I Don’t Know

As parents how many times a day do we hear, “I don’t know”?

“I don’t know why I don’t write down my assignments.”

“I don’t know why I didn’t turn in my assignment.”

“I don’t know where I put my water bottles.”

“I don’t know where I put my assignment.”

If I had a penny for each “I don’t know,” I would be rich. At first I took it as if my child wasn’t trying hard enough, so my response, my irritated response would always be some version of, “why don’t you know?”  I then became the teacher in Charlie Brown, “Wha, wha, wha, wha, wha!”  This did nothing for him or for me.  I had read all of the books, attended the webinars, but when you hear the, “I don’t know…” for the ten thousandth time, for me it wasn’t that he could not remember what he could not find, it was, it “is” the fear that engulfs me  for my son’s future.  This seemingly small, “I don’t know,” is bigger than those word three words. As a parent with a child with TS, most times things are not “just” small.

So, I made a choice to change how I operate, how I approach his “I don’t knows.”  It was time to put what I learned into practice.  I would love to say, the frustration is gone, but as quickly as it comes to mind, it disappears and we figure out what broke down.  My son and I say the following to each other all the time, “The definition of insanity is to keep ‘consciously’ doing the same thing over and over expecting the result we really desire.”  So the key is to find where the breakdown is.  The “fool’s gold” in all of this is that it is easy.  We have come up with systems that work for a while, and stop working.  The investigation begins, why is it no longer working?  Where is the breakdown?  What happened?  Did it ever work, or was that fool’s gold?  However, the light is when you and your child/teen finally find an answer to just one of the, “I don’t knows”, and it sticks and works, is worth it all.

Now, when it comes to the “Teen” “I don’t knows”  I still don’t know what to do about that!!!

 

Neeta Elementary School Principal named 2015 NJCTS Educator of the Year

Nominated by Jen Heicklen and her daughters, Anna and Ava, Carole Ramage was chosen as this year’s winner by the NJ Center for Tourette Syndrome

Neeta Elementary School Principal Carol Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

Neeta Elementary School Principal Carole Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

Principal Carole Ramage of Neeta Elementary School in Medford Lakes, NJ continues to be a source of support and compassion in Anna and Ava Heicklen’s lives. She has taken the girls under her wing, going above and beyond her responsibilities as a school administrator.

Ramage comforted Anna and her mother, Jen, early in Anna’s 3rd grade school year when she noticed Anna’s hesitation to enter school. Often, Ramage would approach the car and ask Anna to be her helper, easing Anna into her morning routine.

In fifth grade, Anna’s tics were becoming more noticeable to her peers and Ramage encouraged her to make a presentation to her class about Tourette Syndrome (TS). The presentation changed Anna’s life and she now feels comfortable knowing that everyone knows about TS and supports her.

Anna Heicklen now enters the school with the confidence Ramage helped her find within herself. For that Principal Ramage was nominated by Jen Heicklen to be the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Educator of the Year. The Heicklen family recognized Ramage on the last day of school and the award was presented to her at the NJ Walks for TS at Medford Lakes on September 20. NJCTS annually recognizes teachers, guidance counselors, administrators, and other education professionals who are making a difference in the lives of a student with TS—an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 school-age children.

“If it weren’t for Mrs. Ramage advocating for my child, she would not have presented to her class,” said Heicklen. “The presentation changed my daughter’s life. From that day on she has not been upset one day about attending school. She feels comfortable. Without Mrs. Ramageʼs influence on our family, this would not have happened.”

Anna’s younger sister Ava, who also has TS, was encouraged by Ramage to make a presentation to her third grade class. Ramage continues to update the Heicklen family with how well Anna and Ava are doing in school.

“She would send me texts during the day letting me know that Ava was doing well,” said Heicklen. “This information allowed me to relax and worry less about my kids. It is time for this unsung hero to be acknowledged and rewarded for her dedication to the kids for her selfless acts.”

NJCTS has granted Educator of the Year awards since 2001. More information about the Educator of the Year award is available by calling 908-575-7350 or visiting www.njcts.org.

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.

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.

52 Weeks of TS: Week 46

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 6 weeks remaining in this series, there’s a chance you missed one 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.

I’m tired!! I have to say, I think this has been one of the longest, most exhausting weeks that I’ve had in a while. I had a freelance job doing hair and makeup for a high school musical, which I do about 5 times a year, but this one was different. I usually design the show three weeks in advance, but I missed two weeks. I ended up designing the show on Monday, and we opened on Wednesday. This just made for a very stressful week, not anxiety, but a lot of stress.

Just like anxiety, stress triggers my tics, so it’s been a very ticcy week. I feel as if my brain has been bouncing around inside my skull all week. My neck tic has been bad all week, and I’ve been taking aspirin for the constant headache that does not seem to go away.

Usually, I try not to suppress my tics in my everyday life, but while I’m working in the high school all bets are off. I just feel as if I have to suppress them.

I guess it has to do with my own high school experience. There was always constant mocking and my fellow students were always making fun of me. Once I walk back into a school, it tends to bring me back to that time and place. It’s a cruel world we live in. I try not to suppress my tics in many adult situations, but when you’re dealing with uneducated ignorance and immaturity of high school kids, it can be hard to explain. How do you teach someone something who thinks that they know everything?

A person with Tourette Syndrome has to have thick skin. It’s not something we are born with, but we have to grow it. I thought about this a lot this week, and I’ve realized that we have been supplied the greatest weapon for our fight to educate — our mouth. The more we open our mouths, the thicker our skin becomes and the stronger we become, but it can be a hard thing to do.

When we are kids, we are scared, nervous and possibly beaten down by ignorance. It can take a lot for those shy kids to battle their own fears and demons, to turn around and speak about the very thing that has brought them down. Look at me. It took me about 15 years to start my battle against ignorance, and I still deal with fear. Despite the fear, I still try to fight the fight and continue to educate people.

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Self-control is very difficult with Impulse Control Disorder

There are things my son says and does that are out of his control. I only wish more people would be understanding of this, especially people that he is around almost daily. Not only is he living with Tourette Syndrome, he is also struggling with other underlying disorders, one of which is Impulse Control Disorder.

Within his impulse control, he may say things at the wrong time or make a joke at the wrong time. Inside his mind, these are totally acceptable. He may call someone a name — “stupid” or “idiot” — and not realize that it is going to hurt their feelings. He may burst out with anger saying things that are really offensive toward those he loves and later apologize because he realized his actions have hurt someone.

He has a lot of anger built up every day, and he has no idea how to deal with it other than letting it out. He has gotten so much better at releasing it through stress exercise; however, nobody is perfect. So I ask that, if anyone who is around a child like Kane hears this, or sees the rage, please understand nobody but that child knows what is going on inside.

I love my little stinker to the moon and back! 

Why one size doesn’t fit all when it comes to ADHD

There’s often a pattern when it comes to the many different treatments of ADHD. Each one shows improvement in some children, but not in all. Each treatment needs to be carefully regulated by parents and pediatricians to make sure none of the treatments overlap in a way that could be dangerous to the child. Some of these treatments target specific symptoms of ADHD, but not the others.

These precautions, in conjunction with the different forms of ADHD, mean one thing: there is no one “cure” for ADHD because there is no one expression of ADHD. Each child’s treatment will depend on all sorts of factors such as:

  • Type of ADHD
  • Health
  • Allergies
  • Learning Style
  • Other Disabilities
  • Safety at Home
  • Good Nutrition

And this list is by no means exclusive. My point is that it’s not fair for parents to be judged for not trying a new “miracle cure.” The children I’ve worked with in different schools and in tutoring generally thrive under multiple sources of assistance. Some of the management strategies may surprise you, too. Most benefit from a mix of medication, a balanced diet, and these non-medical treatment sources:

  • Exercise – In the article, “Taking Away Recess Bad for ADHD Kids, Experts Say,” Thomas Lenz, an associate pharmacy professor at Creighton University in Omaha, Nebraska,  says that exercise and ADHD medications act on the brain in very similar ways. In addition, according to NOVA’s article, “The Science of Smart: A Surprising Way To Improve Executive Function,” exercise is one of the best ways to improve executive function struggles, a symptom most children with ADHD struggle with.
  • An Organized Home – Children with ADHD often struggle to pick up basic organizational skills and habits such as having one spot for homework or knowing how to follow a basic evening routine. ADDitude Magazine’s article, “Help Your ADHD Child Organize Homework,” stresses that it’s important for parents to work with their children to develop healthy organizational skills as they grow so they’re more prepared to carry those skills into the world with them.
  • Cognitive Behavioral Therapy (CBT) – CBT is often an effective treatment for individuals with OCD, but experts are finding that it can be helpful for children with ADHD as well. U.S. News Health’s article,  “Cognitive Behavioral Therapy Can Help With ADHD,” says, “CBT for children with ADHD is aimed largely at improving their behavior through praise and rewards that motivate them to calm down enough to cope with school or other challenges.” The article states that while CBT won’t cure ADHD, it helps children learn thinking and self-management skills. If mastered, these skills can last far beyond any medication.

Different Kids, Different Needs

Parenting a child with ADHD is not an easy task by any means. It’s time consuming all the time, and it takes a lot of trial and error. A certain diet and medication that works for one child will probably not work for the next. And on top of that, children’s dosages and treatments will need to constantly change as their bodies and brains grow.

If you’re the parent of a child with ADHD, don’t let people guilt you into only one form of management for your child. No matter how much they promise you “just need this one treatment,” odds are that your child will have his or her own needs that are mixed and multifaceted. The best you can do is try, and when one treatment doesn’t work, don’t consider yourself a failure. Simply move on to the next and know that you’re doing your best. Your attempts to meet your children’s needs will encourage his or her teachers and other supporting adults to do the same, and as a team, you’re giving your kiddo the best chance he’s got. And isn’t that what every parent wants?

Do you have experience with ADHD management? What are you thoughts on the issue? What was successful for your, or what wasn’t? Please share your thoughts in the Comment Box below. And don’t forget, you can sign up for my newsletter for extra resources on neurological disorders, education, and spiritual encouragement. As always, thanks for reading!

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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52 Weeks of TS: Week 43

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 9 weeks remaining in this series, there’s a chance you missed one 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.

This week has been a bit of a stressful week. Now remember there is a difference between stress and anxiety. My anxiety is still at an all-time low, but we are always going to deal with the everyday stress that life brings us. I’ve been planning a big book release/signing party for my book “A Day in the Life of Tourette Syndrome.” This event is going to be a big event, with approximately 150 people, and just finalizing all the plans and making sure there are enough books for everyone is stressing me out a bit. I think the excitement of the situation is also adding to the stress factor.

It has been an interesting week looking into myself and my anxiety. I know that different medications and supplements work differently on different people, but I do have to say, I’m really believing that the fish oil has helped with the anxiety. The anxiety plagued me 24/7, but all of a sudden, it’s gone. My unwanted neighbor, anxiety, has been evicted.

I do wonder if it is the fish oil, or maybe even the waxing and waning of TS, but I’m going to go with the fish oil. I have been on quite a few medications for the anxiety, including Klonopin, for the past six years. This week I actually reached a point of wanting to cut out the Klonopin. I have been on Klonopin for the past six years, with no real relief at all.

Upping the dosage, lowering the dosage, changing the times of when I took the pill, and nothing helped. The anxiety was still there, but two weeks of taking fish oil, I miraculously notice a difference. I’m going to see my doctor next week and talk to him about getting off the Klonopin permanently, or at least for the time being.

The anxiety might be gone, but the tics and the OCD are still there.

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No single fix for ADHD

No Single Fix for ADHD

One of the phrases that grates on me the most is, “if you would only,” when it comes to parenting children with disorders, particularly. Attention Deficit Hyperactive Disorder is one of the most common neurobehavioral disorders in the United States, so there are no lack of opinions on how to “fix” it. Healthline’s article, “ADHD by the Numbers: Facts, Statistics, and You,” says that as of September 2014, there were 6.4 million American children, ages 4-17, who have been diagnosed with ADHD.

A lot of people are theorizing why there’s been such a rise in the numbers within the last few decades. While I personally believe the numbers reflect multiple modern diet, exercise, education, and lifestyle trends, I’m not going to get into that today. As an educator, my job isn’t to research the scientific reasons for children’s struggle; my job is to address them here and now. And believe me, that’s enough of a job on its own.

Addressing ADHD is rarely an easy task. ADHD doesn’t mean a child is “bad,” but it does mean his problems will be unique to him. While there are symptoms that flag ADHD, such as the inability to focus on one thing at a time, emotional regulation struggles, sudden outbursts, and problems with executive function, no two children have the exact same version of the disorder. Unlike treating the flu, ADHD is complex because the brain is complex.

WebMD’s article, “Types of ADHD: Making the Diagnosis,” discusses the different kinds of ADHD. The Diagnostic and Statistical Manual, the American Psychiatric Association has grouped ADHD types into three main groups:

  1. Combined – The child struggles with both hyperactivity and inattention
  2. Predominantly Inattentive – The child struggles most with the inability to focus on one thing at a time (commonly known as ADD: Attention Deficit Disorder)
  3. Predominantly Hyperactive-Impulsive – The child struggles most with hyperactivity and impulsiveness, but not as much with the inattentive portion.

The DSM has at least 9 symptoms for the part of the disorder dealing with inattention and 9 more for the part dealing with hyperactivity and impulsiveness. In order for the child to qualify for at that portion of the disorder, she needs to qualify for at least 6 out of the 9 symptoms.

Understandably, this means there are many children who might have 5 out of the 9, which by no means, indicates that they don’t struggle. They just don’t struggle enough for the DSM’s diagnostic requirements. If you do the math, this means there are countless versions of ADHD that can occur. And of course, this is all theoretical because it doesn’t bring into account environmental factors either, such birth complications, a stressful or abusive home environment, food accessibility, or the presence of other comorbid disorders.