Our Journey

Recently an old friend from college reached out to me after seeing my first NJCTS blog post. We hadn’t spoken in well over 10 years and we were both surprised by this new common bond we had. Her oldest daughter was just diagnosed with Tourette syndrome at age 7. My friend was looking for some support, still processing her daughter’s diagnosis and still reeling from the shock. She wanted to know about our experience having two children with TS.  How old were my kids when they were diagnosed? What were their initial symptoms? How are they doing now? Are they on medication? Which ones? Are they in therapy? How’s it going? How about school? Do they have special accommodations? We immediately knew that a 20 mins phone call wasn’t going to cut it! We need more time and we are in the process of creating that. This experience gave me the idea to write a new blog post. Perhaps other parents of the newly diagnosed had similar questions.

I vividly remember the sinking feeling in my stomach during the early days of Maddie’s diagnosis. I vacillated between worrying about her future, sadness watching her tic (ironically she wasn’t bothered by most of them) and heartbreak that my “normal healthy child” was no longer either of these things. What got me through was the support of other parents. Hearing how well other kids were doing years after diagnosis gave me comfort, relief and strength. So here I am to tell you that both of my children are doing incredibly well. They are thriving in school, very social with lots of friends and active in sports and other community activities.

As a recovering “doer,” after Maddie was diagnosed, I jumped into massive action. I searched high and low for ways to manage/reduce tics. I came across all kinds of recommendations and books. We started with dietary changes. Although a gluten and dairy free diet made no difference, cutting out food dyes and artificial colors did. Limiting chocolate intake and reducing sweets seemed to make an impact as well.
I noticed that after Maddie would recover from an illness, her tics would go into overdrive. I began to research different ways to build the immune system to protect her from getting sick so frequently. As a daycare kid from 4 months of age, Maddie was always fighting something. My friend who is a pharmacist supported me in getting Maddie on a great natural multivitamin, fish oil, a powerful probiotic (gut health is apparently linked to brain function), vitamin c and magnesium. The vitamin section at Whole Foods became a frequent stop for me. We also had Maddie’s tonsils removed. Maddie had 9 bouts of strep by age 6. She was actually diagnosed with PANDAS by one of the three neurologists we took her to. My husband and I noticed a big (and positive) difference in the frequency of her illnesses with these changes. That said, definitely consult your doctor before starting your child on a vitamin regimen. This certainly is not my area of expertise.

The next important area we focused on was school. We immediately got Maddie a tutor (to build her frustration tolerance) and a 504 plan. Some of her accommodations are:
• Provide instruction in a calm, structured setting
• Modify homework assignments as needed
• Energy breaks as needed
• Inform all staff members who have contact with Maddie including substitute teachers of her diagnosis to better understand Maddie’s needs
• Provide a private location (counseling office or nurse’s office) to let tics out and/or emotional release as needed
• Provide staff development on Tourette’s syndrome as to increase awareness and education
• Provide progress monitoring for academic and social/emotional needs reported to parents 2 times per month
• Utilized alternative space for testing taking (study carrel, small table)
• When appropriate provide study guides
• Provide student support to help dissipate tic urges (ie stress ball, chewing gum, hard candy to suck on, etc)
• Provide student support in organization of locker and binders 2x monthly
• Encourage asking for help if needed or if she does not know the answer to a question
• Consultation with guidance counselor 2x per month for September and October
• Modify assessments for spacing in order to make assessment for visually manageable (ie. Reduce the number of math problems on page, reduce the number of graphics, reduce the number of tasks per page, etc.)

Next, my husband and I spoke with Maddie’s neurologist about medication. He recommended that we think about how we would know it was time (if ever) to treat Maddie with medication. My husband and I decided that we would revisit medication if any of three areas of Maddie’s life became negatively impacted by her tics and/or co-morbid anxiety disorder and OCD like behavior. These three areas were: sleep, social and academic. I wrote a letter to the neurologist explaining our rationale. In truth this was more for me than for him. I wanted him to hold me accountable to what I said if/when the day came. Medicating my child was not easy and I was very frightened at the prospect. I needed someone to hold me to my word and not allow me to push treatment off out of fear.
Finally, came counseling for both Maddie and me. We were very blessed to find great therapists. Maddie worked with Dr. Lori Rockmore in Millburn, NJ. Dr. Rockmore taught us about Exposure Therapy. At age 6, this type of therapy worked wonders for Maddie. Her triggers were largely around clothing at that age – a jean skirt that laid funny on her waist, her socks needing to lay perfectly straight on her toes. Dr. Rockmore explained that the earlier we started with Exposure Therapy, the more effective it would be in the future. After success with Dr. Rockmore, when my husband and I start noticing new obsessive behaviors/fears, we began quickly implementing Exposure Therapy. We’ve been fortunate to catch the behaviors early and successfully intervene. Incredibly, through some networking, I was referred to a therapist for me that works with parents of children with TS, Gayle Forman, LCSW, ACSW, MSW. TS is one of Gayle’s areas of expertise and she met me with patience, compassion and strategies to get through flare-ups.

Our journey has been and continues to be unique to us. Our son’s experience of TS has been similar but certainly not the same as our daughters. My intention is to support other parents in their journey. As always, feel free to reach out to me at any time. My commitment is to support other parents through early diagnosis and challenges related to their child’s experience with TS.

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

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