Thursday, January 26, 2012

Amber Stocco, M.D.

Click here to see Highlights of the January, 2011 Gala. To receive an invitation in the mail, please send your name and mailing address to TouretteTexas@aol.com.

 Our Live Auction at Gala 2012 is simply too fabulous to wait to tell you about it!  This year, we are offering a Fabulous Italian Getaway for 14 persons!

     Enjoy a week stay at Serravalle, a 20,000+ square foot Estate in Chianti for 14 guests.  The property includes an underground suite for exercise, wine tasting and other fun activities.  Arranged visits to Siena, Chianti Hill towns and Florence.  The Florence "highlights tour" includes Top pieces of the Uffizzi Gallery, Michelangelo's Davide with guide and more.  There's also shopping at Incisa/Montevarchi designer outlets and a private wine tasting in a Tuscan region winery.  Includes daily continental breakfast, full access to the estate grounds, vineyards, heated pool, jacuzzi and olive orchards.  Guests will enjoy 24/7 access to on-site, live-in estate managers and concierge support as well as maid and laundry service.  This trip, at the minimum bid, breaks down to $240 / person / day or $195* Euros / person / day - basically a private villa for the price of a 3-star hotel!  Minimum bid is $25,000.  

Gather your friends and family together to place a group bid on this once in a lifetime vacation!  View more of the Villa at http://www.serravalleinchianti.com/.  For information on placing a bid without attending the Gala, contact TouretteTexas@aol.com.

*Based on current exchange rates.

Trip expires 2 years from auction night.  Entry tickets and transport costs (if any) not included.  Tours or other visit detail subject to change if unavailable.  No substitutions or credits can be given for these tours (or any other part of the donation if not used or desired).  Non-refundable full payment due at time of winning bid.  Winner to sign acknowledgement.

     Besides answering numerous phone calls from concerned parents and educators; mailing out scores of TS information packets; providing free consulting and direct support to many families struggling with TS or in crisis; holding support group meetings across the state; participating in Macy's Shop for a Cause; hosting our most successful golf tournament ever; sending families with TS to Astros and Texas Rangers baseball games; and planning Museum Day and holiday parties, TSA of Texas staff and volunteers have also been busy increasing awareness all over Texas. A few of our highlights this quarter include:

A huge thank you to everyone who makes it possible for us to help improve the quality of life for kids and adults with TS and their families!!!

      By nature, I am a person who procrastinates when faced with a daunting task.  This is exactly why it  took so long to get our support group off the ground.  My grandson was diagnosed with ADHD in 2007 and with Tourette's syndrome in 2008.  I immersed myself in trying to find out everything I could about TS.  I read every article I could find on the web, I bought books that had Tourette's in the index, and I attended the 5th International Scientific Symposium on Tourette's Syndrome in New York City in 2009.  So I learned more about what we were facing, but I didn't have anyone to share this information with or to share our concerns, fears, and frustrations.  My grandson was on a medication that was helping for 6 months and I thought, "Wow, this isn't so bad after all!" Then the medication stopped working over a weekend and the reality of the nature of TS soaked in.

I was taking "a moment" at the local coffee shop when a friend stopped in.  We were talking about school and such and I shared with her that my grandson had Tourette's.  She looked amazed and revealed that her son had been diagnosed as well.  We sat and talked for over an hour.  It felt so good to know a real person who was going through the same thing as we were.  She and I decided a support group would be a real help to those families like us who were diagnosed and then left with ...and now what?

     With the help and encouragement of Sheryl Kadmon, Executive Director of TSA of Texas, and her staff, our support group met for the first time on August 8, 2010.  Sheryl came and made a back to school presentation to 25 adults.  There were 11 children, those with TS and their siblings, in the children's meeting which runs concurrently with the adult group.  Now we were getting somewhere! Using the "back to school information" we had the knowledge of how to inform educators about TS and how to best assist our children to be successful in school.

     We are so fortunate to have a wonderful meeting facility and an individual who opens the building and helps with set up for the meetings each month.  We try to combine guest speakers with open forum meetings so there is time to share and keep up with each other's challenges and successes. We average 11 adults and 8 children at our meetings, which meet the second Sunday of each month except for December and July.  Our children's group, which has two volunteer activity leaders, usually has a craft activity and a guest speaker or a game.  We had a bowling party in February and a swimming party in June.  The families take turns providing portions of the refreshments each month. We participated in the Back 2 School Expo sponsored by the local newspaper where we provided information about TS and publicized our group.  Thanks to Maye DeAnda, my friend who gave me that push to start the group, we also have a colorful brochure explaining TS and providing information about our group which we have distributed to area doctors' offices. Getting the word out about our meetings continues to be a challenge even though we have the support of the local newspaper and our brochures. The TSA Facebook page and the TSA website, for which we are extremely grateful, have provided information for those outside our area.

     Our group is like a family where you can be yourself. That makes me smile.

by Emily Stark, Dallas Support Group

     I am in a very large room, sitting behind a table, talking to people about Tourette's syndrome.  All around me are other organizations that also deal with neurological issues. I am talking to a teacher who tells me about her student and what she is currently dealing with, when suddenly she asks, "How do I make the parents understand that I want to help them; I want to help their child; I want us all to work together?"
    This teacher approached me -- not a parent or a child reaching out for help -- but a teacher who truly seemed to care; and it occurred to me that as parents of children with issues, we spend so much time going from doctor to doctor, getting a diagnosis, trying to find a magic pill that will make all of our child's suffering (and ours) go away.  While fighting to get the proper IEP and accommodations in the classroom, we sometimes forget that the school and staff are there to help us.  And most times, they want to help us; they want our child to succeed in the classroom so their classroom can succeed.  Keeping this mind, I want to remind all parents of children with TS and the rest of the alphabet soup, especially those of us who happen to have TS ourselves, to take a step back and remember those impulse control issues don't always just happen with our children, but with us as well.
    I am fully aware of my lack of impulse control. I have to bite my tongue all the time to keep from blurting out things I know I will instantly regret. It's not always easy, but I have found a little trick that some of you might find helpful: write it down, immediately. Get out all of your anger, frustration, outbursts, crying, all of it -- get it out of your system by writing it down, JUST DON'T SEND IT. Usually when I reread the email the next day, my important points are still valid, but the manner in which I deliver it can easily be improved.  What's that old saying my grandpa used to say - "You can catch a whole lot more flies with honey than with vinegar." Not that teachers are flies, but you get the picture!  This small step could make the difference in getting the help you and/or your child needs. 

     And remember, old dogs can learn new tricks (I'm just full of clichés aren't I?!?!).  Keep reading, keep learning!  ALWAYS.  You never know when you're going to come across a paragraph that feels like it was written to you, JUST YOU.  It may be relevant to your situation at the moment; it may be something you remember down the road that will help you; but if you stop reading and stop learning, you could miss out, and there might be something, just some small something, that could change your world.
     So my advice to other parents out there: keep reading, keep learning and remember, don't hit send right away!

Editor's note:  Diplomacy and knowledge are the key factors for smooth sailing through school. For large "bumps" in the road - the TSA of Texas office can help with free consultation services.