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.

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

Why Your Child with Tourettes Will Be Set for Success

Set-for-Success

Last year, while I was pregnant, I wrote about some of the thoughts that ran through my head, particularly about the possibility of genetically passing my Tourettes down to my baby. Apparently, I’m not the only one. I’ve had multiple parents write in to me, concerned about giving their children their disorder.

We know the pain that comes when someone tells you to, “stop that,” because they find our tics annoying. We hate the idea of our children being harassed by playmates, school peers, even coworkers one day because we know we won’t always be there to stick up for them.

I recently received a comment on my post, “6 Ways to Support Your Friend with Tourettes,” from a gentleman, stating his father used to hit him when he ticced because he thought it was on purpose. I know someone personally whose grandmother slapped him when he would tic for the same reason. Books like, “Front of the Class” by Brad Cohen, and “World’s Strongest Librarian,” by Josh Hanagarne record struggles that the authors go through even as adults that involve being thrown out of theaters and restaurants, and struggling to find a job with an employer who can see (or hear) past the tics.

As I type this, I’m watching Jelly Bean sleeping through the monitor. She turned 10 months old this week, and that kid already has my entire being wrapped around her little pinky. Her smile, her slobbery kisses, the sparkle in her eyes, the way she looks at me when I walk into the room makes me want to sob with joy, as well as fear. Like so many other parents with tics, I ask,

“If she inherits my tics, how do I watch her face the cruelty this world heaps onto those who are different?”

You will know that your child is already one step ahead of where you were because your child will have a parent who:

  • will better know how to recognize tics if they appear
  • will better know to bring her to her pediatrician to see if she needs a diagnosis
  • can go to bat for him if he needs extra time at school, by requesting a 504 or educating his school staff about Tourettes (because believe me, not many people know)
  • can share your tricks with him when he struggles to manage his tics in church, or to leave if they become overwhelming
  • can understand and empathize when the tics strike, instead of embarrassing him for it or telling him to quit
  • can help her siblings understand that she needs their support, not their jokes
  • can teach him to self-advocate in situations where his disorder is misunderstood
  • can teach him to educate others about his own condition
  • can help him do his best to find employment where he can soar beyond people’s expectations
  • can build her up so she’s less afraid to tell a significant other about her disorder
  • can help him see that the world is still his…he’ll just have to come at it from a different angle than some other people

We want so desperately to promise our babies that they won’t struggle the way we did. But we can’t. What we can promise is to be their cheerleaders when they stumble, their voices when they can’t speak up for themselves. We can listen when they need to talk, and hug if they need to be held. We can let them know they’re not alone. We can help them learn management techniques that we’ve picked up over the years, and help them develop healthy habits like maintaining healthy diets and regularly exercising. We can make a list of tics and habits for the pediatrician so he knows which direction he should be looking in. We can show our children they deserve to be loved and respected like everyone else. We can love them, not in spite of their tics, but for who they are as whole, complete, real people. We can pray for them until our knees go numb.

Tourettes may have been Hell for your when you were young, but that doesn’t mean it has to be that way for your child. My parents made a world of difference in helping me see myself with the same kind of worth I saw in other people without Tourettes. You can do the same for your children, making their lives better than yours was because you, their parents, care. And that is exactly what our children need.

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.

NJ Walks for TS Honorary Committee Welcomes Congressman Leonard Lance

RepLeonardLance-NJ06Congressman Leonard Lance (R-7) continues his support of NJ Walks for TS at Mendham by joining the event’s Honorary Committee. The 6th annual 5K walk/run at Mendham Borough Park is a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the Education Outreach Program of the NJ Center for Tourette Syndrome which educates students and teachers at schools in every corner of New Jersey about TS, anti-bullying and self-advocacy as well as delivering on-site hospital training for doctors. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Lance is a longtime champion of NJCTS, beginning with his days in the New Jersey State Senate. He is a co-sponsor of federal legislation for Tourette Syndrome and hosts roundtable discussions with families living with the disorder.

“NJCTS is grateful for Congressman Lance’s continued support of NJ Walks for TS at Mendham,” said NJCTS Executive Director Faith W. Rice. “We hope others will follow his lead and step out in support of the thousands of kids and families living with TS in New Jersey today.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Frelinghuysen Joins 6th Annual NJ Walks for TS at Mendham Honorary Committee

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year's event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year’s event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11) continues his support for the NJ Walks movement by joining the Honorary Committee of this year’s event. The 6th annual NJ Walks for TS at Mendham is a 5K walk/run is Saturday, November 14th at Mendham Borough Park designed as a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates healthcare professionals, teachers and students at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Frelinghuysen is an NJCTS supporter and co-sponsor of federal legislation for Tourette Syndrome.

“NJCTS is grateful for Rep. Frelinghuysen’s continued support,” said NJCTS Executive Director Faith W. Rice. “We hope others follow his example of stepping up on behalf of the TS community.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Sires Returns to the Honorary Committee for the 6th Annual NJ Walks for TS at Mendham

SiresCongressman Albio Sires (D-8) continues his support for  New Jersey Walks for TS by joining this year’s Honorary Committee. The sixth annual NJ Walks for TS at Mendham Borough Park will take place this Saturday, Nov. 14th. The 5K walk/run is a day of advocacy, awareness, acceptance and action on behalf of the Tourette Syndrome (TS) community.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates students and teachers at schools in every corner of the state about TS, anti-bullying and self-advocacy, as well as on-site hospital trainings for doctors. Each member of the Honorary Committee has a history of support for the 20,000 New Jersey children living with TS—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Sires has a long history of supporting the TS community in New Jersey. During his days as the New Jersey General Assembly Speaker, he helped obtain funding to create the NJ Center for Tourette Syndrome & Associated Disorders, the nation’s first Center of Excellence for Tourette Syndrome. In Washington, D.C. , Congressman Sires introduced the first federal legislation for Tourette Syndrome.

“Standing up for the TS community is nothing new to Congressman Sires and we’re grateful for his continued support of NJ Walks for TS,” said NJCTS Executive Director Faith W. Rice. “We hope this inspires others to do the same on behalf of children and families living with TS and its associated disorders.”

To join the Honorary Committee, start a team, or register for the walk, call 908-575-7350 or visit www.njcts.org. NJ Walks for TS at Mendham will take place rain or shine, Saturday, Nov. 14th with registration beginning at 8 a.m.

Fifth-grader is Stepping Up Awareness Efforts

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

An inspiring 10 year old is quickly becoming his own best advocate.

Kyle Swords of Pine Brook, NJ, is educating his community about an often misunderstood and misdiagnosed disorder which he faces every day. In kindergarten, he started developing tics and 2 years ago he was officially diagnosed with Tourette Syndrome (TS)—a neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people, or an estimated 20,000 school-age children in New Jersey today.

Accepting the diagnosis wasn’t easy at first for Kyle and his family but, over the summer, he attended the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) Team Up with Tim Howard event at Rutgers and it changed his outlook on TS.

“Prior to this event, Kyle had never met other children his age who also have Tourette,” said his mother, Christina Swords. “It was an incredibly powerful experience for him to see so many other people, including [U.S. Men’s National Team Goalkeeper] Tim Howard, who share his condition. For the first time, having TS felt special to Kyle, and even a little bit ‘cool.’”

So, Kyle and his family decided it was time to educate their community about TS.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

“People are often wary of behaviors they don’t understand and as such, we felt that a great way to support Kyle would be to bring awareness to the school about his condition,” said Christina.

The Swords’s reached out to NJCTS Education Outreach Coordinator Gina Maria Jones to schedule a Youth Advocate Presentation at Kyle’s school. With the help of NJCTS Youth Advocate Mike Hayden, Kyle educated more than 150 4th- and 5th-graders at Hilldale Elementary School about TS and about treating others with respect. Kyle bravely addressed the audience and answered some questions about his experience with TS.

Kyle stood proud after the presentation, knowing he had the support and understanding of his teachers and classmates.

“I’m not so worried about my tics anymore,” said Kyle. “Everyone understands that it’s just my TS.” If there is one thing Kyle wants people to know, it’s that “Kids with TS can do anything that kids without TS can do.”

Kyle is also serving on the Youth Committee of NJ Walks for TS at Mendham coming up on Saturday, November 14. Youth Committee members serve as local examples of individuals living successfully with TS—they form teams, fund-raise, and inspire others to join them for a day of awareness and advocacy on behalf of all individuals living with the challenges of TS.

NJ Walks for TS benefits the NJCTS Education Outreach Program, providing in-service trainings and Youth Advocate presentations to schools and hospitals across the state. The program is making it possible for NJCTS to provide the latest information to help professionals identify, diagnose and manage TS and its associated disorders.

“As a family, our goal is to spread awareness of TS into our community,” said Christina. “We want to give back and support other families in the community in any way possible.”

NJ Walks for TS at Mendham is set for Saturday, Nov. 14th at Mendham Borough Park at the intersection of Mountain and Park Avenues. The event is rain or shine and check-in will begin at 8 a.m. For more information about the event, or to learn more about Tourette Syndrome, visit www.njcts.org.