When You Can't Fix the Tics, Fix Yourself
In an effort to get people connected, you can now find posts from this site as well as other inspirational T.S. related stuff, on Facebook.
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Talk at you soon – and can’t wait to connect.
In my third video of a series of acupuncture pieces, Martina Eberhard discusses the difference between Chinese and Western Medicine. Hint: It’s not that one doctor’s office has Fortune Cookies. Though if one did, I would make sure yours read: “Focus on you child’s gifts today!”
Happy end of weekend.
Andrea
My last post about my tic resolutions (what I can change, what I can’t, and having wisdom to know the difference) generated quite a bit of buzz over at The New Jersey Center for Tourette Syndrome where my blog is syndicated. While many people 100% got my point of view, I got a couple pretty negative comments. I had a few reactions:
1. Wow, cool! I’m finally pissing people off! People are reading!
2. Ouch, ick. That stung. Poor me. Let me go cry to my friends on my “Twitch and Bitch” forum.
3. Logical schmodgical: What if I really am offensive?
#3 stuck to me for a variety of reasons. Let’s start a new list, shall we?
1. I’m not writing this blog just for me. I’m writing it for others. It’s my duty, as an “educator” to be sure I am communicating effectively.
2. There’s a fine line between being a narcissist and writing compelling, memoir-driven articles.
3. Most interesting realization of all: Insecure people, even among friends and family, will often skewer people they know as being narcissistic because of their preconceived views of who that person is and should be within the framework of their very own insecure lives. People have a much easier time extolling the virtues of “other” writers – you know, the ones with the pretty book jackets who end up on “The View” or “Huffington Post” – who already have stamps of approval by the public at large.
4. Referring to #3, once my book goes, said haters and cynics will suddenly tout me as being right all along. Yeah me!
5. As a Christian, I would be nothing more than a hypocrite to push any of this in their face, or respond to negativity with like. I must love them as Christ loves me, and if I can’t, enter Christ. For those in the #3 camp, this #5 statement makes me not only a narcissist but a self-righteous one at that.
6. This leaves me with #6: “If God is for me, who could be against me?’ Romans 8:31
I don’t just tout #6 as a fun inspirational flag-waving-attempting-to-accept-tics-and-not-ruffle-feathers-mama. I feel it. I care about people, but if people don’t like me, I don’t really care. It’s lovely living in this place! Come join me if you haven’t bought property yet. The neighbors are friendly, there’s lots of laughter and the wine is fabulous! (Being good on the wine, relax.)
I did write to Jeff Weber, New Jersey’s fearless web master, to be sure I wasn’t being offensive. He gave me the pass, so off I go to do what I do!
Acupuncture Update: In closing, Stink’s vocals are still gone. He was complaining of loose stools from the supplements he was on, so we backed it in half. Unfortunately, his head shakes came back full force. That’s the bad news.
The good news is that Martina, his acupuncturist, believes he just needs to adjust to it slowly and the tics will go back down.
Martina Does Acupuncture Phone Consultations: Want a consultation on how to find an acupuncturist for your child in your area? Martina is available for phone consultations. She won’t recommend specific businesses, but she’ll get a sense of your child’s symptoms and then tell you what to look for in the right person, giving you specific acupuncture terms to use in narrowing down the right professional for your child’s needs.
Martina’s Consultant Fees: She charges $40/half hour, $60/hour. She’s versed in nutrition and supplements and can lead you in the right direction. Look soon for a new video of her treating Stink!
Martina’s In-Person Fees: Martina is in the L.A. area. Consult her directly for prices. Rates go down if you buy a packaged deal which, honestly, is recommended as she will want to start treatment 3 days/week and reduce as symptoms wane.
Martina’s Contact Info: You can find info on her at the link above. For quick reference, call her at 818-378-4157. You can also look up her website or email her at Martina@YPIH@Gmail.com
Tell her Andrea from Happily Ticked Off referred you. I get absolutely no referal fee for this, but it does help her adjust her prices to you. (Pssst. I’m takign care of you!)
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.
* Picture is “Woman in a Purple Coat” by Matisse. It always inspires me to live a life of purpose, joy and love. She just looks so relaxed, yet confident. I’ll take some of that, and a back scratch. Thanks!
Keeping this short as I’m at work. (Unless you’re my boss reading, in which case I am diligently coming up with 75 Examiner Headlines.)
How was your holiday season? How are the tics? How are you dealing with them?
One dear friend of mine from my private group keeps a Victory journal. It’s a faith-based writing memoir in which she shares her struggles and hopes for her son with God. By writing down verses and scriptures, she has an automatic go-to way to release some of her fears. I love that!
As for me, I am a pray-er and list maker. Here are my goals for dealing with Tourettes this year. Would love to hear yours.
Fantasy Goal
Not let tics bug me in the least!
Realistic Goal
Find the courage to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.
Vocal Tics Gone
Thanks to acupuncture, Stink’s vocal tics are gone. I mean GONE. Given how much crap he ate over Christmas, combined with video games and lack of sleep, I don’t believe this is just coincidence or part of the tic cycle. Acupuncture is the reason, so I’m grateful. (Stay tuned this week as I video tape the lovely Martina speaking on this subject!)
Still Shaky Shaky
Unfortunately, my son’s head shakes/nods are at an all time high. I mean, NON stop. (How they don’t bug him is amazing. I honestly get so drained being around it sometimes. I swear, it’s ME who needs some kind of hyno-therapy for this. Still, not depressed like I was years back. Just working on acceptance. There is hope!)
Martina thinks that the supplements will kick in after six weeks and to be patient until then. If the constant shakes don’t go away, it’s time to reconsider how much time he spends on the computer.
NOTE: I pray that he does find relief via the herbs she is prescribing, because he SOOOO loves his gaming. He is not playing all day. He plays weekends only. During vacation he plays 1 – 2 hours/day. This might seem like a lot, but as a kid, I watched TV 1 hour-2 hours/day. I also biked and ran and hung out with friends, just like Stink. We’ll have to see.
Realistic Plan for 2014 for Tic Treatment
* Gluten free unless a birthday party in which he gets pizza and cake. (Similar to me and wine. It’s all moderation.)
* Computers weekends only except 10 minutes/during week to feed some virtual plant in some game. (I know, it’s dumb)
* New sport introduced for daily exercise
* Dog for him to walk daily! (Stay tuned! He got a promise for a dog on New Year’s Day which was also his 11th birthday! Tics increase in the tween years, so I’m keeping this in mind.)
* Acupuncture 3 days/week + supplements
More Hardcore Plan if tics don’t decrease by Spring
* No 10 minute virtual plant feeding during week
* Going dairy free again
* Revisit the idea of Brain Balance now that I’m working and might be able to swing the 5K
* Consider some kind of Lens Treatment for tics
* Revisit an environmental doc to guide me on pros and cons of letting a kid be a kid (video games) and supplementing with good stuff I’m already doing
For Me
* Daily exercise
* No wine during the week
* Church on Sundays with family
* Bible Study daily (just ten minutes)
* Life Group (small groups of people thru church) to connect with once/week and remind me that my life is not based on tics but something so much greater than myself
I pray that 2014 brings you peace that transcends understanding. I pray that you (and I) remember that all kids have something. We can’t always fix the tics, but we can encourage the gifts our kids are born with. Personality trumps Tourette Syndrome. Love you all!
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.
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.
Suppose 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:
Here’s the upswing of an uptic. I’ve done this long enough to know that this, too, will pass. It simply can’t be that the meds aren’t affecting him. And so, we will wait it out and start over again this summer. Things seemed to be best when we did acupuncture twice a week. So that’s what we will do again.
And then, if my book gets sold, or I decide to get off my butt and get a job, I’ll do Brain Balance.
But the one thing I won’t do, tics or not, is go back to that place of “my life will only be happy when my kid stops ticking.”
That’s just silly.
As I type, the babysitter is playing hand ball with the kids. I cleaned the house while she made dinner. Tonight I’m picking up the lovely Adelia and off to see Chicago we go! First stop, dinner in Hollywood. Oh, what was that you said? No, the tics weren’t invited. They will be put in their place where they belong which is out of mind so I can enjoy myself.
I hope the same for you. Enjoy yourself! Your kid is fine and so are you!
When I was in the middle of my big “do I or do I not follow through with this UCLA study/medication” I spoke to one of the doctors. She once again told me the pro’s and cons of Intuiv. The pros: It’s been on the market for 20 years. It’s got very few side affects. The cons: It can make a child really sleepy and sometimes faint due to its blood pressure lowering attributes.
I was still so iffy. It seemed weird to push my kid toward medication when Stink was content with himself. “He’s happy. He loves his tics!” I said to Dr. J..
Her response was a bit startling to me. “Yes, you’ve said that and so has he. It seems kind of odd, though… this whole liking his tics thing. What’s the meaning behind that do you think?”
I had to pause. What was she implying? That somehow Stink was living in Delusion Land? That perhaps I, as a mother, had been feeding my kid the Kool Aid all these years? (Note: This Kool Aide would of course be organic and dye free.)
Dr. J is really great, so I’m not annoyed at her, so much as surprised by the reasoning. Isn’t it possible that a child could like themselves, despite a few tics and twitches?
Is it possible… not to pat myself on the back (but it beats the alternative of flogging myself with fear so go with me)… that Stink was brought up to believe that he, as a person… as a soul… is valid, despite a few “flaws” in the form of tremors and twitches?
And is it at all plausible that this self-confidence is not a side-effect of “potential” Aspergers – the syndrome where people are considered non-self aware and self-focused to an extreme – but the ease in his own skin has to do with the fact that… here’s the zinger, folk…. he actually likes himself.
This leads me, once again, to my feelings about God. (Sorry to you non-faith based folk.) As you know, I’m on a Christian path. It’s one where I have my doubts right along with my blind acceptance of improbablilty faith. But the crux of the matter is this: If some dude really came to life as God in human form, was nailed to a cross, then rose from the dead to have new life, isn’t it possible that my own very human son, through the grace of God, could rise above his own wonky circumstances and love his life?
From my impartial perspective (ha ha… like I could ever be impartial about this little Stinker) my son’s love for his differences come from a combo of 3 main things:
* Personality
* Home life
* Faith
Like the trinity I look towards as strength and support for my joys and sufferings, how can I not look to the trinity of those three attributes and give all of them a little bit of credit toward his contentment?
Never to be underestimated or overlooked, so much of who Stink is comes from his sister. She is his greatest fan and advocate. As the sibling of a “special needs” brother, I am acutely aware that she needs the same sort of honor and time as I give him.
The other day, I said to her, “Pip, you know, there are groups for sisters of kids like Stink. I could totally sign you up if you’d like.” Her eyes got wide and she squealed, “You mean, a group for sisters who have brothers as awesome and funny as Stink?!”
I laughed out loud. What do I owe such an amazing daughter to? Perhaps more of the 3 above. I’m beyond grateful.
In closing, going along with my gut (or as my faith calls it, The Holy Spirit) I really felt compelled to follow-up on this drug study, despite Stink’s protests. “I won’t do it!” he stated in the bathtub one night. “I will spit out those pills! I will pretend like I’m swallowing them and stuff them down the toilet!”
“UCLA is going to give us $25/week for eight weeks for participating in the study. I’ll give it to you to save toward Disneyland tickets,” I offered, figuring he’d turn me down anyway.
“Sounds good to me!” he conceded.
I’ve now got a son fifty bucks richer, two times more hyper likely due to a sugar pill and one happy sibling who will be tagging along with him to the Happiest Place on Earth.
This Jesus of mine clearly has a good sense of humor.
* Photo taken last week before the kids’ music show. That’s my Pip on the left. Miss L is on the right. Stink is, of course, front and center. It’s shocking he’d pick out clothes that would make him stand out so much, huh?
I’m back. I’ve missed you all. How have you been?
I’ve been busy Ebaying and organizing my office. I’ve been swimming in Great Grandma Stella’s pool. I’ve been attempting to get in shape and get more sleep and pray and laugh and maybe, just maybe, I’ve been obsessing a teeensy bit more than a boatload of elephants at a circus parade about my decision to keep Stink off focus medication.
To be more specific than last time – because it’s just easier to not be cagey (like those poor elephants in the previous paragraph and shut up about that joke it was funny) – the idea of high functioning Aspergers came up at our last UCLA meeting. As I mentioned also, combined with many visits with teachers over the past few years, I decided to look into it more via a UCLA diagnostic study.
Shock of all shock, Stink fits the description for being “on the spectrum” and is a candidate for their drug study – one that uses Intuiv. Intuiv is used for ADD and UCLA wants to see if it helps kids deal with Asperger symptoms. Continue reading “I Changed My Mind on Meds – Because I Can”
So most of you know how much I love Mario I hope that little fat fxx gets offed by Japanese Gaming Executives and is replaced by a First Person Shooter Game called “Crunchy Mama Vs. DS Satan Zombies.”
The object of the game is that the virtual hero you create, preferably a flabby ass forty year old like myself who wears thrift store Ugg boots and wreaks of Yuban, gets to huck gluten free cardboard type spelt bread at the heads of Video Game Creators. For every head that rolls, it’s one less tic you’ll have to deal with.
Lead players will also wipe out:
* Aspergers
* ADHD
* IEPs
* Un-inspired educators
* Uneducated buffoons who spell Tourettes “Turrets”
* Dill
That last one on the list? I just added it because I hate dill.
Without getting too personal about my son’s life – which is a joke because this whole blog is dedicated to analyzing every aspect of his confusing syndrome – I’ll say that I’ve been most frustrated about his obessions lately. The tics? Very very minimal. God bless acupuncture! But the constant never ending talk about Mario. DRIVING ME INSANE OH MY GOD SHOOT ME I’M GOING TO GO CRAZIER THAN I ALREADY AM.
Let’s assume he has a pending diagnosis that would make his inability to focus on anything other than his favorite topic impossible. Let’s say that with this diagnosis is hope for a brilliant academic future but a decent chance that he’s wired the way he is for better or for worse? Even if that is the case, I can’t take the talk about Mario 24/7. He has to curb it.
So I’ve installed the new Mario Behavior Chart which I’m making his teacher implement. It goes like this:
* He gets a star if he doesn’t talk about it before recess
* Same thing before lunch
* Same thing before dismissal.
* His teacher gives him a few extra stars if he doesn’t interrupt, say inappropriate things, etc.
I don’t care how much he talks about it on the playground.
This new system, let me say, is working! It’s not intended to be about censorship. It’s about letting the side of his brain that is super intelligent work on learning other stuff. It will allow new people into his world and enrich his relationships. It will tie in his weekend game time to good behavior.
This has all taken an incredible amount of patience. If I could, I’d drink three glasses of wine/day – I’m that tired by 8PM. But drinking is a slippery slope, so I’m not.
Not until Friday.
And then, all bets go out the window. Stink can play his beloved Wii and I can down some good red wine with the girls.
And on Saturday, during his Star Wars themed birthday party Fat Fxx Mario Debacle, I will be the first to take a baseball bat and whack the living lights out of that Fuzzy Plumber Pinata.
I’m obsessing a bit tonight. Do you think I have Aspergers or am I just jonesing for Friday?
I’m back! It’s been about 2 of the craziest weeks since the holidays. If you’re like me, between kids and working and hobbies and errand running and family obligations stuff just gets so busy everything gets done but nothing gets done well.
I don’t like that. Call it the perfectionist in me, but doing a lot simply to check it off the list isn’t good enough. I want to be present in my life – even the mundane stuff like house cleaning and walking the kids to school.
Someone who knows a bit about mindfullness is a writer friend of mine, Kate Hanley. Check out her weekly column at Ms.Mindbody. She’s even written the ultimate Chill Guide which you can find at her website.
I can’t even close to call myself a meditator. One of my biggest beefs with that practice has always been, “How can I find silence when my kid is vocally ticking!”
But even if I weren’t kidding – which I am (come on, people, haven’t you heard of ear plugs?) – the fact is that I simply haven’t carved out the time to do it. I have, though, found some ways to organize my time so that I work more efficiently.
I’d like to talk about that this week, for in taking care of Mama, it has worked out that I am less worried about the things I can’t control, like T.S.! I can just do my best. That’s all any of us can do.
In closing, I’ll leave you with a few of my favorite pics taken over the past 2 weeks. I’d love to hear how you and your family are doing, too.
Here’s my daughter and me at Pip’s First Confession. Yes, I confess I have been a bad blogger! Oh, readership – all 20 of you – forgive me!
Here’s Rex, the kids, and little Miss L chilling out on a weekend night before a typical Saturday sleepover.
And here we have one of my favorite moments from our snow getaway last weekend. The kids had been disappointed that our cabin wasn’t covered in white, but the very next morning, we woke up to just enough flakes to enjoy some delicious sample tasting and a sled run down the hill.
Life with T.S. can feel far from perfect, folk, but I promise you that the more you live in the moment, the more you’ll look beyond a few annoying tics and cherish the friendships, the love and the smiles. A few extra snowflakes? That’s just icing on the cake.
Until next time, hug that ticker of yours today!
Andrea
Happily Ticked Off 