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.

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.

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.

The 8 Things This Parent of a Child with Tourette Wants You to Know

As a parent of a child with Tourette Syndrome these 8 things are obvious. Here is my list of what I want folks to know:

  1. I have looked into ways of helping my child with tics and each kid is different. Saying it is sugar or video games is not the cause of the condition.
  2. Telling my child to stop or calm down does not help—it makes it worse.
  3. When you speak of his condition in front of him (just like any condition) he can still hear you!
  4. No, there is not a “fix it all pill.”
  5. The best medicine is for the person the child trusts to allow them to work one on one (without anyone interrupting us) each time a new tic comes on or when an existing one is worse than the last 6. Ignore it and let the parent handle it—please—and thanks!
  6. Usually the best medicine in reducing the tics is physical play—whether it is cleaning, chores, fixing something, being given a challenging puzzle, helping a kid who is not as intelligent because YES most all kids with Tourette’s are also highly intelligent.

To add to the above, here are some things that would be helpful to hear to assist the parent/child:

  1. “I understand you need time, let me leave you all be. If you need assistance, please let me know how/what I can do to help.”
  2. “Is there anything the child has or a place the child can go that calms them down to help release the tics? If so let me establish a place in public forums for this to happen.”
  3. “I am aware that the tics will change from day to day depending on various ways each child’s mind works—that is the whole reason each is different is due to the brain waves in each human mind working differently. No two stars are alike, no two snowflakes, and no two brains will ever be the same…ever and yet it is refreshing and scary all at the same time—same with death…no two deaths are the same and it is impossible to predict.”

Here is what would be helpful to reduce the amount of work I have to put into each public arena (i.e. school):

  1. Mandatory conference that all school staff attends—especially nurses or aide givers in the school should know how to handle a child with tics.
  2. Areas where a child can go with any neurological or physical disability where they can “let loose” and get their mind clear however they need.
  3. Natural examples of how the mind can heal itself from anything it is thinking.

Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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A plea to all parents of special needs kids

EDITOR’S NOTE: This blog entry was originally written to parents in Delaware, but the general theme of it applies to parents everywhere!

When I started this blog journey by telling my son’s special education story from a Delaware Charter school, I promised I had no political agenda.  That has changed.  The only way things can change for these kids is through legislation and hammering the points home to those who need to listen the most.

I am not running for any type of office, but I believe new legislation needs to be passed so children with special needs and disabilities have more rights in the state of Delaware.  I have talked to many parents from different states, and when they hear about the types of things that go on in Delaware in terms of special education, they are shocked.

All special needs parents need to stand united.  We need to stand up to the schools and let them know they are not doing the best they can.  Some teachers do, some special education specialists do, but not nearly enough.  No one knows our children better than we do.  So why must we fight so hard to get our children what they deserve?  Why do we have to go to endless meetings and fight for even the most basic of accommodations?  Is it a funding issue?  Is it that the schools are so arrogant to truly believe they know what is best for OUR children?

Things need to change, and they need to change as soon as possible.  I go to a support group for special needs parents.  Tonight was our last meeting until September, but I know we will all be there to support each other over the summer.  Every town should have one of these groups if they don’t already.  It has helped me, and I know it has helped others.  The biggest thing for these types of groups is confidentiality.  I promised everyone I wouldn’t blog about their experiences!

As parents, we see what our children go through.  We see their daily struggles at school and home.  We know immediately when they need us more than the school.  We know why they do certain things that the schools just don’t seem to understand.  We understand that all their behavior is not intentional.  What we don’t know is why the schools don’t want to get this.

The Delaware Department of Education is having their monthly school board meeting tomorrow in Dover at 1pm in the Townshend Building, across from the new library.  On their agenda is to go over the IDEA Annual Performance Report.  I am very interested to hear what is in this report.  I can guarantee not every single special education matter is in that report.

Many parents who have gone beyond the DOE know this.  The DOE knows this.  So what happens to all of those children who are not accounted for in that report?  According to the DOE website, there are very few due process hearings in Delaware.  Those that don’t go to a due process tend to get resolved through a mediation of some sort.

I spent hours last night going through these reports from the Delaware DOE on their website:  Continue reading

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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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).

REGISTER FOR THIS WEBINAR »

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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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52 Weeks of TS: Week 25

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

This week could be one of the highest stress, anxiety-filled weeks yet this year. My father had been gone for almost 12 years and my mother just over four years. Losing a loved one is never easy, and I’m not sure you really ever get over it — especially losing them at such an early age. I lost both my parent before I even reached 35 years old, and they were both in their early 50s when they passed.

Since I spent most of my life in the TS closet, I never really spoke to them about it. If TS is in fact hereditary, I’m not sure which side of the family it came from, and now I can’t ask them to see if they would have a clue. My parents divorced when I was very young, but both were remarried and had kids. I guess I will get the answer to my question if any of my nieces or nephews ever starts ticcing, but I would not wish that on any of them.

I don’t wish this mysterious disorder on anyone, but at least if one of my nieces, or nephews were ever diagnosed with TS, they would have me there for them. Someone to show them it’s just another thing; it’s not a death sentence. It’s just something we deal with, and move on with, day to day. That’s what I do.

As for kids and myself, that’s not going to happen. I did want kids at one point in my life, but my husband doesn’t, and now I just feel too old anyway. If my husband ever did want to have kids, I would want to use his swimmers anyway, not mine. I would not want to chance my kid having TS. What if it was worse than mine is. I just couldn’t handle the thought knowing I did that to this person.

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