CONNECTIONS

CHAPTER NEWS

Chapter Planning Meeting

By Bernadette Witty, chapter co-chair

Our chapter planning event was held September 28. The purpose of the meeting was to reassess the priorities of the chapter in light of our current volunteer base. Most importantly we were trying to recruit volunteers to fill the many open positions we have involving a wide range of chapter responsibilities and projects. You would have read about these in the "Volunteer Corner" in past newsletters.
The result was positive and the board is excited about the interest and involvement of a number of new people. In attendance were the five current board members (Roseanne Torgerson, Bernadette Witty, Bill Zook, Carroll Frye and Brad Hawkins), two past board members (Nanette Rosenthal and Meg Howard-Petosa) and seven new people (Carole Jones, Lisa Nealey, Jaime Biava, Roger Sasnett, Lex Myers and the Nakasone family). Some of the major priorities for the chapter that were discussed during the meeting included the creation of more support groups, more conferences and chapter events and the organization of simple get-togethers targeting youth in particular. Areas in which people volunteered included: becoming a board member; setting up an Eastside support group; organizing activities for children and young adults; fundraising; organizing a medical conference; and identifying materials to add to our lending library.
The next step in our "Volunteer Recruitment Strategy" was to assign each of the potential volunteers a "buddy." The buddy is from the current chapter board and is responsible for both working with potential volunteers to help them understand where and how they can get involved in the chapter and to help them to get the projects started. This is the stage where we are currently. We now have a list of 8 people who have expressed interest in helping and they have all been assigned buddies. We look forward to working with each of them and bringing to fruition some exciting programs over the next 12 months. We will provide an update to everyone who has come forward to help so far. If any of the areas listed above sound interesting to you, and you would like to assist people who have already volunteered, please contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com.

Research Study Participants Wanted

• Study 1 Prospective Study
  In this study, unaffected children who are at risk for TS and OCD will be followed. This study is unique in that it follows children over time and charts the early course of these disorders. In doing so, the hope is to extend what is known about the environmental and genetic factors influencing the expression of TS and OCD. Parents will be provided with a written report of their child's performance on the assessments administered. Criteria for participation: Families in which there is a person diagnosed with either TS or OCD (could be a parent or sibling) and a 3 to 5 year old child who does not have TS or OCD.

• Study 2 Family Study of TS, OCD and ADHD
  The goal of this study is to explore the familial relationship between TS and ADHD, OCD, and related disorders. It is expected that this research will further our understanding of how these disorders are expressed, and promote the identity of susceptibility genes. Participation in this study involves a one-time visit at your home. All family members participate in the interviews and assessments. All the investigations are naturalistic; participants are free to commence or continue any treatments during their involvement in the studies. Criteria for participation in this study: Families with a person who has either TS or TS and ADHD, or just ADHD or families in which two siblings have OCD.

• Study 3 TS Genetic Linkage Study
  This study is being conducted in collaboration with an international consortium of researchers seeking to clarify the role of genes in the occurrence of TS within families. The goal of this investigation is to extend previous findings that identified two specific areas on human genes that may determine the likelihood of developing TS. Criteria for participation in the study: Families in which two siblings have TS. For more information call 1-800-471-2730 or e-mail ktsatsanis@partners.org or cillmann@partners.org. Website info: massgeneral.org/allpsych/upng.

National Conference Reports

By Roseanne Torgerson, chapter co-chair

I am writing this article aboard the A319 bringing Brad Hawkins and me home following a five-night stay at the Alexandria Mark Center Hilton. Following this morning's final breakfast and closing good-bye session for the 2002 TSA National Conference, we spent much of today as tourists in the "other Washington." We checked out of the hotel and visited one of the Smithsonian museums and several of the national monuments with conference friends. The weather was beautiful, the "other Washingtonians" were helpful to tourists, and souvenirs for family and friends back home were a bargain (3 T-shirts for $10!). Several people were flying huge kites in the shadow of the Washington Monument. We wished we'd packed a kite of our own! Today was truly a wonderful way for us to end our very busy stay at the hotel. On October 30th, both of us attended Presidents' Training (Brad sat in for our Chapter Co-ChairBernadette Witty). This was a very busy and productive day of connecting, sharing, and brainstorming with presidents and co-chairs from TSA chapters across the country. October 31st was Leadership Training for an expanded group. Some of the chapter presidents were joined by other board members, support group leaders, or special project coordinators from their chapters. The day's opening event was a combined plenary session with those attending the pre-conference Newly Diagnosed Seminar. Gerald Erenberg, MD, Past Chair TSA Medical Advisory Board, presented a captivating overview of TS+ pharmacology from the beginnings to soon-to-be-available new medications. With only the two of us to represent the leadership for our chapter, we had jointly decided ahead which of the leadership "presentation" and "session" offerings best fit our chapter's needs and priorities and divided up to attend them. Brad participated in the pre-lunch session entitled "Addressing the Needs of Adult & Young Adult Members" presented by Don Donin of TSA NY City and Mary Jo Mettler, Chair of TSA Alaska. I attended the session entitled "Establishing a Local Educational In-Service Program" which was a very helpful how-to demonstration of the new PowerPoint version of the Educator's Curriculum by its author, Susan Conners.
Since we had not made all of the necessary pre-arrangements to make the "Trip to the Hill" to meet with our Senators and Representatives, we were each able to attend two of the leadership workshops. Brad attended "Public Relation Skills for Local Media Promotions" and "Grant Writing Made Easy;" I attended "Information & Referral Development of Local Resources" (watch our chapter website for information about new publications from national TSA's I&R department that can be downloaded) and "Chapter Advocacy Program." The TSA National Conference 2002 officially opened Thursday evening with a youth Halloween party and an International Meet & Greet Reception. Dr. Oliver Sacks gave the keynote address at Friday's sit-down breakfast. For both of us, this was the high point of the conference and our most looked-forward-to event. Dr. Sack's presentation was followed by simultaneous all-day symposia. Brad attended the "Medical Family Symposium;" I attended the "Education Symposium." Afternoon chat-room meetings allowed us to get Dr. Sacks' autograph on his books we had purchased for ourselves. The two of us decided to purchase two copies of the book Pepper Belle - about the horse with "equine Tourette Syndrome" (equine self-mutilation syndrome) - by Willie J. Ferrero for our chapter's lending library.
The day ended with "Jazz Night" with Michael Wolff (the movie The Tic Code was based on his childhood) and his band Impure Thoughts. The event featured the first-ever performance of the TS Song written by Michael Wolff for TSA.
On Saturday, both of us attended the Parent and Family Symposium to hear the presentation by Ross Greene, Ph.D. He is the Director of the Collaborative Problem-Solving Approach Institute of the Department of Psychiatry at Massachusetts General Hospital in Boston. He is also Associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School. He specializes in the treatment and study of explosive, noncompliant children and adolescents, and uses the terms "baskets A, B, and C" to represent the possible ways to address a potentially explosive situation. He is the author of the book The Explosive Child. A copy of his 16-page conference handout will be attached to our lending library copy of the book. After Dr. Greene's presentation, we visited the research study table in the exhibit hall and learned that someone else from our state had stopped by. This led to our connection with Kathy Tracey, a nurse at Providence Hospital in Seattle. Roseanne asked for her thoughts about the 2002 Conference for inclusion in this article. Kathy said the conference was "the first time I got to interact with other Tourette people. In the past, coprolalia would have annoyed me. Here, it was okay. As I've aged, I've been able to accept my Tourettes and I can better accept it in others because I can accept it in myself. My acceptance of my Tourettes is why I'm here. [Until now], I haven't been able to put myself into a group of people who are ticcing." Kathy hopes to find family members who are willing to participate in the sibling research project (see article on page 1). She wants to continue receiving notices about chapter social events like our picnic and would like our chapter to have more adult activities. Kathy, Brad, and Roseanne all recommend that you mark your calendars for the next National TSA Conference to be held April 23-25, 2004 in Alexandria, Virginia!

Notes From The Conference

By Brad Hawkins, board member

I had the good fortune of accompanying our chapter's co-chairperson, Roseanne Torgerson, to the TSA's national conference in Alexandria, Virginia. It was my second TSA national conference (I've also been to one TS Foundation of Canada conference).

The TSA produces impressive conferences, with many important and informative seminars, but for many people what takes place outside the conference rooms is as important as the conference itself. It's a chance to socialize with "their own kind" - with people who openly display the very traits that one might otherwise work to suppress.

Being in a hotel full of Touretters is almost like being in some foreign city where ticcing is merely a custom, the lobby like a crowded marketplace where people mill around chattering and ticcing away as part of normal routine. I got the impression that some people feel more at home there than they do at home.

It does take some adjustment, though. On the first day, more than once I found myself puzzled by someone's repetitive gestures, wondering what they were trying to "tell" me, or if they were even directing them at me, only to realize - with a bit of private embarrassment - that it was just another Touretter, merely "doing what comes naturally."Some Touretters expend a great deal of energy in their daily lives trying to "fit in." When you're one ticcing fish in a whole school of Touretters it can be downright hard to stand out. I've never been much of a conformist myself, so I haven't always expended much energy in suppressing tics. TS is a part of my identity and sometimes when it wanes I feel like I'm missing something. At the conference, surrounded by constant reminders, I ticced more than I have in years, and I loved every minute of it.

During some seminars, and sometimes in the hotel lobby, vocal tics that burst the air were met with instantaneous "tic responses," spawning rapid exchanges that seemed like some form of high speed communication or break-neck word association game.

People come to the conferences for serious issues, but the atmosphere was positive and friendly. The only time I saw people truly mournful was when we started saying our good-byes.

My favorite moment of the whole trip: since noticing a few interesting quirks, I'd been teasing our own chapter co-chair about having "ticless TS." On the flight home, she asked me if I had touched my cheek to the Washington Monument, as she had during our brief tour of the mall before our flight out. I replied to her, "No, I don't have that tic." She corrected me, "It's not a tic, I only did it once." I said, "I see. You've been suppressing it forever," to which she replied, exasperated, "No I HAVEN'T been suppressing it forever, I've been DOING it forever." If I'd had enough room to fall out of my seat, I surely would have.

Lending Library Additions

Materials from our lending library can be checked out for a two month period with a refundable deposit required. Contact our librarian Sue Bream at sue@getyourbearings.biz or (206) 283-0575.

New Board Member

IDEAS Conference

Spokane Walk-a-Thon

You've Got a Friend Project

Thank you...

The TSA and the Washington State Chapter do not endorse products, services or manufacturers. Such names appear only as information for our members. TSA assumes no liability whatsoever for information about or the use of any product or service mentioned.

NEWS YOU CAN USE

In 1998, the Food and Drug Administration initiated a rule that drug companies test some of their products among children. This had generally been accepted by the pharmaceutical industry which has steadily increased the number of drugs tested for children. Public health advocates considered this rule a major success in helping improve medical care for children. Several groups, including the Competitive Enterprise Institute and the Association of American Physicians and Surgeons sued to overturn the rule arguing that it overstepped the FDA's authority by opening the door to greater oversight of "off label" uses of drugs, which is widespread. In October, a federal judge agreed and struck down the rule. Louis Cooper, president of the American Academy of Pediatrics called the ruling "a terrible blow." "This court decision returns children to the status of a 'therapeutic afterthought' by the pharmaceutical industry. While adults will be ensured that drugs on the market are safe and effective for their use, children will not be afforded the same assurances."

Condensed from The Seattle Times, 10/29/02.

Writers Wanted

Adults who have grown up with disabilities and/or health care needs are invited to write short essays for parents of children with disabilities and/or health care needs for a new book entitled A Different Journey: Personal Stories for Parents by Adults with Disabilities that Stan Klein and John Kemp are co-editing. In their essays, authors are asked to write an essay that they wish their own parents had read or been told while they were growing up. Authors of essays accepted for inclusion in the book will receive $125 for the right to include their essay. Specific guidelines for essays include: 1) An essay of about 1500 words, or less. Add a biography of about 150 words, or less, that would follow the essay in the book. At the end of the essay, write your mailing address, telephone number, fax number, and email. 2) Submit your essay as an attachment in Microsoft Word to an email or paste your essay into the body of your email. Send email to stan@disabilitiesbooks.com. 3) If essay is submitted by regular mail, double space the text. Submit the essay on a disk as well. Label each page of your printed essay and the disk with your name and address. Send the printed copy and disk to: Stanley D. Klein, Ph.D., DisABILITIESBOOKS, Inc., PO Box 470715, Brookline, MA 02447-0715. Deadline: All essays are to be received by February 15, 2003.

Preparing for College

Straight Talk About Psychiatric Medications for Kids

Web Site for Kids

ADULT ISSUES

by B. Duncan McKinlay, Ph.D.

Editor's Note: Duncan McKinlay has written a series of articles regarding living as an adult with TS. Here is number 16 in his series.

I mentioned last time a situation where an employer sat me down to have a frank discussion about my TSÖ. yet rather than being upset I snatched at the opportunity. While I myself may be confident that, once I'm through the threshold, I'll be able to demonstrate my value as a member of his/her staff, the trick is to find someone who won't presume whether I should even be offered the door.
Having now established myself well "on the other side," a lot of good stuff has stemmed from the many fortunate relationships I've subsequently developed. Over the next couple of installments I want to share with you what I've learned so far:

We might as well "begin at the beginning," and talk about pointers suggested to me for what to do in an initial job interview -

• Start by broaching the topic yourself: inevitably there comes a point in that first meeting where you are invited to ask any questions you may have. Say something like, "I would like to discuss my Tourette Syndrome and how it might influence my work here." If you are applying for a position for which an application precedes the interview stage, you may choose to not mention the fact that you have Tourette Syndrome until you are physically sitting in front of the hiring body both my training and my experience tells me that people are more likely to succumb to preconceived notions (and toss your application aside) when there is no contrary evidence TO those preconceptions (when you are not in the room to demonstrate your obvious competence and to defend yourself). When applying for clinical internships, I did disclose in my applications that I had Tourette Syndrome given that my entire curriculum vitae (academic resume) burgeoned with TS involvement, research, presentations, and clinical work it seemed sensible. Of course, out of 12 carefully crafted (and strong) applications only 3 sites even bothered to interview me, never mind rank me.
• Another valuable tidbit imparted to me: think about what the job you are applying for entails and what therefore would be the SPECIFIC areas of concern your employer would have regarding the TS. Perhaps the mistake I made in my clinical applications is that I was too general. I wrote "Concerning my diagnosis with Tourette Syndrome, I recognize that you would be remiss in your duties to uphold the caliber of your institution if you did NOT question the impact my disorder might have on my successful tenure as an intern. In this spirit I very much encourage you to approach me with any concerns you may have." I then wrote a bit about how the disinhibited energy that TS provides helps rather than hinders me, but what I failed to do is get concrete. For example, my plans were to work with youth not just youth, but youth who have been traumatized and/or have their own disinhibition problems to deal with. HOW DO CHILDREN REACT TO ME? I never said. Months into my rotations now, my advisors and colleagues see that I easily establish strong rapports with kids: a Speech and Language Pathologist told me just yesterday that this is a testament to how comfortable I am with my symptoms. Yet by not explicitly speaking to this issue in my initial applications, maybe I got put aside by more internship sites than I should have. Another example is the ability to suppress, at least partially, in situations where doing so is appropriate. PEOPLE DON'T KNOW WE CAN DO THAT!! My co-workers are astonished that not only does it "go away" when I'm deeply involved in something, but I can resist "scratching the itch" for short periods of time when necessary. It never even occurred to me to mention suppression, yet my current employer tells me this information is vital, and urges me to inform future employers of this.

Ok, so maybe we'll take THREE installments to cover all of this. Until next time, my friends!

Visit "Life's A Twitch!" at http://www.Lifesatwitch.com

Copyright March, 2002. Reprinted with permission.

LEGISLATIVE UPDATE

"In Houston this week they had an auction for Enron. They sold all kinds of things that were once property of Enron. Lots of good deals - in fact I picked up 2 senators and a congressman. Heck of a deal." - Jay Leno

I guess a lot of us feel this way about our political process at times. But we really can have some impact upon the decisions of our elected officials if enough of us take the time to contact them and let them know our views on issues which are important to us. Just the fact that so few people do write or call their Representatives makes your voice that much stronger when you do. I must admit that most of the time all I get back from them is a form letter thanking me for my input. But each letter or call that you make will literally be counted, tallied and considered by your Representative. And if they see enough of their constituents taking time to voice their opinion on an issue, they will listen. That is how we can influence our government officials even if we don't have the big bucks to buy their attention.
At the time of this writing, some of the election results at the state level are still undecided. The Democrats appear to be holding a slight lead in the House of Representatives, and the Republicans a slight lead in the State Senate. Voters have also turned down any statewide tax increases and so made it clear that they expect the state to cut back on many state financed services. At the national level, after the 2002 elections we are in a situation where the same political party has control of the House of Representatives, the Senate, and the Presidency. Still, partisan voices to the contrary, if you look at the election results closely you will see that no political party really has anything resembling a mandate. At both the national level and the state level the voters are divided nearly 50/50. And many of the individual elections were won by as little as one or two percentage points. Common sense tells me that this means that our Representatives cannot afford to ignore anybody who shows interest in any issue, regardless of political party. And there are several issues which may have a dramatic impact upon the lives of those with Tourette Syndrome.

NATIONAL

REAUTHORIZATION OF IDEA

STATE

To leave a message for your State Representative you can call the legislative hotline at: 1-800-562-6000. If you don't know who the representative in Olympia is for your district, it is easy to find out if you have internet access. Just go to: http://dfind.Leg.Wa.gov/dfinder.Cfm and input your address. You will get information on who they are and how to contact them. If you do not have internet access, look in the blue (government) pages of your local phone book under County Government. The County Auditor's office or the Election and Voter Registration Division will be able to find this information for you.
For Information on your U.S. Congressperson, you can go to: http://clerk.House.gov/members/index.Php.Information for your U.S. Senator can be found at: http://www.Senate.gov/index.htm.

The Blue pages of your local phone book will also have the name and phone number of the U.S. Representative for your district in the Federal Government section under the heading "Congress."

To contact President Bush:

Comments: 202-456-1111, 202-456-6213 (TTY/TDDY)
Switchboard: 202-456-1414
FAX: 202-456-2461

The White House 1600 Pennsylvania Avenue NW
Washington, DC 20500

UPCOMING CONFERENCES

AD/HD Conference

Managing ADD in the Classroom

Master Class for AD/HD Clinicians

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