A Crazy Disorganized Mess of a Day..

it is becoming... (having been gone this weekend resulted in all kinds of things not being prepared like I usually do for the week to come). And I am already so stressed out that I am literally vibrating (I have a whole new appreciation for how Salamander feels when anxiety and worry overwhelm him...). Time to go take a long shower to get my head cleared out and then I'll tackle all that needs taking care of one by one by one by one by one by one by one by.. (you get the drift)

I am going to go MIA until much much later (today and maybe even tomorrow).


P.S. Need to get one thing 'off my chest' as right now THAT is adding hugely to my stress levels. If I hear either of my boys go one more time "But daddy said he was going to do X with me.", or "But daddy said we were going to go to Y.", I am going to SCREAM!!! I am NOT frustrated with the boys as they obviously can't help feeling disappointed when commitments or promises made are not being followed up on. I am just getting so fed up with having to explain or apologize.... I've tried bringing these issues up (and believe me I do try very hard to be nice, non confrontational and neutral when trying to discuss things; no use of "You did not do..." or "You are not doing.." or "You make them/me feel like ..." - very different from the way I let things 'rip' here.. hey, this is MY blog and this is the one place where I don't want to have to be all PC). But no matter how I try to raise things, I run smack into this huge wall of 'defensiveness'. I can't even get half a sentence out of my mouth and it's "Well, I never said that.", or "I never made that promise.", or, "Well, the plans changed. I'll do X or Y at some point."

Sigh.. as I said, I am sick and tired of having to explain or apologize for things that are not of my doing (first of all, I don't make promises I don't have any intent of keeping. And if I have to break a promise, the boys KNOW I'll explain and apologize and that I had little control over the circumstances that led to me having to break a promise). I guess I must be the 'odd duck'.. and I am seriously wondering if, by doing what -I- am doing around promises made and follow through, I am setting the bar for the boys' expectations too high? Maybe other people randomly make promises to their kids too and then don't keep em and think nothing of it??? However, taking that approach just feels so 'wrong' to me and what is that going to do to the trust the other parties may have in you??? But maybe I am just expecting too much ...

And We're Back...

Boys are wiped, they actually BOTH conked out for about 25 minutes on the ride back. They had such a great time, they really didn't want to leave. And as I was checking out, Potatey piped up: "Mom, can you make sure they keep the *room* for us so we can come back in a few days?" LOL I'll see if I can swing another trip later this summer... I would go for more days though.. doing an overnite thing made for a hectic trip... (I'll have to check all my unused airline mileage accounts.. maybe something can be finagled..).

Salamander is definitely a bit dehydrated (so am I.. I know this sounds funny.. we've been in the water for hours on end so how can you get dehydrated while spending all that time in water? Well, trust me you can.. ) and both boys have a little bit of a 'chlorine/asthma' cough.. But that can be taken care off.

More about their actual adventures later..

Hardest thing for me? Nope, not all the preparing and the *continuing to work my a$$ off* while we were away (as really, this trip didn't have any space for a break for ME). No, it was tripping over all those MEN at the water park who were so obviously having a BLAST being with their kids (from eeny teeny weeny to teenagers). Ah well, I'll just have to get over that...

Boys Are Having a Blast...

Real quick, as I want/need to make the boys their breakfast and then back to the park we go..

Salamander's eyes went big as saucers once we entered the water park.. especially when he discovered the gargantuan water slide wrapping itself all the way around the outside of the building before emptying out in a grotto like structure. "Can I Mom, please, can I?" "Yes, you can." And off he went.. and I think I saw him three times in the entire time we were there yesterday. He was off doing his thing, connecting with other, never met before, kids... yesterday, unless you knew you would never have been able to tell about Salamander's "background".
I'll write more that when I have more time.

It took Potatey a while to get comfortable (definitely some sensory issues and anxiety in that on). But once he got comfortable (and he only wanted to be in the kiddie splash park area... another reason why I *had to let Salamander go*, as there was no way he would have stayed 'with the babies' LOL), Potatey too had a great time. He swam, he went with his head under water, he splashed, he rode the water slides several times... Knowing Potatey he'll be all over the place today (he's of the 'check things out first, dive in all the way the second time, be absolutely *perfect* at it the third time' inclination).

Will write more when we get back home. We have been able to extend our check-out time to 2 pm (Thank you wonderful folks at the hotel/resort.... we have an awesome suite with a small kitchen area with a microwave and a refrigerator, and now the flexibility around check out.. I'll write a thank you letter which I will post here... ), so we'll go *romp* for a few more hours, then baths, lunch and back home...

Once Upon a Time..

Need to put one thing 'out there' (especially as I have no idea yet where the writing below is going to take me).. The past 9 or so years have been really difficult, and now that I am starting to look back a bit, I don't really now how I've gotten through some of them (especially 2005, 2006 and 2007 were the years of the Great Disaster Stack-Ups). Shear pigheadedness I guess.. I also know that I have several more tough years ahead of me (no, this is not Doomsday thinking.. this is me being a realist)

One thing I will never regret.. having my two precious boys....


I started writing this a while ago.. Figured it was 'time' to put this up in light of some of the earlier discussions... It's not finished, more to come..

Once Upon a Time..

There was a girl. A bright girl, a happy girl, a girl that was used to working HARD for what she wanted and not taking "NO" for an answer. The girl had friends, not many many many (like some girls), but enough to feel like she was part of something. The girl's friends were mostly guy friends (girl had a few girl friends, but never really related that well to the *frilly frippy crowd*) The girl cared deeply for her friends and they did for her.

The girl graduated from High School, and fell deeply in love for the first time (there had been boyfriends before, but nothing serious.. soon after getting into boyfriend/girlfriend territory, boyfriend would *claim* girl too much, girl would feel suffocated, pull away and end up back with her friends - who all understood her need for emotional space; in fact they were all exactly like that). Girl went to University in a town away from her hometown and Boy Friend followed her to be with her. And all was grand.

It was during her 2nd year at University that girl realized she had *paired up* for all the wrong reasons (as all her High School friends had SOs, and she felt lonely), and that Boy Friend, while putting up a great act, really didn't care too much for Girl's independent spirit and *stubborn ways*. Girl realized that this relationship was going down a path that was NOT a healthy one and she tried to end it. Unfortunately, Boy Friend wasn't willing to accept that things were over, and things turned ugly, very ugly. Very, very ugly....

Girl had made new friends in University (again mostly guys), and thanks to these friends in University, girl got herself out of the mess she was in, she moved on, she was happy again, she started to thrive.

Girl promised her circle of friends that she was going to take the time she needed to really figure out what she wanted.. out of life.. out of a relationship..

Then Girl met someone who seemed so so different from all the Boys she had been with before. And Girl fell for it; hook, line and sinker. Girl broke her promise to her friends. She didn't take the time to figure out what she really wanted... nor did she really have a very good idea what the new Boy was all about, and what, deep down in her core, SHE was all about....

TO BE CONTINUED

Off to Play...(or maybe not...)

With my boys for the weekend.... Catch ya on the other end.... (unless I can 'hook' into the web from the hotel and blog away from there..)


Added at 7.45 am: Just got a call letting me know that there are, yet, another set of last minute changes to the arrangements at the hotel. I know I didn't get into the 'how did we end up in this place' story before, but let's just say that the arrangements themselves, who is taking the boys where and when, have undergone drastic changes in the last two weeks or so. So here's the call: "When you check in, you need to request the keys for rooms X, and Y, as those rooms have the special keys to the water park associated with them. But those are not the rooms you and the boys will be staying in, you need to pass the actual room keys for rooms X and Y on to person so and so (whom I have never met before in my life, and nobody can tell me when this person so and so will be arriving at the hotel, nor can anybody seem to figure out what would be a good meeting place). Now you and the boys will be staying in suite A and B, so you need to request the keys for that suite as well, at the same time you are requesting the keys for rooms X and Y. Now the suite is under the name of so and so, and rooms X and Y are under the name of so and so. Did you get all of that?"

Uhm.. no.. I did NOT get all of that... I've been up since 5 am doing cooking, last minute packing, packing coolers with food, sorting the boys supplements, and Potatey has been up with me since 5.30 am 'to help'. Potatey, when he's up and awake, asks questions NON STOP. I was up until midnight last night taking care of some work stuff, so my processing speed is not too good. So shoot me, but I got *testy* with the person making all these last minute changes (granted, the suite will be very nice... ). I am going to be traveling with two kids with challenges, and both have been obsessing pretty much non stop since Friday morning about the water park. So once we get to our destination, all the boys are going to want to do is get in their swim suits and run into the water park. So how well do you think it'll go over with them that they have to wait while I straighten out the, complicated, room/water park access arrangements above? Yup, meltdown and tantrums waiting to happen..

Why oh why not associate the water park keys with the suite, and add my name to the suite reservation??? (and the other person who needs the room keys to rooms X and Y can sort THAT out directly through the front desk instead of having to come look for me)

Yes, I am VERY frustrated. Am I overreacting? Tell me if I am...

My thing is my life is complicated, traveling with the boys is complicated, going to unfamiliar places with the boys is complicated. Is it that much to ask that things are kept relatively easy and straight forward? Once again, if you want to have something done right, you got to do it yourself...

I am aware of the fact that, under *normal* circumstances I would have been able to adjust to and deal with the 'complicated room situation' described above without missing a beat. Let's just say that all the frustrations around the *ever changing arrangements and situations* with this trip/event came to a boiling point and the lid blew off my temper.

Ah well, back to cooking, packing and supplement mixing. Once we're all in the car (it's about an hour drive), THEN I'll start making some phone calls to get this all sorted..

8:35 AM. ANOTHER SET OF CHANGES. Sigh.
And an "Oh by the way, there is an age limit for kids to be able to get on the bigger, more exciting stuff. They have to be 6." Well, I guess that means that Potatey is going to have an early birthday... there is no way that Salamander is going to go on the bigger, crazier stuff without me. And there is no way I'm leaving Potatey behind/alone.

Exactly... and Diddo....

Landed here through Michelle O'Neill's blog.

And all I can say is that I 'get' everything this lady wrote (and then some). And all I have to add to all the wonderful comments others have already left is "Exactly... and Diddo".

[this warrior momma could really use a break too - hey Sis, if/when you read this, we need to seriously talk about our 'escape plans']

Oh Crap...

Looks like the website that's behind one of my widgets crashed last nite.. My little 'who's visiting' chart went completely blank!!! So I lost all the little *hearts* that showed that people are actually reading what I write (my *needy* interpretation, see also previous post, 'oh, people actually do care about me and my boys???').

So that being said, send me some *hearts* for my chart will ya? I feel kinda lonely...

My Own Worst Enemy

I frequently am...

[I can hear those of you that know me well go: "And your point is?" LOL ]

Most of what I've got going for me in my professional career centers around my reputation. And my reputation is solid. It's more than solid, it's excellent (and that's not me bragging.. I'll let the fact that my entire business is based on word of mouth/repeat business speak for itself). And I worked very hard to get that reputation, and I worked even harder to maintain that reputation during all the craziness over the past 4 years (my clients know that if the proverbial sh#t hits the fan here during business hours and I've got to disappear, I'll make up for it somehow)

So despite people telling me that I am very good at what I do (that's the kind of relationship I have with my clients.. they tell me when I do well, and they tell me when I f#ck up... ), despite the fact that my core clients will gladly recommend me to their business contacts (but tend not to do so too eagerly as they get kind of 'possessive' when it comes to my time.. LOL), and despite the fact that one of the top guys in my field even as recently as yesterday told me that he wished he could get me involved in projects X, Y and Z and that I could be involved but that it would all depend on MY availability, I keep thinking that I'm "no good". Especially when a deadline is looming and I have trouble getting a particular tricky piece of a project to come together.

It's happening again .... part of the problem is that I have very high expectations of myself. And when a particular piece just doesn't want to come together, I tend to take that very personal and think it's because "I've lost my touch". Instead of acknowledging that this particular piece was simply a b#tch to put together.

I've been "sweating bullets" over this last piece that's needed to get this project to completion. And as we're under a tight deadline (in fact, we're running a few days late already) and we now must get this project done and over with, I need to get into 'good enough is good enough' mode (and if we get questions after the project has been reviewed, so be it).

So I produced part of the missing piece this afternoon, am working on the last bit tonight. And I absolutely HATE what I wrote. And I really want to completely rewrite it. But as we're running out of time, I sent off what I had for review by my clients.

And dreaded opening up my email tonite as I was sure that the clients were going to hate it too.

Imagine my surprise and disbelief when I only got very minor comments. Apparently what I wrote is not so bad at all....(but here I am sitting thinking that the reason I only got minor comments is because people didn't really read what I wrote as we're all in a rush to get this wrapped up).

So why do I do this? Why am I so convinced (and it mostly happens in the endgame of a project) that I'm a total screw up when my clients think I'm doing a bang up job? What am I getting out of thinking that way? Where is that *insecurity* coming from? Especially as, when I do drop *down* to 'good enough is good enough', the end product is still pretty damn good to anybody else's standards?

Granted, this has been a tough few weeks and this could just be sleep deprivation doing the talking.. But there are other areas of my life where I do the same thing (not when it comes to my boys though.. although I do frequently feel that there is more I can do, more I should be doing for Salamander....). Is this battle fatigue creeping in???

Why, why, why? I need to explore this more, and then STOP DOING IT. It's a senseless waste of time and energy....

Away We Will Go...

So this is where the boys and I will be for part of Saturday and Sunday.

The boys are super excited, they are really looking forward to romping as long as they possibly can get away with in the Water Park.

Me? I'm a bit apprehensive...the hotel accommodations themselves do NOT have any cooking facilities, not even a microwave (I have requested a refrigerator). Obviously I'll have to bring all of the boys foods and drinks with me anyway. But not being able to heat anything up will mean I have to get creative. Ah well, we'll have breakfast at home on Saturday morning, and we'll be back for dinner on Sunday evening, so really all I have to worry about is Saturday lunch, Saturday dinner, Sunday breakfast and Sunday lunch. And of course I'll have to schlepp all of the boys' supplements with me. And yes, I'm a bit worried about what a prolonged exposure to an indoor, most likely heavily chlorinated, pool environment will do to their transulphuration pathways. And yes, I'm a bit worried about how the boys will do sleeping in a different environment (it's not a given that they'll just go right off to sleep). And yes, I'm a bit worried about how Salamander will transition (new environment, different routine, sensory overload, etc).

But other than that, I'm not worrying about a thing! LOL

So how did we end up here? Now that's a long and complicated story, and a story I really don't want to get into....

I need to practice positive thinking: everything will go just fine, the boys will have a great time and we will not run into any food or overexposure to chlorine issues.

OOOOOHHHHHHMMMMMMM

On The Topic Of Lyme...

I need to clarify a few things.. my previous Tick post and the updates were written in a hurry, as I was doing my usual multi task thing.

Yes, I realize that Lyme Disease is not viral in origin. It's caused by a microbacteria called Borrelia burgdorferi. So when I talked about beefing up Salamander's anti-viral supports I did not mean to imply that OLE, Melissa, Moducare, Elderberry would be able to help address a B. burgdorferi problem. What I should have said is that these supplements are immune system boosters, and you need a well working immune system to fight off critters of any type. In addition, it's not unheard of in our kids that while the immune system is off fighting critters of one particular type, critters of another type are seeing an opportunity to throw a party. All-round support (for bacterial, viral, parasites) needs to be considered.

Also, please bare in mind, I am not licensed MD or ND. What I write about is not to be construed as medical advise. I'm just an AM (Autism Mom) writing about stuff that goes on in my house. And the boys are under the care of several very knowledgeable and wonderful practitioners.

Another thing that was pointed out to me is that you cannot have a 'touch of Lyme'. It's like being pregnant, either you have Lyme or you don't. Point taken. What I was trying to communicate with my 'touch of Lyme' comment is that Salamander may have been exposed to B. burgdorferi. And that his immune system may actually be holding its own in fighting off the critter (if he's been exposed, which is not a definite), but that he may need a little extra help in giving the critter the K.O punch. Hence me looking into the Tick RNA, Cat's Claw, IMF2 etc.

I don't know enough about Lyme Disease, but with any other disease of bacterial origin, the bacteria needs to replicate to a certain level before it becomes a problem (as the immune system becomes overwhelmed). So while Salamander may have some B. burgdorferi in his system, I don't think they have replicated (yet) to the point of exceeding the 'and now we have Lyme Disease' treshhold (and that's where then also the difficulties around testing come in ... to be able to detect B. burgdorferi or what ever 'stuff' these critters 'spit out', you need to have enough critters running around doing their thing).

Regardless, I will keep a very very close eye on Salamander. And if I see anything that is even remotely suggestive of him developing Lyme Disease, off to the doctor we go for a full work up (IgA/IgM/IgG, Western Blot, Lyme Dot Blot, PCR, the works..). And we'll look for the other tick borne diseases at the same time in that case (here's a website with great information).

Ticks Part II

UPDATE: Feedback I am getting indicates that it makes sense to get some prophylaxis on board: Dr. Amy's Tick RNA has been mentioned, as well as Cat's Claw, IMF2, Lyme nosodes. I got to research all of these a bit more. Regardless, I am going to have to beef up Salamander's anti-viral supports (such as Moducare, OLE, Elderberry, Melissa...) ... which of course will add to the current detox... Oh joy..

UPDATE 2: Started Salamander on OLE tonite (I took it myself for a while as part of a comprehensive antiviral program to deal with my chronic EBV, and oh boy, that stuff is POWERFUL). I probably will give it to him either every other nite or every third nite. Also ordered the Tick RNA and Cat's Claw. Will keep you all posted (and some positive energy please? We do NOT need Lyme on top of everything else...)


Remember when I posted about having to pull a tick of Salamander??

Well, Salamander had a CST (Craniosacral Therapy) appointment today. He hasn't been feeling entirely right as of late. I figured detox, end of school year, few other things...

As the CST is working on Salamander she goes: "Has he had a tick bite?" My jaw dropped on the floor, as I hadn't told her.

So we talked through Salamander's current physical difficulties (the metabolic crash, the bone pains, low energy, fatigued, muscle stiffness, the vomiting a couple of days ago) and yes, she's right, there could be a 'touch of Lyme' in the mixture (and then again, there are also several other explanations for these symptoms).

I have to do a little research and then I have some decisions to make on what to do...Do I assume 'a touch of Lyme' and treat for it, or do I keep an eye on things for a little longer (I do NOT want for Salamander to end up with a chronic Lyme infection...)

CRAP!!!

The End of the "Dark Age of Autism"????

Call me cynical, but when I read stories like this, this and this (I vividly remember the comments from Salamander's ex-pediatrician in response to my announcement that I was going to pull all artificial junk from his diet to see if it would make any difference), I can't help but thinking that we're still smack dab in the middle of the Dark Ages...

And to those a$$holes that commented that all our kids need to be cured is a good smack down? How about you come over here and I'll give YOU a good smack down! See if that cures YOU from your disgusting 'it's all about ME' attitude...

It's the whole 'well, if only I were given that kid I'd straighten him/her out in a heart beat' attitude that really blows the lid of my temper. What ya think people? That we didn't try every friggin parenting technique in the books (and then some)???

[yes, obviously still searching for my positive, part of the solution and NOT the problem, attitude..]

Okay, Okay....

Yes, yes... I know I've been a bit of a downer as of late.. What can I say? My 3:30 am - 11 pm schedule for on average 4 days out of every 7 is getting to me... I am TIRED!!
But I hear those of you that have said: "Either you are part of the problem, or you are part of the solution."

And as I want to be part of the solution (and not ADD to the problem, God knows that those of us with kiddos with challenges have enough negative shit to get out from under on any given day), I am going to refrain from posting for a bit (unless it's really really exciting OMG type stuff).

I need to find my mojo/groove back... I seem to have misplaced my 'the glass is half full and somebody will stop by to top it off' attitude....I also seem to have lost my sense of humor.... (and that, my dears, is a BIG stress sign for moi.. I can typically find the absurdity in ANY situation).

So 'off to find all of the above'.. I think most will actually come back once I am through my current work crunch, and have had a few hours here and there to actually slow down (and maybe take a nap... LOL)

"I'll be back".. (but do come send a rescue squad if I haven't resurfaced in a week...)

P.S. I HAVE to add one 'parting shot' and then I'll 'put a sock in it'.
Can you tell me the difference between scheduling your kids around your interests and YOUR own life, versus scheduling your interests/your own life around your kids? No? Then you're part of the problem....

Happy Birthday Dad!!

In case you or mom end up here today...

Wishing you a happy, healthy Birthday surrounded by those that love you. So sorry we can't 'pop in' for a visit ...

I'm going to try my darnest to call you .... probaby from the car (it's going to be one of those crazy looney workdays..)

Love,

Petra

The Dark Age of Autism

I found this in my email Inbox this morning. And it's very powerful, which is why I am sharing it.
As to the sentiments expressed? Gosh, I do hope so.... I just don't know, I don't think we're 'there yet' (as there is still plenty of suffering going on, most definitely within the autism families I've gotten to know and love..). Well, let me rephase that. I DO think we're getting 'there' for the little kiddos that are diagnosed today. But for those of us with 'older kids', for those of us that started treating our kids well AFTER the age of 2? There's still much to be done.

"STILL WAITING"

Do I sound 'blaaaaah'? Well, I'm tired... I'm tired of fighting, I'm tired of 'still waiting', I'm tired of two steps forward/one step back in the twisty turny path toward healing (yup, bumpy day here)

[blogger once again is giving me crap over formatting.... I'll fix that later]

Sunday June 22, 2008

Dear Friends and Colleagues –

THE “DARK AGE OF AUTISM” IS DEAD

Looking back this year’s conference stood in sharp relief to previous years. Earlier years had an element of foreboding. In fact, for years the first night of the conference was reserved for a candlelight vigil with parents sharing their stories of suffering. It was the equivalent of the autism “wailing wall.” Words were not big enough to adequately articulate the enormity of our anguish.

This year the energy radiated from a different place. The focus was not on surviving the present, but on moving confidently into the future. Before, laughing was also taboo. This year a sense of humor was out and about in full force. From the bright eyes and smiling faces shone a confidence that was breathtaking in its redemption.

The Dark Age of Autism was as real and destructive as the epidemic itself. Parents lost their spouses, lost their jobs, lost their savings, lost their friends and lost their way. A diagnosis became an ongoing tragedy that fed on and consumed itself. Played out in thousands of doctors’ offices and picked up by the press a theme of blame, shame, and censure was waged against parents who refused to also lose their children.

Doubt and disbelief grew into defiance and then open rebellion. Asking for help from your school was seen as an act of civil disobedience. Asking certain questions of the medical establishment was akin to burning the flag. Asking government agencies to perform their duties was an exercise in futility.

Ironically, in the years of self-sacrifice and searching to save their children parents found themselves. The Dark Age of Autism forged a parental response more in keeping with a political revolution than a medical diagnosis.

Along the widening plane of engagement parents found their voice. If your background was medicine your voice was needed; law, information technology, administration, accounting, education, IS, public relations–every profession and every voice found a matching need along the spectrum.

Until finally it can be declared the “Dark Age of Autism” is Dead! Never again will our community suffer the same type of terror that tested our limits and tried to embargo our voice. Never again will asking for help be callously ignored and construed as a weakness. The open rebellion has grown into a revolution demanding change.

Welcome to the “Age of Freedom.” Previous obstacles become petty annoyances when our hard-won freedom from fear and faith in the future is measured against the puny and the wrong. Like bad actors in a canceled comedy the same talking heads appear on TV and in print spouting the same tired shtick, unaware the country has moved past them.

While we have moved past you, we have not forgotten you – government and industry enablers and apologists will be dealt with in due time.

A system that allowed this to occur, spinning numbers out of whole cloth to scare parents, which has created the single largest problem the world faces today will end. It will not be pretty, but in life there are prices to pay for your actions. In a poetic turn of justice The Dark Age of Autism is about to descend on its creators.

As always, please let me know if you have any questions, comments, suggestions, or ideas. Thank you.

My best,

Ed Arranga

Ugliness...

Is the comment exchange between a pediatrician-in-training and, understandably, angered parents. Dearest Carrie so does NOT get it.. And what a difference between this young 'lady' and the pediatrician I met (and had the pleasure of spending several hours talking with) last year September at the Gottschall Center Gala (Dr. Vanda Blinn)

Carrie, honey, the fact that you had to go about $250,000 in debt to pay for that fancy M.D is not impressing me. Guess how far several of us A.Ms have gone, or will have to go, into debt to undo all the damage that was completely missed (or dis-missed) by your, oh so well trained and oh so knowledgeable, compatriots??

And

Ugliness is finding out that the most popular kid in your son's 4th grade class threw an 'end of school year party' and invited ALL the 4th graders ..... except for your son and the two other 4th grade kiddos that have an official ASD diagnosis (coincidence? Me thinks not..)

I really don't know whether I am profoundly sad or explosively mad.... I find myself thinking more and more about grabbing my two precious boys and moving to that jungle hut ....

Poetry....

I can't take credit for any of the following. These are all Salamander's.... (I transcribed them as they are, no spelling corrections, no punctuations corrections, no changes anywhere..)

RED

Red is a ruby
The older brother of pink
Red is blood
Red is anger
Red is chicken pox
Red is an apple and a rose
Red is my hooded sweatshirt
Red is my backpack
Red is a chili pepper,
Red and ripe
#####

WOLVES

Wild running so free.

Staring at me with yellow eyes.

The wolves hunting me.

#####

Boston

Red Sox

Crack, slam, whack

Slam, crack, home run

COOL!!

#####

WHAT IS GREEN

Green is the grass and the pine

And emerald rind.

Green are the leaves of a plant's.

Green's feeling is jealous

Green is the water in the sea.

Green is the moss on the tree.

The smell of green is fresh green leafs.

Potatey Slept...

until 7.15 am. And Salamander only just woke up. Oh man, was it nice to sleep in for a bit.

And now it's time to feed the hungry hordes..

The Five Most Painful Words..

I ever heard in my entire life.......

"Well, I never WANTED kids."

These words were spoken to me almost a year ago. And they still hurt as much today as they did then.

I know I need to forgive, I know I need to forget.... but damn, it's HARD!!

(part of the problem is that I HATE the fact that apparently feeling this way is justification for only wanting to do the 'easy and fun stuff' with the boys..)

Pool Party...

I'll let these speak for themselves...

(Seeing Salamander in this last video.... OMG... this kiddo has come such a long way...)

Do You Have Any Idea..

[frustrated and angry rant paragraph removed]

I know, it's ALL about priorities....

I don't know WHY I even bother. It'll be all up to me do the school research, the school visits, the program design, the final enrollment decisions, etc. anyway..


P.S. Jeanne, I WILL reply to your lead, pica, bone pains question. That one is going to take more time than I have right now. You may find some stuff around that in Dr. Yasko's book; most definitely on her parent support board (look to the right side of my blog for the link). It's of course more complicated than I wrote this morning; aluminum plays a big part in this too. Is Charlie a 'gut kid' (considering you're taking him to Dr. Krigsman, I think I know the answer). That means that Charlie most likely has an aluminum toxicity problem as well...


P.P.S Thanks C. R for re-assuring me a bit on the options and possibilities at our town's Middle School. You are WONDERFUL, and you know just what to say. I apologize for continuing to be so freaked out about this whole Middle School transition. And you know there is more to it than that; Salamander is starting to enter territory where I cannot lead, where I cannot guide, I can barely even follow. I am NOT a man, I never went through the transition from young boy to male adolescent and then to young man. I am trying so hard to make 'the other parent' understand that Salamander needs his father to help him in this. And I am getting absolutely nowhere....

Just Thoughts...

Boy, isn't it easy to get sucked in to (and sucked dry by) all the autism awareness and advocacy blogs and web pages. There is such so much happening (some of it really good, some of it continues to be really, really bad). I mentioned on a friend's blog last nite that I am starting to allow myself to believe that the tide is turning, that I actually WILL see in my lifetime an acknowledgement that so many of the kids diagnosed with 'autism' are just really really sick medically and need TREATMENT to address the cause of their 'odd' behaviors and not THERAPY to stamp out those 'odd' behaviors.

But that being said, I allow myself to get sucked in too much.. waaay too much. Salamander's school is out now, I still have two more weeks of a crazy busy work schedule ahead of me (it'll be busy after that too, but I should be able to drop down to about 20 - 25 hours a week for at least a month, instead of 45+). I can continue to send Potatey to school, but I don't necessarily want to (but I will for the next 2 weeks). I want to spend time with my boys, just enjoying the summer. So I need to stay focused on what is going on HERE, and do what needs doing, and spent less energy on all the stuff 'out there'.

So I made myself (well, more exactly I made my boys a promise, they just don't know it). I can check the autism blogs/web pages one time a day, one time, and that's it. It can be the morning, the afternoon, the evening - but only one time a day. And the second part of the promise is that I am going to bring the primary focus of my blog back on my boys, on OUR journey, the good stuff, and the not so good stuff. Oh, you'll still see me link to 'big news', but as of late that's mostly what I've been doing. And there are plenty other blogs that do that and do a much better job at it than I do.

So on that note:

Salamander had a rough afternoon yesterday. He came home way earlier than he usually does (as school got out at noon), and for most of the afternoon the poor guy was like a fish out of water. All this stuff he WANTED to do, but he just couldn't get himself to 1) pick something, 2) get started. So he spent most of the afternoon pacing circles around me (which made it EXTREMELY hard for me to get my work finished up.. and in fact, I didn't finish up), and there were quite a few screaming and yelling episodes. Things got better around 4 pm or so when Potatey got home and I took both boys to our farming co-op with me.

Unfortunately, pick up of our veggie share was NOT at the farm (threatening T-storms), but at a nature center close by. Boys were disappointed (and so was I, as some good running through the fields chasing off the birds would have gone a long way towards getting the endorphins going). But we found the lady that runs the co-op waiting for us at the nature center (she is utterly in love with my two.. and I can completely understand), so the boyos helped her for a bit and then helped me pick out our veggies. First strawberry harvest had come in too, I think half of our share didn't even make it to the car.. LOL!!!! There was one memorable blow-up on Potatey's part when he realized that this week we had to make a choice between Shell Peas and Snow Peas. As he got to pick last time, Salamander got to pick this time (and picked the Shell Peas), and Potatey wasn't happy with that choice, but Salamander was firm.

Oh yes, I realize the irony in my children fighting over what PEAS to pick, as opposed to what stupid TOY in a store. And I'll take a PEA fight anyday.

After gathering our veggies, the boys asked if they could run around and explore for a bit. I had my quart of strawberries, found a perfect sunny spot on in a grassy area, told my brood to stay within yelling distance (LOL) and off they went.

About 5 or so minutes after I plopped my butt down, a gentleman with two boys about Salamander's age walked in as well. Salamander ran over to the two boys, stopped, made eye contact with the boys and said: "Do you guys want to play?" Boys looked at their dad, dad nodded, boys said: "Sure, what are you guys playing?" Salamander: "We're playing freeze tag, that pole over there is base." And off they all ran, hooting and hollering and chasing each other (while Potatey was by far the youngest child, he certainly wasn't the slowest. That kid has got evasive moves that would do a Running Back proud. Sure he was tagged a fair bit, but typically within a couple of minutes he would have launched himself sucessfully at one of the older kids).

The dad turned to me and said: "It always amazes me how quickly kids 'just' connect like that and then run off to play together." Of course, the gentleman had no idea what he was actually saying and what Salamander's history is. For the first few minutes of play I was a bit too choked up to really chat as I was just so proud of Salamander, how smooth he had maneuvered through this whole social interaction and how much fun he was having (it all looked so 'easy', and those of you that know Salamander KNOW that social interactions frequently are anything BUT easy for him). Once I regained my composure, I spent a very pleasant 15 minutes or so just chatting while our collective brood ran around (I actually had a chance to make SMALL TALK.. OMG.. and it felt SO GOOD). Then, as it was getting late, we all collectively walked to our cars, said our goodbyes, and went our respective ways.

We definitely all rode that "gosh this was FUN" high back home. Boys had a neighborhood friend come over (who's out of school now too.... he used to spend a lot of time over here, haven't seen much of him this school year, but I'm sure that'll change now), and they dug fortifications in the sandbox while I made dinner. We had a very uneventful dinner, some nice 'quiet time' after and then the boys went off to bed.

Potatey slept halfway decent (did come to wake me up around 5.30 am.. NOT!!!). Unfortunately Salamander woke up with terrible bone pains (I am pretty sure he's mobilizing lead again.. I've seen an increase in pica). I had to give him something for the pain, and he was better after a nice soak in hot water.

They're currently off with their dad doing stuff. And I have 18 million things to get done (what I really WANT to do is exercise and take a nap, but that won't happen, as what I HAVE to do is groceries and clean up this joint, especially purge Salamander's school work area). So I better get my butt of this blog and get going.

Later...

WHEEEEHEEEEEE!!!

BUMPING THIS ONE TO THE TOP.
David Kirby delivered on his HuffPo promise. Please jump over for his take on the CDC report he told us about last nite in Providence.

Last day of school for Salamander...
But somehow it's Potatey who displays the 'I'm glad school is over and I can't WAIT to get out and get started on my summer' craziness. I swear, at some point overnite, Potatey morphed into the love child of the Tasmanian Devil and a Ninja Turtle.. he is BOUNCING OFF the walls hooting and hollering and 'attacking' anything and anybody in sight!!! (hmmm, wondering what he had for dinner last nite.. and yes, he kept the singing up for quite a while apparently.. HE, HE, HE).

David Kirby last nite was EXCELLENT.. he spent a lot of time on the (potential) mitochondrial dysfunction component of autism (a subject near and dear to my heart), and he dropped quite a little bombshell regarding a report from the CDC (signed by Ms. Gerberding) to the House Appropriations Committee (I think he said he was going to write a Huffington Post about it.. I DO hope so, as the whole story is so d#mn complicated, I'll need to hear it a few times before it registers). My take-away from the blurbs David shared from that CDC report is that [I'm paraphrasing] CDC 'concurs that the data captured by the VSD cannot be used to make any conclusive statements about a link between vaccines and autism'. YES, you are reading this right. CDC is concurring that the Verstraeten Study (which has been used over and over again to say 'There is no link. Shut up, you stupid parents. There is no link') tells us NOTHING (and of course I am referring to v 5 of that study as published, and not the v 0 of the study as revealed by the Simpsonwood documents..).

I hope to have more time later (plus I hope that David will do that Huffington Post as it'll save me a lot of time rooting through my recollections from last nite). Salamander is coming out of school at noon today, and I have a ton of work shit to get done...

Oh, did you catch the latest and 'greatest' way that AAP is trying to pressure parents who have questions regarding the current vaccination schedule to just 'shut up and comply'? Lovely eh?
And that those of us that decide to modify the recommended vaccination schedule (or decide to suspend all together as our child had a reaction that scared the crap out of us) are now being asked "Well, what disease do you want your child to get?"

WTF?

I'll be honest, I'll take the flu, chicken pox, rubella, mumps and even measles any day, yes ANY day, over the (seemingly never ending) cascade of medical problems I've seen Salamander struggle with over the past 8.5 or so years (not saying vaccines caused these, but they didn't help.. )

[yes, I realize I didn't mention polio, tetanus, pertussis, diphtheria, and a handful of others - the, albeit low, potential for my boys getting those diseases DOES scare me. But not as much as the, much higher, potential for my boys to develop serious adverse events as a result of those vaccines]

What's the Matter With Kids These Days...

Bumping this one too, to follow DK's HuffPo post. I think these two posts really belong together..


Oy, Dan Olmstead's piece on Age of Autism is gonna hit a whole lot of people where 'it hurts'....(as in the 'but MY kid does NOT have THOSE issues' stick-your-head-in-the-sand-and-it'll-all-go-away' stupid ass; last time I checked I had a few of those amongst extended family members... THERE, I said it).

He's so right though. Schools are bursting at the seams with kids that, while 'lucky' enough to not have developed full blown autism, didn't 'escape unscathed' from whatever it is that is destroying a whole generation of young kids...

Extremely gifted (in some areas) but profoundly disabled (in many others).....that is right now where Salamander is at (and I continue to have high hopes that over time there will be less areas in which he's disabled and more areas in which he's gifted...). And it is heartbreaking to watch (and I DO think that society at large is much much much less tolerant of these kids than of the ones where 'it's obvious'.. but that may just be my particular, colored, perception speaking..). Salamander is shouldering an awfully heavy load for such a young child, and I'll do (and AM doing) anything to make that load lighter...

Oh, and lets not forget all those kids (especially a lot of the sibs of kids that are 'diagnosed') who have 'autism from the neck down' (as in, the same gut problems, immune system dysfunction, detoxification impairments, meta/mito issues MINUS the neurodevelopmental involvement)...

One more pet peeve: If I hear one more time "But Salamander is sooooo smart", in response to me trying to address an issue associated with an area where Salamander is NOT doing so well, I am going to

SCREAM!!!!!!!

I KNOW that Salamander is smart.. THAT's NOT the issue....

CBER (as in FDA) Workshop on Mito Disorders and ASD

And then this will be the last one I am bumping up.. a Holy (as in 'effin) Trinity...

Take a look at David Kirby's piece on the workshop announced on the CBER web page (June 29 in Indianapolis):

Mitochondrial Disorders of Childhood: Testing, Potential Relationships to Autism Spectrum Disorders, and Triggers for Neurological Deterioration [Announcements here and here]

Could it be that folks are finally waking up?

My brain is already running overtime in figuring out IF and HOW I can get my butt to Indianapolis. Any of my blogging friends that are in that area? Please, please, please GO!!!

(I know that eventually the transcript will get posted on the FDA Docket web site, but it tends to take FOREVER!!!).

CRAP - June 29 is a Sunday, and I will most definitely have the boys that weekend. So no go.... If anybody is able to go, will you please let me know?

Salamander's Report Card...

Some very very interesting changes.... I have to think about how to best describe what I'm 'seeing'... but it boils down to something that I've seen happening for the past month, maybe 2, or so.

Salamander is starting to 'get' that communication is more than an 'endless stream of words'. While Salamander has an enormous vocabulary, until recently, that vocabulary was primary put to use to describe concrete facts about his special interests. I don't think he truly 'got' that words have a 'feel' to them, a 'rhythm', that words can have a 'smell, a sound, a taste', that words can be 'happy or sad or angry or frustrated' (aka use words to convey emotions).

That is changing however, and it's changing FAST. His language is so much more fluid and natural. And I know that his reading comprehension is changing too...

Of course I'm biased...

Look at this article I just got in through one of my business newsletters..

Of course I am biased, but dang, the Europeans do have a lot more common sense these days when it comes to acknowledging the impact chemicals can have on health. A couple of paragraphs I want to lift out:

"The new laws in the European Union require companies to demonstrate that a chemical is safe before it enters commerce -- the opposite of policies in the United States, where regulators must prove that a chemical is harmful before it can be restricted or removed from the market. "

and

"From its crackdown on antitrust practices in the computer industry to its rigorous protection of consumer privacy, the European Union has adopted a regulatory philosophy that emphasizes the consumer. Its approach to managing chemical risks, which started with a trickle of individual bans and has swelled into a wave, is part of a European focus on caution when it comes to health and the environment.
"There's a strong sense in Europe and the world at large that America is letting the market have a free ride," said Sheila Jasanoff, professor of science and technology studies at Harvard University's John F. Kennedy School of Government. "The Europeans believe . . . that being a good global citizen in an era of sustainability means you don't just charge ahead and destroy the planet without concern for what you're doing."


As I said, common sense...

Hickory Dickory...

Am about to leave Potatey in the care of his dad. A Potatey who has been singing FROM THE TOP OF HIS LUNGS:

"Hickory DICKORY Dock.. The Mouse Ran Up the Clock"

Over and over again

When I asked Potatey "Why are you singing so loud?"

He said "The mouse is deaf." And proceeded with singing..

I think this is hysterical.. Potatey's Dad thinks it's not...

You've Got to be Effin' Kidding Me...

Pun oh so very much intended....

Really, sometimes this, still very much European, girl can't help but shake her head over the absurdity of what is considered 'news worthy' in her adoptive country (I love this country OK? If not, I would have gone back to L'Europe a long time ago. But just because I've been a legal, tax paying, alien since Spring of 1993 doesn't mean I completely 'understand' this place...).

So look what's the Most Viewed Newsweek Web Exclusive article...

Here's a, particularly juicy, quote:
"In Nevada, the world's oldest profession has been very lucrative. In a typical year, legal brothels generate about $50 million in total revenue and have an economic impact of about $400 million on the state. But in the last 18 months the industry's cash flow has taken a dive. Why? Like other businesses around the country, bordellos throughout the state are feeling the pinch of rising gas prices and a weak economy."

WTF?????? Yes, THAT'S considered news... Well, excuuuse me for not getting all 'hot and bothered' about it..

Psst, Newsweek, how 'bout reporting on something that WILL have an impact on the economy for generations to come? Like the TRULY scary increase in autism rates?????

But then again, SEX sells.... very ill kids with autism do not.... (unless, of course, you're a BIOSTITUTE..)

A Riddle....

What do:

Hormonal Rumblings

+

No consistency/predictability in the school day schedule due to End of School

+

Looming T-storms

+

Full Moon

+

Start of Curcumin (a supplement that Salamander very much needs, but it does contain methyl groups and Salamander is very sensitive to methyl groups)

Make?


A very moody, volatile, explosive, mean, cranky, 'hell bent on making everybody else miserable' Salamander....


I love this kiddo with all my heart and soul. And I get that he has had a crappy day and that he just cannot deal with his own emotional turmoil right now. But sometimes these moods of his DO get under my skin (newsflash... I am human after all).

Momma needs a drink... TG the wonderful Ms. L is here to help tonite (so she can keep Potatey busy while I talk Salamander down from whatever orbit he's in...)

How to Survive the Impact of Autism on Your LIfe..

And now we interrupt this broadcast for the following important message:

HOW TO SURVIVE THE IMPACT OF AUTISM ON YOUR LIFE

Amen, amen, amen to all that Cyndi wrote

(and now that I have been duly slapped upside the head, time to go IMPLEMENT!!)

P.S. I have to say that I thorougly enjoyed Kelli Ann's 'here's what I do' tip in the comments section to Cyndi's piece. Hey Kelli Ann, if you end up here by any chance, I have another "Pool Boy" story for ya!

Now Lookey Here...

So this is what happens when you get up at 3.30 am to get some work done, and you take a quick break while working up the courage to start that last tough piece that you just cannot get going on...

The Career Makeover

My Result: President

It's because of folks like you that people unite to accomplish great feats. Every movement needs a visionary, someone to lead the way and motivate the masses. And that someone is you. As a born leader, people honor your wisdom and are inspired by your commitment to your cause, company, or family. You're capable of encouraging others to believe in just about anything you represent whether it be corporate restructuring, political reform, or healing crystals. And since you're such a team player and so smooth with the schmooze, you're a shoo in for big team meetings and other public presentations where people skills are a must. Where you lead, they will follow.

Who's like you:
Eleanor Roosevelt

Likely careers:
President, CEO, motivational speaker, V.P. of sales

What are you?
http://web.tickle.com/jumpto?test=careerogt&c=50652

Hmmm, gotta think about this result for a bit....

BACK TO WORK FOR ANOTHER 30 MINUTES AND THEN ON TO BREAKFAST/LUNCH CRUNCH...

Doing Better...

Really busy today, tomorrow and Thursday... Will have very limited time to post...

Yuck...

Not a good day for me today. I'm E X H A U S T E D, processing information at the snail's pace, totally stressed out, too much to do, too little time, can't focus, have a case of writer's block while facing a rapidly approaching deadline, have been starting several of the 18 million things on my to-do list but can't seem to finish any of them.

YUCK. YUCK. YUCK.

Send a very tired, very frustrated (in oh, so many more ways than one), very discouraged girl some 'positive vibes' will ya?

(and a quick perusal of my usual blogs shows that I'm not the only one in a funk today. Which makes me feel a little better, but doesn't get me out of my 'I need to get shit done but can't seem to get going' predicament).

AND WHAT THE HELL IS UP WITH IT BEING PERFECTLY OK FOR ME TO SAY TO A FEMALE FRIEND THAT I MISS HER AND WISH WE HAD MORE TIME TO SPEND TOGETHER, BUT THAT SAME SENTIMENT GETS COMPLETELY TAKEN OUT OF CONTEXT WHEN THE FRIEND IS MALE????

Happy Father's Day (I think..)

Salamander is feeling OK, the skin on Potatey's belly looks just fine. TG.

And as I am mentally and physically exhausted (with a killer headache to boot - and no, I did not go on a bender last nite) and just cannot find the words to write a thoughtful Happy Father's Day post, I am going to shamelessly borrow a very inspiring one that was running on Age of Autism this morning.

So here goes, Happy Father's Day to all the wonderful daddies that pop over here.


Just found a video that shows a good bit of Jim C's (speaking of awesome dads!) speech at the Green our Vaccines Rally.
I also found a second video where Jim C speaks about how 'learning how to love THEM [his daughter Jane, Jenny and her son Evan] MADE ME A MAN!'. A very powerful bit... his emotions are clearly written all over his face...
And now lookey here, my friend Kim S. was inspired by that same comment...

Potatey Soccer Champ!!!

[I'm still bent out of shape about having missed the actual award ceremony.. but these pics make up for it somewhat. Apparently one of the neighborhood moms took a lot of pics on the soccer field. I'll ask her tomorrow..]

Over and Out..

For today anyway..

My internet provider is s l o w a s a s l u g tonite (brings back memories of the good ole 'dial up' days.). I can't get into my email accts, I barely made it into my blog (but I can't pull up any comments any of you may have left on previous posts - and if I can't pull them up, I can't respond to them, so sorry..).

I'm going to see this as a sign of above that I should call it an early nite. I should be working, but I just don't have the 'umph' tonite.

It's been a wild and wacky one out here today:

haircuts BEFORE breakfast

low blood sugar meltdowns

split lip (Salamander)

Kindergarten visit (Potatey)

metabolic crash (Salamander)

last soccer game of the season (Potatey)

I missed it (as I was dealing with the metabolic crash)

Potatey got a medal

boys in the pool

Potatey learning to swim (yeah!!!)

bright red skin on belly coming out of the pool (Potatey)

angry tantrum with punching and spitting (Salamander)

long soak in the tub w/ Epsom salt + EDTA (Salamander)

feeling better (Salamander)

crazy soap concoction mixing (Potatey)

crying because belly hurts (Potatey)

two very tired boys

trouble going to sleep because skin on belly hurts (Potatey)

anxieties at bed time (Salamander)

not a scrap of food left in the house (have not had a chance to do groceries).

Update by Petra, MOM Detective...

OK, so here's the 'cascade of events' I've been able to piece together...

Boys went to our Organic Farming Co-op late yesterday afternoon (I worked my butt off all day yesterday, boys were not with me).

It's sugar pea season. Salamander LOVES sugar peas. So he stuffed himself with sugar peas straight off the vine (farm is organic, so no issue there).

Problem is: peas are SUPER high in glutamates. Salamander has serious issues in glutamate/GABA conversion (you should see the amount of GABA this kid takes on a daily basis). Nobody reminded Salamander of the fact that he can only have a small amount of sugar peas, to not overload his system.

Farm is currently also growing WINTER RYE, which is being harvested now. Both boys have Celiac's, and of the 'super sensitive' variety. They react to even the smallest amount of gluten in the friggin' air!!!. So even though I am pretty sure that the boys stayed away from the winter rye itself (as they KNOW that rye is a gluten containing plant, and they've been drilled to stay away from all things gluten), as it was being harvested, it was bound to be in the air (and now I also have to go and find out WHAT the farm folks are planning on growing on that field that current has the winter rye on it, as whatever they'll be growing on it, we won't be able to have it due to soil contamination issues. CRAP!!)

Boys stayed at the farm for a long time. Didn't have their dinner until well after 7 pm (as they had filled themselves with sugar peas - shouldn't have been a huge issue, but still, eating this late can have had an effect on blood sugar regulation). Of course, a late dinner meant a late bed time (I worked very late last nite, so I wasn't there to monitor bedtimes). Late bed times do not necessarily mean sleeping in. Salamander NEEDS his sleep (open up any book on kids with bipolar type issues, and the importance of good SLEEP is the first thing that's discussed).

I noticed that their clothes smelled of dryer sheets. I do NOT use dryer sheets. Dryer sheets contain all kinds of nasty chemicals, as well as phenols. Both boys definitely have PST issues, Salamander more pronounced so. I asked the question, and yes indeed, their clothes had been dried using dryer sheet fabric softener. GRRRRRR (not that I have never explained before WHY WE DO NOT USE DRYER SHEETS AND/OR REGULAR BRAND LAUNDRY DETERGENT)

Boys had a big breakfast this morning with a LOTS of protein. Both boys have issues breaking down protein properly, if they get too much, it feeds an ammonia overload issue. Which puts strain on the transulphuration pathway, which was already under assault due to sugar peas (glutamates) and dryer sheets (phenols).

Boys got their hair cut this morning. Barber sprayed their hair with something. More phenol exposure.

While Potatey and I were at his K-garden Open House, Salamander and his dad WALKED to the town library. No biggie, but it is fairly hot and sticky outside (and heat, by the way, triggers the body into producing more GLUTAMATES), and they didn't bring ANY WATER OR SNACKS.

Salamander did OK at the library (but I am 100% sure he must have shown some signs of 'biochemical distress' when he was there.. as I said, they can be very subtle), but ran into 'trouble' on the way home. Couldn't walk anymore, couldn't talk any more, just started crying....

By the time I got back home with Potatey, Salamander wasn't home yet. But he literally CRAWLED in a few minutes after we got home, and he was a mess (crying, shaking, screaming).

Picture me going into DEFCON 1 (and I am not the most patient with the ADULT human variety when I'm at DEFCON 1, so yes a few choice words were spoken).

About 15 minutes ago, Salamander was at a point again that he and I could actually have a conversation, and that is how I pieced the above together...
Salamander also was able to tell me that, while walking back home from the library, he felt his lips get really dry, and that his mouth felt like it was swelling up, and that he was getting a really bad headache, and that he started to get all shaky, but as they didn't have any water or any other snacks with them... and as Salamander wasn't able at that point to TELL his dad what was going on, as Salamander's ability to communicate was 'kaput'...

Well, you can put the pieces together too.... biochemical TRAINWRECK!!!!!

None of the above is anybody's fault. It was an unfortunate stack up of events.

But sjeesh louise, we've been dealing with these types of metabolic 'everything goes to hell in a handbasket' crashes for a LOOOOOONG time (he's been having these types of episodes since he was 2.5 years old.. and TG in the past 2 years I've gotten a LOT better at understanding why and what we can do to keep things stable, and as a result, Salamander's crashes are much less 'deep' now and he recovers much quicker), and it's not that I haven't explained over and over again for each of the events above WHY they are an issue, and WHY these exposures should be minimized to the extent possible.

I know it's exhausting to always have to be 'on the alert' for the signs and symptoms. But that's just the way it is. And trust me, it is infinitely more exhausting to have to deal with a crash.
And yes, some of what let up to the 'crash' could have been avoided (but of course I can't say THAT without somebody getting all defensive on me).

Bottom line, I can never let anybody else 'drive the bus'....

(off to bang my head against the wall now..)

Grrrr...

For those of you that have read Jenny McC's book....

Rememenber how she talked about things happening to and with Evan, whenever she had to step away and leave 'the other parent' in charge? And that she was left with this 'hmm, funny, these types of things never happen when I'm in charge' feeling?

Boy can I relate.

It happened AGAIN this morning. Potatey had an open house at his new Kindergarten school, and the invitation specifically said to only bring the K-garten student and make alternate arrangements for the other kids.

So I did.

Salamander was fine when Potatey and I left.

Salamander was a mess when Potatey and I returned; no energy, crying/weepy, can't put two words together, slow as a slug moving through molasses, aching all over. Yup, big time hypoglycemia and mito issues (he's more stable now otherwise I wouldn't be on the computer.... he's resting comfortably on the couch with a favorite book within my field of vision).

Now these issues can strike 'seemingly' out of nowhere. And maybe I am just really good at picking up the more subtle 'oh oh, things are going south' cues. And maybe because of that ability to 'read' Salamander's biochemistry, I can step in and adjust BEFORE he hits the slipperly slope and crashes.

But I haven't seen things get so bad so quickly in quite a while (Potatey and I weren't gone for more than an hour). And of course my questions of 'what happened?' are not getting answered.

Sigh...

(and then certainl people wonder why I give them 'the third degree' whenever the boys come back home)

From the Sudbury Town Crier..

Taking a break from another marathon day....

This was posted by my blogger friend Jeanne a couple of days ago (I think.. I completely lost track of time... LOL).

A very inspiring story, and at the same time it provides a much needed REALITY CHECK on what it actually costs to get these kids well. Take a zero away from the number mentioned in the article, and you're in the ballpark of what I've been spending on a yearly basis for the past 2 years on treating both my monkeys. And I fully expect to have to do that for at least another 3 years. You do the math... TG that my business is doing as well as it is (401(k)?? whas dat?? LOL).

As I commented on Jeanne's blog, I had the pleasure of meeting Zack and his amazing momma in October of 2006 at Dr. Amy Yasko's Boston conference. Jen B. actually spoke at that conference and talked at length about the progress Zack had made on Dr. Amy's protocol. I had a chance to observe Zack at the 'meet and great' reception that took place at the end of one of the conference days, and he was a delight to watch. He looked so 'normal' to me!!! (and as I was only just embarking on Dr. Amy's protocol for my two at that time, I was absolutely inspired!!).
And as Jen B was so vocal at that October 2006 meeting about Dr. Amy's protocol, I can't help but wonder why Dr. Amy's name wasn't mentioned in the article...

Ah well, in the end it doesn't really matter what 'did the trick'. Fact is Zack is BETTER. And that is all that matters. I wish him a long and healthy and happy life.

More...

There will be a continuation to the previous post. I had a LONG conversation with Salamander last night (when I came back downstairs last nite from putting Potatey to bed, I caught Salamander watching a very inappropriate program on TV on a channel that he KNOWS he can't select. And when I confronted him about this, he LIED to me about it. He has never done anything like this before...And yes, he is going to be loosing TV privileges for a few nights).

I don't have time to summarize all right now, but part of his struggle is that he desperately wants to be 'popular and have lots of friends'. Problem is that he picked a few 'trouble makers' to emulate, and has starting copying their behaviors and attitudes to get noticed by the other kids. And while I agree that these particular 'popular' kids may be getting a lot of attention from the other kids and from the school staff, as Salamander was able to reason out on his own as we were talking, this is NOT the kind of attention you want. And he realizes that he needs help in making good and smart choices. He said: "It's hard to be me, as only a few kids want to be with me when I'm just me. Lots more kids want to be with me when I act like the popular kids."

Oy, I have no easy answers for him as to why you get more attention when you act like a jerk. Nor do I have an easy solution for him on how to balance between wanting to be popular and staying true to yourself.

Welcome to the teenage years... They are not going to be easy...

"Interesting" TEAM Meeting..

UPDATE AT 6.15 pm:

Just had a longish talk with the amazing Mrs. C. R. who takes care of Salamander three afternoons/week after school gets out. She validated my feelings and perceptions. In fact, she has similar feelings and perceptions.

And then she brought up several other issues that we MUST work on. Salamander has a few 'topics of interest' that are becoming highly inappropriate considering that he's 10 and will be transitioning to Middle School in a little over a year. I've worked on those over the years, but haven't been consistent enough. It's time to get serious. Also, Salamander's safety awareness, his ability to make 'smart' decisions when put into peer pressure situations, his ability to distinguish between a 'good' friend and a 'bad' friend are poorly developed. Time to step up working on those too....

Sometimes it is really, really hard for me to not 'crumble' when I realize that there is yet more stuff that needs to be addressed .....


Just got back from a TEAM meeting at Salamander's school. My main purposes were to do a 'quick download' on what went well in 4th grade, what didn't go so well in 4th grade, and to hash out the transition plan for 5th grade.

All of the above was covered and Salamander got 'glowing reviews' from all TEAM members involved. And I agree, this has been an amazing year of growth for Salamander. He has gained so much confidence, skill and knowledge; in academics, but much more importantly in his social skills, and emotional development/regulation. There are so many examples and situations that I can list that he now 'gets' and 'gets through' without struggle, hesitation or anxiety. And compared to his peers (and his peers being kids that have similar or more significant neurological challenges/differences than he does) he has made light year leaps. Socially and emotional cognitively he is doing things the school TEAM members never thought would be possible for him (which in my mind once again is living proof to the fact that once you address the medical problems these kids deal with, they DO learn. And they learn FAST!).

And trust me, I am 'over the moon' with how much progress he's made over this past year. And I know he'll continue to progress.

Thing is we're not there yet.

See, I see him in a variety of 'out of school' settings where the set-up is NOT as structured, NOT as predictable, NOT as carefully monitored. coached and guided. And I agree that he is leaving his peer group (and remember: Salamander's peer group consists of kids like himself, with multiple and complex neurological challenges/differences) in the dust. And I agree that within that peer group he is very much liked, respected and looked up to (per one TEAM member: Salamander has really become the leader of his group, in a very calm, nice and gentle way. He's not bossy about it. He thinks things over carefully, makes good suggestions, and the group really listens to him).

BUT, place him in a non-structured, unpredictable, not carefully monitored/coached (i.e. 'normal') 10 year old boy scene, and things don't go quite as smoothly. There are some pronounced differences in how Salamander approaches things and situations versus how neurotypical boys approach things (and yes, I realize that Salamander is NOT neurotypical, hence the differences). In the setting as just described, there continue to be challenges around anxiety, frustration, rigidity, anger management, ability to shift, shared play, etc (no doubt however that he has made GREAT progress in all of these areas).

So what's my point?
I don't know how to explain this, especially to those of you that read this that are not 'immersed in this neurotypical vs neurodevelopmental differences/challenges/deficits stuff'.

I want for Salamander to get to that 'next level', that is being able to get through the unstructured, unpredictable 'normal' stuff WITHOUT needing coaching, prompting, scripts, aides, facilitators, etc. I want, in these situations, for there to NOT be a discernible difference between him and how his NEUROTYPICAL peers do things.

While it is awesome that we've gotten to a point that he can make it through the school day/school year in one piece without any major hick-ups (as we HAVE had our share of bumps in the road this year too), I want for him to be able to get through LIFE in one piece.

Maybe I am just being greedy, but considering the enormous growth I've seen in him this year, I want MORE for him, I think he CAN get to that next level and I want to make he gets what he needs to make that possible.

I'm just not sure school is 'hearing me on this one' though.. They kept bringing things back to a comparison of how Salamander is doing versus his neurologically challenged peer group. In my mind, when it comes to life skills, coping skills, the GRAND SCHEME OF LIFE, his neurologically challenged peer group is NOT a valid comparator. I think we need to compare where he is at versus where his neurotypical peers are at. And then continue to help him acquire the necessary skills to 'get there'.

I am all for teaching acceptance, for having Salamander's world adjust to how HE perceives things (and I will continue to advocate my BUTT off for what he needs and how he needs it and when he needs it). Fact is, at some point, Salamander is going to have to transition into dealing with how the real world works (and that world continues to be largely governed by how neurotypicals do and perceive things).

And I know he'll continue to acquire the skills needed to make that transition. But I get the sense that that will come to rest mainly on my shoulders (and the shoulders of several other wonderful people who interact with Salamander OUTSIDE of the school setting).

As I said, maybe I just want too much....It's just that, he is soo damn close, he's on the fence of life looking in and I want him to be able to hop the fence and join in!!!!


Several TEAM members had a rather visceral reaction to me mentioning RDI as one possible tool to help him 'hop the fence and join in'. One comment: "Well, we think that Salamander is too high functioning and that his skills are too advanced to benefit from RDI." First of all, this comment shows how little they understand about RDI. Second, if I had ever let comments like 'he's too high functioning' deter me from implementing what my gut told me would really help Salamander, he would never have gotten to where he is now. In fact, most of his medical problems would have been left untreated...

Jenny's Heartbreaking Story...

Please read this about what has happened/is happening to a beautiful young lady.

Please, please, please, if any of you have any thoughts on what may be ailing her and what could be done to help her, please post those thoughts on her family's blog at the link above.

I'll be keeping Jenny and her family in my thoughts for a long time to come (and boy, it's a great reminder that the bullshit I deal with on a daily basis is just 'small potatoes' compared to that).

Nice "Life Style"???

My Ass!!!!!

So frequently people will ask me what I do for a living. As what I do is kind of complicated to explain, I will typically answer that my work is a cross between what a medical writer, a technical writer, and a paralegal would do (those of you that know what I actually do.. sounds about right eh?). And that I've been doing this for medical device companies for over 13 years now, and that I've been doing this as a consultant/contractor since March 06.

Inevitably people will then say: "Oh, you are your own boss? That is just so nice. Being able to set your own hours, do what you want to do when you want to do it, I wish -I- had a job like that."

Most of the time I let this stuff go, as truth be told, being my own boss does allow me to be flexible in when, where and how I work, so I can take care of stuff involving the boyos WHEN it happens and without first having to get 'permission' from 'the boss' (did THAT for many years, and while I have had some very understanding bosses that gave me all the flexibility I needed (as they knew the work would get done regardless), I've also dealt with way too many total shitheads).

The drawback of being a consultant/contractor is that you're 'on the clock' 24/7, as people tend to have different expectations from a consultant/contractor. It's not unusual for my clients to fire off a barrage of emails at around 6 pm and to then expect answers by 8 am the next morning. I've learned to set boundaries, I've learned to set clear expectations, and most of the time things work out just fine (plus I do have a reputation for 'getting the job done no matter what it takes'.. my clients know that if I have to take 'time away' to deal with stuff, I'll make up for that time somewhere, somehow).

The past several weeks have been rough.. work has been incredibly busy (which is good.. heck, every penny that comes in through the business pays for the boys' treatments.. so not having any work means I have to cut their programs..), and two of my projects have been very, well, 'challenging'. Boys have been detoxing quite intensely, end of school year is coming up, earlier this week we've had this incredibly hot weather.. Things have NOT been running well. So I'm tired, and I've had to struggle HARD to keep all balls in the air.

So when yet again I got the 'oh, it must be so nice to be your own boss. Especially on a really nice day like this. You can just decide to be outside for a while and get work started later', I couldn't help myself and replied as follows:

"Hmm, wish I could. But these past few weeks have been really busy, and I have a big project deadline by mid afternoon tomorrow. And to get it all done in time I'll have to push very, very hard.
A typical day for me looks like this:
3/3.30 am - 6 am: work

6 am - 9.30 am: prepare boys morning supplements; make their school lunches & snacks; make breakfast; wake up boys; get them to shower and dress; do before breakfast supplements; eat breakfast; do after breakfast supplements; do any necessary school paperwork (permission slips and all that); get Salamander ready for school (potty, brush teeth, pack bag; B12 supplements); get Salamander on the school bus; clean up my kitchen; do a few loads of laundry; re-order supplements as needed; get Potatey ready for school (potty, brush teeth, pack bag, B12 supplements); drive Potatey to school and get him settled; drive back home; put laundry in the dryer)

9.30 am - 4 pm: work (and deal with whatever non work stuff that comes up such as school calls, bills, medical appts, etc as it comes up)

4 pm - 5.15 pm: pay bills; return phone calls; prepare dinner supplements; start dinner; do groceries; drive to Potatey's school to pick him up; drive back home and continue with dinner; help Salamander transition into 'home life' when he gets home.

5.15 pm - 9 pm: before dinner supplements; finish preparing dinner; get boys to eat dinner; after dinner supplements; talk about their days/finish up homework; little bit of TV time for Potatey; get Potatey to bed; before bed supplements for Salamander; get Salamander to bed; clean up my kitchen

9 pm - 11 pm: work

11 pm - 3 am: get some sleep.
And this is my schedule Monday - Thursday for most weeks." [and I am sure I didn't even list half the stuff I do on any given day]

Tired yet????

I sure am.. especially since the boys have not been sleeping well, and their sleep difficulties tend to strike between 11 pm and 3 am (which means I didn't get much sleep at all this week).

Don't know too many people who'd call the above a "Nice Lifestyle", would ya?

Most of the time I just do what needs doing. I'm too busy, have too much to get done to waste time complaining or explaining or to get frustrated with how things are. But there are days, like today, when the inner biotch comes out and I can't help myself (I'm sure the person who made the comment this morning will never ever make it again..LOL).

Off to "Enjoy my Nice Lifestyle"...(aka, work my butt off.. I have a TEAM meeting at Salamander's school from 2 pm to 3 pm today.. which will take a chunk out of my 'work' day)

And Just Like That...

the tide can change.....

Yesterday was a rough day. Between the incredible heat, two very tired, hot and cranky monkeys, and dealing with some health issues myself, well.. by the time I finally went to bed last nite (uhm, I mean very early this morning), I was pretty deep 'down in the dumps' (and quite angry with the world in general, and certain people in it in specific).

This morning things didn't exactly run smoothly either (I did sleep in until 5 am.. there was just NO WAY I was going to be able to get up at 3 am this morning), so when I finally was ready at 9.45 am to drive to one of my client's, I really just wanted to do one thing: "Go back home, crawl back in bed and not come out for at least 24 hours."

But as THAT wasn't an option, I had no choice but to keep going.

Got to my client's, had productive meetings, got additional information to do more work on this 'dog' of a project I've been working on for almost 2 months now, and I'm starting to feel a bit better about life and the world at large.

Then all of the sudden it's 2.30 pm and I realize that I am actually wrapping up on the 'dog project'. YES. IT. IS. DONE (as in, I'm done with my part, and now it's up to the client to decide how they want to finalize things).

But things got even better. A conversation took place at this client that brought up the potential for a very interesting opportunity. There are a lots of pieces (quite a few not within my control at all) that need to fall in place, but IF they do, things could get very interesting. I don't want to go into any details, as so much is in flux and completely dependent on other people's actions.

But trust me, dear darlin's, if/when certain pieces do fall into place, I'll lobby hard for this particular opportunity. The opportunity would have a significant impact on various, already intense and crazy areas of my life, so I'd have to make quite a few changes (and trust me, any decisions I make will have the boyos' interests 'front and center'. I will NOT do anything that would impact them negatively).

But oh, I want this opportunity, I want this BAD (it's been a long time since BOTH my heart, my brain and my gut have gone "YES, YES, YES!!!" all at the same time). Time to practice the principles promulgated by "The Secret" and "Laws of Attraction". Hey, whatever I can do to guide the various energies in the universe in the right direction...

Feeling a lot better about life and the world in general now.

"Hope and Faith", baby, "Hope and Faith"..

(and I do apologize for being so damn cryptic.. there are just too many unknowns in play as of yet. Ill share more as I can.)

101 Freakin' Degrees Fahrenheit !!!

(in the shade that is), with a UV index of NINE.

I do not want to know how hot it would be in the sun.. My office is about 94 F, and no matter what I do, I can't get the temperature down.. Ah well, it is what it is...

I know, I know, several of you are going right now 'oh, 101 F, that ain't so bad.' And you're right, it is MUCH hotter in other parts of the States/world.. It's just that nobody in this area is used to these kinds of temps.. (and the air quality absolutely SUCKS big time, which is not helping).

Another Rough Nite..

So what's a girl gotta do to get some sleep in this joint????

Salamander was up at 10 pm. Had a bad dream involving ants marching through his room (we had a small ant problem last eve in the kitchen).

Potatey was up at 11.45 pm (had to pee), 12.45 am (night terror) and 2.45 am (room had gotten too hot, so we needed to put the AC on).

I had worked until 11 pm last nite, and got up again at 3.30 am this morning to get more stuff done. So you can figure out how much sleep -I got last nite (not that the boys got that much good sleep either, but they did get a bit more than 'yours truly').

Today is, supposedly, going to be the hottest day of this week (with temps in the 100's, before taking the Heat Index into account). Then the weather is supposed to 'break' tonite and we'll 'drop down' to the high 80's.

I'm going to try to find the 'coolest' place in or around my house (which, truth be told, would be my neighbors' pool.. and tempting though it is, I continue to have a ton of work that needs to get done).

I so hope the weather breaks tonite.. I need some sleep....

I May Need To

Bite the bullet and upgrade my blogger template from my current customized HTML code to the much more user friendly 'blogger layout' format... Blogger has come out with a ton of really neat features, plug ins and widgets that I cannot use because of my 'ancient' template set-up.

I gotta think it over for a bit, as I only went through a template overhaul a short while ago (and getting all my customizations back was a royal pain in the patella). I'm a bit apprehensive about having to do that again..

If I do, I'll let you all know as the blog will probaby be 'off line' for a few days in that case. For now, I'll continue 'as is'..

Quick Update...

Potatey's little hands look much, much better...

As to any sleeptime shenanigans, only time will tell. I cooled his room down to a 'frigid' 68 F BEFORE he went to bed, and then switched his AC unit to the 'fan' setting (which is much quieter than the 'cool' setting). I just don't know that 'just' the fan will keep his room cool enough for comfortable sleeping....

Salamander was tired, tired, tired today.. the heat is getting to him (it's getting to everybody, truth be told). He got quite frustrated with his AC unit when it wasn't able to cool his room down from 92 F to the desired 78 F in less than 15 minutes (being patient is hard.. especially when you are all hot and sticky..). I explained to him that it would take several HOURS of constant cranking of the AC to bring the temperature down that much (and yes, I did turn his AC on WELL before his bed time).

I am sitting here in my office sweating away (as of course my office is on the sun side of the house, and all I've got to cool things down are a few fans). I swear I lost at least 4 lbs today (which is NOT a bad thing). Hey, who needs a separate sauna/sweat lodge? I can achieve the same just be being in my office for about 10 minutes (but it has made for some, uhm, interesting work conditions today).

Back to work...