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

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...