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

Autism Awareness Month - WhatdoIdo?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Command Performance

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

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

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

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

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

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

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

Not to be Outdone (subtitle: Timing is Everything)

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

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

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

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

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

The Ugly Green-Eyed Monster Rears Her Beautiful Head

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

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

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

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

Break in the Action

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

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

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

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


Misc:

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

The Great Escape

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

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

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

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

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

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

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

The Dell

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

Jersey Giants!

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

Work/Life Balance

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

Nexium Tie

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

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

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

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

Norm Crosby would be proud of us...

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

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


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


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


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


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


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


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


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


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


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


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


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


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


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





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

2008...The Year of Sleep Deprivation

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

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

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

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

How do you call in sick from life?