Worry Free Living Month

In the blink of an eye, the holidays are here again.  The excitement and anticipation this time of year can be particularly challenging for children with special needs and naturally, their parents.  Children are faced with so much stimulation, impulses are difficult to suppress, schools are closed and schedule changes throw everyone off.  I could go on…  But what if you could put down (or cut in half) your anxiety and worry about what will be this holiday season?  What would that make possible?  What does it look like in your mind’s eye to have the holidays go a different? I invite you to consider.

I have declared the next 30 days “Worry Free Living Month”.  In fact, I have even enrolled my daughter in the practice.  You see, I struggle with anxiety.  Always have.  I’m a natural worrier and the older I get, the more practice I have with it.  I’m an A+ student at this point.  Here’s the thing though, 85% of what we worry about never happens.  And even when it does, it’s typically not nearly as difficult to handle as we think it will be.  So, I’m basically wasting a whole lot of time and energy worrying with little return on my investment.  Actually, it has cost me more than I’d like to admit over the years: time, energy, money, relationships, inner peace, health, connection, productivity, gratitude, happiness.

Through my Coach Training Program and now as a Mentor Coach with Accomplishment Coaching, my worrying has been a frequent topic of conversation with the program facilitators, my coach and my coaching colleagues.  I’ve never been proud of it but until now I was unable to grasp how insidious it has become in my life.  After a year and half of growth as a practicing coach, I am committed to taking on this shadowy part of me in service of my clients, my children, my husband and myself.  I am committed to creating a holiday season where we can just be together as a family, being with what is and what is not.  Energy once spent trying to change, control and manage will be channeled towards gratitude, appreciation and being in the present moment.  The thing is that there’s an urgency for me to tackle this.  Having two children with their own anxiety, I am crystal clear that staying in my cycle of worry send the clear message to my children that this is THE way to “do” life.  They must feel, see, hear and experience something different so that they see that they get to choose how it will go for them.

Do you see something available for yourself in dropping the worry?  I welcome you to take the trip alongside me.  So that I can support you, please post your declaration in the comments section!

You may be thinking this all sounds great but it will never work for you.  Or, it sounds great but you can’t figure out how to make the change.  While there is absolutely no “right” way to go about making this shift, here are the steps I’ve carved out for myself.  You get to decide your path as the ultimate expert in your own life.

  1. Worrying is a bad habit. And, like any other habit, forming a new one requires gaining clarity on the purpose letting go of the worry.
  • What will life look like without worry? What will dropping the worry make possible that isn’t possible today?
  • By writing down the answers to these questions, and revisiting them over the course of the month, I will continue to re-present myself to what I truly want.
  1. Next, I will generate awareness around my worry.
  • When does it happen? How do I know when it’s happening?
  • What purpose does it serve for me?
  • Becoming mindful of my worry might include writing down every time I have a worried thought or recording the number of times I worry in an hour.
  1. From here I create a new habit to replace the worry.
  • Repeating a mantra in my head when the worry creeps in,
  • Picking up a small ball and dropping it,
  • Stating a gratitude
  • Maintaining my spirituality practice. Connecting to something higher than myself reminds me to let go and trust
  1. Next, enlisting the support of a loved one or friend to keep me accountable.
  • Support can take any form. My husband, mother and daughter will all be charged with holding me accountable at my request.  My husband will remind me twice a day in person, my mom over the phone each morning and my daughter via text at least once a day.
  1. Finally, as a recovering perfectionist, having compassion for myself when I backslide is going to be of utmost importance. No worrying about worrying allowed.

And with that, I’m off…Happy Holidays!

As a reminder, I’m the mother of two children with TS. I am committed to be of service to other parents in the NJCTS community.  I’ll do this by sharing my own experiences on the blog and by providing complimentary parent coaching.  Please contact me for support.

Emily Golden, ACC
Coach & HR Consultant
Golden Resources, LLC
emily@golden-resources.com
www.golden-resources.com

Who will you be in the face of your child’s differences?

During my yoga practice this weekend, my teacher Jess shared something that got me thinking.  She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body.  I can only imagine.  Jess’ friend, whom I assume is another yogi, commented on how wonderful this was.  Jess must have looked at her dumbfounded.  What could be great about all this weight gain?  About feeling like her body was alien to her?  About knowing what lay ahead to get back in shape once she gave birth?  Jess’ friend explained further.  She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar.  Looking at Jess today you’d never know what she went through.  When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind.  It doesn’t matter.  It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it.  No training or book could have prepared Jess the way personal experience has.  So why do I share this story you may wonder?  Simply put, I see my own journey in Jess’.

In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome.  The diagnosis came after months of desperately trying to figure out what was wrong with her.  The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes…  I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting.  Continue reading

Facing a new TS, ADHD, OCD & anxiety diagnosis

My name is Vanessa, and my 7 year old daughter, Angelina was recently diagnosed with Tourettes, ADHD, OCD, anxiety, and a possible language processing delay. Her symptoms are on the mild side.  I am new to all this and I have many questions. Talking to other parents going through the same thing is the best way to learn about all this.

Tourette Research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013Atlantic Neuroscience Institute at Overlook Medical Center routinely offers studies and clinical trials in a range of neurological and movement disorders, including Tourette syndrome. To learn more, please contact Caroline Sabatino, Research Associate, at 908-522-5901. 

 

Pediatric Tourette Trials

Ecopipam Treatment in Tourette syndrome

  • The purpose of this research study is to evaluate the effects an “investigational” drug (ecopipam) has on tics in subjects aged 7-17 years with Tourette syndrome (TS). Investigator: Roger Kurlan, MD

 

Multimodal Dietary Treatment in Tourette syndrome

  • This study is open to patients ages 12 -18 with Tourette syndrome (TS) and aims to evaluate whether a multimodal dietary approach will improve the symptoms of TS. Investigator: Roger Kurlan, MD

 

A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

  • This study is open to children and adolescents ages 6-17 who have Tourette syndrome (TS), and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

Adult Tourette Trials

A Randomized, Double-blind, Placebo-controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

  • This study is open to adults ages 18-64 who have Tourette syndrome (TS) and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

7 Things to Help Reduce Tics!

Editor’s note: We welcome blogger AndreaF back to TSParentsOnline with a follow-up to her popular post from a few years ago. What are your experiences with these methods to reduce tics? We’d love to hear from you.

7-tipsBefore my book came out I was blogging pretty regularly for the New Jersey Center for Tourette Syndrome. One of the posts that garnered 61 comments was on Five Things that Can Help With Tics.

A few years later, and with more research, I have decided to update the list a bit for new parents who keep writing me with the same question.

Question: How do I fix the tics?

Answer: There is no one-size-fits all answer. Every child is different.

What Can You Do If You’re Freaking Out About Tics?

I’m no doctor, but after 10 years at this I can passionately state that all kids tic for a variety of reasons. I, personally, didn’t feel medication was the answer right off the bat for my son. It still isn’t. If it got severe enough, of course I would consider it, but so far it has not.

Here’s what I tell all parents who write me with concerns over their ticking kids. I tell them to ask a few important questions – the same ones I asked myself.

Questions to Ask if Your Child is Ticking

  • Could there be vitamin deficiencies happening?
  • What kind of environmental stressors could be worked on? (Less tension at home, less electronics?, etc.)
  • How much sleep is your child getting?
  • What kind of exercise is your child getting?
  • What does your child’s diet consist of?

It’s Up To You!

None of these questions are meant to either shame or suggest there are simple answers for complicated tic issues. Again, each child is different. My suggestion is to go to a naturopath and have your child evaluated for his/her individual condition. If you are low on funds (which I was) you can start with the basics and see if this helps. It helped in our case and I hope it helps in yours!

supplements

5 Things to Help With Tics

  1. Magnesium: I gave my son 500 mg of magnesium a day, and it really helped with his eye rolls and vocals. For some little kids this might be too much, but I’ve been told the worst thing excess magnesium can do is cause diarrhea. Now my son takes a calcium/magnesium supplement as the magnesium is best absorbed with calcium. The ratio is double the calcium to the magnesium.
  2. Gluten Free: It was a pain, but it helped, and continues to help enormously. He can concentrate more and can fall asleep quickly. When he was not gluten free, it would take hours for him to settle down. He is still a high energy kid, but much less so now.
  3. Dairy Free: Ditto the gluten. It was a pain, but we’ve found many ways to supplement his calcium through rice milk, vegetables and fruit.
  4. Sleep: 10 hours of sleep a night is crucial and a huge tic reducer.
  5. No artificial flavors or preservatives: My son is very sensitive to chemicals. They can set tics off like bees around a honey pot. Not worth the sting of excess tics except on special occasions.

2 Other Supplements * Talk to you Naturopath first * 

6. NAC  – Standing for N-Acetylcysteine, this is an amino acid that can be purchased at any vitamin store. This natural supplement acts as an antioxidant and glutamate modulating agent.

According to this webinar, featuring Dr. Mark Mintz, “They (a study) found the N-acetyl cysteine decreased symptoms of trichotillomania (hair pulling) compared to placebo. It makes theoretical sense as NAC can modulate dopamine. So, there are reports that NAC can improve mood disorders as well (such as obsessive compulsive disorder). There needs to be more research and reports to have a better handle on the effects of NAC in Tourette, but it appears to show some promise.”

7. Taurine – I talk about Taurine here. My son is currently on 500 MG but I think he could use 1000. That said, I will talk to my naturopath first!

What have been your experiences with tics? Did any of you find it made a difference for your children? What about in some of your cases where tics were more severe? Would love to hear!

Until next time, may God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

Going to battle alone

Hello, my name is Candy. I am the mother of three kids and my oldest son, 23 years old, has ADD. My daughter, 16 years old, is doing great in school. And my youngest is 9 1/2 and he has ADHD and was just diagnosed with TS. I’m a bit overwhelmed with it all, and having in-laws whom cannot except anything that there is anything wrong. They don’t know about the TS yet. My husband is also hard to except this as well. I feel like I’m going to battle alone! Any help would be wonderful. Thank you for your time and I hope to hear from you soon.

Being a grandparent to a 15-year-old with Tourette Syndrome is a learning process

I am writing this post because I didn’t want to feel alone in my situation.

Being a grandparent to a young boy of fifteen with Tourette Syndrome is a learning process. He has come to live with my husband and I on a month-to-month basis. His home life with his parents is very stressful now, and I don’t know if it will change. I am concerned  for his future, I am home schooling him now. He is having a lot of difficulty with staying on task and passing tests. He also has ADHD. The medicine he takes does not get rid of his tics. The school that he had been attending tested him to see at what level his capabilities were and he is as low as you can score before being recognized as being disabled. He is between a rock and a hard place, he struggles so hard with school work, but doesn’t qualify for help academically.

I want to find out more about how his condition will effect his ability to have a happy and productive life. It was my understanding that children in his situation will need micromanagement their whole lives. If anyone can talk to me about this, I would really appreciate it.

Looking for wisdom from other TS parents

A few weeks ago, my 10 year old son started having continual vocal and motor tics from morning till night. I found the accelerated process from one day to the next of the tics appearing very overwhelming and frightening. I found his inability to get to sleep because the tics were keeping him awake unbearable. I found taking him to all of the tests of MRI, EEG, bloods,urine, alternative therapists, pediatricians, neurologist etc exhausting and expensive. We have a diagnosis of Tourettes Syndrome and I am struggling….a little less now as the acceptance sets in. Just wanted to connect with other Mothers who have been through a similar experience to get some wisdom from them about how to get through this one for him and me and to get any info about treatments that have worked for their children. Thank You.