||Vol 1, Issue 2 |
Your "Good News" from TSA of Texas |
|TSA of TX: Helping Children and Changing Lives |
|Tourette 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 OCD, ADHD, 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. |
|From the Executive Director|
| 'Tis the Season when the Tourette Syndrome Association of Texas becomes a whirlwind of activity preparing for our annual gala fundraiser in January. This event raises most of our yearly budget for the entire state. Although development is the least favorite part of my job description - (I would much rather be with the kids and families) - it has become one of the most necessary and important. Without significant amounts of money, we would have no funding of our programs - no camp, no medical assistance program, no telephone...you get the picture.
As part of our TS family, you could be a tremendous resource for our fundraising efforts. Do you have a matching gift program at your company? Are you employed by a business, shop or restaurant that would donate an item for silent auction? Do you know anyone with a vacation home willing to donate a week to the TSA of Texas? And of course, if you would like an invitation to the Gala, we would love to send you one.
You would be surprised at the amazing resources a large, diverse and creative group such as ours could come up with if we all work closely together for our collective good. Please help us to help each other. Call or email TSA of Texas today!
And from our Board of Directors, staff and from my heart - a happy, healthy, prosperous, calm and tic-free holiday season.
Lots of love,
Sheryl Kadmon, R.N., has been Executive Director of TSA of Texas for over 20 years. Feel free to call or email her at any time.
Toll Free: 866-894-8686
Emergency Pager: 800-209-0796
Save These Dates!
- Now through January 2, 2008 - Visit the Houston Museum of Natural Science to see the TSA of Texas Holiday Tree decorated with art by children with TS.
- January 13, 2008 - Participate in the Houston Chevron Marathon and help TSA get One Step Closer to a Cure! Learn More>>
January 31, 2008 - Paris: Cite des Lumieres. The TSA of Texas Gala at Houston Country Club is a festive evening of cocktails, dinner, silent and LIVE auctions and entertainment.
March 28-30, 2008 - 6th Annual du Ballon Rouge Children's Weekend. Learn More>>
April 4-6, 2008 - National TSA Conference in Alexandria, VA. Register by January 1/2008 to receive a $40 early bird discount. Learn More>>
|TSA of Texas Major Fundraising Gala on January 31, 2008|
TSA of Texas is hard at work planning our major fundraiser of the year, to be held on Thursday, January 31, 2008 at Houston Country Club. This year's gala theme is Paris: Cite des Lumieres, a Frankly French Evening
of dinner, entertainment and an auction. Guests will enjoy cocktails and wine, entertainment by The Gypsies and a gourmet three course dinner, all set in a sparkling, festive atmosphere at one of Houston's premiere country clubs. Sample auction items include six nights at a fabulous condo in Hawaii, a standard poodle puppy, airline tickets, dinners, home items and more.
Chaired by Linda Davis Blumenfeld along with Honorary Chair Vera Brown, this year's gala honors Marcie Kirkpatrick Lipsitz, TSA National board member and civic leader in the Dallas and Waco areas; June Bowen, a long-time Houston community leader; and Cathy Jankovic, media producer/editor for the Parkinson's Disease Center and Movement Disorders Clinic. Both Ms. Kirkpatrick Lipsitz and Ms. Jankovic have children with TS, while Mrs. Bowen has long been a gracious supporter of TSA of Texas. Our corporate honoree is The Methodist Hospital, also a generous sponsor of TSA of Texas over the past 21 years.
Gala is undoubtedly a fun and delightful evening, but it also serves a deeper purpose. Our January gala event acts as our major fundraiser of each year, raising the major portion of funds used to benefit the many thousands of children and families in Houston and throughout Texas who are suffering from TS via table and ticket sales, cash donations and auction proceeds. The Fund-A-Need portion of the auction even allows our guests to pledge $100 to send a TS child to du Ballon Rouge, thus ensuring our weekend camping event remains free of cost to our TS families.
Invitations to Gala will be sent out shortly. You may request one be sent to you by emailing your name and address to TouretteTexas@aol.com. Even if you can't attend, you may wish to make a cash donation or contribute an item or service for auction. Email us for more information.
Please join TSA of Texas in support of our TS families by attending or donating to this special event!
Medical Update: Tics and Tourette's into Adulthood
by Joohi Jiminez-Shahed, M.D.
Tourette syndrome (TS) is defined by the presence of multiple motor and vocal tics with onset prior to age 18 and with no other medical explanation for the tics. Most of the time, there are other features that co-exist with the tics, such as attention deficit disorder with or without hyperactivity (AD/HD), obsessive-compulsive behaviors (OCB, not always full-blown obsessive-compulsive disorder), mood disturbances such as depression, anxiety, and phobias, and other behavioral problems. The focus of this article will be to discuss factors that may influence whether symptoms of TS will remit or persist into adulthood.
TS is definitely a syndrome, with a spectrum of expression that can include any combination of the major features. For example, some may have tics with AD/HD, tics with OCB, or tics with everything. As a consequence, TS affects people in different ways. For some people, tics may be the major source of disability, while for others, it may be the AD/HD, or the OCB, or again, all of the above. It is quite common for AD/HD to become apparent by age 4, and OCB by age 7, and tics somewhere in between, usually motor before verbal. The good news for most people is that most TS symptoms resolve or significantly improve by late adolescence. Patients, parents, and doctors need to think carefully about what problems are occurring and whether or not they warrant treatment.
The worst-ever period of tics often occurs between the ages of 10 and 12, followed later by a significant reduction by the time they reach adulthood. Even though up to 20% of children may experience such severe tics that school functioning is impossible or in severe jeopardy, estimates of tic remission range from 26-90%. Other studies have shown that 20-90% of children with TS will still have tics in adulthood, but it is not entirely clear why some do and some don't. Some research has suggested that measures of hand dexterity, the volume of a brain area called the caudate, or the severity of childhood tics may predict persistence into adulthood.
The good news is that it is very rare to see an adult with tics that are as intense as when they were growing up. More often than not, adults will have milder or less intense versions of their old tics. In some rare cases, we see that tics come back after having disappeared, perhaps when people reach their 30s or 40s. We don't have good explanations for this either, but fortunately, these individuals can be treated with the same medications that are typically used to treat tics in childhood. When adults with debilitating tics are not treated successfully with medications, they may be considered as candidates for deep brain stimulation surgery, though this is best undertaken at specialized centers such as ours. To date, we have treated 2 adolescents and one adult with measurable improvements following surgery.
Some research shows that children with TS are likely to have more symptoms of OCD into adulthood even after the tics have improved. In one study, this correlated with the presence of a higher IQ. AD/HD may or may not improve. Some investigators have found that children with TS are prone to develop lifelong psychiatric problems such as depression, anxiety, and bipolar disorder. These may become more apparent at the transition through adolescence or even later. A few studies have looked at overall functioning in adults with childhood-onset TS. Approximately 1/3 of adults with childhood-onset TS will continue to experience occupational, social, or educational dysfunction, according to one study.
Because of their TS, children may have trouble with socialization, schoolwork, and self-esteem. The more co-morbidities there are, the more problems a child may have, and these difficulties may permeate into adulthood. However, the adult with TS may have new challenges, such as getting into and completing college, getting a job and/or staying employed, and developing meaningful relationships. Having said that, most are quite successful at doing so and live fulfilling and productive lives.
There are a certain number of people who will come to the doctor's office for the first time as adults for evaluation of tics. TS is usually diagnosed in childhood, unless symptoms are mild and it goes unrecognized. Therefore, on careful questioning, we often do discover that patients presenting for the first time with tics as an adult may have had milder, non-bothersome tics when they were growing up that have now resurfaced in a more noticeable manner. Such patients can be diagnosed with TS. Otherwise, there are a number of other neurologic conditions that can cause tics that should be considered. Many of these conditions have features that are highly unusual for TS, and therefore are readily recognized.
Adults with TS who still have problems with OCD and/or AD/HD are treated with the same types of medications as children with TS, with little long-term risk. Tics are treated essentially the same way as they are in children as well, but with a few exceptions. Depending on the severity of tics, different medications can be used. Botulinum toxin offers relatively little risk, because it is injected directly into muscles that are producing the abnormal movements. This works best for a facial (e.g., eye blinking or rolling) and neck tics (e.g., "whiplash" tics"), or other single, relatively simple tics involving one body part (e.g., in the vocal cords, hand or shoulder). Topiramate, a seizure medication, carries no risk of tardive dyskinesia (TD), a condition mentioned by Dr. Jankovic in the last newsletter. It also has a different side effect profile than other agents, and may not be as effective when there are multiple, complex, or severe tics.
However, when dopamine blocking medications are needed, they can and should be used, following a careful discussion of the risks and benefits of such treatments. Even though these medications are highly effective, they can be associated with TD, and this risk is higher in adults than in children. Because of this, I try to use topiramate first, both in children and adults with tics. Using topiramate first may also reduce the need for or the dose required of stronger medications. Fortunately, tetrabenazine (a different type of dopamine blocking agent) does not cause TD, and is now on its way to being available for prescription in the United States. Until then, it continues to be available through our clinic.
Symptoms of TS can persist into adulthood, though they are generally not as distressing as they were in childhood. Many factors that are not well understood may determine this. Despite this, it is important to remember that most children with TS will still live normal lives as adults, and should be encouraged to pursue their hopes and dreams. Treatment options for adults with TS are quite similar to those for children, but specific thought should be given to the potential side effects before starting treatment.
Joohi Jiminez-Shahed, M.D. is an Assistant Professor of Neurology at the Parkinson's Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston. Click here for further information.
|Important TSA Supported Research Opportunities|
| The Psychiatric and Neurodevelopmental Genetics Unit (PNGU) seeks to achieve a better understanding of the origins of disorders such as Tourette syndrome (TS), Attention Deficit hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD), with the hope that a better understanding of these conditions will also lead to advances in their treatment. Current projects include identifying genetic contributions to TS, ADHD and OCD. Dr. David Pauls, the director of the PNGU and a behavioral geneticist, has for the last 30 years focused his research primarily on neurodevelopmental disorders such as TS, ADHD, and OCD. The PNGU is a part of the Center for Human Genetic Research at the Massachusetts General Hospital in Boston, MA, and is staffed by researchers representing a variety of disciplines and with affiliations to the Harvard Medical School and Whitehead Institute.
The PNGU team is planning to come to the Houston area in March, 2008 to have study visits with interested families on the following studies:
1. Genetic Linkage Study of TS: This National Tourette Syndrome Association (TSA)-sponsored study aims to identify the genes responsible for TS. Conducted with the collaboration of an international consortium of researchers, this study will clarify the role of genes in the occurrence of TS within families. This study seeks families with one TS-affected individual over the age of six and both of their biological parents.
2. Family Genetic Study of TS, ADHD and OCD: This project explores the familial relationship among TS, ADHD, and OCD, and will specifically examine the shared behavioral components of these three conditions. We expect that this research will further our understanding of how these disorders are expressed, and will promote the identification of susceptibility genes. This study includes children six years of age and older who have been diagnosed with TS, ADHD and/or OCD, both of their parents and any siblings over the age of six.
Individuals who are interested in learning more about these studies are invited to call 1-800-471-2730, or email the project director, Dr. Cornelia Illmann, at firstname.lastname@example.org. Learn more>>
|Kids with TS: Deep in Our Hearts in Texas!|
| That sentiment is especially true this Holiday season at the Houston Museum of Natural Science. TSA of Texas is proud to be one of 14 organizations invited to participate in a 20 year plus tradition at the HMNS, decorating a live 12 to 14 foot Holiday tree to showcase our group. Located in the Museum's Grand Hall near the Cockrell Butterfly Center, our beautiful Holiday Tree is easy to find and hard to miss.
Our tree, entitled "TS Kids: Deep in Our Hearts in Texas" is Texas-themed and decorated in red, white and blue ornaments. Our tree is adorned with Texas shaped self-portraits made by kids with TS, as well as heart shaped photos of our kids at the du Ballon Rouge Children's Weekend.
Our thanks to HMNS Guild Volunteer Debby Posso; HMNS Guild Holiday Tree Event Chair Ali May, and the entire Museum Guild for allowing us this opportunity to promote TSA of Texas in such a fun and delightful way. Additional thanks go to Sheryl, Debby, Barbara, Dianne, Brenton, Dianne, Marsha, Robert, Daniel, Beverly, Chase and Cindy for decorating the tree. Kudos to Daryl for creating a special "TS angel" which now lovingly sits atop our awesome tree.
Our deepest thanks are extended to all the children with TS and their families who provided us with the self-portraits and pictures used to decorate the tree. The Holiday Trees will be on display at the Houston Museum of Natural Science through January 2, 2008. Stop by to enjoy the trees and while you are there feel free to share information about TS with fellow Museum visitors.
|Team TSA: One Lap Closer to a Cure in Houston on January 13, 2008|
|TEAM TSA has been accepted into the Chevron Houston Marathon for January 13, 2008! TEAM TSA members run, walk or cycle to benefit more than just their own health. With every step they help TSA get One Lap Closer to a Cure for Tourette Syndrome. The Houston marathon offers a wide variety of events to accommodate all different skill levels. It combines a competitive fun athletic event with a citywide festival of community spirit. Runners and spectators enjoy miles of non-stop entertainment provided by the unique "Hoopla Brigade." Professional and not-so-professional performers ranging from jump-rope squads to jazz bands to belly dancers encourage runners and walkers to keep their feet moving. Please join our mission. Your support makes a difference! Learn More>
|Register Now for the du Ballon Rouge Children's Weekend |
by Michael Conway, dBR Director
du Ballon Rouge (dBR) is a unique time and place for children diagnosed with Tourette's syndrome (TS). Held each year in the hill country of Texas, dBR provides attendees with opportunities of fishing, horseback riding, canoeing, arts and crafts, a ropes challenge course, swimming and team sports. More importantly, it provides an opportunity to spend time with others with TS and to not worry about exhibiting their tics. The weekend experience can have a positive impact on a child and improve the quality of their life. The program is designed for children between the ages of 6 and 18 whose primary diagnosis is TS.
Currently, thanks to support from our wonderful donors, there is no cost for campers
to attend dBR. Campers are assigned to cabins based on their age and gender.
Register now for the 6th Annual du Ballon Rouge Weekend scheduled for March 28-30, 2008. Learn More>> and Download Application. Space is limited so please register by completing your application as soon as possible. Please note that the form from your physician must be signed within eight weeks of the date of camp, but all other forms can be turned in at this time. Acceptance letters to camp will be sent after all paperwork has been received, reviewed, and approved.
|TSA Testifies at SSA Hearing - Tell Us Your Stories|
National TSA was recently invited to testify at a U.S. Social Security Administration (SSA) sponsored government hearing on Compassionate Allowance Outreach on Rare Diseases. TSA Board Member, Nancy Thomas Baker presented TSA's testimony before the committee. The hearing was called in response to public concern about the eligibility requirements (SSA Disability Listings of Impairments) as well as the lengthy hurdles and other unnecessary burdens disabled people with uncommon disorders face when applying for SSA assistance. Also, a stated goal of the hearing was a commitment by the SSA to consider ways to reduce these long delays and do away with other obstacles encountered by the community of disabled citizens.
The SSA Commissioner has asked TSA to provide the Agency with additional information. To that end, we would like to learn about as many compelling stories as possible. This is an exciting opportunity to influence change and help the most severely affected people with TS! Please write to us if you have experienced difficulty getting SSA benefits, such as Social Security payments and Medicaid/Medicare health insurance coverage. This will help TSA continue to urge the SSA to include TS on its list of impairments, base eligibility criteria (for SSA disability) on both diagnoses and severity of symptoms, broaden the definition of medical evidentiary requirements, and add observation to the final screening process. Learn more>> about how you can help.
|Could TS Symptoms Impact Your Communication with a Peace Officer?|
|Texas Transporation Code 521.125 allows the Department of Public Safety to include on an individual's driver license any health condition that may impede the individual's communication with a peace officer. The health condition must be evidenced by a signed statement (form DL-101) from a licensed physician. The health condition as stated on the DL-101 form will be printed on the reverse side of the individual's driver license. The DL-101 Physician's statement may be picked up at any driver license office. Please note that medical information provided under this program is not protected and is subject to release under the Public Information Act. If you have further questions, please contact the Texas Department of Public Safety at (512) 424-5089.|
|13th Annual Tee Off for Tourette a Huge Success!!!|
by Daryl and Barbara Brister, Tee Off for Tourette Chairmen
Our 13th Tee-Off Golf Tournament was a success -- even though we were rained out on our original date of Oct. 22. On our rescheduled date of November 12, we had over 120 golfers show up to support the TSA of Texas. Great weather, loads of fun, and a very worthwhile cause made for a great day!
With plenty to eat and drink, everyone took off to participate with hopes of winning the Tee Off for Tourette tournament. At the end of the day, we had three teams that had the top scores, a closest to the pin and long drive winner. In fact everyone ended up winners, as each golfer walked away with a nice door prize. Our silent auction was a huge success as well, helping to raise even more funds. Our volunteers and donors were once again a major help and we couldn't have done it without them. We are still tallying the final numbers, so check out the TSA of Texas website soon to see how much we raised to help TS Kids in Texas.
We are already planning for next year's Tee Off, so now is the time to get involved and help us. If you are interested in starting a TS golf fundraiser tournament in your area, please let me know and we can help you get started.
Daryl and Barbara can be reached at email@example.com.
|TSA of Texas Museum Day|
Dinosaurs, butterflies, deep sea creatures, hands-on science, a lagoon nature walk - and more! These are a few of the amazing, exciting, educational and most of all fun exhibits and activities TSA of Texas families from all over the state enjoyed during our first annual Museum Day on Sunday, November 11. Over 250 children and adults were treated to museum trips, most including IMAX or other special exhibits, courtesy of TSA of Texas.
Our deep thanks goes out to: The Bob Bullock Texas State History Museum, Austin; The Austin Children's Museum; The Museum of Nature and Science, Dallas; the Fort Worth Museum of Science and History and National Cowgirl Museum; the Houston Museum of Natural Science; and the Witte Museum in San Antonio.
All attendees reported positive, glowing reviews of the fun and camaraderie they experienced that day - so look for our second annual Museum Day next November. This activity sounds like a keeper!
If you have other ideas for state-wide activities, please let us know. Bringing TS families together for support, especially in a joyful environment, is one of our goals!
|My First TEA Conference |
by Emily Stark, North Texas Support Group Leader
PART ONE of TWO
Since my son was diagnosed with TS in 2003, we have worked hard to get a support group going in the North Texas area and keep it going. In doing so, I have had the opportunity to meet many people within Texas Education Agency (TEA), more specifically within Region 10, which covers Dallas County and six surrounding counties. In 2004, working with Margie Gunther, the Special Education Director for the Carrollton-Farmers Branch ISD, I was introduced to Ivan Vance, Senior Consultant, Parent Involvement and Mental Health, Special Populations, Division of Instruction, Region 10, Texas Education Agency.
Through Ivan and Region 10, we have been able to bring speakers to our area to help educate our parents, nurses, teachers, counselors and administrators about TS and all of its co-morbid. Ivan has brought in Sheryl Kadmon, the Executive Director for the Tourette Syndrome Association of Texas, whom we all know and love; Brad Cohen, school teacher in Atlanta, GA and author of Front of the Class - How Tourette Syndrome Made Me the Teacher I Never Had; and also Sue Conners, the Tourette Syndrome Association's Education Specialist. Ivan has helped those of us in the North Texas Support Group by bringing in these presenters to further educate and provide us all with the correct information necessary in order to serve our children's needs and help them succeed.
When Ivan contacted me about the Parent Organizations Academy (the first and hopefully an annual event) and asked if I would like to participate and represent our Region, how could I refuse? I wasn't even sure when he asked me what I was getting myself into, but Ivan has helped us so much, it wouldn't have mattered, I would have returned the favor. What I didn't realize was, once again, he was helping me. And by providing me with information, I can then help others. I initially thought this was going to be an open forum with speakers coming in to discuss the dos and don'ts of special ed and we would be allowed to get in our two cents! It was that and so much more!
The topics presented and discussed were the Texas Assessment Program for Students With Disabilities; Transition Planning; Response to Intervention; Texas Behavior Support Initiative: Schoolwide Positive Behavior, and the Texas Complaint Resolution Process. In attendance were a representative from each of the twenty (20) Regions in Texas, and a representative from a group in each Region that supports parents who have children with disabilities and are in need of special services. On the last day of the conference, they provided time for each individual support service group to stand up and give a brief explanation of their organization and what the organization does. I have listed those websites and/or contact information at the end of this article.
When your child receives a diagnosis of any type of disability, it is devastating as a parent. You bounce back and forth between guilt and loss and all the child wants to know is "Am I going to die from this?" Then you go to the school with your diagnosis and usually what you find is the school wants to cooperate, but they don't want to do more than is required, and they won't tell you what you can and cannot do for your child. This is where your Special Education Department comes in. Every school district has one and each Region has a fully staffed department to assist you in determining what you are entitled to as far as special services for your child's individual needs
While attending the conference, after the first couple of hours I realized that the speakers were talking in code. Fortunately for me, I was familiar with most of it and I had Ivan next to me to define what I didn't know. However, I unintentionally ruffled a few feathers when I raised my hand to discuss the whole "code" issue. I cautiously explained that when a parent comes to the school for help, they have recently received a new diagnosis for their child, they are naturally upset, don't know what to do, and don't know what to expect from their school personnel. Then school personnel start talking about IEPs, BIPs, ARDs, RTIs, and the list goes on. The parents feel confused, maybe even like they lack the intelligence to help their own child; it's very frustrating. It is always important to ask questions if you don't understand any part of the process. School personnel hold many of these meetings and sometimes forget that we, as parents, don't always know what they are saying. NEVER feel embarrassed if you do not understand; you cannot help your child otherwise. Needless to say, the ruffled feathers were soon smoothed out!
IEP - Individual Education Plan
BIP - Behavior Intervention Plan
ARD - Admission, Review and Dismissal
RTI - Response to Intervention
Let's start with the Assessment Process. The general idea behind the process of getting your child "in the system" goes something like this: you make a request IN WRITING regarding your child's issues; you send this request not only to your campus personnel, and also to the special education department for your district, requesting your child be evaluated for Other Health Impaired (OHI) due to Tourette's syndrome and any other co-morbidities (e.g., OCD or AD/HD), if you are aware of any at the time of your TS diagnosis. If your child should go through some diagnostic testing at the school, tell your child about this testing process. Help them to understand it is not a test for a grade so they won't be nervous, and also let them know they are not in any trouble because of the testing.
Teachers can also refer a student for testing if they feel there is a problem in the classroom. BUT, keep in mind that school personnel cannot diagnosis your child. They may be able to suggest, but they are not licensed medical professionals and you should only accept a diagnosis from a doctor. After the diagnostic testing is completed, a group at your school will review the tests and make a determination as to whether your child should or should not require special services. This group at your child's school will usually consist of one or more your child's teachers, the counselor, the behavior specialist, the diagnostician, the content mastery lead, an assistant principal and/or the school nurse. It does not have to be all of the parties listed above; it can be a committee of just two or more. However, if you do not agree with the schools assessment, you can appeal.
If you and the school agree on the assessment of your child, you start the ARD process whereby you outline your child's IEP and BIP. This entire process, from your letter writing and receipt of such by school personnel, to the end result should all take place within ninety (90) days. However, most attendees at the conference agreed that they try to get the end results and meetings scheduled within thirty (30) days. All of this begins your journey into accommodations for your child to meet your child's specific needs, to ensure that your child is successful.
It was also discussed that if your school does not suggest certain services be brought in to help your child, then you need to suggest to the school what you, as the child's parent, think your child will need in order be successful. Who knows your child better than you? For example, if your child has trouble with handwriting and they do not offer a suggestion like note taking assistance, or offer the use of a computer for typing assignments, you should suggest this to them. All school districts have funds set aside for just this purpose. If each classroom does not provide a computer for your child, then you can suggest some type of word writer product that the student can carry with them from class to class, download to one main computer, and get print outs of all they have typed each day. They refer to these as ATs, Assistive Technology. Again, this is just an example, as there are many, many things to assist your child.
This article is based upon information gathered by Ms. Stark at the Parents Organization Academy Conference on November 15-16, 2007. The conference was sponsored by the Parent Coordination Network, Region 9 ESC, and the Texas Education Agency. If you have specific questions regarding your child or school, please contact Sheryl Kadmon, TSA of Texas Executive Director, at 281-238-8096.
Look for Part Two of this article in the next issue of "Bonne Nouvelle". Part Two covers the Transition/Graduation and Response to Intervention portions of the conference.
|Texas Support Groups|
|TSA of Texas has support groups in Austin, Channelview, Clear Lake, Dallas, Fort Worth, Golden Triangle, Katy, North Houston and San Antonio. Learn More>>. To start a support group in your area, please contact Sheryl Kadmon, Executive Director of TSA of Texas, at 281-238-8096 or toll free at 866-894-8686. |
|Support Group Spotlight: North Texas |
by Emily Stark, North Texas Support Group Leader
Our group has been busy since school started. We had a "Back to School" Presentation in August, held at Region 10, with Sheryl Kadmon, our very own Executive Director of TS of Texas, as our speaker. Parents, teachers and administrators were invited and the turnout and presentation itself were excellent. We all went away with some great information for our schools, as well as getting to see some great pictures of the kids from camp in Sheryl's new power point presentation.
With school starting later this year, we kicked off the new year with a back to school swim party in September -- with seven new families joining us that day. As it is for most of these children in the beginning, some of them had never even seen another person with TS before. It was great to see them all interacting and getting along.
In October we held an ice cream party at the park and had two new families join us. The kids made ice cream sundaes, played in the creek and even worked on some crafts (provided by TSA of Texas!) The kids all get along and have such a good time together, and the parents visit and talk about problems and help each other with solutions. Also in October, Stacy Gayan and I worked the Frito-Lay Disability Awareness Week. We set up a table full of goodies and literature provided by National TSA, and we spoke to at least half of the 3,000 employees there, and picked up 4 or 5 new families too. It was a great experience! We hope to be invited again next year.
In November, all across the State of Texas we had TSA of Texas Museum Day. WOW - was that fun! The North Texas Group and the Fort Worth Group linked up at the Dallas Science and Nature Museum. There were approximately 75-80 of us on hand to enjoy the experience. The kids get a little more at ease with each other at every event; it's really great to watch them interact, help each other out, and compare tics! (This part always amuses me - the kids seem to get so excited when they find out someone else is doing something they've also done, and then they laugh about it).
Also in November, I attended the first Parent Organization Academy sponsored by the Texas Education Agency and Region 9. Ivan Vance (Parent Advocate/Special Ed Director for Region 10) and I, as the representatives from our area, attended the first (of hopefully many more to come) two day conference in Austin in which we listened to speakers from Texas Education Agency explain the Texas Public Schools System and how Special Education works (or is supposed to work). It was very interesting and informative! I hope to be invited back in future years.
In December we held our annual planning meeting for the coming year. While the kids played games, did crafts (making snowmen, necklaces and calendars) and watched the new Tim Allen movie, Santa Clause 3, the parents discussed 2008. We had my niece, Autumn Schnitzius, on hand to work with the kids and keep them occupied, so the parents could discuss what we want to do for next year. We had some new members attend for the first time, although they had previously joined the group via email, this was their first face to face meeting. It's always exciting to have new voices join us!
We'll be posting our 2008 calendar on www.TouretteTexas.org soon, so stay tuned for more activities as well as fund raiser ideas! I hope everyone has a healthy, happy holiday season!
The North Texas TS Support Group meets the second Saturday of each month. For more information, contact Emily Stark at 972-307-1903 or firstname.lastname@example.org or Michelle at email@example.com.
|Remembering Our Military This Season|
Contributed by Carrie Edwards
Chad Patrick, brother of our own Carrie Edwards, is currently serving in Iraq. Please remember our military this season and all through the year. Consider sending a greeting or perhaps a small package, to the following members of Chad's troop: Patrick, Chad; Hallo, Andrew (another Texan!); Bedell, Derek; Robertson, Bill; Vohs, Joshua; Ybarra, Christina; and Durham, Jeremy. All correspondence should be sent as:
Last Name, First Name
236th MP CO
APO AE 09387
Suggestions for soldiers packages: letters, cards, canned chicken, canned vegetables, Rotel, Velveeta, Ramen noodles, macaroni, crackers, canned chili, chips, Dr. Pepper, beef jerky, gum, candy, sunflower seeds, popcorn, Febreeze, candles, Visine, hand sanitizer, mouthwash, wet wipes, magazines, DVDs, Carmex (soft tubes), deodorant, razors, body wash, rewritable CDs, pocket size flashlights, binoculars, lighters with caps (Zippo style), and charcoal (Matchlight). When it comes to nonfood items (gadgets), bigger is not better! Small items that they can stick in a pocket or clip to their vest are easier for them carry. You may not send pork or tobacco products. Use your imagination! They will love anything...especially to know we are thinking of them! And be sure to mention you read about them in the TSA of Texas newsletter.
|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 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 on 1/31/2008),
- DONATING an item or gift certificate for Silent Auction at Gala,
- ORDERING a tribute card sent in honor of someone's special event,
- PARTICIPATING in TEAM TSA events,
- CONTRIBUTING via cash, check or credit card to our general fund,
- LINKING your Randall's Remarkable Card to charity #2493, and
- REQUESTING a Kroger Share Card.
All donations are totally tax deductible. Learn More>>
Carter Berry (age 11) won the third place medal for his age division in the Keller "How the West was Run" 5k race in September. Carter is not letting TS slow him down! Ryne Nardecchia (age 12) has acted in numerous shows with youth theaters, and is now making his adult professional theater debut as Flick in A Christmas Story. The show will be at Texas Repretory Theater in Houston on Thursdays through Sundays from December 5-30. Bernie Villanueva (age 18) has been working hard on his school's wrestling team, even recently competing in a tournament against eight other schools! Congratulations to these hard working Super Stars!
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. Or -- is there a topic or story you would like to see us cover in the future? A question you have for our Medical Advisory Board? Send your question, story and/or pictures to TouretteTexas@aol.com.
Bonne Nouvelle is published quarterly by TSA of Texas. It is edited by Shelley Matcha and Cindy Sacks.