Tics, Tourettes

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.
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acupuncture, Tourettes

Acupuncture to the Rescue: Tics Reduced!

Good news! This post is not as long as Sunday’s “War And Peace” expo Stink is seeing relief already from one treatment of acupuncture yesterday. I am so relieved. He came home calmer, with a 75% reduction in vocals. He still sported major eye rolling and head shakes/head butts, but his acupuncturist says it’ll take a week or so to really get suckers subdued.

I’m lucky as my son’s healer (and the source of my new found hope) is the incredibly talented Martina Eberhard who just happens to live across the street from me. She practices out of a darling 3 bedroom, wood floored, 1950’s cottage home. Her treatment room smells like heaven. It’s about about as clean and professional as any first-rate office park salon. In fact, it’s easier to relax in as the whole house is flooded with a personal warmth. Parking structure and cement? No thanks. I’ll take curbside service and a brick patio.

A few years back, she had come up with a treatment plan and supplements that she was convinced would really give Stink 90% relief. (Video and post here.)We ended up not seeing her plan to fruition because, despite only 20% of her treatment being executed, we saw such drastic improvement. Stink was tired of doing it, also, so we took a break.

Um, the above statement? It’s kind of akin to a bipolar person going off their meds because they “feel so much better!” Suddenly there are freak outs, manic screaming, and all around “What just happened?” despair. Pretty stupid, but let’s not berate ourselves with the past, shall we? Moving on.

As fate would have it, just when I started to lose my brain with tics, Martina mentioned that she saw this article on a teen Miss America who had severe T.S. and was “cured” through acupuncture. The formulas and treatment used on her were the same as Martina recommended for Stink two years ago, inspiring her even more to work on Stink again!

So, with my heart in my hands, tears in my eyes, I said “Yes.”

Full Disclosure: Martina’s rates are more than reasonable for her high level of skills. Check out the above video – she is sticking needles into my kids head and shins! She knows what she’s doing. That said, because of my professional writing background, we are trading service for service. I only mention this because if trades were not an option, I’d pay anyway. She’s that much of a healer. Eberhard did not pay for this review.

Big Take Away: Where there’s a will there’s a way, and sometimes we must get creative to make things happen. We all have gifts – why not use them to benefit one another?

Stink will begin acupuncture three days a week, then taper to two, then one.

Last night we had an impromptu bbq in the back yard. My sweet hubby cooked for us all, including Miss L and Martina. Connection and friendship out trump tics every time.

acu 2

I’ll keep you posted! Meanwhile, is something working for you?

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

Tics, Tourettes

Tics, Faith and Believe.com

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Are you thankful for tics this Thanksgiving season? You’re not? When my son was first diagnosed, I wasn’t either. But today, from a place of experience and growth, I am happy for the character building that has come from this crazy ride.

“How is that possible?” You might ask, before reaching through the computer and throttling me with frayed nerves shot from hearing thirty minutes of throat clears on the way to morning drop off. “I’m terrified my kid is going to be made fun of. Or worse, that this condition will be harder for him than it is for me!”

I get it. I really do. And all I can offer is my own experience, which is this: Six years later, my son is totally fine. Yes, he still tics (last night his vocals were driving me a bit nutty… low gulps and clucks) but he completely embraces with who he is – not a kid with Tourettes, but a kid who creates video games, loves his sister, rocks math class, has a gaggle of geeky computer boys at our house every Friday night and, oh yeah, he tics. It’s a microcosm of who he is in the grand picture.

Yes, people ask him about his tics sometimes. And he always gives them the same answer: “Jesus made me this way.”

I never saw myself as a religious person, but from the vantage point of time, I realize just how much my faith has meant to me and how much it’s shaped my son’s worldview of himself.

I really came to believe that our God is the same yesterday, today and in the future. “Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8.

If this is true, then God does not make mistakes. Which means my son’s T.S. was not an error in the production line of human creation. “For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.…” Psalm 139:13

Oh, yes, does Stink know it.

Which leads me once again back to me. How do I know God’s plan for my life? And how does this relate to Tourette Syndrome?

I know not because someone thumped me on the head with a Bible or dragged me to church. I know not because someone drowned me in holy water and made me accept the Lord to live.

I know from hitting rock bottom in my marriage and my parenting.  It was only when I took a chance that maybe, just maybe, there was something outside of my own spinning brain that was guiding my steps, that I started to heal.

It took a while, but God was patient. Turns out I didn’t have to understand it all at once. I only had to have a little bit of faith.

“If you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible to you.” Matthew 17:20

Ironically, that passage comes from a section in the Bible where Jesus heals a boy with a demon. I have often wondered if perhaps this child did not have “evil spirits” in him but just a bad case of tics that people didn’t understand. I wish I could have been there to hug that boy’s mother and father and let them know that, “Hey, you are not alone. I get it.” (But hey, they got the Big Guy himself. They didn’t need me!)

But it’s you likely do. I definitely do. We all need each other to support and encourage us along this journey. “For where two or three have gathered together in My name, I am there in their midst.” Matthew 18:20

As I begin my new job as the female voice for Believe.com, I am looking forward to sharing my faith as it relates to marriage, parenting and Tourettes. I hope you’ll visit me over there so we can all grow together. (Link to my column when it’s live in a few weeks. Meanwhile, I’m open to a lot of suggestions. I’m looking to make the content more personal, edgy and conversational, like my BabyCenter and Good Housekeeping days, except instead of talking sex and diapers we’ll be talking tics, marriage and Jesus. And who am I kidding – you know I’ll slip in some sex talk anyway. I have just discovered this Christian blogger, and wow, is she good.)

Note: Believe.com is a Christian website, but for those of you who are not Christian, you are welcome also! I’d love to learn more about your background. And of course, I’ll always write here at Happily Ticked Off – because you readers are my first love.

Until next time, hug that ticker of yours today.

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

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Your Twitch and Bitch (Slap)

my kid

I’ve been trolling a lot from my private group lately. There is just so much gold to be mined, I can’t help but share some of the nuggets. I promised my ladies, even though I keep their names anonymous, that I won’t be ‘using’ them forever for their stories.

But sometimes, I can’t help myself. When we share with others, it makes us all feel so much less alone and real. Besides, since my group is called “Twitch and Bitch,” I occasionally have to take advantage of my bitches. (Note to Margaret: I’m sorry. That really was kind of crass. Please forgive me. It’s bad enough that I went through 3 takes of a video I’m making because I accidentally used my kids’ real names. Your security motions are slaying me!)

Now, back to our original programming.

Today in my group a mom – who I’ve known over 5 years – was freaking out over upping her son’s medication. She is nervous about raising the dosage, even though she thinks he needs it, because she’s worried about what will happen if it doesn’t work. She’s afraid she might not be able to handle the disappointment.

I TOTALLY understand this. For you new moms out there, this is so very very very valid. It’s scary. You don’t want to feel you’ve exhausted everything and have no hope.

Even for you old-time TS moms, this is a valid feeling. No one should ever tell you what is okay and what is not okay to feel. But how you act on your feelings? That’s a whole other matter. And again, no one has to take my advice, but I have some anyway. For me, this means being harder on the old timers than the newbies in my group. They are tougher, and if they are not, I make them tougher by giving them a little Andrea boot camp. I call it the Twitch and Bitch Slap.

Maybe you could benefit from this, too. If I hurt your feelings, I’m sorry. Please know it’s for your own good. And if you disagree, feel free to say so! (But it doesn’t change my mind.)

My Note to Old Timer Sad Mom

Here’s you Twitch and Bitch-slap:
 
1. Get a therapist
2. If you don’t like the therapist, find a new one
3. If you don’t like that one, find a new one after that
4. When you find a great therapist, go every week for a year
5. If you’re not feeling better after that, try something new. Consider medication. Consider church. Consider meditation.  Consider a job. Consider exercise. Consider ANYTHING different.
 
I PROMISE YOU. You can’t NOT do what I prescribed and not feel better. It’s not possible. If you feel that it IS indeed impossible, it’s not, it’s just what YOU think about it and honestly, that is of no consequence. That “it’s not going to get better talk” is called depression. There is a cure for depression. Don’t know what it is? Re- read #1 – 5.
 
Take two drinks and get back to me in the morning.
 
Dr. Andrea
* Note about drinking: I’ve done it when the stress has hit. A lot of us have – it takes the edge off. But this is not a mechanism that should be a permanent fix. It’s a slippery slope between “mercy” and “alcohol abuse” and one that I find I have to watch closely. I hope you do, too. (Speaking of, it’s Saturday night and I’m drinking, shhhh, coffee. I know. I’m crazy. If Stink is going to head shake all day – which he’s been doing all week for whatever reason – I figure I can shake from too much caffeine in solidarity. I’m awesome that way.)
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Faith, Supplements and Hope: Welcome!

After everything we went through this summer and last Spring with UCLA and their “wonderful” Intuniv program, Stink’s tics are worse than ever. His focus is up, but what is the trade off? The ability to sit still while clicking 50 times/minute plus, oh this is a fun one, at least three shudders/minute? Should we get on yet another medication to help ease this? Maybe some nice narcotic? And then, down the road, shall we go with an anti-depressant to ease some of the social stigma from all the stares and questions about his tics?

NONSENSE.

I am easing away from this stupid drug and all these ridiculous labels about what it means to have T.S.. I always say it, but far greater than a “classification” for symptoms is confidence, and God bless Stink, he has it in spades.

I am not going down the drug route anymore unless absolutely necessary.

And, as fate will have it, UCLA isn’t returning my call anyway. I have tried, for 2 months, to get a hold of Dr. McCracken, via email and phone. He had promised me, after we thought we found a silver bullet in helping Stink’s tics and focus, to tweak the meds if there was a problem. HELLO THERE IS A PROBLEM! But where is Dr. McCracken? Likely busy with yet another study that is funding his research or perhaps a child with more severe issues than Stink.

Which is fine with me. I wish him no ill will. He is very good at what he does.

But I’m good at what I do. It’s called calling B.S. when I see B.S..

I will moderate these tics with diet and some better supplements and, in three months, I will have good news to share with you!

Until then, please love your kids for who they are, not their tics. They are worth it. Life is short. Our kids are growing up fast. Time, like our kids, is ticking. Don’t let fear and a medical community who only knows “pills” tell you how to raise your kid. If the drugs work for you, yeah! But if they don’t, do not give up hope. There is always another way. And that way, my friends, is perseverance and faith and some mama kick butt humor and strength. We’re all in this together.

Next post: Supplements! We started today. I’ll keep you posted.

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It Finally Happened – The Mean Kid Tellith Stink To Stop Ticking

Tonight I had to write the letter below to Stink’s teacher. Apparently, this is the week of honest correspondence. Spineless salespeople…. ignorant gradeschoolers… at least I knew Stink’s teacher would be receptive.

From our first conversation last year in the halls – before she was even Stink’s teacher – she demonstrated not only humor and smarts but an emotional intelligence that I’d been dreaming of in an educator.

Still, those fears I had when he was diagnosed five years ago – worries that included being teased and harrassed for noises and twitches he couldn’t control – were finally being realized. It was a somber moment.

At the same time, it was liberating. Because although I wished I didn’t have to deal with this, I wasn’t scared. And my son wasn’t too upset either. Sad an annoyed? Yes. But broken? Hardly. The past five years had been spent concentating on Stink’s strength, not his weaknesses. No fourth grader was going to take him down.

So with strength (I fake it sometimes) and lack of fear (anxiety will hit later when I’m PMSing or out of Zoloft or Day 6 of my no nightly glass of vino quest) I give you the letter which all mothers of tickers worry about writing:

Hi –

So I hate to be THAT mom, but I was saying prayers with Stink tonight and he mentioned feeling sad about some kid named Mama Never Taught Me Empathy I’m a Cry For Help who always asks about his tics.Stink doesn’t care if people ask, and he gives the standard, “Oh, I have Tourettes and make tics. I can’t help it!” and that usually suffices.

But apparently this kid keeps saying, “You CAN help it. You CAN help your T.S..” He will move out of line if he’s next to Stink and say he does not want to stand next to him because of the sounds.

There’s 3 things going on in my opinion:

1. Of COURSE people are going to be annoyed sometimes. As a mom, I get annoyed myself but…

2. It’s an opportunity for kids to be more accepting of others.

3. Stink needs to educate the class on his condition. It might make his tics calm down.

Is there any way, sooner than later, my son can have the floor and just give an update to the class on what it is to have T.S..? I can get a video about it if that will help.

Or maybe Stink can talk about it in a PLC? (TRANSLATION for my blog readers: PLC stands for “Peaceful Learning Circle”. My kids go to a fabulous developmental hippy co-op amazing public charter school. They call teachers by first names. They used to have an assistant T.A. who wore mismatched socks named who sported a fro and went by “ChaChi”. I can’t make this stuff up. Now back to the letter to Stink’s teacher.)

I feel bad hitting you with all this on the 3rd week of school. I just want to nip the “social” stuff in the bud now so I can really focus on, well, getting Stink to FOCUS and be the best he can be.

Thank you –

Andrea (and Rex!)

My question for you readers: So what would you do? No, kicking some kid to Mars is not an option. Stink doesn’t want meds for his tics. He says he feels sad, but not enough for more medicine. He thinks this kid just needs to deal with it. Do you? I see both sides, honestly, but most of all, I’m happy my kid is confident in himself. Still… where do I make choices for him where his social life is at stake? You know, like being invited to a party by an ignorant dumb ass who only hangs out with ignorant dumbasses? Oh, wait…

Note to self: Cancel anti-ticking drug order. And congrats on 5 pounds lost! 10 more to go!

Here are my babies at our cabin this weekend. They cracked us up by surprising us with Twin Day outfits in their suitcase. Of course they had no tooth brushes, but who cares? They’ll be old with no teeth but like each other. Let’s see if Ignoramous STOP TICKING bully boy from Stink’s class can boast that. Well, maybe the no teeth part. If he keeps it up, someone will knock his front chopper out one day. I won’t cry will fake compassion for him.

* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts to the NJ Center or guest blog here? Email me at LifeHappins@Gmail.com
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A Cure For Tics! Really! And Pigs Fly! It’s True! (Well, They Sell Cure-Alls!)

I am steaming mad tonight, and it’s not that Stink’s tics are pretty non-stop. Quite the contrary, I am really taking on my mantra: “If you can’t fix the tics, fix yourself.” I am exercising, relaxing, off the wine  (in an attempt to drop 15 pounds) and just counting my blessings.

I’m mad about the response I received from an advertiser who will remain nameless. I will not reveal if this douche bag advertiser sold magic pills, e-books, supplements or therapies for tics. I will just say that they claim to stop twitches and sounds for a fee that’s more than a cup of coffee but less than a pair of Lucky Jeans. (Evasive enough? Good. Let’s continue.)

The ad promises it will work 100% and that their own kid suffered from tics and they can END! YOUR! KID’S! TICS! ALSO! It’s that easy! Wow!!!!!!!!!!!!

I wrote them and said I would do a review for them in exchange for a free product. I was upfront that I could not spend more $ on something that I wasn’t sure worked. “But if it’s all it claims to be,” I wrote, “Then I will shout it from the rooftops and spread the word throughout Facebook and the New Jersey Center for Tourette Syndrome.”

I would run a contest to get him more traffic! It would be a win-win for my son, his wallet, and nervous parents everywhere.

I received a quick response where I was asked for my site stats. I sent him a copy of them. (Believe me – I’m not exactly getting a million hits/day.)

He wrote back 24 hours later with this response. What you see is unedited. The first paragraph is in relation to my question about tic elimination.

His response

From my own experience and from feedback I get from people I would say the following numbers apply:

50% total elimination – it can take anywhere from a week (! but these are rare cases) to 3-4 months

30% significant reduction – and I mean noticeable and significant!

20% no significant change. Although many people say the kids are less hyper and calmer. And happier.

I think you would understand why i am hesitant to commit to your proposal…

Do I send you the eBook, wait for you 2-3 months and then unfortunately your case belongs to the 20% or even 30% and I get a nasty or no review?
My reputation could be damaged unfairly…

YES – i know! The way the sales page appears is as if this is the miracle cure. Sorry ….. so does every other product. 
My website consultant suggested and created it. (the testimonials are real by the way !!!)

If you want I can have (someone) Paypal you some money so it will be a paid post and you can just review the product and mention its existence.
You can also run a contest for a free copy.

I am not doubting your integrity as a writer – i would not want it any other way!
All I am saying is for you to understand my situation and realize that marketing and reality are not always on the same page.

He goes on to say a few more things, then ends it with, “God Bless.”

Where my head spins off its shoulders My thoughts

This person is willing to falsely lead frantic parents down a primrose path and then tell us that we are stupid for believing him since ads are never real. Translation: “We are complete and total frauds, but we need cash. PS: Jesus Loves You.”

My response

Hi Devil Spawn –
 
No problem. I totally appreciate you getting back to me.
 
I suppose I’m disappointed because, even if your marketing director said to do it a certain way, it’s kind of false advertising. Either it works 100% or it doesn’t. Your ad is appealing to people like me who, in desperate situations, will do anything to make their children’s lives better.
 
I think it would be more honorable to tell the truth: This works x amount of times and in x amount of cases. But that doesn’t sell as much product.
 
I don’t mean to sound high-handed. But it’s disappointing.
 
For the record, I would NEVER repeat an email from you or discredit you in any way. I’m not into character defamation of any kind. But I will tell my readers to be aware of ads that promote cure-alls.
 
I would ask you to humbly search your heart and consider revising your statements in your ads. It would add sooooo much validity to you.
 
Again, thanks for your honesty in your letter back. I wish you the very best.
(Note to my own readers: I am only repeating some of their email and gave no names, so I stand by my word.)
Their response

I agree !!!!
In an ideal world…..

I’ll tell you what:
Show me ONE ad/website/print that gives percentages and I will pay to have my site revised and rewritten!!!!

God Bless!

My response back

I do understand. I really do. But this isn’t a cleaning product – it’s placing false hope for a real disorder that affects real people. I understand that you need to make money, but there are some things where it’s more important to do the right thing. THAT’s what God blesses. It’s not a catch phrase or an email tag line. 
 
With all due respect, you should be really ashamed of yourself.
His response back
I’ll never know. I will delete it without looking at it. I can’t waste any more time on this. As the Bible says, “Don’t throw pearl to swine.”
God Bless!!!!!!!!!!!!!!!!!!!!!!!!!!!
* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts? Email me at LifeHappins@Gmail.com and I’ll personally introduce you to the editor. Let’s get Happily Ticked Off and do something to support each other!
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How Is Everyone Doing?

Well, the moment I write “tics are gone” they always come back. But they are still at a minimum and I am very happy with the Intuniv. Stink is still Stink: happy and charming and sometimes a bit toooo silly. But I’ll take that over a flatlined robot.

I don’t know about you all, but I am finally hitting the wall with this summer fun non-sense. If I do one more load of dishes, or fold anymore laundry, only to see it pile up again in the course of one hour, I will lose my brain.

My kids have gotten excessively argumentative and hyper. They need structure. Apparently there really can be too much of a good thing in terms of swimming, friends and hang out time. It’s time for a schedule!

As I type this, 4 kids are running through the house. I normally take them to the pool or the Y or even Grandma’s house. Today? I’m cleaning. My house looks like a giant petri dish.

In closing, I am pretty stoked that I have air condition in this weather! And while I’d kill for a house that has more shelving and a prettier kitchen, I’m pretty darn grateful for what I do have. Pandora music, some fresh coffee, health insurance and a family I love so much I could die? I’ll take it.

What’s new with you?

My fave new song to go with housecleaning!