Tales from the Darkside

I've been somewhat out of touch the past few days...cyber-speaking anyway. My wife and I got to do yet another excursion ALONE for the weekend, with yet another fun-filled autism related conference. First, to business...no children were lost, harmed or psychologically damaged this weekend...nor were the two people watching them. The parents nearly had a coronary when we had called and found that my brother-in-law was left in charge of the two girls and boys while grandma and our oldest daughter went to Shop-Rite. Lucky we called when we did..we walked Dillan through taking Liv to the potty. I got to listen to a great female version of Bob Newhart:
"OK, now slowly take down her pants, she might have poop...nonono, she probably doesn't, just in case. OK, good...now have her sit on the potty...don't let her flush again till she's done. Let's hope she doesn't poop...Nevermind what you'll have to do, just listen. OK, she peed, now give her some toilet tissue...I dunno, like 3 or 4 pieces...no all together...now give it to her...OK now she CAN flush the toilet."
Suffice it to say that we would have had Comedy Album of the Year had there been poop...
Meanwhile, mom and dad were at...the DAN! conference in Cherry Hill NJ. This was Linda's 3rd or 4th, it was my 1st conference.
I did not hear as much anti-vaccine rhetoric as I expected. I mean there was an undertone, but much of the venom was pointed at environmental factors in general. Then again, we did take the 'science' path and not the 'parents' path.
First, I found Dr Paul Shattock and his 'rock star'/comedian attitude a complete turn off. He may be one of DAN!'s best communicators, but I did not find anything valuable in his message. The two that most impressed me were Dr Derrick MacFabe and his talk on "Can Acquired Infections Influence Brain Function and Behavior in Autism" and Jill James and her work with the Arkansas Children's Hospital Research institute.
Dr MacFabe's research somewhat mirrors The Wakefield idea of Digestive bugs causing some behavioral issues. It's not really the concept that autism=gut issues, but more that he's taking the path that some autism issue amy be related to specific gut issues. It was his thought process and honesty that struck me...
Dr Jill James (WHY DO I ALWAYS WANT TO WRITE JILL ST JAMES..OR IS IT JILL ST JOHN FROM THAT 70'S MURDER MYSTERY) impressed me with her honesty with her data and how she needs and is seeking a more solid study, for some of her theories. I also liked her attitude about collaborating with the AAP about autism issues. not necessarily showing them how it's done but helping them understand some of the medical issues involved in the autism spectrum. I also liked the idea of the ATN Autism Treatment Network where they combine the experts in developmental pediatrics, neurology, genetics, metabolism and gastroenterology in 15 sites across the country to dedicate themselves to the standard of card of children of autism. To quote "The ATN believes that treatments of medical issues will improve core behaviors and quality of life for children and adults with autism"
I really had some problems with some of the disassociation DAN! has with the 'realities' of autism, there was not much mention of therapeutic or even acceptance of autism (and again, I didn't set foot in a parents forum) but I found at least some to many of the doctors presenting to be concerned with the real life of autism and definitely looking at the disorder as a fragmented and treatable from a MEDICAL standpoint but NOT as a medical condition, standpoint. I know that many see DAN! as a group that looks to profit from autism, but from my point of view, many in the organization are really looking at autism holistically, and not from a strictly medical, biomedical, therapeutic or genetic standpoint.

Can I Play Sykes Google Hit Too?

sykes sykes sykes sykes Oh how much fun! sykes sykes sykes sykes To be named in a subpoena! lawsuit lawsuit lawsuit I can annoy a LAWYER, what purpose could be higher! pharma conspiracy pharma conspiracy pharma conspiracy pharma conspiracy What could all those people named on that list possibly have to do with a frivolous lawsuit? Quack reverend Quack reverend Quack reverend Gee, I hope I make it on the NEXT Subpeona...

Fo those not up on this, someone has subpoena-ed an autism blogger because she had talked about a lawsuit on a pharmaceutical corporation by a private-typ person named Rev Lisa Sykes, who is suing these companies because she feels her child's autism was caused by vaccines...

Whether I agree or not, to drag someone's opinion in a blog into a lawsuit is just just just so...lawyer-like. so...Lisa lisa lisa get a grip get a grip get a grip

KIRBY DROPS OTHER SHOE TONIGHT ON LARRY KING

...And it ain't pretty. Hold on to your hats, this one's gonna be big, they just posted this on CNN

Autism Awareness Month - WhatdoIdo?

Autism Awareness Month is upon us and I have done NOTHING to prepare! It's the same with anniversaries and my wife's birthday, I always wait till the last minute for inspiration to strike...most times the only thing that strikes is my wife when she finds out I got her nothing for our anniversary or her b-day!

OK, my first stoopid thing I'll do...where an Autism Awareness shirt to work every day. I must have at least 10 of those, meaning I'll have to do laundry around the middle of the month. I might be able to do that.

Should I try and blog every day? Ambitious...I'll probably have steal half of Kristina Chew's posts to do that. I dunno.. might take up too much time, I'll try though.

Let's see, something else to do, about autism...something meaningful, Paint my car with puzzle pieces?...nah too much work. Protest at the state house in Trenton about the state of insurance coverage for autism therapies? Can't get a day off...that won't work. Allright, think hard...autism...helping autistics...who do I know who's...HEY, I GOT IT! Maybe I'll spend more floortime with my girls! Get the other rugrats to do the same! YEA! What better way to celebrate autism awareness month than to spend more time being aware of our autistics!

OK everyone, get to work raising YOUR awareness of that special someone in April. Hug or scratch or stim with or walk with or talk to or listen to or just be with that significant person or persons in your life who makes you care about the fact that that it's Autism Awareness month. OH yea? Well then, do it MORE!

Pavlov's Parents Subtitle:Can She Really Grow Up?

I started writing this a week or two ago and a news article caught my ear this morning about fish and inspired me to finish. It seems that they have taught sea bass to respond to a bell that was used whenever they were fed that is used to get them to 'net' themselves later in life when they are ready to be 'harvested'. Personally it sounds like a Twilight Zone episode to me (Nemo, wait! 'To Serve Bass', it's a COOKBOOK). Anyway, Pavlov has also been figuring in our household.

Susan Senator got me inadvertently thinking about a topic that is beginning to bubble to the surface at our house of late. She commented about being uncomfortable about being an authority figure. I subconsciously misread it and brought myself to realization that we (me and Linda) are uncomfortable about being athoriTATive towards the girls, particularly Livie. We have worked so hard for her to begin to put demands on us that we have almost forgotten what it is to put demands on her.

It probably started when we began the potty journey in November, sorry to disappoint, we're only training Liv for now; we realized if we did both at once we wouldn't have time to 'go' ourselves. We're really not putting the demand that SHE initiate it, we just set a timer and take her when the bell goes off, hoping that we don't initiate some kind of cruel comic Pavlovian irony. She will play the 'cripple' with us though, having us guide her to the bathroom and wait around, helping her with her clothes. We found out a month ago, she had been going into the bathroom at school on her own, when the bell would sound, and get herself reasonably together afterwards and come back out. "GREAT! I mean, WHAT?" was my wife's reaction. She's been playing us! Why work hard when the butler and maid are there? Same think at speech therapy, lots of word sounds, she's a hard worker when you push her a little. We just still have that 'china doll' mentality when it comes to our breakable little girl; ANY indication to what she wants and we give in.

I also thing she's got on some kind of Pavlov-ian leash as well. She will open and close the fridge, not necessarily to get juice or cupcakes; but to have a parent come a runnin'. Opening and closing a closet door or turning on and off a light switch are certainly a stim, but the added benefit is someone pays attention. She and we just have to train each other what the other really wants and how top properly get and give attention.

I think we're turning a corner now though. She's now putting on her own clothes, especially if she's taking them off. Again, she's doing it at school; but when she's home, she sticks her foot out for us to put on the sock. Now picking up toys she drops will be the norm. Kicking anything (or anyone), now dealt with: before---ignored; after---time out. Practically speaking, we don't have time to baby her anymore. Emotionally, it's at once melancholy to have her grow up and YEEE HAW... she's progressing.

ALL YOU CAN EAT $7.95...FREE SHOW...

Hey! Welcome to the show...I'm your host, Bill. I hope you enjoyed the buffet (ihopeyouavoidedtheshrimp). I'll be your entertainment for the evening. I'm new here, hoping everything will be to you liking here in ClubHub.

Hey, how many aspies do we have in the audience tonight, wave your hands? WOW! quite a few of you out there, I'm glad you got out here tonight...OK OK you can stop waving your hands...OH? OK, keep wavin' them...anything that makes you happy.

Parents with kids on the spectrum? Anyone? OK I see few with their heads on the tables, someone wake them up, I know it's past 9:00 folks but you spent the money you should try and say awake. I don't care how late your kids were up last night.

Lastly, any scientists out there? Yea, I know there are some who are both scientists AND aspies and EVEN parents...yea pal, I really don't know how I'm going to handle that bias in my analysis...jeez there's always a epidemiological heckler in the group, isn't there?

Well, I'd like to thank you for inviting me here, for those three people who read my blog who are not directly related to the spectrum, I've just hit the autism blog 'big time', they are now linking me on something called Autism Hub, really just a spot on the web with buncha links to blogs for people talking about and around and being in the autism spectrum. My family wouldn't get a lot of what's talked about there. But my Dad's probably here in the audience tonight in the back. Dad? Take a bow. Dad? Huh? No, Dad, I think he's OK, he just doesn't want you talking to him, no, the joke was probably real funny, you're just invading his space. He'll stop talking to you, sir. Yea, give my dad a little slack he's probably the only neurotypical in the room.

So, a little about myself, I'm old enough to remember dials on TV's. I've been married for...for...WTF! 20 years this year?! Wow, SHE deserves a medal! We have 5 humans under our charge, my two youngest are why I got into this whole autism world. I was going to say that my youngest two, I'm learning how to understand, then I realized...I don't understand ANY of them! They're 13 down to 3. I'm from the great state of NJ and NO, the environmental issues in NJ did not cause my children's autism. Well, maybe, I'm not 100% sure.

Which brings us to something I have to tell you's people in the Hub audience (I never was comfortable sayin' y'all, so I use the Soprano's vernacular instead). I have my daughters on biomedical interventions. HEY! Those veggies are for eating, the manager will make me clean the stage up if you start throwing them! I told them upfront that I had these leanings, I'm not one of those radicals if that's what your worried about. I freely admit the lack of scientific evidence that some of the things we do have. Uh oh, here comes the epidemiheckler again, yea yea buddy, we can debate AFTER the show and I'll probably lose... sir, do you chase nuns down the street to debate atheism? Right, lemme finish my set first, sir.

OK, to wrap up quick...love my kids...I'm gonna fight for my girls' rights...that is, if I can keep my sanity intact. We have a lot to talk and laugh about, lotta work to do. Otherwise, catch my show; I'll do one every week or so. Catch my DVD's for sale in the lobby. Take advantage of the free beer and wine (for those wine lovers... exnay on the ineway, it's vintage February), come back soon and don't forget to tip the staff...

Command Performance

My wife requested I write about my day and try to put my usual comic spin on it. Well, I'm still in the midst of it, so I'm not sure how it's going to come out, so here it goes.

First things first...standard bad morning. Grace has a fever and I heard her talking in her sleep around 4:30 am. I'm trying to drift back down again when our six inch wide cat decides to try and jump onto the three inch wide window sill...not once, but twice! Tigger has a heart condition so I don't throw her across the room like I do with a normal cat (kidding ASPCA). After hemming, hawing, holding down and minor scratching, she gives up. We do, however hear Grace again; Lin gets geared up to bring her into the living room, only to find it was a false alarm. 5:30 comes around and this time it's no drill, Linda takes her into the living room. I begin drifting off again when the other half of the girls bedroom wakes up at 6:00. I keep Liv in bed with me; Liv is none too happy about this and lets me know for the next 60 minutes until it's time to get up.

The rest of the morning goes pretty normal...1 hour commute is only 1.5 hours due to a car fire blocking the Parkway (not mine and an extra half hour is really not that bad). Get through the day, I get to leave early at 4 (yeaaa!) to go finish my root canal (boo!). Allot 1.5 hours to get there,it only takes 1 hour (booo!) dentist takes me early (yea!).

My current dentist is a woman, and it occurred to me what a perfect job for a woman who's a capital B witch: dictate to men what to do with their mouths and inflict LOTS of pain! Not that my dentist is like that. Truth be told she reminds me more of Dolores Umbrage from Harry Potter fame. Very frilly office, pink matching everything and a woman at the center inflicting pain. I guess I would feel the same way about anyone ripping at my lips sticking sharp objects into the roots of my teeth.

OK done with the med-evil pre dinner appetizer. Get home and get the main course. Grace is looking horrible with her fever on the couch; she gets up and comes onto my lap. AWWWW, she's laying her head down on me. EEEEEWWWW she's throwing up all over me. Circumstances have it that I get stuck with her on my lap for the next half hour until the Motrin takes effect and I get to get out of the days now wet stinky clothes.

I go out to get myself some Whoppers for dinner, I'm about to sit down to eat the when "Bill, can you eat in the bathroom?" Liv's in the tub and Linda's trying to get something else done. She must have seen the mixture of pathos and anger in my eyes, so she let me have the 6.5 minutes to eat them, then I get the easy job of watching an already clean Liv in the tub. Not so tonight as two grunts and I suddenly have a first class poopy emergency on my hands. Quick get her out of the tub, destroy any toys that came in contact with water and clean the (OMG, I forgot to clean the tub! I'll get that later).

I topped the evening off being reminded what day it is and searching with Jason and Dillan in the dark backyard with flashlights...for leprechauns. As luck would have it I'm obviously not Irish, for I caught no leprechauns nor breaks today.

Not to be Outdone (subtitle: Timing is Everything)

While Liv has shown some interaction, Grace must have been reading my blog and decided to try and outshine her big sister. Grace has some fantastic base skills: she's sight reading, she's speaking three languages (echoic behaviors, thanks Noggin), she's a whip with puzzles...but.

She had been very very obsessive compulsive lately. She'll want things done a certain way, say certain things from shows and DON'T interrupt or change it. She had been calling all people 'mommie' when requesting. Playing just this way requesting just that way...but.

The past two weeks she has mellowed somewhat. Not as much echoing; we've been working on mixing up the way we 'tell' her how to request (Daddy, can I please have a juice; Aly, please get me that toy) and she's more general. She's been the other half of the comedy team in the tub with Liv, they've been more comfortable with each other's presence and physical contact is not uncomfortable (maybe it's because it's starting to get crowded in the tub!). In short, she's been a different kid these past two weeks. Maybe it's the ABA kicking in, maybe its us switching her from Methyl B12 to Hydroxy B12; maybe maturation...dunno. We'd be completely happy with this, but.

We had hired a Board Certified Behavioral Analyst to go into her classroom to write a behavioral plan. We're eventually going to have her moved from a pre-school disabled program to an autistic-only Verbal Behavior classroom. She had been acting out in class almost from the day she started in September last year, we have somewhat confirmed fears that they were just letting her do whatever she wants in the classroom, and she had begun to regress over the past three to four months. The BCBA was going to get the teachers and the aids working to stop the slipping. So when she went last Friday, she was met with a child with half the outbursts she had the previous week. Ironic that you CAN sometimes get what you want, God never says anything about WHEN you want it!

So, we're somewhat cruising here...some of the tumblers are clicking. It's crazy as usual, but the unusuals are pleasant surprises. Saturday afternoon, I had these cloth 'clubhouses' , both Liv and Grace were playing independently. Liv decided to go into the kitchen, Grace wanted someone else in the house, so she came out calling 'Liv' (She has NEVER sought her out before) and she tried to drag her with her. Liv didn't reciprocate...but WOW, what a breakthrough!

The Ugly Green-Eyed Monster Rears Her Beautiful Head

We're dealing with some wonderful new behaviors with Livie lately. If I were a 'normal' parent (we could get into whether I'm 60% normal or even if I'm abby-normal with the 60% as well), I would probably be lamenting the advent of something that most dread. But Liv has begun to show JEALOUSY! We weren't sure a few days ago; Linda was singing the 'I Love You' Barney song with Grace on her lap. Liv was on the couch, covered her ears, got up and assaulted Linda (grabbed the side of Linda's face and gave her a dirty look). Linda was in shock trying to figure it out. A few minutes later, Aly and i were singing the song to Livie and got laughter, then her version of anger. So we had sort of a mystery on our hands.

Linda figured it out a few days later...Liv actually HATES the Barney 'I Love You' song . She tried singing it to Liv and got a very negative reaction. But we have found other songs (namely the Peanut Butter song and others)she absolutely loves, and her therapists have been commenting that music is pretty high on her wants list. Linda has also had two more occasions where she has gotten negative reactions to flagrant signs of affection to the 'other party'.

So there we have it...two outward expressions of emotion: Jealousy and HATRED! The therapists have also been noting in her Saturday class that whenever they are doing what Livie wants; she's happy and compliant. But when it's Gracie's turn to choose, the hands go to the ears and she becomes quite ornery.

It's always been hard for me; when we first found out we were having Grace we thought that these two would be like peas in a pod, that they would be extremely close. Autism makes it seem like they barely acknowledge each others existence. It is thrilling, to say the least, that they are at least reacting to each others presence and realize that one is doing something the other wants or is causing things to not go the way they want. Wait till they have their first fist fight, Linda and I will be having tears of JOY!

Break in the Action

Sorry, haven't posted in a while, not for lack of material, just lack of a cohesive subject or passion to write it down in a personal post. Anyway, here are just a few of the issues going on:

We recently went to Pittsburg to attend a workshop on apraxia and autism. Fantastic speakers, Tamara Kasper and Nancy Kaufman. They were awe inspiring in their techniques using Verbal Behavior ABA for Speech issues in apraxia and particularly autistics with apraxia. It's fascinating how they broke down what sounds are easy to make (M, B, T, P, D and short vowels A and E) and how to simplify more complex sounds into word approximations that these kids can make until they can work their way up to the full word.
The lightbulb moment for Speech Language Pathologist is that they can use this autism Verbal Behavior approach to pair with reinforcement (Using things they reaally like to get children to use sound to communitate) to help kids learn and want to communicate verbally.
These women are cutting edge in their approach and they are seeing some great results and smaller studies are backing their findings. Tamara is only one of of a few doen in the country who are Board Certified Behavioral Analysts AND SLP's. It seems like a natural match made in heaven to me, but hey, I'm biased. Anyway, HERE is the organization that put on the conference. We had a great time by the way...first time in 7 YEARS we'd been away from the kids! I didn't call her 'mom' once!

Grace got out twice more while we were away. Much less serious since she was going out the door when someone was already out there. We're getting better at listening for the jingle bells (we still have a candy cane made of jingle bells on the door) and we rarely forget to lock the door. I just have to get to Home Depot to get the chain or the deadbolt, because it's only a matter of time before she learns, adapts and escapes again.

Our neighbors dog got out the other day and went after the kids in the backyard. Linda went off on the woman, since this dog has already bitten both Aly and Grace on separate occasions. The woman swore she was going to get rid of the dog a year ago when she bit Grace, then reniged and wound up putting up one of those doggie electronic fences. It would help if she kept the collar on him 24/7. I'm really a dog lover but this one's days are numbered...


Misc:

NJ is in committee as we speak for more autism legislation including one to require insurance to cover ABA therapies. Hope we can get that one through.
Fighting to get Grace into the autistic program with Liv...by Sept definitely, but we hope it's earlier because her teacher has pretty much stopped caring about her behaviors.
Laundry, taxes, dishes, snow, car repairs...just basic life otherwise...

The Great Escape

We have finally experienced something that many parents of autistic kids deal with on an almost daily basis...a child getting out of the house. Grace decided that her little universe was not big enough and decided to venture outside.

To give you the lay of the land, we have a bi-level (I think). You know, front door landing and stairs going up and stairs going down. We have a gate at the top of the stairs that's been through the wars. It's missing the last bar and a few months ago, it lost the 'push button' that made it impossible for anyone without a Phd to open it. Now it's easy to open but Grace and Liv had not made any pretenses to open it, until a few weeks ago, when Grace began opening the gate and going downstairs.

Well a couple of times open the gate and us saying "stop that" is one thing...today was different. Aly and Lin were in the other room, Aly came out to talk with the boys, called them but they did not answer. She went down the stairs, not noticing the open gate and passed and shut the front door.

"Mom, they're not here."
"What do you mean they're not here? Wait, they're outside, I can see them through the glass."
Aly opened the door to find it was indeed Grace, playing on the front lawn in the rain.

"GRACE IS OUTSIDE!!" started the panic. Aly went down the stairs wavering "GRRAAACE!" in her bare feet. With that, Grace decided to bolt into the cul-de-sac (I am SOOO glad we chose a cul-de-sac house!). She got 3/4 of the way across the street before Aly caught up. THUNKA THUNKA THUNKA...no harm, no injuries, no foul. Just an adrenaline rush on both chasers and a couple years of of Linda's life.

I get the much more mundane call at work. It's always good to hear, "Guess what? Now, she's perfectly alright... but guess what Gracie did?" Kinda like watching the horror movie for the second time. It's still scary, but the 'jump outs' just don't have the same effect.

So, we are weighing our options: basic chain lock, simple audio alarm, high deadbolt or more extreme measures like alarm companies and wrist bands. So, if you are one of those with 'runners' in your autistic household, I understand the digitalis and white hair now; please be kind to us as we join this most undesirable club...

The Dell

I get a lot of flack from the household about being addicted to the internet. Between being on 'the boards' discussing autism issues, just looking at the news and blogging, I do spend an inordinate amount of time surfing. But my wife and kids have taken it to another level, identifying an entity for which I am enamored to...the 'Dell'.
My Dell is not really mine, but my work computer. But it sits open and running on the dining room table, 3 hours a day during the week and probably 16 hours on weekends. I relate with what Homer Simpson once said of TV the same thing I feel for the internet: "Television: teacher, mother... secret lover! ...". My computer is in competition for time and, to a certain extent, affection with my wife and kids. I have no qualms about admitting it, it's good to admit you have an addiction.
My wife and her mother describe it as my 'pacifier'. Jason has seen an opening in my attentions towards Linda and is making his moves on my wife. They love to ask me the question "If you were stuck on a desert island, would you rather have your wife or your Dell with you. My answer is obvious: the Dell, because then I could contact someone to get OFF the island! So many permutations have been gone through on this, finally my son pointed out that the battery would go dead (No mention of the lack of a wireless router or even electricity!).
We've had several near misses with the Dell getting fried. Grace and Liv have made 'purposeful' spills very close to it; it's in a dangerous spot to begin with. Liquid spills are a fact of life at the dinner table. Also, Grace has a fascination with pushing that button until the power goes off, maybe she's trying to tell me something.
The Dell's getting old, not the age...the mileage. It's missing the F9 key, thanks to Lickie; it's missing 3 of it's 4 rubber 'legs' underneath; the 'A' on the A key is rubbed off. It currently does NOT like to dock at work, and it runs as slow as molasses runnin uphill in the winter. I suppose that I need to trade it in, we're upgrading to a new model at work this year. I can easily part with it despite my family's worries; after all, it's not the machine, it's what it does...

Jersey Giants!

TO ALL THE GIANTS, INCREDIBLE WIN, CONGRATULATIONS!!!!!!

Work/Life Balance

The profession I am in affords me the opportunity to work remotely, I can simply log into our company's computer system and work like I am at the office. Instant messaging, emails and all the other ways of communicating make it easy and convenient, especially since I live between an hour to 3 1/2 hours from the office, depending on the mood of the Parkway gods. I do miss all the interruptions at work, but compared to the maelstrom at home at times, it is quiet. I often say after a long weekend at home, that I am going to work to get some vacation time.
It's a very strange work environs being at home and being 'available' for all the minor crisees that occur...all the triumphs and tribulations that are usually conveyed when I get home or are washed out of Linda's memory by the rest of the day are transmitted instantly to my ears.
This week was particularly fun. I was working at home Monday and Tuesday and we had a crisis at work, and, as usual, we had issues at home too. Kids out sick, going to doctors appointments, therapies, ants in the house, diaper disasters everything seemed to converge over these 48 hours that I was home at working. At one point, I had 6 different IM conversations going on with work, 3 kids conversing with me or dragging me to various requests and a wife trying to find balance in the madness, reshuffling appointments and children like cards in a deck.
I really do know my priorities when it comes to 'work/life balance'. Life comes first and work will fit in when it can. I'm fortunate to work for a company that recognizes that. The problem occurs when the two are in such close proximity. Monday I stopped working to take Liv to OT at 4:30...right when I was trying to write a critical email. I tried to take the laptop with me and finish it off in the car while waiting, but alas, it is hit and miss hacking into someone else's wireless network. Tuesday was even more fun. Linda had a commitment at 4:30, so I literally keypunched until the very last minute and switched from work to daddy mode faster than you can change a diaper...and I did. I usually have a full hour to decompress in the car, and the experience was somewhat disorienting. It was the first time I went from a bad day at work straight into a hectic day at home.
So now, back at work and relaxed, I can look back and understand why it is tough for me to work at home; and how absolutely IMPOSSIBLE it must be to be a single mom trying to work from home...or even forget about home at work. It is definitely and advantage to be able to work from home at time, but until someone builds me an office suite addition at home (with soundproofing and a big strong lock) I'd much rather work at work and live at home.

Nexium Tie

If you follow my ranting on various autism message boards you'll know that I am no big fan of pharmaceutical companies. I am not under the impression that they have poisoned our children with thimeresol, causing an 'autism epidemic' mind you. I just don't like the barriers that they can erect to protect their market share. I also don't like the billions they spend on advertising to 'pull' their products through the marketplace advertising to consumers. But most egregious in my mind is their sales and marketing departments. Doctors and nurses will be wined and dined in the hopes that the latest drug will be favored over the competitors. Also, from pens to scratch pads to mints to everything imaginable, they will imprint the brand names of anti psychotics, male enhancements, cholesterol reducing and any other cure for malady known to man, again all in the hopes that when they are writing with, writing on or eating the promos, they will think of dishing out that drug to the next patient. I thought I had seen it all until today...

Someone I know has a relative in the pharma-sales business. I don't hold it against her, but I promised to have a heated debate next time I see this person's relative. It would be interesting to see how they are trained to deal with my ilk, but I digress. She walked over to me and handed me THE MOST DISGUSTING tie I had ever seen. As she explained, the purple tie with a white design was actually the logo for Nexium, the heartburn medication. All I could do was see in my mind's eye a supervisor of this sales guy saying "Yes, you HAVE to wear this on all your sales calls next month, to put in in the eye of the consumer." Or worse yet, a convention of sales reps all with the same hideous tie, all getting stares from the wait staff at the hotel they were at!

I can't imagine the reasoning within their marketing staff for this tie promo item. Were they trying to capture the wacky-quirky-don't-care-what-anyone-thinks doctors market? Any way you look at it, this and many other baubles that these companies give out will do nothing for the public perception that these things they sell are nothing more than Bold detergent or Hershey bars. Could they not do better by taking this promo money and fund a cancer walk a thon or put their name on the side of a children's hospital?

Anyway, sorry to digress from my normal autism/general family issues...I just had to share...

Norm Crosby would be proud of us...

You old time folks would remember Norm Crosby, the king of making up words out of the blue. I realized that our household has quite a few that are part of legend and current normal usage:

Perfinity (adj)- a level of cleanliness of a room that invokes scowls from the children. Combination of perfect and infinity. Originator,: Dillan


Hum a dum(v)- Used only once after a 3 year old Jason threw up in the hallway. When my wife stepped in it she was audibly grossed out. After thing settled down a bit, Jason asked
"Mom, why did you hum a dum in my throw-up?"
"Hum a dum," she puzzled, "what's that?"
"You know,' he said matter of factly, looking to the ceiling walking and seeming oblivious to anything, "huuumm a dummm a dummm"


Wub(n)- a certain part of the male anatomy that is not a penis. Originator: Jason


Doooogie Dooogie(?)- definition unknown. Originator: Olivia


Cows give us Miiiiilk (phrase)- "I don't want to go to bed". Originator: Grace


Ginormous (adj)- We swear Aly made this one up years ago, but it's in the dictionary...


Sticky Way(n)- Proper noun for geographic location of the 20X30' pile of dead trees, branches and bushes in our backyard. Definition clarified by the recent addition of pulled out brambles AKA sticker bushes.


Box Everest(n)- Another geographic location in our garage that consists of our 'mountain' of cardboard recycles. Originator: in dispute between Jason and Dillan


Nipnips(n)- generic term for prepubescent nipples (male or female) Originator: Linda & Aly


Rick, Big Carl, I Didn't (n's)- proper nouns for various body parts on various children. Please note 'Big Carl' is a body part located ABOVE the waist.


Tikaticktika (?)- term used for various happy situations, possibly tickle and well. Originator: Olivia


Goodbye Grace (phrase)- term used to say "leave me alone" Originator: Grace


Pooted (v)- term for flatulance. Origin in dispute: could have come from cartoon 'Foster's Home for Imaginary Freinds'


Guacamommie(n)- term used for dip made with avacado, tomatos, salt and garlic. Originator: Grace





I have to decide whether to append this post or make up yearly addendums the way Webster does...stay tuned

2008...The Year of Sleep Deprivation

If you have read some of my previous posts, you know that sleep rates pretty high on that 'hierarchy of needs' scale for me and my wife. Not quite as high up as say breathing or even eating, but I'd say it rates in the top 5 or 10. So, even the loss of a petty 90 minutes of extra sleep during the week can be downright mood and schedule altering.

So far Liv has had this perfect 4:30 alarm clock every morning this year. Depending on who's REM-ing at the time, the other leaps up to get Liv before she starts yelling, banging on the door, or turning on the lights to wake her much more sound sleeping sister in the same room. We have a prescription drug called Clonidine that we use in the event that Liv gets up in the middle of the night and we need to calm her back down. Unfortunately 4:30 is early morning, not middle of the night, if we give it to her after say 3:30, we have an immovable object when we try to get her up at 7. So into the bed she comes with us, and so far, she's only gotten back to sleep once.

Today, we threw a mind altering curve into this mix. Again, she was up at 4:30, settle her into our bed, then just after 5, over the monitor we hear BEEP BEEEP BEEP BEEP. Me being the more alert of the two go running into the room. They have a Dora alarm clock, which has NEVER been used as an alarm. I pick it up and begin randomly moving levers and pushing buttons. "Hi, I'm Dora, it's time to wake up." the voice mocks me. After hitting that button twice, I get the hint. Hit another button, the sleep radio goes on. Dazed, semi-conscious I think of the options. Throw out window... no too cold out. Smash against wall... no I'm not good at spackling. Just then, Supermom comes busting in and evaluates the situation; in a fraction of a yawn, she yanks at the cord out from behind the dresser until the plug finally comes out of the wall. My hero! Except, still the BEEEP BEEP goes on. Under the bed we find the portable single AA battery operated clock, that appears to use air horn technology. Staring at the ultimate victory, I begin to turn over the clock to turn the alarm off and....it...stops. Kinda like being stuck in an hour long traffic jam and not even getting to SEE the accident, I didn't even get a chance to silence my oppressor, all this occurred within the minute that the alarm eventually turns off.

Through it all, Grace does not budge. We wander out of the room like fireman after a midnight false alarm. Back into our bedroom where Livie is now sure it is time to get up, and we collapse. Insane cackling is ringing inside my head along with the echo of the beeep beep in my head. Luckily, we brought the little portable alarm clock in with us to our bedroom because inexplicably, 20 minutes later.. BEEEP BEEP Beep. Haha, hehe hee hoho! I do not achieve sleep again until some 30 seconds before my REAL alarm goes off at 6:00 AM.

How do you call in sick from life?

A New Years Wish for all Those Parents with Kids on the Spectrum

May all your breakthroughs be in the therapy rooms and not out of the diapers...
May all their tantrums be at home and at times when you can devote your full attention to them...
May you have many more restful nights than sleepless nights...
May your IEP's all go AOK...
May the therapies you have chosen be the ones they need most...
May the insurance companies say, "aw heck, give em 120 instead of 60 visits"...
May all your relationships whether the storm...
May your families stick with you the way mine have...
May your friends understand 1/10th of what you're going through...
May your school system find the time, the place and the money...
May your state and federal governments give a damn...
May your love far outweigh the need for patience...
May you find time....
May you find peace...

God bless and God Help Us in 2008!!!!!!
BLAJDOG

The 12 days BEFORE Christmas

I won't parody the song, but I'd like to go over the madness that occurs in our house to pull of that magical children's carnage known as Christmas. I have my Nightmare Before Christmas sweatshirt that I try to wear at least twice in December...because at least twice that many days in December...are.

Crawling through the attic on hands and knees, I actually asked for carpenters kneepads for next year. Three pieces of the artificial tree, two boxes of lights, two boxes of decorations and a whole buncha outdoor stuff that I REFUSED to set up this year. We had a security guard watching the attic stairs so no wandering eyes should appear (because guess what ELSE is lurking up there for Xmas?) or to prevent the daredevil Grace deciding to jump from the third or forth step.
Finding the time, location and privacy to accomplish the 'covering of the festival centerpieces' is also a challenge. Note that because of the belief of certain rotund annual nocturnal aviators, we must converse in the most erudite fashion possible. Note that those with younger children who try this... be warned, it's like speaking pig-latin, they catch on... our oldest now has quite a vocabulary! Anyway, we have it down to two sessions now, one when they were all in school and, hopefully Xmas Eve day when I take the two most aware and believing of the 5...so I have to find a place for Jason and Liv to go while Aly watches Grace and Lin uses her skills to finish the job.
Linda has this THING about keeping it financially even between the five somewhat. She even makes attempts at quantity and godhelpus, VOLUME. Think video games and you'll know why the cubic foot parity is an impossibility.
The culmination, the crescendo of this gift symphony is Xmas Eve. OK first, lets get the DYFS (NJ Child Abuse admin for those out of state) business out of the way...we DO drug our children on Christmas Eve. Double dose of melatonin or some Benedryl and they ain't even gonna remember the sugar plums dancing in their heads! In our defense, they are soooo hopped up on adrenaline that this just helps them to fall asleep before 2 am.

And now a holiday treat...A Visit From Saint Amabilis (who I found is the patron saint to prevent mental illness!)

Twas the night before Xmas and all round the house,
Lin and I are both lurking as quiet as a mouse.
The stockings and tree are in an inopportune spot,
we go from attic to basement hoping not to get caught.
Imagine 10 gifts times 5, you get the impression,
but to live the whole evening is beyond comprehension.
Since the path to the tree goes right past the boys room,
to pass them 99 times would surely spell doom
So 'round about the house the pair of us trek
From attic, to bedroom, out front door to back deck
The parcels are piled out by sliding doors of glass
And now comes the greatest pain in the neck
The door must be opened and the parcels on the ground,
must magically go under the tree sans a sound.
So here are the pair of us like burglars under cover
Waiting for a child to wake up and discover
But so far in 12 years we have ne'er been caught
In truth now 40% of our kids' silence has been bought.
We'll get through the presents, on to the stockings with care
Which'll be so laden, they'll not hang, they'll just lay there
Once we are done, complete and in bed,
we don't feel like parents, but two kids instead.
Because once again and for just two mortals mear,
We've pulled off the magic for yet one more year.
And you'll hear me exclaim as I turn out the light,
Merry Christmas to all, let them sleep through the night!

NEXT: The Biblical Christmas Wrapping Paper Flood...

TIS THE SEASON TO JUST LOSE IT

OK, I got approval to tell this story from my mom in law...God bless her....

She was having a rough time of it today. She was shopping today, which was a bad move to begin with. She was looking for a rake and first went to Kmart. She got past the obligatory Santa collecting for the Salvation Army, fought through the throngs and came up empty handed, rakes had been moved out to make room for more Xmas decorations. Fought her way back out of the store and bought something just to justify the trip. She got hit at the register for a donation to something. She then headed to Home Depot. She went past another Xmas collection agent at the door and got her rake; checkout again asked for a donation. Next on to a cosmetics store Harmons, you guessed it, another bell ringer at the door.

Finally, she had to go to the local supermarket, Pathmark to pick up a few things. Enter our poor hapless victim: a teenager with a Santa hat. "Hi, would you like to donate for terminally ill children?" In a scene that would have made Scrooge shake his head she said:

"No, I don't want to donate to terminally ill children, I'd rather donate to my daughter's two autistic children! Celebrities will help out those kids that are dying...NOBODY's helping the autistic kids!"

Poor girl will probably be psychologically scarred for life; she stammered as my mother in law went by. At least she now has an indelible story to tell in her old age. My MIL, shaken with guilt, needed 45 minutes on the phone to be talked down from the "spirit...is this the future that WILL be?" eternal damnation ledge. Please have pity, she's under a lot of stress...

Feeding an Army

I had another one of those 'Woody' moments today. Remember the movie Toy Story near the end when Woody and Buzz were trying to get on the moving van, their RC car ran out of batteries, then they realized the rocket was still on Buzz's back. Woody lights the rocket, then says "I just lit a rocket....rockets EXPLODE!"

I'm about 4 years after completely lighting the rocket, but making dinner today and grabbing a package with 7 huge pork chops, (probably the largest package in the supermarket without a 'party size' sticker), I realized that this was just barely enough to feed the family. Since both girls are on a gluten free casein free diet, we rarely all eat the same things. It's usually two separate meals: one for the 'large' family, the other the special diet for the two. Having two on the GF/CF diet does lend itself to some economies of scale; I really feel for many who only have one on the diet...the waste of some of these very expensive products is not advisable. Case and point for the aforementioned chops...shake and bake for the 'family', say 2.99, that covers 5 people for 2 meals. GF/CF coating...3.69...designed for one meal maybe 5 chops. So we split it to get the most, so it's only twice as expensive instead of 4X.

The realization also had hit me that these kids are growing, up...I'm just growing horizontally at this point. We went through an entire package of hot dogs at lunch today and Linda didn't even indulge in them. Two boys will inevitably turn 13 and begin devouring more and more of our house; Aly already eats like an adult; Grace and Liv will eventually grow out of toddler and kid size portions in the next 2-3 years. I just realized, I have to get my Costco membership renewed...

Even on the most mundane of shopping trips, Linda clears a cart easily; if she's on a roll; Aly goes with her and they are inventing new ways to cram and push two carts. Pretty soon, we're going to have to employ one of the boys to push the 'bulky cart'.

So next time you are stuck in line at the supermarket behind 'those people with three carts' think of us and be patient, you'll probably be enjoying your dessert before these people will even have their car unpacked!

GOPS

We have been watching the Ghost Hunters marathon on Sci Fi with our older child (Jason has been banned from even listening because of his ease of fright). If you are unfamiliar with this reality show (in my mind this actually qualifies as a reality show since there are no 'contestants' per se although they did something to get a new investigator), these two plumbers founded a paranormal investigation team called The Atlantic Paranormal Society (TAPS). They go to places where people claim there are hauntings and set up electronic equipment to find evidence. They go in from a perspective of skepticism, so, more often than not, they come up debunking the haunting or coming up empty handed. They do however get some pretty interesting footage, sounds and experiences.

Anyway, Grant and Jason, the two principals on the show, probably can't help us with our nocturnal issues, which is why Linda and I are forming our own investigative group: GOPS or the Grace Olivia Paranormal Society. Dedicated to discovering the reasons for why these two 'entities' go bump in the night and wind up haunting our room, we'll use anything in our powers for a good night's sleep. The past two nights have been a haze of movement of one coming into the room early in the night (1:00 AM) with the other waking at around (4:30-5).

Last night, Grace was clearly coming off of some bacterial thing she had for Thanksgiving, she had a 102 fever and was somewhat uncomfortable, so just as Linda was going to bed, she brought her in and set her up on the Dora futon next to the bed. She was a poltergeist for the next 2 1/2 hours however, moving from her futon across the room, making all sorts of disembeddied sounds, till finally settling at around 3-3:30. I heard the other spirit around 4 AM, but chose to attempt to ignore it. But 4:30 came with a more determined to be heard ghost, as she began kicking the closet door. Rather than risk a full blown haunting with wails and screams, we made a snap decision to bring her into our bed and risk disturbing the other apparition. The elder spirit would not be quelled however, probably due to a gluten infraction at Thanksgiving last night (she got hold of and ate leftover pie crust and was pointing my massages in bed to her belly to help her get rid of gas). So here I am, tired but inspired with this mixture of hauntings in my head from the Ghost Hunters series and haunting of my sleep by these two determined entities bent on keeping us from a reality-based existence through insomnia.

Prodigal Son

While this is no cause to kill the fatted calf and celebrate, it could potentially hold a key to binding a gaping wound in the autistic community and more importantly, help an autistic get out of a private hell;
http://hatingautism.blogspot.com/2007/11/how-do-you-stop-autistic-self-biting.html

My audience is limited, but for the sake of an autistic person, if you are on the ND side, throw aside the personal grudges and lets see if we can help...

When he came to his senses, he said, 'How many of my father's hired men have food to spare, and here I am starving to death! I will set out and go back to my father and say to him: Father, I have sinned against heaven and against you. I am no longer worthy to be called your son; make me like one of your hired men.' So he got up and went to his father."But while he was still a long way off, his father saw him and was filled with compassion for him; he ran to his son, threw his arms around him and kissed him.

Middle-Age Wasteland

Well, I guess Pete Townsend had a musical point about hoping to die before you get old. That is, from a musical standpoint when you have kids. When I first became a parent, I remember walking up the stairs at work humming a Barney tune...THAT was the beginning of the end folks. My television AND music today are not totally not my own. It's pathetic when you actually ENJOY Jack's Big Music Show when Laurie Berkner come on!

I was a raucous, classic rock n roll, denim jacket with all the Zeppelin/Who/Stones patches sort of guy. I had one beat up Carlo Robelli Strat copy and an old Fender acoustic. Now I have twice as many guitars worth 10 times as much... and alas, no time, energy, or hands. You just can't play guitar with one hand occupied carrying a toddler. I tried teaching them to strum while I did the fretboard, just isn't the same though. As far as guitar playing, I went from an almost reflexive picking up of the guitar daily to picking it up if I see the opportunity to sneak out the front door and play for 5 minutes...once a month if I'm lucky.

I've covered my suspicions of an aspie-like stim of playing 'air' instruments. I used to air-guitar to things like Zeppelin's Heatbreaker and Van Halen's Eruption. But since music nowadays usually involves a story about something fluffy, I now air guitar on everything musical on all the kids shows that sticks in my head. Just imagine an Eddie Van Halen finger-tap solo fill instead of the EIEIO verse for Old MacDonald. It's maddening though to find yourself putting an air keyboard line to the theme from Sesame Street.

I used to have a decent (translation: LOUD) stereo system, now my music gets 'played' through the DVD player into the TV speakers. Although most of my music nowadays comes from that wonderful cable TV invention called Music Choice. Every once in a while when the moon is full (and blue), I get to have my 'choice' of music, I'll usually choose blues or revert to my classical (rock) roots.

Not one of my kids tends to share in my musical passion though. I suppose it's somewhat my fault for not ingraining music into the older three. I hope to push music a little more with Liv and Gracie. I have heard various music therapies have a positive impact, but I just want them to enjoy the juxtaposition of music as both a complex mathematical puzzle and an invocation of emotion. I still have that passion for music, but if I can't pass that bug on to one of these little buggers, I will be very disappointed. I'd hate to be institutionalized by one of them at 80 for moving my arthritic fingers to the tune of Purple Haze!

A Night 'Outside' the Life

We got a chance to go out by ourselves...just the two of us (LIN and me, NOT LIV and me). But, of course, we had to have an autism theme. Luckily, POAC of NJ (Parents of Autistic Children) was having a benefit in Monmouth University of the play A Day in the Life, with the music of the Beatles. Someone at work asked me when the last time we were out. I said, aside from movies, shopping and the occasional meal...Nineteen Ninety something...

Anyway, a spendid time was guarenteed for both and they delivered. We didn't win anything but we did win our freedom for a few hours. We were happy to have our wallets lightened for the benefit of such a great organization as POAC. In case you don't know, they provide free (YES FREE) training for parents professionals and school systems on a variety of subjects and therapies for autism in New Jersey. They helped us out much in the early days to give us an understanding of the things we were facing. Thanks for the wonderful time and all the 'Help!' to all of us in NJ!

Stop and Thank Them....

We interrupt this autism rant to bring you a special rant on my personal views:

I moved down to Monmouth county more than two years ago. My commute went from just under 25 miles to just over 50 one way. After a couple of weeks down here I realized I would have to sell my soul to the oil companies in order to continue my commute in the Sable station wagon, so I convinced Linda that we needed a good commuter car. I wasn't going to swing a new car, so I went to a local rent-a-car place and began lusting after a 2004 Sentra that seemed sufficiently scratched up so that I could get a good deal.

After a couple of times visiting the lot after hours, I decided to confront the salesperson about how much. I went to the front desk and the woman said "Yea, jack's here, let me take you to his office. I was expecting some shiny suited fast-talker and i was a little surprised to have the woman tell me "You'll have to speak up for him, he's real hard of hearing....Hey Jack, JACK! Someone is here about one of the cars for sale." It almost sounded like his hard of hearing was somewhat of a running joke in the office. I shook hands with a man who should have clearly been put out to employment pasture a few years ago, but I went with it just the same.

He took me back downstairs and took a long time walking, finding and handing over the keys. I did a solo test drive and came back with the intent of buying. We went back to his office to negotiate. I got him down a couple of hundred bucks, but was more interested in the military pictures and general 'motif' of the decor. I commented on his obvious military service and thanked him for his service to me and our country. He brightened and proceeded to tell me that he was 19 when he arrived at Normandy and had lost his hearing during the ensuing battle.

Jack Morris has always stuck in my head since then. He had been feeble when I met him and I'm not sure if he is still with us. But I'll tell you, his and all their heroics on that D-day will never cease to give me, and I hope generations forever, chills as to the bravery and selflessness it took to begin to rid the world of tyranny. Those chills also apply for every man and woman who have and are serving in our military. From me and my family, I give you my sincerest thanks and appreciation for all you have done and are doing for me and mine and them and theirs across world. Thank you and Happy Veterans Day; may you reunite with your loved ones soon...

Into the Toilet Bowl of Death Rode the 7

It is time---Raffikki-Lion King

Oh...My...God... we're finally going down the road toward potty training the girls. The school has begun to put pressure on us. After all, they ARE 3 and 5. But we've been out of the ballgame for more than 1/2 dozen years, it's more frightening than a guy name Jack coming through your bathroom door with an ax! Be forewarned that the proceeding program is rated 'G'...for Gross.

With the exception of a 1-2 year hiatus between our first and second, we have been changing diapers for 13 years now. I always say that I personally have changed more diapers than most women. OK, I hear you women, putting your hands on your hips saying "Well...you daymn well better have." I admit that I probably only changed between 30 and 35% of the diapers on my children; my wife, probably 60% and the rest by the nameless faceless friends, relatives, caregivers and therapists who have crossed our path. But 30% of some 10 years is twice as much as 80% of 2 or 4 years. I have the pick the childs' butt up by the feet with three fingers thing down pat to where I can, almost literally do it in my sleep. But enough of my braggin'...

With Liv on the spectrum, we never had even considered seriously going on the potty wagon and Grace has kinda went along for the ride; we probably could have started on her a year or so ago, but our heart was never into the struggle. We lately have had some incidents that have made us look at it a little more closely (eewww, it's really yucky). Liv had a MAJOR blowout in the waiting room of the speech therapist; Linda was beyond traumatized, as was the carpeting in the office. So much so that the seating arrangements have been reconfigured henceforth. Plaques should have immortalized to commemorate the 'spot' but alas, not many share our views.

That event and several other 'Top 20 Grossest Moments in Diaperdom' that have occurred, so that when Liv's teacher said "We should try to potty train her", we realized that ours wasn't the only suffering out there. On top of the poop (or maybe just before it), Liv also holds the distinction of having THE smelliest flatulence in the Northeast. She far surpasses me, which family members can attest, is no small feat. She is probably the only child in the school that illicit calls home to proclaim that "she was sent to the nurses because they were afraid something may have gone wrong inside". I think it was more the same as people fleeing from Mt St Helens (she's gonna BLOW any minute!). Even non verbal kids in her class will hold their nose and say "peeeeewww!"

But seriously, Liv has had a long fight with GI issues, which had made potty training next to impossibly in the 3-4 year range. Now that we have her 'settled down' in that area, we now have to work on the coordination. Grace will be easy; just preschool and one therapy session a week will be a cakewalk to get everyone on the same page. Her echoic tendencies should also make it easy to brainwash her, I mean, get the point across about the potty. Liv will be another story, with a full day school and no less than 3 therapists to coordinate with. I hate to waste therapy money on potty breaks, but what can you do?

I just get this feeling that she's going to look at us cross eyed. On the few occasions that we've put on the potty, she's given the reaction that we are trying to dispose her in there. The battle plan is to put her on the potty every 10 minutes for 5 minutes until the blessed event happen, then give her praise as if she has solved world hunger. Great plan with the exception that we barely HAVE 15 minutes to implement it. With this schedule, Grace also on the same and the 'normal' traffic in the bathrooms and I am anticipating a full blown potty war. Accidents, impatience, out and out defiance, exhaustion and of course, comical situations and a few new entries into the Grossest Top 20 are expected.

Wish us luck, we're gonna need it!

I Got a New Drug...

Lately, I think I've found a new drug....

A few weeks ago, I went to a discussion group about how to negotiate through the maze of insurance company jargon, denials and stonewalling to get services paid for services related to autism. It was given by a heroic couple who I'll not mention by name...I'm not sure the publicity is good for the cause they are fighting (if you guys want me to, if you are reading, I'll shout it from the rooftops!). Anyway, me and about 30-40 other parents soaked up the info that they were giving and marveled at the hard work they were putting into there crusade against the legalities of insurance coverage for autism therapies. In my mind, they are truly to be commended for their hard work, again, in my mind, they are truly heroes to us all in the community.

I'd been having some conversations with them on some autism boards a month or two prior to this, and I had given them some words of encouragement, congratulations and we commiserate on the state of insurance coverage throughout the US on these boards. I was glad to finally meet them in person and they reminded me sort of like the way my wife and I work: each attacking the issue of autism from slightly different angles but both passionate about the end goal and with their child's progression, "take no prisoners...I'll take the right flank, you take the left". We got to the end of this discussion group and the gentleman said that he couldn't have gone on without people like me on the boards spurring them on and giving them the incentive to move forward.

ME???? That ranting individual that half the time makes no sense and the other half is trying to make a decision on an issue? I was dumbstruck...I never thought that I could make a difference in peoples lives with my offhand comments and railings against the system! I left there with such a head rush that even the Yankees getting knocked out of the playoffs 20 minutes later couldn't bring me down. I had helped someone who clearly, was doing 100X more for the cause than I was!

It's gotten me hungry for more of that feeling. I'm trying to think about how I can help people and organizations with their issues; it makes me think that maybe I CAN make a positive impact on this little universe that I now occupy in the autism world. That maybe THIS is my purpose for having God send me in this direction. Not only to see how much I can endure, but how much good I can make of it AS I endure it. There is so much to do, but if I can push a person or an organization to greater heights; help someone out of a hole that they feel they are in with their child; offer a suggestion that changes the course of someone or something for the better---maybe it would all be worth it.

I guess that's what people want out of life generally, not just in the autism world. I hope I can get me some more of that feeling though...it's a nice high!

Keep Me Going, Lord

Words of inspiration from my words of wisdom file, for getting me though the tough times:

Keep me going, Lord- Aunt Hilda

That which does not kill us just makes us slower and easier to kill- Snibbor Ynot

I know God won't give me more than I can handle, I just wish He wouldn't trust me so much!- Mother Theresa

Put your head down and just do it...- former ad executive from Nike who had a coworker who was much more succinct.

Lord, grant me the wisdom to prioritize the things I need to do
The stamina to do the things I have to
and the serenity to let go the things I can't-
First draft of the Serenity prayer

Can you tell it's been a tough weekend? Today/Monday was my 9/80 day, my work allows us to work 9 hour days and take off every other Friday. I have just changed over to Mondays to see if we can alleviate some of the work off Lin. Fridays are 'lite' days, no homework; Mondays are a little more crazed. 'Cept that this Monday was Columbus Day, kids were off. That don't stop the work though: Liv was up at 5; two kids to the dentist at 9...Liv speech at 2:30. Lite day except that Linda wound up getting sick and had to go to the doctors today. Bronchitis which could have been just as easily pnemonia with the symptoms.

Getting ahead of myself though. Friday after work I set off to finish emptying (finally our storage facility in Sussex County, two years after we moved. After that I went to my very first discussion group about autism that did not involve keeping children occupied while Linda gathered info before I ran outta steam. Great stuff, but I did not get home until 10:30. From there I get debriefed on the goings on for Saturday; I was flying solo with 4 of them while Lin and Aly went out for the now traditional girls day out for Aly's birthday last month.

Saturday is a surprising cakewalk in the morning, not because of my expert child readying skills, but for Lin's careful setup of the girls stuff the night before. They have 'CPU' from 10-12 on Saturday (Childrens Progress Unlimited in Hazlet NJ ask me about it if you need..fantastic), clothes laid out, drinks ready, bag packed...all dad need do is basically turn the key on the minivan and make sure the t shirts are not on backwards. Still, I managed on time performance getting them there and getting them back again. Grace's hair was a little worse than normal; Liv's was perfect as usual (Lin did it before she left). Anyway, got through lunches, dinners, bedtimes, all the supplements, all the diapers...all without a major meltdown (ME melting down!)...
Linda gets home at 10pm Saturday night without Aly (at Gramma's overnite) and WITH a heaviness in her chest. I tell her to take the sleep late shift on Sunday; I get to sleep 'late' too...7:30...(I don't count Liv getting up and moving her into ur bed at 3am...we're getting used to it.
Sunday: Linda's kinda down for the count. She's taking it slow, I'm kinda back to flying solo again...I'm beginning to appreciate Linda's glazed look that she has on a Wednesday or Thursday night...It's not THAT physically or mentally strenuous, but it's a constant buzz or hum...just loud enough to drive you mad, without being noticable enough for anyone else to hear.
Brings us back to Monday/today. The doc was ready to write her a note excusing her from work...she almost took it, to get a rise out of me. I let her rest this afternoon, doctors orders. But, like many other weekends, I'm ready to go back to work...for some well deserved rest!

BLAJDOG's World

lalalala...lalalala...Elmo's World, that little ditty, I have come to realize, is the warning sign to get two of my kids out the door. The first song, at the beginning of his segment on Sesame Street, tells me we have to get out to the car to get my oldest to the bus; by the time I get back some 10 minutes later it is 'crunch time' to get the last minute details done on Liv before the strains of the ending Elmo song signal the inevitability of Liv's bus pulling up. Our bus driver has recently been reliably punctual due to complaint from ill-mannered parents during back to school night; imagine complaining on the bus's timeliness after less than a week back!

Today's morning was a little more hectic than normal; I was up 15 minutes late, leaving us 50 minutes to feed dress and get Liv out the door; easy if that were the only thing we were doing. But, in 'emergency mode' Linda and I (Linda mostly) are a blur of activity and we even wound up with a few extra seconds to spare. In any event, eggs should be the only thing scrambling in the morning; we both hate the way it makes us feel. It would help if Liv slept in her OWN bed all night (and if we had the A/C on last night)!

This time of year is most perplexing in the NJ area because it's hard to figure out how to dress everyone: mid to upper 50's in the morning; 70 up to even 80 in the afternoon. Me being warm blooded and my wife on the 'colder' side, the struggle to dress for survival is always a source of friction:

"Should they go in capri's or shorts?" Linda asks

"Dunno," Replies meteorologist dad "it's going up to 80 this afternoon."

"How's it out NOW though?"

"Just a little chilly, probably could get away with shorts."

"Maybe I should put them in long pants?"

"No, no, it's not THAT bad."

"So capri's?"

"Yea, you could do that."

"You sure they won't be TOO hot?"

" Capri's or shorts, either way."

"What do YOU think?"

"Capri's."

"How bout a sweater?"

You see where this goes, the indecision of what's going to be best, what's going to provide the maximum benefit with the minimum discomfort. It struck me though, that this is the same with therapies for the girls. We have no guarantees for what the future weather will be, we can only provide what we think will be the best for them in their current state. No one's there saying "If you do X hours of ABA, Y hours of speech, Z hours of OT, they'll be fine." What's the best outfit (therapists/programs); what's the right sweater (mix of therapies that we can shed or bring back depending on their current state). There is no real right or wrong answer; it's all about how it fits them (and the comfort WE feel in providing all the thing we think are the right thing).

We can hope for more sleep tonight, earlier alarm reactions from me. Hopefully, we can also get some clearer pictures on what therapies will work best for autistic kids, because scrambling is for eggs indeed...

Tit for Tat

To continue on the Jenny McCarthy issue (scuse the title pun ;) ), she is hitting some pre-tty big venues on her self-described book tour: Oprah, 20/20, Larry King, Good Morning America, The View, People. It is somewhat heartening to have coworkers IM-ing me about Jenny stories; hearing about relatives calling/writing to parents of autistics saying "have you heard the 'latest' therapies that JENNY is using to help her kids?". Uhh, yea, we've been doing that for 2 years now, don't you remember me talking about that? No matter, it's good to see some of what we've been espousing getting some major media coverage.



I'd be happier than a pig in gluten/casein free schtoof, if it were not for the continued harping on the thimeresol issue. I saw it last night on Larry King; Jenny spouting about vaccines and causation and looking expectantly over at her DAN! doctor Jerry Kartzinel. Jerry looked quite uncomfortable; he knows full well that any misstatement will be dissected, analyzed and shouted down by those looking to discredit anyone who has an anti-vaccine bent. Even Larry King got in on it, asking the good doctor what we should do about vaccines if there indeed was an issue; Larry did not get a good response.



Despite their shortcomings on causations, I thought they have a good story to tell about autism. Our kids our precious; we should question medical wisdom that there is nothing that can be done for them; we should not give up on who they are and can become and that this can be accomplished both therapeutically AND biomedically. Sometimes I fear that my opinion is the minority in thinking that biomedical interventions are and should be distinct and separate from the thimeresol argument. I feel that much of the good biomed can do is swallowed up in the vaccine discussions.



Some are saying that the Jenny McCarthy publicity is actually hurting the autism population. That discussions about vaccines obfuscate the needs of the parents of autistics and more importantly autistic adults. That her 'don't give up' message is demonizing those who choose to not go down the biomed path. While I agree to a certain extent, I would also like to take those to task who are ardently anti-biomed or only pro mainstream approach:

• Isn't it hurting those in the autistic community as well to deny the possible link of gastro-intestinal issues in some of the autistic population?



• Doesn't it hurt some in the community to deny that Applied Behavioral Analysis IS a viable therapy?



• Is it so far fetched that certain autistic children MAY have trouble properly processing heavy metals and/or other insults in the environment?



• Wouldn't you agree that the mainstream medicine is frequently giving people on the spectrum substandard treatment and that; just like law enforcement, they may need to be 'trained' on how to deal with autistic patients and what may be common cocommitants?

I understand fully the need to rail against the one note sambas being played by likes of Safeminds and others locked into the 'hope' that it is all in the thimeresol. But in the pursuit of the truth, I feel we are throwing quite a few babies out with the bathwater. Quackery is pushing easy answers and simplistic, sometimes expensive therapies. I frequently disagree as to causations, but there are kernals of truth in what some are doing that are being whitewashed; things that could help many in the community.

867-5309

Everyone remembers the number who had heard the song, but the girl's name? Jenny, Jenny, who can I turn to? Tommy Tutone didn't have her in mind, but in my world I'm going to steal the song for my purposes and call her Jenny McCarthy. Jenny's our newest spokesmodel for the autism cause. I guess I have to fess up and say that I am a man and, as such, have a certain affection toward a woman who is both funny and sexy.

I did not see her appearance on Oprah, but it is very important, at least to me, to know about things that go out about autism in the media because this is often the only ideas that 'normal' folks get. We inside the autism community are locked in our own internal struggles, both at home and within the confines of the community itself, and we have little perception of what the real world thinks. Shows like Oprah shape opinion for millions. I grapple with the negativity that so many are against in the autism community. But there has to be a balance somewhere between the financial and emotional hardships that families face, without showcasing our children as out of control monsters.

In this case, from what I have read on the Oprah site and from second hand accounts, the appearance was a positive one for autistics, aside from the pro-biomed/anti-thimeresol message that so many find offensive. It has also been suggested that Jenny might be an opportunist just using her situation and celebrity to sell books, while I wouldn't doubt this is one of her top two reasons for touring at this point, I would think her situation is here to stay; and that while further books are sure to be on the way, Jenny is with the autism community to stay.

I wonder whether having a celebrity really gets the focus where it should be. It does allow people to see that it affects everyone and that the autistic child is still a 'normal' child, not a freak of nature. But with all the personal therapists, private schools and tutors nannies and the celebrities themselves taking a 6 month or 1 year hiatus to focus on their child, does the public get a reality-based view of educational, monetary and emotional turmoil faces by us ordinary parents and their ordinary children? Will these self absorbed stars even give a nod to these issues or will they continue on the existential view of causation, healing and reason for autistic existence.

In short, I applaud Jenny getting our number on the wall, I just hope we can open up more discussion topics like how it affects all of us and not just how it affects their careers...

We AIN'T Gonna Take it

I'd like to take a moment to try and help those less fortunate than us, to lend a helping hand to those struggling day after day to provide what is best for everyone. I came to the realization that these noble groups need a helping hand, a rallying point from which to gain momentum. I am, of course, speaking of those hapless fighters for the American way of life, the insurance companies.

I wanted to see if I could alleviate the pressure from my little end of the universe, the autism community. I came up with a slogan, an acronym to help them wade through the sea of bills being submitted by our community. Something that would stem the tide a bit to allow them breathing room. So, for their benefit, I bring you---A.I.N.'T....Autism Is Not Treatable.

This will assist them in stopping anyone with an autistic child's medical or therapeutic expense. Rather than having to say that Applied Behavioral Analysis is 'experimental' and might only help a small percentage of children, they can just say "This AIN'T covered". Instead of having to say that speech or occupational therapies show very slow progress in many autistic children and we can't cover any more than 10 visits, They can simply stamp "AIN'T Covered" on the bills. All those 'concomitant' conditions: seizures, gastro-intestinal problems, motor apraxia, sleeplessness; doctors everywhere are already attributing these things as 'symptoms' of autism, let's just eliminate the burden and stamp them "AIN'T Covered".

Yes, all these can be eliminated from the overwrought clerks and their overflowing inboxes. The country can be safe from these unnecessary intrusions and potential destroyers of the American insurance system. American's can be 'insured' of lower premiums; and all these issues can be taken care of in the place where they rightly belong: all administered by the local school boards in their local communities.

Now before you consider me heartless, think of all those poor unfortunates that are adversely impacted by these unnecessary intrusion on their way of life:

• To the thousands upon thousands of stockholders, many of whom may be your parents and grandparents (some maybe even have autistic relatives) will be ensured a steady flow of much needed income to pour back into the economy
• To the executives, who are pressured beyond measure to post those double digit profits EVERY quarter for Wall Street, lest they are put on the 'sell' list...
• To the doctors, nurses and office administrators who continually have to submit and resubmit these bills
• To the arbitrators and lawyers fighting hard to keep the system fair and equitable for all of America
• But most of all, to all those hard working clerks, overburdened with the deluge of bills from the thousands of kids receiving all these experimental therapies, many of which take YEARS to show any kind of improvement. Rejecting, resubmitting, trying to stay within the confines of the rules and regulations put up ONLY to serve the greater good of society. Their's is truly a thankless job.

Yes, thank you to all you folks, I hope my proposal will make for a better world for you and yours. God Bless America!

Rotation Time

Ah Fall. I really feel sorry for all of y'all livin' way South of the Mason-Dixon line that don't experience it. You know who you are. You have that pair of green and red shorts just in case it's a 'little warm' at Christmas! I commented to someone the other day that it FEELS like school. Meaning it was just cold enough that you could just barely feel it, the sky get that deeper shade of blue, the bees start acting crazy. It's not really Fall that I love, it's this time and just when it starts, about a week before 'near peak' on the tree colors in Northwest NJ. Then November and on, it's just pre-winter.

Anyway, it's that time again for those of us with this sick money saving idea and multi-child households to start packing and unpacking again. We see if we guessed right on the clearance purchases from January of last year. If we guessed right on what things could be passed to the next kid. Did Yu-gi-Oh maintain his popularity?

If I had room and time, we'd have this process down to a science. Alas though, there is no magical corner of the attic with named shelve for each kid and season/year useful. There is no time to sort out the summer stuff, while at the same time, scramble for those long sleeve shirt and that jacket we got on clearance for Jason for 7.99.

Two very frustrating things in this process. One is having all the summer stuff packed and lugged into the attic, then finding the odd swimming suit or shorts. The other is finding the season's clothing AFTER the season has passed. This will be inevitable as I dig through the dozens of bags I'll pile through, only after finding every screw sticking out of the attic floor with my KNEES! "Aw man! Here's all those new short sets for the girls that we bought last fall."

Mercifully, we have some ready-made transition children: 10 hand down to 8 by; 5 hand down to 3 girls. This years clothes become next year's basics for the younger. In theory anyway. The boys are becoming two completely different builds: the older, shorter and skinnier, the younger taller and wider. So forget the interseasonal exchange for them. I can't even figure out how to sort their laundry anymore. Pretty much exact same sizes, pretty much no chance for me to get it into the right drawer unless it's one of their favorites or the Zen master of Clothing identification can point it to the right pile. Confucious (Linda) say: "Stripes of white and Spongebob will pass to Dillan solids of Pokeman are destined for Jason's drawer"

Men kinda get a bad rap in the clothing department. Identifying who gets what clothing is a branch of science like zoology. But mothers think it should be some kind of instinctive knowledge. I'll hold something up and say "Grace or Liv?" I'll get the rolling eyes.
"Is that a onsie" (Phyllum)
"Yea"
"What SIZE is it?" (Class)
"4T"
"Does it have one of those extenders?" (Order)
"No"
"Any stains?" (Family)
"Not Really"
"Is Livie's name on the tag?" (Genus)
"Yea"
That's Gracie's (Species)

See men are used to absolutes, this is an evolutionary science. Kinda like studying those fast-mating fruit fly genetics. I never liked Biology (yea, smarta$$, then why do I have five kids, very funny). So textile biological evolution is not for me...

I still love fall, but I can't wait to get through this sorting process...it ends...probably about two weeks before the spring rotation...