CPRI Brake Shop clinic: School
Questions:
- Not all school staff have the luxury of taking the, “Leaky Brakes 101” course you offer or attending a clinic consultation. Are there common rules for tics that can be shared? A common language? Boundaries to know concerning tics?
- We had a student with Tourette Syndrome in our school a few years ago and learned everything we need to know about this disorder then. We should be all set to handle any future cases of Tourette Syndrome that come along then, right?
- Do “leaky brakes” compromise learning? Or is this student underachieving simply because (s)he is lazy?
- Clearly this child has difficulty paying attention in class. That must mean a diagnosis of ADHD, right?
- Parents have requested that their TS child not be placed in a portable classroom. We understand why this request is a reasonable one when a child has sensory hypersensitivities (e.g. to noise), but this student is not diagnosed with any sensory processing dysfunctions. Should we still respect the request?
- Each year, should we meet with our child’s new teacher before school starts? During the first week?
- Sometimes it looks as though this student is not paying attention at all, yet he is able to tell me what I just said. Then when I ask him to sit properly, suddenly he isn’t following at all. This seems backwards. What’s going on?
- What is the overlap between TS and Learning Disabilities/Disorders?
- I want an Individualized Education Plan (IEP) for my child – can I do that instead of using medication?
- So if I shouldn’t be giving into OCD because that makes him stronger, is having an Individualized Education Plan (IEP) a bad idea? Doesn’t that just allow OCD to get its way?
- Why does this student act out more at the end of the day?
- What else should I know about the patterns ‘leaky brake’ symptoms usually follow?
- Does a ‘stress ball’ really help a child with ADHD? He just looks more distracted to me!
- Various accommodations our team put in place appear extremely helpful in providing remediation for this student’s challenges (e.g. an Individualized Education Plan, an Educational Assistant, a medication), but then once we remove these accommodations everything falls apart again. Why?
- I’ve learned from other Brake Shop materials that rewards and punishments are ineffective for managing ‘leaky brake’ symptoms, yet we use a token economy system in our classroom. What do we do?
- Should we hold this student back a year in school?
- How do we best transition our child with ‘leaky brakes’ from public school to high school?
Answers:
1. Not all school staff have the luxury of taking the, “Leaky Brakes 101” course you offer or attending a clinic consultation. Are there common rules for tics that can be shared? A common language? Boundaries to know concerning tics?
Some simple rules of thumb that would be important to share with all educators are:
- More attention to tics = more tics
- Tics will increase under stress
- Increased tics can be an indicant that stress and/or frustration is building in a student
- Punishing tics will only increase tics and is grossly inappropriate
Our clinic DVD, entitled, “Leaky Brakes: What They Are. What They AREN’T” is available for viewing (from the Special Education departments of catchment school boards), borrowing (via CPRI’s Family Resource Centre) or purchase (sold by the Volunteer Organization of CPRI at www.vocpri.ca). This 74 minute presentation can be shown at a staff meeting and will help staff to develop a common understanding and terminology. Lastly, school staff should be advised of this website; many strategy sheets, answers to questions, and audio podcasts are available for luncheon learning.
2. We had a student with Tourette Syndrome in our school a few years ago and learned everything we need to know about this disorder then. We should be all set to handle any future cases of Tourette Syndrome that come along then, right?
Wrong! An important thing to understand about TS (or, for that matter, the other ‘leaky brake’ disorders) is that each case tends to look quite different. This is because these disorders serve to take each person’s uniqueness (a sum total of many factors) and ‘amplify’ it by taking away internal regulation.
To put this in another way, a faulty braking system on a car doesn’t determine the direction in which that car is heading. It merely guarantees that the car will experience difficulty stopping at that destination. Ten cars might all have the same leaky brake system, but each one will cause its own unique problems depending upon where that car is.
If, for example, a person experiences a traumatic event this wouldn’t ‘cause’ Obsessive-Compulsive Disorder (OCD) nor would it mean that every person with OCD is going to have symptoms relating to traumatic events. Rather, each person with Obsessive-Compulsive Disorder is predisposed to get stuck on some kind of anxious thought – what the content of that anxious thought is (war, sexual abuse, germs, prayer, etc.) will vary depending upon each person’s unique circumstances (e.g. character, experiences, environment, background).
3. Do “leaky brakes” compromise learning? Or is this student underachieving simply because (s)he is lazy?
There are a myriad of ways in which leaky brakes undermine a student: so many that only a sampling is listed here.
With TS, if a student is attempting to suppress his/her tics this diverts a lot of resources into waging an invisible internal war. Furthermore, OCD is an anxiety disorder and high anxiety will also impede concentration (not to mention the direct impact on attention that the diagnosis of ADHD brings to the table as well).
Yet another impedance to achieving one’s true potential are the compulsions OCD demands of a student in order to satiate the enormous anxiety they are under. Things like making one’s writing look “perfect” or feeling pressured from within to count the number of words in each sentence the teacher utters are not uncommon symptoms these students endure. Writing perfectionism is that much more onerous an “itch” to satisfy when one considers that TS brings with it fine motor difficulties (leading to poor penmanship), and all three disorders (TS, ADHD, OCD) typically sabotage visual-motor integration.
Pile on top of that some “leaky brakes” over sensory information (e.g. leaving distracting noises unfiltered, making lights too bright, or making it impossible to ignore smells in the room and…well, you get the idea. All of these factors (and more) wrench these students away from showing what they would truly be capable of if they could only be free of this unrelenting plague of impulses and internal interruptions.
4. Clearly this child has difficulty paying attention in class. That must mean a diagnosis of ADHD, right?
Usually when a child is having difficulty paying attention we immediately think of ADHD, yes, but in fact OCD can cause significant attentional difficulties as well. High anxiety will also impede concentration by keeping one’s arousal high, or through preoccupation with an unresolved obsession. Mental compulsions (for example, a student counting the number of tiles in the ceiling of the classroom) are internal, are therefore ‘invisible’ to others, but outwardly may appear to be a daydreaming child. Whether your attention is skipping from target to target (ADHD), or is hijacked and ‘stuck’ on the wrong target (OCD), inattention is still the end result.
5. Parents have requested that their TS child not be placed in a portable classroom. We understand why this request is a reasonable one when a child has sensory hypersensitivities (e.g. to noise), but this student is not diagnosed with any sensory processing dysfunctions. Should we still respect the request?
As you’ve hinted at, portables can be louder which can become an issue when a child is sensitive to sound. However, if a child has phonic tics these sounds may also be somewhat amplified and harder for others to ignore. Furthermore, detached portables can make “Tic Breaks” more arduous and time-consuming particularly in winter. Given these factors, if there is a non-portable option each year for the grade this student is entering this seems like a reasonable proactive choice for the school to make.
6. Each year, should we meet with our child’s new teacher before school starts? During the first week?
Given the great potential for ‘leaky brake’ symptoms to be misunderstood as behavioural, our recommendation is that proactive information is always best. This also allows a teacher to become prepared him/herself.
Parents may wish to consider purchasing a copy of the TS Foundation of Canada’s “Information for Educators” guide at the beginning of each school year and giving it to the teacher as a gift. Educators are often ‘set-up’ by leaky brake disorders as well, in that they are not typically trained at all in these disorders. Understanding this fact, and approaching the teacher in a spirit of collaboration and empathy rather than entitlement, will likely pay back far greater dividends than the price of an educator’s manual.
7. Sometimes it looks as though this student is not paying attention at all, yet he is able to tell me what I just said. Then when I ask him to sit properly, suddenly he isn’t following at all. This seems backwards. What’s going on?
This is an astute observation to make. ‘Looking’ as though you are paying attention (e.g. sitting up straight and still with feet flat on the floor, hands in front, and eyes forward) requires a good motor braking system – in its absence, to consciously (and simultaneously) still so many areas of the body taxes attentional resources and paradoxically means that an attentive-looking student with leaky brakes is in actual fact probably absorbing very little of what is being said or taught. Conversely, simply allowing a youth to tic, fidget, doodle, or otherwise not consciously engage in battling the dyscontrol may lead to a surface impression of distraction but in actual fact frees up energy that can now be devoted to what is actually important in this situation – namely, internalizing what is being said.
8. What is the overlap between TS and Learning Disabilities/Disorders?
The currently accepted figure is that 22% of individuals with TS will fulfil criteria for a learning disorder; most commonly in the area of written expression, mathematics, and/or a Nonverbal Learning Disability (NLD). This overlap will be higher if the student has other disorders comorbid with the TS (e.g. ADHD).
9. I want an Individualized Education Plan (IEP) for my child – can I do that instead of using medication?
A formal IEP is a legal contract that must be adhered to. Under the Education Act, any child has free access to an IEP. While an IEP is an important addition to helping students with ‘leaky brakes’ cope with their diagnoses, it is not a substitute for treatment. Nor is it a panacea. In isolation, an IEP can not be expected to sufficiently accommodate for symptoms.
That being said, our team does very much promote the idea of IEP creation for our clients. A typical IEP for a child with ‘leaky brakes’ is comprised of accommodations (as opposed to modifications); ideas for what should be included are contained within our clinic handout, “School/Classroom Approaches”, found on the “Strategy Documents” page of this website.
10. So if I shouldn’t be giving into OCD because that makes him stronger, is having an Individualized Education Plan (IEP) a bad idea? Doesn’t that just allow OCD to get its way?
In general, a good IEP gives you what you need so that you can accomplish what it is you need to accomplish. When it comes to leaky brakes, typically club members are capable of the same level of work as everyone else but may need to do that work in a slightly different way in order to show it.
Usually the best accommodations to have on the IEP of a student with leaky brakes are ones that provide the flexibility to do the work in a way that best manages any leaky brake issues. Managing leaky brakes is very different from giving into leaky brakes. It’s the difference between giving someone with paraplegia a wheelchair versus agreeing to carry that person everyplace (s)he ever needs to go, and bringing him/her anything (s)he ever needs. The first is a valuable tool for the person to use which will lead to greater strength and independence. The second is a surrendering by that person of all effort and accountability, leading to a weakening of self and greater dependence.
In the specific case of OCD, an example of a bad accommodation might be to demand the teacher call all tests “assignments” so as to satisfy OCD’s rules and thereby temporarily decrease anxiety. An example of a good accommodation might be for the teacher to instead give some extra time for that student to ‘shift’ in response to certain triggering words (like “test”). The first example requires the teacher to ‘give into’ OCD. The second example requires the teacher to appreciate that on occasion this student will need to ‘boss back’ OCD, and to support that student’s effort.
Does your IEP support you in managing your leaky brakes so you can work to your greatest potential? Does it give into the leaky brakes? Or is it a little of both right now? Meetings with school support staff to review your IEP are an excellent opportunity to have discussions like this about particular accommodations and/or to make positive changes to the kinds of support you receive.
11. Why does this student act out more at the end of the day?
Despite all of the challenges described above, students with “leaky brakes” still just want to fit in, do well, and not get into trouble. Often, then, they will exert an enormous amount of conscious energy to “be normal” – to not let the tics out, to hold their attention in place, or to fight their obsessions. All of this, on top of the typical social and academic demands of a school day, requires an enormous amount of energy.
By the end of the day, these kids tend to be completely depleted – leaving their brakes “leakier” than ever and leaving them overstimulated, irritable, very symptomatic, and prone to “blow”.
With such a striking difference between the child’s morning and afternoon behaviour, teachers often wonder, “Which one’s the real kid”? The answer is that it is the a.m. child – this is who the child wants to be, is working hard to be, and would always be if the disorders disappeared tomorrow and internal demands were no longer so taxing.
12. What else should I know about the patterns ‘leaky brake’ symptoms usually follow?
Symptoms increase with stress (including excitement) and often decrease when absorbed in a task. Also, a ‘honeymoon’ period of a month or two often occurs in these youth immediately after the summer months or winter holiday – as the summer (or winter holiday) approaches again symptoms can escalate (due to a more long-term fatigue or drain, due to excitement, and/or due to any decreases in classroom structure at these times).
13. Does a ‘stress ball’ really help a child with ADHD? He just looks more distracted to me!
Youth with ADHD have to put a considerable amount of conscious energy into sitting still. To adopt the posture of “attentive student” (e.g. feet on the floor, chair on the floor, hands on the desk, eyes on the teacher) requires so much vigilance on the part of the student…there are often no internal resources left to actually LISTEN to what the teacher is saying! Additionally, sustaining this posture drains the student, so ultimately the brakes only become “leakier”, faster.
One “detour” for this is to provide the student with an approved “fidget” object. This object shouldn’t be something that would consume the youth’s mental resources (e.g. a video game, or something to read); rather it is designed to simply “bleed off” some of the dysregulated energy in a benign way (e.g. a stress ball or a doodle pad and pen). The end result is that, while paradoxically it seems as though the student is paying LESS attention, in actual fact (s)he is now less distracted by the hyperactivity and is MORE able to focus. This can be readily checked by the teacher to ensure the particular “fiddle” object chosen is a help rather than a hindrance.
14. Various accommodations our team put in place appear extremely helpful in providing remediation for this student’s challenges (e.g. an Individualized Education Plan, an Educational Assistant, a medication), but then once we remove these accommodations everything falls apart again. Why?
TS and associated ‘leaky brake’ disorders have more in common with developmental disabilities (in the area of inhibition) rather than a ‘behavioural’ problem. This has two important implications:
- Firstly, it means that there is no ‘fix’ or ‘cure’ for symptoms. Just as a paraplegic must continue to use a wheelchair to function, so must accommodations remain in place. Rather than focussing on ‘weaning’ accommodations, focus should be on how to allow the student to benefit from these accommodations more independently.
- Secondly, goals should emphasize successful and responsible coping, rather than complete symptom elimination.
15. I’ve learned from other Brake Shop materials that rewards and punishments are ineffective for managing ‘leaky brake’ symptoms, yet we use a token economy system in our classroom. What do we do?
Token economies offer many positives to children with ‘leaky brakes’ - the structure, predictability, consistency, and immediate feedback they provide are sorely needed for these youth. With some adaptation, token economies can continue to be successful even with ‘leaky brake’ students:
- Firstly, positive and negative reinforcement should be contingent upon effort rather than results. Rewarding or punishing ‘leaky brake’ behaviours is akin to attaching contingencies to walking in the paraplegic. It will likely cause frustration and destroy rapport and may even worsen symptoms (given that they are influenced by stress level).
- Instead, negotiations around problem behaviours should occur collaboratively with the student to determine how to best manage the symptom/issue. This collaboration should take into account that the behaviour is likely driven by a symptom not of the student’s choosing, yet still emphasize that other people’s needs or feelings are equally important and need to be factored in as well. Whatever the outcome of this negotiation, it should be the experimental solution (and not the symptom itself) which is exposed to the token economy system. In other words, positive and negative reinforcements are attached to efforts to engage in the trial solution that was negotiated.
- Lastly, emphasis should be on the structure, and the rewards aspects, of your token economy. Our clinic’s Treatment Philosophy handout (available on the “Treatment Services” page of this website) may aid in further understanding the Brake Shop approach in melding more traditional methods with treatments for TS and associated disorders. We hope this proves useful to you.
16. Should we hold this student back a year in school?
TokenThe most current research overwhelmingly states that holding a child back does not have the desired positive effect, and generally causes more problems than it solves.
Additional factors to consider: if the child is already anxious about being different from others, then failing them would only seem to confirm their fears (thus amplifying them). If (s)he is already anxious around FAMILIAR peers, then failing that student would surround him/her with less familiar students (thus amplifying this anxiety as well).
Generally, holding a child back might only be a preferred option if the child has absolutely no friends currently, picked up extremely little academic knowledge that year, and has an excellent relationship with her teacher.
17. How do we best transition our child with ‘leaky brakes’ from public school to high school??
First it is important to consider what the best school placement would be for this student. Aspects to consider include:
- type of programming offered (i.e. academic vs. applied levels offered, whether or not cooperative programs are offered)
- student atmosphere (i.e. potential for teasing or bullying)
- length of summer break
- potential loss of friendship and support networks (if (s)he attends a different school than the majority of his friends)
- distance to school (i.e. length of bus ride, time at which the bus leaves)
- prior familiarity of staff with this student (e.g. through summer meetings). This would include the special education staff
- the number of teachers to be involved with the student (generally the fewer the better)
- whether or not the school offers some courses for credit
Next, it is important to consider how to best transition the student “softly”. Opportunities to see the school, to meet his/her new teachers, to locate his/her locker, and to learn how to get from his/her locker to his/her various classrooms (all to take place before the first day of school) will be important.
Because of the increased need to be organized once in high school, training in the use of an organizer (like a DayTimer) is highly recommended. Visit www.lifesatwitch.com/helpful.html for hints on how an organizer can be used for individuals with ‘leaky brakes’.
Finally, it is important to consider how to best transition the staff to this student’s needs. A peer assembly is desirable; a staff presentation could also easily be scheduled for the same day.
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