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Meh.

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!

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!

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.

 

Had our appointment today with the great Dr. McCracken at UCLA. Stink is still thriving on meds. We are going to push the meds up to 3/day instead of just 2.

“Why” I asked. He’s doing so well.

“He is,” was the response, “But let’s be sure to find our ‘sweet spot’ and then we can just settle in. Call if there are any issues at all.”

“Like him not waking up from a dead sleep?” I eye balled him carefully.

“That won’t be an issue at all,” he promised. He said the worst thing Stink would do is faint or get super tired.

Ironically, Stink has not been all that exhausted with the first and second round of pills. Perhaps he was operating at a more “hyper” level than I even imagined. He’s not a kid to climb the walls, but clearly his brain was going going going and now he’s able to channel his energy so much better.

I think often of how much my own brain churns and spins. When I’m writing my blog, or writing stories for a living, I am at rest. But when my brain is left to roam and create characters out of their own wonky thought patterns, things feel more unwieldy. This is even more reason for major drugs for me a meditation practice. To slow down the thoughts and focus on what is really most important.

In closing, I took a few additional kids to UCLA with me today as I had promised to watch them. Their father, a talented artist, had a presentation to give to Disney on animation and drawing.

As the kids played handball out back, the dad and I had a long discussion in my living room about his day, as well as my book. I told him about an idea I had about “The Hero.” It dawned on me yesterday, during my writing day with Topanga T, that everyone loves watching adventure movies. It’s thrilling and enlightening and inspiring. But watching an adventure, and actually living one, are two different things.

Having a special needs kid is similar to going on a monumental adventure. All of us have to be heroes.

Heroes are not inherently brave. They don’t have all the answers. They are filled with fear and doubt as they chart out new territories and encounter dragons and monsters of the internal and external kind. What makes someone a hero is wanting to freak out and die but going through with it anyway because so much is at stake.

All of you, my dears, are heroes. Like Dorothy in the wizard of Oz, you’ve been called on an adventure you never expected to be on, but you’re there none the less. You can do this. And so can I.

Until next time, have fun on that Yellow Brick Road. Ah, hell, skip on down it if you want to.

Lions and tigers and bears – oh, my!

It’s been a crazy summer, and it’s only June 22. With my 2 children at a friend’s house all day, I’ve been inspired to get my act together around here. (Clearly they miss me, based on this photo posted on my Facebook wall from the dad in charge. It’s entitled “water play.” I love my daughter with her sword and the sprinklers. So classic childhood summer!)

I have a few updates to share with you before I keel over in hunger at my desk, so here goes:

1. Intuniv

I saw a small upswing in tics yesterday after our UCLA appointment some face grimacing and eye widening. A little bit of throat clearing. It’s all very minor, and I’m pretty sure it’s due to some cheating in diet (hello summer ice cream) as well as some extra computer/tv time. There’s been a lot of excitement over here with friends in and out of the house. It is what it is.

Takeaway: If your kid has T.S., no matter how awesome the meds are or the diet you have them on or the supplements or the gluten free bat pee mixed in their organic apple juice, they still might tic. Don’t beat yourself up.

2. Writing Work

I’m going back to freelance writing again. I got so lucky a few years back with my BabyCenter gig, as well as my Good Housekeeping gig. I wrote almost daily for 3 years. I got paid to sit at home and blog about my life.

I’m not saying I’m not a good writer, but I was also very fortunate to be in the right place at the right time. (Right place: my home office in my period stained underwear surrounded by Ebay items when the right email from the right networking group landed in my in-box.)

Times have changed. The economy has crashed. Writing from home is not as easy as it used to be, nor as lucrative. Still, I’ve updated my Linked In profile and am giving it a go. If anyone out there wants to be “friends” on Linked In and check out my profile, look me up! I am listed as Andrea Frazer. I’ll gladly look at yours also.

Takeaway: Time to make some money doing what I love most

3. Writing Class

I have taught 4 different online writing classes. I’ve hesitated about teaching anymore as I don’t want to mix business (money for writing classes) with pleasure (writing for you all.)

That said, I’ve had a few requests for teaching. Also, to be totally upfront, until I get a new corporate/national column, I’d like to ease up on Ebaying and make some money doing what I love best: Writing.

This class would focus on how to get paid writing. I’d be querying editors right along with you. We’d support each other and raise each other up. And, if at the end of the course, if you don’t get anything from the class, I’ll gladly refund the money. (But that won’t be an issue. I’ve never had complaints. Still, since you feel like my people, I have to offer that option so there are no feelings of weirdness!)

Info on the Class: You can find more info on the class here. I’d like to start Monday, July 2. (We can work around everyone’s summer schedule as this is an online course. No pressure on that.)

Takeaway: Take my class! We’ll know more about each other than we ever wanted to and get rich in the process! (Or just cut and paste my class into your Facebook profile and tell your friends. I’m ready to start generating money while I write and help others.)

As for the rest of my day, I’m off to write my book and clean my house and maybe, just maybe, eat. That’s a concept.

Hope you are all doing well yourselves!

I’m hesitant to type this, for whenever I say, “Tics are looking good!” two minutes later my kid is honking like a seal and spinning like an anorexic mama on a bike at the gym.

But so far, the Intuniv doesn’t seem to be having a bad effect on my son. He does seem more focused, and he doesn’t tic much. It’s lovely.

Yesterday, at UCLA, I looked Dr. McCracken in the eye and said that we had to agree to disagree on the placebo. “I know it messed him up,” I said.

He just looked at me and smiled.

“I”m not 100% convinced this new drug isn’t going to send my Stink over the edge.”

This time, he spoke. “You need to have a bit more confidence, I believe!”

After the past 2 months, the truth is, my confidence in anything that smacks of Western Medicine is shot. And yet, I do 100% believe the good doc has decent intentions. I believe he is actually really competent. I’m just scared to admit that this will work for my kid – the one I’ve been cooking gluten free/caesin free for… for five years. The one who I worry about food dyes and freak out about at birthday parties. “Will this piece of mermaid cake send him into a Tarzan head spin? Will this video game increase his eye rolls? If I don’t give him the opportunity to play video games am I an amazing earthy mama who wants my kid to unplug or am I turning him into a neurotic pre-teen who is going to land at his best friend’s house high on Diet Coke and lick Atari joy sticks?”

Life is not easy. Not for anyone. But I’m glad I have Stink in my life. And I’m quite sure you have some rockin’ tickers in your life also.

Yesterday, we went to a friends’ birthday party. It was clear that the tide is starting to turn. No more co-ed sleepovers. No more unconditional acceptance of all kids based on the mere fact that they are in another’s’ presence. Cliques are forming. Attitudes are brewing. Opinions are being formed.

“Stink, Z isn’t always going to be the same kid you thought she once was,” I told him on the car ride home.

His response, “I know! And really, it’s fine. I have so many friends. And Pip. And besides, I like our house better anyway. Let’s go to the beach tomorrow!”

And so we did.

We took my mom with us.

We saw dolphins that leapt in the air, unafraid to be who they were meant to be. And, seeing my son frolic along the shore with his sister and Miss L, not giving a rat’s butt about Z who changed her mind about him sleeping over, it was clear that he was happy with who he was also.

And for that, my friends, I’m pretty darn stoked.

Until next time – love you all!

* Photo above taken by the lovely Martina today at the beach. Not sure if I enjoyed the dolphins or the scenery below more! Miss L and Pip are going to give me heart attacks in five years.