Category Archives: Resources

Adults Deep Brain Stimulation Resources Tic Treatments

Deep Brain Stimulation, Part One: How Does It Work?


The use of brain surgery to treat TS receives a lot of media attention. This three-part blog series will give you up-to-date information about this treatment approach. Part one will explain how the surgery works and how it might negatively affect someone with TS. Stay tuned for parts two and three, which will be published on Tuesday and Wednesday.

DBS modelA common question about Tourette Syndrome is about how it’s treated medically. At present, there is no one-size-fits-all answer. How much medical attention or treatment a person receives for tics depends on how the tics impact them—whether they are physically painful and/or make it difficult to function. For fairly minor tics, education and support are often enough. More severe tics can be treated with one or more prescription medications and/or behaviour therapy.

For a small number of people with TS, prescription medications have little effect. Their tics are extremely severe and both significantly and negatively impact their quality of life. On top of that, their tics are resistant to medications.

For these individuals, a relatively new surgical approach, called Deep Brain Stimulation or DBS, could be a potential treatment. DBS refers to the direct delivery of an electric pulse to the brain to help moderate abnormal signals associated with TS. The electric pulse comes from an electrode that is implanted directly into the brain and connected to a pulse generator via a cable or lead (pictured). The lead and generator are also surgically implanted within the body, with the lead running down the neck and skull, and over the collarbone and pulse generator sitting in the upper chest. Similar to a pacemaker, the generator has a battery and computer that send electric pluses directly to brain via the lead. The device settings—the size, voltage and frequency of the electric pulse—are all adjustable. The key question is, does DBS have the desired effect of decreasing or eliminating tics?

Again, the answer is complicated. DBS received a lot of positive media hype with some headlines hailing it as a life-changing treatment or even a cure for TS. There have been some positive outcomes in some cases. Within the medical community however, the reaction is mixed.

DBS is controversial partly because it’s so new (not a lot of studies or cases exist) and partly due to questions about side effects and effectiveness. The Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome rates DBS as “Insufficient evidence to make a formal recommendation” for adults and “Not recommended” for children (see page 76 of the Guidelines for more information). These ratings reflect the lack of documented cases and studies on DBS as well as concerns that DBS benefits might actually come from natural waning of tics or the placebo effect rather than the device. Adverse effects like restricted daily activity due to energy loss, skin infection, nausea, vertigo and anxiety are also concerns.

As well, the surgery comes with risks. Current research estimates that infection due to DSB occurs in more than 5% of cases. The device has no blood supply. It or the electrodes can potentially damage a blood vessel, which can lead to bleeding or a stroke. DSB often affects one’s ability to get words out and it can worsen mood or cognition. In rare cases, suicidal thoughts result. Finally, depending on the way the procedure is performed, there may be an increased risk of problems with walking, talking and thinking.

For more information on DBS, stay tuned for parts two and three of this blog series.

Sources:

The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome (2012)

A Family Guide to Tourette Syndrome (2012)

Parkinson’s Disease: Guide to Deep Brain Stimulation Therapy (2014)

 

Advocacy to the Rescue Bullying Children/Youth Resources Students with TS

Supporting Students with TS+, Part 4: Guest Blogger Dr. Norm Forman


Teacher and Student at BlackboardThis is the final part of our blog series featuring the creator of the TSFC’s e-learning program Advocacy to the Rescue, Dr. Norm Forman. Read Part 1 herePart 2 here and Part 3 here.

Advocacy to the Rescue: Why We Need Rescuing

The parent training program in advocacy that I developed for TSFC is unique in Canada. Based on my book Exceptional Children — Ordinary Schools, it’s designed to “level the playing field” between the school and parents who have  children with special needs, particularly TS. It is accessed via a TS web-based distance learning platform in individual units on topics which include: IEPs, IPRCs, Legal Rights, Test and Assessments and General Principals of Parent Advocacy in the School.

The name of the program highlights rescuing. I receive calls from parents all the time describing their feelings of being “out to sea” and, in effect, asking for help in being rescued. Parents at school meetings often face difficulties when seeking changes to their child’s programs or services. School parents require resources and opportunities to network with one another to share their experiences and tips. They also need the opportunity to share their experiences in dealing with schools.

With this in mind I have helped develop a website which seeks to remediate the problems that parents encounter. The site, nse.zerofusion.com, is designed to offer a hands-on approach to problem-solving including such features as an IEP template so that parents can familiarize themselves before any meeting. It’s urgent for parents to prepare themselves in dealing with the schools by learning as much as possible about the system, how it works and how to manage within it. This is what school parent advocacy is all about. The TS training program presents the perfect opportunity to learn these important skills. It is done online and I am available to assist participants in the process.

ATTR_logo_smallPlease contact TSFC for more information on Advocacy to the Rescue.

Bullying Children/Youth In-Service Program Resources Students with TS

Supporting Students with TS+, Part 3: Frequently Asked Questions by Parents


Teacher and Student at Blackboard

How is Tourette Syndrome “identified” or “categorized”?
Tourette Syndrome is a neurological condition (sometimes referred to as a neuropsychiatric condition). It is a physical—not a behavioural or a mental health—condition. Tourette Syndrome is associated with other behavioural and mental health conditions because of the high likelihood of having additional conditions of these types. There are more people with TS and one or more additional conditions that could be categorized as behavioural, psychological, neurological or mental health than there are people with only TS. If a person has more than one condition, for example, TS and ADHD or TS and OCD, they can be categorized as having multiple exceptionalities.

Can my child ever be punished for symptoms of their TS or TS+?
You shouldn’t be punished at school for symptoms of your medical condition. For example, it would be ridiculous to think that someone might be punished for having a seizure. That said, sometimes it is hard to tell the difference between a symptom and an intentional action. You can take steps to help your son or daughter’s school staff become more aware of this potential source of confusion by letting them know about your son or daughter’s condition(s) via a letter from their physician. Ask the doctor to describe their symptoms in the letter if you think that would be helpful. You can request an in-service presentation, which will be delivered by a trained TSFC volunteer. You can also encourage your son or daughter to take responsibility for the outcome of their tics or other symptoms. They do not have to apologize for having a tic, however, they could still share in the responsibility for dealing with what happened because of that tic. This may mean apologizing for hurt feelings, for example. If you feel your son or daughter was wrongfully punished for symptoms of their medical conditions or condition, you can speak to:

  • The teacher;
  • The school principal;
  • A school board representative or ombudsperson; or
  • The TSFC national office.

What happens if I don’t want everyone at school to know about my child’s TS?
If you don’t want to disclose your child’s TS, then you don’t have to. However, disclosure does have advantages: it helps students better understand their classmate and it equips the school with complete information as they work to remove any roadblocks to learning. Disclosure can get the ball rolling on the process of building a special education plan/program. Ultimately, disclosure is a decision you make as a parent/guardian. If your child is old enough, you may wish to have them participate in the decision-making process as well.

Should I get them tutor?
That’s entirely up to you. You can always talk to your son or daughter’s teacher(s) for additional input. If you think this would be beneficial, you may wish to hire a tutor to assist with their school work. There is no rule of thumb.

My child’s medication (pharmaceuticals) has changed. Do I tell their school?
You can tell your child’s teacher or teachers, but you are not legally obligated to do so. This information is private, however, you can choose to share it if you feel it will be helpful. If you’re not sure, talk to the prescribing physician about it.

I’ve been asked to sign forms that give my doctor permission to talk to the school about my child’s conditions and treatment. Should I sign the forms?
You are not legally required to sign a form that gives your child’s education team access to information from their doctor. If you think it will be helpful, you may do so. Carefully read over the forms first before you sign and keep copies of the forms for your records.

I don’t like certain things in my child’s education plan/program. What do I do?
Discuss your concerns with the education team. As a parent or guardian, it’s normal to give input and participate in the education plan development process.  You are permitted to cross out items from the education plan before you sign off, however, this should be undertaken as a last resort and followed up with discussion with school staff.

My child has been suspended in the past, but they are doing better now and I don’t want that on their record. What can I do?
Talk to the principal of his or her school. In some provinces, you can request that the student record be purged. This means that past items are cleared out if they no longer have relevance to the student going forward.

What are alternatives to public school?
There are other options for schooling your child besides sending them to public school. The question is which one works best for you and your family. There are a number of considerations including cost and geography. There are also ways to go to public school without attending the way most students do. For example, a student might have a modified school day, do some home instruction, or obtain credits via co-op or summer school.

I am worried about cyber-bullying. What can I do about it?
Cyber-bullying is intentional, repeated harm inflicted on someone through electronic media such as the internet or cell phones. It includes using electronic devices to embarrass, exclude, harass, or harm another person. Common forms are text message bullying, email bullying, chat room bullying and bullying via instant messaging. Talk to your child to make sure they know that if they tell you about cyber-bullying they won’t lose their internet or cell phone privileges. Make it a rule that your child can only use technology in a respectful way. Report any threats of harm or violence to the police. Make sure that your child knows that they are a special, good person, regardless of what a bully says. Be a positive role model. There are many great anti-bullying websites out there including www.bullying.org.

Stay tuned for the final part of this blog series, featuring a guest blogger, which will be published later this week. Read Part 1 here and Part 2 here.

ADHD Bullying Children/Youth Coprolalia OCD Rage Episodes/Neurological Storms Resources SID Students with TS

Supporting Students with TS+, Part 2: School Strategies for TS, ADHD, Aggression & Sensory Processing Challenges


Teacher and Student at BlackboardPeople with Tourette Syndrome usually have at least one other condition (co-morbid or co-occurring conditions). Some students have multiple co-occurring conditions. A student’s education team can address the impact of these conditions using a strategy particular to that condition. Below are some examples for tics as well as strategies and approaches for “common co-morbids.” These strategies are not exhaustive, nor do the categories cover all possible conditions that will need to be addressed. For more information on education supports, please consider purchasing the TSFC’s Understanding Tourette Syndrome: A Handbook for Educators.

Accommodations for Tic Disorders

  • Ignore tics whenever it’s possible to do so.
  • Instead of a time-out space, provide the student with a safe spot—a place they can go to calm down and release tics. Do not use the Principal or VP’s office for the safe spot as this can be misinterpreted as punishment.
  • Facilitate a graceful exit to the safe spot. For example, giving the student an envelope that has nothing in it to hand into the office is a graceful way to leave the room.
  • When assigning preferential seating, put the student near the door so that they can exit more easily when they need to do so. This will help to reduce their anxiety, which in turn reduces the need to leave.
  • Avoid seating the student at the front of the class in the centre because this makes their tics more noticeable and potentially embarrassing.
  • Provide frequent breaks/opportunities to leave the classroom to allow the student to release their tics.
  • For socially inappropriate tics, brainstorm possible solutions with the student. For example, encourage the use of a tissue or cup for spitting tics or saying Ferrari instead of a curse word beginning with the letter “F.”

Assistance with Accommodations for Students with Attention Challenges like ADHD

  • Seat the student near the side of the class at the front so that a member of their education team can help them stay on task.
  • Give the student a quiet place to do their work.
  • Allow the student to use noise cancelling headphones or a headset with instrumental music.
  • Permit the student to move around while at their desk, in the classroom and outside the classroom. This includes providing movement breaks like trips to the bathroom or fountain or a special task in the classroom.
  • Structured yet flexible classrooms are optimal environments for children with ADHD. Changing tasks frequently can help provide flexibility.
  • Use an established hand gesture to assist the student in refocusing/getting back on task.
  • Allow the student to engage in a motor activity, or involve the student in a motor activity, when they are concentrating intensely (e.g., pencil tapping on a soft item, doodling, squeezing a soft ball).
  • Permit physical activity during the day. Do not punish a student with ADHD by taking away their physical education class, recess or any other physical activity or outlet.
  • Highlight items that the student should focus on in their reading (page, passage or chapter).
  • Use brightly coloured note cards for holding under sentences to assist the student in following along when reading.

Strategies for Aggression

  • Give the student opportunity for frequent breaks.
  • Provide the student with support in developing the skills they need to become aware of feeling increased tension. Next, involve the student in developing specific alternatives to expressing the increased tension as aggression. Use these alternatives to make a plan.
  • Consider why this is happening, keeping in mind that aggressive behaviours are often the result of unmet needs, frustrations due to not being able to meet demands placed upon them, inflexibility (student, teacher or both), touching a hypersensitive student, restraining the student, feelings of failure or anxiety, bullying/teasing, hypersensitivity to criticism. Also consider possible related disorders that may have been otherwise overlooked like executive functioning deficits, peer issues, difficulty with transitions, OCD, ADHD and sensory processing dysfunction.
  • In extreme cases, you may wish to consider modified day or tutoring in the home.
  • Allow choices that will empower the student and be creative when developing a plan (try to have a plan that gives the student a sense of accomplishment).
  • Try to avoid situations that will be difficult if possible/anticipated.

Supports for Students with Sensory Processing Challenges

  • Provide the student with the opportunity to leave the class early or later to avoid high traffic or crowded halls.
  • Allow the student to eat lunch with a few friends in a quieter environment than the cafeteria.
  • Permit gum chewing or eating of hard candy.
  • If a young student has tactile hyper- or hyposensitivity, place them near a quiet child who is unlike to touch them and to the side or back of the group near a wall.
  • Put students with tactile sensitivities towards the back of the line.
  • If a student has tactile defensiveness, do not surprise them with an unexpected touch. Approach from the front so that they have a visual cue that there is a touch coming.
  • For students with auditory sensitivities, adjust the proximity to noise (e.g., seat the student so that noise that could surprise is in front of them, seat them away from fluorescent lights, cover PA system).
  • If the student has visual sensory challenges, seat them near windows for natural light, avoid fluorescent lighting, reduce unnecessary teacher/student movement during lessons, and use highlighters and other colours to cue student about the location of materials.
  • Avoid perfume or scented lotions, smelly liquids, scented markers to assist students with olfactory sensitivities (be aware of the potential impact of cleaning product and science experiment smells).
  • Be nearby when students are exposed to a lot of sensory information.
  • Seat students with vestibular hypersensitivity at the front of the bus to assist with avoiding motion sickness.
  • Allow for movement at the desk via a seat cushion, ball chair or partially inflated camping pillow.
  • Provide additional support during transitions.

Have you or your son or daughter’s education team tried any of the strategies before? What worked? What didn’t? Leave a comment below.

Stay tuned for Part 3 of this blog series, which will be published soon. Part 1 is available to read here.

Children/Youth Resources Students with TS

Supporting Students with TS+, Part 1: Key Terms


Teacher and Student at BlackboardFor parents of children with exceptionalities like TS, OCD, ADHD and mood disorders, classroom strategies are a very popular topic. Parents are eager to understand how their child’s education team can help remove roadblocks to learning, but it is easy to get overwhelmed by all the information, terms, resources, and texts out there.

This blog series will help breakdown this information into easily digestible chunks. It is by no means exhaustive, but it will assist you in your effort to build a strong knowledge base. Part 1 is an overview of key terms. Part 2 consists of classroom strategies and specific supports for students. Lastly, part 3 will share answers to frequently asked questions.

Understanding key terms is always a good starting place when you’re trying to build a strong knowledge base. The word “modification” is important, though it often gets confused with the term “accommodation.” In fact, you may be surprised to learn that accommodations and modifications mean two very different things: Modifications change what a teacher teaches, tests and grades, whereas accommodations change how the teacher teaches, tests and grades.

For example, a modification might be having a student submit an outline rather than a whole essay. An accommodation would be allowing the student to have extra time to complete the essay. Modifications change the expectations. In this example, the student was expected to complete an outline rather than an essay. With accommodations, the student has the same expectations as everyone else in the class but is given additional supports to help them meet that expectation.

Another important term is Education/Program Plan. This is called different things in different provinces like IEP (Individual or Individualized Education Plan) or SEP (Special Education Plan). The idea of your son or daughter’s teacher having a “plan” or “program” specifically for them may sound complicated. After all, don’t all teachers “plan” out their lessons? Can’t they adjust things on the fly?

Well, maybe they can. But other reasons exist for having a written plan about how a school will assist a student with exceptional needs. For example, this gives everyone (parents, teachers, administration) a shared understanding of how the student will be assisted. The process of developing the plan or program will often help to unlock the funding that is needed to carry out the plan as well.

The contents of the Education Plan/Program are written by school staff and experts like psychologists in consultation with parents. It may include both modifications and accommodations or one or the other. To help the school create content tailored to the student’s specific needs, the student may undergo a psycho-educational assessment, or psycho-ed assessment as it is sometimes called.

A psycho-ed assessment consists of a series of tests conducted by psychologist. The tests usually focus on: learning style, ability to use language, reasoning skills, ability to do written work, ability to interpret and analyze visual material, and reading comprehensive, spelling, and math. In short, the assessment measures a student’s learning potential. Typically, a psychologist will gather information about the student through interviews, reviews of school records, observations and reports from parents and teachers as well. Keep in mind that because this assessment is so detailed, it can take several visits. If done through a school board or hospital it is free of charge, however, there are usually waiting lists. A number of private organizations will perform these assessments for a fee. Some extended health benefits or private insurance packages will cover a private assessment if the student has a referral from a physician.

A final important term is assistive technology. This term includes a number of services, devices, strategies and practices that help individuals with exceptional needs access school curriculum. It might include use of special computer software that types out the spoken word or reads the written word out loud. Other examples include digital recorders, alternative keyboards, spell checkers, pencil grips, raised-line paper, and paper stabilizers. Using assistive technology may be one type of accommodation that a student needs to do his or her best in school.

Do you or a family member use assistive technology at school or work? Is it helpful? Do you think that there any downsides to using the technology?

Stay tuned for parts 2 and 3 of this blog series, which will be published next week.

Children/Youth Resources

TS Plus-Friendly Summer Camps in Canada


Often staff at a typical summer camp are unable to accommodate children or youth with TS Plus, whose challenges may include OCD, ADHD, mood disorders, neurological storms/rage episodes and so on. We are publishing this list of TS Plus-friendly camps now, since many camps require early registration, and some even have waiting lists, such as Camp Winston in Ontario. So if you’ve thought of planning a summer camp experience for your young one(s) this summer, it’s best to start acting soon.

If you know of a summer camp that specializes in neurological or cognitive disorders that is not on this list, please let us know by emailing ken@tourette.ca and we will update it.

Camps in Alberta

TSFC Edmonton Chapter Day Camp for kids ages 8-10
TSFC Edmonton Chapter Day Camp for kids ages 11-13
Overnight TS Adventure Camp (TSFC Edmonton Chapter partnership with Centre for Outdoor Education)
Camp Amicus
Camp Bonaventure
Camp Health, Hope & Happiness
Camp Tamarack

Camps in BC

Eureka Outdoor Camp
Venture Academy
Zajac Ranch

Camps in New Brunswick

Camp Rotary

Camps in Nova Scotia

Camp Reachability

Camps in Ontario

Camp Concord
Camp Kennebec
Camp Kirk
Camp Kodiak
Camp Prospect
Camp Tamarack
Camp Winston
Camp Zodiac
Kinark Outdoor Centre
New Stride Day Camp
Ontario Pioneer Camp (Christian)
Rainbow Day Camp

Camps in Saskatchewan

Camp Tamarack

 

Ask Dr. Ticcy Resources Tic Treatments

Ask Dr. Ticcy: What About Relaxation Techniques?



imagesDear Dr. Ticcy,

Where can I find more information on relaxation techniques?

Thanks!

F.

Dear F.,

Great question.

Relaxation is important for everyone, and can be especially helpful to someone with Tourette Syndrome. Since stress, excitement, and anxiety may intensify or fuel tics, relaxation can assist with symptom mitigation. That is why non-pharmaceutical treatments like Comprehensive Behavioural Intervention for Tics (CBIT) and Habit Reversal Therapy (HRT) are often combined with relaxation therapy/techniques.

To learn more about relaxation techniques try:

 

1. CPRI Brake Shop Clinic

Video: http://www.cpri.ca/videos/Stress%20Techniques%20F.swf
Handouts: http://www.cpri.ca/uploads/section000162/files/handout_stress.pdf
http://www.cpri.ca/uploads/section000162/files/handout_relax.pdf
http://www.cpri.ca/uploads/section000162/files/breathing%20triangle.pdf

 

2. Dr. Leslie E. Packer’s website “Tourette Syndrome Plus”
http://www.tourettesyndrome.net/disorders/anxiety-disorders/relax/

 

3.The TSFC Forum
Try threads like these: http://www.tourettesyndrome.ca/showthread.php?7005-Teach-Yourself-Your-Child-Relaxation
http://www.tourettesyndrome.ca/showthread.php?5029-Relaxation-Techniques

 

4. Asking an Occupational Therapist or Another Trained Professional

 

Ask_Dr_Ticcy_LogoKeep the questions coming Canada!

Sincerely,
Dr. Ticcy

Dr. Ticcy is a pseudonym for the TSFC National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

ADHD Resources Tic Treatments TS Research

What Are Your ‘Tic Triggers’?


owenWhen someone talks about what causes TS, they’re usually referring to the underlying genetic factors that lead a person to be born with it. But when a person talks about what triggers a tic, that’s entirely different. They want to know the proximate or immediate cause of a tic.

So what does trigger tics? Do any patterns exist, or is it different for everyone? Well, to start with, it’s helpful to divide tic triggers into three categories: environment, ingested or dietary items, and mood/feelings.

When the Association for Comprehensive NeuroTherapy surveyed people about what triggered their tics, it’s no surprise that stress was the most common response. In addition to stress, anxiety, excitement (good or bad) and feeling sick or hungry are also known triggers or factors that can contribute to increased ticcing.

In terms of dietary or ingested items, common tic triggers include: caffeine, alcohol, sweets, sodas, artificial colours and flavours, certain foods like dairy, oranges, gluten, preservatives, monosodium glutamate, and dust and pollen.

For some (not everyone), ADHD medications can worsen tics. The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome states that when people first start taking Ritalin or Methylphenidate or their dosage increases, their tics may worsen. It also states that worsening of tics may occur with doses of Dextroamphetamine (Dexedrine or Dextrostat) that are higher than or equal to 25 mg per day.

Video games, light (flashing, bright or fluorescent), cell phone use, smoke or smoking, scented products, computer use, stadium or amusement park lights, watching TV or movies (especially in the dark) are also triggers for tics in some people.

What are your tic triggers? Do you know what they are? Do you ever record them? Have you ever tried to eliminate them? If so, did this reduce your tics? Please leave a comment below.

Artwork by Owen Moxam

Resources

Caring for the Caregiver—Spotlight on Respite Services, Part 4: Respite Services in Eastern Canada


Mother_and_son

There are a variety of respite program options in Eastern Canada including several summer camp programs. These respite programs are listed below by province along with a brief discussion of eligibility criteria, services offered, and links to additional information.

New Brunswick
The Government of New Brunswick offers a program called “Community Based Services for Children with Special Needs” or CBSCSN. Through this program, parents can obtain services or items to assist with providing care and extra support including medical transportation, medical and rehabilitation equipment, and respite. To qualify for this program, a child must be have a severe developmental disability that is life long and require daily assistance with everyday activities. Given this requirement, many children with TS may not qualify for this support.

To learn more about this program, please visit: http://www2.gnb.ca/content/gnb/en/services/services_renderer.200975.Access_and_Assessment.html#serviceLocation

Another option for New Brunswickers is a program called “Respite Care Services for Children with Special Needs,” which provides relief and companionship to children under age 21 with any developmental special need in Westmorland, Albert, and Kent counties. Through this program, families can schedule up to 48 hours of relief care per month. Their child will be matched with a volunteer who will provide care in the home or in the community.

For more information, visit:www.volunteergreatermoncton.com

New Brunswick’s “Camp Rotary” is a summer camp that accepts children with disabilities including TS. Camp Rotary is located in Grand Lake and has multiple summer programs available. To learn which program is best suited for your child or children call 506-458-8739.

Newfoundland
In Newfoundland, parents looking for respite should consider the province’s “Provincial Special Child Welfare Allowance Program.” To apply for support from this program, a family must have a child with a disability who is under age 18. This program defines disability as any mobility impairment, speech impairment, ADHD, PDD, psychological disabilities, and learning disabilities (MS, epilepsy, and movement disorders are considered a mobility impairment). A family must be able to provide proof that the disability or disabilities impacts the child’s daily life and requires special care. The program also takes the family’s financial situation into account when determining supports. A variety of services are available through the Provincial Special Child Welfare Allowance including residential respite, fees for childcare/preschool, home supports, transportation to medical appointments, financial support to hire home support, and childcare to enable employment. Families can access this program through their regional health authority. An application and home visit occur with the support of a social worker who will provide referrals to the appropriate services offered by the health authority. To contact the health authority office closest to you, check the numbers listed by region under the disability heading at: http://www.health.gov.nl.ca/health/department/contact.html#disabilities_services

Nova Scotia
In Nova Scotia, the “Direct Family Support for Children” program offers respite (in-home, facility-based, or day programs) as well as funding for transportation and medication. Children who live at home, are under age 19 and have a significant physical disability which causes functional limitations or a mild to moderate intellectual disability with a significant behavioural challenge, are eligible for support through this program. To apply for support, families must contact their regional office.

To learn more about the respite services in Nova Scotia, take a look at this helpful guide: http://disability.novascotia.ca/sites/default/files/Respite%20Guide%20draft%202%204%20August%2010%202012%20revised%20sept%2017%2012.pdf

Prince Edward Island
PEI’s “Supports for People with Disabilities” provides respite, community living supports and community participations supports to children with disabilities that cause ongoing functional limitations. Mental illness and behavioural disorders are excluded from coverage under this program. The disability must be developmental or physical for a child and their family to qualify for support. Families can apply by contacting the phone number that corresponds to their area. All numbers are listed here: http://www.gov.pe.ca/sss/index.php3?number=1018613&lang=E

Charlottetown’s “Camp Gencheff” provides summer camp program options between the end of June and August as well as respite programs during weekends in October and May. Camp programs are six days and five nights long and cost $125 for PEI residents. Their respite programs cost $150 per weekend.

To learn more about Camp Gencheff, email: info@campgencheff.com

Children/Youth Guest Bloggers Personal Stories Resources TS Awareness Volunteerism

Guest Blogger 10-year-old Sam Kaplun: Project Give Back


Display boardWhen I first heard of it, all that I knew about it was that I might have it! Tourette Syndrome. What the tic was that, I thought. My mom told me that she was worried about the fact that I might have Tourette Syndrome. At first, I didn’t really take her seriously because she worries all the time.

The first time it happened, I was 7 years old. I was playing Monopoly with my mom. I randomly had the urge to start saying some made up words. I began to say some of these weird words. That was when it all started. I had these verbal tics for a few months and then over the course of the next few years, varying disruptive tics intruded on my life and they still do today.

Around the same time, I was participating in a school play and I asked my mom if I could drop out. This was because my tics were making me uncomfortable and I didn’t want people to notice them. My mom encouraged me to continue, as I had already committed to the play. In the end, I was glad my mom forced me to do it because I enjoyed the experience and my tics were temporarily nonexistent while I was performing.

Except for my closest friends, I didn’t tell very many people I had Tourette Syndrome, as I found it slightly embarrassing. Things stayed like that until fifth grade (last year) when my class was assigned Project Give Back. This is a project that many students in grades four and five all around Toronto participate in. We choose a charity to present on to the class, and we play a little game about what the charity does.

Having Tourette’s, I automatically chose the Tourette Syndrome Foundation of Canada as the charity for my project. It just felt right. I explained what Tourette Syndrome was, and how it can affect your life. For another part of the presentation, I told my classmates that I did indeed have Tourette’s. The kids didn’t react badly at all. They just accepted it as if everything was normal. I didn’t feel embarrassed during my presentation, so it was then that I realized that I was starting to feel okay with telling people that I had Tourette Syndrome! No one is going to judge me just because I have this disorder.

My teachers and peers were very impressed with my presentation on the TFSC and Tourette Syndrome, and my teachers suggested that I show my presentation to other children to raise awareness about Tourette Syndrome. I thought this was a great idea, and I’m eager to present to other kids around the city. Raising awareness is important so that people know about Tourette’s and how it can affect one’s life. It also shows people that I’m not weird. I feel completely normal even though I have Tourette’s. It was not until quite recently, however, that I actually stepped up and decided that I wanted to advocate for people with Tourette Syndrome.

I hope that those of you who read this are inspired by the fact that I came forward and chose to speak about the fact that I have Tourette’s. If you have Tourette’s, I hope that you feel okay about having it. There’s absolutely nothing to be embarrassed about. We all have differences and it doesn’t matter. We are all people and we can still live happily together.

Sam Kaplun, age 10

[Ed. Note: If you'd like to help spread TS awareness like our amazing Sam, you can download and print educational posters on the TSFC's website here.]