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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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Chicago, Summer Camp and More

So Miss Adelia and I both left our kids with sitters and enjoyed a lovely meal in Hollywood. We felt very fancy with our big Diet Cokes and yummy Italian food. We ate on the patio with the warm breeze blowing. I did not once think about anything gluten free. “Bring on the dinner roles with the olive oil,” was my motto. It was delcious.

The show? Oy. Christie Brinkley is gorgeous. She’s actually quite charming and even funny. But she can’t sing. I mean, not at all. I wanted to like her. I really did. But I didn’t. Everyone else in the cast, from John O’Hurley to Amra-Faye Wright were spectacular. The dancing was superb and the costumes were incredible. But the story was dark. It was somber. And with all the evil in the world, I just didn’t get it.

You could say that I have been so down about Tourettes that my opinion was swayed. But the truth is, I wasn’t. I get annoyed when I’m in the same room with Stink for hours on end and get no break, but the moment I leave, I’m fine. And frankly, I’m getting less annoyed even with Stink. After all, he’s the one with this disorder, not me. I’m so unbelievably proud of his resilience and amazing attitude. I might as well have the same. He rocks!

In closing, I called a camp for summer. I was thinking about enrolling him and Pip in musical theatre. I mentioned that he has T.S.. Their response was that it’s fine if he comes with an aid. “An aid? He doesn’t even have an I.E.P., though,” I balked. “I just told you about his diagnosis so you wouldn’t freak out about a few tics during rehearsal.” Their response, “It’s fine! Really! As long as none of those behaviors that come with T.S. accompany your camper.”

Um… Huh. Head scratch head scratch WHAT????

I get it on some levels. They don’t have time to accomodate special needs kids who don’t come with special needs support.

On another level, though, it’s frustrating. I lose either way. If I don’t say he has T.S., they’re going to wonder why he’s occasionally coughing or churping during “How Do You Solve a Problem Like Maria?” or adding individual neck rolls to “Doe a Deer”.  If I inform them of his condition, though, and he does something very Stink like – very sneaky and appropriate for any average NT 9 year old  – he’s automatically singled out as “The Tourettes Kid.”

Forget that racket! I spoke to my hubby and we’re enrolling our kids in the YMCA this summer. I don’t have the energy for this crap. Once he gets his tics dialed and we’re off this study, I’ll go back to fighting dipshxxxts.

For now, I want to enjoy my summer, tics and all, and hopefully not have to sit through Christy Brinkley’s musical acts. Hell, she doesn’t have T.S. and should have been kicked out of that play. Funny how things work sometimes, eh?

Good night everyone! Love you all and am praying for your beautiful babies!

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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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Not Going Great

Hi all –

Here is a quick update just to report that things are not going great. Call it an upswing in tics. Call it State Testing. Call it the Intuiv or the placebo or just simply a new detergent that is setting his TS butt on fire, the itches triggering a ripple effect of bad behavior that has me scratching my head and drinking more Two Buck Chuck than I’d care to admit.

Bottom line: Things suck around here.

But I’m not in despair.

Just tired.

I’m trusting the process and not bowing out of this UCLA study. I’m looking at it like clarity. For those of you struggling with this, please know you aren’t alone. I am rooting for you all and this too shall pass.

In love and exhaustion – Andrea

PS: Note to yourselves: It is indeed possible to have your child hit the button on a friend’s garage remote control so many times that it burns out the motor and causes said friend’s father to be locked out of the house. This can all indeed happen within a 30 minute period when you are naively picking up gluten free bread from Trader Joes. Because, you know, going gluten free just might be the ticket to all your trials and tribulations. Ahem………………….

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The Best Day Ever Considering It Was the Worst Day

The quick update for you all is that yes, today was not such a great day at first. But then it was awesome.

I went to therapy! Wooo hoo! And while many wouldn’t think this is so fabulous, nor would they brag about it, I love it. It means I’m taking care of myself. For one hour, I am fortunate enough to have insurance to cover my venting and rambling to someone who will listen without judgement.

Sam is awesome. With his penchant for hipster jeans and rockabilly Hawaiian shirts, he’s best described as a drug free Jimmy Buffet. He doesn’t take me too seriously, which means I don’t take myself too seriously, and within moments of my diatribe about tics, elitist casting directors who came to my house yesterday to “consider” us for a J.C. Penny shoot only to not say “please” or “thank you”, and let’s not forget neurotic whining about my book and sleep issues, he’s laughing.

This makes me laugh.

And then he checks his calendar. “Hey, you’ll be here next week also, right?”

“Yup,” I responded back.

“According to my notes, you are due for your period that week, so I’ll just assume that you’ll be back to bitch mode.”

I’m so glad he makes $100/hour to give me crap.

In addition to therapeuTIC goodness, I sold some things on Ebay. I visited a very cool theatre when I dropped off Miss L to her Annie Jr. rehearsal. My husband decided to give me his extra flying miles to go to New York for a weekend (anyone out there near NY and want to meet for coffee?) and I was assigned the CHICAGO review at the Pantages Theatre for next week by my local paper editor.

I don’t get paid for the article, but I get two orchestra seats at $85/pop to watch Christi Brinkley channel Roxie Hart.

Hooray for the turnaround!

* Photo taken of the kids on Sunday. God bless good friends, bbq, and CA sunshine.

Love you all. Life can be awesome so don’t forget to find the magic.

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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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Tics Never So Bad – OY

A dear friend asked me today something today. He commented that not being able to change tics, but instead change yourself, made sense. Why, then, would I be so bothered by an uptick (no pun intended) in tics?

I could probably give a long answer psychology wise on why this is so, but I am too tired tonight. Instead, let me ask you: Why do tics bug you so much? Is it you are afraid of your kid being teased? Does it bring back bad memories of childhood for you?

As for Stink, we went from 1 pill to 2 via the UCLA study. Not only is he focusing horribly, but his tics are through the roof. My hubby, who never notices them, asked me tonight, “How are you doing? I mean, Stink’s tics are beyond out of control.”

I wasn’t sure whether to laugh or cry. I was so happy he actually FINALLY saw what I see every single day.

But I’m a bit disconcerted that, well, it’s likely that Stink has either been given a sugar pill placebo or he just isn’t reacting well to the meds.

Moral of story? Mamas, go with your guts. If you don’t want to do meds, don’t. For me, I don’t think we will stick to meds long term, but my gut says we need to finish this to its conclusion. So off we go.

Wish us luck. And I will wish the same for you. Love you all.

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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.