CONNECTIONS

Newsletter of the Washington State Chapter of the Tourette Syndrome Association

Volume IX, Issue 3September, 2002


Chapter Planning Meeting

Please mark on your calendars Saturday, September 28 , from 12:30-3:30pm. At that time we will be holding a planning meeting to get your input for determining the activities, goals and projects our chapter will focus on. It's also a time for you to meet board and other chapter members, and think about ways you might possibly contribute in time and talent. We will meet at the Group Health Central Hospital on its Capitol Hill campus. The address is 125 16th Ave. E., Seattle, conference rooms 1, 2 & 3. Lunch will be served, so please RSVP to Bernadette Witty at (206) 780-5361 or bwitty@qwest.net so we can plan accordingly. Don't let fear of commitment keep you away. We need your ideas too! Our chapter is at a crossroads; for it to continue to operate, we need member input.

Driving directions: I-5 going south, take Stewart St. exit. Go left on Denny, then left on Olive.

I-5 going north, take Olive St. exit.Either direction, Olive will become E. John St. Take it to 15th Ave. E.


National Conference Coming

TSA is holding its biennial national conference October 31 through November 3 at the Hilton Alexandria Hotel in Alexandria, Virginia.
This is a wonderful opportunity to attend workshops and seminars, learn about the latest in treatment, research, advocacy, education issues and more. You will be able to meet leading TS researchers and clinicians and socialize with parents, children and adults with TS from all over the country and the world.
This year, national is offering a youth program for children ages 8 to 15 whose parents are members of TSA and who are enrolled as attendees at the general session of the conference. Alexandria's Parks Department is coordinating the program, which will be based at the retreat area of the hotel. Activities include swimming, crafts, outdoor sports and games, movies and trips into Washington, DC. For more information on registering, call TSA at (718) 224-2999 or visit their website at www.tsa-usa.org.

Volunteer Corner

In response to our appeal for volunteers in the last issue of Connections, we now have two new volunteers who will be assisting our chapter. Thank you Kim Gorman and Stephanie Lee ! Kim lives in Maple Valley and will be taking over the chapter mailing list and sending out informational packets to new chapter members. Stephanie lives on Vashon Island and will be administering our physician referral list, soliciting potential new names of physicians and psychologists, and working with the national TSA to get them added to our state referral list. We're very pleased to see these two jobs taken on by Kim and Stephanie because they are essential to keeping our chapter functioning. There are still other volunteer jobs we would love to see filled. Please take a moment to read the descriptions below and see if you would be willing to help us out. The contact information for Roseanne Torgerson is (206) 322-4754 or rtorgerson@cortland.com; for Nanette Rosenthal it's (206) 367-4491 or TSAWASH@aol.com.

Board Members - We are in need of a number of new board members to help us plan our chapter's goals and various activities. We currently meet the first Tuesday of each month (Sept-June) at Valley Medical Center in Renton from approximately 7-9pm. The date and location could be changed depending on the group of board members we have. Besides the two hour commitment each month, board members can take on other responsibilities as they are able and interested. Contact Roseanne Torgerson.

Secretary - This is a board position. Responsibilities would include attending board meetings and typing up minutes to distribute to board members (about four hours each month). Contact Roseanne Torgerson.

Conference Planner - This could be a board position if desired. We are very close to having the plans in place for the medical conference we had to cancel this spring. However, if we don't have a conference planner to make contact calls with the speakers and be a liaison with the conference facility, we will not be able to hold the conference. Many of the tasks involved in this could be delegated to other volunteers such as making name tags, ordering food, writing up the brochure, and handling registration, but someone needs to be the main point person to do tie it all together. Contact Roseanne Torgerson.

YADA Days - We need volunteers to work at activity booths or give very short presentations for Youth Awareness Disability Assemblies being held at Seattle elementary schools. TS is represented along with a number of other disabilities. Planned dates so far are: 10/7-8/02 at BF Day, 11/14-15/02 at Kimball, 12/5-6/02 at Arbor Heights, 2/19-20/03 at Coe and 4/24-25/03 at High Point. Volunteers can work for all or part of the two-day event. Contact Roseanne Torgerson.

Lending library - We have a lending librarian currently, but we need to have someone who is willing to watch for types of books or videos that would be useful for the library, and then make those purchases with money that has been allocated from our chapter budget each year. This person should also update the index we have to the library each time new material is needed, and then forward the new material to our librarian. Occasionally when there are TV shows that feature TS, the person would tape the show for inclusion in the library. This job would probably take only about an hour a month, and the person could live anywhere in the state. Contact Nanette Rosenthal.

Support groups - Occasionally when people throughout the state volunteer to lead a support group, there needs to be a person who will give advice on how it should be set up, show the leader how to affiliate their group with our chapter and with TSA, send out invitations to the first support group meeting, provide a mailing list of people in our chapter that live in that geographical area, and then be a contact and support person for the support group leader. The amount of time this would take depends on how many support groups are active or about to be started. Currently that number is very small. The person could live anywhere in the state. Contact Nanette Rosenthal.

Bowl-a-thon or other fundraiser - In order to keep our chapter functioning, we need to raise money! Anyone who is willing to plan either another bowl-a-thon or some different type(s) of fundraiser(s) is necessary to keep us moving forward with our goals. Fundraisers can be planned in any part of the state and will take varying degrees of involvement depending on the type of fundraiser. Contact Roseanne Torgerson.

IDEAS Conference - For the last three years we have had an informational booth at the special education IDEAS Conference in Spokane at the end of January. Someone is needed to fill out the paperwork with the conference presenters to enable us to have an exhibit there, order publications to disseminate and find volunteers to work at the booth. Work for this takes place between September and January each year and takes about three hours a month. It could be done by anyone in the state. Contact Nanette Rosenthal.

Newsletter - The newsletter is published four times a year. It takes about ten to twelve hours a month to gather materials of interest for inclusion, write articles or solicit others to write them, edit articles, put them in newsletter format (I use Publisher, but Pagemaker could also be used), take to the printer and then to the post office. Contact Nanette Rosenthal.


Goodbye Meg

Meg Howard-Petosa, who has been a fixture on our chapter board for the last six years, stepped down as of June 2002. As an adult with TS, she has offered her own unique perspective to the board's many discussions and decisions. She has staffed the chapter's phone info-line this whole time, planned children's activities for several of our conferences, designed our chapter's t-shirt and had it produced, and provided assistance for numerous other projects that we have undertaken. As the many people who have gotten advice, support and information from Meg will be glad to hear, she will continue to answer the chapter's info-line, but is giving up her other board duties. The board will miss her hard work ethic and great sense of humor. We appreciate all that she has given our chapter over these years!

Chapter Donations

We'd like to thank the following people/organizations who have contributed to our chapter in the past three months:

Patrick Friel - in memory of Stephanie Friel

The Sarkowsky Foundation

SCHOOL NEWS

Public vs. Private - What Do You Need to Know?

Editor's Note: One of the most important choices parents must make for their child with TS is whether to enroll him/her in public or private school. Of course home schooling is also an option. We discussed that at length in the March 2000 issue of Connections (see back issues on our web site www.tourette.net/wa). This time we are discussing what parents should keep in mind as they try to decide between public and private, and what they might expect once their child is enrolled. The first part of this article is an interview with Melyssa Higgins, Ph.D. Dr. Higgins is a licensed psychologist and educational consultant who specializes in the diagnosis and treatment of learning difficulties. She is part of a multidisciplinary group practice located in the Seattle area.

What are the ramifications to a student with disabilities enrolled in a private setting to not having the protection of IDEA (Individuals with Disabilities Education Act)?

Essentially, IDEA mandates that public schools provide an "appropriate" education for all students. Practically speaking, this means that public schools need to be equipped to provide at least three basic services to students who are suspected of having a disability.
First, they must have a team of professionals who can evaluate the student to determine whether a disability exists and, if so, in what area(s).
Second, they must design an educational plan that is appropriate for the students needs. Specifically, they need to outline the type of instruction that the child will receive that is different from the general education program. This is the umbrella under which the terms special education services, IEP plans, and resource room instruction fall. It's important to understand that a public school is not required to provide an optimal or ideal educational program for students with disabilities. For example, they are not required to purchase specific materials that a parent or tutor might request. Basically, it means that a student must receive instruction and assignments geared towards his/her instructional level. (In other words, a learning disabled sixth-grader might need instruction and practice with reading skills that are normally covered during third grade).
Third, they are required to monitor the student's progress to ensure that the educational plan is working. Typically, the special education teacher is responsible for monitoring the day-to-day instructional plan, and the school psychologist is responsible for periodic re-evaluations of the disability and documentation of progress to date.
Private schools are not required to provide any of these services. Nonetheless, many private schools have a learning specialist on staff who provides extra instruction to students with learning difficulties (similar to the resource room instruction that the child might receive at their local public school). However, there could be an extra charge for these services. Also, the focus is usually on academic skills (e.g. reading, written language, and math). It is uncommon for private schools to provide occupational therapy or speech therapy.

What types of services can parents ask for or expect in private schools? For example, if the child has fine or gross motor skills deficits, can the parent ask for OT/PT services in a private school? Would the school be required to provide them, or would the services be available at the public school even if the child was enrolled in private school?

Parents can ask for accommodations for their child. Although private schools are not required to provide the services mandated by IDEA, they are required to abide by Section 504 of the Rehabilitation Act of 1973, which is a civil rights statute. Section 504 requires that persons with disabilities receive accommodations for their disability so that they can fully participate in major life activities (such as learning). Practically speaking, this means that you can ask the private school to make minor modifications to your child's classroom/program that help to minimize the impact of their disability. Typically, an accommodation is something that does not cost the school any money to provide. For example, seating a student with attentional difficulties in the front of the class or allowing them to have extended time for tests would be an accommodation. In order to be eligible for Section 504 accommodations, there needs to be documentation of the disability and a rationale for the accommodations that are being requested. Since the private school is not required to offer evaluations to verify disabilities, the parents might need to pursue an evaluation on their own (either through a private clinician or their local public school).
If a student has learning needs that cannot be addressed through the private school, he/she can still access these services through his/her local public school. However, this might require the student to travel from their private school to their neighborhood public school in order to obtain the services (e.g. occupational therapy, speech therapy, resource room instruction, etc.).

Parents often like the small class sizes and more individual attention that private schools can give. This can be very important for a child with special needs. Yet if the child's needs are beyond the capabilities of the school, they are not required to accept the child or can ask for him/her to leave. What criteria should parents use to make the decision if a private school would be better than public for their child?

Several factors should be considered. The first issue has to do with the student's scholastic skills. Academic expectations are often higher in private school programs compared to public school programs. The curriculum might move along at a faster pace, and the student might be required to complete more homework than in public school. If the student is transferring to a private school midway through the program, they might not have learned some of the skills that their private school classmates have already mastered. So, the first question should be about whether the child is a good match for the private school from an academic skills perspective.
The second issue has to do with the kind of services your child needs. If your child needs many different types of services (e.g. occupational therapy, speech therapy, etc.) then those services might need to be located outside of the school. This can mean additional financial obligations, more frequent after-school appointments, and/or disruptions to the student's school day (i.e. if they need to be transported to their public school).
Third, what type of services does the private school offer, and how do they compare to what the student would receive in public school? In some cases, the student might actually receive more learning assistance in the private school than they would in the public school. For instance, the student might be able to work one-on-one with the learning specialist at the private school, but in a group of five students at the public school. Likewise, the student might be able to work with the learning specialist for five hours per week at the private school but only 90 minutes per week at the public school.
Fourth, what is the school's mission? What kinds of students are they selecting? This is important for estimating the potential for long-term success in the private setting. If you have a child with attention, behavior, handwriting, and/or work completion difficulties then you want to find out about the school's policy on these issues. What kinds of accommodations do they typically provide?

What resources are available to parents in helping them make the decision of public vs. private?

An educational psychologist or educational consultant can help parents learn about school options in their area. They can also evaluate a student's learning needs and help parents weigh the pros and cons of public versus private education. Oftentimes, your child's pediatrician can refer you to a knowledgeable and experienced educational consultant.

If you would like to contact Dr. Higgins please visit www.abcdseattle.com or call (206) 361-6884.


Choosing a Middle School for Your TS Child

by Carole Jones and Anita Lehmann

Editor's Note: Next, two of our chapter members give their experiences of choosing an appropriate middle school for their sons as they debate whether to go with a public or private school.

Finding the best possible school environment for our children is always a challenge. During the middle school years - when many children's TS symptoms increase and change unpredictably - the challenge grows even more formidable. As parents of an 8th grader and a 7th grader we have both learned a lot in the past two years about what to consider and what to expect in selecting a middle school. We have looked at public and private schools, large and small. Although we live in the same neighborhood, we have made different choices for our kids. Taken together, our experiences reflect a range of factors and possibilities you may want to think about as you search for the right middle school for your child.

The goal for our sons
Carole's son, Ben, loves science and art and has made steady academic progress despite some learning disabilities. Anita's son, Andrew, is athletic and artistic and works hard to maintain good grades in his school's honors program. In terms of middle schools we both want the same things for our sons - a place where they can receive a good, solid education and where they will feel happy and accepted by their teachers and peers.

The search
Because of Andrew's age, his medications and the unpredictability of his condition, Anita and her husband felt that one of the most important issues in choosing a middle school was proximity. Although she and Andrew attended three private school open houses and were very attracted to one school in particular, financial considerations eliminated that option. In the end, the family chose the neighborhood middle school, just five minutes from home.
Ben attended a private elementary school for children with learning disabilities. It was a nurturing environment where his tics were accepted as part of who he was. Because of the specialty nature of the school, Ben received needed occupational therapy for handwriting and motor skills there, rather than having to get the services at a public school or with a private therapist. His parents did, however, engage private tutoring for him outside the classroom at their own expense. For middle school Carole and her husband thought Ben would be more challenged in a mainstream program. After an exhaustive search, school visits and application process, they settled on a small, private middle school that they hoped would provide the same type of supportive atmosphere Ben was used to.
As with many TS children entering puberty, Andrew and Ben both began during their middle school years to experience more severe tics and other symptoms including obsessive/compulsive disorder. The families needed to adjust medications and coordinate with the schools on a regular basis.

Andrew's school
Since 4th grade, Andrew has possessed a 504 plan from Seattle Public Schools. This plan outlines a student's condition and describes what accommodations to class- and homework and/or what modifications to the classroom environment should be put in place to help the student succeed in school. Andrew has used a 504 plan to allow him extra time for test taking and homework assignments, and to enable him to leave the room when his tics become bothersome. The 504 can be updated on an ongoing basis. The school district has never suggested that Andrew be tested to see if he qualifies for special education services, and his parents have been satisfied with having a 504 plan only. He has not needed the help of an OT/PT or speech therapist.
At the beginning of the school year, Anita and her husband made presentations to the staff and Andrew's classmates to tell them about TS and how Andrew copes with it. Generally it has been up to Andrew's parents to make the teachers aware of his 504 plan. Some teachers have been better able than others to adjust to Andrew's needs, but they all work to provide the accommodations outlined in the 504. Anita is a strong advocate for her son, meeting with teachers at least two times a week. The school counselor maintains an "open door" policy for Andrew. Among Andrew's friends are one or two youngsters who are ready to lend a hand whenever classroom stresses seem to be affecting his tics.
Because of his medications, Andrew has sometimes struggled to get through an entire school day. Completing homework assignments has exhausted both him and his parents. But, by giving up some extracurricular activities and by keeping his teachers informed of changes in his situation, Andrew has successfully completed 7th grade. At the end of the year Anita met with Andrew's teacher to discuss how he had progressed over the year and what might help him in 8th grade. On his teacher's advice Andrew is taking typing lessons to make it easier for him to produce assignments. It is possible that had Andrew been tested to see if he qualifies for special education services, he could have been eligible for keyboarding training given during the school day at the school's expense. On an IEP or a 504 plan he could also request assistive technology in the form of an AlphaSmart laptop word processor to help with notetaking during class or request that a peer or the teachers provide him with notes. Andrew is looking forward to next year at the same school.

Ben's school
Just as Anita and her husband did, Carole laid the groundwork for Ben's entry into a new school. She and her husband met with the staff, provided written materials and a video on TS and arranged to have Ben's advisor help Ben explain his TS to the other students. Behavioral difficulties he had had in elementary school were noted in school transcripts that were passed on to the middle school. Although private schools are required to abide by 504 plans in the same way that public schools are, Ben did not come to his middle school with such a formal plan in place. Since Ben's elementary school was specifically for children with learning disabilities, it had always been very accommodating to each child's special needs, and Carole and her husband hadn't felt the need to specifically set up a 504 plan. In hindsight, Carole wishes she had set up such a formal plan with the new middle school. Despite the planning and ongoing communication between the school and the family, after a few weeks it became clear that Ben's tics and ADHD symptoms could not be accommodated within the school's class model. They were given only one day's notice that Ben was no longer welcome at the school. They were also obligated to pay for the full year's tuition even though it was very early in the school year. Ben eventually returned to the school he had attended in 5th grade.
Although Ben felt more comfortable being back in his old program, his behavior issues persisted and the staff, along with Carole and her husband, concluded that Ben should have a "teacher's aide" to shadow him throughout the day, monitoring his behavior in the classroom and making sure he got his assignments turned in. The school helped Ben's parents locate a suitable aide and integrated the aide into the classroom with no problems, although it should be noted that the aide was paid for by Ben's parents. Although this system functioned moderately well and allowed Ben to work on more challenging assignments given to him by his aide, Carole and her husband decided that they would try something new for 7th and 8th grade. Next year Ben will be in a home-schooling situation led by a private tutor. This will divert attention from classroom behavior issues, giving Ben the chance to develop his own expertise and interests.
Each of us has learned there is no roadmap to indicate for certain which middle school will work the best for our child, just as there is no way to predict how TS will manifest itself from one day to the next. The checklist accompanying this article simply contains what we have discovered is important for our children and our families. As you accompany your child along the path through adolescence and middle school, no doubt you will find many other points to add to the list.

Points to consider:

The individual needs of your child

Finding a school

Is it the right school for your child? Once the decision is made
College Board Announces Agreement to Drop Flagging from Standardized Tests
As of October 1, 2003 the College Board will discontinue the practice of identifying score reports on standardized tests taken by students who require extended test-taking time due to documented disabilities. Such special testing accommodations have been identified on the score report by the words "nonstandard administration," a practice commonly referred to as "flagging."
The decision to discontinue flagging stems from a 1999 lawsuit against the Educational Testing Service (ETS) that resulted in ETS's agreement to remove all flags from the score reports of ETS-administered tests that are not owned by the College Board. ETS develops the test items, and administers and scores the SAT and several other tests owned by the College Board.
With respect to College Board tests, the College Board had agreed to convene a Blue Ribbon Panel of jointly selected experts to consider issues related to the flagging of score reports. That panel recommended,by a vote of four to two, that the College Board discontinue flagging the score reports of tests taken with extended time.
The College Board president expressed concerns raised by guidance counselors and admissions directors that a rigorous review process be upheld to ensure that extended test-taking time not be granted to students who don't require the accommodation. To that end, the College Board will continue its process of routine documentation reviews. These reviews ensure that the eligibility requirements are being consistently and fairly applied to all students. Additionally, the College Board will continue to improve its communication of expectations to ensure equity of access for all test-takers.

LEGISLATIVE UPDATE

by Jai Kelly

This month will begin a very busy and hopefully productive time for the U.S. Senate and House of Representatives. After the summer recess, both Houses will begin work on legislation which is very important to us. They are described below.

MENTAL HEALTH PARITY
Two identical bills have been introduced in the Senate (SB543) and the House (HR4066). These bills would provide coverage of mental health benefits which is equal to the insurance benefits offered for other medical conditions. In other words, if an employer's insurance plan covers 80% of the cost of a visit to a physician's office, they would also be required to cover 80% of the cost of a visit to a mental health provider. This type of legislation is already in effect in several states, and studies have shown that the fear of greatly increased health care or premium costs are unfounded. The increased costs are very minimal, averaging about 1.4%, or $1.32 per month.
During previous sessions of Congress, these bills were not allowed to come up for a vote by Republican committees. This should not a problem in the Democratically controlled Senate, but may be prove to be difficult in the House of Representatives where Republicans head the committees with jurisdiction over mental health parity in the House.
According to Rep. Patrick Kennedy's web site, "A bipartisan majority in the House supports the Roukema-Kennedy bill, but committee chairmen have the power in most cases to bottle up even popularlegislation. In the nine years since the first parity bill was introduced, no such bill has ever received a hearing in the House." However, House Majority Leader Dick Armey (R-TX), who has opposed the legislation, may be considering it, given President Bush's interest, said Armey's spokesman, Terry Holt. "He is willing to look at the president's ideas on the issue, but like every other aspect of government, you're going to have to set priorities," Holt said.
So this appears to be our best chance yet to finally get mental health parity legislation passed. Your representatives will be back from the summer legislative recess the day following Labor Day. The National Mental Health Association, http://www.nmha.org/index.cfm, has set up a toll free parity hotline where you can contact members of the House of Representatives: 866-Parity4 (866-727-4894). Or you can call the House of Representatives switchboard directly at: (202) 225-3121 (this is a toll call). You can reach Senator Maria Cantwell at 1-888-648-7328 and Senator Patty Murray at (202) 224-2621.

IDEA
The other major concern this session is the reauthorization of the Individuals with Disabilities Education Act. This is the federal legislation which provides for the Free and Appropriate Public Education for children with disabilities. It is the basis for most special education programs and accommodations found in schools today. The IDEA is made up of four parts. Part A is the General Provisions section, Part B is the Grants to States Program (including preschool grants), Part C is the Infants and Toddlers Program, and Part D provides for Support Programs. Part B is permanently authorized. Congress periodically reviews and reauthorizes Parts C and D of IDEA (usually every 5 years) in order to determine if the programs are still necessary or if changes are needed. That is the theory. In reality, Congress can review, change or simply end any program it wishes to at any time. And since Parts A and C of IDEA are up for review, the President and members of Congress are using this as an opportunity to review and possibly eliminate the most fundamental provisions and protections of the Act.
In 2001, President Bush ordered the creation of the President's Commission on Excellence in Special Education. The purpose of the commission was to review all aspects of IDEA and make recommendations on how to improve special education in the United States. The commission's report was released on July 9. Both House and Senate Committees are holding hearings on IDEA reauthorization.
Among the more controversial proposals are:School Vouchers: The President's Committee recommended that parents have a "choice" in deciding where to send their children to school, specifically through the use of special education vouchers for private schools. Many fear that private schools will only accept students whose special education costs are minimal, while leaving the public schools to pay for the more expensive accommodations.
Discipline: Although the commission did not report any problems with the current disciplinary provisions of IDEA, certain legislators have manufactured a controversy over the protections afforded disabled students when being disciplined for behavior which is determined to be related to their disability. This includes both Democrat and Republican representatives. At this time, it is unclear where Senator Patty Murray, who is on the Senate's IDEA Committee stands on this issue. There is a misconception that schools are unable to effectively discipline disabled students. In reality, a report by the General Accounting Office reported that students with disabilities are disciplined in the same manner as their fellow students.
According to the national TSA, as Congress reauthorizes IDEA this year, discipline issues will be a top priority. Several of the amendments that are being considered would significantly increase the likelihood of suspensions from school for students with Tourette Syndrome. If these amendments are approved, students with disabilities of all ages could be suspended for "dangerous behaviors" and it is possible that they would be prevented from receiving educational services for the duration of the suspension, regardless of the length. The definition for "dangerous behavior" is vague and can include behaviors that are symptoms and do not present a threat to anyone. "Everyone is concerned with school safety, including parents and educators," said Judit Ungar, president of the Tourette Syndrome Association. "However, removing children and providing no services because of a vocalization, physical tic, an obsessive-compulsive behavior or impulsive remark will not make schools safer and certainly will not benefit students or society."
The cessation of educational and psychological/behavioral support services is especially troubling. Ending the supports provided for a troubled student as a means of discipline is counterproductive. In the rare cases when a student may pose a threat, there are already provisions to remove them immediately for up to 10 days, during which time a meeting will be held to determine if long term suspension is necessary. Positive behavioral supports are also implemented in an effort to address the needs of the student. These services can be provided off school grounds for as long as is deemed necessary. Unfortunately, as part of rewriting the disciplinary provisions of IDEA, these safeguards may be lost.
The President's Committee also failed to recommend that IDEA be fully funded. Under the original provisions of the Act, the federal government was supposed to fund 40% of the cost of special education services. So far, Congress has not even come close to fulfilling that promise. The maximum funding provided so far has been 17%, with the states and local school districts being forced to pick up the remainder of the costs. It is this lack of funding which has caused much of the conflict between schools facing tight budgets and parents trying to get the services their child needs.
On the plus side, there have been proposals to increase funding for early intervention programs and for training programs for teachers of special needs students. Most teachers report that they do not feel they have the training and support needed to best help special education students. There is also a call to reduce the amount of paperwork teachers must fill out and to simplify the special education process.
These are just a few of the proposals in regard to IDEA being discussed. You can contact the House Education Reform Subcommittee at IDEA@mail.house.gov or (202) 225-4527 to insure your views of what is best for your child are heard.


NEWS YOU CAN USE

Anti-Psychotic Drug Linked to Diabetes
As reported in the 7/1/02 issue of the medical journal Pharmacotherapy, 23 deaths via a serious diabetic condition have been linked to the drug olanzapine (sold as Zyprexa). The drug was also linked to at least 225 reports of diabetic side effects which were not fatal. Diabetic conditions usually appeared within six months of the drug's use and were accompanied by weight gain. The findings do not prove a cause and effect relationship between the drug and side effects, but the Food and Drug Administration is looking further into the drug.

Condensed from USA Today article, 7/2/02.

Asperger's Support Group & Book
A new Asperger parent support group is forming in Kitsap County. For more information, contact Laurel Pardee at (360) 830-2484. There is also a new book out entitled A Parent's Guide to Asperger Syndrome and High Functioning Autism. It is written by Sally Ozonoff of the University of California, and Geraldine Dawson and James McPartland, both of the University of Washington's Autism Center. The book is designed to be a road map to help parents of children with high-functioning autism and Aperger syndrome through trying times, starting with diagnosis and progressing through childhood and into adulthood.

Recent Scientific Articles
Below is a listing of some recent scientific articles on TS and related disorders. In you are interested in receiving a copy, check with your local medical library or search online at PubMed.

Treatment of ADHD in Child with Tics: A Randomized Controlled Trial
The Tourette's Syndrome Study Group
Neurology: 58 Feb 2002 527-536

Tourette Syndrome and Related Tic Disorders
Neal R. Swerdlow, James R. Leckman
Neuropsychopharmacology: The Fifth Generation of Progress,
Chapter 117, 1685-1698

Mirtzapine Treatment of Obsessive-Compulsive Disorder
L.M. Koran, T. Quirk, J.P. Lorberbaum, M. Elliott
J Clin Psychopharmacol, vol. 21:5 537-539, Oct. 2001

Does Transcranial Magnetic Stimulation (TMS) Over Motor or Prefrontal Cortex Modify Tics in Patients with Tourette's Syndrome? A Pilot Study
J.H. Chae, N.C. Oliver, Z. Nahas, X. Li, B. Benjamin, F.R. Sallee, M.S. George
Biol Psychiatry 2001;49: 1S-176S (1135)

Methlyphenidate to Treat ADHD is Not Contraindicated in Children with Tics (Editorial)
Roger Kurlan
Movement Disorders Vol. 17, No. 1, 2002, pp 5-6

Actigraphy and Parental Ratings of Sleep in Children with Attention-Definit/Hyperactivity Disorder
P. Corkum, R. Tannock, H. Moldofsky, S. Hogg-Johnson, T. Humphries
SLEEP, Vol. 24, No. 3, 2001, pp 303-312

The Prevalence of Tourette Syndrome in 13-14 Year Olds in Mainstream Schools
H. Hornsey, S. Banerjee, H. Zeitlin, M. Robertson
J. Child Psychology and Psychiatry Vol. 42, No. 8, pp 1035-1039, 2001

Taken from Tourette Syndrome Association Newsletter, Summer 2002.


2002 Funded Research Proposals

Below are some of the proposals which have been funded this year to do research in the area of Tourette Syndrome. When you contribute to the national Tourette Syndrome Association, you are helping fund these very important studies to help us understand the causes and treatment of TS and associated disorders.

Neurophysiologic Basis of Disease Onset and Symptom Severity in Persons with Tourette Syndrome: A Study Using Transcranial Magnetic Stimulation
Awarded to Donald L. Gilbert, M.D. from Children's Hospital, Cincinnati, OH.

The Molecular Diagnosis of Streptococcal Infection in Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Tourette Syndrome
Awarded to Gavin Giovannoni, Ph.D. from the Institute of Neurology, University College, London

A Pilot Study of Metoclopramide in the Treatment of Tourette Syndrome and Chronic Tic Disorders
Awarded to Rob Nicolson, M.D., from Children's Hospital of Western Ontario, Canada

Investigation of Neural Mechanism in the Basal Ganglia and Prefrontal Cortex Underlying the Acquisition of Behavior-Guiding Rules
Awarded to Anitha Pasupathy, Ph.D., Department of Brain and Cognitive Sciences, MIT, Cambridge, MA

A Family Genetic Study of Children and Adolescents with TS and OCD
Awarded to Maria C. Rosario-Campos, M.D., M.Sc. from Yale Child Study Center, New Haven, CT

Motor System Excitability in Tourette Syndrome: Developmental Aspects and Comorbid Obsessive-Compulsive Disorder
Awarded to Drs. A. Rothenberger, G.H. Moll and H. Heinrich from the University of Gottingen, Gottingen, Germany

Taken from the Tourette Syndrome Assoc. Newsletter, Summer 2002.


UPCOMING PROGRAMS

ADHD Seminar
Dr. Daniel Amen, a national authority on ADHD is giving three seminars this month. They are sponsored by ADD Resources, PAVE, the University of Washington, and the Learning Disabilities Assoc. His talks will focus on what ADHD is and is not, how it impacts people in their daily functioning; what the most effective treatments for ADHD are, including medications and alternative treatments; and what the most effective behavioral strategies are.

1. Lecture (open to the public)
Holistic Healing of ADD
Thursday, Sept. 26; 7-9pm
Kane Hall
University of WA, Seattle
$10 advance; $15 at door

2. Seminar (intended for professionals with clock hours and CEU's offered)
Holistic Healing of ADD
Friday, September 27; 8:30am-3pm
Kane Hall
University of WA, Seattle
$30 advance; $45 at door

3. Repeat of seminar
Holistic Healing of ADD
Saturday, September 28; 8:30am-3pm
Wilson High School, Tacoma
$30 advance; $45 at door


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