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Monthly Archives: June 2012

Week 4 – Intuniv

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.

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What Makes Us Tic

I’ve been doing a lot of soul searching lately. It’s dawned on me that since my kids were born almost ten years ago (Stink will be 10 in January and Pip will be 8 in two weeks) I have done nothing but run. I run to ballet practice. I run to the market. I run to Ebay ten dollars worth of used ballet shoes. I run to cook up that $4.00 batch of chicken I just got at the market.

There’s nothing wrong with running – it’s part of the mothering experience. And truthfully, I just love the energy of it. (It’s this joy that has me running here to blog!)

But in running, I also am hiding. In particular, I have tried hiding from Tourettes.

Maybe you have done this also?

Maybe you have told yourself, “If I just find the solution to these damn tics all will be okay.”

For me, the miracle finally came.

Stink got some medication. And his tics are at an all time low. (Though they are up 30% the past few days due to computers, yukky food, excitement, etc.) And now, with things okay in Stink’s world – with that magic pill and the answers to all I wanted to make everything okay – I’m starting to unravel.

Why is that?

Am I someone who is wired toward anxiety or fear? Do I need chaos to feel okay?

The truth is, it’s neither of the above.

It’s starting to dawn on me that life itself is nuts. This isn’t good or bad. It just is. People are weird. We’re weird. Nothing goes as we want it to. There is no fix. There might be a magic pill to calm down tics, but there isn’t a magic pill for life. All the booze, pills, exercise, money and running isn’t going to save us from things we can’t control.

And this is why I’m a bit unnerved. Now that I know Stink is going to be okay (he always was) it’s ME who needs to grow up and take life on life’s terms.

* My mom is getting older

* Some day my childhood home will be sold

* Family dynamics aren’t as Little House on the Prairie close as I’d like them to be

* My career isn’t what I had hoped it would be

* My husband is only able to relate to me in the way he can relate to me – he isn’t Prince Charming who can magically read my mind

* My kids won’t be babies forever

Instead of hiding behind the tics, or running, or blaming others or blaming myself, or holding on to my own childhood that is no longer there to comfort me and keep me safe, it’s time to let go. It’s time to just feel whatever I feel. Happiness at the dog across the street who rushes over to my doorstep every day for a treat.

Joy at watching my children sell beads in the kitchen for magical money and a kiss.

Gratitude that my husband makes a good enough living that I can sit at home on a Tuesday and type this post.

And absolute abject fear and terror of how much things are going to change in the next ten years.

Perhaps, like me, you don’t like fear. It’s, um, scary! You consider Zoloft. You drink too much wine at night. You work yourself to death to, there’s that word again, runnnnnnn from it.

But guess what? At some point, you’re going to come to the same realization I have that you can run but you can’t hide. And that horrifically tragic moment wonderfully life altering experience when you slam right into that wall and slide down and you’re exhausted and tired and hurt and angry you have the chance to do something wonderful, you can either:

1. Grab onto your ego and put on your make-up and fake it that all is okay and buy that fancy home in the hills and live a fake life with dotted “i’s” and crossed “t’s” where nothing is unorderly and all is accounted for in your bank account and living room or…

2. You can just go out into the world and show it your scars. You could be shocked at the response you get. Sure, there might be a few, “Oh, God, you really look like crap. Just get it together and grow up and buy retail and suck it up like the rest of us… with good hair please…” But more than likely, your battle wounds will be a beacon to others fighting the same battle. “Hey! I have been there also! Check out my knee scrapes! Got them from too much praying and digging in the garden with my kids and this one? Dropping to the ground at Good Will to score that train table before that other bitch grabbed it.”

I’m tired of “shoulds.” (I’m shoulding all over myself.) In allowing myself just to accept the ever-changing tides of life, I can float on the waves rather than drown in the longing that it were something else. It’s the wanting – this unrealistic wishing of what can’t be – that’s been the key to my discontent. Life won’t be better when my husband changes or my childhood home isn’t sold or I get an amazing job or this book is done. Life is okay now – just as it is.

I’m ready now to face this. It’s a scary journey, but one that is going to open up a whole new life of peace and joy. But for a while, there just might be some tears. And really, I’m okay with that. Discomfort sucks, but I’m brave enough to try if you are. Pema Chodron is someone I have recently discovered. My Christian friends might tell me to pick up a Bible for comfort – and I do. But I’m also picking up her book. It’ll arrive in the mail soon and I’m excited to read it.

You can check a bit of her out here if you’d like!

http://www.youtube.com/watch?v=A4slnjvGjP4

Until then, I’m off to be at peace with life on life’s terms. Wish me luck!

Writing Class, Writing Job, Intuniv Update and More!

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!

Almost Week 3 of Intuiv – Even Better

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

 

Week 2 Intuniv – So Far, So Good

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.

 

Get Yourself a Parlor

Everyone needs rest in their lives. That is my motto this week. When I don’t get it, I’m a sad bag of weary bones.

Do you have a place in your home that is just for you? If not, would you consider creating some space – any space – even if it’s just the car?

My space is my livingroom. I have a lot of very old furniture in there – some from pre-marriage days and some from my lovely sister-in-law. One piece is from an ex-drug addict boss that I scored for a paycheck’s worth of woes.

My latest addition? My neighbor’s couch. Found on the street. In the video below, I try to tell you that tale when I’m sadly interrupted by feral children. Such is life, including my very bad hair. Why do I only post videos of me after working out when I’m less than stellar. Must be because I am a lazy turd very confident in who I am as a woman.[youtube=http://www.youtube.com/watch?

http://www.youtube.com/watch?v=3jlJQvF2guU&list=UU7pCFMeJ6X2orNoFbxjJeDg&index=1&feature=plcp

Placebo, Part 2

I know my last post was incredibly long and fact filled, but I thought I’d ramble a bit more anyway about our final UCLA experience. They called it the “un-blinding” of Stink, so on that note, let the Gospel music roll in. Can you hear that organ?

“Amazing drugs, how unsweet the sound

That didn’t save a wretch like me

Enter chirps and mouth blows… healing we did not find

We were blind… and now we see… Placebo!”

Yes, for 6 weeks, I have been driving back and forth to UCLA for a fake pill. The good doctor sat with me in his office and told me, in all seriousness, that there is no way that this pill could have caused Stink to have the upswing in tics that he had. It could have been anything from the waxing and waning of tics to state testing to his loss of teeth to a possible strep infection that went untreated.

Now despite my sometimes hysterical sounding writing, I can promise you that in serious situations I can totally fake my way into seeming together. I don’t argue. I don’t get emotional. I don’t shake my fists like a furry arm pit haired hippy and blame air freshener and L.A. smog for the cause of my kid’s neck jerks. (Though truthfully, sometimes air freshener and other scents can indeed trigger tics. My point? I don’t say this at office visits at top research universities. I wear deoderant and sometimes even brush my hair.)

I didn’t push my agenda and issue with the placebo. Dr. McCracken isn’t a world renown T.S. expert for advocating alternative treatment for children. He treats from the medical/pharmaceutical end. I get it. And he has done amazing work for a lot of people. I might continue to work with him for the next 8 weeks and give the actual drug – Intuniv – a go for Stink. I wouldn’t be doing it for tics. (Though Dr. McCracken has said on at least six occasions that this drug has been known to reduce tics by 50%. Yeah!) I’d be giving this medication a go to improve Stink’s focus and impulsivity. If my smart boy can pass all his classes while dreaming of Mario and playing virtual handball during fractions, imagine what he is capable of if he could just zone in on what was being spoken about? It could be the difference between Harvard and Clown College.

Like many delicate arguments in marriage, this is one of those situations that I’m simply not going to be right about. Dr. McCracken will go on believing that the placebo could never cause an upswing in tics. I will go on knowing that the moment I took my kid off those damn pills his tics reduced by 80%. State testing being over? No longer some unknown virus in his system? Some cosmic coincidence that the moment he goes off the pills his tics reduce? I think not.

The overall message of this post: Don’t throw out amazing professionals just because they have a different opinion than you do. They might be your best allies in the future. But don’t think that you, as a parent, are wrong just because the medical community feels differently. I say this not from a place of denial – my son could obviously use some help with focus. I make the previous statement from experience and hopefully wisdom: the medical community does not know everything. They might work with the brain, but they don’t work with the soul. And somewhere, in between, we have balance.

I’ll keep you posted. You do the same for me!

PS: This in from Adelia’s last comment. I thought it worth posting here. “Before conducting human trials for drugs, pharmaceutical companies are often fully aware of many of the side effects of the products they’re testing. So, for instance, if a drug is known to cause dizziness and nausea, the drug company running the test may want the placebo to have the same side effects. And they have an explanation for this. They say the placebo should mimic the drug being tested so that the control group of the experiment will have side effects similar to the placebo group. Without that, they claim, the results of a blind study would be compromised.” (HealthierTalk.com)

* Photo from a few weeks back. Summer time is here!