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.

Free range me

Well, my kid made it to Arizona safely. Shockingly enough, I didn’t spend the entire vacation without him in an anxious mess. Sure, I breathed a sigh of relief when I knew his plane landed safely, but that was about it. The few days without Stink included lots of cherished time with Pip and her dad.

We all stayed up late a few times, curled up on the green couches with books akin to those fat fluffy seals sunning themselves on rocks at the pier. (I’m currently reading Anne Lammot’s Grace, Eventually and just laughing out loud. That woman is brilliant and about as neurotic as I am. Though I have better hair. Sorry, Anne.)

The day after he left, I had tea with Tuskany. While Pip and her daughter swapped books in the next room, Tuskany quipped that I had some free-range parent characteristics. I had to laugh, because in many ways, she’s not wrong. I didn’t check Stink’s luggage. (For all I know, he could have loaded up that suitcase with Twizzlers, pens and porn.)

I didn’t even know who is parent chaperone was until I arrived at the airport that morning, groggy and disheveled from lack of coffee and sleep. In stealing kisses from my man-child and reminding him to brush his teeth at least once on the three-day trip, I forgot to ask for the chaperone’s phone number. I reckoned to myself that if he needed to get in touch with me, he could take my advice and ask another parent to use their phone.

I’m not sure how you would handle this. I do know that Tuskany would never operate in such a manner. She is truly one of the best parents I know. She has this responsible thing down pat, and her daughter, well, she’s a genius. Even Stink thinks so. (After Disneyland a few weeks back, he turned to me and said, “Mom, Nadia is the smartest girl I ever met. And she’s only in THIRD grade. Um… I think she’s smarter than me!” To which I responded, “She is smarter than you, kid!”).

I’m certain that this wunder girl’s mother would not only be sure that her daughter had her own phone, she would not be on a plane with a bunch of rag-tag public school kids going on an excavation. (I’d tell you the places they went, but I lost the itinerary before we even got to the airport. Something with rocks and deserts and Indian caves with the name Canyon tied onto the end for the tourists.)

The thing is, though, I just knew he’d be fine. He was surrounded by teachers and parents. (Some of the parents I even had cell phone numbers for and they sent me pics!) I just didn’t worry about it. Here’s one from someone who, thank God, was kind enough to show me how much Stink was enjoying the culture on Day 1.

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The dangers of Taurine on kids

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After speaking to a nutritionist today, I have decided to take Stink off the Taurine. Despite how well he is doing tic wise (see previous post) I was advised it can be very bad for kids. It acts as a stimulate and can greatly damage the heart. That scared me.

What is Taurine?

Taurine is an amino acid sold in supplements and available in energy drinks. Taurine also occurs naturally in the body and plays a key role in many biological processes, such as detoxification and regulation of nerve-cell activity. Although low levels of taurine have been linked to several conditions (including eye diseases and cardiovascular problems), research on the health benefits of taurine supplements is limited.

Taking Stink off Taurine Slowly

Rather than quit cold turkey, I’m going to take him down to one pill/day for a week, then every other day for a week, then one, then none.

Always Check with a Professional Before Using Supplements

Normally I don’t willy nilly medicate my kids, but I had read on many mom forums that Taurine was this miracle supplement and went for it. I won’t be doing that again.

For those who are praying type, I am asking for prayers that his tics continue to stay minimal and that the NAC and Magnesium Citrate were what was helping him and not the Taurine.

Here’s one supporting article on the dangers of Taurine for kids.

Until next time…

May God grant you the serenity to accept the tics you cannot change, change the tics you can, and have the wisdom to know the difference.

Follow me on Facebook and Twitter. I would love to connect with you. 

HolisTIC: Magnesium Citrate and Taurine

This post is dedicated to Veronica, who was sweet enough to write me a little note asking me where the heck I have been. She misses me! Hooray! I have missed this site, too. To be honest, I have been kind of a whirling dervish of house work, kids, trying to figure out employment, getting a new job, quitting because my boss was an 84-year old maniac who couldn’t stop screaming about my subject lines “Horseshxt! Superfulous Horsehixt!”, fretting over finances, attempting not to fret over finances and ultimately deciding that my priority for now is to be as present with my kids as possible given that we have a four-month summer coming up.

Yes, let me say that again. FOUR MONTHS.

Here is how I feel about that concept.

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Just kidding. It’s more like this.

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But that’s okay. I am going to make the most of it. I have finally decided to make my income by concentrating full-time on Ebay and freelance writing. Sounds like a weird mix, but it works.

Writing Clients

Blogging for a surrogacy company – GlobalIVF

Bloggin for a prescription discount company – SimpleRX

Ebay

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Here’s my store. I am figuring out the most efficient ways to list, sell and ship my items. The ultimate goal is less thrift store items and more New with Tag items purchased downtown. I figure if I buy the same item in bulk, I only have to list it once rather than taking a gazillion photos/day. Other than filling orders, I can spend my time taking care of my wee ones and working on my book marketing which leads me to my final two points:

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My word of the year: DISCIPLINE

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It has occurred to me recently that whining and complaining is not all that it’s cracked up to be. At some point in one’s life, it becomes necessary to actually do something about what they want changed. This realization didn’t happen for me with doobage and unicorn rainbows shooting out my arse at a yoga studio run by a guru named Spirit Chevrolet. It happened for me at a red light on my way home from Target.

I had been stewing and stewing all day about finding work and putting away Christmas decorations and making school lunches and “Why can’t I just get a break I am working so haaaard?” when a little voice came into my head with four words that pretty much changed everything. “Shut the hell up.”

“Excuse me?” I thought to myself. But I felt that same voice tugging at me. Call it God. Call it my inner voice. Call it an angel with an attitude. I don’t care. For that moment, I sat in my own truth — the truth that it was up to ME to do something different. I knew this already, but it wasn’t until that moment that I really knew.

For many  years, I wanted the tics to change.

I wanted people to change to make me feel better about my life.

Since those fantasies didn’t actually translate into real life for me, it was now time for me to change myself. A few excuses I had for whining, complaining and basically throwing a big boo boo tantrum for the past few months included,  but are not limited to:

  • I shouldn’t have to do all that social media stuff to get a job in this town. I’m a WRITER
  • My husband isn’t changing into a beacon of flexibility. Why should I become the poster child for responsibility?
  • My friends aren’t giving up wine. Why should I have to?
  • My kids aren’t worried about cleaning their room. Why should I clean mine?
  • I am too tired to exercise. I think I’ll just grow a spare tire and enjoy the wonders of armpit hair.

At the end of the day, I can either give my power to my husband, the tics, family obligations, my work, my kids or the dog, or I can give the power to me. Choosing me is kind of scary, because who the heck am I? Who the heck are you?

This question changes everything. It leads to destruction or transformation. It leads to failure or success. It leads to darkness or light. When we know who we are, we can be who we need to be. And when we are enough, no tic, person, place or thing can touch us. It’s not every day that I have this kind of epiphany, but between you, me and the street light, I’m glad I did.

Understanding depression in children

As a child or teen, did it bother you when people would comment “these are the best years of your life”?

For many children, this blanket statement is a stark contradiction from the reality they know. A bulk of people experience a childhood or adolescence that is not always filled with rosy or positive experiences.

Once considered impossible, today’s experts are aware that even young children sometimes suffer from depression. As a parent, it’s hard to acknowledge that your child might be suffering from this ailment. If you feel that a child is suffering from depression it’s important to understand the facts, signs, symptoms, and pointers to help a child cope.

Childhood Depression

The American Academy of Child and Adolescent Psychiatry now estimates that typically one in 20 children or teens are depressed. This is shocking when you consider that within every classroom is a high probability that at least one child in attendance is suffering from depression.

Depression is a real medical condition and should be treated accordingly. Many parents feel there is a stigma attached to a child if it is suspected that she suffers from depression. Unfortunately, this is an illness that they can’t just “snap out of” and requires attention.

“Depression is no more a result of ‘bad parenting’ than is diabetes or cancer,” says Dr. David Fassler, co-author of “Help Me, I’m Sad”: Recognizing, Treating and Preventing Childhood and Adolescent Depression. “All are real illnesses that require careful evaluation. The good news is that we can help most children and adolescents.”

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Sensory What-egration?: The 411 on Sensory Integration and Sensory Processing Dysfunction

The National Office of the Tourette Syndrome Foundation of Canada (TSFC) received several questions about sensory integration dysfunction (SID), a common co-occurring condition with TS.

Just last week, a parent asked a National Office staff member if SID was a “real thing.” The National Office staff member assured her that it is real, however there is some debate in the medical community about whether it is a stand alone condition or a symptom of other conditions. The concerned parent asked where she could go for help with treatment and diagnosis. If you are in the same position and what to learn more, please read on.

Below are some FAQs on sensory integration and sensory processing dysfunction.

What is sensory integration?

Sensory integration is using senses to understand the world around us, or “the organization of sensation for use.” It refers specifically, to the ability of the brain to filter and process incoming information from all the body’s senses or sensory systems.

What are sensory systems?

Sensory systems include touch, taste, smell, sight and hearing as well as “vestibular” or movement, and “proprioceptive,” which refers to the info you gain through receptors in your joints and muscles.

What is sensory integration dysfunction?

Each of the body’s sensory systems work together to ensure that a person can successfully interact with, and make sense of, the world around them. A problem or disruption in this process is called sensory processing dysfunction.

What causes it?

The cause is not entirely clear. It may include genetic, hereditary, environmental factors, but the exact cause continues to be studied. So far, scientists have had some success in linking structural and chemical imbalances in the brain to the body’s uncharacteristic or disproportionate response to sensory stimuli.

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52 Weeks of TS: Week 29

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

Oh to be back in New York City! Anxiety is here at full force, and OCD is crazy. What is it with this city? I’m here for a week, but I can’t wait to get back to Martha’s Vineyard. I think I need to move to a dessert island. The time I spent on Martha’s Vineyard was so relaxing, and now I’m trying to acclimate myself back to my New York state of mind. It’s hard. This whole week feels like a nonstop nightmare. I’m only here for a week, so I’m trying to get everything done that I need to. Work, doctor’s appointment, meeting, and the social events, it’s never ending.

I’m going to reflect a little on my last week’s entry, mainly my OCD’s. I complained about coming back to my house and it being in disarray. I know it was just me who thought it was in disarray, but it got me thinking. I have spent my whole life dealing with my OCD, but there are other people around me who have to deal with my craziness.

I give my husband a lot of credit to have the patience to deal with some of my weirdness. I look back and think, I have had quite a few different roommates in my adulthood, and I know they have all had to deal with my OCD. I feel rather bad for them, but I have to say, none of them have been too overwhelmed dealing with me.

Finally having some alone time this week gave me a lot of time to think. Even though I had a rather busy week it was nice to have some alone time to think. The only problem is, some of the thoughts that rolled through my mind were a little obscure.

One of my thoughts was that TS is a neurological disorder and animals have brains, is it possible for an animal to have TS or Parkinson’s? Animals get tumors, seizures and cancer like a human does, why not other things? What exactly would a dog look like if it had tic, or what would their OCD come out as? I guess it’s just one of those weird things that goes through my mind.

These strange mental journeys bring me to other places, too, the thought of the struggling countries all over the world. We in the United States have a pretty good medical institution where money is always being put into different medical studies in hopes to learn more. However, there are places all over the world where families struggle to feed their children or themselves and a medical system is close to nonexistent.

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What if my baby has Tourette?

What If My Baby Has TourettesWill my baby have Tourettes? It’s a question I’ve asked myself many times. I’ve also wondered if my anxiety and OCD tendencies will be passed down as well, which leads to the next question. So what if Jelly Bean does have my struggles? What then?

They’re not questions easily answered. To begin with, there’s the question of the heredity of Tourettes. Will my child have the same tics that I do? Will the tics be worse or better? What if it’s really severe Tourettes, the kind that draws rude stares and comments from complete strangers?

Tourettes and Heredity

So what really causes Tourettes? In short, researchers can’t identify one specific cause yet, but it’s not for lack of effort. They have discovered, however, that there are quite a few patterns in the way Tourettes reveals itself.

As to the likelihood, research shows that we honestly don’t know what causes Tourettes, but we do know that it seems to travel in families. MedicineNet’s article, “Tourette Syndrome: Is Tourette syndrome inherited?” states, “Evidence from twin and family studies suggests that Tourette syndrome is an inherited disorder.” The CDC article, “Tourette Syndrome: Risk Factors and Causes,” says that studies in genetics indicate that Tourettes is inherited.

This inheritance isn’t as simple as being double jointed or having a widow’s peak hairline. One possible cause for some cases of Tourettes comes from the SLITRK1 gene, according to the National Institutes of Health. It isn’t likely, however, that this mutation is the cause for the majority of Tourettes cases, as the article states there are too few people with Tourettes and this mutation to draw complete conclusions.

Another possible explanation for some cases, according to Medical News Today’s article, “Rare genetic mutation confirmed as a cause of Tourette Syndrome,” is another genetic mutation, this time having to do with the disrupted production of histamine in the brain. Again, this genetic mutation can’t account for all cases, however. Just possibly some.

The majority of Tourettes cases, however, seem to come from a combination of mutations and genetics that are passed down through families, as well as possible brain damage in some cases. Here are 3 statements from the CDC that sum up what we know about Tourettes. Continue reading

Ask Dr. Ticcy: Should I monitor my other son for signs of TS?

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

What are the odds of two boys in the same family having Tourette? Our eight-year-old was recently diagnosed with TS and now we are noticing a lot of the same signs in our six-year-old. It’s only been going on for about a month and I know that a correct diagnosis of TS needs to have at least one year of tics. Should we continue to monitor?

Concerned Parent

Dear Concerned Parent,

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