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Happy New Year! Tic Resolutions?

skating

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.

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Still Awful, Prognosis for Upswing

Saw Dr. McCracken on Friday. He admitted Stink’s tics were waaaaay up.

Four possible scenarios according to him:

1. He’s allergic to the pills (they think it’s likely a placebo since his blood pressure is not lower nor is he tired.)

2. He’s just experiencing waxing

3. He might have had strep throat 3 weeks ago and we didn’t catch it. His immune system could be shot to pieces. Today I will take him to urgent care and have his throat swabbed. It’s happeneed before where he presents no symptoms but has strep. It’s always fun to explain this to the nurse on call: “My son needs a throat culture… why, no, he does not have a sore throat… no, I am not an overbearing mother who has lost her marbles but yes, I will sit on you and make you beg for air if you DON’T DO THIS RIGHT NOW I’VE BEEN LIVING WITH INSANE TICS FOR 2 WEEKS JUST DO IT!!!!!!!!!!

4. He’s hyped up from State Testing

I’m going with #1.

There is always the fifth scenario

5. He is allergic to everything I am giving him, including the smell of my armpits, the un-organic apples I am buying because it’s not in the budget right now to spend $199/week at Whole Foods, the bird that visits us every day is crapping on his head causing neck rolls and eye twitches via bird turd absorption, he is allergic to my bad jokes and awful hair that hasn’t been dyed in 7 weeks or he’s just in that pre-spike Tween upswing of tics and I’m going to have to live with vocal tics blasting out 40 times a minute (no joke) until he sprouts pubes and goes to college.

Oh, it’s all so exciting! Thank you to my mom who took Stink overnight last night. And thank you to Vickie who took my daughter overnight. And thank you to Topanga T and Big B who showed up at my home with their two bulldogs. They brought expensive IPA, grilled shrimp wrapped in bacon, shortbread cookies and chicken salad. While I took a half hour breahter at a thrift store after dropping off the kids, T cleaned up my house. My husband bought me Starbucks. I love everyone. I really do. Even the tics!

* I bring this quick edit to thank Ellen and Martina for taking both Pip and Stink on Friday night so I could go to dinner with Rex. And thank you to Daria for playing backup. God bless my community of amazing women. I swear, more frustrating than tics would be a world without strong women who have my back. Please get yourselves a strong group of people in your lives – in any form (church, temple, school, whatevvvvaaah) to get you through the rough times and to sing with during the good ones. I could say I’m lucky – and I am – but I also work pretty hard to sustain this. I’m there for others and they are there for me. It’s the best gift in this life ever.

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Tourette Syndrome Petition – Sign Up Please! Contest!

There are 2 ways you can help your child be amazing despite a few tics and twitches (or even major ones)

1. Concentrate on their gifts, not their weaknesses! Be funny! Laugh! Fake it til you make it! (Lots of exclamations here! It really works!)

2. Sign this petition to get more education and research out there to understand Tourette Syndrome. This will also help educate the public. Did you know that 1 out of 100 people are affected by T.S.? That’s a lot. Moms and Dads reading this blog, you have to know that you are not alone.

In closing, I’m off to UCLA today for our weekly drug study check up. I’m quite certain that this will be the one hour in an entire week where my kid isn’t ticking forty times/minute. Why will he not tic for the famous Dr. McCracken? Because life seems to work out like that sometimes. Which is fine. One more thing to laugh about later. If not, I’ll cry. And really, who needs that? Isn’t it so much better to not take ourselves so seriously?

Here’s your bloggy writer, Andrea, signing out. If I can wear curlers to Trader Joes, you can get through some tics this weekend. I promise!

PS: Sign that petition! Please! (I’ll even run a small contest. I’ll pick one name from the list of people who leave a comment here saying they’ve signed the petition. YOU, dear winner, will get a personally mailed note from me with a trinket from UCLA. Go go go!)

Andrea

My blogs are reposted weekly at the New Jersey Center for Tourette Syndrome. Other bloggers write there, too, so check in to this valuable resource when you can. If you want to write your own blog there, I will happily hook you up with my editor.

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Still the Same

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!

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And When They Could Not Get Worse…

…they did.

The worse tics ever today.

Ever.

I’m really trying not to be beside myself.

But I’m beside myself.

I don’t think (obviously) this UCLA study is going well at all. The best I can hope for is clarity at the end of this so I can have a better idea of how to parent this kid with (or without) meds.

Tonight, as luck would have it, Stink asked to pet a dog in front of our house. I have never seen this lady in my life. He walked away, after madly sputtering and eye rolling and squeaking and throat clearing, and she says, “Oh, does your son have Tourettes?”

“Yes,” I say.

“I know because my daughter has it. She’s 21 now.”

I was hoping to hear this great story about her – how she’s amazingly gifted and secure and has no problems at all.

“She can barely get through college. She has OCD, ADHD and her judgment is so bad she was recently arrested.”

Well that was helpful.

Folk, listen to me: We are not going down that path. I don’t care what my kid has or yours, we are going to fight like hell to accept the tics we can’t change, change the ones we can, and have the wisdom to know the difference. We are going to get good support systems going – for us and them – and we are going to nurture their spirit until their character far outweighs some impulse issues.

I don’t totally believe I can do this tonight. I’m pretty defeated right now. But guess what? I have another daughter to raise. I have a book to write. And my kid? He’s going to rock – regardless of this rough spot. We’re all going to look back one day and have a good laugh. Here’s to staying positive!

And here’s to a $40 gift card from hubby for Starbucks! If I’m not drinking wine, I’m drinking good java. Tonight is the night if there ever was one.

Stay close by, okay? We’re going to all learn from this! Andrea

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Finding the Right Grammar School for Your TS Kid… I mean, Mama

Stink didn’t get into Catholic school. “He doesn’t hold his pencil correctly,” I was told by the principal. I looked at the Jesus statue above her head, his hands all folded into prayer, and I swear I saw his middle finger go up at her.

Cut to five years later and yesterday’s post. I am BEYOND grateful to have my son at a school where he’s nurtured academically and developmentally. There is zero judgement. They go above and beyond to work with where we are at. They find him to be a riot – in a good way. His handwriting is still more atrocious than a serial killer on crack, but they foster what is important: He loves writing and reading. A few tics? Meh. No biggy. They support him. And, well, they support me.

Take this letter I just sent off to the principal. Where else, but my kid’s wonderful public charter school, could I just be myself and state it the way it is.

Hi Principal Kris –

Sorry for being out of it this morning. Stink is on a trial medication study and it’s really affected him so poorly. I’m pretty upset about it. Either it’s the placebo which, giving a kid who tics 10 grams of a sugar pill/day is pretty stupid, or it’s the meds. Either way, his tics are through the roof –insane even for him – and his focus is abysmal. So now I’m taking my kid every week to UCLA to increase duck quacking sounds and have him sent to the office for being more unfocused than a drunk sorority girl at an archery match on doobage.

 Sigh…

 That’s my rant for the day. I hate everyone.

Andrea

————————————

Are you all happy with your kid’s school?

Chin up, people! It’s going to be okay! (As I tell myself while I down my third cup of Yuban which, if you think about my frazzled premenstrual nerves, is about as dumbass as thinking my pink umbrella toting artist ticker was going to make it through 8 years of parochial school.)

As I tell my kids when I’m mad I can’t think straight and am trying to hold it together, HAVE A NICE DAY!

 

* Photo of Stink with his steady companion, Z. As of two weeks ago, they plan on going to highschool together and continuing their sleep over traditions. Um, not so much.

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Consequences and T.S. – The Big Pay Off

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?

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Where I’m Really Ticked Off – A Hideous Few Days

Stink started his medication last Thursday. At least we hope it’s medication. There’s a 50% chance he was given a placebo. Based on his disposition the past week, however, we’re pretty sure what he was given a form of FDA unapproved BOC.

Standing for Behavior Out of Control, this pill has caused the following side affects:

* Uber lack of focus causing his teacher to send him out of the classroom with the following words, “I’m Done.”

* Passive aggressive meltdown post-school at a friend’s house where he “forgets” his writing journal, proceeds to lock himself into the bathroom, later crawls out of the bathroom on his belly and hides under said friend’s bed when I tell him we’re leaving, forcing the same words out of my mouth as his teacher’s, “I’m Done.”

* Being sent to principal’s office the following afternoon after being warned twice to calm down in music class. Apparently sticking his face into another girl’s face unannounced and then sucking in air like a gaseous puffer fish was not appreciated

* Unprecendented (even for Stink) aruging with siblings and parents, sloppy dinner behavior and more defiance than an O.D.D. kid raised in a barn

I’d love to say this is all an effect of the medication, but given Guanfacine’s (Intuiv’s) main side affect is exhaustion, I’m thinking my son is truly just experiencing B.O.C. which is making me experience LMS – Lose My Sxxt Disorder.

It must be a full moon or something, because many mothers on my beloved Twitch and Bitch private complaint support board are experiencing the same thing.

After talking to the beloved Dr. McCracken at UCLA yesterday, he affirmed that while anything is possible, this upswing in Stink’s turd-like behavior is likely not due to meds. He says that “kids like Stink” go through periods of this where it’s like a trickle effect – one bad event leads to another.

I’d like a trickle event to happen in my life, too. I’d like one glass of vino to lead to two glasses to lead to three glasses followed by a one year stay at a bed and breakfast where I’m served Yuban for hours by a twenty two year old Italian named Roco.

Wish me luck.

PS: Turns out Stink had an awful sore throat last night. “Oh, good,” I thought. “Maybe that’s the reason his behavior was so bad.” No excuses, of course, but could be his impulse control was even less due to illness.

I kept him home today from school so he could rest. I can report, with nothing but pure relief, that he was on the mend by 10:30am! I mean, look at him taking his bath. It’s like a miracle happened! Praise God!

I. AM. DONE.