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Category Archives: Tourettes

Finding the Right School

kids

When Stink was first diagnosed with Tourettes, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was five years younger than me, but acted like a stern sixty year old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted.

“Yes, but he didn’t exactly hold his pencil correctly, and with thirty kids in the classroom and one teacher, we don’t have a lot of room for extra attention.”

“Why in the world, then, with that many children, would I want to spend 10k/year on your school?” I asked, incredulous.

“For the Christian environment,” was her clipped response.

“Oh, yeah, I’m really feeling the love here!” was my retort.

So off I went, enrolling him instead in a local charter school. We’re all different religions and sexualities and neuro make-ups and all kids are honored and get this: It’s free and the teacher student ratio is 22 to 1. Jesus would be proud!

My advice to you, today, is to be sure that the school your son or daughter is in does not reflect what you, as their parent, want. Your child is not supposed to live your dreams. They are supposed to live theirs. And that means being supported in a place that best fits their personality, disposition and academic requirements.

I love my charter school! I have the best communities of moms and dads I could ever ask for. (Literally, there are 15 parents at any given time I can call and say “Please pick up my child… I’m running late!” and boom – DONE. Community is everything. And not just any community. A community you are comfortable in.

Here’s a response from a reader here, Leanne, who spoke in my last post about the importance of talking to your child’s school about any issues they might have in order to best ensure their educational success.

Letter

Yes, my son is on Intuniv for tics.  2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine).  My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv.  We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like.  Horrible. 

He waxes and wanes.  I was scared to death of him starting middle school.  I truly was (yes public school).  So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall.  I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. 

I had a friend go with me.  I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics.  I also had the name of his neurologist and prescriber and phone numbers on there.  That way if they had any questions, they could ask them as well.  I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible.  I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics.  Anything you can do to put his mind at ease, your mind at ease.  The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed.  There are several things schools can and have to do to help, like a 504 plan I think.  There is a lot about school on http://tsa-usa.org/    

He does have loud vocals waxing and waning.  Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar.  He “disguises” it as well with his words in sentences going up and down in volume.  I was petrified of middle school for him.  But I did all I could BEFORE he got there which I think is huge.  Your mind can take you down some dark, scary roads that don’t even turn out to be true.  I think if you met with middle school staff your mind would be put at ease.  This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you.  I will answer any questions any time.

* Photo taken 3 years ago. These kids are still best friends. So much of that has to do with the school. It’s a school that advocates for diversity and togetherness with no bullying policy. I AM SO GRATEFUL!

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

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Writing the Book: Roadblock

Based on last post, you can see that there’s been a lot going on. Madness is not exactly conducive to sitting down and writing a book. And yet, I can type away here at Happily Ticked Off.

And writers write.

So what’s my problem?

Part of it is that writing about something in a structure format is different from spewing out my crazy ramblings offering up a quick blog post.

A bigger issue for me, though, is the increase in my kid’s tics.

It’s not that I’m so sad that I can’t form a sentence. It’s that I don’t know what sentence to write to finish the book.

Truth be told, I had really hoped this Ticnoir would have a dramatic story but a shiny happy ending: “Here’s where my life fell apart post-diagnosis… here’s where my marriage hit the skids… here is where my two big writing gigs went away… but here’s where Rex and I fall back in love and I’m content with motherhood and my $42.51/month on Ebay and all Stink’s tics are gone! Woo hoo!”

After a few years dealing with T.S., I had no real illusions that there would be a magic bullet for tics. But after all the diet and all the supplements. After all the good sleeping and trying out meds… I certainly didn’t think the tics would be worse.

And yet, they are.

And for the end of a book, that totally blows.

It’s like going to a movie about a woman who loses her high paying job and then has a hard time making her mortgage. She has a hard time feeding her kids and her husband gets sick with MS.

But then, a la It’s A Wonderful Life, the community pitches in. In the last scene of the movie she gets a ton of cash from her church and some fat kid gives her the last nickel in his piggy back. This woman not only saves her house, but has enough funding left over to re-do her kitchen. Her husband was misdiagnosed and her kids have more organic food than they know what to with! There are cheers and shouts and tears of joy! But then, in the last scene, some thug socks her over the head on the subway and steals her huge wad of cash. Her husband gets squashed by a Gremlin and she and her kids go homeless, eating 99 Cent store Mac N Cheese forever. The End.

Who wants that kind of ending? And really, if you’re going to get hit by car, wouldn’t you rather get hit by a Porsche?

I suppose, in a way, this is my apology to you: Sorry, suckers. I couldn’t fix your kid’s T.S.. You can stop reading now.

But again, and I mean this (waaaay deep down): Enter whisper: “If you can’t fix the tics… fix yourself.”

I’m trying.

I really am.

And for what it’s worth, I’m supporting you along your way.

The Bottom Line

Does everything we do to help our kids through diet and healthy choices and meds (if needed) help? Yes. I do believe it does. I believe it could be far worse without it.

The Truth

Ten years old is hard for any kid – especially kids with tics. But this is a season.

Even Better

I’m not in the emotional toilet. As I tell my blog friend, Margaret, “I am not in the bell jar.” Ring ring ring the bell! Maybe that’s the happy ending. That I’m learning to roll with life and never give up. I’m learning to… enter my other theme, “Accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.”

Hang tight, all!

* Photo of me and Topanga T when I was 4 sent by my cousin, D D. Little did I know, at that innocent age, what a ride life would be. But maybe I had the right idea back then. When times get tough, get dancing.

Brain Balance, Change, Cancer and More!

WARNING: Loooooong post ahead. I am not journaling these days, but I need to. Lucky for me, I have a blog to fill in the gap! Sadly for you, it’s a mouthful. You were warned.

I don’t know about you guys, but there’s a lot of change in the air around the Frazer household.

Renting a Room We’re in the process of bringing in a renter. She’s a lovely assistant at the kid’s school who doesn’t have a car. She’s thrilled to walk the one mile to campus each day rather than take the bus. We’re thrilled because it will give my husband something we both need so badly: Time. The kids love this lady, so to work off rent, she’ll watch the kids 10 – 20 hours a month, giving Rex and I an opportunity to breathe.

Upon hearing we’ve consolidated our livingroom/TV room into one room, turned the dining room into an office, and turned the office into a bedroom for R, most people are really shocked. We get one of two reactions:

1. You only have 3 bedrooms! Why are you doing this!?

2. I can’t believe Rex – who is so private – thinks this is a good idea!

The answers to those inquiries are quite simple:

1. We have needed to get rid of crud for years. The kids aren’t ready to transition to their own rooms yet, so why not get a little income to fix up the house before they finally separate next year?

It’s taken one month of solid work, but we’ve disposed of about 800 square feet of stuff, leaving us with more room and organization than ever before.

2. Rex is as ready as I am to take some of the pressure off, both financially and emotionally. He can’t work 60 hours a week and then always be the beacon of calm when I’m freaking out over Stink’s tics which, is less and less these days, but some weeks I’m human. Last week? Not good. I could use some adult conversation on the nights my hub works late. Also, I am ready to build out my office to get writing work again, but need a better place to create in. The renter is our answer.

Stink’s Tics

Regarding Stink, the tics are still pretty yukky. I’ve decided to go full bore and save for Brain Balance. This is the one time I will mention here that I am accepting donations for this. After I’ve saved $ for Stink, all additional income, minus a small amount I will keep as compensation for writing this blog, will fund other children and families to go to Brain Balance or get additional support in their area for tics.

Please don’t feel obligated to give me a penny. I’ll keep on writing here forever. I just figured, with so many people with less worthy causes making $ off their blog, I would finally try and create a small stream of income for something I find quite worthwhile.

Note: I am open to comments telling me I’m extremely tacky to do this when I have a husband with a decent paying job. I would not disagree. At the same time, I’ve always been quite honest that Rex and I disagree over therapy for tics. He thinks Stink is fine the way he is – which is awesome. Me? I think there’s more we can do. Rex and I have agreed to disagree that if we are going after Brain Balance, this is my project to fund. He will be more than happy to support us and cheer us on, but he  is concerned with saving for college and things that will definitely be in our future, not the maybe’s of an alternative program.

House Transition

Here are some pictures of our progress with the house. Believe it or not, it has taken hours and hours to get cabinets cleaned out. The kids have cried over getting rid of old dressers and bags of plastic toys they don’t need. But in the long run, they are so relieved to have a nice space to call their room. Life, like tics, are always changing. My job isn’t to make them content with everything and spare them from yuk. My job is to give them inner tools to have peace while chaos is happening.

Here are some pics of stuff in progress

LIVING ROOM

We removed a brown couch that was blocking the window. We took out a huge armoire that was taking up space and put the piano there. We now have paths to walk around! Plus, in getting rid of the old, we had room for the new – like the lovely 100-year-old sewing machine you see in the 2nd picture.

Small Fixes: Paint and patch walls, add new photographs as Pip is no longer a new-born, and another cool seat in the corner for more entertaining.)

Dream Fix

OFFICE

The dining room used to look like this

It now looks like this:

Small Fix: Bring the big armoire that is currently storing Ebay stuff (used to be in living room) to the cabin. Bring in old office desk and use the plastic rolling carts for the time being until you can do this:

Dream Fix:

TV Room

It used to look like this

It was very crowded with the art center, the little table, the couch, the TV, the book shelves, the science center…. don’t make me go on. Now the shelves are going into the renter’s room. The old stained couch is gone. We’re building some shelves under the bar area (an un-used space) for all my dishes. The only thing in the room now is the big table and the TV.

Small fix: Take down 1980′s plastic blinds, put up toille curtains. Put a nice curtain over the corner of the TV area (as we don’t want TV in living room) and get a nice tall couch for one side of the table near window that will double as both TV viewing and eating. Build shelves under the bar and cover with a curtain. (Maybe get a nice sideboard when the shelves are moved into the renters room. Shelves not pictured here.) Paint the walls gray and get a chandelier over the center of the table.

Dream fix

RENTER’S ROOM

Here is our old work space office in transition. If you think moving computers into the kids’ shared bedroom, moving 10000 pieces of Ebay into the new “office” and hauling out 10 bags of trash was fun, you would be more wrong than many of the political rants I see on Facebook these days.

But the kid’s room is moving along! Here it is without a good paint job, and with many baskets still on the floor. Not bad for a shared space.

KIDS ROOM

I’m not sure why the last 2 pics won’t right themselves up, but it’s fine. These days life is getting comfortable with things I’m not normally comfortable with. I just know it’s all going to be okay.

Dream Fix (taken from Babble)

OTHER THINGS OF NOTE

Ebay

Today I need to get 20 items of Ebay up today as I’m selling for other people in an attempt to not work for $7/hour retail while I write my book.

Breast Cancer

I need to make an enchilada for a friend who just had breast cancer surgery.

Leukemia

I need to find time to see my other friend, Karen, who is on her third round of chemo for leukemia.

Look how amazing she looks!

Food Shopping

Apparently kids need to eat, and so do Rex and I.

Book

At some point this week I need to write my book some more. I’ve been at a road block which I’ll talk about in the next post.

Ex Husband

My ex-husband died a few weeks ago leaving a 10 year old boy and 2 living parents. He had a random brain tumor. Uggg. We haven’t been close, but I did see him in Christmas, 2011, for a brief visit. I’m glad we caught up and mended some bridges. This was a pic he posted on Facebook with the quote “Me the ex-Mrs. Ingman, taken 19 years after our wedding.” Um, I wasn’t thrilled by that. But hey, that’s FB for you. May you rest in peace, dear Jim!

FINAL THOUGHTS

I don’t know what to say except bring on the tics, bring on the house upheaval, bring on the illnesses. We can this together.

Love you all.

Thanks for listening.

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!

Acupuncture for Tourettes and Tics

Many times in the early days, when Stink’s tics seemed awful, I’d say, “God, I’ll trade in x if you take Stink’s tics away.”

When things were calm, I’d say, “God, I’ll trade in x if you keep the twitches mellow just like they are.”

My prayer request was not granted, but as the Rolling Stone song says, “You can’t always get what you want, but if you try sometimes, you just might find, you get what you need.”

Apparently what Mama needed was her life back – a life that didn’t consist of worrying about Stink 24 hours a day. It didn’t mean I didn’t have to try to suppress the tics and keep him healthy, but as the motto for my website goes, I had to work toward “Accepting the tics I couldn’t change, change the tics I could, and have the wisdom to know the difference.”

After some careful prayer and consideration, it was pretty obvious I had to get back to my writing, hence this blog and my book. (The book… I’m so behind. I’m going to have to stop talking about it and just do it.)

While doing what I love didn’t change Stink’s tics, it helped me stop focusing like a laser light on what I couldn’t change and try a few new things. One of those is acupuncture with the talented Martina Eberhard.

As you can see, needles in Stink’s ears left him highly traumatized.

Stink will be seeing Martina 2 days/week for at least two months. I’ll keep you informed of his progress.

Meanwhile, Martina will be working on his “wind” to create better digestion. Apparently his tongue is an off color, indicating that he is not processing food as well as he could which doesn’t help with tics. Given he’s eaten more gluten than a truckload of Webby’s bread this vacation, I’m shocked his tongue hasn’t transformed into a oblong ball of white spongy flour.

What about you all? What kind of treatments have you pursued either for yourself or your kids?

Until next time, enjoy the pleasant visual of needles being placed into my kid’s shins and head. The irony that just 12 hours earlier I was using sewing needles to hem his pants did not escape me.

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