Month: May 2013

If you don’t have a support group, find one. I am telling you, I have a group of 10 ladies that save my butt on a daily basis and make me laugh.

What I love is when a thread gets started – often when someone is in a dark/panicky moment – that reminds me of something I used to do. Perhaps you used to do it also, or still do it.

It involves Googling.

All hours of the night.

Crazy, mad Googling… hoping to find some miracle cure for twitches, tics and butt itches. The thing is, like a bad case of OCD, you are never satisfied with the results. You are always checking and re checking and often times, in the end, you find yourself worse than before you started, not to mention exhausted.

Here’s something one of my oldest Twitch and Bitch members advised to a newbie who was fearing the future for her 6 year old boy. It just made me laugh.

Kristine….STOP GOOGLING NOW!!! It really does nothing but make you more upset. Really…stop!!

You are in Australia right? Linda use to post here a lot…and correct me if I am wrong, Andrea..but I swear that her son was 13 yrs old…his tics never got worse and I thought that the last time she posted she said his friends asked if he even still had it..because they were so mild.

You will not ready stories like that online…..really…the good ones …..so shut the computer off! DO IT!

I couldn’t have said it better myself.

I am knee-deep in tic writing and sometimes I just need a break.

Before my mammoth adventure into book writing, I had started a collection of poems. “Just because” poems based on my kids and my zany family and fueled by love of anything Suess and Shel Silverstein.

I don’t purport to have the talent of either of these brilliant writers, but I hope to finish my collection of work non-the-less.

Here’s one I wrote. Would love to know what you are doing to keep yourself busy. Send me to your websites if you have one, even if it’s a business. I’d love know you more.

* The following poem was inspired by Stink. It’s a true story about something that happened to him in first grade. He still uses his pink Scooby Doo umbrella (or as we like to call it, his “parasol”) and our family couldn’t find him more weird and charming for it. God bless the independent thinkers of this earth!

Pink Umbrella

Mom said kids might laugh at me

And even cause a scuffle

If I took this umbrella to school with me

It’s pink (and it has a ruffle)

 “Honey,” she said, “You know I don’t care

But since you’re a boy… some kids might stare

So here’s a tip that is tried and true:

Be prepared for an answer that works for you.”

My mom’s pretty sharp so I thought of an answer

‘Bout why boys could wear pink and could sing and be dancers

So when Markus asked, “Dude, why are you carrying THAT?”

I said, “Friend, can’t you see that some girls don’t have hats?

I don’t want their hair-do’s to get wet in the rain

So I’ll walk them to class and they’ll never complain.”

And then while he stood there, kind of biting his lips

I decided to get one more thing in real quick

“My papa says girls like boys who can groove

So if I save their hair then one day you’ll see, Dude,

That I’ll have a date to any dance that I please”

And then something happened that you wouldn’t believe

At school the next day… under those rainy day showers

Marcus brought an umbrella – it was purple… with flowers

Today I was knee-deep in Chapter 9 out of 12 of my book. For reasons that have yet to be explained (other than sometimes stories take time, especially when you are living them) I am well on track to having this book done by the time my kids get out of school. 2 years to get 9 chapters done (including an intro) and 4 weeks to finish the last 4? Sure. Like tics, it just is what it is.

Despite feeling excitement about wrapping this sucker up, I am feeling a bit of fear and angst, too. “What if no one cares? What if the T.S. community likes it, but the rest of the ‘special needs’ mamas out there think I’m a whack job? What if instead of being supportive I come off like nothing but a whiny freak? And, the big question that begs for an answer: What if I can’t get an agent to back this?

Such normal doubts and fears accompany artists of any kind, which is what makes their journey so exciting. With it, luckily, comes confirmation. For me, this came in the form of an email from someone in my private Twitch and Group which, to sum it up, could be translated into 4 words: “I’m Losing My Shit.”

Her son’s vocals are currently out of control.

As it turns out last month, so were my son’s.

And, as I did, she told her kid to “Please Stop It Now!” and then went through a bottle of wine and, guess what, the tics are still there! – along with insane guilt and a bad headache. Who knew.

While I never want to see a fellow mother suffer, I saw this as having two meanings:

1. I am not a nut job. We all go thru rough times. Thank God we can express it to each other.
2. My book is on the right track. She called me right as I was finishing a chapter on the very subject.

Mamas out there, I want you to know that there’s a lot I don’t know. I don’t care if you ever buy a copy of my book, but buy this: YOU ARE NOT ALONE. YOU WILL GET THROUGH THIS. I SWEAR ON MY EVER TICKING KID HEART.

That promise comes guaranteed, signed and stamped by the production house of Andrea Has Been There And Has Not Been Committed to the Nut House.

Yet. (But like this book landing me a tour and an agent, let’s stay positive, shall we?)

Until next time, hug that ticker of yours today!

Just a quick check in to let you know we are all doing well. Stink’s tics have subsided – they always do – and I can’t say much of anything has changed other than we are being a bit stricter on his gluten/free dairy free diet as well as being more consistent with his sleep and supplements.

I have also been so busy myself that I haven’t really had time to obsess over it. We’ve had Mad Men themed teacher appreciation days, Mothers Day, family visiting from out of town, ballet and sports class…on and on.

I always say it, but when we can’t fix the tics, it’s so important to fix ourselves.

I love my life right now.

I love my home where we have kids over almost every day of the week.

I love my goofy son and my always practical and sensible daughter.

I love my kids’ school where my babies have formed amazing friendships, as have I. This is a truly Wonder Years time for us and I will forever be changed by the experience.

I love my husband who works so hard for us and is really growing as a father and friend.

I love that we have a neighborhood dog that pads across the street every day at 5 and barks to be let in.

I love that my mom went through a hard six months but is getting stronger every day.

I love that I’m starting to get that I’m not the fixer of the universe.

I am Andrea.

And some days, that is enough.

Love you all.

Tomorrow, May 8, the New Jersey Center for Tourette Syndrome is hosting a free webinar on tics and medication. I believe it’s not too late to sign up, and you can do so here. I will be listening in.

Meanwhile, I’m happy to say that my mood has greatly improved since last week. Tics are still the same – pretty steady stream of vocals – but I’ve relaxed about it. I have a few things that have really helped me:

1. Prayer I pray about it. All the time. It really relaxes me knowing there is a plan for my son. I pray before I pick him up from school. I pray while he’s ticking. I pray with him at prayer time. “Lord, grant me the serenity to accept the tics I can’t change, change the tics I can, and have the wisdom to know the difference.” I also am thanking God for all the incredible blessings in my life, this blog of support not withstanding. We are all in this together, ladies!

2. Focusing on My Kids’ Gifts Stink has started piano again and he’s really good at it. My daughter is becoming quite the artist. I just adore them.

3. Focusing on My Gifts I am keeping myself on a solid writing schedule. I can’t use tics as an excuse to not finally finish this book and get my other side work/newspaper reviews done!

4. Exercise I am walking every night with my husband. It is a chance for he and I to connect and it’s just lovely. Yesterday we took the kids with us. The evening was cool. Hand in hand, a family of 4, we walked through our tree lined residential street. To onlookers – with our long legs and interlinked arms – we must have looked like a Morman Melrose Place ad. All we were missing was the slow theme music and wind machines.

5. Singing Most important: I am singing. Yes, when my stinker is ticking and I want to scream STOP I start singing instead. It’s soft and low, but it’s hard to do a hum a tune and concentrate on tics at the same time – especially when it’s a prayer asking for peace. God is with me. Of course, Stink joins in.

Mom: Oh… Stinky Stink Stink the best in town… I love you even though your hair looks like a clown

Stink: Oh… Mommy, Mommy, you have my heart… even if you always eeeee eeeeeeeggggg fart.

In closing, I thought I’d show you the final results of the kids’ room, too. It’s been a tremendous weight off my shoulders to know we are not drowning in craft projects, laundry and random plastic toys from every trinket turning quarter machine in Los Angeles. I present you: The cleaned up room! Next, paint and a mural, curtains and loft beds. But all in due time!

NOTE: Notice that the beds are not perfectly made. The boxes on Stink’s desk aren’t totally shut. And the stuffed animals look like they are doing a Circus Circus ball pit orgy. But I’m fine with that! Like tic management for Stink (and acceptance for me) I’m not going for perfection. I’m going for reasonable expectations for peace. The kids need to keep up this room, not me. I’m happy with what we’ve got.

What about you? Where you at these days? Will I “see” any of you at the Webinar tomorrow? Andrea

Who doesn’t know that song? I was never a fan, which is why I sometimes don’t get the message. You know… STOP before you tell your husband every reason why he doesn’t do exactly what he’s supposed to do for you the moment he walks in the door after work and he’s toiled 10 hours and you’ve worked just as long and the kids are hungry and whiny and there’s no dinner made and you’re running on 5 hours of sleep and your kid is TICKING like a clock and you finally have had it UP TO HERE and you sit him down and, ever so nicely while the rice cooker steams for the millionth night in a row and… even though you are well aware that he can’t help his noises…. you have the following interchange:

Me: (Through gritted teeth): Sweetie, is it possible to breathe through that? I know you can’t help it, but it’s been almost a month. And, well, Mommy loves you so much but she just needs a break.

Stink: I can stop–

Me: Great! That would be great!

Stink: But you know it’s hard for me.

Me: I know. I do. But… well, I’m not a saint. After a while, I lose my patience. Maybe, just maybe… (Warning: Many of you saintly mothers, or people with tics yourself, might have issue with the following statement) … maybe we could consider getting you some meds to calm it down just a bit? Because, you know… it’s been kind of relentless.

Stink: How about I just take a Tic Tac?

Me: No. I’m… talking real pills.

Stink: (Big crocodile tears) But Mommy! If we did that, the tics would go away!

Me: In the name of Jesus and sales on Two Buck Chuck Hooray!  But why is that so bad?

Stink: Because it is how I was made!

Me: But I can’t be the only one who gets frustrated at the sounds at times. Doesn’t anyone ever get bugged in class?

Stink: Sometimes, but that’s their problem, not mine.

Me: (Standing on a very wobbly soap box and thinking “Thank God I have insurance when I ultimately break my spine more than I’m already doing”) But… it is in a way your problem if you can do something about it. (Oh my heavens, he’s crying I am the worst mother ever but I just keep on going because I’m EXHAUSTED) The drugs might just take a wee bit of edge off of them so I am a little less uptight and we’re never having this conversation again.

Stink: (After blowing his nose) Yeah, but why would I want to do something that would make me be just like everyone else… a brainless copycat who is boring and comes off drunk?

Me: (Flabbergasted) Dude, do you really like your tics that much? How is that possible?

Stink: (Shocked at his clueless mother) Because Jesus made me this way! (Then, excited) Hey, I know! Since I don’t have a problem with them but you do, why don’t YOU take the drugs!

Out of the mouth of babes.

And into my heart.

And now onto this blog.

NEVER again will I ever say something to my son. Especially after bedtime prayers later that night.

Me: Stink, I was thinking about what you said, and I want you to know how sorry I am.

Stink: About what?

He’s forgotten already? Doubtful, but generous.

Me: The tics! I’m sorry! I just get a bit nutty sometimes and this is not your issue. I’m thinking that I will continue to look up to God as a perfect model for me and I ask you to do that also. Perhaps by looking at God, you will be able to really forgive me because only He is perfect. And, man, I’m so far from it.

Stink gives me a huge hug.

Stink: Mommy, you are perfect! You are perfectly imperfect. Don’t you get it?

Squeak, squeak, gulp, goes my boy.

Inaudible sigh, invisible cringe, go I. But I say nothing.

Instead, I hug him close. He is practically the length of my body. His chest has broadened to the point where I can rest on it, so I do. Give him two years and he likely won’t want me to kiss him goodnight, let alone let me hold him. I’m saddened at this thought, but I brighten that perhaps by two years he’ll forget we ever had the earlier conversation.

He is so wise. Next to Jesus, Stink is my greatest teacher – perhaps because he embodies Jesus’ radical acceptance of flawed people more than anyone else I know.

Stink he loves me, yes I know, for he always tells me so.

As I fall asleep listening to his heart beats take over the sounds of his tics until there is nothing but quiet, I think of his wisdom about perfection and have more clarity than I’ve had all day. One word enters my mind and washes me in peace.  “Duh.”

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

* Photo of stop sign found on Flickr. Photo of my kid taken on the way home from Big Bear post mountain wind “I’m going to hurl” and pre “Oooh, we’re stopping for snacks? I feel better can I have some Nachos?”