Spring 2013

Volume 7, Issue 3

BONNE NOUVELLE

Your "Good News" from TSA of Texas

TSA of TX:  Helping Children and Changing Lives 

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. 

Cindy Sacks

     Because the Tourette Syndrome Association of Texas is blessed with hundreds of hard-working and dedicated volunteers -- from our Board to our support group leaders; from Camp physicians, counselors and ancillary staff to Tee-Off, Gala and Targets for Tourette's Chairmen and to many, many other volunteers -- we are able to maintain a very small staff of only two full-time employees and one part-time accountant.  

     Most everyone is very familiar with Sheryl Kadmon, RN, TSA of Texas Executive Director, as she travels the state for Educational In-Service, ARD support, support group meetings, holds endless phone meetings, and so much more.  Our other staff person is Cindy Sacks, Director of Programming and Development -- and the "magic fingers" behind those thousands of emails we answer!

     Cindy first became involved with TSA of Texas, as so many of us have, when she called Sheryl Kadmon decades ago to seek help for her two sons with TS, ADHD, OCD and other issues.  Those sons are now long-grown (ages 26 and 23), but Cindy remains dedicated to TSA!  At first, Cindy did small volunteer activities, but after selling a direct-mail marketing business 13 years ago, she began working part-time and finally full-time for the organization. Promoted at the end of 2012 to her current title, Cindy not only answers those emails, but helps edits this newsletter, plans events such as Museum Day, Holiday Tree and parties, maintains the web page and Facebook, applies for grants and other funding, creates and updates all forms and non-educational materials,  works on design and layout for events, manages auction for Gala -- and lots, lots more!  

     In addition to her two sons, Cindy has been married for nearly 32 years to Howard and has two adorable Standard poodles, Jean-Claude and Maksim.  

     Want to make Cindy happy?  Read this newsletter!  Play golf at Tee-Off, purchase tickets for Gala, round up a team for Targets for Tourette's!  Link your Randalls, Tom Thumb or Kroger cards for donations!  Solicit items and certificates for Gala!  Make a donation of any size via PayPal, check or credit card.  Get involved or stay involved with TSA of Texas!  (This newsletter tells you how to do all of these -- and more!)

     Because of YOU and all of our TSA of Texas family, Cindy has "the best job in the world.  I love what I do, the people I meet and the incredible good and important work this organization does!"

Texas Hotlines

Houston:  281-238-8096

Quick Links

Support Groups

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:

• Austin 
• Corpus Christi
• Dallas
• Fort Worth
• East Texas/Golden Triangle
• Gulf Coast
• Katy / Sugar Land
• Lubbock
• North Houston / The Woodlands 
• Rio Grande Valley
• San Antonio
• Tyler / Longview

To start a support group in your area, please contact us toll free at 866-894-8686. 

How to Best Access the LSSP for Your Child with TS                     By Sandra Buffolano, LSSP

Sandra Buffolano and daughter Lauren -- who has TS.   Photo courtesy of SUZI ISSA

The Licensed Specialist in School Psychology (LSSP) can play many roles in your child's school career. In order to provide your child services, they do require permission from you in writing. This is called an "Informed Consent" and this form will need to be signed by you before an LLSP can observe or work with your child directly. If continued psychological services are needed for your child's program of 504 or Special Education, the LSSP will help determine this through related services procedures.

Here are some common roles that I provide as an LSSP:

Observation of tics: If trained in the identification of tics, the LSSP can observe your child to help in logging the frequency of tics during a particular time period (such as 30 minutes or one class period) and identifying what appears to be new, or reoccurring tics. As a parent, you may need to spend some time teaching the LSSP about your child and what his or her tics look like at home. It would also be helpful to supply the LSSP with literature about tics and TS.

Physician liason: There are times when outside physicians, counselors, or psychologists would like to speak to school personnel or obtain forms or information from the school. The school counselors and LSSPs are often good resources to outside providers. This will require a Release of Information form before school personnel share information to outside providers.

Psychological services and counseling to student: Students with TS may receive psychological services and counseling through the school counselors or LSSPs. This is usually determined to be helpful but there is a balance between missing class and gaining benefit. Students who have very difficult symptoms of TS may need to know that there is a mental health person to talk to and to be their advocate at school. Sometimes they need to be reminded that they play a role in helping teachers understand what their TS is about. If a student is being bullied, the LSSP may work with administration to help create solutions.

Teacher and Administrator consultation:  Tourette's syndrome is a very complicated neurological disorder. Education of your child's particular symptomology is a key piece in the educators' understanding of his or her needs at school. Using information provided by the Tourette Syndrome Association is very helpful for educators. I encourage them to register as educators on the national site at tsa-usa.org.

Providing resources: One of the best resources for school staff is the video: "I Have Tourette's Syndrome, but Tourette's Syndrome Doesn't Have Me." I ask all teachers and administrators to also read basic literature from the Tourette Syndrome Association and to ask questions. I also stress that each child with TS is not like any other child with TS.

Bridging parents and educators: Having a child who has TS can be a very rewarding and challenging experience. This is true for both parents and teachers. The LSSP can sometimes provide a valuable bridge of communication and understanding for all. If you find that you are in need of services described above, write an email or letter to the school asking the Licensed Specialist in School Psychology to contact you.

SANDRA BUFFOLANO is a licensed specialist in school psychology in a Texas school district and has 25 years of experience with Tourette Syndrome.  Sandy also authored Coping with Tourette Syndrome: A Book for Kids with Tic Disorders. It provides 40 activities to help children, parents, and counselors manage school, home, and community issues.  Available from New Harbinger Publications, 2008, or an amazon.com.  

 "The End of Bullying Begins with Me" is the message during the National Bullying Prevention Month in October. PACER created this national campaign back in 2006 and the National Tourette Syndrome Association has been a partner because that believes that this is the time for communities to unite nationwide to raise awareness of Tourette Syndrome and bullying prevention through events, activities, outreach, and education.

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From the National Tourette Syndrome Association:

Even one child being bullied anywhere is one too many, but reports indicate that over 160,000 children stay home from school every day due to bullying issues!  Often families affected by Tourette Syndrome contact TSA to share their experiences and seek support. 
It is heartening to learn that new and hopefully more effective approaches are being developed and implemented to address this important issue affecting our children and our schools.  Educators and clinicians are increasingly working to cultivate school cultures that won't put up with bullying behavior. Moreover, fellow students are being encouraged to step up and do what they can to end bullying among their peers. Opportunities to help our young people develop leadership skills in this process sound promising!
 
Tourette Syndrome Association offers a changing and growing array of Bullying Prevention resources for your consideration. We hope this material will provide you with ideas and strategies to effectively manage this issue. Simply put, bullying is not acceptable.  

 Access Bullying Prevention and Strategies from National TSA here.  

Note these SPECIAL EVENTS in 2014! 

January 30, 2014  

TSA of Texas GALA Fundraising Event: "

Shimmer and Shine: Shedding Light on Tourette's Syndrome."  

Our major fundraiser for the entire state. Reception, entertainment, dinner, Live and Silent Auction. Chairmen:  Margaret and TJ Farnsworth; Honorees Dr. Ian J. Butler, Randy Roach and Kathryn Hargrove.  Reserve your Table or Tickets NOW to be included in our mailed invitation. Tables of 10 start at only $2,000 and Individual Tickets start at $200.  CLICK HERE for RSVP form.

Cash donations of any size are always welcomed.  

Items and certificates for Silent Auction are also being accepted.  CLICK HERE!

 

March 21, 2014  JOIN US at our third annual: Targets for Tourette's -- Texas fun!

T4T page for photos and details from 2013.  Email Cindy at TouretteTexas@aol.com with your mailing address to receive your 2014 invitation via mail.

March 28 - 30, 2014

Physician Referral List

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, 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. 

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, Targets for Tourette's Sporting Clay Shoot in March; or our Tee-Off for Tourette in October),
• DONATING items or gift certificates for Silent Auction at either Gala or Tee-Off,
• ORDERING a tribute card sent in honor of someone's special event or sent in someone's memory  
• CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice
• MAKING A MATCHING GIFT through your employer.  Check if your company does this!
• DESIGNATING TSA of Texas to receive 10-100% of your final sale price the next time you list something on EBAY.  Or look for listings that support TSA of Texas when you shop at the
   TSA of Texas eBay Giving Works page.
• LINKING your Randall's or Tom Thumb Remarkable Card to charity #2493, or your Kroger Plus Card to #82092 (see article above)
• MAKING PAYROLL CONTRIBUTIONS via Community Health Charities. CITY OF HOUSTON EMPLOYEES - use code #1314. 

All donations are tax deductible.  Learn More>>