More on misophonia

Oh hey, I totally forgot to post this last week when people actually told me about it. Apparently the ABC news program 20/20 recently ran a segment on misophonia. (For more about our experiences with misophonia as a family, read here and here.) It was really, really excellent. C said it was the most accurate picture of misophonia he's yet seen in the media.

Here's part 1:



And part 2:



 NOTE: If the videos aren't working in your feed reader, please click here instead.

I could easily see C's case getting as severe as that of the girl in the first segment had we not started in with the neurotherapy and neurotransmitter support when we did. In truth, even with all those interventions, we are about 80% of the way there on his worst days.

HUGE thanks to ABC News and 20/20 for such a well-done segment on this still little-known but truly life-altering disorder. And even bigger thanks for releasing a safe-for-misophonics version of the segment with most of the trigger sounds edited out (those are the ones I've embedded/linked here).

One more day

My kids only have one more day of school. Just one, one more, and then it will be summer. Holy crap. I'm not sure I'm prepared.

My brother was in town over the weekend and that was awesome. He came in to surprise our mom for Mother's Day, but the real surprise was that he got his dates wrong and bought a plane ticket for the following weekend instead. Heh. The first night he was here we all went to dinner out at the lake and it was pretty sweet. I hadn't been to the lake in years and years. I pretty much spent the entirety of 1982-1984 there doing things that ultimately could have gotten me killed, for the most part. Now that I'm an old fart, I am pretty content to just LOOK at the lake while sitting on the deck at Uncle Billy's, eating a brisket Brewben and drinking a Hill Country Organic Amber or three.

I have been cooking a whole lot, mostly on the grill, and making coldbrew, except this morning when I went to filter it I discovered this batch was haunted. You see the little ghost face up there, right? Freaky.

Because I know you're on the edges of your seats about it, here's how I'm progressing with my summer goals so far:

1. Lose 17 pounds.
I am down a little over 4 pounds, after paying more attention to what I shove in my pie-hole and also doing the Jillian Michaels 30 Day Shred for the past couple of weeks. I know when I told you all I wanted to lose weight, those of you who know me or have seen photos of me were all, "Bitch, please." And I get that. But the thing is, I have gained like 30 pounds in the last 10 years. The first 10 or so pounds were okay; people no longer felt the need to tell me how skinny I was and how much they hated me for it (can you imagine saying, "OMG, you're so fat, I hate you"? not nice, is it?) so that was good. But those last ~20 pounds ... they hurt. Physically. So I need them gone. Which means I need to stop inhaling giant bags of peanut M&Ms, apparently. Oh woe.

2. Read more.
Well. I am not doing so hot with this one. I gave up on A Prayer For Owen Meany because holy crap, that's a long book and I sort of stopped caring. Then I started John Steinbeck's Travels With Charley in Search of America but I sort of abandoned that one, too. That's a temporary abandonment though; I fully intend to get back to it, it's just that I've been distracted by Marion Nestle's Why Calories Count and I am super duper geeking out over it, food science nerd that I am. So. Now that I think about it, I guess I HAVE been reading more. But perhaps I should have pledged to actually FINISH more books. Therein lies the challenge.

3. To no longer give a damn how I think I look in shorts and just wear them, already.
Yeah ... nope.

4. To quit buying cute new coffee mugs before we need to add on a room for them.
Yes! I have succeeded at this.  I've been buying cute little rocks-sized drinking glasses instead, which we also do not need. *facepalm*

5. To shop at the farmer's market every single week. 
Running about 50% with this one. I'm going this week for sure though, I swear.

6. To eradicate hornworms from the face of the earth.
Haven't seen a single one since I picked them all off by hand and sprayed the plants with Bt.

It's a pretty good start, yes?

Okay. I think I'm ready. Bring on summer.

In the garden

Lots of doings in the garden right now. I'm growing four different varieties of tomatoes this year: Bush Goliath, Tumbling Tom, Patio and Husky Cherry Red. All are well-suited for containers, which is how I grow 'em. The Patio bush was nearly decimated by the recent hornworm invasion but it has recovered nicely, as have the others, and we've been eating Husky Cherry Reds and Tumbling Toms for a couple of weeks now (also: plums, which are finished for the season) (and herbs, always herbs).

Very much looking forward to some big slicing tomatoes, figs and pecans later this year! Woot!

In which my midlife crisis unfolds before you

Hello, I am a little bit hormonal. You didn't need to know that, but oh wait maybe you did, because it sort of has everything to do with why, when I saw a recipe in my Twitter feed for "Lentil Salad with Goat Cheese Crostini" moments ago, the very name of that dish made me want to punch somebody in the face. And I like lentils AND goat cheese! That is the type of hormonal we are talking about here.

Son C, as you know, goes to therapy twice a week for his misophonia and anxiety. These appointments happen in the evening so he doesn't miss school. This week he was supposed to have a marching camp for band every day after school so we scrambled to reschedule his appointments around them (his therapist only does evening appointments three days a week), but then oh hey guess what, marching camp was canceled at the last second. So we re-rescheduled the appointments. And then he was supposed to have a band concert next Thursday, so we rescheduled his appointment for that night, but then the band concert got moved to Friday so we re-rescheduled that appointment yesterday but now this morning they scheduled a rehearsal for Thursday so now I have to re-re-reschedule and/or cancel the appointment and this sort of thing has happened approximately 4,853 times this semester and OMG, I think we just broke the space-time continuum. We may actually require a TARDIS or at the very least a tricked-out DeLorean and/or Christopher Lloyd to make all this work.

So that's been making me crazy.

In other news, all this time I've been blaming Bruce Springsteen for screwing (or Brucing, as I like to call it) up a bunch of Manfred Mann and the Earth Band's songs when it turns out that all along it was MANFRED MAN stealing BRUCE SPRINGSTEEN'S songs and making them BETTER. And that's when I discovered that I only like Bruce Springsteen's stuff when it's not him singing it. Which I guess means that I kind of hate Bruce Springsteen. AND I NEVER KNEW! Weird.

Also, the other day my mom and I went thrifting/antiquing and I bought an owl:

Right now his name is Five Dollar Owl, even though I paid $5.50 for him, but I'm thinking of changing it to Herman. Or Wilbur. Or Erichthonius.

Yep. Time to go breathe into a paper bag some more.

May days

If you have school-age kids then I don't have to tell you that May is sort of insane. When they're little it's field day and science day and fine arts day and field trips and class parties out the wazoo. When they're older, it doesn't get any less busy, I'm sorry to say. Between AP exams and end-of-course exams and plain old regular exams and band concerts and banquets and 8th grade prom and theater performances and getting signed up for summer classes and whatnot, school is trying to give me an ulcer right now. Thank God it's almost over. (Although summer isn't looking much better, with summer classes and summer band and wisdom teeth extraction for C, oy.)

Hey, remember when I set some winter goals (making more homemade granola, taking more photos, drinking more chai tea)? Those didn't go all that well, at least not while it was actually winter. I don't think I even set any spring goals, and now spring is over, at least here in central Texas. So I've been thinking about summer goals and right now mine are:

1. To lose 17 pounds. Oh yes. It's time.
2. To read more. A LOT more. (I am reading A Prayer for Owen Meany. STILL, in case I've told you this already. I feel like I've been reading it forever.)
3. To no longer give a damn how I think I look in shorts and just wear them, already.
4. To quit buying cute new coffee mugs before we need to add on a room for them.
5. To shop at the farmer's market every single week.
6. To eradicate hornworms from the face of the earth.

I think I can hit a good 50% of those. It's a start.

Special needs parenting

Imagine someone is relentlessly and continuously chucking molatov cocktails at your child. Not in any regular pattern, just haphazardly, so you never know when to expect them. Sometimes you can see the bombs sailing through the air from fairly far away and can quickly throw a makeshift shield -- your own body, if necessary -- in front of your child. Other times they come from out of nowhere with no warning -- crash, scream, flames. This isn't some sort of punishment for past deeds. Your child is absolutely innocent and undeserving of such a thing. It just happens. Just one of those things that happens to a random minority of people. No one is to blame. It's the luck of the draw.

Your only weapon against this relentless firestorm, your only hope of helping your child, is ... a thimble. Tiny, fingertip-sized, it holds maybe a couple of milliliters of liquid. Oh, and the nearest water source? It's 10 miles away, surrounded by an electric fence and razor wire, and owned by someone who is armed to the teeth, devoid of empathy and reason.

So the bombs come, and your child screams and burns, and you go running with your thimble that whole 10 miles, as fast as you can. You can see the water there, a whole lake of it, but you can't reach it. It's off-limits to you. You ask, "Please, may I fill up my thimble? My child is burning!" But the person who owns the water doesn't believe you. "Your child isn't REALLY burning. And even if he is, how bad can it be? Why should I take your word for any of this? Bring me a letter from an expert on fire who will swear that your child is, in fact, burning."

So you run back, all the way back, the whole 10 miles with your empty thimble. Maybe the flames have gone down a bit on their own. Maybe a kind soul has stepped in and tried to dampen the fire. Maybe, miracle of miracles, a tiny, temporary trickle of water has been discovered nearby! Or maybe the bombs have continued to fall and there is no other water and things are so much worse.

You find the expert. He can't evaluate your child for months, maybe even a year or more, and meanwhile the bombs keep falling and your child keeps screaming and burning, but finally you get that all too valuable piece of paper. You run 10 miles with your empty thimble back to the water.

"Look, the expert says my child is burning! Please, can I fill my thimble in your lake? Just one thimble full of water?"

But the answer is no. "I need more information. Is your child on fire ALL the time, or just some of the time? When he's on fire, does it keep him from performing ALL of his basic functions, or just some of them? How do I know your child is burning enough to really NEED the water? And anyway, what have you done to fireproof your child? You have to help yourself, you know. You can't expect other people to do it for you. Oh, and what are you feeding him for breakfast? Are you married to his father? Did you take drugs when you were pregnant? Here, you'd better fill this out. In triplicate."

So you do. You fill out the forms. You explain about the fireproof clothing and the shields and the safe rooms and all the things you've done since the day the bombs started coming. But there are so many bombs coming all the time. There is just too much fire. Just a little bit of water would help so much. But the answer still is no. "Other people need that water too, you know."

Now you have to actually bring your child the 10 miles to the lake, your child who is on fire. So you run 10 miles back home with your empty thimble. You grab your child and struggle to carry him the entire 10 miles back to the lake. It takes ages and ages. Maybe the flames go out on the way and your kid is just a burnt husk but not actually on fire by the time you get there; that means no water for you, regardless of the objective certainty that the bombs will never stop coming. Maybe you get "lucky" and your child is completely engulfed in flames when you reach the lake. Then -- and ONLY then -- are you allowed to fill your tiny little thimble and throw a few drops of water on the fire. That's assuming you can afford to pay for the water. Oh, did you think it was free? No, silly. You have to pay for it. Probably more than you can afford.

But if you need more water than that one thimbleful? Or if it takes you a while to get the money together to pay for it? Well. Be prepared to repeat this process all over again from the very beginning. Every last miniscule step of it, for every tiny little thimbleful of water you need. While the bombs keep falling.

Sometimes good things happen. In your 20-mile round-trip journey to the lake and back, you see other parents running, limping, dragging themselves along with their own thimbles and their own flaming children. At first you keep a wary distance from one another. Pretty soon you find yourselves nodding and waving. Before you know it, you're trekking along together, comparing notes on where any creeks or ponds might be located and which doctors make the best burn ointment.

Every now and then the clouds lift, the angels sing, and the lake gets a new owner who takes one look at your battered thimble and your scarred hands and says, "Kid on fire? Right. I can have 50 gallons delivered to your house, free of charge, every week. Let's see how that goes for a few weeks and then re-evaluate. Sound good?" But these reprieves are rare and always temporary. Before too long you find yourself once again making that long trek, thimble in hand, clutching your burning child.

And you just keep on doing it, carrying that thimble wherever you go in case you find water closer to home. You do it over and over and over again until you are exhausted, and sometimes you get so numb that the crash of the bomb doesn't even make you jump, and you hardly hear the screams, and you barely feel the heat. Other times the flames lick out in your direction and you burn and scream right along with your child, feel your skin blister and peel, and not a drop of water to be found. Either way you find yourself time and again halfway to the lake, soot-streaked, clutching your thimble, before you're even fully conscious.

You keep doing it because you love this child more than anything in the world. Because he is worth a thousand million treks to and from that lake (barefoot, over broken glass). Because he's done absolutely nothing to deserve what's happening to him. Because you're all he has. And because the only thing worse than continuing is the thought of what might happen if one day you just stopped and let him burn.