Tag: Tics

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Almost Week 3 of Intuiv – Even Better

Andrea Frazer

About a year ago, when I was crying to a family member about Stink’s upswing in tics and focus issues, I received some advice that felt very truthful to me. I never forgot it. I was struggling with the idea of medication for Stink. Her exact words were, “If you don’t medicate him, he very well might try to medicate himself one day.”

I certainly don’t think all kids need drugs, nor would Stink necessarily be that kid in Vegas boozing and drugging and humping everything in sight. But her words did give me pause. How many people, who are emotionally unstable, sedate themselves with wine? How many artists, unable to calm down their crazy brains, use weed to ease their nerves?

I was never 100% convinced medication was where I needed to go, and I gave it a lot of time before trying it. Her words were a great kick start to thinking about them, though.

And… after a few weeks on some actual medication… I am so happy to report that we are seeing really great results from the Intuniv. After bumping up the dosage from 1 – 2 pills, we have seen very little to no ticking. It’s like the edge is off Stink’s personality, but he’s far from subdued. He is not a robot. He is not lethargic or tired. He is just Stink, minus tics, plus a bit more grown up. He is a bit less impulsive, more interested in what others have to say, less argumentative and more able to control his outbursts. Overall, he’s a true pleasure to be around. It’s like we never went through that awful tic phase – it’s just that good.

Of course the moment I type this all hell will break loose and I’ll rue my words and spit on the screen.

But for now, I’m so happy about this progress! Even my formal father-in-law, who never says “boo” about anything my kids do, commented to my husband that Stink wasn’t making any sounds or noises. It was lovely!

Moral of the story: After lots of trials and errors, it’s possible to find a shoe that fits. Here’s to continued success with the Intuniv for us, and I have all fingers and toes crossed that the same goes for you.

What are you all trying this summer for your kids? Have any of you ever heard of the GAPS diet? With its root in digestive health (Gut and Psychology Syndrome) my bloggy friend, Raymond, has amazing reports of success with this diet. If you’re interested, I can post more soon.

Tonight I write. I have been lagging with my book. Sometimes I just wonder if this is something worth pursuing. It’s not like I have all the answers for this crazy syndrome. And I don’t always have peace about it. I feel akin to a yoga instructor who teaches people all day how to breathe and relax but then goes home, downs 2 bottles of wine and screams at her kids. I don’t think of myself as a role model for T.S. enlightenment. But then again, maybe that’s what people want: To know they aren’t alone in not feeling serenity all the time. Just my rambling. Would love to hear your thoughts, too.

Until next time, Andrea

 

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Keeping Our Kids Safe – A Balancing Act

Andrea Frazer

Today I went hiking with my kids after school with Miss L. At one point we came to a metal pipe that was raised about three feet over the water.

“Stand next to me in case I fall,” Pid advised. “But don’t get too close!” she said, before starting the first foot of a four foot trek across the rusty tube.

For the first few steps she was fine. She struggled a bit, but she didn’t come close to falling. Each time she righted herself back to a strong, balanced position.

It was only when her little body was aligned with mine that she started to really waver. She flopped once to the right and then instinctively fell toward the left where my arm steadied her. Her hand hovered over mine for the rest of her short walk across.

This was such an analogy for life. How often do we stoically face life alone, but when someone warm and comforting is near, we allow ourselves the vulnerability to fall?

While there is nothing wrong with allowing others to bolster us, it makes me think of a parenting struggle I often have. Like that walk my daughter took, I want my kids to know I’m around for them. I want to be their safe landing. But I’m of the ilk that parenting means raising our kids to be independent. If I walk too close to them all the time, they won’t have the chance to learn from their falls. Or even more to the point, they won’t have the chance to right themselves before the plunge happens. They won’t have the opportunity to know what they are truly capable on their own.

A discussion about this very thing is happening in the comment section of a previous blog. Take a look and join the thread if you’d like.

In closing, I’ll leave you with a quote from Lisa. She is a woman in her thirties that has T.S.. She has gone on to be quite successful. I’ll post some pieces of a q and a I had with her tomorrow. Just some of her wisdom comes right here:

“It’s the kids who have everything handed to them and are sheltered from failures that have the hardest time as an adult…It’s about loving and supporting your kid and giving them confidence and the ability to be comfortable in their own skin. There is no such thing as perfection so why do we all work so hard trying to achieve something that doesn’t exist? In the words of my biochem professor….’Don’t go hunting zebras in Scott County (Iowa)….chances are it’s horses…'”

And with that, I’m going to saddle up for the night. Until tomorrow, I’m thinking and praying for you all. I’d love to hear your thoughts on any of these subjects, so feel free to comment!

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Summer Lovin’, Had Me a Blast

Andrea Frazer

I don’t know about you, but we’re thinking about summer around these here parts. For me, summer means working on my book, Ebaying a bit, seeing family and friends at lazy summer bbqs, sprinklers, sleeping in and new growth.

With the insane running around my family sometimes does, despite our best efforts to stay in the moment, summer also means time to be still. It means enjoying each of our family members regardless of tics, age, disability or bad hair days. Life is best when it’s savored.

My kids, more than anyone, get that. On Sunday, as if to say, “Mom, we’ve had enough of the mad cap dashing around town,” they found a spot under our large oak tree and broke out a game of Uno. And there they stayed.

For two blessed hours.

My daughter could care less that my son was sputtering and clicking away. All she cared about was whipping his butt at cards.

He was a gracious loser, too.

Until tomorrow, enjoy those kids of yours, tics and all. Tics tend to vanish when they become adults, but these precious moments of childhood are so brief.

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Still Awful, Prognosis for Upswing

Andrea Frazer

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!

Andrea Frazer

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

Andrea Frazer

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

Andrea Frazer

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…

Andrea Frazer

…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

Andrea Frazer

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

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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

Andrea Frazer

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.