Saturday, May 31, 2008

TMS = Cool Stuff

I had linked a couple of days ago to a relay of John Robison's experience with a novel treatment called TMS. I haven't read enough about the actual mechanics and science behind it to be able to describe TMS, so I'll link to John's explanation.

What TMS has done for him can be found here.

And he just posted another person's experience as well.

Well worth the reads.. the 'this is what it was like before' and 'this is what it was like after' parts gave me goosebumps...

Friday, May 30, 2008

What a Relief!!!!

Got Potatey's Quarterly Pre-K Developmental Assessment today...

Immediately read through the "Social and Emotional Development", Approaches Toward Learning", and "Language and Communication Skills" categories.

All skills in these categories are FULLY MASTERED.

Of course I knew he was doing well and that developmentally he is right on track (even a bit ahead I would say). But man, what a friggin' relief to see this reflected in somebody else's data too.

Oh, totally different topic. How do you all feel about EMR/EMF? Salamander has spent quite a bit of time in a Prius as of late, and I've seen some, rather concerning, reports regarding EMR/EMF emissions of the Prius, especially when sitting in the back seat...

Dr. Offit - The Mean "Vaccine Quote" Machine...

Dear Dr. Offit,

Just. Get. Off. It.


Picked up the first harvest of the growing season today, from my organic farming co-op.
Arugula lettuce, radishes, spring onions and garlic..

I am using the arugula and the radishes to make a nice salad.

Quick Update..

from the 'Asylum of the Permanently Insane' (tongue in cheek, tongue in cheek. If anything, the insane part is a reflection of ME, not the monkeys)

Potatey slept last nite, from 8 pm or so on until 6.30 am. Only woke up only twice (11 pm and 5 am), so that meant I got some decent sleep too.

Issue yesterday at Potatey's school discussed and, for now, resolved.

One work project 'semi' back on track. I'll have to keep working over the weekend on getting it completely back on track. I had to put the second work project aside for today, hope to get to that one tomorrow or Sunday (yup.. in the hours before 6 am, or after 9 pm..)

Still trying to process the little 'bomb' that was dropped on me during Salamander's doctor's visit yesterday. My 'little' guy (well, not so little anymore) is 'going to go into puberty any day now'. He just turned 10!!!! (intellectually I knew this was going to happen.. emotionally I am so not ready for this..). It is going to take me a little to process this myself first, and then to help Salamander process this.

Back to work...

Thursday, May 29, 2008


Not a good night last nite, not a good day today.

Potatey is having sleep issues again (which means I've had about 7 hours of sleep in the last 3 nights combined), there were issues during Salamander's doctor's visit today. Potatey got into trouble at school (which is highly unusual for him). My work projects hit 'bumps' and my clients are NOT happy about it, and payment on several of my BIG invoices from April (!!) has been delayed (the good ole 'well, the check is in the mail' thing). I am running out of time in pulling Salamander's summer camps together. I have 18 million medical forms to get completed and can't get through to my pediatrician's office. And so on, and so forth...

In summary, the past 24 hours just plain old STUNK!!!

I am tired.. 'Faith' and 'Hope' are failing me today. A very dear friend took one look at my very messy kitchen tonite (my kitchen is ALWAYS organized.. how else am I going to be able to do all the cooking that I am doing for my two monkeys?), and took pity on me (she actually cleaned up for me.. THANK YOU!! You know who you are..). And then she says to me: "Remember, you can't do EVERYTHING."

She's right.. Problem is, I HAVE to....

I need a Mulligan on today... Or just a 'fast forward' to tomorrow....

Wednesday, May 28, 2008

Nate is Going Home..

Well, about bloody time...Nate is finally going home (and #$!@ blogger won't let me insert any #$!@ links right now, so I'll have to link the old fashioned way.. )

Posted on March 1, 2008
All B.S'ing in my last post aside, THIS is serious stuff.

I Just Can't Stay Away...

So much amazing stuff happening..

Read this from/about John Robison.

And also read this by Dr. Andrew Wakefield in the Austin American Statesman.

Oh, and that jackass teacher that had her young charges 'vote out' another young child with, suspected, Asperger's? She got reassigned (which I sincerely hope is a euphemism for 'she got her ass fired').

Going to be MIA for a Few Days...

I am going to be away from the blog for a few days.. I have a mountain of work commitments to deliver on by Friday. I have some personal stuff to take care of tomorrow and then Salamander has a doctor's appointment on Thursday, so not much time left in the week to get it all done.
Plus, truth be told, I need to step away from 'all things autism' for a bit. I've done a lot of soul searching since Thursday, and, as a result, am battling quite a few (old and new) demons. I am bone tired...

I find myself at a crossroads of sorts.. not an 'autism & biomed' virgin anymore, not yet a veteran. Not an 'angry mom' anymore, but not yet 'at peace with what is'. Salamander is not a young child with autism anymore, but not yet a teenager with autism.

Right now, I have no idea which way to go, what to do next (beyond doing what I'm doing obviously).... I have confidence though that the best path for me and the boyos will illuminate itself.. it always does...(it's just that, well, patience is NOT one of my strengths .. LOL).

On the pinky finger of my left hand I now wear two rings.. one that says 'HOPE', another one that says 'FAITH'. And I'll let those be my guiding principles...

P.S. To all the old and new kindred spirits I found in Chicago, I am so glad to have spent time with you. And Special Thanks to two biomed DADS I had the pleasure of talking with.. you guys helped me gain much needed insight on what YOU had to go through to grow (up?) from father of a child with autism to dad of a child with autism. You helped me understand that YOU and YOU ALONE were the ones that had to decide whether you were going to be 'in' or 'out' (and that it is NOT the mom of the child with autism's job to help the father make that decision, nor is it her fault when the father will not or cannot make that transition..)

Tuesday, May 27, 2008

More AutismOne 2008 Presentations..

I know that 'the slide' I posted on Friday struck a raw nerve...

So here is the presentation from which the slide was pulled that, hopefully, will provide additional context.

Relationship Development Intervention - Raising the Bar for Autism
(Dr. Steven Gutstein, PhD - presented by Carmen Augustin, LCSW)

I have always been a firm believer of "one, two, punch". That is, you treat the underlying medical problems and as the child is getting better, you focus on education and remediation to try to address the missed steps in the child's development. And some really Big Names seem to think so too - as evidenced by the first half of Doreen Granpeesheh's presentation

(Disclaimer: I have no experience whatsoever with ABA as a teaching modality as Salamander never went through any ABA training. I am convinced though that the 'principle' posed in Dr. Granpeesheh's presentation holds, regardless of whether you use ABA, VB, RDI, AIT, OT, Vision Therapy or any other remedial methodology.)

The Child as a Whole: Why Behavioral and Biomedical Interventions are both Critical to Growth and Recovery
(Doreen Granpeesheh, PhD)

OMG - as I am working on this post, an announcement just came in that the slideshow presented at the end of Dr. Amy Yasko's AutismOne 2008 session, showing a bunch of "Dr. Amy's kids" has just been posted. My boys are in it, as are several other kids that are near and dear to my heart. And yes, I cried when it was presented at AutismOne 2008, and I am crying again now. You can find the video here at

Pissed Off...

Not sure what makes me madder.. the story itself, or several of the comments posted by some really insensitive, asinine, clueless jerks who think that what this teacher did is 'justified' and 'showed this disruptive kid who's boss' (I am paraphrasing here). I am totally disgusted.

Hey clueless people (and yes, that includes the teacher who did this) - is your self worth really THAT low that you need to get your kicks from completely destroying a young child that, at this point in his life, has no more control over his behaviors than you have over the fact that you breath in and out??? Read a few books about Asperger's and autism will ya, before you judge and tell us what bad parents we are for 'allowing the kid to terrorize his classmates' (again, I am paraphrasing).

(yes, this story brings back some BAD memories from Salamander's pre-diagnosis days)

AutismOne Presentations..

DVDs for quite a few of the sessions at AutismOne can be found here.

Am I imagining things, or is Dr. Wakefield's presentation NOT listed? I quickly glanced over the list, so it's possible I missed it...

If it's not listed (and I can very well imagine the WHY if it is not listed), then I am even more glad I got my hands on the DVD of his presentation while in Chicago...

Monday, May 26, 2008

Dr. Bock's Presentation on the 4 Childhood A's

Unfortunately, I missed Dr. Bock's presentation on Sunday (I was still, well uhm, asleep). And DVDs of his presentation sold out like hotcakes...

BUT I do have the powerpoint presentation, which I read yesterday on my plane ride back home. It is so worth your time.

So here it is... Please DO let me know if these links are not working properly, I hit a few 'technical difficulties' along the way..

Part I

Part 2

Part 3

Part 4

Part 5

Back to Business As Usual..

Yes, yes.. blog posts on my Saturday and Sunday at AutismOne are in the making...These posts take a more time to pull together than I have right now.

Took the plunge and started Salamander on 1/4 tablet SAMe this morning. So far, so good.
But I think I'll be keeping this at 1/4 tablet once a week for a while, to give his body plenty time to adjust (as I suspect SAMe will turn out to be quite 'big' for him). And then we'll start building up...

Going outside now, it's a GLORIOUS day...

The @$!$@ Roller Coaster..

As posted, Friday was tough.. Saturday was better, but I definitely still was strapped to the emotional roller coaster. On the first day of these types of conferences there tends to be a LOT of anger in the air.. especially as the 'newly diagnosed' parents get their first whiff of what is truly behind the increase in, not just autism but other diseases such as allergies, asthma, chronic fatigue, cancer etc too.

It's a rude awaking for most people (and I've been there) to realize that all those concerns they've had for so long about their kids and what has happened to their kids are REAL, and that no, THEY are not the ones that are crazy - their doctors, relatives, well meaning neighbors ARE. To realize how truly ignorant and uneducated about neurodevelopmental issues most mainstream medical professionals are. To realize that that arrogant patronizing competence projected, that "I'm the expert and you, silly parent, just need to trust me", is all just 'Piss and Wind".

Over the years, I've gotten much more sensitive to unspoken undertones and emotional under currents (comes with the territory of becoming an autism mom, I guess..). And while in the past, I was in the anger pool right there with the newbie parents, I am now in the 'I've been at this a while and I am tired, but I will keep going no matter what' pool. And while at home I am pretty good at doing just that without slowing down, inevitably, at these conferences, a lot of unprocessed emotional stuff bursts free and knocks me on my butt.

Yes, I know I need to process and work through all the emotional stuff from the last 8 or so years (as in addition to Salamandcr's challenges, many other, very taxing things have happened). I need to find the time for a good cry... I need to release all the penned up sadness, anger, frustration, fear - all the negative emotions that can poison a person's soul if you carry them around for too long....

But how and when? Maybe I should have 'let myself go' and fallen apart while at the conference. At least I would have been in a very supportive and understanding environment. But I just couldn't 'let go'. I think I am truly afraid of the magnitude and intensity of my inner emotions (another issue I need to explore more).

And now I am back home. Time to tighten the choke hold on my emotions and feelings again. Time to firmly plant my feet in the here and now, and to keep moving forward.

I learned a lot these past few days, I had a wonderful long conversation with my roommate this morning (who has been living the RDI life with her son for 2.5 years now) - it's where I need to go next - to help Salamander acquire those life skills that he is going to need to grow and develop into a happy, well adjusted adult....

More on Saturday's and Sunday's conference presentations in another post. I HAVE to write more about Dr. Wakefield's presentation - it was (is?) quite the bombshell...

Sunday, May 25, 2008

My Chicago Love Affair

So on my flight to Chicago, I fell head over heals in love. And for 2.5 hours of my life I experienced pure and unadulterated love.

As I settled in to my seat, my eye fell on this beautiful blue eyed blond sitting across the isle from me. Our eyes met. We instantly connected down the core of our souls. The blue eyed blond broke out in the biggest smile you have ever seen - his whole body smiled.

And for the duration of our flight, we laughed together, told each other jokes, he looked where I looked, I looked where he pointed. We found out that we had many interests in common, that we enjoyed a lot of the same things.

And I watched the blue eyed blond sleep.

And at the end of our flight, the blue eyed blond and I looked deep into each other's eyes one more time, shared one more 'body smile'. And then we parted ways.

The blue eyed blond is an 18 month old little boy who was traveling with his mom back to his home in a suburb of Chicago. He was the most adorable, most connected, most engaging little boy I've met in a long time. He was doing all the stuff that little kids this age are supposed to be doing. I will never forget him - he will forever have a little piece of my heart.

And if there is any justice left in this world, he will NOT become a '1 in 90'....

Back Home...

Boyos seem to have gotten through my absence OK (according to one party.. I'll reserve judgement until tomorrow after I've had a chance to interact with them and after I've had a chance to talk with a few other parties that were involved in their care while I was gone).

My house seems to have gotten through my absence less OK.. LOL

I am emotionally exhausted... While I am glad I went, and while I will move heaven and earth to go again next year, these conferences DO do a number on me emotionally.. I'll be blogging about why I think that is soon.

I will be writing a few more posts about my Saturday and Sunday at Autism One. These will be going 'up' in the next few days.

And if any of my cyber friends that I finally met in person this weekend are reading this. I am SO HAPPY that I got to connect in person with you all. You are an amazing bunch and I am honored to have you in my life. Here's to many more in person interactions.

It's Incredibly Late (or Early..)

and I am incredibly wiped, so I won't be staying on long. I think I am going to take part of tomorrow morning 'off' from more sessions, so I can catch up on the blog and post my impressions for Saturday.

Emotionally I was in a bit of a better space, but things still 'hit' me every once and a while.. I think what is happening is that these conferences tend to throw me back to the 'what happened to Salamander'. And it is so God Dang painful to go back to that, to go back to how bad things were for such a long time and how a lot of the really bad stuff could have been, should have been avoided....

See, I don't really allow myself to 'go back in time' too much.. doing that serves no purpose, what is done is done, I can't change the past, all I can do is stay in the here and now, and use today, right now, this minute to do things I can do now.. and to then go forward from there..
I am not doing a very good job articulating this right now, I am beat.. I will either edit this post tomorrow, or add to better explain myself.

There were several awesome sessions today. Dr. Wakefield's story (The Lesser Truth) just absolutely blew me away (think Medical Suspense Thriller), and then of course, my personal highlight of this conference was Dr. Amy Yasko's marathon session this afternoon.

Now imagine my delight when in one of her presentation's Dr. Amy introduced The Invitation as 'one of her favorite poems'...
Now WHAT are the chances of that??? So I am pulling a post of mine about The Invitation to the top......

More coherent thoughts (Bwahahahaha!! Well, a girl can dream, can she not) later...



I think I finally stumbled upon the PERFECT articulation of my philosophy to life and my relationships with other human beings. This poem is ME, in every fiber of my being.

Excerpts from The Invitation by Oriah Mountain Dreamer that especially resonate...

I want to know if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations of being human.
It doesn’t interest me if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.


It doesn’t interest me
to know where you live or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.


I want to know if you can be alone
with yourself
and if you truly like the company you keep
in the empty moments.


Friday, May 23, 2008

Tough Day.. Tough Day...

Although I've been on this journey for quite a while now, these conferences still get to me. I can't rationally explain WHAT happens.. Most of the time I keep such a very tight choke hold on my emotions and I don't allow myself to get too stuck in negative, 'woe is me' type of thinking, or God forbid, have a "I'm falling apart and bawling my eyes out for more than 1 minute" session. As really, if/when I fall apart, who's going to step up and fill my shoes until I gain my composure (don't answer that.. rhetorical question..)?

I did OK this morning. Dr. Herbert's presentation was great, as always, and Dr. Walker's was very interesting too [to my disappointment he decided to NOT discuss his association with the Macaque -vaccine schedule study.. apparently results have just been submitted for publication, but not yet accepted.. but it was really nice to hear him talk about his transformation from biogeneticist focussed on single gene disease models to an 'ASD kids are physically ill" investigative biomarker researcher.

I thorougly enjoyed Barbara Fischkin's presentation - while the 'outcome' for her son is far from what you would hope for (he continues to be severely affected), she and her husband have been able to create a space for Dan in their community (he has two jobs now), and I truly think that, in his own unique way and with lots of help from a caring community, he will be 'OK'.

Jenny was.. well.. Jenny is Jenny.. 'nuf said. She made me laugh, she made me tear up a little, she made me swear with her, she made me stand up and cheer. While I certainly don't agree with everything she has to say (I think she oversimplifies a tad too much), there is no denying the impact she's had on getting biomedical treatments for autism into mainstream media.

My afternoon had a very strong remedial education/remedial communication therapies slant to it.. and it was during the RDI session that 'it' hit me.. and 'it' hit me hard. While there is no denying that Salamander has come far, we still have so far to go in the relationship development/communication to facilitate and maintain relationships/life skills department. And I realize that I have made/am making a mistake by having become Salamander's 'prosthetic frontal lobe'. I need to snap out of doing the 'filtering, processing, sorting, sequencing, etc.' for him. He MUST learn to do this himself if he is to become a self directed, confident, and competent adult. So now what do I need to do to get him there? RDI may be part of the answer...

In the same RDI session, there was talk about how bogus the terms 'low functioning' and 'high functioning' truly are, as it says absolutely nothing about the magnitude of the impact of the core deficits of autism on the ability of the affected person to develop and sustain meaningful and fullfilling relationships (and those deficits are there regardless of where you've landed on the spectrum). The following slide send me into quite a funk - this is NOT what I want for Salamander...

I am still trying to pull myself back together... Hopefully some sleep will help....

Added on May 27, 2008:

The above posted slide was picked up by a fellow blogger. She too was hit hard by it. By the time she picked it up though, I had had some time to ponder and process, so I felt further context to the slide was necessary. You can find the ensuing exchange here.

Plan For Today...

Real quick.. running late.. got up at my usual time but I got chatting with my room mate and totally forgot about the time...

My conference plan for today:

8 am Dr. Herbert
9 am Dr. Walker (of Macaque Monkey association). Abstract below

This talk will focus on two studies that I am currently involved in. In the first study, infant rhesus macaques were given the human-equivalent vaccine dosing regimen (1994-99) from birth to 5 years of age. Animals were evaluated, on an on-going basis, for: (a) measures of behavior and cognition (e.g. meeting typical infant behavioral and cognitive milestones), (b) molecular and histological changes within the GI tract (by examining tissue biopsies), (c) brain imaging and, (d) immunologic changes. I will discuss some of the molecular findings in the bowel. In the second study, an on-going collaboration with clinical partners, we have evaluated bowel biopsy tissue from children with ASD and chronic bowel symptoms. Preliminary findings and future directions for these studies will be discussed.

10 am Barbara Fischkin
11.15 am Jenny McCarthy
1,45 pm Dr. Marian Blank
3 pm Dr. Mary Megson
5 pm Christina Adams

And of course in between I'll be trying to find all my Yasko and internet friends.

I got to run now, otherwise I won't make it to Dr. Herbert's presentation on time!!!

(yes, I know, I owe you all the story of my love affair...)

Thursday, May 22, 2008

THIS Just Friggin' Hilarious...

Real quick, as I HAVE to finish this work assignment, but I just had to share this absolutely hilarous contradiction...

The room service menu is AWESOME. Organic meats, vegetables, eggs, foods high in antioxidants, phytonutrients, the right fats, the right fish (wild catch only, if you don't mind), etc., etc., and so on and so on...

And what lightbulbs do they have in every single light fixture????

Yup, the 'mercury bulbs'!!! (ya'll know which ones I'm talkin' about).

Am in Chicago...

and setting up shop.... Have some work stuff to finish and then I'll be back..

Teaser... I met a beautiful blond man on the plane to Chicago


I fell head of heels in love....

Off to Chicago...

Well, by the time this post goes up I should have left for the airport to fly to Chicago. I'm excited about being 'away from it all for a bit', but I'll miss my two monkeys terribly (yup, call schedule all set up.. and they know they can call me anytime..). Am very much looking forward to meeting several of my blogging/internet friends in person (but not looking forward to the mess I am guaranteed to come back to when I get back on Sunday nite.. ah well..).

I am bringing my computer with me (paying work commitments that I need to deliver on ... see, this thing about being your 'own boss' is relative.. ), and I know that I'll have access to the web from the hotel. I'll blog as time allows....

Peace out....

Wednesday, May 21, 2008

I Can NEVER Die...

I am sure all of you can relate.. As I am feverishly cooking, writing down schedules, how to and what works best notes, preparing supplements, writing down instructions on what supplements to give when and how, etc., etc., etc (my notebook is getting quite thick.. LOL), I once again realize how much knowledge resides IN MY HEAD and how much I do in any given day....

And that to transfer that knowledge, unless the person you are transferring to knows as much as you do AND cares as much as you do, is almost impossible...

One thing I HAVE to make a priority after I come back from this trip is document EVERYTHING that pertains to the boys. Things happen...

So Sad...

Now this message just broke my heart... I can't find the words to express to Ashley's family how sorry I am for their loss...

Thank God Salamander swims like a fish (but still, he DOES need close supervision, as he does not always understand what is safe and what isn't). Potatey has well developed self preservation instincts, but you bet I'll be teaching him how to swim this summer...

Tuesday, May 20, 2008

These two guys are incredible (and darn it, where is that cloning protocol when you really, really need it...)

More AutismOne 2008 Stuff...

Less than 48 hours before I am supposed to be leaving my house/kids ... And I am SO not ready (yet)...

[those of you that know me well know that I always kinda 'freak out' when I am about 48 hours away from a major event/deviation from the typical routine. Give me another 12 hours, and all the jitters will have passed. I'll be cool, calm and collected, things will run like clockwork and I'll get all that needs doing done, with time to spare..]

For those of you that can't make it to Autism One, arrangements have been made to webcast certain events...

Autism One Webcast
Jenny McCarthy’s Keynote Webcast Live!
Dr. Amy Yasko, Dr. Martha Herbert
and 16 other ground-breaking biomedical presentations

Join Autism One live beginning Wednesday, May 21 for The Art of Cooking Special Diets. On Thursday, May 22 the webcast continues live with IEP Special Education Law Day.

The main conference live webcast begins Friday, May 23 and extends through Sunday, May 25, bringing you the leading researchers who are helping to recover our children. Watch and learn live as the latest findings are presented by the scientists who are redefining autism as a whole-body, treatable condition.

Don’t miss Jenny’s passionate keynote or Dr. Amy’s research in helping our children recover. You are your child’s most effective advocate. Learn how.

For more information and to register visit here

(please note all times are Central.)
8:00-9:00 Martha Herbert, MD, PhD
9:00-10:00 Steve Walker, PhD
10:15-11:15 Derrick MacFabe, MD
1:45-2:45 Mady Hornig, MD
3:00-4:00 Boyd Haley, PhD
4:00-5:00 Woody McGinnis, MD
5:00-6:00 William Walsh, PhD

7:00-8:00 Jon Poling, MD, PhD
8:00-9:00 Andrew Wakefield, MD
9:00-10:00 Mark Noble, PhD
10:15-11:15 Jill James, PhD
11:15-12:15 Jeff Bradstreet, MD & Jacquie Mancini
1:30-2:30 Amy Yasko, PhD
2:45-3:45 Amy Yasko, PhD
4:00-5:00 Amy Yasko, PhD
5:00-6:00 Amy Yasko, PhD

8:00-9:00 Phillip DeMio, MD & Angela Shoemaker
9:00-10:00 Kenneth Bock, MD
10:30-11:30 Arthur Krigsman, MD
11:30-12:30 James Neubrander, MD
12:30-1:30 James Neubrander, MD

Sunday, May 18, 2008

Growing Up Neurologically Dysregulated..

The article I posted earlier today about the 10 year old boy with Bipolar Disorder has stayed with me, no, has HAUNTED me all day.....

So many memories that bubbled back up.. stuff I thought I had dealt with and 'put away'...

To put things in perspective, Salamander's moods are relatively stable right now... And, since starting Dr. Amy's protocol in August of 2006, I've seen very nice and steady improvements in Salamander's neurotransmitter balance (his dopamine and norepinephrine breakdown products have always been completely out of wack.. not that they are perfect now, but they ARE getting better), and in his ability to process and regulate his moods and emotional upheavals. Also, his lows and highs have evened out.. the lows are happening further apart and they are not as intense as they used to be..

I AM, however, always on eggshells, always waiting for that other shoe to drop, always ready to move to DEFCON 1. A good day today does not guarantee a good day tomorrow. Heck, a good morning does not guarantee a good afternoon...It is exhausting to always have to be ready to go to crisis mode. And it is downright torture to see Salamander in one of his extreme highs or extreme lows. I know he's in pain, I do what I can to help him, but when things go bad, it just isn't enough. It's never enough...

There are no easy answers here, no easy solutions. The world is a tough place for a child that's different, especially for a kiddo that is as smart as Salamander, who's aware enough that he realizes that he is different, but who is so neurologically sensitive and fragile. TG, he has people in his life, beside me, who understand that when things go bad, it's not because he chooses to have things go bad. When the neurotransmitters go cooky, there is not much he can do.. he is literally just going along for the ride. And when this happens, he needs patience, calmness, understanding and a lot of TLC. What he does NOT need is being yelled at, being made fun of, being belittled, being ignored, being told to 'just knock it off'...

Tonite things were a bit tough.. this was definitely an evening of extremes. Giddy, crazy happiness/silliness one moment, deep down in the dumps sadness the next (and no, it's not a yeast flare.. his yeast has been under control for quite a while now). Something shifted around 5 pm today.. part of it may have been low blood sugar, part of it may have been the realization that he has another math MCAS session tomorrow, part of it may have been the realization that I am going to be away from him for a few days by the end of the week...

You know how people say that it's good for the kids when their parent(s) go(es) away for a little bit? While it may be good for me to be away from it all for a few days (my last time away from the boys was an overnite trip last year September, and prior to that a week in late Jan/early Feb 2007, and many, many years prior to THAT), it is not necessarily so good for Salamander... I know he'll try his very best to get through those days that I am not physically there.. He has my cell phone number and he knows he can call me anytime, anywhere.

I can't help but worry though, I can't help but worry...


Please read this story about a 10 year old boy with bipolar disorder.

I am sitting here with tears rolling down my face, barely able to breath, with goosebumps all over my body - I recognize soo much of what is written here in our own story (it's no secret that, if not for the fact that Salamander at time of diagnosis met all the criteria for an autism spectrum disorder and still does, he would have been diagnosed with juvenile onset Bipolar Disorder by now.. )

I am posting the first page of the article.. follow the link to read the rest..

Disclaimer - me posting this does not mean I agree or disagree with any medical or treatment options presented in this article, or that I agree or disagree with bipolar disorder being presented as a mental illness (I think it's waaaay more complicated than that). I am posting this, because as a mom of a child with intense and very unpredictable mood swings, I can so relate...

Welcome to Max’s World
Bipolar disorder is a mystery and a subject of medical debate. But for the Blakes, it's just reality.

By Mary Carmichael NEWSWEEK
May 26, 2008 Issue

Max Blake was 7 the first time he tried to kill himself. He wrote a four-page will bequeathing his toys to his friends and jumped out his ground-floor bedroom window, falling six feet into his backyard, bruised but in one piece. Children don't really know what death is, as the last page of Max's will made clear: "If I'm still alive when I have grandchildren," it began. But they know what unhappiness is and what it means to suffer.

On a recent Monday afternoon, Max, now 10, was supposed to come home on the schoolbus, but a counselor summoned his mother at 2:15. When Amy Blake arrived at school, her son gave her the note that had prompted the call. "Dear Mommy & Daddy," it read, "I am really feeling sad and depressed and lousy about myself. I love you but I still feel like I want to kill myself. I am really sad but I just want help to feel happy again. The reason I feel so bad is because I can't sleep at night. And dad yells at me to just sleep at night. But, I can't control it. It is not me that does control it. I don't know what controls it, but it is not me. I really really need some help, love Max!!!!! I Love you Mommy I Love you Daddy."

This is the story of a family: a mother, a father and a son. It is, in many ways, a horror story. Terrible things happen. People scream and cry and hurt each other; they say and do things that they later wish they hadn't. The source of their pain is bipolar disorder, a mental illness that results in recurring bouts of mania and depression. It is an elusive disease that no parent fully understands, that some doctors do not believe exists in children, that almost everyone stigmatizes. But this is also a love story. Good things happen. A couple sticks together, a child tries to do better, teachers and doctors and friends help out. Max Blake and his parents may not have much in common with other families. They are a family nonetheless. That is what has mattered most to Amy and Richie Blake since Oct. 31, 1997, the day their son took his first ragged breath.

Max came into the world with a hole in his heart. Struggling to be born, he lost oxygen, and doctors performed an emergency C-section. Recovering from the operation, Amy feared her infant son would need surgery, too, but the doctors said the hole would close with time. Four days later the Blakes wrapped their baby in a blanket and brought him home to their little house in Peabody, Mass. Richie, a former Marine, was working as a county corrections officer. Amy was a promising divorce lawyer at a firm in nearby Boston. As children, both Richie and Amy had watched their parents split up, but they had found a comfortable routine in each other: he played straight man to her comic. Marriage suited them. Amy hung a large, sunny wedding portrait in the living room. Starting a family would not be easy: there were no grandparents living nearby, and Amy could take only three months of maternity leave. Still, she thought, this was a stable home, one where Max would be safe and happy.

The mothers of bipolar kids often say their babies are born screaming. These are children who live at the extremes: so giddy they can't speak in sentences, so low they refuse to speak at all. Unlike bipolar adults, they flit rapidly between emotions; sometimes they seem to feel everything at once. At least 800,000 children in the United States have been diagnosed as bipolar, no doubt some of them wrongly. The disease is hard to pin down. The bipolar brain is miswired, but no one knows why it develops that way. There are many drugs, but it's unclear how they work. Often, they don't work at all, and they may interfere with normal brain growth. There are no studies on their long-term effects in children. Yet untreated bipolar disorder can be disastrous; 10 percent of sufferers commit suicide. Parents must choose between two wrenching options: treat their children and risk a bad outcome, or don't treat and risk a worse one. No matter what they do, they are in for uncertainty and pain.

Amy knew none of this when Max was born. She did know new motherhood was tough. Max never slept through the night, and neither did she. He cried for hours at a time. He banged his head against his crib and screamed until his face burned red. Nursing, cuddling, pacifiers—none of them helped. At 2 a.m., at 3, at 4 and 5 and 6, Amy cradled her son, trying to believe this was typical infant irritability, the kind her friends with kids had warned her about. It must be colic or gas, she thought, as Max howled another day into being. Exhausted, mystified, she made jokes—he was born on Halloween, she ate too many spicy chicken wings before delivery—trying to explain how a baby too young to hold up his head could raise such hell.

After a year, the jokes gave way to worry. Max was reaching and surpassing his milestones, walking by 10 months and talking in sentences by age 1, but he wasn't like the babies in parenting books. Richie carried his son to the backyard and tried to put him down, but Max shrank back in his father's arms; he hated the feel of the grass beneath his small bare feet. Amy gave Max a bath and turned on the exhaust fan; he put his hands over his ears and screamed. At 13 months, he lined up dozens of Hot Wheels in the same direction, and when Amy nudged one out of order, he shrieked "like you'd just cut his arm off." At day care, he terrorized his teachers and playmates. He wasn't the biggest kid in the class, but he attacked without provocation or warning, biting hard enough to leave teeth marks. Every day, he hit and kicked and spat. Worries became guilt. Amy had been overweight and dehydrated in pregnancy. Was Max so explosive because she had done something wrong?

Follow this link to

Saturday, May 17, 2008

Five Days..

'till I leave for Chicago to attend the AutismOne 2008 conference.

And I am loosing my mind, as I have so much planning and preparing left to do....

I am really, really nervous about leaving the monkeys for 4 days.. No, no, they won't be left ALONE obviously. It's just that, well, whenever the Head Zookeeper needs to, temporarily, transfer Head Zookeeping responsibilities, not-so-good things tend to happen....

Friday, May 16, 2008

THIS Coming from an RN...

Nothing new for 'those of us in the fox hole', but maybe what Ms. Jamison writes will carry more weight because she's an RN?

Is the proliferation of vaccinations really in your child's best interest?

By Barbara Jamison
For the News-Sentinel

All parents should review the list of routinely recommended vaccinations for babies, toddlers and young children prior to giving consent. Read the available information about each vaccine. Go online or to the public library. Ask a friend, co-worker, nurse or doctor for in-depth information regarding each vaccine. Ask questions such as: How dangerous is the illness? Is my child likely to contract the illness? What are the risks of the vaccine?

Vaccination against disease has been an ongoing process since the smallpox inoculations in the late 1700s. At that time, the etiology of common infectious diseases was unknown. Today in America, most people have an excellent quality of food, water and proper sanitation. We understand how disease is spread and have access to treatment.

It is time to take a new look at the need for specific vaccinations. Vaccination is designed to benefit the public health. It is a one-size-fits-all approach. Thus, the rural Midwestern baby receives the same treatment as the crowded inner-city baby. Surely, the needs of these babies are not the same.

Hepatitis B vaccine is recommended for men who have sex with men, IV drug users and babies prior to hospital discharge after birth. This is because the government wishes to avoid future cases of Hepatitis B. Thus, all babies, regardless of the likelihood of exposure, are given this injection. Does that seem appropriate to you? This same theory is the reason for the recent push to vaccinate all 11- to 12-year-old females against HPV (human papilloma virus), which is spread by sexual contact. Another example: Hepatitis A is a contagious liver disease spread through contaminated food and water. Children are not among the high-risk group. Does your infant really need this shot?

A prudent approach would be to target a specific vaccine to specific patient populations. The minimal recommended vaccination schedule includes 60 doses — some different strains of the same illness — for 14 diseases by age 18 months. It is common for the shots to be bunched in one day. If the baby is “off” schedule, your 15-month-old may receive all the 12-18 monthly doses on the same office or clinic visit. Surely, this must have some adverse effect on the immature immune system. [emphasis added by moi]

Some scientists correlate the proliferation of autoimmune disorders in our society to multiple vaccinations at that very early age — illnesses such as asthma, diabetes, lupus, inflammatory bowel, rheumatoid arthritis, allergies and certain cancers. Some medical researchers and parents believe components of vaccine products cause or did cause autism and other neurological disorders. All vaccines carry risk and can be fatal. Indeed, a reaction is the expected outcome necessary to provide immunity.

Scientists are continually making new vaccines and more trivalent-polyvalent forms. These are combinations of vaccines in one dose. The more combinations, the less likely science will be able to determine which vaccine causes a possible severe reaction in your child. And the likelihood of severe reaction increases. Even today, we do not know the true extent of problems post injection. The FDA estimates that parents or physicians do not report 90 percent of adverse vaccine reactions. Reactions such as seizures, high-pitched screaming, fever, severe diarrhea, vomiting and shallow breathing are not reported. SIDS will not be reported as a vaccine reaction unless it happens within 48 hours of the shot. Yet many vaccine responses occur within one to four weeks. [emphasis added by moi]

The medical establishment equates refusal to vaccinate or choosing partial vaccination as tantamount to child neglect. These parents are often treated with contempt. Perhaps these parents are better parents. Maybe it is best to allow viral contact between children. It is impossible to prevent the spread of most viruses anyway. This would encourage young immune systems to respond normally.

This letter is meant to increase parental awareness about childhood vaccination and to encourage a more individual approach. Otherwise, the price we pay is the loss of natural immunity to many diseases.

Barbara Jamison is a registered nurse.


Other interesting stuff:


A blurb - The first research project to examine effects of the total vaccine load received by children in the 1990s has found autism-like signs and symptoms in infant monkeys vaccinated the same way. The study's principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic "certain neurological abnormalities of autism."
The findings are being reported Friday and Saturday at a major international autism conference in London.

Thursday, May 15, 2008

Cute as a Lady Bug...

As promised..

First a pic, then a few videos. Pay close attention to that beautiful blond Lady Bug front and center (in many more ways than one... LOL).

I love you, little bug(ger).

A Litte High, A Little Low...

Potatey's school show was AWESOME! He had a blast, and I got some really cute videos of the 'performances' (I need to edit a bit and then will upload a selection to the blog). And for once it was nice to just sit back and enjoy the fact that MY kid wasn't the 'sensory overload one'.

Well, on stage that is - as MY sensory overload kid was in the audience, and put up a beaut of a performance too.. SIGH...

Potatey had invited Salamander to come to his show. Salamander first resisted (crowds and loud, potentially out of tune, singing are just not his 'cup of tea'), but changed his mind yesterday afternoon, and expressed that he wanted to go after all. Today, Salamander came off the school bus, super excited and all geared up to go. He bounced into Potatey's school, sat down, listened to the first performance, and ....fell apart....I won't go into the details, let's just summarize that saying he behaved like a bratty teenager with a bad case of PMS is putting it mildly.

After the performance was over and after Salamander had had some time to 'cool off', we talked about what happened, why Salamander's behaviors were inappropriate, how his behaviors had really hurt Potatey feelings, and what would have been better ways for Salamander to express the fact that the singing was too loud, that the lights were too bright, that the room was too crowded and smelly (aka sensory overload).

I'll be honest, my feelings were hurt too, and I did get upset and annoyed with Salamander. While intellectually I understand the 'why' behind the behaviors, what Salamander did and said took 'something' away from my enjoyment of Potatey's performance...

Salamander and I will do another 'post mortem' tonite at bed time, when we've both had some time to think about and process what happened. Regulation of intense emotions IS a struggle for him, I know that, and on the upside, he HAS made tremendous progress in that area. And another positive is that he DOES realize that his behaviors upset Potatey and me, and he feels bad about it.

We'll keep working at it..Salamander tries hard, he really does...

ADDED at 8.15 pm:
"Post mortem" completed. Salamander was able to explain what happened. Apparently there had been a few upsetting situations at school. Usually, as he gets off the school bus, he will have some 'down time' which allows him to think about the events of the day, and to, if needed, ask questions about the why and how and what it all means, which in turn helps him put things in perspective. Today he did NOT have that opportunity, as he was obviously being rushed straight off the bus to Potatey's school. As he said to me: "Mom, I had a bad day at school and the situations were just playing over and over and over in my head and I got really upset again. And then when I got to [Potatey's] school it was all too much."

Note to self: Salamander MUST have time to process and talk about his day BEFORE moving on to the next activity. Even if this means that we get to the next activity late.

Some Interesting Happenings Here

Sorry, crazy busy today. Just quickly coming up for air to post a few 'teasers':

Potatey has been sleeping really good since Saturday night. Yes, we still have an occasional night terror, but I can manage one or two per night. It was the constant stream 10 - 15 minutes apart between the hours of 1 am and 4 am that were really messing us up. Melatonin did absolutely nothing. I DID start Valerian Root on Saturday night, and I do think THAT is what is putting the damper on the night time shenanigans. I have my theories as to WHY the Valerian Root is having such a dramatic effect, but no time right now to get into the details.

Salamander's allergies are somewhat under control (for now). They are by no means gone, but we're getting to the 'it's manageable' point, which will hopefully buy Salamander a couple of better days and me some additional time to research our options (prescription drugs or other natural agents). He's been on OTC Zyrtec since Monday afternoon and on Wednesday night I added a Horehound containing herbal supplement. We've also been consistently using Xylitol nasal spray.

I am also seeing some really interesting changes in Salamander's use of language and his ability to 'get' and use nonverbal communication. His language is, once again, becoming more fluid, and he now almost seamlessly switches back and forth between different forms of language (formal vs. informal, when talking with me versus teachers, when talking with peers vs. his younger brother, etc). He now 'gets' when to use what language form, without me having to coach or prompt. I am seeing some positive changes in processing time, as well as increased ability to 'make conversation' - his comments back to his younger brother when said brother shares about his day and life in general, are much more on topic and in line with the conversation (including 'small talk comments'). Overall, I've noticed over the past several days that his language is sounding more and more 'natural'.

He's also pleasantly surprised me with an increase in his ability to initiate and then stay 'on task'. I have actually been able to give him a task and then walk away, and then he'll get back to me when the task is complete (as opposed to me having to check in every so often and reminding him what he is supposed to be doing). He is also initiating tasks on his own, without me prompting. It's weird in a way.. over the years I've gotten so used to being his 'prosthetic frontal lobe'. His needs for me to be this for him have been slowly decreasing since last summer, but I am seeing another jump.

I have my theories on these developments as well, but those too will have to hold until I've got more time.

OK, back to work. Potatey has a class performance this afternoon, and I have a ton of work sh#t to get done.

Wednesday, May 14, 2008

Fundraiser for The Gottschall Autism Center..

Bumping this one 'to the top'...
Another event I had really wanted to go to, but alas, duty calls.. I am over my eyeballs in work that MUST get done, and I won't have time to 'just play' tonite..

For those of you that are 'local' to where I am, won't you ''Have a Few for The Cause?"

(Heck, even if you're NOT local.. you can still buy a ticket.. consider it a donation to a very worthwhile venture..)


Tuesday, May 13, 2008


[I tried to embed the actual video clip, but ran into technical difficulties. So instead I am going to link to my friend Kim's blog, where the clip is running just fine.. Oh, and the video is up at Wade Rankin's blog as well]

Call me cynical.. while I am absolutely THRILLED to hear all of this come out of the mouth of a public health 'official', I am a bit leary of this particular one....

See, I've heard this particular song before.. just go back in time about 7 or 8 years or so and replace "vaccines: with "contaminated", "autism" with "blood supply", and "we need scientific studies" with "the ARC's blood collection program needs significant reform". And despite the "passion, dedication and putting oneself out there" displayed then, things went absolutely NOWHERE.

I just hope that other public health officials will adopt the very reasonable, well articulated message spoken yesterday by Dr. Healy. Because otherwise, once again, I fear things will go nowhere...

You'll have to forgive this cynical biotch. I'm NOT ready to jump on the "Dr. Healy will finally get our message heard" bandwagon just yet..

Had to drive to Newton this morning.. It's where one of the boyos doctors has her office.

I needed to drive in that general direction anyway to take care of some banking business, so I figured I may as well keep going, get some more test kits and make office visit appointments for the monkeys while I was at it.

The doc's office sits smack dab in a series of beautiful neighborhoods, filled with gorgeous old homes on nicely landscaped properties. I make this particular drive probably once a month (and I always try to combine it with trips to the bank, or a trip to a WFM that's not far from the doc's office - with the gas prices the way they are now, I cannot afford a 50 mile round trip drive 'just' to pick up test kits) and had noticed over the past few months that quite a properties had gone up for sale.

Every single one of these properties are beautiful, well maintained, old Victorian style houses. All of them are on good sized properties, with fully landscaped grounds, have nice wide driveways and 2 or 3 car garages. Now typically properties like these get turned around very very fast here. We're talking weeks, frequently only days...

Not lately.. I noticed that the same properties that were up a few months ago, were still up. And not only that, a LOT more properties had gone up. Some streets had 3 or 4 houses with 'For Sale' signs in their yards. And several of the properties that have been up for a while are now sitting there empty.. and may be sitting empty for a long time to come (as the housing market here has completely and utterly tanked).

All those beautiful houses, just sitting there empty..

Fooking depressing...

(but no, we are not experiencing an economic recession here according to the 'man in charge'.. not at all...)

Monday, May 12, 2008

Started walking this morning.. just put one foot in front of the other....

First to the post office, to mail a few letters and to buy some stamps...

Next to the local pharmacy to pick up Zyrtec for Salamander (I HAVE to try.. will let you all know how it goes).

Then I just kept on walking.. and walking.. and walking.. and walking..

And if felt so good...

I walked for well over an hour (have NO IDEA how many miles I covered..)... just let my mind wander anywhere it wanted to go... while my feet just kept on going....

I'll surely be doing this again tomorrow...

Sunday, May 11, 2008

Cool Happenin's....

Where to start, oh, where to start.. This has actually been a pretty cool weekend.

Reasons why, in no particular order:
  • Potatey slept through the entire night last night. Yes. He. Slept. Through. The. Entire. Night. He woke up once at 9.30 pm to go potty, then conked back out and not a peep out of him until sometime after 6.30 am this morning. No waking up 3 or 4 times between 1 am and 4 am, no nightmares, no night terrors. Nothing. Nada. Niente (not telling yet what this may be due to.. don't want to jinx myself.. but no, it wasn't the melatonin).
  • Having my two little men make me breakfast this morning. Yes. They. Made. ME. Breakfast. Potatey made me fresh grapes, poured me orange juice and got me cereal and yogurt. He knew exactly where to go for these items and what to do. Salamander made me scrambled eggs.. fancy scrambled eggs that is.. with slices of ham and slivers of chicken. And he only needed minimal help/supervision at the stove.
    I AM SO IMPRESSED WITH BOTH OF THEM (of course they've seen me cook a million (trillion?) times.. and apparently things DO register.. And now I have myself two helper cooks!! HAHAHA).
  • Getting a wonderfully happy/excited email from a dear friend who has her two boys on the same protocol as my two are following. She started her older one (who is/was affected by autism) about 2 -3 months before I started with Salamander. Her guy is doing so well.. she's moving on the end phase of the program.. and I am so incredible happy for her (well done, K. G., and I am so happy for B. I so hope that by the time B is Salamander's age, this whole venture can be 'just memories' for ya).
  • Getting an enormous stack of Mother's Day's cards and drawings handmade by my two boys. So much love and caring was put in each of them. And the cards are so beautiful (I put up a selection throughout of this post).
  • Getting a wonderful Mother's Day eCard from a very dear friend (yes, I'm talking about you C. G) - the sentiments expressed on the card made me laugh and cry at the same time. Right back at ya, gal, right back at ya.
  • Having payments for my April invoices starting to come in. I paid my mortgage, my gas bill, my electricity bill, my water bill, my phone bills, my cable/internet bill, several loooooong overdue medical bills, and my business AMEX card. I will now be able to pay for several of Salamander's summer camps and I will have money for an aide for him for one of those camps. And I will not have to worry about grocery money for this month (and as May will be a good month as well, I may not have to worry about money again until end of June).
  • Having Salamander come up with a really cool idea for a fundraiser for a subject that is near and dear to both our hearts; the Gottschall Autism Center. More on that will go up as things become more solid. Let's just say that Salamander's idea is really forcing ME out of my comfort zone - and that is only fair, as I make HIM get out of HIS all the time.
  • Having a chance to actually call my mom, wish her a Happy Mother's Day, and just chat for a while. She even got Happy Mother's Day wishes and several "I love you's" from her grandsons.
  • Watching both my monkeys run amok around the house for most of today.. It was a really nice day out here.. They were both in a decent space.. so they were actually able to play together without murder and hayhem (which allowed ME to have a, reasonably, uninterrupted conversation with my mom, AND plant some flowers..).
  • Having both boys in bed and asleep by 8.30 pm.. pooped from all the running around.. allowing ME to write this blog post.. while listening to Bruce Springsteen's "Girls in Their Summer Clothes'...

Right now, this minute, life is good. And tomorrow brings what tomorrow brings...

(do keep Salamander in your thoughts.. he continues to struggle with seasonal allergies [sinus infection is gone, gone, gone.. TG] and Math MCAS is starting tomorrow..)

NOT One of My Smarter Moments...


So to help Salamander with his seasonal allergies I had put him on a homeopathic supplement that contains calcarea carbonica (amongst many other things.. the calcarea is actually one of the 'lesser' constituents)...

So I get a UTEE back for Salamander that shows sky high calcium...

So I scrutinize Salamander's diet for any source of calcium (he does NOT process direct calcium supplementation in any shape, sort or form.... in fact direct calcium supplementation is an excitotoxin for him.. which is fancy speak for 'calcium supplementation makes him looney').

So I can't find anything, as I haven't really changed his diet in years.

So I finally really, really, really 'listened' to what 'calcarea carbonica' sounds like.. (calcarea sounds somewhat like calcium, wouldn't you agree?)

So I run a web search on calcarea carbonica... turns out calcarea is a type of coral whose skeleton is made of ..drum roll.. CALCIUM CARBONATE!!!


Needless to say, this 'anti-allergy' supplement has now been removed from his supplement regimen....

As I said, NOT one of my smarter moments..

(and now I got to figure out what I can try next for Salamander's environmental allergies...Claritin and Benedryl are just not cutting it this year)

Cute Stuff .....

'Got lucky' during soccer...[oh, the visual images THAT will generate..]

Watch that No 10!!!

Now watch 'da dude' in action...

And as we're on the topic of Cute Stuff... THIS I WANT..

(my current one is sooo past his prime...)

Saturday, May 10, 2008

Monkeys had a pretty good day.. we had fun, got a lot done... and now I'm tired and going off to bed

And Just for Shits and Giggles...

Heeere's Bismuth!!!!!!

Uncle Lead

In the overall scheme of things, Salamander's current lead excretion is not that spectacular. However, if you take a closer look at the right end tail of the graph, you can see that the excretion levels are on the rise again..
I am pretty sure that Salamander has cleared most of the 'easily accessible lead' by now (oh yeah, he is definitely lead toxic). And now we need to get to the harder to reach stuff - the stuff that's been deposited in his bones, teeth, gut lining, muscles, and last - but not least- his brain tissues.

Auntie Mercury

Salamander's mercury had tapered way down.. but now we have "Mercury Rising" again..

Cousin Nickel...

A Few Metals Diagrams

To follow are diagrams showing Salamander's output over time for a few 'choice' metals - last bar on the right reflects most recent output

Here's Auntie Cadmium:

Sensory Processing Nightmare....

Tight soccer socks, shin guards and 'pinchy' cleats... Need I say more?

Off to soccer.. Will try to get some good pics and maybe a video today..

Friday, May 09, 2008

Happy Mother's Day

Well, as I have had this particular poem show up 4 times already in my inbox (and it's not even Mother's Day yet.. ), I'll consider it a sign to 'get it out there'.

A very Blessed Mother's Day to all those awesome gals out there that I've gotten to know in my 4+ years on the crazy, special needs, roller coaster: I [heart] you!!!!

And without further ado, here goes:

Happy Mother's Day

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care
what sex the baby is.
They just want to have ten fingers and tentoes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head,
rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby
for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on
page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire
neurons by the billions.
She wants a kid that can smack the ball out of the park
and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse,
a missing chromosome
or a palate that didn't close.

The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you
didn't see the kick ball coming,
and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months,
even years later,
took him in for a routine visit, or scheduled him for a checkup,
and crashed head first into a brick wall as you bore the brunt of
devastating news.

It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen,
quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications,
and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes,
the well-intentioned souls explaining how God is at work
when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-
saluting you,
painting you as hero and saint,
when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the
motherhood line yelling,"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you.
From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto
the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

Houston, We Have Metals...

OK, so Salamander is definitely detoxing (Dr. Amy Yasko called the latest and greatest UTM 'beautiful' and 'LOVELY detox'... I guess it all depends on your point of view.. LOL).

We have Cousin Aluminum pay a visit, as well as Auntie Cadmium and Uncle Lead. Looks like Cousin Nickel may be moving in for an extended visit, and he may convince Auntie Mercury to stay on for a bit longer too. Oh, and of course all of this at elevated creatinine, which means we are vacating a few viral cousins from the premises.

I DO think the Zithromax is helping with that incredible sinus congestion. I can hear the congestion getting looser, Salamander's color is also sooo much better than it was earlier this week.

He continues to be tired, moody and volatile (not surprising, considering all the 'family members' that are putting in an appearance) - yesterday's visit to the behavioral optometrist was a lot of 'fun' (his vision is perfect; 20/20 or better; but he continues to have substantial focus and eye tracking problems.. much better than a few years ago though... ).

[Oh, and of course Potatey is detoxing quite intensely too - that certainly explains all the nighttime sleep shenanigans I am seeing.. I AM going to try some melatonin with him tonite, because -I- desperately need some uninterrupted sleep..]

OK, off to feed the monkeys..

Wednesday, May 07, 2008


Very cautiously optimistic assessment.. I think Salamander IS doing a bit better today...

[and then Potatey just announced that he had a BM accident.. Sigh..]

Spend An Enjoyable Hour Or So..

Browsing through this lady's blog [yes, yes, time I dind't exactly have laying around.. ah well]

I like This Mom, I like This Mom a lot!!!

I have many, many reasons, after reading several of her blog posts, for liking her and feeling like I found a kindred spirit.

I'll mention two:

  • a blog post where she describes what it is like to be a "married single" (parent). Oh boy, did THAT one resonate/hit home.
  • her blog post titled Good Mommies, Strong Mommies.. I tend to cycle between the two types (if that is even possible). I am much more Strong Mommy than Good Mommy with Potatey. Salamander definitely needs much more of a Good Mommy approach - in almost everything he goes through, finding the WHY is essential (and 95% of the solution).

More thoughts on all of this when I have more time..

Tuesday, May 06, 2008

Doing The Zithromax Mambo...

It's been almost 2 years since Salamander needed antibiotics of any sort. But the poor guy has been miserable these past 4 weeks, and his congestion (I posted about this before) is just NOT clearing up. His headaches are getting worse and worse, and from what he's able to explain/show me, the location of the headaches/pressure is consistent with sinus pressure; poor kiddo probably has had more Motrin over the past month than he's had in the 12 - 15 months prior.

So something is just not right.. I know allergies are part of it, as is detox, but I need to get this stubborn congestion to clear out - and as all signs are there that the congestion has turned into a sinus infection, I really don't have much of a choice at this point.

So I started him on Zithromax tonite.. I've had good experiences with Zithromax before in dealing with sinus/upper respiratory infections. Yes, it's a heavier gun.. but I rather use a heavier gun right now and get things cleared out, then having to work my way through the Antibiotics Alphabet again (you know the song, Amoxicillin, Augmentum (sp?), Bactrim, etc - I used to know the little ditty by heart - I think I had worked my way through the entire Antibiotics Alphabet TWICE by the time Salamander was 30 months old).

Of course, the Zithromax will create die-off (as it won't just 'knock off' bad critters in his sinus cavities), so I'll increase the charcoal and I'll also increase the supplements he's on to support aluminum detox (plus of course tons and tons of probiotics..)

We'll be in for a few more days of 'fun and games' I'm sure.. but I should know by Thursday night latest if the Zithromax is helping..

[I did have a freak-out moment this morning.. in addition to the headaches, Salamander started complaining of double vision this I have a full vision check-up scheduled at his behavioral optometrist for Thursday afternoon. And if, between the Zithromax and the vision check-up, we can't get the headaches/double vision thing figured out, then I guess a visit to a pediatric neurologist will be next...We'll cross THAT bridge when we get there]


As we are, once again, in the throws of sensory processing difficulties in this house, I am reposting a link to this video (at a minimum, watch the first few minutes..)

Please, please, please .... all of you that are around my two boys on a daily basis, BE MINDFUL OF THE EFFECT SENSORY REGULATION ISSUES HAVE ON THEIR "BEHAVIORS"..

Very Powerful

[thanks Michelle for linking from your blog to this...]

Just watch this... Don't try to explain it, rationalize it, or understand it... Just FEEL it, and let your thoughts wander....

I truly believe (hope?) that human interactions are exactly like this. While you may start out on opposing rhythms, once there is a 'coupling' belief like a shared experience, magic CAN happen ...

Monday, May 05, 2008


A friend sent me an idea for what The Next Survivor Series could look like.

What I burst out laughing over was the 'six weeks' time period. How many men. who are not typically the primary parent, would actually make it beyond a 12 hour period????

And it's ironic really. I don't know how many times I've been told that 'being a mom' is all 'simple stuff that really doesn't take much of a brain'.

But whenever there is a situation here that the 'non-female' parent has to fill my shoes for a short period of time, not even the basic stuff gets taken care of.

Six married men will be dropped on an island with one car and 3 kids each for six weeks.

Each kid will play two sports and either take music or dance classes

There is no fast food. [no sh#t with the amount of food allergies we have here..]

Each man must take care of his 3 kids; keep his assigned house clean,
correct all homework, and complete science projects, cook, do laundry, and pay a list of 'pretend' bills with not enough money. [OK, so there are two here, but they have special challenges - so I guess they each do count for 1.5 kiddo]

In addition, each man will have to budget in money for groceries each week.

Each man must remember the birthdays of all their friends and relatives, and send cards out on time.

Each man must also take each child to a doctor's appointment, a dentist appointment and a haircut appointment.

He must make one unscheduled and inconvenient visit per child to the Urgent Care.

He must also make cookies or cupcakes for a social function.

Each man will be responsible for decorating his own assigned house, planting flowers outside and keeping it presentable at all times.

The men will only have access to television when the kids are asleep and all chores are done.

The men must shave their legs, wear uncomfortable yet stylish shoes, keep fingernails manicured and eyebrows groomed.

During one of the six weeks, the men will have to endure severe abdominal cramps, back aches, and have extreme, unexplained mood swings but never once complain or slow down from other duties.

They must attend weekly school meetings, and find time at least once to spend the afternoon at the park or a similar setting.

They will need to read a book at night to themand in the morning, feed them, dress them, brush their teeth and comb their hair by 7:00 am.

A test will be given at the end of the six weeks, and each father will be required to know all of the following information: each child's birthday, height, weight, shoe size, clothes size and doctor's name.
Also the child's weight at birth, length, time of birth, and length of labor, each child's favorite color, middle name, favorite snack, favorite song, favorite drink, favorite toy, biggest fear and what they want to be when they grow up.

The kids vote them off the island based on performance.

The last man wins only if...he still has enough energy to be intimate with his spouse at a moment's notice.

If the last man does win, he can play the game over and over and over again for the next 18-25 years eventually earning the right to be called MOTHER!

Sunday, May 04, 2008


Potatey is falling back in to his habit of getting up 'at the crack of dawn' (he's up by 6 am LATEST) in the weekends. And I don't think this is due to the sun getting up so much earlier now. He has black-out curtains in his room and you really cannot tell that it's light outside until those curtains are opened...
And the frustrating part of all of this is that, during the week, he is still 'deep asleep' by 6.45 am and I frequently have to pry him out of bed to get ready for school.

I get up very, very early during the week, and yes, 6 am is 'sleeping in' compared to that. But sjeesh louise, I'd love to be able to actually SLEEP until 7.30 am or so on Saturday or Sunday.

I think it's time to put a little bit of extended release melatonin back into his supplement schedule, just on the weekends, and see if that gets me an extra hour.....

The other thing that's been going on with him this weekend is that he's very, very clingy.. I cannot set one step away from him without him either following me around like a little puppy, or yelling 'mom, mom, where are you?' in that panicky tone of voice..

And it's NOT that I don't tell him where I am going.. the rule here is that we, always, always, let each other know, if we are leaving the immediate area where people are conglomerating, WHERE we are going. This is something I implemented way back in the days to help Salamander understand that, when I walked away from him, I didn't just cease to exist.. but that I was simply disappearing from his field of vision and that I would come back (once I realized this and consistently implemented the described action, Salamander's HOURS LONG hysterically screaming, crying tantrums at drop-off at his school diminished greatly...).

Maybe Potatey is not actually 'hearing me' when I mention that I am stepping away and where I am going...

Hmmm, guess I'll need to do the same thing with him as I do with Salamander, e.g., make sure he's actually looking at me, is paying attention to what I am saying, and then ask him to repeat back to me what I just said.

Potatey has shown this behavior before... and at that time it was detox related. I am sure that's what going on this time too. I'll be doing more testing on BOTH boys tomorrow anyway....

But man, between Salamander continuing to not feel well, Potatey getting up so early and then acting like a little 'Kling-on' the whole day, I am WIPED.

Saturday, May 03, 2008

Stop Blaming the Moms and Start Listening

Watch this, please.. and if you can vote, take action!!!

Friday, May 02, 2008

Wrapping Up (I Hope)..

on another afternoon of 'fun and games' out here...

And I am emotionally worn out and worn down...

Am I a 'bad mother' for, right now, having to fight the urge to 'jump in my car. to just start driving and to keep on driving'? [not that I would execute on that urge.. no way I would EVER abandon my boys].

Salamander is in the tub.. Potatey is destroying the house downstairs.... Hopefully by having all players invovled take a little 'break' from each other, things will smoothen out a bit..

Sometimes I think...

that being a 'so high functioning kid' is a curse, and not a blessing....

The expectations that society-at-large has of these kids is so enormous. They look neurotypical, and on good days they do an amazing job at ACTING neurotypical. But they are NOT neurotypical. They do not process socially ambigious situations, sensory inputs, nonverbal information, emotions, etc., like a neurotypical child does. And letting yourself be 'fooled' by a very high functioning kiddo's ability to mimic neurotypical behaviors into believing that they ARE neurotypical, does that child an ENORMOUS dis-service.

Salamander has come a long long way. There are days now that you really 'can't tell' that once he used to be on the severe side of the Asperger's presentation (as in, no eye contact, extreme perseveration, extreme sensory disregulation, little to no two-way reciprocal communication, very rigid, explosive hour long tantrums, extreme need to 'control' everything and everybody, limited ability to function and participate in unstructured social activities, etc., etc., - really, at diagnosis Salamander would have fit the 'HFA' box better, if not for the fact that he DID develop speech at around the age of 2.. now it wasn't exactly functional speech...).

But never for once have I lost sight of the fact that, despite all of the progress he's made, he DOES process information differently, that he IS different, that his brain works differently.

And never for once do I let myself become complacent during the really good periods and think that he no longer has Asperger's, no longer has LDs, no longer has different needs. I can 'back off' a little, but I can never, ever let go of all the structures, interventions, accommodations, and modifications I've put in place over the years.
And I certainly cannot ever give up on the life style I've had to implement to allow Salamander to thrive and grow.

I wish that others in Salamander's environment (especially school and 'the other parent') could look at the whole situation the same way. Yes, Salamander is maturing, he's growing, his coping skills are getting better.. but you need to be prepared for a 'bad spell' .. always, always, always.

I just spent almost 1.5 hours composing an email to school outlining Salamander's current struggles with issues that are happening at school. And it's a long, long list of 'stuff'...

None of the issues are huge issues on their own, they are nothing new, they've come up in the past, they will come up again. And Salamander really has been working his butt off in trying to deal with all these issues on his own. But this morning, the 'bucket spilleth over' and he fell apart.. utterly and completely.. and I saw behaviors that I had not seen in a while (remember, behavior is communication.. extreme behaviors are a cry for help!!).

At least I got him to talk (not always an easy feat.. as he is not always able to sort through and then label and then verbally express his emotions), and stuff came out that obviously had been eating at him for weeks!!!

Yes, he has not been feeling well for almost 4 weeks now, which is not helping (tough allergy season here, and there is some metabolic stuff going on too that I haven't completely figured out yet). And, yes, end of 4th grade is really really tough. Some of his class mates are definitely starting the hormonal/emotional transition from child to adolescent, I suspect that Salamander is one of those kids. And kids that have been really nice and supportive of Salamander since Kindergarten now all of sudden want nothing to do with him anymore (and that's confusing him and it's breaking my heart).

I know I'll be able to work things out with school again.. I just get tired of having to go over the same issues, the same needs, the same solutions over and over again..
See, I never ever 'slack off', why can't the rest of his environment take that same approach?

Maybe it IS time to 'give up' on keeping him in public school and finding him a school more targeted to his particular set of challenges. But where to find such a school? Salamander is so high functioning, he needs to be with neurotypical peers to learn to function in the 'real' world. So I need a school where that exposure happens. And I cannot afford the price tag that comes with enrolling him in the one or two schools in this state that would fit that model. Not without having to significantly scale down both boys' biomed program, which, for obvious health reasons, I cannot do....

Comments, thoughts, suggestions, shared experiences very, very welcomed....

[and I may get 'killed' for writing what I am about to write.. I watched the Autism Yesterday DVD yesterday. And I loved it. I think it's a great introduction for parents with newly diagnosed kids that 'no, you don't have to roll over and play dead. A lot of these kids are very, very ill and there is a lot you can do to help your child.' And I also think it's a great reminder for those of us that have been 'at it' for a while that 'yes, this is a fight so worth fighting'.

Where I get stuck personally is on the whole 'my child is recovered' thing. Granted, the kids featured were severely affected and they are obviously doing 1000% better.
But are these kids truly recovered?
As in, do they now process socially ambigious situations, sensory inputs, non verbal information, emotions, just like a neurotypical child would?
Are any short term memory deficits, speech issues, executive functioning challenges fully resolved?
No traces of any residual LDs?
No anxiety disorders, mood disorders etc?

If so, my heartfelt congratulations (and yes, I am more than a bit envious in that case) to those children and their incredible parents ...

But I can't help but thinking that some, if not all, of the issues I outlined above could be present and continue to need support and intervention. So is that true 'recovery', or are the children 'recovering', or 'in remision'.... Which of course in itself still is a great thing.....

I have heard parents with severely affected children state that seeing the child progress to 'Asperger's' type stuff would be a blessing. I can understand that, I truly can. I have spent enough time with severely affected kids to know that 'HELL' doesn't even come close to describing what these kids and their families go through. But trust me, getting to the 'high functioning' point is not the price it's made out to be. It comes with its own set of, significant and difficult, challenges....]