Ken Shyminsky

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FCKING BTCH A**HOLE – TOURETTE SYNDROME

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Imagine being compelled to do or say the worst possible thing at the worst possible time. This could include shouting the “N word” in your class at school, farting on a date, or yelling “Bomb!” in an airport. It might also include repeatedly banging an injury over and over again or obsessively twisting/cracking your neck (causing pain) well past the point of crying.

This is Tourette syndrome – a neurological auto-inhibitory dysfunction of the brain. It’s a disorder that includes impulsive thoughts and movements that will derail any normally accepted interaction or behaviour you may intend for yourself.

Tourette syndrome itself makes me tic. Tics are repetitive body movements and my most common tics are flipping my fingers and wrists, a slight head jerk, and a ton of unnecessary sniffing. I also have a little bounce in my step. My tics are manageable now because I have years of experience redirecting them to less noticeable body movements, or repressing them, and my impulse control is well developed at my age. It wasn’t always this easy for me though. In high school, however, I ticced so much that I almost fell off my chair a few times. For my stepson, Nate, a 15-year-old boy, impulse control is yet to be mastered. He called his mother “Fucking Bitch Asshole” for about 5 years. Most times he felt bad, but not always. He licked everything you can imagine because his disorder drove him to do it. His manifestations of Tourette are quite spectacular. He would be running across the street, and be forced to lick the bottom of his shoe without losing a step. It was a tic. He has banged, bruised and twitched himself to the doctor’s office many times.

TV Tourette…. A phenomenon most people are well aware of is often the butt of jokes. It’s the “Fucking Bitch Asshole” awkward moment that TV shows follow-up with a laugh track. The uncontrollable swearing that is the hallmark of Tourette is called coprolalia. My stepson and I have that too. Only about 10% of people with Tourette Syndrome have coprolalia. In our house, it can be quite laughable. Our kitchen table at dinnertime can be a barrage of Tourettic coprolalia bouncing from one end to the other in quite a laughable manner. Its not like we could possibly send everyone to the corner for swearing – we would all starve. We have to laugh. But coprolalia is tough too. I’m a professional and I can’t just let things slip out on the school playground or in my office. I have to be on top of it. For Nate, it’s more complicated. Imagine telling your kid’s grade 3 teacher he will most definitely say “Lick my balls”, over and over and call her “bitch”. Yah, it sounds kind of funny, but it’s not when you really think of the implications for daily life. My son’s Tourette-related swearing presents a difficult barrier to fostering relationships at school and elsewhere. It’s a real-life challenge.

Another fact about Tourette Syndrome that you don’t learn from mainstream media is that the disorder almost always occurs with a handful of other disorders (called comorbid disorders). Obsessive-Compulsive Disorder (OCD) and ADHD are the most common, followed by Oppositional Defiance Disorder (ODD) and Learning Disorders – and we have them all. Everyone these days know about ADHD…. It’s the “I can’t stop moving”, “I can’t focus” disorder that can result in abysmally poor impulse control. When this disorder is combined with deficits in inhibition caused by Tourettes, self-control becomes nearly impossible.

OCD is probably the darkest of the comorbidities of Tourette syndrome and one of the most common with Tourette Syndrome. Popular culture often represents OCD as a person who is very neat, perhaps “too neat” and likes things “perfect”. Although these may be traits of the disorder, it’s only the tip of the iceberg. OCD can also include obsessive thoughts that are gruesome or evoke crippling anxiety. These thoughts are constant, sometimes lasting for years. Sometimes they prevent the sufferer from moving forward in their daily lives. They can be truly dark, and even evil. An undiagnosed OCD sufferer is driven to think that they must be an evil person for having such evil thoughts, when the opposite is true. Such thoughts are distressing simply because you know they are wrong and you do not enjoy them. For example, at the age of 4 my stepson Nate saw a fish being gutted and prepared for cooking. Later that day he was inconsolable. Only after lengthy investigation was his mother able to discover that Nate could not stop picturing himself using a knife to “gut” his mother in the same way he saw the fish being cleaned earlier that day. That particular thought/vision remained with Nate for about 4 years and was his living hell. On the advice of his psychiatrist, Nate and his mom learned to treat it for what it was – an intrusive thought and not something he was going to act on. The fact that it was distressing was an indication that he knew it was wrong, and it was not something he would act out in real-life.

There are medications for each of these disorders when they occur alone. Physical tics, OCD and ADHD can all be treated (to a degree) with medication but once again, Tourette presents a new problem. Some medications for ADHD and OCD can cause or increase physical tics. Other medications for ADHD can not only worsen OCD symptoms but they can cause or worsen episodes of rage (another common disorder among people with Tourette).

Being able to find humour in Tourette Syndrome requires a special perspective. It certainly isn’t funny to the person who is struggling to find peace. The constant obstacles that these mental and physical assaults present often force sufferers (of all ages) to a dark place, where there is only exhaustion and no hope. Escaping this place takes years of medical and emotional support. It doesn’t just go away.

I’m not your typical “Touretter”. I’ve taken coping with these disorders to a new level. Not only have I successfully navigated the symptoms of my disorder(s) and the “darkness” they can bring, I have developed strategies that I share to help other sufferers. I have even learned to see the gifts that these disorders can bring. Along with my wife and children, as a collective, we have Tourette Syndrome, ADHD, OCD, Oppositional Defiance (ODD), Learning Disorders and autism spectrum disorder. It’s a pretty interesting family. We may not be like most families, but that doesn’t keep us from being anything but normal. We’ve discovered that normal is in the eye of the beholder. Building on this, my wife and I have created a website to help others find solutions and draw upon the gifts that neurological disorders bring. Our website is neurologicallygifted.com and it’s full of info and advice for individuals, families and educators.

Having learned to successfully manage my Tourette symptoms, I’ve learned to embrace them rather than fight them. I’m able to laugh at them and the “situations” they can create. It has shaped me into a unique and resilient character who is stronger for surviving the continued, daily physical and mental assault of my disorders.

Why Is My Child Mean?!?

Ken Shyminsky ADHD, OCD, ODD, Tourette, Tourette Syndrome, TS

There have been many parent posts online regarding the general and persistent negative behaviour patterns of their children. “Why is my child mean?” They describe their children as being “mean” on a regular basis. It’s not uncommon to see this default behaviour in children who have neurological challenges. In my presentations, I call this the “Awfulizer Syndrome“. To these children, everything is awful. They always seem annoyed or angry. They are routinely mean or insulting. They often engage in name calling and typically communicate in an unkind or angry tone of voice. Generally negative in most aspects of their daily life, they are most often disagreeable. Without intervention and support, it is difficult to correct these behaviours. From personal experience, as a person who has overcome this challenge and a parent who has dealt with it, I can tell you it takes a great deal of effort to overcome this neurological affect.

Step One: Identify your child’s behaviours and the responses of your family members

Identify and address when your child is mean through his/her words, voice or actions. Be sure to do this when your child is in a calm and receptive state of mind. Session need to be frequent and on-going. Share your feelings with your child. Explain how their words/tone/behaviours make you feel, and how it affects your thinking about them (e.g. “Although I love you, your tone of voice makes me feel mad and I don’t want to be around you when you are mean to me”). This response is a natural consequence – people don’t want to be around people who are mean or unkind.

You need to make your child recognize and understand their behaviours before you can begin to change them. At times, it may be necessary to actually reflect behaviours back to your child by demonstrating them in a kind way. There was a time in my stepsons “awareness training” where I actually showed him what he looked like by putting him in front of a mirror to show him how threatening he looked. I showed him his angry face and clenched fists, and clearly stated that he was not allowed to be near us when he presented in this threatening way. Prior to this moment, he had no idea how he looked or sounded. It was not an easy process to embark. He was enraged by us showing him what he looked like. In the end, it was worth it. We convinced him that showing him explicitly how he appeared was something we were doing for him and not to him. It was not punishment but a step necessary for self-insight. I am not sure he could have learned as much about himself and how he appears to others without this step.

Step Two: Show and Teach

Do not assume your child knows how to be kind, even though you are kind in all you do to model appropriately for your child. Many children with these disorders do not learn by watching. They miss most body language and social cues (facial expressions and tone of voice). As a result, they must be explicitly taught. You will need to teach them appropriate words and actions, and explain when and how to use them (e.g. “When you upset someone, you must say “I’m sorry I hurt your feelings. I didn’t mean to”).

As a parent of neurologically challenged children, I admit it’s not always easy to for me to maintain my composure. In times such as this, it is also important to apologize to your child. As the grown-up it is our responsibility to model how to demonstrate how to keep calm and be in control. In addition to repairing any possible damage to your relationship with your child, you will be also teaching your child how to apologize.

Step Three: In the moment

When my stepson engages in mean behaviour, we politely remind him with positive language, “You need to use a friendly and caring tone of voice”, “Please use kind words” , “You need to try again, with a friendly (or caring) face”.

(See Neurologically Gifted’s article: Using Positive Language for Success)

If he continues with unkind behaviour we then issue a choice for him to self-correct, “You need to use a friendly voice”, or “You need to go somewhere else (give a choice) because we don’t like your behaviour right now and don’t want to be around you”. (such feelings are normal, and are the result of the child’s behaviour. This is a true-life natural consequence that your child needs to be aware of for understanding social norms. If he can’t make a positive choice independently then we would help by making the decision for him

(see Neurologically Gifted’s article Taking On Rage 4: Prepare a Plan)

While teaching my stepson, there were good days and bad days. I was not disheartened when he seemed to “slip back” a few steps. We focused on his progress, when he applied his new learning, and we built on those moments. Always quick to give him praise for making a good choice, we built his confidence and his emotional investment in the members of our family. Once distant and unconnected to his family, he now knows he is loved, and he not only cares about us, he is quick to admit when he has made a mistake, and asks for help when he needs it.

We all do, in our family.

Coprolalia Part 1: The Nature of Coprolallia

Ken Shyminsky Tourette Syndrome, Uncategorized

The Nature of Coprolallia

The term coprolalia is used to describe involuntary vocalizations that are obscene or socially inappropriate. Coprolalia includes swearing, but also includes saying things that are culturally taboo, socially unacceptable or inappropriate due to age or context.

For example, a child using any kind of obscene language, or anyone saying negative comments about another’s ethnicity or physical appearance or anyone screaming “bomb” or “fire” in a public place are all considered coprolalia. Coprolalia may also refer to these phrases or words being said inside the persons head or kept quietly to themselves, which may also cause intense internal distress. Copropraxia refers to gestures and actions of the same nature as coprolalia. Coprolalia can be a symptom of some neurological disorders as well as certain brain injuries and is a rare symptom in Tourette syndrome. As infrequent as it occurs, it is most often misunderstood, and often glamourized by media as a definition of Tourette Syndrome.

Coprolalia 1 Neurologically Gifted Coprolalia can occur in Obsessive Compulsive Disorder as well as Tourette Syndrome. People who have Obsessive Compulsive Disorder as well as Tourette Syndrome have a greater struggle as the two disorders may interact with each other and may perpetuate coprolalia. The obsession with performing, (or not performing), the inappropriate behaviour provokes the urge to follow through with it, and vice versa. (see Post: Where Tics and Compulsions Meet: TS Plus OCD for how these two disorders may interact)

Coprolalia is a particularly distressing symptom for people with Tourette Syndrome. The nature of coprolalia, being socially inappropriate, makes everyone involved uncomfortable, that is, until everyone understands what coprolalia is and why it occurs. Education about coprolalia being an involuntary symptom of a neurochemical disorder is essential to bring about acceptance and understanding. Coprolalia can be a lifelong struggle and the individual deserves understanding and acceptance. Coprolalia must be accepted by the family first, to provide the individual with a support system.

Coprolalia 2 Neurologically Gifted People with coprolalia may feel embarrassed and ashamed of their symptoms. There is no will or want to the expression of coprolalia. Often, the response to coprolalia and the lack of understanding and acceptance from other people amplifies the individual’s shame and embarrassment, leading to isolation. Fear of performing the tic in public and being constantly scrutinized and judged may also lead to isolation and depression. In addition, it drives the individual to constantly think about their coprolalia symptoms -What will I tic? -How will I handle it? -How can I suppress it -Who will laugh or stare? -Who will run away? In turn, the stress and hyper focusing will make the coprolalia occur more frequently and intensely. In this way, benign symptoms of coprolalia become malignant due to the stigmatization and judgment of the onlookers.

3 Common Difficulties in Understanding Coprolalia

Coprolalia is usually expressed in complex and variable ways, further leading to the misunderstanding of the involuntary nature of the behaviour. It rarely presents itself as a cut and dry symptom which always challenges everyone’s understanding and acceptance. The three examples below demonstrate how, by the complex nature of the symptom, parents, teachers, the individuals themselves, and onlookers can be constantly challenged to consistently accept coprolalia as a unwanted and uncontrollable symptom of Tourette Syndrome.

A Misunderstanding of Provocation

Coprolalia, like other tics, is prompted by a premonitory urge. For example, racial slurs may be prompted by seeing a person of a particular race; sexual comments may be prompted by seeing a member of the opposite sex. Seeing these people reminds the brain of forbidden/unacceptable words. Coprolalia co-exists alongside the faulty auto-inhibitory functions within the brain. When faced, for example, with a person of the opposite sex, the person may quickly think “I’d better not say “_______”. By thinking this thought, the individual has put the offensive phrase into their own mind. He/she will then be stuck with the phrase in their head. Coupled with poor impulsivity control, it can appear as if the person is willingly thinking the thought and then saying it without concern for the other person’s feelings. In truth, coprolalia has no relationship or meaning to the observed person and is not a personal attack. There just happened to be something within the environment that prompted that particular urge. For the person with coprolalia, they struggle to prevent themselves from saying or doing the worst possible thing in the particular situation. Imagine having to sit in a church or other place of worship. The mere sight of religious icons evokes meaning in our brains. This meaning cues the brain and conjures words (good and bad). A sufferer of coprolalia will focus on restraining himself or herself from shouting offensive words. This focus will bring these words to the tip of his/her tongue, and eventually out of the mouth. The struggle is internal and far more painful for the individual than those who may overhear the utterance. Coprolalia is not directed at other people nor intended to cause harm or fear in others. Oddly enough, the more a sufferer wants to STOP saying an offensive word, the more likely they are to say it – because of their focus.

Incorporation into Speech

Another confusing aspect about the expression of coprolalia involves the incorporation of coprolalia into regular speech and actions. This phenomenon is more common in children. The urge to say the word may be strong enough that it will occur within the context of speech. The tic is somewhat satisfied for the child, however; it very much appears as being a voluntary addition. Consider the F_ word as a vocal tic that is coprolalia. The child may voluntarily slip it into speech in a fluent way, satisfying the tic but being unaware of how voluntary the tic appears to be to others. For example, “That f_ing dog just f_ing barked at me”. This is very difficult for others (especially parents and teachers) to understand. I remember telling my child, when coprolalia began for him, to just pick one or two of the words and say them out of a sentence so people would more easily identify it as coprolalia! This strategy didn’t work because he doesn’t have the option to choose which tics he says, and because he never really understood why it would make a difference how or when it was expressed. To him, slipping it into speech was more “normal” than randomly shouting a bad word. And doing it my way didn’t satisfy his urge, of course.

Intensity and Frequency Changes

Another difficult characteristic of coprolalia that further impedes understanding is that stress increases tic frequency and intensity. Parents of children with Tourette Syndrome are very familiar with this phenomena. Both negative and positive stress occupy significant mental attention. In these situations, a child has less mental energy to suppress his/her tic symptoms. As a result, more tics are expressed, to conserve mental energy for all the other things that are consuming the child’s mental resources. Consider that anger, disappointment and frustration are major stresses. When a child attends to these negative emotions, they do not expend energy on suppressing their tics or coprolalia. In a situation that provokes strong feelings of anger in the child, tics and coprolalia escalate. In this type of situation, you will have a child who is angry, using inappropriate language, and louder because you have asked them to do something like “Come do your homework now, please.” What looks like a child reacting disrespectfully and aggressively may simply be a child reacting to a strong emotion, increasing tic expression due to the displacement of mental focus to the emotion. This situation is extremely difficult to manage and creates intense stress on families living with neurological disorders.

Education about the disorders, symptoms, and their expressions lay the groundwork to understanding, managing and accepting coprolalia.

Video for Coprolalia Part 1: The Nature of Coprolalia

Emotional Dysregulation – Just like Regular Kids but “Only More So!

Ken Shyminsky ADHD, OCD, ODD, Tourette, Tourette Syndrome, TS

Emotional Dysregulation – Just like Regular Kids but “Only More So!

A very dear friend and expert special educator insists that kids who have neurological disorder are just like regular kids – “only more-so!”

Let me explain what that confusing statement means…

Kids who have neurological disorders have feelings just like everyone else, except their feelings are so much more intense. They feel so much more of everything. They experience more joy when happy, (hence their hyperactivity), they feel more pain when injured (we think they’re over-reacting), more anger when frustrated or disappointed (leading to rage) and more sadness (also misinterpreted as over-reacting).

This evening, my stepson erupted into a fit of screaming and pounding the floor in a rage over homework, then back to a total recovery and calm. Soon after, he collapsed into a heap of tears as he suddenly recalled the death of his grandmother from the previous year. The intense grief lasted about 2 minutes, and he recovered once again, to join his friends in playing basketball.

I shouldn’t be surprised by his behaviour tonight. He was bound to fall from perfection at some point. He’s been stable and even tempered for months – and it’s due to consistency at home and at school.

Kids with neurological disorders are incredibly susceptible to change, as we all are – “only more so!”

Change has an effect on us all, to varying degrees. Some people abhor surprises, which is just another name for change. Kids with neurological disorders often fall apart in these circumstances that arise from change.

Emotional dysregulation can be observed as intense or extreme emotional responses to a situation, aggression, impulsivity, avoiding behaviours, difficulty calming themselves and difficulty knowing what emotion they are actually feeling and especially, drastic changes in mood.

My stepson’s chemistry and subsequent emotional state is totally dysregulated today for any number of reasons. From my own personal Tourette experience, I know he could be unconsciously reacting to the onset of the Canadian winter – with a reduction of daylight hours and cold temperatures. This always messed me up. It still does, sometimes. When his chemistry is thrown into flux like this, Nathan’s behaviour is erratic and (almost) manic. He can swing from one extreme mood to another. As well, he is dealing with another ill family member. Although he seems calm, he is very prone to experiencing a quick thought of concern, then bursting into tears from a memory of his late grandmother.

By keeping Nathan’s life consistent, we greatly reduce the occurrence of mood swings and emotional dysregulation. At times of change, it is important to stay connected to any consistency and predictability you can find. For example, on a trip during the holidays, we can expect Nathan to be extremely dysregulated and prone to mood swings.

His normal routine of waking, going to school, coming home and going to bed ceases.

In these cases, we keep eating and bed times consistent. We maintain sleep hygiene so he can slowly unwind and fall asleep at a reasonable time using his normal bedtime routine.

We give him ample warning of the plan of each day with frequent recaps and updates to give him time to process the upcoming schedule and reduce over reaction when the changes happen. Rules must be kept consistent, as well. There are no exceptions such as, “just this one time”, or “it’s the holiday”. There is no “flying by the seat of our pants” with our Nathan.

Keeping Calm

Meltdowns from emotional dysregulation can be minimized by maintaining routines, maximizing predictability, planning ahead, advanced warning of change and consistent rules.

For the times when dysregulation occurs, (and it will), it is helpful to keep in mind that kids with neurological differences actually do feel more, and they will respond more. They are just like regular kids – “Only More So!”

WHERE TICS AND COMPULSIONS MEET: TS PLUS OCD

Ken Shyminsky OCD, ODD, Tourette, Tourette Syndrome, TS

WHERE TICS AND COMPULSIONS MEET: TS PLUS OCD

Tourette Syndrome and Obsessive Compulsive Disorder often occur together. In fact, the Centers of Disease Control and Prevention states that more than one third of persons with Tourette Syndrome also have Obsessive Compulsive Disorder. Often tics and compulsions can look similar and be difficult to distinguish. Actually, to an observer it may be impossible to determine whether a behaviour is a compulsion or a tic without asking the person performing the behaviour, and even then it may remain a mystery.

The key to distinguishing a tic from a compulsion is the motivation behind the act. As an example, lets break down a simple motor tic which could very well be a simple compulsive behaviour .

The behaviour is blowing on the back of the right hand.

If the behaviour is a tic the person may feel a premonitory urge to perform the tic. The premonitory urge could be a tickle on the hand, a sensation in the elbow joint prompting the movement, a sensation in the lips to purse, a feeling in the chest prompting a need to exhale a breath. Premonitory sensations may be any feeling or urge that prompts the tic, creating the itch that needs to be scratched. The person scratches that itch and the tic is performed.

If the behaviour is a compulsion, the person is prompted by a different mechanism to perform the exact same behaviour. The person may have an obsession that there may be dust on the back of the hand, a thought that they may need to blow on the back of the hand to prevent something bad from happening, a feeling of anxiety or emotional unease unless they blow on the back of their right hand. The person then performs the action, (not a tic), and temporarily relieves the uneasiness or anxiety.

As you see from this scenario, the behaviour from the outside observer is identical. To the person, the behaviour may be triggered from and performed for very different reasons. It could also be that the person themselves may be unaware of the difference as well. Distinguishing the “why” the behaviour occurs requires some cognitive awareness, maturity and insight. A child, for example, may not be able to determine the “why” and just know that they have to do the act. A person with many tics and compulsions may have a low reserve of mental energy to distinguish the “why” of the behaviour. A person who has little understanding or insight about their differences may also be unable to articulate whether they are compelled due to anxiety to perform the act or if the act is a sudden, intermittent, unpredictable, repetitive, non-rhythmic movement that is classified as a tic.

Now let’s throw more uncertainty into the simple blowing on the back of the right hand. Perhaps this tic or compulsion is linked with another behaviour.

For example, the person has established that the blowing on the back of the right hand is a tic but immediately after performing the tic they are compelled to do it over until it feels just right. Now the behaviour may be motivated by anxiety and the following act is a compulsion. So the person blows on the back of the hand twice, once performing a tic, the second time due to a compulsion but both times in the exact same way. Alternatively, it may be the opposite, where the initial act is a compulsion which then triggers the tic.

To make it more confusing, it may not be the exact same behaviour, it may be any other tic or compulsion. For example, the person may be compelled to jiggle the door handle to make sure it is locked and then perform a tic by knocking on the door. The combinations may be endless and the compulsions and tics may interact in very intricate ways.

So why may it important to distinguish a tic from a compulsion?

Sometimes it may not be. If the tic or compulsion is not intrusive, disruptive or bothersome to the person performing it, then knowing the motivation for the behaviour may not be important to them. If the person is bothered by the act, motivation is important in terms of modifying or extinguishing the behaviour.

Obsessive compulsive disorder may be treated using Exposure and Response Prevention, (ERP) and Cognitive Behavioural Therapy, (CBT).

Tics may be treated or modified using Cognitive Behavioural Intervention for Tics, (CBIT).

Both of these therapies require gaining insight about the motivation that drives the behaviour and thus determining whether it is a tic or a compulsion. The insight lays the groundwork for the appropriate behavioural intervention. But, not only is knowledge and understanding important for therapy, it helps us to better understand who we are, how our brains work and why we do what we do which will contribute to our overall self-awareness and emotional well-being.

Here is a short example of tics and compulsions interacting….

For information how Tics and Compulsions manifest in Coprolalia see: Coprolalia Part 1: The Nature of Coprolalia

The Birthday Cake: Lessons from Oppositional Defiant Disorder, ODD

Ken Shyminsky ODD, Uncategorized

Nathan doesn’t eat birthday cake.

He can’t. His brain won’t let him. There is a great big stop sign between him and his birthday cake, parked right between the blowing out the candles and the sweetness of the first bite. The stop sign says “NO!” Then a caption underneath says, “This message is brought to you by YOUR ODD.”

Its not hard to pick out a child with Oppositional Defiant Disorder, ODD. Just ask “ Do you want to go to the park, honey?” or “Do you want some ice-cream?”

“NO!”

“You sure?”

“NOOO!”

“I have your favourite flavour.”

“NOOOO! I HATE YOU!”

If you think that is bad -try to convince him that he really, really does want ice-cream. You may start a full blown rage and certainly ruin your day and his day. What would be even worse? You end up feeling a need to punish him, send him to his room, ground him from his friends and take away his I-pod. Yikes! Things go from bad to worse. Everyone ends up exhausted and steam-rolled.

And its not like Nathan doesn’t like cake.

(Okay. He doesn’t like Chocolate cake and that’s a bit weird.) He likes cake. He could eat an entire cake all by himself – just not his Birthday cake.

Year after year, Nathan refused his birthday cake. Chocolate cake, (I know), angel food cake, ice cream cake, any kind of cake… It didn’t matter. He loved his birthday and fully participated and listened graciously to our singing “Happy Birthday”, making his wish, posing for photos and blowing out the candles. And then, “NO!” to cake.

Sometimes, I would feel ripped off. Why the heck can’t we just have a happy, normal celebration? “Let’s eat cake!” “I got it just for you!” “Just enjoy the damn thing.” There was something unsatisfying about not ending up with icing and smiles on all our faces. I admit it – I am pretty sensitive. Being yelled at by my son hurts my feelings. Especially if I am really trying to be nice!

Sometimes I felt bad for him. His challenges are pretty huge and it’s NOT just the cake. But…his disorder preventing him from being able to participate fully in a normal, happy celebration year after year with his family. The poor kid! He likes cake and he can’t even eat his own cake! Knowing the expectation that “everyone loves birthday cake”, causes his ODD to contradict the expectation. He can’t help it. He needs to say “No” to it. That’s how ODD works: if he is expected to do something, say something, or even like something (like birthday cake), his internal stop sign pops up and forces him to become non-compliant.

And yes, sometimes it would go from bad to worse. Someone would naively try to convince him, “Oh, come on Nathan, you have to havesome of your birthday cake.” Then his ODD would take over. Harsh words would go flying, voices would be raised, and feelings would be hurt. He is already fired up, of course – it’s a party after all. Not a good way to end a birthday party.

What we have learned from Oppositional Defiant Disorder

Oppositional Defiant Disorder responses are deeply entrenched by repetition. To circumvent this roadblock, try going around or get off and take another route! This is one of the general rules in our home. We know that attempting to crash right through Nathan’s “NO”/Stop sign will cause injuries. And, who wants to flatten their child?

Ignore the “No!” The automatic “NO!” is exactly that – automatic. It really doesn’t mean anything. If we wait it out, the automatic “NO!” may subside, then disappear.

Give your child time between their automatic “NO! and your reaction to it. Nathan often responds with “NO!” and then physically follows through with a “Sure, Okay!” The pause before my reaction was the key to that realization. Over time, the delay between his automatic “No” and “Sure, Okay” became shorter. Now he often says “No” while he complies with our requests. It can be funny at times.
Pick your battles. Listen to your child and respect their choices. Sometimes, “NO!” is really a “NO!” (like the chocolate cake), and not just ODD, (like the “NO!” birthday cake stop sign). Don’t make a “NO!” into a “You’ll do it because I said so!”
Teach your child about their Oppositional Defiant Disorder and what your observations are. Self insight will help your child immensely to take power over their automatic ODD responses. We talk about it all the time and encourage Nathan to fight back against his ODD tendencies.
We don’t really know when Nathan’s birthday cake stop sign got placed or cemented there but we all know it is there, so we work around it. This year Nate had a slice of pie. I made cupcakes and we had two kinds of pie. He picked lemon meringue. Candles and everything!

Coprolalia Part 2: Coping With Coprolalia

Ken Shyminsky ADHD, OCD, ODD, Tourette, Tourette Syndrome, TS

Coprolalia Part 2: Coping With Coprolalia

Coprolalia can be a particularly distressing symptom and a lifelong struggle for an individual with Tourette Syndrome. Stigmatization, shame and isolation must be reduced by the efforts of the individual, their families, their community and society.

Strategies to manage coprolalia will target improving the acceptance and understanding of this difficult symptom which will in turn reduce the frequency and intensity of it’s expression.

Understanding the nature of coprolalia is essential to understanding strategies for the management of coprolalia.

Be aware that coprolalia, a symptom of a neurological disorder, will not go away. If the symptom is not being expressed, the individual is either effectively managing or suppressing it’s expression. Suppression is NOT a desired response. Suppression requires the individual to constantly focus on the symptom reinforcing coprolalia and exhausting the person’s mental capacity to do anything other than suppress. Obsession with suppression may lead to a constant internal struggle. Effective management will serve to increase everyone’s understanding about coprolalia, reduce stress and prevent hyper focussing on the symptoms. In a sense, just by changing how we think about and react to coprolalia we can reduce it’s incidence and negative impact

Promote Understanding

In order for the individual with coprolalia to be accepted, education about coprolalia must happen. Education is essential to the individual and their families as well as all others who will, or should, become the support network essential for healthy living. This will include the individual’s school, their peers, their medical professionals, clubs they are involved with, their community and society in general.

There are numerous internet sources aimed at the promotion of awareness and understanding of Tourette Syndrome all of which can be useful sources for information and support. Coprolalia is a rare symptom of Tourette Syndrome and there are few comprehensive sources for information specific to this symptom. Many sources about Tourette Syndrome define coprolalia generally but few offer more than a definition. We recommend Neurologically Gifted’s article, Coprolalia Part 1: The Nature of Coprolalia, which is a comprehensive look at what coprolalia is and how it may manifest. This article provides a deeper understanding of coprolalia, how it may be expressed and how it feels for the individual. We also recommend using other sources of information about Tourette Syndrome, particularly explanations about tics and the nature of tics, to further understand coprolalia. Coprolalia, however complex, is a vocal tic. If one understands how tics work they can understand how coprolalia works. Use your knowledge of tics and coprolalia to share information with the key people in your own or your child’s lives.

If your child has Tourette Syndrome educate them also and use them as source for information. They are experts about how their brain works but will need adult coaching to gain insight into their symptoms. Teach them the language needed to explain their symptoms to others. Include them when you are speaking to others about their disorder. Advocate for your child, with your child present whenever possible, and teach them how to advocate for themselves. The gift of self advocacy will provide them with security and strength and serve them throughout their lives. Practice at home having your child educate others about Tourette Syndrome and coprolalia to improve confidence and self acceptance.

Always consider that not everyone you or your child meets will understand or care to understand about your own or your child’s symptoms. Be aware and let your child know about this possibility. I often tell my child that others may never understand him or care that he can not control his symptoms. They may “just never get it”. I let him know that we have done our part by sharing information with them and that it is their choice to make an effort to understand or not. I let him know that we can feel good and satisfied by our efforts knowing we have done what we can do and move forward in a positive way.

Reduce Stress From Coprolalia

Tension can often get out of control in a home where coprolalia occurs. There are not many people whose anxiety doesn’t rise exponentially when faced with loud, sometimes aggressive shouting of obscenities or unkind words. Education, as above, will allow members of the family and those around the individual to understand coprolalia as a symptom of a neurological disorder and not a threat. With this understanding there becomes a different perspective on the behaviour and acceptance and understanding of the individual will follow. Reducing stress in the home will reduce stress to all members of the family. Family members will no longer react with anger or fear. The individual will no longer hyper focus on suppressing their symptoms, thus breaking a powerful positive reinforcement cycle.

Ignore symptoms of coprolalia

The individual with coprolalia already knows that their behaviour is unacceptable and not the social norm. In fact, the more unacceptable the behaviour the more driven the individual is to perform it. Everyone in the family should know that the individual cannot help doing the behaviour and that it is a symptom of a neurological disorder. Planned ignoring helps to relieve stress on the individual and within the family. The individual deserves a break and a comfortable place to relax and let their guard down. It is very likely that the individual is exhausted from expending mental energy to suppress some or all of their symptoms while in public. In school or in the workplace they are driven to be accepted and to fit in as best they can. Give them a break at home for working so hard outside the home.

Here is an example of Planned Ignoring of Coprolalia Caution: Clip contains Coprolalia

Planned ignoring provides an environment where the behaviour is acceptable, reducing the urge to perform it which is driven by the auto inhibitory mechanism that tells them “Do it!” By allowing coprolalia, the tic is not reinforced and the person does not hyper-focus on the behaviour. For the family, stress is also reduced. Parents are no longer torn between accepting and punishing the behaviour. Siblings are no longer fearful that their sibling is in trouble, and that mom and dad are going to be angry again.

This is not to say you must ignore all swearing or aggression in your home. Every action, wanted or unwanted, uncontrollable or within control will have a consequence. Your child should be held accountable for all behaviours. (see: Be Accountable and Responsible below)

It remains unacceptable for another child without Tourette Syndrome to swear or copy the behaviour. Tourette Syndrome is not contagious and neither is coprolalia. If a child without Tourette parrots and then tries to justify with “But Johnny says it”, your response should be a negative consequence if it is within that child’s abilities to follow appropriate behaviour. It also isn’t to say your child with Tourette Syndrome can just carry on swearing at will if the swearing voluntary it is not a symptom of their disorder.

If an individual has coprolalia it is their reality and will be a lifelong struggle. How well they manage the symptom and how well they succeed will be determined on how empowered they feel about themselves. Unconditional love and acceptance is paramount in nurturing a healthy human being. In the home, ignore benign displays of coprolalia and nurture self-esteem while dealing with this problematic behaviour. Less stress and less focus on the coprolalia will serve to give them more energy to apply other strategies to manage coprolalia. Planned ignoring is not easy but keep in mind the benefits and energy you can use towards other useful strategies.

Now visit Coprolalia Part 3: Taking Action on Coprolalia to see what you can do, besides sharing awareness, to lessen the impact of coprolalia.

Rage!!! – Rage 1: About Rage

Ken Shyminsky Tourette, Tourette Syndrome, TS

As an adult who has Tourette Syndrome and associated disorders, I have an intimate understanding of rage through experience. I understand the frustration of shouldering the burden of getting through every day filled with tremendous and constant challenges due to my disorders and associated symptoms. These demands not only test one’s patience continually, they test one’s ability to be still, to perform routine tasks and even to relax. If unable to calm themselves during times of stress, the sufferer may “boil over” emotionally, and release their frustration through angry outbursts.

(See our post Mental Health Challenges in Neurological Disorders for more about stress – coming soon)

People with neurochemical disorders including Tourette Syndrome and ADHD, often have a low frustration tolerance. They are usually predisposed to poor self-control in the manner of impulsivity and rage. This is especially true in children with neurological disorders. Children are just learning the coping mechanisms and strategies to assist them with daily struggles due to their disorders as well as managing the common unpredictable stress life brings. Dealing with the day to day of managing their symptoms, (which are always waxing and waning), drains away their mental energy to cope with anything else. They can easily become overburdened with stress. Add to this, an under equipped skill set to calm themselves, and outbursts of rage can occur at even the smallest challenges.

At times, the release of this frustration goes beyond the person’s control and the combined behaviours that occur are termed rage. Specific biochemical and hormonal changes occur within the body and brain including the “flight or fight” response. Rational thought, perception and reasoning stop functioning. Learned strategies for calming are no longer useful. The person will often say or do things they would not have ever thought of doing. Often, the person may have no memory or have an altered memory of events that occur during a rage. Shame and depression may also follow rages as the person wonders how they could have acted so poorly and so out of control. It is important for the individual to recognize that the actions that occur during a rage are beyond their control. Feelings of shame post rage will accumulate without this understanding and make the individual more prone to rage. It is also important to understand that despite the involuntary nature of rages, there is help, there are strategies and people manage them effectively. But how?

Referring to my own experiences with rage and TS+, I have always believed that an adult is ultimately able to control their rage. Developing the ability to do so requires maturity and the ability to take personal inventory (asking yourself, “How am I doing right now? How are people reacting to what I am saying?”). Children can eventually learn to take control, but it requires a great deal of training and understanding. I believed that with coping mechanisms for stress, strategies for relaxation, self awareness and education, rage could be controlled.

Unfortunately it is not quite that simple.

My belief that rage could be controlled was seriously challenged a number of years ago when I was asked to counsel an 11 year old boy who was having up to 20 rages a day at school and home. The child was unable to control himself in any manner. At home, he lived with mom and grandmother. The two women supported each other as they were both of poor health, and endured the constant challenge of rage and violence in their home. The child was quickly growing and was bigger and heavier than they were. His behaviour was unmanageable in both the school and home setting.

Fortunately, I already had a trusting relationship established with this child. When I met with him to counsel him, we reviewed the problem behaviours at home. As his aggression and violent outbursts were becoming increasingly more dangerous, I warned the child that if he continued to be unsafe, he would be taken from his home and would not be able to live with his family. The next two weeks saw a positive change. After that however, he started to re-engage in violent behaviours towards his mother and grandmother. These behaviours continued to become more severe until finally, he attempted to push his grandmother down the stairs. He was immediately removed from his home and spent the next nine months in a residential facility. When he was released and returned home, he was able to control his rage.

So, this eventual success story reinforced my understanding of rage, based on my personal experiences and observations. People who display rage when frustrated are unable to restrain themselves without proper motivation to prevent the rage from occurring in the first place. They will continue to express their frustration with rage until they have “crossed the line”. They will push the limits of others’ tolerance until they surpass those limits. They will “go too far”. That’s what rage is. They will only learn to prevent themselves from rage after they have gone “too far” and suffered the consequences. Dozens of times over the past 20 plus years, I have seen examples that support my observation and belief. The story I have shared is extreme, and yet the boy I described did learn to control himself after he was kept in custody. It has also been the case in my home, although our “limit” wasn’t as serious. Fortunately for us, things didn’t get too far out of control. They easily could have.

As heartbreaking and scary times had been through my stepson Nathan’s rages, an underlying question directed our responses and our final goal.

The question – How can we motivate ourselves, (or our children), to pre-empt the “going to far” and gain control over rage before it happens?

Clearly rage triggers a biochemical change in a person which then pre-empts choice, reasoning, rational thinking and self control. On the flip side there are deliberate choices, strategies and coping skills that can be utilized to prevent the onset of a rage. Finding the right timing and the motivation to employ learned skills is an extreme mental challenge requiring practice and tremendous support.

See Part 2, Part 3 and Part 4 of Neurologically Gifted’s Series on Rage

Coprolalia Part 3: Taking Action on Coprolalia

Ken Shyminsky ADHD, OCD, ODD, Tourette, Tourette Syndrome, TS

Coprolalia Part 3: Taking Action on Coprolalia

Coprolalia can be a particularly distressing symptom and a lifelong struggle for an individual with Tourette Syndrome. Stigmatization, shame and isolation must be reduced by the efforts of the individual, their families, their community and society. Strategies to manage coprolalia will target improving the acceptance and understanding of this difficult symptom which will in turn reduce the frequency and the intensity of it’s expression.

Understanding the nature of coprolalia is essential to understanding strategies for the management of coprolalia. (Please see Coprolalia Part 1: The Nature of Coprolalia and Coprolalia Part 2: Coping With Coprolalia)

Here are some strategies that take action on coprolalia to reduce it’s impact on well-being.

Use positive language

Planned ignoring of coprolalia is not just ignoring the symptom altogether especially if the behaviour is having a negative or harmful impact on the individual or other members of the family. Be sure to define what negative or harmful impact means for your family. An individual can contribute to the family’s well being whilst consistently ticcing “F**k, f**k”. It is not harmful just because you or someone else does not particularly want to hear it. In fact, a tic as harmless as this example may actually be helpful in directing the individual’s attention away from more harmful forms of coprolalia. When helping to redirect behaviours that are harmful or have negative impact, use positive language at all times. (See Neurologically Gifted’s article: Using Positive Language for Success – coming soon). If coprolalia is loud enough or involves another person you can use positive language to help modify the behaviour or make it less hurtful. For example, “You may say “F**k” but you need to increase the distance from your brother’s ear when you say it”. If coprolalia hurts another person’s feelings you can use positive language to teach responsibility. For example, “You looked at your brother and called him a name. You didn’t mean to, but you hurt your brother’s feelings. You should apologize and ask if he is okay.” Note: this is not apologizing for having Tourette Syndrome and for having tics, it is an apology for having potentially hurt someone’s feelings (a natural consequence).

Use substitution words

Substitution words are words or phrases that can be strategically placed to modify coprolalia. The important aspect of this technique is that the child must be involved in its development and the word or phrase must satisfy the tic. The individual using this technique must also be highly motivated to attempt to modify the behaviour. If they are not invested, this strategy will not work. Always investigate motivation and the ability to invest mental energy into this task. A child who suppresses tics all day and is mentally exhausted will not benefit from mom or dad saying, “Now Johnny, say Fruit Cake, not F***.” Willingness and readiness is essential and it is okay to put this task aside indefinitely if necessary. If there is enough motivation and investment from the individual, involve them with coming up with words that are similar enough to satisfy the tic but may be less offensive. For example, “Shitake” or “Fruit cake”. If the tic is not satisfied the individual is essentially suppressing the tic, causing more focus on the actual tic and increasing stress. Increasing stress on the individual is counter-productive to managing coprolalia.

Here is an example of my son substituting counting from 1-10, (his own idea) to prevent coprolalia from recurring. Caution: Clip contains Coprolalia.

Be Accountable and Responsible

At first glance, being accountable and responsible for your own or your child’s symptom, coprolalia, may seem harsh. Coprolalia is an uncontrollable symptom of a neurological disorder. This is true. They can’t help it and it is not their fault. However consider that being accountable and responsible does not involve finding fault or laying blame. For example – you step on someone’s toe while waiting in line. It was an accident, the other person will assume it was an accident and it wasn’t done on purpose. You would naturally apologize and ask if the other person was okay. You take responsibility and you are accountable for the action however unintended and unwanted. If you sneeze, you may apologize or excuse yourself, if you trip and bump someone you would apologize, if you were startled and screamed and scared someone else you would apologize and or explain. The same should apply to tics and coprolalia which have an impact on others. It does not imply that the individual is willfully or maliciously doing the act. For example, my son has a screaming tic and when his screaming tic and his coprolalia occur together he is screaming profanities. Everyone in our home knows that it is unintentional and an uncontrollable symptom of his Tourette Syndrome. However, sometimes it hurts! It can hurt our ears, it can startle us, it can shock our neighbours and it can hurt our feelings. As a mom with a young son who has a “f***ing b**** a**hole” tic, being barraged daily with these words, I can say that it hurts, it wears me down, and it sometimes makes me sad. No harm is intended and no blame is laid but if he apologizes, it does a few positive things for us all.

Being responsible and accountable for his neurological symptoms gives him power!

He can teach others about his symptoms and his disorder and promote understanding. “Sorry, I didn’t mean to scare you. I have Tourette Syndrome and that was something I can’t control. I can tell you more about it if you would like.”
He can control the effects of his symptoms on others. He can change how others feel and think about him. “Sorry, that was an accident. I have Tourette Syndrome. I sometimes do things I don’t mean to do. I didn’t mean to do that”
He will become a powerful social thinker! He learns to care about what others see of his actions and how they feel about him. Being accountable and responsible means “I know I did something that may have affected you negatively, I care, I am sorry and I did not mean to do that to you”. He will grow to be a caring and kind adult.

Being responsible and accountable for his neurological symptoms makes others feel better!

Just like stepping on my toe, my sonsaying sorry to me for saying “F**k you” makes me feel better. I know he can’t help it but by apologizing I also know he didn’t mean it and that he cares about my feelings.
Apologizing or acknowledging the coprolalia alsoenlightens others, makes them smarter and more tolerant of others. They probably didn’t know it was unintended until there was the apology and explanation. How could they?

For the complete documentary see: Neurologically Gifted’s article, Learning From Kids with Challenging Behaviour: The First Day (coming soon)

Be sure to see our other articles about coprolalia

Coprolalia Myths Demysified

Ken Shyminsky ADHD, OCD, ODD, Tourette, Tourette Syndrome, TS

Coprolalia Myths Demystified

There are several common coprolalia myths one may encounter when learning about Tourette Syndrome. The first big myth is that most people with Tourette Syndrome have coprolalia. This is what is known as TV Tourette… In reality, only 10-15% of people with Tourette have coprolalia and even then it waxes and wanes as do all Tourette Tics. Here are some other Coprolalia Myths…

Coprolalia Myths #1:

Children with coprolalia come from homes where they are exposed to obscene language and/or inappropriate material. False!

Children who have neurological differences with the symptom of coprolalia have brains that work atypically. Despite often being diagnosed with Attention Deficit Disorder, children with ADD or ADHD are not lacking in attention ability but their attention works differently than a typical child. A typical child’s attention manages their environment by attending to what is important, (or what they are directed to), in the particular immediate situation. A child with ADD/ADHD has attention but it most often easily drawn outside the immediate situation and the child is said to be highly distractible. It is not an attention deficit at all but rather the inability to focus that attention where it should be. Often attention is drawn to and captured by what is brightest, what is loudest and what is most inappropriate. There attention flickers through all the available stimuli and if it settles it will do so on language, actions and social situations that are most different, most exciting and socially taboo or inappropriate.

Actually the diagnosis Attention Deficit Disorder is misleading. Ask any parent who’s ADHD child can play video games or watch TV for hours but can’t attend long enough to brush their teeth properly. This phenomena is called hyper focusing and very common in ADHD children. To further add to this, it is easy to focus on things that are interesting, exciting or unusual to us. It takes mental maturity, skill and focused attention to attend to things that we find boring.

So, the stage is set. Their brilliant minds are primed to pick up the most unusual and inappropriate data their roaming focus can find.

By walking through stores, to and from school, around the mall, and every where else, a child with ADHD or TS has their attention pulled to any inappropriate language, visual material and actions of others they find different or interesting. They notice the teens huddled in the corner smoking, using bad language, or spitting on the ground. They notice how they dress, how they look at each other and how others look at them dissatisfied with their behaviour. They notice reference to sexual behaviour and materials and how society tries to shield them from it. They often get adult sarcasm, hints and inferences. They quickly learn what is inappropriate from all these cues and because of the hyper focus and attention to the behaviours, they stick in the child’s mind like glue. My son from a very young age was particularly drawn to teen behaviour. Walking through a mall with him was a struggle. It took a great deal of effort to keep him on task and with me and I could tell instantly when there was some alternate social teen behaviour happening around us. Suddenly he would be still and silent, watching and listening and soaking it all in. He would then recount aloud what he had heard or saw repeatedly and he never forgot his observations. And he was never reluctant to share them with others.

As an example: (Caution: Contains Coprolalia)

These cases are not bad parenting, or abuse or access to adult material that could be prevented. It is simply a hyper attentive mind doing what it does most easily and effectively…finding and perpetuating that which is most exciting and most instigating.

Coprolalia Myths #2:

Children with coprolalia need firmer and more consistent discipline. False!

Children with coprolalia know what they are saying (or doing in the case of copropraxia) is socially unacceptable. That is how they were drawn to learn it. As a matter of fact, the more they understand the behaviour is unacceptable and the more unacceptable it is, the more they will be driven to do it. Simply stated, the worst possible thing to say or do becomes the hardest thing not to say or do. Ask any child if they know what they are saying is wrong or inappropriate and they will tell you, yes. Often they are embarrassed and ashamed by their own uncomfortable symptoms.

Correcting the child or punishing the child is counterproductive and can dramatically increase the chance of it’s occurrence. It creates a dialogue in the child’s head that tells them not to say “@!”, because they will be punished. Don’t say “@!”. My dad really hates when I say “@!”. It’s wrong to say “@!”. I will be sent to my room if I say “@!”. The child ends up consumed with thinking “@!” reinforcing the tic’s neurobiological pathway and making it that much more difficult to prevent its expression. This process of negatively reinforcing the coprolalia adds to the child’s stress level which ultimately makes tics, including coprolalia worse.

The child already knows it is wrong and is usually already punishing themselves internally, creating a negative impact on their self esteem and self worth. Imagine the feeling of being obsessed with doing something you know causes a negative reaction from everyone you care about. The time spent obsessing and worrying about coprolalia leaves the individual less able to manage everything else. Ideally, understanding and knowledge about coprolalia, for the child and adult, helps create a caring environment where the child can grow.

Educate yourself and avoid coprolalia myths.