Happily Ticked Off — The Book, Part 6: Chapter 3

At long last, here is Chapter 3 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

TOC

Chapter 3 — ScholasTIC

Your TS Child (And you, freaked out mama) 

Will Surive Grammar School

Five Years Later

Fourth grade started out like third grade. It had only been three weeks and I’d been stopped by the teacher three times. The first incident was innocuous enough.

“Mrs. Frazer!” Nicky’s teacher, Chris, called to me with a smile.

I internally kicked myself. “All this could have been avoided if I’d picked him up in the carpool line. This thought was quickly replaced with, “Just because you avoid an issue doesn’t make the issue go away. It just prolongs it.”

I had one more thought that went something like, “Stop talking to yourself and pay attention to the teacher- ooooooh, a hummingbird!” at which point I directed my concentration where it belonged. Turns out, if only Nicky had done the same thing, I wouldn’t be standing in the blue door frame of an elementary school room on a Friday afternoon.

“Nicky had a hard time focusing today,” he informed me.

Last year, upon hearing similar words from his third grade teacher, my face dropped like a bad L.A. facelift. I was crushed. Four years into his TS diagnosis, his tics were still pretty minimal. With his penchant for pink umbrellas and impromptu standup routines, I knew he’d never be an academic soldier, dotting his i’s and crossing his t’s with laser like precision. But I was still holding on to the hope that Nicky’s eccentricities wouldn’t mark him as different.

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52 Weeks of TS: Week 37

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 36 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I’m sick! I find it funny how a couple of weeks ago I was talking about people with TS having a poor immune system, especially if you have anxiety disorder. Anxiety disorder can take a huge toll on your immune system, and here I am sick once again. Now besides my normal everyday pain and body ache, I have the ache from being sick.

I hate being sick, but there is a small part of me that likes it. I’ve said this before, but when I’m sick, my tics are very calm, and there’s not much anxiety. I think my body is so focused on fighting the infection, that it somewhat shuts down. It’s nice. My brain is quiet, and my body is somewhat still.

Next week I leave for Tic-apalooza and I’ve been so excited about going, but as the event come closer, my anxiety is building. I think many people that have TS deal with confidence issues. Even though I’m going to be surrounded by people with TS, I’m dealing with self-confidence issues. I know I’m going so I can help. I’m going to be a camp counselor, and I need to be strong and show these kids that we cannot let TS hold us down, or hold us back, and I have to keep that in mind.

I know in the past I have let my social anxiety get in the way of doing things, but this week I did fight my fears. I said last week that I had a wedding to go to this week, and I sucked it up, and went. It ended up being a beautiful event, and a great time had by all. I was glad I could crawl out of my shell and be a part of my friend’s special day.

I saw a few friends that I had not seen in years, and ran into an old client whose son I know has TS. She had just sent him off to college, and we briefly talked about treatment options they have been taking. She was telling me that they had tried many different things, but had recently gone to a Chinese herbalist who had put him on a regimen of herbs for muscle spasms. She went on to tell me that of all of the different treatments he has been on, this one has worked the best, many of his tics had disappeared.

I have heard many things about Chinese herbs working for some people with their TS. Is this a possible answer? Does it help with just the tics, or could it help with all the underlying disorders, too?

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Pioneering the first Tim Howard NJCTS Leadership Academy

Words cannot express how grateful I am to Tim Howard, Melissa Fowler and everyone at the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for my daughter Hallie being given the opportunity to participate in the Tim Howard NJCTS Leadership Academy on August 1-3 at Rutgers University.

To be included in the first incarnation of this academy was so gratifying, meaningful and life-changing. I view Hallie as a pioneer at times — as she navigates her journey with TS — so it is truly fitting that she was able to join with other pioneers to excavate a path for others who share similar challenges in their lives.

Despite the fact that Hallie has spent very little time away from our family, I had no worries about dropping her off at Rutgers to begin that special weekend. In fact, as I got in the car, I felt an overwhelming sense of comfort, and I welled up with tears of pride that I felt for Hallie — a sense of pride that I don’t think I had ever felt before. I can feel it now again, as I am writing this. I suppose it comes from witnessing my child grow and evolve in ways that many adults have not yet achieved, and may never achieve in this lifetime.

I can still remember the first time I noticed Hallie’s TS symptoms (although friends noticed it even sooner, and in hindsight, I had already seen many associated symptoms). We were at the NJ Renaissance Fair, and she was 6 years old — just about to enter first grade. As Hallie was enjoying observing the Renaissance Fair actors delight in a game of human-sized chess, I was busy observing her intense blinking, and her tongue protruding out of her mouth as she opened her mouth every 20 seconds or so.

I was not the only one to notice. There were others watching her — and to me, it felt like everyone there was watching her. Although this was certainly not the case. In that very moment, I felt like pitying her, and admittedly, myself. How horrible is that? I actually felt bad for myself. I just wanted to take it all away from her, because I sensed in that moment that this was not a phase and may be something she was going to have for a very long time, if not her whole life. I thought that people would be staring at her for the rest of her life and may never see her for who she truly is.

It is now 8 years later, and many, many motor and vocal tics have come and gone, and many other associated symptoms that have been even more debilitating have waxed and waned. I also have another daughter who has experienced much the same as Hallie — yet even much worse in terms of intensity. It has been quite the roller-coaster ride.

Throughout all of these challenges, I have experienced my own growth and evolution. I have moved through the pity and self-pity. I have moved through the guilt and shame — and blame — that came later. I can save that for a future post! 🙂 For now, I will simply express that by seeing Hallie transform her adversity into a blessing, she has blessed me, and shown me how to do the same in my life.

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Why is my child mean?

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a 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.

There have been many parent posts online regarding the general and persistent negative behavior patterns of their children.  They describe their children as being “mean” on a regular basis.  It’s not uncommon to see this default behavior 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 behaviors.  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 1:  Identify your child’s behaviors 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/behaviors 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.

Why Is My Child Mean?!?  NeurologicallyGifted.com Continue reading

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

Educators need to be rewarded

I feel as a mom of three young children, with one of them having Tourette Syndrome, that showing our gratitude to our daughter’s teacher — Mrs. R — was one of the best things we have ever done. Our daughter was just diagnosed at age 7 while she was attending Mrs. R’s first-grade class.

She reached out to us and expressed concern for some different behavior our daughter was showing. We followed up on it with our pediatrician and then with a pediatric neurologist. While the diagnosis was a hard one to swallow, we were able to see things in a different light and get our daughter the appropriate help she needed.

Mrs. R has remained in our daughter’s life after first grade as a math tutor. Mrs. R has been tutoring our daughter for three years now and has given her the confidence she needs in herself when it comes to  schoolwork.

Our daughter feels so secure with Mrs. R, who we owe a lot. Math has been the subject our daughter struggles with. It would take her three hours to complete homework when it should only take the average child an hour — maybe hour and a half.

I would be lost without Mrs. R and have told her to never retire. Mrs. R has helped our daughter maintain good grades in math just by making her feel secure and confident. Teachers must be rewarded for outstanding teaching. Mrs. R not only is a teacher, she is now someone we call “friend.”

Our daughter absolutely loves Mrs. R, and Mrs. R loves our daughter. I can see the stress gone from my daughter’s face when it comes to schoolwork. Mrs. R gave us our daughter back, and I will be forever grateful.

NOTE: If you are from New Jersey and are the parent of a child with Tourette Syndrome, you can nominate one of your child’s teachers for the NJ Center for Tourette Syndrome’s 2014 Educator of the Year Award — given out to a New Jersey educator who has gone above and beyond to help a student with TS. Nominations are due by May 1.

I spy new science on tic relief

spies

Everyone in my group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 — the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it — the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the TS scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neurotypical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids.

The best thing I’ve discovered is to not freak out about any “issues” being TS-related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t spend give Tourettes a free pass for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that — let’s get real — are not really flaws. Continue reading

Memory strips

Memory strips are essential teaching tools to assist students who need support with memory recall, organization, making good behavioral choices and using self-regulation strategies. Typically, students who have difficulties with attention because of ADHD, ADD and Tourette Syndrome will benefit from this tool that is easy to create and put into action. Adults and “neuro-typical” children may also benefit from using memory strips in their everyday tasks.

For children with difficulties with organization and memory recall:

Memory strips can provide visual cues for procedural steps for work completion and for improved organization.  For example, children who have difficulties starting or completing tasks may use memory strips to provide a visual checklist to guide them through steps required to complete or improve the quality of their work.  Children who have difficulties with organization can benefit from memory strips reminding them of the things they need to do.

For children with behavioral or self-regulation challenges:

Memory strips can be used to prompt appropriate behavior choices or to provide cues to strategies that can be implemented by the student to ensure success.  Often children who have neurological differences tend toward unwanted behaviors when unsure of what they should do.  The memory strip can be a visual cue to give them choices during these moments and preempt the unwanted behavior.

Here are some examples of simple memory strips I have used to effectively teach students with learning disabilities and/or neurological challenges: Continue reading

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

We just want our son to be happy

When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.

The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!

Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.

I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.

His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.

Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.

Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on. Continue reading