Tourettes and Behavior, Part 3


Tics have improved 90% from 7am to4pm. By 5PM, when he’s tired, we’re at a 60% improvement. Almost no verbal clicks or sentence interruption. Minor shudders only.


Other than having the teacher write to me saying that he and his best girlfriend, Miss Z, had to be “talked to” for playing tag by patting each other on the butt, he is doing awesome.

NOTE: Because I have written this down, I will be cursed and he will start baying like a horse and be suspended for setting the lunchroom on fire tomorrow.

Good night.


Tourettes and Behavior, Part 2 (Supplements, Part 2)

Supplements, Day 3

* Lots of shuddering, but hardly any chirping. I’m scared to even say anymore about that.

Behavior, Day 3

Much easier day today with a lot less arguing. Even if they forgot a few chores and I added in 5 minutes of extra cleaning later, no complaints. Again, let me fall down dead.

Okay, I’m back up. Here’s my real post below.


As you all know, I’m hardly an expert on behavior. But I can speak for the facts, and those are that my kids really like each other. It’s not because my daughter sucks it up to hang out with my wacky boy, or vice versa. It’s because they truly respect each other as people.

I’ll take a little credit for that (since I can’t take credit for curing T.S.) and go so far as to say that you have to show kids how to treat each other. This often means playing bad cop and not worrying that their self-esteem is going in the toilet because, God forbid, you make them clean the toilet.

I don’t know about you, but I think our culture does such a disservice to our kids. We try to do everything for them. We feel guilty if we can’t. Or we try and over compensate by spending our life savings and credit cards on extra curricular classes and “feel good” artificial experiences when really… really… what they need is to know that they are okay just because they are.

When I began to embrace this idea, I felt less worried about the T.S..

While selfishly I hate the noises it brings, I welcome the invitation it offers me. Every tic seems to chirp, “Andrea, this is one more opportunity to live life on life’s terms. Since you can’t fix the kid, give up the idea that he is supposed to have a perfect life. Let him, not you, earn that confidence.”

So with that, I give you 10 tips for getting your kids to clean up after themselves because, gosh darn it, you shouldn’t have to. (And you’re doing them a service by letting them take responsibility for their actions. I swear. Trust me. Or don’t. I’d love your opinion)

10 ways to get your kids to work

1. Have a family meeting: Let them know you love them to pieces, and because you love them, you’re going to help them be more part of the family

2. Have them come up with ideas of things they can work on: Some ideas you’ll keep: Taking out the trash or clearing the dishes! Others you will ixnay, like: We get to go to Chuck E. Cheese every time we remember to flush! It’s not the ideas you follow up on with the kids that count. It’s listening to them that makes all the difference. (But in the end, it’s a dictatorship. Mom rules. So sorry!)

3. Don’t install more than 3 new things at a time: I heard once that kids can’t take more than 3 changes at a time. I’ve found that to be true. Work on those for 21 days until they become a habit, then move on to the next three. Want to write a list of 100 things that need work? Great. But don’t implement more than 3 at a time or you are headed for frustration.

4. Don’t expect perfection: Tuesday, Stink finished “washing” the back windows. They are more spotty than before he started. But the dirt is off. This will still be easier for me to clean tomorrow. I’ll take it!

5. Stop Feeling Guilty Already! Having our kids work, even if they cry and complain at first, is the best gift we can give them. I find it even more important if they have “special needs” of any kind. If my kid is going to tic his way through 4th grade, he’s also going to do it without food on his face, an organized back pack and a good understanding of when it’s appropriate to tell a joke.

6. Laugh! It can’t all be about work. When it’s done, don’t over compliment them. “Congrats on your mediocrity!” Stay calm, say thanks, and then pull out a board game. It shows that life is about work and play.

7. Stop working at a certain point in the day: It’s so important to enjoy our kids, even if they are bugging us. The less stressed you are – which means you aren’t trying to Ebay while getting them ready for bed (Ahemmmmm) the easier it is to appreciate them.

8. Come up with an allowance: I used to pay 25 cents/day. I’d have the nickels waiting in a family jar in the center with two tin jars on either side for Stink and Pip. When they did their job, I did a fine job of letting the coin clink clink clink in the can. This helped on 2 fronts: They got the instant gratification of money when they did something. When they argued or complained, I made them walk over to their jar, take out a nickel, and put it back in the family jar. If they complained about that, they got to put 2 nickles in.

9. Don’t be such a task master! When we used the jar system, I’d often have the kids take random nickels from the jar and pay themselves. “Just for bringing your dish to the sink without asking!” I’d say. Encouragement is good.

10. Give kids the day off. We try not work on Sundays. No beds need to be made. No major chores. We just put away what we take out.

We have a LONG way to go, but this is what I do to keep my sanity. Would love to hear your thoughts!

Now if you’ll excuse me, I’m off to search for cool laundry baskets. Guess what job Stink is getting when he turns 10? I know. He’s so lucky. As pip likes to say, “Stink is going to walk around with a lot of dirty clothes, Mama!” (Smart ass. She’s right, though.)

* Photo taken on Wednesday morning. They got up, made beds, brushed their teeth AND did their hair by 7:30. All on their own. It’s a miracle!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (My big win? If my kid is going to shudder, he’s not going to do it with yukky hair and yellow choppers.)


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

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


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


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.”


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


* 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.


Faith, Supplements and Hope: Welcome!

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?


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.


What Do You Do For Yourselves When Things Are Hard?

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?




Sunday Podcast #2 – Tourettes, Tics and Discipline

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!



Sunday Podcast #1 – Blair Witch Project Style

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.


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

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.
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