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Greetings from Los Angeles. As of today, tics for Stink remain at a minimum. (Knock on fake wood desk.) I need to make a few gluten free sandwiches with natural strawberry jelly and carrot sticks (can you feel my son’s excitement?) so I’ll keep this short:

Is this blog enough?

Assuming I continue to write 3 days/week, I really want to know: Why do you come here?

* Tips on diet?

Emotional support?

*Updates on my year without beer?

That’s me on the right!

I ask because I’m considering doing another site – a kind of “upgrade” support group type site. I belong to my beloved private one – Twitch and Bitch – and it’s been awesome. As much as I love writing here – and will continue to for FREE – I wonder if maybe it’s time to dig a bit deeper and bust out the diet charts, the doctor referrals throughout the USA, the homeopathic ads and all the stuff that has really helped Stink.

The fee would be minimal and it would provide a deeper connection to folk going through crisis. As a produced TV and magazine writer, it would also allow me to continue to make a living at my craft providing content for what I am passionate about, rather than taking on another gig pushing organic diapers for $5 bucks/ post to elite parents with kids named after cities and house plants whose feeeeeelings define the universe and who think tics are little black bugs you catch at camp.

My concern with an upgrade site, of course, is that I don’t come of predatory. Example: A big reason I don’t have blog ads here is that I am not a fan of the whole “Oooooh, your son is having seizure like face tics? Click on my ad for magnesium so I can make 6 cents on a click-through and you can waste money on a supplement that may or may not work.”

* For the record: Love the magnesium! More on that another day. (And those You Tube ads at the bottom? Not sure how they got there. Like tics, some things remain a mystery and I can’t worry about it.)

In conclusion, go check out my favorite TS site – the New Jersey Center for Tourette Syndrome. They could use some love and some bloggers also. Are you a writer? I will hook you up over there! Great for your portfolio and you can help moms and dads struggling with tic issues. Their latest post? Dental appliances and tics. I spoke about that once before and it’s an option if your kid’s tics are really yukky.

So…. feedback please! I really want to know what you think of an upgrade site!

Determined to make my resolutions happen this year, I checked the first one off my list and attended a new church on Sunday. True to form, Stink dove right into his Sunday school class. “I loved it!” he beamed. “They taught us everything through music and song and games. I could actually pay attention!”

Pipsqueak, on the other hand, was less enthused. She is my conservative throw back paper doll child. She wears black Mary Janes in winter and white sandals in summer and will not wear shirts with logos or faces of tween singers. No sparkles or glitter for her. She is pragmatic and elegant and a big fan of order and ritual. “I miss our Catholic Sunday School,” she moaned on our way back to the parking lot.

I can’t really blame her. Routine is important to me, too. If it was not, I would not be so hell bent or reorganizing the house. I would not drool like a love sick fool inside Home Goods when my eye lands on a set of toille shoe boxes.

But there’s a fire in me as well. The older I get, the less I like the feeling of stuffing my emotions inside my chest, like one might stuff socks inside that chic container set. Sure, it might look polished from an outsider’s view, but inside, you’ve got mismatched footies with stains and holes. Why not just get real about it? “I’ve got old socks! They don’t look good all the time, but they keep me warm and they are functional and I’m confident enough in myself I don’t care who I impress!”

T.S. has taught me this attitude. While I’d have liked my son to be just like his other friends in fourth grade – no throat clears, no eye rolls, no annoying Tarzan “uh uh uhs…”, the truth is, he is different. He makes sounds sometimes. He twitches.

And best of all, he’s okay with it. If my own son can be so comfortable in his skin, then I sure as heck deserve to be comfortable in mine. And this means finding a place of worship that lets me be Andrea.

“Pipsqueak,” I said to my daughter as we were tucked in bed last night, “I know you like the old church. And I’m not saying we won’t ever go back there. But you know how much you love your current school?”

She smiled wide. “Yes! I can’t wait for vacation to be over so we can go back.”

“Well, I didn’t have that same experience at school. In fact, did you know that I went to school at the very church you miss so much?”

“No, I didn’t know that,” she said.

“It’s true,” I answered. “And did you know that, for whatever reason, Mama never felt totally comfortable there?”

“Why not, Mama?” she asked.

“I suppose because I was good at academics, but I was not good at sports. I was taller than everyone else. I liked to sing and dance and act, but there were no programs for that. So instead of being myself, I had to kind of shut it all down to fit in with everyone else.”

“That’s sad, Mama,” she said.

“It is. And for a long time, I kept going back to that old church, hoping that maybe the people there were different than how they were when Mama was a little girl. And some are quite lovely! But some, well, aren’t. And that’s not good enough for me. It’s not going to be good enough for you or Stink, either.”

Pipsqueak didn’t say anything. She just held my hand and kept on listening. ”

“You need to be in a church where you can laugh and dance and be a bit more relaxed. It’s important to Mama. I want to try this new place. Will you do it with me?”

“Yes, I can,” she said. “I love you, Mama.”

“I love you, too, Pip.”

That night, I thanked God for Stink who would have told those old school bullies at the old church where to stick it.

And I said one for my daughter. My sweet, kind, ritual driven daughter who, despite not being a thing like her effusive mother who never met a yard sale she didn’t love, trusts me enough to try something new. (At least she has her father to keep the order around here.)

Happy 2013, everyone. May you be surrounded by people who let you be you.

The holidays are over.

Deep.

Breath.

Time to get back to a routine again. My kids are FERAL. I mean, it’s bad. And who can really blame them? We’ve given them a steady diet of sugar, no sleep, gifts, music, song, lights and social events. It’s time to open up a big beefy can of Reality Check and start over.

This leads me to my top 10 goals for 2013. (Yes, I have 10. Because I do best when I am busy. A-Personality Type? Helllooooo!)

1. A Spiritual Home: Although we go to church every Sunday, and I do a Bible Study on my own, I’d like to give my kids a more enriched spiritual life. This very well might mean staying where we are for church and getting more involved, or it might mean moving on (finally) to something more engaging. If I’ve learned anything in the past few years, it’s that my God is one of transformation. I love my Catholic rituals and the sacredness, but I also love the more boisterous congregations where God is front and center in EVERYTHING from youth groups to outreach. Maybe there is a happy medium. I’m ready to have their lives be less about them and more about what they can do for others. Perhaps this means 10 minutes of scripture reading at night. Maybe a steady volunteer gig? I will let you know. (What about you? What do your kids do?)

2. An Organized Home: My home is 3 bedrooms. We have a renter, which means my kids share a living space. There is a fine line between not spending a boat load on organizational systems and not living in squalor. Same goes for all the other rooms of my house. With a place for everything, I can finally finish my book, blog more, take on some new projects and enjoy company.

3. More Independent Children: My kids are generally kind and courteous, but they have gotten quite obnoxious lately. Apparently they think it’s my job to cook, clean, entertain and remind them of everything from putting away their socks to clearing the table. No more. Along with #2, they are going to become more involved in actively participating in household chores.

4. Writing: I would like to blog 3 times/week. I am happiest when doing so.

5. Reading: I am ready to get back to reading about other people’s lives. I have met some very dear people through their writing and I am ready to get back to it.

6. Book: I am going to finish that darn book! I’m about 2 months away if I remain disciplined.

7. Exercise: Right before my mom broke her hip two weeks ago I had been working out every morning immediately after I dropped off the kids. It was a life changer for my disposition. I remained calm, peaceful and joyful throughout Christmas. I will continue that!

8. $ – I will continue to make a small income Ebay or a job or a corporate blog or magazine writing or a part time job. This is something I can do in conjunction with my book if I am disciplined with a schedule.

9. Marriage – I want to spend more time with my husband this year. For a long time it was about the Tourettes and feeling sorry for myself. Now that I have a handle on Stink’s tics, it’s time to give gratitude to the guy who makes the money that allows me to write and stay home and set all my goals. I will never be a submissive anything you say wife (tried that, done that, not a good scene) but I don’t need to be an aggressive me me me wife either. It’s going to be about time together, boundary setting and joy.

10. Family – I don’t spend enough time with my immediate family. By having more of a routine with church and a organzied home, there will be more opportunity to focus on what really matters in life. It’s people, not stuff, that grease my wheels.

So there you have it. I feel so much better having put this on paper! So, what about YOU? What are your goals?

It’s four days before Christmas. My mom broke her hip, so we’re not doing the holidays at her house this year. Instead, we’ll have our normal Christmas Eve tradition here as well as a few merry surprises for the kids which I’ll share later.

Stink’s tics remain reasonable. They were up a bit the other day. Apparently macaroni and cheese along with fried breaded chicken sticks aren’t a good combo for our gluten free/dairy free wonder child. But it’s the holidays. I’m over thinking there is a cure out there for TS. I’m going for the bucket theory: Joy, balance and discipline. Shake it all up and do your best.

On a doctor’s note, the good doc at UCLA of months past continued to irritate me last week as I went for a prescription of Intuniv and found he did not fill it. He had never returned my phone calls or emails either. This is an all too familiar pattern from last year when he wouldn’t return my calls for an initial appointment, then once we had an appointment (enter me kicking and screaming) he did not follow up a month later as promised. Three months later, plus a ridiculous dog and pony show for some trial for Aspergers which we still don’t know if Stink has or has not, we have no official diagnosis. What do we have? Some Intuniv that I could have received through a regular physician.

The takeaway from this? You need to be a pitbull with your kid’s medical care. There is no easy 1-2-3 so don’t waste time being frustrated over lack of follow through from doctors. YOU be the follow through. This is no time to throw a hissy.

Another takeaway? Most labels are crap. I don’t know if my kid is an Aspie. If he is, he’s super high functioning with great grades and friends. What I do know is that he is hilarious, smart, creative and has the soul of a preacher/conman. He’s okay in my book.

Treat the condition, but don’t neglect the spirit of the child. The second will take him much farther in life.

How are you all doing? What are your Christmas plans?

When my son was about seven, I was in a really dark place. Two years of railing against tics that were present, as well as invisible “what if” situations that maybe would or maybe would not come to pass in the future, had me very down.

All my gluten free cooking helped, but it did not erase the minor eye rolls.

All my dedication to prayer and letting go soothed my aching soul, but it did not eradicate the occasional “Tarzan” warble.

My husband – who could fix everything from a leaking toilet to an elephant game whose motor was no longer shooting butterflies into the air – could not fix Tourettes.

I was, to put it bluntly, in grief.

I had heard about the stages of mourning, but for some reason I thought one experienced them one step at a time. “Ooh, today we have desperation. Awesome! tomorrow? Anger.”

For me, it came like a whirling tornado of emotions – forceful and overwhelming – all at one time. “Despair! Disbelief! Fury!” It was like one giant trifecta of intensity. In Buddhist language this is often referred to as “losing ground.” In Andrea language, it was referred to as, “This SUCKS.”

During this exciting chapter of my life I brought Stink to a specialist. He wasn’t having any behavior problems that are associated with Tourettes on other fear inducing websites, but he sure was unfocused and at times defiant. I suspected ADHD and wanted help managing it. The good doctor was phenomenal. Within a week, we had a routine down at home that took the responsibility off of me and put it onto Stink.

Looking back, it was nothing but good old-fashioned common sense. But I was too distraught to figure it out on my own. I was smart enough, however, to book a follow up appointment. But it wasn’t for Stink. It was for me.

This psychologist,  a gentle soul in his late sixties, happened to be a Catholic. As a Catholic myself, I was curious about his God-take in what I considered to be so… frigging… unfair.

We spoke about what I thought parenthood would be and why I was so distraught over a syndrome I never saw coming.

We chatted about my husband and my different world views – me being of a spiritual mind and my husband being of a pragmatic one.

I admitted that, perhaps, I wasn’t as equipped as I thought I should be in dealing with marriage and parenthood. Maybe there was a mistake.

This man, with his kind eyes and quiet demeanor, reminded me that our God is not one of mistakes. “Your marriage won’t always be happy, but it can be holy,” he reminded me. “Stink was knit by God in your womb,” he said. “Tics change constantly, but our God is one who stays the same.”

I wanted to say something that sounds like “Duck” and ends in “You.” That was not an answer that was going to fix Tourettes or my relationship issues!

But instead, I shook my head in agreement and started crying. Of course he was right.

After a moment, he posed the simple question: “Do you know what God’s greatest gift to you in all this is?”

I had no idea. I really didn’t.

He looked me right in the eye and said, “The biggest gift God is giving you is Tourettes.”

Three years later, after a ton of processing and times where I still rail against the machine, I know for a fact that this man was 100% right. In a media induced culture where everything is “now now now” and instant-gratification based, diagnoses and relationships are rarely easy. But they are a present – a true gift – because we get to live life on life’s terms.

In this season of light – whatever you celebrate – please know that if you are hurting I have been there. And I get it. And while you may want things different, there is a true plan for your child. You might not be able to always change tics, but if you allow yourself to change and be open to how glorious life can be despite perfection, I promise you will have one present you will never want to return.

My favorite presents of all time is shown below. Go hug yours today! Andrea

I was very sick last week, as was my daughter the week before. For us, it was all about being knocked on our butt for a few days, sniffling like crazy, dealing with a few nights of sore throat due to post nasal drip and feeling exhausted.

Stink had a sore throat on Friday and stayed home from school. Unlike the procedure for Pip and me which involves sleep and hot cocoa, I took Stink a day later to Urgent Care.

When I arrived, I was lucky enough to have the same (may I say very handsome) doctor on call. He swaggered in with his deep brown eyes and five o clock shadow immediately sat down on this rolling chair, flipped open Stink’s chart and began the following conversation.

Doctor Dreamy: So, Stink has a sore throat again?

Me: Yup.

Doctor Dreamy: No fever?

Me: Nope.

Doctor: No spots?

Me: Nope

Doctor: But you still want us to do a rapid strep test?

Me: Yup.

Doctor: Works for me.

Five minutes later.

Doctor: He has it.

Me: (grunt grunt grunt) But you can’t explain why?

Doctor: No. It’s very very odd.

Me: Do you think this is why, possibly, he tics? That his basal ganglia has been ravaged so many times that it simply doesn’t have a fighting chance in hell to normalize?

Doctor: Honestly, it very well could be. I wish we had answers. But I can tell you this: You’re on it.

I rushed into his arms in utter thanks for not looking at me like a two-headed Jenny McCarthy anti-Autism Hippy Mama on Crack.

Me: I try.

Stink is now on penicillin, a change from his normal amoxicillin thanks to Doctor Dreamy who thought maybe, just maybe, a change would do him good.

Now back in school, Stink is his old crafty self. No complaints, no exhaustion, and still no major tics!

What do you all think about the correlation between strep and tics?

My takeaway on strep and tics: Kids who have TS have more sensitive immune systems. The better the diet (though not a cure all) and the more tailored the supplements to each child (get a good homeopathic doc) and the more sleep (8 hours at least) the less likely their immune system is to take a hit. And when the immune system does crash, be kind to yourself. (Moms and dads, you didn’t give your kids TS. You are good!)

* Photo above taken the day after our renter’s birthday when the kids helped bake a belated cake. And check it out: massive food dye on the cake, and still no tics! Vitamins? (new ones… will post later) The other supplements we are on? Natural waxing and waning of tics? Who knows! Don’t care! Will take the break while I can.

PS: Renter didn’t complain about the gluten free cake which tasted like rock sponge surprise. Nor did she mind her new skin color. We have the right gal for our house!

Come visit me at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

It’s been a whirlwind in our home, hence the lack of posts. I hope you have all been well. As a quick wrap up, here’s what is going on with us:

* My friend with the Leukemia is on Round 4 of chemo. She is as cheery as the day is long and puts my complaints about tics to shame

* I haven’t been able to visit her this week due to a massive chest cold which probably resulted from…

* My daughter’s cold last Friday where she stayed home from school

* Lots of run around due to the Talent Show on Saturday that she and Stink participated in. Stink told jokes with a buddy (buddy not shown.)

Pip danced with Miss L and another friend (not pictured.)

* Running around on Sunday to our local food bank for a Sunday school field trip

* Combine all this with Halloween last week, volunteering at a local crisis pregnancy center on Monday, and the every day going ons of being a mom, well… my immune system was bound to crash

I don’t know about you, but I really have a hard time finding balance sometimes. I am not an idle person who likes to sit on my duff when there are causes to be fought that are near and dear to my heart. And yet, what good is waving my flag if I’m too sick to carry it long?

Today, thanks some good friends at my kids’ school, I stayed on the couch all day. They took my kids to school and will take them home afterwards. I only need to fire up my lap top and write. And sleep!

Oh yeah, and VOTE. Vote, people!

I know the burning question all of you want the answer to is, “How are Stink’s tics?” I’m happy to report that they remain very very mild. Except for that minor shuddering he does, the vocals are still at bay. I am so grateful for that. I really am. It will likely change. Tics are like bad holiday guests… just when you think they are gone from a maddening Thanksgiving they show up on Christmas Eve with friends. My motto is to enjoy the quiet while I can.

Thinking and praying for you all.

Supplements

Tics have improved 90% from 7am to4pm. By 5PM, when he’s tired, we’re at a 60% improvement. Almost no verbal clicks or sentence interruption. Minor shudders only.

Behavior

Other than having the teacher write to me saying that he and his best girlfriend, Miss Z, had to be “talked to” for playing tag by patting each other on the butt, he is doing awesome.

NOTE: Because I have written this down, I will be cursed and he will start baying like a horse and be suspended for setting the lunchroom on fire tomorrow.

Good night.

Supplements, Day 3

* Lots of shuddering, but hardly any chirping. I’m scared to even say anymore about that.

Behavior, Day 3

Much easier day today with a lot less arguing. Even if they forgot a few chores and I added in 5 minutes of extra cleaning later, no complaints. Again, let me fall down dead.

Okay, I’m back up. Here’s my real post below.

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As you all know, I’m hardly an expert on behavior. But I can speak for the facts, and those are that my kids really like each other. It’s not because my daughter sucks it up to hang out with my wacky boy, or vice versa. It’s because they truly respect each other as people.

I’ll take a little credit for that (since I can’t take credit for curing T.S.) and go so far as to say that you have to show kids how to treat each other. This often means playing bad cop and not worrying that their self-esteem is going in the toilet because, God forbid, you make them clean the toilet.

I don’t know about you, but I think our culture does such a disservice to our kids. We try to do everything for them. We feel guilty if we can’t. Or we try and over compensate by spending our life savings and credit cards on extra curricular classes and “feel good” artificial experiences when really… really… what they need is to know that they are okay just because they are.

When I began to embrace this idea, I felt less worried about the T.S..

While selfishly I hate the noises it brings, I welcome the invitation it offers me. Every tic seems to chirp, “Andrea, this is one more opportunity to live life on life’s terms. Since you can’t fix the kid, give up the idea that he is supposed to have a perfect life. Let him, not you, earn that confidence.”

So with that, I give you 10 tips for getting your kids to clean up after themselves because, gosh darn it, you shouldn’t have to. (And you’re doing them a service by letting them take responsibility for their actions. I swear. Trust me. Or don’t. I’d love your opinion)

10 ways to get your kids to work

1. Have a family meeting: Let them know you love them to pieces, and because you love them, you’re going to help them be more part of the family

2. Have them come up with ideas of things they can work on: Some ideas you’ll keep: Taking out the trash or clearing the dishes! Others you will ixnay, like: We get to go to Chuck E. Cheese every time we remember to flush! It’s not the ideas you follow up on with the kids that count. It’s listening to them that makes all the difference. (But in the end, it’s a dictatorship. Mom rules. So sorry!)

3. Don’t install more than 3 new things at a time: I heard once that kids can’t take more than 3 changes at a time. I’ve found that to be true. Work on those for 21 days until they become a habit, then move on to the next three. Want to write a list of 100 things that need work? Great. But don’t implement more than 3 at a time or you are headed for frustration.

4. Don’t expect perfection: Tuesday, Stink finished “washing” the back windows. They are more spotty than before he started. But the dirt is off. This will still be easier for me to clean tomorrow. I’ll take it!

5. Stop Feeling Guilty Already! Having our kids work, even if they cry and complain at first, is the best gift we can give them. I find it even more important if they have “special needs” of any kind. If my kid is going to tic his way through 4th grade, he’s also going to do it without food on his face, an organized back pack and a good understanding of when it’s appropriate to tell a joke.

6. Laugh! It can’t all be about work. When it’s done, don’t over compliment them. “Congrats on your mediocrity!” Stay calm, say thanks, and then pull out a board game. It shows that life is about work and play.

7. Stop working at a certain point in the day: It’s so important to enjoy our kids, even if they are bugging us. The less stressed you are – which means you aren’t trying to Ebay while getting them ready for bed (Ahemmmmm) the easier it is to appreciate them.

8. Come up with an allowance: I used to pay 25 cents/day. I’d have the nickels waiting in a family jar in the center with two tin jars on either side for Stink and Pip. When they did their job, I did a fine job of letting the coin clink clink clink in the can. This helped on 2 fronts: They got the instant gratification of money when they did something. When they argued or complained, I made them walk over to their jar, take out a nickel, and put it back in the family jar. If they complained about that, they got to put 2 nickles in.

9. Don’t be such a task master! When we used the jar system, I’d often have the kids take random nickels from the jar and pay themselves. “Just for bringing your dish to the sink without asking!” I’d say. Encouragement is good.

10. Give kids the day off. We try not work on Sundays. No beds need to be made. No major chores. We just put away what we take out.

We have a LONG way to go, but this is what I do to keep my sanity. Would love to hear your thoughts!

Now if you’ll excuse me, I’m off to search for cool laundry baskets. Guess what job Stink is getting when he turns 10? I know. He’s so lucky. As pip likes to say, “Stink is going to walk around with a lot of dirty clothes, Mama!” (Smart ass. She’s right, though.)

* Photo taken on Wednesday morning. They got up, made beds, brushed their teeth AND did their hair by 7:30. All on their own. It’s a miracle!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (My big win? If my kid is going to shudder, he’s not going to do it with yukky hair and yellow choppers.)