What do you choose?

A new school year is a new beginning.  In our house, there’s a combination of excitement and anxiety right about now.  We’re coming off the high of a breakthrough summer for both Maddie and Max who spent 7 weeks at sleepaway camp.  When they were each diagnosed with Tourette at the age of 5, I wouldn’t have believed this day would come.  They both grew beautifully and had a great experience despite some typical homesickness and social challenges.  Medications were managed seamlessly and to both the kids felt “normal” as their bunkmates were frequenting the infirmary for their own meds.  So many kids take something on a regular basis which certainly helps to normalize the experience for kids like mine.

As a self-awareness junky and coach, I spent time while the kids were away reflecting on the experience of them being at camp.  What I noticed was a mix of anxiety*, excitement that we could all handle the separation and the awareness that part of the reason the kids were able to go away was simply that husband and I believed they could.  We had confidence that they would be okay.  Who we are in our parenting (supportive, doubting, trusting, nervous…all of it) is absorbed by our children.  When our child has special needs, the natural worries of raising a child become amplified.  I get that on a cellular level given my own experience.  What I didn’t know until I began the journey into my own inner work, is that even a parent of a child with differences gets to choose.  We get a say in how we relate to them, how we relate to ourselves as their parent and how we relate to their unique journey.  I choose to relate to my children as whole and perfect just the way they are.  I choose to stand for them to push past discomfort and overcome obstacles with pride.  I choose to notice when my own fears about who they are and who they are not are creeping into the space so that I don’t map those fears onto them.  I choose to honor and embrace their differences.  I choose to learn from them and to love them fully.  And I choose forgiveness for myself and for them in the moments when I forget all of this.

As the new school year brings with it jitters, excitement and maybe even new tics, I invite you to become present to a new beginning, wiping the slate clean from last school year and the summer.  Get intentional about who you will be as a parent; acceptance, love, strength, resilience, light, stability, belief…  Boldly choose and then post reminders in places around your home where you look often: the bathroom mirror, the back of your front door, in your bedroom.   Practice self-forgiveness when you forget your choice (because inevitability you will) and then get back on track.

I’ve heard from so many TS parents who have read my posts and found comfort in knowing they are not alone.  I am grateful for the opportunity to support others on a similar journey.  As always, I am happy to chat, to provide some mentoring or to simply listen.  As a Mom who gets it, sometimes just knowing that you’re not alone is enough to get through a rough patch.

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

 

*Yeh…anxiety is a part of me.  What if they aren’t happy?  What if their tics flare and they are made fun of?  What if they don’t get enough sleep and they become overly emotionally as a results?  What if… What if… What if….

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

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.

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.

Looking for guidance and support for my newly diagnosed son

My 12 year old son was diagnosed with Tourette in early 2015. He experiences mostly physical tics. He also deals with ADHD, OCD, some anxiety but mostly ODD. We live in a remote area with little to no support on this matter. I have researched and read all that I can, in addition to traveling many hours to a specialist which didn’t offer any help.

I am desperate to find some guidance, support and answers on how to help him, as well as our family, control his behavior. He is a loving, very intelligent, active person but his lack of impulse control and other classic symptoms get in the way of letting that come through.

Although it is difficult for me to share, I really need to try other avenues for help and think that this might be a great place to start. Who knows what doors it could open.

20 Ways to Reduce Tics

family-11

As many of you know, I’m all about raising a kid whose spirit outweighs a few tics. But now that my baby is, gulp, a month shy of 13, it’s become apparent yet again to take a look at management. His tics are loud. I mean, so loud and startling at times that this morning I yelled, “Holy Tic Man, take it down a notch!”

I get that he can’t help ticking. And I’m beyond happy that he’s okay with his Tourettes. (I know that many of your babies are not as comfortable with them. We deal with other issues and believe me, I get the heartbreak. You have an ally in me!)

But here’s the deal: I suffer from anxiety. I do. It’s waaaaay better now than it’s ever been, but here’s why. I don’t get to sit around all day and tell my husband through tears, “Ohhhh, I can’t work and pay the mortgage. I’m having a pity party and you’re not invited.” No. I take responsibility for my tendency to feel more neurotic than Willy Allen on 3 cups of Expresso fearful at times. I:

  • Eat well
  • Exercise
  • Take a little bit of Zoloft
  • Go to a few meetings each week
  • Talk to a therapist when I feel overwhelmed
  • Sleep well
  • Stay off of all mind alterating substances (No doobage and booze for this gal. I’ve been tempted lately, believe me, but I refrain.)
  • 2 cups of regular coffee in the morning only

The same has become true for Stink. The time has come for him to be a bit more pro-active with his vocal outbursts. If he can’t control them on his own (which apparently he can’t) we get to help him. We are the parents. We make the rules.

If you’re in that boat of wanting to suppress tics, here are some options for you.

BASICS (We’re on all of this except the dairy. That’s next.)

  1. Limit Screen time
  2. Insist on at least 30 minutes of exercise every day
  3. Limit sugar, food dyes and artificial flavors.
  4. Insist on a strong multi-vitamin
  5. Insist on a really good night sleep
  6. Get off gluten
  7. Get off dairy

MORE ADVANCED (We have the doctor and we started the magnesium. Next is the Taurine)

9. Naturopath – find one in your area that will take an integrative approach to tics. Ask him or her about supplements.

10. Supplements – Ask your naturopath about Taurine, Magnesium, a good fish oil

SUPER INDEPTH (This is happening in January after Ticmas Christmas.)

11. Salvia Test: Complete a 23andme.com‘s genetic saliva test to see what his DNA has to show for itself. Once you know, your doctor can see what is working in his body and what is not and treat it more efficiently.

12. Finger Stick Food Allergy – Get a finger stick food allergy panel by Alletess Labs.  Cost is $120. The test kit is sent to you, you can perform it in the convenience of your home and and then ship directly to the lab. Have results sent to your doctor. Once you know what your child is allergic to, you can start eliminating offending foods.

BONUS OPTIONS

13. GAPS: The GAPS diet is very intricate, but it has stunning results. In a nutshell, it heals the stomach lining so that food no longer slips through the holes, hits the blood stream and causes brain inflammation (which can cause tics.) Personally I would not resort to this diet without knowing if your child does indeed have a leaky gut. I would work with a naturopath on this.

14. Hemp Oil: There has been much research lately about the non-habit forming part of the pot leaf providing tremendous relief (or shall we say “re-leaf” for tics and twitches. Here is a link that someone in my Twitch and Bitch provided. Her son’s tics were so bad he had to miss school. They are 90% reduced now.

15. CBT: Known as Cognitive Behavior Therapy, this technique allows a child to transfer a loud or strong tic into one that is quieter and less obvious. It requires a certified therapist to work with your child.

16. Meditation: Just 30 minutes of meditation per day can rewire neurons and calm down the dopamine that causes tics. Learning to breathe and center oneself can keep give your child an opportunity to have more control.

17. Therapy: Having your child talk to a therapist can be huge in teaching them how to advocate for themselves. It’s crucial (in my humble opinion) to have them see their part in everything. While they can’t control tics, they can control how they advocate for themselves and how they behave toward others.

18. Treat the other Conditions: Most kids with tics have other issues. Often times when one treats the ADHD or the OCD (or whatever else is present) the child is calmer and the tics become fewer.

19. Hobbies: Insist on helping them find a hobby they love: Often times when a child finds something they are passionate about, the tics become less when they are focused on it.

20. Love Them and Have Fun: That is the best tip of all. Your child might not always remember a tic free childhood, but they will hopefully remember one filled with the support of people who adored them no matter what.

AF1

Come back this week as I’ll break down this list over the course of the next six weeks, giving more detail on each tip.

Until then, may God grant you the serenity to accept the tics you cannot change, change the tics you can, and have the wisdom to know the difference.

My book, Happily Ticked Off, is available on Pre-Order on Amazon. Get your copy today!

Happily Ticked offIf you would like to read more from me, please check me out on my new website, http://www.andreafrazerwrites.com.

Next Wednesday Webinar “Anxiety & Test Taking in School” is August 19

LOGO2Join us for our next webinar in the Wednesday Webinar series on August 19, 2015, from 7:30pm to 8:30pm EST.

Students from elementary to high school are taking more tests than ever. How does the anxiety around testing affect them and their results? This webinar will give parents and students alike ways to identify stressors and help students cope with the anxiety around test taking.

Dr. Colleen Martinez is a licensed clinical social worker and a registered play therapy supervisor with more than 20 years experience providing clinical services to children and their families. She has worked in hospital, correctional, outpatient mental health, private practice, and school settings, and specializes in play therapy and treating children. In her private practice, she provides supervision and consultation to individuals and agencies, particularly regarding interventions with children. She provides school based play therapy to preschoolers in Irvington, NJ and is also a part time lecturer at Rutgers University in their MSW program.

Register for the webinar

After registering you will receive a confirmation email containing information about how to join the Webinar.

Teaching Compassion for Kids with Anxiety Disorder

Editors note: Earlier this spring, the Bergen Record published a series about kids and anxiety. The series focused on how anxiety affects North Jersey kids, their families, school systems, and the mental health community. TS Parents Online contributor TomO was inspired to write the following letter in response.

Photo illustration: JOHN TOMAC/The Record

Photo illustration: JOHN TOMAC/The Record

Anxiety disorder

a serious issue

Regarding “Child’s fear can become parents’ nightmare” (Page BL-1, April 12):

I am hopeful that parents, schools, friends and neighbors take the time to educate themselves and understand that this is an illness. It is not something that a child, or adult, has any choice about – they must live with the anxiety, and the disease has control over them. I am a father of a 14-year-old and I am very proud of him. He has been diagnosed with anxiety disorder.

As The Record article states, it is very difficult for families to deal with these illnesses. It wears you down, poses a financial burden, and you never know what to expect next. The lack of understanding from colleagues, families, schools, communities and friends is heartbreaking to experience.

I can’t begin to tell you how many times my wife and I get “the look” in a restaurant or have had to leave a social or family function.

“What’s wrong with you?” “Can’t you control your child?” “What kind of parents are you?” These are the negative messages conveyed by the judgmental glances.

I once offered to a school official a chance to have a content expert come into the school and talk about the impact anxiety disorder has on people. I was told by the school: no. I was told that school wouldn’t be the appropriate place.

If not at schools, then where is the appropriate place? Anxiety is one of the leading illnesses in children and teens today. What is more important than teaching our children compassion for other children’s struggles?

52 Weeks of TS: Week 52

EDITOR’S NOTE: Over the past year on Tuesdays, noted Tourette Syndrome advocate Troye Evers has shared his “52 Weeks of TS” blog journal with the TSParentsOnline community. This is the LAST week of this series, so there’s a chance you missed one or more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

Is it really here? Have we reached the 52nd week of this series? From doctor appointments to social events, from new tics to new jobs, I have expressed it all and I have learned and grown from the whole experience. I’m sad that I have reached the end, but excited for what will come in the future.

But I’m still led to ask, “Why do I do this to myself?” Why are there certain occasions that I still let fear and embarrassment rule my life and cause me to be this untrue version of myself? The answer is easy, it’s those judging eyes. It’s much easier when you’re dealing with a one on one situation, but when you have a room full of people looking at you, staring at you, judging you, it can be hard.

It brings me back to my school days, sitting in the classroom and having all my peers and teacher looking at me. The only difference now is that I have an explanation. I know what to say to someone who asks that dreaded question, “Why are you doing that with your head?” but there is still that fear of people asking.

The rest of the week went well, but just more running around and very little time to rest. Besides working, I also was planning a  dinner for my co-workers. I have OCD, and for some reason I think it would be a good idea to invite 10 people over to my house for dinner. Do I really want 10 people walking around my safe zone, spreading germs, making messes, and moving and touching my stuff?

Well, I guess it’s too late. I opened my big mouth. Having a dinner party with this amount of people takes a lot of planning and organization, which is fine with my OCD and anxiety disorder. However, did I really need to set the table a week before the party? Yep, a week before hand. My husband questioned me about why I set it so early and I explained to him that I did not have time during the week to do it. Really? The truth is I’m OCD. I had to set it up early enough so I would know it was perfect. Everything had to be in the right place, and I needed to make sure it was all organized correctly.

Despite all my OCD’s the dinner went very well. Normally with an event like this, I would have asked everyone to take off their shoes as not to spread the germs of the NYC streets all over my apartment, but I was not able to do this. About 30 minutes before everyone arrived, my husband shattered a glass top to a casserole dish. The glass flew everywhere. Besides the kitchen, I found glass in the hallway and living room. We tried to clean it all up, but I knew there still might be a piece somewhere. Now the decision has come. I would much rather the germs of NYC in my apartment than the chance of someone’s blood.

How does my mind go to this extreme? Am I really OK with dirt from the streets on my floor, but not blood? I mean I could always mop the floor and sanitize them to clean up the dirt, but what if the blood touched me? OK, I know it sounds insane, but for me blood leads to death. What if someone has some deadly disease and they cut themselves and then I cut myself? OK, it doesn’t sound insane, IT IS INSANE!

Basically, what I’m saying is that a broken glass in the kitchen will lead to my death. Are you kidding me? I know I need to calm down about some things, but this is how I am. Everyone came over and we had a delicious meal (and everyone kept their shoes on, so I’m glad to say the grim reaper will not be making a stop at place anytime too soon.)

As I reached the end of the week, I reached the end of this series. It’s been a wonderful year, and I achieved my resolution. I reached out to so many people and educated many of them. I opened my mouth and through my words, I learned more about myself. I think my resolution for the year to come is to not be afraid. To be myself.

The end.