All My Infirmities

Audrey's had a lot to contend with during her 6 short years on Earth.  As if autism wasn't enough, she's been a magnet for all manner of other serious illnesses and calamities.

When she was just 10 months old, she decided to come down with the rotavirus during a flight from Chicago to San Jose.  If you are eating as you read this, you might want to come back when you're done.  You would never think that a little 10-month-old body could hold such volumes of puke.  It just kept coming and coming...all over me, all over person next to us, and all down the aisle as I tried to make a break for the toilet.  I had a change of clothes for her, but not for me.  And I definitely didn't pack a clean pair of Dockers for the middle-aged man sitting next to us.  I had gotten the worst of it though.  Audrey was happy as a clam once she had purged herself of every drop of bodily fluid inside her.  Meanwhile, I had to sit through the rest of the flight in overalls that were soaked to my skin in puke and non-potable airplane toilet water.  The guy sitting next to us must have hit the eject button and parachuted into the Rockies because he was nowhere to be found when we returned to our seats.

When she was 3  1/2 years old, Audrey was mauled by a dog.  On her face.  I have pictures, but I won't be posting them.  It was hideous and awful and horrifying.  She had something like 20 stitches in her face, and her head swelled up like a pumpkin.  Which was fitting because it happened just before Halloween.  This was by far the worst of our emergencies, but it was not our last.

Two Halloweens later, just this past fall, we made another festive trip to the ER.  This time she fell off of monkey bars and broke her arm.  It would be the second time in three years that she would get some kind of Halloween garb cut off of her by an EMT.  When she was bit by the dog, it was an orange-and-black Old Navy t-shirt.  This time around she was dressed in her full costume.  As a cupcake.  Which gives me an excuse to post this picture:

This costume represents the apex of Halloween costumery for us.  It will never get any better than this.  I could tell you that I found a picture in a Pottery Barn Kids catalog (theirs was like $70) and sent it off to my crafty beaver of a sister with orders for her to replicate it...but she doesn't read my blog, so I totally made it myself.  If you don't think this is the cutest thing you ever saw, then you seriously need to kiss my ass.

The scene just a mere minutes after that picture was taken was slightly less cute.  A poor, distressed cupcake getting her little pink sweatshirt/frosting cut off...strawberry garnish askew, pink and brown jimmys flying, cupcake liner torn.  You can see the remnants in this picture.  I think the morphine had kicked in at this point because she's looking like a pretty smashed cupcake.

Luckily, she didn't break her mouse arm so she could still obsessively search YouTube for naughty versions of children's songs and Chinese-language Baby Mozart clips.

Which brings us to the present.  This week, Audrey fell off of a swing at school.  No, not the playground kind.  That would be too normal.  She somehow fell out of one of those lycra hammock swings that are commonly found in sensory/motor rooms for occupational therapy.  I guess she was being swung by one of the aids and somehow flew out of it with extreme volacity, missing the padded mat and landing forehead-first on the thinly carpeted floor.

I took her to the pediatrician to have her checked out for a concussion, and made sure to take along the school's accident report lest they think that I was responsible for her injuries.  Because it really really looks like she's gone a couple of rounds with somebody. 

Through it all, Audrey is almost always in her usual good spirits, unlike her sobbing train wreck of a mother.  Witness her text convo with Lauren yesterday:

Lauren:  How's your booboo

Audrey:  It is very good.

What is a meme?

I've been tagged for a meme, and I'm not sure what that is.  I should make that my first question.  I normally ignore these things, but I've been tagged by the fabulous Dani G in her bomb-diggety blog I'm Just That Way and That's Just Me.  Dani and I have agreed that the root of our problems may just be that we always hit the delete button when we receive stuff like this, even though it often says right there in black and white that your life will go to hell in a hand basket if you do.

So let's see if this changes my luck.  I'm going to answer her 8 questions, and then come up with 8 more to tag other people with...

1) Last piece of music you bought/downloaded (legally or illegally)?
"Plundered My Soul" by the Rolling Stones from the Exile on Main Street reissue.  I'm old.

2) Never go to bed angry? Or too tired for that and we'll deal with it later?
Always go to bed angry.  It's really not that bad.

3) Have you turned into your mother yet? Truth.
Yes.  We are both balls of stress and laugh at really inappropriate things.

4) If you could go back in time to high school, would you? I would.
No way.  But I would like to have my senior year body back.

5) What did you eat for breakfast this morning? I had a bowl of cereal. Two parts Fiber One, one part Cap'n Crunch Crunchberries. So what?
Oatmeal and banana. 

6) Do you secretly like the songs in the Backyardigans? Yes you do.
Great Caesar's ghost!  I do.  Too bad Audrey doesn't.

7) Do you ever lie and say you think your friends kids are cute? What? No, no me neither. Every child is a gift (blah blah blah).
To their face or behind their backs?  I make it a policy never to complement people on their neurotypical kids.  They already have everything going their way.  Just kidding.  Sorta.

8) Desert island: husband, best friend, or Edward Cullen? Yeah, me too.

You mean Bill Cullen, the game show host?  I'd totally hit that.  Did I say yet that I'm old?

And here are my questions:

1) Joran van der Sloot:  cold-blooded serial-killer or misunderstood guy who just happens to be in the wrong place at the wrong time?  A lot.

2) What was your first concert?  Elton John's 1975 Caribou Tour?  Me too!

3) How many hours a day is the TV on in your house? Stop lying.

4) Do you work out regularly?  Walking to your mailbox in Shape-Ups doesn't count.

5) Word association.  I say "Nancy Grace", you say...

6) Letterman or Leno?

7) Where were you living in 1995?  Amsterdam y'all!  Just wanted to show off.

Optional #8 (don't answer if you don't want to have the word "porn" on your blog)

What is your porn name doing the childhood pet/street you grew up on trick? Mine is Scruffy 124th Street. Sexy time!

OK, I'm going to tag people, but they totally do not have to do it.  Especially since their blogs are a lot nicer than mine and I'm sure that they don't want to be dragged down to my level.  I promise that there will not be a pox on your house if you don't:

Cheryl D.
Funky Mama Bird
Dawn
Jenny
Grandmother Crone
Reener

I'd like to see my non-blogging friends responses to these too.  If you pass this along to 25 other people, something good will not happen to you before the end of the day today.  I promise.

Sh*t My Daughter Says

Audrey often throws filler words in her sentences that don't make sense.  She knows that there's supposed to be something there, but she doesn't know quite how to flesh it out.  She has started tacking on a lot of words at the ends of her sentences.  So she'll say something like, "You're going swimming then today instead on Saturday.  Yet."

Or, "Last time you've been so tired today though right here now.  On Friday."

I don't know if this is a technique to make it appear that she's saying really long sentences, or if she is literally unable to stop until I jump in and cut her off.

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Yesterday she was walking around singing "Old McDonald had a gun, E-I-E-I-O"
"Where did you hear that?"
"YouTube."

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I was making a big racket during one of Audrey's therapy sessions with Lauren. I was trying out my new workout jump rope (like I'm ever going to use it again) on the hardwood floor upstairs, which probably sounded like machine gun fire to them in the basement.

Lauren: "What was that?"
Audrey: "That's Mommy getting mad at Daddy."

----------------

Audrey:  "You've been so pissed to you."
Translation:  "I've been so pissed at you."  I wouldn't mind her saying the word "pissed" if she'd get the pronouns and prepositions right.

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Guns, fighting, anger, aggression, and all the echolalic kiddy profanity you can stand...feel free to stop by our happy, happy home any time!

Hot TOT-D (Text Of The Day)

Audrey:  Grant
Lauren:  Do you like Grant?
Audrey:  Yes I like Grant.

We have reciprocation!

Last Day of Camp: Grant(ing) Your Wish

So here is a photo of the much-discussed Grant.  In my opinion, he does not live up to the hype.  I think Lauren was focused on his physique.  Is it possible for a man to be a buttaface?  Lauren insists she just didn't get a good enough picture of him, and that he looked much better on Friday with a backwards baseball cap and the beginnings of a goatee.  Because a backwards baseball cap and a goatee is exactly what he needs to win over my heart.

There was a winner after all in the Amazing (-ly Confusing) Race...and Audrey's team won!!!  I guess the woman in charge loved their bat-shit crazy ideas originality.  I still maintain that the kids were clueless about the point of the game, but they were no doubt happy to collect their winnings:  Hubba Bubba Sour Green Apple Bubble Tape (6 feet of fun!).  Audrey came home and promptly shoved about 4 feet of it in her mouth and then swallowed, because she still doesn't get the whole gum thing.

The big event of the day was a visit from Ronald McDonald, who talked to the kids about staying active this summer and stopping by for a McCafe Mocha Frappe when they needed a pick-me-up.  Then they played a round of "Ronald Says".  Lauren said that Audrey was completely enthralled and followed along perfectly.  Audrey's ability to follow instructions seems to be inversely related to how humanoid the instructor is.  And so we have her under the spell of Mr. Smiles of ballet class fame
(you can read about Mr. Smiles here, and see a picture of him
here) and Ronald McDonald.  It's enough to make me want to invest in a gorilla costume to put on when she is having a particularly non-compliant day.

So there you have it, summer camp 2010.  All one week of it.  Audrey attends a year-round school, so it's back to school on Monday.  She has a two-week break in August, and the first week of that break is the last week of this camp.  So I could actually sign her up for another week of the camp, which I must admit sort of grew on me in a weird way.  I asked Lauren if she thought it was worth it, fully expecting her to give me a horrified "no!", but the pull of Grant is too strong I guess.  I haven't decided yet.  I have to weight out the benefit to Audrey with my need for blog material.  What do you think? 

Day 4: The Amazing (-ly Confusing) Race

Yesterday's camp schedule said the kids would be going on an Amazing Race through our quaint little downtown.  I didn't know what that meant exactly, but I know that races and Audrey do not go together.  There was even  this disturbing little visual on the calendar...

...implying some kind of relay race.  I figured it would be another day of Audrey doing ballet moves by the side of the road oblivious to someone trying to shove a baton at her.

Turned out that it was more of a scavenger hunt.  The teams were supposed to go around town photographing themselves in front of things beginning with each letter of the alphabet.  So that could have been something up Audrey's alley.  She's all about letters and words and taking pictures of inanimate objects (see a display of her photographic skills here).

Except that Grant and Andrew decided to get all abstract and creative, to the point where even the typical kids had absolutely no clue what was going on.  So instead of taking a picture of them in front of the ice cream parlor for the letter I, they made them go behind some barred window in the parking garage and pretend to be....incarcerated.  I really hope for the kids' sakes that none of them knows what this word means, and if they do it's from Dad watching too much Dog the Bounty Hunter rather than Dad having personal knowledge of it.

Then they posed in front of a fitness center with all of them flexing their muscles for the camera.  Now what letter would you guess this was for?  If you said F for fitness or M for Muscles, you are clearly not inside the mind of the meathead frat boys running this camp.  No, this was for the letter J.  For Juice.   

By the end, they had disrupted a church (A for Amen, and C for Choir), posed in front of a dumpster (G for Garbage), as well as poop (F for Flypoop because they already had their P word).  Then they all went back to base camp where no one reviewed their findings and no one was pronounced a winner.  The Amazing Race is neither amazing nor a race.  Discuss.

Coming tomorrow....the last day of camp including photos of the fabulous Grant.

Day 3: Mr. Jason the Jugular

Lauren's note on Day 3 of summer camp:

It was Audrey's lucky day.  A girl comes up to Audrey and tells her that she likes to pirouette or soubresaut, and I don't know if this is the right word because I didn't Google it (meaning that she totally Googled it because that is exactly how it is spelled) in order to dodge the balls. So now there are two ballerinas strutting their stuff in the middle of an intense dodgeball game. Audrey was happy to have a friend, embracing her with a hug, and saying something along the lines of "now your friends are taking turns to do ballet."  Macho man Grant protected them from getting smashed in the face with a ball and off they danced.

Then a juggler, or as Audrey called him, a jugular (that was my handiwork, along with Audrey calling Lauren "Lorraine" for the entire day) came to perform.  Audrey sat on the floor with all the other campers like a little angel. She followed right along, raising her hand to show that yes she does watch America's Got Talent and American Idol too. Which I'm pretty sure she's never heard of.  (No, we don't watch those low-rent Gong Shows in our household...but she may be giving Grant a rose at the end of the week in the Most Dramatic Rose Ceremony Ever)


After the show Mr. Jason let the kids try a few tricks. One involved a peacock feather and one involved two scarves. Audrey loved the feather...I didn't tell Mr. Jason that she broke it (Smart move, I don't need to get on the bad side of someone making a living juggling at summer camps).  I was happy to let her run around with the scarves, but Grant asked her to try the tricks. So Audrey tried to throw and catch the scarves per Grant's suggestion.  She seemed to enjoy the juggling show so maybe you did get your money's worth after all Lynn (Not unless he was handing out $50's).

Day 2: Mini-Golfers Gone Wild

No note from Lauren on yesterday's camp.  She was too exhausted from practically having to take it over from the lame counselors who are supposed to be running the show.  Grant and Andrew have gone from studs to slugs in just 24 hours.  It was mini-golf day and they apparently were too busy competing against each other to pay any attention to what the campers were up to.  They were horsing around and putting on some phony accents (which according to Lauren's imitation could have been Scottish, Indian, or Australian), that were so obnoxious the kids were telling them that they were being annoying.  Unless the camp t-shirts cost them $99, I'm not sure that I'm going to get my money's worth out of this camp.

Day 1 of Camp: Spirit Day

Audrey started a typical kids summer camp yesterday.  She's only going for week, so don't worry...I won't be counting up to day 62 a la the oil spill. 

She had to wear a team t-shirt and since I've been too cheap to invest in a Blackhawks Stanley Cup Championship shirt for her, she had to settle for a Wal-Mart clearance rack White Sox t-shirt (hey, they've been at .500 for all of one day!).

She's still not 100% healthy, but was surprisingly game to separate from me and embark on a new experience.  Maybe she's as sick of me as I am of her.  As always, she is accompanied by Lauren, which greatly eases her (and my) stress. 

Lauren said that she had a great time, and has already developed a crush on one of the hottie counselors, Grant.  The camp is supposed to be mostly outdoors, but it was pouring rain here yesterday so they were inside.  Pro:  She didn't have to endure the scorching heat which makes her totally wilt.  Con:  Games.  Lots and lots of games.  Involving balls.  Requiring motor skills.

I've asked Lauren to provide me with a daily note, which I have copied in below and added my comments to in pink:

40-50 school-aged kids in one crowded gym. Audrey barely has a voice, and I along with everyone else can hardly hear her.

First game:  four square.  With minimal prompting Audrey followed along running to different corners. By about the third game, Audrey and I were out and sitting with all the other losers (Get used to it sister...you have your mother's athletic ability). All of a sudden without saying anything she bolts off to join the game. She joined Grant, who was so fun that he had a whole group of kids running around with him, and Audrey followed right along with him and the rest of his fan club (three snaps in the air girl).

Next game:  knockout, requiring you make a basket.  Audrey had zero interest, knowledge, or skill to do so, but she stood through the whole long line to try. Again being as competitive as I am, I was trying to get her excited about knocking out the boy in front of her. So Audrey knocked on his back. Then after more explaining of the game and logic of knockout, it was her turn to shoot which was a struggle to say the least. I handed her the ball and again encouraged her to knock out the boy in front of her. This time she knocks on him with the ball... Guess she didn't understand this game. (In her defense, I'm not sure that I understand this game)

Then came dodgeball which I'm pretty sure we played for an hour. She ran around the court fitting in fine. Not totally into the game. She kicked a few balls and attempted to throw a few. She didn't pose too much of a threat to the other team. She only got pelted by a ball two or three times. (Lauren later informed me that Audrey would get distracted during dodgeball and start doing her ballet positions.  Hey, she takes ballet classes in the same building...seems reasonable to me.  I would really like to have the video of her getting clocked with a medicine ball while she is doing one of her wobbly arabesques.)

She never got bored or tired.  A few times she drifted away from me to Grant's team (Oh no you did not).  Absolutely awesome behavior. Just wish she has her voice for the rest of the week to make it all that more productive.

So far, so (kinda) good....we'll see what Day 2 brings.

Destruction of the Grotto

That was Audrey's latest text message sent to another one of her therapists.

"Destruction of the grotto"

What in the world? I can usually navigate the labyrinth of Audrey's mind and trace back her left-field references to their origins. But this one I could not figure out.

Grotto, grotto, grotto. I thought about it so hard that I had that thing happen where it stops sounding like a word and just becomes a sound. What a strange word. You could probably count on one hand the times in your life when you would ever utter it:

1) You are attending a party at Hef's Playboy Mansion.

Use in a sentence: "Hey Pauly Shore, wanna check out the grotto?"

Probability of saying this sentence: -100%

2) You are visiting the isle of Capri off of the Amalfi Coast of Italy.

Use in a sentence: "I feel like being gouged today. Let's spend $100 on a 10 second boat ride through the Blue Grotto."

Probability of saying sentence: 50%; unless you are wearing the island's namesake pants and big white walking shoes, then 100%

3) You have a taste for steak and live in the western suburbs of Chicago.

Use in a sentence: "What about The Grotto? Of course, it's right by Lynn's house and God forbid we run into her. She is insufferable."

Probability of saying this sentence: You tell me, "friend".

Clearly, I am over-thinking this when the answer was right there in my hands. Audrey was texting from my iPhone, on which I've loaded a bunch of her music. Anybody know the answer to this riddle before I divulge? Wait for it...

"Destruction of the Grotto" is the name of a song from The Little Mermaid soundtrack. It is played in the movie when her mer-man father gets all mad at her for loving a landlubber. He proceeds to destroy her grotto. And after all of my perseveration over the word "grotto", the song is an instrumental.

Pass the Pinot #4: Tantrums

Who isn't mortified by tantrums? I mean the public ones. I'm not nearly as bothered by the ones that occur in the privacy of my own home, where if I completely lose my shit and have go into the garage and start beating myself over the head with a tire iron at least no one is there to witness it. Not that I've ever done that.

But to get back to my original question, there does seem to be a sub-species of mothers who are completely unfazed by their kicking, screaming, writhing, ape-shit progeny. You've seen them. They look like Zen masters exuding an aura of complete calm while their toddler tears at them and sends clumps of their hair and the odd shard of jewelry flying through the air. How do they do it? Or more specifically, what are they on?

It's just not me. It may be because of Audrey's autism that I am overly sensitive and cringe at the thought of her sticking out any more than she already does because of her behaviors. But truthfully I think I would react the same way if I had a typical child. It's just the way that I was raised. My mother wouldn't even let me and my three siblings dine in at McDonald's for fear that we would offend the sensibilities of their notoriously refined patrons. And this was before the days of the drive-through. She had to go in and order food to go while we waited in the car. Is it any wonder that I want to curl up and die when Audrey acts out?

With typical children, you hope that they have grown out of tantrums by the time they hit 50 pounds. When they are toddlers, it's fairly easy to chuck them into the stroller, strap them in, and leg it to the car. When you're dealing with an 8 year old autistic child, it's a lot harder. What are you going to do when they are too big to be physically dragged out of the mall? Call security? Carry a tranquilizer gun? You've got no choice but to ride it out.

Autistic children tantrum over many of the same things as typical children, but also over a whole battery of other situations mostly having to do with any change to their routine. So they may melt down if you go to a different Target than usual, or rearrange the furniture, or color your hair. Lost on them is the fact that you've gone to a different Target because you don't feel you can show your face at your usual one after the last scene that they made, you've rearranged the furniture to cover the spot on the carpet where they've repeatedly smeared their poop, and you've colored your hair because you've gone completely white from parenting an autistic child.

Sensory overload can also cause tantrums in autistic kids. When Audrey was a toddler, she would completely lose it over the sound of another child crying. And when you have a toddler, there is pretty much always another crying toddler wherever you go. Now at 6 years old, she has done a 180. If another child is crying, she goes right up in their face and start laughing her head off. This is considered by her therapists to be just as inappropriate of a reaction. But I call it progress because in my book it's much more age-appropriate for a 6 year old to act like an insensitive jerk than a tantruming brat. Here's hoping that those aren't my only two choices going forward.

I Am Stuck on Band-Aids

Audrey is obsessed with band-aids, and insists on having one for any little nick on her skin. And I don't even have the kid-friendly ones with the superheroes/cartoon characters/latest Disney tie-in on them. It takes an intervention to get them off of her, and by that time they are a dirty, congealed mess of flesh-colored goo.

I'm not sure what the one in the picture is for. She either thinks that she has a sore in her mouth or it's to heal the "broken voice". Probably the former because I have a feeling that she would start swallowing them if she was aiming for the laryngitis. She is still feelin' croupy...no voice, no appetite, no energy, no bath. Hey toots, the Sleeping Beauty nightgown was cute the first 3 days...

Feeling Croupy

Audrey is sick. What a way to kick off the summer. When Audrey is sick, she is equally miserable regardless of whether she has the smallest cold or the rotavirus or the ebola virus for that matter. She keeps me up all night yelling out things like "I need a tissue! My nose is locked!" The night is a continuous cycle of me staggering around meeting all of her requests, her wandering around complaining and eventually coming into bed with me and hacking and sneezing all over me, followed by me escorting her back to her bedroom. I never get a wink of sleep, and 24-48 hours I inevitably come down with whatever she had.

The days aren't much better than the nights. No matter how little she has slept at night, she refuses to nap. She'll try to do some of her usual activities, but poops out after a few minutes. She'll watch TV for a half-hour but then get bored. This illness is a weird one; she has a fairly high fever and laryngitis ("I'm sick! My voice is broken!"). If this were happening at the height of the swine flu scare, I would have had her in the ER by now. But it's not, so I won't. Although it would kill a few hours of this interminable day...

UPDATE: Her respiratory symptoms were worsening so I took her to the doctor. He said that it is the same virus as the croup, which manifests itself in bigger kids as laryngitis. I didn't even bother asking how it manifested itself in the perimenopausal of our household. Audrey is feeling better already. I will see you around Labor Day.

Dancing Like There's No One Watching (But Someone Always Is)

Audrey gets down with her bad self.



Busting a move in Target...and what are you looking at?

The Evolution of Autexting

Way back in April, I blogged about Audrey's love of texting from my iPhone. At that time, she was pretty much just listing people's names and hadn't figured out the space bar. But a little more than two months later, she's come quite a long way.

This series of texts tells the story of her going to a piano lesson. Her teacher is Irine and there is a retention pond outside of the church where she takes lessons that sometimes has ducks or geese in it. The "waterfall" is a storm water drain that runs into the pond after a lot of rain. Also, one of my mother's neighbors has a small waterfall in his front yard, and that is the "noni" reference.

I'm impressed with her use of apostrophes, and the texting shorthand "u". And here in Chicago we really do say the word "suppose" like it has one syllable, so I'm loving her spelling of it. Reading it all the way through like this, it kind of sounds like beatnik poetry. I'm not sure what purpose it serves to her. She still doesn't understand the back and forth. I didn't even bother inserting Lauren's responses to her because they go largely ignored. She seems to be just yakking about the highlights of her day and sending it out into the ether. Like mother, like daughter I guess...

There was a waterfall and there was lots of geese and there was lots of ducks outside not in there was not lots of ducks in the pond because it's raining

outside then we have to go home

There was just a little water fall

There was not lots of geese and there was not lots of ducks

We are not spost to go outside

Because it raining outside we have to go inside tho

There was just small water fall

There was not lots of geese or ducks

Inside not outside

But you have to go in tho

And play a song on the piano

But you have to go in and play u song on the piano tho

We are not spossed to go out

There was just a small water fall in next to the rocks at noni

Irine Poulakis I see a lake in here

Bandit the Robot

Computer scientists at the University of Southern California are in the process of developing a robot for therapeutic use with children who have autism. The robot is named "Bandit", and you can read more about him/her/it at:
www.popsci.com/science/article/2010-05/humanoid-robots-are-new-therapists

I don't know how to feel about this. The theory is that robots would draw autistic kids into social interactions because they "respond more naturally to machines than they do to people". Well, yes, but that is sort of the problem, and the reason that we are bankrupting ourselves paying for therapy with humans. Unless the plot of every science-fiction-action movie comes true and the planet is taken over by a superior race of androids, Audrey is going to have to learn to interact with and relate to human beings.

One of the stated goals of the project is for these robots to eventually sell for the price of a laptop, and while that would admittedly solve our financial problems, I'm not sure that I would be comfortable with a team of robots replacing my ABA therapists. Unless they could also be programmed to scrub my moldy shower grout and give me a pedi, I'm not sure it's worth it. The upkeep alone would probably quickly offset any benefits. Just who are you going to call when they go haywire and start dry humping the dishwasher? The Geek Squad?

But I do have to admit that as robots go, Bandit is pretty cute...

Bandit shows his school spirit and enjoys a refreshing beverage.















Uh oh. Bandit MAD.
















Bandit feel better now. Bandit want hug.










Audrey 20 years from now, laughing a little too hard at her date's joke.

Hat & Sunglasses Day

It's the last week of school, so every day has a theme. So far Audrey has worn pajamas, her favorite color, her favorite sports team garb, and today was hat and sunglasses day.

I've tried many times, but have never gotten Audrey to wear a pair of sunglasses. I've always felt that she was kind of averse to bright sunlight and that she might actually like sunglasses. But whatever benefit she might get in terms of reduced visual input, is apparently negated by the annoyance of having something stuck on her ears, nose, and face.

Anyway, I figured that Hat & Sunglasses Day would have to be reduced to Hat Day, and even that would probably be more like Hat Hour Tops. But there must be something about having an official "day" on the calendar that made her feel that noncompliance was not an option. She put on the sunglasses like nothing. And her daily note said that she kept both the hat and sunglasses on for the entire day.

So I'm declaring tomorrow to be the official No Whining Day or maybe Make Your Father Happy and Eat a Pile of Collard Greens Day. No screw that...how about Let Your Mother Sleep In Day.

My Mother Doesn't Read My Blog

That's it. That's all I want to say. I'm not offended, or even surprised.

Maybe that isn't all I want to say. Since she doesn't read my blog, I can safely talk some smack about her, now can't I? As smart as my mother is, she's just not a reader. I think the last book that she finished was Valley of the Dolls in 1966. Come to think of it, I think she just saw the movie. I think we watched it together when I was 4. We split a pack of cigs and a pitcher of Pussycats, and cried our eyes out when Patty Duke broke down ("My dolls! My beautiful dolls!"). But I digress.

The only thing my mother reads with any regularity anymore is her morning Chicago Tribune, with the following priority:

- The obituaries, because there is almost always someone listed that she knows, or at least knows of.

- The grocery store sale papers, so that she can plan out her week which includes trips to no fewer than five grocery stores so that she can the best prices.

- The crime blotter, so that she can jump to the conclusion that, whatever the offense, the husband/boyfriend/baby daddy did it. She's right about 90% of the time.

- The "Celebrations" section, which includes notices of engagements, weddings, graduations, etc. I must admit that I love this section too, especially the anniversary notices which are most commonly for 50th anniversaries and usually show an original wedding photo side-by-side with a current one. We both scour them every Thursday morning and then check in with each other and cast our vote for The Couple With The Biggest Increase in Head Circumference.

- The letters to the editor, in the hopes that her favorite geriatric contributors will have one of their patented incoherent ravings printed that day. First there is Jack Spatafora who is either a Joycean streams-of-consciousness kind of writer or on a constant vodka-Red Bull drip. Some of his recent letters have included references to trombones, The Wizard of Oz, barber shops, attics, Claude Raines, risotto -- you could literally go cross-eyed trying to figure out what the guy is on about. When I got a letter to the editor published in the Tribune, I was relegated to the little-read "local" section, but every time ol' Jack farts out a thought it's front-page news. Then there's cutie-pie Mil Misic whose letters cover exactly four topics -- the shining sun, the turning leaves, the falling snow, and the blooming flowers -- but that doesn't stop her from getting published 18 times a year. And thank God, because we cannot reasonably be expected to keep track of the seasons on our own here in Chicago.

Yes, I am bitter. But I guess I will leave the old folks to their old media. Except that I just Googled Jack Spatafora and he has a blog. Doh! I'd better not find my mother amongst his followers...

Reading Autism Articles Like It's 1979

OK, so here is where we differ today versus 1979 per that ancient autism article in Rolling Stone:

There seemed to be no concept of the autism spectrum that we speak of today. When a specific symptom of autism is discussed, it sounds as if every autistic child is equally affected, such as this: “For the autistic, there seems to be little difference between ‘father’ and ‘light bulb’.” The author is referring to the emotional detachment of some with autism, but this is not true of Audrey (and many others with autism), who is very attached to and affectionate with her parents and others that she is close with. She knows perfectly well that there is a difference between her father and a light bulb...although Mommy remains unconvinced and really only considers one of them to be a consistently useful household fixture.

The author talks about “hyperskills”, some of which are familiar such as uncanny language, music, and memory skills, but also gross motor skills: “Autistic toddlers can often throw balls consistently within an inch of someone’s hand across a large room.” Huh? Audrey can barely throw a ball consistently within one inch of herself. An expert explains such skills with this pearl, “Some people can concentrate, others can’t. Then there are those who concentrate far too well.” I don't think that you would hear any "expert" today accuse autistic children of concentrating too well.

It appears that mostly the more severely impacted children were being diagnosed at that time: "Joey lives in an institution, as do many autistic children whose parents have given up." He also mentions extreme self-injurious behaviors like children who bite off their own fingers and scream until they blow out their vocal chords. We've come very far on this front. Today it is mostly the parents who are being institutionalized, biting off digits, and shredding their vocal chords.

The author observed behavioral therapy using the Lovaas method. They had only just recently stopped using electric shocks as a negative reinforcer, but were still using the "aversive no". Meaning that a therapist screamed "NO!" in a child's face every time they didn't elicit the correct response/behavior. To justify this method, the experts said "Have you ever seen a child pull out his own jugular vein?" and pointed out the much worse treatment they would get in an institution. Such rationalizations wouldn't fly today.

The statistics included in the story are interesting. I've heard it many times quoted that the prevalence of autism has grown from 1 in 10,000 in the 1980's to the 1 in 110 figure today. But this author says 1 in 2,000 were autistic in 1979. No source is given for that figure. He also says that at that time there were only 50 private autism programs in the country and just 150 public school classrooms dedicated to autistic students. For that reason alone I'm so happy to be living in the 21st century.

I'll end with a quote from the article with which I will definitely not disagree:

"The children often share a haunting, numinous beauty, as if the intrusion of coherent reality is the thing that ages and distorts the rest of us."

The Girl With The Faraway Eyes

I can distinctly remember the first time that I ever heard of autism. I was in high school and there was an article in Rolling Stone called "The Kids With The Faraway Eyes". I was completely intrigued by it, and I'm pretty sure that I even wrote a school paper about it.

I was curious if my memory served me correctly, so I went back into the magazine's archives and found the article. It was published in March of 1979, which would have made me a 16 year old sophomore. Ted Nugent is on the cover -- I'd like to say that he wasn't the reason that I bought the issue, but I couldn't swear to it. I had, after all, seen the Nuge at the Super Bowl of Rock at Soldier Field, headlining a bill that included .38 Special, Journey, Lynyrd Skynyrd, and REO Speedwagon. Devil horns, y'all!

In addition to the scintillating interview with Nugent ("I'll be cuttin' some real nostril-flaring farts by the time we hit Fort Wayne"), there are stories on the Clash and Toto, reviews of albums by Emerson, Lake and Palmer, Firefall, and Phoebe Snow, and an obituary for Sid Vicious. Sandwiched amongst all of that 70's fabulousness is the article that I remember. When I read it back in the day through my teenage eyes, I could never have dreamt that almost precisely 25 years later I would give birth to a child who would be diagnosed with the very same disorder.

Before I re-read it, I wondered if I would be struck by how much in the dark ages it would seem compared to today or if, 31 years on, I would be depressed at how little had changed. My first time through it seemed to be unfortunately the latter. Much of the article could have been written today. The author visited self-contained classrooms and described behaviors that he seemed bewildered by, but are old hat to us now: self-stimulatory behaviors (he mentions them flicking fingers in front of their faces and rocking), sensory processing (one child had a meltdown when he had to transition from walking on a rug to linoleum) speech delays and echolalia (one child sang "McDonald's is yer kinda place, it's such a happy place!" Who else remembers that jingle?). The teachers were using behavioral therapies that aren't all that different from Audrey's therapies today. But there were some important differences, and I will highlight those in my next post. In general, I wish that we had come further in three decades, but I'm still happy to have an autistic child now rather than 31 years ago. But I wonder what they will say about us 31 years from now?

I Need a Vacation From Thinking About a Vacation

Steve travels nearly constantly for his job and has racked up tons of hotel points and airline miles. He's always prodding me to go on vacation and has suggested Sea World in Orlando, which Audrey would love and which one would think I would be excited about. But one would be wrong. The thought of going on vacation fills me with mortal dread, and it's not just about flying. I think that most parents don't exactly look forward to flights with their kids no matter how "typical" or well-behaved they are. Every parent has to load themselves down with entertainment for the flight and shop for special surprises that they can bust out when interest in everything else they've lugged along has waned...usually about 5 minutes into the flight. The advantage of autistic kids under these circumstances is that there are some things that they will never lose interest in, and I am happy to indulge these fixations if it gets me to our destination without landing on the no-fly list. A fully-charge iPhone and DVD player would pretty much do the trick for Audrey.

No, it's the rest of the trip that I'm worried about. The part where we have to replicate every bit of our everyday lives, especially as regards Audrey's diet and supplement regimen. Because there's no vacation from that. Last summer we drove to Michigan for a weekend and I had to pack a cooler full of meds, supplements, and special foods for Audrey. How in the world could we fly somewhere? With the restrictions on carry-on liquids, I'd have to pack most of it in checked baggage. I picture me opening up my suitcase on the other end and finding all of my clothes awash in cod liver oil and fermented kefir. And Steve being more upset about the loss of the medicinal supplements than he is about the fact that all of my stuff is ruined. And me wanting to kill him for that. And us starting in on what will surely be one continuous fight for the duration of the trip. Aaaaah, I'm feeling more relaxed already.

Then there are the dietary restrictions. I wouldn't have to worry about packing food and having pellets of uncooked quinoa mixed in with my cod-liver-oil-and-kefir suitcase stew because as luck would have it...there is a Whole Foods just 10 minutes down the road from Sea World! Hurray! Now we can go grocery shopping and, because we will of course have a suite with a kitchen, we can cook all of our meals in the room and clean up afterwards and pack meals to go that we can bring to the park so that we don't have buy all of that nasty fast food and Audrey won't at all be upset to see all of the other kids scarfing down french fries and snow cones and pizza and ice cream and this is going to be the best vacation ever!!

One of these days I will suck it up for Audrey's sake. I will just have to remember to pack a few meds of my own.

Blame Game

Audrey quote of the day: "I like when it's Momma's fault."

One morning she woke up with wet undies and was quite upset about it. I told her that it was my fault because I hadn't reminded her to pee before she went to bed the night before. I wasn't sure that she understood "fault", but several days later she said this quote when she got into hot water for writing all over her arms with markers.

Photography by Audrey