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Today I Practice What I Preach…

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

Yup, just another weekend of tics and noises, and yes, after hearing them over and over, I got a wee bit exhausted.

CONFESSION TIME: Dearest vocal tics, I am sorry for finding you annoying. I wish I didn’t feel that way. There’s a mom who I read about over on some Facebook T.S. page, who just thinks all your clicks and throat clears are awesome. “They are just so adorable,” she squeals. Um, sorry, I don’t. Why? Because I want to hear my kid tell me a story he is writing about the Magic Egg without having his sentences disjointed every other second with this squelched honking sound.

CONFESSION TIME TO ANYONE READING WHO HAS T.S.: I must come off like a total boob. To be fair, let me tell you that if you hang out with me enough, you’ll get tired of my crazy non-stop talking, my annoying “vintage” clothing that has me often looking like a polyester Minnie Pearl, and my butt that seems to be getting bigger with each passing day.

ellen and me

 

CONFESSION TIME FOR ME: I know that I am doing a great job with my boy. Why? He still so happy and thriving. Tourettes is just one more opportunity for me to focus on what is truly important – the soul of my child. The heart of my family. When I get distracted about noises, I only need to remember my Friday wine companion, Ellen (above) who, despite being in an auto accident when she was 18 and living life from a chair, is one of the most kick butt human beings I know. She teaches at our local Cal State. She bowls, surfs, swims and posed for Hugh Heffner ( a full spread… oh my) back in the day. She doesn’t let a few things like, oh, walking, stop her.

And I won’t either.

TAKEAWAY: To pretend something doesn’t bug you just to look better to other people who might judge you for having negative feelings… that’s lame. It’s fine to vent. But here’s my personal conviction: don’t just vent and run. (Have you ever been around someone who farted and left the room? Not pleasant.) Release and then clear the air! (In the cases of gas and tics.) Speak your thoughts but have a plan for restoration – if not for the tics – for you. How are you going to take care of yourself so that maybe the noises don’t bug you so much? How are you going to discipline your child, tics or not, so that they grow up to be healthy members of society? Are you willing to accept that, twitches or not, your kid might have amazing gifts and change the world anyway?

Just a few random thoughts on this manic Monday. AND, I’m proud to say, my ass is 6 pounds lighter since this photo. I blame Ellen for making me push her butt up our school walking ramps. Great for the arms, too.

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated. (For some reason, there are a decent smattering of comments over there this week on this post. Nice parents for you to connect with!

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A Messy Situation

It’s been two weeks since I posted? Really? How did that happen?

Oh, yeah. My patience was buried in the kids’ bedroom under their shared space:

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My sanity was buried under Stink’s storage unit crap hole desk:

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And somewhere along the line I permanently lost my brain among toys and games that had missing pieces and migraines from having their parts shoved so hard into shelving they couldn’t be wrenched out with crow bar:

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Thank God Farmer Stacey – a dear friend I met from my Baby Center writing days because, you know, I was such and expert in parenting duh – gave me some super helpful advice in dealing with kids and their stuff. She promised it would make my life, and theirs, so much smoother. Here are some excerpts from our conversation.

Day 1

Me: You are raising 5 boys under fourteen years old  in a 1000 square foot house. You seem more calm than I am. Like, smoking the doobage drinking a carton of Two Buck Chuck a Day calm. What’s your secret?

Farmer Stacey: We are minimalists.

Me: Sounds good to me, but how do you do it?

Farmer Stacey: You need only tell them three words.

Me: I Love You?

Farmer Stacey: Throw It Out.

Me: But their three words will be, “But I can’t!”

Farmer Stacey: And your three words will be, “Then I will.”

Me: Huh.

Day 2

Me: I don’t want my kids to be consumer culture knuckle draggers. I pride myself on their thrift store clothes and shared living quarters. I don’t know how realistic it is to get rid of so much stuff. I mean, we’d have to toss 50%.

Farmer Stacey: From the looks of those pictures, more like 75%.

Me: But that leaves maybe two shelves for them each.

Farmer Stacey: Sounds about right. They’ll have to actually make choices and get rid of stuff they don’t use.

Me: But what about their opinions on stuff?

Farmer Stacey: Let them decide.

Me: But what if something is special?

Farmer Stacey: Let them pick their favorite.

Me: But what if everything is important?

Farmer Stacey: Then it’s not really special.

Me: But what about their feelings about it all?

Farmer Stacey: (Huge laugh) You crazy L.A. self-esteem folk. (Gasping for air) Life is about choices! You’re not hurting them. You’re helping them learn to regulate. You could hire a maid like a lot of people and strip them of their ability to be independent and organized, or you can teach them.

Me: That’s a bit extreme. One of the best moms I know homeschools. Her kid is brilliant. She has a maid and her kid is far from spoiled.

Farmer Stacey: Are you willing to shell out the money on a maid?

Me: No.

Farmer Stacey: (A la teacher) Then you have to make a choice.

Me: Am I one of the kids now, too?

Farmer Stacey: No condescending meant. I have tons to get better at, too. But the fact remains that making decisions – from defending space to working on diet – is hard.

Me: Huh.

Day 4

Me: My brain is spinning… I suppose we’ll start first with… I mean…. Huh. I think I’ll just sit here, avoid writing, overeat and implode.

Day 5

Me: So I am ready to implement. The room is in such a state, it’s going to have to be done in phases.

Farmer Stacey: Sounds awesome! Send me pics of your progress!

So I did.

But first, there were tons of tears.

And then, we came up with the idea of a garage sale to sell some of their junk treasures.

And then I told myself, not dissimilar to tics, that this clean-up thing was not for the faint of heart.

I started to see it as a marathon, not a sprint.

I made up a plan to get it done, and stayed consistent. I decided not to yell, scream or lose my cool in any way. After all, what’s the point of organized perfection if you ruin relationship in the process? It’s about balance. “No, you can’t have ten thousand Legos. Anything that doesn’t fit in the bin has to go….”

legos 1.jpg

“But yes, you can keep your stuffed animals, space hoggers or not! I will have Papa build us a shelf. But until then, let’s clean up the floor.”

So we did.

legos

And then I about passed out with joy at the delight of seeing wood! (Not that kind of wood, you pervs.)

You might wonder why I’m spending all this time talking about room cleaning. For me, it’s because when the tics are up (right now? non stop vocals) I need to remember that my kid has some pretty amazing gifts that Tourettes can’t touch. And I can’t really have him working on those (writing, reading, playing piano) when there is so much crud he can’t find his sheet music or books.

I write this because, in getting rid of things we don’t need, we can make room for new and beautiful memories. (Like going to Disneyland tomorrow! Yes! I’m still an L.A. consumer! I don’t live on a farm and I am fine with that!)

And I document this because there was a time before the Tourettes.

Before all the junk of life piled up.

A time when I just had two little babies and a very spartan nursery and the world unfolded in front of me like a dream. All was going to be as shiny and hopeful as the freshly painted walls. My dreams would sparkle like the stars on their border.

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And guess what, Tourettes or not, they still do.

cute

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

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“He’s Very High Functioning” and other related Ugggsss

My overall goal is to make Sundays a day of rest. No offense God, but I do that for me as much as I do for You. I need to unwind with my favorite people. It’s a day to come home to a fridge full of food that I have already bought, change into fat pants, and do whatever the heck we want: Hang with friends, see family, have a few laughs.

Instead, we oversleep. It’s frantic. The kids have barely eaten breakfast. Clothes and books and small plastic toys that have no home are strewn over the bedroom. I so desperately want their living space to reflect their minds: Organized. Creative. Thoughtful.

In a fantasy land, they’d live in this

this

In reality, they live in this

(Oh, wait! I can’t show you, because I can’t find my camera because of my own huge mess and that is the point! I need to get my discipline on.)

With some patience, and this is my goal, I’d be content if we could just get it to this

realistic

 

Ten million thoughts race through my mind:

“Stink is ticking. He can’t have milk with his cereal! That’s dairy! But maybe the noises are just to drive me to the brink of insanity because of the strep issues he’s been having. Or lack of sleep. Oh, hell, it doesn’t matter, he tics! And I have nothing else to feed him, so milk it is!”

“Their room needs a complete overhaul. Yes, new paint, shelves and fancy toile containers will contain their nonsense and prove to the world how superior I am at mothering.”

“I know! To be a superior mother, instead of buying them exterior goods to cover up mess, why don’t we just spend the day cleaning up so they can develop internal tools!”

“Well, shxxx, can’t be that mother today. We have too much to do. Instead, I will just have to practice breathing and remembering that a messy house does not mean I am a bad mom. Instead, we are having real experiences outside the home, and more important.”

“Okay, who am I kidding? This place is a shxxhole.” (Sorry, Margaret, for cussing. )

“I know! I will get a part-time job to put toward a lovely room! I can get a maid and have order!”

“But then… really… how realistic is this? I wouldn’t be around for the kids. Why don’t I just finish my book? That will make some money for me!”

“Even better… why don’t I just remember that God loves me for who I am: Imperfect. A bit scattered. But generous and kind (for the most part) to my little piggies lovely children… which leads me back to church once more.

For a moment, I actually feel better.

But then… this happened.

Enter: Sunday School.

Stink is going to join the bigger kids this week. The 4th and 5th grade boys look like members of boy bands. Stink is wearing an Elmo shirt and has shaggy hair. He’s happy. He’s adjusted. But he’s ticking. So I do what I always do. I tell the new teacher the drill: “Stink has tics. (Enter part where I seem like an over achieving defensive mom) He’s super smart and has loads of friends, but sometimes he makes sounds like a muffled duck a few throat clears. Don’t worry about it.”

I get interrupted right away. It’s less rude and meant to be more assuring. “No worries,” says the chipper leader. “I already told the other teachers he is super high functioning.”

What? High functioning? As if… he’s autistic or something?

And that leads me to anger and frustration.

Yes, about a month ago he threw himself on the floor in protest to a boring lesson and not being happy about a toy being taken away.

Yes, he sticks his feet in the sand when things don’t go his way at times.

He is argumentative and very rigid and uncompromising with change.

Yes, these are traits of… drum roll please… say it slowly…. High… Functioning… Aspergers.

And yet, they are also traits of a strong-willed kid. They are signs of someone who is bright. Who knows what he wants. My kid is funny and kind and doesn’t have issues making friends.

Oh, there goes the defense again.

Why do I care if he has or does not have something? Why does a few words from a Sunday school teacher, who was nothing but kind, get me so crazy?

How neurotic am I?

After months of feeling like I was moving ahead… that we had a routine at home and, yes, a clean room, and good communication with the kids and very few tics… everything has gone to the hell.

And yet, isn’t that life? Isn’t that like tics? You have ups…. you have downs. You are good days with perspective… and bad ones with pity parties.

I’m not depressed. I’m just a bit overwhelmed. There’s a fine line between loving your child for who he is… and living in denial. And yet, if my son is content and thriving at school, how is that denial? Isn’t that just a bit of Mama being defensive?

Perhaps I share too much on this blog. Perhaps I’ve done my kid a disservice by being so open about his T.S.. I mean, if I’m going to throw it out there, I’m going to get the comments.

At the end of the day, or the beginning as the case is, I’m going to have to go with peace. My son is at peace, so must I be.

We do need some more discipline here at home, so I’ll be focusing on getting my house together and getting the kids to contribute more. We need a schedule. We need a routine. We need early bed time. Those high functioning parents and children thrive on routine, don’t they.

The takeaway for you and me: T.S. or not. Special needs or not. As a mom, I need some order. Because with some order, I can focus on my children’s gifts, not what the world or I so desperately want to label them.

How about you? Do you feel overwhelmed or are you in a good space?

Let’s talk about this!

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Who Has an Awesome Neuro in PA, NJ or NY?

christiandior

I received an email from someone who found my posts at the New Jersey Center for Tourette Syndrome. She lives in Hopetown, PA and has a son with mild T.S. symptoms that get worse in Spring. Anyone have a great neuro they can recommend in either PA, NJ or NY that you LOVE LOVE LOVE – especially considering the distance she might drive? What about a homeopath or environmental doc?

On a side note, my son’s tics have been up lately. Spring seems to always bring them on, along with some more impulsive behavior. For you new moms out there, don’t panic. He’s not screaming obscenities or knocking down random toddlers in play areas. (Sheessssh… T.S. can get some pretty bad press.) He is, however, much more obstinate. He’s not as quick to listen. He’s moodier. He’s shorter with his temper.

Oh yeah, he’s ten.

With a zit on his nose.

Um… me thinks the teen years loom close.

Can’t blame everything on T.S., now can I?

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

* Pic above has nothing to do with the post. I just want it. It’s by Chritian Dior and it’s so fabulous! I might look like a six one drag queen. Or a menopausal mermaid. Since my Topanga T (my bff) and I are watching our words, however, let me just go with forest nymph. It’s all good until small animals start pecking my toe nails.

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One of These Kids Is Not Like The Other

“One of these things is not like the other…” That used to be my kids’ favorite Sesame Street song. They’d squeal with joy when one row of boxes containing 3 apples and oranges rolled by, while another box contained 3 apples and a banana. So similar, yet so different!

Perhaps you, too, can play this game with my children.

Pip’s Suitcase

1

Stink’s Suitcase

2

Pip’s version of arcade game playing

3

Stink’s version

4

Pip’s version of hat wearing

5

Stink’s version

6

While I’m stoked to say that no one laughs at Stink for a few tics, our family finds him pretty hilarious. He really brightens our lives.

Pip finds him pretty darn funny also. She’ll even tie his shoes for him. 7

After all, shirtless arcade play is exhausting. Plus he’s got those 100 pens to organize in his suitcase.

The takeaway: If your kid is eccentric like mine, like Stink’s treasured Scooby Doo suitcase, you better roll with it. They only get more eccentric with time. (And thank God. It’s so much more fun.)