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.