CONNECTIONS

BOWL-A-STRIKE FOR TS AWARENESS

PHYSICIAN REFERRAL LIST

Our chapter has been working to update our state physician referral list for two years. We asked chapter members to submit names of doctors, psychiatrists and other counselors and therapists who have experience working with TS patients and whom they would recommend. Although it is larger than what it had previously been, we are always in need of names of qualified professionals to add to this list, especially outside the Seattle area. We urge you to contact the our info line at (206) 781-9035 with the name of your professional so that we might continue to expand our list. Call that number also to get a copy of our most recent list. Many, many thanks go to Leah Currier in Ilwaco, who took on the project of organizing these physician names and mailing questionnaires to them. She has done our chapter a great service.

THERAPY SERVICES

WELCOME TO OUR NEW BOARD MEMBERS

We are now well on our way to our 1999 goal of increasing our board membership to ten people. As you can see, living in Seattle is not a prerequisite to becoming a board member! As current board members either retire or decide to take a different position on the board, we will be in need of the following: Program Coordinator - This person is in charge of planning our three mini-conferences each year. Scouting out a location in which to hold it and lining up speakers are the main duties. President - This person's main duty is as a liaison to the national TSA. He/she would also facilitate the monthly board meetings. Secretary - The main duty here is to take minutes of our monthly board meetings. Can you help?

NEWS FROM NATIONAL

Various sessions of the October, 1998 national convention were videotaped and are available for sale. Call Tom Tragert at (301) 656-7455 to order tapes from the following sessions:

Impact & Challenges of Education
Behaviors - Observable & Unseen
Educational Strategies & Techniques
Comorbidity & Differential Diagnosis
Scientific Basis of TS
Research Update
An Adult's Rights & Responsibilities
Criminal Behavior and the Law - Limits of Advocacy
Advocacy 101 - The Basics
Educational Initiatives and/or Advocacy
Challenges of Parenting a Child with TS
TS & Multiple Disorders OCD/ADD
Keynote speech by James Leckman, MD - What's New in TS Research?

Audio tapes of all sessions from the Leadership Training, Educational Symposium, Medical Symposium and General Session Conference are available through John O'Leary. Call (202) 332-8377 or e-mail johnolea@concentric.net.

Members of the Tourette Syndrome Association might have noticed a familiar face when they received their Winter 1998 newsletter. Our own Meg Howard was pictured on the front page article concerning TS on the job, and was quoted extensively throughout the article, as was Erin Hewitt. Meg is a board member of our state chapter and answers our info line. Erin writes the Dear Erin column for this newsletter and often helps our chapter out with kid activities. Way to go Meg and Erin!

SUPPORT ON THE INTERNET

If you like to spend your evenings on the Internet, here's a good source of support and knowledge for TS families. A chat room and message board has been set up through American On-Line dealing with TS. The majority of the people accessing the message board are parents, but some adult Touretters also visit it, as well as professionals. There are three live chats available on Tuesdays at 10am and 10pm and on Saturdays at 10pm. This is a good way to feel closer to people who share the same situation as you, especially if you are geographically far from any other kind of support in our state. You must have access to AOL to use this message board or chat room. To get to the message board, go to KEYWORD>Parent Soup>Message Boards>Support Groups>Tourette Syndrome. For the chat room, follow the same path but click on Chats instead of Message Boards.

FOLLOWING UP...

We reported in our September, 1998 issue of Connections concerning an offensive radio ad for Tacoma Dodge which parodied someone who had TS and OCD. Our chapter's board wrote in protest to Tacoma Dodge, KBSG radio station and Woodstock & Assoc., the ad agency responsible for the advertisement. We would like to share with you their replies.
(Temporarily omitted from online newsletter)

SCHOOL NEWS

In October, national TSA mailed to each chapter a copy of "The Educator's In-Service Program on Understanding Tourette Syndrome." This comprehensive educator's curriculum is a large binder of information that can be used by anyone with a good familiarity of TS to train school personnel in understanding and properly educating students with TS. The curriculum is very well done and includes the video, "A Regular Kid, That's Me," handouts for the educators, a script for presenting the information to the educators, and transparencies which accompany the script.

Now that national has done their job in compiling this information in a thorough and organized manner, it is up to our chapter to disperse the information. We need volunteers in every part of the state to go into the schools and present this to teachers, psychologists, therapists, principals and more. Could you help us out in this way? If you have been dealing with TS in your life long enough to have a good familiarity with it and its associated disorders, and if you are knowledgeable about special education laws that govern kids with disabilities - we need you! PAVE offers free workshops throughout the state to parents who want to learn more about IDEA and Section 504 regulations if you feel you need to brush up in that area. Raising awareness in the schools is key to helping our children receive the free and appropriate education to which they are entitled. If you are able to help the children out in this way, please contact the editor.

The DO-IT (Disabilities, Opportunities, Internetworking & Technology) program, sponsored by the National Science Foundation and the University of Washington, works to increase the representation of individuals with disabilities in science, engineering, mathematics and technology academic programs and careers. Two particular aspects of the program, DO-IT Pals and DO-IT Scholars might be of interest to TS kids in high school.

DO-IT Pals are high school students with disabilities who want to explore careers in the subjects listed above and learn more about how to prepare to enter these fields of study and employment. DO-IT Pals are supported with information about college entrance requirements, application procedures, college survival skills, internship opportunities, resume and interviewing tips, and additional resources to help them through the transitions to college and employment. This is all done over the Internet in communication with DO-IT mentors who are college students, faculty and practicing professionals. Access to the Internet either at home or at school is necessary.

DO-IT Scholars are college-capable high school students with disabilities who are self-motivated and have leadership potential. DO-IT Scholars are loaned computers, modems, software and adaptive technology for use in their homes. They learn to use the Internet to access information and to communicate with others. DO-IT Scholars gain valuable academic, career and personal insight by communicating electronically with each other and with DO-IT mentors. DO-IT Scholars attend two live-in summer study programs at no cost at the University of Washington and participate in work-based learning experiences. They experience college life and prepare for success in college and careers.

The program is open to any student in Washington state. The child of one of our board members has been a DO-IT Scholar and reported it to be a good experience. For further information or an application, contact the DO-IT program at (206) 685-DOIT or doit@u.washington.edu.

The Office of the Superintendent of Public Instruction has been revising the TS Care Plan for the past year. The previous version was over 10 years old. This document gives updated medical facts regarding TS, OCD and ADHD as well as some helpful information to educators concerning what accommodations might be necessary for a child with TS in the classroom. OSPI will be distributing a copy of the plan to every school nurse and every special education director in the state. They are also giving us a number of copies for our own distribution. We will have them available at our mini-conferences, or you may request one by contacting the editor listed on page 6. It is also available to be downloaded on OSPI's website, www.ospi.wednet.edu

Is your child getting ready for transition from high school to the outside world? Under IDEA, transition services are defined as a coordinated set of activities for a student designed within an outcome- oriented process that promotes movement from school to post-school activities, including post-secondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation. If your child is served under an IEP, transition services must be addressed starting at age 14. If you would like further written information on transition services, contact the editor.

A 22 page parent's guide to recent changes in the Individuals with Disabilities Education Act (IDEA), with sections on rules for disciplining special ed students is available. Send a stamped ($1.24 postage), self-addressed 9x12 envelope or $2 for postage and handling to Bazelon Center, 1101 15th St. NW, Washington DC 20005-5002. It's available in English or Spanish.

LEGISLATIVE UPDATE

We have been following the Washington Coalition for Insurance Parity as they attempt to require health insurance companies to provide coverage for mental illness at the same level they cover other medical conditions. On January 19, a mental health parity day was held in Olympia. About 150 people rallied on the steps of the Capitol building. Senate Bill 5425 requiring parity is currently being heard. This bill, however, would exempt self-funded plans from having to provide mental health coverage on an equal basis as other coverage. The state and Boeing are two employers who offer self-funded plans.

As we wait for this bill to be acted on by the state legislature, there is progress on another front. Our state insurance commissioner, Deborah Senn, is requiring all insurance companies to provide more complete and understandable information to consumers on what level of mental health coverage they currently provide. The "mental health benefit definitions" (Section 284-43-030 of the WAC) have been amended to include much more descriptive language. A new section has been added which requires each insurance carrier to answer a variety of questions regarding mental health benefits. Some of the questions are:

• What are the steps that must be taken to have mental health services paid for by my plan?
• In which of the following circumstances where I might need mental health services would I find them excluded or subject to restrictions or limitations other than medical necessity? (One answer would be a mental disorder that has a congenital or physical basis such as TS or may be partially covered under the medical services portion of the health plan.)
• Do I have to use certain mental health providers to pay the least out of my own pocket under this plan? How can I get a different mental health provider if I want one?
• What is this plan's most common goal in financing mental health treatment for anxiety in children?
• Does this plan have a process by which I may obtain a reconsideration of an exclusion, restriction or limitation on coverage?

If the insurance carrier does not provide this new section of questions and answers, it must instead provide a document categorizing its mental health benefits as falling under "level A, B or C" mental health coverage with a definition as to what those levels mean. These new regulations become effective July 1, 1999. This is a good step in helping people understand just what their mental health coverage will be before they sign up for a plan.

And here's a tip for people whose plan provides for a limited number of inpatient and outpatient visits per year. If you or your child is seeing a mental health professional on an outpatient basis and are certain that you will not need inpatient benefits for that calendar year, check with your insurance carrier to see if they will trade in some of the inpatient benefits for additional outpatient benefits. We can't guarantee that it will work, but it was recommended by an insurance company representative as a strategy worth attempting.

Senate Bill 5416 and its companion House Bill 1301 are currently being debated in the state legislature. These bills would create a Children's Health Insurance Program. The program would allow children in families with incomes up to 250% of the poverty level to have access to health care (about $41,000 for a family of 4). Currently the state offers insurance for those families with an income up to 200% of the poverty level. It is estimated that up to 10,000 additional children would receive health insurance as a result of this bill.

MERCI...GRACIAS...DANKE

Our thanks go to Rick Leavitt, who has given presentations in the classroom at a Bainbridge Island elementary school and at the Ruth Dykeman Childrens' Center in Burien on what it's like to have TS. His firsthand experience of living with TS made it easier for the children at these two schools to understand their fellow classmates who have TS -- and he won rave reviews from the school staff. Thank you Rick!

Thank you also to Hazel Rosenthal, who has been volunteering her time quarterly to help with the bulk mailing of this newsletter. It's a lot of work for a really good cause!

And last, but certainly not least, we are most grateful to Ken Clogston, who owns PDQ Printing in Bellevue, and his fiancee Janet Heger, for donating the costs involved in printing this newsletter. It is a tremendous gift to our chapter. We can't thank you enough!

SENSORY SENSITIVITY

by Robin Jewers, OTM
Occupational Therapist
TS Clinic
St. Boniface General Hospital, Winnipeg

Types of Sensory Sensitivity
People who have Tourette Syndrome, Attention Deficit Disorder or a Pervasive Developmental Disorder often experience an altered sensitivity to sensory stimuli. Their senses of touch, smell, vision and sound tend to be hypersensitive. Movement sensations can also be misread.

1. Touch
   People who are sensitive to touch are usually bothered by being touched by other people. At times, they may feel like scratching or rubbing their skin after someone has touched them. Children who are very sensitive to touch will often misinterpret a friendly tap as a malicious threat and may react by pulling away or fighting back. They may spend a great deal of their school day on guard for these threats. Even a minor draft caused by someone walking by their desk might be enough to set them off. Other less threatening things that bother these children are tags at the back of shirts, seams, elastics, tight clothes or rough textures. Their head and face may seem ultra-sensitive so keeping their face and hair clean can be a losing battle. Oddly enough, children who appear sensitive to touch seem to crave touching things around them. It's as if their bodies need to experience the touch feeling - as long as it's under their control. Another thing that is a surprise is that people who are overly sensitive to touch tend to be under-reactive to pain.

2. Smell
   Children who are quick to pick up smells may not endear themselves to others by their uncensored pronouncements of "What stinks?" They will notice odors that most people would not and may even become nauseous in response to strong smells others might consider pleasant or at least tolerable. Parents have described children to me who cannot walk down the soap and detergent aisle at Safeway because it makes them sick. Some children from rural areas tell me that they can smell the city as they approach Winnipeg.

3. Sound
   Being reactive to sound is mostly a problem at school where there are so many background noises it makes it very difficult to concentrate. Most people can filter these noises out but those with sound sensitivity cannot. In fact, they tend to do the opposite and become all-encompassed by sounds such as the humming of a fluorescent light. They are also likely to be more reactive to sudden or loud noises like a siren or fire bell. Other symptoms of sound sensitivity include difficulties understanding directions or following requests because of an inability to attend to the important information. Similar to those people who are sensitive to touch, those who are sensitive to sound are often described as noisy and seem to enjoy listening to or creating loud music - again, if it's under their control. They also tend to be chatter-boxes. Some researchers have suggested that children who are hyperverbal are using their talk as a way of controlling or shielding auditory input.

4. Vision
   Some people may experience an over-sensitivity to light or visual stimuli. Those who are reactive to light often complain of increased eye-blinking in bright lights and prefer to wear sunglasses or a baseball hat in bright areas. Children who are hypersensitive to visual stimuli tend to become overwhelmed in environments where there is a lot to take in visually - for example, a supermarket. They may also have difficulty with visual tasks such as finding a matching pair of socks in their sock drawer because there is too much other competing visual stimuli.

5. Movement
   The body's accurate perception and interpretation of movement sensations are very important to motor skill development. Problems occur when the body is over or undersensitive to movement sensations. An undersensitivity to movement is most noticeable in children who seem to crave movement. They are the ones that beg to go on all the "worst" rides at carnivals and feel great after. In contrast, children who are overly sensitive to movement will tremble at the very thought of going on such a ride. They may show their insecurity in other ways by avoiding any activities where they are not firmly grounded - for example, climbing a play structure or sitting on top of a large ball. Children who have difficulty processing movement sensations may also appear as klutzy and have awkward postures during sitting, running and walking.

Part II: Sensory Integration

The theory of sensory integration was first developed by an occupational therapist and educational psychologist named Jean Ayres. In simple terms, the theory is based on the belief that persons with sensory and/or motor difficulties do not properly integrate sensory information in their brain. Therapists trained in sensory integration are most concerned about how a person integrates the sensations of touch, movement, and gravity. These sensations are felt to be the most primary sensations of the body as they lay the groundwork for smooth motor control.

According to the theory of sensory integration, a person who is overly sensitive to touch is experiencing difficulty achieving a balance between two different touch systems, the excitatory system and the inhibitory system. When the excitatory system overrides the inhibitory system, a protective or defensive reaction is likely to occur. Behavioral signs of such "tactile dysfunction" may include distractibility, aggression, avoidance or pulling away from touch experiences. Such behaviors may prevent a person from developing the ability to tell fine differences between touch sensations. This, in turn, may lead to delays in motor development.

More complex "sensory integrative deficits" are related to how the body responds to movement and gravity. The body's response to these sensations is handled by the "vestibular system." The vestibular system integrates information from your eyes, a portion of your inner ear, and movement sensors in your joints, muscles and tendons. A person with a sensory integrative dysfunction of the vestibular system may become dizzy more quickly than the average person to rapid or rotary movements. This reaction would indicate that this person is improperly integrating vestibular information causing a hypersensitivity to such movements. Alternatively, a person who is hyposensitive to such movements due to poor vestibular integration would crave this feeling. If your child loves to go on the fastest rides at carnivals with no ill effects afterwards, a hyposensitive vestibular system may be at work.

Other common dysfunctions of the vestibular system are more related to how a person relates to gravity. Climbing playground equipment may be avoided by children who are overly sensitive to changes of position because they feel they are not able to maintain an upright and secure position. Jumping from any height onto the ground may be out of the question. Some children with dysfunctions of the vestibular system may also show primitive motor reflexes more commonly seen in infants, awkward postures or poor muscle tone. These characteristics, again, relate to the body's difficulty with achieving a state of equilibrium and overcoming stronger forces.

Occupational therapists who practice sensory integration theory engage children in activities that attempt to improve the brain's efficiency with integrating sensations. Sensory input is provided in such a way that the child learns to adapt to them. Activities that involve spinning and responding to gravity (for example, balancing on a large ball) are commonly used in sensory integrative therapy. Therapists may also use special techniques such as "skin brushing" to help desensitive children to touch feelings.

Occupational therapists who practice sensory integration should have extra training in neurology and be "S.I. Certified." Some parents swear by the results of sensory integration; others are not as enthusiastic. You should also know that not all the principles of sensory integration have been proven by hard facts and may be considered controversial.

Reprinted with permission from the June 1997 issue of MovemenTS, the newsletter of the Manitoba Society for Tourette Syndrome.

Most occupational therapists trained in sensory integration therapy are in private practice. If you are interested in pursuing sensory integration for your child, call our information line at (206) 781-9035 for names of trained therapists.

SUPPORT GROUPS

The following support group leaders have agreed to accept telephone calls concerning Tourette Syndrome. Although all phone volunteers are well versed in TS, their comments reflect their personal background with TS and do not necessarily reflect the views of the chapter.

Federal Way Support Group
Co-coordinators: Deb Smith (253) 927-3085 (evenings)
                 Zita McLaughlin (253) 939-7268
Date & Time:     3rd Saturday of each month
                 10am - 12pm
Location:        Group Health classroom
                 301 S. 320th, Federal Way
                 Classroom is through a side door adjacent to the main entrance.

Kitsap Peninsula Support Group
Coordinator:     Rhonda Earl (360) 415-0298
Date & Time:     2nd Tuesday of each month
                 7-8pm
Location:        Harrison Hospital
                 2520 Cherry Ave., Bremerton
                 1 SW classroom

Tri-Cities Support Group
Coordinator:     Alores Villanueva (509) 582-9208
Date & Time:     2nd Monday of Jan., Apr., Jul. & Oct.
                 7-9pm
Location:        Neurological Center
                 1091 Gilmore Ave., Richland
This support group is not officially affiliated
with the Tourette Syndrome Association.

Bellingham Support Group
Coordinator:     Nancy Hamilton (360) 647-0239
Date & Time:     3rd Sunday of each month
                 3-5pm
Location:        St. Joseph Hospital
                 2901 Squalicum Parkway, Bellingham
                 Conference room 5

Olympia Support Group
Co-coordinators: Janice Boden (360) 705-0442
                 Chris Hobson (360) 427-8688
Date & Time:     1st Sunday of each month
                 2-4pm
Location:        Capital Medical Center
                 3900 Capital Mall Dr. SW, Olympia
                 1st floor classroom

Spokane Support Group
Coordinator:     Jim Anderson (509) 928-0304
Date & Time:     4th Thursday of each month
                 6:30-8pm
Location:        University Elementary School
                 1613 S. University, Spokane

Seattle Support Group
Co-coordinators: Debi Betts (425) 672-1927
                 Mary Clayton Enderlein enderlin@gte.net
                 Rena Schoenfeld (206) 301-0191
Date & Time:     2nd Tuesday of each month
                 7-9pm
Location:        Call coordinators for new location.


RELATED PROGRAMS

OCD Support Groups
Contact:         Phil Greengus (206) 322-3621
Date & Time:     Every Saturday
                 10am - 12pm
Location:        Swedish Medical Center
                 747 Broadway, Seattle
                 Conference room on level B across from cafeteria
A friends and family support group meets in the same location at the
same time on the first Saturday of the month.  They meet with those
who have OCD for a time and then break into a separate meeting.

A new OCD support group mainly for parents is starting in the
Seattle area.  Call Debbie Meisel at the King County Parent Advocacy
Network  (206) 298-9626 for further details.

Support Group for Parents of Children on the PDD/Autism Continuum
Contact:         Rena Schoenfeld (206) 326-3886
Date & Time:     1st Tuesday of each month
                 6-8pm
Location:        Central Group Health Coop
                 Central South Bldg.
                 125 16th Ave E, Seattle
                 East Room A6 (downstairs next to cafeteria)

CHADD Support Groups
There are a number of CHADD branches throughout the state.  Call Barb
Orchard-Carr of the Northwest CHADD Chapter at (253) 850-2133 for a
location nearest you.  Check out our chapter website for updated listings
of CHADD lectures of interest.

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