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I Used To Be Such a Good Blogger…

Andrea Frazer

…But a full-time job with kids home at all summer has put a serious damper on my style. I think I need a degree in project management to keep track of their schedules and my husband’s wacky work schedule. Not to mention my kids need sustenance. Seriously, mamas, kids need attention every day. EVERY DAY. Can you even believe it?

A big shout out to all my friends who have circled the wagon this past month to take my kids to such wonderful places as the beach, downtown Los Angeles for Mexican dresses, art openings, Swedish festivals, bowling, parties, sleepovers and more. I don’t even know if any of you read this blog, but if you do, you know who you are. I am so very grateful.

To answer the last blog’s question of ‘Would you tell a camp counselor if your kid had T.S.?’ I did indeed tell the camp director. She didn’t flinch. She didn’t even twitch – and not because she doesn’t have T.S.. She simply didn’t react because, apparently, I’m not the only mom in the world who has a child with special needs.

I was immediately put at ease, especially with her closing statement. “I am glad you said something,” she offered kindly, “Because if some kid acted poorly toward him, I’d want to know that he could advocate for himself or talk to his counselor.”

“My son not only advocates for his tics, he also advocates for seconds on popsicles, extra pool time and extra room on stage to take his final bow,” I said, giving her a small glimpse into his over-the-top personality.

She smiled, “He’ll have to join in line behind the other boys,” she said. “This is a public park n’ rec. That kind of behavior is par for the course.”

One week later, my son came home in tears.

“Oh, no,” I said, pulling him into my arms. “What’s got you so upset?”

“I don’t know,” he sniffled, sitting on my lap. I almost gasped at how heavy he was, but I decided breathing was overrated. How long would my almost sixth grader want to cuddle with me? I bent my head next to his mop of curl, enjoying the warmth of his bear paws on my knees.  I took a deep breath, was reminded he needed to wear Roll On with more frequency, and snuggled close. “You must know what’s wrong,” I nudged him.

“Well, I guess I do. But I just don’t want to say.”

“Oh, no,” I though. He’d been lightly hiccupping all week, likely due to chlorine overload. I was ready for his tale of woes about the kid at the snack bar who asked him to keep his noises to himself.

“Did some kid tease you?” I asked?

He immediately bristled and pulled away. “No! What would they do that?”

“Stupid me!” I wanted to respond. Instead I went with, “Then what’s the problem?”

“Well, you’re working so hard, and it costs money to go, so I feel bad saying this, but…” he burst into tears. “I’m not a fan of the great outdoors! Oh, Mama, I am a fan of the great indoors!”

I stifled my laughter, gave him a huge, promised him we’d turn on the air condition and watch TV the following week while his sister sweated her ass off with the other campers. “And lots of snacks,” he advised. “And lots of snacks.” Problem solved.

Here are a few images of what Stink considers to be ideal activity. Thank God he’s estimated to be SIX FOOT NINE. No joke. If not, he’d be bigger than a Whale at McDonalds.

dom 1 dom 3 dom 4 dom 5

 

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Supplements, Acupuncture and Dr. Sims/Stacks

Andrea Frazer

It’s been a long time since I’ve posted, so I checked out what you all are interested in most. Turns out I get the most clicks for:

* Supplements

* Acupuncture – does it work?

* Dr. Sims and Dr. Stacks – dentists who claim to fix T.S. with mouthpieces

Clearly, the “how to cure tics” theme is huge for many of you. It was a big theme for me in the beginning, too.

Cut to almost eight years later, it’s not that big of a thing anymore.  I don’t say this to sound cold, heartless or un-empathetic to those of you still in the pit of “This sucks” despair. But I say it because of one big reason:

I couldn’t fix it.

Nope. All the acupuncture, all the supplements, all the homeopathic visits that caused fighting with my hubby over finances. All the money spent on the best food out there… it didn’t stop the tics.

For us, it went like this: Mild to medium, back to mild and now kind of mediumish.

What’s he on supplement wise now? Nothing.

What’s he eating? Gluten free, no exceptions (except for one week of camp this summer. Wish us luck.)

Did we ever try the dentist? Um, we can’t even afford braces right now, let alone a trip across the country to get a mouthpiece for tics.

Here’s what works for us: Lots of laughter, lots of good sleep, lots of good food, minimal video games, maximum acceptance.

Should you try other things? YES! Many of my friends have really helped their kids through all the items I mentioned above, but T.S. is not a one size fits all program. For us, we found just keeping the stress down was best. If his tics go back up, we’ll look into supplements again, along with medication if needed.

I just wanted to say that if you’re out there and fearing for your kid, please know that while you might not be able to stop those tics right away, you can do a HELL of a lot by encouraging him or her to be the best human being they can be, tics be damned.

That’s all I have for tonight.

Oh, and this photo of Stink who lights me up like no other!

Good night!

dominic

 

 

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Follow Happily Ticked Off on Facebook!

Andrea Frazer

ts image

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.

Follow me here! Feel free to write me, also, at HappilyTickedOff@Gmail.com

Talk at you soon – and can’t wait to connect.

acupuncture, Tourettes

Acupuncture to the Rescue: Tics Reduced!

Andrea Frazer

Good news! This post is not as long as Sunday’s “War And Peace” expo Stink is seeing relief already from one treatment of acupuncture yesterday. I am so relieved. He came home calmer, with a 75% reduction in vocals. He still sported major eye rolling and head shakes/head butts, but his acupuncturist says it’ll take a week or so to really get suckers subdued.

I’m lucky as my son’s healer (and the source of my new found hope) is the incredibly talented Martina Eberhard who just happens to live across the street from me. She practices out of a darling 3 bedroom, wood floored, 1950’s cottage home. Her treatment room smells like heaven. It’s about about as clean and professional as any first-rate office park salon. In fact, it’s easier to relax in as the whole house is flooded with a personal warmth. Parking structure and cement? No thanks. I’ll take curbside service and a brick patio.

A few years back, she had come up with a treatment plan and supplements that she was convinced would really give Stink 90% relief. (Video and post here.)We ended up not seeing her plan to fruition because, despite only 20% of her treatment being executed, we saw such drastic improvement. Stink was tired of doing it, also, so we took a break.

Um, the above statement? It’s kind of akin to a bipolar person going off their meds because they “feel so much better!” Suddenly there are freak outs, manic screaming, and all around “What just happened?” despair. Pretty stupid, but let’s not berate ourselves with the past, shall we? Moving on.

As fate would have it, just when I started to lose my brain with tics, Martina mentioned that she saw this article on a teen Miss America who had severe T.S. and was “cured” through acupuncture. The formulas and treatment used on her were the same as Martina recommended for Stink two years ago, inspiring her even more to work on Stink again!

So, with my heart in my hands, tears in my eyes, I said “Yes.”

Full Disclosure: Martina’s rates are more than reasonable for her high level of skills. Check out the above video – she is sticking needles into my kids head and shins! She knows what she’s doing. That said, because of my professional writing background, we are trading service for service. I only mention this because if trades were not an option, I’d pay anyway. She’s that much of a healer. Eberhard did not pay for this review.

Big Take Away: Where there’s a will there’s a way, and sometimes we must get creative to make things happen. We all have gifts – why not use them to benefit one another?

Stink will begin acupuncture three days a week, then taper to two, then one.

Last night we had an impromptu bbq in the back yard. My sweet hubby cooked for us all, including Miss L and Martina. Connection and friendship out trump tics every time.

acu 2

I’ll keep you posted! Meanwhile, is something working for you?

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Tourettes

Finding the Right School

Andrea Frazer

kids

When Stink was first diagnosed with Tourettes, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was five years younger than me, but acted like a stern sixty year old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted.

“Yes, but he didn’t exactly hold his pencil correctly, and with thirty kids in the classroom and one teacher, we don’t have a lot of room for extra attention.”

“Why in the world, then, with that many children, would I want to spend 10k/year on your school?” I asked, incredulous.

“For the Christian environment,” was her clipped response.

“Oh, yeah, I’m really feeling the love here!” was my retort.

So off I went, enrolling him instead in a local charter school. We’re all different religions and sexualities and neuro make-ups and all kids are honored and get this: It’s free and the teacher student ratio is 22 to 1. Jesus would be proud!

My advice to you, today, is to be sure that the school your son or daughter is in does not reflect what you, as their parent, want. Your child is not supposed to live your dreams. They are supposed to live theirs. And that means being supported in a place that best fits their personality, disposition and academic requirements.

I love my charter school! I have the best communities of moms and dads I could ever ask for. (Literally, there are 15 parents at any given time I can call and say “Please pick up my child… I’m running late!” and boom – DONE. Community is everything. And not just any community. A community you are comfortable in.

Here’s a response from a reader here, Leanne, who spoke in my last post about the importance of talking to your child’s school about any issues they might have in order to best ensure their educational success.

Letter

Yes, my son is on Intuniv for tics.  2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine).  My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv.  We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like.  Horrible. 

He waxes and wanes.  I was scared to death of him starting middle school.  I truly was (yes public school).  So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall.  I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. 

I had a friend go with me.  I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics.  I also had the name of his neurologist and prescriber and phone numbers on there.  That way if they had any questions, they could ask them as well.  I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible.  I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics.  Anything you can do to put his mind at ease, your mind at ease.  The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed.  There are several things schools can and have to do to help, like a 504 plan I think.  There is a lot about school on http://tsa-usa.org/    

He does have loud vocals waxing and waning.  Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar.  He “disguises” it as well with his words in sentences going up and down in volume.  I was petrified of middle school for him.  But I did all I could BEFORE he got there which I think is huge.  Your mind can take you down some dark, scary roads that don’t even turn out to be true.  I think if you met with middle school staff your mind would be put at ease.  This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you.  I will answer any questions any time.

* Photo taken 3 years ago. These kids are still best friends. So much of that has to do with the school. It’s a school that advocates for diversity and togetherness with no bullying policy. I AM SO GRATEFUL!

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

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Empathe TIC – My Kid

Andrea Frazer

Vacations are great. Not only do they force you to slow down, but in doing so, you observe and feel things you might not otherwise with the hustle and bustle of real life.

One thing that has surfaced came from my little Stink the other day. I told him something he couldn’t do (after he and his sister’s Lord of the Flies excess experience at the beach house) and he started to cry.

I hugged him, explained why he couldn’t do it, then went on to pack for our mountain getaway. (Surf and Turf in one week… I know, life is tough… stay focused.)

Within moments a very sullen boy came into the room. I was prepared to hear a dissertation on why an extra six hour, 2 minutes and 37 seconds of electronics are not only okay but good for him, but instead he just sputtered, “Mama, I think 3 pills are too much for me.” He was fighting tears.

I sat down on his Scooby Doo bed and took him in my arms.

“Why do you say that?” I asked.

“Because I keep getting upset,” he said.

My kid is a con-artist. He can say anything to get his way, but I could tell this time was different. I dug deeper.

“You mean, because you can’t have extra treats like at the beach house or more computer time?” I offered.

“No. I mean… I just feel more sad… It’s like I have these mini cries… a lot… over little things.”

I was floored. I wasn’t surprised at his feelings – just yesterday my husband remarked that Stink seemed a bit too muted. A friend, a few weeks back, remarked that he seemed super mellow. Topanga T, during our Saturday get together, commented that he seemed a bit too robotic.

And yet, check out my previous post and video – he seems okay! I figured the pills just needed a few weeks to titrate.

But after talking to Stink a few days ago, my mama bear instinct kicked in. 3 pills really are too much for this kid. We need to back it back down to 2. Minimal tics are great. It’s been awesome to feed him crud and know he’s not going to spin like a tilt-a-wheel, and his focus is awesome, but at what cost? So we can then put him on antidepressants to combat the downer effect? This makes no sense.

We are going to back it down to 2, but first we need to talk to Dr. McCracken on Monday after our trip.

“Stink, we will cut back for sure. But we can’t do it before UCLA. Do you think you’ll be able to manage your mini-cries until then?”

He looked up, teary, and then smiled. “I think some extra computer time could really help.”

CON ARTIST.

“Fine,” I said. “A little bit only.”

SUCKER.

Take away for moms and dads thinking about starting meds for tics or focus: If you can hold out until your kid is at the age where they really know their bodies and can speak about the effects, it’s super helpful. Sure, a few years of hyper activity or trying out diet and supplement techniques are a pain (but yes, they really help in managing symptoms) but it’s a great baseline. If you start meds at 4, when they are 9, how will you know what their true personalities are?

* Butt coverage: Some folk absolutely need meds due to extreme ADHD or extreme tics. Of course, there is nothing wrong with that. It’s simply my theory for parents of kids who have medium to mild tics/focus/hyperactivity. And trust me: nothing helps build a parents’ tool box of character, patience, grace and forgiveness than learning to accept and nurture a child who isn’t a perfect cookie cutter kid.

Until next time, hug that ticker of yours today!

You can now follow me on Twitter: @AndreaFrazer. (Watch out – I might start following 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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Stink Turns 9, Mario Turns 0

Andrea Frazer

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?

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Acupuncture Update #3 and Meditation

Andrea Frazer

Stink was a bit head shaky, twitchy on Thursday. A session with Martina cleared this right up.

At first, Stink would complain about acupuncture. It was not the needles, but the time he had to take out of his day to sit still, that bugged him.

But now, he loves it. He is especially fond of Thursday’s sessions when he lays in Mama and Papa’s bed and hears this awesome meditation CD. In fact, the CD relaxes him so much, he and his sister go to sleep with it at night. It even worked in knocking him and his best buddy out in fifteen minutes on Saturday night.

This was after playing the Wii, seeing a movie, and running around like hellions in the backyard.

Just saying, if my kid and his 9 year old friend can go from this…

…to this

…it might be worth a shot for your little tickers.

Meditation CDs and acupuncture aren’t miracle cures, but for us, they are working.

More later!