symptoms - Dr. Walkup talks about working in the clinic to sort out complex presentations in children with TS. He discusses co-morbid conditions such as ADHD, OCD, anxiety disorders and other problems which often complicate the cases of youngsters with TS. 
 
     Click here to view the new videos.
  
Education In-Service DVD
     Parents can use this new tool to introduce teachers, school administrators, clinicians and other school personnel to the facts about Tourette Syndrome and the impact that TS has on many students.  The TSA Education In-Service DVD
includes a A 30-minute presentation of the basics plus three additional short presentations that can be used to give more in-depth knowledge on some of the associated disorders with TS; Obsessive Compulsive Disorder, ADD/Executive Dysfunction and Associated Learning Disorders.  With the step-by-step instructions, individuals who have never presented will feel empowered and prepared.
     Copies of the DVD are available free of charge to any national TSA member who requests one.  To order your copy, please e-mail TSA or call 718-224-2999 extension 231. Please allow up to 4-6 weeks for processing.  
All materials on the DVD can also be viewed online at http://www.tsa-usa.org/EducationInservice/Online.html.

Teleconference:  Easing School Transitions
     On August 18th, TSA conducted a teleconference on easing back-to-school transitions for students with Tourette Syndrome. The audio was recorded and posted on the TSA website and is now available for listening.  This 53 minute audio presentation supplies significant information to families and caregivers with transition needs as they pertain to students attending a new school, new grade or a teacher new to them.  Find our more information or listen to the teleconference at http://www.tsa-usa.org/educ_advoc/BacktoSchool81809Conf.html.
 
Legislative Positions Statements
     TSA recently issued new position papers on Restraints, Seclusion and Corporal Punishment in Schools and Healthcare Reform.  View them online at http://www.tsa-usa.org/policy/position_stmts.html
TSA of Texas Can Assist with School Needs
     Please remember that TSA of Texas is here to also help you and your children with school needs.  We can:             
  • Review papers for upcoming ARDs and make suggestions for accommodations          
  • Teleconference in for certain ARDs
  • Present TS In-Service programs to school districts and large gatherings
  • Send information on TS and its educational implications to you or teachers
  • Much, much more!
      Contact Sheryl at 281-238-8096/1-866-896-8484 or Cindy at TouretteTexas@aol.com to discuss your specific needs.  
 

A New Twist on Palilalia

     by Linda
     I was talking to my son's college reading teacher today and just asked her if she noticed Ricky's palilalia. I had to explain it to her first and mentioned it comes in three's.
     She said yes she had noticed it...and that it has been an advantage to him!!!  I asked how.  She said that she had Ricky explain a difficult mathematical question (from a reading text). He was the only one with the correct answer.The first time he explained it, not many students were understanding how he got the answer. The second time he explained it, using different words but having the same message, more were understanding. By the third time, still rephrased again, almost all understood how he got the answer.   By the time he was through, there were oooh's and ahhh's and 'wow, is he smart' coming from the other college students. So I guess this part of TS is to his advantage in reading.
Wonderful Weather and Great Golf...Should've Been There!

     The 15th Anniversary of the Tee-Off for Tourette Golf Event was held on Monday, October 19, 2009 at The Woodlands Oaks Course and the Royal Mile Grill. Volunteers arrived at 8:00 in the morning to begin setting up for the day. Registration for the golfers began at 10:00 and then they were off to the Putting Contest and a tasty lunch generously donated by Texas Roadhouse. Our very first golfer to register was Carl Wilson, who traveled the farthest to attend the tournament, coming all the way from England to The Woodlands!
     With a shotgun start at noon, over eighty golfers hit the lush Oaks Course, which was in pristine condition thanks to Ryan Rosencrantz and his crew (greens superintendent for Canongate Golf).  As each team finished their round, they enjoyed appetizers and drinks at the Royal Mile Grill where every golfer was awarded a door prize.  A delicious Tex-Mex dinner was served as friendships grew and laughter lingered.
     Daryl Brister was the master of ceremonies for the evening.  Daryl introduced Sheryl Kadmon, who spoke about how the golf tournament began with Donnie and Dianne Migl's guidance for the first eight years and then Daryl and Barbara Brister continuing that legacy for the last seven years. Andrei Jackson, a Katy TS Support Group youth member, was this year's special guest speaker. Andrei shared about his life with TS and thanked the golfers for supporting the TSA of Texas.   Afterwards, first, second, and third place teams were awarded a set of beautifully etched 15th Anniversary Tee-Off for Tourette glasses. First place winners were Ian Robinson, Arnvid Froystein, and Lance Ross. Second place winners were Gerald Johnson, Charles Washington, Don Wyche, and Fred Johnson. Third place winners were Jim Atchley, Brian Willis, and Clint Miller.
     For those who wished to come out and enjoy the evening, but not the entire day of golf, Dinner and Auction tickets were sold for the first time this year. The evening event also included a Raffle and Silent Auction, filled with items which were graciously donated and raised over $5500.00.
     Even though sponsorship and attendance was lower this year, it still proved to be a fantastic day all around. A total of $25,500.00 was raised, which is down from last year's event; however, the TSA of Texas is deeply thankful to all those who contributed in so many ways. The date will be set soon for 2010, and the Tee-Off will only keep getting better each year! If you have not participated in Tee-Off for Tourette before,  don't let it catch you saying, "should've been there..."                      

Thank You to Our Supporters!   
     Our deepest thanks to all of the individuals and organizations that allow us to continue our mission of education, support, advocacy and direct client services.  Your generosity truly make a difference in the lives of children and families struggling with the challenges of Tourette's syndrome. 
 
Catholic Daughters of the Americas/Court Mother of Unity #2292
Mary and Jim Harris 
Gordon Hartman Family Foundation 
Hash House Harriers/Eddy Day
Johnson & Johnson Matching Gifts Program
Lakeside Country Club Charitable Bingo
Christine E. Pearce 
Debby and Doug Posso 
Safeway/Randalls
Yvonne and Richard Zimmer 
 
Tee-Off Hole Sponsors                                                                                             
The Yokley Family                                                                                        
Carlos Guerra, Jr., M.D., P.A.                                                                        
The Kurisko Family                                                                                       
W.D. and Judith Cool in Honor of                                                                 
   Grandson Jacob Dunshie                                                                              
The Davis Blumenfeld Family
Carroll-Migl Custom Homes
Michael Howard and Family
Eugene Gutweiler
Adam Howard
Dr. Ben Warner
Corporate Meetings Unlimited - Planning
Beyond the Conference Table
Crain, Caton & James, P.C.
Bryan Calvin Smith Insurance Agent
The Smalling Family
Kathleen Davis-Oates Insurance Agent
San Marcos Police Officer's Association
Alan Schneider Trucking
Chris Hartney and Stacie Walden
Bill Waldroop & Associates Marine Operations
Stability-Safety-Training
Mary Ellen and G.R. Kruger
Durotech, LP General Contractor
Thelma DeChiro-Matt's Granny
 
Tee-Off Cash Donations
Mr. and Mrs. L.K. Siller
Doug and Vivian MacDonnell
Ramona Valenti
BP Fabric of America
Michael Weber
Bill Waldroop & Associates
Greg L. Hall
Bryan Calvin Smith Insurance Agent
Brian E. Bro & Ramona Valenti
Myong Yi
Times Barber Shop
Clifford J. Burton
Mary Nelle Gehle
Laurie Burton Farris
Greg and Janet McDonald
Doug and Debby Posso
Jeff Seipel
Ian Robinson and Evalyn Shea
Steve Carmichael
Derek E. Schrader
Mr, and Mrs. Cornelius Dupre'
Ed Price
Network Funding, L. P.

Tee-Off Silent Auction Donations
Ron and Karen Plante
Houston Aeros Hockey Club
Christopher Paolini
Daryl and Barbara Brister
Kathy Willis
Walden on Lake Conroe Golf Course
Memorial Grill
Academy
Mona McKinnerney, Silpada Designs
Auntie Pasto's
Suzanne Joffrion, Southern Living at Home
Friends of TSA of Texas
Phillip and Maggie Hills
Gabriel Tran Photography
Ian and Joyce Clark
Don and Donna Romero
Don and Alana Van Slyke
Jim and Michele Atchley
Ian Robinson and Evalyn Shea
Shelley Matcha
Ooh La La Dessert Boutique
Perry's Steakhouse
Doug and Stephanie Meuth
Doug and Debby Posso
The Swinging Door
Willowfork Country Club
Mike Mansfield
Round Top Collection
Canongate Golf at the Woodlands
Cindy Sacks
Beau Kisses
The Wine Next Door
Best Buy - Price Plaza

Tee-Off Door Prize Donors
Kathy Willis
Ian and Joyce Clark
Daryl and Barbara Brister
Friends of TSA of Texas
 
Tee-Off Goodie Bag Donors
Shea Writing & Training Solutions
Shelley Sekula-Gibbs, M.D.
Friends of TSA of Texas
National TSA
Mark Bolding & Family
Jim and Michele Atchley
Kathy Willis
Walden on Lake Conroe
Golf, Etc.
Babin's Seafood Restaurant
Sam's Club

Tee-Off Volunteers
Amanda Atchley
Michele Atchley
Barbara Brister
Daryl Brister
Ivy-Jody Castillo
Renee Hawkins
Andrei Jackson
Janet Jacobs
Sheryl Kadmon
Marcia Kurisko
Robert Kurisko
Janet McDonald
Scott McMartin
Julie Meaux
Dianne Migl
Debby Posso
Clair Robinson
Cindy Sacks
Evalyn Shea
Randy Waldman
Kathy Willis

Tee-Off Birdie Sponsor
Sam's Club

Tee-Off Putting Contest
Daryl & Barbara Brister
In Honor of Brenton & Ethan Brister

Tee-Off Raffle Sponsors
Bernadette Heintz
Shelley & Andy Weathers
Friends of TSA of Texas

Tee-Off Beverage Cart Sponsors
Shea Writing & Training Solutions, Inc.
Marnoble Computer Sales & Service, Inc.

Tee-Off Beverage Station Sponsor
Dr. Joseph & Mrs. Kathy Jankovic

Tee-Off Lunch Sponsor.
Texas Roadhouse

A Very Special Thanks to
The Woodlands Resort and Conference Center
The Woodlands Resort - The Oaks Course
The Woodlands Resort - The Royal Mile Grill
Canongate at The Woodlands
"Bonne Nouvelle"
Ethan Brister of Katy graduated from Cinco Ranch High School in June.  He is currently working at Best Buy and was recently recognized for his hard work and inspiration to others.  Hunter Counts made the All Region Choir.  He placed first in the bass category.  Jacob Dunshie of Houston (age 13) achieved his Red Belt in Soo Bahk Do Moo Duk Kwan Karate (a Korean Martial Art) this past September.  He has been taking karate since 2006 and has worked hard to advance.  Demonstration of forms, movements, focus, effort, good grades, written tests, and hours of practice are all part of the process to advance from one belt level to the next.  Timothy Gray of Amarillo (age 8) is having a difficult time with TS symptoms, but still straight As on his report card.  He also answered questions for his third grade class after his teacher read a book to them about TS.  Anthony Flores started high school at O'Connor in Helotes.  He is on the varsity marching band and made the A/B Honor Roll this 6 weeks.  William Hausman of Katy (age 11) just earned his black belt in Tae Kwon Do.
Ricky Hodgson of San Antonio has a 94 mid semester average at Northwest  Vista.  Ricky also passed the college Accuplacer test and will go directly into college-level English in the fall.  Jack Kaplan, an 8th grader at St. John's School in Houston, spoke to his Middle School Chapel on the topic "My Life with Tourette's."  About 350 students and 50 parents gave Jack a standing ovation after his presentation.  Jack has now been invited to speak on Tourette's at the Upper School Chapel later this semester. 
Tyler Morris
of Sugarland (age 13) received all As and Bs on his report card and recently shot a doe at 80 yards on a  hunting trip with his dad.  Chad Stanfield of Burleson (age 14) has never let TS slow him down.  He has excelled academically and takes pre AP classes at his high school. He was elected as a Student of the Month in 7th grade and chosen for the Neat Kid Award by the Optimist Club two different years. He joined the school band in 6th grade and upon leaving middle school was chosen as Outstanding Musician. He was one of only 2 freshman to make the drumline and march with the Varsity Band in high school.  Chad plays tennis on the school team and led his team from the #1 position for most of 7th and 8th grade. He is also a Red Belt in Tae Kwan Do.  Jacob Walthall of Austin (age 11) is on the honor roll, achieving straight A's in 6th grade.  His brother Adam Walthall (age 13), recently played a violin solo at his school's Honors Orchestra Fall Concert.  Michael Walthall, age 8, is the class "Technology Expert".  Whenever there's a problem with any of the computers, projectors, etc., Michael is called upon to fix it.  He even helped the Campus Technology Coordinator figure something Brenton Brister & Teamout!  Austin Ward of The Woodlands (age 9) and his team, The Little Vampires, won first place in the Iron Man Hockey Tournament at Three Star Inline Hockey in Shenandoah. The tournament was held Oct. 24.  Austin played goalie for the team.  Brayden Yancy, age 10,  is a straight "A" student.  He is playing CYO flag football right now, but is also great at baseball and basketball. 
Congratulations to all of these hard working superstars!  
    
     Please send us your "Bonne Nouvelle!"  Has your child received straight A's?  Recently graduated from college?  Are you, as a person with TS, successfully juggling home and family?  We would love to hear about your "good news" for future issues.  Please send your information to TouretteTexas@aol.com.
Physician Referral List
TSA of Texas maintains a list of Texas physicians who are experienced with TS.  To receive a PRL for your area, please email TouretteTexas@aol.com with your city location.  We are also seeking to expand our list, particularly in smaller cities, so if you have a physician who does a great job dealing with TS, please email us his or her contact information.  PHYSICIANS:  if you are interested in learning more about TS or being considered for our PRL, please contact Sheryl Kadmon, Executive Director, at 281-238-8096 or 866-896-8484.
How Can TSA of Texas Help You?
TSA of Texas is here to assist families dealing with TS throughout the state.  We offer:
  • EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.   
  • INFORMATION DISSEMINATION via packets, brochures and telephone conversations.  
  • LIBRARY of DVDs, videotapes and books. 
  • REFERRAL to physicians, therapists, community services, and state and county agencies.  
  • ADVOCACY through assistance with ARDs, IEP, 504 or OHI classification.  
  • SUPPORT GROUPS throughout the state.  
  • CHILDREN'S WEEKEND camping program "du Ballon Rouge."
  • FAMILY ACTIVITIES such as baseball games, museum visits, swim parties, and more. 
  • SPECIAL FUNDING sources such as the Kenneth H. Davis Family Assistance Fund and Fund A Need. 
  • ...and much, much MORE! 

Call TSA of Texas at 281-238-8096 (toll-free 1-866-894-8686) or email TouretteTexas@aol.com for more information.  If you have needs other than those listed above, please let us know and we will do our best to help. 

How Can You Help TSA of Texas? 

TSA of Texas funds its services through private donations, fundraising events and grant support.  We receive no state or federal funding.  You can help TSA of Texas and support Texas families dealing with TS by:

  • ATTENDING our fundraising events (e.g., our major Gala held each January and our Tee-Off for Tourette in October)
  • DONATING items or gift certificates for Silent Auction at Gala or Tee-Off 
  • ORDERING a tribute card sent in honor of someone's special event,  
  • CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice,
  • LINKING your Randall's Remarkable Card to charity #2493, or 
  • REQUESTING a Kroger Neighbor to Neighbor bar code to link to your Kroger Share card..

All donations are totally tax deductible.  Learn More>>  

Bonne Nouvelle is published quarterly by TSA of Texas.  It is edited by Shelley Matcha and Cindy Sacks.