Category Archives: Resources

Resources

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: http://humanservices.alberta.ca/disability-services/15663.html

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: http://www.mcf.gov.bc.ca/at_home/index.htm

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 – http://www.gov.mb.ca/fs/misc/loc/winnipeg.html or Rural and Northern Manitoba: http://www.gov.mb.ca/fs/misc/loc/ruralnorthern.html

 

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
http://betweenfriends.ab.ca/index.php/register-for-a-program

Renfrew Educational Services -  They offer a full-day respite program on Saturdays for children with special needs; based in Calgary
http://www.renfreweducation.org/docs/default-source/summer-programs/Summer_Programs_2013_-_Single_Page.pdf?sfvrsn=0

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
www.camphehoha.com

2. British Columbia

Langley Association for Community Living – Connects families with caregivers who are available for hire
http://www.langleyacl.com/

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
http://communityoptions.bc.ca

3. Saskatchewan

Camp Tamarack, Prince Albert – a camp for children and teens with one or more learning disabilities
http://members.shaw.ca/camptamarack/

 

Resources

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.

Sources:
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 tsfc@tourette.ca.

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 www.tourette.ca 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 (http://www.tourette.ca/learn-brainexplained.php).

Your feedback is important!

Tell the TSFC what you think about this new tool by commenting on this entry or by emailing tsfc@tourette.ca.

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.”

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.”

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 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

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!

From,
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 www.tourette.ca

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 www.tourette.ca or you can ask the National Office to connect you by sending a request to tsfc@tourette.ca. 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 www.tourette.ca. 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 tsfc@tourette.ca.

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 tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

 

Ask Dr. Ticcy Children/Youth Resources

Ask Dr. Ticcy: How do I deal with my child’s coprolalia?


Dear Dr. Ticcy,

How do I deal with my child’s coprolalia?

Thanks,
Perplexed Parent

 

Dear Perplexed,

First, let’s ensure that you and all of our readers fully understand coprolalia.

It is a type of vocal tic that involves involuntary utterances of socially inappropriate language, be it swearing or something politically incorrect or hurtful. It is not just a “swearing tic.” It may include but is not limited to commenting negatively on someone’s physical appearance and racial slurs.

This is not intentional. If I were to touch a hot stove element, I might say a bad swear word involuntarily. The same thing happens to a child with coprolalia. They say it without meaning to and often feel guilty for doing so.

Because the element of intentionality is absent, the meaning of the swearing or socially inappropriate language is not the same. That said, it is still appropriate to encourage a child to apologize for hurt feelings with the understanding that though they did nothing wrong, they are still responsible for the outcomes of their action(s).

Many parents are confused about when a child is performing a tic and when they are acting out. It is hard to tell in certain situations, and unfortunately, there is no definitive way to know for sure.

Here are some steps to assess the situation, which will help you to respond appropriately:

1. Talk to your child: ask whether this was a tic.

2. Consider the context: what happened right before the tic? Did you just tell the child they couldn’t go to the movies because their room was dirty? If so, it may not be coprolalia. Not every situation is that clear cut, however, so it is still important to consider lead-up events as this may help you to learn your child’s triggers.

3. Err on the side of compassion: it is better to believe that it is coprolalia and be wrong than the reverse. The reverse may mean punishing the child for something they had no control over.

Once you assess it to be an instance of coprolalia, consider the advice of author Ross Greene. Greene advises us to think about the why.

Why did the child swear?

Answer: They have a medical condition.

The answer to the why informs your response: the child has a problem—a medical condition—but they are not the problem themselves.

What should you do?

Work together on changing the words to something else. For example, instead of f—, the child could say Ferrari or fudge.

Allow the child to move to a quiet space where they can let their tics out without disrupting others.

Consider ignoring the words and move on quickly once the child has a chance to give a brief apology.

Teach the rest of the class or family members about the tics and learn to re-direct the situation as much as possible. For example, if you say pass the potatoes and the response is a socially inappropriate vocal tic, simply move on without drawing attention to the matter. Someone else can pass the potatoes if the child is still symptomatic or the child can pass the potatoes themselves.

Thank you for your great question, keep ‘em coming!

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.”

Ask Dr. Ticcy Resources Tic Treatments

Ask Dr. Ticcy: Can magnets help treat TS?


Dear Dr. Ticcy,

I heard that doctors are now using magnets to treat TS. Is this true? Is the treatment available in Canada?

Sincerely,
Curious

 

Dear Curious,

Low frequency repetitive transcranial magnetic stimulation (rTMS) is a relatively new procedure. It uses magnetic fields to simulate nerve cells in the brain. Doctors place an electromagnet on the scalp over the supplementary motor area. Next, they activate the magnet for short periods sending pulses of magnetic waves into the brain. The goal is to help to reduce tics through altering the rhythms in the brain. While the treatment is non-invasive, there is a risk of seizures particularly if someone has had seizures in the past.

This treatment was recently tested on individuals with TS in a clinical trial sponsored by the New York State Psychiatric Institute. It is also undergoing testing at several other facilities throughout the world including China and Germany.

Because this is a new treatment, the TSFC cannot endorse it at this time. The choice to undergo treatment is ultimately your own.

Your second question about whether rTMS is available in Canada does not have an easy answer. The TSFC has not been in contact with anyone who performs this treatment, however, this is one of the topics we are looking into for the upcoming National Conference on TS+ on September 26-28, 2013.

A search of the Internet indicates there are some medical centres offering this treatment in Canada, however, according their website, they offer the treatment for depression, OCD and other conditions, but not TS. To learn more, visit www.mindcarecentres.com.

A note about cost: rTMS is not covered by provincial health plans. A course of treatment is estimated to cost $5,000-$7,500 dollars. Extended insurance providers may cover the treatment on a case-by-case basis.

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.”

Children/Youth Resources Tic Treatments

Strategies for Coping with Tics & Compulsions in the Winter


This blog article, by RuthieP, was originally posted on New Jersey Center for Tourette Syndrome’s Teens4TS Blog and is republished here with kind permission.

So I was hoping to put off having to implement my usual winter strategies for a little bit longer, but it’s really getting cold outside where I live, and my usual compulsion/tic combo that gets bad in the winter is on a rampage. Every year in the winter since I was 4 or 5 years old, I’ve have a lot of issues with my lips and with picking.

Every winter is when my tics with my lips get really bad. Some of the things I do with my lips edge more toward the compulsion side of the spectrum, and some edge more toward the tic side of the spectrum. In the winter time, I bite skin off my lips, I lick my lips, I rub my hands against my lips, I rub my shirt sleeve against my lips, and I pick skin off my lips. I also pick on my skin on my ears more in the winter as well.

I’m not exactly sure why this particular combo of tics and compulsions gets so bad in the winter time, but its probably a combination of the fact that it’s cold outside and I’m more stressed in the winter time because I have more homework and tests. So in the winter, I usually have to implement two important strategies to try keep my lips from constantly chapping and bleeding and to try keep the skin on my ears healthy.

The first strategy is that I try to keep the Bert’s Bees chapstick with peppermint on my lips almost 24/7. Bert’s Bees chapstick with peppermint is actually the only chapstick that I am able to use, because all other chapsticks really bother my Sensory Processing Disorder and are just intolerable. The Bert’s Bees helps keep my lips moist, helps me keep my hands off my lips, and helps me keep from biting and licking my lips.

Sometimes though the tic/compulsion is too strong for the Bert’s Bees to keep me from doing my lip tics/compulsions so that’s where strategy No. 2 comes in. Strategy No. 2 is to keep at least two rubber bands on my wrist at all times. When the urge to pick, bite, lick, or rub my lips is too strong, and I notice myself starting to do these things, I pull the rubber band on my wrist back and snap it against my skin.

It doesn’t hurt too much, but over time it helps me associate the tic/compulsion with negative pain. Also the rubber bands on my wrist can help keep my hands busy if I fidget with the rubber bands. While this doesn’t completely stop the tics/compulsions associated with my lips and with picking my skin, it does help reduce them.

In the past, though, these strategies haven’t been completely effective and many times during the winter i’ve given up with them and just stopped using them because of frustration that they don’t help as much as I’d hoped.

So today is the first day this year that I’ve started to implement these strategies. Hopefully they will be more effective this year than they have been in the past. Wish me luck! And maybe if you have similar tics/compulsions to these that I just mentioned, you can try out these strategies and see if they help for you.