Emotional dysregulation: Just like regular kids, but only moreso!

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

A very dear friend and expert special educator insists that kids who have neurological disorder are just like regular kids …

only moreso!

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).

Emotional Dysregulation:  Neurologically GiftedThis evening, my stepson erupted into a fit of screaming and pounding the floor in a rage over homework, to total recovery and calm. Soon after, he collapsed into a heap of tears as he suddenly recalled the death of his grandmother 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 behavior tonight. He was bound to fall from perfection at some point. He’s been stable and even tempered for months – and it’s because of consistency at home and at school.

Kids with neurological disorders are incredibly susceptible to change, as we all are …

only moreso! Continue reading

Through a child’s eyes

Having any sort of disorder can make a person have to grow up a little bit faster. I remember being a little girl, first diagnosed and not having a care in the world because I was not yet aware of people’s prejudice against being different. I knew it on a surface level, but I didn’t really understand it.

I feel like sometimes as adults we can become jaded due to not only negative memories from our childhood, in which we have come to see a situation for what it was, but also to things we experience once that adult awareness comes in. It’s easier to get hurt and to feel anger or resentment toward others. Compound that with all the other things that come to our attention as we traverse through adulthood.

It’s so easy for us to forget that not everything is personal and that people’s ignorance and fear of the unknown is often what rules their cruelty. When we were children, hopefully, our parents took care of any issues we had and stood up or spoke out for us anytime we encountered antagonism or animosity from peers or elders.

However, once we become adults we have to become our own advocates and that’s hard. We may still have assistance from parents, friends or colleagues, but mostly it is up to us. So how do we do it?

Not everyone has the innate ability to confront someone who has committed a wrong against them or a loved one. Some are pacifists, some are passive-aggressive and others still just weren’t taught how to stand up for themselves.

I am a pacifist and sometimes when I am confronted with situations such as these I get nervous, shaky, and/or forget what I want, need or should say. The key is to take baby steps. Start with little things such as calmly telling someone that what they said was inappropriate.

Also, make sure that you have an advocate go with you or practice what you would say in certain situations or what you are going to say if a situation has arisen where you need to speak up. Note: It’s OK to have cue cards to help you remember what to say. Don’t allow the person to interrupt you and if they do, persevere. Dealing with these things comes easier with time, practice and maturity.

Lastly, it’s important to remember that even if you do have to confront someone, you don’t have to do it in an insulting or threatening manner. It can be done without screaming and yelling and spoken in a calm, yet firm voice.

Coprolalia, Part 2: Coping with Coprolalia

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

Coprolalia: Neurologically GiftedCoprolalia 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. Continue reading

Anger and hope, all in one day!

552849_536119193106180_978517168_nLooking over Corey’s school records, even from before we moved to Missouri, and everything up until this year is great. Grades are awesome. Then all of the sudden, this year things just plunged downhill, right when his Tourette went full swing. I read one part in there where a teacher talks about getting Corey to cooperate with taking books to the library and he says, “Only if I can have a bathroom break,” and she responds that they’ll discuss it! WTF??? Who denies a child a bathroom break??? And they lied about things I said in phone conversations too! Seriously considering a lawyer! I’m one upset mommy!

But … I called Jefferson County Schools (in Colorado) and talked to them about Corey’s situation and they said the best thing to do would be to enroll him in a regular school to start with and have him work with their Special Education Departments because they have classrooms that are specifically set up for student interaction rather than isolation, and he may find that he can be comfortable in a traditional school if he’s not so singled out. If not, they’d test him to see if he’s a candidate for Sobesky Academy. 🙂

Awesome news! He might be able to just go straight back into mainstream school! Just need to get to Denver and find a place in Jefferson County. My research shows me they have the best schools for special needs kids. 🙂 And I might be getting some help from a very amazing woman to help us raise some funds to move. I want to cry! I haven’t had this much hope in so long!

Read more about the journey Corey and I are on at our Tic Tic Boom page on Facebook.

Treatment and coping strategies for rage episodes

The following is the finale in a three-part series first published on the blog of the Tourette Syndrome Foundation of Canada. Read the first part here and the second part here.

Rage episodes are anger outbursts that are out of proportion to the triggering event, they appear to come on suddenly, they are not “tics” but rather are a symptom of having multiple co-occurring conditions in addition to TS like ADHD, OCD and depression.

Rage episodes may result in harm to others and/or destruction of property. Keep in mind that a rage episode can be extremely frightening to the individual having it because they experiences a loss of self-control. After an episode, the person usually feels guilty, humiliated, and in some cases, they may feel that they are evil.

Consider how a rage episode may affect an individual in different scenarios. Continue reading

What causes rage episodes?

The following is the second in a three-part series first published on the blog of the Tourette Syndrome Foundation of Canada. Read the first part here.

Some people with Tourette Syndrome+ experience rage episodes or neurological storms. While it may be tempting to think of a neurological storm as a “rage tic” or an “anger tic,” this is inaccurate. Rage episodes are not actual tics. Research suggests that individuals who have TS only (this means that they do not have any co-occurring conditions like ADHD or OCD) rarely, if ever, have rage episodes. Even in TS-only individuals with severe tics, rage episodes are rare.

Rage episodes are most likely to occur when a person has TS+, that is TS and other conditions called co-occurring conditions or co-morbidities. A child or adult who has TS and co-morbidities such as depression, OCD and ADHD is “at the greatest risk” of having a neurological storm. The greater the severity of the symptoms of the co-occurring conditions, the greater the likelihood of the anger attack. In sum, rage episodes are related to co-occurring conditions, not to the tics themselves.

If you think about what a person with say, ADHD, OCD and TS experiences, it is not hard to understand why someone with TS+ is most likely to have a rage episode. Drs. Budman and Bruun explain: “imagine how the impatience associated with ADHD, when combined with the rigidity and need for perfection of OCD [and the symptoms of TS], can cause some to be much less able to regulate their anger.”

How often do rage episodes happen to a person? Continue reading

Some links and some hard times at school

Hi everyone, I wanted to post a couple of links that I found online and also put on my Tic Tic Boom page on Facebook. I think you’ll find them very useful. Enjoy!

Praising Children for Their Personal Qualities May Backfire

Sleep Reinforces Learning

An Overview of Tics and Tourette Syndrome

On another note, my son had a major meltdown at school yesterday. Corey is being placed on home-based schooling until I can get the stuff I need to homeschool him myself. School is not a safe place for him right now. I knew it would come to this eventually, but I wanted to have everything set up to just pull him out. Feeling really lost right now.

I want to cry, but not in front of him. He won’t talk about it and I don’t know how. I just can’t picture him screaming and cussing at his teachers and throwing stuff around. Not this little boy who is hiding under a blanket on the couch because he thinks he’s in trouble. I just don’t get it.

What is a rage episode?

The following is the first in a three-part series first published on the blog of the Tourette Syndrome Foundation of Canada.

Neurological storms, rage episodes, rage attacks, explosive rage — it has many names. Regardless of the term, they describe the same phenomenon: a person feels unable to control their anger, they explode, they have an outburst of anger. The consequences, like the names and labels, are also many:

  • Embarrassment
  • Remorse
  • Distress
  • Verbal attacks
  • Damage to property
  • Even injury

Many parents of kids with Tourette Syndrome or adults who have TS themselves say that neurological storms are one of the most distressing symptoms of TS+.

A key feature of these outbursts is that they are not usually consistent with the person’s personality.

It is common for parents or teachers to ask, “isn’t this just a temper tantrum?”

The answer is no. Continue reading

A healthy, functioning son is worth more than a mound of medical bills

I am writing in response to the article, “Medical Bills Bankrupt Families of Mentally Ill Children,”  which is a topic poignant to my family at this time.  For the past few weeks, I’ve been checking our mailbox every day, making the walk with a nervous lump in my throat, and returning — hands full of junk mail and heart fuller with worry over a bill that should have been here by now.

Our son, who is 12, has been in a residential treatment program 1,200 miles from home for six weeks now, and we await the bill that weighs on us like a 10-ton question mark.  He is receiving therapy to treat complex symptoms related to Tourette Syndrome and Obsessive Compulsive Disorder.

To our best estimation, the bills we will have received by the time he is discharged some time this spring will cost us anywhere between $15,000 and $400,000 — a big range, but every bit hinging upon whether our insurance company deems this intensive, residential program “medically necessary.”

The hospital required a deposit of $30,000 at the time of admission that would cover our son’s first  30 days of treatment, and we have received notes from our insurance company informing us they’ve approved his first three days, and then five days of treatment — good news, yet little comfort when our son will likely require a 4-plus-month stay at this facility.

Our life prior to his admission is difficult to describe, except to say that we were at a level of nonfunctioning unfathomable to most.  Our son couldn’t tolerate hearing his name and would collapse in pain if he heard it uttered to or in reference to him. Continue reading

The gift of Tourette Syndrome

When my son was about 7, I was really in a dark place. Two years of railing against tics that were present, as well as invisible “what-if” situations that maybe would or maybe would not come to pass in the future, had me very down.

All my gluten-free cooking helped, but it did not erase the minor eye rolls.

All my dedication to prayer and letting go soothed my aching soul, but it did not eradicate the occasional “Tarzan” warble.

My husband – who could fix everything from a leaking toilet to an elephant game whose motor was not longer shooting butterflies into the air – could not fix Tourette. Continue reading