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Tourettes and Behavior, Post 1 (and Day 1 of Supplements)

Andrea Frazer

Supplements, Day 1

Above is what I give to Stink every morning. I am adding in some other nutrients I ordered by mail toward the end of the week.He’s still taking his 2mg/Intuniv for focus.

So far, no changes. Lots of low verbals that interrupt his speech about every 20 words. My friends swear their kids don’t notice. I have the best liars pals in the world.

It will take about 1 week to see if the supplements make a difference. But the difference my support system has made on me this week? 100% improvement. (Get yourselves some supplemental good people in your life, pronto!)

Andrea Crackdown, Day 1

I’m putting 10 items/day on Ebay first thing in the morning to bring in a little cash. I’m doing well!

I’m organizing my office.

And also… here’s the big news… I’m attempting to have some fun again! I’ve been a bit ridiculously focused on “fix it” mode when, really, there’s nothing to fix as far as Stink is concerned. If he’s happy and content, then I need to be also. It’s a process. But I’m determined to get there.

Kid Crackdown, Day 1

Fears

When Stink was diagnosed 5 years ago, I feared the worst. I worried he’d be ostracized, anxious and depressed.

Reality

None of those things happened. (Not to him, anyway. His mother? Whole other story.) Stink is thriving, happy and confident. In fact, he’s more than confident.

Reality Check

At times he can be a down right know-it-all at all the wrong times and, well, I blame myself for that.

Somewhere along the way I did a pretty good job at nurturing his soul, but not a great enough job encouraging good habits.

He’s also more crafty than I would care to admit, as well as whiny, argumentative, and more sneaky/jokey than Fred and George Weasley.

And guess what? My daughter – my neurotypical organized A-personality driven Hermione Granger – she’s brilliant at throwing a bedtime tantrum and leaving her toys all over the place.

With our house slowly being put back together, it’s operation Crack Down around here. We’re cracking down on putting stuff away, ending the back talk and establishing peace.

Not for one second do I think, “Oh, poor Stink with the T.S… he can’t be expected to do his share based on impulse control issues.”

Bull.

He can and he will.

So much of his personality has to do with being a nine-year old boy, T.S. or not. Same with my eight year old daughter.

Here’s the new rules and consequences we have.

New Household Rules to keep Mama from losing her brain for a More Relaxed Atmosphere

Morning

* Get up with the alarm

* Make your beds and get dressed

* Breakfast by 7 (Pip showers in morning, Stink at night)

* Breakfast dishes away

* Out the door by 7:45 to walk

If either of these aren’t done, and I have to remind them, they get 5 minutes of cleaning per infraction after school.

After School

* Snack for 30 minutes

* Homework

* Dinner around 5:30

* Pip sets table/Stink clears it

* Bedtime routine at 6:30

* In bed by 7 to read, lights out by 8 after prayers

It’s been a bit rough of a start, but I’m holding my ground. I can’t do it all.

What do I need to do? Relax – not just about about tics – but everything. I can’t be C.E.O. of Character Development, Tic Police, Head of Eating Operations and Chief Maid. I need help, and I’m not outsourcing it.

Something that is important to me, dare I say more important than banishing tics, is self-reliance. It’s my job to have both my kids be functioning adults. If this means more work for a while and less play, then they can deal with it.

And really, it feels glorious to type this while my minions do their 15 minutes of cleaning. Anti-child labor is very underrated.

Come visit me over at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

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Faith, Supplements and Hope: Welcome!

Andrea Frazer

After everything we went through this summer and last Spring with UCLA and their “wonderful” Intuniv program, Stink’s tics are worse than ever. His focus is up, but what is the trade off? The ability to sit still while clicking 50 times/minute plus, oh this is a fun one, at least three shudders/minute? Should we get on yet another medication to help ease this? Maybe some nice narcotic? And then, down the road, shall we go with an anti-depressant to ease some of the social stigma from all the stares and questions about his tics?

NONSENSE.

I am easing away from this stupid drug and all these ridiculous labels about what it means to have T.S.. I always say it, but far greater than a “classification” for symptoms is confidence, and God bless Stink, he has it in spades.

I am not going down the drug route anymore unless absolutely necessary.

And, as fate will have it, UCLA isn’t returning my call anyway. I have tried, for 2 months, to get a hold of Dr. McCracken, via email and phone. He had promised me, after we thought we found a silver bullet in helping Stink’s tics and focus, to tweak the meds if there was a problem. HELLO THERE IS A PROBLEM! But where is Dr. McCracken? Likely busy with yet another study that is funding his research or perhaps a child with more severe issues than Stink.

Which is fine with me. I wish him no ill will. He is very good at what he does.

But I’m good at what I do. It’s called calling B.S. when I see B.S..

I will moderate these tics with diet and some better supplements and, in three months, I will have good news to share with you!

Until then, please love your kids for who they are, not their tics. They are worth it. Life is short. Our kids are growing up fast. Time, like our kids, is ticking. Don’t let fear and a medical community who only knows “pills” tell you how to raise your kid. If the drugs work for you, yeah! But if they don’t, do not give up hope. There is always another way. And that way, my friends, is perseverance and faith and some mama kick butt humor and strength. We’re all in this together.

Next post: Supplements! We started today. I’ll keep you posted.

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What Do You Do For Yourselves When Things Are Hard?

Andrea Frazer

I had such a rough day yesterday. The school called over a forgotten lunch. There was a minor drama with one of my kid’s parents over a misunderstanding which has since been resolved. I was running late for everything. Stink’s tics were back in full force.

So I went to my comfort zone and indulged in a few too many glasses of wine.

Here’s the deal on the alcohol: Did you know that whether you drink one or 4 glasses of wine on a Tuesday, your kid will still tic the next morning? Not just that, but you’ll have a headache and look like crud along with it?

I really don’t think I’m an addict to wine so much as an addict to finding a solution for something that has no solution. It’s really kind of crazy.

Sometimes I re-read these blog posts and I think, “Holy Cow, Andrea, you are obsessed. Are you helping people deal with tics or just not willing to face reality – that reality being that your kid TICS. He’s fine. You’re the idiot.”

One thing I have decided this morning – as I run late again – is I’m not going to be a drunk slob if my kid has T.S.. I’m going to be someone fabulous.

Here’s to Day 1 of no booze for a while. I am going to Oktoberfest next weekend. I hope to enjoy a few beers there! But if I can’t, because my emotions are still in the toilet and I’m drinking to cover up pain over stuff I can’t control, then I won’t be crying in my beer. (Literally.) I’ll be the one with the Diet Coke and the short skirt giving Tourettes education to all the bartenders while my husband gets sloshed.

Good times.

What about you? When you’re a bit frustrated over stuff, what do you do to make it better in a healthy (or non healthy) way?

Andrea

 

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Sunday Podcast #2 – Tourettes, Tics and Discipline

Andrea Frazer

Um, I was clearly kind of punchy on Sunday.

Below is my second of 2 podcasts. The basic point I am trying to make is that whether or not our kids have impulse control issues, it’s still super important to have a discipline game plan.

I remember my husband telling me, “Sweetie, we simply need to find a target and aim at it reasonably.” My response, “Yes, but what do you do when the target is always moving!”

Here’s the top things that worked for me

Drink wine
1. Find a support group (This blog, a private group I have)

2. Be open with friends (I have some awesome folk in my life)

3. Pray (It really works)

4. Find a prayer support group

5. Exercise

6. Set goals for yourself

7. Be honest – some days just suck. There’s no point in pretending otherwise. Just know you can always start over.

8. Yes, really, you START OVER. Every second that passes is a new opportunity to start fresh.

9. Focus on the kid and his/her gifts, not just the tics.

10. Work on accepting the tics you can’t change, changing the tics you can, and having the wisdom to know the difference.

This is a marathon, people, not a sprint. How I wish I had someone tell me that 6 years ago. But now I’m learning.

And, by the video below, I clearly also need a break! It’s coming! Our renter is all moved in and in 10 days, (count ’em) Rex and I are going to Oktoberfest for the weekend sans rugrats. Woooot!

http://www.youtube.com/watch?v=5Q3q1_fbOfA&list=UU7pCFMeJ6X2orNoFbxjJeDg&index=2&feature=plcp

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Sunday Podcast #1 – Blair Witch Project Style

Andrea Frazer

My darling husband just informed me that, due to the angle of the camera shooting up my nostrils and giving me more turkey neck than a Zacky Farms commercial,  I look like I’m making home videos “Blair Witch Project”.

I don’t care.

In fact, I still don’t know where to put the period – inside a quote? Outside a quote? All I know is that, at 42, I’m happy to get a period every month.

This is all I have to say today.

Until tomorrow, here is my first video of 2 this week.

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Dr. Sims and Dr. Stack – Dentists Who Have Cured TS?

Andrea Frazer

Someone in my private T.S. group asked what I thought about Dr. Sims – a dentist on the East Coast who claims to cure T.S. through a mouth piece similar to a retainer.

I likely know as much about Dr. Sims as she does as I have received most of my info through his Youtube videos and publishings.

While many are skeptic, claiming that T.S. is neurological in basis only, I’m always open to new ideas. In fact, I called a similar doctor a few years back named Dr. Stack. As fate would have it, I did some research for this post today only to find that Dr. Stack trained Dr. Simms. Here is a pretty informative article about the mouthpiece and how it works.

* Note: When I called Dr. Stack’s office to speak with him, the secretary said he takes phone calls about the device by phone appointment only – an appointment that would cost me $200. (Given that I am Ebaying one $10 shirt at a time to save for my own miracle cure Brain Balance, I declined setting that appointment time. But I did give him the benefit of the doubt. His work is getting decent reviews. He’s a busy dude!)

Another blogger wrote about the appliance and tics in more layman’s terms. I’ve taken the liberty of cutting and pasting that article below.

The easiest way to understand how Sims and Stack explain Tourette’s syndrome is to consider the experience of accidentally and unexpectedly hitting a thumb with a hammer, touching a stove, or stumping a toe. Many people will utter a loud “Ouch!” or “Darn” or some other expletive we cannot use on a family oriented website in response to pain.

dr_Stack_and_patient%281%29.jpgSuppose the nerve fibers that conduct pain to the brain somehow got crossed with the nerve fibers involved in seeing a woman with large breasts, or being pulled over to the side of the road by a traffic policeman, or seeing a large yellow object. The brain might generate an impulse to say “Piggie! Piggie! Big tits!” or “F—-ing Pig! F—ing Pig!” or “Tweetie Bird! Tweetie Bird!” the same way it generates an impulse to say “S—!” when someone touches a hot stove. (Andrea’s Note of Interjection: Moms, relax. Your kid is not going to curse in circle time. I promise. Moving on.)

People who have Tourette’s syndrome tend to have “crossed wires” while they are focusing on difficult or interesting tasks. They often consciously try to suppress inappropriate speech and movements, until they just can’t. Sims and Stack tell us how this can happen.

The nerves leading from the muscles to the brain sometimes amplify pain signals to make sure the brain gets the message. “Fast” pain fibers in a large nerve enter the base of the brain from the face. Nerves that transmit information about temperature enter the brain at the same place, and the outgoing cranial nerves VII, IX, and X leave the brain in this region.

These cranial nerves control the front of the face, the sides of the face, and the lower digestive tract. Sims and Stack believe that if these nerves are compressed together, they may engage in cross talk, similar to a short circuit, transferring nerve impulses from one to another, partially bypassing the higher control centers of the brain. The stronger the nerve impulse, the harder it is for the higher levels of the brain—which are the usual targets of drug treatments—to intervene and stop the tic.

Dr. Sims and Dr. Stack treat Tourette’s syndrome by relieving the physical pressure on the nerves entering the base of the brain so there is less cross talk. They have developed a plastic dental appliance they call a neurocranial vertical distractor, which “distracts” the fibers entering the base of the brain from the cross talk of neighboring nerves. Fitting over the lower teeth, it holds the lower jaw in place so there is less pressure on the base of the brain. Wearing this appliance 24 hours a day reduces symptoms of Tourette’s disease in adults, as you can see on You Tube. When the proper spacing of the jaws is determined, these dentists report, all tics cease immediately:

Even more promising, however, is the possibility of using this dental appliance in treating younger children who are just beginning to have symptoms of Tourette’s. The first symptom of Tourette’s usually appears at the age of five, about the same time the skull grows tight over the area where the nerves involved in tics enter and exit the brain. The first tics usually involve the eyes.
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Let me go on to say that, similar to the controversy over Brain Balance – a $6000 program that promises to alleviate tics and other symptoms based on re-wiring the brain through diet and specifically targeted exercises –  there is a lot to be skeptical about when it comes to Dr. Sims and Dr. Stack.
“There’s not enough substantiated evidence that this works!” people say. “So what if some people say it works. These guys could be quacks!”
My response to these doubts is the same I give about Brain Balance, “Western Medical doctors are quick to hand out pills to kids to dull their brains and their tics, and those sometimes don’t work. In fact, no doctor even knows why a kid develops T.S., so why is their pill more valid than an alternative treatment? Oh, because they are buying their beach front property thanks to pay-outs by big time pharmaceuticals? Because folk are more comfortable with traditional methods? That might be, but I don’t think Steve Jobs sat around in high school thinking, “You know, my passion for transmitting electronic information over invisible wires is not something the telephone company understands. I better just give up and sell phone books.”
How can we not investigate everything for our children? No one is forcing a gun to my head to buy. Most days I don’t feel desperate for a cure. I’m looking for something that will give my son the best quality of life ever. If something works – say Brain Balance or this dental device – does it matter if I 100% know why?” (Like… why is this formatting so wonky? Don’t know, don’t care. As long as I get the info out.)
So that’s my question to you all: Would you take a chance on something if you weren’t 100% sure why it worked but it worked? And it was non-invasive?
My husband wouldn’t. We are night and day on this issue. While I admit I want “a cure” as much for me as my son (who really could care less) it seems nuts to my darling mate. I think often about my experience with my chiropractic kinisilogist: Rex had no idea how Dr. Carroll could place some vials on my kid’s chest and tell me what he was allergic to. But by golly, one traumatic and expensive blood test trip to the doctor confirmed the exact same results. No wheat, eggs or gluten, along with a myriad of other less offensive food and environmental stimuli.
Another thing? I can meet someone in two seconds and figure out their basic personality- if they are sad, or if they are hyper. I have had to back waaaaay off of relationships with people thanks to their vortex of dramatic energy. (This is why I blog. All you readers would destroy me in person with your crazy mama energy wanting to fix your baby. And yes, takes one to know one.) Do I have a degree from Psychic U? No. But I do have the gift of emotional intelligence.
Granted, paying someone 6k is a lot and I wouldn’t do it based on emotional intelligence alone. But a combo of “this feels right” combined with enough testimonials from others and a solid trust in the doctor would definitely sway me.
Why does my kid have T.S.? What caused it? Why does this dental appliance, or Brain Balance, seem like a reasonable thing to me? Don’t know. But it does. Until science catches up with the root of T.S., I’m going to have to dig into my mama roots and treat my son the best way I can.
I’d love to hear your thoughts.
I’ll leave you with this video from Dr. Stack
More parenting blogs from lots of folk can be found at the New Jersey Center for TS where this blog is syndicated. Want to share a story you have with them? Ask me and I’ll introduce you to the fabulous editor! Love New Jersey!
Here’s one from Dr. Sims
Tics, Tourettes, Uncategorized

Writing the Book: Roadblock

Andrea Frazer

Based on last post, you can see that there’s been a lot going on. Madness is not exactly conducive to sitting down and writing a book. And yet, I can type away here at Happily Ticked Off.

And writers write.

So what’s my problem?

Part of it is that writing about something in a structure format is different from spewing out my crazy ramblings offering up a quick blog post.

A bigger issue for me, though, is the increase in my kid’s tics.

It’s not that I’m so sad that I can’t form a sentence. It’s that I don’t know what sentence to write to finish the book.

Truth be told, I had really hoped this Ticnoir would have a dramatic story but a shiny happy ending: “Here’s where my life fell apart post-diagnosis… here’s where my marriage hit the skids… here is where my two big writing gigs went away… but here’s where Rex and I fall back in love and I’m content with motherhood and my $42.51/month on Ebay and all Stink’s tics are gone! Woo hoo!”

After a few years dealing with T.S., I had no real illusions that there would be a magic bullet for tics. But after all the diet and all the supplements. After all the good sleeping and trying out meds… I certainly didn’t think the tics would be worse.

And yet, they are.

And for the end of a book, that totally blows.

It’s like going to a movie about a woman who loses her high paying job and then has a hard time making her mortgage. She has a hard time feeding her kids and her husband gets sick with MS.

But then, a la It’s A Wonderful Life, the community pitches in. In the last scene of the movie she gets a ton of cash from her church and some fat kid gives her the last nickel in his piggy back. This woman not only saves her house, but has enough funding left over to re-do her kitchen. Her husband was misdiagnosed and her kids have more organic food than they know what to with! There are cheers and shouts and tears of joy! But then, in the last scene, some thug socks her over the head on the subway and steals her huge wad of cash. Her husband gets squashed by a Gremlin and she and her kids go homeless, eating 99 Cent store Mac N Cheese forever. The End.

Who wants that kind of ending? And really, if you’re going to get hit by car, wouldn’t you rather get hit by a Porsche?

I suppose, in a way, this is my apology to you: Sorry, suckers. I couldn’t fix your kid’s T.S.. You can stop reading now.

But again, and I mean this (waaaay deep down): Enter whisper: “If you can’t fix the tics… fix yourself.”

I’m trying.

I really am.

And for what it’s worth, I’m supporting you along your way.

The Bottom Line

Does everything we do to help our kids through diet and healthy choices and meds (if needed) help? Yes. I do believe it does. I believe it could be far worse without it.

The Truth

Ten years old is hard for any kid – especially kids with tics. But this is a season.

Even Better

I’m not in the emotional toilet. As I tell my blog friend, Margaret, “I am not in the bell jar.” Ring ring ring the bell! Maybe that’s the happy ending. That I’m learning to roll with life and never give up. I’m learning to… enter my other theme, “Accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.”

Hang tight, all!

* Photo of me and Topanga T when I was 4 sent by my cousin, D D. Little did I know, at that innocent age, what a ride life would be. But maybe I had the right idea back then. When times get tough, get dancing.

Tics, Tourettes

Brain Balance, Change, Cancer and More!

Andrea Frazer

WARNING: Loooooong post ahead. I am not journaling these days, but I need to. Lucky for me, I have a blog to fill in the gap! Sadly for you, it’s a mouthful. You were warned.

I don’t know about you guys, but there’s a lot of change in the air around the Frazer household.

Renting a Room We’re in the process of bringing in a renter. She’s a lovely assistant at the kid’s school who doesn’t have a car. She’s thrilled to walk the one mile to campus each day rather than take the bus. We’re thrilled because it will give my husband something we both need so badly: Time. The kids love this lady, so to work off rent, she’ll watch the kids 10 – 20 hours a month, giving Rex and I an opportunity to breathe.

Upon hearing we’ve consolidated our livingroom/TV room into one room, turned the dining room into an office, and turned the office into a bedroom for R, most people are really shocked. We get one of two reactions:

1. You only have 3 bedrooms! Why are you doing this!?

2. I can’t believe Rex – who is so private – thinks this is a good idea!

The answers to those inquiries are quite simple:

1. We have needed to get rid of crud for years. The kids aren’t ready to transition to their own rooms yet, so why not get a little income to fix up the house before they finally separate next year?

It’s taken one month of solid work, but we’ve disposed of about 800 square feet of stuff, leaving us with more room and organization than ever before.

2. Rex is as ready as I am to take some of the pressure off, both financially and emotionally. He can’t work 60 hours a week and then always be the beacon of calm when I’m freaking out over Stink’s tics which, is less and less these days, but some weeks I’m human. Last week? Not good. I could use some adult conversation on the nights my hub works late. Also, I am ready to build out my office to get writing work again, but need a better place to create in. The renter is our answer.

Stink’s Tics

Regarding Stink, the tics are still pretty yukky. I’ve decided to go full bore and save for Brain Balance. This is the one time I will mention here that I am accepting donations for this. After I’ve saved $ for Stink, all additional income, minus a small amount I will keep as compensation for writing this blog, will fund other children and families to go to Brain Balance or get additional support in their area for tics.

Please don’t feel obligated to give me a penny. I’ll keep on writing here forever. I just figured, with so many people with less worthy causes making $ off their blog, I would finally try and create a small stream of income for something I find quite worthwhile.

Note: I am open to comments telling me I’m extremely tacky to do this when I have a husband with a decent paying job. I would not disagree. At the same time, I’ve always been quite honest that Rex and I disagree over therapy for tics. He thinks Stink is fine the way he is – which is awesome. Me? I think there’s more we can do. Rex and I have agreed to disagree that if we are going after Brain Balance, this is my project to fund. He will be more than happy to support us and cheer us on, but he  is concerned with saving for college and things that will definitely be in our future, not the maybe’s of an alternative program.

House Transition

Here are some pictures of our progress with the house. Believe it or not, it has taken hours and hours to get cabinets cleaned out. The kids have cried over getting rid of old dressers and bags of plastic toys they don’t need. But in the long run, they are so relieved to have a nice space to call their room. Life, like tics, are always changing. My job isn’t to make them content with everything and spare them from yuk. My job is to give them inner tools to have peace while chaos is happening.

Here are some pics of stuff in progress

LIVING ROOM

We removed a brown couch that was blocking the window. We took out a huge armoire that was taking up space and put the piano there. We now have paths to walk around! Plus, in getting rid of the old, we had room for the new – like the lovely 100-year-old sewing machine you see in the 2nd picture.

Small Fixes: Paint and patch walls, add new photographs as Pip is no longer a new-born, and another cool seat in the corner for more entertaining.)

Dream Fix

OFFICE

The dining room used to look like this

It now looks like this:

Small Fix: Bring the big armoire that is currently storing Ebay stuff (used to be in living room) to the cabin. Bring in old office desk and use the plastic rolling carts for the time being until you can do this:

Dream Fix:

TV Room

It used to look like this

It was very crowded with the art center, the little table, the couch, the TV, the book shelves, the science center…. don’t make me go on. Now the shelves are going into the renter’s room. The old stained couch is gone. We’re building some shelves under the bar area (an un-used space) for all my dishes. The only thing in the room now is the big table and the TV.

Small fix: Take down 1980’s plastic blinds, put up toille curtains. Put a nice curtain over the corner of the TV area (as we don’t want TV in living room) and get a nice tall couch for one side of the table near window that will double as both TV viewing and eating. Build shelves under the bar and cover with a curtain. (Maybe get a nice sideboard when the shelves are moved into the renters room. Shelves not pictured here.) Paint the walls gray and get a chandelier over the center of the table.

Dream fix

RENTER’S ROOM

Here is our old work space office in transition. If you think moving computers into the kids’ shared bedroom, moving 10000 pieces of Ebay into the new “office” and hauling out 10 bags of trash was fun, you would be more wrong than many of the political rants I see on Facebook these days.

But the kid’s room is moving along! Here it is without a good paint job, and with many baskets still on the floor. Not bad for a shared space.

KIDS ROOM

I’m not sure why the last 2 pics won’t right themselves up, but it’s fine. These days life is getting comfortable with things I’m not normally comfortable with. I just know it’s all going to be okay.

Dream Fix (taken from Babble)

OTHER THINGS OF NOTE

Ebay

Today I need to get 20 items of Ebay up today as I’m selling for other people in an attempt to not work for $7/hour retail while I write my book.

Breast Cancer

I need to make an enchilada for a friend who just had breast cancer surgery.

Leukemia

I need to find time to see my other friend, Karen, who is on her third round of chemo for leukemia.

Look how amazing she looks!

Food Shopping

Apparently kids need to eat, and so do Rex and I.

Book

At some point this week I need to write my book some more. I’ve been at a road block which I’ll talk about in the next post.

Ex Husband

My ex-husband died a few weeks ago leaving a 10 year old boy and 2 living parents. He had a random brain tumor. Uggg. We haven’t been close, but I did see him in Christmas, 2011, for a brief visit. I’m glad we caught up and mended some bridges. This was a pic he posted on Facebook with the quote “Me the ex-Mrs. Ingman, taken 19 years after our wedding.” Um, I wasn’t thrilled by that. But hey, that’s FB for you. May you rest in peace, dear Jim!

FINAL THOUGHTS

I don’t know what to say except bring on the tics, bring on the house upheaval, bring on the illnesses. We can this together.

Love you all.

Thanks for listening.

Uncategorized

The Speech Update

Andrea Frazer

Sorry it took so long to write this. I think it’s been the busiest month I’ve ever had in my whole life. But I’m surviving, and I sure hope you are also!

Before I forget, Happy New Year to my Jewish posse! Love you all!

As an update, Stink’s speech went really well. It went basically like this.

Int. Classroom – Dry erase Board reads”Tics and Tourettes”

A blond haired boy, STINK, shuffles in front of the classroom in a too-small Scooby Doo shirt. A bleary eyed MAMA and protective younger sibling, PIP, stand to the side.

Teacher: I’d like all of you to turn your attention to Stink who is going to share something very personal. It is very brave of him to be up here, so please, show your respect.

Quiet all around.

Teacher: So, Stink? Why don’t you begin?

Stink: Okaaaaay. Well, um… see… I have Tourettes and tics. That means I tic. Yeah…. that’s about it.  (Long pause.) So… Mama?

It might be the first time in this young boy’s life he is speechless. This does not forebode well for his Clown College culmination talk where he graduates Magna Cum Loud Mouth.

Mama: You want me to talk now?

Stink: Yeah… give some more details.

Mama: Okay, well, Stink has something called Tourettes. He’s had it since he’s been 4. Basically it means he makes sounds from his mouth or body movements he can’t help. The more you ask him to stop, the more he does it.

Teacher: How does it make you feel when people ask you to stop?

Stink: They can ask all they want, because I don’t mind telling them I have tics, but I don’t like when they go on and on.

Teacher: Well, that’s nice of you, Stink. But what if they do go on and on? How does that make you feel?

Stink: Sad. But they can ask if they want.

The mom and teacher do a double take again, but that’s Stink – always worried how the other kid is going to feel. Mom is happy to have the floor, though, because it’s time to turn the train around again.

Mama: The thing is, Stink can’t help it. We all have things we can’t control or don’t like. Like me? I was tall as a kid. I hated it. And I hated people pointing it out to me. Does anyone else have something that makes them different?

10 hands shoot up in the air. Mom points to random ones.

Girl #1: I have to use a nebulizer to breathe.

Mom: That must be hard, but we still love you!

Boy #2:  I have a twitch in my leg and it’s annoying!

Mom: We know all about twitches in our family, don’t we Stink?

Stink smiles, then he adds:

Stink: Mama gets nervous sometimes and goes to see a doctor to talk about it!

The little shit. So much for privacy.

The mother fields about 5 more descriptions from kids who share their innermost secrets from being a bit chubby, being born with a lazy eye, and my favorite furtive announcement: “I was born with a overbite. That’s why I wear braces – just so you know.” A few kids pat this boy’s back in solidarity.

The teacher finally calls the love session to a close.

Teacher: Okay, so we all know Stink has T.S.. If he makes sounds, he can’t help it, so we don’t have to ask anymore.

Stink:Well, you can ask… (there he goes again) because I can stop… but it’s hard.

Teacher: So what should you do if you hear Stink tic?

Girl #1: Don’t ask!

Girl #2: Ask him to stop but don’t bug him again if he says he can’t help it!

Girl #3: Move away from him if it’s driving you crazy!

Teacher: That third option isn’t really necessary, do you all think? (The class shakes their heads “no”.) I mean, we don’t want our friend to feel bad. I’d say unless you are taking a test and Stink is super loud – which is not the case – you have no reason to change seats.

Stink: But you can ask me about my tics if you want to.

Teacher: Yeah, we got that, Stink. It’s time to walk away from the board.

Stink continues to draw happy cartoon characters with words “Tic Tic Tic!”

Teacher: NOOOOOOOW

Mother: And this is why I take medication. Thanks for letting me speak today, Stink!

Stink: Bye Mommy. Bye Pip.

Everyone hugs.

Stink continues to tic.

Mommy doesn’t even cry.

All in all? A happy ending.

Fade out.

The End

Uncategorized

Great Speech – Now Moving Forward

Andrea Frazer

Stink gave his class the T.S. talk on Tuesday. His teacher – God bless her – canceled it on Friday since the kid who really needed to hear Stink wasn’t in school. I prayed his absence was a sign that the kid had left the school and I could shield my baby from mean children forever. I was glad this difficult student was once again attending class as it would be an opportunity for Stink to practice some valuable life skills in a safe setting.

My mother had a different reaction to the situation: “Take Stink out of that school and put him in a setting that is more open to differences!” Translation: Spare him this pain.

Two years ago I would have agreed with my mom – at least on a knee jerk emotional level. It breaks my heart to see my kid being teased for something he can’t help. But now that five years have passed since his original diagnosis, I couldn’t feel more certain that keeping Stink right where he is – in a public school with all the good, the bad, the ugly and the fabulous –  is the best gift I can give him.

Life is fraught with trials and tribulations. If he didn’t have T.S., he’d be teased for something else. No, running away from the problem would only set him up for failure in the future when he wouldn’t possess the inner tools necessary to deal with adversity.

Call me getting old and crotchety, but our culture, despite technology, is getting dumber and dumber. We coddle more and more. Just take a look at bowling alleys. Oooooh, we can’t have the kids bowl and have their balls go into the guttter! How sad that is! They’d fee like a failure! I know! Let’s place long rubber tubing down the lanes so the balls bounce away from the gutter and knocks down pins! Yeah! Everyone gets to feel like a winner! It’s artificial and they didn’t earn it, but who cares! It’s so much easier than watching them cry. Those darn growing pains – let’s eradicate them altogether, send out holiday cards where we photo shop out their zits when they’re teenagers, and buy them clothes they can’t afford so that mean little bully in 8th grade can’t make fun of them!

T.S. is not easy, but it’s a perfect opportunity to live life on life’s terms. Those terms, correct me if I’m wrong, include:

1. Suffering. We can’t escape pain.

2.Strength: We all need to work on our gifts, not our weaknesses. (Not that ticking is a defect, but it’s outside the norm.)

3. Humor: We need to laugh at the absurdity of ridiculous situations. This can even include chuckling at the concept of allowing a nasty 9 year old boy to define the truths about who our kids are. That’s hilarious!

And so, the night before the speech, I sat him down and said, “Stink, are you ready to do this?”

Stink: “Yes, but I’m sooooo sick of talking about my tics!”

Me: (Note to self: Back off, Mama. I’m trying! I really am!) “I don’t blame you, Stink, but you have to face this head on.”

Stink: “It’s annoying! And I’m tired of Pipsqueak giving me advice on it!”

Just five minutes earlier Pip was aghast at Stink’s story about lunch. That same kid was asking about a silly band on his wrist. “You’re so immature!” he told Stink, huffing off to his Beevis and Butthead playmates who, likely, didn’t have silly bands but were pretty darn good at talking about first person shooter games, their favorite Chuckie movies and how many Coca Colas they could drink and burp out in one day. (I mean, it’s shocking these kids have no inner soul life, but I digress.)

Me: “I get that you’re over your sister telling you to find the teachers on the playground. It’s just she loves you and is worried about you.”

I take his hand in mine and look him straight in the eye.

Me: “But to your point, I don’t want to talk about your tics anymore either. However, you have them – a lot of them these days – and kids are noticing. It isn’t fun, but you need to educate people. After that, if someone still chooses to act like a turd, they can’t claim ignorance.”

Stink: “What’s ignorance?”

Me: “It means ‘not knowing something.’

Stink: “Papa is definitely not ignorant because he knows everything!”

Now how can you not laugh at that last statement? And duh… my husband knows everything. I guess we’ll have a cure for T.S. soon then! Hooray!

The speech went really well the next day. More on it tomorrow.

* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts to the NJ Center or guest blog here? Email me at LifeHappins@Gmail.com

JPG above taken from The New Jersey Center for Tourette Syndrome’s blog