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Tics Better, Chaos, Organization, Etc.

The tics are much better.

In an ever-growing understand I have about tics (which is basically, whatever you think is going to set them off the opposite happens) Stink had a big time sleepover the day his tics were at their peak. He came back, after 24 hours of food indulgences and electronics and lack of sleep, with almost zero tics.

It is clear: He is allergic to me.

That’s all I have to say right now about tics.

On another note, the kids refuse to give up their shared living space. What I’d love, in Ideal Andrea Land, is this:

Instead, in the reality of a budget and time constraints, they live with mismatched furniture.

With a tree (that is missing its branches) right in the center of their bedroom. It looks like I got a cardboard cut out on sale from some Spooky Town Halloween Closeout Floor Special Sale. Oh, wait, that is where I got that tree! DUH!

Similar to the problem I’m having cropping the photo above to right itself up, I’m dealing with, yet again, wanting things picture perfect and having to  settle with what really is.

What I won’t have for them is a 20k room make over.

What I will have for them? A cleaner space that doesn’t resemble a thrift store vomiting 1969 all over the paint stained hard wood floors.

Like my motto for tics,  I must take their “magic forest” wacky bedroom situation, and:

* Accept the part of the mess I cannot change

* Change the part I can

* And have the wisdom to know the difference

My wisdom for the day? My son will never be able to keep a fitted sheet on his mattress. I will be happy if he can just keep a regular one over his pee stained mattress (which I recently put up on crates to have more space underneath! Wooo hoo! Cheap and fun fix!)

I can get some metal baskets for his stuffed animals and my friend can hang them on hooks on his wall – once that wall is cleaned off and patched!

EVERYTHING gets cleared off the top of dressers. (including what you see above)

The old fan is being removed (woops, it’s “rainbow goodness” the kids love is going to “break accidentally” the day they start school to make room for new lights.

In with curtains!

Out with the idea of repainting the whole room.

In with Topanga T agreeing to paint trees like the one you see below!

Out with the idea that they will have matching furniture at this time!

In with the fact that my kids are learning basic organizational skills with the most basic of pieces.

In with relighting their spooky tree and fixing the branches!

Out with wishing for stuff that we just afford right now but in with having the ability to make it adorable anyway! In with their love for what is, not what isn’t. When can I learn that? WHEN? How about I start today. And every day, start again when I fail?

Why am I in such a fix up mode? Is it because I need something for my spinning brain to focus on? YES! And I’m okay with that.

I’ll keep you updated on the progress. It’s fun!

What about you? Any of you into reorganizing because it just feels good? And who else loves Pinterest?

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And Even MOOOORRREEE Tarzans

Meh meh and meh.

I’m irritated.

And then I have to remember:

1. We’ve been on vacation for over one week.

2. Lots of screen time.

3. Lots of junk food.

4. Lots of cholorine filled swimming pools.

5. Less sleep.

6. More go go go!

7. Today we ran out of his Intuniv.

There’s no magic bullet on this Tourettes ride.

NONE.

But we’re still better than we were last year. And we had a great vacation as a family. And, in the end, this too shall pass.

Hope you are all well!

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Empathe TIC – My Kid

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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Vacation All I Ever Wanted

I met the girls for lunch today at California Pizza Kitchen to plan our big beach house extravaganza. I have to tell you how nice it was to not sweat Stink’s lunch choice: pepperoni pizza and chocolate milk. Had he not been on the Intuniv – which are still keeping his tics to a minimum – I’d never let him eat that stuff. Not only did gluten and dairy make him hyper, but it increased twitches ten fold.

Some out there might say that it would be better to just stick with diet if the diet work. Why bother with meds? Instead of messing with a kid’s brain chemistry, just keep the bad stuff 100% out of his system!

I can’t disagree with this opinion, which is why I held off on the Intuniv for so long.  I firmly believe there are alternative ways of healing tics and providing kids with better focus. The GAPS diet is just one example of that. (I will cut and paste parts of an email I received from my pen pal on this diet on my next post.)

The problem I have with doing everything via diet and supplements (acupuncture or cranial sacral massage or Brain Balance and on and on…) is expense. I just can’t sink the kind of cash I’d like to into alternative stuff right now that may work, but may not.

I never thought I’d type the above statement. NEVER. But as a parent, I’ve tried really hard to be open to new things. I have tried to balance not just what is best for Stink and my family in a perfect world, but what is going to work for them in the real world. For now, that means meds is our sweet spot. We still eat super healthy, but some days we cheat. The tics are down by 80%. He can play computers without suffering vocal tics afterwards. It’s not like we’re going hog wild on electronics or junk food, but I feel like he can be a kid now and I’m not always saying no. “Yes, everyone else is eating pizza and coke. You can eat the gluten free noodles with water and here, have some organic grilled chicken I brought from home to spruce it up a bit. Dessert? Here’s some garbanzo beans. Smush ’em up. Just like ice-cream!”

As a mom who doesn’t want my kid to jump off a cliff just because the rest of the world is doing so, I am still relieved with our decision to mainline him a bit more. It feels right.

I’d love to continue this conversation with you all. Who is doing meds? Who is doing natural approaches? Who is doing nothing and figuring it all out still?

In closing, here is Stink and his sister, giving their thoughts on the Intuniv. Enjoy!

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Book Intro – Last Question

Thank you to everyone who posted feedback below. It’s invaluable. If any of you have any writing you need feedback on, don’t hesitate to ask me!

I have one more quick question: A friend of mine, who does not have a child with T.S. – and who has been reading my book from Intro thru Chapter 5 – said: “I love it, but it feels a bit like you’re giving away the whole book. I mean, don’t you want to keep some things a bit more hidden to hook people?”

She admitted she was unsure about this advice. She has given other notes she has been adamant about, so I trust her when she says she could go either way on that note.

In my opinion, since this book is geared a bit towards self-help, it seems that parents who are hurting might want an intro that immediately gives them hope. They might want to see, from the get go, that yes, marriage can be strained. Fears are normal. Pity parties happen – but there is relief!

Do you think I gave away too much? I mean, do you feel like you read the book or is it enough of an appetite wetter that you want more. Because trust me – there’s a heck of a lot I have not said. I’m just giving folk the overall theme: That T.S. isn’t the end of the world.

Thoughts? Sorry to be all about me the past 2 posts. I thank you all so much!

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My Book Intro – Feedback Please!

Thank you to everyone who has taken the time to write me emails or make a comment at this website. I’m glad I have been able to support you on this journey. You have certainly been there for me, too. I am so grateful!

As of today, Stink is still doing awesome on the Intuniv. On a scale of 1 – 1o, I’d give his tics a 2. If you didn’t know he had T.S., you might not suspect a thing. Of course, if he plays computers a lot one day, his eye tics are more prominent. It’s just the nature of the beast. It’s an easy fix: Live a balanced life.

On another note, I have completely rewritten the intro to my book. What started out as a self-help manual – how to fix tics – became more of a journey of enlightenment: If you can’t fix the tics, fix yourself.

I am hardly a seasoned Buddhist. I am a card-carrying control freak Christian who lives in L.A. and wants everything as perfect as the scripts I used to write. Fade in: Life is kooky and unpredictable, but by the end? Fade out: Happiness.

Like my dreams of a wild affair with George Clooney – no such luck.

I’m hoping you can read this intro and tell me what you think. Honestly. Are you disappointed it’s not a book on how to get rid of tics 100%? Because, really, that’s what I wanted to write. But it’s not what happened. But something marvelous happened along the way, and while I still struggle, I’m a better person because of it. I’m hoping my story can inspire others to live with uncertainty also.

Can you give me some feedback? I’d really appreciate it. (Note: It’s not grammatically correct. Ahem, Margaret.)

——————————————————————————————————————————INTRO—————————–

My son, Stink, was diagnosed with Tourette Syndrome when he was four. Named for Georges Gilles de la Tourette in 1885, Tourettes consists of both vocal and physical tics that wax and wane in nature and last up to one year.  Though my son’s symptoms were fairly mild, my reaction was nothing less than mind blowing despair. Thanks to media and fear inducing websites, I was utterly convinced my son would bark, hump busses and scream the F-Word during circle time.

Looking back, I can cluck-cluck like a mother hen and chortle about how dramatically I reacted. But I was freaked out. With only the worse case scenarios presented, how did I know that a Tourettes diagnosis would not be a curse (no pun intended) but instead the biggest gift a mother could be given? That gift was none other than one giant invitation to live life on life’s terms, not my own. It was an opportunity to let go of preconceived notions of a trouble-free childhood. Like bottle of soda, it was my chance to shake up a routinely packaged life and watch with wonder as new challenges exploded over my ideas, drowning my soul with the mess and stick of fear, anger, joy and excitement. I could finally relinquish fast held ideals about what I wanted for my son’s life, and instead nurture the life that he was supposed to live.

In the subconscious recesses of my mind, I knew that Tourettes was a present, but that didn’t keep me from spending the next five years looking for the gift receipt. “Thank you, but no thank you,” was my reply. “I appreciate the thought, but I’d like to return this for something else. Perhaps a good case of musical genius, a pitchers arm, or the ability to burp the Ave Maria.”

No such luck. Tourettes was here to stay. I didn’t have to like it, but I could learn to accept it. Taking a clue from the Serenity Prayer, I vowed to accept the tics I could not change, change the tics I could, and have the wisdom to know the difference. What choice did I have other than to stress out my marriage, drink away my sorrows, or curl up in a fetal position in the geranium bushes out front? With two out of three being checked off that list, it soon became apparent that my son’s disorder would remain regardless of my response to it.

Taking a clue from my son, whose reaction to his twitches were nothing shy of unadulterated acceptance (“I love my tics! They are part of me!”) it was clear that I would have to love them also. After all, if they didn’t bother my son, and they didn’t bother his friends, and they didn’t bother his sister, his father, his teachers, his grandparents, cousins and even that random group of Girl Scouts who heard him cough his way through the The Tooth Fairy movie, why should they bother me? Oh, that’s right. I was narcissist.

I could talk a big game about nurturing my child’s individuality, but truth be told, it was all about my own fragile ego. When my golden haired wonder boy would create marvelous stories or put together complicated puzzles in ten minutes or less, clearly it was due to my emotional and intellectual nurturing.  By the same token, every minor gulp, throat clear and tongue click were magnified as LOUD! RICOCHETING! EXPLOSIONS!  They boomed like ringing fog horns in my ears, taunting me that “My child’s life is O-V-E-R. AND IT’S ALL YOUR FAULT.” 

Tourettes might have been my son’s diagnosis, but co-dependence was clearly mine. My son’s symptoms, which were ever changing and often unpredictable, served as my emotional pendulum, which didn’t exactly create a peaceful living environment. “No shoulder shrugs or tongue clicks this week? Woo hoo! Let’s go to the library and join the book club and hear a talk about emperor and gentoo penguins!” …”Oh, crap. Head nods and humming? Let’s go to the library anyway because God dammit no T.S. is going to keep my kid from living a normal life but so help me if he gets one stare from some elitist botox mom whose kid is named after a French painter and has hair down to his designer jeans I will kick her to the North Pole so fast it will make a polar bear’s nuts freeze off.”

In retrospect, my reaction seemed extreme. But at the time, I was in pain. I was in shock over a syndrome I never saw coming. I was in grief over saying goodbye to the childhood I thought my son would have. And I was in denial about my ability to fix those tics. Tourettes might not have a cure, but that didn’t stop me from spending hours on the internet researching natural cures and remedies. And while a steady diet of magnesium and Epsom salt baths, coupled with a healthy diet, helped – it did not eradicate tics altogether. For an A – personality type like myself, nothing short of complete symptom elimination would do.

Insanity is often described as hitting your head against the wall over and over and expecting different results each time. I would agree with that definition, but I didn’t see myself as crazy. I saw myself as head heels in love with my son who would do anything to alleviate his ails. And it’s hardly like I was hitting my head against the wall the same way every time. I used a helmets to soften the blows. I went about slamming against the wall with different intensities. From homeopathic visits, dietary changes, acupuncture, neurologists, online ordered vitamins, support groups, books, habit reversal training, psychologists and psychiatrists and ultimately medication, I did everything in my power to “normalize” my son.

For a few weeks, even months at a time, my efforts seemed to pay off. Sure, I had bad hair from exhaustion and wearing all those helmets, but sometimes those tics would dissipate. But just when I’d let my guard down, they’d come back. And then the insanity of head banging would begin again. It was exhausting, and those bumps hurt, but until I got rid of those tics, I’d simply have to live with the pain.

Peda Chodron, a world renown Buddhist teacher who practices awakefulness, fearlessness, and gentleness, speaks often about the futile attempts of changing others to make oneself feel better. In a lecture entitled “This Lousy World” she reveals a list a mile long of things that annoy people to no end, including, but not limited to, the weather, the government and scent assaulting perfume. She then offers an analogy borrowed from another teacher: “It’s like being barefooted and walking across blazing hot sand or across cut glass or in a field with thorns and your feet are bare and you say, ‘Oh, this is really hurting. It’s terrible. It’s too sharp. It’s too painful. It’s too hot. Do I have a great idea! Everywhere I go, I am going to cover it with leather. And then it won’t hurt my feet anymore.’ That’s like saying, ‘I’m going to get rid of her and get rid of him and get the temperature right, and I’m going to ban perfume in the world and there will be nothing that bothers me anywhere. I am going to get rid of everything – including mosquitoes – that bothers me  anywhere the world, and then I will be a happy, content person.’”

Chodron could have replaced “him” and “her” and “mosquitoes” with the word “tic” and describe me 100%. In the aftermath of a devastating and unexpected diagnosis, I was too emotional to do the logical thing. I wasn’t able to see past my anguish and simply wrap leather around my feet – instead of the desert – and walk pain free across a desert of uncertainty.

If only someone out there could have told me what I know now: That Tourettes isn’t a death sentence. Not only would my son go on to defy any ridiculous stereotypes of what it means to have a tic disorder, but he would develop a soul far stronger and richer than I would have imagined. His ability to transcend his label was not due to thriving despite uncomfortable and dire circumstances, because my son never saw his disorder as tragic. Ticking was just a small facet of who he was. Instead of being Stink, the kid with Tourette Symptom, my son quickly showed me, and the world, that he was silly Stink, the kid who cracked jokes and loved karate and told fabulous stories and read everything he could get his hands on and made babies laugh and adored his sister and held my hand even in the third grade and was fearless in tumbling class and thought each one of his three biological grandmas were the most awesome women on the planet and oh, in addition to these endearing characteristics, he had Tourette Syndrome.

As a woman who had lived her entire life judging herself on what she did, instead of who she was, it took a long time for Stink’s philosophy to sink in. I still struggle with it, but like Chodron’s desert analogy, I have learned to accept that I can’t change the tics, but I can change myself. This includes letting go of expectations of what I want, and becoming more comfortable with what is. And some days, when he’s ticking a bit more than I’m comfortable with, I still freak out. But instead of judging myself for my reaction, I am willing to look at myself with compassion. Like my son’s face, that occasionally decides to eye roll or nose scrunch, I’m not perfect. I am perfectly human. And that is enough.

One of my favorite all time stories about special  needs is called “Welcome to Holland.” I took the liberty of adapting it for my experience with Tourettes.

One day a family of five boarded a plane headed for London. It was winter, which meant their luggage was filled with sweaters, thick wooly socks, mittens and scarves. The mother, who had dreamed of this vacation ever since she had children ten years prior, had planned out the entire trip in painstaking detail. They would have tea near Buckingham Palace after shopping at Harrods. They would tour the Tate and take a family Christmas  photo in front of Big Ben.  They would catch a show in the West End and go to mass at St. Paul’s.

After two hours on the plane, she looked over at her three children who had magically fallen asleep in the seats between herself and her handsome husband. She grabbed her mate’s strong hand, smiling at how perfectly everything had fallen into place.

At one point the captain’s voice streamed over the P.A. system.  “Ladies and Gentlemen, thank you for flying with us today. Due to some unexpected orders from the ground crew, this plane will no longer be flying to England. We will be changing directions entirely and landing in Africa. I can’t give you much information other than we cannot alter our course. You will have no choice but to make the best of the new arrangement. We’re not sure when we’ll be able to get you back home but you all seem like capable people who can wing it just fine. So, with that in mind, enjoy your new destination!”

Understandably, the mother was horrified at this news. Her husband remained cool and collected. She was both grateful, and horrified, that he wasn’t as freaked out as she was. How could he be so calm??! How could this enormous error happen? She wasn’t prepared for this abrupt switch of plans! This was not the way her dream vacation was supposed to go! The remainder of the flight was spent in abject misery as she ruminated, sulked, cried, moaned, hollered and generally cursed her fate.

By the time the plane landed, she was in quite a quandary. While this was one of the most unsettling experiences of her life, she also knew that falling apart would not help anyone. She’d have to be strong for the kids. She’d have lean on her husband when she could. But mostly, she’d have to lean on herself. She’d attempt to make the best of it. What choice did she have?

Once on the ground, the luggage never arrived. Everyone was sweltering in their woolen sweaters and itchy pants. What could she do? She borrowed a pair of scissors from a taxi driver and cut off the sleeves which they used as headbands. She turned their pants into shorts and hailed a taxi.

As this disheveled family of five crowded into a cab, the driver had a good laugh at their outfits. It turns out he spoke English and asked what happened. Against her normally private nature, she told him. He invited her family home to his home and she said yes. Clearly she needed help and couldn’t rely on herself anymore.

For the next two weeks, her family  did not shop. They did not tour museums. They did not eat at restaurants.

They ate home cooked meals around a plain wooden table with the taxi driver’s wife, her sisters, their kids and 20 other people with names  she could barely pronounce on Day 1 but by Day 20 knew as well as her own family’s names.

The kids ran around  barefoot  with children who didn’t speak their language but sure knew how to laugh.

Her husband helped reupholster  taxi driver’s car which earned the family some extra money which they turned around and used for goodbye feast when the time came to finally fly back home.

With bellies full of food and hearts full of gratitude, they said their tearful goodbyes and boarded the plane.  As they flew back, the mother couldn’t help but think that Africa was a far cry from England. It wasn’t as civilized. It wasn’t as comfortable. But it was exotic. It was different. And her family bonded more in that two-week unplanned adventure in an African village than they ever would have in pristine London hotel.

That mama, despite feeling like she was going to drown in despair, faked a good attitude until a true, authentic joy bubbled up from the pit of her soul. Despite signing up for it, she made the best of it and had an adventure of a lifetime.

You will, too. Grab your TS passport. TS is an adventure. It might seem scary, but let this book be your road map.

Let me be your tour guide.

It’s going to be a bumpy ride, but I promise you’ll land safely and have the time of your life.

Buckle your seatbelt. It’s time to Happily Tick Off.