reverse speed 02/23/2012
 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. Add Comment "I don't hog. I hot dog." 02/16/2012
 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 and 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. the complete idiot! 02/15/2012
 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): --psychopharmacologist --behavioral therapist --neuropsycologist --dietician --music therapist --lobbyist --ninja --CFO --PCA --BFF --advocate --specialist in DAPE, OT, PT, ABA, CSG, CDCSG, CARS, ECSE, DHS, SSD, PECS, CFGF, ADHD, IDEA, IEPs and occasionally EMT. OMG, WTF? --grant writer --empirical scientist --medical researcher --research librarian --naturopath --speech pathologist --motivational speaker --help desk manager --court reporter --paralegal --adaptive technologist --private investigator --Toe whisperer --boo boo fixer --doodie coach 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:  the Year of the Dragon 02/07/2012
 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. Our Autism Odyssey: 7 million dollar men 02/04/2012
 In 2006, a little over a year after Toe was born and about 4 months before he started showing signs of autism, the Harvard School of Public Health released a study that estimated it costs about 3.5 million dollars to live a lifetime as autistic in America. This esitmate included everything from traditional therapies and educational supports for ASD kids and adults to special home life needs and lost wages. Dang, that's alotta dead presidents. Now you know why I hashtag a lot of #insomnia at 2 a.m. on twitter, why "DIY" is not a hobby phrase around our house, and why I am currently wearing a pair of pants from 2006 (but, hey, at least I am wearing pants!). Really, earning and putting aside money for our kids' life needs around here is like trying to fill the ocean with an eyedropper. I know you people with neurotypical and healthy kids feel some of the very same worries too, and I half expect that by the college years all of us with kids will be bidding for "higher education" on ebay or maybe haunting Craigslist to score a cheap seat in "Intro to Micro Economics." I read somewhere it's cheaper to have children in bulk-- kind of treating one's uterus like a human Costco--because in the cost/ benefit analysis having a whole herd of potential little laborers has a bigger payoff for nearly the same investment. I have one perpetually pregnant friend I suspect is acting on this theory with her husband, but her dead eyes and frequent use of the phrases "living abyss" and "sweet relief of death" lead me to believe the approach may not be worth it. As Chandler once said to Monica on Friends, "We'll just pick our favorite child, and that one can go to college." Anyway, unless you are a Gates or a Zuckerberg or hold the royalty rights to Squinkies, autism takes the option of parental provision into the realm of impossibility. For my kids, it's going to take a village, the Department of Health and Human Services, affordable healthcare and anti-poverty legislation, private grants and non-profit resource agencies to get my kids what they need, no matter how much blood, sweat and tears I shed. And luckily I have a loving God who has promised (not said "we'll see" or "if you only do x, then," but promised!) that he will provide all his children's needs--material and otherwise. He does this through our obedience to his command that we all care for each other--that we love one another was we love ourselves. That's not just Christianity, that's the origin of all social justice, and anyone who tells you the two aren't compatible is making billions of 7 million dollar mistakes. the Department of Everything Else 01/30/2012
 Hub and boys visit the Shantytown Capitol shortly before the mayhem of "Occupy the Shanty" ensues Yes, there is a place in the world where the folks are just as weird--nay, I say weirder--than me and my clan. A place where people (and quite a few dogs) play all day on a frozen lake, ride the ice on bikes that look like wolves or muskies or Babe the Blue Ox, take on monster names or Norwegian identitites, dance for no reason in the mirror-balled interior of a darkened ice shanty, overthrow their mayor on a whim, and cut through the silly tape of beaurocracy by applying for permits of nonsense, pawing through lost and found. There are blanket forts and hot dogs and bonfires and cocoa and singing and slippery outdoor runway fashion shows. A troll lives under the bridge that goes...to nowhere. We spent the day at Shantytown, a social experiment called the Art Shanty Project on Medicine Lake, and man did we fit right in. I would say the ruling hegemony in Shantytown were young hipster artists in long home-sewed wool shirts and combat boots (and their bearded boyfriends in hand-knit scarves), followed closely by individuals with large black dogs and cool families with adorable children. But like all fun towns, there was also a diversity tot he culture of Shantytown which enriched it. I met at least one freezing and horrified person from California there, a dog hater, and some elder folks who more than once were heard muttering, "What in the hell...?" It was a real slice of life, which the boys adored.  here, Toe instructs the "teachers" of the One Room School House shanty in the how-tos of manual typewriting  there goes wolfbike, right past the Sit-and-Spin shanty  Toe sits...and spins  Roo tries to entice us into his warm world of blanket forts at the Fort Shanty  igloo Roo  Toe"s citizenship card for Shantytown. On the application he has listed his former occupation as "annoyance" and his proposed new occupation in Shantytown as "dog-petter," and thus was granted residence.  after stepping in an open water fishing hole, Roo was issued an ex post facto permit for "falling through the ice" by the Dept. of Everything Else  ShantyCouncilWoman accompanies a reluctant toe into the "Monsters Under the Bed" shanty  duh, of course  Toe is assigned a new identity  Roo fearlessly investigates the shanty of the Troll Inder the Bridge in true CSI style  Shantytown pink ear muff flashmob at sunset  Roo chooses a bike to go with his hat  stone-cold tired books that fly: a true yarn 01/23/2012
 When I was 18 I threw a spectacularly bad book* from the window of a speeding train, just because I couldn't stand its existence. The train was the Empire Builder, and I was on the final leg of a transcontinental ride from St. Paul to visit my sister in Los Angeles all alone. The trip took 3.5 days. Despite having my own berth and access to facilities, crossing the desert at night at ninety miles-per-hour was infuriatingly hot, noisy and confining. I'd spent 70 hours in an ever-wobbling, CLAK CLAK CLAKITY tubular waiting room. It smelled of feet and teryiaki beef in there, and I may have been a little cranky. I definitely had a cluster headache. The fact that my last piece of reading material (and the only thing left in my luggage that could transport or at least entertain me) was so offensively awful, both in style and content, was the straw that broke the camel's back. Windows opened on Amtrak in 1988. It was a paperback, and therefore biodegradable. What a satisfying fling! Since then I have been know to fling other books. Seriously, there are people in my life who call me "the Pitcher." When they give me books as gifts they dramatically pat the bindings and say things like, "Good luck, little buddy. I hope you make it." Har har. Some people think they are so funny. Once I tossed a paperback out the attic window of a relative's house. I was helping her pack and came across a famously demonic novel** that had, in the movie version, scarred my childhood. Since this person is and was a devoted Christian, I freed her of that Satan's foothold right then and there. I'm telling you: the Pitcher. Last night my neighbor, Sweet Trev, saw me standing out in the yard, ankle deep in snow, photographing something in the bushes (and no, if you're wondering, I was not wearing pants). He was exercising he and his wife Boua's new puppy. Trev (waving): How's it going? Me: Excellent! Trev: (totally unflustered that I have a flashlight, an iPad and am pantless in the dark): Taking pictures, huh? Me: (pawing at a bush) Yup! I flung this insultingly crappy autism book*** out the window and now I have to prove to a friend that I actually did it. You know, she's one of those, "No picture, it didn't happen." Trev: So she thinks you lie, huh? Me: Maybe. Trev: Doesn't she know people call you "the Pitcher?" Me: (placing the flashlight over the discarded bookturd to enhance the photo****): She will now! Trev: Awesome! I think all the book-flinging I have done my whole adulthood has led up to this most recent one. Though the book didn't make it far (I was home, most of the windows were frozen shut, and I had two wild autistic boys playing "How to Train a Dragon" and trying to parasail off the furniture in the living room), it was the most deserving of a pitch into the dirt than any I have ever tossed. This book dishonored autistic motherhood. This book gave false hope. This book disrespected the autism family experience. And there is no room for that in the presence of the Pitcher. * ** *** ****Book titles and photographic evidence will be provided upon email request: bluecollardaughter@gmail.com Our Autism Odyssey: a party for apps 01/22/2012
 Toe hoards apps. If the Discovery Health Channel ever does a special on the condition of app-hoarding, Tivo it (we have no cable or Tivo here) and let me know. Also, could I watch it at your house while you entertain my children and prepare me a homecooked meal and offer a cold beer? Thanks, that's really the whole package that I'm looking for. Actually I'm a bit of an app-hoarder myself lately, there being so much educational fun and awesomeness out there for autistic kids. Toe himself keeps and app scrapbook, a folder with clippings or printouts about apps he wants for the iPad (the ones we approve of, that is...I really have to draw the line at anything containing zombies, murderous blazing fireball catapults, books or stories about vampires, warlocks or the undead in general, blah blah blah). His yearly grant allows for the purchase of some apps, and Toe "earns" others as rewards for completing other typical kid-hated tasks such as not riding the beagle like a pony for an entire month. Today we are having an app download party (if someone can throw themselves a shindig as silly as a "blog launch party," we can do this), funded by app-specific birthday funds Toe received from friends and family, and guided by the recommendations of other parents, the autism technology community, the wisdom of Dr. Little Bird (who went to a whole conference on what apps are good for ASD kids), and a Christmas gift of our own: the book Apps For Autism. Refreshments (Apples, of course) will be served. Some apps on our invite list: National Geographic Weird But True! Bobo Explore Light Big Little Brother The Fantastic Flying Books of Mr. Morris Lessmore Moozart Presidents vs. Aliens Stack the States The Angry Octopus MeeGenius story classic (desired but not yet available are the Ms. Alissa, Ms. Claire, Ms. Vi, Ms. Colleen, Ms. Tanya apps--get on that, Apple!). trashy Saturday 01/21/2012
 sleeper story of the week: Roo loves machetes and other "knifey things" Remember in episode 13 of West Wing when Friday was known as "take out the trash day?" That's when broadcasters and journalists ram all the stories that are otherwise too boring (or sometimes too unflattering to the Administration) into the news, because on Fridays and Saturdays everyone is pigging out at the pizza parlor, zoning on Netflix movies in their housepants, or self-medicating to decompress from their hellish week (and therefore not really watching). No? Well if you are too young or too Republican (or too normal) to have not been so in love with West Wing and memorized practically everything everyone in it ever said and did, you maybe won't enjoy my blog. Anyhoo, I've got a few stinky Hefty bags built up from this week, so let's just dig in. Dumpster diving can be fun! 1. The Big Drip I am currently on #7 of 8 weeks of IV infusions to treat the bloodlessness of my blood: side effects include mysterious rashes (each morning I have to ask myself, "Which shirt goes best with these hives?"); chronic skull-splitting headache, rusty joint syndrome, pants intolerance, dragass, merciless bloat, and sobbing at the sight of rootbeer.  on my pole: intravenous benadryl, vodka and...rootbeer? 2. Blind Old Skeeter Update Remember how we had the blues? Well, come February 6, we're going to be singing a new tune called "Old One-Eyed Skeeter." Our aging Rat Terrier is not responding to the opthamological treatments for his bulging eyclopse, and so must have his advanced glaucoma treated with eye removal. He is otherwise completely healthy and happy, so though he will look like a tiny pirate afterwards, he should move on fine in life juist like the rest of us mutants. 3. Roo Boo Hoo Roo has been out of sorts lately, not himself, unable to sleep, mumbling nonsense, agitated, restless. After reading a book about the natural and manmade wonders of the world he wouldn't pipe down about taking a "trip to the Dodge Mahal," and when we said it wasn't in the budget to see India this year (or possibly Los Angeles??), he tantrumed on and off in his room for the next 13.5 hours. He is also not sweating, so has to be evaluated for nerve dysfunction or even the absence of sweat glands. Obiously, more on Roo later...his medical visit calendar is more full than mine. 4. The Doctor Challenge Toe and Roo were participants in the training of new autism specialists at the University of Minnesota, a program headed up by our favorite and fabulous Dr. Little Bird (not her real name). The boys were given the ADOS test, bit by bit, by a whole roomful of interns, whose pants were charmed completely off by both of them. Toe's responses ran the gamut from "Once my Mommy said the F word" to "Pepperoni and green olive is the only pizza I truly adore" and anything you can imagine in between. He also was very bossy, dictating exactly how he wanted the doctors in what he called "the doctor challenge" to proceed, and showed clear favoritism toward female candidates who either wore hot pink or were brunette (that little cad). Reuben practically lost his mind with glee when asked to participate in a pretend birthday party, and then proceeded to turn the whole event into one big long scene from the Mad Hatter. And for that they rewarded us in Target generous Target gift cards (the true booty of the autism stage mom). There's more, but you get the general stink of our week!  Toe goes, "Roo, have you lost your dang mind?!" wheel of cheese 01/19/2012
 Every January I give up cheese. It's not a resolution, it's not because I was bullied into doing so by a horrifying cheese-hater's shame campaign, it's just after the holidays signifies to me the need to put an end to "cheese season" (otherwise known as September-December, when my willpower wears thin and again I find myself in human bondage to the wiles of cheese). Cheese is my one of my best friends and truest loves, part of the colorful fabric of our national history, my gateway drug, life-altering, salty, gluten-free, gloriously diverse, a local delicacy, almost holy...mmmm, melty. What was I saying? Also, this year, Roo (fellow cheese champion) will be giving up cheese during a 4-month trial elimination period of food allergens and intolerances, to see if that resolves his chronic eosinophilic espophagitis (also known in this blog as "SPED" or "Spontaneous Puking Events Disorder"). Toe, who finds cheese repulsive(unless you consider this cheese), has long been allergic to cow's milk and is therefore dairy-free. So, short of becoming one of those parents who has to go out with friends or hide in her room to score some cheese, cheese is out. Farewell, you beautiful, edible bacterial process. Things Roo and I plan to do when we have the "cheese blues" (a list of jointly-created compromises): --eat another of our favorite treats, namely frozen strawberries dipped in pure cane sugar (just because Paula Dean is diabetic doesn't mean we have to give up the pipe) --"maybe jus' lick it" (~Roo) --say a prayer --talk trash about Wisconsin --think of cows pooping --play with PlayDoh to busy our hands; make faux cheese or maybe models of superheroes who have the power to endure cheeselessness --cry ourselves to sleep Wish us luck! | QUOTE OF THE WEEK
God’s foolishness is wiser than human wisdom, and God’s weakness is stronger than human strength.
~I Corinthians 1:25  AuthorWriter, blogger, advocate, religious lefty, Christian crackpot, mother of lads, great wife shark   CLICK HERE TO RIDE THE WEBBYCOASTER! ArchivesFebruary 2012  Visit the Webrary |
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