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Michelle Obama’s… I Mean Stink’s… Speech

Andrea Frazer

In this year of elections, I am proud to say that Stink’s teacher and myself have nominated my kid as Chair Speaker of 4th Grade for Tourette Syndrome Awareness.

It is happening at 1PM on Friday. Both his papa and I, despite being on polar opposites of the poli-TIC-al fence, will put aside our different opinions in support of our grand candidate.

There will be hugs. There will be cheers. And yes, there will be wine coffee following.

That’s all I have for today.

* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts to the NJ Center or guest blog here? Email me at LifeHappins@Gmail.com
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It Finally Happened – The Mean Kid Tellith Stink To Stop Ticking

Andrea Frazer

Tonight I had to write the letter below to Stink’s teacher. Apparently, this is the week of honest correspondence. Spineless salespeople…. ignorant gradeschoolers… at least I knew Stink’s teacher would be receptive.

From our first conversation last year in the halls – before she was even Stink’s teacher – she demonstrated not only humor and smarts but an emotional intelligence that I’d been dreaming of in an educator.

Still, those fears I had when he was diagnosed five years ago – worries that included being teased and harrassed for noises and twitches he couldn’t control – were finally being realized. It was a somber moment.

At the same time, it was liberating. Because although I wished I didn’t have to deal with this, I wasn’t scared. And my son wasn’t too upset either. Sad an annoyed? Yes. But broken? Hardly. The past five years had been spent concentating on Stink’s strength, not his weaknesses. No fourth grader was going to take him down.

So with strength (I fake it sometimes) and lack of fear (anxiety will hit later when I’m PMSing or out of Zoloft or Day 6 of my no nightly glass of vino quest) I give you the letter which all mothers of tickers worry about writing:

Hi –

So I hate to be THAT mom, but I was saying prayers with Stink tonight and he mentioned feeling sad about some kid named Mama Never Taught Me Empathy I’m a Cry For Help who always asks about his tics.Stink doesn’t care if people ask, and he gives the standard, “Oh, I have Tourettes and make tics. I can’t help it!” and that usually suffices.

But apparently this kid keeps saying, “You CAN help it. You CAN help your T.S..” He will move out of line if he’s next to Stink and say he does not want to stand next to him because of the sounds.

There’s 3 things going on in my opinion:

1. Of COURSE people are going to be annoyed sometimes. As a mom, I get annoyed myself but…

2. It’s an opportunity for kids to be more accepting of others.

3. Stink needs to educate the class on his condition. It might make his tics calm down.

Is there any way, sooner than later, my son can have the floor and just give an update to the class on what it is to have T.S..? I can get a video about it if that will help.

Or maybe Stink can talk about it in a PLC? (TRANSLATION for my blog readers: PLC stands for “Peaceful Learning Circle”. My kids go to a fabulous developmental hippy co-op amazing public charter school. They call teachers by first names. They used to have an assistant T.A. who wore mismatched socks named who sported a fro and went by “ChaChi”. I can’t make this stuff up. Now back to the letter to Stink’s teacher.)

I feel bad hitting you with all this on the 3rd week of school. I just want to nip the “social” stuff in the bud now so I can really focus on, well, getting Stink to FOCUS and be the best he can be.

Thank you –

Andrea (and Rex!)

My question for you readers: So what would you do? No, kicking some kid to Mars is not an option. Stink doesn’t want meds for his tics. He says he feels sad, but not enough for more medicine. He thinks this kid just needs to deal with it. Do you? I see both sides, honestly, but most of all, I’m happy my kid is confident in himself. Still… where do I make choices for him where his social life is at stake? You know, like being invited to a party by an ignorant dumb ass who only hangs out with ignorant dumbasses? Oh, wait…

Note to self: Cancel anti-ticking drug order. And congrats on 5 pounds lost! 10 more to go!

Here are my babies at our cabin this weekend. They cracked us up by surprising us with Twin Day outfits in their suitcase. Of course they had no tooth brushes, but who cares? They’ll be old with no teeth but like each other. Let’s see if Ignoramous STOP TICKING bully boy from Stink’s class can boast that. Well, maybe the no teeth part. If he keeps it up, someone will knock his front chopper out one day. I won’t cry will fake compassion for him.

* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts to the NJ Center or guest blog here? Email me at LifeHappins@Gmail.com
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A Cure For Tics! Really! And Pigs Fly! It’s True! (Well, They Sell Cure-Alls!)

Andrea Frazer

I am steaming mad tonight, and it’s not that Stink’s tics are pretty non-stop. Quite the contrary, I am really taking on my mantra: “If you can’t fix the tics, fix yourself.” I am exercising, relaxing, off the wine  (in an attempt to drop 15 pounds) and just counting my blessings.

I’m mad about the response I received from an advertiser who will remain nameless. I will not reveal if this douche bag advertiser sold magic pills, e-books, supplements or therapies for tics. I will just say that they claim to stop twitches and sounds for a fee that’s more than a cup of coffee but less than a pair of Lucky Jeans. (Evasive enough? Good. Let’s continue.)

The ad promises it will work 100% and that their own kid suffered from tics and they can END! YOUR! KID’S! TICS! ALSO! It’s that easy! Wow!!!!!!!!!!!!

I wrote them and said I would do a review for them in exchange for a free product. I was upfront that I could not spend more $ on something that I wasn’t sure worked. “But if it’s all it claims to be,” I wrote, “Then I will shout it from the rooftops and spread the word throughout Facebook and the New Jersey Center for Tourette Syndrome.”

I would run a contest to get him more traffic! It would be a win-win for my son, his wallet, and nervous parents everywhere.

I received a quick response where I was asked for my site stats. I sent him a copy of them. (Believe me – I’m not exactly getting a million hits/day.)

He wrote back 24 hours later with this response. What you see is unedited. The first paragraph is in relation to my question about tic elimination.

His response

From my own experience and from feedback I get from people I would say the following numbers apply:

50% total elimination – it can take anywhere from a week (! but these are rare cases) to 3-4 months

30% significant reduction – and I mean noticeable and significant!

20% no significant change. Although many people say the kids are less hyper and calmer. And happier.

I think you would understand why i am hesitant to commit to your proposal…

Do I send you the eBook, wait for you 2-3 months and then unfortunately your case belongs to the 20% or even 30% and I get a nasty or no review?
My reputation could be damaged unfairly…

YES – i know! The way the sales page appears is as if this is the miracle cure. Sorry ….. so does every other product. 
My website consultant suggested and created it. (the testimonials are real by the way !!!)

If you want I can have (someone) Paypal you some money so it will be a paid post and you can just review the product and mention its existence.
You can also run a contest for a free copy.

I am not doubting your integrity as a writer – i would not want it any other way!
All I am saying is for you to understand my situation and realize that marketing and reality are not always on the same page.

He goes on to say a few more things, then ends it with, “God Bless.”

Where my head spins off its shoulders My thoughts

This person is willing to falsely lead frantic parents down a primrose path and then tell us that we are stupid for believing him since ads are never real. Translation: “We are complete and total frauds, but we need cash. PS: Jesus Loves You.”

My response

Hi Devil Spawn –
 
No problem. I totally appreciate you getting back to me.
 
I suppose I’m disappointed because, even if your marketing director said to do it a certain way, it’s kind of false advertising. Either it works 100% or it doesn’t. Your ad is appealing to people like me who, in desperate situations, will do anything to make their children’s lives better.
 
I think it would be more honorable to tell the truth: This works x amount of times and in x amount of cases. But that doesn’t sell as much product.
 
I don’t mean to sound high-handed. But it’s disappointing.
 
For the record, I would NEVER repeat an email from you or discredit you in any way. I’m not into character defamation of any kind. But I will tell my readers to be aware of ads that promote cure-alls.
 
I would ask you to humbly search your heart and consider revising your statements in your ads. It would add sooooo much validity to you.
 
Again, thanks for your honesty in your letter back. I wish you the very best.
(Note to my own readers: I am only repeating some of their email and gave no names, so I stand by my word.)
Their response

I agree !!!!
In an ideal world…..

I’ll tell you what:
Show me ONE ad/website/print that gives percentages and I will pay to have my site revised and rewritten!!!!

God Bless!

My response back

I do understand. I really do. But this isn’t a cleaning product – it’s placing false hope for a real disorder that affects real people. I understand that you need to make money, but there are some things where it’s more important to do the right thing. THAT’s what God blesses. It’s not a catch phrase or an email tag line. 
 
With all due respect, you should be really ashamed of yourself.
His response back
I’ll never know. I will delete it without looking at it. I can’t waste any more time on this. As the Bible says, “Don’t throw pearl to swine.”
God Bless!!!!!!!!!!!!!!!!!!!!!!!!!!!
* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts? Email me at LifeHappins@Gmail.com and I’ll personally introduce you to the editor. Let’s get Happily Ticked Off and do something to support each other!
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Bleh bleh and bleh. You’re welcome.

Andrea Frazer

I cut and pasted a real email to my apparently not real husband who can’t be human since tics don’t bug him at all. See below. Perhaps you can relate? And if you can’t, tell me how you are so un-nerved by vocals? Inquiring minds want to know.

Hi –

Hope work is going okay today. I printed out the code for the WiFi – thanks! It’s working.

WARNING: Repeat Whine Ahead but it’s better than real wine at 12PM so deal with it:

I’m suddenly feeling very very sad due to all these squeaks. Oh, well. I will get through this ticky time. I will. It’s just been worse than normal.

Because I can hear your voice in my brain, let me say that yes, I accept he has T.S..

I accept we did EVERYTHING we could do (still are) and he’s doing waaaay better than he would be without the Intuniv.

I accept that even I’m in a better place than I was last year or before that.

But I do not accept that my emotions occasionally go into the toilet when he tics.

I can’t fix tics, but how do I fix feeling yukky about them? How do I feel okay? I am praying about it and giving it to God.

What’s the answer? That sometimes life is just hard and that, like the cycle of the tics, I’ll have good and bad days?

I just wish I could handle the tics like Stink does – where they don’t bug him and it’s just a part of who he is. I’m just not there.

On that note, the house is clean and we’ll have a lovely meal. Because, you know, I rock.

Love you –

Me

PS: Just got off the scale and am 8 pounds over my happy weight and that, frankly, blows.

PSS: But not as much as tics.

* Photo taken of Miss L, Pip and Stink at one of their thrice weekly playdates this summer. Normally I don’t allow dogs at the table, but I made an exception for this one.

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And…They’re Back!

Andrea Frazer

Ladies and gentlemen, we have had two weeks of non-stop excitement from birthday parties to sleepovers to Wii time to pool dates and, lo and behold, the tics are back!

Introducing, the squeaky gulp. It is happiest when interrupting Stink’s sentences at a rate of 20 times/minute, but it will make its appearance during quiet times, reading, chewing and teeth brushing.

While it is doing its best to unnerve me – and trust me – it’s doing a great job of it – I am hanging in there. I make no apologies for having my husband read bedtime stories to my little dude, wear ear plugs when needed, or just go for a walk (or 10) when I find myself losing it.

I refer to episodes like these as “Silver Bullet Denied”, for while I had hoped that the Intuniv would just blast these suckers away all together, alas, such is not the case. It is what is.

God, grant me the serenity to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

And really, although I’m entitled to my pity party, I have so much to be grateful for. Just three hours earlier, my friend of 40 years asked me to visit her in the hospital.

“What can I bring you?” I asked, happy to finally have a chance to visit since her diagnosis two weeks ago.

“Bring your sharpest scissors,” she asked.

“Um… why?” I asked, not thinking she was planning on doing anything drastic, but it sounded odd.

“You’re giving me a haircut,” she said. “My hair will be gone by the weekend anyway, so at least get it off my shoulders. It’s so dry. I hate the clumps.”

“No problem!” I said.

One hour later, and a few snips that lasted five minutes due to her increasing chemo-induced headaches, she proudly sported a very short flapper hair cut.

“You’re like the Betty Paige of Leukemia,” I quipped.

She smiled and said she was tired, but asked me to come back Thursday.

I said I would and started to hug her goodbye.

She braced herself against the bed, and then I realized, “Oh, yeah. I can’t hug her. Her immune system is still too compromised. You’d think the surgical mask on my face would remind me. But no. Like thinking I can cure T.S., I’m a slow learner.”

Moms and dads, a cancer ward is not fun, but if my friend can name her chemo pumps Penelope and Kujo and dance on good days, we can get through T.S.. She will survive this – I know she will – and so will we! And so will our kids!

Andrea

Photo above my daughter’s favorite ballerina from her tea party. Bella is pure joy, and if you think she’s bugged one ounce by the squeaky tic, you would be wrong! She just dances on her little fat paws and encourages tu tu girls everywhere to squeak with joy.

 

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Stay a Julia Child at Heart

Andrea Frazer

As the summer winds to a close, so does my ability to think past one minute intervals. I spend my beloved “free days” (days the kids go to friends’ homes due to trades) house cleaning, Ebaying, food shopping and hitting thrift stores. My soul is restless. I’ve barely written at all.

I can’t wait for the kids to leave the house for some much-needed structure beginning Thursday! But I know I’ll be sad as well. I love their little spirits so much. Their joy for life is infectious.

As I always say, joy and character far outweigh a few tics.

I don’t know about you, but I’m pretty sure Julia Child would agree! If she were still alive, I’d invite her into my meager kitchen to whip up an amazing gluten free caesin free meal. I’m not sure that would be possible, given she cooks with more pasta and butter than we buy supplements around this joint. But in my fantasy, she’d have a twinkle in her eye, pass me glass of red, and – as she says in this video, “Bring on the roasted potatoes!… I love to smell something cooking… makes me feel at home!”

I just want to hug her. On days I’m a bit down or fear the future, I’d just lay my noggin on her bad polyester shirted shoulder. She’d pat my back with that big paw of a hand she has. She’d cluck cluck that life isn’t always perfect. Then hand me a duck as big as my head and tell me it’s time to get cooking.

I hope you enjoy this video as much as I do. I literally cried when I first saw it. There’s something about her complete ease with herself that makes me feel that the world is okay.

And your son or daughter with the tics? Trust me… you keep on loving on them and they will be fine. Julia Child couldn’t cook until her mid forties, so don’t think you will find you peace with this nutty disorder in a day. But you will. And one day, how fun will it be for us to gather around your table and have a glass of wine together?

Bring on the roasted potatoes! Bring on Julia!

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How Is Everyone Doing?

Andrea Frazer

Well, the moment I write “tics are gone” they always come back. But they are still at a minimum and I am very happy with the Intuniv. Stink is still Stink: happy and charming and sometimes a bit toooo silly. But I’ll take that over a flatlined robot.

I don’t know about you all, but I am finally hitting the wall with this summer fun non-sense. If I do one more load of dishes, or fold anymore laundry, only to see it pile up again in the course of one hour, I will lose my brain.

My kids have gotten excessively argumentative and hyper. They need structure. Apparently there really can be too much of a good thing in terms of swimming, friends and hang out time. It’s time for a schedule!

As I type this, 4 kids are running through the house. I normally take them to the pool or the Y or even Grandma’s house. Today? I’m cleaning. My house looks like a giant petri dish.

In closing, I am pretty stoked that I have air condition in this weather! And while I’d kill for a house that has more shelving and a prettier kitchen, I’m pretty darn grateful for what I do have. Pandora music, some fresh coffee, health insurance and a family I love so much I could die? I’ll take it.

What’s new with you?

My fave new song to go with housecleaning!

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Tics Gone Again!

Andrea Frazer

3 things to report:

1. Tics are totally gone again. Amazing and so happy about that!

2. We met James Durbin at a local concert.

3. Refer to #2!

As you can tell from the photo, he was quite nervous as he was about to perform. Me? I’m clearly kind of happy about it. Stink and Pip? It basically went like this:

Stink:  “Mom, I’m playing pool!”

Me: “But don’t you want to take a pic with James Durbin?”

Stink: “After I’m done playing pool.”

Pip: “He is NOT your boyfriend.”

Me: “You little Shhhhts! Get over here!”

So they did. Ah, I was happy. More to come!

For the record, I really don’t have a crush on James Durbin. For gluten-free sake, he’s literally half my age. I’m just happy to see a kid who didn’t have it easy growing up and yet is so comfortable with himself. He is just such a rock star – literally. And while his heavy metal music is not my thing, his spirit and tenacity make him my little American Idol! And his voice? Wow. Can’t wait to see him cast in a Broadway show one day. (Hopefully my show!) Just goes to prove that T.S. or not, our kids can be who they are meant to be! Yeah, James!

In case you don’t know who this talent is, check out his single which he opened up the set with. “It’s time to see you stand up, let me see your hands up!”

And this is for Christy. Ahem. My public service good deed is done for the day. My slogan? Helping housewives everywhere discover new talent every day.

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Tics Better, Chaos, Organization, Etc.

Andrea Frazer

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

Andrea Frazer

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!