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In an effort to get people connected, you can now find posts from this site as well as other inspirational T.S. related stuff, on Facebook.

Follow me here! Feel free to write me, also, at HappilyTickedOff@Gmail.com

Talk at you soon – and can’t wait to connect.

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Happy New Year! Tic Resolutions?

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Keeping this short as I’m at work. (Unless you’re my boss reading, in which case I am diligently coming up with 75 Examiner Headlines.)

How was your holiday season? How are the tics? How are you dealing with them?

One dear friend of mine from my private group keeps a Victory journal. It’s a faith-based writing memoir in which she shares her struggles and hopes for her son with God. By writing down verses and scriptures, she has an automatic go-to way to release some of her fears. I love that!

As for me, I am a pray-er and list maker. Here are my goals for dealing with Tourettes this year. Would love to hear yours.

Fantasy Goal

Not let tics bug me in the least!

Realistic Goal

Find the courage to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

Vocal Tics Gone

Thanks to acupuncture, Stink’s vocal tics are gone. I mean GONE. Given how much crap he ate over Christmas, combined with video games and lack of sleep, I don’t believe this is just coincidence or part of the tic cycle. Acupuncture is the reason, so I’m grateful. (Stay tuned this week as I video tape the lovely Martina speaking on this subject!)

Still Shaky Shaky

Unfortunately, my son’s head shakes/nods are at an all time high. I mean, NON stop. (How they don’t bug him is amazing. I honestly get so drained being around it sometimes. I swear, it’s ME who needs some kind of hyno-therapy for this. Still, not depressed like I was years back. Just working on acceptance. There is hope!)

Martina thinks that the supplements will kick in after six weeks and to be patient until then. If the constant shakes don’t go away, it’s time to reconsider how much time he spends on the computer.

NOTE: I pray that he does find relief via the herbs she is prescribing, because he SOOOO loves his gaming. He is not playing all day. He plays weekends only. During vacation he plays 1 – 2 hours/day. This might seem like a lot, but as a kid, I watched TV 1 hour-2 hours/day. I also biked and ran and hung out with friends, just like Stink. We’ll have to see.

Realistic Plan for 2014 for Tic Treatment

* Gluten free unless a birthday party in which he gets pizza and cake. (Similar to me and wine. It’s all moderation.)

* Computers weekends only except 10 minutes/during week to feed some virtual plant in some game. (I know, it’s dumb)

* New sport introduced for daily exercise

* Dog for him to walk daily! (Stay tuned! He got a promise for a dog on New Year’s Day which was also his 11th birthday! Tics increase in the tween years, so I’m keeping this in mind.)

* Acupuncture 3 days/week + supplements

More Hardcore Plan if tics don’t decrease by Spring

* No 10 minute virtual plant feeding during week

* Going dairy free again

* Revisit the idea of Brain Balance now that I’m working and might be able to swing the 5K

* Consider some kind of Lens Treatment for tics

* Revisit an environmental doc to guide me on pros and cons of letting a kid be a kid (video games) and supplementing with good stuff I’m already doing

For Me

* Daily exercise

* No wine during the week

* Church on Sundays with family

* Bible Study daily (just ten minutes)

* Life Group (small groups of people thru church) to connect with once/week and remind me that my life is not based on tics but something so much greater than myself

I pray that 2014 brings you peace that transcends understanding. I pray that you (and I) remember that all kids have something. We can’t always fix the tics, but we can encourage the gifts our kids are born with. Personality trumps Tourette Syndrome. Love you all!

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

Sounding Off About Vocals – A Real Term for This Irritation!

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Those of you with tics who have written to me often say that your noises bug you.

Those of you without T.S. but who live with it say the sounds can drive you batty.

I have nothing but sympathy for people with T.S. when their symptoms drive them nuts. Honestly, if my friend’s kid is ticking, doesn’t bug me in the slightest! But when it’s my kid, I really struggle.

Perhaps this is like people who have sympathy for the anxiety/neurotic/blabbermouth type. You might find me those other emotionally-inclined people funny, but if you lived with them, you might want to kick them to the closest pharmacy and insist they down a bottle of Xanax with a Zoloft chaser.

For those of you who have issues with vocals – despite feeling guilty for having such issues – I am pleased to announce you might actually have a mental disorder!

This just in from someone in my Twitch and Bitch private group: I had to share with my loyal mamas here!

You’re welcome.

Misophonia:

Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred, and disgust) are triggered by specific sounds.  The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is often used interchangeably with the term selective sound sensitivity.  Misophonia has not been classified as a discrete disorder in DSM-5 or ICD-10, but in 2013 three psychiatrists at the Academic Medical Center in Amsterdam formulated diagnostic criteria for it based on the largest cohort of misophonia patients so far, and suggested that it be classified as a separate psychiatric disorder.

The disorder comprises a unique set of symptoms, most likely attributable to neurological causes unrelated to hearing-system dysfunction. It can be described as an immediate and extremely negative emotional response accompanied by an automatic physiological flight response to identifiable auditory, visual, and olfactory stimuli. The disorder disrupts daily living and can have a significant impact on social interactions. A 2013 review of the most current neurological studies and fMRI studies of the brain as it relates to the disorder postulates that abnormal or dysfunctional assessment of neural signals occurs in the anterior cingulate cortex and insular cortex. These cortices are also implicated in Tourette Syndrome, and are the hub for processing anger, pain, and sensory information. Other researchers concur that the dysfunction is in central nervous system structures.  It has been speculated that the anatomical location may be more central than that involved in hyperacusis.

Symptoms:

People who have misophonia are most commonly angered, and even enraged, by common ambient sounds, such as other people clipping their nails, brushing teeth, eating crushed ice, eating, slurping, drinking, breathing, sniffing, talking, sneezing, yawning, walking, chewing gum, laughing, snoring, typing on a keyboard, whistling or coughing; saying certain consonants; or repetitive sounds.  Some are also affected by visual stimuli, such as repetitive foot or body movements, fidgeting, or movement they observe out of the corners of their eyes; this has been termed misokinesia, meaning hatred of movement. Intense anxiety and avoidant behavior may develop, which can lead to decreased socialization. Some people feel the compulsion to mimic what they hear or see. Mimicry is an automatic, non-conscious, and social phenomenon. It has a palliative aspect, making the sufferer feel better. The act of mimicry can elicit compassion and empathy, which ameliorates and lessens hostility, competition, and opposition. There is also a biological basis for how mimicry reduces the suffering from a trigger.

Prevalence and co-morbidity:

The prevalence of misophonia is unknown, but groups of people identifying with the condition suggest it is more common than previously recognized. Among patients with tinnitus, which is prevalent in 4–5% of the general population, some surveys report prevalence as high as 60%,[11] while prevalence in a 2010 study was measured at 10%.

The Dutch study published in 2013 of a sample of 42 patients with misophonia found a low incidence of psychiatric disorders, with the exception of Obsessive-Compulsive Personality Disorder (52.4%).  It has been suggested that there is a connection between misophonia and synesthesia, a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.  The basic problem may be a pathological distortion of connections between various limbic structures and the auditory cortex, causing sound-emotion synesthesia. There are people with both misophonia and synesthesia, and many people with synesthesia have more than one form of synesthesia (there are over 60 reported types).  Misophonia may very well be another type of synesthesia.

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They are now doing studies to see if there is a relationship between ADD and Selective Sound Sensitivity Syndrome (4S).  Individuals with ADD are typically not bothered by loudness of noise – rather, the softer, repetitive, common sounds are the ones that irritate, distract, anger and sometimes send them into fight or flight mode.

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

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.

Stay a Julia Child at Heart

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!

Tics Never So Bad – OY

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A dear friend asked me today something today. He commented that not being able to change tics, but instead change yourself, made sense. Why, then, would I be so bothered by an uptick (no pun intended) in tics?

I could probably give a long answer psychology wise on why this is so, but I am too tired tonight. Instead, let me ask you: Why do tics bug you so much? Is it you are afraid of your kid being teased? Does it bring back bad memories of childhood for you?

As for Stink, we went from 1 pill to 2 via the UCLA study. Not only is he focusing horribly, but his tics are through the roof. My hubby, who never notices them, asked me tonight, “How are you doing? I mean, Stink’s tics are beyond out of control.”

I wasn’t sure whether to laugh or cry. I was so happy he actually FINALLY saw what I see every single day.

But I’m a bit disconcerted that, well, it’s likely that Stink has either been given a sugar pill placebo or he just isn’t reacting well to the meds.

Moral of story? Mamas, go with your guts. If you don’t want to do meds, don’t. For me, I don’t think we will stick to meds long term, but my gut says we need to finish this to its conclusion. So off we go.

Wish us luck. And I will wish the same for you. Love you all.

David Finch’s The Journal of Best Practices – An Asperger Marriage Review

As I sit down to type this post, five children are running wild in my back yard. Two are throwing dozens of colorful plastic balls over the net enclosure, while the other three bat them right back out. A few balls will likely land over the cement brick wall, resulting in tears, anger, and ultimately laughter as stories are made about Crazy Ed pulling “magic circles” out of his pool filter.

As the coffee hums, the cell phone rings, the house phone follows in suit, and dinner sits uncooked on top of my kitchen counter, I think of my husband: My very organized, methodical, practical husband.

For starters, there would be no children over on school night (my son still has a bit of homework to do.)

For seconds, how much longer am I going to trade services – taking Miss L home a few days a week in exchange for acupuncture? Wouldn’t less chaos be equally as effective in calming down Stink’s tics?

For thirds, why are two of the neighborhood boys here and why are two more kids playing basketball in our driveway? “Don’t they have a home?” he might wonder aloud, to which I’d respond, “Yes, but it’s nice having life in our home. We have to be flexible.”

Depending on my mood, I might be furious with my logical mate. While he means no harm by his comment, I might view it as insensitive. When he married me, I was a vintage wearing/cat eyed sporting/card-carrying WGA TV comedy writer. He wasn’t saying, “I Do” to Ms. Homemaker U.S.A.. These days, the only thing funny is my sense of domesticity – and believe me – we’re not always laughing.

On some days, I might blow his comments off. “That’s just Rex,” I might chide, too happy with my writing gigs or $12.75 Ebay windfall to really ruminate on his remark.

On other days, perhaps after nights of 5 hours sleep and dealing with Stink’s tic upswing, I might feel sad. “Why can’t he just get that life isn’t as easy to compartmentalize as the file folders on his work computer?”

But these days, I often think something else. What if he’s not being a selfish male? What if he just can’t help it?

David Finch’s wife knows a bit about this question. She was fed up with her rigid husband who threw baby tantrums over anything from dishes not being done correctly to having to deal with any change in their schedule that came with children. After five years of marriage, they were no longer friends and teetering on divorce.

Kristen, who Finch describes with endearing affection and admiration throughout his novel, sat him down one night and had him answer questions via an online diagnostic test. “Do people think you are aloof and distant?” (check) “Do you have certain routines you must follow… Do you tend to shut down or have a meltdown when stressed or overwhelmed?” (check and check again, and later, check check check….)

Finch scored 155 out of 200, and then responded with what can only be seen as outrageous aplomb. “I have Aspbergers? I have autism?! I mean… holy shit, right?”

Unlike a lot of folk who might ignore these results, Finch got an official diagnosis from a doctor. Instead of freaking out, he felt relief. He finally realized that his need for control was not entirely his fault: he was wired that way. But perhaps even more astounding than his acceptance of this irreversible condition was his determination to transform his marriage in spite of it.

The result? A New York Times bestselling book. He titled it, The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband.

Published by Simon and Schuster, Finch spares no details in walking us through his transformation. Using a detailed list of observations he’d written to himself, Finch came up with a set of best practices to elevate him from the dog house to beloved man of the house.

Some such rules included taking over kid chores without complaining, taking everyone’s clothes out of the dryer (not just the socks he needed) and not ruining he and his wife’s vacation because of a forgotten dental syringe. (He did eventually find one, but only because his wife was kind enough to stop at a supply store with him. He won brownie points for making due until then.)

Aspergers can take on many functions, but the hallmark of this disorder is monumental self-focus. Another way of saying this is that the person does not, inherently, possess empathy.

As a creative person who feels everything from a wacky gleam in my mom’s eye to the way a dissected frog might feel before being diced in two by a seventh grader, I used to think lack of empathy meant lack of feelings. But when I look at some of my own husband’s responses to life situations (sobbing in the driveway when my daughter was being whisked off to emergency for a chest cough, or breaking down over the birth Stink) I realize now how wrong I was. It’s not that folk with Aspergers don’t feel – they just can’t always put themselves in someone else’s shoes and sense how they feel.

On a logical level (and Aspies are nothing but logical) how can one get mad at someone if they aren’t being anal retentive on purpose? What if they are just wired that way, like our kids, who can’t help but tic? They are genetically built to do so. (Not to brag, but a long time friend once commented that I did, indeed, get that stick half pulled out my husband’s ass. I’m a rock star, I know.)

Understanding on a cerebral level is a far cry from acceptance on a soulful one. Marriage to someone like this can be taxing to say the least. One wouldn’t be human if they didn’t find it maddening. A spouse can feel cheated. “Isn’t a relationship about give and take?” many neurotypical mates might balk. Finch’s response is yes, and so is mine.

What Finch succeeded out so brilliantly, both in real life as well as on the written page, is realizing while he might not be able to understand his wife’s needs on an intuitive level, he can respond in a practiced way that honors her because he loves her.

It’s the same with my marriage, and perhaps yours. Aspbergers or not, all relationships have issues that can’t be wrapped up in a shiny happy bow.  Like a tic, you never know what’s going to pop up out of the blue. We simply need to respond well – and sometimes that takes practice.

“Rex does not have Aspergers!” some friends or family might say. “He’s just being an extreme male!” That is quite possible. But like my son’s Tourettes, I can’t change what is. Either my mate is just very very very set (we’re talking “footprints that have dried for ten years in cement” set) in doing things a certain way or he has Aspergers. Unless he’s diagnosed, I’ll never know. I can only change how I respond to it. Like Finch’s wife, I hope I’m doing so with love, honor, humor, gentle pushings toward change and a whole lot of grace. I can only hope my husband continues to work toward understanding me the way Finch did his wife. I might not get a best selling book out of Rex, but it would be a lovely new chapter for us.

Until then, for those of you who are also dealing with Aspergers with your spouses or perhaps your sons or daughters (it’s often a co-morbid condition with T.S.) please take hope from Finch’s book. It is not the end of the world. It’s simply a different way of thinking. Life isn’t always easy, but it can be challenging, interesting and, as Finch’s writing attests to, hilarious.

As I wait for my husband to return from a 12 hour work day, my son is complaining about leaky liquid coming from his arse. I have seven children waiting to eat tacos. I have 2 articles due and I’m PMSing like a crazy person. If my hubby can come home to all that, I can accept some of his quirks. He loves me. I love him. Like Kristen, I’m in this marriage for the long haul. With Finch’s book, I’m joyful to know that it’s possible to have less survival and more thriving. I wish the same for all of you, both in T.S., marriage and all of life’s challenges.

More on Finch’s book can be found at his websitehttp://www.davidfinchwriter.com/

Also, special thanks to Simon and Schuster for sending me this book and allowing me to sing its praises. Here’s a fun promo of what turned out to be one of the most insightful books I’ve read this year.

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