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I’m a Tourette I’ve got lots of talents When Dr. Mary Robertson said that she would watch: I’ll soon become a successful man like to do more for people with Tourettes in Canada, I asked her to write a poem for the This was on Thursday, the day before she was I need to be seen and heard just like you to make the keynote address that would open our annual conference in Edmonton on Her presentation on Friday morning was the highlight of the conference, updating us on old topics and new developments. Her talks are success breeds success so I won’t go wrong always entertaining and she covered a wide range of subjects and packed a lot into a short time. Dr. Robertson concluded her presentation with so when I say the ‘f’ word; please don’t hear this poem that she had written overnight, for Dr. Mary Robertson is currently Emeritus Professor of Neuropsychiatry at the University College London (England) and Visiting Professor and Honorary Consultant to the Tourette Clinic at St George’s Hospital and Medical School, London. She is the author of 258 publications, has written 3 books on Tourette Syndrome and has had 81 poems published. She is also a member of the Professional Advisory Board for the Tourette Syndrome Foundation of Canada. February 2007 Page 1
How to Reach Us
London Chapter
TS Conference - Niagara Falls in September 2007 National Office
President’s Message
Thanks go out to Dr. Mary Robertson for our front page feature. Feel free to copy this poem and use it where you can, perhaps taking it to school and sharing it with teachers and fellow students or showing it to grandparents, aunts, uncles and cousins. TSFC London Chapter
Administrative Committee
Jennifer gives us an honest assessment of the book
she reviewed – “After Disability: A Guide to
President ………………. Ray Robertson Vice-president ………… Gerard Johnson Getting on with Life,” demonstrating that not every
Treasurer ……….……. Linda Johnson book with an interesting title should be read by Director at Large ……. Nadyne Gooding everyone. This is why we review books. As she states in her review, this book would benefit those whose lives are “significantly limited by” TS. TSFC London Chapter
Advisory Committee
Coincidently, Mitch, a close friend of Jennifer’s, was the victim of an auto-bike encounter, in late 2006 that left him with no ability to consciously control movement below his neck. His condition has improved and continues to improve, but still leaves Our Mission
him only able to move one finger centimeters in any The Tourette Syndrome Foundation of Canada is a single direction. Jennifer asked if she could keep this national voluntary organization dedicated to improving the quality of life for those with or affected by Tourette book to share with Mitch before returning it to our Syndrome through programs of: education, advocacy, library and of course she can. Mitch, we’re hoping self-help and the promotion of research. Please don’t “drink and drive” and please “bike Our Vision
All People who have Tourette Syndrome will lead quality lives as accepted and valued members of an informed, Dear Doctor takes a look at 5 commonly asked questions regarding TS medications. Dr. Mary Jenkins talks about a variety of medications, when to Regular Contributing Authors
In “What’s new in Research” Brigitte Heddle looks at a recent paper that asks is OCD really an anxiety disorder? The process the authors used to arrive at their conclusions and some of the intermediate results are very interesting. February 2007 Page
We have included a school speech written by 10 year old Brock Mazzocato that has been published in The Winston Gazette, a publication of Camp Winston. In After Disability: A Guide to Getting on with Life
discussion with Peter Copp, Assistant Camp Director at Camp Winston, he informed us that their waitlist Lisa Bendall, forward by David Onley has over 400 children and the wait is at least a couple Toronto: Key Porter Books Ltd, 2006 of years. So, if you are interested in Camp Winston’s program for kids with TS, contact them early. After Disability is a practical hand book aimed at Canadians who are new to a life with disability. It The Brake Shop team at CPRI was somewhat offers guidance on the type of everyday matters surprised at our printing of the article “Discipline which are simple for non-disabled people to navigate, Made Easy” in our August 2006 newsletter. In a but which demand much more thought and effort for collaborative effort they have responded to the “1,2,3 those afflicted with life-altering conditions. Magic” approach to children’s behaviour issues. The author, Lisa Bendall, has decades of experience in the area of disability advocacy, primarily from One of the programs the CPRI Brake Shop has made working as the editor of Abilities Magazine. She has available for families with TS is called “Give Me a written this book to provide a basic information Brake.” We have heard many good things about this package to answer all the questions she regularly program, so, when Lisa Jacobs, a member of our chapter, added her kudos about the program, we asked her to “put it in writing.” She did and we have Statistics Canada defines disability as a condition her story in this newsletter. Thanks, Lisa. where “everyday activities are limited because of a health-related condition or problem.” The book is Once again we have included our schedule of not specifically written for people with TS, but those upcoming Bingo events. If you ever wanted to help with strong symptoms of TS, OCD, ADHD or other people with TS without a lot of training or associated disorders may well fall into this specialized knowledge this is a great opportunity. designation. Most of the information provided is, however, aimed at mobility impairments such as We Get Letters – This is exciting! We received a Spinal Cord Injury, Multiple Sclerosis, Arthritis or letter to the editor from a reader with comments about our November 2006 feature article “Our Actions—Their Futures.” The writer suggested that The book provides invaluable information on setting some areas of the article were meant more for people up your life to achieve the most you can under your with physical handicaps and didn’t necessarily apply particular limitations. It discusses topics such as to kids with TS. We’ll include the letter in our next assistive devices and technology for mobility impairments; practical renovations for your home to provide easier access; financial considerations such If you would like to tell us what you think about an as tax exemptions, workers compensation and article in one of our newsletters, our newsletter in benefits; equal opportunities for employment and general or even just about TS, put it in writing and education; how to navigate the systems of accessible transportation; interpersonal issues such as dating and parenting with a disability; and how to carry on your Along with some other shorter stories and a couple of advertisements, that’s our February 2007 newsletter. One of the most helpful elements in the book is the contact information section at the end of each chapter. Public and private associations and businesses that provide services and information are listed by province and nationwide, such as the February 2007 Page
Accessible Housing Society in Calgary, the Parenting With a Disability Network and the Centre for Books are also listed, as well as informative websites such as NEADS, an online job registry for people This letter is in response to the “1-2-3 Magic” book with disabilities, and the Online Occupational summary which appeared in a previous instalment of After Disability is highly recommended for those While our team very much applauds the efforts of sufferers of TS whose lives are significantly limited TSFC London in disseminating a wide variety of by the disorder, or for others who suffer from approaches to parenting and treatments for TS and its associated disorders, we feel compelled to caution your readers against accepting any and all of these ___________________________________________ practices as gospel without a healthy dose of scrutiny. This holds true for approaches also read in Today’s Parent, heard on Oprah…or taught in our clinic for that matter, which is why our Self-Management Group includes an adult-only session where parents Our Chapter has raised over ten thousand dollars to and teachers alike can debate the relative merits (or help families with TS since we began running bingos potential liabilities) of the practices we endorse. This is not to say that some approaches are “right” Bingos provide a way for people who want to be and “effective”, and others are “wrong” and volunteers and help others with TS but only have a “useless”. What we ARE saying is that different few hours each month to contribute. It doesn’t children exhibit ‘bad’ behaviour for different reasons require hours of preparation or hours spent doing (e.g. poor behaviour versus a skill deficit), and reports after the event. Just set aside 3 - 4 hours each different approaches are optimally suited for each of month and if it can fit into your schedule, call us and “1-2-3 Magic” is without doubt an excellent approach for some children, parents, and issues. It is not, in our estimation, a helpful tool for dealing with “leaky brakes” though (chronic deficits in ability to self- regulate movements, noises, attention, impulses, thoughts, emotions, etc.). This opinion is in part created from our clinical experience – innumerable families that have come to our service citing “1-2-3 Magic” as a shining example of what HASN’T worked for their family. It is also in part created from our basic theoretical model of the “Brake Our TSFC Bingos are at Lucky Days Bingo, Shop”. For example, an approach that assumes opening a dialogue with your ‘irrational’ child is We can use your help from 5:45pm to 9:30pm. counterproductive, assumes a child who is incapable of insight into his/her skill deficits and is not in need If you are interested in helping other families with TS of empathy for his/her situation. An approach that by working at a Bingo event contact us at: assumes a child WILL stop themselves at the count of “2”, assumes a child who is even CAPABLE of stopping him/herself in the moment. An approach that hangs the stress of an impending consequence February 2007 Page
over the child’s head at the moment of defiance assumes two things: it assumes a child whose skill deficits will not worsen with stress and it assumes Maybe you noticed, stared, giggled, questioned or that the child isn’t already motivated to stop this wondered “Brock, why do you blink so much?" Funny, behaviour. Finally, an approach that instructs a because I asked myself the same question before my parent to be more calm and deliberative in his/her doctor talked to me and my family. My mom thought my parenting approach assumes a parent who does not eye lashes were too long and asked the eye doctor if she have the same genetic predisposition towards “leaky Good morning judges, teachers, Mme Gamble and fellow students. Today I would like to talk to you about Tourettes Of course, ultimately we recommend that you consult Plus Syndrome. I chose this topic because I was just with your own mental health professional before diagnosed in the summer of 2004 with my mom who also choosing ANY approach – your own team will know has it. When the doctor told us we had this mom and I your family’s individual factors and needs best. It is had no clue what they were talking about as do many of for this reason that our Family Resource Centre you probably. I think it is important for me to tell others offers a disclaimer on all of its literature and videos about it so they can understand me and not feel like they have to stare and giggle or wonder – “what is that guy A lot of times I do things that I cannot control. yup. like In collaboration with the CPRI Brake Shop team blinking my eyes, or shrugging my shoulders. Some people swear or make silly sounds. Maybe even twitch their head. Not only do I do some of these things but it makes my brain play tricks on me, and I cry for no reason or even get angry. A lot of times I get upset because I don't want to feel this way and I don't know why I do but I am learning to deal with it. My medicine helps me lots. “I get upset a lot because I don't want to feel this way and I don’t know why I do, but I am learning to deal with it.” It was really strange how it all happened to me. One day I got really, really, really angry and can't remember what happened. Mom and dad told me that I got really upset and started to do things that I never did before like punching, kicking, screaming and I even picked Mom up and pushed her off of me. When we saw the doctor, mommy, daddy and grandma talked and talked and talked to the doctor. I swear I did not think we were ever going to 2007 to review financial reports for the year leave that place. He told them that I had Tourettes Plus 2006 and to elect officers for the following and that when I forgot what happened that is when I had a “rage" attack which made me get very angry. Finally we were sent home to research this disorder and these are nominations for the positions of President, Tourettes Syndrome is a nerve disorder. It means that Vice-president, Secretary, Treasurer and/or when I was born some of my nerves in my brain were criss-crossed and so it sends messages to some parts of made at least 10 days prior to the meeting. my body to do certain things which are called “tics". The Plus meant that I also have other disorders which are all a part of it, like Obsessive Compulsive [Disorder] which means that I do certain things over and over again like when I go to bed my bed has to be in a certain way before I can be comfortable or even lining up all my toys in a certain way before I can play with them. The other is February 2007 Page
Attention Deficit [Disorder] which means that I can only concentrate on things for a little bit and then I need to take a break because my brain gets tired so usually when I do my homework it takes me 3 or 4 times longer than Dr. Mary Jenkins answers some commonly asked questions everyone else because I can only do it for a little while at a about medication treatment for Tourette Syndrome time. This happens a lot at school when I am in class because if someone does something even as little as taps Consideration of medication treatment for a child or their foot I lose track of where I am and focus on that. adult with Tourette Syndrome involves a detailed medical assessment and identification of the key Hyperactivity is another disorder that sometimes gets me problem areas. Medications may be used to treat tics, in trouble because sometimes I get a little carried away and get really super silly and dad or mom say “Boo, time attention-deficit hyperactivity disorder, obsessive- to slow down a bit" but sometimes that can spin the other compulsive disorder, anxiety, depression, and way and I get really sad and cry and cry and cry for aggressive behaviours. In all cases, medication is nothing at all… that part is not too nice. The last thing is only one part of the treatment plan. A number of anxiety which just means that I get panic attacks which medications have been well studied and much is mean sometimes my body freezes and I feel like I can't known about their effectiveness, indications, and move or that someone is squeezing me really tight and won't let go. Have you ever felt like you have to sneeze and can’t or you tried to hold in a cough but it drives you bananas and you do it. Well, that is what my tics feel like. When is medication treatment “recommended”? Tourettes is something I was born with. I find it easy to talk to my mom about it because she knows what I am The final decision to use medication follows a feeling and can help me out a bit. At first I felt sad, a little detailed discussion with the physician and patient. embarrassed and different from everyone and I did not Many factors must be taken into account including 1) want anyone to know because I did not want them to laugh at me. Now, because I belong to a group {where} the severity of the problem, 2) the impact that the tics everyone has it and I find out a lot of things, I kind of feel or behaviours may be having on the person’s school, special having it… hey… who gets the chance to go out of work, family, social life, and overall quality of life, 3) town every three months to see their doctor and go the interaction of medication with other medications, shopping and miss school…I DO!!!!!!! Really Mr. Brand I 4) the potential for the medication to control the symptoms, and 5) the potential side effects of the Anyways, that's pretty much me. So now when you see me doing these things you will know why and probably won’t even notice anymore because really it’s not that Medication is recommended for the treatment of tics bad. So if you have any questions come and ask me. if the tics are causing problems in any aspect of the Don’t be afraid. I’m just like you. “I’m just a kid!!” person’s life AND if he or she wishes to start treatment. For mild tics, often medication is not A speech given to his school. Brock is 10 years old. needed. For more moderate or severe tics, Reprinted with permission from “The Winston Gazette.” ___________________________________________ medication may be recommended depending on the degree of difficulty. If the tics are causing problems in the person’s quality of life, we would recommend medication – if the tics were not causing problems, we may not recommend medication. Ultimately, the A recent publication, listing tics and compulsion, decision to start or not start medication is up to the included “brushing against walls and doorways when passing by” - - a favourite of mine. As I looked around the house for evidence of this, I found dark areas in a number of places where oils from the back of my arms have marked the walls. At one location, I Many times I am asked for a medication to make the happened to glance down, and found the same tics “go away”. Although we continue to search for evidence left on the wall by Montgomery, our 5 year the ideal medication to treat tics, the quest continues. old, 15 pound, grey, longhaired, house cat. Is this None of the tic medications are a cure for the disorder. When tic medication works well, we expect February 2007 Page
it will lessen the tics to the point that they are great deal of distress and pain for the person and the manageable or more tolerable, but it will not make purpose of medication is to relieve some of this the tics “go away”. Often on hearing this distress. If the medication is causing side effects that information, especially in cases of mild tics, patients make someone feel “different”, then that is probably In conclusion, careful evaluation and consideration must be taken before starting a medication to treat Many medications are used to treat tics. The most Tourette Syndrome. Although we have discussed commonly used medications include Clonidine medications, this is only one piece to the overall (Catapres), Risperidone (Risperidal) and Pimozide management of the disorder. Education, counseling, (Orap). In addition, many other medications have and behavioural strategies are all important been well studied and found to be effective including Metoclopramide (Maxeran), Olanzapine (Zyprexa), and Haloperidol (Haldol). Other medications such as Tetrabenazine (Nitoman) have been found to be useful, but have not been as well studied. The choice of medication is determined by the severity of the Parent Self-help Meetings
tics, the presence of other problems (such as inattention), and the potential side effects. In all The London Chapter of the TSFC hosts monthly cases the risks and benefits of medication must be parent Self-help meetings from 7pm to 9pm on reviewed. The medications with the fewest side the second Thursday of each month, except for effects are generally not as “strong” and so may be prescribed for milder tics. Some medications, such as Clonidine, have been found to be helpful in Will medication for Attention-Deficit Hyperactivity Directions: Go south on Rectory Street to the end The short answer is “No”. It was always thought the of Rectory. Turn left. You are now on Trafalgar medication for ADHD; in particular, stimulant Street. Madame Vanier is approximately 100-200 medication such as Ritalin, would cause tics or make tics worse. This question was examined in three well-designed, reliable studies in children with tics, Our Resource Library is available during started on stimulant medications. The studies meetings and books can be taken out on loan. concluded that stimulant medications do not cause tics. In most cases, tics were not increased by The Kids Klub meets at the same time as the stimulant medication and in some instances; Parents Meeting. (Please see our website stimulant medication resulted in improved tics. This www.tourette-london.ca for a list of rules for Kids improvement was thought to be due to the improvement in ADHD symptoms. In a few cases, there was a brief, transient increase in tics, and then the tics returned to the baseline level. Will the medication make me a “different person”? The goal of starting medication in Tourette Syndrome is to improve the person’s quality of life. In many cases, the symptoms of Tourette Syndrome cause a February 2007 Page
In an article published in the Journal of experience anxiety to varying degrees. On this issue Psychopharmacology in 2006 [20(6) (2006) 729-731] there is disagreement to what role anxiety plays in written by David Nutt and Andrea Malizia, the OCD. The authors go on to say that if various authors are taking a look at a debate in scientific syndromes that have anxiety as part of its definition circles regarding OCD. The authors of this article are analyzed it becomes difficult to separate them look at it from the perspective of what medicines are unless they are grouped into separate families. The authors warn that at this point not enough is known about the differences and similarities between various The debate stems from some researchers who anxiety disorders and caution against splitting the challenge OCD as an anxiety disorder. It has been suggested by some that OCD is an impulse control disorder or a habit disorder rather than an anxiety The point of this whole discussion of whether OCD is an anxiety disorder or not is to determine what Back in 1967 OCD was one of the first anxiety disorders to show response to antidepressants (shown The authors conclude by saying that it can still be in study by Fernandex and Lopez-Ibor). At the time argued that there are considerable similarities it was thought that this meant OCD had an between the anxiety in OCD and other anxiety association with depression. Then other anxiety disorders and the reasons for OCD. The authors feel disorders also responded well to antidepressants that OCD may be a complex mixture of anxiety including panic attacks. By 2003 in a study by Nutt mixed with behaviours and habits, but definitely that and Ballenger it was mentioned that all anxiety “the anxiety itself is similar to that seen in the other anxiety disorders and responds to the same treatments.” The authors go on to predict that a The authors write that OCD is different from other anxiety disorders both in some symptoms, such as benzodiazepines may be more helpful in the early ritualistic behaviour, as one example, and its stages of what they call danger-related OCD, “when association with tic disorders. Furthermore, OCD the rituals are less established and anxiety is more can be caused by immune related attacks. Brain GAD-like (I am not sure what GAD-like refers to), imaging studies have also found over-activity in a benzodiazepines might be more helpful than they part of the brain that is not over-active in other would be later in the illness when anxiety relates to anxiety disorders. It is mentioned that effective drug prevention of rituals. It might also predict that treatment and psychotherapy and a particular kind of benzodiazepines would be more useful in danger- neurosurgery can have a positive impact on OCD. than desire-related anxiety generally.” The authors Yet, the same type of neurosurgery has been used in admit that the data on use of benzodiazepines is old Sweden for panic disorder and with good results and goes back to 1991 and 1993 and are asking reported. These findings have caused a certain readers of this article if they are aware of newer data amount of interest in the possibility that OCD may be an impulse control disorder or a habit disorder rather than an anxiety disorder. The authors mention a Now, you ask why write an article about whether study by Bartz and Hollander from 2006 as an OCD is an anxiety disorder or not? Why is that example of researchers putting forth good arguments relevant for us, who either have OCD or have a loved one who has OCD? Isn’t it only relevant for the doctors who prescribe the medications? My answer The authors, however, state that if OCD is eliminated to those questions is that it is definitely relevant for from the group of anxiety disorders other issues arise. both the patient and his/her families, because we are First of all it is a fact that many patients with OCD working together with the doctors on finding the right February 2007 Page
treatment for the patient. This gives us the obligation medication that was geared towards impulse control to educate ourselves as much as possible about the and not usually used for OCD, as far as I know. But those were the issues we were dealing with: a boy who suddenly seemed to give into any impulse that My son has OCD and Tourette’s and had for a few entered his head. Well, it seems to work. So if we years done well with the medicines prescribed for all, not just the doctors, educate ourselves on various him. All of a sudden these medications seemed to medications and what symptoms they have treated stop working and our son fell apart and could successfully and where science is heading we stand especially not cope with school. We had to re- in a much better position of helping the patient evaluate the treatment for our son together with his choosing the right treatment whether it be in the form specialist. In the end we opted for trying out a of medication, therapy or other treatments.
____________________________________________________________________________________________ The CPRI Brake Shop service for Tourette Syndrome & Associated Disorders presents For the family member (including the adolescent child), educator, spouse, friend, neighbour, bus driver, babysitter…or anyone else invested in learning more about Tourette Syndrome and its associated conditions (Obsessive-Compulsive Disorder, Sensory Processing Dysfunction, Attention-Deficit/Hyperactivity Disorder, oppositional-defiance, Each week is devoted to a different topic: “leaky brake” disorders and their misperceptions sensory issues/cognitive-behavioural management review, and panel of experts (professional, parent, child, supports) Various “CPRI Brake Shop” team members will present these topics. Time for questions and networking is allotted. Each spot is reserved for a particular attendee, and successive sessions assume past information. Hence, you are encouraged to attend all sessions.
Annual fall and spring courses offered. Enrolment is without charge. To reserve a spot for the next available 6-week programme beginning April 4, 2007, call February 2007 Page
Our son Matthew was diagnosed with Tourette's Syndrome 3 years ago at the age of 9 and a half. He also has ADHD. Matthew's tics are not too severe 2: How do I know that my beaker is filling? and have been managed with medication since his diagnosis. Over the past year or so, however, we have experienced increased rage and frustration The program also uses Dr. Ross Green's approach attacks. We were having problems dealing with these attacks and trying to diffuse them before they occurred. Matthew was also having problems dealing Each week there was a review of the previous week with these explosions. That's when CPRI came to the and then we built from there. Session 3 involved identifying what fills my beaker and that's when the boys came alive. They got to draw all the things they We found out at our monthly Tourette meeting about feel before, during and after an explosion. It was the a program at CPRI called 'give me a break'. It is a best session I think. Week 5 was the adult session self management group for children with Tourettes only and we were fortunate to have Matthew's and their parents to attend. The course runs over 9 teacher attend also. She also found the program very weeks, with week 5 being an adult only session. We were unsure about the course at first, because of the school Matthew would miss (the class runs on I think Matthew got quite a bit out of the program, Tuesday from 9:30 to 10:30 am), plus he is not more than anything we have tried so far. It was also always a willing participant in discussions. an eye opener for me. I was able to personally relate to much of the topics being covered. We all have a The program was wonderful. Dr. Duncan and the 'beaker' and different things cause it to fill and staff put us right at ease and made everyone feel overflow. Learning techniques to empty the beaker welcome and included. The group is small, only 6 and reduce the overflows has made a noticeable children. They all had Tourette's and other associated difference in our family. We have been trying to disorders, so could relate to each other. The premise continue with all the good stuff that we learned. of the program was simple and easy to relate to. Things are definitely better around our house and I They use the 'beaker' analogy to identify the level of would recommend the program to any other families frustration the child is experiencing. The 3 main experiencing rage/anger related to Tourettes or other behaviours. It is well worth the missing of school .
____________________________________________________________________________________________ CPRI Brake Shop:
Putting The Brakes On Sleep Difficulties Because we can accidental y ‘train’ our bodies to have a number of ways to improve sleep hygiene. At the end of problems fal ing asleep, it is very important to practice this handout is a checklist with further ideas to assist you. good sleep hygiene to prevent this unintentional ‘bad’ learning from occurring. Children with ‘leaky brakes’ may So let’s give ‘em a brake!
have bodies that are more susceptible to this kind of learning. Good sleep hygiene can also make it easier for - Keep a regular sleep schedule. Don’t vary
children who are biological y predisposed to sleep bedtime/wake-up times by more than 1 hour even on difficulties to adapt to regular sleep schedules. Below are weekends, and stick to a set routine. Do the same things in the same order every time – you might even want to February 2007 Page
create a ‘script’ together so the words you share when - Bedtime Fading. Put some reverse psychology to use.
your child is in bed are the same each night. Structure, “You wanna stay up? Fine – stay up reeeally late”!
as a general rule, is always very helpful for children with Keep the activities boring (“this is what adults do when ‘leaky brakes’ – it fosters a predictability in their lives (and they stay up late”) and keep the child awake until they’ve therefore a feeling of control) that can be otherwise gone through the bedtime routine and been put into bed lacking given their poor control over their own bodies, at a time that is 30 minutes past when they would attention, emotions, and thoughts. This schedule should natural y fal asleep. The child is tired enough that putting have a child in bed before 11 p.m. and up before 8 a.m. him to bed is not a battle – and no fights equal no extra stimulation! Over time, this ‘re-trains’ your child’s body - No naps during the daytime. Instead, wear them
that bedtime is a time of relaxation and the bed is a out during the day. Exercise is good, but not right before source of relief for their exhaustion. Once this occurs, the bedtime because exercise arouses the body and raises bedtime can be inched back slowly (15 minutes at a time) your temperature. To fal asleep you need your body and eventual y to the desired time (or at least a time temperature to lower instead. One thing we know about where the child stil seems wel -rested in the morning). It the body is that it automatical y lowers its temperature is worth emphasizing that this is not intended to ‘trick’ the (making you feel drowsy) 4-6 hours after you exercise. Therefore, by getting the blood pumping through some sort of activity 4-6 hours before bedtime, we can get our - More reverse psychology. Oftentimes it is the stress
bodies to natural y prepare us for sleep right when we around WANTING to fal asleep that ironical y causes people to have problems fal ing asleep. They are trying too hard! One way to take the stress out of the equation - Beds are for SLEEPING in! The bed should be used
is to emphasize staying awake instead. Have the child for sleeping only – this wil actual y teach the child’s body
prepare for bed and get settled in, and then tel them how to prepare for sleep as soon as you are lying in this place important it is for them to NOT fal asleep. It removes the and at this time. Lying in bed for hours reading or eating confuses your child’s body, because now a variety of activities (some involving powering the body up, some - What if my child has Tourette Syndrome? If your
involving powering the body down) are now linked to the child experiences painful tics, a massage or warm bed. If the child frequently plays in his/her bed, this can bath/shower may help to relax his/her body. If muscles even train the child’s body to link activity with beds, are chronical y tight due to long-standing tics, chiropractic meaning that (s)he wil become stimulated rather than care may be necessary to correct any subluxations and al ow the body to be ‘re-trained’ how to relax. - Stimulation is bad! In order to al ow the body to shut
- What if my child is Obsessive-Compulsive?
down, sources of stimulation need to be avoided in Does your child complain that his/her head won’t stop preparation for bedtime. Avoid fights shortly before lights long enough for him/her to get to sleep? One technique out. Caffeine is a stimulant, and so no colas, Mountain to experiment with is the use of a TV in the bedroom. Dew, teas, coffee, or chocolate in the late afternoon or Sometimes a television program can serve as a distracter evening should be permitted. As a rule of thumb; long enough for the child’s body to relax and drift off. For eliminate these items from the child’s diet 6 hours before this strategy to work, certain components are very bedtime. Final y, is the room too loud or too bright for the child to fal asleep? Remember that your child may have ‘leaky brakes’ over his/her senses, and so sounds - - Use a television equipped with a timer that can be and/or light in the room that wouldn’t bother you wil set to turn off after a specified time period (e.g. an hour). That way the child is not awakened later in the night by the noise. If this technique works for your - ‘Graduated Extinction’. Decide how long you are
child, the amount of time the TV is left on can be going to wait before you check in on your crying child, and stick to it. Don’t pick your child up or otherwise reward your child for those behaviours – just go ‘in and - - Choice of show is crucial: it should be a low- out’ long enough to ensure everything is al right. stimulation show (i.e. without lots of explosions and Increase this amount of time each night over many excitement). It should also be very predictable, either nights. Because this plan means that NO ONE sleeps wel because the structure of the show is always the same for a few nights, you might choose a weekend/holiday to (like the way Law & Order always fol ows the same formula), or the content is familiar (a show or episode watched repeatedly). Knowing what’s coming next in February 2007 Page
the show is, in itself, comforting, and contributes to A final point: for the child who is genetical y predisposed to sleep difficulties, these techniques do not “cure” the - What if my child has Attention-Deficit
problem. Rather, they create an environment that al ows Hyperactivity Disorder? Al ow the need for longer-
the child to sleep in a regular schedule despite their than-usual routines. Given the problems children with natural tendencies. Light bulbs wil shine brightly until ADHD can have around regulating their energy levels, it is they burn out, as that is how they are designed to be – more important to ride their ‘waves’ (when their energy is only by attaching them to a timer wil they fol ow the low and they are nodding off, DON’T re-arouse them by schedule we set without need for intervention. For this running them through a routine). If your child is on a reason, you should not be surprised if problems re-occur stimulant medication, be aware that certain dosages at after some sort of disruption in the schedule (due, for later points in the day can interfere with sleep. Be sure to example, to an il ness or a vacation). Think of that speak to your physician and/or pharmacist about the disruption as being like a power outage on the timer – appropriate administration of this drug. just as the light bulb would revert back to its natural tendencies, so do these children. We must simply reset - Added bonuses – better brakes, fewer headaches!
the timer before we can expect the light bulb (or the One way to avoid power struggles around the use of child!) to again fol ow the schedule we desire. these techniques is to let children know “what’s in it for them”. Arguments around lights out can easily look to If you’d like more detail than what is provided here, a children like just another way an adult is tel ing them what good book to read is Sleep Better! A Guide to Improving to do. Assure them that this isn’t the case – not only wil Sleep for Children with Special Needs, by Dr. V. Mark their brakes work better the next day the longer they sleep (like a battery being recharged), but recent research suggests that using good sleep hygiene can reduce the 2004, Dr. B. Duncan McKinlay, Psychologist frequency and duration of migraine headache episodes (Bruni, Gal i, & Guidetti, 1999). ___________________________________________________________________________________ Speaking on:
Children Do Well If They Can
Collaborative Problem Solving:
Overview of General Model
This newsletter was produced for the London Chapter of the Tourette Syndrome Foundation of Canada by Ray Robertson and Gerard Johnson. Anyone wishing to make suggestions or comments about the content or if you would like to contribute an article for inclusion in the newsletter, please contact Gerard Johnson via email at: "The information provided on a particular medication and/or treatment is individual. Please consult your physician for the best treatment for you. Opinions expressed in the material printed in this publication represent the opinions of the author and are not necessarily endorsed by the Foundation, nor does acceptance of advertising for products or services in any way constitute endorsement by the Foundation. Every effort has been made to locate the copyright owners of the material quoted in the text. Omissions brought to our attention wil be credited in a subsequent printing. Grateful acknowledgement is made to those publishers/authors who asked that their ownership be noted." February 2007 Page

Source: http://www.tourette-london.ca/February_2007_Newsletter.pdf