CONNECTIONS

HBO Documentary on TS a Success!

The documentary, directed and produced by Ellen Goosenberg Kent (the Emmy®-winning HBO specials "How Do You Spell God?" and "Happy to Be Nappy and Other Stories of Me"), demystified and personalized what it's like to have Tourette Syndrome by giving voice to children ages eight to 13 who have the disorder.

Prior to its release, the following media included reference to the documentary and/or TS: nationally syndicated Scripps Howard News Service article by Partrick Bourland entitled "Tourette's is Still Largely Misunderstood" (published September 23 in the Seattle Post-Intelligencer), an article by Margie Bourle in The Oregonian (published November 6th), Oprah Winfrey television show (November 8), Paula Zahn NOW television show (November 11), Mothering magazine (November 10th), CBS Early Show (November 11), and Oregon Post Adoption Resource Network website.

The film features TS youngsters going about their daily lives, doing all the things regular kids do. It shows that some may have problems with impulse control, e.g., tantrums, verbal outbursts, or obsessive, unusual behaviors. The children speak frankly about living with Tourette. While freely describing the wide range of physical tics and obsessive-compulsive behaviors that characterize the disorder, the children also reveal the most debilitating effect: its emotional impact. Too often these children are subjected to the painful ridicule and scorn of their peers, or even adults. The film shows how these children triumph over such obstacles and prevent TS from "having" them.

The documentary "is an invaluable tool for educators, physicians, nurses, social workers and other professionals in promoting increased awareness and compassion for persons with TS," says Bernadette Witty, President of the Washington and Oregon Chapter of TSA. "The courage of the children in this video makes me smile. These children show just how similar everyone truly is."

"I Have Tourette's, but Tourette's Doesn't Have Me," can be purchased on-line by visiting the national TSA website at www.tsa-usa.org or by calling the TSA national office at (718) 224-2999. Schools, mental health centers and other organizations may benefit by adding a copy of this documentary to their resource library.

Persons in Washington or Oregon who would like to arrange for a presentation about TS, or a presentation in conjunction with this documentary, please telephone (206) 621-2108.

CHAPTER NEWS

CALL FOR VOLUNTEERS!

YADA Days:
We need volunteers to help run the Tourette Syndrome booth at Youth Awareness of Disability Assemblies (YADA) events. YADA is an educational program that involves creating awareness of a wide variety of disabilities, including Tourette Syndrome, among children in elementary schools. Most of the schools so far have been in the Seattle and surrounding areas. Our TS booth aims at helping children understand the symptoms and effects of Tourette Syndrome through a short, interactive talk followed by a fun "Pick-a-Tic" relay game. The kids love the game and learn a lot, so it's actually quite a fun way to spend the day. Volunteers can work for all or part of the two-day event. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com

Support Group Facilitator:
Right now the only active support group we have is in Portland. We desperately need help to start and maintain groups in Seattle and throughout Washington and Oregon. Please consider helping to start a group in your local area. You will get the help you need to get the group organized and you will be able to access a wealth of TS resources from our chapter and through the National TSA including literature, videos, etc. for your meetings. To make it easier, perhaps team up with another parent to lighten the work load.

Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com

Fund Raiser:
Help plan and implement projects that will raise money to support our chapter's services. We have plenty of ideas for ways to raise money - we just need someone to organize them! You can offer to do just a one-time fundraising event or take on the role for a longer period. Any money we raise helps, so even small projects can be a good place to start. With our connections to all the other TS chapters across the country, it's quite possible that another state has run your fundraising idea, and if so, they would be a great source for information. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com

Social Events:
We are hearing from a lot of people who just want to connect with other TS families. If you would like to organize even a simple, social no-host event, contact Jaime Biava at jbiava@u.washington.edu

School Advocate:
Be willing to help out parents in IEP meetings or help educate the educators by doing in-service meetings. We would ensure that you get the appropriate required training and you would have direct support from our two certified school advocates in Seattle and Portland. Contact Cori Hartje at corih@microsoft.com

Youth Activities:
Help plan some activities for TS kids in your local area. You would be supported by board member Jaime Biava who has experience working with kids with TS. Contact Jaime Biava at jbiava@u.washington.edu

Publicity:
Help promote our chapter and our services through public relations and marketing. This work would include writing press releases, contacting the media and maintaining networks with other organizations affiliated or related to the Tourette Syndrome community. A great opportunity for someone in the Public Relations field. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com

Research Opportunity with Adolescents!

For details, please contact Brady Wilbanks (Project Coordinator) at (206) 543-9932, or toll-free at (800) 283-5827 to learn more.

Board Member Erin Farrar contacted The Oregonian about publicizing the showing of the movie, "I Have Tourette's, but Tourette's Doesn't Have Me." This contact inspired human interest columnist, Margie Boule to write an article about Erin and her son Jesse Sirkin. It is reprinted here.

VOICES The Oregonian, Sunday, November 6, 2005

All day long, in school, alone in his room, on the playground with classmates, Jesse twitches and huffs, blinks and utters sounds or words. Sometimes he bellows an operatic "Figaro, Figaro!"

His movements and outbursts are involuntary and compulsive. Jesse does not twitch because he is nervous, although people's reactions to him can cause him stress.

He twitches and tics because he has Tourette's syndrome. "I was born with it," Jesse tells kids who ask or complain about his unusual behavior. "I can't help it." Sometimes they believe him.

For a condition identified and named more than a century ago, Tourette's syndrome is still poorly understood in the medical profession and in the public.

Many people with T.S. never are diagnosed or are diagnosed decades after symptoms appear in childhood. There is no cure. Researchers have identified a genetic component to the syndrome, but environmental factors may play a part, too.

And only about 10 percent of "Touretters," as they call themselves, have the symptom that comes to mind when most people hear the word Tourette's -- outbursts of profanity.

Chances are, there's a kid in every school in America with Tourette's syndrome. Lots of those kids are just thought of as bad, disturbed or poorly parented.

That's why Jesse and his mom, Erin Farrar, are willing to share their story. "It is such a misunderstood syndrome," Erin says. "I believe in telling everybody about it. . . . Lots of people think we should keep it a secret. I don't."

Being the parent of a child with T.S., Erin says, "is all-consuming, partially because I don't want it to be all-consuming for him. I try to be the shock absorber." She does research when Jesse develops a new tic. She reassures him he's a valuable, talented boy. She shares information with his teachers. "I try to be the buffer zone," she says. "It's hard on me." It's also hard on Jesse's younger sister, Zoe Sirkin, and his dad, Sam Sirkin.

But Jesse's the one who works hardest of all. Here's what it's like to be a 10-year-old Portland boy who has Tourette's syndrome:

"It feels real weird having people looking at you in a way that makes you feel bad," Jesse says. Jesse talks fast and thinks fast. "It makes me feel like I'm left out, like nobody likes me, like I'm weird."

Sometimes Jesse tries to control his tics in "important places, like at school in the process of a test. I try to hold it in so bad, I'm thinking more about that than my work. So it's hard on me." It's hard on the kids around him, too, he knows. "I don't want to distract them."

When kids ask him to be still, "I say, 'Come on, people. I can't.' "

Have you ever had to cough in the middle of a concert? You try desperately to suppress it; while you do, you're barely aware of what's happening on stage. When you finally get to the lobby, you cough and cough and cough.

Tourette tics are like that.

Some directly interfere with Jesse's learning. "I shut my eyes now and again, real tight, for about three seconds. That makes it hard to copy or read stuff."

It's common for people with T.S. to have associated disorders such as obsessive-compulsive disorder, attention-deficit problems or learning disabilities. Jesse has struggled with those. He takes medication that helps him focus. "Otherwise I'd be listening to stuff outside" the classroom, Jesse says.

But hiding behind Jesse's tics and learning challenges is a very, very good brain.

"We took him for an educational assessment," Erin says. "The guy was quick to say, 'This kid is so smart no one will be able to keep up with him.' But up until 18 months ago, he could not read." After Jesse started working with learning coach Marydee Sklar, Erin says, "He went from lower first grade-level reading to upper sixth grade-level reading in a year. It's like the rest of him is trying to catch up with his brain."

Today, Jesse says, rapidly, "I love to read. I'm crazy about it. I like history novels, books about military stuff, the Oregon Trail, expeditions. I love ancient stuff." He says he wants to be a "historologist" -- his word for a combination of historian and anthropologist.

You can talk about symptoms and test scores and syndromes, but when you meet Jesse in person, there's no denying he's an extremely likable kid. He's curious. He gets excited. He's affectionate.

And he insists there are good things about having Tourette's syndrome. "I don't want to not have it," he says. "I'm not trying to brag. But I think I have more ideas than other kids. I invent stuff in my head. Like right now, while I'm talking to you, I'm inventing things. It's easy. In third grade we made bridges and tested to see which could hold the most weight. Mine held 56 pounds. Repeating: 56 pounds." His bridge, with double trusses top, bottom and on the sides, won the prize.

"I also invented a submarine that uses human power, but doesn't need that much effort. And a repeating rifle that's not a muzzle loader."

"I think of Jesse, and I think of courage," Marydee says. She and Jesse have moved from reading to the challenges of math. "These kids are often labeled lazy or difficult, but they're working so hard. It's amazing what Jesse has to do to learn. He's doing a whole bunch of stuff that you and I don't have to do."

But the things Jesse can do also are amazing. Marydee emphasizes Jesse's strengths, "because the universe focuses on what you can't do, so often."

"He takes all that energy and impulsivity and turns it into creativity," Erin says. "He builds things. He thinks of things we can't think of. He has an incredible brain; it's just a matter of giving it some structure and shape so he can live in our society."

If everybody watched the documentary ("I Have Tourette's but Tourette's Doesn't Have Me") maybe life would be easier for Jesse. Maybe the kids at school wouldn't move away from him when he has tics. "I wish they knew they're not going to catch it," he says. "I feel like sometimes they think that."

Jesse may someday grow out of his syndrome; most kids with Tourette's see their symptoms disappear or lessen when they become adults. Until then, Jesse wishes his classmates would stop the name-calling. "Some people call me a jerk because I have Tourette's syndrome. And I'm not a jerk. I am not a jerk."

Margie Boule: marboule@aol.com; (503) 221-8450.

©2005 The Oregonian

On November 12, HBO aired a documentary about children with Tourette's syndrome called "I Have Tourette's but Tourette's Doesn't Have Me." It tells the story of life with TS through the voices of children just like Jesse.

TSA Chapter Co-Sponsors ADHD Conference for Parents and Professionals

ADD Resources, a national membership organization, based in Tacoma, Washington, hosted a conference for parents of children and youth with ADHD. This conference was held on March 4th and 5th in Tukwila, Washington. The conference was also open to young adults (age 15 and up) with ADHD, teachers, and for professionals working with clients/patients with ADHD. There were over 300 attendees, including several board members from our TSA chapter.

Conference co-sponsors included the Tourette Syndrome Association (TSA) - Washington and Oregon, the Washington State Division of Alcohol and Substance Abuse, Learning Disabilities Association (LDA) of Washington, Washington PAVE, CHADD Washington, and the National Alliance on Mental Illness (NAMI) of Seattle and NAMI of South King County.

Says Bernadette Witty, President of the TSA - Washington and Oregon, "When so many persons with TS have ADHD, our chapter was excited to partner with ADD Resources and other organizations on an ADHD conference for parents and professionals. This is the first conference our chapter has co-sponsored specifically on ADHD."

Dr Samuel Zinner, medical advisor to our TS chapter's board, was a conference presenter.

Erin Farrar, a member of the TSA - Washington and Oregon Board and parent of a youth with TS and ADHD from the Portland area, comments, "Since TS is a spectrum disorder most often including ADHD and OCD it is important for patient advocacy organizations to collaborate in educating patients and professionals about the whole range of related conditions. The Washington and Oregon Chapter was a proud co-sponsor of this important parent conference."

Parent to Parent + Kid to Kid + Adult to Adult

We'll need your name and address, email address and phone number plus the age of the person who has TS, their gender and their first name. Let us know what kind of contact you'd like. When we get a match we'll put you in touch and you can take it from there.

MEDICAL NEWS

Ask the Doctor

Possible Tourette Syndrome Gene Discovered - On Lucky Number 13

For the first time ever, a gene has been found that may be responsible for symptoms of Tourette syndrome in some people. This is an important discovery because it provides a clue about where, when, and how Tourette syndrome develops in the brain, and it gives researchers a guidepost for further investigations. Dr. Matthew State (a child psychiatrist and geneticist at Yale University) and his team have just published their research in the October 14, 2005 issue of the journal "Science" (one of the most respected academic science-based journals in the world). Dr. State's research has disclosed a gene that is probably associated with the symptoms of Tourette syndrome. While it's not certain that this gene causes changes in the brain that result in the symptoms, it does seem very likely.

To better understand the discovery, we need to know a little bit about genetics, and why this particular finding may be important. I'll then talk about what the researchers found and what's next for Tourette syndrome research. My explanation of genetics isn't the full picture, but for the purposes of this article, it's close enough to shed light on this new discovery.

"Genetics" refers to the field of science that looks at our genes. "Genes" are small strings of information composed of DNA that decide virtually everything about us, such as how quickly we develop, what we look like, whether we're skilled at mathematics or art, how good we are at paying attention to something uninteresting, many aspects of personality, etc. Every gene is connected like links in a chain to many other genes and, together, they form a very long string of information. This long string of connected genes is called a "chromosome". In human beings, every cell in our body has 23 pairs of these chromosomes (since they come in pairs, there are actually 46 chromosomes in every cell of our body). Every cell has the exact same set of 46 chromosomes as every other cell. Surprisingly, human beings don't have a huge number of genes (somewhere around 25,000 or so, we think).

How can the vast differences among the nearly six and one-half billion people in the world be explained by only 25,000 genes? This is complicated, but the number of genes isn't nearly as important as when the gene is working (or turned on) and the combination of which genes are working together at any given point in time. Genes sit there in every cell of our body, waiting to be enlisted to work. It is this function of being turned on, as well as the other genes working at the same time, that (in some part) accounts for the limitless possibilities of "gene expression".

We inherit half of our genes from our mother and half from our father. Almost all of the genes in human beings are the same from one person to the next, so we're really not very different from each other on a gene level. But some genes have minor variations that determine the color of our hair or skin, how tall we can grow, or how talented we can become at things like sports. Sometimes, these gene variations and gene combinations cause the brain to grow and develop in ways that make people respond with tics, or with compulsions, or with impulsive acts, and other behaviors that we observe in Tourette syndrome.

We've known that Tourette syndrome is usually caused by genes, and medical scientists have been working to try to find out which genes (or gene combinations) cause the behaviors of Tourette syndrome. One of the greatest struggles in understanding Tourette syndrome and related developmental problems has been in deciding exactly what Tourette syndrome is, and who has signs and symptoms that we might confidently say, "THIS is Tourette syndrome." Is Tourette syndrome tics? Is it tics and ADHD? Is it tics and OCD? Is it tics and sleeping problems? How about ADHD and sleeping problems and OCD but no tics? And how much impact does the "environment" have on causing the symptoms of Tourette syndrome (meaning the world of home, school, and planet in general, among other things)?

We depend on tics to diagnose someone as having Tourette syndrome. This is a bit misleading though, because many people without obvious tics probably also have the same gene variations as people diagnosed with Tourette syndrome, and they may also have other associated problems, like ADHD or obsessions and compulsions. They just don't seem to develop the tics. Also, there are probably many different genes and/or combinations of genes that can all cause similar symptoms seen in Tourette syndrome; in this case, there would be many different unrelated genetic disorders that, perhaps coincidentally, all cause what we currently observe as "Tourette syndrome". Finding the gene(s) will help us understand which areas of the brain are involved in causing symptoms, when in brain development the important changes occur (Fetus? Infant? Toddler? Other?), and clarify appropriate diagnoses (remembering that two people with seemingly identical symptoms that we observe may, in fact, have entirely different genetic disorders). With this genetic information, we may also find better customized treatment options, as well as, possibly, cures.

Now, on to the new and important discovery.

Past studies have found large segments of chromosomes (called "regions") that may contain a gene or genes that are responsible for the symptoms of Tourette syndrome. These regions contain many genes, most of which are unrelated to Tourette syndrome. But no one has ever narrowed down these regions to isolate a single gene.

The gene that Dr. State's team found is located on Chromosome #13 (remember, there are 23 pairs of chromosomes - this means that everybody has one pair of #13, one inherited from mom, and the other inherited from dad). The gene was discovered in a boy who has a known abnormality in one of his chromosomes #13. Because no one else in this boy's family has Tourette syndrome, it was reasoned that this chromosome abnormality may contain a gene or genes that caused his Tourette syndrome. Dr. State's team looked at the abnormal part of this chromosome, and found 3 genes in this chromosome region. After further investigation, Dr. State ruled out 2 of these 3 genes as possible suspects. Previous researchers had already learned that the third gene, when functioning normally, is important in determining how brain cells grow and connect to each other. Dr. State's team tested 174 other people with Tourette syndrome, and found that two of them also had important differences in this very gene. While 2 in 174 may, at first glance, seem underwhelming, in the world of genetics and Tourette syndrome, this finding is very significant. These two other people didn't have the precise same change as the boy had, but they did have changes nevertheless, so Dr. State knew that this gene was not working normally in these two people either, which is what is important; no matter what the change, the bottom line is that this gene was abnormal in these two people, just as it was abnormal in the boy with the chromosome #13 abnormality, and all three of them have Tourette syndrome.

To make certain that these changes weren't common in people without Tourette syndrome, Dr. State's team looked at this gene in 3,600 different people who do not have Tourette syndrome. Not one of these 3,600 had any abnormality in this gene, a finding that confirms Dr. State's conclusion that the abnormal gene he identified does relate to Tourette syndrome.

When this particular Chromosome #13 gene is functioning normally, it helps cause brain cells to grow properly in important areas of the brain. As it turns out, these are the same areas of the brain that are involved in Tourette syndrome.

In time, we will likely learn that this gene is important only in some people with Tourette syndrome. Most likely, other people with Tourette syndrome will have variations in completely different genes located on completely different chromosomes. But different genes may share similar roles in causing Tourette syndrome. In learning about this newly discovered gene and how it works, we are set to learn more about what areas of the brain are responsible for causing Tourette syndrome even among people with Tourette syndrome who don't have an abnormality in this chromosome #13 gene. So this is an important genetic breakthrough. The Tourette Syndrome Association is on top of this exciting finding and will be helping to fund more of Dr. State's work in this area.

(As always, we are very grateful to Dr. Zinner for providing theDoctor's Column. If you have a question about Tourette syndrome that you would like to ask Dr. Zinner, send us an email at tsawashingtonchapter@yahoo.com)

NEWS YOU CAN USE

Washington Patients Can Obtain Licensing Information about their Health Care Providers

By Todd Erik Henry

Persons with TS (Tourette Syndrome) often see a variety of physicians, especially after they are newly diagnosed. Have you ever wondered about the licensing history of your own treating physician? Or, have you ever wondered about the licensing history a physician, or other medical or behavioral health professional that you have been referred to? If you plan to receive treatment from a medical, dental or behavioral health professional in Washington, you can review some information about their licensing history on-line.

By visiting the Washington Department of Health home page, at www.doh.wa.gov, and then clicking on the menu called "Provider Credential Search," you may search a database of applicants and credential holders using either a person's name and credential type, or their credential number. For example, if you are looking for information about Dr. A, you would simply enter the physician's first and last name and credential type from a drop-down menu. Then select "Physicians and Surgeons" for any type of physician from primary care physician to psychiatrist or neurologist.

If you would like information about a psychologist, select "Psychologist." Persons holding licensure, certification or registration in Washington in 57 different health and health-related professions are available using this database.

At a minimum, the database provides you with the individual's credential number, credential type, last name, first name, middle initial, and date of birth. In the case of physicians, the database will also provide you with the person's first credential date, the last renewal date of the credential, and the credential expiration date. If no additional information is seen on the screen, the person had not had any credentialing issues with the regulatory authority that regulates the profession for which s/he holds a credential.

For physicians, there will be a section that says "Action Taken" and it will denote if no action has been taken or it will provide information about information taken by the regulatory authority for that profession. As of this writing, the Department's on-line database only contains credential information since July 1998. Hence, if action has been taken against a provider prior to that date, it will not be noted on the computerized database accessible to the general public.

The Department has a disclaimer on their website which states "The absence or presence of information in this system does not imply any recommendation, endorsement, or guarantee of competence of any health care professional, nor does the mere presence of such information imply a practitioner is not competence or qualified." Some other states have more information available on-line about health care providers than Washington, but this is a helpful start. Hence, if you are traveling to another state for specialty care services, such as to see a neurologist or psychiatrist who treats TS, make sure to look on-line or even telephone the disciplinary authority to learn more about the provider's disciplinary history.

Washington does not have malpractice information about a health care provider as part of the licensing history. Some states do make available some information about legal settlements or legal judgments against a provider. Such information may or may not be of value. Having worked in health profession regulation and having work as a health care administrator, I can tell you that most medical complaints between a physician and patient are settled out of court. A legal settlement in itself does not mean the provider did anything wrong; usually it is less costly to pay a settlement than to litigate a case. Further, just because there is a legal judgment against a provider does not mean the provider actually did anything wrong. That is, some lawsuits by patients are frivolous. Also, a health care provider may have lost a case in court, but did not actually commit or was not entirely responsible for the harm alleged in court.

In Washington State, a variety of health profession boards, commissions and committees work in partnership with Washington State Department of Health regulatory staff to develop a uniform process for receiving, investigating and determining appropriate discipline for health care providers.

Disciplinary action can only be taken by the Washington State Department of Health against health care providers who are required by law to be licensed, certified or registered with this agency.

In the case of patient or health professional complaints against a physician, the Medical Quality Assurance Commission (MQAC) is the disciplinary authority that may take action against a physician or surgeon's license. If you have concerns about a physician that has treated you, you may send a written complaint to the Medical Quality Assurance Commission, Washington State Department of Health, Health Professions Quality Assurance, P.O. Box 47865, Olympia WA 98504-7865.

Similarly, if you have a concern about a licensed psychologist, you may write to the Examining Board of Psychology using the same mailing address for the Department mentioned above.

Washington has among the most liberal public disclosure laws in the nation. That means that Washington State law allows members of the public to access copies of most public documents, such as internal memos and investigative files, if they submit a public disclosure request. Therefore, if you have serious complaint or concern about physician or other health care professional, you can request additional information about that person's disciplinary history beyond what is available on-line. While confidential information about other patients will be omitted from such files, this additional information may be a helpful source of information to patients or patient advocates in certain situations.

Please remember that if you hear about a case in the news, public agencies may not disclose all documents that relate to their current investigation of a health care provider.

Public disclosure requests are best put in writing to the Department of Health.

Being an informed health consumer is important - especially as a person with TS or a parent of a child or adolescent with TS. Stay informed.

Todd Erik Henry, JD, MPA, MA, MS, RC is Vice President and Legislative Liaison for TSA - Washington and Oregon. Mr. Henry has experience in public and private sector regulation and credentialing of health care professionals, including physicians, nurses, psychologists, counselors, and social workers. He may be contacted at (425) 350-3441.

TS Goes to Work: Requesting Informal Accommodations at Work

Everyone encounters stress at one point in time or another at work. Persons with Tourette Syndrome (TS) face one more set of challenges - whether or not to disclose their TS to their supervisor and/or co-workers.

Self-disclosure of TS is a personal decision that must be made carefully with knowledge of the potential consequences. You must weigh the pros and cons, or the benefits and costs of self-disclosure. Your unique circumstances weigh heavily in such a decision.

It is possible to request certain work place accommodations without disclosing a TS diagnosis. Informal accommodations can often be obtained without a supervisor or manager realizing they have made an informal accommodation. It is best not to refer to your request as an accommodation. Doing so can make a supervisor or manager nervous.

If an employee demonstrates a good work attitude and high motivation, a supervisor or manager may decide to make reasonable efforts to accommodate requests or challenges of employees without disclosure of a disability. It is important to remember that how often such requests are honored is largely influenced by the organizational culture and management style of the supervisor.

Let's look at the case of Vicki, a hypothetical 27-year old female accountant. Vicki works in an open office with seven other staff members. Vicki has TS, OCD (Obsessive Compulsive Disorder) and ADHD (Attention Deficit Hyperactivity Disorder). Vicki has mild facial tics and a few verbal tics that occur sporadically during the day. At certain times of the day, the office becomes crowded with staff from other parts of the building who meet with the staff who work in the same office as Vicki. Sometimes, there can be 15 people in the one room.

With so many people in the room, Vicki can feel self-conscious about her tics and becomes anxious. Her tics worsen. Vicki finds it increasingly difficult to focus upon successfully complete certain work tasks when she tries to mask her tics. This becomes especially distracting for her when she needs to complete monthly financial reports during the last week of the month.

Vicki's supervisor and co-workers probably are aware that she has some tics. If Vicki's supervisor seems approachable, Vicki might want to tell her boss that she finds the open office a bit distracting when she completes certain important, demanding tasks - like the month end reports. Vicki could ask her supervisor if she could use a conference room or someone's office for a few hours during the last week or the month when she focuses upon finalizing the monthly financial reports.

In the scenario above, the informal request for a workplace accommodation occurred without any disclosure of TS.

Now, let's look at Fred's situation. Fred is a 43-year-old college administrator with TS. Fred attends many meetings as part of his job. Fred has several loud vocal tics which can be very disruptive at meetings. Some meetings he attends really serve no real purpose. Fred is expected to attend because that is the way it has always been for the person holding his position.

Fred approaches his supervisor, saying that he values attending the college's various committee meetings but that he feels he could be a more productive employee if he could reduce commitment by two or three standing committees. Fred identifies various assignments he has received - also pet projects of his supervisor - that he could focus upon instead of attending these two or three standing committee meetings. Fred's supervisor, after some consideration, decides to reassign someone else to attend the meetings and free up Fred's time.

Here, too, an informal workplace accommodation was requested without disclosure of a TS diagnosis.

There are many other scenarios where a person with TS does not need to disclose his diagnosis when attempting to obtain reasonable accommodations. Even if you have already disclosed that you have TS, you don't necessarily want to say because you have TS you need another accommodation. People request accommodations at work each and every day for all sorts of reasons. There is no reason why a person with TS can't also ask for and receive reasonable workplace accommodations too.

Todd Erik Henry, JD, MPA, MA, MS, RC, is a member of the board and has experience in labor - management relations and various work-place issues.

Michelle R. Henry, RN, BSN, BS, is a nurse manager and former behavioral health nurse. Ms. Henry has worked with adults, adolescents and children with TS, AD/HD, OCD and other behavioral challenges. Ms. Henry works in Snohomish County.

TS Goes to Work: Tips for Selecting a Career

People with TS often wonder what career path is best for them. This is a decision based upon many personal factors. Some tips can be helpful:

• Select a career path that makes you happy and meets your career goals!
• Apply for employment positions where your passion for the work shines - and makes your TS symptoms virtually irrelevant to the employer, co-workers and customers!
• Apply for employment positions where you feel comfortable, positive and confident in being yourself - regardless of what others think!
• Apply for employment positions where you can show your knowledge, skills and abilities - and makes your TS symptoms virtually irrelevant to the employer, co-workers and customers!
• Apply for positions that allow you the ability to have variety during the workday! Many persons with TS also have AD/HD and therefore need the ability to move between several types of tasks.
• Apply for positions that allow you to really focus your attention at times! Many persons with TS enjoy intense focus upon a subject or task as a relief from their TS and because many persons with TS have OCD.

Book Review: I'm Fidgeting to Stay Focused!

Since AD/HD is a common co-morbidity with Tourette Syndrome (TS), it only seems appropriate to discuss a new resource for managing Attention Deficit/Hyperactivity Disorder (AD/HD).

Every so often there comes a psychology or self-help book that really stands out for persons with TS or AD/HD, patient advocates, and professionals. "Fidget to Focus" (2005) by Roland Rotz, Ph.D. and Sarah D. Wright, M.S., A.C.T., is one of those books.

"Fidget to Focus," published by iUniverse of Lincoln, Nebraska, is a fast, 126- page read. Rotz and Wright provide a brief, concise, and theoretically solid background along with current views about AD/HD and human senses. Then the authors jump in, head-first, to address the conflict between "interest" and "boredom" in activities among persons with AD/HD. Rotz and Wright introduce "arousal strategies" for managing AD/HD. It is in the "arousal strategies" section that the reader is introduced to the idea that an AD/HD can "fidget to focus."

Rotz and Wright discuss methods of "respectful, effective fidgeting" that can be used at school, at work, and at home. In reality, the various "fidget" strategies discussed in the book have been self-discovered by various persons with AD/HD over time. "Fidget" strategies have also been observed by parents, spouses, and friends of persons with AD/HD.

The real value of this book lies in its providing a coherent, rationale, and articulate discussion of fidgeting as a practical life strategy for living with AD/HD. Rotz and Wright unify the fragmented information that persons with AD/HD have learned individually about themselves and assemble this wonderful book on "fidget" strategy. Of particular value to most readers will be a section of the appendix which serves as a menu (or workbook) of "fidget" strategies.

"Fidget to Focus" will be extremely helpful to parents of AD/HD youth, therapists and counselors who work with AD/HD youth, and teachers with AD/HD students. Additionally, adults with AD/HD who struggle to sit still or remain focused during meetings at work will greatly benefit from reading this book and using it as a resource. This will be a resource you will want to keep handy - and it will likely become dog-eared from frequent use.

This book may be ordered from the publisher at www.iuniverse.com.

Todd Erik Henry, JD, MPA, MA, MS, RC is Vice President and Legislative Liaison for TSA - Washington and Oregon. Mr. Henry is also Vice President of ADD Resources, a national membership organization, based in Tacoma, Washington.

Return to TSA - Washington State Chapter Home Page