Friday, April 30, 2010

I take my judgment straight up, with a twist

So here's where I'm at with my self-imposed reading assignment: I read Sippy Cups Are Not for Chardonnay and am halfway through Naptime Is the New Happy Hour. Not surprisingly, they are easy-breezy reads...composing this post will probably take longer than it did to read one of them. Both are written by the same author, Stefanie Wilder-Taylor, and both concern her first child. Sippy Cups covers infancy and Naptime, the toddler years.

In the middle of reading, I decided that my eyeballs were in danger of getting permanently stuck in the rolled-back position, so I took a break and did a little internet research on the author. This brought me to her blog, "babyonbored", where I found out that her "baby" is now going on 6 and that she subsequently had twin girls who are now toddlers. Turns out that one of the twins was only 2 lbs at birth, has chronic feeding issues, and from what I could gather (way too many posts to weed through...I wonder if I will still be blogging five years from now?) is on and off feeding tubes to this day. Also, after defending every new mother's right to get completely drunk off her ass, she eventually admitted that she was an alcoholic, has been sober for a year, and, as luck would have it, is going to be featured on 20/20 this very night in a segment about rummy mummys.

I could keep with my snarky bad attitude (because I reallyreallyreally love my snarky bad attitude) and say that it serves her right after how much she glorifies drinking in her books, which she absolutely does. Or, going back to my original premise, mock and judge her for feeling like her life is that stressful compared to mine. But I just got done watching Oprah, and I realize that that would just be invalidating her truth. Show me the way, your O-liness...

The reality is that there is always someone who has it better than you, and there is always someone who has it worse. It's really not very instructive to look at either the greener or browner side of the fence. Yes, it can provide a momentarily sense of perspective, but you will quickly be snapped back to your own reality. When I'm having a particularly bad day with Audrey, it frankly doesn't make me feel better to hear that someone else has a more severely autistic child. It just makes me more depressed that there are so many autistic children. And I'm sure that on Stefanie Wilder-Taylor's worst day, she really wouldn't care that I have it so much harder with Audrey. And not just because she would have more than likely been hammered. As it turns out, she had her own trials and tribulations with her preemie twins.

I would still like to continue with my book report, and I'll do a post for each stress-inducer discussed in the books that led the author to reach for the corkscrew. But I will strive to keep the judgment to a minimum. Oprah would want it that way.

Thursday, April 29, 2010

Audrey la Exploradora

Audrey quote of the day: "Ayudame!" Screamed from the bath tub when she got soap in her eyes. You know that she's watching too much Dora the Explorer when she has a better command of pronouns in Spanish than in English. She's also taken to saying "hola" " buenos dias" and "vamanos". And at one point she was asking that her birthday cake have a picture of herself on it, because both Swiper the Fox and Issa the Iguana had birthday cakes with pictures of themselves on it.

Audrey goes through phases with her cartoons...she's been through Little Einsteins, Mickey Mouse Clubhouse, Max & Ruby, and Diego. She doesn't like to mix things up and watches one series until she's seen them all 10 times over and even she is sick of them. I don't know which cartoon started it, but they all now employ that irritating device where the characters look directly into the "camera" and ask questions or make demands of the kids. Like tell us which path leads to Chocolate Lake, or yell out "Salta!" louder and louder so that we can jump even higher in our rocket sneakers to reach the Cloud Castle. OK, I rattled those off a little too easily. Anyway, Audrey reacts to these requests the same way that she does in real life, which is to say that she completely ignores them. Which robs me of the rationalization that these stupid shows are in any way educational. Though in some twisted way I am relieved that she is at least consistent in her response...I'd hate to think that she was more responsive to Dora than anyone else.

The greatest parody ever of Dora was years ago on Saturday Night Live, where a cartoon character named Maraka asked such questions of the audience as "Can you break a fifty?" and "Do you know why my father left me?" So, so wrong.

Tuesday, April 27, 2010

Calling Dr. Love

This is what your pediatrician would look like if you had let your husband do the pre-screening. Baby Doctor Barbie is part of the "I Can Be..." line, which includes a dentist, a race car driver, and a veterinarian. Somehow they all manage to do their jobs in 5-inch heeled gladiator sandals. I know Barbie has come under fire for being a bad role model for girls by promoting an unattainable body image, etc, but I still love her. I played with Barbies until I was like 12, and I never developed an eating disorder trying to look like her. I just hate my body like every other self-loathing woman...hey, wait a minute...BAAAAAAAAARRRBBBBBBBIEEEEEEEEEEE!!! I can only hope that Audrey's autism will come in handy in this case, and that she will be as literal with her Barbie dolls as she is with everything else. She doesn't always get imitation, which in this case is a good thing.

Our friend Amy gave Audrey both Baby Doctor and Dentist Barbie for her birthday, noting that their outfits kind of looked like those adult Halloween costumes that are all called some version of Naughty/Saucy/Trampy {insert occupation here}. The irony is that if you try to find an adult Barbie Halloween costume, they are super-cute and riff on the retro Barbies from the 50's and 60's. There's even a prom date Ken as well as a 60's Ken complete with fringe vest. So I guess a Sexy Barbie costume would be redundant and it's really only fun to dress up as "naughty" versions of normally conservative personas. Which explains the Strawberry Slutcake costume.

Sunday, April 25, 2010

How To Train Your Dragon

I'm so happy and relieved to be raising an autistic child in the year of our Lord 2010, when everyone is raising their typical children to act like total raving lunatics. I can't imagine having an autistic child in the 1950's when children were to be seen and not heard. I am the biggest fan of our generation's child-centered/attachment/TCS (Take Children Seriously) parenting that you will ever find, because these philosophies result in children that make my child look like she's the valedictorian of a charm school in comparison.

Yesterday we went to see the new Disney movie, Oceans. The movie was full of kids that looked to be about 6-8 years old, who proceeded to run around the theater throughout the entire movie: stampeding down the aisles, changing seats, running in and out from the concessions, talking loudly, yelling to each other, etc. I was surprised because it's not a movie that is solely for kids in the same way that these ubiquitous 3D cartoons are. And indeed there were some childless adults in the theater who I'm surprised didn't walk out and/or stick their foot in the aisle to see one of them go flying.

I can't imagine that the Sensory-Friendly movies that I blogged about earlier are any more raucous than this movie was, thus proving my point that special needs parents needn't feel restricted to those showings. Audrey's biggest offense is commenting at the screen during the quieter moments of the movie. Really, if we restricted ourselves to Tyler Perry movies, she wouldn't seem out of place at all. Yesterday, she provided such illuminating commentary as "There's lots of Nemo fish" and "He's swimming", that I'd like to think clarified the complicated plot line for our fellow movie-goers.

Saturday, April 24, 2010

7th Heaven

Audrey quote of the day: "Can I figure out how the ugly 7 can help you?"
Where to start.
Audrey calls the European seven with the line through it (see pic) the "ugly number 7" and the unlined 7 as we Americans typically write it, "the pretty number 7". I'm not sure how any cardinal number could provide me the kind of help that I need, but she's welcome to try to figure it out.

When she talks about numbers like this, I'm reminded of the autistic savant, Daniel Tammet who wrote the book Born On A Blue Day. He's the guy that can recite pi to 20,000-some decimal places, and says that to him numbers have little personalities and that's how he can remember and manipulate so many of them at once. I saw him interviewed once by Diane Sawyer and he said that she reminded him of the number 315, or something like that. I wonder if Audrey sees numbers like that, and if so what number I look like to her? 911? The crisis hotline number for the nearest psych ward?

I think that a lot of parents of autistic children secretly hope that their children will display some superhuman, savant-like talents, but that will not be the case for most of us. Which, speaking for myself, is probably a good thing. I don't need any extra temptation to smuggle my 6 year old into a casino or run away with a bunch of carnies.

Wednesday, April 21, 2010

Members Only

The latest statistics from the Centers For Disease Control say that 1 in 110 children have autism, and the figure for boys is 1 in 70. So where are they all? It seems like I see 110 kids in just one trip to Target. On average, like 105 of them are screaming their heads off, but not because they're autistic. Where all our autistic brethren be? It's not like I don't recognize the signs. I just never see any of them out and about. We were just at the mall yesterday where there were tons of kids...if the statistics are correct, there should have been at least one other kid keeping Audrey company flapping her arms at the bottom of the escalator.

One time I saw a boy at the park who looked be about 2 1/2...he couldn't converse much, but he was able to sing several Beatles songs word for word. I thought that I had found a fellow "club" member, but it turned out he just had a nerdlinger Beatlemaniac father who was coaching him to be the next You Tube sensation.

Then there was the time that we were at McDonalds and I saw a boy that appeared to be autistic, but I wasn't sure when I saw a woman using sign language with him. He seemed to be able to hear and speak, but did demonstrate some autistic behaviors. I struck up a conversation with the woman who confirmed that he was indeed autistic, and she explained that, even though he could hear perfectly well, they used sign language because it seemed more effective for him as his "receptive" language. Meaning that he was more likely to pay attention and follow instructions that were signed rather than spoken to him. I had never heard of such a thing, and immediately felt guilty for not having tried this approach with Audrey.

But my feelings of inadequacy didn't end there. This woman looked like a million bucks...smokin' bod, stylish clothes, perfectly coiffed. She could not have possibly been his mother. Besides her physical appearance, she also appeared to bring far too much energy to the situation to be his mother. She was all over him -- signing to him, engaging him, and redirecting him from repetitive behaviors -- while I sat there watching Audrey repeatedly drop an air hockey puck into the goal slot with my face covered in cinnamon melt. I rationalized that she must be a therapist who had him on a community outing. Then I heard him call her “Mommy”. Doh! Why wasn't I wearing size 0 skinny jeans and stiletto-heeled shabooties? Why did I always look like Glen Campbell's mug shot, while she looked like....that?

Something didn't smell right, and it wasn't just my unwashed hair. She claimed that her son went to school in our school district, but didn't seem familiar with any of the teachers, programs, or administrators that I mentioned. And there was something that I just couldn't put my finger on that gave her an air of detachment. Finally, she rounded up her son and said that she had to go...wanted to beat the traffic up to Grayslake. Where she lived. Fifty miles away from where her son lives. A-HA! I knew it. Before I could pry into the circumstances that led to this living arrangement, she was off. Hey, I could look that good too if I lived an hour and a half away from Audrey. Well, maybe not that good. I would probably have to enact my fake-my-own-death plan and get a hell of a lot further away than 50 miles to look that good. But I would look better for sure. I would at least be upgraded from Glen Campbell’s mug shot to Joyce DeWitt’s.

Mommy's Had Enough Whine

Some of you know I've been noticing the titles of some of these humorous parenting books, which seem to be a dime a dozen lately. Here's a sampling of some titles, and tell me if you notice a pattern:

Sippy Cups Are Not for Chardonnay
Naptime Is the New Happy Hour
Daddy Needs a Drink
The Three-Martini Playdate


Wow. Parents of neurotypical kids really like to hit the hooch. And what stresses are they drowning exactly? Getting tired of hearing those I-love-you's? Too much chauffeuring to parties, playdates, and sporting events? Waaaaaaaaaaahhhhhhh!

I've decided to take one for the team and read one of these books. I'll get back to you with my book report on the horrors of raising perfectly normal children. Oh, the horror, the horror. Even without reading one, I've already decided that I'm going to write my own. I don't know what the content will be, but I know what the title will be: Typical Parents Are a Bunch of Drunken Pussies.
Oh yes I did!

Tuesday, April 20, 2010

A Barbie/BlackBiscuitBirthdayBash

OK...yeah...cool...Barbies.

















Well, this is all very nice...but I think...aren't you forgetting...um...I think there was supposed to be...maybe something else...











Whew! You guys had me going there!















Oh yeah...that's the stuff.















Can I take this shirt off now? I've had it on for like 3 days...

Monday, April 19, 2010

Monday's Child Is Fair of Face...

HAPPY BIRTHDAY, AUDREY! 6 YEARS OLD TODAY!

On April 19, 2004, Audrey Lynn arrived. She was due on April 18, and I was very concerned that she would arrive on the "evil date" of April 20, which is Hitler's birthday and the anniversary of Columbine. Little did I know that April 19 was not much better, as it is the anniversary of Waco and Oklahoma City. I guess I should have known that we were in trouble. Instead I chose to focus on her having the same birthday as Kate Hudson and Ashley Judd.

This year is the first year that her birthday is on the same day of the week as it was when she was born. She was born at 10:00 on a Monday morning in Palo Alto, California. I had been starving myself all weekend for fear that I would repeat my sister's seafood fettuccine fiasco when she went into labor with my niece. I watched HBO's Angels in America the night before. Al Pacino as Roy Cohn was dying of AIDS, moaning "Pain is life. Pain is life." I wanted to remember that when the contractions started. Thankfully, Audrey was easy on me...no puked-up pasta and no Ethel Rosenberg hallucinations. It's been the hardest six years of my life, but I wouldn't trade them. Audrey is pure love. Today, all she wants for her birthday is a "black cookie". Not sure what this is. She loves chocolate, and definitely knows how to ask for a chocolate cookie. So what's with the black...Licorice? Squid ink? Shinola? She will get several Barbies, a Barbie house, and a Barbie car because that is what a 6-year old is supposed to get. But you'd better believe that she's also going to get that black cookie.
video

Sunday, April 18, 2010

SCD: The Start Cooking Diet

Erin responds:
I have a love/hate relationship with this diet. I did NOT want to do it, I tried so hard to AVOID doing it but when my husband said, "If Zach is not worth it than don't do it" how could I resist? I wanted to hate it and I wanted it not to work. I called my mom the first night and said, "29 more days..." My doctor said it was easier and cheaper than GFCF...Huh? I disagree on both counts. We just finished 4 1/2 months of GFCF and with no change in our son Zach we started SCD.

We eat lunch at 11:30am. I used to ask the kids what they wanted for lunch at 11:25am. Now when Zach gets on the bus at 8:50am, I start lunch. I have to have a plan, I have to have the ingredients, and I have to have a glass of wine every night to tolerate it all. I dream about...almonds. I bought a 5 lb. bag of almond "flour" (not sure why they call it flour, just crushed almonds) and it lasted me 4 days. I just ordered a 25 lb. bag so we'll see how that goes. This makes life a little easier since I was grinding my own nuts in the beginning. What do I make out of almonds? Pancakes, bread, muffins, pizza crust, the better question is what DON'T I make out of almonds.

I have suffered from chronic stomach pain for over a year now. $30k in testing and poking and prodding and I find myself with celiac and Crohn's. My doctor's remedy? Take 10 pills a day and no more gluten. Seemed easy at first but after a few weeks was quite tedious. After about 2 weeks on this diet I quit taking my pain pills and cut my pill intake in half. No change. Wow, that is pretty cool. Another week and a half later and I stop taking my meds, no pain. Wow, that is VERY cool. (I am by no means a medical expert and do not recommend anyone quitting meds without a doctor approval so don't sue me)

I am left with a horrible conundrum. I stay up til midnight cooking every night and feel like a million bucks? Or give in and see what happens if I cheat? How long do I have to do this?! These are the questions floating through my brain 24 hours a day now. We are beyond social rejects. No one can get near us at meal time. My mom, who loves to cook and could feed an army, still gets all choked up if we discuss food. Our friends have everyone over and order pizza. *Insert jealousy here* We have turned down invitations to 3 birthday parties for our son with autism. Please note the irony here, a child struggling with social issues and fighting to fit in, sitting at home and missing the party. But we dare not irritate that little belly of his with birthday party poisons such as cake and ice cream!!

Zach has made some pretty amazing accomplishments. He walked right up to a woman working at the grocery store and started chatting her up. Huh? We were going for a walk and he started talking to a new neighbor, "Where are you moving here from?", he asked. What? He said to me the other day, "Look how cool I am mom!" He has never known the word cool before. Getting on the bus just yesterday, "Bye Mom, have a great day!" After 8 months of going to kindergarten, this is the first time he has said this to me. As I stood there and teared up, the moms of the typical kids looked at me like I was nuts. Every day when I pick him up the other kids shout, "BYE ZACH!" and he responds with a fact about Rhode Island. Last week he looked over and yelled "Bye!" to his classmates. HE initiated it! These moments in our lives are priceless, and I feel like I must give thanks to this diet consuming me.

I hope to one day embrace this diet with a positive attitude and sing from the roof tops that I feel amazing and my little boy is breaking out of the haze which has surrounded him for years. Until then, I'll just say it sucks.

Friday, April 16, 2010

SCD: The Soul-Crushing Diet

Most of you probably already know that "elimination" diets are commonly put in place for children with autism. Without going too much into the science behind it, the theory is that there is a brain-gut link that affects children with autism, and that by alleviating some of the gastro-intestinal distress that is so common in these kids they will be better able to focus and learn.

The most common diet is the gluten-free/casein-free (GFCF) diet, which eliminates wheat flours and most dairy products. Then for those that think that GFCF is not nearly punishing enough, there is the Specific Carbohydrate Diet (SCD) which further eliminates remaining grains (rice, potatoes) plus all refined sugars. Both diets are extremely hard to implement, especially if, like most people, your diet is carbo-licious. You've probably noticed how much more commonly available gluten-free products are in the store and even on some restaurant menus, so it's definitely become a lot easier to go GFCF. But the real difficulty comes in moving from GFCF to SCD because now you've become dependent on the store-bought gluten-free items that are almost always made with rice flour and sometimes have quite a bit of sugar as well.

With that as background, let me tell you about my friend Erin. I first met Erin a couple of years ago when her son Zach was preschool classmates with Audrey. Zach is also on the autism spectrum and Erin had just started trying to implement GFCF. At that point, we had had Audrey on GFCF for nearly two years and had recently gone SCD. Every day at the school dropoff, Erin showed up looking like she was about to commit hari-kari over GFCF, and I was all "you have noooooooo idea." Erin didn't last too long on GFCF at that time. We lasted 6 months on SCD and then reverted back to GFCF.

Flash forward to the present: Erin herself was recently diagnosed with celiac and Crohn's disease and told to go on the SCD. Erin now lives 200 miles away from me, but I think I could hear her scream from here. Here's an idea of what you are in for with the SCD...it's not just the fact that you have to change your diet, tamp down your cravings, and use all of your willpower not to cheat. It is also a TON of work. Check out a sample menu from the bible of the SCD, Breaking the Vicious Cycle by Elaine Gottschall:

Breakfast:
Homemade nut muffin with butter and homemade jam

Lunch:
Tuna fish made with homemade mayonnaise
Homemade pumpkin pie

Dinner:
Homemade spaghetti sauce served on a bed of boiled beans or spaghetti squash
Cabbage salad with homemade mayonnaise
Homemade cheese cake made from homemade yogurt or homemade cream cheese made from homemade yogurt

I have not inserted any extra "homemades" in there for comic effect. That is really how many times the word is used in just one sample daily menu. Diarrhea is really so unfairly maligned. I mean, how bad can it be compared to being on this diet? Sure, you’re spending less time in the bathroom but at the cost of spending all of your time in the kitchen. Erin told me that it takes her 3 hours to make ketchup. Three hours for a condiment!

I found the SCD to be one of the most difficult things that we've done since Audrey was diagnosed, and for my money we did not see much benefit. Next I will allow Erin to provide the "counter" to my "point", and see what she thinks of it now that she's about a month in...to be continued.

Thursday, April 15, 2010

Duck, Duck, Goose

video

This movie shows what Audrey looks like when she is excited. The current objects of her affection are Canadian geese and ducks. She is completely obsessed by them, and wants to stop and chase after every one that she sees.

Which is sort of problematic since there seems to be one every square yard around here. They are everywhere anymore...sitting on lawns in our neighborhood, in ditches by the side of the road, and of course in every body of water from retention ponds to parking lot puddles. It is impossible to make a trip anywhere without seeing one or a hundred on the way. And Audrey pitches a fit nearly every time we pass one by without stopping. I watch her in the rear view mirror when I'm driving hoping that a gaggle that I'm passing will somehow escape her gaze.

I can sort of see that a Canadian goose might be the most exciting thing that one could see during a car ride through our strip-mall-laden suburban landscape, but I really get frustrated when we go somewhere that should hold more interesting sights and she is still fixated on geese. Like the zoo for example. The zoo where there is all manner of exotic animals from far-flung continents that you would never otherwise see anywhere else except at the zoo. The zoo, where you can see White-Cheeked Gibbons, Red-Capped Mangabeys, and Cotton-Topped Tamarins...and somehow Audrey is still only interested in Turd-Dropping Vermin.

She bee-lines it right for the fountains which are always loaded with them. I watch her do her happy dance, thinking how I will have to get my carpets detailed again when she inevitably tracks more goose shit into my car...and how I really should have saved the entry fee and just taken her to the Kmart parking lot after a good rain.

Tuesday, April 13, 2010

Mixed Emotions

Audrey quote of the day: "I broke my body." Said in reaction to me slightly nicking her skin as I was clipping her fingernails.

Just a little melodramatic, and made additionally funny when I think of how she reacted when she really "broke her body". Last fall when she broke her arm falling off of some monkey bars, she kept screaming, "I need a band-aid! I need a glue stick!"

Sunday, April 11, 2010

Scooby Don't

Audrey was bitten on the face by a dog really badly when she was 3 years old. You would think that this would have made her mortally afraid of dogs for the rest of her life, but somehow she still loves them. I, however, have never been a big animal lover. I know that this is nearly the most unpopular thing that I could say in this pet-crazy nation, but there you have it. They certainly aren't trying to endear themselves to me when they try to chew half my daughter's face off.

Audrey is more nervous around dogs than she used to be since she got bit. Her initial instinct is still to get excited and run up to dogs, but if they turn and start walking or lurching towards her, she turns on her heels and runs the other way. The cruel joke of this is that I am then left to make conversation with the kindly people that have already stopped for Audrey to say hi to their dog.

Yesterday was a typical scene: Audrey runs up to a dog. The dog moves towards her. The dog owners nicely stop and ask if she wants to pet the dog. Audrey is already 20 feet away, running in circles and flapping her arms. I am left to do the thing I would never in a million years do otherwise -- pet the nice doggy, ask what his name is, tell them how beautiful and wonderful and sweet he is, all the while trying to distract them from the fact that Audrey is running in circles around us, getting tangled in the leash, falling on her face, extricating herself from the leash, and hyperventilating with joy. The dog owners go to move on, possibly sensing my insincerity, and Audrey starts whining. I tell her that she has to say goodbye to Maggie/Murphy/Bailey/Brady/Grady/Sadie. As she is torn away and forced to move on, she says "I want a dog to be Audrey's dog, then it couldn't say goodbye."
All together now. Awwwwwwwwwwwwwwwwwwww. Shut it.
Still. Not. Getting. A. Dog.

Saturday, April 10, 2010

HBO's Temple Grandin

I loved loved loved HBO's movie about Temple Grandin. It aired a while back, but I only got around to watching it recently. For those of you who have HBO and missed it, I'm sure that they are still re-showing it. Dr. Grandin was diagnosed with autism in the 1950's when not much was known about the disorder. In spite of this, she is a huge success: a doctor of animal science (got her doctorate at my alma mater, U of I) and professor at Colorado State University. Watching the movie, my husband Steve was impressed that they found a child actor to play Temple Grandin in her early years. Steve has always been concerned that it would be difficult to find a child actor to "play autistic" in the movie version of our life. And that is definitely the only stumbling block to getting a movie made about our lives, so we are thoroughly relieved.

I had Audrey when I was 40 and she does not have any siblings, so her future is something that I worry about every day. I see the disabled adults wiping down tables at McDonalds or the exercise equipment at the gym, and then I see Temple Grandin. I realize that there is a wide gulf in between, and my hope for Audrey is that she lands more on the Temple Grandin end of the spectrum. Being a city girl, I would prefer that her future not include livestock and Western wear, but I realize that I am not in a position to be picky. As long as she is able to support herself and live independently, I will finally be at peace. I guess if I could somehow be guaranteed that, I could even live with seeing her in a bolo tie...

Friday, April 9, 2010

Reply Hazy, Try Again

Audrey is verbal, but not exactly what you would call conversant. She still doesn't quite get that a conversation is a two-way street, and tends not to pay attention to questions or comments directed at her.

She has lots of speech, but it tends to fall into the following categories:
The obvious: "That's Lauren!"
Hyperbole: "The computer is so beautiful."
Angry declarative: "I get mad when I have to share!" or "We're not going to use the iPhone right now."
Repetitive: "Can I do some shenanigans?" was cute the first 1,000 times she said it.
Still processing instructions she was given months ago (these are sometimes whispered under her breath with her hand over her mouth): "I should not say things that don't make sense."

But the best is when she has your side of the conversation for you. This happens when she is trying to get you to agree to something that she knows you don't want to: "Can I have some chocolate? Good idea! The answer is yes!"

We don't even have a Magic 8-Ball, so don't ask me why all of the responses she puts in other people's mouths sound like they come straight from that classic toy. I need to teach her some of the negative responses so she can work them into her repertoire. Chocolate at 8:00 in the morning? "My sources say no".

Thursday, April 8, 2010

The Infamous Messrs. Smiles


People of Earth, bow to my will...

Mr. Smiles Says "Follow Me"

To everyone who has set themselves up as a follower of this blog: Thank You! Thank You!

To anyone else that is visiting, please please set yourself up as a follower. I'd love to know who is out there...much like my daughter, I only believe what I see!

Audrelina Ballerina

video
Audrey is taking ballet classes at our local park district. It's the first time that we've attempted a class for "typical" kids rather than one through the special needs arm of the park district. They very nicely let us provide our own aid, and Audrey goes to the lessons with Lauren, one of our home-based therapists.

Audrey has a lot of anxiety over doing new things, especially when it also involves separating from Mom. So we write "social stories" for her, which tell her about where she is going and what to expect. Every social story basically boils down to, "You are scared shitless to do this, but you are going to have the time of your life doing it." Whenever Audrey sees us coming at her with a new story, she rips it out of our hands like breaking news coming hot off the presses. As she reads it, I watch her furrowed brow gradually turn upside down and by the time she reaches the end of it she is practically euphoric as if to say, "Wow! I'm going to have a great time! It says so right here! Why would this piece of paper lie to me?" And off she goes. My heart breaks a little as she flounces off in her tutu, so completely trusting of us and the words that we wrote.

But the thing is, she does have a great time. She just needs the extra nudge to push her through those new doors. After ballet class, she often runs through a script that is a combination of the social story and instructions from class:

I sat in chairs.
We go to circle.
Do the positions.
I try not to cry.
Go see Mr. Smiles.
I follow the rules.
Get a surprise.
I come home and see Mom.

From what I understand, Mr. Smiles is some kind of smiley face stuck on a beanie baby body that somehow conducts mind control and gets the girls to do whatever the teacher says. And here I am going to the trouble of writing social stories when all I had to do was draw a smiley face on a bag of rice.

Wednesday, April 7, 2010

Top Ten Benefits of Having a Child with Autism

10. You have an automatic excuse to get out of social gatherings that you really didn't want to attend anyway.
9. Sometimes I look so haggard, I get a senior citizen discount.
8. The time I've spent reading labels automatically qualifies me for a food science degree.
7. Get to save time by speaking exclusively in acronyms, like ABA, GFCF, IEP, SCD, DAN, RDI...
6. I can't possibly be expected to lose weight or get to the gym with all of the stress I'm under.
5. No need to waste your money on (choose any that apply): GPS, calculators, encyclopedias, alarm clocks, Hooked on Phonics...
4. Get to learn cool new words that you never knew existed in the English language like "perseveration", "echolalia", and "casein".
3. Sometimes I get mistaken for celebrities...like Phil Spector or Nick Nolte.
2. When our kids misbehave in public it's because they have a serious neurological disorder. What's your kid's excuse?
1. Our kids are soooooooo much cuter than those FLTK's (Funny-Looking Typical Kids).

Tuesday, April 6, 2010

Another Reason to Love the White Sox

It was an awesome home opener yesterday for my beloved Chicago White Sox: beautiful weather, a 3-hitter by Mark Buehrle, and a 6-0 victory. I am a lifelong White Sox fan. The worst cosmic joke ever played on me by the universe was having me come to the realization that Audrey was autistic between games 2 and 3 of the 2005 World Series, which the White Sox went on to win for the first time in 88 years. Thanks for keeping things in perspective for me, universe!

Manager Ozzie Guillen is known for his colorful personality, incomprehensible Venezuelan accent, and his profanity-laced tirades, which would surely be considered much more offensive if you could figure out what the hell he was saying. My reasons for loving Ozzie are too many to count: he's the manager of my favorite team, he led the White Sox to a World Series Championship, his profanity-laced tirades, calling Cubs fans stupid last season (sweeeeeet!), but if those weren't enough reasons, autism awareness is Ozzie's favorite cause. He is extremely active in the autism community, is on the Board of Directors of Easter Seals Chicago, and has been known to sport a TACA (Talk About Curing Autism) hat at his post-game press conferences.

Just when I thought I couldn't love him any more, Ozzie started to Twitter during spring training this year. Just what every loose cannon needs...a Twitter account! The team was understandably concerned about this development, and indeed within the first week Ozzie was in hot water for agreeing with something his son had tweeted that was critical of the team. I'm sure he got a talking-to over that. Now his tweets range from the trite (Back in chitown best city in the world!) to the inscrutable (Back to work loved is hard very hard but loved), to the unintentionally hilarious (my friend pat o connor just got in gage). Rock on, Ozzie! See you at Autism Awareness Night at the Cell!

Monday, April 5, 2010

My Rear View Mirror

Ever since Audrey reached the 20 lb. mark and we were able to have her face forward in her car seat, I have had my rear view mirror pointed downwards, trained on her in the back seat rather than at the traffic behind me. Sure, a cop had to follow me once for a mile or so and then yell at me over his bullhorn to get me to pull over, but other than that it's worked out fine.

In the early years, I mostly did it to keep tabs on her -- to see if she was becoming distressed, had puked, or fallen asleep. If the latter occurred, I had precisely 10 minutes to get home if I had any hope of transferring her into her crib and extending her nap. There were many a time that I had to tear-ass home to beat the 10 minute mark...hence the cop on my tail.

At 18 months old, I realized that Audrey had incredible visual memory and knew all of the routes that we travelled to our various destinations. She would become upset seemingly out of the blue, and I finally realized that this happened when I took a "wrong" turn that wasn't taking her to the place she had thought we were going. Ever since that time, whenever I look at her in my rear view mirror she has this anxious/confused/suspicious/distressed/concerned/"who farted?" look on her face that is priceless.

On the plus side, she is like my very own little GPS system. If I miss a turn or an off-ramp, she is right there to get me back on track. I'm counting on this to come in very handy when I become old and senile.

Saturday, April 3, 2010

Naked Lunch

For kids with sensory issues, nothing feels better than NAKEDNESS! Hopefully, I will not attract the wrong kind of followers with this photo. I've tried to be discreet with the black box, but now it looks a little like a Girls Gone Wild commercial.

When Audrey was younger, we used to brush her skin with a special brush and sing or play a song which included the following lyrics:
The tags in my clothes almost drive me insane
The seams in my socks, they cause me great pain
I'd much rather strip down and run around nude
But Mom says my classmates might think that was rude

We don't do the brushing anymore, but that song still rings in my ears.

Better quote of the day (maybe of the month, but it's still early) was said while on the toilet: "I'm downloading poo-poo."

Audrey's ATM

We have gotten our first taste of spring here in Chicagoland. I went to put a t-shirt on Audrey that was a holdover from last summer, and she said "I played with Renee in this shirt." I never ceased to be amazed by the incredible memories of these kids. I have no doubt that the last time Audrey wore that shirt she was playing with her friend Renee. She has no problem remembering what she wore 6-7 months ago, but somehow can't tell me what she did with my credit card that she was walking around with just an hour ago.

Audrey loves to stick credit card-like objects into slots. She loves ATM's and vending machines that have that automatic sucking action that pulls credit cards and dollar bills into the slots. I've caught her a couple of times jamming things into my husband's computer hard drive, trying to duplicate that experience. It's one thing if it's just random pieces of paper, but my credit card is a different story. I really needed to know where it went to, so Steve had to dismantle his hard drive. Lo and behold, there was my credit card, along with Aunt Stel's funeral card, my health insurance card (which had gone missing a long time ago and for which I had already requested a replacement), tons of hotel card keys from Steve's business travels, crumpled-up coupons, and some of the Dead Sea Scrolls.

Will this be a passing obsession or stick around for a while? One never knows...so from now on my wallet will need to be on top of the fridge and join our rotating collection of oddball objects that need to be kept out of Audrey's reach.

Audrey quote of the day: "I need me to help you." Pronouns are a bitch!

Friday, April 2, 2010

The Joy of Autexting

Audrey has figured out how to send text messages from my iPhone. She loves to send texts to her favorite "lady" (ABA therapist) Lauren. She likes to namecheck the other "ladies", Raven, Melanie, and Amy, in the texts to Lauren. Audrey texts like she talks, e.g.: repeating back and/or not always having much regard for what the other person is communicating. Could this be the new dream mode of communication for people with autism? It encompasses so many of their favorite things - letters, typing, technology, and communication without eye contact - all with much more immediacy than email.

Here's a sample "conversation" between Audrey and Lauren:

Audrey: Lauren
Audrey: Johnson
Lauren: Hi Audrey
Audrey: iwannaplayoutside (hasn't figured out the space bar)
Lauren: Tomorrow we will play outside.
Audrey: Tomorrowwewillplayou
Audrey: Audrey
Audrey: And
Audrey: Lauren
Audrey: That,s-from-audrey (knows she needs something in between the words)
Lauren: How are u?
Audrey: Search-phone
Lauren: Whats that
Audrey: Whats-that
Audrey: Heather
Audrey: Raven
Audrey: Amy
Audrey: Melanie
Audrey: Tha,ts-all-the-ladis

I do not have an unlimited text plan, but something tells me that I should invest in one.

AMC Sensory Friendly Screenings - Thumbs Up or Thumbs Down?

There is an article in today's Chicago Tribune (West Chicagoland edition) about AMC Theaters' Sensory Friendly Screenings of movies. This is a good example of two opposing philosophies as far as bringing our kids out into the community: should we try to accommodate their special needs or expect them to assimilate into "our" world? On one hand, it seems entirely fair to provide a setting for autistic people to enjoy a movie with the house lights turned up, the volume turned down, and no previews or ads to wait through before the feature presentation. I'm all for that, especially the last one. Usually Audrey has blown through most of the popcorn by the time the 15 minutes of previews are over.

On the other hand, the children are welcome to roam around the theater, dance, sing, and talk as loudly as they want during the movie. I'm not so crazy about that. I would like Audrey to learn how to behave in a movie theater. Knowing Audrey, if I were to take her to one of these screenings (which I haven't yet) just one time, she would not be able to understand why she couldn't act like that all the time in a movie theater and then I would only be able to take her to special screenings.

I am able to take Audrey to the movies quite frequently and we are usually even able to make it through to the end. But for Audrey the movie is the least interesting part of the experience. She loves the popcorn and candy, the arcade room with the flashing lights and that stupid vending game with the claw and all of the cheap toys, and stimming on the tiny little footlights on the steps inside the theater.

Audrey's quote of the day (so far...it's not even 9am!): "Last time you've been so tired today on Friday."

Thursday, April 1, 2010

Happy Autism Awareness Day/April Fool's Day!?!

I know that I am not the only one who has taken exception to the fact that World Autism Awareness Day coincides with April Fool's Day. With all the days on the calendar to choose from, today could very well be my 365th choice.


I'm also not entirely behind the new witchhunt against poor old Ronald McDonald. I can understand the argument about appealing to children and contributing to the childhood obesity epidemic, but really? Parents can't compete with a clown when it comes to taking control of their children's nutrition, health, and well-being?

I don't really think that you lay this all at the feet of Ronald McDonald, as if he is the sole reason, or even that much of an influence, on why children love McDonald's so much. If a costumed mascot can really have that kind of hold over our children, then why isn't the Hamburglar as much of a deterrent as Ronald is a lure?

I suspect that parents want to eat at McDonald's as much as their children, and I can understand that. Yes, it is the worst food on the face of the earth for you. But it's so damn tasty. In the past, I have not been above ordering a Happy Meal and giving Audrey just the french fries and toy while I enjoyed the cheeseburger and chocolate milk. While I would never in a million years order an a la carte carton of chocolate milk, for some reason I feel that I can justify it simply because it is one of the beverage choices with a Happy Meal. As is my usual drink of choice, Diet Coke, but why would I order that with a Happy Meal? What says "happy" more than chocolate milk?

I have not taken Audrey to McDonald's in a very long time, but I cannot claim that this is because I have cracked down on our diet. She always wants to go to the McDonald's with the Playplaces and then like clockwork comes down with some kind of dengue fever within 48 hours. They are the germiest, most disgustingly unhygienic places anywhere. The literal last straw for me was when one of our little friends came down from the play structure sucking on the straw of an old shake cup that looked to have been squirreled up in the tubular chutes and ladders since the early 90's. Forget about Ronald McDonald...the cartoon spokesman that I'd really love to see at McDonald's is Mr. Clean.

Audrey's new favorite word = shenanigans.
Example of her using it in a sentence: "Can I do some shenanigans?"
I think that she believes the definition of shenanigans is anything Mom doesn't want her to do. Which is about right.

Audrey's quote of the day: "I'm going to play on the computer in about an hour." Sounds fine. Except that she said this as she was walking out the door for school, and I'm pretty sure that she has no idea how much elapsed time = "about an hour".

Also, "Let's do some smelling." No clue.