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Chicago, Summer Camp and More

So Miss Adelia and I both left our kids with sitters and enjoyed a lovely meal in Hollywood. We felt very fancy with our big Diet Cokes and yummy Italian food. We ate on the patio with the warm breeze blowing. I did not once think about anything gluten free. “Bring on the dinner roles with the olive oil,” was my motto. It was delcious.

The show? Oy. Christie Brinkley is gorgeous. She’s actually quite charming and even funny. But she can’t sing. I mean, not at all. I wanted to like her. I really did. But I didn’t. Everyone else in the cast, from John O’Hurley to Amra-Faye Wright were spectacular. The dancing was superb and the costumes were incredible. But the story was dark. It was somber. And with all the evil in the world, I just didn’t get it.

You could say that I have been so down about Tourettes that my opinion was swayed. But the truth is, I wasn’t. I get annoyed when I’m in the same room with Stink for hours on end and get no break, but the moment I leave, I’m fine. And frankly, I’m getting less annoyed even with Stink. After all, he’s the one with this disorder, not me. I’m so unbelievably proud of his resilience and amazing attitude. I might as well have the same. He rocks!

In closing, I called a camp for summer. I was thinking about enrolling him and Pip in musical theatre. I mentioned that he has T.S.. Their response was that it’s fine if he comes with an aid. “An aid? He doesn’t even have an I.E.P., though,” I balked. “I just told you about his diagnosis so you wouldn’t freak out about a few tics during rehearsal.” Their response, “It’s fine! Really! As long as none of those behaviors that come with T.S. accompany your camper.”

Um… Huh. Head scratch head scratch WHAT????

I get it on some levels. They don’t have time to accomodate special needs kids who don’t come with special needs support.

On another level, though, it’s frustrating. I lose either way. If I don’t say he has T.S., they’re going to wonder why he’s occasionally coughing or churping during “How Do You Solve a Problem Like Maria?” or adding individual neck rolls to “Doe a Deer”.  If I inform them of his condition, though, and he does something very Stink like – very sneaky and appropriate for any average NT 9 year old  – he’s automatically singled out as “The Tourettes Kid.”

Forget that racket! I spoke to my hubby and we’re enrolling our kids in the YMCA this summer. I don’t have the energy for this crap. Once he gets his tics dialed and we’re off this study, I’ll go back to fighting dipshxxxts.

For now, I want to enjoy my summer, tics and all, and hopefully not have to sit through Christy Brinkley’s musical acts. Hell, she doesn’t have T.S. and should have been kicked out of that play. Funny how things work sometimes, eh?

Good night everyone! Love you all and am praying for your beautiful babies!

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Still the Same

Here’s the upswing of an uptic. I’ve done this long enough to know that this, too, will pass. It simply can’t be that the meds aren’t affecting him. And so, we will wait it out and start over again this summer. Things seemed to be best when we did acupuncture twice a week. So that’s what we will do again.

And then, if my book gets sold, or I decide to get off my butt and get a job, I’ll do Brain Balance.

But the one thing I won’t do, tics or not, is go back to that place of “my life will only be happy when my kid stops ticking.”

That’s just silly.

As I type, the babysitter is playing hand ball with the kids. I cleaned the house while she made dinner. Tonight I’m picking up the lovely Adelia and off to see Chicago we go! First stop, dinner in Hollywood. Oh, what was that you said? No, the tics weren’t invited. They will be put in their place where they belong which is out of mind so I can enjoy myself.

I hope the same for you. Enjoy yourself! Your kid is fine and so are you!

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And When They Could Not Get Worse…

…they did.

The worse tics ever today.

Ever.

I’m really trying not to be beside myself.

But I’m beside myself.

I don’t think (obviously) this UCLA study is going well at all. The best I can hope for is clarity at the end of this so I can have a better idea of how to parent this kid with (or without) meds.

Tonight, as luck would have it, Stink asked to pet a dog in front of our house. I have never seen this lady in my life. He walked away, after madly sputtering and eye rolling and squeaking and throat clearing, and she says, “Oh, does your son have Tourettes?”

“Yes,” I say.

“I know because my daughter has it. She’s 21 now.”

I was hoping to hear this great story about her – how she’s amazingly gifted and secure and has no problems at all.

“She can barely get through college. She has OCD, ADHD and her judgment is so bad she was recently arrested.”

Well that was helpful.

Folk, listen to me: We are not going down that path. I don’t care what my kid has or yours, we are going to fight like hell to accept the tics we can’t change, change the ones we can, and have the wisdom to know the difference. We are going to get good support systems going – for us and them – and we are going to nurture their spirit until their character far outweighs some impulse issues.

I don’t totally believe I can do this tonight. I’m pretty defeated right now. But guess what? I have another daughter to raise. I have a book to write. And my kid? He’s going to rock – regardless of this rough spot. We’re all going to look back one day and have a good laugh. Here’s to staying positive!

And here’s to a $40 gift card from hubby for Starbucks! If I’m not drinking wine, I’m drinking good java. Tonight is the night if there ever was one.

Stay close by, okay? We’re going to all learn from this! Andrea

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Finding the Right Grammar School for Your TS Kid… I mean, Mama

Stink didn’t get into Catholic school. “He doesn’t hold his pencil correctly,” I was told by the principal. I looked at the Jesus statue above her head, his hands all folded into prayer, and I swear I saw his middle finger go up at her.

Cut to five years later and yesterday’s post. I am BEYOND grateful to have my son at a school where he’s nurtured academically and developmentally. There is zero judgement. They go above and beyond to work with where we are at. They find him to be a riot – in a good way. His handwriting is still more atrocious than a serial killer on crack, but they foster what is important: He loves writing and reading. A few tics? Meh. No biggy. They support him. And, well, they support me.

Take this letter I just sent off to the principal. Where else, but my kid’s wonderful public charter school, could I just be myself and state it the way it is.

Hi Principal Kris –

Sorry for being out of it this morning. Stink is on a trial medication study and it’s really affected him so poorly. I’m pretty upset about it. Either it’s the placebo which, giving a kid who tics 10 grams of a sugar pill/day is pretty stupid, or it’s the meds. Either way, his tics are through the roof –insane even for him – and his focus is abysmal. So now I’m taking my kid every week to UCLA to increase duck quacking sounds and have him sent to the office for being more unfocused than a drunk sorority girl at an archery match on doobage.

 Sigh…

 That’s my rant for the day. I hate everyone.

Andrea

————————————

Are you all happy with your kid’s school?

Chin up, people! It’s going to be okay! (As I tell myself while I down my third cup of Yuban which, if you think about my frazzled premenstrual nerves, is about as dumbass as thinking my pink umbrella toting artist ticker was going to make it through 8 years of parochial school.)

As I tell my kids when I’m mad I can’t think straight and am trying to hold it together, HAVE A NICE DAY!

 

* Photo of Stink with his steady companion, Z. As of two weeks ago, they plan on going to highschool together and continuing their sleep over traditions. Um, not so much.

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Tics Never So Bad – OY

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.

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Consequences and T.S. – The Big Pay Off

When I was in the middle of my big “do I or do I not follow through with this UCLA study/medication” I spoke to one of the doctors. She once again told me the pro’s and cons of Intuiv. The pros: It’s been on the market for 20 years. It’s got very few side affects. The cons: It can make a child really sleepy and sometimes faint due to its blood pressure lowering attributes.

I was still so iffy. It seemed weird to push my kid toward medication when Stink was content with himself. “He’s happy. He loves his tics!” I said to Dr. J..

Her response was a bit startling to me. “Yes, you’ve said that and so has he. It seems kind of odd, though… this whole liking his tics thing. What’s the meaning behind that do you think?”

I had to pause. What was she implying? That somehow Stink was living in Delusion Land? That perhaps I, as a mother, had been feeding my kid the Kool Aid all these years? (Note: This Kool Aide would of course be organic and dye free.)

Dr. J is really great, so I’m not annoyed at her, so much as surprised by the reasoning. Isn’t it possible that a child could like themselves, despite a few tics and twitches?

Is it possible… not to pat myself on the back (but it beats the alternative of flogging myself with fear so go with me)… that Stink was brought up to believe that he, as a person… as a soul… is valid, despite a few “flaws” in the form of tremors and twitches?

And is it at all plausible that this self-confidence is not a side-effect of “potential” Aspergers – the syndrome where people are considered non-self aware and self-focused to an extreme – but the ease in his own skin has to do with the fact that… here’s the zinger, folk…. he actually likes himself.

This leads me, once again, to my feelings about God. (Sorry to you non-faith based folk.) As you know, I’m on a Christian path. It’s one where I have my doubts right along with my blind acceptance of improbablilty faith. But the crux of the matter is this: If some dude really came to life as God in human form, was nailed to a cross, then rose from the dead to have new life, isn’t it possible that my own very human son, through the grace of God, could rise above his own wonky circumstances and love his life?

From my impartial perspective (ha ha… like I could ever be impartial about this little Stinker) my son’s love for his differences come from a combo of 3 main things:

* Personality

* Home life

* Faith

Like the trinity I look towards as strength and support for my joys and sufferings, how can I not look to the trinity of those three attributes and give all of them a little bit of credit toward his contentment?

Never to be underestimated or overlooked, so much of who Stink is comes from his sister. She is his greatest fan and advocate. As the sibling of a “special needs” brother, I am acutely aware that she needs the same sort of honor and time as I give him.

The other day, I said to her, “Pip, you know, there are groups for sisters of kids like Stink. I could totally sign you up if you’d like.” Her eyes got wide and she squealed, “You mean, a group for sisters who have brothers as awesome and funny as Stink?!”

I laughed out loud. What do I owe such an amazing daughter to? Perhaps more of the 3 above. I’m beyond grateful.

In closing, going along with my gut (or as my faith calls it, The Holy Spirit) I really felt compelled to follow-up on this drug study, despite Stink’s protests. “I won’t do it!” he stated in the bathtub one night. “I will spit out those pills! I will pretend like I’m swallowing them and stuff them down the toilet!”

“UCLA is going to give us $25/week for eight weeks for participating in the study. I’ll give it to you to save toward Disneyland tickets,” I offered, figuring he’d turn me down anyway.

“Sounds good to me!” he conceded.

I’ve now got a son fifty bucks richer, two times more hyper likely due to a sugar pill and one happy sibling who will be tagging along with him to the Happiest Place on Earth.

This Jesus of mine clearly has a good sense of humor.

* Photo taken last week before the kids’ music show. That’s my Pip on the left. Miss L is on the right. Stink is, of course, front and center. It’s shocking he’d pick out clothes that would make him stand out so much, huh?

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Where I’m Really Ticked Off – A Hideous Few Days

Stink started his medication last Thursday. At least we hope it’s medication. There’s a 50% chance he was given a placebo. Based on his disposition the past week, however, we’re pretty sure what he was given a form of FDA unapproved BOC.

Standing for Behavior Out of Control, this pill has caused the following side affects:

* Uber lack of focus causing his teacher to send him out of the classroom with the following words, “I’m Done.”

* Passive aggressive meltdown post-school at a friend’s house where he “forgets” his writing journal, proceeds to lock himself into the bathroom, later crawls out of the bathroom on his belly and hides under said friend’s bed when I tell him we’re leaving, forcing the same words out of my mouth as his teacher’s, “I’m Done.”

* Being sent to principal’s office the following afternoon after being warned twice to calm down in music class. Apparently sticking his face into another girl’s face unannounced and then sucking in air like a gaseous puffer fish was not appreciated

* Unprecendented (even for Stink) aruging with siblings and parents, sloppy dinner behavior and more defiance than an O.D.D. kid raised in a barn

I’d love to say this is all an effect of the medication, but given Guanfacine’s (Intuiv’s) main side affect is exhaustion, I’m thinking my son is truly just experiencing B.O.C. which is making me experience LMS – Lose My Sxxt Disorder.

It must be a full moon or something, because many mothers on my beloved Twitch and Bitch private complaint support board are experiencing the same thing.

After talking to the beloved Dr. McCracken at UCLA yesterday, he affirmed that while anything is possible, this upswing in Stink’s turd-like behavior is likely not due to meds. He says that “kids like Stink” go through periods of this where it’s like a trickle effect – one bad event leads to another.

I’d like a trickle event to happen in my life, too. I’d like one glass of vino to lead to two glasses to lead to three glasses followed by a one year stay at a bed and breakfast where I’m served Yuban for hours by a twenty two year old Italian named Roco.

Wish me luck.

PS: Turns out Stink had an awful sore throat last night. “Oh, good,” I thought. “Maybe that’s the reason his behavior was so bad.” No excuses, of course, but could be his impulse control was even less due to illness.

I kept him home today from school so he could rest. I can report, with nothing but pure relief, that he was on the mend by 10:30am! I mean, look at him taking his bath. It’s like a miracle happened! Praise God!

I. AM. DONE.

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I Changed My Mind on Meds – Because I Can

I’m back.  I’ve missed you all. How have you been?

I’ve been busy Ebaying and organizing my office. I’ve been swimming in Great Grandma Stella’s pool. I’ve been attempting to get in shape and get more sleep and pray and laugh and maybe, just maybe, I’ve been obsessing a teeensy bit more than a boatload of elephants at a circus parade about my decision to keep Stink off focus medication.

To be more specific than last time – because it’s just easier to not be cagey (like those poor elephants in the previous paragraph and shut up about that joke it was funny) – the idea of high functioning Aspergers came up at our last UCLA meeting. As I mentioned also, combined with many visits with teachers over the past few years, I decided to look into it more via a UCLA diagnostic study.

Shock of all shock, Stink fits the description for being “on the spectrum” and is a candidate for their drug study – one that uses Intuiv.  Intuiv is used for ADD and UCLA wants to see if it helps kids deal with Asperger symptoms. Continue reading “I Changed My Mind on Meds – Because I Can”

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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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Gluten Free Living/Vitamins/More Revelations!

A new reader asked me to point her toward some of my more concise posts on diet and T.S.. (Me? Concise? Is that possible?)

It got me thinking that I should really add a tab on diet/nutrition to this site. Until, then, though, I’ll leave her and you with a link from my old website.

Gluten Free/Caesin Free Living and Tourettes

http://www.lifehappins.com/2/post/2011/09/10-ways-to-go-gluten-free.html

This is a great book on T.S, diet, etc.

http://www.amazon.com/Natural-Treatments-Tics-Tourettes-Patient/dp/1556437471/ref=sr_1_1?ie=UTF8&qid=1331674008&sr=8-1

Here’s info on how to test for food allergies

http://www.lifehappins.com/2/post/2008/11/the-abcs-of-igg-testingfood-allergies-and-tics.html

My Revelation

Stink’s Tarzan is still with us. I’m trying really hard to love it. Perhaps instead of viewing it as the squatter that constantly interrupts my son’s speech, I will view it instead as a quirky visitor who adds spice to our days. If only Tarzan would cook and clean toilets I might consider permanent adoption.

While I will never stop looking for ways to eliminate this sucker (stricter diet? more acupuncture? less Wii? better vitamins? drug options?) I had a super big epiphany today about me.

I was sitting in Bible Study, and we were asked to talk about a time when we simply could not forgive someone – no matter how much we were called to do it for our faith.

“Who would like to share?” our 82 year old kick-butt leader asked us. (I seriously want to be Rosemary one day. She hikes, wears Ugg boots, and is a nurse working as a lactation consultant. She had a shower at her home last weekend for one of our knocked up sisters in Christ. She called it “Better Than Sex” cake. Moving on.)

No one wanted to share their stories of un-forgiveness and anger. I don’t believe it’s because they were all so pious. It’s hard to talk about the ugly side of ourselves. Lucky for my leader, I have no shame.

“I have someone I can’t forgive,” I said. “Tarzan!”

I explained how, no matter how much I tried, I simply could not accept that annoying sound. I admitted that I’ve come a long way from getting totally nutty about it, but it still bothers me. I want it to swing on outta there.

“I am not 100% defeated, but I’m not 100% at peace when my son tics. I want to love Tarzan as he is part of my child. But I don’t. I hate him. (pause) With all my heart. (Pause) I don’t forgive him. (Pause) But I want to.”

People nodded and said they would pray for me – which is totally awesome. I do believe it’s God’s grace that is strong when I am weak.

Then a beautiful Barbie of a woman – call her Jodie – chimed in. In a venue where she could have left me with happy platitudes, she cut right to the core: “I don’t think you’ve accepted the tics because it’s not really about the tics. It’s really about you. When you are able to accept everything about you and love yourself the way Jesus 100% loves you, the tics will lose their power.”

Well, there’s that.