CONNECTIONS

CHAPTER NEWS

We'll be holding our second annual bowl-a-thon fund raiser on Sunday, April 9. We had so much fun last year, we decided to do it again this year! For our first attempt last year, we raised $1300, a great start. We hope to do even better this time around. We'll be offering prizes at each bowling alley as a way to encourage participation. There will also be a fantastic grand prize package of a weekend in Seattle which includes a night's stay at the Seattle Hilton (breakfast included), dinner for two at Palomino Restaurant in the City Centre building, and two movie tickets from General Cinemas in the Pacific Place building. We'll award this package to the person turning in a donation form with the highest dollar amount. Last year's bowlers enjoyed the opportunity to participate in a fun family activity as well as meeting other people with TS and making new friends.

Although we'd love to see a lot of people come to bowl (whether you've collected donations or not), if you can't make it, we'd still appreciate your financial support. This is our one major fund raiser of the year. The money we raise supports our chapter in many ways: to purchase and mail informational materials to chapter members and professionals, to add videos and books to our lending library, to fund five support groups in the state, to publish this quarterly newsletter, and to plan a major educational conference this fall. So, if you live far from one of the bowling sites, please consider making a direct contribution to TSA-Washington. You can also request a donation form and collect donations from friends and family even if you're not bowling. It doesn't matter how you participate, just that you do! Refer to the enclosed brochure for details about bowling times and locations and where you may send your direct donations. You must pre-register to bowl.

Annual Conference 2000

We Couldn't Do It Without You!

I.D.E.A.S. Conference - On January 27 and 28, the I.D.E.A.S. conference was held in Spokane. This annual conference on special education is sponsored by Educational School District 101 and attracts regular and special education teachers, other education professionals and parents from across the state. Over 1,200 people attended. Special thanks go to Gail and Jim Anderson who staffed a TSA table, handing out materials and answering questions about TS. It was a great way to give information to the educators who work with our children.

Public Service Announcements - Thanks go to Jean Conklin from Oregon who has funded the airing of a public service announcement regarding TS on a local TV station in the Tri-Cities area. The PSA will run for two months this spring. The national Tourette Syndrome Association produced the PSA, and Jean paid to have it modified to include Washington chapter information. We hope to air the PSA in other parts of the state in the future.

Informational Brochures - Thanks to Wendy Spektor for passing out our information brochure to schools on Mercer Island, part of Bellevue and the Pediatric Association. If you can help us get the word out about TS and our chapter by distributing our brochure, please contact the editor.

Become a Member Now!

Shop & Support

NEWS FROM NATIONAL

The Tourette Syndrome Association holds its national conference every two years. This year it will be held November 2-5 in Alexandria, Virginia. Symposia will be offered on the following topics: adult, educator, family, advocacy, parenting and medical issues. In addition, there will be interactive, spontaneous workshops, a question and answer panel, complex medical case presentations and the TSA annual meeting, as well as many occasions to get to know other people around the country who deal with TS in their daily lives. This is an exceptional opportunity to hear expert speakers from around the country speak on the latest research and information concerning TS and associated disorders. Mark this on your calendar and make your plans to attend. Contact the TSA for a registration form at (718) 224-2999 or tourette@ix.netcom.com.

Genetic Study

TSA now needs to quickly recruit an additional 200 families for this study in order to narrow those suspect chromosomal regions, and thereby hasten the identification of the gene(s) that cause the symptoms of TS. Finding and analyzing those genetic abnormalities will lead to the development of better medicine for all people with TS. Under no circumstances does TSA ever share information from its database with outside sources - not even with scientific researchers. They are hoping that our chapter members will consider being contacted by an investigator from this study who can explain the investigation in greater detail as well as outline exactly what would be involved should you decide to participate. Your agreement to be called in no way obligates you to participate.

Appropriate families for this study should have: Two siblings with a diagnosis of TS and the availability and willingness to participate by both biological parents.

If your family fits the above profile, please consider contacting TSA and make a contribution to research which will benefit us all. If you are interested, contact Sue Levi-Pearl, Director of Medical and Scientific Programs at TSA. Her number is (718) 224-2999, or e-mail at tourette@ix.netcom.com. Include both your daytime and evening phone numbers in your communication.

TS and the Use of Supplements

NEWS YOU CAN USE

In the September, 1999 issue of Connections, we wrote about the promise and the controversy surrounding stem-cell research. In December of last year, Congress agreed to fund research through the National Institutes of Health (NIH) on stem cells isolated from human embryos. The NIH has set forth guidelines requiring researchers who receive federal money to obtain the stem cells from privately funded researchers who extract them from fetal tissues. The researchers would be forbidden from creating embryos specifically for research. However, they could use stem cells from "excess" embryos at fertility clinics if voluntarily donated. Similarly, stems cells from aborted fetuses could be used if they were donated voluntarily. The guidelines explicitly forbid attempts to clone humans from the cells or mixing human cells with animal cells. Pluripotent stems cells can be used to grow brain cells which, when transplanted into a human, can replace diseased cells with healthy ones. With the promise of federal funding, research is sure to be increased. Watch your newspapers for breakthroughs in the treatment of neurological disorders, hopefully including TS!

Some recent research concerning Attention Deficit Hyperactivity Disorder is summarized below:

Medication Use for ADHD - A report published in the December, 1999 issue of the American Medical Association's Archives of General Psychiatry says that a carefully monitored medication program alone is more effective than intensive behavioral treatment alone for children diagnosed solely with ADHD. The report's main findings apply to a child's classic ADHD symptoms such as concentration problems and impulsivity. For non-ADHD symptoms such as anxiety, poor social skills and academic performance, the author concluded that combining medicine and psychosocial treatments was the most effective. A second, related study showed that for children with anxiety disorders as well as ADHD, behavioral treatments alone can be just as effective as medicine.

Relationship Between Stimulant Use and Tics - by Dr. Kevin J. Black
A recent research study addressed this issue (Gadow et al, Arch. Gen. Psychiatry 1999; 56:330-336). In this study 34 children with chronic tics and attention deficit-hyperactivity disorder (average age 11) received methylphenidate (Ritalin) for ADHD. Initially there was an 8-week phase in which they got either Ritalin or a placebo, and tics were no worse with one than the other. These same children were continued on Ritalin and evaluated every six months for two years using reports from parents and doctors, as well as an artificial, standardized classroom situation. Although parents and doctors knew the children were on Ritalin, the classroom visits were videotaped and later rated for tic severity by investigators who did not know whether the child was on medication. There was no evidence that the children's tics worsened over time, compared to their initial evaluation two years prior. The conclusion is that, although some individual children have been known to develop worse tics on Ritalin or similar medications, most children can tolerate it fine. This is important since often ADHD presents more problems than the tics themselves in a given child.

Another recent report also addresses the safety of stimulants such as Ritalin (http://www.pediatrics.org/cgi/content/full/104/2/e20). Children in a large genetic study of ADHD were evaluated for numerous psychiatric illnesses. Some children had ADHD while others were brothers, sisters, cousins, etc. who did not have ADHD. Since some people have worried that giving children stimulants would lead them to abuse stimulants or other drugs later, the investigators looked back at their data to see if older boys (age 15 or up) who had been treated with stimulants (for 4-5 years on average) were abusing more drugs than boys with ADHD but no stimulant treatment or boys without ADHD. Strikingly, the opposite was true. Seventy-five percent of the untreated boys were abusing alcohol or drugs, compared to 25% of the boys who had received treatment with stimulants. Perhaps stimulant treatment for ADHD reduces the risk of subsequent drug abuse. On the other hand, it is possible that boys who were at high risk of drug abuse were treated with Ritalin less often than other boys. In either case, there is clearly no support for the idea that Ritalin treatment of ADHD turns kids into drug abusers, an important and reassuring message for parents of kids with ADHD.

Reprinted from Greater Missouri TSA newsletter, Fall 1999

Report Card on IDEA

BOOK REVIEW:
Music in the Midst of Chaos

An Oregon mother has published a compelling book about living with a severely disabled child. Music in the Midst of Chaos - One Family's Saga on the Human Rights Battlefield is one family's story which addresses the heartache and trials that parents of children with disabilities frequently confront.

When many parents would have become overwhelmed or given up, author Jean Conklin and her husband, Dave, researched, carefully sought after hidden answers, and were determined to offer their daughters (one with TS, the other with Cerebral Palsy) the same opportunities available to non-disabled children. They worked with teachers, doctors, children and the legal system to give their children a quality life. The book expertly blends Conklin's own education and personal journey of growth with the struggles and triumphs faced by family members.

One of the most difficult fights Jean would face occurred in 1993, when the Washington Division of Social and Health Services (DSHS) denied her daughter's application for Developmental Disability eligibility in Washington state because DSHS regarded Tourette Syndrome as a psychological disorder (see accompanying article on legal precedent below). Conklin prevailed after a 30-month battle that was resolved in Olympia, and a landmark decision in 1996 declared TS an organic neurological disorder. Their daughter became eligible for DDD services and currently lives in an ARC adult family home in our state. The entire national precedent decision is included in the expertly written volume. Conklin served as her own attorney in the confrontation.

As many TS parents can understand, Conklin paid a heavy price for her battles and victories - the personal cost of seemingly bottomless grief and depression, numbing guilt, sorrow and despair. Living the belief that advocacy for her children was her only course helped bring Conklin to pen and publish the manuscript. The writing was cathartic. Jean states, "Although parents of 'normal' children don't always understand the title, I am finding that anyone parenting a severely disabled child instantly relates to those words, Music in the Midst of Chaos, because in the midst of our trials with disabilities, we 'special families' hear some fantastic music. The symphony of my life has been absolutely beautiful."

Tucked inside the expertly organized 368 pages are a wealth of coping tips and tricks, hints for parents and providers, and easy-to-process information on dealing with depression and grief, creating a parent advocacy file, tips for use in parent/teacher meetings, Special Olympics, legal details for parents planning for the child's future, and details about TS, ADD, Cerebral Palsy, and many more issues that parents of disabled children frequently cope with. Well documented with relevant appendixes, an exhaustive index and a variety of cross reference sections, the easy-to-read volume includes solid advice and support for family members, friends and professionals.

Ms. Conklin has graciously donated a copy of her book to our chapter's lending library. You may contact Sue Bream at (206) 283-0575 to check it out. Or purchase a signed copy ($16.95 + $3.20 s/h) from the author:

Jean Conklin
225 SW Butte Drive
Hermiston, OR 97838
E-mail carico@oregontrail.net
(541) 567-1566
Fax: (541) 567-2509
Visit her extensive website: http://booksbyjean.com/ or call her distributor toll free (877) 877-2260

WASHINGTON TOURETTERS NOW ELIGIBLE FOR DDD SERVICES

People with Tourette Syndrome only recently became eligible for Developmental Disability services in Washington State. It was not because the TS victims weren't disabled enough - - it was because the state did not consider TS a developmental disability!

What is a developmental disability?

Unlike a physical disability, a developmental disability begins at an early age, continues indefinitely, and results in a substantial handicap. Examples of developmental disabilities include autism, cerebral palsy, mental retardation and epilepsy, or other neurologic conditions. Federal and State assistance for people with severe developmental disabilities is generally considered an absolute requirement for survival, because these benefits are usually the only source of income and benefits. The benefits come from Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and every state's Department for Developmental Disabilities, which is usually administered by the Department of Social and Health Services.

If Washington State did not consider Tourette Syndrome a developmental disability, then how did the state categorize TS?

Prior to 1996, Washington's Department of Social and Health Services regarded Tourette Syndrome as a psychiatric condition, which automatically disqualified TS applicants from seeking eligibility for state services through the Developmental Disability Division (DDD). WAC275-57-026 (b) (v) states that a developmental disability is a condition which "is not attributable to mental illness, personality and behavioral disorders, or other psychiatric conditions." Although Tourette tends to mock mental illness, personality and behavioral disorders, and other psychiatric conditions, it has been firmly established in the medical field for many years that Tourette is an organic, neurological disorder.

So how could Washington take the stand that TS is a psychiatric condition?

Tourette Syndrome is listed, along with thousands of other disorders, in the American Psychiatric Association's Diagnostic and Statistical Manual. The DSM-IV is generally regarded as the 'bible of the mental health industry.' It is quite natural that people who are trained in mental health assume (albeit, erroneously) that because Tourette Syndrome is listed in the DSM-IV, it is a mental health problem and therefore not, by Washington DDD definition, a developmental disability.

What difference did it make that Washington did not recognize TS as a neurological condition?

It made all the difference! Anyone with TS was automatically disqualified from even applying for developmental disability services in Washington, for the specific reason that they had Tourette Syndrome. It is the mission and the responsibility of Washington's DDD "to make a positive difference in the lives of people eligible for services, through offering quality supports and services." If Touretters are not eligible for services because of their disorder, then it would be impossible for people with TS to ever access those DDD services that many so desperately need! Mandated services for victims of TS were effectively being denied because of semantics - because Tourette Syndrome just happened to be listed in the DSM-IV.

Why does Washington now recognize TS as a Developmental Disability?

Because a parent stood her ground and proved that the state was in error. In 1993, our adult daughter in Washington was denied eligibility for DDD services on the (partial) basis that Tourette was not a neurological disorder. Knowing the state's assumption was erroneous, and determined to not allow the state to discriminate against our daughter, I filed an appeal to DDD's denial of eligibility. Unwilling to hire an attorney, I twice won favorable rulings, only to see the Attorney General's Office succeed in overturning them. I pursued the case all the way to the State Capital, and in 1996, we won the Review Decision and Final Order that we sought. It was a two-and-a-half year legal battle of one parent against the State of Washington, but this ruling became the landmark decision that benefits Touretters in Washington state, and the precedent ruling now also serves as a model for legal cases in other states.

But isn't SSI eligibility sufficient? My child with Tourette has already met the federal developmental disability definition and become eligible for SSI. Isn't that child also automatically eligible for State DDD services?

It seems logical that once a person has qualified for SSI on the basis of a developmental disability, that all states would just naturally accept that eligibility and offer DDD services. However, it's not quite that simple. Individuals must also apply for state developmental disability eligibility to receive services from any state. And unfortunately in some states, it's a whole different set of rules.

Can Touretters now access DDD services in Washington?

Those with TS are now eligible to apply for developmental disability services in Washington state. Our adult daughter with severe TS+ has been receiving excellent Washington State DDD services since November, 1996.

What kinds of services does DDD provide for someone who is developmentally disabled as a result of Tourette Syndrome?

Services are designed for the individual, and the budget is smaller than the demand. But the entire palette of DDD assistance is technically available for all eligible DDD clients. DDD service opportunities include Case Management, Family Resource Coordination, Family Support (including short-term intervention services, respite care, etc.), Community Guides for services, CAP Waiver and Medicaid eligibility, access to Medicaid Personal Care (MPC) for long-term support, Emergency Services, Self-Directed Care, Residential Services, and Day Program/ Employment Services. It is important to apply now for state DDD eligibility. Budgets are small and caseloads continue to grow. The gap remains between service needs and available resources. DDD eligibility does not guarantee paid services. As an illustration, in Washington:

• There are 2400 people on the waiting list for the Family Support Opportunity Program.
• There are 2600 adults waiting for day program/supported employment.

How do I apply for DDD eligibility?

The important thing for Touretters is to APPLY NOW for DDD eligibility! Each of the six state regions has a different toll-free number. A call to the Department of Social and Health Services, State of Washington (800-737-0617) should get you to the appropriate office in your region. DDD's Internet website (www.wa.gov/dshs/ddd/index.html) has information about services, budget, rules and laws, and other links.

HOME SCHOOLING

Home schooling has increasingly become a viable option for parents of TS children. These kids often have trouble conforming to the traditional school day - perhaps because of behavioral issues, academic expectations or peer problems. Many parents prefer the flexibility that comes with being able to customize a curriculum which enhances their child's strengths and downplays his or her weaknesses. Sometimes the parents simply grow weary of a continual battle with the district to get the services required to allow the student to succeed in the classroom.

According to a Seattle Times article dated March 22, 1998, "The number of Washington State students who are schooled at home has soared in recent years, and a key factor in the movement's growth is the public school establishment's acceptance of home-schooling as an alternative to the classroom. The influential Washington State School Directors Association offers seminars to educators on how to build cooperative partnerships with home schoolers. Districts across Washington State are creating home school resource centers and alternative, or 'independent study,' programs. Supported by tax dollars, these programs offer classes to home schoolers or allow them to consult with teachers, then do the majority of their schooling at home. In the Puget Sound area alone, at least 2,000 students are enrolled in these programs - nearly double the number of students enrolled last year. From 1990-1997 the number of home-schooled students increased 183%, compared with the private schools increase of 24% and the public schools increase of 18%. There are now 20,000 Washington State students registered as home schoolers."

Here is one mother's reasoning for making the decision to home school her children:

"About five years ago, my husband and I sat down and had a conversation about how we wanted our lives to look in 20 years. This conversation led us into anticipating what we might regret in the future if we didn't change the course of what we were doing at the time. All of our potential regrets centered around missing our children growing up because we were too busy to fully appreciate how precious these young moments are. We came to the realization that kids grow up way too fast when our oldest son 'suddenly' became a teen and turned our lives upside down. We held on for the ride and vowed to do something very different with the way we raised our much younger sons in order to fully cherish this time. Changes were made in our lifestyle that included greatly reducing my work schedule to be more available and, most dramatically, we decided to become our children's 'education coordinators' and not depend solely on the public and private schools that we had empowered to educate our oldest son.

The world of home schooling became ours when we considered the following:

• We want to take full responsibility for raising our children.
• The removal of a child from the family environment for most of the day, every day, is not what we consider good for our family or our children.
• The public school system is underfunded, understaffed and overburdened:
  • Teachers are up to their eyebrows trying to control kids when they should be free to teach.
  • Placing youngsters into an overburdened and virtually unmonitored crowd of same-aged peers frequently leads to the child taking one of three position: bully, victim or bystander, which is not how we want our kids socialized.
  • Large classes tend to limit the amount of time students can spend actually studying the subjects that are required, leading to too much homework after a long day at school and little time to pursue their own interests.
  • People learn at different speeds and by different methods. Teachers rarely have time to identify these, let alone fit their teaching technique to such a wide variety of individuals. This fact was especially compelling when our youngest son was diagnosed with TS+ at the age of five and we spent time looking at all educational alternatives and decided we were on the right course with what we had already set in motion two years earlier - home schooling.
• Private schooling was a somewhat better option but expensive. Furthermore, we discovered that it was no guarantee of a great outcome as demonstrated by our oldest son who came home in the middle of 11th grade, GED in hand, announcing that there was nothing his expensive private school could teach him that he really needed to learn. He was bored.

Many people home school on the basis of preserving their religious beliefs, and, like them, we do desire having more control over the influences that will affect our children's spiritual development. Although some prefer to limit the ideas available to their youngsters, others choose to provide a broad base of knowledge from which their children can make their own decisions. We have found that home schoolers run the full gamut - from fundamentalist Christian all the way to atheists, and many flavors in between. It seems that we have much more in common than many would think.

We acknowledge that there are also no guarantees with educating 'out of the box,' but we looked around at the multiple resources, including the Edmonds Cyber School, that were available to us as education coordinators, realized that home schooling didn't mean sitting around a table at home every day with no social life, and took a plunge that has been one of the richest, most fulfilling and fun times of our lives."

Contrary to what some parents might think, making the decision to home school does not mean that one must be an expert in everything from the late Roman Empire to advanced calculus. The Edmonds Cyber School Home School Resource Center, run by the Edmonds School District, is an example of a resource available to home schoolers. Cyber School is now entering its fourth year and serves children in grades K-12 and their families. It began with three rooms and about a hundred kids, and now encompasses over ten rooms, a gymnasium, a stage, an ample library, and a playground. There are currently about 400 kids enrolled, with room for 500. There is no longer a waiting list as similar programs have begun in most major school districts in the Puget Sound area. One does not have to live in the school district to be enrolled in the school although those within the district have priority.

Cyber School began at the request of a number of home schooling families in the Edmonds area. The concept was embraced by several teachers and administrators from within the district, many of whom worked in conjunction with families to create a dynamic and expansive resource model. This model includes class offerings of all kinds: nine world languages, math, science, computing, language arts, art and theater, as well as workshops in numerous areas; resources and support for individual families in most subjects; extensive computer and other technological resources; a curriculum stipend of $500 per student ($250 for kindergarten), which can be used for materials, classes, curriculum, etc.; and opportunities for community and social exchange. The director of Cyber School, along with its staff and individual families, have created an atmosphere in which each person feels validated and respected, no matter what their particular perspective, religion, philosophy or diagnosis.

As a participant in Cyber School, you and your child agree to spend five hours a week on site, and another 20 hours (10 for kindergartners) working on core subjects at home or in the community. During the five hours, your kids can take classes, utilize resources, or just hang out. Each family meets with a certified teacher every 45 days to go over their Student Learning Plan which is created by the family for each child and his/her unique learning style to ensure that the essential learning requirements set forth by the state are adequately addressed. The teacher will help as much or as little as the family desires and serves as a fountain of district and community resources. In addition, a full time counselor is available to families to help with educational, social, psychological, or other issues. There are several kids with TS in the school, and the counselor has been able to link families with occupational or speech therapists, readings specialists, special ed. teachers and a plethora of other experts in and out of district.

Opportunities for socialization abound. Time can be spent in PE, the library and on the playground. Classes can be taken in subjects which parents do not feel comfortable teaching. Classes are held on a "workshop" model: there are no grades or other systems of individual evaluation given, and there is generally much enthusiasm, as most of the kids are there because they are interested in the subject, not as a requirement. There are between six and fifteen kids in a class and parents are welcome to participate or just observe. Some families are there just one day a week and others are there almost everyday; there is no limit to how many classes one can take. The atmosphere at Cyber School is one of a friendly community - moms, dads, kids, teens, babies, grandparents, teachers, and other staff.

Within the Cyber School community are various co-ops. The Log Cabin Homeschool Co-op consists of about 40 families. The time spent in classes organized by the co-op counts as "Cyber time." Parents hire their own teachers and offer classes in everything from anatomy to pottery, robotics to geography, orienteering to historical drama. Another co-op focuses on world history. In addition, the school has partnered with The Center for Wooden Boats, The Children's Museum, Edmonds Community College, and numerous others which offer workshops and other educational opportunities at no or low cost to the families.

Parents of TS students often have special concerns regarding the education of their children. As shown above, some parents of TS students choose home schooling as a way to have more control over the manner in which their child is educated. Others do it more as a way to lessen the stress and anxiety that a traditional school creates in their child. Here is another mother's account of the journey that led them to home school:

"The decision to home school our oldest son after 5th grade was not one we made easily nor optimistically, but as he enters into the second semester of his 9th grade year, for the most part, we are glad we did.

We based our decision on a number of factors (although interestingly, we had not yet gotten the Tourette diagnosis so that wasn't one of them). The small private school our son attended through 5th grade focused on the arts, social skills, creativity and academics in roughly that order. The setting and rituals of the school were well ingrained and comfortable to him and he was able to maintain himself at school. Even so, he raged violently on either end of the school day and frequently the ride home in the afternoon was hellish as he decompressed from holding in all the day's frustrations and tics. During his 5th grade year, we looked for a school that would be a good fit academically and temperamentally for him, and came up empty-handed. We looked at everything from mainstream public schools to 'special' schools and found nothing that would work for him (or us) or would be 'worth' the raging and effort it would take to get him there!

Discouraged, we took up the idea of home schooling as a last resort. We realized that losing the sanity-saving time while he was in school would be hard, but not as hard and destructive as the two times a day rages were on him and on our family. He was enthusiastic about trying it and we assured him if it didn't work, we would do something else.

At first, we tried to model his school day like a "regular" school day, but soon found that the best way to teach him was to work with his rhythms and interests instead of always what we think he should be studying. This was and still is a major stretch for us. I have strong ideas about what constitutes an education and yet if our son is opposed to learning a subject to the point of raging about it, he won't be learning anyway, so what is the point? Instead, we poll him about his interests and passions and build a curriculum around them. Subjects like math and science have been the most problematic in this regard and still constitute meltdowns when he doesn't understand a concept or how to figure out an equation.

As mentioned previously, home schooling has not been a perfect solution for our TS son, but it has certainly cut down on the physical raging and anxiety that was so destructive and traumatic. We realized after the first year that teaching him exclusively ourselves was not the best solution and so have had him enrolled in community classes, Cyber School classes and even a weekend workshop at a community college. Again, we apply our overall philosophy of teaching that following interests can lead to learning and try to find classes that match his passions and our educational goals."

Sometimes TS students need specialized services because of learning disabilities or other problems. Federal and state laws regarding special education apply to every school-aged child whether that child is in a public school or being educated at home. If home school parents feel that their child is in need of special ed. services, they can still get the child assessed at a public school and qualified for services with a special ed. professional at no cost to the parents. The child can receive the services at his/her local public school or through a home school resource center such as the Cyber School. A problem can arise when the child resides in one school district but prefers to receive the services in another district. In that instance, the two district might argue over which was required to pay for the services. Although the law is to be applied equally regardless of whether the child is in public school or home schooled, some parents report that it is more difficult to get their child qualified for special ed. services when the child is home schooled.

This mother's story illustrates her perception that in her particular school district, enrolling her child in public school would make it easier to gain access to the special services he needed. It also highlights the tough decision she had to make when she came to the realization that home schooling was not currently in the best interests of her TS child and family:

"So here we were, making the decision to do the one thing in our childrens' education we had promised ourselves we wouldn't, send one of them to public school. Our three sons and twin daughters, ages 6 to 13, had known only home as school in the eight years since we had begun. All the hard questions plagued us. Were we doing the right thing? Had we failed? Were we betraying our commitment, our values? Or was this simply another aspect of the incredibly free and creative experience home schooling provides?

We have long desired to create an opportunity for all of our kids to develop a love of learning and the support to grow at their own pace, as well as follow their strengths and discover the gifts they were uniquely created to share. Home schooling by its very nature is a wonderfully flexible and adaptive educational choice for a family. It truly is a lifestyle. And now this lifestyle was going to change.

For several years we had struggled with our oldest two sons, now 13 and 11. Both had initially exhibited attentional problems that had escalated to include raging, obsessive compulsive behavior and debilitating vocal and muscular tics. A series of assessments, tests and diagnosis three years ago helped us put a handle on the neurological spectrum disorder that includes ADHD, OCD and TS, all of which were affecting our boys, and our family. It had taken over a year to come to grips with the need to examine the public school option and to be willing to act on it. For longer than that, doctors and therapists, none of whom understood home schooling, had advised us to consider it. Medications, behavior management techniques, and their own personalities had brought different responses from the two boys regarding home education. Though both preferred learning at home, only the oldest, our self-motivated, goal-oriented achiever, was making significant progress. The 11 year old, our creative, self-oriented socialite, was failing terribly, monopolizing all of my energy, and demolishing our home learning environment with his capricious mood swings and raging.

There were things he just wasn't comprehending. Learning disabilities often go hand in hand with attentional disorders. Accessing the public school's resources for assessing these disabilities and helping him with them meant enrolling him as a student. It was also apparent that our younger children needed an opportunity to have a larger portion of my attention to enable them to progress. And so it had become a family decision to enroll him in public school for a year. He would be in 5th grade, the last year we would feel comfortable having him in that setting, with those influences.

To prepare for his transition to public school, I attended a PAVE workshop to help me understand how to access the school system and enlist services for my son. The local elementary school was outwardly very accommodating, assigning him to a teacher who 'understood' TS, scheduling resource room services and doing LD testing. What we hadn't anticipated was the 'culture shock' a boy who had always learned at home would experience. Initially he seemed to fit in quickly. Then we began to get reports from the teacher regarding situations on the playground, at lunch, in the classroom.

As with most things, having him in public school has been a mixed experience, both positive and negative. His LD assessment did give us a better understanding of his challenges and provide him with the opportunity for daily instruction to help them. His artistic and musical abilities have been given a platform and recognition, building his self esteem. And his confidence in public speaking has provided opportunities to represent his class to the public, as well as explain his disorder to his classmates when his tics became so severe he had to see the school nurse. But the negatives, issues that had always been part of our reason for home schooling regardless of our children's abilities or disabilities, were only magnified for a child with ADHD, OCD and TS. Not being able to read social cues, my son often finds himself unwanted by a group of kids he's trying to be friends with, a blow to his self confidence. And because few people really understand a disorder like TS, put-downs and name calling become the companions of ignorance from classmates. Learning all the 'hidden rules' of the social culture that accompanies public school has had its own challenges, especially to a boy who has a hard time with the written ones. And though a teacher may 'understand' the disorder, he still has 29 other students to manage and educate, and little time for individual instruction or compassion.

So far, his year in public school is accomplishing what we had hoped, a break for the rest of the family with a chance to heal, and access to the school system's LD assessment and instructional resources. Aside from those things, little in that learning environment would encourage us to enroll any of our other children. And it is our hope and intention that, after this year of public school experience, we will be bringing him home to finish his education."

Parents who home school are passionate about their choice! For those parents out there who have tried unsuccessfully to make public or private school a positive and academically enriching experience, there is another option. There is a wealth of information available to parents considering home schooling. Washington Home School Organization's web site (www.washhomeschool.org/ ) is a good place to start. It lists the state requirements regarding home schooling, support groups throughout the state, advantages and disadvantages to home schooling and more. For some good general information on home schooling, try www.welltrainedmind.com/. There is even a web site for ADHD kids who are home schooled, http://add.miningco.com/health/add/msubhome.htm. If you would like to speak to a home school parent about her experience or to get more resources, contact Nancy Hamilton at (360) 647-1287, Mary Clayton Enderlein at enderlin@gte.net or Jane Chateaubriand at a-jchat@microsoft.com.

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