CONNECTIONS

I.D.E.A.S. Conference

The conference will be held at the Spokane City Center DoubleTree Hotel on January 31 and February 1. Besides Jackie's presentation, we are also sponsoring an informational booth. We need volunteers to sit at this booth, handing out informational brochures and answering questions about TS. Last year's volunteers all felt it was a very positive experience. If you're interested in volunteering, please contact Nanette Rosenthal at (206) 367-4491 or TSAWASH@aol.com. This is a great opportunity for our chapter members in the Spokane area to get involved. If you are interested in attending the conference, contact Karen Domini at Educational Service District 101, (509) 456-7086.

Welcome to Our New Board Member

We're so pleased to have our newest board members, Adam and Bernadette Witty with us. They are both great assets. We would welcome even more new members. Please consider whether you would be willing to make this kind of commitment to the chapter. The rewards are definitely worth it!

Bowl-a-Thon Helps Raise Money

We did not reach our goal of $2000 this year in donations. We still have about $500 to go. This is our only fund raiser of the year, and the money we raise here helps go toward putting on our upcoming medical conference (see article above), bringing in a speaker from national TSA to present at the IDEAS conference (also see article above), printing and mailing this newsletter, purchasing informational materials from TSA to send to chapter members requesting help, and more. If we don't have the money to spend, projects get cut. It's not too late to make a direct donation to our chapter. Your check will enable us to continue moving forward as a chapter, and helping raise the awareness of TS in our state. Checks can be made out to TSA-WA and sent to 11316 20th Ave. NE, Seattle WA 98125.

Another way of contributing to our chapter is by becoming a member of national TSA. A portion of your annual dues is returned to the state chapter for us to use locally. If you haven't become a member, or if your membership is up for renewal, please contact national today at tourette@ix.netcom.com

Thanks to all who made the bowl-a-thon a success this year...

Individual Donors:

In the News

NEWS YOU CAN USE

• Show important it is for the child to receive government aid
• Whether to set up a special-needs trust or simply bequeath money or assets if the child does not need public assistance
• Who will act as trustee
• Whether the trust will be activated immediately or upon the parent's death
• Whom to rely on to draft the trust
• Whether to include a letter of intent explaining the parents' wishes for use of the assets

Taken from Seattle Times article 7/2/01.

Hiring Workers with Disabilities
A new federal website, www.disAbility.gov, has been created with information on recruiting and hiring workers with disabilities, as well as tips on how to provide low-cost accommodations for these employees. The site also offers information for the disabled themselves on housing, education, transportation, health, recreation and employment.

Free or Low-cost Health Insurance for Children
In Washington State, free health insurance is available through Medicaid, and low-cost insurance is available through the CHIP program. A family of four making $2,942 monthly would qualify for Medicaid. If they make between $2,493 and $3,678 a month, they would qualify for the CHIP program. Call 1-877-KIDS-NOW for more information.

MEDICAL NEWS

Use of Nicotine Patches in Children with TS
A report was published in the September issue, vol. 62 of the Journal of Clinical Psychiatry reporting that the nicotine patch can help boost the effectiveness of the drug haloperidol (Haldol) when used to treat the symptoms of TS in children and adolescents. Researchers gave Haldol and a daily 7 mg nictotine patch to 35 patients ranging in age from 8 to 18. Another 35 were given the Haldol but no patch. They found that the frequency and severity of tics declined for those who had the patch, even when the Haldol dosage was cut in half. The patients who received no patch experienced an increase in symptoms including tics, agitation and depression. Most patients experienced side effects from the nicotine patch including nausea, vomiting, itching and headache.The chair of TSA's medical advisory board, Dr. Gerald Erenberg, called the study's results "noticeable but not striking." He believes the study provides a basis for further research into chemically-created nicotinic compounds which are safer and more effective than nicotine.
The chair of TSA's Scientific Advisory Board, Dr. Neal Swerdlow, called the study "an important area of research." He added that until the study's findings are replicated and undergo an in depth examination, it would be unwise to raise hopes prematurely among people with TS.

Research Study of TS Siblings
You might want to participate in the following study of the psychosocial characteristics of young siblings of boys with TS being directed by Nancy Fredine of the Yale Child Study Center.

PSYCHOSOCIAL CHARACTERISTICS OF YOUNG SIBLINGS OF BOYS WITH TOURETTE SYNDROME*

This study is focused on learning more about the younger brothers and sisters of children with TS -- how they cope, their level of empathy compared to other kids of their age, and generally their feelings and concerns about having a brother with TS. The results of this investigation may prove important for families with TS, and for their clinicians. The more we understand about families with TS, the better we will be able to help them. The results of this study will be shared with all of the participants.

Note: Once completed, all forms can be returned by mail to the investigator. Also, any necessary interviews can be conducted on the telephone.

Eligibility Criteria for Participating Families:

• Four or fewer children,
• The oldest child is a male with a primary diagnosis of TS. While the child may also have diagnoses of ADHD and/or OCD, TS must be the primary diagnosis. In addition, the child should be free of all other major problems.
• The next oldest child can be male or female, be between the ages of 9 and 15, but be no more than 4 years younger than the oldest child. This child should be free of tics, obsessions and compulsions, or other major problems (ADHD is ok).

• Once recruited, the parents would be asked to fill out forms about themselves. The mother will also be asked to fill out additional forms about each of the two enrolled children.
• The boy with TS will complete one form, and the younger sibling will complete a set of forms. All of the forms can be done through the mail.
• Lastly, there will be a brief telephone interview with the mother about the younger sibling;
• Each family will receive a small token of appreciation upon completion of the study (a $10 Blockbuster gift card, Walmart giftcard, or similar item).

Nancy Fredine**
230 S. Frontage Rd., P.O. Box 207900
Yale Child Study Center,
New Haven, CT 06520-7900

(203) 676-8461 or (203) 269-2359
E-mail: nancyfredine@hotmail.com

**Nancy Fredine has been a Research Associate at the Yale Child Study Center for the past six years working with Dr. David Pauls, Ph.D., Professor of Psychiatric and Neurobehavioral Genetics, on a study of preschool aged children at risk for TS and OCD. She is working on her doctorate at the University of Maryland, and this research study is one of the requirements for that degree.

Tourette Syndrome - A Somatosensory Condition

by Diane Findley, Ph.D., Yale Child Study Center, TS/OCD Specialty Clinic

Tourette Syndrome can be viewed as a somatosensory disorder characterized by a heightened sensitivity to both internal and external stimuli, with accompanying irresistible urges to respond to those stimuli. It is thought that sensitivity to the internal and external environment is something all of us have and experience from time to time but that people with TS are much more attuned to these stimuli. Additionally, they have much more difficulty "ignoring' or not responding to them. There seems to be a failure of inhibitory control over these responses, such that the urge to respond to the stimulus is overwhelming. This basic disinhibition is different from impulsivity in that impulsivity involves acting without thinking about the possible consequences of the action whereas disinhibition is the inability to inhibit behaviors even while knowing the consequences.
As stated, people with TS seem to be more attuned to both internal and external sensations. Internal stimuli include generalized sensations that are not specific to any particular part of the body and are experienced as feelings of "inner tension" which can often be relieved at least temporarily by moving around. Additionally, premonitory sensory urges can be more specific to certain areas. In particular, these sensations often occur prior to tics and can feel similar to the urge to sneeze or scratch an itch. The need to make the movement or sound is sensed as irresistible and, as with itches and sneezes, after the tic, there is a brief feeling of relief. Children younger than age 10 usually do not describe sensory urges and to them their tics might seem more like a hiccup than a sneeze. It is important to note that not all tics are preceded by these urges, for example, eye blinking usually is not. These sensory urges are sometimes more troublesome than the tics themselves as the person feels as if there is a constant drive or urge to move. These urges, like tics themselves, have waxing and waning phases and generally improve with tic improvement.
Just as people with TS are more attuned to internal stimuli, they also seem to be particularly sensitive to external stimuli. For example, they are often unusually aware and possibly distracted and distressed by particular sensory stimuli. Tags in clothing, textures of fabrics, tightness or looseness of clothing can all be distressing to the person with TS. Again, this may represent difficulty with inhibition or being able to ignore the uncomfortable sensations. There can also be triggering perceptions whereby tics may be triggered by certain words, sounds, etc. For some people with TS, merely talking about their tics can increase the urge to tic. In a minority of people with TS, urges to perform complex acts that are dangerous or forbidden may also be present. For example, being told not to do something can increase the urge to do it, such as the urge to touch a hot iron or shout out in church. Many people who do not have TS have these urges from time to time but they are easily inhibited or dismissed. "Just right" phenomena may also belong in this category of external stimuli. This can be observed in several areas. Within the visual mode, the most common phenomenon is that of perceptual completion, for example, getting the part in the hair just right or getting books arranged just so. In the tactile mode, "evening up" is often observed. This occurs when someone, for example, bumps their right arm on a doorway and has to go back to bump their left arm so that both sides feel even. Within the somatosensory mode, behaviors can include things such as needing to bang a glass on a table until it feels "just right" or in extreme cases, needing to hit oneself until it feel just right. In the auditory mode, the person will often need to have phrases or words repeated until they sound just right.
This brief description is meant to convey the idea that TS is more than simply having motor and phonic tics and that very often it is the case that the tics themselves are less bothersome than the accompanying sensations and difficulty with inhibiting behavior. Being aware of these internal and external stimuli and having some understanding of the impact they can have should be helpful to those who care for and work with people with TS.

The TSA Medical Advisory Board has not reviewed this material. The authors are solely responsible for its content.

SCHOOL NEWS

by Brenda Harris

Peter and Pam Wright have written several outstanding books and one of the most helpful websites on the Internet about special education issues. Peter W.D.Wright is a special education attorney who has represented children with disabilities and their parents for over 20 years. In 1993 he won a landmark case before the U.S. Supreme Court that has been benefiting children with disabilities ever since.
Pamela Darr Wright, a psychotherapist, has written dozens of articles about special education advocacy. Peter and Pam Wright have together built Wrightslaw, the legal and educational advocacy website for parents, attorneys, advocates, and educators.
The website URL is www.wrightslaw.com. Plan to spend a lot of time going through this site; the depth of articles is impressive. It is organized into sections (Advocacy Library; Law Library; Publications, Services, Projects; Advocate's Bookstore, Communities). A new special education parent's first click of the mouse from the opening page should be the Wrightslaw Game Plan for New Parents (www.wrightlaw.com/advoc/articles/plan_new_parent.html), which is a crash course on special education. This site is frequently updated and subscription to their online newsletter is free.
For those who are not on the Internet, or prefer their information in book form, Wrightslaw: Special Education Law, by Peter and Pam Wright is a mainstay of my advocacy briefcase. The 370 page, 8 O" x 11" reference book is easily carried anywhere (with plenty of margin space to place sticky notes). Its distinctive red, yellow and blue cover on the IEP table makes an advocacy statement of sorts (warning: this isn't the typical parent). But it's much more than an advocacy fashion statement. In one softbound volume are the complete laws and regulations for the Individuals with Disabilities Education Act of 1997 (IDEA-97), Section 504 of the Rehabilitation Act, the Family Educational Records and Privacy Act (FERPA), and relevant U.S. Supreme Court decisions. Each section has an overview, which provides helpful introductions to the parent new to special education. Throughout the book, Peter interjects commentary on the laws and regulations to help the parent make sense of the legalese. A comprehensive index and a CD-ROM allow for easy access to specific information. This volume should be one of the first books a parent buys for their home special education library.
However, my favorite Wrightslaw book is Wrightslaw: Tactics & Strategy Manual. This 140 page manual is divided into three sections - Obstacles & Problems; Tactics & Strategy; and Legal & Advocacy. It details specific strategies on advocating effectively for children in special education. While knowing your rights is one thing, it won't mean much unless the parent knows how to think through possible problems in advance, manage conflict, and use proactive methods for avoiding crises. This is the book to help you learn those methods. This book will likely be replaced by the two new books from Wrightslaw that are due for release this year - Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide and Smart IEPs. For more information on these new books, consult the bookstore on the website.
So if you're a parent new to special education, or one who is still searching for the answers, check out the Wrightslaw website and books. It's a great place to start getting your education in special education.

Excerpted from an article first published in the Summer 2001 Tourette Gazette, newsletter of the Tourette Syndrome Assoc. of Greater Washington

Networking with Other Special Ed. Parents
Parent to Parent King County has started several new list servs to give parents of special education children the opportunity to speak with other parents from their same school district. If you would like to subscribe, send an e-mail to the Parent to Parent coordinator reimeroo@aol.com or call (206) 364-4645, ext. 121. It's important to mention which school district your child is in.

Special Education Forms

If you've been through the IEP or 504 process with your child, you know there is a blizzard of paperwork that you are confronted with. What would be helpful is to have a look at these forms before you go into the meeting with the school. Take a look at this website, http://specialed.about.com/cs/formsamples/ for generic samples of frequently used forms. Some are blank, and some are filled out as an example of how they should look. The forms include: 504 Accommodation Plan; Form for Parents Requesting a Referral; Functional Behavioral Assessment; Extended School Year Addendum; IEP; and Parental Consent for Placement.

ADULT ISSUES

by Andrew K. Stone

When asked to write this article, I was both honored and a bit apprehensive. What could I tell you about Tourette Syndrome that you don't already know? As a kid I was teased; I took a plethora of medications to find the one which would work best; I was angry, confused and in denial about my TS. Has anyone with Tourette not experienced any of these "side-effects" of the condition?In light of this, I thought I'd write about how I achieved life after TS. Of course, I use the term "after" with artistic (and medical) license; there is no true after when it comes to Tourette. The condition may get better - a lot better, for many of us. But regardless of how TS meanders itself through our bodies and our lives, like a memory it stays with us forever.
My most vivid memories are from high school. I attended a prep school in Rhode Island where I would have trembled without tics. In a school with the motto "Play the Game," I wasn't in the least athletic; I parked my 1970 station wagon between BMW's and Mercedes; my leather jacket stood out like a black eye amongst the colorful ski parkas. I didn't have a chance - or so I thought.We all want to fit in, but I was an outcast in my school before anyone laid eyes upon me. So I rebelled. My attitude was, "If they won't accept me, the h--- with them." I became a Self-Proclaimed Nonconformist (SPNC) convincing myself that I would play my own game. I played in rock bands and hung out at local nightclubs - sure I was underage, but I was tall and could sneak in. I wrote music and took an interest in the arts. I even brought my guitar to school and jammed by myself, wearing dark sunglasses and Beatle boots.
And without my conscious knowledge, I became increasingly introspective.
The thing is, my Tourette - as severe as it was - wouldn't have held me back as much as I held myself back. I was convinced that it was worse than it probably was. As I walked through the halls, I could feel the kids' eyes clawing into me. The sounds of their voices diminished as I drew near. In my ears, whispers became shouts. But I had created a different monster form the one I felt surging throughout me. The Self-Proclaimed Nonconformist. Were the kids reacting to this or the Tourette? That question never crossed my mind.
The two monsters did work together, through. They were perfect accompanists for one another. When I played guitar it was to say "listen to me, don't look at me." I was tearing up the fretboard to tear away my identity as the kid with the weird moves. But this fed the SPNC. I became known as the best guitarist in school and that set me apart from the rest.
But there was more to me than just a guitarist and I would find it strange - years later - whenever I'd bump into someone from my class. I would invariably be asked the same question: "How's the band.? What band? I'd been in dozens of bands and each had its own name. For all these persecutors knew, I could have been between bands!
Aah... but I was the SPNC. That meant going out of my way not to let people get too close. Setting myself apart. How could I fault anyone for not knowing the band's name? I'd barely let them know my name.
Obviously, I can't take all the blame, but I also have learned not to place it. I've found that it's only natural for people with Tourette Syndrome to become introspective. Kids are mean; kids tease, and at a certain point most of us would rather just look inside ourselves than at the world around us. I believe this is what sparks creativity among people with TS. It certainly has in my case.
So let's flash-forward a decade and a half. Happily, I've disposed of the SPNC. He's superfluous, as we all have something which makes us unique. You can dye your hair, pierce your nose, or even play guitar, but you still have Tourette. However, there's probably another kid in class who also is dyeing his hair. Ever wonder why?
That's what I do every day. I wonder about people - what makes each of us tick, and I mean that psychologically rather than neurologically. As an author, I'm fascinated with people and I want to learn about all the creatures that walk and stalk this earth. And I started - and continue - with myself.
Do I still feel the clawing eyes? Sure, and each time they pry open a memory. But now, I'm in the after and the memories don't hurt as much. I don't suffer anymore. Rather, I've chosen to accept my Tourette, and I live with it and happily, I fit in with it. I feel this is my greatest success in life and it is one we can all achieve.
Because we've all got something. But we've all got everything, too.

Andrew K. Stone is the author of the novel, "All Flowers Die" (So There Books, ISBN 0967907306). He is also the Chairperson for the Public Awareness Committee for the MA TSA Chapter and has donated a portion of his website for writers and artists with TS to post their work (www.sotherebooks.com).

LEGISLATIVE UPDATE

by Jai Kelly

Due to the tragic events on September 11, many of the legislative issues we had hoped would be addressed have been delayed while Congress worked on legislation related to the threats on this country. The danger posed by anthrax being mailed to members of Congress has also slowed action on much needed legislation. In light of this fact, constituents are being advised to call or e-mail their Representatives instead of sending letters through the postal service.

WASHINGTON STATE

Washington State services for the disabled will be hit hard by upcoming budget cuts. Due to a slumping economy, the revenue available for all state services has been greatly reduced. The recent passage of I-747, which will limit property tax increases to 1% annually, unless a greater increase is approved the voters, will also have a negative impact on services for the disabled. According to state law, the governor must submit a balanced budget. In order to do this, Governor Locke has requested a 15% budget cut for the Department of Social and Health Services. This was prior to the passage of I-747. Even deeper cuts may be necessary in the near future. If there was ever a time when we need you to take an active role in advocating for the rights of those with TS and other disabilities, it is now. The cuts DSHS has proposed making include:

Eliminating the Medicaid Buy-In program, also known as The Ticket To Work program. This program allows people receiving SSI or SSDI to continue to receive Medicaid health insurance, if necessary, when they return to work. Many groups have worked hard to get this legislation passed. In fact it was only passed in the last session of the legislature and was not yet fully implemented. We are already in danger of losing it.

Washington State Children's Health Insurance Program, which helps provide health insurance for children in lower income families is also in danger. The current proposals call for freezing enrollment in the program beginning in July, 2002.

Freeze High School Transition Placements - The High School Transition program provides services to assist students in Special Education in making the transition from high school to working world. The cuts proposed for this program would allow continued funding for those already enrolled, but would provide no additional funding for new students.

On a positive note, the State Public Employees Benefits Board (PEBB) approved a change in mental health benefits for state employees and retirees. PEBB health plans currently have a 50% copay for outpatient mental health visits and a 20% copay for inpatient treatment. However, beginning January 1, 2002, the same copays that apply to other medical services will apply to mental health services. Although this only includes state employees and retirees, advocates of mental health parity see it as a step towards parity of mental health insurance coverage for all workers. Once state and federal insurance plans provide a needed benefit, it is often easier to get legislation passed guaranteeing those same benefits for employees in the private sector.

FEDERAL

Mental Health Parity
The Senate has passed its version of the parity in mental health insurance legislation (S 543). Although this is a step forward, one potential problem is that health insurers are not required to provide mental benefits. However, if they do, then they are required to provide the same benefits for mental health insurance as they do for any other medical services. The House had already passed its version of the bill (HR3061). The House has historically been less supportive of mental health parity legislation. The House and Senate will be meeting to iron out differences in their versions of the bill before presenting it to the President for his signature. Letting your Representatives in both Houses know you support parity in mental health insurance can make a big difference. Also, let them know you support making mental health benefits mandatory and not optional.

ESEA
Both the House and Senate passed a reauthorization of the Elementary and Secondary Education Act (ESEA). The bills have gone to a conference committee to iron out differences. Both bills contain provisions which would repeal key protections of the Individuals with Disabilities Education Act. The Senate bill contains an amendment which would allow school authorities to cease special educational services or segregate students for relatively minor violations of the school code of conduct. The House bill contains the Norwood (R-Ga.) amendment that allows for the cessation of educational services if a student with a disability violates the school code regarding use and possession of a weapon, illegal drugs or commits "aggravated assault and battery," which states would define. In effect, these amendments will repeal the following vital provisions of IDEA: Free, Appropriate Public Education (FAPE); Least Restrictive Environment (LRE); Individual Education Program (IEP) parent/educator partnership; and due process. While we agree that students who truly pose a threat to fellow students or teachers may need to removed from school for violations of this type, we believe that these children still need educational and counseling services which can be provided outside of the school itself.

Children's Health Act of 2000
Title 23 of this Act of 2000 contains provisions which authorize programs for public and professional education about Tourette Syndrome. While the Act itself has passed and has broad support in the House and Senate, funding provisions for it remain unresolved. Please contact your Representatives and let them know you support full funding for this Act.

UPCOMING PROGRAMS

Upcoming Special Ed. Workshops
SEACC, the Special Education Advisory & Advocacy Council for the Seattle School District is sponsoring workshops for both parents and professionals. They will be held at the School District Administration Building located at 815 4th Ave. N. in Seattle. Here are the upcoming trainings:

January 12 - 9am to 4pm: Special Education and the Law
January 26 - 9am to 4pm: 504 and Accommodations
February 23 - 9am to 4pm: IEPs

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