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Every day TSA receives questions from parents and advocates asking for help with specific school situations. In this Education Advocacy section we present TSA's answers to real questions sent to TSA. Have a question on Education Advocacy? Click here to send it to us.
"ASK TSA about Education Advocacy" features contributions from TSA's Advocacy Specialist KATHY GIORDANO, an experienced advocacy professional, who participates in TSA presentations to parent groups around the country, teaching advocacy skills (click here for biographical information).
TO SEND TSA YOUR QUESTION PLEASE CLICK HERE.
Previously answered questions (click on each to read full text below):
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Question: My 12 year old was diagnosed with TS, and her principal is working with us to set up an IEP. However, at our first meeting, we were told she is not eligible for an IEP because she is not failing any classes. They said that they can test for learning disabilities, but if none are present she will not qualify. They suggest a 504 plan. I am so confused, I thought she is eligible for an IEP with just the diagnosis of TS and that TS is a disability under OHI, and that alone qualifies her for an IEP. I am not looking for a special education setting for her, I only want the most supportive and binding plan that protects her rights, especially before she enters high school. Thanks for your help!
TSA Answers:
You say in your e-mail that you were told: “They can test for LD's, but if none are present she will not qualify for an IEP.” This is NOT true. It is not a requirement that a student have a Learning Disability in order to be eligible for an IEP. As a student with TS, she can now be classified under OHI although it is always wise to test for an related learning disabilities during the evaluation process.
Questions regarding eligibility for an IEP or for a 504 Plan have become an frequently asked questions at this website. We are in the process of preparing detailed and specific articles regarding eligibility for both 504 Plans and IEP’s (watch the tsa-usa.org website Advocacy Page for these and other education articles). To answer one of your questions, a child with TS does not automatically qualify for an IEP or a 504 Plan just because they have a diagnosis of TS.
In order to be eligible for an IEP, the child must have one of the 12 identified disabilities listed in the following excerpt from Federal Education Law: “§ 300.8 Child with a disability. (1) Child with a disability means a child evaluated as having mental retardation, a hearing impairment (including deafness), a speech or language impairment, a visual impairment (including blindness), a serious emotional disturbance (referred to in this part as ‘‘emotional disturbance’’), an orthopedic impairment, autism, traumatic brain injury, an other health impairment, a specific learning disability, deafblindness, or multiple disabilities, and who, by reason thereof, needs special education and related services.”
Important and key words are “by reason thereof, needs special education and related services”. It is true that TS is now listed in the Federal Individuals with Disabilities Education Act (IDEA) under Other Health Impaired (OHI). But in order to qualify for an IEP and a classification of OHI, the school must conduct an assessment/evaluation for the student and then he/she must be found to be in need of special education services because of the disability. This is determined by an IEP committee (of which the parent is an important member). It is very important to remember that special education does NOT mean a change of placement or setting as services can be provided while the child remains in general education.
Additionally, the child DOES NOT need to be failing. Section 300.101(c) of IDEA has been revised to clarify that a free appropriate public education (FAPE) must be available to any individual child who is determined as having a disability who needs special education and related services, even though the child has not failed or been retained in a course, and is advancing from grade to grade.
If the child does not require ‘special education services’ (which can only be determined after an assessment/evaluation is conducted) he/she is not eligible for an IEP. He/she may, however, qualify for a 504 Plan under the Americans with Disability Act (ADA). It provides protection from being discriminated against due to a disability and again, the child does NOT need to be failing in order to be eligible for a 504 Plan. Typically, 504 Plans are developed to provide accommodations and modifications to the general education curriculum and setting which ‘levels the playing field’ for the student with a disability to have similar access to a free and appropriate education as are children without disabilities.
According to the U.S. Department of Education, Office for Civil Rights: "Section 504 provides that: No otherwise qualified individual with handicaps in the United States...shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...." It goes on to state: "The key factor in determining whether a person is considered an 'individual with handicaps' covered by Section 504 is whether the physical or mental impairment results in a substantial limitation of one or more major life activities. Major life activities, as defined in the regulation, include functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working." It further states "Students with hidden disabilities frequently are not properly diagnosed. For example, a student with an undiagnosed hearing impairment may be unable to understand much of what a teacher says; a student with a learning disability may be unable to process oral or written information routinely; or a student with an emotional problem may be unable to concentrate in a regular classroom setting. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of nonhandicapped students. They may be perceived by teachers and fellow students as slow, lazy or as discipline problems."
I hope that this information is helpful. Please continue to watch for updates on the website.
Timed Tests - Anxiety is Causing Child to Fail
Question: My son is recently diagnosed, and we are having difficulty getting his teacher to respond to his needs. The current "big issue" is that she insists on him taking a timed math test. He has failed it 7 times at this point, not because he doesn't know the ut because he becomes anxious. Anyway I cannot get the school to understand that an anxiety inducing assignment such as this, plus the fact he fails it every time is only a recipe for him to spiral down into a pit of "I can't do math".
TSA answers: Timed tests are stress producing and anything that increases stress will, for most students with TS, increase symptoms. It is a very common practice to include in a student’s IEP or 504 Plan accommodations such that he will not be graded on timed tests. Many students continue to participate because they don’t want to be seen as being “different”, but since it is not an accurate reflection of their math knowledge, no grade is given.
I would ask the teacher what the objective of the time tests are. If they are indeed an attempt to see how students respond under stressful situations, then the test is valid. However, what is the point of determining how a student with a disability that is aggravated by stress would perform? This may be important on an pyscho-educational evaluation, but doesn't make sense on a regular basis. Additionally, if the student has any obsessive compulsive tendencies, which many students with TS have to some extent, then a situation that regular results in failure may very well result in the student shutting down which can spiral into many, many more difficult situations.
It is helpful to support students in testing their limits so that they can keep achieving at levels which they may not think they are capable of performing. However, timed tests are, for many students with TS, an invitation for stress and failure which may snowball into anxiety and failure in other areas.
If the teacher continues to require timed tests, you as a parent can support your son in a manner that lets him know that these exercises mean nothing regarding his ability to be successful. Too many children speed through their work. Quality, in most instances, is better than quantity. Your continued support may not produce any obvious short term results, but over time will be the type of support that allows your son to see himself as being successful.
Evaluations, Assessments, FBA's and Access to Records
Question:
FOLLOWING IS A SET OF COMPREHENSIVE QUESTIONS FROM ONE PARENT and TSA's responses:
1. I would be interested in any information you would be able to share regarding evaluations for a child who has Tourette Syndrome, who also has ADHD and OCD, and Nonverbal Learning Disabilities.
TSA answers: We're not convinced that there is any one specific test that is better than another for students with TS. It’s important that the evaluator be comfortable with the particular evaluation tool. If you believe that the results are inaccurate, you may want to speak to the evaluator about another form of evaluation that might be more accurate. It is important that parents ask for specific evaluations depending on what difficulties their child is experiencing. For instance, if there are ANY indicators of sensory issues, there should be an evaluation for sensory processing deficits by a person who is knowledgeable and certified in sensory integration symptoms and interventions (most likely an Occupational Therapist or Physical Therapist). There should always be an evaluation for writing ability, but it should not necessarily be limited to fine motor skills. Many, many students with TS have excellent fine motor skills, but extreme difficulties in writing or written language skills. Speech evaluations should include Pragmatic skills, central auditory processing and visual processing, as many students have difficulties in these areas. All of the academic abilities should obviously be evaluated.
2. How important is it for the evaluator to be an expert in Tourette Syndrome?
TSA answers: It depends. Excellent evaluations have been done by people who have little knowledge regarding TS and others who have (or think they have) a great deal of knowledge have done terrible evaluations. It is always helpful that the person have some basic information – and more importantly that they not be limited by misinformation, and that they are available to be educated regarding specific symptoms and related disorders. For instance, when evaluating for dysgraphia – a person who is knowledgeable will test at the time of day that the child has the most difficulties (usually at the end of the day) and will have sample writing that involves length and higher reasoning – such as long answers to questions that the student would need to thinking about. An uninformed evaluator might believe that allowing a student to write his name would indicate if there are writing deficits.
I would want the evaluator to know that symptoms wax and wane and are worse in stressful situations, so that they can determine if the evaluation is indeed a valid representation of the student’s ability. It is very common for evaluators who are more knowledgeable to write in the comments that this may not be a true reflection of the student’s abilities. Actually, when I don’t see this, I will typically ask the evaluator at a meeting (or in private where they are not put on the spot) if they believe it to be an accurate depiction of the student’s true abilities.
3. When do you typically refer a child with TS for a psycho educational evaluation?
TSA answers: The Education Advocacy Manual answers this pretty well by providing a list of indicators when a full psycho-educational evaluation is needed. TYPICALLY – if you are questioning whether or not there should be one – most likely it is a good time to have one conducted. It’s sometimes a good plan to have an evaluation in early grades even if there are no huge difficulties. It is good to get a baseline. Also, and equally or even more importantly, I have seen students spiral down in a blink of the eye. To get an evaluation done can take months – doing one early on can make all the difference. I would never want to see a student struggling in ANY way and say – let’s wait and see how it goes. We always have to keep in mind that stress makes symptoms worse. So if things are beginning to be difficult – it is likely this will increase the child’s stress which will increase symptoms. Nipping difficulties in the bud (whenever possible) is certainly applicable for students with TS. Writing a request to the special education department of your child’s school is the most effective approach to ensure that this will take place. It should state that you are requesting that there be a full evaluation to determine if there is a need for special education services. This will legally require the school to conduct one; a verbal request is not as effective. It will require that the parent provide a letter signed by a doctor indicating that there is a diagnosis. It is also a good idea to indicate specific areas of difficulty that are being observed. Save a copy of the written request because as soon as the school receives the request, they have only a specific time frame in which to complete the evaluations and have an IEP meeting to determine if special education services are necessary.
4. What do you feel are the pros and cons of going privately instead of going through the school district?
TSA answers: We typically suggest going through the school first (or simultaneously if the parents doesn’t object to paying for it). If the parents do not agree with the results, they have the right to respectfully disagree with the results and request an outside evaluation. The school has a legal right to perform their own evaluations and therefore, it often will save time to allow the school to conduct their evaluations. The parents can then, if they wish, request an outside independent evaluation with someone more familiar with TS and how the TS symptoms affect the specific area to be tested. According to IDEA, if the parents demonstrate why an outside evaluation will be beneficial, the school must pay for the evaluation, request mediation and/or due process. Keep in mind that if the parents have an outside evaluation done, the IEP team needs only to consider the results. It is, therefore best to request an outside evaluation without casting blame when possible. I usually discuss the extremely complex relationship between TS and education difficulties and that it would be in the best interest of the student to have someone more familiar with TS be involved in order to have a clear picture of the difficulties this student faces.
5. If you do go privately, does the psychologist have to be a school certified psychologist? What does that mean to your educational advocacy if the private psychologist is or is not a school psychologist?
TSA answers: Most of the outside evaluations that I have worked with are psychologists but not school psychologists. This shouldn’t be a problem as long as the psychologist is familiar with conducting psycho-educational evaluations. It is difficult to document OCD symptoms, and in these cases an outside psychologist can be very helpful in explaining how OCD manifests itself in this student, and why it is disruptive to the student’s progress.
6. When do you refer a child with TS to a neurophysiologist?
TSA answers: If one is available, it is an excellent idea to involve either a neurologist or a neuropsychologist. They typically look at the symptoms as being neurologically driven instead of psychologically driven. In essence, they typically see the symptoms as being caused by the chemical imbalance rather than placing responsibility on either the child or on poor parenting techniques.
7. What would be some examples where a neuropsychologist would be beneficial for a child with Ts?
TSA answers: Anytime there is a diagnosis, a neuropsychologist, if available and knowledgeable regarding TS, can be involved.
8. Again, if you are going to include this report in your advocacy on behalf of a child with TS, does it make a difference if the neuropsychologist is also a certified school psychologist?
TSA answers: No – I would say that it is more important that they show an understanding of TS. They should be able to succinctly explain the students specific difficulties (dysgraphia, sensory issues, tics, ocd, executive deficits, etc. – that would be ideal). Understand, however, that the school needs only to take this information under advisement. Too many people assume that if a Dr. makes a recommendation, that it must be followed. This is not true.
9. When do you find Functional Behavioral Assessments are most useful?
TSA answers: Refer to the “Workbook for FBA’s and PBIP……” that Sue Conners and I authored. Also look to the article on the website and the one in the Education Advocacy Manual regarding FBA’s. Basically, an FBA is useful anytime a student with TS is having difficulties academically, and there is no sign of a learning deficit in the specific area, OR when there are behaviors that are interfering with a student being socially, emotionally or academically successful. However, it is critically important that a valid FBA be conducted because I have seen much damage done by an FBA that results in either misinformation or punitive interventions.
Personally, I found this a great way to go when the child is successful academically, but is trying so hard to learn when accommodations are not meeting his needs and the child's behavior is disruptive to himself and others. I agree as do the authors of IDEA.
10. In your advocacy experience, does it make sense to have an FBA AND a psycho ed or neuropsych?
TSA answers: Absolutely – depending on the circumstances of course. I wouldn’t recommend that in all circumstances both are necessary, however.
11. Regarding FBA’s realistically, how have you handled the issue of collecting data, which I am guessing is difficult if the child does not have a one-on-one aide to collect the data, as the teacher is most likely too busy to realistically collect data. It is my understanding that a good FBA can include academic accommodations as well as look at social skill issues.
TSA answers: A good FBA indeed can include academic accommodations as well as social skills techniques and strategies.
I’m actually not always enthusiastic about a 1:1 aide or teacher collecting data. I prefer an unbiased outside person who knows about TS do an observation. Collecting data can be important and, as you suggest, difficult to collect, but collecting without someone knowledgeable regarding TS symptoms and difficulties, the wrong data might be collected or interpreted incorrectly. For instance, many times schools find it important to keep track of how many times a student tics, rather than looking at when and where the tics are most likely to occur. One time an aide kept complicated data on how many times a 2nd grader ripped paper. The collection of data can be important; but more important is determining when and where the student has the most difficulties.
12. Have any of you had experience with requesting assistive technology evaluations?
TSA answers: Assistive technology evaluations should be provided just as any other evaluations – if needed. For instance, if a student is having extreme difficulty reading due to tics that significantly interfere, there may be an assistive technology evaluation to determine if the student would benefit from books on tape or a computer program that reads the materials while also highlighting the words being read on the computer screen. Probably the most frequent reason for assistive technology evaluations is for writing difficulties to see if a computer is appropriate or if voice activated program is necessary.
13. In addition, Do you typically recommend to families that they get a copy of school records for their child, or just view them?
TSA answers: I usually recommend that parents locate all records (IEP office, principal, dean, etc…), look through them and make copies of any relevant information. It’s always better to be prepared with materials in your hands when attending meetings as a parent or an advocate. The school can charge a “reasonable cost” but cannot deny copies if the parents are unable to pay the cost.
14. One more thing: Does a parent have a right to have the name of the child's aide in the IEP so it is clear that the specific aide the child had in elementary can follow to middle school if needed?
TSA answers: I’ve seen this, but it is not required and actually is highly unusual. An IEP outlines the supports and accommodations that a student needs to be provided. They typically do not state specifically how this is going to occur, or the name of the person who is going to provide it. You can certainly make a good argument for the same aide (see suggestions for Paraprofessional on this website) but a parent does not have a legal right to have this on the IEP.
I really appreciate your responses. I am trying to advocate for my own son who will be transitioning into middle school next year, but have also been asked these questions by other parents of TS children who have looked to me for help.
TSA answers: I appreciate your e-mail as you have asked questions that many people are curious about. Good luck and as always, let us know if we can be of further assistance.
Question: I was wondering if there are any support groups? My son's Tourette is getting worse and he is only 7! My husband and I are having such a hard time and feeling so badly for him.
TSA answers: Thanks for contacting us. Check the top menu item "TSA National Local" tab - and look for U. S. Chapter locator to see if there is a local chapter that offers a support group. Even if the chapter is not close by, contact them. They may know of some supports in your area that better serve kids with TS. You may want to contact TSA if you would be willing to assist in beginning a support group. She can provide a great deal of assistance in beginning a support group in your area and connecting you with others who may also want to be involved.
Symptoms generally become more difficult as stress is increased from school issues. In addition to a support group, you may want to download or purchase the Education Advocacy Manual - visit our online store. It explains methods of advocating so that you son will receive the supports that he needs in school. The section entitled “TOURETTE IS MORE THAN TICS - OTHER IMPORTANT ISSUES TO BE CONSIDERED” lists the numerous related difficulties that can cause so much trouble in school. The manual will also assist you in working with the school so that your son's stress is reduced which typically reduces symptoms. You also want to think about downloading "The ABC's of Special Education" as it helps people who are just getting started. The new “Catalog of Accommodations” in our online store lists accommodations for the related difficulties that students with TS have. Look over both the Education/Education Strategies page as well as the Education Advocacy page for articles and past e-mail Q&A that might assist you. I also recommend the video "Teacher Talks about TS" and "Regular Kid, That's Me. These are both helpful in understanding the difficulties students with TS deal with and strategies to support them.
Good luck and if you need any further assistance, do not hesitate to contact us. If you are not a member of TSA, it may be a good idea to join since your son and you are just beginning the journey. My son with TS is now 22 and the information and support I received from TSA was very instrumental in his success. Good luck and do not hesitate to contact us again.
Question: I have a twelve year old son with TS. I have an I.E. P. for his Tourette's which is a mild form with A.D.D. and O.C.D; I just found out today that the teacher told my son that he needs to start taking more responsibility for his work and that he should not depending on his mother to write notes for him. His teacher also told him that he needs to start acting like a little man and not hide behind his mother. With the teacher stating that, my son’s tics and O.C.D. are now acting up. My son’s small group instructor wrote me a letter stating that he needs to start learning more responsibility and has to be held accountable for his lost work, not turned in work, notebooks left at school, etc. She said she will continue to help him to a point but will not look through his folders to make sure his work is turned in or follow the other steps that we had agreed upon and which some of the things are in his I. E. P.; Could someone please give me an idea what I should do. Thank you for you time and help.
TSA answers: Unfortunately your son's situation is not unique. All too often school personnel do not recognize the difficulties that TS can cause students due to the related disorders and they instead blame the student for being unmotivated and irresponsible. Executive Deficit Disorder is one such disorder that often causes problems that involve organization.
Executive function involves the skills necessary to produce output. This includes managing time, possessions and materials, preparing for short or long-term assignments, determining plausible solutions to problematic situations, following suggestions and other skills related to producing work. This is very often the reason students with TS have difficulty with long term assignments and managing homework assignments.
A person with executive deficits can have many talents and abilities, but they may not possess the organizational skills necessary to demonstrate these abilities in a manner that is useful and productive. Many people with Tourette Syndrome are chronically disorganized due to executive functioning deficits. They have difficulty developing strategies to overcome problems they encounter or implementing strategies that are suggested to them. In other words, they experience "output failure" which creates significant obstacles to academic success. These students frequently need substantial support from a consultant teacher in managing work flow and in learning strategies that will assist them throughout their lives in overcoming their "output failure" due to executive dysfunction disabilities.
Telling a student with Tourette Syndrome that he needs to become more responsible is generally not helpful. Instead, as you suggest in your message, these students MUST be taught strategies that will assist them in being able to accomplish the tasks that are necessary in order to be organized. This requires time, creative solutions and understanding that this difficulty has nothing to do with lack of motivation but instead is related to symptoms of his disability.
It sounds like your son’s school, as many other schools, could benefit from an in service regarding Tourette Syndrome. Call your local chapter (it can be found on this site by clicking on Local and Internatl) and ask if they have someone trained to provide an inservice for your son’s school. If this is not available, two excellent videos titled “A Teacher Talks about Tourette Syndrome” and “A Regular Kid, That’s Me” are both available through the TSA's online store on this website and may also be available through a local library or teacher training center.
You may want to give them a copy of “I Lost My Homework: Strategies for Improving Organization in Students with ADHD”, or “Specific Classroom Strategies and Techniques for Students with TS,2nd ed.” both of which can be ordered from the TSA's online store.
Have you spoken to the coordinator of special education and told them specifically what is not being followed on your son’s IEP? The IEP is a legal document and the teachers cannot select what they adhere to and what they ignore. It may be that the teachers need some education regarding TS and related disorders and that the special education director can provide that opportunity. After attempting that, you may want to speak with a state education representative. Sometimes they can be helpful in getting a school to follow IEP’s when this is not occurring.
I would guess that it would be to your son's benefit to have someone in the school (counselor, resource room teacher, school psychologist…) to be open to learning more about the difficulties of TS. They could be instrumental in having an in-service provided or in having all teachers watch one of the videos mentioned above. There are many resources on this website that can assist them in being more knowledgeable.
You state that teachers are saying that your son needs “to be held accountable” for his lost work, work not turned in, notebooks left at school, etc. Typically when people say someone “needs to be held accountable” they are referring to negative consequences or punishment. However when this does not work, we adults need to examine why the difficulties continue in spite of negative consequences. Again, it very well may be due to this complex disability. He requires support until he learns strategies that will allow him to be more independent with these tasks. A strategy that has assisted many students is to have one teacher who the student reports to during the day and, if possible prior to leaving school. This person helps them organize folders, etc., assists with homework and time management, consults with other teachers in determining homework priorities, is responsible for knowing what the homework assignments are, and provides strategies and techniques that help the student learn methods that work for them specifically. It is common for a student to turn all of his homework into either this teacher or to the main office as soon as he arrives at school and either the teacher or another adult places the homework assignments into the appropriate teachers’ mail boxes.
Support staff must be understanding, creative and flexible when providing the support that works for each individual student. Reducing the student's stress is extremely important as stress generally contributes to increased symptoms. Anxiety of any kind will typically make obsessive compulsive symptoms worse. Instead of punishment or negative consequences, educators must determine what can be done FOR the student PRIOR to the difficulties rather than what they will do TO the student AFTER the difficulties have occurred. Punishment does not teach and your son needs to be taught strategies and techniques that will assist him in managing his disability and provide life-long skills.
Question: Is staying after school a good idea for students with TS in order to get their homework done before coming home?
TSA answers:
It depends on the individual child. Some students with TS would welcome the opportunity to stay after school in order to complete homework and to receive needed support. For other students it would be brutal.
Many students with TS have stated that they see home as home and school as school – and never the twain shall meet. They benefit from receiving the necessary support as well as to be in the “school frame of mind” needed to get homework completed.
Other students need to get home quickly in order to release some of the tics that they have been attempting to suppress all day. Children generally do not like displaying tics as it makes them “different”, “standout” and can be socially embarrassing. They will use a great deal of energy to “hold them in” during the day frequently at the cost of being unable to focus and pay attention in class. Allowing tics to be expressed can be beneficial for various reasons:
· allows student to pay attention better
· reducing exhaustion at the end of the day from suppressing
· reducing likelihood of an “explosion” of symptoms when enter their home
· demonstrates that everyone is different and that it TS is nothing to be ashamed of
· allows other children to learn first hand that people have differences
· assist in teaching tolerance and acceptance of other people’s differences
For some students with TS, extending the day, either by staying after school or a long bus ride will very often extend the time when the student will attempt to suppress symptoms. It is not unusual for these students to have increased difficulties with academics at home and in school and increased difficult behaviors at the end of the day. By extending the day, the student is required to “suppress” or “hold in” the tics that much longer. Over time, this frequently leads to increased challenging behaviors at school, on the bus and at home.
Some children will attempt to “hold in” their tics as long as is humanly possible. It is not unusual for these children to have major difficulties after arriving home as well as an inability to complete homework of any kind. This sometimes results in a cyclical problem comprised of suppressing tics which increases stress. Increased stress results in an increase in symptoms making it even more difficult to suppress symptoms resulting in an even greater level of stress. For students with TS, it is critically important to reduce stress as much as is possible. This generally results in an overall reduction of symptoms that allows for greater academic, behavioral and social success.
Students' Difficulty With Self-Monitoring Behaviors
Question: I am just curious why these kids can't self monitor as well as typical kids. Is it as simple as they are working so hard just to get the average amount of work done, that they are stressed and it makes them go over the top?
TSA answers: Stress certainly contributes to an increase in symptoms as well as a decrease in self-control. For some children it goes beyond this, however. Frequently advocacy requires an explanation for behaviors that are not tics and appear to be purposeful misbehavior. The complexities of TS are difficult to understand. In particular, those behaviors that appear to be purposeful may in fact be due to the disability even though they are not "tics". We have found that the most effective method is to explain that TS is beginning to be recognized as being on the neurological spectrum that involves a part of the brain that is responsible for inhibiting behaviors. (This is easily understood if one thinks about blurting out, painful or socially embarrassing tics, obsessive compulsive behaviors, etc.) The result is a reduced ability by the individual affected to inhibit behaviors whether they are known to be appropriate or not. In effect, it becomes extremely difficult to use the inhibitory skills that they have learned; the braking system in their brain fails. This inconsistent system failure may result in involuntary behaviors such as being disrespectful, making inappropriate statements, exhibiting behaviors that are not "socially acceptable" such as immature behaviors, emotional outbursts, silliness, contextual swearing, rage, oppositional behaviors, etc.
This can be compared to the difficulty we all experience when we occasionally become overwhelmed by a particular event that causes us to act in a manner that is not typical and may be seen as being "out of control". Think about how you would respond if you were hurrying to get to an extremely important appointment and you came out to find that your car had two flat tires. You may say things that under normal circumstances you would not say. At that moment, your mental braking system fails and your inhibitory process is not functioning in a normal fashion.
For children with TS, this phenomenon occurs more frequently, AND inconsistently. For instance, a student who is capable of completing simple Math may become oppositional if given a sheet of 100 questions at the end of the day. He is tired and becomes overwhelmed by the enormity of the task. Behavior that he would be able to inhibit earlier in the day is now expressed because his mental brakes are no longer functioning normally.
Difficult regulating responses may also occur as a result of a suggestion that the behavior is prohibited. As an example, I can walk past hundreds of park benches without feeling compelled to touch one until one of them has a sign indicating WET PAINT. My inhibitory process may become overwhelmed and I most likely will touch the bench. Thus by telling someone NOT to do something actually puts the thought in the person's brain and may result in the person responding in the manner that he has just been warned not to do. The suggestion makes it more difficult to inhibit the forbidden behavior. Consider a child who has repeated eye blinking tics. Is it helpful to continually remind the person not to blink? Of course not; it would most likely increase the eye blinking. This phenomenon can also be true regarding behaviors that are not "tics" for some people with TS. And to add to the confusion, there may be times that the child with TS can inhibit a specific behavior when told to and other times that they are not.
Some students with TS will have inappropriate tics or behaviors due to dysinhibition deficits and will result in causing them physical pain or extreme social isolation due to such things as inappropriate statements or vulgarity. If a student is demonstrating these types of behaviors, this is the time for the adults involved to help him with positive strategies and techniques in an attempt to modify these socially inappropriate behaviors. However, since symptoms are due to a chemical imbalance, it must always be remembered that modifying symptoms can fall anywhere on the continuum from being absolutely impossible to modify, to difficult to modify, to being successful. Imagine being in a formal restaurant when suddenly you have a compelling urge to scratch the bottom of your foot. Think of your response if someone told you to modify your need to scratch your foot by asking you to scratch your knee instead.
Understanding and support are essential at these difficult times. Choosing our battles is essential if we are to help children with TS. If students are involved in behaviors that will lead to being socially ostracized or resulting in physical self-damage, then it may be helpful to use positive and proactive strategies in an ATTEMPT to modify this behavior. By comparison, repeated clearing throat, occasional noises, a need to touch a book repeatedly, jerk an arm, and thousands of other symptoms, can and should be ignored.
Question:
We have been told that we have to limit 504 accommodations to 4 items. Is this ok?
TSA answers: Absolutely not. 504 accommodations are intended to assist a person with a disability be successful. Having said that, you will want to be selective in the accommodations you have written on the 504 Plan, only because if you request too many, teachers naturally become overwhelmed and you take the risk of having none of the accommodations being provided. Choose them wisely, but if your child requires more than 4, that is fine. For example, a student with TS could very easily have the following on a 504: - A safe place to go to in order to release tics - Separate location for testing - Extended time on tests - Classroom notes provided - Access to computers on long assignments, essays and test - Allowed to leave room to get a drink when student feels overwhelmed, anxious or in need to movement Those are just off the top of my head without knowing your child; the accommodations that you child requires could be very different. You may want to check out the Education/Education Strategies on the TSA website to see which accommodations would be appropriate. But there certainly is nothing that limits accommodations to only 4 (or any number for that matter). If the school says that it is there policy to only allow 4 - request to see that in writing. If they produce something in writing, you can point out that school policy does not hold precedence over federal laws protecting people with disabilities. Let us know if we can be of further assistance.
Question: I just attended a TSA general membership meeting and was thrilled to hear Ms. Conners speak there! She indicated that by going to the website, questions could be asked...hopefully this is the correct place!
My son is about to start his second year at a private school. We placed him there for his first year of Junior High last school year with the assurance that the school could meet his needs as a child with Tourette's and ADD. As a teacher myself, I was surprised to learn HOW MUCH I needed to learn about private schools and their obligations in the area of special education. I requested a review of his 504 Plan four times during the year and was told that it wasn't necessary- the school would just respond to my requests for accommodations as needed. Rather than the proactive approach I prefer, the year was spent making REactive communications. My question- what exactly are we as parents entitled to when it comes to private schools? We keep getting the sinking feeling that he could actually be receiving more services had we kept him in public school. Also- is there a place to go for this type of information in writing or is it entirely up to the individual school?
TSA answers: You are correct in that public schools sometimes can provide more services and support than a private school. It becomes a complicated decision, however, when you factor in that many private schools have smaller class sizes which allows for individual attention by the teachers and understanding on the part of his peers and teachers. To answer your question, the private school (if it receives any Federal funding) would be responsible to provide under the Section 504 of the Rehabilitation Act of 1973, as amended, 29 U.S.C. § 794 (Section 504). You can find information regarding this on this TSA website under Education, Education Strategies. You might also want to look at the U.S. Dept. of Education, Office of Civil Rights website regarding Section 504 at http://www.ed.gov/about/offices/list/ocr/504faq.html. The following is copied from the site: "Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal funds from the U.S. Department of Education (ED). Section 504 provides: "No otherwise qualified individual with a disability in the United States . . . shall solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . . ." OCR enforces Section 504 in programs and activities that receive funds from ED. Recipients of these funds include public school districts, institutions of higher education, and other state and local education agencies. The regulation implementing Section 504 in the context of educational institutions appears at 34 C.F.R. Part 104.
The Section 504 regulation requires a school district to provide a "free appropriate public education" (FAPE) to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability. FAPE consists of the provision of regular or special education and related aids and services designed to meet the student's individual needs." You are on the right track in wanting to review the 504 Plan in a proactive manner rather than in a reactive mode. Preventing any difficulties certainly is the most effective way to avoid difficulties and problems from occurring and for misunderstandings between school, parents and student from developing. Most educators are not familiar with the specifics of 504 Plans and/or IEP's. You are doing the right thing doing research by contacting the Tourette Syndrome Association. I would suggest that, if you haven't already done so, to look over the information that Sue Conners provides on the this website under Education, Education Strategies regarding specific accommodations and modifications that are appropriate and necessary for students with TS. Good luck and if you would like further information, please do not hesitate to contact us.
Question: My son has Tourettes, OCD, Anxiety and ADD. He has social problems at school; especially with bullies. He has been bullied in one way or another since Kindergarten. However, he has never been hit, nor has he ever hit any one. Most of the bullying is name calling and threats. He just will not stand up for himself and ask them to stop or get his pencil back when they take it. Over the last three weeks, he seems to be getting picked on a lot by the kids calling him awful names. I do report these incidents to the principal, either by e-mail or by telephone. But, my son will not let me have him act on it because he is afraid if they know who told, they will hurt him or beat him up. I have also sent letters to the Special Education Director letting him know about the bullying. The principal said until (my son) exposes them, he cannot do anything about it unless he sees it first hand. Today, was my son's therapy session. We talked to the therapist about the bullying and he said that we should ask the school what kind of bullying policy they have?. What kind of training do the teachers, yard duties and individuals that deal directly with the children receive regarding bullying, and he also said that for the principal to want (my son) to tell on the boys is wrong. That just sets up (my son) for retaliation. His therapist also said that the principal and other campus individuals should have enough to go on just by what (my son) tells them and can at least call the boys in and talk to them. Do you have any advice for us?
I love your Education Advocacy Q & A and thank you so much for your most professional advice.
TSA answers: Thank you for contacting us and for the very nice comment regarding the Q&A site. I have been receiving more and more comments regarding bullying and unfortunately it sometimes results in the child who is being bullied in having a physical response to the students who are doing the bullying. It is very often the child with TS who gets punished while the students who bully are ignored. Check out this tsa-usa.org website under Education/Education strategies. Sue Conners has written an article regarding Bullying specific to students with TS that is informative and offers strategies. Students generally do not bully in front of staff and many children are afraid to report specific instances because the bullies will know who turned them in to the principal which often results in further bullying and teasing. I know of instances where the teasing and bullying became so severe that a 1:1 aide was assigned to be within sight of the student who was being bullied as protection but this is generally not an ideal solution. I have seen some schools be proactive and handle it in a generic manner by providing an assembly for the entire school population regarding bullying. In that way no one knows who the person is that is either doing the bullying or is being bullied but makes it clear to everyone that it will not be tolerated. This at least sets the stage for discussions with the students who are bullying even if the actual incident is not witnessed. You might be interested in a website that provides information regarding bullying. The home page is http://www.stopbullyingnow.hrsa.gov/index.asp and the specific page that gives suggestions for parents of students is http://www.stopbullyingnow.hrsa.gov/HHS_PSA/pdfs/SBN_Tip_3.pdf.
I like your son's therapist's suggestion of asking to see the school's policy on bullying. It is possible that they do not have one and will then develop one or at least you will be aware of what the school is suppose to do regarding bullying. There is a government sponsored training for school personnel that provides Continuing Education Units that your son's school may find helpful. It is at http://pathwayscourses.samhsa.gov/bully/bully_1_pg1.htm Good luck and continue to let your son know that you are there to support him in this difficult situation.
STUDY SKILLS OR RESOURCE ROOM SUPPORT
Question: My son is 14 years old and has just entered High School. We have had a very difficult transition so far. In the first three weeks I received eight E-mails from three different teachers. The complaints were for many issues including sleeping in class (drowsiness from meds), walking by and hitting tables, keyboards, etc. (tics), being unprepared (he also suffers from ADHD), etc. We decided to change his medication and it has so far had a very positive effect. However, his attitude is still not where the school would like it to be. He is still somewhat grumpy and argumentative, although in fairness to him, he is much calmer and much more cooperative than ever before.
He is currently receiving a D- in Science, a B- in English, and a D in Study Skills. My question is in regards to the Study Skills class. This class is my son's resource class. The purpose of this class is for the paraprofessionals and tutors to work more individually with IEP students at the end of the day to help them complete assignments, work on projects, prepare for tests, and reinforce concepts learned during the day. I asked them what the Study Skills grade consists of and how it is measured. Their response follows:
“As far as Study Skills goes, the students are graded daily in five areas...1)attendance (being on time with all their materials) 2)participation (being an active participant during classtime) 3)following class rules 4)attitude 5)time on task.”
Is it fair to grade a child with TS, OCD, ADHD, depression, anxiety, and mood disorder on some of these issues? It seems to be counter-productive to grade a child with a disorder on issues that are often beyond their control. I also don't think that this class should be graded at all, but rather just used as an additional resource. Until this year, my son has never received a grade for his resource time. Thank you for any information you can provide on this topic.
TSA answers: Study Skills or resource room classes can be very beneficial for students with TS particularly when a student has related issues of OCD and ADHD. Frequenly students with TS have deficits in Executive Functioning which is why they can benefit from study skills classes. Executive Functioning are necessary for the individual to produce output. If the student has a deficit in this area, as many students with TS have, it effects their ability to organize and plan which interferes with homework production, long term assignments, being prepared for class, being able to quickly and effectively participate in group settings and make short term and long term plans. Many people compare Executive Functioning to the "CEO" of the brain - it is the function that processes information, develops and uses strategies to correct mistakes, learn from mistakes and to plan effectively. Your son will require these skills as he moves into the adult world and therefore it is important that the school use the study skills time to help him to learn strategies and techniques that will assist him in the areas that you mention
(1)attendance (being on time with all his materials)
2)participation (being an active participant during classtime)
3)following class rules
4)attitude
5)time on task.”
Grading students on these tasks may be an effective strategies for motivating SOME students to develop techniques to achieve these goals, however consequences and reward system (as grading is) do not typically work for students with TS. Instead, the school should be looking at WHY your son is not succeeding in these areas and develop a positive and proactive system that will assist the school personnel and your son in determining what strategies and techniques will work for him in developing these skills. Giving him a "D" for not being successful in the above areas will not "teach" him the techniques and strategies he will require as an adult.
They may want to consider looking at your son's difficulties from the viewpoint of a Functional Behavioral Assessment. Sue Conners and I have produced a guide that assists school districts in conducting FBA's for students with TS and providing positive support for difficulties that are preventing the student from being successful. This can be obtained by contacting the Tourette Syndrome Association, Inc. either by phone or e-mail.
The school must see your son as a student who has a complex disorder that involves behaviors that may appear to be intentional when in reality they may very well be a result of the disorder. TS is often difficult to understand. There are numerous pamphlets, video's articles, etc. available on the TSA website that will assist the school in understanding positive approaches to teaching a student with TS. Good luck at your meeting today.
Question: My son is 14 years old and has had tourettes for many years. He also has adhd, ocd, anxiety, etc. He is very difficult to live with and to be around. He had an episode in which he vocalized the word "nigger" very loudly in the school's bathroom. Since then, we had a very difficult time getting him to attend school. He missed part of 3rd quarter and all of 4th quarter. I am very upset because the school system insists on graduating him to the 9th grade. I think because of his immaturity and lack of going to school, he should be held accountable and therefore be in 8th grade. I feel as if I am fighting a losing battle. What are your feelings? He is has tried many medications and he is currently on some now. I feel we are getting nowhere.
TSA answers: Thank you for contacting the Tourette Syndrome Association. As a mother of a son with TS and a person who has helped to support over 500 families of children with TS, I have some understanding of your frustration as well as your son’s difficulties. It sounds like all of you are experiencing a difficult time and I want to encourage you to become involved with the Tourette Syndrome Association and join a chapter near you. You can very often get the best strategies and support from other people who are experiencing similar difficulties. You are not alone with these difficulties and it is important to remember that neither you nor your son are to blame. Tourette syndrome and related disorders can be very complex and cause a variety of difficulties.
Your son may benefit from "social skills" classes either in or out of school. Many young people with TS, due to their neurological disabilities, have significant difficulties with social skills, and with demonstrating appropriate behaviors when dealing with peers and sometimes adults.
Your son has very difficult related disorders that add to his struggles and like many students with TS you say that he is "immature". This is not uncommon.
I would suggest you consider carefully holding your son back in school. There are many questions that would need to be considered first.
· Is he able to perform at the 9th grade level?
· Does he have difficult with written language and has the school provided him with support such as Notes provided, extended time, resource room or consultant teacher assistance, use of a computer, etc.
· Did your son’s school provide tutoring while he was out of school?
· Does your son have an IEP (Individual Education Progam) and does in list specific supports and strategies that your son can use to reduce symptoms and anxiety at school? (You might want to obtain the IEP manual written by Sue Conners that is available for purchase from our online store--Publication #E-123 The IEP for Students with Tourette Syndrome [A Parent's Handbook).
· Does your son want to repeat 8th grade?
· Was his refusal to return to school due to fear as a result of his having said the "N" word (which very well may be a vocal tic)? The fact that you said he yelled it when in the bathroom suggests to me that he may have been looking for a private place to release this vocal tic. His yelling it loudly suggests the possibility that he had been suppressing it for some time.
· Is his school prepared to provide him with a plan so that he feels safe?
· Is his school prepared to provide him with a plan to reduce anxiety?
· Are they providing him with the supports he needs in order to be academically and socially successful?
· Does he have behavior issues in school and if so does he have a valid Functional Behavior Assessment with a Positive Behavior Intervention Plan (read about these on this site). Many parents of children with difficult behaviors have found the brochure "RAGE – Repeat Anger Generated Episodes" to be helpful. (available available for purchase from our online store--Publication #M-357).
· Is he being inappropriately punished for symptoms?
· Does the school have a good understanding of TS. You might want to suggested that they have an in-service regarding TS if there is a TSA chapter near you that provides these. If not, you might want to suggest that everyone involved with your son view the video (#AV-12) by Sue Conners titled "A Teacher Looks at Tourette Syndrome".
I am more concerned with whether the school is or is not providing appropriate supports than having your son be held accountable. If he refuses to go to school – there is a reason and from my experiences with other students, I would guess that it is related to his anxiety. Having him repeat 8th grade without a change in the type of supports he receives will not help him learn how to manage his disability in a way that will help him to be successful now and as an adult. I would suggest you and if possible an advocate, meet with the school to discuss strategies and supports that will help you son be successful in the school environment
Question: At his past IEP meeting, I asked that at this point my son be classified OHI, since he has been diagnosed with TS and ADHD. I was asked by the committee why I wanted to classify him. My response was that he is diagnosed for 2 years now with TS+, and that he does receive special ed services, and that I felt all who come in contact with him should be aware that he is OHI whether it is for academic reasons or disciplinary actions. The psychologist at the CSE assured me that there was no need to classify him. I still don't understand why they want to keep him unclassified. Thank you
TSA answers: You are correct that people who are involved with your son for academic or disciplinary reasons should be aware that he has TS. In order to receive an IEP, however, his disability must be significantly impacting his academic performance. If your son's TS is interfering at all with his schooling (socially, emotionally, academically, physically) but not enough to warrant an IEP, you might want to consider a 504 Plan. Sometimes a 504 is sufficient but if your school denies an IEP, a 504 Plan will at least get him some accommodations and go a long way in getting started toward eventually receiving IEP services, if and when they are necessary. You might want to look on this website regarding IEP's and 504's. Is your son being disciplined? If he is then that is another issue and I would want to encourage you to request that a Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) (also discussed on this website) be provided. Sue and I have worked on a guide for schools which are available for a nominal fee in our online store.
Question: We spoke with the school about creating a proactive discipline program. Our son is 12, in middle school, and while his tics seem negligible (drugs), his OCD and ADHD symptoms get in his way. He's not a discipline problem but he does have problems with overreacting, etc. We raised their awareness that, as he grows and gets older, his tics will come and go and we can't really predict how they'll manifest. We want the school to make a plan that would be in place in the event he has a problem that might be disability-related. They suggested conducting a FBA and we're a little leery of 1)what they mean by that and 2)exactly how they'd do it since he doesn't really have any problematic behaviors at this time. Do they want to do it to establish a normal baseline for him so that if something comes up they have a procedure for it? I don't really have any sense from them that they really understand what a FBA is - just my gut feeling. I thought I'd look at what you guys have because we're going to another IEP meeting in a week. What do you think?
TSA answers: Regarding your school conducting a Functional Behavior Assessment - I think if they know what they are doing and if their intentions are truly for the benefit of your son - that it is a great idea. A Guide for FBA's and PBIP's is finished and hopefully will be available from TSA soon. The only reason an FBA should be conducted is to develop a Positive Behavior Intervention Plan (PBIP). Have you read over the article on this website regarding FBA's and PBIP's?
Let's say they want to address that your son frequently over responds to situations - by doing an FBA they will gather info regarding in what situations is he most likely to over respond, what task, with whom, in what environment, what time of day? etc., etc. That info is then used to develop a PBIP to help reduce this response. They may have in the PBIP that a social worker or counselor work with him on social skills or may use social stories to help him learn more socially appropriate ways to respond. It can also be in the PBIP that when a teacher notices him responding appropriately that some sort of reward (verbal or tangible) will occur.
It could be that he requires time to get out of his chair and move around. So on the PBIP, it could state that he has permission to get a drink of water. The behaviors do not have to be disruptive in order to require an FBA. Good luck and let me know if I can be of further assistance
Question:
My son is twelve and has ADHD and Tourettes. He has always been a behavioral problem, and now is getting angry and aggressive. He sees a doctor regularly and we change medication often. He is in a school that is supposed to handle ADD and kids with self control issues. We are spending a great deal of money there and feel like he needs a change. However, none of the private or Parochial schools that we can afford would take him. He seems to be annoyed by another child in his class who is mildly retarded and he hit him the other day. My son is not a violent child, but he is labeled now. We can not send him to public school in our district, because it is too far from our work and he can not stay home alone after school. Are there any laws that would allow him to attend school near our work? He could then be bused to my mothers house nearby until we get off work. I am also afraid to do this for fear his behavior would boot him back to our school district. I really fear he will not finish school at the rate we are going. He has been suspended at least one day a week for the last several weeks. Once for disrupting the class, another for arguing with the teacher. Several boys were suspended one day for throwing punches, that my son said was just rough play. And then a three day suspension for cutting up on a field trip... spitting toothpicks, playing in the water fountain and embarrassing the school in public. His most recent was for hitting the student who he said was pointing in his face and would not stop. What can parents do to help a child who is having so many problems? I fear one of us will lose our job if he keeps getting suspended.
TSA answers: As far as I am aware, there is no law that will allow you to force the school to have your son placed in a school that is near your work. Each state has different regulations, so you might want to check with a state education representative. Many state laws indicate the opposite and require that efforts must be made by the school to keep the student in his "home district" which is the neighborhood school that he would attend if he did not have a disability.
Regarding the suspensions - has the school done a Functional Behavioral Assessment (FBA) followed by a Positive and Proactive behavioral plan as outlined in the Federal Individuals with Disabilities Act (IDEA)? If they have not done one, request one in writing. Regarding FBA's the federal law states that "the IEP Team, subject to subparagraph (C), shall consider...in the case of a child whose behavior impedes his or her learning or that of others... strategies, including positive behavioral interventions and supports to address that behavior." It may require changes to the IEP or an addendum to the IEP outlining specific positive and proactive interventions intended to assist the student. I would highly recommend that you request that a person who is knowledgeable in Tourette Syndrome and ADHD be involved as many times symptoms are seen as "bad" behaviors and you will need someone who knows the difference. You might want to check with your state's Education Department to see if they have any State Ed. Memo's regarding FBA's that you could provide to the school as a guide. FBA's are relatively new and it is not unusual for school personnel to not be acquainted with the best methods of providing an FBA and a positive behavior plan. Many times students who display behaviors do so as a result of frustration caused by the inability to succeed in a specific task, such as handwriting. Is there a pattern to the behaviors? Is it always during the same class, in the halls, during a specific task, etc? Someone needs to find out specifically what occurs prior to the behaviors and is there a support that can be provided that will change the environment to one of success instead of failure for your son. You can find more information regarding Functional Behavioral Assessments at: http://cecp.air.org/fba/
Question: My wife and I met last week with school officials for our son's triennial IEP review. At the conclusion of our conference the school officials announced that he no longer qualifies under the IDEA, but they are willing to continue to make accommodations under section 504 of the ADA. We have not agreed to the change and the matter is currently on hold while he undergoes further testing. Our question is whether, and how, we should continue to advocate for an IEP.
Our son was diagnosed with Tourette's when he was seven and has associated ADHD problems. He is now10 years old, in the fourth grade, and is maintaining fairly good grades. In preparation for the review, he completed the WISC-III, Woodcock Johnson-II, school psychologist interview, and Bruiniks-Oseretsky Motor Proficiency tests. He did well with the one-on-one testing and interview and based on those scores and his acceptable academic achievement (though not commensurate with his high cognitive functioning), the school concluded he no longer qualifies for the IEP. We argued that his attention and behavioral problems aren't apparent in controlled adult-child isolated test situations. During the conference, in fact, his classroom teacher voiced her concern with his anger outbursts, failure to stay on task, head-banging, etc.. The school agreed to further behavioral testing (BASC and Conners), but we suspect the school is just going through procedural motions and nothing is going to change their minds to eliminate the IEP. We will have one more meeting, and probably one more chance, to change the school's decision once the behavioral test results are finished.
With a medical diagnosis of Tourette's, can the school withdraw his IEP? We believe the school will be fair in establishing 504 accommodations, but our real concern is with the future. Based on support group experiences, his behavior may worsen as he gets older and we do not want to forego the IDEA procedural safeguards prior to disciplinary action. How should we argue for maintaining the IEP, and how does one reinstate an IEP later if his classroom and academic behavior continues to worsen?
TSA answers:
Yes, schools can declassify even with a medical diagnosis. As a matter of fact, more and more schools are attempting to declassify students and to provide services under a 504. In some instances this has worked but in other instances, it is not sufficient.
An IEP program is state funded and is based on the state regulations and laws developed in response to the federal IDEA (Individuals with Disabilities Education Act). Under an IEP, a percentage of the costs of services provided for students are reimbursed to the school through state funding. A 504 program is based on the ADA (Americans with Disabilities Act) which is a federal anti-discrimination law for which no funding is provided to the school to cover the expense of the services provided.
It often is difficult to acquire or keep an IEP when the student is doing well academically, as is the case with your son. However, it also sounds like your son may have additional needs that are not being addressed if he is banging his head, is frequently off task and as reported by his teacher is beginning to display anger outbursts. If he has an outside counselor, a letter would be helpful from him/her stating that he requires extra support from a counselor at school, a consultant teacher, or other supports that will assist in reducing anxiety and stress that may be triggering the head banging and the outbursts. If they do go to a 504 plan, I would make sure that there will be a meeting in 4-6 weeks to determine if he is being successful with this plan.
I would also recommend that you request a meeting with all of his teachers and support staff to discuss the 504 plan to ensure that everyone has read it and understands the supports. It is also important to have meetings at the beginning of the year to answer any questions from his new teachers. If at any time, you feel that he needs additional support that only and IEP can provide, request a review of the 504 plan. If they say that they cannot provide these supports under a 504 plan, then write a letter requesting an IEP meeting. Document as much as possible as to why he needs additional services. Even though it has gotten difficult to acquire an IEP when the student is achieving academically, it is not impossible. The school must look at his social and emotional achievement as they affect his academic performance. He may be achieving good grades, but at what cost? It is often helpful to have a pre-IEP meeting with individuals that will be involved with the meeting to discuss in a more relaxed environment why you feel that an IEP is needed. This often assists in that everyone is in agreement and are focused on the same points when the IEP meeting takes place.
1) TSA, Inc. literature that defines TS and backs up your claim that this is truly considered a developmental disability.
2) An advocate/lawyer who specializes in DD. You may want to contact Legal Aid Services in your area for assistance.
3) Contact the TSA Southern California Chapter to see if someone can participate in the process with you.
California - Southern California Chapter (La Palma) TSA: 818-344-0948
email bcourdy@comcast.net
Question: What accommodations are allowed for the high school student with TS when he/she takes the SAT? Are the 504 plan accommodations which are in place, usually acceptable?
TSA answers:
Some 504 and IEP accommodations are allowed but some are not. I recommend that everyone who is considering taking the SAT's check with a representative for SAT's and get in writing each specific accommodation that is acceptable for this individual. They may need to provide additional information if they are refused the accommodations initially. To my knowledge there is no standard "list" of acceptable accommodations. I believe that it depends on each individual situation.
Can the School Retest after Three Years to see if a Modification is still Necessary?
Question: My daughter has had a 504 plan for a number of years. One of the accommodations in her plan is that she not be penalized for spelling mistakes. This year she entered the high school, and we just had our first 504 meeting. The psychologist says that she has to give my daughter a spelling test to see whether or not she can have this modification. She has already had that modification written into her plan for the past three years, so is that true? Can they take it out? She never needed a "test" before. What is the truth?
TSA answers:
A 504 Plan is based on the ADA (American's with Disabilities Act) and is an anti-discrimination law that prevents any agency that receives Federal funding from discriminating against a person for a disability. Since it is not a specific education law, as is IDEA (Individual's with Disabilities Education Act) that is the basis for IEP's, there are not specific educational guidelines for 504 Plans. Because of this there are no time frames as there are with IEP's for evaluations, reviews, etc. As far as retesting your daughter, they do have the right to determine whether this is a disability that continues to require accommodations. One of the goals of a 504 Plan is to provide support that will assist the student in learning strategies so that their disability does not continue to significantly effect a student's academic progress. If your daughter had an IEP, she would be tested every three years to determine her present level of performance and since it has been three years since her last 504 Plan, it seems reasonable that they retest her to see if she continues to require this accommodation.
If We Tell School, Will Our Child Be Placed in Special Education Class?
Question:
My daughter, eight years old, recently has been diagnosed with Tourette Syndrome. We are struggling very hard whether or not to tell her teacher. If we do tell her teacher, will the school automatically put her in a Special Education class?
TSA answers:
My experience as an advocate is that when teachers are informed that a child has been diagnosed with Tourette syndrome, the response is typically beneficial for the child. I do understand your concern and why you would hesitate to inform the school, but I am a strong proponent of informing school personnel, particularly if the symptoms are obvious in school or interfere with learning in any manner. Without knowing the diagnosis, symptoms are seen as behaviors and can be interpreted in many different ways. If the teacher sees the child as having a problem, they are more likely to provide support instead of punishing the child if they see him/her as being the problem. Compassion comes from understanding and without information, there can be no understanding. The teachers needs accurate information about TS in order to be able to support your child academically and socially. It is very common for teachers to approach me after an in-service presentation and express feelings of guilt for things they have said or for punishing a child with TS because they were not aware of the diagnosis.
Concerning whether the school would automatically place your daughter in a special education class, I would be surprised if this were the school's response unless your daughter has symptoms that are extremely disruptive to her education or to her classmates. If they do attempt to do this, there is a federal law referred to as "stay put" for situations similar to your daughter's. It states that if parents disagree with a change in placement being recommended by the school that the school cannot make this change without an impartial hearing. The school would need to prove to a hearing officer that supports in the typical classroom would not be sufficient to assist your daughter. It is important to remember that "special education" is a philosophy and not a place. Your daughter may benefit from being eligible for special education services that will assist her in school particularly as the work becomes more difficult and more demanding. The vast majority of students with TS who receive special education services receive these supports in the regular education environment.
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KATHY GIORDANO
A parent of two adult children with Tourette Syndrome Kathy Giordano is on staff as national TSA's Advocacy Specialist. Over the past fifteen years, Ms. Giordano has presented workshops concerning educational, behavioral, and advocacy issues related to TS and co-occurring disorders to over 14,000 individuals. Previously, Ms. Giordano had been chair of national TSA's Advocacy Committee.
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