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One of my Tourette’s pet peeves

One of my pet peeves is labeling mild/moderate/severe as if it’s an issue of “you’re mild, be thankful it isn’t worse” or “you’re severe, oh I feel so bad for you.” The issues of Tourette’s are much more complex than that and everyone should be looked at as an individual and how their symptoms are affecting them and not just whether it fits someone else’s definition of severity.

RAGE!!! Part 4: Prepare a plan

Ken Shyminskya 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.

Rage tends to make family members feel hopeless and out of control.  We began our discussion in Neurologically Gifted’s article Rage 1:  About Rage.  Preparing a plan to deal with rage in the home puts an end to those feelings of hopelessness.  With a predetermined plan, you will have responses and strategies that you and your family can rely on.  You will now have something you can do about it.

When preparing to take on rage in our home, we stepped back to observe carefully what was happening.  We watched for triggers for our son’s rage, how it occurred, and how we responded.  In doing so, we were able to uncover our own (ineffective) default behaviors.  (See Neurologically Gifted’s Article Rage 2:  Look, Listen and Focus).

Once we had identified the behaviors in our family (rage, triggers and responses), we sat down with our son to discuss those patterns.  We openly and honestly discussed our feelings.  With care and support, we helped our son explore what he felt before, during and after a rage episode.  We made it clear to him that this was a family problem and that as a family we could find solutions and improve our situation.  (See Neurologically Gifted’s Article Rage 3: Talk About Rage.)  With this critical step completed, it was time to for us to make a family plan to get control over rage in our home.

Make House Rules

  • Rage 4 NeurologicallyGifted.comMake rules with your child.  Ask them what rules they think should be included.  Prompt them by letting them know that the rules will apply to everyone in the family.  Ask them how they would NOT want to be treated by others.  Ask if there are things they would like to change by making a rule.  Discuss with your child why the rule is important and the natural consequences of non-compliance to the rule.  
  • Guide your child through the rule making process.  Keep rules simple and concise for easy recall.  
  • Do not over-burden the process with too many rules.  Choose your battles, picking only rules that apply to your greatest challenges. Over time, your child will become better able to self-regulate their emotions and responses.  As your family begins to experience progress you will be able to change your focus and rules to address other priorities.
  • Keep rules obtainable and focus on safety.  For example, a rule prohibiting swearing is not realistic for a child with coprolalia.  A rule prohibiting anger or frustration isn’t appropriate either as we all have feelings.  In such a case, the family rule could outline acceptable ways (and places) to express anger and frustration.   You want your child to be successful, gain confidence and learn to apply skills for managing their emotions throughout this process.  
  • Keep copies close by for quick reference.  Having the rules posted in their personal space as well, will allow the child time to review expected behaviors and natural consequences of prior behaviors.  In our home, we placed a copy in our son’s bedroom, and referred to them at bedtime when we debriefed the day’s successes and challenges.
  • When referring to the rules:  Give kind and gentle reminders.  Reminders could include what the family (including the child) agreed would promote a safer and more peaceful environment.  Referencing the rules on paper takes the blame/authority away from the offender/enforcer and places it on the family rules.  A child is less likely to express anger towards a predetermined rule, rather than to being told to stop what they are doing by a parent.   Avoid trying to catch your child breaking the rules or to use the rules in a punitive manner.  You are attempting to use the rules to guide them in a predetermined way to modify their rage, not to punish them. Continue reading

Mouthpieces/dental appliances for tics and Tourettes

Now that I’m working full time in social media, I’ve learned a heck of a lot. I will share it with you!

  1. I’m not very interested in social media. Sound bites? Twittering? Constantly moving targets that may or may not produce the elusive “viral” content needed for Internet Gold? Not for this lady. I’ll stick to old fashioned content, books and real conversations like the ones we have in the quiet days of, um, you know, conversations. Blogs? Those works, too. I give them an upgrade from Facebook, Instagram and Snap Chat two-second humming bird OOOH LOOK YOU LIKE ME thumbs up signs for comments no one really gives a crap about two seconds after their inflated ego has been pumped up. At least you’re here you’re here on your own volition, not because I was “recommended” to you from a shoe site, pizza Groupon, or tampon ad. For that, I whole heartedly thank you for sticking with my neuroses, ramblings and ranting vociferous vocal spews for the past five years.
  2. When/If my book ever gets done, I will completely, 100%, like a complete hypocrite – do all the aforesaid stuff in #1 for a year until I silently implode and then quit my day job, rent an aqua blue RV, and drive around the country asking you to meet me for coffee and/or an alcoholic beverage – depending on where I’m at on my healthy living journey.
  3. While I might not enjoy the fast pace of social media, I have learned so much from my actual job that I’m grateful for. (And not just because the HR person who hired me stalks this blog. You know who you are, beautiful friend! Don’t fire me. Or do it. I don’t care. I can totally go back to make $15.97/week on my Ebay sales. I’m that talented and flexible!) What I have learned is that creativity and emotion are lovely, but if I don’t show up on time and organize my thoughts in coherent ways that effectively communicate to others, it’s nothing but feral madness. There is a place for research and fact digging. It’s crucial to pause and ask the deeper questions: What articles worked best? Why?

I am applying this “duh” knowledge to my own blog at Happily Ticked Off. While I know, from all your lovely e-mails and notes to me, that you appreciate having a comrade in your tic journey, the biggest stats by far have come from posts that talk about curing tics and Tourettes.

Not unlike my bosses who cut my paycheck, they want results, and so do you. And so, I have some more answers for you!

A lovely dad, Alan, graciously wrote me about his son’s experiences using the mouthpiece. While he did not see Dr. Sims or Stacks, as mentioned in my first article, he used a new doc that was trained by Dr. Sims. This gives me a bit of hope. Either:

  1. Dentists are taking advantage of desperate parents who will do anything to help their kids.
  2. These mouthpieces just might work for some patients.

As an optimist, and someone who could be accused of being predatory when I begin my membership site this summer, I am in Camp #2. I think there are options out there that make a difference. I believe in good people who want to share their experiences to make life easier for others. If they make a small living at it, good for them.

While the mouth pieces (and most likely my membership site) won’t work for all people, they just might work for some. That’s good enough for me. So, onto the interview … Continue reading

List of all upcoming and archived webinars, including March 26 on creative arts therapy

THIS WEEK’S WEBINAR

Using Creative Arts in Therapy: Benefits of Music, Dance/Movement and Art

March 26, 2014
Presented by Kathleen Nace, MT-BC, NMT

Creative Arts Therapy provides the opportunity to develop social skills, self-awareness, expressive and receptive language, self-esteem, and adaptive coping skills by providing a motivating modality for participants and self-expression and participation.

Participants in this webinar will learn how these modalities can be individually modified or adapted to fit a variety of needs and work with multiple ages and populations (Tourette Syndrome, ADHD, Autism, Anxiety, TBI, Cerebral Palsy, etc.).

REGISTER FOR THIS WEBINAR »
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NJ Walks for TS at Princeton is right around the corner!

Here is a blog post from our daughter, Tess, who is helping us and the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) put on the 1st NJ Walks for TS at Princeton on Sunday, April 6:

A few months ago, I talked about the NJ Walks for TS at Mercer County Park (near Princeton township) which will take place on Sunday, April 6. Registration will begin at 1 p.m. and the walk will start at 2 p.m. I’m urging you to please come join me there and help support NJCTS.

The money raised will be applied to the Children’s Scholarship Fund, a program that has helped more than 200 high school seniors with TS. Our goal for this fundraising walk is $10,000, and if we want to be able to achieve this, we will need the support of everyone in the central and southern New Jersey TS community.

This walk can make a big difference! It means so much to me, and it is a wonderful and fun way for us to help NJCTS — which is an important organization to all of us! If you can’t attend the walk, please consider making a donation.

Thank you! Hope to see you there!

~ Tess

School meetings: How to make them easier

Ken Shyminskya 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.

School meetings are most often difficult for the parent but so important for your child.  Your child is special, requires special accommodations, your child’s behavior doesn’t follow the normal or expected behavior or your child isn’t learning as well as he or she could.

Perhaps it’s not your first meeting or perhaps the strategies being implemented aren’t working.  Perhaps your child’s teacher or school administration isn’t understanding your child’s difficulties and differences or are unable to offer help.  In any case, it usually provides for a stressful time for the parent … trying to make things better for your child.

I have attended countless school meetings.  My son, having Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder, provides an unending barrage of challenges for the adults who help to shape his life.

Some of these school meetings have gone well, some have been a complete disaster.  I have survived them, dreaded them and finally, I now feel blessed that the adults in my child’s school understand his differences, see his challenges and strengths, listen to him and help to guide him and teach him.

School Meetings  NeurologicallyGiftedIn the past, have been at school meetings because my child was suspended for behaviour that was out of his control.  I have been to school meetings where I have been face to face with an adult who told my son he was faking and didn’t have Tourette Syndrome or coprolalia.

I have been to school meetings where I have been asked to keep my child home for all or part of school days.  I have been to school meetings where administration has asked my child’s psychiatrist how they can “turn a blind eye to his behavior and just let him get away with it?”  It has been a very heartbreaking and difficult road.

I have not always been able to follow these tips that I will share, but I do know that even the really, really bad school meetings would have been a little better if I had been able to remember these tips for school meetings: Continue reading

Instructional tools from Social Thinking: A Teacher’s Review

Ken Shyminskya 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.

Social skills and social thinking are not easy for children who have neurological disorder.  Careful and intense instruction can help a child learn these skills which will improve their capacity to learn in all areas.

Before I give my support to these instructional tools, I’d like to state that I have no financial interests in this resource and receive nothing from the author or publisher.  I’ve merely used the resource and found it to be an effective tool for teaching children with behavior challenges to make positive changes in their lives.  In fact, I was so impressed with the resources, that I purchased a set for my stepson’s (self-contained behavior) classroom teacher. Using the resources together, we were able to establish common language and understanding to support my stepson’s profound behavior challenges at school and at home.

Profoundly challenged by TS, OCD and ADHD, my stepson had absolutely no self-regulation skills.  He lived his entire 10 years (at that time) “in the moment” that he was experiencing.  He’d hyper-focus on himself only, and gave absolutely no thought to future or past events or to others in any given situation.

Even if he was given candy, it would be forgotten (forever more) as soon as it was out of his sight.  He did not connect responses of other people to past events or behaviours.  Without any ability to control himself, he was unaware of “cause and effect“.  He didn’t even see “the effect”. He’d wonder why he was in trouble, react with violence, be consequenced, then move on (without learning anything to prevent recurrences).

As a special education teacher with more than 20 years of teaching experience, I can confidently state that these resources were tremendously helpful.  When challenging behaviors arose, my family members were able to identify the behavior (“You’re seem to have a bit of a Glassman acting in you” or “I’m sorry, that was a total Topic Twistermeister”).

Although there are a number of resources listed on the website, my spouse and I selected two story booklets and a teacher’s resource.  The first booklet is titled, “”You are a Social Detective”, the second is titled, Superflex”, and the teacher resource is titled, “Superflex… A Superhero Social Thinking Curriculum.”

Instructional Thinking Superflex Curriculum: Neurologically Gifted Social Thinking

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