Saturday, October 30, 2010

My 15 Minutes on WGN ChicagoNow Radio

Yeah, I'm not even quoting Andy Warhol.  I was actually on for exactly 15 minutes.  Here's how the day breaks down outside of those 15 minutes:

7:30 -- Wake up.  Pukey McHurlington decided to sleep in for the first time in her existence on the very day that I needed to get an early start into the city for my first ever radio appearance.

7:55 -- Leave the house without showering or brushing my teeth.  Hey, it's radio...no one cares how you look.  Suddenly remember that the show is hosted by two people who will be able to see me.  And smell me. 

8:30 -- I was told to arrive around 9:00-9:15.  I cruised into the city in record time, so I really could have taken the time to change my undies.

9:00 -- Meet with the producer.  Ask him where the pee-pee is cuz I really gotta go wee-wee out my hee-hee.  Yeah, I haven't been around a new adult in a while.

9:15 -- I'm escorted into the green room where I can hear the blogger that is on before me.  Convince myself that she is KILLING, that the hosts are clearly in love with her, and that they are going to miss her so much when she leaves that they will not be able to focus on me.  "Yeah, autism.  Great.  Has the That's Awesome blogger left the building?  Cuz she was awesome."

9:30 -- Enter the studio.  One of the hosts tells me during the commercial that they reach 7.5 million people in 38 states and Canada.  Glad that I didn't bother to change my undies because I just shat them.
Not 20 minutes earlier
I was that crazy lady.


9:43 -- I don't recall anything except a lone spectator -- one crazy old lady in a tam pressing her face against the window trying to see in.  Mom?

9:49 -- During the commercial, the host says that they've received a text question from someone in the 248 area code.  They figure out that 248 is Detroit.  Oh no.  "OK, we have a text here from Dani from the Detroit area..."  DANI!!!!!! 

10:00 -- It's over!  I did it!  Prepare to field the flood of offers to host my own special needs talk radio show.

4:38pm -- Still waiting.


 
Here's a link to the podcast for those of you that missed it live.  Thanks to all of you for your support and encouragement! 

Friday, October 29, 2010

Halloween Fabulousness for Under $5


1)  Candy Corn Tights: $4.00 at Target

2)  Halloween T-Shirt:  $.99 at Old Navy.  Bought on clearance after Halloween last year by Lauren who was shopping for disposable shirts that we could cut off and fit over Audrey's broken arm.  I considered it far too valuable to sacrifice, and was happy to see it this year.  Pay no attention to the year.

3)  Sassy Attitude: EndPriceless

Thursday, October 28, 2010

Bust Out Your Toot-A-Loops and Hammies: Mama's Gonna Be On The Radio

So I have this other blog that I've been cheating on you with (c'mon baby, don't be like that), and that blog is on a site called ChicagoNow which is affiliated with the Chicago Tribune and WGN. 

It's the same steez:  the wacky adventures of a special-needs-mom-on-a-banana-peel, only with more of a local flava.  Actually, it's that blog that should be pissed off at me because I have yet to write any original content for it.  Thus far, I've only managed to work up enough energy to copy over posts from here that cover local hijinx, like Audrey's adventures in summer camp, ballet, etc. 

ChicagoNow has a radio show that features some of their bloggers every Saturday morning, and this very Saturday, October 30, I will be one of the featured bloggers.  For my local peeps, I am slotted to be on at 9:30am.  For my non-local peeps, try to see if you can get any reception on AM 720.  Not to brag, but WGN is kind of a big deal around here.  It's a major kilowatt station that sometimes travels several hundred miles away if the wind is right and there isn't a competing station that interferes with it.  Try it.  I'll wait here. 

No?  They'll post a podcast after the fact here

I don't know why in the world I'm promoting this ahead of time.  I have never done anything like this before, have had two days to prepare during which time I have had Audrey home either puking or wiping snot all over me, and can barely form a sentence on a good day.  My correspondence with the folks running the show has been limited to email.  No pre-show phone interview, no list of the 7 dirty words that you can't say, no nothing.  What in the world would they do if I had a debilitating speech impediment or Tourette's Syndrome?  What in the world will they do when I freeze up a la Cindy Brady on that children's quiz show ("Baton Rouge!  Baton Rouge!  C'mon Cindy, you know this!")?

I'm extremely nervous and slightly freaking out over this.  If I really embarrass myself, does anyone know a guy that can hack into their website and destroy the podcast?  Wish me luck....


Wednesday, October 27, 2010

Pump This Up

I'm not a fan of those places with the jumpy house and inflatable slides -- in these parts the most popular one is Pump It Up -- and Audrey is not that crazy about them either.  She's never liked the sensation of any kind of instability, which is pretty much the definition of those places.  She has progressed from hating them and refusing to go in them entirely, to kind of seeing the fun but only if she is in them alone when she can be guaranteed that she will not be slammed into mosh-pit style.  Which means that she spends no more than 30 seconds in one before another kid comes along and sends her to the exit flap.

My objection to them is more around the hygiene.  Audrey always comes down with some kind of dengue fever within 48 hours of going to Puke It Up.  I'd hate to think what would turn up if they did a test on one of the inflatable obstacle courses like they did on shopping cart handles. Whatever is growing in there is way virulent and laughs in the face of that little squirt of anti-bacterial gel that you get on the way out.

Several times a year one of the students at Audrey's school will have a birthday party at Pump It Up during the school day.  When it's someone that is not in her classroom and she doesn't seem to know, I've taken to asking her teacher if she could stay behind or do something else.  I may be wrong about this, but her teacher seems all too happy to oblige.  Audrey thereby avoids the petri dish of Pump My Stomach, and gets some sweet one-on-one time with her teacher.  Everybody wins. 

Except.  Yesterday was one of those parties.  Audrey did not go.  Audrey was up puking last night anyway.  If I'd have known she was incubating something, I would have sent her.  Instead of her picking something up, for once she could have left a little gift behind.

Monday, October 25, 2010

Part II. Autism, The World Series, and Me: An Anniversary

I have been a White Sox fan my entire life. I grew up at the old Comiskey Park. I turned 16 during the summer of 1979. It was the summer of the player-manager, Disco Demolition, and my name in lights on Diamond Vision. “Happy Sweet 16, Lynn” It doesn’t get any better than that. When the park was razed in 1991, some of those beautiful old green seats were sold as souvenirs, and I know that at least one of them had a permanent imprint of my butt on it.  My father’s company had sweet season tickets along the third base line right behind the home dugout. I loved everything about the game of baseball, but mostly I loved my team. I have followed them my entire life knowing that, since their last World Series win was in 1917, there was a pretty good chance that I would never live to see them win another one. All of that changed in 2005. After a tremendous season, they practically swept their way into the World Series that October.

October 22, 2005: Game 1 of the World Series in Chicago. Chicago White Sox vs. Houston Astros. Joe Crede hits a tie-breaking home run in the bottom of the 4th. Manager Ozzie Guillen famously gives the “fat guy” signal for Bobby Jenks to come in for the save in the 8th. It was a squeaker, but we are one game up. Woo hoo!

October 23, 2005: Game 2 of the World Series in Chicago. The Sox are down by two runs with two out in the bottom of the 7th. Paul Konerko comes up to bat with the bases loaded. It had been a long inning, and I wanted to get Audrey off to bed so that I could enjoy the rest of the game in peace. Like an idiot, I paused the TiVo just as Paulie steps into the batter’s box. As I’m trying to get her to sleep the phone starts ringing off the hook. I knew something big had happened. To the chants of “Pau-lie! Pau-lie!” Konerko rips it out of the park on the first pitch. GRAND SLAM!! The Astros came back and tied it in the 9th, but just a few minutes later Scott Podsednik, who hadn’t homered all season, hits a walk-off. I thought my head would explode from total euphoria. Oh. My. God. We are two games up in the World Series! The announcers start spouting the statistics about how few teams have come back from a two game deficit in the World Series. We are headed down to Houston with the Astros on the ropes. I can’t believe it! I’ve been waiting for this my entire life! The White Sox are going to win the World Series!! Can’t…breathe…can’t…speak…too…much…happiness...

October 24, 2005:  Audrey’s 18-month wellness check. The day that will live in infamy. The day the Earth stood still. You have got to be KIDDING ME. Of course, my overriding emotions were all of the typical ones associated with the grieving process: shock, denial, and excruciating pain and devastation, but I also had a little of the anger kicking in, perhaps more than Elizabeth Kubler-Ross would think normal on day 1 of the grieving process. But she most likely never sweated her butt off in 100-degree heat watching another grounder dribble through Don Kessinger’s legs, so she can suck it. I could not believe that I was not going to be allowed to enjoy my team finally winning the World Series. My anger was completely irrational, which only made me feel more guilty. Where was my perspective? What exactly were my priorities?

For the most part, I reacted normally, with all of the renewed perspective on life that one would expect. Of course, nothing in life is more important than the health and well-being of your child. There is no team, no sport, no championship that matters a whit in comparison. But here was where the bargaining phase started. I had always thought that bargaining was the stupidest of the grieving stages. Does anyone really believe that God is open to negotiations? “Please, God, don’t let me have cancer. I’ll go back to church. I’ll go every Sunday. I swear.” You know that you totally wouldn’t, and God knows it too. Besides, he’s much too busy making sure that Beyonce wins another BET award to listen to your bull.

I may have never thought that I would succumb to the bargaining phase, but the possibility of an impending World Series win would prove far too tempting.

“God, I know I’ve been praying for the White Sox for almost forty years, but I’d really much rather that my daughter didn’t have autism. If you could just make it so that she doesn’t have autism, I will never misplace my priorities ever again. I promise that I won’t ever again prop her up in front of a Baby Einstein video on the portable DVD player just so I can watch another meaningless sporting event.”

This made watching the final two games of the series quite confusing. Should I assume that God listened to me and root for them to lose? If they lost, did this mean that Audrey wasn’t autistic? If they won, did it mean that she for sure was autistic? Were my prayers really that potent? I became borderline obsessive-compulsive about it. “OK, if Iguchi turns this double play, then Audrey is totally not autistic.” In retrospect, I think I was having a small nervous breakdown.

Games 3 and 4 of that World Series were played the following two nights in Houston. On October 26, 2005, Paul Konerko caught a throw from Juan Uribe for the last out of the game, and my beloved Chicago White Sox had won the World Series. I have never cried so hard in my life. The celebrations began on the field and in Chicago. The players’ families came onto the field, and one of the players held a little girl. I looked over at my husband and he was sobbing. I’ve never known another circumstance where I was crying for so many different reasons at once. I was crying happy tears for my team. I was crying out of intense nostalgia for my youth, because at one time in my life this would have meant everything to me. I was crying from homesickness because I was 2,000 miles away from the party. I was crying because that player holding his daughter would never, ever understand how lucky he was. But mostly I was crying because my daughter had autism, and nothing would ever feel normal again.

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

Five years down the road, we've gotten somewhat used to this new normal.  But that doesn't keep me from looking back on that time and still mourning a little.  The best way to deal with such an anniversary is probably to forget about it.  Maybe someday I will, and it will be just another day on the calendar.

We have spent the last five years doing everything in our power to help Audrey.  And she has spent seemingly every minute of those five years working her ass off and withstanding everything we've thrown at her.  I couldn't even begin to enumerate all of the therapies and interventions that we've pursued.  Ironically enough, she is now the exact age at which that pediatrician said she would be caught up.  She is not.  But it is certainly not for lack of trying.

For Audrey, that October day was 75% of her life ago and means absolutely nothing to her. She was the same child on that day that she had been for the previous 18 months, and that she has been every day since: a beautiful, amazing, courageous little girl that is loved more than she will ever know.


Sunday, October 24, 2010

Autism, The World Series, and Me: An Anniversary

Today is the 5th anniversary of the day that I realized that Audrey had autism.  It wasn't the day that we received an official diagnosis, but the day that I knew.  To commemorate this auspicious occasion, I'm posting an excerpt from my never-gonna-be-published book.  Today is Part I, which tells the story of the ton of bricks that fell on my head on that day.  Coming tomorrow in Part II -- how autism crapped all over my World Series parade.


The only reaction this should
elicit is "What in the hell was
up with her hair?"  But instead
it reminds me of that day.
Monday, October 24, 2005 was a beautiful fall day in Northern California. I was stopped at an intersection not far from my house, when I had a sudden and certain realization. My daughter has autism. A light bulb went off as if I had just realized that I’d forgotten to take a pill, or send a birthday card, or turn off the oven. The fallout from this was likely to be slightly more life-altering than having a bout of heartburn, pissing off a friend, or even burning my house to the ground, but somehow the initial jolt was a similar sensation. Then came the after-shocks.

No, wait. That can’t be right. Can it? No. I don’t think so. But. Is she? Maybe. No, she is. I think she is. She definitely is. Absolutely. No way. You think? Wow. Really. Autism.  Everything had been fine just seconds before, and now nothing would ever be the same. Audrey was in the back, flipping through books in her car seat as she always did. Nothing had changed about her in those few seconds but suddenly my perception of her was completely different. She was no longer just a late bloomer or an introvert. She had autism, a neurological disorder from which she might never recover.

That morning, we’d had her 18-month doctor appointment. Not much had changed since her 15-month checkup. She still wasn’t crawling right, let alone walking. Nor was she talking or pointing or in any way trying to communicate. She couldn’t do where’s-your-nose or play peek-a-boo, didn’t answer to her name, and her eye contact was poor. There were some new developments, but they were uniformly disturbing. Her disposition had progressed from fussy to surly to exorcism-ready. She had lost all ability to play appropriately with her toys. And the latest trend was her becoming increasingly upset to the point of inconsolable when she heard the cries of another child.

The pediatrician never uttered the word autism at that appointment, and only made vague comments about developmental delays. She said that she had seen this sort of thing before, and that the children were usually caught up by the time that they were in first grade. First grade? I was incensed! She was only 18 months old and she was already making a judgment that she would be hopelessly behind until first grade?

After the checkup, we headed to Audrey’s weekly physical therapy appointment. We had started PT at 11 months. At the time, I thought that it was just a temporary thing. She just needed a little jump start to get her going. Karen was a great therapist, and Audrey had made a lot of progress over the 7 months that we had been seeing her. She had been commenting all along about how Audrey reminded her so much of another little boy that she had worked with. She brought Ben up frequently, and, when Audrey developed the new habit of repeatedly flinging toys over her shoulder, she again mentioned Ben and how he had done the same thing. They were so much alike, Ben and Audrey. I knew that Karen dealt with all kinds of different kids with a myriad of disabilities, and I had studiously avoided ever asking her what exactly was wrong with Ben. But on the day of that 18-month appointment, I related the story of what the pediatrician had said about Audrey falling behind and not catching up for five or six more years and awaited her horrified response. But she clearly did not get the script that I was telegraphing her. She wasn’t shocked and disgusted. In fact, she didn’t say much at all. A few minutes later, she brought up Ben again, and I finally blurted out, “So what exactly is the deal with Ben?” She said, “He’s autistic.” And just like that it began.

My number had come up. I was ordered to report for duty. I could not imagine the battles that lie ahead.

Friday, October 22, 2010

Full Moon Fever

Audrey is obsessed with the moon.  Especially full moons.  Did you know that tonight it will be a full moon?  Yes?  Did you know that it is the Hunter's Moon on the 2455492.568th Julian Day at a distance of 398141km and an azimuth of 99 degrees 41' and 28"?  No?  Loser.  You clearly have not bought yourself the MoonPhase iPhone app.

I thought that this app would be a great idea for Audrey.  I bought it last night as I stood out in the cold watching Audrey do her monthly moondance, wondering if the moon was really full and, if not, how many more nights I would have of standing out in the cold watching her do her moondance.  For $1.99 I learned that I would have one more night of it, in addition to all of the information above. 

Audrey was an especially surreal sight last night because she still had her tutu on from ballet class.  She whirled around repeating her usual insightful observations ("There's the moon!  There it is!"), as I read her more facts from the app.  Eventually I started making up my own just to entertain myself...about how the moon was waning Billy Gibbons and waxing Uranus.  I knew it was time to come in when Audrey sat down and started looking at the moon on the iPhone rather than the one in the sky.  #iPhoneappbackfire

Thursday, October 21, 2010

When Not Getting Pummeled at the Pumpkin Patch...

...we actually had a very nice time.  These are not costume changes in the pics below...she loves it so much that we went to the same pumpkin farm 3 times in a little over a week.
 
First taste of apple cider...when water is all you
drink, pretty much everything elicits this reaction.

Posed picture fail.  The pre-set background
was too tempting...will I never learn?
   
Frolicking unfettered to the corn maze
finish line...how you like me now, bullies!
   
Audrey's favorite feature that sets this particular pumpkin patch apart from all others...an open trough full of baby chicks that you can have at.  You've heard of the running of the bulls in Pamplona?  Check out the running of the chicks in Bolingbrook, IL...

 


 
Did you see the one being thrown back into the trough from like a foot high?  These chicks are so traumatized that they just run like hell from one end to the other trying to avoid the mitts of all the future serial killers that want to squeeze them til their eyes pop out.
 
Audrey was afraid to hold one at first...cuz, yeah, there is officially nothing that she is not terrified of if she is afraid of a baby chick. 

 
It will take at least until Valentine's Day for Audrey to process that the pumpkin farm is closed for the season, so we'll have to take advantage of the days that we have left.  10 more days until Halloween = at least 4 more trips to go!

Wednesday, October 20, 2010

The Perfect Classroom Placement: In Search of The Middle

Parents of autistic kids are always told that they should want their kids to be in the middle relative to the other students in their classroom placement.  For self-esteem reasons, you don't want them to be at the bottom.  And if they are at the top, then they are probably not being challenged.  But in reality, somebody's gotta be at the top and somebody's gotta be at the bottom, right?

If you're kid's at the bottom you're all:
I-need-a-new-placement-she's-in-over-her-head-she's-not-learning-anything-she's-completely-lost.

If you're kid's at the top of the heap then it's:
I-need-a-new-placement-she's-not-learning-anything-new-I-don't-care-if-she's-a-peer-model-for-the-other-kids-screw-them-it's-every-man-for-himself-see-ya-later-suckers-wait-Audrey-is-your-peer-model-you-are-so-screwed.

Even if you do find the perfect placement for your child, the complexion of the classroom is bound to change over time.  The kids progress at different rates.  Some of them move on, and others take their place.  Audrey's been in her current placement for a year.  She started out near the bottom, but, mostly through attrition, is now towards the top. 

So whenever I hear that a new child has joined their classroom, I'm anxious to find out if he is a potential peer model for Audrey.  But it's hard to ascertain this from asking Audrey, who is really only able to confirm his existence (which I learned from the daily note home), his name, and that he's nice and she likes him.  So I've taken to having my fellow classroom mom Aimee do some reconnaissance with her daughter, Audrey's BFF Grace Anne, who is able to provide more juicy details:

Aimee:  "Is there a new kid in your class?"
Grace Anne:  "Ryan."
Aimee:  "How many students are in your class now?"
Grace Anne:  "Seven."
Aimee:  "How many teachers are in your class now?"
Grace Anne:  "Eight."  (then she named six)
Aimee:  "Does Ryan speak well or is he still learning to speak?"
Grace Anne:  "He speaks well, just like (names another kid in the classroom whom I would not peg as the star talker)."
Aimee:  "What does he like?"
Grace Anne:  "Letters."
Aimee:  "What does he say?"
Grace Anne:  "He says 'Let's say the alphabet'."

Yeah, we don't need a peer model to teach us to be obsessed with the alphabet, Bud.  Unless you're talking about Arabic or Cyrillic, you are no good to me.  OK, OK...as much as I love Grace Anne, and as iron clad as this assessment seems, perhaps I shouldn't base my opinion on it alone.  What I won't do to avoid scheduling another classroom observation...

Tuesday, October 19, 2010

I'm Fierce

I must be a great host because 1) this virus of mine refuses to leave the decrepit vessel that is my body, and 2) I've been given a blogger award! 


This award is called the Fierce Mom Blogger Award, which the deserving Jillsmo at Yeah. Good Times. won herself and then graciously passed along to me.  Jill has quickly become a great bloggy friend.  She was supportive of me before I really even knew her.  She has given me two blogger awards, and has voted me onto her island of incredible friends.  Jill informed me that she had given me this award on Sunday night when I was between hurl sessions.  Her words were a sight for sore...everything.  Thanks so much, Jill.  You are the best.

Now I have to pass it along to someone else.  And I have to give it to my friend Dani G from I'm Just That Way and That's Just Me

I'm Just That Way and That's Just Me


Who else?  Especially when the word "fierce" is involved.  Dani is fierce in both the she-wolf-mama-bear sense of the word, and the little-elfin-dude-from-Project-Runway sense of the word.  She fights every day tooth and nail for her beautiful Little Bird, and freely cops to the terrific highs and lowdown lows of raising a child on the spectrum.  She blogs with honesty, humor, and more than a little poop talk...which I for one never get enough of.  I was lucky enough to comment after Dani one day on SITS daily roll call, and I've called myself a fan ever since.  I also call myself an in-real-life friend because I actually got to meet her in person, and we have each other's cell numbers which we can call and send desperate texts to night and day...like a Bat(Shit) Signal over our fucked-up little Gotham City.  Stay fierce, you hot tranny mess Dani G!

Monday, October 18, 2010

Blech. Erp. Hurl.

I am so sick right now that I don't think I'm going to make it to the end of this sentence without hurling.  Erp.  Whew, that was a dry one.  I can't remember ever feeling this bad, although I'm sure that I have.  I vaguely remember telling at least one of the imaginary people that I was hallucinating last night to shoot me in the head.  I had just finished watching the season finale of Mad Men so I think one of them was Don Draper.  Bastard has no morals but wouldn't do it.  

I'm just praying that Audrey doesn't catch this.  We are usually pretty good about staggering our illnesses, so I've never had to clean up her puke while puking myself.  But there's a first time for everything.  She doesn't understand so she keeps hanging all over me and loving me up as usual, and I'm trying to tell her that I don't want her to catch my flu...plus it really doesn't feel good to have her wrapped around my neck right now.

I have a weekly visual schedule for her, and in my stupor I'd forgotten to change it for this week so it still showed that she had Monday off.  After spending all day hoping and praying that Audrey didn't catch this so that she could go to school today, I had to talk her down from the ledge when she realized that today wasn't a holiday after all.  Audrey is the only person in the world that would actually choose to be with me today.

Saturday, October 16, 2010

But It's OK If I'm Bullying the Bully, Right?

There has been a lot in the news lately about bullying, after a rash of bullying-related suicides.  Audrey has yet to be bullied, but I live in fear of it.  It's something that I've always assumed that we will have to deal with someday.  I had to deal with it as a neurotypical kid, so why would I expect that she'd get off the hook?

When I was Audrey's age, I stood up to a boy 5 years my senior who was mercilessly making fun of my older sister.  His name was Kiki Pessetto and he had a glass eye.  My mother called him "Dead Eye" around the house, so when I called him out on the school bus I said, "You leave my sister alone you Dead Eye!"  Needless to say, I was the one who got in trouble with Rick the bus monitor.  Rick was such a pussy, and had I known that word at the time I'm sure that I would have used it.

The moral of that story is that the Italian half of me sometimes takes over with a vengeance.  Literally.  I have a lot of vengeance fantasies and they are usually not non-violent.  So not only do I live in fear and loathing of the day that anyone bullies Audrey, but really the whole of society should.  Not only was I raised around a bunch of crazy Italians, I also watched a lot of Sopranos.  So in my head I say things like "You go near my daughter again and I will unscrew your head and shit down your neck."  I got more too.  About what I'll do to their dog and their mother.  You get the idea.

But as with most things, reality never matches the fantasy.  Yeah, I'm a big talker.  Here's an example of what usually transpires:



OK, so this wasn't exactly a bullying personal attack on Audrey, but I was still pissed.  But I was too busy consoling Audrey to run down the little assholes to perform the aforementioned beheading and neck-defecation.  Audrey was so rattled that we had to leave the pumpkin farm immediately.  The back story is that she had had a nosebleed in the car on the way there.  These always freak her out, and she had just stopped obsessively checking her nose when they clocked her right on it.

In my defense, I had successfully tormented some other kids earlier in the day.  I love to torment kids.  I get this from my mother.  We were standing in line for one of those giant, blowup slides.  I have to wait in line with Audrey or else she will either cut to the head of the line or stand there and let everyone else cut in front of her.  One kid and his friend cut in front of us.  I called out the one kid and sent him packing, but the other kid wouldn't budge.

Me (as I'm constantly poking him in the back and head):  "Hey you cut don't cut no cuts why'd you cut go to the back get outta here no cuts go back and see your friend git scram..."
Kid:  "I didn't cut!"
Girl who works there as line tender: "Yeah, you did."

During this scene, I turn around to see an ASD kid that Audrey went to preschool with and his two parents.  I hadn't seen them in like a year, and they were laughing their heads off at me and giving me the thumbs up.  Yeah, we gotta stick up for each other in this Army.

Friday, October 15, 2010

Be My Guest. Have a Seat. Now Goodbye.

Today is guest blogger day within the (unfortunately-named) Spring Chicken tribe of special needs bloggers at the lovely SITS community.  I was asked to guest blog by the sassy Amanda Broadfoot at  Life is a Spectrum.  Amanda and I have joked in the past about her little ASD wonder-boy Billy marrying my Audrey when they grow up, and my post over there is about that very prospect.  So head on over and check it out!

In the meantime, back at the home front, I leave my blog in the capable hands of the awesome Tulpen from Bad Words.  In spite of the title, Tulpen's blog is much more than just profanity (although there is that).  She is hysterically funny and irreverent, but also a great and honest writer.  Her Random Thoughts are more interesting and worthwhile than most people's Deliberate Thoughts, and I like it when she gets warm, fuzzy, and nostalgic too.  So without further ado (even though I could ado all day), take it away Tulpen...

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

Ok. So I've known Lynn for what, a year now? Love her blog, her wit and snark, and of course the lovely Audrey.  When Lynn emailed me and invited me to guest post, she let me know that she didn't think anyone else would accept my potty mouth and offered up her blog to me, with full f-bomb privileges.

I accepted and fretted over what to write. Sometimes, I think I've said it all when it comes to raising an especially needy child. I scrolled through my old posts in my head, trying to find the one that best illustrates how I feel about this unique experience.

Lately, Owen has been having some trouble being Owen. School is getting more challenging. His friendships are changing. He is realizing that he is different. He is struggling and it makes me sad.

So I decided I would share a post that reminds me who he is. I wrote it for his sixth birthday. I wrote it to him but for me.

Sorry folks, no swears.  
 
                                                              --------------------- 
 
Owen,

I'm trying to remember who I was, a lifetime ago, before I was your Mommy. I'm sure I was just like every other Mommy in the history of Mommies, expecting their first babies. Expectant Mommies are just that, only that - expecting. Expecting beautiful healthy perfection, as if we are entitled to it.

From the moment you were born you did nothing that you were expected to do.

You survived your first day when no one thought you could.

When you finally started to get better, you then went and got sicker.

Too many times, I braced myself, expecting you to leave me, and you didn't.

So. I learned to stop expecting anything from you. And once you declared yourself as one who was going to live, it was all extra.

Every minute was, is, extra.

You've never hit a milestone on time, never nursed, never took a bottle, never crawled. You never did anything a normal baby is supposed to do; but every single day of your babyhood I'd look in awe at you and think, no, I'm pretty sure I said it to you;

"I can't believe you're alive."

All the things that a normal baby would be doing, things that you couldn't do were nothing.

I didn't push you to walk before you were able, to eat before you were ready, or to communicate beyond your means.

Everything you've ever been able to do is all extra.

I've endured dozens of assessments by dozens of professionals giving me advice on how to help you "catch up". Words that were meant to encourage; "Don't worry, he'll get there.", sounded silly to me.

I've never worried. It is all extra.

I've met many Mommies of many normal children who have looked at us with sympathy, even guilt for having a normal child. I've tried, but I doubt I've convinced any of them that being your Mommy is better than anything I could have expected.

They got what they expected.

I got extra.

Wednesday, October 13, 2010

Enter Sandman, Part III: Enter Already!

The first two nights were as I expected.  She had trouble falling asleep and we were up and down all night.  The last time I made her do the walk of shame was probably around 2 or 3:00am, and then eventually I passed out and woke up to her staring at me with a goony grin and asking me to assume the position.

By the third night, she had no trouble falling asleep, and then "accidentally" slept in her own bed the whole night just from sheer exhaustion.  I showered her with praise and let her play with Leapster for like 5 hours.  While I slept some more.

After that, it was a full week of alternating nights of up-all-night and coma sleep. 

Then she got a head cold and all bets were off.  Audrey is the biggest baby about head colds.  She literally slept better after breaking her arm and getting 20 stitches in her face from a dog bite.  God, she is such a miserable pain in the ass with a cold.  All night long it's "I need a tissue!" "I need Vicks" "My nose is locked!" "I'm siiiiiiiiiiiiiiiiiick!!!!"  So I caved and we were back to square 1.

After she recovered, we got back in the saddle and progressed basically as before.  Eventually, she bagged two nights in a row.  A couple of times she'd come barrelling into my room in the middle of the night, and I'd start my usual effort of dragging myself out of bed, only to see that she was just standing in the doorway and before I got up she had already turned around and brought herself back to bed.  Sweet!

Our biggest issue now is getting her to understand what is an acceptable time to come in and wake me up.  I can handle 6:00, but anything earlier is considered the middle of the night in my book.  We've had several pre-6:00 wake up calls, with the earliest being 4:45.  She comes in all woo-hoo, where's my Leapster?  I'm not sure how to get her to understand it.  I can't really say to wait until it's light because the sun's coming up pretty late these days and she's never slept until 7:00 in her life.  I can't go with a clock in her room because I'm afraid that she would get too obsessed with it.  I do have a clock radio on my nightstand that I think she looks at when she comes in, and is starting to get why some days she gets a parade thrown in her honor and some days she gets a slipper thrown at her head.

So we've made some good progress, but are still working out the kinks.  Today was a 5:30 wake up call.  I'm trying to tell myself that we are still getting better and more solid sleep even with the early rising, but I dunno...to me, 5:30 is 5:30 no matter how good you've slept during the night.  I tried to keep some perspective about my little problems as I watched miners 8 through 11 be rescued at the crack of dawn this morning.  I mean, c'mon.  They've been trapped 2,000 feet under the earth for 69 days in unbearable heat and claustrophobic conditions.  They had it much worse than me...right?  I wonder how they slept down there...

Tuesday, October 12, 2010

Enter Sandman, Part II: The ABA Plan

In the past, I've consulted with our ABA guru, Amy, about everything from haircut trauma to breaking an incessant hands-in-the-pants habit.  I'm talking about Audrey now, but I get where you could be confused.   

The game plan almost always consists of the same three basic elements:
1)  Social stories
2)  Reinforcement systems
3)  Video modeling

I've gotten fairly good at writing my own social stories, but there was a lot riding on the whole sleep situation so I left it to the pro.  My social story would have read something like "Stop trying to crawl back up my va-jay-jay and stay in your own damn bed."  Amy's was much nicer and consisted of the usual "I am awesome but nervous to sleep in my own bed and I like to sleep in Mom's bed but I'm a big girl now and Mom is right across the hall and I can handle it because I'm good enough, I'm smart enough, and doggone it, people like me!"

As for a reward system, coming up with new ones gets harder and harder.  We lean on reinforcers pretty heavily, so it's easy to blow through them quickly.   I have a locked cellar full of stim toys, photo albums, various bubble makers, scented markers, balloons, musical Christmas snow globes, a couple of stray cats, and Anthony from the Wiggles.  But eventually even the best reinforcers get old and lose their powers.  Sometimes if we're lucky we can cycle back through something that she hasn't seen in a while, which is what we did for our sleep project.  She hadn't seen her Leapster (video gaming) toy for a while, so I trotted it out for just long enough for her to realize that she still liked it and then snatched it away to use as her reward for sleeping in her bed through the night.

Video modeling usually reflects either desired behavior or the undesirable behavior being corrected.  In this case, Amy told me to make a movie of Audrey sleeping in her own bed and then show it to her afterwards.  We've used video modeling to great success in other situations.  This time, I think Audrey was just creeped out. 

The plan entails her falling asleep in her own bed with me staying upstairs with her until she does.  Then to the extent that I am awake when she tries to crawl into bed with me later in the night, I am to escort her back to her own bed.  Lather, rinse, repeat until morning.  The trick was a) waking up every time, b) hauling my tired lardy butt out of bed to bring her back to her own bed, and c) dealing with potential behaviors in the middle of the night.

Sorry to leave you hanging, but this post is getting too long.  Tomorrow:  The Results Show.

I've only woken up looking like this one time,
so I think it's going pretty well.

Monday, October 11, 2010

Enter Sandman: Our Sleep(less) Journey

Audrey is actually not the worst sleeper that I've ever heard of.  But in general, she doesn't bag much in the way of quantity and has her father and grandfather's early-bird gene.  Unlike her mother, who can't get enough of it and would sleep in every day if I could.  But like most mothers, typical or special, I can't.  Ever.

We've gone through so many different permutations of our sleep routine that I can't remember all of them.  I only really know the one that we're in right now.  It started in June when she took a bad fall at school.  After that, she refused to go to sleep in her own bed and started becoming even more clingy with me.  So I let her fall asleep in my bed and then when I went to bed I carried her back to her own bed.  Then somewhere between 5 minutes and 5 hours later, she would crawl back into bed with me.  There are many (read: all)nights when I am so dead to the world that I don't even know that she's there until I am awakened in the morning to her pulling up one of my eyelids with her finger.  At which point she proceeds with the following routine:

"Mama, lay down under the pillow."  She wants me to lay on my stomach with a pillow over the back of my head.  Then she crawls over from the opposite way that my head is pointing and does some weird shit where she's looking at my face from different angles.  I should first state, in case it's not obvious, that I am barely functioning and just letting her have her way with me

She pokes at my face, lifts up my eyelids, brushes my eyelashes with her finger, and moves my face from side to side. 

She repeatedly tells me "I like your new nightgown."  Even though by now it's not so new anymore and she has said this 10,000 times.

She says "Hi" 10,001 times because she loves to hear my moaning response "Mmmmmhmmmmm".

She digs her pointy little chin into my ear and shoulder blades.

And lately, a new variation, smacks me on the back (f-ing HARD) to the melody of "Jingle Bells", "This Old Man", and "Twinkle Twinkle", always in that order.

I have been completely helpless and unmotivated to break this routine.  But lately neither of us have been getting good sleep, and when Audrey's teacher told me that there were a few days when she could barely keep her eyes open in class, I knew that it was time to bring in the cavalry.  I spoke with my ABA consultant who is never less than thrilled to address such things.  In my next post, I'll fill you in on the plan and how it's going.  Zzzzzzzzzzzzzzzzzzz...

Saturday, October 9, 2010

A Visit to the Dentist: Death to Sugar Bugs

Today was Audrey's first trip back to the dentist since she had her first cavities filled 6 months ago.
It was just a check-up and cleaning, so much less stressful than the last appointment.  We're feeling like we've got it down to a science now, with the following being must-haves in order for us to have success:

1)  An aquarium in the waiting room
2)  Baby Mozart to watch during the appointment
3)  Chocolate toothpaste

Things that the dental hygienist/dentist think are helpful but are not:

1)  Wearing sunglasses.  They bug her more than the light in her eyes.  And they make for a different visual experience vis-a-vis Baby Mozart, which we cannot abide.
2)  Explaining every move that they make, and using cutesy euphemisms as in:  "We've got to get in there with the floss and get all the Sugar Bugs out", or calling the scary-as-hell suction thingy "Mr. Thirsty".  
3)  The rewards at the end, which include nothing that she cares about: stickers, a princess toothbrush, and picking a prize out of a bin filled with crap that doesn't play music or light up.



It's a wrap.  Now mama needs to go home and take care of Mrs. Thirsty.

Friday, October 8, 2010

You're Being Watched: A School Observation

Audrey attends a small, private school for autistic children, where parent observations are encouraged and not derided like when she was in public school.  Still, I'd been extremely remiss about scheduling one.  She's been at this school for a year and I'd never observed until just a couple of weeks ago.  I'd always rationalized that it would be a disaster...that she'd be too distracted by my presence for me to get a reasonable idea of how she typically behaved and that she'd pitch a fit when I left.  It could also be that I was just too lazy to schlep the 25 miles when I could be home trying to beat my high score on Farkle.

When I got there I was greeted by the ever-cheerful LuAnne, who immediately told me that she was a big fan of my blog.  Which immediately made her my new favorite person.  Hi LuAnne!  Next I ran into Audrey's BFF, Grace Anne, who informed me that she had drawn a picture of Audrey in her jungle book.  She was sporting her usual tank top and headband.  It was still early in the day, so the headband was on top of her head and not in the John McEnroe/Ralph Macchio position that her mom claims it slips to by the end of the day.  Sadly, it was a Cubs headband, so I snubbed her and moved on.

Once in the classroom, I was able to observe 3 "centers" -- reading, spelling, and a "what's wrong with the sentence" type of exercise that focused on punctuation and capital letters.  Audrey had her back to me...she snuck a few peeks at me, but stayed on task and was pretty great the whole time.  I was pleasantly surprised by her focus and participation.  Frankly, she was far more distracted by the girl sitting next to her who sounded like she was hacking up a lung or two.  At one point, Audrey helpfully suggested "She needs a tissue."

I wanted to take a few photos, and since the advent of the iPhone you can do so completely unobtrusively with no flash and the sound turned off.  But I had to take care because some of the children have a "no paparazzi" clause in their contract.   You know when you get those forms sent home asking if you give your permission for pictures or video to be taken of your child?  I always feel like if they have to ask that must mean that some parents object to it, so that must mean I'm a bad parent if I allow it.  But I do anyway.  As you can tell by this blog, I'm not shy about bandying about our names and personal 411.  Anything short of the exact GPS coordinates of Audrey's current location is fair game...and on a bad day I might even be sharing that.

Here is one of my sneaked photos:
Her neck is just too weak to bear the
weight of a 100-year curse.

So after this successful observation, I guess I have no excuse not to continue scheduling them with regularity.  Expect to see me sliding down the Farkle leader board.

Wednesday, October 6, 2010

Audrey, Unsupervised

So my last post covered the controversy in the UK of how some disabled adults were spending their welfare checks.  Here is what I imagine Audrey will be spending her money on when she is (God willing) living on her own and able to make her own decisions.  Hopefully there will be money.  From somewhere.  Either the government, or an actual job, or from the special needs trust that I set up for her when my book finally gets published and sets the world on fire.

  • Cheetos, Doritos, her own cotton candy machine, ice cream, Pie of the Month Club membership, milkshakes, pizzas, chocolate, brownies, cakes, caramel corn, french fries, potato chips, white bread a la mode, peanuts, and a high-fructose corn syrup IV drip.  To get her parents back for years of denial.


  • Robots.  Including a robot version of me for after I'm gone.  Robot-Me will handle all of the cooking, cleaning, and laundry, because I was too busy getting her to answer to her name to teach her those things.  She will be an uncanny version of me, and thus will occasionally cease to function and spend entire days in bed.


 
  • The home decor of her dreams:
Disco balls, waterfalls,
& fountains in every
room.
Plus automatic doors
& escalators instead of stairs.



  • Western shirts and bolo ties, if I am to go by the most famous adult with autism.


  • Pet care and maintenance due to her animal hoarding disorder.  


  • Whatever the latest generation technology will be at that time of computers, iPhones, video games, DVR's, DVD's etc.  Including the 25th, 50th, and 75th anniversary box set editions of the Baby Einstein catalog.  Cuz that shit is never gonna get old. 

Monday, October 4, 2010

Can a Disabled Brotha Get a Table Dance?

I'm on the distribution for Disability Scoop e-news, and this headline caught my eye:

In Britain, Taxpayer Funded Lap Dances For People With Disabilities


I read the synopsis and thought "Oh here we go".  Because it just sounded to me like the government had made a change whereby the disabled receive funds directly rather than having services supplied via the government or their authorized agencies.  So, yes, in theory this could happen but does it really?

So I searched for the original article in the London Telegraph, and it turns out it could.  And does.  Oh my.  Here are some excerpts from the article with my commentary in pink:

The £520 million scheme promised to give elderly people and those with disabilities more control over the care they received, by passing on cash so individuals could choose the services they needed.  An investigation by The Sunday Telegraph can disclose that exotic holidays, internet dating subscriptions and adventure breaks, as well as visits to sex workers and lap dancing clubs have been permitted under the system. 
 
This is the actual photo that accompanies the article.
Even I'd look better than that in a bikini,
but I'm strangely not comforted by this.
One local authority has agreed a care plan including payment for a 21-year-old with learning disabilities to have sex with a prostitute in Amsterdam next month.  (Yeah, I used to live there.  This explains all of the Brits left naked and tied to street lamps in the Red Light District.)  His social worker said social services were there to identify and meet the needs of their clients – which, in the case of an angry and frustrated young man (what???  I'd assumed that we were talking about disabled women all this time!  I'm shocked, shocked I tells ya!), meant paying for sex. Another care worker said staff at her council had been told that trips to lap dancing clubs could be funded, if it could be argued that it would help the "mental and physical well being" of their client.  (Man, guys have been getting away with this logic since the Stone Age.  "C'mon baby, help a brother out.  I can't focus on inventing tools unless you start with this obsidian arrowhead, if you know what I mean.  Don't make me use these new opposable thumbs on myself baby.")

In the course of 12 months, one man with mental health problems from Norwich received a holiday in Tunisia, a subscription to an internet dating site, driving lessons, and expensive art materials. (I used to date a guy who was from Norwich, and I actually visited there.  I think that I was the first American to pass through their airport because when the customs guy asked me what I was doing there I thought that he was asking the official "What is the nature of your trip:  business or pleasure?" but he was like "No, I meant what are you doing here?"  Hmmmm...Simon?  Is that you?  If so, I would not have been above accompanying him on holiday to Tunisia on the government's dime.  Hey, I would have been saving them on hookers.) 

Zoe Grace Cozens, who wrote the council's policy on learning disability and sexuality, said the authority also had a duty of care to ensure that those with learning disabilities were not being exploited financially, if they paid for prostitutes from their own money.  "That could mean care workers phoning to check what rate sex workers were charging," she added.  (Every government worker in England was just handed the perfect excuse if they ever get caught soliciting prostitutes.  "I'm just doing my job, checking on rates for my poor disabled clients.  In fact, I think I just saved us a bunch of money by negotiating a volume discount, and this is the thanks I get!")

Belinda Schwer, a legal consultant who advises councils, said many local authorities agreed support plans for clients which did not specify how funds would be used, once they passed out of their hands.  In the case of someone given funds to go to a sex worker, such documents might set out an intended emotional outcome, rather than the means by which it was achieved, she suggested. "If you have got a happy and calm person who was previously frustrated and angry, that might achieve a good outcome, but the case law says councils should be setting out which services are being used," she said.  (This sounds very much like IEP language where all of the recommended hours and services have to be justified as supporting a specific goal.  So let me see if I have this straight:  Frustrated, Angry Person + Sex with a Prostitute = Happy, Calm Person.  Yeah, I get that.  Just substitute "ABA therapy" for "Sex with prostitute" and that pretty much summarizes every IEP meeting I've ever had.)

Matthew Elliot, chief executive of The Taxpayers’ Alliance said it was “deeply worrying” that public money had been spent on the services of prostitutes, lapdancing clubs and to pay for holidays.  He said: “Many taxpayers will be appalled and offended that money intended for social care has been used in this way."  (Good God, they are such prudes over there.  This would never be an issue in the U.S.)

Coming Soon:  How I think Audrey would spend an adult stipend. Spoiler alert!  Not on sex workers.

Say Hello to My Little Friends

In the past week, the Versatile Blogger Award was bestowed upon me by no less than four bloggy buddies:  the positively gorgeous Autism Mom Rising  (No lie. Go check out her picture. Do it.), the probably-gorgeous-but-I've-never-seen-a-picture-of-her Tammy at Nurse Notes, the probably-gorgeous-is-not-the word-but-very-funny Big Daddy, and the clearly drunk Jillsmo at Yeah. Good Times.

I've previously written 7 things about myself and even about 1 thing that I am not, so instead of writing 7 more things, I thought that I would introduce you to 7 of my closest friends.


Seriously, thank you all for thinking of me and putting me in such good company with your blog and all of the others that were awarded!

Saturday, October 2, 2010

Top 10 Halloween Pet Peeves

OK, I know it's only October 2, but I figure that I'll have at least ten more by the end of the month.

10)  When the trickee-treatee holds out a basket for Audrey to choose a piece of candy.  I always forget to prime her for this option, so she stands there paralyzed with indecision and then starts feeling all of them up or taking one and then putting it back, at which point they start to realize that something is awry.  Just give her a goddamned piece of candy already.

9)  Doctors' offices and hospitals decorated with ghosts, skeletons, and human skulls.  Not cool.

8)  People who give out candy that I do not like. Did they not get my annual flyer?

7)  The fact that fully 1/2 of the Halloweens that Audrey's been alive for have been ruined by:  finding out that she had autism (2005), her getting mauled by a dog (2007), and her breaking her arm (2009).  This year she'll be swaddled in bubble wrap until November 1.

6)  That it's getting harder to wrestle Audrey to the ground for the Kit Kats.

5)  Saucy/naughty/trampy Halloween costumes for women.  Especially when they are based on honorable occupations or beloved children's characters.  Strawberry Slutcake?  Really?

4)  Entering Audrey in a costume contest and having her lose to some punk wearing a poster board with the Jack of Clubs drawn on it, when she looked like this:


I just wanted an excuse
to post this picture again

3)  People who sit outside on their stoops or porches at the end of a long driveway.  We can't pass up the house because they're sitting right there, and then we have to endure the long, awkward approach.  I'm smiling, I'm smiling, still smiling, too soon to start chit-chatting, they're smiling like loons, what do I say, are they going to talk first, is Audrey doing anything weird, oh thank God they're drunk...

2)  That I can't open a bag of candy without eating it all in one sitting.

...and the #1 Halloween Pet Peeve is:

1)  Parents of typical children (you didn't think I'd leave them out, did you?) who from the moment their toddler can scale a curb don't feel it necessary to escort them to the door anymore and stand back on the sidewalk knocking back cocktails from opaque plastic cups.  If I let my 6 year old child with autism do that, she'd be naked in their La-Z-Boy surfing their laptop before I reached the doorway.