Spring 2013

Volume 7, Issue 2

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 are plagued by obsessive compulsive disorder, attention deficit hyperactivity disorder, dysgraphia and behavioral 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. 

Michael Conway

  Tourette Syndrome Awareness Month has just begun (May 15) and will end on June 15. 

    Reading that statement really doesn't trigger much excitement - at least not for me.   An "Awareness Month" sounds like a time when there would be celebrations, parades, and other events to highlight and educate the public about a particular cause.  However, unless I go to a Tourette Syndrome (TS) related website or function; I really don't see any additional information during this 'claimed' month of awareness.  Do you?

     I have realized the reason that Tourette Syndrome Awareness Month seemed no different, than any other month of the year, is because I wasn't doing anything special to bring awareness to it.  I realized it was not only my opportunity, but my responsibility, to be the source of awareness.  I was supposed to be, essentially, the promoter of the celebration, the leader of the parade!

     Most of us, including me, don't have the opportunity to host a televised event or parade to educate more people about TS and its related conditions.  So I started to think of a creative way to bring focus to TS, and, more directly, what amazing services our Chapter provides to our TS families throughout Texas.

Naturally, I focused on my favorite service that our chapter provides - Camp du Ballon Rouge - our weekend camp for children who have been diagnosed with TS.  But what talent did I have that would provide an avenue that would cause people to notice?  I found that talent and researched a way to bring 'light' to my cause.

     I would enter a voting contest in hopes of earning a race entry slot in the Kona IRONMAN World Championship on October 12 in Hawaii!  In the IRONMAN's Kona Inspired program, individuals may submit a 90-second video explaining how their story represents the IRONMAN mantra - "Anything is Possible!"  Entering a video was a 'no-brainer' as this mantra alone represents what we strive to instill in our campers at du Ballon Rouge!

     This quest is the path to my parade, my celebration.  As you will see, in the video, my primary purpose is to be an example to children, living with TS, that they too can accomplish great things.  I also reference our amazing camp as well as a new fundraising project I have just begun - Tri for Tourette.  Tri for Tourette will be a way for us to raise funds for our camp through competition in triathlons. 

     An IRONMAN race, which must be completed in 17-hours, consists of a 2.4 mile swim, followed by a 112-mile bike ride, and finishes with a marathon.  This Saturday, I will be competing in my first IRONMAN in The Woodlands.  I am nervous, I am just starting to feel overwhelmed, and I will be ticcing the entire time - but isn't that what our children with TS go through everyday?  The campers at du Ballon Rouge are what will keep me strong and thinking of what they endure, every day, is what will push me through to finish what I started!

     During the next month, challenge yourself to discover what celebration or parade you will 'throw' to bring awareness to TS and/or our Chapter! I know every one of us has a talent that can be used to educate others about TS.  Take the time to discover that talent!

     To the campers of du Ballon Rouge, and all of us with Tourette Syndrome, I am looking forward to crossing that finish line with you this Saturday night!

Sincerely,

Michael

KONA Inspired video.  

Or -- watch via Facebook HERE. 

 Let's cross the finish line together!

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. 

Dealing with Problem Behaviors          By James Poysky, Ph.D.

Kids with TS are at increased risk for having significant problems with arguing, not following directions, temper tantrums, or refusing to do what they are asked. Our first inclination is to jump to the conclusion that they are doing these things because they are trying to manipulate others, because they are "immature", or because they derive some pleasure in making life difficult for the rest of us. 

Sometimes these explanations may be sufficient.  However, I often see kids with TS who keep demonstrating these behaviors over and over, EVEN WHEN IT IS NOT WORKING OUT FOR THEM.  Everyone is angry with them, they are in trouble all the time, they are failing in school, etc., but they keep on doing it.  When we see this kind of ongoing pattern, we need to consider the possibility that these behaviors are occurring because the child has weaknesses in certain kinds of specific problem-solving skills.  For example, their oppositional and argumentative behavior may be happening because they have a deficit in their mental flexibility.  In this regard, they are overly "rigid" in their thought process and expectations, and get "stuck" when things don't turn out like they wanted or expected.  To put it another way, they have an inability to be adaptive in their thinking, and when they are put in a situation that taps into this weakness they resort to less effective and/or counterproductive behaviors (arguing, refusing to comply, etc.). Or they may have difficulty with other kinds of mental skills, such as effective communication, controlling their emotional reactions, delaying gratification, or making decisions based on what might happen in the future - rather than on how they feel in the immediate moment.  The ironic thing is that the parts of the brain that appear to cause tics are the very same parts that are usually responsible for these kinds of cognitive skills.  Weaknesses in these areas can happen even when the child has normal or above normal intelligence.

When thinking about how to address these behaviors, you have to keep in mind that the child's behavior may be due to a weakness, and navigating the situation is difficult for them.  Adopting an overly punitive approach (i.e., mostly focused on punishment) with children who have these types of cognitive weaknesses usually results in escalation of conflict, power struggles, and an increase in negative behaviors. Basically, everyone is mad and upset and trying to "win".  Thus, it may not be only be about teaching the child who's the boss, and forcing them to "learn it the hard way".  While there is still a place for them, simply relying on rewards and punishments may not be enough.  A better way to look at these kinds of situations is to see them as opportunities to help the child develop better problem-solving skills, so that the next time this situation comes around they will be better equipped to deal with it.  Plus, this kind of mindset prevents parents from viewing the situation as "me against you", and instead focuses on teamwork.  As a result, there are more positive interactions between the parent and child, which leads to better relationships, closer emotional connections, improved self-esteem, and less resentment and bitterness.

GENERAL STRATEGIES:

1)     Be extra patient.  How can we expect them to control their temper if we can't control ours?

2)     Talk in a quiet, calm voice.

3)     Use humor when possible, but don't use inappropriate humor. Even though it quickly gets their attention, they can have difficulty knowing when to stop.

4)     Give multiple advance notices of transitions ("10 minutes until...", "5 minutes until...", "1 minute until...", etc.).

5)     Say what you mean and mean what you say.  Be concrete and specific in your communication, and do not assume that they will make inferences or "read between the lines" when things are not stated clearly.

6)     Give one direction at a time, use praise and encouragement when they follow-through.          

7)     Do not engage in arguing and power struggles. "Because I said so!" rarely works.  Try to re-direct / change subject (which lets them disengage).

8)     Focus on the positive and look for opportunities to say "Yes" instead of "No" ("Yes, you can have ice cream as soon as you...").

9)     BE FLEXIBLE, and willing to negotiate, compromise, and problem-solve.  It doesn't help the situation if the parent is being just as hard-headed as the child.  This does not mean that you should just give in to the child's demands.  Being a rigid disciplinarian doesn't usually make the situation better, but being a push-over doesn't teach the child better coping strategies either.

REWARDS:

1.     Only use rewards for the one or two things that you really want to target (i.e., the things that routinely cause the biggest problems).

2.     Make sure the expectations that need to be met are clear and specific.  The more specific the better.  Then it will be clear what exactly needs to happen, and there is no room for uncertainty or disagreement about whether or not the expectations has been met.

a.     Vague: "Clean up your room."

b.    Specific: "Pick up your clothes and put them in the dirty clothes bin. Put your books on the book shelf.  Throw away all garbage, including food wrappers, soda cans, and old papers.  Take dirty dishes to the kitchen sink."

3.     Expectations should be based on what the child needs to do TODAY, not long-term.  Think about what it takes on a daily basis to reach those long-term goals.

a.     Bad: "Earn all A's and B's on your final semester report card."

b.    Good: "Work on your math problems, numbers 1-15, from 5:00 to 5:30 without complaining, arguing, or getting out of your seat.  If you get them all done without more than one mistake, you earn the reward."

4.     Expectations should be realistic, not ideal.  Nothing tanks motivation faster than an un-achievable goal.

5.     Rewards need to be GOOD (which is another reason to not use rewards for everything).  Rewards need to be good enough to:

a.     Help the child remember and keep in mind what they need to do.

b.    Over-ride any negative feelings they have about doing what they have to do.

6.     Rewards should be given IMMEDIATELY after the expectation has been met.

1.     Reserve punishment for malicious, purposeful behaviors, done with intent (stealing, breaking someone's toy just to get back at them, physical aggression, lying).

2.     Try to use natural consequences for lesser infractions.  The goal is not to focusing on "catching" them when they mess up; rather, the goal is teaching them that when they make a mistake they need to take responsibility and try to make things right.

3.     Example:  There is a household rule of no bouncing, throwing, or kicking balls inside the house.

• The child disregarded the rule, bounced a basketball, and broke a lamp.
• Explain that this is why the family has this rule.
• Inform the child that he/she is not in trouble, but he/she needs to try to correct their mistake.
• Help the child clean up the broken lamp.
• Go get money from the child's piggy bank to pay for a new lamp.
• Go with the child to Target and buy a new lamp.
• If they do not have money, then assign two chores for the child to do in order to earn money to pay for a new lamp.
• If he/she refuses to do the two chores, that is fine and does not need to be a point of contention.  Emphasize that it is their choice and up to them.  However, if they choose not to do this, then the parent has the right to go into their room, pick two toys of the parent's choice, and sell them in order to get money to pay for a new lamp.  It is then up to the child to decide what they want to do.

DE-ESCALATION and PROBLEM SOLVING:

In situations where the child becomes "stuck", upset, frustrated, angry, oppositional, etc., use active listening skills to de-escalate the situation and promote problem-solving:

10)  Validate how they are feeling ("Wow, I can see you are really frustrated...", "Gosh, I can understand how that could make you mad...").  You can validate how they are feeling, even if you don't agree with them.

11)  Paraphrase back to them what you are hearing ("It sounds like you thought it wasn't fair...")

12)  Ask questions or encourage them to say more:

a.     "Tell me more..."

b.    Open-ended and non-specific questions are better ("What happened?", "What was the most frustrating part?")

c.     Some kids have a hard time describing things and need more specific questions ("Were you upset when he said...")

13)  Invite them to be a "team" ("I'll bet we can figure this out together, what are some solutions that might make both of us happy?")

14)  Try to come up with a solution and/or compromise that makes everyone satisfied.

a.     Have the child try to think of some solutions before you offer your own.

b.    Don't just give in to what they want, because this doesn't teach them anything.

c.     The parent should be flexible and willing to compromise as well.

d.    Don't be too quick to jump to this step.  They have to be heard and validated first, or else they will just feel like you are telling them what to do.

15)  DON'T do the following things, as they will escalate the camper's frustration:

a.     Ask them "Why?" ("Why are you mad?", "Why did you do that?").  It is perceived as judgmental.

b.    Don't point out how they are wrong ("Yes, I know you're upset but..."

c.     Don't give them advice ("Why didn't you just...")

d.    Don't try to change behavior with criticism ("Why can't you just grow up?")

Helpful Books:

"The Explosive Child" by Ross Greene

"No More Meltdowns" by Jed Baker

James Poysky, Ph.D. is a neuropsychologist in private practice at Katy Child Psychology Associates in Katy, TX.  Among other services, he provides testing for school problems and parenting strategies for oppositional & argumentative children.  Dr. Poysky is on the TSA of Texas Executive Board and he also volunteers frequently at the Texas Camp du Ballon Rouge as a camp psychologist.

     School is finally almost finished for the year --  no more rushed mornings, no more homework fights, no more bedtime meltdowns -- right?  But, what DO you do during the summer?  

For our next newsletter, we want to provide you with some "Super Summer Survival Strategies" and would like your help!  What have you and your child discovered makes a great summer and helps you both relax and unwind, but still keeps everyone on target for the next school year?

Send us your cool ideas for things to do in Texas.....

Email TouretteTexas@aol.com or fax to 281-238-0468.

     The Friday Neurology Clinic at Texas Children's Hospital Tic and Tourette Syndrome Clinic in Clear Lake is now designated solely for children with Tourette's syndrome and Tics. This new Clinic is exclusively designed to better meet the needs of children with Tourette's syndrome and will focus on medical management of tics; address concurrent conditions associated with Tourette's Syndrome, such as ADHD, anxiety, migraines, etc.; and provide family education and proactive measures for school and home issues associated with tics and TS.

     Please call 832-822-1250 to book appointments at for the Friday Tic Clinic.  Do NOT use the central TCH scheduling number as they will not have access to book these spots. 

The Friday Neurology Clinic is managed by Amber Stocco, M.D.  

• May 15 - June 15 - National Tourette's Syndrome Awareness Month.  Help us spread information about TS to your schools, businesses, physicians and more.  Visit the web for handouts or contact the office for packets of information. Be sure to read the article above for awareness events around the state!
• May 18 - FREE tickets to San Antonio Scorpions home game, courtesy of The Harvey E. Najim Family Foundation and the San Antonio Scorpions.  Contact Cindy at TouretteTexas@aol.com for details.  
• May TBD - Rio Grande Valley TS Support Group meeting and Kung Fu exhibition. Email cpj.mission@gmail.com 
• May 25 - The Gordon Hartman Family Foundation's 2nd Annual Wonderland Ball - Prom 2013! 

   5:00pm - 8:00pm at the Event Center at Morgan's Wonderland.  This dance is for individuals with special needs ages 16 and up only please.  Online RSVPs only for this dance. 

• June 7 - Gulf Coast TS Support Group party at IT'Z Pizza. Emailjj01ut2005@yahoo.com
• June 8- Dallas/North Texas TS Support Group meeting. Email amwa@swbell.net
• June 8- Fort Worth TS Support Group meeting: Wear your "Cheesiest" Prom outfit!  Email srruyle@aol.com
• June 9 - Lubbock Support Group swiming party. Emailpzweaks@yahoo.com
• June 12- Katy/Sugar Land/West Houston TS Support Group meeting
• June TBD - Rio Grande Valley TS Support Group summer party. Email cpj.mission@gmail.com
• July 4 -- 4th on Broadway 4th of July Parade -- Lubbock, TX.  Watch for the Lubbock TS Support Group's float: "Imagine Lubbock Together..Understanding Tourette's"

Details to be available soon on other Summer Parties throughout the state.  

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,
• 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 
• DOWNLOADING a Kroger Neighbor to Neighbor bar code to link to your Kroger Share card. Click here.  NOTE:  Kroger MUST be re-lnked each year starting in June.

All donations are totally tax deductible.  Learn More>>