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Spring 2014
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Volume 8, Issue 2
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BONNE NOUVELLE
Your "Good News" from TSA of Texas |
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TSA of TX: Helping Children and Changing Lives
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Tourette's syndrome (TS) is a chronic neurobehavioral movement disorder that begins in childhood. Those affected make motor movements and vocalizations they cannot control. Additionally, many have associated obsessive compulsive disorder, attention deficit hyperactivity disorder, dysgraphia and other issues. Today's estimates indicate up to 3 percent (1 in 33) of all children may have Tourette's syndrome. In spite of its high incidence, TS continues to be greatly misunderstood. 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.
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From the President - Michael Conway
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 | | Michael Conway |
"YOU...ARE...AN IRONMAN!" are the four words every triathlete longs to hear after a grueling day of both physical and mental suffering! In the finish chute of an IRONMAN event, with music thumping, crowd cheering, your heart beat racing, and 'high-fiving' spectators on both sides of the crowd barriers as you near the finish, you hear those words, which you've worked so hard to earn. Those four words signify the accomplishment and dedication of months, sometimes years, of training. The IRONMAN is a triathlon that consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run to be completed consecutively within 17 hours.
To give you a brief history, I entered my first triathlon three and a half years ago (a "sprint" triathlon, which takes about an hour and a half to complete). From there, my appetite for triathlon grew and I finished my first IRONMAN last May in The Woodlands. Triathlon is an endurance sport. The hours of training, especially for long distance races, can seem endless. The training...I could do without! It's the journey of race day that drives my passion!
But, it's not a race to me - it's not about going fast, it's not about getting a medal, it's not even about hearing the phrase "YOU... ARE...AN IRONMAN!", although that is nice to hear as it signifies you are done with this crazy 14-15 hour madness! Although IRONMAN Texas was my first race at that distance, I realized at the end of the day that it felt very similar to many other days I had already lived. It was a different kind of pain and suffering, but it was a familiar exhaustion that I have been living with all of my adult life.
If you suffer from Tourette Syndrome (TS), or if you have a child or care for a loved one suffering from TS, or are in the medical field and treat patients with TS, you too understand this exhaustion. The challenges of getting through each day, from the minute you wake until the minute you fall asleep, often mirror the challenges of an IRONMAN triathlon. You endure, without a choice, sometimes minute to minute. The frustration of trying to control your tics, and the soreness or discomfort they cause, is your physical suffering. The embarrassment, unwanted attention, and occasional humiliation are your mental suffering. Throw in OCD or ADD and it seems like you are riding a bike 112 miles...backwards!
However, there is a monumental difference between a triathlete completing an IRONMAN and those of us affected by TS! Triathletes are praised and congratulated for their ability to endure and suffer great discomfort - and well they should. We, on the other hand, are often talked about and the recipient of curious glares and finger pointing by others. There is no music, or cheering, or high-fives when our day is done. There are no pats on the back and praises of "good job" when we crawl into bed.
As I mentioned before - an IRONMAN triathlon is not a race to me. It is my opportunity to prove to myself that I am in charge of my body and my mind and of what I can do - not my TS. While I do tic and make noises throughout most of the event, with countless glances from other athletes, it is when I cross that finish line that I truly overcome. I WIN - NOT Tourette Syndrome!
I recently started a program, within TSA of Texas, called Tri for Tourette. While I want to bring awareness to every individual that I 'toe the line' with at a triathlon, my primary purpose is to raise funds for our one-of-a-kind camp, Camp du Ballon Rouge (please see our website for more information about our camp). We have seen so many positive changes from campers who have attended our camp - we have to get more children there who suffer from TS! To do that, we need your financial support.
We have created a fundraising page by partnering with the IRONMAN Foundation under their "Your Journey Your Cause" program. I am providing our link here to our IRONMAN Texas fundraiser. Please consider making a donation to support our camp so we can give more of our kids an opportunity to attend camp. No donation is too small and, other than a very small fee paid to the IRONMAN Foundation; all donations go to support our camp.
CLICK HERE for the Tri for Tourette link.
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Tri for Tourette Singlet
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Please let us know if you would like to be part of a group that will come out to The Woodlands, on May 17, to support us on race day. Seeing you out there will only motivate me to spread our cause and it will mean more to me than finishing the race itself.
My dream would be to stand at the bedside, at the end of the day, of every child who suffers from TS and say (through a megaphone) ...
'YOU...ARE...AN IRONMAN!'
Michael
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Texas Hotlines | |
Houston: 281-238-8096
Toll Free: 866-894-8686
Emergency Pager: 281-932-0632
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Support Groups
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All support groups are FREE of charge and have supervised fun for kids with TS and their siblings while adults meet separately. TSA of Texas has support groups in:
To start a support group in your area, please contact us toll free at 866-894-8686.
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Third Annual Targets for Tourette's Fundraiser
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Friday, April 25, 2014
TARGETS FOR TOURETTE'S
Sporting Clays Shoot, Drinks, Dinner, Live Music, Dancing
Greater Houston Gun Club, 6700 McHard Road, Houston
Chairmen: Jyl and Keith Calcote
Dinner catered by REEF.
Reef was named the #1 Seafood Restaurant in the U.S. by Bon Apppetit Magazine.
Learn more at: http://www.reefhouston.com/
Music by The Tommy Alverson Band.
Read more about Tommy and his Band HERE.
Don't Miss out on this boot-kickin' and boot-scootin' event!
Sign up NOW for Teams of Four, Individual Shooters, or Dinner & Dancing only.
CLICK HERE for Invitation.
CLICK HERE for Reply Card.
There's also excellent shopping that evening! Live Auction items include rare Wine Cellars, an African Safari, a Private Shoot and Longhorn Steers. Or visit our Sponsors such as Maida's Belts & Buckles, Joseph's Vintage Guns, Dos Carolinas Shirts, Armando's Custom Boots and more! Or purchase Raffle tickets for a special 'His & Hers" package -- custom boots and a rabbit jacket!
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Jessica Wilcox - 2014 TSA of Texas Youth Ambassador
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 | | Jessica Wilcox |
The TSA of Texas 2014 Youth Ambassador is Jessica Wilcox, a fifteen year old freshman from Whitehouse, Texas. Jessica has a passion for the arts and is active in singing, acting and playing the piano. She also enjoys studying foreign languages and is currently looking forward to studying abroad in South Korea. An active community volunteer for the Tyler Area Senior Citizen Association, Jessica absolutely loves the work and the people she has met.
Jessica was diagnosed with Tourette Syndrome when she was five years old.
"I really do feel that having Tourette Syndrome has helped to make me into the person that I am today. It makes me unique in many different ways, has taught me patience, and has made me more tolerant of other people with differences.
Many people these days do not understand Tourette Syndrome because they are not properly educated about it. I am hoping that through my service as a Youth Ambassador, I can help people to have a better understanding of TS, and am looking forward to doing so."
After being selected to be our Texas Youth Ambassador, Jessica went through National TSA YA training in March with her mom Sheila. There, they had the opportunity to meet with politicians in Washington, D.C. and to lobby legislators to provide funding for TS training and education, as well as ask them to support the CARE ACT, which is being introduced to support National Institutes of Health funding for more TS research.
Jessica has now returned to Texas to educate her peers and younger children with accurate information by going into classrooms, schools and clubs to teach understanding, sensitivity and tolerance of TS and its symptoms, while dispelling the myths and stereotypes that are often attributed to and associated with this misunderstood and misdiagnosed disorder.
"Attending the TSA Youth Ambassador Training was a wonderful and empowering experience. Not only did I learn how to present information about Tourette Syndrome (TS) to a wide variety of people; I also learned things about TS that I was not previously aware of. The "Trip to the Hill" was an exciting event that gave me the confidence to move forward with my duties as a Youth Ambassador. Being in such an accepting environment with other teens who know what it's like to have TS was very uplifting and I'm overjoyed to have had the chance to meet a group of such amazing people. I am hoping that by becoming a Youth Ambassador I can educate and spread awareness for TS, helping others to better understand the symptoms and what it's really like to live with this disorder."
Rotary Clubs, Scout groups, Peer Groups and others in the general Whitehouse, TX area
can schedule a free 30-40 minute presentation on TS by Jessica.
Contact: Sheila Wilcox, Chaperone & Parent
Phone: 903-952-5439 E-mail: tsajessica@hotmail.com
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Share & Be Chic -- Shop at Neiman Marcus Last Call - Post Oak
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Can You EVER Enjoy Too Much Shopping?
Not if it Benefits Tourette Syndrome Association of Texas!
Share & Be Chic!
Tourette Syndrome Association of Texas and Neiman Marcus Last Call
invite you to a FUN shopping event!
Sweets, Sips and a Special $20-Off Incentive
with your $10 shopping pass
Tuesday, April 29th
Neiman Marcus Last Call Studio Post Oak
2315 Post Oak Boulevard
Shop anytime between 12 noon and 7pm
HERE'S HOW IT WORKS:
* Make a tax deductible $10 donation to Tourette Syndrome
Association of Texas
* Receive your Exclusive Event Ticket for April 29th
* With your ticket, enjoy sips, sweets and a $20 off coupon -
ONLY for ticket holders! - on 4/29.
If you have already shopped at NM Last Call Studio, you know the fabulous savings on quality merchandise - women's and men's clothing, shoes, handbags and jewelry! If you have not yet tried Last Call, here is your chance - with extra savings just for you!
ORDER YOUR EVENT TICKET TODAY!
Send check, payable to Tourette Syndrome Association of Texas, to Cindy Sacks, 9407 Brown Leaf Circle, Houston, TX 77096. Be sure to include your mailing address, so your ticket
can be mailed to you! $10 per ticket.
To pay by PayPal or Credit Card, contact Cindy at TouretteTexas@aol.com.
Share this information with friends! Enjoy a Group Shopping Experience with your friends!
Neiman Marcus' newest concept store, Last Call Studio by Neiman Marcus, features directly-purchased, in-season merchandise that is less than what you would find in a full-line Neiman Marcus store. With its clout, the luxury retailer convinced such top designers as Diane von Furstenberg, Marc Jacobs, Rachel Roy, Giorgio Armani and Michael Kors
to create clothing and accessories exclusively for the Studio stores at 30 percent discount and passed it on to
bargain-savvy shoppers.
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Camp du Ballon Rouge
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RESCHEDULED dates for the
12th annual Camp du Ballon Rouge Weekend
Friday, September 26 through Sunday, September 28
Due to an unfortunate error at Camp For All, Camp du Ballon Rouge has been re-scheduled to Friday, September 26 through Sunday, September 28, 2014.
CAMPERS: We appreciate your patience and understanding of this unavoidable delay. We cannot wait to see you all at Camp in September --and we will get to go swimming this year!
HUGE THANKS to our awesome Camp Physicians, Psychologists, Nurses, Counselors, Support Staff and others who so generously volunteer their time and love each year to make this such an amazing weekend. We are grateful you can accommodate these new September dates.
PARENTS: We will utilize the forms already sent in for the original March dates. However, an updated physician form/page 7 (i.e., re-dated and initialed by physician) and current medications/symptoms will be needed prior to Camp. We will notify each of you closer to the camp date.
The TSA of Texas shared this Camper's sentiments exactly when informed we needed to move Camp:
Hi -- I've attended Camp du Ballon Rouge for going on 6 years. I'm not griping or anything, I just don't understand why we have to wait until 6 months to go to camp. Du Ballon Rouge has a huge impact on my life. I know it's just a mistake, but it is hard for me to get through.
Signed, C.W.
Response from Sheryl Kadmon, TSA of Texas Executive Director:
So very, very sorry! I am also very disappointed. I did not want to wait, either. But, Camp For All only gave me two new date choices, because du Ballon Rouge is such a big camp that we need ALL the cabins and the whole Health Center. The first choice was actually in two weeks - but most of my couselors couldn't come on that date and we can't have camp without counselors. So -- my only choice was the September date. Thank you for your thoughtful email. Please call or email anytime.
Lots of love, Ms. Sheryl
See you in September!
CAMP APPLICATIONS ARE NOW CLOSED. ALL SPOTS FOR CHILDREN ARE FILLED with Campers who had applied for the original March dates. Should any extra spots open prior to September, we will send out notification in our next newsletter.
You can help sponsor a child at camp!
Camp is always tuition-free to our families with Tourette's. However, even with all our wonderful volunteers giving of their time and knowledge, TSA of Texas still pays about $350 for each child at dBR. Please send $100.00 (or more) for a virtual "Red Balloon"
and make a difference for a child by helping us pay their way to Camp in 2014!
Camp du Ballon Rouge
c/o TSA of Texas
3919 River Forest Drive
Richmond, TX 77406
All donations are tax deductible in accordance with IRS regulations. |
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Spotlight: Katy/Sugar Land/West Houston Support Group
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TSA of Texas welcomes our NEW Katy/Sugar Land/West Houston
Support Group Leader: Tonya Paulson
Tonya is married to Matt and has two children. Now 13, son Jackson was diagnosed with TS when he was 9 years old. Daughter Christian is 16 years and will assist Tonya with the children's group.
Tonya says, "I am excited to be able to give back to TSA after all that they have given my family. Sheryl and Cindy have both been awesome in giving support and sharing their vast knowledge. When I found TSA, I was honestly at my breaking point. Today, due to TSA, Jackson is in the right school, he seeing the doctors and we understand more about his syndrome and how to support him.
My son Jackson has numerous tics but his vocal, or his screaming tic is extremely loud and will not be ignored. He screams "I have Tourette's" among other things. As most parents of children with TS can attest to, children with TS seem to find passions in their life's that are absolutely life changing. My son has a passion for archery. Archery has been life changing, it is amazing that most of the time when he is doing archery his is focused and free form his TS.
Jackson loves camp. He loves going somewhere; anywhere that he does not have to explain that he has Tourette's and what Tourette's is.
As I have stated that my daughter will be assisting me in the leadership of the Katy group. Christian is extremely passionate in regards to Tourette's and the difference she can make in a child's life. She is looking forward to being 18 so she can volunteer and both Camp du Ballon Rouge and Camp Twitch and Shout. She understands from being with a brother, that something as simple as a little patience and understanding can make a big difference in some ones day.
If any one finds them selves in the Katy area on the second Wednesday of the month, please feel free to stop by; we would love to have you come visit and share your story!"
The Katy area group meets the second Wednesday of most months, starting at 7pm at Houston Methodist St. Catherine's Hospital (formerly Christus St. Catherine Hospital), 701 Fry Road, Classroom B. 2nd Floor. We hope to see you at our next meeting on May 14th.
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Tourette Syndrome Awareness - 2nd Annual HOOPS for HOPE
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Join a determined family and a supportive community as they bring awareness
to Tourette's syndrome in honor of Leonard Moreno.
Second Annual "Hoops for Hope" -- Saturday, May 31
Van Vleck High School, Bay City, TX.
Basketball tournament, rides, raffle, a variety of delicious food, more --
all donated by this incredibly generous community.
Tourette's syndrome information presented by Sheryl Kadmon,
TSA of Texas Executive Director.
For more information or to make a donation, contact Crystal at ac_cm@att.net
VIEW the "Hoops for Hope" Facebook page HERE.
To find out how YOU can help with TS Awareness, contact the Office at 281-238-8096 or
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Save the Dates
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Contact your support group leaders for information on upcoming meetings or visit our Facebook page at TouretteTexas for updates and topics.
May 15 - June 15
Tourette Syndrome Awareness Month. Help spread the word about TS!
May 17
IRONMAN Texas -- a triathlon consisting of a 2.4 mile swim, 112 mile bike ride, and a 26.2 mile run. We are proud to have two people in IronMan Texas raising funds for TSA of Texas!
Michael Conway, TSA of Texas President and Camp du Ballon Rouge Founder/Director is competing through Tri For Tourette, raising funds for Camp dBR. Read Michael's story HERE
and help support his efforts!
Richard Plant is competing in honor of his daughter Auldyn, who has TS. Read about Richard's campaign HERE
September 26 -28, 2014
12th Annual Camp du Ballon Rouge -- RESCHEDULED
FREE to Texas families -- thanks to the funds raised at Tee-Off, Gala and Targets for Tourette's, as well as the volunteered time and incredible dedication of our dBR physicians, nurses, counselors and staff.
Monday, October 28
SAVE THE DATE -- Tee-Off for Tourette's--20th annual Charity Golf Event. Canongate at The Woodlands -- Panther Trail Course. Teams, single golfers, sponsorships, dinner/auction only tickets all available. WE ARE LOOKING FOR FOLKS ABLE TO ASSIST US WITH TEAM SALES. Contact Cindy at TouretteTexas@aol.com for more information.
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Support TSA of Texas While You Shop!
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Head to the Grocery Store!
 At Randalls or Tom Thumb, ask the cashier or Courtesy Booth to link your Rewards Card and future purchases to Tourette Syndrome of Association of Texas at #2493. That's it! Our number stays linked to your card unless you cancel it. For Kroger, grab your Kroger Plus card and go to www.krogercommunityrewards.com. Sign in and go to My Account and then to Account Settings. Once there, look to the right and edit "Community Rewards" by putting in #82092 (Tourette Syndrome Association of Texas). This is a NEW system for Kroger, so you MUST re-link this year -- they no longer scan bar codes. This new system is so much easier than you think. However, if you need further assistance, either ask the Kroger Courtesy Booth to help, or email Cindy at TouretteTexas@aol.com for further instructions. Shop at AmazonSmile AmazonSmile is a simple and automatic way for you to support your favorite charitable organization  every time you shop, at no cost to you. When you shop at smile.amazon.com, you'll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. Connect with AmazonSmile HERE. (or search Tourette Syndrome Association of Texas, EIN 74- 2198940) These are all incredibly easy ways to support TSA of Texas! Ask you family and friends to link their grocery cards or shop AmazonSmile also. There is NO COST to you to do this and TSA truly appreciates every penny we receive!
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TSA of Texas -- Out and About
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Sheryl Kadmon, TSA of Texas Executive Director, and Edward Knapek, TSA of Texas Adult Ambassador, were invited to speak to the U.S. Attorney's Office, Eastern District of Texas, at their annual Disability Employment Awareness. The event was coordinated by US DOJ Tyler Legal Assistant Jill Wood, who shared the challenges and achievement earned by her 12 year old son Sam, who has Tourette's. Sheryl and Edward explained TS's manifestation, treatment and accommodations at school or in the workplace.
 | | Lisa Henry |
North Houston/Woodlands Support Group leader Lisa Henry, Lisa's son Ian, Fort Worth Support Group Leader Sherri Ruyle and her son Anthony all represented Texas at the National TSA Conference in March. Lisa and Sherrie attended presentations on Executive Function; Positive Approaches for Challenging Behaviors; Lagging Skills and more.
Ian attended the children's camp and heard from a Rocket Scientist and a pilot in the US Air Force. He even meet Antonio from Barter Kings on A&E, who has TS. Meanwhile, poor Anthony was felled in his room by strep throat!
Lisa also accepted our Chapter's award for 2014 TSA Outstanding Affiliate for Creative and Effective Fund Development during the period 2013-2014.
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"Good News" from Our Families
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Banks & Nikos
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Nikos Lopez and Banks Brashier met at Camp du Ballon Rouge in 2013 and have become fast friends. Nikos lives in Austin and Banks lives in Friendswood, Texas. Nikos and Banks were able to spend some time together over Spring Break and had a blast together at Schlitterbahn in Galveston.
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The Lopez & Brashier families
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Banks' mother Holly says, "The bond that these 2 boys have is incredible; they truly have someone who 'gets' them! They are 2 'peas in a pod!' The relationship we have formed with the Lopez' has been amazing as well. We are able to talk completely openly and honestly about how we handle day to day situations. It is truly a blessing and we owe it all to TSA and Camp du Ballon Rouge...THANK YOU!!!"
 | | Stewart Clutter |
Stewart Clutter of Houston recently started Tae Kwon Do and was just promoted to Orange Belt Decided ( a half rank above orange belt!).
Here is Stewart on testing night with one of the guest judges at Integrity ATA martial arts.
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Michael Conway & Brad Cohen
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Michael Conway, TSA of Texas President, attended the Brad Cohen Tourette Foundation Conference in Atlanta in February. Keynote Speakers included: Dr. James Leckman (Yale University), Dr. Doug Woods (Texas A & M University), Sheryl Pruitt (Parkaire Consultants), Dr. Leslie Packer and Brad Cohen. Brad is a motivational speaker, teacher, school administrator, and author of "Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had" (also a Hallmark movie). Brad and Michael are long-time friends. Brad was even one of the Counselors at our very first Camp du Ballon Rouge! More about Michael HERE.
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Kylie at her "eyeball" party
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Kylie Ellis, age 10, of Pasadena, (who also has TS) just completed 4 1/2 months of vision therapy to correct issues she was having. The therapy required much concentration from Kylie and had to be done 5 times per week.
Her parents were so proud of Kylie's hard work, they held an "eyeball party" to celebrate the therapy's completion!
 | | Antonio with Ian Henry. |
Ian Henry of Tomball attended the National TSA Conference with his mother Lisa. During his experiences there, Ian gained some confidence and hopes to do Youth Ambassador Training next year.
Ian was excited to meet Antonio of Barter Kings on A&E, who has TS himself. Earlier in the year, Ian also earned his black belt in Tae Kwon Do. He worked four years and his parents are extremely proud of him. Also, in a National Math test, Ian placed third among sixth graders in the Top 20 schools in America.
 | | Cullen on his 21st Birthday - in Namibia, Africa |
Cullen Johnson is graduating ASU with a Criminal Justice major in May. He graduated in four years while working full time for his parents' firearms companies as Head of Training. He will continue with Karen and Mark's companies upon graduation and is also very involved in our international sales and training activities. This far, he has traveled to Kuwait, Jordan and Israel on company business. He leaves for Peru on Monday. He anticipates traveling to Nigeria, Brazil and Pakistan in the very near future. Cullen will be 22 on April 20th -- Easter Sunday. Cullen has been able to channel his challenges in a very positive way including becoming a member of Mensa (society of individuals with exceptional high IQ's), a master scuba diver, a member of a New Mexico police department, a member of the US Marshall's task force, an off road Jeeper, and recently made a 9,000 mile drive from Phoenix to the arctic ocean and back. It is all due to his determination to not experience any limitations!
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Lauren King
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Lauren King, age 10 of Cypress, continues to show her horse Corianna. Lauren's leg tics were very bad the week before a recent Pin Oak event, but Corianna was very patient. Once Lauren & Coriana started trotting and cantering, the forward movement settled the tics down. Lauren and her horse pay attention and work with whatever the day may bring. They were Champion out of nine horses recently.
Mom Lori says, "Lauren's trainer, Nada has picked up quickly on the subtle signs of tics that may pose a problem, especially when jumping her horse. She has put a lot of effort into understanding Lauren's TS. Lauren is a very blessed little girl with an amazing team..... including Sheryl Kadmon, Dr Tarnow and Dr Butler."
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Kirk Lipsitz
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Kirk Lipsitz, a TSA Youth Ambassador from Dallas, has been accepted to Austin College with a four year scholarship. He has also been signed to play football for the AC team - the Kangaroos!
Kirk will graduate from the Winston School in Dallas, Texas in May. Kirk was voted Homecoming King, Student Council Officer and Athlete of the Year at Winston. He also served as Captain of the Football Team and Captain of the Baseball Team. Kirk proudly shared his year long Senior Project and Presentation about Tourette Syndrome with the faculty of the Winston School. Kirk has one very proud mother!
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Rachel as "Grandma"
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Rachel Marsh, age 14 of Plano, was one of the leads in her December school play, in the part of "Grandma". She was also cast as a Noblewoman in another play this spring. Her easy ability to memorize lines astonishes her mom.
This summer, Rachel will attend the Summer Math Institute at the University of North Texas. She will complete a full year of Pre-Calculus while there, and will be the only 14 year old taking trigonometry and calculus at her school next fall.
Rachel has diagnoses of Tourette's, OCD, ADHD, and Aspergers. Her biggest battles in life are tics, OCD, and social delays.
Kurtis Matzkind, a 33 year old with TS, is graduating in May with a Master's in Education from Sam Houston State University and continue teaching Social Studies at J Frank Dobie H.S. in Pasadena ISD. This is Kurtis's second Master's degree!
Michael Mezmar, another adult with TS, is currently serving a second term as Harlingen City commissioner. Michael was not diagnosed until age 47 and is a retired FNP with degrees from Pitt and Vanderbilt.
 | | Auldyn Plant |
Richard Plant reports, "I am participating in my second full IronMan on May 17th in the Woodlands, Texas. For those of you not familiar with IronMan races, participants must swim 2.4 miles, bike for 112 miles, then run a marathon (26.2 miles) in 17 hours or less.
After I signed up for IronMan Texas, my youngest daugher Auldyn, who is 9, asked me to use the race to raise money for children who "tic" like her. Auldyn was diagnosed with Tourette's Syndrome when she was 6, and since then has been very brave about her situation, while definitely experiencing some emotional highs and lows. Through the most amazing generosity of co-workers at Shell Oil Company, friends, family, and the people I train with, as of today we have raised $4,500 (goal is $5,000). My family and I have been genuinely humbled by the outpouring of support and we are so grateful.
The reason why I started doing triathlons in the first place was watching Auldyn and her sister Callan (who is 11) compete in a race in Houston. I was soon "bitten by the triathlon bug" and have competed in Sprint, Olympic, half IronMan, and now full IronMan races. Raising money for the Tourette Association of Texas is a very small way that I can support those with Tourette Syndrome, and to give back to a sport that has meant so much to me and my family." More HERE.
 | | Katy Yost |
The Yost family of Katy, TX had a wonderful spring break vacation in Santa Fe, NM this year. Mom Carol writes, "We took a glass blowing class and made a bowl, lamp and paperweight. It was a great experience. The owner was extremely patient and careful. We also drove the Turquoise Trail (about an hour drive from Albuquerque to Santa Fe). Katy packed her own travel bag before we left Texas and thus came prepared with a chisel, plastic bags, a magnifying glass and brushes to "excavate" rocks, which she loves! We believe she has the heart of a true geologist! It was so much fun and the best part of the trip according to Katy! We also went up to Santa Fe Ski Resort and played in the snow, visited Bandelier National Park where we hiked and saw ancient Native America Indian ruins known as cliff dwellings and visited the famous Loretta Chapel in Santa Fe with the mysterious spiral staircase.
It was the best spontaneous family vacation we'd ever had!"
  
Would you like to share YOUR "good news" in our next e-newsletter?
Email information and photos to TouretteTexas@aol.com. Deadline for our next issue is 3/30/14.
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From the Experts: Carol Ann Brady, Ph.D.
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Carol A. Brady, Ph.D. and husband Patrick Brady, Ph.D.
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EXPECT THE UNEXPECTED
As a clinical psychologist it is often my privilege to work with youngsters who have been diagnosed with Tourette's syndrome. Because of diverse, and an often unpredictable range of symptoms and their involuntary origin, my approach must necessarily be different. I must often train myself never to go by the book and, most importantly, to expect the unexpected. Tourette's syndrome is a complex neurobehavioral movement disorder characterized by involuntary movements and sounds called tics. The onset of symptoms must occur between the ages of two and 21, they must wax and wane, and they must be present throughout a period of more than one year. Additionally, most children will exhibit co-existing behavioral problems including obsessive/compulsive disorder, attention deficit disorder with or without hyperactivity, and aggressive and oppositional behaviors. They may also be learning disabled. Although the clinician may expect vocal tics and motor movements to some degree, what often is more subtle and interwoven are the psychological and behavioral problems that co-exist with Tourette's syndrome. These vary by individuals, but again will often include attentional problems, lack of impulse control, irritability, oppositionalism, obsessiveness, and compulsiveness. Also included may be more classic signs of anxiety and depression or over-involvement with sexual content, with all the above leading to not winning friends and influencing people, particularly during the teenage years.
On a day-to-day basis, a Tourette's child is often besieged by a myriad of demands saying to him, "control yourself'. So many have despondently retorted, "I cannot". Oftentimes school and parents misunderstand that the associated symptoms are part and parcel of the syndrome. The significance of this is to expect that the child may be able to control or behave as youngsters can in all other areas with the exception of the motor and vocal tics. As I have come to understand from the youngsters who have trained me so well in their disorder, it is all intrinsically interwoven and part of the same syndrome. Interestingly enough, unlike the child who clearly suffers from an emotional problem, the Tourette's youngster may be horrified or otherwise upset that there is absolutely no control. While he or she may have a well-developed conscience, there may be occasions of seeming oblivious to any type of punishment. In essence, these children simply do not react in the usual way to traditional techniques.
For most children with bad behavior, behavior modification will be applied in which a contingency of time-out is given at the onset of inappropriate behavior and then the behavior will remediate. With Tourette youngsters, however, I find that, unless they can finish the thought, deed, or activity they are engaged in, they cannot interrupt that chain to move on to a new one. In the playroom, I often observed this. Often a story is compulsively reported over again many times before the issue can be dropped. This has the feel of a demanding, and sometimes one assumes, spoiled youngster who cannot deal with not getting his or her own way. It is, I think, not so much not getting their own way that drives these children as it is that they cannot give up on an idea or thought until it reaches some natural conclusion.
Unfortunately, sometimes the conclusion is for the grownups around them to become extremely upset to the point where a new problem moves into the arena, that being the upsetness of the parent over-shadowing and overwhelming the child's immediate particular need. Constant reprimands result in a vicious cycle. When thwarted, often a temper tantrum will ensue much to the annoyance of parents and teachers. So many times I have seen these youngsters on the way out the door say, "We must go to the toy store after the session", "We must have a friend over", or "I insist we take an extra sticker".
These are just some examples of what I feel is part of the big picture. By the same token, to expect the unexpected in youngsters with Tourette's syndrome is also to be happily surprised that they can be so responsive. Just when it appears that there is no chance for them to talk about what really is on their minds, they will open up and spill the beans.
Often medication clearly helps with some of the symptomatic behavior. However, frequently I see a parent go from medication to medication in search of a solution only to find subsequently that a new search is needed because the symptoms have changed. This can be a never-ending process, especially when parents reject the necessary but tiring search for the correct medication to accentuate the positive without significant unmanageable side-effects.
While psychotherapy cannot cure a vocal tic or an involuntary motor movement caused by the neurological aspects of this disorder, psychotherapy has its place. Often youngsters, because of associated learning and social disabilities, have problems with self-esteem. They need to have a forum that will provide a chance for them to talk about how painful, psychologically, it is to have so little control over what others seem to come by so easily. Psychotherapy also provides support for the family to change the rules, to not expect what they expect from other youngsters, to capitalize on the unexpected, and, most of all, to not take some of the loud tirades and diatribes too personally. It is not that these youngsters fail to appreciate or care about their parents, rather that, at times, they are helpless victims of a disorder that leads them to tantrum at the drop of a hat. The family, as with any special needs child, needs to come to terms with the fact that their child is on a rollercoaster-like syndrome in which the symptoms will wax and wane and change over time. Although all symptoms will usually worsen during puberty, many will, after adolescence, significantly recover control over their motor and vocal functions. Most will go on to have at least a marked decrease in symptoms. Despite this fact, many of the young adults I have seen who have been down this road still show some problems in judgment and in a sense-of-self, due to an inability to find prospects for themselves supported by misunderstandings about what they and others think and say about the disorder or a tendency to react strongly to minor insults and disappointments. So the legacy of this syndrome may continue in some form or fashion, although more masked from the glaring eyes of the observer and critics in the outside world.
On the positive side, people working with Tourette patients will often be pleasantly surprised. What also is to be expected is a challenging and rewarding involvement with youngsters who show more courage and bravery than ever thought possible. Significant adults need to accept the fact that the behavioral symptoms, tantruming, and repeated instances are a part of the Tourette's syndrome. Take care, caretakers, for with a Tourette's syndrome youngster, only patience and skillful response can counter the behavior and, of course, it helps to expect the unexpected.
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Carol Ann Brady, Ph.D. has been on the Tourette Syndrome Association of Texas Medical Advisory Board for over twenty years. She was named one of the "10 Best Child Psychologists in the Country" by Town and Country Magazine and is a staff writer for ADDitude Magazine.
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Help Find the Genes for TS
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The Tourette Syndrome Association International Consortium for Genetics (TSAICG) has identified several chromosomes that may contain genes for TS. The TSAICG is collaborating with the National Institute of Neurological Diseases and Stroke (NINDS) and TSA to continue genetic studies and confirm these findings.
But to do so, we need to enroll 3,000 people who have TS.
Taking part in the study involves answering questions about your tics and related symptoms. Or, if you are the parent of a youth with TS who is 6 to 17 years old, answering questions about your child's symptoms. If your answers to these questions qualify you for the second part of the study, you will be asked to donate a sample of blood for genetic analyses.
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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. |
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How Can TSA of Texas Help You?
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TSA of Texas is here to assist families dealing with TS throughout the state. We offer:
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EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.
- INFORMATION DISSEMINATION via packets, brochures, web site downloads, email 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, theater outings 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. Visit our web site at www.TouretteTexas.org. If you have needs other than those listed above, please let us kno w and we will do our best to help.
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How Can You Help TSA of Texas?
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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:
All donations are tax deductible. Learn More>>
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