Mothers Tell Stories…

here-comes-the-domAnd so here’s mine. It seems as if the moment my kid hit 13 the teens hit full force. The defiance, the arguing, the overall surliness.

And, well, if I’m being honest, I thought it was going to be one of those deals where my kid, while still totally socially appropriate, would still find me amazing and cool and, despite being busy with friends and outings and Boy Scouts, would want to jump in the car the moment I say, “Hey, who wants to the grocery store and crash the free sample table!”

Every single little dream there? Lost. We’re not talking by a little. We’re talking epic defeat. For one thing, my kid is far from winning any social awards at school. Oh, he has a bunch of friends, but they’re kind of like him… a bit on the wacky side… a little bit clueless on the when girls like them side. (Yes, Stink, if she remembered to call you on your birthday, buy you a gift, buy you a Christmas gift and ask you to teen night, there just might be some interest.) Boy Scouts He doesn’t do uniforms.

Stink and his friends are like oversized male children with skinny legs, crazy fros and a scent that can only be described as a cross between testosterone and Axe.

The difference between him and his other friends, however, is that I can’t make out their duck quacks from across a crowded parking lot. When they roll their eyes, I know it’s because they are being sassy and not because Mr. Flappy Lid has made his appearance again. When his buddies nod, it’s to mean “yes” or “no”, and not the head jerk prodigal son making his triumphant return. (No, I’m not having a banquet for these returning relatives. But if I did, you could bet it would be gluten and dairy free.)

Stink’s tics – the loud ones – are back. And this time, they are stronger than before. (Gosh darnit, Taurine, you let me down again. You’re like that bad boyfriend. Just when I think I can trust you, you leave my sorry butt in a heap of despair!)

Here’s the thing, though: my kid, like his eyes, just roll. He doesn’t see them as a problem. They don’t make him different or geeky or less than. It’s simply something he does, not who he is.

In my brain, this should be enough. But in my heart, I still die a little bit. As a mother of a kid with this wonky disability, I fight so many demons:

  • Do I not love him enough for who he is – including his noises?
  • Do I not love him enough because I’m not making him take meds?
  • If I am not choosing to not put him on medication, then am I ruining his life with my occasional “Keep it down, kid. PLEASE!” (Oh yeah, Saturday’s “G-DAMNIT, STINK, QUIET DOWN FOR ONE SECOND!” was epic. He literally curled into the door frame of the car and didn’t talk to me for ten minutes. He also didn’t tic. And that made it worse. I won! For being a butt wipe! Hooray for me! Send the Mommy Shaming Award my way, FedEx!)
  • And what about his sister? I have spent soooo much extra time with her the past few years – I’ve wanted to… it’s not a challenge – but it’s a balancing act to say the least.

I had a good cry last night. I mean, a good one.

Me: Stink, I’m so sorry. I just suck sometimes. I feel so bad for yelling at you about that noise.

Stink: Mom, it’s okay. (Quack quack) I forgave you already! I don’t keep resentments!

Me: I know, but I feel awful. I just love you so much. I don’t want to ruin you.

Stink: Impossible!

Me: Well, thank you. And hey – I promise – I am not going to ask you to stop ticking again.

Stink: Also impossible! (He’s right. Now I’m really sobbing.) It’s okay to cry, Mom. You got to let it out. (He farts.) Ahhh… it just feels better to release, you know?

I swear, the noises from that kid never stops. But his biggest ticker is his heart. I’m grateful.

And so, once again, I am saying it here: I am determined to not get so wound up on tics. But I can’t do it on my own. I just can’t.

Dear God, get in the car and hang with me. Don’t drive like that Jesus Take the Wheel Song. That would creepy to see a long haired dude in a tunic driving my stinky SUV. But be with me. I need the support. Andrea. PS: I hope you can handle Cheeto crumbs and Country Music. 

Yup, when I give it to God, there’s just so much more perspective.

This morning, after a little praying, it dawned on me that I might not ever accept this disorder. I can, however, accept that it’s sometimes just hard. The reality of what is, not what I want it to be, was not always my first choice toward serenity, but it sure as hell makes for a more a more peaceful reality. I can do something with reality. I can fill bad days with joy. I can walk away from yelling at my kid and stroll in the sunshine instead. I can write. I can pray. I can help another mom who is suffering. (Write me, moms! HappilyTickedOff@Gmail.com).

When God’s at the center of my problem, not my misery, I can relax. I can remember that it’s not my job to make my son disability-free. It’s my job to love him. And boy, do I.

Final Thoughts

Tonight I took a break. It had been a long day of working and cooking and kid pick-upping and homeworking. Instead of sitting at home counting tics doing more Ebay listings, I went with my daughter to a YMCA banquet. She was one of 3 asked to perform for a fund raising event.

Playing Wendy in an upcoming Peter Pan show, she put on her yellow Mary Janes with white ankle socks. She stood straight, hair in bun, and spoke in a sweet British accent, “She’s the person who kisses you goodnight…” and then she sang… “your mother and mine… your mother and mine.”

She went on to sing, “Mothers tell stories… they often do… what you can’t do… mothers can do.”

Raising my kid with Tourettes isn’t unlike my daughter getting up on stage, singing in front of hundreds. I get to hide my fear with my poker face. I get to get dressed every morning (the bun is optional) and I get to sing my heart out because the lights shining on me. And maybe, at the end of the day, my son will remember his mother who loved him enough to write a book, to pen a blog, and hopefully help a few others out there not feel so alone.

“Mothers tell stories, they often do, what you can’t do, mothers can do.”

Moms, you can do it. You can. And worse case, if your day is hard, consider climbing into bed with your family – tics and all. You’ve got one childhood to tell a good story. (Pssst: You are an amazing hero in this story. Give it a good ending!)

my-familyThis post dedicated to Denise, who always seems to show up when I need it most. I am grateful. 

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

“Ducks” and the beginning of our TS journey

When I first suspected and began to research TS I said to myself, okay, okay it will be alright. I am the type of person who will research, read, research, and read whatever I can on any challenge that affects my life. I need to know everything about it so that I can make informed choices. Although I had suspected TS, it was till a bombshell that had exploded, however, I kept moving on for every detail I could find about TS. I was given so much help during this time from the neurologist, PATSA, blogs, books, and movies. The book that I still refer to is “Against Medical Advice,” by James Patterson and Hal Friedman, and the Hallmark movie, “Head of the Class.” These and more helped me so much in the beginning and to this day. I want to be able to help other parents, especially new parents, to know that TS is not a death sentence. It is the beginning of a journey we begin for our children by learning about TS, and the tools they need to be successful, and eventually transfer the reins to them.

My son has TS. We talk about TS as if it is a “Person” or “Entity.” When he was younger, I wanted to identify TS not as something bad, but to get him to understand what he could and could not do in order to control TS as much as possible. One of the other things we do is call his tics “Ducks.” I will say, I think I see a “duck.” Sometimes he will agree, or not. We will go through this a few more times maybe over a week or two, until I say nope, I was wrong, or he realizes that there is really a “duck” roaming around. At that point we will discuss if Competing Responses are necessary, or if he just has to make note of it. We have come a long way from the beginning when we first found out about his diagnoses. He has come a long way, and I am so proud of him. He was accepted and attended the Tim Howard Leadership Academy last summer, and he said on the ride home, “Mom I heard about kids with TS but I never saw any, and I felt like home for the first time.” What more can a mother ask for from her child.

Teen Tommy Licato gets June 4 proclaimed as Tourette Syndrome Awareness Day in South Plainfield

PHOTO BY VICTORIA CARUSO/TAP into South Plainfield — South Plainfield High School student Tommy Licato accepted a proclamation declaring June 4, 2015 as Tourette Syndrome Awareness Day from Mayor Matt Anesh.

The mayor of South Plainfield, N.J., Matt Anesh, has announced that Thursday, June 4 is Tourette Syndrome Awareness Day in the borough and presented a proclamation to South Plainfield High School student Tommy Licato.

An inherited neurological disorder, Tourette Syndrome (TS) affects 1 in 100 children and there are more than 20,000 school-aged children in New Jersey dealing with TS. Characterized by “tics,” TS can strike people of all ethnic and racial backgrounds and although medication came help there is no standard treatment or known cure for this disorder.

“It is important to increase awareness, understanding and support for individuals and families affected by TS as well as the individuals and organizations that are committed to promoting education and awareness about TS to the general public, healthcare community and educational institutions,” said the mayor. “…Tourette Syndrome Awareness Day is a special day to promote understanding, compassion and acceptance for all our fellow citizens who deserve and need our support to break the stigma related to Tourette Syndrome.”

Read the full story here at TAP into South Plainfield.

Tim Howard and NJCTS aim to score with soccer clinic

EDITOR’S NOTE: This story originally appeared on MyCentralJersey.com on April 15.

SOMERVILLE – Not usually one to let a goal get by, acclaimed U.S. soccer goalkeeper Tim Howard is more than happy to make an exception for the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). Howard and NJCTS are looking to score with a soccer clinic fundraiser in June.

Howard, who was diagnosed with Tourette syndrome (TS) as a child, and NJCTS have created Team Up With Tim Howard, a one-day soccer clinic on June 4 featuring the Rutgers University soccer teams at the Rutgers University Soccer Stadium, Yurcak Field in Piscataway. Kicking off a yearlong awareness campaign, the Team Up With Tim Howard soccer clinic will serve to directly benefit August’s NJCTS Tim Howard Leadership Academy, a four-day program from teenagers that focuses on empowerment.

“Last June, the world’s eyes were on me as the goalkeeper for Team USA,” Howard said. “The 2014 FIFA World Cup in Brazil was the experience of a lifetime, one which I treasure. Not only was I able to play my best, but I was able to bring Tourette syndrome to the world stage. I have made it my goal to debunk the myths and bullying that come with the disorder. I have found that one of the best ways to do this is to educate people.”

While he lives in England as the goalkeeper for the Everton club, Howard, is coming home and will be participating in the clinic. Howard, a native of North Brunswick, gained attention last year as the goalkeeper for Team USA, setting records for his World Cup saves.

Howard has been an integral part of the organization since it was founded. As a man living with TS, Howard is recognized globally as an advocate and role model for those — especially children — who have TS and other neurological disorders.

The hands-on clinic designed to improve soccer skills and provide awareness about TS and associated disorders. Not only will the players learn some great soccer moves, but they will also learn that a person with TS can be anything they want to be — even a world-class soccer player, said Faith Rice, NJCTS executive director and founder.

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UPCOMING WEBINAR: February 25 on Sensory Issues at Home & at School

THIS WEEK’S WEBINAR

Making Sense of Sensory Issues – How to manage heightened senses at home and in the classroom

February 25, 2015

Presented by Dr. Michelle Miller, Psy.D., a New York State-licensed clinical psychologist who works at Therapy West, a group practice in Manhattan, and as post-doctoral fellow in the Tourette’s Syndrome Clinic at Rutgers University in Piscataway, N.J.

Over the years, parents and teachers have been increasingly attending to childrens’ sensory-related struggles; however, understanding and supporting sensory problems still remains unclear for so many people who work with children. Research also has suggested that 1 in 6 children are significantly impacted by sensory issues, further highlighting the need for this area to be addressed. This webinar is aimed at exploring what sensory issues are, how they look in different children and adults, and what can be done — both at home and at school — to help children with sensory issues thrive.

REGISTER FOR THIS WEBINAR »

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“He just can’t control it”

My son, almost 11, was diagnosed with TS about 2 years ago. Looking back, it had been going on for about 2 years prior to his diagnosis with symptoms of sniffing, throat clearing, etc.

Everything became clear during a travel baseball game when he was on the mound to pitch. He could not control his head and neck, except during the actual pitch. High anxiety situations and fatigue provoke his tics.

Currently, the tics are controlled with a low dose anxiety medication. BUT the behavioral characteristics of a pre-adolescent, pre-puberty, pre-teen is our main concern at this time. It is exhausting to manage! Struggling with dysinhibition, oppositional defiance, rage, etc.

What is breaking my heart at this time is the fact that he is a really good kid, (straight A student in high-ability classes and manages his time with sports) and how hard he is working and fighting to keep it all together all day — only to release his wrath when he gets home on his little brother and sister and parents!

I can tell that he knows what is going on, but just can’t control it.

52 Weeks of TS: Week 38

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 37 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

My life is a waste of time. Now don’t jump to conclusions and take that the wrong way. The reason I’m saying this is because I waste so much time in my life. I don’t think many people realize how much time is wasted having TS. I often wonder how much more free time I’d have if I wasn’t so focused on ticcing, or suppressing my tics, and don’t even get me started on how much time I waste with my OCD’s. Having TS is a full-time job, and I’m not being paid for it. I need to go to the human resources department and find out where my paycheck is.

The reason I am talking about wasting time has to do with a big event I was part of this week. Yep, I’m talking about Tic-apalooza. I packed all my stuff a week before leaving because I’m so OCD, but because of my OCD, the night before I left, I had to unpack all of my stuff and repack it just so I was sure I had everything I needed.

I was leaving the safety of my home, and going somewhere where I knew I was not going to be able to run to the store and get anything I forgot. Yes, I made sure I had my basic stuff; clothes, sleeping bag, etc. However, that was not my main concern. I needed to make sure I had enough hand sanitizer, Lysol, tissues, and hand wipes. I was headed to the wilderness with a bunch of kids, I was not messing around, and no germs were getting in this body.

As for Tic-apalooza, what can I say? I’m somewhat left speechless. It’s hard to put this weekend into words, but I’m going to try. Here’s a few. Amazing, astonishing, remarkably incredible, miraculously mind-blowing. I guess you could say I had a wonderful time. I was having anxiety about venturing to this camp, and worried about spending time with so many kids, and dealing with my OCD’s, but I went and felt completely at home. There were over fifty campers with TS, and it was such an inspiring weekend.

There was no hesitation in my mind that volunteering to be a counselor for this event was the right thing to do. However, I was concerned because this was the first time I had been a camp counselor. In fact, this was the first time ever going to camp; I never had the opportunity to go away to camp as a kid, which brought on more excitement and trepidation.

It was such an incredible experience to spend the weekend with these brave fifty kids. Friday morning when I arrived at the camp, I was excited when I saw numerous hand sanitizer machines all over the mess hall. Even though I brought enough for the whole camp, it was a great feeling to know that they had some all over the camp.

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UPCOMING WEBINAR: January 21 on Habit Reversal Therapy

THIS WEEK’S WEBINAR

Creative Applications of Exposure Therapy and Habit Reversal Therapy

January 21, 2015

Presented by Dr. Joelle Beecher-McGovern, a clinical psychotherapist at the Child & Adolescent OCD, Tic, Trich & Anxiety Group (COTTAGe) in the Department of Psychiatry at the University of Pennsylvania School of Medicine.

Cognitive-behavioral therapy has strong experiential support for a number of psychiatric disorders among children and adolescents. It includes several treatment modalities, including exposure therapy for pediatric anxiety and habit reversal training for tic disorders and trichotillomania. Despite the strong evidence for these treatments, they can be difficult for children and families to implement for a number of reasons, including logistical barriers, motivation issues and difficulties with follow-through in out-of-session work.

In this presentation, Dr. Hilary Dingfelder will briefly describe these treatment modalities and discuss some of the practical issues associated with implementing these treatments with children and adolescents. Dr. Dingfelder will then discuss some creative applications of these strategies to enhance these treatments for children and adolescents. Examples of areas that will be covered include:

  1. How technology can be used to supplement treatment (e.g., using the smart phone to monitor progress or supplement exposures)
  2. How to strengthen reward plans to improvement motivation
  3. Creative ways to enhance exposures with young children (e.g., through the use of games and puppets).

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Applications for 2015 Tim Howard NJCTS Leadership Academy accepted through January 30!

The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity and will be accepted through Friday, January 30.

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially. collage2

UPCOMING WEBINAR: November 12 on getting kids motivated for school

THIS WEEK’S WEBINAR

Getting Kids Motivated for School: Strategies to foster your child/teen’s motivation to achieve in school

November 12, 2014

Presented by Dr. Graham Hartke, is a licensed psychologist in private practice in Roseland, N.J.

As our schools continue to increase curriculum, testing, and workload standards, many kids and teens are struggling to stay motivated in school. These are students who do not like school, struggle to complete homework, procrastinate often, have slipping grades, are bored, say they “don’t care about school”, avoid school work, get in trouble, are disorganized, and/or feel disconnected from classroom learning.

This webinar focuses on strategies parents and educators can use to increase student motivation to succeed in school. Strategies will address the causes of low motivation, learning difficulties, improving the homework process, improving organization, and reducing procrastination.

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

 

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

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