Education

Do You Need a School Advocate??

The New York City Counseling Program, run through National TSA with an office
in Bayside, Queens and in Brooklyn, provides counseling for those affected by TS. The Counseling Program will also provide educational advocacy for your child,
sending a social worker to educate school officials about TS and to advocate for your child’s needs. All you need to do is make one visit to a counselor in order to
qualify for the Counseling Program’s educational advocacy service. Call the Counseling Program office in Brooklyn at 718/858.5985 or in Queens at 718.224.2999.

Some of our members, however, find that they cannot travel to the Counseling Program offices in Brooklyn or Queens or do not want to participate in a counseling
session or sessions. For those members, the New York City Chapter will provide an educational advocate, who is a professional social worker, trained in TS. Just call us at 646.202.9683 or email us at chapter@tsa-nyc.org. The Chapter does not charge members for this service, although families who can afford to are encouraged to make a donation to offset the Chapter’s costs. Here are the levels of service the Chapter can provide:

1.In-service: The Chapter can provide a social worker to make a presentation to your child’s teachers and school officials about Tourette Syndrome. What is TS? What are the symptoms? How do they show up in the classroom? What are the related disorders? What are some classroom strategies and techniques for dealing
with a child’s tics? How does a teacher make a child with TS a successful student? How can a teacher help a child with TS cope with peer comments? We can also
provide someone to make a presentation to your child’s peers, including showing a short video.

2.Advocacy: The Chapter can provide someone to help you sort through a problem at school. Perhaps a teacher is disciplining your child for tics. We can arm you with the literature you need to educate the teacher about TS in the classroom. Or if you prefer, our advocate can educate the teacher and the school about TS
and provide them with suggestions for productive classroom strategies.

3.Advanced Advocacy: If your child is being asked to leave a school, being routinely disciplined, being evaluated for an IEP, or being evaluated for a placement in new school, we can provide you with information and literature you
need so you can be your child’s best advocate. If you would like an outside advocate to manage your child’s case, attend meetings, and communicate with the school system, the following advocacy organizations provide these services, often free of charge. You can also find a referral list on our website, www.tsa-nyc.org, of
lawyers and advocates who charge for their services.

Advocates for Children
service area is citywide.
212 947-9779
www.advocatesforchildren.org

Resources for Children with
Special Needs, Inc.
service area is citywide
212 677-4650
www.resourcesnyc.org

Sinergia
service area is citywide
212 496-1300
www.sinergiany.org

United We Stand
service area is Brooklyn
718 302-4313
www.taalliance.org/ptis/uws

The College Search

Finding the right college for your child can be an overwhelming, stressful process; if he or she has a disability there are even more factors that you need to consider in your search.  I can't profess to have all the answers, nor can I conclude that there is a right or wrong way to go about it, but I can relate the steps we went through looking for a college that would be a good match for our son Andy, who has Tourette Syndrome (TS), Obsessive Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD).  Hopefully, our experiences will help others who will be going through the college search process.

Our earliest concerns were whether a child who was so dependent on parents, teachers, resource room and guidance counselors for his day-to-day survival would ever function well enough on his own to be able to go to college.  We worried that, although Andy was very intelligent, his lack of social skills, emotional control, and organizational skills would prevent him from ever matriculating in college at all.  We didn't realize that his social, emotional and organizational development would continue throughout high school, and now, as a senior in high school, he looks nothing like the child he was at 10 or 11 or even 15 or 16 years of age.  Students use the PSAT and SAT scores to help identify a college that will be a good match for them academically; typically, they don't take these tests until the 11th grade.  Although some of them may be thinking about college long before that, not until that age can they seriously zero in on those schools that would be appropriate for them.  It is the same with social development; you may be considering a range of potential schools from community colleges and small colleges with intensive disability support systems to large state universities, but not until your child is in 10th or 11th grade can you gauge his/her social and emotional development well enough to be able to narrow down the selection to a smaller set of appropriate schools.

We started our search by accumulating information on colleges, keeping them on two separate lists: the first included schools that were a good academic and social fit and the second included those with disability support services.   We added and eliminated schools from the first list based on information we found in the standard college guides, such as those by Edward Fiske, Loren Pope, The College Finder by Steven Antonoff, The Princeton Review, Peterson's guides,  the Insider's Guide and the USNews and World Report rankings.  All of these can be found in public libraries and bookstores, and much information can also be found on the internet at sites such as www.collegeboard.com and www.usnews.com.   Also, colleges have detailed information on their own websites. The kinds of information we got from these sources included, size, location and cost of attending the school, average SAT scores and proportion of applicants admitted,  proportion of students who return after freshman year and who graduate within 6 years, proportion of students in fraternities and sororities, extra-curricular activities, whether the school tends toward liberal or conservative, diversity, and how accepting the school is of students who are different.  At this stage we had to think about whether or not Andy would live at home and go to a local college, live in the dorms at a local college or go away to school, and if so, how far away.  Would he be more comfortable at a small liberal arts college where he could get a lot of individualized attention or a large university where he wouldn't stand out as being the kid with the disability?  Would he rather go to a college in a city, suburb or rural area? Andy had strong opinions on some of these variables, on others he didn't know what his preferences were, and on some he didn't care. 

We obtained information on disability support from several sources also.  It required considerable investigation.  We started with The K. and W. Guide and Peterson's Colleges for Students with Learning Disabilities or Attention Deficit Disorders. Both are available at libraries and bookstores.  These guides provide a general overview of finding a college for a child with a disability and suggest specific accommodations.  They also identify many schools with disability support and classify the level of support from partial to comprehensive.  The school with the most comprehensive services we found was Landmark College in Vermont.  It is a fully accredited college designed specifically for students with learning disabilities and ADD.  Although colleges and universities are legally not allowed to discriminate against persons with disabilities, in practice the level of support ranges from zero to comprehensive.  Our goal was to find the intersection of the two lists of schools- those that were a good social and academic fit and those with disability support.  A key aspect of the search was determining how committed these schools are to supporting a student with TS.

Most colleges expect students to seek college information on their own and contact the schools themselves.  This is an unrealistic expectation for many students with TS (as well as many without).  Whenever we found that a school was insistent on limiting the parent's role in the college search, we felt this college did not understand neurobiological disorders and would not be a good match for our son.  While some of the schools didn't respond to our request for information on disability services at all, some of them, including Brown University, New York University and University of Rochester responded eagerly.

How do you determine the level of support a college is willing to give to students with disabilities?  We did not have the time, nor did Andy have the patience, to visit many schools to find out in person.  While other families were doing the spring, summer and fall trips stopping at five or six colleges per trip, we were doing our search in the library, on the Internet and on the telephone.  Once we had limited the choices to 5 or 6 schools, we could visit the top two choices.  Then, if Andy wasn't accepted at either of those, we could visit the rest.

We were able to find a tremendous amount of information on the USNews site and on each college's own website.  On the USNews website, if you click on "education," then on "colleges," look at the rankings and click on any individual college, then click on "disability" you can find much specific information.  For example, following this procedure for Washington University in St. Louis, you find that Wash U provides note-taking services, oral testing, readers, tutors, talking books, reading machines, tape recorders, videotaped classes, untimed tests, learning center, and extended time for tests.  You can find the colleges' own websites in some of the college guides mentioned above or by doing an internet search.   Often we had to read between the lines and interpret what was and was not included on the website.  If the disability support office and services were easy to find, that was a good first step.  When there was no disability information on the college's website, it gave us the impression that the college was not interested in attracting students with disabilities.  We didn't eliminate the college from our list because the omission could have been an oversight, but we were more likely to follow up on a school that was proud to be in compliance.  Even better were those colleges which listed the specific supports they offer. You can figure out from the accommodations whether they are more geared toward students with physical than neurobiological disabilities.  Though none of them mentioned TS, a good barometer of a school's willingness to provide accommodations for a student with TS is whether or not it lists accommodations for students with ADD.  Any questions you have can be followed up by an e-mail or phone call to the college.

Often included on the school's website is the procedure for requesting accommodations, and some even have a request form that you can download and print.  Typically, the student doesn't apply for services until after s/he is accepted to the college.  Some schools consider it the student's responsibility to notify professors that s/he has a disability while other schools will notify the professors for the student.  However, no school will notify professors without the student's written permission.  We thought it was a good idea to limit our search to colleges that make the commitment to notify professors and follow up in the case of non-compliance.  One of the colleges we identified (Brown University) will notify professors, intervene in the case of non-compliance and offers self-advocacy classes and mentors for students with disabilities. Colleges such as Brown- and there are many others- that systematically provide preventive services and teach self-advocacy are providing support and a safety net while helping the student become more independent.

Medium to large universities generally have an office designated for coordination of services for students with disabilities with a coordinator or director and several staff members.  I would be wary of a university with more than 3,000 students that doesn't have such an office.  We found that some universities, such as Carnegie Mellon University include the student disability services within the Office of Equal Opportunity Employment for staff and faculty.  The services are nearly entirely devoted to staff with physical disabilities.  This was clearly not appropriate for our son.  Another thing to watch for is how many staff members work in the disability support office, and if the number has increased or decreased over the past few years. If the office has only one or two part time workers and the director leaves, there may be no coordinated support services when your child enrolls.   Johns Hopkins University has a student disability office, but when I called I found out that the director had retired; her position wasn't filled and she was going to be continuing on a part-time basis until they found a replacement.  She assured me that her staff could run the office without her. As of my last phone call, there was still no replacement.  Though JHU may well provide accommodations, I wasn't sure who would go to bat for Andy if, for example, one of his professors refuses to let him take tests in a distraction-free location.

Small liberal arts colleges do not usually have a separate office for students with disabilities.  Instead, there is a dean or assistant dean who is assigned the job of disability support coordination.  Sometimes you can tell by the website if the school welcomes students with disabilities or not.  If there is ample information on accommodations, you can assume that the school's position officially is favorable.  If there is little or no information, either it is an oversight or the school really is not interested in attracting students with disabilities. Again, any questions can be cleared up by a call or e-mail.

Some of the Long Island and New York schools we found to have comprehensive services for students with neurobiological disabilities are Adelphi University, Hofstra University and New York University.  Other schools we identified as having partial services and seem to be committed to assuring that the student receives appropriate services are University of Rochester, Rochester Institute of Technology, Vassar College and Colgate University.  This is by no means a complete list, nor is it a guarantee that the services your child needs will be provided by these schools.  It is merely a place to start your search.  For all of you who are or will be taking this exciting journey, I wish you a fruitful search.  We found it heartening that so many schools are committed to delivering a first class education to students with a disability. Our search had a happy ending; Andy was accepted to his first choice school, Brown University.   

A Teacher's Perspective

During a parent/teacher conference earlier this year, the mother of one of my fifth grade students expressed concern over a peculiar habit her ten-year-old had recently developed - a lopsided stretching of one side of his mouth that he generally made involuntarily and without noticing it himself.  I had noticed, however.  As a teacher with Tourette Syndrome, I naturally pay particular attention to anything that might fall under the TS umbrella.  This student's twitch did not - it appeared infrequently, mostly during competitive games in gym class, and it never lasted more than a minute or two.  I told his mother that I would continue to keep an eye on this aspect of her son's behavior and assured her that she had very little to worry about.

After the conference, I was particularly impressed with this mother's calm and direct approach.  I also felt thankful that I happened to have the experience and education that prevented me from over-reacting.

The truth is, though, that many teachers remain uninformed when it comes to the possible causes of twitches and tics.  Without that information, the classroom can become a difficult place for children who actually do have Tourette Syndrome.  That's where the parents of children with TS have the opportunity to make a tremendous difference in their children's education.  In that vein, there are a few simple yet significant things parents should remember when contacting the teacher of a child with TS.

Despite the recent popularity of disorders of all shapes and sizes, many parents still aren't sure how to talk about those issues when they appear not just on a talk show or the evening news but in their very own homes.  When dealing with teachers, though, it is important that parents take a direct and honest approach.  The more comfortable you are about your child's condition, the more comfortable your child's teacher will feel discussing it.

First, set up a meeting with your child's homeroom teacher.  Mentioning, "Hey, my kid has Tourette Syndrome," while dropping your child off for the first day of school will likely leave an already busy teacher nothing more than confused.  Instead, tryr to set up a meeting before or shortly after school begins.

At the meeting, briefly explain what TS is and, more significantly, how it affects your child's ability to behave and learn in school.  Consider his or her academic performance as well as his or her social behaviors.  Questions to consider include:

• Has TS affected your child's schooling in the past, and if so, how?
• How do your child's tics manifest themselves?
• Are your child's tics more prevalent during particular times of the day or during particular situations?
• Are there strategies you have found useful in dealing with your child's tics?
• Is he or she taking any medications for TS?
• How comfortable is your child with his or her diagnosis?

Many resources are available to help your child's teacher(s) take an active role in dealing with your child's TS.  Providing a few of those resources at the beginning of the school year can only help inform educators.  While there are a number of informative books on educating children with TS - "Teaching the Tiger: A Handbook for Individuals in the Educaiton of Students with Attention Deficit Disorders, Tourette Syndrome or Obsessive Compulsive Disorder" is just one particularly useful example - it may be a bit overwhelming for a teacher to receive a lengthy book from parents with the expectation that he or she read it right away.

Instead, start with more condensed yet equally informative resources, such as one or even serveral brochures about TS.  The Tourette Syndrome Association publishes a wide array of such brochures aimed at educating teachers, and most are available for less than three dollars, a joyously inexpensive sum when compared with the cost of a stack of books.  Some of the best TSA brochers for teachers are "An Educators Guide to TS," "Coping with TS in the Classroom," and "Helpful Techniques to Aid the TS Student."  Many teachers will also be interested in learning more about TS electronically; refer them to the TSA website:  www.tsa.mgh.harvard.edu.

One other resource to consider sharing with your child's teacher is a documentary called "A Regular Kid, That's Me."  Made specifically for educators, this short film features 19 young people with TS in various classroom settings.  This may be a particularly useful tool for parents of a child who has not just one, but several different teachers.  Speak to your child's teacher or school administrator about the possibility of screening "A Regular Kid," perhaps during a faculty meeting.

Another essential topic to cover with your child's teacher is how your child's classmates might react to a student with TS.  In an ideal world, children would recognize similarities and respect differences in others.  The truth is, though, that any real or perceived difference may easily be turned into a subject of ridicule.  If your child has already had a difficult time socially due to TS, consider taking a proactive role at the beginning of the new school year.  There are a number of ways to do this.

Another documentary, also available through TSA, focuses on reducing the ridiculing of kids with TS and is aimed at elementary school-aged children.  "Stop It!  I Can't" is only thirteen minutes in length, and can be used to open a classroom discussion of how to respect peers.  Another similar tool is a children's book by Adam Buehrens titled, "Hi, I'm Adam: A Child's Book About TS."

Before suggesting the use of these resources in your child's class though, be sure your child is comfortable with an open discussion about what is certainly a very personal and perhaps difficult subject.  In fact, the most important preparation any parent can make for his or her child's education is to  provide the self-esteem every child needs to be a successful student.

You can contact the National Tourette Syndrome Association for written materials to give your child's teachers at (718) 224-2999.  

Formal Intervention at School 

Please visit Leslie's website for a thorough discussion of school advocacy.  Leslie Packer is a psychologist with a special knowledge of Tourette Syndrome.