I Finally Found My Calling

It's been pretty much as I expected this past week and a half. I could get used to this: No driving; no lifting; much less housework; the ability to pull out the 'shoulder' card and get anyone in the house to do my bidding; Sleeping late at least four or five of these days ("I LOST COUNT!" he said in an almost half cackle). Yup, if it weren't for the pain; and being locked up in this house; and having a wife becoming unhinged because she has MORE work; and not being able to take myself anywhere; and these kids getting under my skin almost as much as I'm getting under theirs; and having work, both home-work and work-work, begin piling up...Yepyepyepyepyep, I coulda got used to this...



But it all kinda starts back up again tomorrow. I promised work that I'd start working from home full time tomorrow and go back to the office next week. The girls start their summer school tomorrow; shape of things to come, we have to get them BOTH out the door by 7:30 (any seismologists out there, please disregard the potential tremor at 7:25 AM EDT...that'll be Grace's tantrum). Linda's schedule looks more like a UPS route than a summer day: pick ups, drop offs, layovers. I get to play lazy dispatcher and watch the more perishable 'packages' so that they don't spoil in the car and drive her bonkers.


But, minus the shoulder recovery and this could be the ideal life. So if anyone wants to finance a six figure salary for me, I'll produce a regular post and raise a whole buncha kids...I could even have 'em wear T-Shirts to advertise your products. Give us a jingle and we can work out the details...

Deja Mew

Oh boy, what a sucker I am. I have exactly zero influence in my house when it comes to matters of the heart. First, let me take you back almost exactly one year, to my catiasco of 2007. Fast forward to today and it's more than a coincidence. Same issue with our eldest cat, bladder stones; same operation at the same vet. Same friggin phone call from the same friggin wife with the same friggin problem. To coin a musical phrase, and they call it- kitty love. My end of the conversation was reticent: "No!", "Absolutely not!", "They will not scoop, water and feed them right!" Linda took it blow by blow and promised to have the kids sign a contract to be in control of the cat duties. Linda was demure but steadfast...she wanted this kitten.

I could have vetoed the deal, really I could have. I probably would have been given the cold shoulder for only six to nine months. Secured my position in the Cold Heartless Bastard Hall of Fame. Instead, I get a cover story in IQ: Idiots Quarterly. I didn't even get a choice of names, by the time she arrived at the house Linda already had the name Amber picked.

I guess on the plus side is it's a baby that does not have diapers. The cat is perfect (that was one of my stipulations for ANY four legged animal that comes through these doors), she's fiesty AND loveable. She was bottle fed from one day old and is completely comfortable with people. Livie's high pitched screech did freak her out a little, and the shear volume in the house is obviously a source of discomfort; all I can say is "GET USED TO IT KID". Grace has got her name down pat already, and while there is no interaction between them per se, there have been several mid-living room near collisions between them. I even have several real poor Amber jokes:

What do you call Amber if she sticks her claw in an electrical socket? Ember
What do you call Amber if she pisses daddy off too much? Amberger
What will Amber say if she gets locked out in the winter? Damn! Burr...

So much for my shoulder surgery recovery. I'm last week's news, the latest chaos is a fuzzy brown kitty named Amber.

One of My Favorites...Trying to make St Peter Laugh

I can't let the passing of George Carlin on Sunday of an apparent heart attack go unmentioned. In case you haven't noticed, I try to be funny, but people like George made it look so damn easy! I remember sneaking into my sister's album collection in the mid 70's and pulling gems like FM/AM, Class Clown and Occupation: Foole out and listening to all those forbidden words. But he hooked me with all those references to my life; routines about getting a kid to laugh so hard in the lunchroom that he got Jimmy Smith to pass an entire tunafish sandwich through his nose: or the Spanish speaking Father Rivera and the confessional line that you saw moving and the way us 'catlick' boys confessed. Or Wonderful WINO radio and the broken clock or the weather forecast of "Tonight...dark, continued dark through the night, with widely scattered light in the morning". I must confess, I didn't get half the concepts he was talking about in those albums, being just 10 or 12 at the time, but I still laughed my ass off.

Funny thing was that those routines were ingrained in me, and I found them coming out years later, and as long as I would say "As George Carlin said" I could get away with using his stuff to make people laugh. As I got older, I found his brand of observational comedy irresistible. There's nothing funnier that looking at a bizarre or ordinary situation and finding that humorous twist to it; he was the undisputed king of it. He made people like Jerry Seinfeld look like they were observing the weather in comparison.

I just envision him arriving at the pearly gates and trying to talk his way into heaven, with St. Peter pointing out the various digs to organized religion he's done during his carreer. Let him through Pete, we can't let devil get all the laughs. He'll have you in stitches with a half hour on "what's with all the white up here"!

Thanks, George...

Outta Commission

I'm going in for shoulder surgery this morning. I can't decide which direction to take the next few posts. I could go with:

• The disability angle- realizing what it is like with some kind of disability.
• The wife/disability angle- Linda all of a sudden having 6 kids and one less adult...
• The I am in excruciating pain and need someone to b!tch at angle
• The funny, my kids are going to forget my shoulder out of commission and cause me excruciating pain angle

We'll see which way it develops. I'll talk to you later...

Take it From Someone Who Knows...

I'm going to go out on a limb here and expose myself and my internal conversations when it comes to dealing with society at large. It will hopefully not be like the foot in mouth that Garth from Wayne's World when he said "Did you ever find Bugs Bunny attractive when he put on a dress and played a girl bunny?" I may have all the neurotypical people backing away looking for the door (or they may just agree with me, who knows?). But, since I am on the Hub and I at least have a fighting chance of a few of the neurodiverse reading, I'm sure they will find the rantings on NT society's foibles at least mildly recognizable and entertaining...

My light bulb went off a little while ago when someone on the Autism Speaks board made mention of how they needed to figure out a way to 'extinguish a behavior' in the NT world: specifically, the behavior that finds clerks, cashiers, government servants... NT people in general, ignoring you like you don't even exist. It got me to thinking of all the types of NT behavior that we'd might need put people through ABA for a few years for. Hey, maybe ABA could be done in jails to try and 'correct' some of those more extreme non ST (socio-typical) behaviors. I started thinking about times that I'm on a line, especially those in a crowded stadium or some other place where a somewhat haphazard queue gets created, watching those feigning ignorance about where the line ends and who's on which line, then inserting themselves well in front of me. I thinking the whole time what I'm going to say, how to politely confront them; then when it finally happens, I chicken out and don't say anything.
You people on the spectrum think that navigating the public social NT world is easy for us 'colorless' people not on the autism spectrum? Ha! think again! There are a handful of types of public personas out there that have this...this, shall we say, NT spectrum disorder and it takes a keen sense just to identify them...there are:

• the polite (people like me just mindin' our own business, a little geeky, self conscious, awkward, these are the closest to 'normal')
• the righteous loud (those like me and you with a sense of right and wrong... but with no fear)
• the weasel (those who rely on stealth to put one over on the crowd)
• the ditz (those, either by conscious design or by actual mindset, who think that ignorance IS an excuse)
• the bull (those who, again, either by conscious design or by actual mindset, actually believe that the world is their oyster and "you ain't freekin' tellin' me what I can or can't do!")

Upon closer examination, however, I find that these are just categories of types of NT's out there and that there are, interwoven in these groups, recognizable patterns of true disorders that may be treatable or at least categorizable and further research could be done. So, from the Faber College School of Sociology Research, here's a top 5 list of NT disorders that have been documented and no, this is NOT how all NT's are, we are just as appalled as you on the spectrum, but remember, it's a way of being for them:

1. Of course, the aforementioned line cutter. The righteous loud are the best antidotes to this behavior; if it's a big enough crowd, you can even pretend to be a RL and you can get a lynch mob started. Just make sure you say something within the 1st 5 seconds of the 'cut' or you might just get the "you ain't freekin' tellin me" speech...


2. The parking lot syndrome- There are so many sub categories in this, but most of these are a lot like the line cutters, only with 1000+ lb backing his or her desire to get the best. a)the shark, who circles the lot in search of the tender morsels of close parking spaces (even though there are 100 that they pass by that are only 10 feet farther away); b)the lurker, who will dive from the opposite direction if you are waiting for someone to pull out; c)the little red corvette, who park their precious piece of metal in such a way that takes up 16 parking spaces; d) the crayon over the line, who cannot park evenly between the line and it's closely related relative e) door smasher who park so close AND open their 1969 coupe De Ville door as if they are launching a land rocket, then feign not noticing that YOUR door is now wrapped around theirs. So many in need of a cure (oops sorry, recovery from), but i assure you that the above only makes up about 10% of the NT population...it's just that the 10% do a lot more driving and shopping!
3. The super market developmental disorder- You KNOW there are a few that need some intense therapy in here. Those who do the shopping cart in the middle of the aisle; those that park their cart and shop right across from it; those parents (with non autistic) bratty kids; oh the sale shelf clearers (I freely admit that's us!), the 3 cart family at the last register open (again... us). And of course, the classic, the 11-18 item person in the under 10 express lane (these people have such a strong lobby that they have actually CHANGED signs to accommodate them "Around 10 items or so".
4. Pervasive Driving Disorder- This category could possible be a book in NT disorders in it's own right. I will have to do some broad categories here, lest I turn a 5-10 minute read into a 2 hour one! So many symptoms, which ones are the worst. OK lets start with a juxtaposition: fast drivers in the slow lane and low drivers in the fast. The allegory of drifting: those who drift from lane to lane with no directional and those whose minds are drifting and forget to turn it OFF! Professions: the weavers who use all six lanes and the shoulder to get into the lead and the beauticians who are busy on their appearance, whether it hair, eyes, lipstick makeup. Oh, there are cell phone talkers and high beam flashers and kid yellers and sandwich eaters; enough dysfunction to fill a stadium.
5. Cell Phone Hyperactivity Disorder- last but not least in the disorders of the NT world, the obsessive need to be in constant contact with others and with the outside world even though they are in the outside world they need to get inside the outside world by getting on the internet and therefore in touch. NJ now has a ban on handheld cellphone usage in the car, I think cellphone usage has actually gone up, with just a slight decrease in those looking like Gary Owens with their right hand up to their ear. Yes folks, there truly IS no cure for this end of the spectrum, have a heart when they answer their phones at a classical concert, they are compelled to do so.

I hope this will give you a better understanding of some of the more specific disorders with the neurotypical world. If you have others just drop a line. If you would like to donate to the cause of eliminating NT from your world, I'm trying to buy the NTSpeaks.com website name, but some 14 year old is squatting on the rights... so until then, just donate to the elect McCain campaign.

COMMUNICATION BREAKDOWN

Having a non-verbal autistic child holds some special challenges and seems to put us at the heart of some of these moralistic, therapeutic and causational issues. To give a quick recap, Livie regressed from 50 odd words down to zero over a period of a few months from around 14 months old to 20 months. For a more heartfelt description, see previous post .
Currently, we are dancing the line between using 3 types of communication: Trying to get her to vocalize, having her use sign language and using a PECS book. Each has its plusses and minuses, advocates and detractors, and there seems to be clear battle lines drawn between them. Many will argue that trying to force spoken word will devalue the child's other communication abilities; sign advocates seem to be staunchly against PECs (for you Jewish folks, it's kinda like kosher, you can't let the sign touch the PECs picture). PECs will say it transitions a child easier into other forms of electronic forms of communication. Speech people will talk up the mainstream opportunities speaking will afford.
To add to the mix is her diagnosis of apraxia. It's tough to get a hold of where or even if apraxia is part of the spectrum. What is it that 'causes' acquired verbal apraxia, which is how our speech therapist initially named it. Just the words connotate that her apraxia condition was caused by some injury.

Do I push to get words; do I force her to use sign, which she has trouble with because of motor planning or do you go with PECS and somewhat limit her ability to freely communicate? Is her 'non-verbal-ness' part of who she is? I don't think so, or at least her 'non-communicative-ness' isn't part of her. She is frustrated when she cannot convey herself to us.
Those of you with non-verbal children can probably empathize. You want to help them get it out and many times it's just not clear which way is best and right. How far do you push, WHAT do you push, how do you coordinate your wishes on to therapists and school systems who are often in another camp when it comes to 'what is best' for you child?
Just writing about it makes me tired, no clear answers, lots of opinions and you in the middle just trying to do what's best. Sorry, I'll think more funny stuff next time...

Changing Stuff on the Whiteboard

Sometimes you think you have all these best-laid plans, you got it all figured out, then someone throws a wrinkle, a new idea, or some kind of roadblock into you plans. I'm not sure I've covered it here, but we've had Grace in a preschool disabled class this year, and the half day program just hasn't worked out. To the point where we called an IEP earlier this year and planned to have her transitioned to an autistic program this summer then into the fall. We had felt pretty good about the decision, she would have her transitioning issues worked on and she would be engaged throughout the entire day, rather than be pretty much left to her own devices for half of the half day.

Well, a somewhat perfunctory visit to her developmental pediatrician sent us a spinning. For us, we feel a developmental pediatrician is kinda like having a lawyer. You have them around to kinda scare school systems and insurance companies into doing what you want. "You think she doesn't need speech? Well, MY developmental pediatrician is BF Hutton, and BF Hutton says.." When BF Hutton talks...school systems listen!" Anyway, BF Hutton disagreed with our assessment of what Grace needed, she thought we needed to work more on her socialization and that our choice would leave her lacking in this area. But since we are 'Grace development' specialists, we take it with a grain of salt. And since we have a rather extensive network of professionals to bounce opinions off, we have decided to look at the program she is recommending, but only change if we are so floored by the experience, that we WANT to change over.

It gets me thinking of all those poor new parents though, who don't have the benefit of 4 years experience with another child; who are intimidated by either the school system, the medical professionals, or perhaps even a spouse or family member. It makes me cringe to think of all the bad decisions being made for our kids out there on the basis of prejudice, bias, incomplete experience or, worst of all, financial considerations.

Who's Regressed First?

I challenged myself on one of the autism boards to write the famous Abbott and Costello routine 'Who's on First' written in the subject matter of the autism/thimeresol/vaccine argument. I didn't even come close to the comic genius that they had, but I feel, if they were around, they could find some humor in the arguments that some give as far as autism causations. I couldn't waste this posting it on a 'board' in any event.

Now, I don't want any folks memorizing this and using it as a verbal stim to calm down but, here it goes:

You got a cause for autism?
Yea it’s vaccines.
Which ones?
All of them.
What part of the vaccines specifically causes the autism?
It’s complicated…
Can you give me an overview?
Ok, it’s the thimersol.
But, thimersol has been removed from vaccines.
Not ALL vaccines, it’s still in flu and there are trace amounts in others.
Wait wait, you told me that the increase in autism is due to the vaccines, right?
Right.
And that thimersol is a prime ingredient causing it right?
Right.
So if we took 99% of it out of vaccines, we would have seen a noticeable DECREASE in autism 3 years later when we took it out, right?
WRONG. We have to have it ALL out or we’ll still have these high rates.
But not all kids even GET flu vaccines, and the trace amounts of thimersol still in there means that, these kids are not even getting 1% of the exposure they did 10 years ago, yet the numbers continue to go up.
Yup, it’s because of the 1% is still in there
Hmmmph…OK let’s try a different angle, do you have evidence to support your theory?
Yup, sure do.
OK, what kind of evidence?
Testimonials.
Wait, testimonials? That’s not evidence,. That’s a reason to investigate with scientific studies.
What? You don’t trust the parents?
I trust them, but that’s not evidence, have they done any studies?
Yes.
And what did they find?
That vaccines do not have a causal relationship with autism.
So that means that this ‘epidemic’ is not caused by vaccines.
No, it doesn’t.
Huh? You just said that they have done studies and they have found no causal relationship between autism and vaccines.
Yes, but that doesn’t mean that the epidemic is not caused by vaccines.
Why?
Because of the testimonials.
But testimonials are not evidence, the studies are.
No they’re not.
Why?
Because they’re tainted.
Tainted? How are the studies tainted?
Because the government and pharma don’t want the truth to come out.
Government and phar….who told you about this?
No one told us, we just know.
How do you know?
Because of the testimonials.
But the testimonials are not evidence.
Ah Ah ah…trust the PARENTS
Ok, so, what OTHER things in vaccines are a problem?
Live viruses.
Live viruses? Isn’t that what make us immune?
Yup, but it also gets lodged in the gut.
In the gut?
Yea, then it passes through the blood/brain barrier.
Blood brain barrier, and then it causes autism?
Autism and all kinds of nasty things.
And the thimersol makes it worse?
Yea, they both make a mess of the brain .
And the evidence you have is?
The testimonials…
But testimonials are not…
Uh uhhh…TRUST THE PARENTS.
Wait, I heard about this virus connection..it was ALSO disproven in some studies.
Studies performed and/or financed by?
The government and/or pharma…
Ahh…can’t be trusted
You got scientists on your side?
Yea, we got scientists.
Good scientists?
Yea, the best…
And they do research?
Yup…
And what do other scientists say about their research?
They don’t like it.
And why don’t they like it?
It’s complicated, but in short, all those other scientists are bought out , stupid and do not have vision.
Bought out, by who?
Big Pharma?
Stupid?
Yea, they don’t understand the vision.
The vision?
The vision of the testimonials.
But the testimonials are not…
Ah ahh, TRUST THE PARENTS!
OK now I got it, all of the parents create the evidence, all the scientists are bought out by the government, all the evidence backing the vaccine causation theory have been quashed and everyone’s a liar except for?
DAN!
DAN!? Who’s he?
He’s our shortstop…


And for the insprational non-sequitor, a poem by William Ross Wallace:

The Hand That Rocks The CradleIs The Hand That Rules The World

Blessings on the hand of women!
Angels guard its strength and grace,
In the palace, cottage, hovel,
Oh, no matter where the place;
Would that never storms assailed it,
Rainbows ever gently curled;
For the hand that rocks the cradle
Is the hand that rules the world.

Infancy's the tender fountain,
Power may with beauty flow,
Mother's first to guide the streamlets,
From them souls unresting grow--
Grow on for the good or evil,
Sunshine streamed or evil hurled;
For the hand that rocks the cradle
Is the hand that rules the world.

Woman, how divine your mission
Here upon our natal sod!
Keep, oh, keep the young heart open
Always to the breath of God!
All true trophies of the ages
Are from mother-love impearled;
For the hand that rocks the cradle
Is the hand that rules the world.

Blessings on the hand of women!
Fathers, sons, and daughters cry,
And the sacred song is mingled
With the worship in the sky--
Mingles where no tempest darkens,
Rainbows evermore are hurled;
For the hand that rocks the cradle


Is the hand that rules the world.