CONNECTIONS

CHAPTER NEWS

As part of our October educational conference, we will be holding our first annual chapter meeting. At this very short meeting (15 minutes), we will highlight our current and future goals, present our budget and install our new board members. This year for the first time, we would like to elect board members. So, at this time, we are asking for people to submit their names for consideration as new board members. In the September newsletter, a ballot will be included with the names of the people who have volunteered for each board position. People will be asked to vote during September, and the new board members will be installed on October 7.

Please take some time to consider whether you would like to make a commitment in time and energy to our state chapter. Our current board members have worked extremely hard over the past three years to revitalize our chapter. We feel we have accomplished a great deal in raising awareness of TS in the greater community; bringing people together through support groups, family activities and educational conferences; and providing much needed information, materials, resources and emotional support to the many people who contact us throughout the year. It's time for some new blood to help keep the momentum going and to assist those members willing to continue on the board. We need your help, if this chapter is going to continue to be active.

Board meetings are generally held the second Tuesday of each month, September through June, from approximately 7-9pm, with a one-day planning retreat sometime in the summer. We meet in Seattle and Renton. However, it is not necessary to live in that area to be on the board. We do have some board members who contribute to our efforts who live too far away to attend every meeting. A one-year commitment is required of our board members. Some members put many hours of volunteer time in a month; others just a few. It is totally dependent on your interests and abilities. Being on the board brings the added benefit of being closer to the latest information and research on TS and associated disorders. One thing is for certain - we have a lot of fun together.

The following positions are available. However, if you don’t see a position which interests you, we would be glad to have you volunteer your time as a board member “at large,” where you are available to assist on different projects as your interest and ability dictate. If you have a special interest which you do not see listed here, let us know!

President - Our current president would like to stay on the board, but in another capacity. The president’s main duty is to serve as a liaison between our chapter and the national TSA. The president keeps in close contact with the Director of Chapter Services, and is the contact person when national needs to pass information onto the chapter. He/she signs official documents and checks and facilitates the monthly board meetings. As an extra added bonus to becoming president this year, national has offered to pay the traveling expenses for the new president to attend the biennial conference in Alexandria, VA to receive leadership training as well as attend the conference sessions. What a great opportunity!

We also need board members to head up the following projects:

Support groups - Be the chapter contact person for the four support groups currently functioning in our state. Help individuals start a support group in their local area.

Fundraising - Help generate ideas for fund raisers and plan them. Find volunteers to staff them.

School awareness - Help find advocates throughout the state who can assist parents with school-related problems. Plan projects which will help raise the awareness of schools to the issues surrounding TS.

Adults with TS - Compile information and resources of use to adults with TS, including medical, social and employment related.

Educational conference - Head up the effort to plan next year's educational conference.

If you would like to make a difference in the lives of our 850 chapter members, please contact the editor and submit your name. Thank you!

Annual Conference 2000

Bowl-a-thon Raises Money for our Chapter

Thanks to all of you for making the bowl-a-thon a success...

And thanks to our volunteers...

We also give kudos to Judy Swain who called into the Dori Monson talk show on KIRO radio when the topic was the Michigan teenager with TS who was fired from his job at a supermarket because of his coprolalia. She defended the rights of those with TS to work out in the public and not be relegated to jobs where the public cannot see them.

Here are Two Other Good Ways to Support our Chapter

Greatergood.com - Do you get an anxiety attack every time you contemplate having to take your child to the over-stimulating atmosphere of Toys ‘r Us? Good news. Now you can make all your purchases on- line at their web site and 5% of the purchase price will be donated to our chapter! Toysrus.com, Spiegel.com, Priceline, the Apple Store (Apple Computer), World2Market, Patagonia and Sundial.com have recently been added to our shopping village. If you ever do your shopping on-line, please remember to go to our chapter web site www.tourette.net/wa first and click on the greatergood.com button. Then you can access the stores just listed along with scores of other stores. It's a convenient way to shop and a painless way to help our chapter.

Chapter Directory

Name  _________________________________________________________________________________

Address _______________________________________________________________________________

Phone _________________________________________________________________________________

E-mail address ________________________________________________________________________

Person(s) with TS - name, age, sex, relationship to you _______________________________

_______________________________________________________________________________________

Do you home school? ___________________________________________________________________

E-mail information to TSAWASH@aol.com 

NEWS FROM NATIONAL

TSFC Conference - The Tourette Syndrome Foundation of Canada is also holding its annual conference this summer on July 1-2. "Reaching New Horizons" is the theme of the two-day conference which will bring together many well-known names in the TS community. It will be held at the Delta Hotel in St. John’s, Newfoundland. More information can be obtained by calling 1-800-361-3120 or at their web site www.tourette.ca.

National Newsletter - National TSA is publishing a children’s newsletter. It's by, for and about kids with TS. If you'd like to receive a free copy, call Peggy Harford at (718) 224-2999, e-mail at peggy.harford@tsa-usa.org or fax at (718) 279-9596. Give your name, age and mailing address.

Grant Award - In February of this year, an $8.5 million grant was awarded to the TSA International Consortium for TS Genetics by the National Institute of Neurological Diseases and Stroke, a branch of the National Institutes of Health. This major support is the culmination of over a decade of groundwork by TSA in funding a unique scientific collaboration among researchers from 13 centers in six countries. Over 20 investigators have been cooperating closely in the search for the basic genetic causes of TS. Last fall, the Consortium published revealing findings in the American Journal of Human Genetics implicating two chromosomes (4 and 8) as suspect regions for the TS gene(s). The new grant award ensures that the multi- site search will go on, and at an accelerated pace.

NEWS YOU CAN USE

Reprinted from TSA-IL Newsbriefs, Spring 2000

New Book on OCD - A recently published book, Up and Down the Worry Hill, by Aureen Pinto Wagner, Ph.D. focuses on the needs and questions of children with OCD by describing it from a child’s perspective. The book illustrates the use of behavior therapy for OCD in a manner easily understandable to children. It shows them how they can begin to take back control of their lives from the OCD and removes the sense of blame that often accompanies this disorder. Dr. Wagner is a clinical child psychologist specializing in behavior therapy of OCD and other anxiety disorders in children. For more information, or to place an order, call Lighthouse Press at 1-888-749-8768.

Special Assistance Pass - Planning a trip to Florida this summer with the kids? If you are going to one of the Florida theme parks such as Disney World, Sea World, Busch Gardens, and others, think about using their special assistance pass. This is for either children or adults who are unable to wait in long lines for attractions because of their disability. The pass allows the child or adult with TS and his/her traveling companions to advance through the handicap entrance. Arrange for this pass by contacting Guest Services at the theme park. A letter from the treating physician stating that waiting in long lines would lead to increased TS symptoms (anxiety, frustration, nervousness, etc.) must be provided. This pass may also be available at California theme parks. Check with them before traveling.

MEDICAL NEWS

Many people are interested in non-invasive, non-medicinal ways of treating TS and associated disorders in themselves or their children. One type of alternative treatment which seems to hold some promise is neurofeedback (also known as EEG biofeedback). Neurofeedback is a new, more advanced type of biofeedback which directly impacts the brain. This treatment has been used with success for a wide range of conditions such as brain injury, depression, addiction, epilepsy, and ADHD, as well as TS. With the help of a computer, the patient learns how to retrain his/her own brain, producing new positive patterns and reducing maladaptive patterns.

Initially, the therapist will hook the patient up to the system and identify particular brain wave frequency patterns which need to be changed. There are various treatment protocols which have been identified. Because of the multiplicity of symptoms with TS+, it is sometimes difficult to establish just one treatment protocol. The most troublesome symptoms are targeted first. One effective protocol in dealing with ADHD, TS, learning disabilities and depression is Sensorimotor Rhythm and Beta Training. This is aimed at improving mental functioning, and the remediation of deficits such as learning problems, cognitive deficits, inability to organize sensory input and some sensorimotor related problems.

Once the therapist identifies which wave frequency patterns need to be changed, she sets the goals on a computer which is used with a video game. As the patient plays the game, he scores when the goal is reached. The video game is similar to pac-man, however, instead of using a joystick to move the characters on the screen, the patient is able to control the screen simply by looking at it and using his brain. The computer itself makes no changes to the patient’s brain; it merely provides both auditory and visual feedback. This feedback enables the patient to tell himself what his brain is doing - either concentrating or drifting off. The patient must train his brain to reach the goals programmed into the computer by the therapist based on the feedback signal received. The more he is able to produce the brain waves associated with being attentive, the more he is able to control the game. Typically, as the patient has more and more neurofeedback sessions (50-60 were recommended by one therapist for TS and ADHD), his ability to control his brain patterns is increased and he is able to continue to change the patterns even when he is not doing the feedback session. It is like learning any new skill; once one has mastered it, one is able to use that skill forever, without the need to continue training. It has been noted, however, that in the case of TS, there is more of a tendency for these patients to backslide somewhat between training sessions, necessitating more frequent trainings initially, and the possibility of “booster” sessions after the bulk of the training is completed. Although neurofeedback can be used for both children and adults, it has also been observed that the full remediation of tics with such training is much more successful if the tic behavior is of recent onset. Adults who have had TS symptoms for many decades are less likely to find them fully eliminated.

Patients who undergo neurofeedback training often find that they can achieve an overall feeling of wellness. Since the brain controls the entire nervous system, changes to the brain will affect many different functions of the brain. In what’s termed the generalization effect, the patient might notice an increased ability to concentrate along with the ability to sleep better and a more optimistic attitude, for example. One interesting study had patients undergo brain SPECT imaging, which is used to measure brain metabolic activity. This study noted that children with Oppositional Defiant Disorder showed the same SPECT pattern as those with Obsessive-Compulsive Disorder. It was theorized that children get stuck on saying “no” in the same way that OCD sufferers get stuck on certain thoughts and behaviors. A conclusion which can be drawn from this is that the use of the SSRI family of medications which are often used to treat OCD may also be useful in the treatment of ODD, and that the use of neurofeedback training which can successfully treat OCD may also work in the case of ODD.

Sessions typically run for 45 minutes, which includes assessment and review time. Therapists charge between $80 and $125 per session. For 50-60 sessions, obviously this is not an inexpensive form of treatment, however many insurance companies will cover the cost. For more information on neurofeedback, go to the EEG Spectrum web site at www.eegspectrum.com/. This web site also has a listing of practitioners and clinics in this state. You may also call the information line number, 206-781-9035, for the names of practitioners.

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

The Use of Nicotine in Treating TS

Gerald Erenberg, MD, Chairman of TSA’s Medical Advisory Board, strongly advises patients and their families to consult with their physicians before using the nicotine patch since no studies have been done on how nicotine might interact with medications other than Haldol which are typically taken by people with TS. Obviously there is also a concern with exposing children to long-term usage of nicotine. He suggests waiting for a scientific review and replication of Sanberg’s study before attempting to use nicotine to treat TS symptoms.

FDA Alerts

Cylert (pemoline) is banned in at least two countries and restricted in the U.S. To learn more about liver monitoring and informed consent, check out the FDA MedWatch web site at www.fda.gov/medwatch/safety/1999/safety99.htm#cylert.

Reprinted from TSA-IL Newsbriefs, Spring 2000

Use of Behavior Drugs in Children

In response to growing concerns about the use of medications to treat children with behavioral disorders, the federal government announced that it was taking the following steps: it will start a five-year, $5 million research project to study children who take Ritalin to treat ADHD; it will redouble its efforts to study labeling and dosage of psychiatric drugs for youngsters; and it will convene a conference on the issue this fall. This is welcome news to parents whose children have been prescribed their medications, “off- label,” in other words, in a way that is not recommended by the drug’s manufacturer. Few medications that are prescribed for TS, ADHD or OCD have been formally approved for use by children.

Diagnosis Standards for ADHD

The American Academy of Pediatrics has issued its first guidelines for diagnosing ADHD. From 4% to 12% of school-aged children are believed to have ADHD. The hope is to more consistently and accurately diagnose the disorder which many physicians currently believe is being misdiagnosed and overdiagnosed. This is the first time the academy has drawn up guidelines for a behavioral ailment. They are as follows:

• Doctors should routinely ask parents of school-age children about their behavior in school and at home and inquire about academic difficulties. Children with typical ADHD symptoms as well as academic underachievement should be evaluated for the disorder.
• The diagnosis of ADHD must meet criteria established by the American Psychiatric Association, which includes a list of 18 symptoms such as difficulty listening, forgetfulness, frequent fidgeting and a tendency to interrupt conversations and games. At least six symptoms must be present; symptoms must impair ability to function in at least two settings (such as school and home) and symptoms generally must be present for at least six months.
• Assessing ADHD requires information from parents about the symptoms and age of onset. Information should also be gathered from teachers or other school professionals.
• Assessment should also include evaluation for coexisting psychological conditions which often occur with ADHD, including depression, anxiety and learning disabilities.
• Diagnostic exams such as blood-lead and thyroid tests are not routinely recommended. Research has not shown a lick to ADHD.

SCHOOL NEWS

by Fran Nickey

Many parents and teachers who have heard of the term Extended School Year (ESY) services think that these services are available only to students with the most severe disabilities. No matter how mild your child’s disability or disabilities, if your son or daughter has an Individualized Education Plan (IEP), the IEP chairperson is obligated to explain that ESY services are available for those students who qualify. ESY services are an individualized extension of specific services beyond the normal 180 day school year provided as part of a FAPE (Free, Appropriate Public Education) and outlined in an eligible student’s IEP. ESY services must be provided for students who meet one or a combination of the established criteria for eligibility. ESY services are provided most frequently for students who have demonstrated or are likely to have significant regression in a reasonable period of time. For these students, ESY services are not meant to teach new skills or increase progress on goals and objectives already achieved, but rather to ensure that students will not lose ground that they will have difficulty regaining.

How can you determine if your child will significantly regress in previously acquired skills over the summer and have difficulty regaining those skills? Look at your child’s history and compare where he/she was before and after the summer break in previous years. If he/she had the same teacher, did the teacher comment about how much was lost over the summer? Do you see your child on an academic treadmill - increasing reading, writing and math skills from September through June one year, only to begin again at a significantly lower level when school starts the next fall? Does it take months to get back to the skill level from the previous June?

Information that can be used to document that your child will have difficulty recouping skills lost include reports prepared by teachers and therapists, formal assessments, pre and post-summer testing, and medical and other outside agency reports. If the IEP team agrees that your child will significantly regress without ESY services, then they must determine the acquired skills in which they anticipate the regression/recoupment difficulties will occur and plan and document the type and frequency of special education instruction and/or other related services which will be used to address those difficulties.

There are a number of other criteria established which can be used to determine if a student may qualify for ESY services for reasons other than regression/recoupment. If a student has reached an emerging skills breakthrough point on IEP targeted critical life skills (any skill determined by the IEP Committee to be critical to the student’s overall educational progress), he/she may be eligible for ESY services. For example, if a student is on the cusp of reading, he or she may qualify on that basis. In some instances, a student may be provided with ESY services if his/her interfering behavior(s) stated by the IEP objectives have prevented (or without ESY services will prevent) him/her from receiving some benefit from their educational program during the school year. If the nature and/or severity of a student’s disability or the student’s degree of progress toward an IEP stated that critical life skills is likely to prevent the student from receiving some benefit from his/her educational program during the regular school year without ESY services, then he/she may be eligible.

Sometimes a student will qualify if an IEP Committee determines that there are special circumstances, for example, that prevent a student from receiving some benefit from his/her educational program during the regular school year unless he/she is provided with ESY services, or if the student would be at risk for being moved to a more restrictive area without receiving ESY services.

Like determining eligibility for special education and/or related services, determining eligibility for ESY services is not a simple process. But what is very clear and simple is that parents of every student who has an IEP must be told at their child’s annual IEP meeting about the availability of ESY services. Additionally, the IEP chairperson needs to explain the criteria for eligibility thoroughly to parents so that every student who qualifies can take advantage of ESY services.

The revisions in IDEA 1997 may affect the provision of ESY services. Check with the staff specialist on ESY Services in your local school system or request information from the Director of Special Education.

Reprinted from The Tourette Gazette, Summer 1999

School Suspension up to 10 Days

Has your child been suspended from school? Do you know what your rights are in this regard? The Supreme Court in Goss v. Lopez established that removal of a student from school for more than ten school days requires formal due process. The misbehavior must have violated a clear written rule that the student was aware of and the student must be given an opportunity to explain his side of the story. The 1997 IDEA amendments allow school personnel to propose alternatives as long as they are no more than ten school days and the disabled student is not subject to more severe penalties than a nondisabled student. School personnel can order a change in the placement of a child with a disability to an appropriate interim alternative educational setting, another setting, or suspension, for not more than ten school days. Doing this would trigger the following procedural safeguards:

• Notice to parents of their rights which includes the duty of the school to continue to provide a free, appropriate public education (FAPE).
• Notice of Section 504 rights, which may include the duty of the school to conduct an independent evaluation.
• Specific “Prior Written Notice” to the parent of the proposed action.
• A functional behavioral assessment which must include the parent.
• A positive behavioral intervention plan, which must include the parent.

Special Ed. Questionnaire

LEARN Clinic

LEGISLATIVE NEWS

The Supreme Court has decided to hear two disability discrimination cases, Florida Department of Corrections v. Dickson and Alsbrook v. City of Maumelle which call into question the constitutionality of Title II of the Americans with Disabilities Act (ADA). The Court should announce its decision late this month. At issue is whether Congress had the constitutional authority under the Fourteenth Amendment to enact the ADA. If the Supreme Court says Congress did not, individuals may no longer be able to enforce the ADA against the states. More importantly, a negative ruling could call into question altogether the constitutionality of Title II of the ADA, as well as other disability rights statutes. Depending on the scope of the ruling, this could mean:

• States may no longer have to comply with ADA’s integration mandate. People who are unnecessarily placed in state institutions may no longer have recourse under the ADA.
• States may no longer have to make their buildings and services accessible.
• State employers may no longer have to comply with the ADA’s mandate against employment discrimination. State employers may be able to refuse to hire and/or fire people with disabilities at will, and may no longer have to provide employees with disabilities reasonable accommodations in the workplace.

Patient Bill of Rights

• The implementation by the health carrier or policies and procedures governing the collection, use, and disclosure of health information.
• Adequate choice provided to the enrollees among qualified providers.
• A process under which an enrollee whose medical condition warrants it can have a medical specialist as a primary care provider.
• The right to obtain a second opinion on diagnosis or treatment.
• A fast and impartial grievance process to resolve health care disputes.
• A timely external and independent medical review of health care disputes.
• The right to sue managed care plans if patients believe their managed care system has harmed them through negligence.
• The right to get access to information about health care plans.
• Protection from unnecessary invasions of health care privacy.
• A health plan medical doctor who is a licensed doctor.

On a national level, the Family Opportunity Act has been introduced by Senators Grassley and Kennedy to allow states to offer middle-income families of children with disabilities the option of buying into Medicaid. Currently, those children are ineligible because their families’ income is too high. The Act requires parents to pay premiums for the coverage on a sliding scale based on their income, and to take employer-sponsored family coverage if available, but allows them to buy into Medicaid to supplement the employer benefit package. It will be up to each individual state to decide whether to offer this program to its citizens. In light of the fact that Washington still does not have a mental health parity law, it is very important that our state take this initiative.

UPCOMING CONFERENCES

Would you like your child's teacher next year to take advantage of some training opportunities in the summer which may benefit your child? Let them know about the following conferences and encourage them to attend.

Program:      Educating Students Who Have Significant Developmental Disabilities
                 (Autism, Cognitive, Physical, and/or Sensory)
Presented by: Various educational services districts and OSPI
Date:         August 7-11
Location:     Wilson Middle School, 902 S. 44th Ave., Yakima
Cost:         $175
Registration: (360) 586-5489

Program:      Effectively Serving Children with Emotional & Behavioral Disabilities
Presented by: Washington Re-EDucation Association
Date & Time:  August 7-10, 8:30am-4pm
Location:     Shoreline Center, Shoreline
Cost:         $300
Registration: (206) 230-5292

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