Tag: Tics

Tourettes

Finding the Right School

Andrea Frazer

kids

When Stink was first diagnosed with Tourettes, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was five years younger than me, but acted like a stern sixty year old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted.

“Yes, but he didn’t exactly hold his pencil correctly, and with thirty kids in the classroom and one teacher, we don’t have a lot of room for extra attention.”

“Why in the world, then, with that many children, would I want to spend 10k/year on your school?” I asked, incredulous.

“For the Christian environment,” was her clipped response.

“Oh, yeah, I’m really feeling the love here!” was my retort.

So off I went, enrolling him instead in a local charter school. We’re all different religions and sexualities and neuro make-ups and all kids are honored and get this: It’s free and the teacher student ratio is 22 to 1. Jesus would be proud!

My advice to you, today, is to be sure that the school your son or daughter is in does not reflect what you, as their parent, want. Your child is not supposed to live your dreams. They are supposed to live theirs. And that means being supported in a place that best fits their personality, disposition and academic requirements.

I love my charter school! I have the best communities of moms and dads I could ever ask for. (Literally, there are 15 parents at any given time I can call and say “Please pick up my child… I’m running late!” and boom – DONE. Community is everything. And not just any community. A community you are comfortable in.

Here’s a response from a reader here, Leanne, who spoke in my last post about the importance of talking to your child’s school about any issues they might have in order to best ensure their educational success.

Letter

Yes, my son is on Intuniv for tics.  2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine).  My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv.  We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like.  Horrible. 

He waxes and wanes.  I was scared to death of him starting middle school.  I truly was (yes public school).  So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall.  I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. 

I had a friend go with me.  I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics.  I also had the name of his neurologist and prescriber and phone numbers on there.  That way if they had any questions, they could ask them as well.  I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible.  I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics.  Anything you can do to put his mind at ease, your mind at ease.  The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed.  There are several things schools can and have to do to help, like a 504 plan I think.  There is a lot about school on http://tsa-usa.org/    

He does have loud vocals waxing and waning.  Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar.  He “disguises” it as well with his words in sentences going up and down in volume.  I was petrified of middle school for him.  But I did all I could BEFORE he got there which I think is huge.  Your mind can take you down some dark, scary roads that don’t even turn out to be true.  I think if you met with middle school staff your mind would be put at ease.  This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you.  I will answer any questions any time.

* Photo taken 3 years ago. These kids are still best friends. So much of that has to do with the school. It’s a school that advocates for diversity and togetherness with no bullying policy. I AM SO GRATEFUL!

Check out more posts about Tourettes 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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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

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.

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It Finally Happened – The Mean Kid Tellith Stink To Stop Ticking

Andrea Frazer

Tonight I had to write the letter below to Stink’s teacher. Apparently, this is the week of honest correspondence. Spineless salespeople…. ignorant gradeschoolers… at least I knew Stink’s teacher would be receptive.

From our first conversation last year in the halls – before she was even Stink’s teacher – she demonstrated not only humor and smarts but an emotional intelligence that I’d been dreaming of in an educator.

Still, those fears I had when he was diagnosed five years ago – worries that included being teased and harrassed for noises and twitches he couldn’t control – were finally being realized. It was a somber moment.

At the same time, it was liberating. Because although I wished I didn’t have to deal with this, I wasn’t scared. And my son wasn’t too upset either. Sad an annoyed? Yes. But broken? Hardly. The past five years had been spent concentating on Stink’s strength, not his weaknesses. No fourth grader was going to take him down.

So with strength (I fake it sometimes) and lack of fear (anxiety will hit later when I’m PMSing or out of Zoloft or Day 6 of my no nightly glass of vino quest) I give you the letter which all mothers of tickers worry about writing:

Hi –

So I hate to be THAT mom, but I was saying prayers with Stink tonight and he mentioned feeling sad about some kid named Mama Never Taught Me Empathy I’m a Cry For Help who always asks about his tics.Stink doesn’t care if people ask, and he gives the standard, “Oh, I have Tourettes and make tics. I can’t help it!” and that usually suffices.

But apparently this kid keeps saying, “You CAN help it. You CAN help your T.S..” He will move out of line if he’s next to Stink and say he does not want to stand next to him because of the sounds.

There’s 3 things going on in my opinion:

1. Of COURSE people are going to be annoyed sometimes. As a mom, I get annoyed myself but…

2. It’s an opportunity for kids to be more accepting of others.

3. Stink needs to educate the class on his condition. It might make his tics calm down.

Is there any way, sooner than later, my son can have the floor and just give an update to the class on what it is to have T.S..? I can get a video about it if that will help.

Or maybe Stink can talk about it in a PLC? (TRANSLATION for my blog readers: PLC stands for “Peaceful Learning Circle”. My kids go to a fabulous developmental hippy co-op amazing public charter school. They call teachers by first names. They used to have an assistant T.A. who wore mismatched socks named who sported a fro and went by “ChaChi”. I can’t make this stuff up. Now back to the letter to Stink’s teacher.)

I feel bad hitting you with all this on the 3rd week of school. I just want to nip the “social” stuff in the bud now so I can really focus on, well, getting Stink to FOCUS and be the best he can be.

Thank you –

Andrea (and Rex!)

My question for you readers: So what would you do? No, kicking some kid to Mars is not an option. Stink doesn’t want meds for his tics. He says he feels sad, but not enough for more medicine. He thinks this kid just needs to deal with it. Do you? I see both sides, honestly, but most of all, I’m happy my kid is confident in himself. Still… where do I make choices for him where his social life is at stake? You know, like being invited to a party by an ignorant dumb ass who only hangs out with ignorant dumbasses? Oh, wait…

Note to self: Cancel anti-ticking drug order. And congrats on 5 pounds lost! 10 more to go!

Here are my babies at our cabin this weekend. They cracked us up by surprising us with Twin Day outfits in their suitcase. Of course they had no tooth brushes, but who cares? They’ll be old with no teeth but like each other. Let’s see if Ignoramous STOP TICKING bully boy from Stink’s class can boast that. Well, maybe the no teeth part. If he keeps it up, someone will knock his front chopper out one day. I won’t cry will fake compassion for him.

* 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
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A Cure For Tics! Really! And Pigs Fly! It’s True! (Well, They Sell Cure-Alls!)

Andrea Frazer

I am steaming mad tonight, and it’s not that Stink’s tics are pretty non-stop. Quite the contrary, I am really taking on my mantra: “If you can’t fix the tics, fix yourself.” I am exercising, relaxing, off the wine  (in an attempt to drop 15 pounds) and just counting my blessings.

I’m mad about the response I received from an advertiser who will remain nameless. I will not reveal if this douche bag advertiser sold magic pills, e-books, supplements or therapies for tics. I will just say that they claim to stop twitches and sounds for a fee that’s more than a cup of coffee but less than a pair of Lucky Jeans. (Evasive enough? Good. Let’s continue.)

The ad promises it will work 100% and that their own kid suffered from tics and they can END! YOUR! KID’S! TICS! ALSO! It’s that easy! Wow!!!!!!!!!!!!

I wrote them and said I would do a review for them in exchange for a free product. I was upfront that I could not spend more $ on something that I wasn’t sure worked. “But if it’s all it claims to be,” I wrote, “Then I will shout it from the rooftops and spread the word throughout Facebook and the New Jersey Center for Tourette Syndrome.”

I would run a contest to get him more traffic! It would be a win-win for my son, his wallet, and nervous parents everywhere.

I received a quick response where I was asked for my site stats. I sent him a copy of them. (Believe me – I’m not exactly getting a million hits/day.)

He wrote back 24 hours later with this response. What you see is unedited. The first paragraph is in relation to my question about tic elimination.

His response

From my own experience and from feedback I get from people I would say the following numbers apply:

50% total elimination – it can take anywhere from a week (! but these are rare cases) to 3-4 months

30% significant reduction – and I mean noticeable and significant!

20% no significant change. Although many people say the kids are less hyper and calmer. And happier.

I think you would understand why i am hesitant to commit to your proposal…

Do I send you the eBook, wait for you 2-3 months and then unfortunately your case belongs to the 20% or even 30% and I get a nasty or no review?
My reputation could be damaged unfairly…

YES – i know! The way the sales page appears is as if this is the miracle cure. Sorry ….. so does every other product. 
My website consultant suggested and created it. (the testimonials are real by the way !!!)

If you want I can have (someone) Paypal you some money so it will be a paid post and you can just review the product and mention its existence.
You can also run a contest for a free copy.

I am not doubting your integrity as a writer – i would not want it any other way!
All I am saying is for you to understand my situation and realize that marketing and reality are not always on the same page.

He goes on to say a few more things, then ends it with, “God Bless.”

Where my head spins off its shoulders My thoughts

This person is willing to falsely lead frantic parents down a primrose path and then tell us that we are stupid for believing him since ads are never real. Translation: “We are complete and total frauds, but we need cash. PS: Jesus Loves You.”

My response

Hi Devil Spawn –
 
No problem. I totally appreciate you getting back to me.
 
I suppose I’m disappointed because, even if your marketing director said to do it a certain way, it’s kind of false advertising. Either it works 100% or it doesn’t. Your ad is appealing to people like me who, in desperate situations, will do anything to make their children’s lives better.
 
I think it would be more honorable to tell the truth: This works x amount of times and in x amount of cases. But that doesn’t sell as much product.
 
I don’t mean to sound high-handed. But it’s disappointing.
 
For the record, I would NEVER repeat an email from you or discredit you in any way. I’m not into character defamation of any kind. But I will tell my readers to be aware of ads that promote cure-alls.
 
I would ask you to humbly search your heart and consider revising your statements in your ads. It would add sooooo much validity to you.
 
Again, thanks for your honesty in your letter back. I wish you the very best.
(Note to my own readers: I am only repeating some of their email and gave no names, so I stand by my word.)
Their response

I agree !!!!
In an ideal world…..

I’ll tell you what:
Show me ONE ad/website/print that gives percentages and I will pay to have my site revised and rewritten!!!!

God Bless!

My response back

I do understand. I really do. But this isn’t a cleaning product – it’s placing false hope for a real disorder that affects real people. I understand that you need to make money, but there are some things where it’s more important to do the right thing. THAT’s what God blesses. It’s not a catch phrase or an email tag line. 
 
With all due respect, you should be really ashamed of yourself.
His response back
I’ll never know. I will delete it without looking at it. I can’t waste any more time on this. As the Bible says, “Don’t throw pearl to swine.”
God Bless!!!!!!!!!!!!!!!!!!!!!!!!!!!
* 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? Email me at LifeHappins@Gmail.com and I’ll personally introduce you to the editor. Let’s get Happily Ticked Off and do something to support each other!
Uncategorized

Stay a Julia Child at Heart

Andrea Frazer

As the summer winds to a close, so does my ability to think past one minute intervals. I spend my beloved “free days” (days the kids go to friends’ homes due to trades) house cleaning, Ebaying, food shopping and hitting thrift stores. My soul is restless. I’ve barely written at all.

I can’t wait for the kids to leave the house for some much-needed structure beginning Thursday! But I know I’ll be sad as well. I love their little spirits so much. Their joy for life is infectious.

As I always say, joy and character far outweigh a few tics.

I don’t know about you, but I’m pretty sure Julia Child would agree! If she were still alive, I’d invite her into my meager kitchen to whip up an amazing gluten free caesin free meal. I’m not sure that would be possible, given she cooks with more pasta and butter than we buy supplements around this joint. But in my fantasy, she’d have a twinkle in her eye, pass me glass of red, and – as she says in this video, “Bring on the roasted potatoes!… I love to smell something cooking… makes me feel at home!”

I just want to hug her. On days I’m a bit down or fear the future, I’d just lay my noggin on her bad polyester shirted shoulder. She’d pat my back with that big paw of a hand she has. She’d cluck cluck that life isn’t always perfect. Then hand me a duck as big as my head and tell me it’s time to get cooking.

I hope you enjoy this video as much as I do. I literally cried when I first saw it. There’s something about her complete ease with herself that makes me feel that the world is okay.

And your son or daughter with the tics? Trust me… you keep on loving on them and they will be fine. Julia Child couldn’t cook until her mid forties, so don’t think you will find you peace with this nutty disorder in a day. But you will. And one day, how fun will it be for us to gather around your table and have a glass of wine together?

Bring on the roasted potatoes! Bring on Julia!

Uncategorized

How Is Everyone Doing?

Andrea Frazer

Well, the moment I write “tics are gone” they always come back. But they are still at a minimum and I am very happy with the Intuniv. Stink is still Stink: happy and charming and sometimes a bit toooo silly. But I’ll take that over a flatlined robot.

I don’t know about you all, but I am finally hitting the wall with this summer fun non-sense. If I do one more load of dishes, or fold anymore laundry, only to see it pile up again in the course of one hour, I will lose my brain.

My kids have gotten excessively argumentative and hyper. They need structure. Apparently there really can be too much of a good thing in terms of swimming, friends and hang out time. It’s time for a schedule!

As I type this, 4 kids are running through the house. I normally take them to the pool or the Y or even Grandma’s house. Today? I’m cleaning. My house looks like a giant petri dish.

In closing, I am pretty stoked that I have air condition in this weather! And while I’d kill for a house that has more shelving and a prettier kitchen, I’m pretty darn grateful for what I do have. Pandora music, some fresh coffee, health insurance and a family I love so much I could die? I’ll take it.

What’s new with you?

My fave new song to go with housecleaning!

Uncategorized

Empathe TIC – My Kid

Andrea Frazer

Vacations are great. Not only do they force you to slow down, but in doing so, you observe and feel things you might not otherwise with the hustle and bustle of real life.

One thing that has surfaced came from my little Stink the other day. I told him something he couldn’t do (after he and his sister’s Lord of the Flies excess experience at the beach house) and he started to cry.

I hugged him, explained why he couldn’t do it, then went on to pack for our mountain getaway. (Surf and Turf in one week… I know, life is tough… stay focused.)

Within moments a very sullen boy came into the room. I was prepared to hear a dissertation on why an extra six hour, 2 minutes and 37 seconds of electronics are not only okay but good for him, but instead he just sputtered, “Mama, I think 3 pills are too much for me.” He was fighting tears.

I sat down on his Scooby Doo bed and took him in my arms.

“Why do you say that?” I asked.

“Because I keep getting upset,” he said.

My kid is a con-artist. He can say anything to get his way, but I could tell this time was different. I dug deeper.

“You mean, because you can’t have extra treats like at the beach house or more computer time?” I offered.

“No. I mean… I just feel more sad… It’s like I have these mini cries… a lot… over little things.”

I was floored. I wasn’t surprised at his feelings – just yesterday my husband remarked that Stink seemed a bit too muted. A friend, a few weeks back, remarked that he seemed super mellow. Topanga T, during our Saturday get together, commented that he seemed a bit too robotic.

And yet, check out my previous post and video – he seems okay! I figured the pills just needed a few weeks to titrate.

But after talking to Stink a few days ago, my mama bear instinct kicked in. 3 pills really are too much for this kid. We need to back it back down to 2. Minimal tics are great. It’s been awesome to feed him crud and know he’s not going to spin like a tilt-a-wheel, and his focus is awesome, but at what cost? So we can then put him on antidepressants to combat the downer effect? This makes no sense.

We are going to back it down to 2, but first we need to talk to Dr. McCracken on Monday after our trip.

“Stink, we will cut back for sure. But we can’t do it before UCLA. Do you think you’ll be able to manage your mini-cries until then?”

He looked up, teary, and then smiled. “I think some extra computer time could really help.”

CON ARTIST.

“Fine,” I said. “A little bit only.”

SUCKER.

Take away for moms and dads thinking about starting meds for tics or focus: If you can hold out until your kid is at the age where they really know their bodies and can speak about the effects, it’s super helpful. Sure, a few years of hyper activity or trying out diet and supplement techniques are a pain (but yes, they really help in managing symptoms) but it’s a great baseline. If you start meds at 4, when they are 9, how will you know what their true personalities are?

* Butt coverage: Some folk absolutely need meds due to extreme ADHD or extreme tics. Of course, there is nothing wrong with that. It’s simply my theory for parents of kids who have medium to mild tics/focus/hyperactivity. And trust me: nothing helps build a parents’ tool box of character, patience, grace and forgiveness than learning to accept and nurture a child who isn’t a perfect cookie cutter kid.

Until next time, hug that ticker of yours today!

You can now follow me on Twitter: @AndreaFrazer. (Watch out – I might start following you.)

Tourettes, Uncategorized

What Makes Us Tic

Andrea Frazer

I’ve been doing a lot of soul searching lately. It’s dawned on me that since my kids were born almost ten years ago (Stink will be 10 in January and Pip will be 8 in two weeks) I have done nothing but run. I run to ballet practice. I run to the market. I run to Ebay ten dollars worth of used ballet shoes. I run to cook up that $4.00 batch of chicken I just got at the market.

There’s nothing wrong with running – it’s part of the mothering experience. And truthfully, I just love the energy of it. (It’s this joy that has me running here to blog!)

But in running, I also am hiding. In particular, I have tried hiding from Tourettes.

Maybe you have done this also?

Maybe you have told yourself, “If I just find the solution to these damn tics all will be okay.”

For me, the miracle finally came.

Stink got some medication. And his tics are at an all time low. (Though they are up 30% the past few days due to computers, yukky food, excitement, etc.) And now, with things okay in Stink’s world – with that magic pill and the answers to all I wanted to make everything okay – I’m starting to unravel.

Why is that?

Am I someone who is wired toward anxiety or fear? Do I need chaos to feel okay?

The truth is, it’s neither of the above.

It’s starting to dawn on me that life itself is nuts. This isn’t good or bad. It just is. People are weird. We’re weird. Nothing goes as we want it to. There is no fix. There might be a magic pill to calm down tics, but there isn’t a magic pill for life. All the booze, pills, exercise, money and running isn’t going to save us from things we can’t control.

And this is why I’m a bit unnerved. Now that I know Stink is going to be okay (he always was) it’s ME who needs to grow up and take life on life’s terms.

* My mom is getting older

* Some day my childhood home will be sold

* Family dynamics aren’t as Little House on the Prairie close as I’d like them to be

* My career isn’t what I had hoped it would be

* My husband is only able to relate to me in the way he can relate to me – he isn’t Prince Charming who can magically read my mind

* My kids won’t be babies forever

Instead of hiding behind the tics, or running, or blaming others or blaming myself, or holding on to my own childhood that is no longer there to comfort me and keep me safe, it’s time to let go. It’s time to just feel whatever I feel. Happiness at the dog across the street who rushes over to my doorstep every day for a treat.

Joy at watching my children sell beads in the kitchen for magical money and a kiss.

Gratitude that my husband makes a good enough living that I can sit at home on a Tuesday and type this post.

And absolute abject fear and terror of how much things are going to change in the next ten years.

Perhaps, like me, you don’t like fear. It’s, um, scary! You consider Zoloft. You drink too much wine at night. You work yourself to death to, there’s that word again, runnnnnnn from it.

But guess what? At some point, you’re going to come to the same realization I have that you can run but you can’t hide. And that horrifically tragic moment wonderfully life altering experience when you slam right into that wall and slide down and you’re exhausted and tired and hurt and angry you have the chance to do something wonderful, you can either:

1. Grab onto your ego and put on your make-up and fake it that all is okay and buy that fancy home in the hills and live a fake life with dotted “i’s” and crossed “t’s” where nothing is unorderly and all is accounted for in your bank account and living room or…

2. You can just go out into the world and show it your scars. You could be shocked at the response you get. Sure, there might be a few, “Oh, God, you really look like crap. Just get it together and grow up and buy retail and suck it up like the rest of us… with good hair please…” But more than likely, your battle wounds will be a beacon to others fighting the same battle. “Hey! I have been there also! Check out my knee scrapes! Got them from too much praying and digging in the garden with my kids and this one? Dropping to the ground at Good Will to score that train table before that other bitch grabbed it.”

I’m tired of “shoulds.” (I’m shoulding all over myself.) In allowing myself just to accept the ever-changing tides of life, I can float on the waves rather than drown in the longing that it were something else. It’s the wanting – this unrealistic wishing of what can’t be – that’s been the key to my discontent. Life won’t be better when my husband changes or my childhood home isn’t sold or I get an amazing job or this book is done. Life is okay now – just as it is.

I’m ready now to face this. It’s a scary journey, but one that is going to open up a whole new life of peace and joy. But for a while, there just might be some tears. And really, I’m okay with that. Discomfort sucks, but I’m brave enough to try if you are. Pema Chodron is someone I have recently discovered. My Christian friends might tell me to pick up a Bible for comfort – and I do. But I’m also picking up her book. It’ll arrive in the mail soon and I’m excited to read it.

You can check a bit of her out here if you’d like!

http://www.youtube.com/watch?v=A4slnjvGjP4

Until then, I’m off to be at peace with life on life’s terms. Wish me luck!