Does anybody want any flotsam? I've gotsam.
Does anybody want any jetsam? I can getsam.
I can play chopsticks on the Wurlitzer,
I can speak Portuguese like a Berlitzer.
I have gray hairs now. That's plural. So let's not pretend it hasn't been long since we last talked. Let's not pretend some of you aren't glad I now have the mature silver of wisdom flowing through my tresses--you know who you are.The gap between then and now hasn't been filled with all bad, though.My boys have seen the Pacific Ocean. And Minnie Mouse. They've climbed rocks in the Rockies and learned geometry...they've grown into their relationship with the Divine, able to bring up Jesus in everyday convo (as in: "Can I ask Jesus for a new 3DS XL with Motion Control--or is that greedy?") and they've become--God help me--tweens.We're alive after all. And kicking, though I not as high as I used to. Hub passed the benchmark of 40 with grace and aplomb. He's only mildly forgetful--not so much that he needs post-its to remind him to take his pills, but enough that he can't remember what sugary sodas taste like and doesn't pine for them anymore (unless he's sneaking it behind my back, getting a fountain drink fix at the local dive bar, a Pepsi cheater!).Skeeter's deaf and blind. He still does the Happy Dance across the rug on his back after a good breakfast though.Birdie left us for Dog Heaven, a rare cancer, aggressive and quick.And another nephew, David B.,34 years old, gone Home too soon.That's just a taste. I haven't abandoned you...I would never. You're etched on me like runes on a stone, my love song to the internet: www.wearenotalone.com.See you soon!
You know the cable show, right? An almost maniacally fearless and unshaven guy soils himself while wrestling a grizzly over a wild salmon and then makes himself a fresh set of shorts out of supple birch bark parchement? Well, today's the last day of school for Toe and Roo, so that's kind of what going on over here for the next 12 weeks. And we don't even have cable.
We do, however, have a preparedness box. But before you get all What a great and creative idea! and Holy fantastic mother, Batman!, remember that Pandora had a box too, and opening didn't turn out to be near as fun for any of us as she had maybe planned. I'm not 100% sure. You'd probably have to know the whole story, like the number and ages of the kids Pandy had, and how dead she had become inside.
Anyway, "The Summer Sanity Challenge" (as Hub likes to call the endless yawning void between school years) really starts long before we open the box. Actually it began back in April when we found Toe standing before the big school calendar and singing (to the tune of 100 bottles of Beer on the Wall):
49 days of school on the wall
49 days left of school
when they're done
it's time to have fun
that's the vacation ruuuuuule!
while wearing only a pink "Cancun" tee with tropical flip-flops on it, underpants and pink plastic kittykat sunglasses. That's about the same time Roo dug out his fishing pole and started sleeping with his arms wrapped around it like a lover.
Good thing we're not rookies, and are wise to the fact that as parents you really have to "test the waters" of summer vacation early on in the spring, You have to introduce "fun" and "adventure" and "lawless disregard for the established schedule and the power of authority" in small, gradual doses, kind of like the rabies vaccine.
We did our "day trip" trial run to the Laura Ingalls Wilder homestead and Museum in Walnut Grove, and the worst that came out of that was misdirected urination and some of the banks of Plum Creek being flung downriver. Hub lost his forearm hair and a little eyebrown in our backyard bbq trial, and there was only a little trespassing and illegal destruction of a protective native plant in our "bonding with nature" exercise. Our "festivals and events" practice was a little dicier when Roo tried to take home a life-size animatronic baby Trodon from the MN Zoo Dinosaur Trail, but I think we're ready. Go ahead and pray for us anyway.
"You load 16 tons and what do you get?
Another year older and deeper in debt.
St. Peter wont't call me 'cause I can't go.
I owe my sould to the company store."
Wednesday marks 15 years of wedded bliss for Hub and me. The above isn't really "our song," but we often pretend it is. You should see the expressions on friends' faces when they ask us if we have a "song" and we start singing this and mime shovelling. The uncomfortable grimaces are so worth the lie.
And, okay, I took some poetic license and it's actually titled "16" tons and not "15," but give me a break. Merle Travis stole credit for the whole dang song in 1947 from a poor Kentucky coal miner who actually wrote in the 1930s as "9 to 10 tons." A story of long-term debt bondage is universally understood, give or take a ton.
If you want to know the truth, our actual "song" as a couple isn't that much more upbeat. We heard Nancy Griffith singing Trouble in the Fields at an outdoor concert when we were dating and loved it. Apparently Hub decided then and there that if he were ever to face the sort of trouble the farmers in the song were suffering, he'd want me to be his plow...or mule. Thus, a marriage--and perhaps a bad omen--were born.
So, Happy Anniversary, my man. We're still just a couple of union-affiliated, pro-labor, anti-poverty b-siders breaking rocks and sod toward the future. Who knew it would be so much fun?
Toe with his most recent accolade and an enormous "Sonic Dollar" (real world value about equivalent to unsolicited advice)
Toe's about to kick the first grade to the curb and he's done well there. He has as many awards as Mark Zuckerberg has lawsuits against him, although both these young men have gotten equally big for their britches if you ask me. Large brains and alotta lip in fancypants sneakers: that's what Toe and Mark have in common.
Of course Toe had a whole team of people who helped him stretch his legs in the rat race of grammar school. They put the "battle" in "Battle Creek" and we heart them all:
Ms. Alissa runs the show and always goes that extra mile for her students. Her classroom luncheon dates with Toe, $94 bills and ability to bounce are legendary, she knows just how to control a beast with a snuggly hug or a stern teachery frown, and according to Toe she always "keeps the growl of the hungry bear quiet" in his belly. Thanks to her and Ms. Annie, Ms. Vi, Mr. Ty, Ms. Shannon, Ms. Laura, Ms. Woods, Mr. JT, Ms. Erickson and Dr. Wilson (who posseses a genteel English voice and magical ability to quiet 300 kids with the ballet-like raising of a single finger)...just to name a few of Toe's BCE BFFs.
Well done! Second grade, here we come!
Toe, the shortest, palest, pinkest honoree of the day, walks with a rockin' step toward the future
So just in the last few months "science" news has said that autism is caused by a gene, an anti-depressant, a plastic, a vitamin deficiency, fever, electronic devices, heavy metals, older parents, vaccines (again--thank you, stripper mom for autism Jenny McCarthy, this one will never die), gluten, antibiotics, cow milk protein, and prematurity (to name a scant few theories). Yes, basically the same old group of people talking the same old nonsense and still in need of a beating with the cluestick.
Science now also wants us to know they now believe austism makes a person highly unlikely to believe in God.
And all God's people said, "Hmmmmph!" (and some other things which are mostly swears and don't really reflect well on God's people, so I will omit them here).
Listen. I have 2 (T-W-O) autistic children and I can tell you this: I never ingested any of the suspected autism culprits while my buns were in the oven, I didn't suck on heavy metals or BPA plastics (well not any more than the average pregger) or have a cell phone strapped to my head 24/7, 34 ain't old and there isn't an autistic kid or neurological birth defect in my genepool all the way back to the Laplanders. If there is a scientific reason my kids have ASDs, well you haven't found it yet. Keep looking. I'd start with Pepsi products, though I can't say why.
And as for God. There's not a study in the world that can measure the purity in the heart of a child, nor see the tiny little ember within it that burns only to love and grow up in the great truth of Christ.
Toe, 7, (who as autistic is also believed by scientists to likely "not understand abstract concepts") said the following on Easter 2012 while sitting in a swing alone and talking to his chocolate bunny:
Hey, Easter Bunny, do you know what Easter is really about? It's about God who made the world and everything in it--like people and animals and stuff--and how he made the darkness and the light, and he separated the darkness from the light, and he said the light was good. And Jesus was the light, the best part of everything, and he's the King of Easter. so that's about it, but I still like you.
Science, sometimes you"re really wrong and you really suck. But I still like you.
Tom and Huck survey the banks of Plum Creek
"When you fish for love, bait with your heart, not your brain."
LEGO basketball player minifigures come with what LEGO dorks call "bounceback legs." These are special edition spring-loaded legs which allow the little hoopsters to rebound solidly and automatically when given a good agressive shove.
Well, I'm a dork for hope. Love is my bounceback legs.
In the few short months that 2012 has been on the books, I've been tackled pretty hard. There's been death, destruction, illness and mayhem. Literally those. If you know me well, you know the tragedies and losses have been of a magnitude such that were I to write a fictional story about them, no reader would be able to suspend their disbelief. It's a life beyond fiction when such things would happen to one person, one family.
So I'm declaring this summer the summer of love. It's gonna be my grass, man. Watch me roll in it. Slurp it up like ice cream, swim in it like a river, sleep under the starlight of it, read it, write it, wallow in it and give it. It's gonna be my endless prairie under my bounceback feet.
big feet on the prairie
Fruit-loopy, or just loopy?
Roo's high, and it's working for him. After about 2 weeks on "amphetamine salts," a dissolving version of Adderall (chocolate-milk-soluble being the one form of oral medication that won't ignite one of Roo's spontaneous puking events), the mania of Roo's pronounced ADHD is slowly coming under control. Now instead of whack-a-doodle, self-abusive phrases uttered in bug-eyed, jittery discomfort--including the following:
~"Mom, I belong in the recycling bin! Cycle me!"
~"Go away! I am closed for the day!"
~"Just throw me away! I'm stupid!"
--Roo has returned to a more calm, contemplative weirdo:
~"Mom, what zackly means the difference between a 'battle' and a 'fight,' and which one best for killin' dragons?"
~"I goin' to my room to read deez books here about fellyentologists and stuff."
~"Dat's awright, Mom. Tovi can beat me up if he wants to. It's fine."
Treating Roo's clinical ants-in-the-pants has been a grueling 2 years of trial and error, sad little forays into both alternative therapies and the pediatric Valley of the Dolls, sleepless nights and days akin to living inside a human pinball machine. We are happy to see our little reverse speed-sniffer is now only moving slightly faster than light, and able to focus more intently on the important things in life.
hophead Roo unlocks his creative side and uses googly eyes to represent Big Brother's creeping invasion of man's privacy (or maybe they're just supposed to be manjugs)
Ruby say, " RELAX." Also, "bring me some chocolate-covered Fritos..I haz the munchies, bro."
Being on dope doesn't mean a boy don't have the zip for a little xtreme living room badminton booster ski.
Which is to say, though I don’t eat pork or beef, I must confess my love of devouring the occasional American wiener (sidenote: talk about “wiener” as a misnomer, I have been to Vienna and can tell you with some confidence that not one single person I met there would ever eat the American delicacy know as a hot dog, not even with a side of Sachertorte served on exquisite china in the Sacher Hotel itself). And because a wiener isn’t a wiener without it’s slightly sweet, doughy bedding material and built-in serving dish, I even eat a real bun, fully glutenized, allowing inflamed epithelial cells to form in my small intestine and twist me into a bloated Bavarian pretzel of pain. Mmmmm...pretzels. Well, that’s another blog.
I am a traitor to holier vegetarians than I, yes (but I am hardly the only one: you animal-loving, organic flax-wearing Hindu cheaters have also confessed your “wiener exceptionalism” on numerous occasions to me and you know who you are!). Tsk, tsk shake your head. Tell my gastroeneterologist I am a self-destructive lying leaky gut, go ahead. Weiners are special. Wieners equal fun and family and life. Give me wieners or give me death. So to speak.
Think about it. Do we serve wieners at funerals or parole hearings? No. The wiener is the blessed guest of the fireside campground sing-along, the little league game, fireworks in the park, state fairs, block parties (except on Top Chef Chicago, but what does someone with a name like Padma Lakshmi really know about American cuisine anyway?). Everyone loves a wiener, even the notoriously picky population known as kosher rabbis, who take time off their hushed study of Kabbalah to bless the casing-free oinkless nummies known as Hebrew Nationals. Amen and L’Chaim!
Speaking of religion. Wieners have even led me to add to that long list of things I must discuss with God, which includes:
1) why so many people choose to tell lies in hate rather than the truth in love (even to themselves)
2) while I know everything is designed with a purpose, what exactly is the purpose of the one inch hair that perpetually grows out of my right big toe
3) though I have heard from some dancing , squeeze-boxing Wisconsonites that in Heaven there is no beer, will there indeed be hot dogs there (or Wisconsinites?)?
Even non-eater Toe, whose food repulsion wouldn't permit him to touch a skin-toned tubular meat sandwich with a ten-foot pole will regularly ask for hot dogs for dinner, "With one squiggly yellow line of mustard, please." The boy will gape at that glorious item on his plate, fascinated, knowing on some deeply animal level that it is the source of gastronomical joy, even though his autistic sensory alarms are blaring and sending his gag reflex into spasms. The boy won't eat the wiener, but he clearly loves the wiener as thing.
In American dance, hot dogs dance, they wear hats and tap shoes, they have love songs devoted to them. Hotdog is a verb of showboating and the modern American interjection equivalent to huzzah! People, we do not sing, "If I were a sauteed chickpea patty, everyone would be in love with me."
Now that I got that off my chest, be aware that the famous Chicago Dog will be opening a MN flagship wienery in Stillwater this coming April Fool’s day 2012, and if I am being punk’d by the internet, so help me I will bring down the world wide web.
for Ms. Alissa, who tipped the scale
In my opinion, until you've had to make a decorative reward chart detailing the place and frequency of your first-grader's kerplunkens, blown repeatedly on the surface of an ice cream cone to "warm it up" (in 100 degree heat) so your child will deign to take a lick, or made a nosy and autism-ignorant adult bully cry using only your words, you haven't really lived.
And that's just a regular Tuesday.
As an ASD parent, I am at once a complete idiot adrift in a changeable sea of mystery and an encylopedic savant who has seen everything in the world. On a regular basis I am called upon to employ the skills of the following (and not just for my own personal clan, but for my people, all the other idiots out there fighting the same fight):
--specialist in DAPE, OT, PT, ABA, CSG, CDCSG, CARS, ECSE, DHS, SSD, PECS, CFGF, ADHD, IDEA, IEPs and occasionally EMT. OMG, WTF?
--help desk manager
--boo boo fixer
Really, the list goes on and on. It will bore you to tears, if you haven't already toggled over to Boing Boing or Pinterest for something with more shizzle already. if you aren't someone with an email question waiting in my inbox or a person on my callsheet, this may be absolutely no interest to you at all. But it has been pointed out to me painfully and frequently that we autism parents are all such idiots as this...and as such we are sorely in need of a guide.
And I'm going to write it.
I know, I know. With everything else I have to do, why would I even try?
Here's why: the estimated 69.5 million of these in the world, and those of us who love them:
Wisconsin replicates the Chinese New Year lantern tradition with huge glowing corporate orbs
I know, I know. I haven't been a reliable blogger lately. Full disclosure: I have been referring to 2012 as "The Year of the Draggin' Ass." Yes, that's technically a swear,* which I generally avoid using, but I think 2012 deserves it. January has burned me with dog eyeball removal, arm neuropathy that makes me feel like I am swinging two flaming pythons from my shoulders, cheeselesness, a 5 year old who uses the phrase "this is how I projectile vomit" accurately in a sentence. So far, 2012 has left me in a slump. Feel my wrath, 2012, you strike me more as the butt of a donkey.
Speaking of donkey butts: more about me. I was born in the Year of the Cock (not a swear), a Chinese zodiacal sign which claims I am "blunt in the offering of opinions." It also says my best career choices are "the armed forces, banker, insurance agent or CPA" (cue the snorting), so I'm not sure how reliable that all is. At any rate, 2012, watch out for my opinionated, in-your-face rooster ass! I tell it like I see it. Chinese New Year, you make me want to say, "Wǒ de qìdiànchuán chōngmǎn le shànyú!" Yes, "My hovercraft is full of eels."
Still, I have 2 beautiful human children to mother--one of them a rabid dragonophile--and must carry on. Thus we have "enjoyed" a fair amount of Chinese New Year revelry in the past weeks. Hudson, Wisconsin's "Hot Air Affair" and Year of the Dragon Festival was one. Picture a nightime field of fire and a ice, lit with the magestic "moon glow" of hot air ballons, the air rife with the mouth-watering scent of such traditional Chinese delicacies as deep-fried cheese curds, scalding hot cocoa, jumbo pretzels, cinnamon-sugar Indian fry bread and steamy beer brats. Qǐng màn yòng!
Better yet, picture this:
ballon pilots who feel the night is too windy to inflate their crafts blow giant torches into the crowd instead as a "safe alternative"
when Toe asks (with alarm), "Why are all these firemen here...is it dangerous?" we say, "Naw, they just really really love to see crowds of people playing with giant torches."
Toe, toasty warm, filled to the gills with "Chinese hot chocolate," and blissfully ignorant (like most of Wisconsin)
Roo, high atop Hub in the "safety seat," is no man's fool and keeps his eye on the ball (of fire)
*Note to potential (*rolls eyes*) publishers: when you make my blog into a book, I promise to clean up the language. However, elaborate lies and broken promises shall remain protected strictly under the "poetic license" clause.