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.

What’s A Tic? Part 3 — Treatment & Management

What Are Tics

There are multiple forms of treatment and management for individuals with tics:

  1. Medication – I’ve never needed medication myself, but for some people, medication is what really helps them get their lives back on track when the tics are too much to handle, and there’s nothing shameful about it.
  2. Diet – While I don’t believe diet will cure true Tourettes, I know that my tics get a lot worse when I don’t eat healthy food. The way I see it, your brain will only function as well as the fuel you put into it.
  3. Exercise – Because many tics are often related to anxiety, exercise is a great way to both lower anxiety and lower tics. After really strenuous workouts, I can often go 10 to 15 minutes where I don’t even feel the need to tic. (Heaven!)
  4. Behavioral Therapy – According to Tourettes Action in the UK’s article, “Behavior therapies and Tourette Syndrome,” behavior  therapy is being used to help some individuals with tics by helping them learn to be mindful of what their brains and bodies are doing.
  5. Deep Brain Stimulation – This is the type of treatment talked about in the video clip posted above, only used for the most severe cases, as it’s still considered experimental.

One of the most important parts of treating and managing tics is simply the diagnosis. Once you know you’re dealing with tics, it can be easier to pinpoint and manage with the help of a primary care manager, family, and friends. It’s also important to remember that a diagnosis of a disorder with tics isn’t the end of the world; we must remember that under the tics is still the individual, and that person is a beautiful creation of God who’s simply struggling with the burdens of life like the rest of us.

Do you have any information on tics that you’d like to share? What about questions? I’d love to hear your comments and questions, so please post them in the Comment Box below. Also, don’t forget that if you sign up for my weekly newsletter, you’ll get extra resources on neurological disorders, as well as a gift in thanks for signing up. Thanks for reading!

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!

Not being able to fix your child’s ADHD doesn’t make you a bad parent

I think this is why it bothers me so much when I hear people harp on parents of children with ADHD (or any neurological disorder for that matter) about not using a particular method that’s sure to “cure” a child of his disorder. And there are lots of promised “cures” out there. Here are just a few of them:

The Feingold Diet

Diet – In the 1960’s, Dr. Feingold began to tout the idea that many behavioral problems in people with ADHD can be linked to food sensitivities. The “Feingold Diet” eliminates artificial food coloring, artificial flavoring, Aspartame, and artificial preservatives BHA, BHT, TBHQ.

The results have been mixed. ADDitude Magazine, one of the biggest parental authorities on ADHD, says in its article, “Is the Feingold Diet an ADHD Cure?” that while some people have proven to be sensitive to certain food additives, such as red dye, there hasn’t been enough conclusive evidence to pronounce this as a surefire way to fix the disorder.

WebMD’s article, “Attention Deficit Hyperactivity Disorder: Alternative Treatments” says,

With elimination diets for ADHD, parents try eliminating certain foods from their child’s diet if they believe these foods affect the child’s behavior negatively. However, some experts theorize that behavioral changes can be noted in children following an elimination diet simply because of the way parents interact with the child while on the special diet.

I have met children with ADHD who are sensitive to certain foods, and eliminating these foods from their diets help a great deal. These foods aren’t always the Feingold foods, however. Often, they’re individual to the child. In general, however, eliminating these foods doesn’t “fix” the entire disorder. It’s just one step toward making it more manageable.

Essential Oils

The idea behind using essential oils to treat ADHD is explained by adlMD.com. According to the company, essential oils are used to stimulate the “parts of the body that are not functioning properly, restoring the body to its natural state.” It goes on to say that some particular chemicals present in essential oils might react with the nervous or muscular system to “encourage healing.”

Brain Balance Achievement Centers article, “Essential Oils for ADHD,” says that there are some essential oils that have shown some success in aromatherapy by helping calm children with ADHD, such as Ylang ylang, Vetiver, Frankincense, and Patchouli. (I’ve also read that simpler oils such as citrus, lavender, and mint can help with anxiety relief.)

Natural Interactions

The organization does encourage caution, however, when using any essential oils, particularly because there hasn’t been much research done on them, they aren’t regulated by the FDA, and they can cause skin irritations sometimes. Finally, Brain Balance says, “If used carefully you may very well find that essential oils enhance focus in children with ADHD and attention issues. Essential oils are not a cure, but it seems they can be used to calm your child and may help to improve concentration.”

I personally believe more research needs to be done on the use of essential oils.

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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.

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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Tourette’s & Pregnancy: Trimester 3, Part 2

This post is all about the “secret weapons” I am using to combat the anxiety and everything else that comes with being pregnant and having Tourette Syndrome:

Exercise

I was thrilled to tell my physical therapist yesterday that I got a stationary bike for my house, the kind with the back support. An older patient chuckled and said I wouldn’t have to worry about using that after my little one comes. I smiled back to be polite, as I know he meant well, but deep down, I have to admit that it frustrated me.

People who don’t have chronic anxiety or tics often don’t understand why exercise is so important to me.

I know I shared this picture in my last post, but I'm just so stinkin' excited about my bike and balance ball!

I’m so stinkin’ excited about my bike and balance ball! To them, it might not mean a whole lot to stop exercising, but for me, it’s not just an activity – it’s a necessity. I’ve had to cancel at least half of my exercise plans during the second two trimesters because of back problems, nausea, and all the other fun things that pregnancy brings, but I could always tell when I’d cancelled too often. My tics would jump, and so would my stress.

Because simply getting to the gym can be a hassle (and will be even more after Jelly Bean arrives), I decided I needed to tackle my problem from another direction. I researched exercise bikes and then purchased a simple, somewhat inexpensive one for my home, along with a balance ball. Those, combined with the small sets of weights I already owned, made up my new home gym. It was pricey, but to me, keeping my stress levels down and my health up is worth it. That way, after Jelly Bean comes, I’ll be ready for some quick rounds of exercise whenever the time presents itself.

I’m not saying I’ll get in an hour every day, but from the first day I’m allowed back on that bike, I will be. Exercise will be a priority because I’m making it one. The only way I’m going to keep myself healthy and at peace enough to properly take care of my family is if I’m taking care of my own anxiety levels first.

Now about my diet …

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Tourette’s & Pregnancy: Trimester 3, Part 1

Fridays are always celebration days because they mean we’re another week closer to Jelly Bean’s arrival, and today marks our victory of 33 weeks! Between starting the nursery (which mean completely rearranging my house…which meant my husband completely rearranging the house), physical therapy for my back, a bit of substitute teaching, and a lot of writing, we’ve been pretty busy around here. I thought I’d take a few minutes and give you a report on how the Tourettes has been doing for Trimester 3.

(If you didn’t catch them the first time, here are my reports for Trimester 1 and Trimester 2.)

I’ll start off by saying that my tics have been noticeably more active this trimester, definitely more so than they were in the first two trimesters. I think this is for multiple reasons:

  • I had absolutely no energy with which to tic in Trimester 1.
  • I was still getting my energy back in Trimester 2.
  • I have a lot of great things going on in the coming weeks, but even good stress is still stress. And Stress=Tics.
  • Admittedly, my emotions are somewhat less balanced this trimester.

Now about that anxiety …

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