YOU can help fund the NJCTS Tim Howard Leadership Academy!

Our friend Esther Howard (Tim’s mother!) has started a crowdfunding campaign on behalf of the NJCTS Tim Howard Leadership Academy. She needs our help to meet the goal. Let’s do our part by copying, pasting and sharing this link in e-mail, on Facebook, Twitter and Instagram. #GoFundMe

About the NJCTS Tim Howard Leadership Academy

The NJCTS Tim Howard 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. 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 TS!
  • Being a part of large- and small-group discussions with other teens and young adults with TS.
  • Participating in a variety of recreational activities.
  • Forming friendships and connections with other participants.
  • Meeting successful young adults who will serve as coaches.

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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What’s A Tic? Part 2 — Tic Classifications

What Are Tics

There are different classifications for tics, motor vs. vocal (Do you do it with you muscles or with your voice?) and simple vs. complex (How many muscles groups are involved in the movement?) As I said in part 1 of this 3-part series, there are all different kinds of tics, so many that there isn’t a definitive list of what can be a tic and what can’t. Why? Because every person’s body and brain is different. This means the tics his brain comes up with will be different from those of his neighbor with tics.

I created this table based on information from Mayo ClinicTouretteSyndrome.net, the National Institute of Neurological Disorders and StrokeTSA-USA (one of the leading support groups for individuals with Tourettes in the United States), and my own personal experience:

Common Tics

The tics listed here are some of the more common tics found in people with Tourette. My first tic was blinking, which was then followed by throat clearing, Squeaking, and my lip touching tic. My tics showed up as many tics do. Rapid, repetitive blinking is seems to be considered the most common first tic that shows up in children with Tourette Syndrome or tic disorders.

There are more extreme versions of tics that can be found in more severe cases, however. Probably the most popular one is Coprolalia, or the infamous swearing tic, where individuals who suffer from this particular tic can blurt out socially and culturally inappropriate words and phrases. There are a few things to know about Coprolalia, however:

  1. Coprolalia is found in only 10% of people with Tourettes, according to Live Science’s article, “Why Does Tourette’s Make People Curse Uncontrollably?” (I’ve heard 5%-15% from other sources as well.)
  2. Live Science also says that Coprolalia is said to be caused by some form of neurological damage, although we’re not sure why yet. It can also be found in individuals with
  3. The individuals who do suffer from this disorder don’t do it for attention or fun. In fact, it can be highly embarrassing when it does occur, and as with other tics, must be treated with care and kindness.

Because Tourette Syndrome (and tic disorders) are on a spectrum, the severity of tics will differ in individuals. My Tourettes is fairly mild so my tics are generally manageable with good diet, exercise and self-taught management techniques. There are some individuals, however, who have symptoms so severe they interfere with safety and health, such as this young man here:

Medical Miracle Tourettes

What’s A Tic? Part 1 — Definitions

What Are TicsOne of the most common questions I get after telling someone I have Tourette Syndrome is, “Wait, so like, what are your tics?” I think this question is harder to answer than actually telling people I have Tourettes. It feels like I’ve just told them, “I do weird things,” and then it feels like they ask, “So what weird things do you do?”

It can be intimidating to tell people that I have vocal and physical habits that “deviate” from what’s considered normal. Unfortunately, thanks to mass media, many people assume I’m going to confess my great love of cussing (Because we’re all just dying to break out in a string of cuss words in public for fun, right?), so it surprises people often when I explain my tics. They’re not what people think.

“Well, I blink, making squeaking sounds, rub my thumb on my lip, and tense up my muscles, to name my most common ones,” I tell them. “I have more, but they only come out when I’m really stressed.” Most often, the response is a blank stare, followed by, “So those are tics? I didn’t think those could be tics. I thought you cussed a lot.”

So What is a Tic?

Having tics is the defining symptom for having Tourette Syndrome, its less severe sibling, Chronic Tic Disorders, or other disorders such as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). They can also show up after a severe injury to the brain, such as one might sustain in a bad car accident, or as a side effect from certain medications, according to NHS England.

Pretty much anything can be a tic. If your body can do it, it can be a tic. WebMD’s article, “Tic Disorders and Twitches,” defines tics as,

“…spasm-like movements of particular muscles…These short-lasting sudden movements (motor tics) or uttered sounds (vocal tics) occur suddenly during what is otherwise normal behavior. Tics are often repetitive, with numerous successive occurrences of the same action. For instance, someone with a tic might blink his eyes multiple times or twitch her nose repeatedly.”

KidsHealth.org’s article, “Tics,” defines a tic as,

“…a sudden, repetitive movement or sound that can be difficult to control.”

Healthline’s article, “Transient Tic Disorder,” describes tics as,

“A tic is an abrupt, uncontrollable movement or sound that does not relate to a person’s normal gestures.”

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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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.

Fighting fear

I took Kane and Kenzi to a carnival last night at the school where his father and I graduated from. Kane was excited all day to go. When we got there and he saw the amount of people, he began to panic. He wouldn’t play any games, go in any bouncy houses or leave my side. He began to have a panic attack in the gym when he noticed a lady watching him have a tic. I tried to encourage him to look beyond all the people and have a good time, he tried but couldn’t do it. Watching him like that broke my heart!

Below are 8 Steps for Helping Your Child Overcome a Fear, by Kate Kelly of Understood.org:

Fears are a normal part of childhood—and so is learning to overcome them. But kids with learning and attention issues may have more fears than other kids do. They may worry about failing at school, about not fitting in with other kids, about what the future holds for them or about problems that relate to their specific issues.

Kids with learning and attention issues may also have more trouble overcoming their fears and need extra support to do it. But as a parent, there’s a lot you can do to help your child get past her fears. Here’s a step-by-step plan:

  1. Be a good listener. Ask your child to tell you exactly why they are afraid. Putting their emotions in words makes them more manageable.
  2. Take the fear seriously. Saying, “That’s silly” won’t convince your child the’ll get into college. But it may make them reluctant to open up.
  3. Don’t let your child just avoid what they fear. It may seem easier, but it just reinforces their fear and suggests they can’t master it.
  4. Send the message that they can overcome this fear. Tell them it’s OK to be afraid, but they’ll get through this and you’ll help.
  5. Ask your child what might help. Brainstorm ideas. If they are afraid of attending a party, perhaps they can go with a group of friends.
  6. Help your child take small steps. They might practice for a sleepover by spending a night in their sibling’s room or the living room.
  7. Make contingency plans. Brainstorm solutions: “If I get lost on the field trip, I’ll text my travel buddy. Or I’ll find a museum guard.”
  8. Let your child know you’re proud. When they face—and survive—something they feared, they’ll gain confidence that they can handle other fears, too.

Exercise-induced anxiety

Exercise Induced Anxiety AttacksWhile researching for another article, I happened upon a discussion thread about anxiety attacks and exercise. While science has shown that exercise generally lowers anxiety by producing endorphins in the brain, a number of individuals stated that as much as they want to exercise, doing so induces anxiety attacks for them. Obviously, this is a problem. We need to exercise for health, as well as to lower our stress, but how can we do that if the exercise itself produces anxiety attacks?

To be honest, I’ve noticed a similar problem sometimes when I exercise. It’s usually after I’ve been on the bike for about five minutes, right when I’ve gotten warmed up and have raised my resistance on whatever machine I’m on. My heart starts to pump even harder than I expected, and suddenly, distressing thoughts and images come to mind. Worst-case scenarios present themselves, and I feel a quick bout of near depression. My first instinct is to jump off the bike. If I started feeling that way while exercising, isn’t it best to separate myself from the situation?

It’s More Common than You Think

Summer Beretsky wrote about a similar experience in the article, “When Physical Exercise Feels Just Like A Panic Attack for Psychology Today. In it, she talks about how her doctors and friends told her over and over again how getting in shape and exercising regularly would help her lower her anxiety. There’s a Catch-22, however, she says, “exercising made me panic.” 

Livestrong.com’s article, “My Anxiety Gets Worse During Exercise,” also notes the struggle for some people who who have anxiety. The article notes that adults are often more aware of signs of anxiety attacks after they’ve had one, which means they’ll be on the lookout for anything that seems like an anxiety attack later on, even if it’s not.

Both articles note the same thing: Anxiety attacks and exercise share certain symptoms, the first being increased heart rate. This means faster breathing, as well as a rush of adrenaline. I’ve also read in online discussions that increased sweat production bothers some people. We can see how it’s easy to confuse the two. And honestly, if you’re trying to avoid anxiety attacks, the last thing you probably want to do is put yourself in a situation where it feels like you’re having another one.

So we know the symptoms match, and we know that it’s easy to confuse exercise and anxiety attack symptoms. The question is, what do we do about it?

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