CPRI Brake Shop clinic: Self-Esteem

Thoughts to Ponder:

Leaky Brakes are Sneaky.
The Best ‘Symptom’ to Have.
You Are Not Your Disorder.
The Positive Side of Leaky Brakes.
Role Models.
Accepting What Is.
Emotional Reactions on the Road to Self-Acceptance.
Respect Your Instincts.
Everything's Not Always Your Fault.
Sifting for Gold.
Lagging Behind, or Ahead of the Curve?
You Have a Lot to be Proud of.
Secondary School.
School Challenges.
Parental Guilt.

Questions:

My child often chooses not to participate in social activities. I am worried he might be sad, although he generally appears happy. Is it common for children with TS and associated disorders to experience social-emotional distress such as sadness?
How do all of these challenges relate to the development of identity? How much of what we see is disorder, and how much is this youth simply discovering who (s)he is as a person?
Are there resources we can access so that our daughter can meet others like herself and know that she is not alone? Are there camps? Support groups? What about for ourselves too?

Leaky Brakes are Sneaky. Not only do ‘leaky brakes’ get good kids who are trying to do well into trouble…but then they often don’t even get the blame! They sit back and watch the show, as adult and child get angry at one another and then both start feeling badly about themselves. That hardly seems fair! An important idea to learn from the, “Brake Shop” is to stop fighting with each other for awhile and to instead start ganging up together on the leaky brakes causing all the difficulties! This doesn’t mean we don’t do anything about problems. It means we make the assumption that the child no more desires to have this problem than the adult desires to deal with it, and then go from there. And once those leaky brakes are in the spotlight and getting addressed, our experience and research shows that things improve greatly…showing that, for the vast majority of people in the ‘club’, it really was the leaky brake that was the bad guy all along!

Another way leaky brakes will fool us is that sometimes they will work, sometimes they won’t, and sometimes they’ll work only a little bit. In some ways life would be easier in the club if those brakes NEVER worked – at least then it would be more obvious that this child has a problem rather than being a child who is a problem. But if the brakes work differently day-by-day, this can trick those with good brakes into thinking that these children really can stop…when they ‘feel’ like it.

The Best ‘Symptom’ to Have. It is true that the prognosis of individuals with tics alone tends to be better than individuals diagnosed with additional ‘leaky brakes’ (e.g. OCD, ADHD). So is life better when you only have tics? Not necessarily. Other research has shown that, even among those with ‘just tics’, coping success varies enormously between individuals with the exact same symptom severity.

So what is it that predicts success then? Research by Dr. McKinlay indicates that one’s attitude towards disorder (i.e. adopting an empowered versus a more fatalistic viewpoint) impacts coping success far more than symptom severity does. In other words, doing well is more related to a person’s outlook than it is to what tics (s)he might have.

You Are Not Your Disorder. HAVING ‘leaky brakes’ and SUFFERING from ‘leaky brakes’ are two completely different things that do not have to overlap. Those with the right information, the right attitude, the willingness to educate others, and the support of knowledgeable people around them can be very happy and successful people – no matter HOW severe their symptoms are!

The Positive Side of Leaky Brakes. As with any quality of life, there are two ways to look at these disorders. They lead to some things we don’t like (e.g. tics, intrusive thoughts) and they lead to some things we do (e.g. quick reflexes, quality work, ‘quickness’, creativity, inventiveness). One way people stumble onto this recognition is by taking medication for their leaky brakes. Medications can be very effective in making those brakes work better, but unfortunately medications can’t make arbitrary cultural distinctions between the symptoms our society shuns and the ‘symptoms’ our society values very highly. Some of what we traditionally think of as medication ‘side-effects’ are merely the effects we didn’t want (i.e. the loss of symptoms that were a source of strength, giftedness or identity for us).

Role Models. A number of extremely successful people in history and our world today have had, ‘leaky brakes’. People like Tim Howard (soccer goalie), Jeremy Stenburg (Motocross Champion), Jim Eisenreich (World Series baseball player), Samuel Johnson and Mozart have all been identified as having or exhibiting symptoms of TS; in addition, others such as Jim Carrey (ADHD), Albert Einstein (‘ADD’), Howie Mandel (OCD), and Howard Hughes (OCD) succeeded perhaps BECAUSE of their ‘leaky brakes’ and not in spite of them.

Accepting What Is. While it is important to grow and to work towards improving one’s circumstances, it is equally important to accept things that likely won’t change. There is no cure or perfect “fix” for leaky brakes. Likely you’ll have some leaky brakes your entire life. Likely you’ll continue to have up & down periods dealing with your leaky brakes. Likely you’ll continue to meet some people who don’t understand about leaky brakes and who will misperceive you. Likely you’ll continue to meet some people who will mistreat you.

This isn’t fair to you. But it is likely. Accepting these things enables you to move on from continual despair to instead focus on the things you CAN control and change. It also frees you to discover the strategies and methods for best accomplishing your goals based on how you were actually built…not how you are trying to force yourself to be. Because the GOOD news is that, despite all of those things you likely can’t change…it is STILL possible to be very happy.

Emotional Reactions on the Road to Self-Acceptance. When club members begin to sense that they are in some ways different from others, or when they first learn of their diagnoses, they can have all sorts of different reactions. Some might need to pretend for awhile that they really DON’T have leaky brakes, and will deny anything is wrong. Others may feel embarrassed or ashamed of their symptoms, and may spend some time feeling very sad that this has happened to them. Still others may even get very angry and lash out – in fact sometimes club members bully others as a way of coping with the way people treat them differently. Still others may work really hard to make their leaky brakes go away – to find the perfect cure in the right treatment, to please God enough so that he’ll take the symptoms away, or to ‘feel normal’ by finding the right people or the right classroom to give them the ‘right’ things.

All of these reactions are very normal to have, and none of them are bad things to feel. Most club members feel all of these things for at least a little while – in fact a club member must experience these emotions before (s)he can get to a point of acceptance of themselves and their leaky brakes.

Respect Your Instincts. Deep down in every human being is a wisdom that exists beyond words. On a gut level, people can immediately sense whether something said or done to them feels ‘right’ or ‘wrong’. Many things tend to interfere with being in touch with that inner wisdom though (e.g. the words of others, our own thoughts). More often than not, then, people act again and again in ways which ignore or betray that voice from within.

Listen for, and implicitly trust, your own inner wisdom. You may not be capable of explaining why you feel the way you do in that moment – you may not even understand why you immediately knew what you knew until many years have passed – but have faith in the notion that you will always know what is right for you more than anyone else. No one is ever in a better or more powerful position to care for you than you are yourself.

Everything’s Not Always Your Fault. We are so used to focusing on how our leaky brakes have contributed to problems in our lives and with others… because, left unchecked, those leaky brakes can cause a great deal of trouble! While a commitment to responsible management of our own leaky brakes is an important and admirable thing to do, it is equally important to realize that you and your disorders are not always to blame for every negative experience you have. Other people have issues too! Always assuming the blame is on you makes it extremely difficult to ever feel good about yourself….and also makes it extremely easy for others to deflect their own contributions to a situation by allowing you to own it all for them.

Sifting for Gold. Club members may find they have fewer people interested in hanging around them than others have. This shouldn’t be taken to mean that those other people have more real friends though. Many people find that, when the going gets tough, they really only had one or two good friends all along. It’s easy for people to hang around for the good times, but true friends also stick around for the not-so-good times. The advantage that club members have, then, is that we know right away who these one or two good friends are. Since the ‘fair-weather’ folks often never bother to hang around us in the first place, our leaky brakes can serve as a very good frienddetector and can keep away those people that couldn’t ever really be counted on anyway!

Lagging Behind, or Ahead of the Curve? Everyone at some point will deal with challenges or hardship in life. Since leaky brakes are something we are born with, this means we have to start learning to manage challenges very early in life. As an adolescent, this may seem to be holding us back and putting us behind everyone else. In reality, though, we are simply developing skills and learning lessons that everyone someday will need. The difference is that we’ll be better prepared for those hurdles because we’ve, “been there, done that”. To say it differently, in many ways you’ll actually be ahead of everyone else because of the experiences you’ve had.

Think of the oyster and the pearl inside of it. At one time that pearl was just an irritating and unwanted grain of sand, scratching and scarring the inside of that oyster. Not much fun at the time, but it is through the oyster’s effort to cope with this irritant (by covering it with a white material) that eventually results in a beautiful and valuable pearl for everyone to admire.

You Have a Lot to be Proud of. Learning about your leaky brakes and learning how to manage them effectively takes time, effort, motivation and commitment. Just trying says at least as much about your character and skills as getting an “A” on your report card does, or getting a goal in hockey does.

Yet, so often when it comes to leaky brakes, we treat the victories achieved and the talents developed as if they are nothing worth mentioning. Even worse, we might feel ashamed to mention a major victory over our leaky brakes. That needs to change.

Send a broadcast email to brag about how good your child has gotten at bossing back her OCD. Boast at the extended family dinner about how your son is educating others about his TS. Knowing your efforts are being recognized, and knowing you are being cheered on, goes a long way to keeping club members trying hard even during the not-so-good times.

Secondary School. One benefit to entering high school is that teachers begin to focus more on outcomes rather than process. This increased freedom permits us to succeed on our own terms – to find routes to those end-points that, while perhaps different from the routes others took, nevertheless allow us to reach the same destination. In a sense, this is a negotiation between person and symptomatology – recognizing which goals one wishes to accomplish, recognizing and accepting the obstacles that one’s symptoms will present, and designing a path that takes both into account. Another benefit to secondary school is the increased flexibility in choosing courses that ‘fit’ well with your interests and strengths.

School Challenges. The following reflects the personal experiences of Dr. B. Duncan McKinlay, Psychologist (“Dr. Dunc”) within the academic system, as solicited by a family within the Brake Shop clinic. As such, readers are advised that this is an anecdotal account and not clinical information.

Dr. McKinlay grew up in a time where not much was known about these disorders; hence, he was without diagnosis or formal accommodation. What was valuable for him in that unique situation was that those around him focussed on outcomes rather than process. By allowing flexibility in the means to accomplish an inflexible end, this permitted him to succeed on his own terms – to find routes to those end-points that, while perhaps different from the routes others took, nevertheless allowed him to reach the same destination. In a sense, this is a negotiation between person and symptomatology – recognizing which goals one wishes to accomplish, recognizing and accepting the obstacles that one’s symptoms will present, and designing a path that takes both into account.

Dr. McKinlay did not even realize at the time that he had created so many useful ‘strategies’ for others with similar neurology – in fact, once he was surrounded by others within a university residence who worked in a vastly different fashion, he initially believed that what he was doing was ‘wrong’. Ironically, it was adjusting his practices to match those of everyone else that caused his grades to decline! Only once he learned to trust his own path – once he reverted to practices that worked with his brain rather than against the grain – did he find his potential and allow his abilities to shine.

Parental Guilt. Parents (and other adults) are victims of those leaky brakes too. Like you, they didn’t ask for any of this. Also like you, they were doing the best they could! Before understanding what the heck was going on, EVERYONE made lots of mistakes. It’s important to let bygones be bygones, or at least to take the emotion from all those bad times and direct it now towards the REAL enemy – the leaky brakes! Otherwise the leaky brakes will continue to win…

Parents and other adults need to know that any guilt they feel for things they did ‘wrong’ before learning about leaky brakes is misdirected and undeserved. You shouldn’t be judged on what you did out of not knowing. It is what you do now, armed with all of this new knowledge, which shows what kind of person you are. How will you change your approach?

Answers:

1. My child often chooses not to participate in social activities. I am worried he might be sad, although he generally appears happy. Is it common for children with TS and associated disorders to experience social-emotional distress such as sadness?

Feelings of frustration, discouragement, invalidation, demoralization, anxiety, and low self-esteem are very common in children with TS and associated disorders. Children go through the same stages of acceptance with respect to their diagnosis as they would for grief (i.e. denial, anger, bargaining, depression, and acceptance). For example, children may express resentment at the unfairness of their diagnoses.

It should also be emphasized that part of successful living with these disorders comes from the recognition that there is an undeniable additional load which comes with living with ‘leaky brakes’ that others do not carry. Whether this means not always participating, being somewhat more selective in what activities one engages in and when, or choosing to not participate as long, it is wise to respect that additional load. Put differently, while our society often assumes that healthy and happy people display their health and happiness through extroversion, it oftentimes can be the very act of refraining which helps promote health and happiness in a member of the, “Leaky Brake Club”.

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2. How do all of these challenges relate to the development of identity? How much of what we see is disorder, and how much is this youth simply discovering who (s)he is as a person?

It’s probably not one or the other. ‘Leaky brakes’ are best thought of as a “theft of privacy” in that the usual controls or ‘brakes’ that most people have over inner impulses, thoughts, emotions and desires are faulty in individuals diagnosed with this spectrum of disorders. Hence, many natural but ‘hidden’ responses, tendencies or urges common to most people are dysregulated and “amplified” in these individuals. This then puts all of these responses, tendencies, or urges on display for the whole world to see and judge.

Put simply, all behaviours involve an interplay between both the disorder AND the individual. It is not the urges or thoughts or impulses that occur to our clients that make them different from other people. It is the fact that they cannot help but wear it all on their sleeves which makes them different.

From that perspective, the principle impact these disorders would have on the development of a person’s identity would be to make a very normal process a much more ‘public’ and ‘amplified’ an affair than it would be for youth with better self-regulation. Another way to say this is that a child would probably have the same likes, dislikes, strengths and weaknesses whether (s)he has, ‘leaky brakes’ or not, and (s)he would likely have the same thoughts, impulses, and observations that everyone has when maturing and developing an identity, but the identity of someone with ‘leaky brakes’ might be a bit ‘bigger’, and the entire process a little more on display, than it might have been otherwise.

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3. Are there resources we can access so that our daughter can meet others like herself and know that she is not alone? Are there camps? Support groups? What about for ourselves too?

While the Brake Shop does not offer support groups, a number of options for exposing our clients and their families to others coping with ‘leaky brakes’ (either directly, or within a family member) are available. These include joining the Tourette Syndrome Foundation of Canada (TSFC) young person’s council, going on that organization’s messaging board, attending local support group meetings held by the TSFC or the Tourette Syndrome Association of Ontario (TSA), or attending the parent, teacher, child, and adolescent tracks of annual conferences held by either organization. Contact information for these and other self-help organizations are listed on our “Resources – Support Groups” handout found on our clinic website.

A number of summer camps in Ontario are designated as “special needs” camps and may be a life-changing experience for your child. Two camps with exclusive, specialized TS programs are Camp Winston and Camp Prospect.

Finally, attendance at our ‘Leaky Brakes 101’ course is another option for older youth, where our clients could potentially exchange contact information with other teens there. Our clients most often find the first and last sessions most helpful.

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Frequently Asked Questions home page.