Thursday, September 20, 2012

Things I did on my birthday


ATE the Big Lebowski burger from Big Daddy's, a whole mess of fried pickles, one or two giant french fries and a cup of red velvet/cake batter froyo (with sprinkles)(and chocolate chips).

DRANK a giant coconut milk latte, a pint of Thirsty Goat Amber, half a bottle of honeydew-hibiscus Hint and a very dirty vodka martini.

TASTED several varieties of olive oil, several more varieties of balsamic vinegar, some honey powder and a spice mix that tasted exactly like fried chicken.

BOUGHT two pairs of thrifted jeans, some barbecue spice rub, za'atar seasoning, mesquite and applewood-smoked peppercorns, and a bottle of coconut-infused white balsamic vinegar.

WORE skinny jeans (!!) and a pair of cute flats I found in the bottom of my closet and had totally forgotten I owned.


ENJOYED the amazing weather, the company of my parental units, the incredibly sweet birthday wishes from P and C and H, a whole heaping bunch of lovely Facebook greetings and the knowledge that I get to celebrate again on Saturday. With cake!

I am a lucky girl.

Friday, September 14, 2012

O hai

When last we spoke about C and school, things were not going well at all. I'm happy to tell you things are much better now, mostly because C is no longer IN school. Well, he is, but he doesn't actually GO THERE anymore. Physically, you know. Now school comes to him in the form of a Homebound Education teacher. She brings him his lessons and assignments, takes completed assignments back to school to be graded, and spends four hours a week with him here at the house making sure he understands everything and helping out where he doesn't.

She is fantastic and since we finalized the decision to move him into this program, C has been happier and less stressed than I've seen him in months. Big ups to our school administrators, who floated this as a possible solution when it was something we didn't even know existed. C met with the Homebound teacher before we got started, just to make sure her voice didn't trigger his misophonia, and everything has been way swell. So, yay!

We've also been doing yet more medication adjustments with C. We've stopped the Intuniv because it wasn't really having any effect at all. And we've been weaning him off the Trileptal to see if maybe that was making his anxiety/sensitivity worse. I do think he's much better now anxiety-wise (though not misophonia-wise), but it's hard to tell if that's from the medication changes or the school environment changes or the fact that some of his therapy modalities have also been adjusted during the past couple of weeks. We have another meeting with the doc who monitors his meds next week so we'll see where to go from there.

Meanwhile I am...

... reading Scott Kenemore's Zombie, Ohio which is so much fun. Guy comes to after a car crash, has amnesia, discovers he's in the midst of a zombie apocalypse, gradually realizes he is PART of the zombie apocalypse, and hijinks ensue. I haven't read a lot of zombie fiction but I can't imagine there's much out there that's more compelling and fun and oddly poignant than this book.

... watching Top Chef Masters and OMG, if Lorena Garcia wins I'm going to burn down a Taco Bell. (Not really.)(But seriously, how annoying is she?!) I am all in for Chris Cosentino to win this thing so, you know, he'd better. In other watching news, Sons of Anarchy is back! But holy cow, the season premier was horrifying. I'm not sure I'll be able to watch this season if it's going to be like that, much as I love this show. I might not be in the right headspace for it right now.

... listening to this song, because C was singing it the other day and now it's stuck in my head on an endless loop. MAKEITSTOP.

... drinking pumpkin lattes.

But not from Starbucks.

... eating apples. Finally.

... feeling so much better now that it's fall. Or almost fall. Or quasi-fall-like. Look, it's September, okay? My pumpkin-shaped basket full of cinnamon-scented pinecones is on the table, it's been cool enough to wear jeans on at least two recent occasions, and my reverse seasonal affective disorder is going away. I'm calling it close enough.

Tuesday, September 4, 2012

Achievement unlocked

I did not realize how much I expected to fail at this whole weight loss thing until I actually succeeded. Somehow in the craziness of this past week, I managed to get within half a pound of my goal weight. And since I feel like I've spent much of the past seven or eight days dodging both horseshoes AND hand grenades, I'm calling it close enough.

I really, honestly cannot believe this whole thing actually worked. Let's get the "before" pictures out of the way and I'll tell you why.

Those two photos on the left were taken in June 2010. I realize they are not terrible, but look closely at my midsection and I think we can all agree that I appear just a WEE little bit pregnant there. Let's call it 5 months. At the time those photos were taken, I was running anywhere from 5 to 15 miles a week. I was actively training for a 5K, in fact. My blood pressure, cholesterol and resting heart rate were all fantastic. My mitral valve had quit regurgitating. I was technically at a healthy weight for my height, according to all the charts. My pant size was in the single digits (barely). But my abdomen and upper thigh area, they were not making me happy.

That lovely lingerie pajama shot on the right was taken on Christmas 2011. I had gained around 10 pounds since the beach photos were taken. I realize the photo quality is poor, but you can tell that I was all lumpy-bumpy-soft. Squishy tum, rolls on my back, thick upper arms, despite not really being HUGE in the grand scheme of things. I had quit running several months before but I was walking rather a lot. I was now edging past the upper limit of a clinically acceptable weight for height. My health was still okay but since I, like most of the rest of you, get older every year, my knees, ankles and feet had begun to complain on a daily basis.

I thought this was simply the price of getting older. I was a woman in my mid-40s who'd given birth twice. A certain amount of "middle-aged spread" was to be expected, right? I have long since made peace with getting older; I like the authority that age brings. I don't mind being called "ma'am". I've come to terms with the fact that most of the professionals I deal with these days were born after I graduated high school. I put on my big girl pants and then went out and bought slightly BIGGER big girl pants, figuring oh well, I am THIS size now. That's okay. That's just what happens.

Then I went bra shopping and found out that I had become a bra size not really found in nature (or at the mall). Worse, while I was able to find bras that fit (at one of those hardcore expensive lingerie shops where they meticulously measure and fit you for everything), I was squishing out the backs of them. Not in a That Bra Is Too Small way, more in a That Back Is SO SQUISHY way. Standing there in front of a 3-way mirror in jeans and an assortment of underpinnings while a 23-year-old size 2 fussed about helping me adjust straps and hooks and tuck in my back fat, something broke in me. I was no longer willing to accept my middle-aged spread. I knew exactly how I'd gotten it (mindless snacking and cocktail drinking before bed) and I became determined to get rid of it.

And, well, I did. Here are the "after" photos, taken yesterday.

When I posted these photos to Facebook, several friends asked me how I did it. I am happy to tell you EXACTLY what I did, keeping in mind that I am no expert on weight loss or fitness or ... anything, really. And also that I had no medical reason to have gained the weight or to have had trouble taking it off. And that, you know, I had less than 20 pounds to lose. This is what worked for me under those specific conditions:
  1. I joined SparkPeople and used the free tools there to come up with the number of calories I should be eating and how much I should be exercising every day in order to lose the weight by my target date (which isn't for a couple of weeks yet). My rate of weight loss ended up being less than a pound a week. So, you know, I wasn't starving or anything.
  2. I used the SparkPeople nutrition counter to log EVERYTHING I ate and drank. I did this for about a month, at which point I felt like I had a handle on how many calories were in the things I ate most often, what my serving sizes should be, and which of the things I ate most often were better choices than the others.
  3. I bought Jillian Michaels's 30 Day Shred DVD (okay, I dug it out of the drawer where it had been hiding since I bought it a year or so before) and I ACTUALLY DID IT. It was very, very hard at first. I had never been so sore or sweated so much in my life. I had to do the modified versions of pretty much all of the exercises. I felt stupid and slow and unfit and out of shape and a little bit maybe like I was dying. I thought, "There is no way. This is for younger, more fit people. I can't do this." But I kept trying and pretty soon, I WAS DOING IT. I was even doing some of the advanced versions of the exercises! After putting in the full 30 days (not all in a row; I usually took weekends off) I realized to my astonishment that not only was I well on my way to losing the pounds I wanted to lose, but my body was starting to change shape. That had never, ever happened and I did not anticipate it at all.
  4. I continued eating sensibly and after I finished the 30 Day Shred, I started alternating weeks of doing Jillian's Ripped in 30 and 6 Week Six Pack DVDs. I not only went down a couple of pant sizes, I went down a shirt size! And, er, probably a couple of bra sizes, too. After finishing Ripped in 30 and 6 Week Six Pack, I started alternating No More Trouble Zones and Banish Fat, Boost Metabolism.
And that's kind of where I am now. The only exercise I've done has come from these DVDs. They take less than an hour per day and only require light dumbells (I alternate between 2, 3 and 5 lbs. depending on what I'm doing, but you could get by with just a pair of 3-pounders) and a yoga mat if your floors are hard. Right now, with all the stress and crazy busy school stuff and the fact that I'm moving into maintenance mode, I'm only working out 3-4 days per week. I'm still watching what I eat, though. Turns out that part was not as hard as I thought it would be. I think it helps a lot that I don't really have a sweet tooth -- I'm more of a crunchy/salty/umami kind of girl.

I have become such a huge believer in weight and resistance training during the course of this thing. Like I said, I was hoping to lose weight, but I did not at all expect that my body would change shape so dramatically. I figured maybe I'd go from looking 5 months pregnant to looking 4 months pregnant, but hello, I DO NOT LOOK PREGNANT ANYMORE! My thighs are smaller, my hips and bust are smaller, I have lost nearly 4 inches off my waist. My jiggly back rolls are gone, and my upper arms are noticeably firmer. This is something that running/cardio alone was never able to do for me.

So yeah. Yay me! I am proud of myself.

Now if only I could take charge of my mental/emotional health the way I have my physical health. I guess that should top my list of goals for autumn, eh?

This is not a sponsored post. All products/services mentioned were purchased by me with my own money. I received no compensation of any kind apart from a SMOKIN' HOT BOD. Heh.


Thursday, August 30, 2012

Typed while hyperventilating into a paper bag

Hey so this first week of school, it is not going well for my boy C. Not well at all. His misophonia has become enormous and all-consuming and so has the anxiety associated therewith. We have added a new medication (Intuniv ER, for those of you playing along at home) and a new therapy modality (cognitive behavioral therapy, WHO HAS BINGO?) and I am sort of wishing I had a time machine so I could skip ahead 20 years or so and see how this all turns out. I like to imagine I would see my kid healthy, happy, gainfully employed, surrounded by friends who love him, married to his soulmate and raising my adorable grandchildren. And maybe there's a dog. And a home studio for his music. And a guest room for when P and I come to visit. (A double bed is fine. Nothing fancy.) Let's all hold that image in our minds and manifest it into reality, eh wot?

The good news is, the staff at his school could not be more fantastic. They are implementing loads of accommodations and reviewing all sorts of possible options and we really could not ask for more amazing allies in all this. People ask us all the time whether we like this school; I think there is some stigma associated with the fact that it's the oldest high school in our district and is located in not the most high-dollar neighborhood in our district. But we freaking LOVE this school and we feel very lucky that fate (er, and some deliberate real estate choices on our part) put us here. I shudder to think how some schools might handle this very real and serious disorder that very few people have even heard of while it manifests in a kid who doesn't even have an IEP. (He does have a 504 plan, though. That has helped A LOT.)

The bad news, besides the fact that nothing we've tried so far has really worked all that well, is that we can't have a sit-down with all the people involved in trying to puzzle out a solution to this problem until next week because all of our schedules are crazy because it's the first week of school. The waiting is the hardest part. (No it's not. The misophonia is the hardest part.)

The more good news is that H loves most/all of her classes and she's making new friends and I think she kind of gets a kick out of the fact that she's in high school now. The more bad news is that I was counting on her riding the bus to and from school since she and C can't ride in a car together (her breathing triggers his misophonia) and apparently her bus driver makes Nurse Ratched look like Sister Bertrille and so that riding the bus thing is not happening. She's been getting a ride with a friend's mom every day and I feel kind of weird about it because I don't know this mom very well, so I haven't really explained to her what the deal is with me not being able to reciprocate on the whole car pool thing. I asked H to explain it and she said she would but who knows whether that will happen. Meanwhile I think maybe we should chip in for gas every week? Or bake them some cookies? Or buy them a new car? What is the protocol here?

And not to make it all about me or anything (™ my mom) but in the midst of all this I've somehow managed to get within about a pound and a half of my goal weight. That stress diet works a treat, but I can't honestly say I recommend it.

So. How are things with all of you? We should catch up sometime.

Monday, August 20, 2012

Dog days


August has not been the most relaxing month ever here in Misophonia Land and full-day summer band did not go as well for C as expected. We made accommodations, we tweaked (and are still tweaking) meds, we made many many phone calls and sent many many emails and, you know, we all survived.

This is our last week of summer here; school starts one week from today. Band is only a few hours in the evening all this week, and in the meantime there are textbooks to pick up and lockers to be assigned and ID card photos to be taken and new therapists to meet. H has "fish camp", the crash course in all things high school that is presented to incoming freshmen, this week and she could not be more excited.

It's finally hit me that I will have TWO in high school this year; both kids at the same school again for the first time in two years. And they won't be at different schools EVER again until C graduates (please God) in two years and goes off to college (please oh please oh please) or stays here for college (that would be perfectly okay, too).

Anyhoo, this last official week of summer seems like as good a time as any to check in with those summer goals I set way back when, eh? Let's go!

1. Lose 17 pounds. I've lost 14. Not bad, eh? I was hoping to lose the 17 by my birthday, which is one month from today. Not sure I'll get there at the rate I've been going, particularly this month with all the stress-snacking and stress-cocktail-drinking, but we'll see. (Also one month from today: the 20 year anniversary of my engagement to P. Best birthday ever!)

2. Read more. Books I've read since the last time I updated you on the progress of my summer goals:  Judith Arnold's Goodbye to All That (light and fun; good beach read), Ben Rehder's Buck Fever (very fun; takes place near where I live; first in a series), Gillian Flynn's Gone Girl (LOVED; extremely dark and twisted and hilarious), Ben H. Winters's The Last Policeman (also LOVED and very much looking forward to more from this author), Carrie Regan's Rumors of Savages (super fun mindless romp; again, a good beach/airplane read). Right now I'm reading Valya Dudycz Lupescu's The Silence of Trees, which is gorgeous and heartbreaking and strangely cathartic, at least for me. It's not often that a work of fiction helps me sort out some of my own emotional junk, but this one has. Go figure.

3. Make peace with the whole shorts thing and quit worrying about how I look in them. Who wears short shorts? I WEAR SHORT SHORTS.


4. Quit buying coffee mugs already (also cute drinking glasses)(also BPA-free reusable plastic cups with lids and straws). I am happy to tell you I have not bought a single drinking vessel in the entire month of August. Er, so far.

5. Shop at the Farmer's Market every week. Um, no. They open at 8:30 a.m. in the summer! All the good stuff is gone by 8:35! How am I supposed to sleep late AND get a workout in? (I like to think I make up for not shopping the summer market all that often by shopping the winter market like crazy, when all they have is kale, kale and more kale and I more or less have the whole market to myself. Yeah. That's the ticket.)

6. Eradicate hornworms from the face of the Earth. I found one on the remains of my Patio tomato plant the other day. Yeesh. I really need to pull out those tomatoes; they've been done producing for ages now.

Alrighty! Time to knuckle down, get busy, and try not to freak out about school starting next week. Yeah. Good luck with that, me.

Thursday, August 2, 2012

Unwinding the despair spiral

Hello, I had hoped to tell you this week that our August is starting out AWESOME, that C is loving the heck out of summer band and doing great on the new meds and that everything is super hunky-dory and we are all excited about school starting later this month.

But you know what they say about hope. It's the thing with feathers that gets shot right out of the sky with a 12-gauge, or something. I'm pretty sure that's how that goes, yes? I never was a big Dickinson fan. (If you giggled when you read that last sentence, you are totally in my tribe.)

Somehow summer band has kicked C's misophonia into high gear. I've spoken with his doctor and we're going to tweak his meds to see if they are part of the problem. We've also spoken with the band director and will be putting some accommodations in place. We will deal with this. We will, we will. And I will step away from googling "distance learning for high school credit", "homeschool marching band", "distance learning for college degree", "legitimate work at home opportunities" and "house for sale with garage apartment". There, I have totally set myself up for ALL THE SPAM COMMENTS IN THE WORLD.

But hey, let's not talk about all that. Nor about the dream I keep having where thousands of tiny objects are spilling out of containers and I have to sort and count them all and put them back where they belong, nor that dream I had about the tornadoes, nor the fact that C and I arrived home from an aborted attempt to get through summer band this afternoon to discover that the dog had been Very Ill Indeed in our absence. All over my favorite rug. Yeah.

Let's talk about some things that are good. Okay? Can we do that? I'm going to. I think maybe I need to.

Here are some things I am enjoying these days, in no particular order:
  1. Avocados. I seriously cannot get enough of them right now.
  2. Level 2 of Jillian Michaels's 6 Week Six-Pack DVD. Holy cheezits, that is the hardest workout I have ever done. I freaking love it.
  3. La Croix flavored sparkling water. I have only just discovered this product (much like Columbus discovered America) and I am hooked. No calories, no sweeteners of any kind, no caffeine, but less boring than plain water.
  4. The Last Policeman by Ben H. Winters. A large asteroid is six months away from colliding with the earth, world economies and infrastructure are collapsing, people are killing themselves left and right, but police detective Henry Palace is just trying to do his job. Loved this book; it was quirky and weird and actually kind of sweet.
  5. Clothes shopping. I have not only gone down 2 pant sizes (well, 2.5 now, which is awkward), I've gone down a shirt size as well. I no longer hate trying on clothes, which is good, because I no longer can buy clothes without trying them on.
  6. Breaking Bad. It's back, and I am so happy. Except this is the last season, which makes me sad. But this is the happy list, so I'll just say that if they were to spin off a series of just Jesse and Mike hanging out in cars being badass, I would totally watch and enjoy that.
  7. Popcorn. The old-fashioned kind, popped in coconut oil on the stovetop and sprinkled with a bit of seasoned salt. I'm getting pretty much all my carbs in popcorn form these days.
  8. Big Bang Theory. I am very late to this party and I know everyone else is kind of over it, but somehow this show has become my comfort TV viewing.
  9. "Why Am I The One" by Fun. It's not a particularly happy song, but it makes me happy. Go figure.
  10. The sun is moving south. I can see it happening. This means fall is coming and my reverse seasonal affective disorder is GOING AWAY. Real soon now. I just know it.
Well, I've had so many interruptions that it's taken me about 5 hours to write this, so hey! I think it's time to publish. Talk to you later.

Thursday, July 26, 2012

School starts in 4.5 weeks











(I swear, 50% of my Instagram photos feature me holding something, 25% are foods I'm not holding, 15% are photos of my dog, and 10% are random things including but not limited to clouds and sunsets.)

I think I dreamed earlier this week that I'd updated my blog and told you all about C getting his wisdom teeth out on Monday, how he fainted and had a hypertonic seizure when they put in his IV and how it took him nearly two hours to recover enough that we could bring him home and how he couldn't keep anything down all day long until the doctor phoned in some anti-nausea meds (which caused him to throw up AGAIN before they finally kicked in and started working).

But I guess that didn't happen, the updating part. The rest of it did, but C is fine now, so maybe my brain wrote it off as a nightmare and decided it should stay in my subconscious with all the other Scary Moments In Parenting. Which is just fine with me. Drinking away the trauma has worked great for most of my adult life, why stop now? Heh.

Our summer has been all 1's and 10's with nothing in-between. Either we are crazy super busy or completely, utterly in relaxation mode. It's been good, mostly. I'm hoping we can work in an actual vacation of some sort, a few days at the beach maybe, next year since this is our second summer without anything like that. I don't want to complain or anything, and I'm not even particularly a beach person since I regard large bodies of water as basically giant fish toilets, but every now and then I feel compelled to make a pilgrimage to the Gulf of Mexico. Just to make sure it's still there, and that one can still drink slushy rum drinks and eat fried coconut shrimp with one's toes in the sand.

I think we're all looking forward to the routine of school again. Not long to wait now. H and I went school clothes shopping today totally on the spur of the moment and got her a ton of cute stuff while actually staying within our budget, which almost never happens! She is super excited about starting high school next month. C starts summer band on Monday and that is effectively the end of his summer, which he doesn't seem to mind one bit. We've been holding steady on his dose of Trileptal while he's recovering from the whole wisdom tooth thing, but he should be at his target dose before school starts and we are super excited to see how he does with that.

Yep. It's all good.

Friday, July 20, 2012

Summer of storms






It rained here every day for more than a week. And by rain I'm talking lightning, thunder, high winds, unrelenting downpours, power outages and, on at least one occasion, hail.

I spent five terrifying minutes trapped in my car in our driveway a couple of Mondays ago, watching our flag pole snap off and go flying, a large branch crack in half in the tree closest to my car, and quarter-sized hail pound against my east-facing passenger side window at more than 60 miles per hour. As our squatty, thick-trunked live oak trees whipped back and forth like Willow Smith's hair while horizontal bands of rain twisted and cavorted off to the west in the wake made by my car, I remember thinking to myself, "Is this a tornado? Am I in a tornado right now?" I thought I was gonna die, y'all.

But I didn't, and now we're back to sun and humidity and the hills are alive with the sounds of chain saws and wood chippers. The narrow streets of my suburban neighborhood are clogged with roofing and fence repair trucks, and I think we're all realizing that compared to the storms (and resulting power outages) that have been hammering much of the rest of the country this summer, we got off pretty easy. But still: yikes. No more of that, please.

Other stuff going on with us right now:
  • Tonight is the opening night of H's play at our local community theater! We saw a preview on Wednesday and it was fabulous and she was wonderful. I am so excited for/proud of her.
  • Fingers crossed, but the Trileptal seems to be working for C! It doesn't keep his misophonia from being triggered, but it does seem to dampen his reaction to his triggers. We're still nowhere close to his target dose so this is very encouraging. I'll be sure to keep you all posted.
  • I'm less than 6 pounds from my goal weight. Booyah! I'm still working my way through a stack of Jillian Michaels fitness DVDs and I continue to freaking love them. Right now I'm alternating Ripped in 30 (I'm on Week 4) with 6 Week Six Pack (I'm about to start Level 2). They are so hard, but they only take 30 minutes a day and the results have been amazing.
Alrighty, then. C and I are off to buy him lots of soup and pudding and whatnot because he's getting his wisdom teeth out on Monday. The fun never ends around here, yo.

Friday, July 6, 2012

Summer 1978: A day in the life

I am 11 years old and my brother is 9. We live in an Ohio suburb made up of lower-middle income families where most parents work blue, pink or low-level white-collar jobs. When we roll out of bed in the very late morning, our mom is just returning home from the breakfast shift at a local restaurant. Dad works more conventional hours, so we won't see him until dinnertime.

Mom visits with us briefly before heading off to the bedroom for a long nap. My brother and I scarf down bowls of cereal and decide what we'll do on this hot and sticky day. The windows are thrown open and box fans whir in the doorways. It's cooler outside than in. We pull on shorts, t-shirts, sneakers and steal a pack of my mom's Merit menthols from the kitchen cupboard where she keeps them (right next to Dad's Benson & Hedges, which are nasty), along with a box of Ohio Blue Tip matches. The screen door bangs shut behind us as we run out into the front yard.

Past the driveway, our side yard slopes sharply down lilac-covered banks to a small creek. There's a huge concrete tube under the street that allows the creek to flow from the woods across the street into our backyard, where it joins with another creek that runs behind all the houses on our side of the street. We head down to the cement tube first, to see if any of our friends are already there. They aren't, but someone has written on the inside of the tube with a chunk of drywall. We write our names, mine in big bubble letters. We never walk the full length of the tube to the other side of the street, too freaked at the idea of getting caught in the middle if there's a flash flood, or if the mean kids from the circle street try to corner us.

We scramble up the opposite creek bank into our neighbor's yard, where there is a path leading back into the woods. We follow it across the creek in back, stepping carefully on mossy wet stones, and climb slightly uphill until we get to our forts. These are natural structures formed by the funky growth patterns of wild grapevines. They've grown into hut-like configurations and there are three of them -- one for me, one for my brother, and one for my best friend who lives on the other side of us. My fort is best because it has a swing -- a vine that has looped down from the canopy overhead, then looped back up again. It's plenty strong enough to hold me, but if I try to actually swing on it the whole structure shakes like an earthquake, threatening to come down on me. So it's really more of a seat. My brother's fort has a seat, too -- a vine that has grown up from the ground and then humped back over again to form an upside-down U. My friend has the crappy fort, because she lets us push her around like that.

We decide not to smoke the cigarettes and instead hide them and the matches in my fort under some leaves. Then we walk back down to the creek and follow it until it the woods begin to thin out. That means we're approaching the farmhouse where old Shotgun Annie lives. No one's ever seen her, of course, but she has shot at some kids we know with a pellet gun while they've been fishing for tadpoles in her pond. Word is she shoots salt pellets -- nasty. We spend some time goofing around in the creek, daring each other to walk out into the open so the old lady can get a shot at us. Then we walk back up the creek until we reach our backyard.

We're bored, but we don't want to go inside. Instead, we walk up the street to see if any of our friends are out. No one is, so we keep walking until we get to the sidewalk that leads to the neighborhood elementary school. I went to this school for third and fourth grade, but that was when we lived in another neighborhood and I had to ride the bus. My brother goes there now and gets to walk. He'll be starting 4th grade in the fall, and I'll be starting 7th at the middle school.

We meander up the sidewalk until we get to the chain-link fence that surrounds whatever mysterious external machinery is connected with the school. Furnace? Generator? We don't know. It's hot there, so we keep walking until we get to the school. There are a couple of cars in the parking lot. We walk around the outside of the building, peeking in all the windows, marking out the classrooms we've occupied in the past. The classrooms look weird over the summer, like some kind of school museum with everything in suspended animation.

Eventually, we make our way over to the loading dock. This is where all the supplies for the school are dropped off and stored. Today, we're in luck! They've had a delivery of pop bottles for the machine in the teacher's lounge. The rolling metal gate is halfway open, and absolutely no one is around. I stand guard while my brother darts inside and grabs two bottles of Orange Crush. We hide them under our shirts as we run breathless back to the chained-in machinery, popping the bottle caps off with the aid of the wire fence. We suck down warm, overly sweet pop and feel not at all guilty, just a little scared that we'll get caught. The ground here is littered with bottlecaps. We aren't the only thieves in the neighborhood, and all of our friends will be jealous that we scored today without them.

We walk back down the sidewalk toward home, tossing the empty bottles into the woods along the path, where they clink against other long-ago discards. Halfway between the school and the street where we live, we turn off the sidewalk and climb over a metal guard rail onto the dead-end street below. We walk along the street furtively, counting houses, trying not to be seen, until we reach the house we're looking for.

It doesn't look like anyone's around to yell at us, so we dart through the backyard and into the cover of the trees. A couple more steps and we are at The Cliffs. It's a huge sinkhole, maybe 30 feet deep, big enough around to fit at least six or eight houses. There's no fence around it -- nothing whatsoever to keep people out. It's a favorite hangout because of the danger factor. If you're not brave enough to climb down the rocks to the bottom, you're a wimp. I once saw the toughest kid in school chicken out while halfway down and my friend's brother, who was two years younger, had to help him the rest of the way.

My brother and I walk along the rim, quietly, peering down to see if anyone's already there. It looks deserted so we make our way to the easiest path down, the one that takes a little longer but won't drop you straight onto a huge slab of rock if you misstep. He goes first because while younger and smaller, he is much tougher and braver than me. And I am faster than him -- if he falls, I can run and get help more quickly than he can if our situations are reversed.

We make it down to the bottom and run around giddily for a while, happy to have the whole place to ourselves. It's a little like the fantasy of being locked in the mall overnight. We OWN this place! Woo! After running around like idiots, we start searching out all the hidden places where we know people like to stash stuff. We find an old harmonica, a bunch of bottlecaps, a lighter that's out of fluid, some stained and torn Wacky Pack trading cards. Finally we get hungry and climb back out, running along the dead-end street to the guard rail, hauling ourselves back up onto the sidewalk and then walking down our own street toward home.

Mom is awake, smoking a cigarette and talking on the phone to Grandma. The menthol smell makes me want one, and with a warm glow I remember the pack I have stashed in my fort. If she notices it missing, she doesn't say anything. She fixes us a couple of bologna sandwiches and some chips and Kool-Aid, and we're off again.

By now my friend next door is home, so she tags along with us. She's jealous that we scored pop at the school and wants to see if there's any more. We are dubious as to her ability to come along without all of us getting caught, but work out a plan whereby she will wait at the fence, I'll stand guard and my brother will grab the bottles.

It's so hot that the tar in the pavement under our feet has formed little bubbles. I love the sound they make when I stomp on them so I zigzag all over the road to catch them all, even though I know my mom will have a fit if I track tar into the house.

By the time we reach the school again we're dripping with sweat. To our dismay, the gate to the loading dock has been closed and locked. All the cars are gone from the parking lot. We walk over to the playground and drink from the outdoor drinking fountain as a last resort. The water is warm and metallic and slightly orange in appearance so we sip only as much as we think we'll need to keep from dying of thirst. As we walk back down the sidewalk, the cool shade of the overhanging trees is very welcome. My brother and I dart off into the woods, dodging bees, to produce our discarded bottles as proof that yes we DID TOO get pop today. Look! There's still a little bit in the bottle! That would be dried by now if the bottles were old.

My friend wants to go to The Cliffs but we are hot and cranky and we know we'll have to help her climb out again, so we veto the idea. Back on the street, we decide to chance picking blackberries from the side yard of our across-the-street neighbors, who are universally hated because they have slightly more money and think they're better than the rest of us. We step off the road a couple of houses up the street, keeping to the edge of the woods so we won't be seen. It looks like no one is home, so we pick and scarf berries at a furious rate, taking even the slightly unripe ones so the hated neighbors won't get any at all. We move slightly deeper into the woods and pick mulberries, which are not at all ripe, and eat those until our stomachs hurt.

We cross the street, pass the sour cherry tree in our side yard (even WE won't eat THOSE cherries) and swing down into the tube under the road where the creek runs. We show my friend where we've written our names with drywall, and she adds hers as well. Then we head into the house for more Kool-Aid.

It's too hot to ride bikes, so we decide to walk back to the forts. It's cool and shady here, but the mosquitoes are out and about. We fish out the hidden pack of cigarettes and pass them around, lighting up and waving them about in hopes the smoke will keep the bugs away. We make a show of puffing at them but none of us inhale. The cigarettes make us lightheaded and goofy and we speak in whispers even though we're far from any houses. We stub out the butts in damp loam and cover the evidence with wet leaves, replacing the pack of menthols in its secret hiding place. The afternoon slowly turns to early evening and we nearly doze, me in my grapevine swing, my brother lying on a fallen log, my friend sitting cross-legged on the forest floor with her back against a tree.

We hear my friend's mom calling her for dinner and say our farewells. It's getting dusky and the bugs are out in force, so my brother and I make our way to our backyard. The dog is chained out under the black walnut tree so we play with him for a bit, and then our mom calls us in for supper.

Dad is home, wearing his "home" clothes but still smelling of air conditioning and machine oil and cigarettes and soap. Over dinner he asks us what we've been up to all day and we say, "nothing." After dinner we go out in the front yard, which we're not allowed to leave at this time of the evening, and see if anyone we know walks or rides their bike past our house. My friend comes outside again and gets permission to play in our front yard, and a couple of kids ride by on bikes and agree to join us. We play Kick The Can with a freshly emptied beer can my dad gives us and make tons of noise.

Finally it's dark and our moms call us inside. My brother and I take baths and watch a scant half-hour of TV in our pajamas before being sent off to bed. When we think our parents aren't paying attention, we sneak into each other's rooms and lie there in the dark, talking and acting out elaborate scenarios with our stuffed animals. When Dad tells us for the tenth time to STAY IN OUR OWN ROOMS, and threatens to shut our doors (the horror!) to keep us there, we crawl into our walk-in closets, which back up to one another, and quietly tap Morse code messages to each other through the wall.

Finally, one of us gives the signal that means "I'm tired -- good night" and we crawl into our beds, drifting off to the sounds of TV and crickets.

Monday, July 2, 2012

A misophonia update, or I medicated my kid today

(Actually last week, but who's counting? Oh, right. We are. Very carefully.)

We liked this doctor. We had seen him before, years ago, when another doctor told us H might be bipolar. This doctor didn't think she was, and we agreed, and then he dropped our insurance plan and that was that until he showed up on our insurance plan again years later (read: now), just when we were thinking that things with C might need to be kicked up a bit (or A LOT), treatment-wise.

So. We were sitting there in his office, C and P and I, only C wasn't hearing anything because he had his fingers in his ears, because P was talking. He can't risk hearing P talk, you see, because P talking is one of his triggers. H breathing is another one of his triggers, but H wasn't there. Normally C would have ear buds in, listening to music on his phone, but he had broken his phone two days before in a violent misophonia rage during his second-to-last day of summer school, when someone near him was chewing gum.

(That was a bad day, a day when the summer school principal, who is C's vice principal during the regular school year and one of his "safe" people at school who knows what's going on with him, tried to call all of the emergency numbers she had for C but wasn't able to reach any of us. Fortunately I got her message just moments later and was able to rescue C and set measures in place for the next day, his last day of summer school, and that was fraught with angst on all our parts but it worked out okay, only his phone still was broken.)

So P was talking and I was talking and C had his ears plugged tight but mostly the doctor was talking. He had consulted some colleagues on C's case, had thoroughly examined the diagnostic results and our family history and C's symptoms and C's own personal history, and we talked about electrical activity and temporal lobes and people with autism spectrum disorders having rage responses to stimuli, and then he told us there were three different classes of medications that have shown a lot of success in treating stuff like this.

Three. Different. Classes.

Oh, you guys. I wanted to cry. I didn't realize how much hope had completely deserted me until I felt it spark up again. I felt exactly the way I felt when we were told C had Asperger Syndrome: this is a real thing. It has a name. Doctors know about it. And they know how to treat it.

So the doctor told us about the three classes of medications. He told us the one he'd like to start with, and he told us the exact medicine within that class that he'd like to start with, and he told us why (high efficacy, low risk of side effects), and then he stepped back a bit. He told us that he felt confident recommending this course of action, this medication, but that it was entirely up to us. Did we want more diagnostics first? Did we want to wait a bit, do some research on our own on this particular medication?

P and I looked at each other, and we looked at our son, our boy who is almost a man, who was coiled tighter than any spring with his thumbs jammed into his ears, afraid to even look at us because then he'd just KNOW the sounds we were making and then he'd be off in a blind rage, screaming and throwing things and punching walls.

And we both had the same answer: a year ago? Yes. We would want more tests. We would want to research all this before making a decision.

But now? Today? After watching C self-destruct before our eyes for the past year-plus? After all the reasons you've told us why this makes sense for our individual kid? Write the prescription. We'll start it tonight.

I know that whenever a parent announces that she's decided to medicate her child, it opens up a giant can of worms. All sorts of well-meaning people feel qualified to sit in judgement, to lament how many kids are medicated these days, to rail against a society that makes it okay and even desirable to numb oneself out, to render oneself compliant and complacent. So I'm bracing for that, and while I do not at all feel the need to justify P's and my (and C's, because his input was essential) decision to anyone, I'm not sure I can adequately express the degree to which this was NOT a hasty decision. It was an easy decision to make in the end, but it's one we've been going back and forth on for literally YEARS. Since before the misophonia. Since before the Asperger and Tourette diagnoses. If anything, one might argue that we waited too long to medicate him, that he suffered while we dithered. That wouldn't be entirely accurate either, but I can see where someone who didn't know the intimate details of the past 16 years of our lives might think that.

In the end, for me, I had to reach a point where I knew beyond the shadow of a doubt that I was 100% making this decision FOR C. Not for me, to make him easier to parent or to keep my heart from breaking on a daily basis. Not for his teachers and school administrators, to make him easier to handle and less of a disruption in the classroom. Not for the people who don't know us and see him flip out and wonder what's "wrong" with him. For C, because he is miserable. Because he is emotionally broken. Because he has been through so much in his life, and maybe this ONE THING can be fixed, or made easier for HIM to deal with. When I asked him how he felt about trying meds -- and this was before we even knew there WERE meds that could actually help, but I asked him again after Thursday's appointment -- his exact words were, "I will try ANYTHING. Anything to make this stop."

And so that's where we are. The drug we're trying is Trileptal (generic name: oxcarbazepine), an anticonvulsant medication that's most often used to treat epilepsy. C does not have seizures as far as we know, but his EEG shows electrical activity in the brain that is consistent with a seizure type of disorder. (I have no idea whether that's true of all misophonics; it would be interesting to know.) He started on Thursday with a VERY low dose and we are very slowly stepping that up over a period of weeks until we get to the target dose for his body weight. So far he hasn't had any side effects; neither have we seen any improvement with his misophonia. We're continuing with both neurotherapy and with the neurotransmitter support supplement that C takes (a combination of l-theanine, GABA and 5-HTP) so that we can isolate any effect, positive or negative, of the Trileptal. And soon we'll likely be adding cognitive behavioral therapy back into the mix.

If this doesn't work, there are other things we can try, and that is so exciting to me. Because it wouldn't be exaggerating to say that these past few months, I have been in despair. I've been wondering if C will actually be able to make it through high school. I've been wondering if he'll end up dead or in jail. I've been crossing things off the mental list I had prepared for his future: Live in a dorm at college? Scratch that. He could never have a roommate. Live at home but go to regular college classes? Hmm, maybe not. College students chew gum and eat in class. Look what happened in summer school last week. Live at home and do some sort of distance learning program? Maybe, but can he actually get a degree that will help him make a living? For that matter: Have an actual job where he has to work with other people? Who knows?

Maybe, JUST MAYBE, someday soon I can erase those scratch marks and start adding things back to the list.

As for the biggies: Have a conversation with his father? Be in the same room with his sister? Take a car or plane trip with the rest of the family? Eat at the same table as us for holiday dinners or even just daily meals?

I'm not ready to think about those yet. But now I can hope.