Category Archives: Resources


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


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:

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,

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.

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:

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:

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:

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:

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.]


Caring for the Caregiver—Spotlight on Respite Services, Part 3: Respite Services in Central Canada (Ontario & Quebec)

Mother_and_sonThere are three respite service programs that are available across Ontario. “Community Care Access Centres”or CCASs offer services for children or youth who need at least one professional service that can’t be met on an outpatient basis but can be adequately treated at home. CCASs offer a number of Child and Family Services including personal support, physiotherapy, social work and speech and language therapy. If you would like to obtain any of these services, begin by contacting your local CCAS. A Care Coordinator will conduct a needs assess and work with your family to develop a service plan. They will also coordinate any services you require and provide referrals to other community supports.

For more information, please visit:

Special Services at Home” or SSAH is another government program that operates throughout Ontario. This program provides funding to families for special services either inside or outside the home. The amount of funding that a family receives depends on availability of services, existing supports, and the child’s needs. In order to qualify for SSAH support, a child or children must have a developmental or physical disability and live at home. The first step in obtaining SSAH support is completing a package that is available online:$File/1915.pdf

Families receiving funding from SSAH can access services from an organization called CHAPS or “Community Helpers for Active Participation”. CHAPS allows families to post ads about the help they need and to browse ads for available respite workers. To learn more about CHAPS services, please visit:

For more information on SSAH services, go to:

In Quebec, respite services are accessed through CLSCs or “centre local de services communautaires,” which offer referrals and direct services. There many CLSCs throughout the province. For example, to view a list of CLSCs click here: or search online for a CLSC closest to using the key words CLSC and your city or town.

For respite services for parents and home care services for child who require assistance with daily living, Services D’aide a Domicile de Quebec is an option. The organization’s website is:  Please note that it is only available in French at present.

Another potentially helpful organization is “Enfants hanicapes et leur families” which provides assessment, intervention and support services to families with disabilities. Families must first complete an assessment through their local CLSC and then following the results of the assessment they may qualify for funding for respite services from the EHLF. To learn more, visit


Ontario families have the option of using their respite dollars to send their child or children to summer camp. Camp Winston ( is one camp that is specifically for children and teens with complex neurological disorders. Another option is Camp Kodiak ( which caters to children and teens with or without ADHD, LD and high functioning autism.

For Quebecers in the Montreal area, “NOVA Montreal Children’s Services” may be helpful. To access NOVA’s services, families must obtain a referral form a doctor stating the nature of the child’s disability and the exceptional needs of the child. NOVA will then send a specially trained NOVA Home Health Aide to the family home to provide personal services typically done by the parent. This support is given up to a maximum of 6 hours per week and is based on a support plan developed by a nurse from NOVA.


Caring for the Caregiver—Spotlight on Respite Services, Part 2: Respite Services in Western Canada

Mother_and_sonThere are several respite services and supports offered throughout Western Canada. Below is a detailed description of each Western province’s government-based respite program followed by a list of other (either non-profit or private) respite services and supports.


Government-based Respite Support Programs

The Government of Alberta’s “Family Support for Children with Disabilities” or FSCD provides information, referrals, and funding for support services including respite services. Importantly, this program’s definition of “disability” includes neurological and mental conditions, which means that parents of children with TS and associated conditions may be eligible. To apply for funding, you must fill out an application form and attach medical documentation confirming the disability or disabilities. The child must be under the age of 18 and either a Canadian citizen or permanent resident.

To learn more about this program, please visit:

In comparison to Alberta’s FSCD program, BC’s “At Home Program” has narrower eligibility criteria. In order to receive funding for the respite services through the program, a child or youth must be dependent in three of the following four areas: eating, dressing, toileting, and washing. Funding from this program amounts to approximately $2400 – $2800 per year and is given either as direct deposit or reimbursement for respite expenses. After submitting an application (part of which must be filled out directly by a physician), an assessor will be sent to the family home to examine the child’s abilities in the four functional areas.

Take a look the program website, to access the application and additional information:

Saskatchewan’s government-based respite program has the most narrow eligibility criteria of all the Western provinces. In order to quality for respite support from the “Community Living Services Respite Program”, a child must have an intellectual disability. The application process includes filling out an application and taking part in a support needs assessment. The program is income tested, meaning families who earn over a certain amount, may not qualify for support.

The government of Manitoba also provides funding for respite services through “Children’s DisABILITY Services”. To quality, the child must have a mental disability, a development delay, autism, a lifelong physical disability that limits mobility or has either a high probability of developmental delay, a parent with a mental disability or a significant prematurity with medical or biological factors. Access to the services are determined on a case-by-case basis. To get the application process started, interested individuals must contact local Children’s DisABILITIES services: Winnipeg – or Rural and Northern Manitoba:


Non-governmental Respite Programs

1. Alberta

Between Friends – A Calgary-based organization that offers summer day camp for children ages 14-17; membership is $25 per person and $45 for a family

Renfrew Educational Services -  They offer a full-day respite program on Saturdays for children with special needs; based in Calgary

Camp He Ho Ha (Health, Hope Happiness) – a Seba Beach camp for individuals with any type of disaiblity that accepts applications from across the country

2. British Columbia

Langley Association for Community Living – Connects families with caregivers who are available for hire

Community Options for Children & Families, Victoria – offers in-home and out-of-home respite services for parents of children with physical or developmental disabilities, or a history of challenging behavior; fee for service

3. Saskatchewan

Camp Tamarack, Prince Albert – a camp for children and teens with one or more learning disabilities



Caring for the Caregiver—Spotlight on Respite Services, Part 1: What Are “Respite Services”?

Mother_and_sonMany different supports and services exist for exceptional children and their caregivers. Understanding what each service offers and whether you qualify to receive support can be confusing and time-consuming. This blog series will simplify the process by providing a concise overview of a particular type of service: respite programs. In addition to providing a concise overview of each program’s eligibility criteria, it will also list links to additional information. Part 1 will explain what respite services are, and subsequent entries will focus on respite program options in each province.

Part 1: What Are “Respite Services”?

The number of children diagnosed with a disability in Canada has increased in recent years and this has brought considerable attention to the topic of childhood disability supports and services. Families of children with exceptionalities may require a number of different supports over time (initial diagnosis, transitions etc.) and across different contexts (school, home, daycare etc.). Respite services are just one of the many supports that might be useful to a family with one or more children with a disability.

The goal of respite services is to provide parents or guardians of children with limiting conditions with some temporary relief from their care-giving duties. Many parents or guardians, whether they have children with or without disabilities, use informal arrangements to achieve this. They hire a babysitter, or ask a friend or relative to provide temporary care while they go to a medical appointment, take a break, or visit a friend.

Unfortunately, these informal arrangements are not always feasible when a child has one or more exceptionalities. According to the CanChild Centre for Childhood Disability Research, families of children with exceptional needs not only have a greater need for temporary care supports, they also tend to have greater difficulty making these types of arrangements. Public or private “respite services” are designed to fill this service gap.

For the purpose of this blog series, “respite services” will refer to services that provide caregivers with “temporary relief from the daily responsibility of attending to an individual with disabilities” (Reinhard, Bemis, & Huhtala, 2005 pg. 1). In the Canadian context, there is no one “respite service model” used throughout the country. Canadian Respite services take many different forms depending on their purpose, duration, staff and location (Pollock, Law, King & Rosenbaum, 2001).

Some support services for families of children with disabilities have the explicit purpose of providing respite; these services might have the word “respite” in their name (e.g. Toronto Respite Services). Other services have the same effect: they provide respite for family caregivers, but only as a by-product of performing their primary function (e.g. summer camp) [Stalker & Robinson, 1993].

Respite services can be either short-term or long-term in duration. Short-term services provide relief for a few hours at a time whereas long-term services provide alternate care for a week or more at a time.

The location of respite services varies. The service might provide temporary care in the family home while the caregiver is present or while they have stepped out. Alternatively, the service may provide care at an off-site location in the community.

Who provides the temporary care varies from service to service as well. While some supports and services employ paid or professional caregivers with special training, others may rely on volunteers and community members (e.g. cooperative models that may involve relatives, family-to-family support groups, or parent-cooperatives).

This blog series will highlight different respite service options across Canada. The series will not provide an exhaustive list of every respite option for Canadian families of children with disabilities. Instead, it will focus on government programs as well as popular private services. It aims to simplify the process of understanding what each service does and who qualifies to receive support. It will also include links to additional information.

Pollock, N., Law, M., Kind, S. & Rosenbaum, P. Respite Services: A Critical Review of the Literature. McMaster University: 2001.
Reinhard, S., Bemis, A., & Huhtala, N. (2005, January). Defining respite care [Discussion Paper]. New Jersey: Community Living Exchange.
Stalker, K., & Robinson, C. (1993). Patterns of provision in respite care and the Children’s Act. British Journal of Social Work, 23, 45-63.
Statistics Canada. Participation and Activity Limitation Survey 2006: Families of Children with Disabilities in Canada. 2008.

Look for Part 2 next week!

Resources TS Awareness

Tourette Syndrome: The Video Game

tourettesquestWhat if you could learn about what it’s like to have Tourette Syndrome while enjoying a video game experience? Well now you can! Introducing Tourette’s Quest, a fantasy/puzzle-solving game where you play a character with TS. And it really goes to lengths to simulate, metaphorically, the disorder’s symptoms. Says one review of Tourette’s Quest:

Encountering monsters, using your weapons and getting hurt will increase your stress level (quite understandably). As stress increases, it is more likely that a tic will occur. As described in the definition of the disorder, a tic is usually preceded by a prescient feeling—in the game, this is conveyed as a thought bubble. If you are about to blink, for example, an eye appears in a thought bubble and you know that in a few moments, the screen will go black for a second. It would be wise to be clear of danger when you see the eye in the thought bubble. Other tics include a hand spasm, where you use you weapons involuntarily; a leg twitch, where you jolt to the side, often running into harm’s way; or a cough, which can awaken sleeping monsters whom you then have to kill.

You can suppress a tic by pressing the space bar, but this will increase your pent-up stress and make future tics more frequent and severe. There are other mechanical aspects to the game, but they all contribute to maintaining this balance of stress level and tic management, while trying to traverse the dungeon without dying.

The individual behind this unique educational game is Lars Doucet, who, as you may have guessed, has Tourette Syndrome himself. Congratulations to Lars for helping educate gamers about Tourette Syndrome.

You can read a full review of the game here.

Resources TS Awareness

Your Brain Explained: A New, Free Resource From The TSFC

Part of the TSFC’s mission is to help individuals affected by TS through programs of self-help. That is why this week,  the Tourette Blog will focus on self-understanding, self-knowledge and self-awareness. Guest bloggers will include Jordan Etherington, Tina T., as well as Laura and Peter Locke. Getting to know yourself is a huge topic and the blog entries this week will only scratch the surface. The blogs are intended to get readers thinking and to share information. If you have something to say, comment away! If you’d like to be a guest blogger, please email

yourbrain_icontactHow much do you know about your brain? How it works? What it does? How it relates to TS?

On April 25th the TSFC added Your Brain Explained to its National Website to assist with these very questions.

Your Brain Explained is an interactive, multimedia-based learning tool located on the “Learn” menu on the main homepage.

Whether you are learning about TS and the brain for the first time, or you having been living with or around the condition for years, Your Brain Explained is worth a click.

Your Brain Explained touches on several important topics and concepts including:

  • What the human nervous system does and what it is made of;
  • What the cerebral hemisphere is and what its different parts are responsible for;
  • Where grey matter is and what it does;
  • The diagnostic criteria for TS;
  • Types and characteristics of tics;
  • The prevalence of TS; and
  • The particular combination of multiple risk factors thought to determine TS.

To use this new tool click here (

Your feedback is important!

Tell the TSFC what you think about this new tool by commenting on this entry or by emailing

Ask Dr. Ticcy Resources

Ask Dr. Ticcy: How do I support the caregiver of a person with TS?

Dear Dr. Ticcy,

HELP! My grandson has been diagnosed with TS complete with the Jekyll and Hyde rages which are overwhelming for my daughter to say the least. He is 6 and tells her that he hates her and wishes she was dead. He would like to stick nails in her eyes and so on. So, tics are one thing but these rages are frightening to say the least.

I am feeling helpless to help! 

He is on medication including one for his ADHD.

I don’t even know why I’m writing this other than as a mother and grandmother I’m feeling absolutely powerless so I can only imagine how my daughter is feeling. How can I help her?

Thanks for listening,
Concerned Mom/Grandmother

Dear Concern Grandmother & Mom,

I am very sorry to hear that you and your family are going through such a challenging time.

You mentioned that a physician diagnosed your grandson with “TS complete with ‘Jekyll and Hyde rages.’” I assume, though I am not certain, that you are talking about the neurological storms or rage episodes. The TSFC’s recent three-part blog series on the subject is well worth reading.

Your concern for your daughter, a mom whose son says he “hates her” and “wishes she was dead,” raises an important question: Who cares for the caregivers?

This question may seem straightforward, unfortunately, the answer is not. I cannot say “there is one organization that your daughter, and other caregivers like her, can go to sign up for ‘caregiver support.’”

Supports and services for caregivers are many and understanding what they are and whether you qualify for them can be time-consuming.

The Government of Canada has various forms of assistance that a caregiver may qualify for and each province has a different landscape of programs and supports as well.

As a result, the TSFC Blog will soon publish a series on caregiver support that will highlight some of the programs and supports for caregivers in each province as well as federally. Each entry in the series will provide links to the programs it discusses and a description of eligibility requirements.

Thank you for writing your message and for bringing attention to the issue of “care for caregivers.”

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 with the salutation “Dear Dr. Ticcy.”

Children/Youth Resources

Getting the Jump on Kid’s Summer Camps

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. In response, last summer we published a list of specialized, TS Plus-friendly summer camps in Canada. One member requested that we publish this list sooner next year, 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 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

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)

Camps in Saskatchewan

Camp Tamarack


Ask Dr. Ticcy Resources

Ask Dr. Ticcy: My Daughter Just Got Diagnosed, And I Don’t Know What To Do!

scared momDear Dr. Ticcy,

My daughter was just diagnosed with TS. I don’t know what to do. I am a teacher but I don’t have experience with TS. Please help!

Newly Diagnosed

Hearing that your son or daughter has TS can be confusing, and downright scary, for anyone, even those of us with a medical or education background!

What should you do?

First, take a close look at the Tourette Syndrome Foundation of Canada (TSFC)’s website

Since you are just beginning to learn about the complex condition that is Tourette Syndrome, you can be easily fall victim to information overload. This is why the TSFC website is helpful. The “Learn” section, accessible from the main menu, has many short and to the point information summaries.

Second, purchase or obtain a copy of the TSFC’s Handbook for Families. This is a comprehensive guide to all things Tourette Syndrome and it is written for moms and dads by experts and parents. You can purchase a copy online here.

Next, connect with your local chapter or resource unit. You can email them directly by getting their email at or you can ask the National Office to connect you by sending a request to No chapter in your area? No problem, let the National Office know, and they will try to connect you with the closest available volunteer.

If you would like “virtual” support, visit the TSFC’s online forum by clicking the “Forum” option at Signing onto the forum enables you to post questions, participate in discussions, and read about what other parents of kids with TS are thinking and feeling.

In terms of medical treatment, there are a few things to keep in mind…

You may want your son or daughter to see a specialist on an ongoing basis. If you do not yet have specialist appointment but would like to know of a specialist in your area, email

To learn more about possible treatments, take a look at the Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome, available as a free PDF download here or as a softcover book here.

A few points to remember as you start your journey of learning about TS:

  1. TS is not fatal! You cannot die from it!
  2. While tics may be severe now, many adults (though not everyone) experience less tics as they age.
  3. TS does not have to “hold” a person back—many people with TS are lawyers, surgeons, singers, dancers, computer scientists, teachers and so on. Individuals who do find that their disorder or combination of disorders affect their employment decisions still have many options. For example, a person with TS and OCD may opt for a work-from-home job to accommodate their conditions.
  4. You not alone: many other parents are in the same situation or have been in the same situation.

The TSFC is here to help you through this challenging time.

Let them know if you need help by calling or emailing. A staff member or volunteer will provide you with assistance directly and/or refer you to another organization that can help.

Best wishes to you and your daughter (or son for those of you with sons in the same situation as Newly Diagnosed),

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 with the salutation “Dear Dr. Ticcy.”