| Volume XI, Issue 3 | Fall, 2004 |
Inside this Issue:
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Well, this is the first newsletter we are producing following the retirement of our former Newsletter Editor, Nanette Rosenthal. Although we did not have a new editor in place to work on this issue, the chapter board felt that our newsletter is such an important part of the services we provide that we had to do something. So I am the editor for this issue and since I have never been a newsletter editor before, I apologize in advance for any errors or omissions! Due to some writers block and a little procrastinating (and two busy young children), I am also the reason why this is hitting your mailboxes a little later than when the "September" newsletter should arrive. Anyway, please forgive us if this issue is not up to the usual high standard in which Nanette produced, but we have done our best with our available resources. The good news is that two people have come forward and so we may have more of a long-term solution on the way.
So other than figuring out how to be a newsletter editor for the first time, I've been busy over the summer with chapter planning. I hope you will read my article on our chapter retreat as well as our "year in review." When looking back, I am amazed at how much we accomplished last year and also how true to our plan we stayed. It is very easy to get off course as our attention and energies can shift and wax and wane over the course of a year (much like having TS and TS+ I guess!), but we managed to do most of what we set out to do. This would only have been possible with a very energetic, supportive and committed board. For this I would personally like to thank my board members Bill Zook, Roseanne Torgerson, Carroll Frye, Brad Hawkins, Cori Hartje, Carole Jones, Jaime Biava and Todd Henry who all helped to make 2003/2004 a very full and productive one.
I am very excited about our plan for the next year. Although we will not be having a blockbuster conference as we did this past May, there will be plenty of projects that will focus efforts on supporting the TS, medical and education communities. From the feedback I received on the conference as well as the many calls I take, from adults, parents and professionals involved in the TS community, I understand the significant need for support groups. These allow people to talk and connect, share their stories and also to offer the chance for children to connect with others in the TS community. Hence a focus this year will be on our support groups and I would encourage you if you are reading this and are not located near an existing support group, to consider the idea of starting one in your local area. We will be there to help you through the process. I am working with Kathy Martin right now in getting a new group started in Tacoma, and so with that, the new group in Spokane and the existing groups on the Eastside and Federal Way, that makes four support groups in total for our chapter. Please refer to the Support Group corner in this issue for meeting dates and times. I would like to thank Deb Smith, Zita McLaughlin, Linda Nakasone, Patricia Boesen and Mary Ingram for all their dedicated work and commitment to these vital support groups.
The board has grown this quarter with two new board members Margreet de Leeuw and Margaret Elofson. I would like to thank them both for coming forward and offering to share their time and talent with us and I look forward to working with them. You will see from their introductions in this issue that they each have a unique perspective and excellent skills to offer our chapter. Welcome Margreet and Margaret!
Finally I would like to congratulate Dr. Samuel Zinner on winning the grant from the Center for Diseases control (see article providing the detail in this issue.) It seems that even in the past few years we have made large advances in expanding education and awareness of Tourette Syndrome in Washington state throughout the medical community, the schools and also on Capitol Hill. Adding this very significant study is tremendous news for everyone in the TS community not just here, but nationally as well.
Now the 2004/2005 school year is upon us, I am sure many parents are busy with getting their children settled into school and readjusting to the busy schedules. I hope for everyone that this is a smooth transition, but if you are experiencing problems, don't forget we have a trained school liaison, Cori Hartje, who is a great resource to contact if you need it.
Hopefully for the next issue we will have transitioned the role of newsletter editor on and we will get back to a more regular schedule. Thank you.
We recognize that volunteer work is a commitment and that we all have busy lives, hectic schedules and many demands on our time and energy. But know that by contributing, you would really be helping to make a difference in the lives of so many touched by Tourette Syndrome and its many associated conditions. Even promoting simple awareness can make a tremendous difference to children in school, adults in the work place and for everyone in the general public.
The work is varied and not all geographically bound to any one area. We are flexible about accommodating needs so if you might be interested, we would love to hear from you!
YADA Days: We need volunteers to help run the Tourette Syndrome booth at Youth Awareness of Disability Assemblies (YADA) events. YADA is an educational program that involves creating awareness of a wide variety of disabilities including Tourette Syndrome, among children in elementary schools. Most of the schools so far have been in the Seattle and surrounding areas. Our TS booth aims at helping children understand the symptoms and effects of Tourette Syndrome through a short, interactive talk followed by a fun "Pic a Tic" relay game. The kids love the game and learn a lot, so it's actually quite a fun way to spend the day. Upcoming YADA events are:
Volunteers can work for all or part of the two-day event. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com
Support group facilitator: Right now we have support groups in Federal Way, Eastside, Spokane and a new group starting in Tacoma. If none of these are close to you, help start one in your area. You will get the help you need to get the group organized and you will be able to access a wealth of TS resources including literature, videos etc for your meetings. To make it easier, team up with another parent perhaps, to lighten the work load. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com
Fund raiser: Help plan and implement projects for raising money to allow our chapter to offer our current and expand the types of services and resources it provides. We have plenty of ideas for ways to raise money, we just need someone to organize them. You can offer to do just a one-off fundraising event or take on the role for a longer period. Any money we raise helps, so even small projects can be a good place to start. With our connections to all the other TS chapters across the country, it's quite possible that another state has run your fundraising idea, and if so, they would be a great source for information. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com
School advocate: Be willing to help out parents in IEP meetings or help educate the educators by doing in-service meetings. We would request that you take part in a PAVE training workshop to get expertise regarding federal and state laws concerning special education. You would also have direct support from board member Cori Hartje who is a trained school advocate. Contact Cori Hartje at corih@microsoft.com
Youth activities: Help plan some activities for TS kids in your local area. You would be supported by board member Jaime Biava who has experience working with kids with TS. Contact Jaime Biava at jbiava@u.washington.edu
Info-line volunteer: Be willing to speak with other chapter members to offer support and resources. Right now our Information Line is not currently running. However we would like to start it up again and are looking for volunteers to help share the load by checking messages & responding to them on a rotating basis. Please give this your careful consideration. Often helping someone by just passing on a phone number can have an immediate and positive impact on a families life. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com
Publicity: Help promote our chapter and our services through public relations and marketing. This work would include writing press releases, contacting the media and maintaining networks with other organizations affiliated or related to the Tourette Syndrome community. Contact Bernadette Witty at (206) 780-5361 or Bernadette@thewittyfamily.com
"My tics are better than your tics." That was, for one week in time but forever in memory, our motto. I had never really been to summer camp before. Well, there was that one experience as a resident camper at your typical "scouts" summer camp that I've just about erased from my memory. Thankfully. A good time was not had by all. But that was during one of the dark times in my life when the words "Tourette Syndrome" and "OCD" were not fully understood. I was just "different," in so many ways.
Although I still had a bad taste in my mouth about the possibilities of summer camp, I stumbled upon a website advertising a summer camp in Illinois and became intrigued. When I thought about volunteering as a counselor, a familiar cringe grabbed my stomach. Could I really survive another round of camp? I was skeptical — it looked too good to be true! "The goal of this camp," reads the website, "is to allow children with TS an opportunity to meet other children, share similar experiences and coping mechanisms in a fun, safe and positive environment." I just had to go.
So it was with a sleeping bag, pillow, backpack, and much excitement and anxiety that I made my way to Chicago. When I got there and met with the director and the rest of the camp staff, I knew this was going to be very different from my previous experience. There were more staff than there were registered campers (which proved necessary for everyone's sake!) and all but a couple of us had Tourette Syndrome. The few that did not were intimately connected with the syndrome through friends or family members. It was better than Disneyland... it was Tourette Camp!
Everyon was ticing and no one cared. It took my group of 10 to 12 year old boys some time to comprehend that all of the kids and most of the adults around them had Tourette Syndrome just like them. During breakfast a few days into camp, one of the campers asked quite skeptically, "Do all the people here have Tourette?" Another camper turned to him and gave him a sort of "well, duh" answer, and then shot a quick glance at one of the counselors for reassurance that it was indeed true. Another time one of the boys was sitting with me to calm down after a bit of rage. We were chatting, talking about how he felt, when I told him that I thought I might be able to relate. I described how I used to feel. How I would lose control and how it can be scary and really hard sometimes. He turned to me and asked if I really used to do that. I got to tell him "yes" and watch his face lighted in camaraderie. I was surprised at how I felt at that moment. Never did I think I would feel any sort of pride or confidence about my rage as a child. Sitting there with him, however, it really hit me. I don't want to put words into his mouth, but it sure seemed as though he took comfort in meeting an adult that not only wasn't punishing him for it, but who could also relate. I will never forget that conversation.
Summer camp is a time when you leave your family and friends and meet brand new people. A sort of clean slate for a week or two. It's all about swimming everyday, songs around a campfire, playing capture the flag into the dusk and staying up all night playing flashlight tag on the ceiling of your cabin. It's a place of tie-dye and grass stains, where the people in charge are just big kids and they will listen to the things you have to say. But at our summer camp we also had tics and extra energy and meds and it all fit in quite naturally.
I wish I could describe the amazement and relief that we all shared with each other throughout the week. Of course, we were not without our quarrels and annoyances with each other, but over all, it was incredible. As everyone left, there were nothing but good stories and genuine sad goodbyes between the campers. They seemed to forget about all of the commotion that sometimes came to be and just remembered the fun times when they were just being kids. Not kids with Tourette Syndrome, not kids with OCD, not kids with ADHD, not kids with anything- just kids being kids. I, myself, left camp with a surreal feeling about what I had just been a part of. I had never been in an environment like that before either, and I learned a lot from the campers. I can still rattle off the names of the seven boys in my cabin in less than three seconds and it is with great pride that I wear my staff sweatshirt that they all signed. I heard that the dates for next year's camp session will soon be released, and I can hardly wait!
For more information, check out the camp's website at: http://www.tourettecamp.org
What a fabulous day for picnic! On August 28, 2004 the Board of the Washington State Chapter hosted its annual summer picnic. The site this year was Lincoln Park on Fauntleroy Way SW in West Seattle. About 25 adults and 12 children enjoyed lots of sunshine along with hot dogs, hamburgers and veggie burgers grilled to perfection by Larry Witty. Thanks Larry! And thanks also to all those who brought yummy desserts and salads. The kids participated in games and earned prizes in a talent contest. We saw some great dancing and acrobatics. Thanks for showing your stuff, kids! It was a wonderful occasion to see old friends as well as meet new members and visitors to the group.
Don't forget to reserve Saturday August 27, 2005 for our picnic next summer! You won't want to miss it!
I would like to take the opportunity to look back on the past year and see what we achieved. I think it is very helpful to see how we did against our stated goals and use this information as a tool to help us figure out where and how we should be spending our valuable time and talents. Volunteer work is often tough to juggle in the midst of family life, commitments and busy schedules and I am the first to admit that! So, this is also a good way to stop for a second and recognize the valuable work we have done and to appreciate the way this work has touched the lives of so many people and has so greatly contributed to the awareness and education of Tourette Syndrome throughout our community.
On page 4 are our stated goals for 2003/2004 showing whether they were achieved or not along with a statement providing more details.
I think you will agree we did pretty well. We achieved 18 out of our 24 goals so that is a 75% achievement rate. Not bad for a 100% volunteer effort. This would not have been possible without the tireless work of our chapter board and the volunteers who helped us throughout the year. Thank you so very much and Well Done!
| TS Community | ||
|---|---|---|
| 2003/2004 Goal | Achieved? | Details |
| Continue quarterly newsletter | Yes | This was achieved thanks to our now retired newsletter editor Nanette Rosenthal. Thank you Nanette! You will be a hard act to follow! |
| Hold Fundraising and social activities for the TS community | Yes | We held Bowl-a-thons in Seattle and Spokane, had a summer picnic and started monthly social groups for adults. |
| Promote new membership | No | We encourage readers to join TSA through the newsletter, but we didn't do any direct promotion campaign. We haven't analyzed our membership numbers so we aren't sure of our growth. |
| Ensure all support group meetings are attended by a board member. | Yes | Board members did attend a number of support group meetings in Federal Way and the Eastside. We found this very useful & helpful to understand what is important to our support groups and to generally do a better job connecting with them. |
| Send two board members to the National TSA conference. | Yes | Bernadette Witty and Jaime Biava attended the 2004 National TSA conference in Washington DC in April. (refer to the write-up in the June 2004 Connections) |
| Enhance the chapter website. | Yes | We made a number of improvements although this is an ongoing process. |
| Arrange to have at least one TSA Public Service Announcement aired. | No | We did not have the resources to allocate to this. |
| Improve Public Relations to promote our chapter as well as general awareness of Tourette Syndrome in Washington. | Yes | We made great strides in improving our PR right before our medical conference, thanks to the tireless work of Ellen Broyles and also some great (and very timely) PR training received by Bernadette at the April National conference. Our medical conference appeared in the Health Calendar of the Seattle Times newspaper and an article was published on Tourette Syndrome in the Bainbridge Review on May 22 2004. |
| Promote awareness of designating our local chapter for United Way contributions. | No | This is promoted in our newsletter, but we didn't do any other direct promotion activities on this. |
| Increase Grant applications. | Yes | We successfully secured a grant from Eli Lilly & company for $2000 for the May 2004 medical conference. |
| Increase activities during May awareness month. | Yes | This goal was definitely achieved! In May we held a major medical conference that educated over 265 people (including parents, family, friends and the medical community) on Tourette Syndrome. We also participated in a YADA school event in May as well as other YADA events throughout the 2003/2004 school year. |
| Increase volunteer involvement | Yes | We recruited volunteers to help with the medical conference and recruited three new board members. |
Medical Community | ||
| 2003/2004 Goal | Achieved? | How we did |
| Hold medical conference | Yes | A two-day Medical conference was held May 14 & May 15 2004. This was the largest, in terms of number of speakers, range of topics and number of attendees our chapter has ever held. We co-sponsored the professional day (Friday) with Children's Hospital and Regional Medical Center, which was also the first time we have entered into such a co-sponsorship arrangement. We also held a Children's Program again with record number of attendees. |
| Update and expand Physician referral list | No | Although still in progress, a new list is not ready to be published yet. |
| Distribute Chapter brochure to local physician offices | No | We did not make progress on this. Note: we have learnt that this is a very labor-intensive exercise and often difficult to achieve. |
Education Community | ||
| 2003/2004 Goal | Achieved? | How we did |
| Active participation in YADA days | Yes | We held a TS booth at five YADA events in the 2003/2004 school year.
These events involved 9 full school days of education on Tourette Syndrome. The audience included students, teachers, principals and parents. At an average of 200 people educated per school that makes a total of 1000 people educated! |
| Improved Political and legislative influence | Yes | Bernadette Witty & Jaime Biava went to Capitol Hill and talked to aides of Senators Murray and Cantwell about legislative issues related to Tourette Syndrome. |
| Develop resources for school advocacy | Yes | We have made great advances in this area with the building of a strong library of resources which has been used to deliver in-services to schools throughout the year and also to help parents on an individual basis. We also had our board member Cori Hartje trained as a school advocate. |
| Implement education liaison role | Yes | We appointed our board member Cori Hartje as our Education Liaison point person. |
| Send representative to the Education conference and training session. | Yes | Cori Hartje attended. |
| Distribute information packets to schools | No | We did not make progress on this. Note: However we do leave binders and a video on Tourette Syndrome at all YADA school events. |
| Participate in the Spokane IDEAS conference | Yes | Cori Hartje presented at the conference and helped the local Spokane members to hold a booth. |
| Attend PAVE training in October | Yes | This was attended. Our chapter has good contacts with the PAVE organization. |
| Outreach to other organizations and public services agencies | Yes | Through our public relations activity prior to our May conference and our YADA involvement we have definitely expanded our chapter recognition among other disability and non-profit organizations, schools, corporations and the news media. We recognize that this promotion is an ongoing goal. |
Our chapter board held its annual planning retreat on Saturday, August 21, 2004. The intent of the retreat is to create a specific plan for the upcoming year that details the projects we will pursue. Because we need to be very prudent with how we allocate our valuable resources we take this process very seriously. The first thing we do is to look back at the last year and assess the successfulness of the projects we pursued, look at those that delivered the most value and understand the ones that were too difficult and/or did not return the value against the time spent. We then spent time discussing the needs of the various "communities" we defined last year that include the TS Community (individuals with TS, families, friends and the general public), the Medical Community and the Education Community. Each of these groups have different needs and expectations from our chapter and it is our job to come up with a plan that addresses these varied groups.
So, we did all that and here is what we came up with as our plan for the 2004/2005 year.
TS Community
In addition, as we discussed our ideas and reviewed goals from last year that we could not achieve, we 'parked' these in our "Wish List" and they are as follows:
Managing Obsessive-compulsive Disorder in School-aged Children
Q: How can I help my child with obsessive-compulsive disorder make a smooth transition to school this year?
A: Obsessive-Compulsive Disorder (OCD) occurs with great frequency in children with Tourette Syndrome (TS), and can have tremendous impact on quality of life and functionality at home, at play, and in school. Its management can be complicated. Let's first do a brief primer on obsessions and compulsions, and then we'll talk about management options.
Obsessions are unwanted, repetitive, usually unpleasant and interfering thoughts or ideas or pictures that enter the mind. The thought may relate to contamination, aggression (such as a mental image to stab someone), hoarding (the thought that even mundane items — such as scraps of paper — must be saved), counting (such as the number of stories in any building within view), religion (such as an excessive concern with right and wrong and guilt) or other topic. The thoughts often appear unrealistic or even absurd to the child, yet do not go away. If a child is amused or pleased by the thoughts, then these thoughts are not likely obsessions. They must be troubling, embarrassing or unwanted. At the same time, younger children with OCD may have poor insight about the absurdity of the obsessions because of their undeveloped reasoning skills.
Compulsions are repetitive BEHAVIORS that are committed in response to the obsession in order to reduce the discomfort and anxiety that is caused by the obsession. The compulsion is not goal-directed or rewarding, and it may or may not relate directly or rationally to the irrational obsession. For example, a "rational" compulsion might be seen in a child who has a contamination obsession (such as a feeling that her hands are sticky or dirty despite having washed with soap for 2 minutes) may go back to wash some more. An "irrational" compulsion, on the other hand, may be seen in a child who, for example, must hop up and down ten times on her left foot to reduce the sensation of contamination. Other compulsions may include checking (for example, to see if the door has been locked or the stove turned off), counting, touching something or ordering or arranging or evening up one's possessions (such as shuffling papers until they're entirely even or placed in the dead center of the table). Children will repeat the activity until it feels "just right." One recent patient of mine would re-dress herself with her socks over and over until the seams aligned the "knuckles" on her toes on both feet exactly symmetrically.
Another important distinction to draw is that between OCD and obsessive-compulsive symptoms (OCS) [often referred instead to obsessive-compulsive behaviors (OCB)]. When referred to as OCD, the thoughts (obsessions) and behaviors (compulsions) are distressing and interfering (i.e., may prevent the child from doing what she wants to do, or takes up time that might be spent doing something else); in contrast, in OCS (OCB), the thoughts and behaviors are not significantly interfering. OCS and OCD most likely are one and the same problem, but occur on a spectrum of severity, as is the case for most neurological-developmental challenges.
OCS or OCD occurs frequently as a "co-morbid" (associated) complication of TS. Some estimates peg OCS occurring in 90% of clinically referred children with TS. OCS/OCD is often classified as an anxiety disorder (of which there are several), and its management closely overlaps that of other anxiety disorders.
However, OCS/OCD is sometimes classified as another manifestation of TS (meaning that the brain-based problem that causes tics is identical to the brain-based problem that causes compulsive behaviors), rather than as a co-morbid condition. To understand why, let's look at our current understanding of what is going on in the brain.
Deep within the brain is a center called the "basal ganglia" (BG). We believe that the BG is responsible to organize and filter the billions of darting messages that are constantly being generated by other areas of the brain. A child with TS may have a defect in the BG. As a result, some of the messages are not filtered properly and sneak through. Most adolescent children and adults with TS will describe an unpleasant feeling in their muscles before they have a tic. This unpleasant feeling may be the result of the BG failing to filter it from consciousness. The child has a tic as a way to reduce that unpleasant feeling. The tic is committed by choice, but the unpleasant feeling does not occur by choice. Similarly, a child with OCD has an unpleasant thought. The unpleasant thought (an obsession) is a result of the BG failing to filter it from consciousness. The child commits a compulsive act to reduce that unpleasant thought. The compulsion is committed as a choice, but the unpleasant thought does not occur by choice.
Management of OCD is varied, and options become more complex in older children because of their increased self-awareness and reasoning abilities. In TS, we often find that the more co-morbid conditions a child has, the more likely she is to have still more co-morbid conditions. Increasing the number or severity of co-morbid mental health conditions complicates effective treatment decisions. A common co-morbid complaint in OCD is depression (which is common in other non-OCD anxiety disorders, too). An important message not to forget is that treatment in TS involves focusing on those aspects (tics or otherwise) that are most interfering or distressing. A child with OCS may not require treatment for the symptoms (by definition, non-interfering), whereas a child with the more severe OCD is likely to require intervention. The choice to treat is a personal one. A child with OCD is likely to require treatment for symptoms of depression; in general, it is my opinion that it is more important to treat depression than to treat OCD. Symptoms of depression will interfere with a child's motivation to cooperate with treatment of OCD or other conditions. Fortunately, treatment of depression and of anxiety disorders is often quite similar, getting two birds with the same stone(s).
Psychodynamic approaches in treating OCD in adults usually focus on Cognitive-Behavioral Therapy (CBT). CBT combines two approaches to psychotherapy; the first, "Cognitive Therapy", teaches the child to recognize patterns of thoughts and to determine whether those thoughts are reasonable. "Behavioral Therapy" involves actual homework; the child is given assignments that are practiced "in the field" (at home, school, with family or with friends) when the thought (or before the thought) occurs. In practicing the behavior, the reasonableness of the thought is challenged and, with any luck, the anxiety associated with the obsession is reduced.
Exposure-Response Prevention (ERP) is a type of CBT and involves EXPOSING the obsession to the child, but preventing the child from committing the compulsive RESPONSE to the obsession. The child at first becomes anxious with the exposure but, over time, the customary fear or discomfort associated with the obsessive thought diminishes (hopefully!). For example, a child who compulsively washes her hands because of contamination obsession is increasingly exposed to dirtier and dirtier situations. She may first be exposed, for example, to a photograph of a rotting banana peel, then be exposed to the odor of the peel, then later to the peel itself, and then be asked to touch the peel. She will be urged not to wash her hands until the urge passes.
Information regarding this approach in treating children is limited, although promising. Involving the family in treatment is usually of great benefit. Other behavioral pieces may include anxiety management training as well as additional behavioral approaches and supportive therapy. This comprehensive behavioral approach may enhance treatment compliance and motivation.
Medication options usually first focus on a class known as the SSRI's (Selective Serotonin Reuptake Inhibitors). This class includes the familiar Prozac, as well as 5 others (Zoloft, Paxil, fluvoxamine, Celexa and Lexapro; Anafranil is also often considered to be an SSRI). UNFORTUNATELY, there has been recent reporting about increased suicidal risk in depressed adolescents prescribed SSRI medications, so that the Food and Drug Administration recently determined that a prominent warning label is warranted on SSRIs. The American Academy of Pediatrics endorses this warning. Each family and primary care provider who are considering the use of medication to treat OCD must consider this warning. Currently, there are very many children and adolescents who are safely being treated with SSRI agents. Alternatives to SSRIs do exist, and include benzodiazepines (such as Klonopin) and other anti-anxiety medications.
I often recommend the handbook, Teaching the Tiger — A Handbook for Individuals Involved in the Education of Students with Attention Deficit Disorders, Tourette Syndrome or Obsessive-Compulsive Disorder. This guide, available through Hope Press at www.hopepress.com, (or available for loan from the chapter library) provides direction to teachers and parents to make school an enriching and less threatening environment for children with these disorders.
In addition, the Obsessive-Compulsive Foundation has developed a training module entitled, "Obsessive-Compulsive Disorder in School Age Children", composed of videotapes and reading material available for purchase at www.ocfoundation.org.
I have not personally reviewed their material and cannot guarantee its legitimacy or efficacy.
Dr Samuel Zinner has written the cover story for Contemporary Pediatrics magazine on Tourette Syndrome. It is a 2 part story: "Tourette Syndrome: Much more than the tics, part 1: Diagnosis" and "Tourette Syndrome: Much more than the tics, part 2: Management". This can be viewed online at contemporarypediatrics.com.
This is very significant as this is a major national publication. I would encourage parents to share this information with their own family doctors and pediatricians.
Congratulations Dr Zinner!
Dr. Samuel Zinner at the University of Washington School of Medicine has won a very important grant to examine quality of life in youth ages 11 to 18 with Tourette Syndrome. This was a nationally competitive grant that will help us discover important information about the living experience of people withTourette Syndrome. This study will be the first of its kind in the world to study this aspect of the disorder. Even more exciting news is that this will alsobe the first major TS research studyever in Washington State. This is a rare and excitingopportunity for young members of our chapter to participate in state-of-the-art scientific research! DON'T MISS OUT!!! Your participation is very much needed. More information will follow, so stay tuned. The national TSA and our chapter encourage all eligible families to participate. The grant has been sponsored by the Association of University Centers on Disabilities, through a special provision made by the Centers for Disease Control.
by Todd Erik Henry, JD, MPA, MA, MS, RC
Adults with TS or parents of children with TS are important advocates in promoting the passage of legislation that helps improve the lives of persons with TS. Making a telephone call to a state legislator can be a very helpful advocacy strategy. The time and effort you devote to telephoning legislators can yield even greater results by following helpful hints learned and used on a daily basis by legislative advocates, legislative aides and lobbyists.
Making the Initial Telephone Call
When telephoning your State Senator or State Represen-tative's Office in Olympia, remember that calls are usually answered and screened by a staff member. The phone may be answered by a receptionist, administrative aide or administrative assistant.
Legislators have staff members who are assigned to various policy issues, such as education, health care, mental health and children's services. When you call, make sure to ask to speak with the staff member responsible for the issue you wish to comment about. This may be a legislative coordinator, legislative assistant or administrative assistant. Other job titles are used as well.
If your elected official answers the phone, express your appreciation of being able to talk to her or him directly. If you have the opportunity to speak to your legislator, remember to keep your conversation brief. You want to become a person your legislator welcomes a future call from, not someone she or he will avoid because they cannot get out of the office to go home.
Focus on Only One Topic
Legislative staff and legislators are bombarded with opinions, requests for constituent assistance on the entire array of public policy issues, from mental health to water to health care to transportation to taxes. To assist the person you are talking with to best comprehend and remember your message, focus on one topic. If you try to address multiple issues, your main message and even your telephone call will not stand out from the numerous other calls, letters and e-mails.
Speak in Terms a Lay Person Can Understand
Your message, to be communicated effectively, needs to be shared with many more people. For your message to be effective, a legislative staffer will need to be able to accurately communicate and discuss your message with other staff members in the office, possibly with members of the political party caucus in that legislative house, legislative staff in other offices and other advocates like yourself. This means your message must be easy to write down, remember and say again. Therefore, it is very important to avoid medical, psychiatric, psychological, pharmacological, educational, and legal jargon as much as possible.
Keep Your Message Brief
Ideally, you should be able to communicate your core message in one or two sentences. Additional explanation should take no more than about a minute.
If you want your State Senator to support passage of a senate bill, then when you call the Senator's office, you should say something to the effect of "I urge Senator Smith to vote for S.B. 1234." You should state the title of the bill since there are countless bills introduced each session. In addition, leave your name and town of residence. If asked for a phone number, mailing address or e-mail address, provide that information.
On the other hand, if you are working to get someone to sponsor a bill, your message will naturally be more complex. Nonetheless, the message still needs to be brief–one or two sentences to convey the core message to a lay person.
Be Professional
Be professional in your conversational style, choice of words and tone of voice. Do not complain or make derogatory comments about people or organizations that may be obstacles to the issue for which you are advocating. Instead, stick to the facts. Facts will speak volumes if you present them with professionalism. Professionalism includes presenting information with objectivity. Keep your conversation to about five minutes unless the staff member or legislator continues the conversation further.
Follow-Up
Offer to e-mail, fax or mail written materials. Ask if the person prefers one method of receiving information over another. If the person you are speaking with accepts your offer, then follow-up within 24 to 48 hours.
If you live a reasonable distance from where your legislator lives or you live a reasonable distance from the capitol, say something to the effect that you would be willing to meet with a staff member to discuss your issue in greater detail if they would find that helpful.
Say "Thank You"
Countless people make demands upon their elected officials and their staff. Remember to "thank" the person you speak with on the phone for her or his time.
Become a Resource Your Legislator's Office Will Call
During an initial telephone call, do not bombard someone with lots of information all at once. Legislators and their staff need time to digest and ponder the information you provide them. If you capture the attention of the person you are speaking to about TS or related issues, it is likely they will ask for more information at a future date. Be prepared to give additional information as appropriate to future situations.
By following these helpful hints, you are well on your way to becoming an invaluable resource to your legislator about TS and related issues.
About the Author - Todd Erik Henry is a Legislative Liaison and Board Member of the TSA — Washington Chapter Board of Directors. He resides in Snohomish County. Henry has worked in health and human services policy in Washington State. He often speaks before community groups about legislative advocacy. Henry has been involved in legislative advocacy on health and human services issues at the state level in several states, including California, Minnesota, Wisconsin and Washington. In Minnesota, his activities included serving on U.S. Senator Rod Gram's Rural Health Advisory Committee and a health care workgroup to the Minnesota House Republican Caucus. During the mid 1980s, Henry worked in the field office of a prominent California State Senator. While in college, he served as an intern in the district offices of three members of the U.S. Congress.
If you have questions about the strategies in this article, you are welcome to contact Mr. Henry at (425) 350-3441.
I was born and raised in the Netherlands (or Holland as some people call it) and in my first career I worked as a biomedical research scientist first in aging research and then, after I moved to the USA, in ophthalmology (eye research) at the UW. I met Peter, my husband and the father of our two sons, when he was in Holland working on a fellowship and partly also to connect to his Dutch roots on his father's side.
When we started our family, I took a break from working to stay at home with the children. When Noah, our youngest, started kindergarten I had decided not to go back into research but pursue a second career in education. Noah is now in 5th grade, was last year diagnosed with Tourette, and in September I started working full time as a K - 4 teacher at his school. Nico, our oldest son, is now in 8th grade and aspires to become a baseball pitcher. Peter works down in Federal Way in a specialty area of dentistry called Oral Medicine.
I hope to be able to contribute to the outreach provided by the national TSA and its local chapter as treasurer. The information provided through the local chapter and especially during the spring conference, which coincided with Noah's diagnosis, were very important for our family and through serving on the Board, I hope to be able to contribute and maybe help other families in similar circumstances.
I was born and raised in Yakima and moved to Tacoma to attend college. After college I spent a few years migrating around the country before deciding to land permanently in Tacoma. I went back to school for a law degree and began practicing insurance defense law at a Seattle firm. Shortly thereafter my husband, Dave, and I adopted our son, Will. Fortunately my husband's company transferred us to Canada for a couple years when Will was young and I was able to stay home with him though I am now back at work. I am a judicial clerk to one of the judges at the state supreme court.
Will just turned nine. He started having tics when he was five and was diagnosed at age seven. He very much likes being part of the Tourette's Association group and has had lots of fun at the picnics and at the kids' activities at the recent conference. Dave and I are also enjoying the wonderful people we have met through the Tourette's Association.
Q: What is the Washington Assessment of Student Learning?
A: The Washington Assessment of Student Learning (WASL) is given to most fourth, seventh, and tenth graders in Washington's public schools. It covers the subject areas of reading, writing, mathematics and science. The WASL is given throughout the state during the last two weeks of April and the first week of May. The WASL is not a timed test, but students usually spend several hours a day on the test over a five day period. Parts of the tests are scored by hand by trained professionals.
Q: What's the difference between the WASL and other tests?
A: Both the WASL and traditional achievement tests focus on academic skills. While many tests rely mostly on multiple-choice questions and emphasize basic or foundation skills, the WASL measures the application of those skills to problem solving tasks and real world situations. In addition to multiple choice questions, the WASL requires students to complete short-answer questions, draw graphs, compare and contrast information from multiple texts and write short essays. Educators can use the results of the fourth and seventh grade test to design educational strategies to make the final testing in tenth grade successful.
Q: What is done to address the needs of students with disabilities?
A: The state has compiled a list of accommodations to the WASL available for students with disabilities, including additional time, special testing environments and variable testing formats, such as Braille. Parents with concerns over testing should be proactive with the IEP team several months before the test to ensure that the necessary accommodations are in place.
To address instances where a student cannot fully participate in all or some of the general content areas of the WASL, even with accommodations, the Office of Superintendent of Public Instruction has developed the Washington Alternate Assessment System (WAAS). WAAS measures a student's progress according to their Individualized Education Program (IEP) goals. According to state law, no more than 20 percent of students in a school district can participate in WAAS. It is the responsibility of the student's IEP team to determine the student's participation in the WASL (with or without accommodations) or the WAAS.
Q: Do private schools or home school students have to take the WASL?
A: Private and home-schooled students are exempt from the WASL. However, private and home-schooled students can make arrangements to have students tested using WASL. Contact your local school district or the Washington State Department of Education.
Q: How and when are scores reported?
A: Parents and teachers receive scores for individual students each fall. Scores show student performance relative to a high and fixed standard of achievement and provide information on strengths and weaknesses within each subject.
Q: What is the Certificate of Mastery (CoM)?
A: Students earn the CoM by meeting standards in reading, writing and math standards on the 10th-grade WASL. The class of 2008 will be the first class required to earn the Certificate of Mastery for graduation from high school.
Q: What happens if a student doesn't meet the standard in all of the required areas the first time he or she takes the 10th-grade WASL?
A: In many school districts, a third or more, of the students are not passing all the required portions of the test. The Washington State Senate is now considering a bill, which outlines some important steps to implement the CoM for the class of 2008, including the funding of retakes and an alternative measure for some students.
Resources for this article:
http://www.sbe.wa.gov/faq_pages/WASL.htm
http://www.awsp.org/wpf/faq.htm#WASLAdmin
A new support group will be starting in Tacoma. This will be headed by Kathy Martin who is both a parent of a TS Child and also works within the Tacoma school district. She has a wealth of experience and ideas to share and she is doing a great job in promoting her new group throughout her area. We are excited about this new group and encourage you to attend the meetings if you can.
The first meeting will be held SATURDAY NOVEMBER 13, 2004, from 2:00pm to 4:00pm at the Moore Library, 215 South 56th Street, Tacoma, WA 98408.
Support group Coordinator: Kathy Martin (253) 472-4431 or email martin4431@msn.com.
Federal Way Support Group
Coordinators: Deb Smith (253) 927-3085 (evenings)
Zita McLaughlin (253) 939-7268
Date & Time: 3rd Saturday of each month
10am-12pm (No meeting July & August)
Location: Group Health classroom
301 S.320th, Federal Way
Classroom is through a side door adjacent to the main entrance.
Eastside Support Group
Coordinators: Linda Nakasone (425) 313-0979
Or email nlknakasone@comcast.net
Patricia Boesen (425) 869-2968
Date & Time: Last Saturday of every other month
(Sept., Nov., Jan., March, May)
2pm - 4pm
Location: Redmond Regional Library
15810 NE 85th St., Redmond
Spokane Support Group
Coordinator: Mary Ingram (509) 922-0832
Or email tourettesrus@aimcomm.net
Date & Time: 2nd Tuesday of the following months:
Feb, April, June, August, Oct, Dec
(No Dec. 04 meeting)
6.30pm - 8.00pm
Location: St Luke's Rehabilitation Institute
Lower level Board Room
711 S.Cowley St, Spokane
Tacoma Support Group
Coordinator: Kathy Martin (253) 472-4431
Or email martin4431@msn.com
Date & Time: 2nd Saturday of each month
2pm - 4pm
Location: The Moore Library
215 South 56th Street
Tacoma, WA 98408.
Note the first meeting for this group will be Saturday, November 13, 2004.
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 their chapter website for updated listings of CHADD lectures of interest at www.nw/chadd.org.
Association for Comprehensive NeuroTherapy
The Association for Comprehensive NeuroTherapy exists to give information on alternative or nondrug treatments for the spectrum disorders of TS, ADHD, OCD and autism. They publish a 24 page magazine Latitudes, which is full of useful information from physicians and educators, as well as research reviews. The national TSA has a medical liaison to the organization, and lists the association on the TSA website. Their website is www.latitudes.org.
PAVE
Parents Are Vital in Education. This is our state's parent information center. It exists for parents of children with disabilities to help them understand the state and federal laws that protect our children. They are an excellent resource for questions having to do with special education in the schools. They have six offices throughout the state. Contact them at 1-(800) 5-PARENT, wapave9@washingtonpave.com or www.washingtonpave.org for more information.
Asperger's Support Groups & Newsletter
A support group for parents, caregivers, educators, healthcare professionals and friends of Asperger/HFA/PDD children and young adults meets the second Wednesday of the month from 6:30-8:30pm at the Seattle Children's Home, 2142 10th Ave. W., Seattle. Free childcare is available. Contact Karen Roe 206-782-2232, fismama@qwest.net for more information. To sign up for a monthly email newsletter full of information useful to people along the full range of the autism spectrum (including ADHD), send an email to seattleasnews-subscribe@yahoogroups.com.
Want to get out of the house or away from the office on Thursday nights? Come to the monthly social shindig at Starbucks!
This is intended to be a social event as opposed to a support group, so it won't be formally structured. Just show up, have a cup of coffee or tea, play cards, chat, whatever! And the main part is, get a chance to meet others with TS.
We'll meet the first Thursday of every month at 7:00 pm at the Olive Way Starbucks on Capitol Hill in Seattle. It's located just off of I-5 at 1600 E Olive Way.
There is a parking lot with free parking for customers.
Metro bus numbers 8, 14, & 43 will also take you right there.
Questions? Contact Jaime at (206) 720-7220
Please note: Location may change after a few months. Watch for updates
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