Saturday, February 28, 2009

Lots O' Loans..

up on Lend4Health...

Please check them out, and contribute to one (or two or more.. and we're talking micro loans here folks) when you can.

Thanks!!

Holy Crap!!!

Sorry, but these are the only words sufficient...

Over the winter time, Salamander outgrew a bicycle helmet he has been wearing for the past 3 years. And he outgrew his bicycle.

The bike helmet thing is especially significant. Salamander has always been on the microcephalus side of things (microcephalus can be one of the soft signs of mitochondrial dysfunction). Fact that he now blew out of the thing over the winter means that we've had some substantial head growth!!!

The bike thing didn't come as a complete surprise.. he's been getting taller as of late.. He will most definitely be taller than his momma (which is not THAT hard.. I'm all but 5 ft 6 inches tall.. barely...)

Salamander is doing OK today.. bit of a bumpy morning... but now that he's outside and running around (biking around?), he's doing much better...

Friday, February 27, 2009

Odds & Ends..

Salamander is definitely responding to the Zithromax. He went to school today (although he was lobbying this morning for staying home 'just one more day, mommy.'..LOL). His nose and sinus cavities are clearing out, and he is not coughing as much anymore. The rash never returned, so I think what happened after that first dose was a combo of the things I mentioned before.

Potatey continues to do well. Just a slight cough, but he looks great and acts even better (which means we've probably caught a temporary break in detox.. which is just ducky by me).

Salamander had his 3rd HB12 shot yesterday. I'm getting better at administering them, he is getting better at managing his anxiety around getting a shot, and his whole metabolism in general seems to be adjusting nicely. Incidentally, we now also have had three nights in a row without any night time accidents. Now I can't say for sure that that's solely the effect of the HB12 shots, as he has been on antibiotics for that same amount of time. It'll be interesting to see what happens once the antibiotics are 'all done.'

My gas bubble I wrote about yesterday (and I took the post down this morning)? Well, I think that may turn out to be more than a gas bubble. Don't know yet exactly what is going on.. I have my suspiscions but I need to get my butt to the docs to get some things confirmed or ruled out. I didn't sleep AT ALL last nite between constant coughing fits and the abdominal pains. So trust me, I was glad I was able to get both boys off to school this morning.

After I got them on the school bus, I went back to bed and slept (oh lazy, lazy me) until 1.20 pm. I am still under the weather, but I am feeling better. And I think I have managed to stave off bronchitis (knock on wood.. I hope I don't end up eating these words.. ).

Both boys seemed to have had a good day at school (no emails or phone calls, and they were both grinning like loons when they bounced off the bus). They have been playing outside in the backyard together since about 3.20 pm or so. The weather is pretty mild today (and expected to turn crappy again this weekend), so I'll let them be outside as much as they want to be.

In the mean time, I am cleaning up my incredibly disgusting house (and I better get back to that before it's time to start the dinner prep).

Oh, and by paying much better attention to my thyroid, hormonal, adrenal gland issues, I've already lost 3 lbs this week. Yeah, I know.. all water weight, and it's very noticeable in my face. NO MORE PUFFBALL!!

Have a great weekend y'all (Salamander has archery practice tomorrow morning and Potatey has a birthday party in the late morning tomorrow, so we'll be busy..)

[oh, and about last week Saturday's dinner? Yeah, yeah.. I know, I need to write about it. And I will. It just hasn't been a priority this week.]

Thursday, February 26, 2009

Nurtured Heart Approach...

Kyra (This Mom) has been blogging about using the Nurtured Heart approach in all daily interactions with her boy. This post got me truly inspired and wanting to check this out more. I just ordered a whole bunch of books from Amazon.com about the Nurtured Heart approach.

Instinctively, I think I already use a lot of the principles... ever since I changed my approach to Salamander's "oppositional and resistant" behaviors waay back in the days after I read Ross Greene's The Explosive Child (and came to the realization that Salamander was not being oppositional and resistant AT ALL. He was expressing, the only way he knew how at that time, that he just could not do what was asked of him, that he just did not understand what people wanted of him. He was crying for help.).

Ross Greene mentions in a few places "Catch your children being good", and that has always stuck with me (so making big To Do's about things done well has become second nature. I do need to work more on not 'belaboring' when things don't go well.)

Looking forward to reading the books. Will keep you all posted.


[still Infirmary over here. Salamander is home from school for yet another day. Not sure if the antibiotics are kicking in (yet, or whether we need to shift to a different antibiotic). I'll keep a close eye on things. Rash has subsided. It'll be 'interesting' to see if it comes back after the next dose. Potatey continues to do well. TG for small blessings. Me? Don't ask....I'm a wreck...]

Wednesday, February 25, 2009

I am officially in 'wanting to curl up in fetal position in a corner of my house, suck my thumb and rock back and forth' stage.
Salamander may be having an allergic reaction to the Zithromax.
Very funky skin rash.
Out of nowhere.


UNCLE!!!!!
I suspect rash may be compounded result of toxins released by 'dying buggies', Salamander's body still working on clearing chlorine from this week end's pool adventures AND the fact that the Zithro contains pink bubble gum colorant/flavoring.
I specifically requested Zithro without all this crap added (as Salamander does not do well with artificials at all), but per pharmacist: "Sorry, manufacturer delivers Zithromax to us with flavorings already added. All we do is compound by adding water." I do believe her, and it's largely driven by this insane notion that medicine needs to taste good so kids will take it.
BALONEY!! Medicine is NOT supposed to taste good.
Rash has calmed down, calendula cream helped. But if rash not gone by tomorrow morning, or if it comes back after next dose, I'll be talking with the pharmacist again to request that they order Zithromax from Pfizer w/o all these additives.
i wish that people would understand that for kids with chemical sensitivities even dosages as small as 1 teaspoon diluted down can create HUGE problems (especially if the metabolism is already strained).
AAARRRRGGGHHHH

And here is Jess' take on the events of Saturday...

I know, I know.. I need to get my sh1t together.. Just gimme a few days, until I know that the antibiotics are working for Salamander and until I've dug myself out of another work related hole.

Can I Just Say It??

I was horrified to see the pics of myself that were taken at the dinner event.

OMG. Trust me, this is NOT what I typically look like.

And it was a major wake-up call.

Sad truth? I've gained about 18 lbs since October of last year. Which places me a total of about 28 lbs above my ideal weight. And I have some hormonal, adrenal and thyroid issues that need to be addressed (hence the facial puffiness).

I don't have any excuses really. Things have been rough on a variety of fronts and I have not been paying attention to myself. At. All.

Bad, very bad.

Time to change that. And I am going to change that starting today.

[there were several mommas at the event who looked absolutely stunning. And I couldn't help but wonder where the heck they find the time or the money to keep looking so good. And then I realized I was being petty and that I was using the 'no time/no money' thing as an excuse to NOT take action. Well, those pics that were taken? I'm going to print them out and place them in strategic spots.. as a reminder. As the next time this whole gang is getting together? This momma is gonna look a heck of a lot better. In fact, this momma's gonna look a whole lot better by the Autism One conference in Chicago at end of May]

^#&#^#&#&#%^ (Doom on Winter Bugs..)

12:45 pm update. Rapid strep throat culture came back negative, which means that Salamander does NOT have an active strep infection (TG for that). He does, however, have a massive sinus infection. As I've pretty much exhausted every other tool in my toolkit, I had to make the decision to go the antibiotics route. So as of 5 minutes ago, Salamander is on Zithromax (and yes, I'll step up my anti gut bugs protocol). I'll continue to keep a close eye on things, as the pedi shared with me this morning that she's seeing more and more sinus infections that turn out to be caused by buggies that are resistant to Zithromax. So if Salamander is not responding in a day or two, we'll have to switch to something else....

####
8:50 am update. Salamander napped until about 8.30 am. Fever dropped to 100.7 F. He wolved down a big breakfast (good sign), chattering non-stop (a feat in itself, with a sore throat). His morning urine was EXTREMELY SMELLY (so I'm 100% sure we have substantial detox in the mix too), I'll be sending it off for testing.

He is acting better than he did when he woke up. BUT he is now complaining of leg aches and a monster headache.

We have a doc appt for 10.15 am..

####
7:35 am update. Salamander had a 101.4 F at waking. Throat is very very sore. He'll be home from school, and I'll be climbing in the phone to schedule a docs appointment as soon as the various offices open (9 am).

Potatey seems much better this morning.

It's interesting .. as a little guy, Potatey's immune system was much more impaired than Salamander's. Potatey at one point was considered immuno compromised (RSV at 3 months, followed by bronchiolitis, followed by a whole bunch of other illnesses, then we seemed to be going into asthma territory (removing ALL dairy and soy stopped that development) and then development of many more food allergies, and then we were going the Colitis route, then I got smart and got Potatey on an extensive biomed regimen as well). But now, 2 years later, he's the one that bounces back so much quicker from illnesses, and if he gets ill, his illnesses tend to be much milder than Salamanders.

Two big differences?
Caught on to Potatey's problems much earlier than I did with Salamander.
Potatey has had MUCH less vaccines than Salamander.

##########
Salamander developed a bad case of sore throat yesterday.. and last nite he had a 103.2 F fever. I've heard that strep throat is doing the rounds in the neighborhood and in schools.

If Salamander has a fever again this morning and if he's still complaining of a sore throat, I'll have to schlep him to one of his docs and get a course of antibiotics (I do NOT want to mess with strep throat - PANDAS anybody?).

And if he does need to go on antibiotics,? Well, then those nice CSA results I talked about in my previous post will go right 'down the tubes' (of course I'll double up on probiotics and increase Salamander's anti-yeast protocol.. but still...).

Potatey is under the weather too, and I continue to feel lousy as well (of course the fact that I have NO TIME to be sick myself and have to keep going is NOT helping).

Will keep you all posted...

[I am seriously considering taking the boys to a nice, warm and sunny place for a long weekend or something.. we need to get out of this cold and bug infested environment...]

Tuesday, February 24, 2009

Some GOOD News..

Got Salamander's latest CSA (for my new(er) readers who may not be as well versed in pee and poo talk - CSA is science speak for Comprehensive Stool Analysis, affectionately referred to in this house as the 'big poop test').

It's looking much, much better. For the first time in 5 years, it looks like we actually have a fair shot at beating back all those nasty nasty bacteria that had taken up shop in Salamander's insides (although we may have a Clostridia spike again.. the good ole' seesaw). Getting sufficient good bacteria continues to be a struggle, but I have hope that, as we're vacating the bad buggies, the good ones finally stand a chance.

Salamander does have some pancreatic insufficiency and short chain fatty acid digestion issues again - but nothing I can't handle. Been there before, fixed it then and got the T-shirt. So we'll do it again.

Lysozyme numbers are way, way down compared to the past two CSAs. TG, I think that means Salamander is now out of IBD territory. sIgA is coming up.. ever so slowly.. Gut pH a little higher than I'd like (hence my suspicion of Salamander having a Clostridia flare again.. and a more acidic gut also doesn't help the good buggies to do their thing).

Bottom line - we're really moving in the right direction. Now I just got to keep this trend going.

Michelle wrote about this weekend's events here.

Mama Mara's (MamaOnTheEdge), Jenn's (Devin's Journey), Tanya's (Teen Autism) and Pixie Mama's stories are up as well...

[and yes, mine will probably be the last.. so bite me..it's easy to just plop quick updates on the blog with a head that feels like it's gonna lift off and take orbit any moment. 't Is another thing altogether to write about deeper stuff.]

One more quick thing though.. it's a real treat (of the Dutch variety??? LOL) to read these amazing ladies' descriptions of me. Wauw. Am I really like that? Well, I am glad I come across that way..means there is hope for me after all...

Still sick.. but got to get it together enough to spend the afternoon at a client's site.

Boys woke up NOT in a good space. Potatey was moody, cranky, grumpy - complained that he hadn't slept well, that his head was hurting. He is congested again too.
Salamander was the total polar opposite this morning of what he was yesterday. Low/no energy, couldn't wake up, looked like a ghost (very pale, purple shadows under his eyes, bright red lips). Complained that he was very tired, that he had a headache, that his body was hurting all over. He too is again congested.

Are they getting my 'bug'?
Is this house making them sick (as I didn't see the 'stuff at waking' while we were gone for a few days)?
Is their ever struggling metabolism trying to clear the chlorine from this weekend's pool adventures?
Trouble settling back into the school routine?
Effects of HB12 wearing off for Salamander?
More detox for both boys?

Hell if I know.. As I am feeling pretty crappy myself, my usual 'we'll figure it out, and then things will settle again' attitude has gone MIA. I just want for my boys to feel good for a few days. Just so we can get our feet back under us...

Off to get my act together...MUST GET SEVERAL HOURS OF PAYING WORK IN TODAY.

Monday, February 23, 2009

And Here...

is one of the reasons I cannot yet write about Saturday's dinner. A comment was left on Jess Wilson's blog in response to her announcement of the dinner event - a mean spirited, spiteful, angry comment. And I haven't been able to get it out of my head.

I'll let Jess do the talking...

I am just going to say one more thing. I am sick, sick, sick, sick to my stomach (literally) of the autism mommy wars. ENOUGH ALREADY!!!

Am Closing Comments - I'm DONE.

So There..

STILL MUCKING AROUND WITH THE BLOG TITLE. I'll get it 'right', eventually....All part of the Journey, eh?

I did it.. changed the blog title... Sometimes you get 'messages' that are so strong that you have to act on them. Not think about it. Just do it.

As I said, not to worry. Web linkies, url's, backlinks, forward links, the whole shebang are NOT changing. You'll continue to find me at http://ourtravelsinbiomedland.blogspot.com/.

I'll continue to write about biomedical interventions as that is such a large part of the boys' treatment programs. But whether we have these interventions in place to address autism, to help the boys with their food allergies, to promote gut healing, to give their much impaired and much suffering metabolisms a kick in the pants, to address sensory processing issues, to help overcome ADHD - who cares.. It is making a difference for them, and that is what matters..

Our Journey, however, is so NOT about biomedical interventions alone anymore. Truth be told, it never was. And it's 'funny' that I only just now, after almost 5 years, am starting to understand that.

Our Journey is about healing, in the broadest sense of the word.
And we'll be journeying for a while longer, as much healing continues to be needed.
And I'd love to have you all tag along for the ride ...


Off to sleep off my drug induced stupor....

We're back... sort of...

The dinner event was.. I just cannot find the right words to describe.

Boys had a BLAST in the water park. It is amazing to see how they progress and change from visit to visit

I am finally succumbing to all the various viruses the boys have been battling over the winter. I was able to stave off the inevitable over the weekend, but I'm going down, down, down...
(mission is to hold it together until 8.15 am when the boys get on the school bus, and then it's gonna be 'crash and burn, baby').

[can I just say this? "I want my mommy...."]

So the details of this weekend will have to wait. John wrote about the event here. Kyra (ThisMom) wrote about it here. Hopefully these will hold you over until I can get my sh!t together again.

Later..

[oh, and Salamander just had an absolutely amazing early morning. Especially considering that this is the first day back to school after the break and considering that we had a very busy weekend. He was incredibly focused and on-task, zipped through breakfast and all of his morning supplements (and there are a LOT) in under 20 minutes!! In a very pleasant and calm mood too, and very little trouble waking up. May I say it, dare I say it? Maybe, just maybe, these effects are due to the HB12 shots? He had his second one last Friday - and he is rapidly overcoming his anxiety around being stuck with a (itty bitty tiny teeny) needle. I will probably give him his next one on Thursday..

Potatey on the other hand was a GRAND pain in the butt this morning..]


One more thing that I MUST add. While I was gone this weekend, a dear neighbor (who is rapidly becoming a good friend) posted the following Old Cherokee Adage.

One evening an old Cherokee told his grandson about a battle that goes on inside people.

"My son," he said, "the battle is between two wolves inside us all.

One is evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego."

"The other is good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather, "Which wolf wins?"

The old Cherokee simply replied, "The one you feed."

This weekend, especially the dinner event, and even more so the 50 minute very lonely car ride back to the water park at 1.15 am on Sunday morning, back to my boys, while I really really really had wanted to stay at Jess' house triggered a roller coaster, up/down, all over the place tidal wave of emotions for me. I am still processing, I am still trying to figure out exactly what it is that I am feeling and why....

Reading this Old Cherokee Adage put some definition around what is going on inside me.. the wolves are battling it out.. and I've been feeding a certain one way too much as of late.

I need to decide.. which one am I going to continue to feed.....I commented to, I think it was Kim, I am not sure anymore, that I wanted, no needed, to change the title of my blog (no worries, the url will not change..). Travelers we are, my boys and I, but the 'BiomedLand' is only a tiny little part of the journey...

Friday, February 20, 2009

What the "H" was I thinkin..

Of course, as always happens when I have a rare opportunity to do something that I really, really, really want to do (dinner on Saturday nite with the John Robison + momma bloggers posse), I end up being obscenely over booked...

I had promised my boys that we would go back to CocoKey Water park in Danvers, MA at some point during the Feb school break (they LOVE that place, and do so well there, despite 'sensory overload waiting to happen'). And yes, of course, we are going this weekend. Leaving later this afternoon, coming back on Sunday.

So right now I am scrambling - packing clothes, cooking foods, packing foods (as the boys can't eat a darn thing in a hotel restaurant), packing supplements, packing approximatelyhalfmyhouseandcrammingitallinmyVWJetta.

I should have coverage for the boyos starting Saturday pm at around 4 pm until whenever I manage to get back to the hotel (sometime between Saturday nite and Sunday morning..LOL) . Positive messages into the Universe, please.

I am totally running ragged, mucho stressed out, so I'm gonna sign off and FOCUS on what I need to focus on (and of course I woke up this morning feeling like total crap.. and the boyos are WIPED (and sore, and a tad cranky) from yesterday's adventure camp).

Oy..

I promise I'll do my best to take pics of the 'gathering' this weekend. Catch you all again sometime on Sunday.

[back to my ever growing 'to do before we can get outtahere' checklist..]

Thursday, February 19, 2009

One Happy & Proud Momma...

Boys spent the majority of the day in an outdoors adventure explorer type camp. They had a BLAST (I picked up two very messy, muddy, soaking wet, rosy cheeked, big grinned, very tired boys at the end of the afternoon..). And they did so well that they're allowed to come back..(not always a given, LOL..)

All kidding aside, the staff is wonderful. And while at first a little apprehensive (severe food allergies, developmental delays, blah, blah, etc etc), they rose to the challenge. And so did my boys.

They'll be going again in April school vacation break.

So Yes..

the rumors are true....
I am actually going to be part of the gathering (well, I am planning on being part of it..) that's been written about here, and here, and here.

Pinch me.. this is so unreal. I still don't know how that happened..

I mean, really.

Here I am, itty bitty 'autism momma' amongst all these giantesses....
I feel like Cinderella crashing the party in the Castle (and while I may not turn into a pumkin at midnite, I may exactly do just that after a few glasses of wine..)

Wednesday, February 18, 2009

Dear Universe..

OH WOW, the loan request for Matthew G has already been fullfilled. Amazing!!!

There are several more very deserving kids up at Lend4Health. Please go over and take a look. Thank you.

For my upcoming 40th birthday, I'd like to request ONE shopping trip involving taking my two kids that is UNEVENTFUL!!

Just one.

Just so I can experience what that's like.

That's all.

P.S. And if I'm asking too much...
How about you strike mute the next old(er) bitty who feels it necessary to engage me in a (getting increasingly louder as I was trying to block her out) discussion around my parenting style while I'm helping my kids work through an 'episode' (trust me, the words 'butt the F#CK out of my business' came awfully close to bursting out of my mouth.. )

P.P.S
Or I'll take a t-shirt that reads "Yes, I am a horrible, horrible mother. Wanna trade places and see if you can a better job?"



THE UNIVERSE ANSWERED, BY HAVING TORI PUT UP THIS LOAN REQUEST.

I HAVE NOTHING, ABSOLUTELY NOTHING TO COMPLAIN ABOUT.
MESSAGE RECEIVED.

Caught Between A Rock..

and a hard place..

As I mentioned earlier this week, Salamander's UTM's are finally showing lead again. Now the lead never really disappeared at all, but we were at trace levels. And had been at trace levels for quite a while.

'Earlier on' in implementing Dr. Yasko's protocol for Salamander, he had several big lead dumps, and then a MONSTER one shortly after starting step 2 of her protocol (July 2007). Then lead tapered off (to clarify - Salamander is NOT taking any chelators beyond a small oral dose of EDTA. He is clearing this on his own - and when these clearings happen, oy. Things get intense).

So you would be inclined to think that he's done excreting lead. That he no longer has a lead toxicity problem. But oh he does, he still does. Considering his age (he will be 11 in about a month) and considering several 'residual' issues, he probably has lead deposits in all major organs, as well as his bones and teeth. And it's not so easy to get at those deposits.

But it appears, from this most recent UTM, that something is happening. Salamander has excreted the highest level of lead since May of 2008. And now that we got things flowing, we need to try to keep it going. Which means increasing those supplements that promote lead detox.

Here's the thing.. I just started HB12 shots as well. There were so many signs that Salamander's B12 levels were tanking again, and he already is taking almost every other HB12 form that you can think off (oral, mouth spray, nasal spray, transdermal patch) - in ever increasing amounts and we're not holding steady.

Now the HB12 shots will help with overall detox (bacterial, viral, metals). I don't know yet whether the HB12 shots will have an effect on his overall lead detox (I sent in a UTM yesterday, so I should know in a week).

So I had a decision to make. Do I wait for that UTM to come back and then decide whether to add an additional layer of detox by increasing the lead detox supplements, with that additional detox to hit sometime next week while Salamander is back in school? Or do I increase the lead detox supplements now - and deal with the additional detox NOW while he's still home with me.

I decided to increase one of the lead detox supplements, and I did so yesterday afternoon. He was very happy when he woke up this morning (which was a small miracle of itself - after yesterday's drama, which was none of HIS doing..). Then at around 10.30 am, he 'crashed'. And from how the crash happened, and his behavioral and physical presentations, I know it's detox related.

He actually went back up to his room to 'take a nap' (not sure if he's actually sleeping, or whether he simply needed to withdraw from the non-stop hustle and bustle in the house). I'll check on him in a bit.

My gut tells me that I made the right decision - we need to get at these lead deposits. But considering how quick the response happened, I won't be giving him the extra lead detox supplement today. His body needs to be able to keep up and adjust. Plus he is in an outdoor camp tomorrow and I want for him to have a good time. And we have some fun stuff planned for this weekend, and we still have a homework assignment to complete. And he's due for his next HB12 shot on Friday.

Caught Between A Rock and A Hard Place....
We need to get at those lead (and other nasties) deposits, but at the same time keep the detox at a level that can be managed, to not affect his overall level of functioning too much, to not affect his daily life too much
[and this is one of those times that I wish I had discovered Dr. Amy's protocol when Salamander was 3 or 4, instead of when he was 8..]

Tuesday, February 17, 2009

Another drama filled afternoon.. (well, more precisely, this afternoon was the culmination of drama building up over the past couple of days).

I am sooooo SICK, SICK, SICK of drama not of my own making, but where I get dragged along for the ride, without any input on the why and what of the ride or where the hell it's gonna end up..

If I wanted this much drama in my life, I would have become an actress...

You all familiar with the term 'being gaslighted' by another person? I wasn't..
Until I read this post (and had a OMG experience) and I started to do some web searcing and reading... It all sounds very (eerily, very uncomfortably????) familiar.....

Monday, February 16, 2009

We Have Lead!!

Remember the day I wrote THIS? I took a UTM for Salamander on the morning of that day too.

Got the results today - highest lead excretion for Salamander since July 08 (when we had the 'inadvertent' exposure), and decent mercury excretion too. Not sure if this lead is the lead he was exposed to then, or whether we are finally (FINALLY!!) getting at the next body stores (as he is clearly a lead toxic kiddo).

Another UTM is going in tomorrow..poor Salamander definitely was on the 'emotions roller coaster' today (up, down, up, down, up, down, and so on and so forth).

Off to help Salamander go to sleep and then it's "24" time for momma...

(Potatey's on the emotions roller coaster too.. and of course they are not exactly synchronized..)

P.S Just (Tuesday Feb 17) got a UTM back for Potatey from a sample I took on Feb 9. Oh boy...
I think we're at the beginning of a new detox cycle for BOTH of them... TG it's school vacation week.. (these two UTMs combined sure help explain all the uppy downy, sensory/auditory overload stuff...)

Sunday, February 15, 2009

Welcome To Detox Land..

Oy - HB12 is definitely doing 'somethin'... It's been an up and down ride.. I really do feel bad for Salamander - he is obviously NOT feeling too good. I'll be doing a UTM tomorrow morning.. it always helps BOTH of us to 'see' what is actually going on.

He was able to go outside for a while this afternoon.. and it did him some good. He has more color on his face.

Time to coral Potatey and get HIM off to bed..,

Is Gonna Be a LOOOOONG Day..

Two kiddos in various stages of mood swings and detox.. It's gonna be a bumpy ride today.

At least I got to sleep in until 7.30 am, as Potatey slept in (which he NEVER does; and of course that means he'll be up at 5 am tomorrow morning..LOL).

Sun IS shining, but it's COLD.. I hope to be able to get the boys outside for a bit later today.. (Salamander right now is sitting on his bed in a large sunny spot.. you can almost hear him purr.. like a big cat). We all are in desperate need of some good Vitamin D receptor stimulation...

Saturday, February 14, 2009

Salamander's First HB12 Shot..

UPDATE @ 2.45 pm on V-day
Well, I think the HB12 honeymoon phase is rapidly coming to an end. I am seeing all the usual signs of 'HB12 is being absorbed and now junk is coming loose as the various metabolic cycles have just gotten a kick in the pants'. So if I go MIA for a little while, you know why..

QUICK UPDATE @ 9.15 am on V-day:
So far, so good. Salamander woke up in a good space, very aware & plugged in. HAPPY! This is a fairly typical response of his whenever I increase his HB12 levels. Which means that in about 1-2 days the bottom will drop out and things will go kooky. Ah well, it's the vacation week, we'll deal with it..

Gave Salamander his very first HydroxyB12 shot tonite. He did "OK", never really noticed the needle 'going in' (it's an itty bitty needle). The shot did sting a bit (momma needs to let the stuff come to room temp a bit longer next time), so he had a bit of a rough time after. He bounced back very quickly though and now he's fine.

And now we're in 'let's wait and see what this does'. With any other B12 he is on (oral, transdermal, nasal, mouth spray), we typically get a 24 - 48 hour 'honeymoon', where you can see that his body is absorbing and using the B12 (he is severely deficient). And during that time, Salamander is in a super duper awesome space. And then, boom, the bottom drops out as detox begins. I fully expect this to be the same, I wouldn't be surprised if he goes 'straight' into detox. Well, I have my UTM kits ready to go if that happens.

Will keep you all posted..

Men are Idiots..

Well, OK, fine.. I'll concede the point. Some men are such incredibly self absorbed idiots that they give the rest of the species a bad name...

Yup, 't is been that kind of a day...

Friday, February 13, 2009

How About..

Chase's loan has been funded!!! Let's keep rolling on Aydan's...

a little $13 on the 13th action for the loans currently open on Lend4Health (or if you prefer $14 for Valentine's Day, which is the 14th)?
Chase's loan is almost funded, and Aydan B's loan is moving nicely too.

Let's turn the believes in regards to Friday the 13th around!! It's a day of New Beginnings!!!

[and you know what is absolutely thrilling to see? That monies from loans that have been paid off are immediately being funneled to other loans..]

Thursday, February 12, 2009

Can't "Go There"..

There is an enormous amount of traffic on the web right now regarding the decisions issued today by the Autism Omnibus Court, as well as the Sky Walker Autism Murder Case.
And while I have my opinions and thoughts around both, I just can't go there. If you feel so inclined you can pop over to the Age of Autism site and read all about it.

Truthfully? Neither the decisions, nor the murder case will change anything that I have done, am doing or will do for MY boys.

Yesterday...

Yesterday..

I kept Potatey home from school. He had a fever when he woke up. Nothing major, MAJOR, but enough for me to say (especially as we've been in back-to-back illness now for over 4 weeks) 'you're gonna stay home'.

Potatey spent most of the day happily puttering around. Building lego constructions, talking with me about school, his friends, sharing lots of very unique thoughts that make Potatey Potatey.

We took a drive together to a large Nature Reservation in the next town over. They organize very good nature camps, and I needed to get the boys signed up for a day for next week. Potatey LOVED our drive. It was sunny out, we rolled down the windows, "Look at this mommy", "That is so pretty mommy", and "It's so much fun to just be with you, mommy" (poor guy, he IS the sandwich kid - mushed between his brother and his brother's needs..).



Yesterday...


I prepared pizzas for the boys during the day. Potatey helped me prepare them. Finding ingredients, making suggestions. So all we would have to do upon getting home later that day was to put the pizzas in the oven.

Yesterday..

I worked very hard on getting several issues resolved at Salamander's school. And thanks to one awesome TEAM member (who completely 'gets it'), the issues WERE resolved. The Salamander that Potatey and I picked up from school radiated a "happy, content, feel good in my own skin" energy (much much different from the day before's "rage, overwhelming anxiety, sadness" energy).

Salamander zipped through his homework while we were driving, and then spent the rest of the drive playing games with Potatey, reading to him, making up silly rhymes. And Potatey soaked it all up.

Salamander worked hard in tutoring yesterday. He is almost 'done' with the math program and next week we'll officially start tapering down from the intense instruction schedule. Per his therapists, he was "on, great focus and attention, great persistence when things get tough."

Potatey played in the waiting room - he realized how tired I was and said "go take a nap, mommy" (the Norwell center has a very comfy couch). And he took out pencils and found a note pad in my bag - and drew pictures for almost 25 minutes while I snoozed.

Yesterday..

The boys played together during Salamander's breaks. They had such a good time together.. and all staff came out with big smiles on their faces, and watched them..

Yesterday..

The boys devoured their pizzas and got through their supplement routine 'just like that'. They both fell asleep easily and by 9.15 pm all was quiet.

Yesterday..

I was only going to sit down for 15 minutes. I fell asleep and didn't wake up until 2 am (!!). I then crawled off to bed. But that did mean I didn't get done all that I needed to get done for the boys' Valentine's Day/100th day of school parties (special snacks, special drinks, print out Salamander's friendship poem, pack up the boys '100 things', write the Valentine's Day cards for classmates..).

But as yesterday was a pretty good day, I figured I could get it done this morning.

Today...

Salamander woke up at 5 am (the time I was getting up too) - he needed to go to the bathroom and then had trouble going back to sleep. He needed me to stay with him for a bit, which I did.

Potatey then woke up at 5.30 am. Same deal.

I made it downstairs by 5.50 am. Got the brownie mix prepared and in the oven. Thursday morning Pancake mix followed. Finished and packed up Valentine's Day cards. Packed up 100th day of school projects. Wrote Salamander a special card for his lunch box.

I got up feeling absolutely horrible (I still do... I am writing this from my bed with umpteen blankets wrapped around me and I cannot get warm). Jello in the head, no processing, no motor planning, very light headed.

Potatey was up, again, at 6.10 am. Needed my help once again. I helped him go back to sleep, once again.

I can feel my anxiety levels start to rise. It's now 6.25 am and I haven't even started yet on the boys morning supplements and lunch boxes. Plus I am really not feeling good, so I am not exactly quick in getting things done either.

Boys get up at 6.45 am - they are both dragging butt. I am trying to hurry them along (as the minutes are ticking away), they are resisting. I get more frustrated and anxious. Still so much left to do

Today...

Things got ugly at around 7.50 am. I completely and utterly lost my temper - over some really stupid sh1t. I yelled and screamed at my boys, even threw things.

I scared my beautiful boys out of their minds.

Today..

I realized what I was doing. How unfair I was being to my boys. I apologized to them, we talked things through. And then it was time to get ready for the school bus.

Potatey was fine by the time we got to the bus stop - he's quick to bounce back, quick to move on. He even teased me mercilessly about the fact that I 'said a lot of bad words, mommy, now YOU have to put quarters in the jar." [something I had started with Salamander when his language started becoming a little too 'salty' - school buses are the devil's playground].

Salamander, however, was still shaky (literally and emotionally - I am so much his anchor and when you see your anchor lose it like that - well, I can only imagine how scared he must have been).

And I feel terrible..


Yesterday was a really, really good day.
Did I f#ck it all up, by projecting my bull sh!t on the boys today????

Wednesday, February 11, 2009

't Is a blessing that some of Salamander's team members have (now older) kids with ASD themselves.

You can be trained on how kids with ASD present, you can get degrees in special education and child development, you can have worked with them for umpteen years. You really do not 'get' what it's like until you are raising one (or more) of your own - it makes you very present to their day to day struggles. It makes you realize that what may look like a small issue is not such a small issue at all.

[of course there are a few, rare, exceptions in my and the boys' life who do not have ASD kids or even ASD family members themselves but who still completely and totally 'get it'. Those are true GEMS. You know who you are.. LOL.. as I ain't shy about expressing that sentiment].

Things are moving in the right direction with Salamander's current issues at school....

I was very angry and frustrated last night, but TG I decided to NOT email school last nite. Instead, I 'slept' on things (well, not much sleeping happened actually) and approached things with a 'cooler, calmer' mind this morning. And while at first it didn't look like what I was trying to explain about Salamander was completely 'registering', I think thanks to the TEAM members I mentioned earlier, the message was received and worked with accordingly...

We'll see, we'll see... TG it's almost February break..

Tuesday, February 10, 2009

PUT THE PREVIOUS POST BACK UP - It's a necessary one in the 'where I was at and where I ended up' process...

Had to take my previous post down. A lot more was brought to my attention and I am very confused as the way situations are being presented just does NOT fit with the Salamander that I know and love so much. I need some time to sort through it all, and how to present things to school. As there are only 3 days left before February school break, I am going to try and 'buy time'. As in - let's be kind and patient with each other during the next couple of days, let's give Salamander some extra emotional support & 'the benefit of the doubt', and I'll work with him on getting things stable and figured out of the February break. Then let's start with a clean slate AFTER February break and see what happens then.

To be continued....

[Michelle, thanks for commenting on the previous post, and yes, you were so right]

Okay...

so now I'm extremely PISSED OFF.

Can't blog about it yet, need to give the other parties involved a chance to reply to MY reply to the issue that they brought to my attention.

[two hints - I've tweeted what I'm frustrated about, and I just left a comment all the way at the bottom of Michelle O'Neil's Lend4Health post. It steals her phrase "Asperger's = not being a brat"]

Reality Check....

Well, so much for me maintaining bloggy silence today eh?
But I just read this post by Dan Olmsted. And I just HAVE to get a few things out - To-Do-List be damned.

Is Mr. Olmsted's post very gloomy? Yes
Do I hope and pray that none of things he lists will come to pass? Yes
But could all that he lists come to pass? Yes

I have endless admiration for the warrior moms and dads out there that are 'Hill stormers', 'sh1t raisers', 'representative harassers', 'outspoken advocates', etc. etc. etc. What they do and how they do it is oh, so necessary.

And I so cannot be one of them.

I get all the Action Alert emails, some days there are four or five of them. And I want to take the actions asked for. And when it involves letter or email writing, I do.

But anything else? The 'make calls', the 'visit your rep', the 'prepare briefing packages', the 'organize grassroots action teams in your home'? I just can't.

And I do carry a lot of guilt over that.

And I have endless admiration for those (several of them are dear friends) who can, and do, and will. On top of everything else they have going on.

For me, what Mr. Olmsted describes feeds directly into my 'I can't spend half or more of my days on letter writing, calling campaigns, visiting my reps, preparing briefing packages, attend grassroots meetings.' issues. What IF all that amazing 'hell raising' activist work that's being done is not making one iota of a difference (pessimistic view? Perhaps.. Realistic view? I think so)???

I have made a deliberate choice to spend my time where -I- think I can make the most difference - on getting MY kids well, on getting MY kids to a point that they can lead happy, productive, independent lives. And I know that all those amazing activists out there work on exactly that too. But me, I cannot commit to AND getting MY kids well AND raise holy hell. I will end up doing both things half-assed.

And I can, no I WILL NOT, do a half-assed job for my kids (and again, I know several amazing activists out there who appear to be able to do both extremely well).

And I being selfish? Possible
Am I being a 'coward'? Possible.
Do I like the right 'warrior spirit'? Possible
Do I just don't care about all the kids that are suffering, about the 'new' kids that are getting diagnosed every single day? So UNTRUE.

Let's just say that I know my limits.

What I can do, what I WILL do, is to continue to share my boys' stories; of what happened to them, how I figured things out, and what it took and is taking to get them better, where they were and where they are now.

I will share here on the blog, and in conversation anywhere I go.

And over the years, I have noticed that more folks are starting to pay attention. They may not believe it all, they may not be ready to commit, but listening and paying attention they are. And some make small changes, some make big changes, some do more research, some pass my stories on to others.

And I guess that's the brand of activism I'm comfortable with, that I do best.

As at the end of the day, when it's my time to move on, I want to be able to look at my boys and their families (however they chose to build their own families) and say "I played a part in that."

So to all of you amazing, incredible, powerful, dedicated 'hell raiser' activists out there - keep doing what you're doing for as long as you are able to. And forgive me for only doing something with maybe every 6th or 7th 'action alert' that comes my way.

And if you deem me selfish, not a 'warrior mother', not 'commited to The Cause enough', or a 'coward' for that, so be it.

Gonna Be A Crazy Day...

So I probably won't be posting today (or much, much later today)....

Put out 18 gazillion 'fires' that came at me out of nowhere CHECK

Laundry CHECK
Pick Up House (think "fragmentation bomb") CHECK
Valentine's Day Cards CHECK
Valentine's Day Treats
School Supplies (love those notes that come home and say 'we need X, Y and Z, and we need it 2morrow') CHECK
Groceries CHECK
CC Bills CHECK
Vacation Camp Arrangements CHECK
HB12 prescription NASAL SCRIPTS DONE, SHOTS PENDING
Invoices
Business Meetings ALL RESCHEDULED :) (NO, NOT BY ME..)
Work on PAYING projects
Start on arrangements for visit to Water Park end of next week
2.15 pm Race to Salamander's school to pick him up for tutoring @ Lindamood Bell CHECK

Bye...

Monday, February 09, 2009

Please read Michelle O"Neil's post on Lend4Health..... Michelle, thank you!!!

Charlie Is Going Home...

Charlie (my friend Jeanne's little boy) is on his way home from the hospital!!!!
I'll let Jeanne do the reporting (if she so chooses) about the how, what, why and when of what was going on with Charlie. I'm just so glad he's going home....

2.15 pm - I just heard from a little birdy (tweet - hint.. hint) that Charlie's loan on Lend4Health HAS BEEN FUNDED!!!!! This is turning into a good day, a good, good day.....

Sunday, February 08, 2009

Charlie - Update

Charlie (Jeanne's little boy) is still in the hospital. It looks like the docs want to keep him for another nite. Investigations continue to be ongoing (oh, how I know that powerless feeling when every test under the bleeping sun is being run and nobody seems to know what's going on...).

Please, keep sending prayers, good thoughts and good wishes into the Universe for Charlie (and that he may be able to go home and sleep in his own bed soon; and as an extension of that - may his momma get some sleep too).

Love, love, love...

There are days I have had it to over my eyeballs with being the sh!t, p!ss & puke patrol...
(on top of being mediator, coach, negotiator, physical & emotional buffer, etc., etc., etc., blah blah)

Yup, rough morning.. Fu-ul Moooooooon!!

Saturday, February 07, 2009

Not a Good Day...

So today is officially the 5th anniversary of Salamander's first official diagnoses. And typically, I will try to stay very busy during that anniversary.. as when I slow down, my mind tends to go 'back there'.

Today has been a rough one. Salamander woke up in a GREAT, GREAT, GREAT mood. But his mood has been deteriorating over the course of the day.. and right now, he is in a 'spitty, snarly, hissy, whiny, rigid, locked in his POV, look at me the wrong way/say the wrong thing and I'll blow' mood (first 'mood slide' happened after he returned from archery with his dad, second more major 'mood slide' just occurred now.. after coming back from the movies with his dad and Potatey). Potatey of course is now starting to 're-act'.. (he's a bit snarly too). Yup, momma is on DEFCON 2, and on ready alert to go to DEFCON 1 at warp speed...

I am tired today, I am not feeling good, I look like sh1t (or so I was told by the boys' dad - well, yeah, considering.... and yes, I am prime target for getting the flu next, wouldn't you say). And I am worried about Salamander (as I can't seem to talk him 'off the ledge' - in fact, I better get off the blog, as he's escalating.. WELL, THE VULCANO DID BLOW.., HE'S A BIT BETTER NOW ). I am worried about my friend Jeanne's little boy.

I have trouble 'seeing' right now how far we've actually come in this crazy ride, so I'm gonna link back to things I wrote earlier (adding one more link). I'll read over it myself as a reminder, later tonite, after the monkeys are in bed..

BLEEGGHH!!!!!

[signing off.. going to crawl on the couch w/ a bunch of blankets. I just can't get warm.. and I am soooo tired...]

Please Send Lots of Good Energy (& Cinco De Linco)

[UPDATE ON FEB 7, 9 am - Charlie is once again not doing so good. As he's not my kiddo, I can't get into 'his business'. Just asking you send lots of good thoughts, prayers and well wishes into the universe for him]

to my dear bloggy friend & "sister in arms" Jeanne. Her sweet little Charlie has hit a rough spot...

Jeanne, if you happen to drop in here, I emailed you a few thoughts. Also, call me anytime you need to.
[Update on Feb 6, 11 am - Jeanne is reporting that Charlie is doing much better. Yippieieieie!!!!]

And although all of us would have understood if Jeanne didn't have time to promote 'Cinco de Linco' day on Lend4Health, she stuck with her commitment anyway.
So without much ado, pop over HERE for the monthly Cinco de Linco announcement.

And while Jeanne seems worried about a 'perceived' conflict of interest as the sole loan up right now is for her Charlie, I have no such reservations. Especially not in light of Charlie's current struggles.

So if you have some change floating around that you want to give a good home, there is nobody more deserving and in need right now than Charlie. The sooner these tests can be run, the sooner there will be answers to help Charlie get back on track.

Friday, February 06, 2009

Odds & Ends...

I'll be participating in THIS a bit later today. Very much looking forward to it.. the good ole braincells are in desperate need of a work-out. [Update at 1 pm: Very disappointing telecon. Not much discussion of science. Regurgitation of same ole tired mantras. Dr. Jon Poling just joined the call...Hannah Poling's mom just joined too (sorry.. forgot her name) - is stressing need for utter care in exposing child with underlying mito disorder to viral and infectious stressors, as those can trigger a 'mito' episode... No kidding.. Kinda seeing that right now in Salmander]

Salamander is back into 'voracious reading mode'.. and I am THRILLED!!!! I'll be working on a larger 'what Lindamood-Bell programs did for Salamander' post as I have time today and tomorrow. And along those line, math is going really well too. Math facts are now solid and are becoming more and more automatic (something they accomplished in a little over 32 hours that school/I have not been able to accomplish in 5 years; the teaching/instruction methodologies used obviously can make a HUGE difference). The Norwell center office manager asked me yesterday if I was willing to become a reference for parents of kids with similar profiles to Salamander's, and I gladly accepted. Sure the program is NOT cheap, but then again, all good programs come at a cost (I've learned the hard way that cheap & good do not apply when it comes to programs for our kids). But look at the Return on Investment here...

Got inquiries from Salamander's teacher yesterday as to why Salamander is so 'very exhausted lately'. I clamped down on my immediate 'you got to be kidding me, he's only been back in school since last week Thursday. He just had the flu' knee-jerk response, and instead just provided factual information to address the question. As in "He just had the flu. He has a mito/meta dysfunction that affect his energy levels to begin with. Flu made it worse. It'll be a while until energy levels come back up, we're working on it. Crazy winter weather is not helping. Keep me posted and let me know if his fatigue levels interfere with school work." We'll see what comes back.

Am taking BOTH boys to an "Arts and Crafts" event at Potatey's school tonite (yes, two kids.. by myself.. ). Salamander was resistant to going this morning, but I explained to him that I will NOT break a promise that I made to Potatey (plus Potatey is missing out on enough 'just regular kid' stuff as is), that I expect Salamander to come along, but that he can bring his MP3 player and a book and that he can use those 'to withdraw' for the duration that Potatey and I will be doing craft stuff.

Got to get scrambling on making arrangements for a school vaca camp for Feb vacation. I had wanted to take that entire week off - is not going to happen. I missed almost 3 weeks of solid working time and I am waaaay behind. Boys have indicated that they really want to go back to the indoor Waterpark that we visited two times before. I'll try to set that up for the Friday/weekend at the back end of the Feb vacation week (and yes, we won't be taking Daddy along this time...).

Off I go now.. have a bunch of things to get done BEFORE noon time..

Thursday, February 05, 2009

Confession...

[now don't all gang up on me, OK?]

I do not like Jenny McCarthy's book Mother Warriors.... I got it earlier this week, together with Poisoned Profits, The Toxic Assault on Our Children.

I read a few chapters from Jenny's book and then had to put it aside. Can't articulate yet clearly why my hackles are up. It has nothing to do with Jenny herself. I've seen her speak in person and in TV appearances and I love the fact that she tells it like it is. It's not her writing style either; "Louder Than Words" sucked me in from the first word.. (and turned me into a blubbering mess). This one? Not so much..

Now the Poisoned Profits book on the other hand? OMG.. There is an absolutely harrowing description of the toxic assault kids experience in a "normal" (meaning NOT green) household on a "normal" day... No wonder so many kids are so incredibly ill....

Now THIS I Can Completely Stand Behind..

Please read Angela Warner's (Autism Salutes) absolutely amazing letter to First Lady Mrs. Michelle Obama . I really, really hope that this letter gets to its intended destination and that it is read....

Wednesday, February 04, 2009

Could NOT Resist...

As indicated in the header to my blog, I ain't no fan of Emily Perl Kingsley's "Welcome to Holland" that every freshly diagnosed parent gets thrown at them. I do NOT find it inspiring at all. In fact, I find it very very very condescending, and it completely trivializes what our kids go through (and hello?? I am DUTCH. I KNOW what Holland looks like, and what dear Emily describes ain't it)

There was/is a little FB discussion going on where two pieces were referenced that are much more up my alley: "Holland Schmolland" by Laura Krueger Crawford, and "Welcome to Beirut" by Susan F. Rzucidlo.

Welcome to Holland & Holland Schmolland can be found HERE.
Welcome to Beirut can be found HERE


What on earth made me (re)post these today?
Well, I have one child who for the past 4 days has been blurting out "Ding Dong, Hit the Monkey" or "Jingle Bells, Monkey Smells" (almost Tourette's like) every time he gets anxious or stressed out.. which has been about every 45 seconds or so (there is a reason why I avoid OTC meds with Salamander like the plague.. until I really have no options left - they really f#ck with his GABA/glutamate biochemistry, and epi/norepi ('fright flight') balance and his ACE pathway. And I wouldn't be surprised if we have a (hopefully temporary) spike in Gamma Strep levels). You can all imagine how well THAT is going over in school (his friends think he's hilarious and just being the class clown.. school staff? Not so much. TG they have past experience with his vocal outbursts and the 'OTC meds phenomenon') - which of course is adding to Salamander's stress, which then of course makes makes the vocalizations worse...

Update on Feb 6, 2009; 11 am. I am happy to report that Salamander's involuntary vocalizations have stopped.. I think his biochemistry is stabilizing again...Will be keeping a close eye on things though..

And then Potatey (as I really boosted his antiviral and immune system supplements to hopefully stave off a repeat of the Flu Chronicles) has gone into a more intense viral (and I suspect metals too) detox, which is triggering a lot of anxiety (oh, the stress on that good ole' ACE pathway) - as soon as I move more than 2 steps away from him, or God Forbid, disappear from his vision, he totally and completely FREAKS out. [just got a UTM back for Potatey for a sample I took on Jan 27 - at just about the time he started showing 'flu' symptoms. Elevated lead excretion!! And arsenic is up too]

It'll pass (or more precisely, I'll get things back under control), it always does. But right now, "Ding Dong, Hit the Monkey", "Jingle Bells, Monkey Smells" and "MOOOOOOOOM, Where ARE you!!!!" on a never ending continuous LOOP don't make for a "Trip to Holland."

I Believe....

[my apologies in advance if what I am about to share offends anybody. No offense is intended, I am merely jotting down my thoughts. This week will be the 5th anniversary of Salamander's first official diagnoses (AS & NLD), the 5th anniversary of officially (as I suspected things were 'off' for much longer than that) 'having a horse in this race'. And truth be told, I suspect to be 'in the race' for at least another 5 years, if not 10. And THAT is making me think about where I was 5 years ago, and where I am now]

I continue to believe that Autism is a garbage diagnosis - assigned when medical professionals either can't or don't want to take the time to figure out what really ails the child.
I continue to believe that a lot of children with "autism" are physically very very ill.

I believe that Autism really should be "Autisms".

I don't believe that all Autism is genetic, nor do I believe that all Autism is environmentally induced.

I believe that Autism occurs when an underlying genetic vulnerability forms a very unholy alliance with environmental insults and immune system deficits.

I believe that Autism is much closer related to a metabolic or mitochondrial disorder/ dysfunction than is currently recognized or acknowledged (why hardly anybody in the traditional medical community recognizes the 'multiple organ system involvement' piece in so many kids with autism greatly vexes me.)

I don't believe that Asperger's is different than or from Autism. Autism is a spectrum disorder - with Kanner's on one end, and ADHD/LDs on the other end. Asperger's falls somewhere within that range (and even within Asperger's there is a range of 'affectedness')

I don't believe that all Autism is mercury poisoning (but that doesn't mean that some of the kids with Autism aren't mercury poisoned)

I don't believe that all Autism is caused by vaccines (but that doesn't mean that quite a few kids with Autism aren't vaccine injured).

I don't believe that all vaccines are 'evil' (but that doesn't mean that there isn't a sub population of kids that are more prone to Serious Adverse Events - including my two).

I do believe that some vaccines are plain old ridiculous (and dangerous) - Hep B, varicella, MMR, flu, HPV, just to name a few.

I continue to believe that ALL kids with autism can benefit tremendously from biomedical interventions.

I do believe that not all kids with autism will respond to the same extent to biomedical interventions, and I also believe that you need to commit to biomedical interventions heart, soul (and pocket book) for at least 2 years before you give up.

I don't believe that kids with autism can 'recover' from biomedical interventions alone.

I do believe that 'recovery' (although I prefer the term 'remission') from autism is possible, but I also believe that what that recovery entails depends very strongly on the definition used (I'm sorry.. but 'just' loosing the DSM-IV diagnosis does not recovery make)

I no longer believe that 'everything happens for a reason'. Sure, there are certainly situations where this does apply. But not when it comes to the suffering of our kids, the daily challenges that our kids fight to overcome. I get extremely irritated when I get 'well, everything happens for a reason' thrown into my face when it pertains to my kids. In that context, it's a tired, tiring, insulting, demeaning and invalidating cliche that ought to be banned from the English language.

I do believe that each and every parent of a child with challenges has the child's best interests at heart and knows their child best.

I no longer believe in the 'parent partnership' or 'parent team'. Sure there are a lucky few of you out there where the male parent is 150% committed to helping the child be the best they can be. But in the majority of cases, it all rests on mom's shoulders (with 'daddy' off pouting somewhere as his life is not turning out the way he had planned).

I no longer believe that "Doctor knows best."

I believe that all moms have an inherent instinct about their kids. LISTEN TO IT AND FOLLOW IT.

And in the end, just like I was 5 years ago when I first tentatively sat down in a seat on this crazy, f#cked up, roller coaster from hell..

I am simply a mom who will fight to the death for her childrens' mental and physical health.

Another Quickie

BOTH kids on the school bus this morning (Hallelulah.. we'll see if it holds..) after a 1 hour delay as we had another 5+ inches of snow dumped out here (I was out there shoveling thrice - once at around 3.30 pm, and another time at 10 pm, and then again at 4 am this morning.. Then a neighbor took pity on me and plowed out what remained of my looooooong drive way).

God, it is pretty outside.. if only it wasn't so much WORK to clean it all up. Today it is going to be COLD (which will make for a nice layer of ice) and then tomorrow it's supposed to get warmer again. We'll see.

Off to take a few pictures, and then time to get ready for MY day .. I have a business meeting at 10 am , which I am obviously going to miss. But I should still be able to keep my 11 am commitment and after that the usual run around starts (groceries, bills, get Salamander from school at around 2.15 to take him to Norwell, blah blah).

Later..

Tuesday, February 03, 2009

I want a do-over for the hours between 4.20 pm and 6.20 pm....I was in a stinky mood and I took it out on my beautiful boys...

And I feel horrible about it (yeah, yeah.. I KNOW, I am human..)

Alas, there are no do-overs. Only regrets and guilt... Lots of guilt.

Potatey home sick.... Another snow storm rolling in... Having to take Potatey with me as I take Salamander to tutoring in Norwell in the late afternoon (where even more snow is predicted than here).. Trying to get work done while at the same time caring for Potatey.. Computer keeps crashing.. Hi speed slow as a slug (%^#&^%&$^).. Lindamood Bell tutoring got cancelled due to predicted snowfall... Emails & call to Salamander's school to tell them to put him on the bus home instead of me picking him up at 2.15 pm...Need to reschedule 3 pm work conference call... Overnite 4 more loads of smelly laundry appeared that need to get washed ASAP... Need to pay credit card bills before late charges hit...

And then I read this, and this. Thanks Jess, I SO needed to read these words..
(and aren't our kids amazing? Not aware of what's going on around them, no empathy? Bah humbug..)

Adding THIS.. a resolution I hereby pledge to follow...(within reason of course, as my kids' needs will always come first and be front and center.. That's simply how I operate. But a little more 'ME" time is not gonna hurt..)

Monday, February 02, 2009

Chili recipe posted

Quickie..

Potatey is definitely battling something. Symptoms right now similar to what Salamander was displaying at the beginning of his flu 'adventure'. I hope I can keep Potatey's symptoms under control so it doesn't get quite that crazy. Potatey did go to school this morning (something I do NOT feel good about and am not proud of having done), but I HAD to get Salamander back into the Lindamood Bell tutoring routine (he missed 2 weeks!!!).

I fully expect the nurse at Potatey's school to call me to come pick him up (in fact, I'll be really surprised if that doesn't happen. And if it doesn't, well, then that gives you a good sense of Potatey's toughness).

I already made the decision that if tomorrow Potatey is the way he was this morning, he gets to stay home from school (and then I'll have to schlep him with me to Salamander's Lindamood-Bell tutoring session tomorrow afternoon). We'll cross that bridge when we get there.

Salamander glided right back into the Lindamood-Bell programs (we will use this week to finish up on the Cloud Nine math program). He DID need a little bit of coaching and a little bit of review of strategies, but that's to be expected after a 2 week hiatus. He really is getting to a point that he's solid in his math principles - and the only way to become more automatic and fluent is practice, practice and more practice (I however am THRILLED beyond words that after 5+ years of drilling on math facts with flashcards and almost no success in getting Salamander's brain to retain these facts, 4+ weeks of intense instruction using the Cloud Nine program seems to be doing the trick. Salamander is DEFINITELY a lot more confident in tackling math problems.. ).

Off I go.. tons of stuff to get done, and one eye glued to the phone waiting for Potatey's school nurse's phone number to appear on my caller ID..

Sunday, February 01, 2009

Well, well, well...

Guess who has reappeared???

Oh no,
Oh yes!!
It's Da Suit.

Karen, you are Da Bomb.. I laughed my butt off the whole time I was reading your story (and God knows I needed a good laugh..). Wonder where she'll go next....

Thought Provoking

This came in through my twitter this morning. I need to read it a few more times to be able to get my thoughts on this out in a coherent fashion.


[and no, the fact that the writer refers to some of the behaviors displayed by FB, twitter, internet, yahoo & google groups, YouTube, Blackberry, etc addicts as "Internet Asperger's Syndrome" does not offend me. I get what the writer is trying to say. Personally I think the terminology Internet Induced Narcissistic Personality Disorder is more appropriate]