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.

Kindergarten Reality Shows

I have to admit, with my schedule this week, I haven't been up on the Alex Barton situation in FL. For those not in the know, Alex is a 5 year old kindergartner who was the unfortunate butt of a sick attempt by his TEACHER to vote a child out of the class- 'reality' TV style. The children were all told to say what they did not like about the child and the vote cane out something like 14-2 to vote him out of the classroom. Bad enough for ANY kid to suffer this kind of humiliation, but to find out that this child is in the process of being classified on the autistic spectrum and the jaw just opens even wider.

I just have so many unfinished sentences coming out of my mouth about what is so friggin wrong about this situation:

• Let's start with the probability that most of the kids in this class have never even SEEN a reality TV show, let alone understand the concept, so have these kids mimic the best(?) that society...
• Yea let's hold Simon up as a role model for our kindergartners, brutal honesty is going to instill...
• Since these kids have no idea of the reality show format, what does this prepare the kids for, the 'realities' of grammar school and middle school? Better to get them prepared early for...
• If this teacher had a beef with the child about...about...ANYTHING, it's best she left out the administrators and parents and took it to the court of public opinion...
• Let's change this to the same situation, except in the teachers lounge where all the teachers got to critique Wendy Portillo and vote HER out the school. Even with a fully functioning adult with a full understanding of parody and comic relief, this sort of demeaning behavior would hurt like hell and would probably meet with the dismissal of some of her...
• And the school and police found nothing WRONG with this? They "concluded the matter did not meet the criteria for emotional child abuse", yea right, he'll just bounce back from...
• I guess Mrs Portillo didn't have enough time the night before for a lesson plan...but had time for Survivor, Dancing With the Stars, Idol and the host of other shows that are part of the real America...

Folks, bullying from KIDS should not be tolerated. Thankfully, it is being treated more and more with the seriousness it deserves. Most of us carry the emotional scarring of those days through our entire lives. To let a teacher do this to a 5 year old boy and just shrug our shoulders is just...just...dispicable

Diary of a Mad Week- Monday

Mon May 19, 1:00 pm- So begins the practice journey into me solo-ing this whole kid thing. Today is just a dress rehearsal; Linda is going to a graduation party for her brother. I have to do the lunch for Grace, the 2:00 pickup of Liv, the 2:30 drop-off at speech, the 45 minute entertainment of Grace, the 3:15 pick up and the scramble for the 3:35 pick up of the boys. Then it's on to dinner, baths and homework and bed before 'da boss' gets home, hopefully before 11.

Optimism and cockiness permeate my being, I can DO this. I have one day of work tomorrow, then she leaves on Wed at noon and I'm ALONE Wed-Sun night, with just myself and 4 of the kids. Aly, the oldest, is going with her mother and her grandmother to Chicago.

What did Linda tell me? Stay off the computer and stay focused, but this is going to be too good to NOT document. Either complete and utter victory or abject failure...it'll be a compelling story either way...so stay tuned...

4:15pm- So far so good. Caught a break when Grace fell asleep on the way to speech (normally her patience level is that of Veruca Salt from Willie Wonka, so I dodged a bullet). Didn't get a break finding that my patented underwear under diaper combo wasn't on Liv; had to run back to the car. Hard to look 'manly' in front of construction workers running into speech with a diaper...oh well...Timing perfect getting boys. The kid is GOOD!

6 pm- Amazing how a turn of events can turn events quickly against you. Kinda like a Spielberg movie where the seemingly inconsequential details come together to create HAVOC. Mine were a slow draining tub and watermelon. Livie LOVES watermelon, I had watermlon in the fridge. Perfect desert. Hey, now I'm sailing way ahead of schedule and get Liv into the tub. Liv's happily splashing away in the tub and Grace decides to join her. Suddenly, without warning, as if the staff of Moses was placed into the Nile, the water turns...no not red. Out comes Liv, onto the toilet, Grace, wandering the hall naked, proclaiming the news.

OK, nothing I haven't handled a dozen times before, I send Liv into the living room and, noticing that the tub is draining much too slow for my liking, decide NOW is a good time to try and speed it up. Find the plunger, try to work magic...nuthin'. OK, fair enough, abandon side project and get to sterilizing tub. As always in the movies, there is another twist..."DAAAAAAD! Livie's pooped on the couch and it's EVERYWHERE!" You parents must know the feeling when you become numb to the situation and just put you head down and get to work? I almost went whipping right past that straight to nervous breakdown. Got out the trusty Bissel Little Green Machine, switched it on and...no suction. Eye twitches...investigate and find that the Green Machine is clogged. With what? You don't want to know and I don't want to remember. Got it running finally. Proceed to the couch...

7:15- The hour that would have grossed John Carpenter out is finally over. We have our own 'Oscars' in the house, represented by the Sesame St. Grouch, given for grossest moments in our history. While none of the 3 were the worst in and of themselves (although the couch EASILY cracked the top 20), the combination of events has earned the hours of 6:15 to 7:15 an Academy of Motion Sickness award for nastiest continuous cleanup job...

Diary of a Mad Week- Tuesday

Tues- Nothing new to report, other than my wife shrunk and got younger in the middle of the night (Liv woke up and she gets plopped in the master bedroom with me while Linda seeks refuge on the couch). I have many loose ends at work that may play into the week if I'm needed, my back up is out on vacation too. But the out-of-office messages are set up and off I go...have a nice vacation, yea, right!


Linda grills me on what, who, when and how, I remember by osmosis from repeated exposure to the schedule and quizzing. My mother would have had notes hung up all over the house; from how to operate the dryer to which way to wipe. It was before her time, but if Post-it notes were around in her day, she would have been their Post-er child.

The big difference is nowadays is that we are all cellular-ly (yea, I defy you to try and say that with a mouthful of peanut butter) connected. In the past, you needed hotel numbers, conference hall numbers, you had to time your calls and pay through the nose for them. Now, the only problem is if you forget to put your phone on buzz during a presentation. If I have a question or if I can't find something, I won't hesitate to dial her cell "Hey, hon? Where's the Valium?"

Aly is beginning to get more sentimental and mushy; she, like me, has this thing about good-byes...anything overnight and she gets teary eyed. She's threatened to pack Oreo, 'her' cat, several times...as well as Grace.
Linda is trying to cram in all the things she can do up front to make my life easier, bless her soul. I'm halfway between panic and calm confidence. Yesterday was just a perfect storm and I was just not being careful. Ounce of prevention and all that good stuff...

Diary of a Mad Week- Wed

2:00pm- The '3 generation girls' have left the building. Linda was a blur getting everything set up for me. I didn't get another pep talk, she gave me an operators manual on how to get through the next 48 hours instead (the weekend she figures I can handle on my own). Reading through the book she wrote, I think I'll try and find a publisher and make a killing; this girl can out parent Dr Spock times Dr Sears! Controlling like my mother was...who do you think us guys choose to marry anyway?
3:00pm- hour one out of 110 complete, all children still accounted for
5:30pm- all kids fed, I'm ahead of schedule...a feeling of deja vu and forboding comes over me. Grandma left watermelon...ummmm...no, I'm not pressing my luck, I still have to do baths...how 'bout a cookie? Better yet, a banana...
8:15pm- the girls' plane finally takes off (2 1/2 hours late), one of our fave pasttimes is looking for the plane to see if/when it passes over. "Wave kids!" Unfortunately, it's getting too dark for planespotting, we track the plane online instead.
8:30pm- Both the yougest girls are in bed. We have an 'iffy' for Grace tomorrow for school, she was out sick today with the sniffles; so... not sure, but she was active today, so I hope to get her to school so I can get a 2 hour break in the morning. Meanwhile, I get a well deserved break and will sit down with my DVR'd episodes of Ghost Hunters!

Diary of a Mad Week- Thurs

5:30am- So, it's early but not the middle of the night. I woke up to Liv crying, or was it laughing? I also thought I heard Dora say "Come on, vamanos", but between Dora playing in my head regardless and having the idea of other worldly voices planted in my head last night by Ghost Hunters, I'm just not sure. Yup she was laughing, yup it was Dora, from a book under the covers (they ALL make noise nowadays!). I could get up, but I still I force Liv to stay in bed with me. She waits it out like a prisoner waiting for her jailer to nod off. She turned on the computer and turned on and off the lights so fast, I felt like doing the Hustle. I gave in around 6:30.

8:15 am- I had plenty of time today, since Aly was not going on the bus and since Grace is still running like a faucet, she's home... at least I didn't have to get her ready. So much for 2 hours free time, though. It's not like I'm trying to get anything done. But it would have been nice to do a couple of loads of laundry without having to worry whether Grace is going through the cat door.

2:15pm- Grace has been trying to escape all day. She's reasoning out how to get to her nemesis...the door chain. It reminds me of that scene in Jurassic Park where the game warden guy is explaining about how the raptors are testing the fences for weaknesses. She had tried smaller boxes, step stools; finally I hear her grunting and groaning. After the grunting stops I see that she has a huge heavy box in front of the door; and her goal was achieved. She was messing with the chain to see how it can be removed. She was still two steps from freedom (she still had to move the big heavy box out of the way), but I shut her down and distracted her as much as I could. Next thing will have to be an invisible Grace-fence.

5:30pm- victory as I get a BM out of Liv. I would have been satisfied if I never saw it again, but that ain't the way life works. It seems there had been no tremors since Mt St Helens erupted on Monday. I went with 'ol reliable...watermelon...

10:30pm- I've been fighting with doing my other job my (not so) real job today, and I'm still doing it. I've fixing 700 orders throughout the day; connection to the network crashing every 15 minutes, my daughters pulling on me for the other 14. That's the only difference between me and Lin: I have this other mistress that pays our bills that I have to pay attention to. Sometimes I feel like I give my parenting job second shrift; but I try not to.

Today was tougher, partly because of the job, partly because it was my first REAL day by myself. Friday's gonna be easier...I hope anyway

Diary of a Mad Week- Friday

6:00am- Better Liv, but still not great. I push it to 6:45, but she makes sure I don't even get an extra 4 winks...

9:10am- I'm left at the curb with Grace and NO bus. The bus driver and I had a confusing discussion about who would be on and not on the bus (Liv had no school today and Grace had been out sick for two, so our wires got crossed). I can't blame the bus driver, I have left her beeping at the curb for 5 minutes; I forget to tell her when Grace is not going to be on the bus; I physically pinned a note on my chest once to make sure I told her (she's STILL talking about that one). So, my 10 minutes to get Liv ready and out the door with Jason at 9:15 turns into 10 seconds of scrambling to get Liv dressed while Grace screams in confusion as to why I dragged her back in the house. I drop off Jay and swing over to the other school and drop Grace off.

9:35am- Livie's a good sport through the entire escapade so I decide to reward her (and me) with a trip to Deep Cut Gardens, a local county park. Beautiful day, but halfway through, I realize that both Liv's getting too big and I'm getting too weak to haul her onto my shoulders anymore. I have a torn rotator cuff. so my shoulder just don't GO that way anymore. I finally get her up there, but halfway up a steep hill, I find my weight and hers too much. "Sorry, girlie, you're hooffin it with me!". We still had fun despite my handicap.

10:00pm- day went off without a hi...tc....h...well, truth be told this is EXHAUSTING, even when you limit yourself to the bare survival stuff. Me and Liv have been struggling with the potty thing, she went in MY bed and Jason's (shhh, don't tell him, he came to me and said "I think I've been pee-ing in my sleep, cuz my bed over here is wet."). I washed my sheets, moved the pillowcase from Grace's bed over to mine, moved one of Livie's over to Grace's, found only the Jessie from 'Toy Story' sheets were clean, couldn't put them on Jason's bed, so switched them off onto Liv's mattress and took her unisex sheets for Jason's bed ('every thing's a contingency' is the phrase we always use) .
I let the boys out until 9:30 with the other 5 boys in the neighborhood to play Manhunt (ringalario?). It's almost summer again...remember those days? All the Benny's are gonna invade my sweet coastline again, happy Memorial Day weekend...

Diary of a (Not So) Mad Week- Saturday

As the title implies, Saturday has been uneventful and even somewhat wonderful. You'll notice no times today, because there IS no schedule, this Saturday is appointment-free. Normally Liv goes to a Sat. program at 8:30, Grace goes to same at 10, Liv picked up at 10:30, Grace at 12. Thank those who sacrificed everything that I did not have to do THAT today!

Instead, we took it as it came. I decided that we would ALL go the the Monmouth Battlefield State Park, I talked the boys into being responsible for one of the girls. Pretty good layout, it's basically wide open farmland so even if the girls got too far ahead or behind, where were they going to go? The boys did a little 'who's holdin' Livie's hand THIS 5 minutes', but all were happy...except when we told Grace it was time to go. If it ain't HER idea...there's gonna be a fight. Hey, I got up at 6:45...I had plenty of fight in me.

Liv was amazingly playful in the evening. She kept changing the TV station to 'static' and I'd tickle her in retribution till she was giggly-sore...then she's get up and do it again. Me, her and Jay went at this game for a full 15 minutes. A real good time.

OK, 24+ more hours of solo work and the girls come home. I think I'm actually gonna make it, and I may actually be better rather than worse for the wear...

Diary of a Mad New Week- Paying the Piper

Home stretch, the girls plane is due in around 11 pm which means they should be home somewhere just after unconsciousness. There are no serious horror shows in any rooms, I've seen it worse. I think the main issue now is we have to 'catch up' after all this fun and frolic. I've only done 7 or 8 loads of laundry during the 5 days, most of that was 'survival loads' of sheets and towels. If we don't average 2 loads a day, the piles creep up like a slow leak in the basement. Stocks are low, so a trip to the market is inevitable tomorrow. We also need to get prepped for the school week. If the older three are astute, they will realize there are Memorial Day parades around the area, and try to add that to the docket. Monthly cardboard recycling is Wednesday morning, seems like nothing, but with the amount of online purchasing we do, it's easily an hour job to bundle them.

We do project post mortems at work to see what the 'key learnings' are. So first, just like at work, attention to detail and a preventative approach will save you in the long run. I paid for it more than once this week taking the shortcut, rolling the dice and coming up snake eyes. Next, I'm not kidding myself, had this been a REAL week (we missed 4-6 therapy sessions during Wed-Sat timeframe), I would look like silly putty dripping off a seat right now. While I can DO this, I can't do it well. Last, of course, I have to recognize the master, the guru, the zen Buddhist of this universe, the one who can not only handle the extras that I did not, but still manage to get just a little bit ahead of the game by the end of the day. Baby, you're the greatest! Together, we're better than Lewis and Clark (or is that Martin and Lewis)!


And now, some outtakes from the week:

Grace, after opening the gate and starting down the stairs "Come on Livie, Come on!" She never addresses Liv directly

Grace again after having two pieces of a tub toy separate in the water, quite normal but she cries out "We need Sticky Tape!" (of course, from a Dora episode).

Aly, after being asked to watch the girls so that I could clean up one of the worst natural disasters in the living room Monday "Daaad, me and Dillan wanted to PLAY!"

"I'll do it." Dillan immediately after Aly once he realized the scope and gravity of the situation...

"Ha ha Ha!" Liv seemingly recognizing the irony of the situation at 5:30 am Thursday when the Dora book called out "Come on, Vamanos!"

"I'll have two Fla-vor-Ices instead" Jason after taking a look at the living room after being offered a big bowl of ice cream with Magic Shell and sprinkles if he helped clean up.

Yea! She's Disabled!

It's a bittersweet triumph for a parent of an autistic child. "Your child has been approved." "Your child has been diagnosed." "Your child has been accepted." "Your child IS on the spectrum."

Our latest 'affirmation' was through our state's DDD, confirming Grace was indeed eligible for services. YEA! more money for the coffers, more availability for services in the future. It's indeed a good thing. But, there's always that voice in the back of your head hoping that they'll say "I'm sorry, but you daughter does not appear to be on the spectrum, she's a little quirky, but we don't feel she's going to need any services, especially in the future." So, after we say "YESSS, she's disabled" we think "Did I just say that?"

In our journey, we've always known well before the experts confirmed it, so we were never surprised with the news. Liv, we had seen the signs around 18 months; Linda did research on the internet, she had me and my mother in law in denial for a couple of weeks before we realized Linda wasn't just matching symptoms to disorder. By the time we had the proclamation from the pediatric neurologist a few month later, it was anti-climatic and more a rubber stamp to our conclusions. We always had that hope (maybe hope is not the right work, maybe it's outrageous fantasy) that he'd say "No, your grossly mistaken, she's just going through a non-talking, stimming, anti-social, no eye contact phase, she'll grow out of it." (Wow that sounds like a couple of pediatricians we saw!)

Grace was at around 13 months...we weren't sure she had enough symptoms to warrant a diagnosis. We weren't sure because we hadn't seen another kid develop in almost 4 years; we had autism on the brain, so we weren't positive we could trust our judgement. We were sure, but we weren't sure we were sure. She was one of those kids that could have easily been missed by the lay doctor; but with a trained eye, we showed the early intervention folks exactly what we saw and they confirmed that they saw the issues too.

But because Grace's skills are so great and her autistic tendencies more subtle, she's been a fight with the people with lots of skepticism and funding. Her school system finally gave in a few months ago and we're moving her to an autistic program starting in the summer. DDD had to have an in-person evaluation to see for themselves. She 'performed' as well as we could hope. She's always a little nervous in new situations, and she'll show it by trying to eat inappropriate things (she tried to eat a tack and a paper clip), try to get out of the room (he had to barricade the doors) and generally make a lot of ruckus. The 'poop' in her pants was ('scuse the bad visual) icing on the cake. Where else would you think to yourself "Thank GOD, she acted up and was completely out of control in a state office!"

She's not nearly that bad at home though. It's an interesting dichotomy: The fantasy of trying to get her to perform poorly and the reality of better behavior at home, vs the typical version where the fantasy is them being perfect in office and digressing at home. I've long since given up on making sense of my life though; way past dreaming of my girls as something they are not and far away from lamenting the things that go along with. I'm just glad our kids are getting what they need...

Where Others Run the Other Way

Lemme start this post by saying this post should not minimize the legitimate heroism of fire departments around the world. Along with the other professions of the armed forces and police officers, theirs is the heroism and sacrifice, that being said, let's get to business.

I remind those with weak conthitutions to refrain from reading further.


It all started with one word today, one word that most certainly send terror into the hearts of all singles and DINKs (dual income no kids) out there. But words like this are second nature in our profession. The profession: parenthood; the word: boogie.

Yes, it all started in the midst of a conversation between my wife and her mother, Grace came in, index finger extended, and told mommy "boogie". Now, most would not exactly know what was transpiring here, unless you are part of the 'profession'. Perhaps you'd think she was an early imitator of John Travolta preparing for the pose in Saturday Night Fever.

There was something on the end of that finger, and it was passed to mommy without a second glance, flinch or even an "OH MY GOD...I'M GOING TO BE SICK". Of course, the boogie had an 'R'...
So, "what" you say "would motivate a person to accept things from another human that would cause others to run to their therapist?" I tell you the name: parenthood.

A parent is fearless in the face of all that is excreted from their offspring. From the tiniest sleeper to the largest vomit ever recorded, a parent will always be running TOWARD that danger. Countless times, when the dark stain of wetness appears on the lower portion of the buttocks, we're there pealing back the layers to repair the 'leak'. When the cry from the upper bunk of "I feel sick" comes; who is there to take the shower? When the spill of a major glass of milk or food or whatever may befall a tabletop or carpeting, the parent is there to take it and make it alright. The cuts and bruises, major and minor; the late night trips to the emergency room and the weekends at the doctors and CVS; we'll be there to make it right.

We're there at every turn, not only to make it right; but to make it better. All those projects cleverly disguised as 'third grade art projects' that are more challenges to parents to make something inspiring out of recycled material and make you THINK HE thought it up. So many room clean-ups that would have taken us 30 minutes, but children struggle to do in 1/2 a day.

We are there, protecting the under 18 humanity from certain failure, malnutrition and certain death. Making sure that the homework is done; the bodily odor is not there; that the basic needs of food, clothing and shelter are met. We are the few, the proud, the parents...




I could not figure out how to fit this into the post, but one of the things that parents have to instill in their children is that boogers can't be chewsers...words to live by

The Dance

Our local school had a 'dance' last Friday, to give the kids a chance to socialize. You'd think that a fruitless effort for an autistic school, with socialization being one of the 'big three' symptoms. I was pleasantly surprised at how well it went and how well we handled it with all seven of us. Linda and I assigned ourselves one girl each, and employed the other three for various duties like getting snacks, bidding on auction items etc.

Nothing real fancy, just a few balloons in the local school cafeteria; a guy with a guitar; a girl with a good voice and a decent backing track. They had lots of GF/CF snacks, which was pleasantly surprising and very few meltdowns from anyone. It certainly went better than our last excursion to a spaghetti dinner; maybe it was because we were all 'family' and THIS event was designed and run by the family.

Well we lost the bidding war for the artwork from class 1. we had to explain to Aly that this guy was NOT going to stop at $60, since his kid was in the class too and he was their only child. We took home several blow up musical instruments, which Grace was hording throughout the evening.

What struck me most though was getting Dillan and Jason to leave. Dillan had made a new friend. His new friend had said "I'll see you around." I made special effort to say the same. Back at the car, Dillan was speculating whether he went to Alyson's middle school, since he was in seventh grade. He couldn't quite grasp why this boy was interested in being Dillan's friend since he was 3 whole grades ahead. Linda and I had understood; Linda and I had seen the licking stim he had and the marks on the side of his face from it. Dillan and Jason honestly didn't 'get it'. I wasn't sure if I was out of line explaining it to them to say that he was probably an aspie. I was surprised to realize that they didn't know what that was, so I explained that he was just like them, but had a few things, like stimming, that made him a little different. Dillan is probably the most accepting kid on the planet, for various reasons, and this time was no exception; he just brushed it off.
I shoulda seen if this kid's parents wanted to set up a play date or something. He really seemed like he was very social, but he might have needed friends to practice on. He probably would have trouble trying to fit into our neighborhood 'gang' (we have 8 boys within a one block range and 5 year age range), but he might have liked a smaller group of just Dillan and Jason.

And apropo to nothing in this post except my life in general, here's the lyrics to Garth Brooks The Dance:

Looking back on the memory of

The dance we shared 'neath the stars above

For a moment all the world was right

How could I have known that you'd ever say goodbye

And now I'm glad I didn't know

The way it all would end the way it all would go

Our lives are better left to chance I could have missed the pain

But I'd have had to miss the dance

Holding you I held everything

For a moment wasn't I a king

But if I'd only known how the king would fall

Hey who's to say you know I might have changed it all

And now I'm glad I didn't know

The way it all would end the way it all would go

Our lives are better left to chance I could have missed the pain

But I'd have had to miss the dance

Yes my life is better left to chance

I could have missed the pain but I'd have had to miss the dance

The End of an Era

I know that growing up is all part of 'growin up', but certain things just tug at your nostalgic heart strings, like no training wheels on a bike, going to the potty for the first time, or going off to kindergarden. If Linda and I tread very lightly over the next few days, Grace will pass us through another right of passage.

It all started rather innocently enough, mom/Linda first diagnosed with strep throat 10 days ago, then last week, we check Liv and Grace's throats and we get one hit and one possible recovery (meaning Linda may have gotten it from Liv). Livie had been night waking the week before and it could have possibly been a sore throat. Doctors orders though, all items that currently reside or have re-sodded in their mouths has to go. Toothbrushes replaced; the boo boo buddies collection, one of Liv's stimmy 'guilty pleasures', out with the trash. But the most significant pieces of trash were Gracie's Nuks (pronounced like 'book'). Yea, she's comin up on 4 and we never took them away; yet another willful child taking advantage of overwrought, passive aggressive parents.

We first had a nookie roundup where oldest three were offered a 25 cent a nuk bounty. $6.00 plus later (Alyson of course grabbing the lion's share) we were nukless, save for 3 that we had on the side. Linda had the inspiration of de-nukifying the youngest. We had lots of trouble with Jason when he went nuk-free, and we were set for the battle of 2008. But the day went off without a hitch. "Oh yea, well wait 'till bedtime, we're going to have to give in if she starts screaming", Linda was already beginning to waver and this coup was almost completely bloodless.

I put her in bed, Grace made a well-practiced sweep of the bottom area of her bed rail to find nothing. "Nookie?", barely a hint of desperation in her voice. She rolled over grabbed her two favorite blankies, and whined softly "nookie" over the monitor protesting for maybe 5 minutes. I could tell that Linda was waiting for the loud wail, but it never came, she was out in 5 minutes...success! "You wanna just bust in there and shove a nuk in her mouth, don't you?" I said. I got a nod and one of those my-baby's-not-a-baby-anymore looks.

Oh, I'm probably jinxing it by posting, but it looks as if the nuk day's are over, one of the easier battles we have won...

PS.

I realize the potential for using the word 'nookie' may get me in trouble, especially on Google with late night toothless fiends looking for inventive terms for sex. We would occasionally get looks in public if we asked various of our little children if they wanted nookie, but hey, dialects are dialects...

Conspiracy

I have to continue the innuendo, but no, this is not a blog about governments' and the medical industry in cahoots, it's about the random but seemingly intelligent way that life tries to get in the way of life. I understand that we just perceive the randomness as having pattern and we really don't always lose our keys when we're late, it has just got to me lately.

The first factor in this story is that it is Autism Awareness month. Everyone is planning their events, symposiums, plays, walks, concerts, spaghetti dinners in April. Us being homebodies, we don't get out more than once a month, so to expect all to go without a hitch this month would have been the true conspiracy.

My first 'mmmbummer' moment was realizing we were going to miss the POAC walk in NJ this month. POAC's one of my fave organizations, but we had to support our local school's spaghetti dinner and, in a rare moment of insanity, we thought that it would be 'fun' to bring the whole 7 of us. After a Grace meltdown, bad pasta and losing at 50/50 tickets, we realized we were not going to last the full 3 hours and, abandoning all hope of winning any of the gift baskets, we went home. We also had a night waking that night, so Saturday we were not getting moving for anything but a major illness.

Now, the highlight of the month was technically not an autism thing, but it related heavily to our situation. Linda had booked to be in a conference in Central Jersey for a day-long workshop on Wrightslaw, headed by the Wrights themselves. At least I'm pretty sure it was the Wrightslaw Wrights and I won't even get into the Right's right to rewrite the Wright's writing of Wrights Law. Anyway, from what they advertised, it would have been a great way to get our mindset for the IEP season coming up in June.

In any event, the day before she was set to go, she gets this awful sore throat. I'm off that day mercifully, so I jump in and take over some of the things she has planned and try and get her to the doctor. Word comes back...Strep. Trooper that she is, she thinks if she can rest up, she'll muddle through the workshop. I let her get some extra rest during the day, but night comes and we have a double wakeup a 3 in the morning, I took the brunt, but the damage was done, she's shot and gives up on going. Today, we take the two girls and find out Grace has it too and Livie may have had it a week ago (she had been selectively holding food in her mouth we thought it was a new behavior, my poor baby). We are infested, but at least we now have a reason why the girls have been getting up at night.

We'll not be attending the POAC play Day After Day tomorrow in Red Bank. Now that's a luxury that we could not afford this month, we've already worn out our babysitters for the month.

Kinda hoping this month would end: too much to do, too much to look forward to and too much hope to dash! I'm getting a little tired of wearing my autism golf shirts, although I did get someone ask me about autism, so I got to get on my soapbox while at a business meeting in Baltimore. I'll just be glad to get to May, where we can settle into warmer weather and a somewhat normal life again. Although, I think I'm flying solo for a weekend in May; Linda's going somewhere with her mom and Aly!

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