Sunday, December 24, 2006

A random collection of happy moments..

Typically my Christmas Eve is dominated by a flurry of last minute shopping, cooking, gift wrapping and what not... Odly enough, not so this year. Not that I don't have all of the above to do, I do ... just like any other year, but this year I am not consumed by it.. Things will get done somehow, and if they don't, that's OK too...

I find myself strangly at peace.. in a calm place.. something I have not experienced in years.. I don't know exactly how I landed in that place.. but it's nice to be here.. and while plenty happens during any given day that should throw me out of that calm place.. I have been able to 'stay put'.

And then this morning, it struck me. I am HAPPY! While there is a lot going on in my life that is absolutely NOTHING to be happy about.. au contraire.. For whatever reason however, the shitty stuff is not defining me right now, it's not holding me down or back...The shitty stuff just 'is', and I am dealing with it the best I can.. but I am not letting it take the joy out of the good moments.. I am no longer waiting for that other shoe to drop... I KNOW it will drop... and when it drops, I will deal.. like I always do...

Maybe, just maybe.. just like all of us have to make our own definition of what "recovery" will mean for our kids.. we all need to make our own definition of "happiness" as well? In all honesty, my list of what would make me truly happy had become utterly unrealistic (although conventional society would probably consider this list perfectly "normal"), considering the boys' and my own circumstances.. So instead of chasing relentlessly after what I thought was absolutely essential in making me happy, and this chase frequently involved demanding from the people in my life that they fullfill expectations that they aren't willing or able to meet, I am now simply enjoying what people ARE willing and able to give. And that mind shift is creating this.. somewhat odd.. inner calm....

[The irony in all of this, and for me this is turning into one of life's profound lessons, is that the people that by society's conventional rules I should be able to demand the most from, are willing to give the least ... and then there are truly amazing people in my life that are giving so much.. without any asking on my part...]

Without going on and on, here are some happy moments from the past few days:

Potatey having a price BM on Friday afternoon, despite the horrific stool report I got back a few days ago. And having another price BM on Saturday morning.. (things have gone south since in that department.. but that is because I've increased his gut treatments..)

Salamander telling me yesterday morning.. despite having been manically obsessed with toy catalogs and his Wish List for Santa for the past two months.. that if he had to choose between having lots of new toys and having his family, he'd choose his family...

Sitting on the floor with my two boys on Friday evening being totally silly with blowing up and letting go of a balloon.. and just watching the joy on their faces.. and realizing that for about 45 minutes I had totally forgotten about their supplement lists and what they needed to take next..

Attempting to bake cookies yesterday afternoon (and making a good cookie dough that does NOT involve the use of wheat flour, milk, butter, eggs or sugar IS a challenge), succeeding in making cookie dough and having the boys shape said dough into pretty decent cookies.. only to see the cookies completely "blow up" in the oven (I used a bit too much baking soda.. so the suckers rose to about quadruple their original size) .. and finding my two boys laughing hysterically as they are peeking into the oven...

Talking with my dad on Wednesday morning (he has a very aggressive form of Non Hodgkin's that will eventually 'do him in') ... and laughing so hard as he is poking fun at his own situation that I almost peed in my pants..

Having my two boys run toward me yesterday afternoon and body slam me so hard that I lost my balance, fell on the floor, cracked my head and saw stars for a while.. and just enjoying the feel of their two little bodies on top of mine...

Listening to my two boys chat while they are working TOGETHER on a lego project...

Having a dear friend call me yesterday afternoon to wish me a Merry Christmas and her not "batting an eye lash" as our conversation is interrupted every nano second by me having to "redirect" my two monkeys to make sure they stay out of trouble..

Hearing my two boys start a thrilling redemption of Jingle Bells, and realizing that they are singing the Madagascar version .. (Jingle Bells, Monkey Smells, Marvin laid an egg... )

I have no idea how long I will be able to stay in this 'happy place'.. for now I am just enjoying being here.. And whatever will happen, will happen...And the boys and I will survive...

Wishing you all a very happy and peaceful holiday season!!

Wednesday, December 20, 2006


Pun very much intended.. This is not turning into a good day...

I just received Potatey's repeat Comprehensive Stool Analysis (aka the poop check test, as it is affectionately known in my house).

Oh boy...

The first analysis was done in June of 2006 and uncovered a boatload of issues. I repeated the test early December to see how things have been progressing and to get an idea on how effective the various treatment modalities are.

The good news - no signs of cryptosporidium. Now crypto is a tough bugger, and it is not unheard of for it to be there, be not there and then to be there again. So I am not slacking off just yet on any treatment modalities there.

The second piece of good news - the candida stayed at the same level and we now have saccharomyces showing up. I supplement him with Saccharomyces boullardi (a beneficial yeast), and apparently it is taking.

The third piece of good news - his absolutely horrific sigA is slowly coming up. His gut pH has shot up from 6.5 to 8.0, so Dr. Amy's RNAs are definitely having an effect. His gut pH is now a bit too alkaline, so I need to back off on the RNA drops, so we can get to a neutral pH.

The bad news - Pseudomonas aeruginosa [sp?] is still very much present. I have been giving Potatey loads of caprylic acid, and it hasn't made one dent in the beast at all. The antibiotics typically prescribed to treat this bug are heavy duty, 4th or 5th generation type drugs - in addition to maybe, just maybe, wiping out the Pseudomonas, all good flora will get destroyed too. Not ready to go that route yet.. but I WILL have to revisit the caprylic acid routine...

We still have very high levels of E.coli as well, and the gamma strep levels have gone up a bit. No change in good flora, they are still abysmal.

So.. mixed bag... While we are making some progress in the 'gut department' for Potatey, we still have a long way to go (then again, I certainly hadn't expected miracles in 3 months). Back to the drawing board to revamp his 'gut bug' program..

Just another regular day, my dears, just another regular day...

We have MOLD!!!!!!

Bad, bad, bad news...Salamander has been coughing his lungs out for about 3 weeks now, and while the Zithromax has helped a little (just like all the natural anti-VIRALS he's taking are helping a little), he's still hacking..and hacking.. and hacking...

So having gone through an elimination of the "usual suspects" for a deep, wheezy, barky cough (bacterial ? - NOPE; viral? - NOPE), I am now left with "suspect no 3" - mold. We live in an old house and two of our bathrooms have a visible mold problem....

So me being the science nut that I am, decided to have Salamander cough into a mold culturing petri-dish (I stuck the petri-dish in his face on Saturday night when he had another coughing attack). After collecting "the sample", I put the petri-dish in a safe spot (you never know in my house where these kinds of things are going to end up.. I'll leave it at that).

Checked the darn thing at 24 hours - no growth.

Cheched the darn thing at 48 hours - no growth.

Big sigh of relief, he's not hacking up mold spores.

But me being the good little scientist that I am, decided to let the petri dish do its thing a little longer, after all we may be dealing with a slow growing mold....

Checked the darn thing at 72 hours - do I see a little speck?? Nah, must be my imaginition.

Checked the darn thing at 84 hours - FUCK!!! The speck has gotten A LOT bigger!!!!

Tonite will be 96 hours, I just checked the petri-dish again, and whatever is growing in that thing is having a ball... And I am seeing more specks.

So next step will be to send the petri-dish to the lab and have the 'fuzzy' analyzed and classified. And then I need to have some serious conversations with Salamander's doctors on how the HELL we are going to get rid of mold spores in HIS LUNGS!!!!


FUCK, FUCK, FUCK, QUADRUPLE FUCK - Just as I get a little ground back under my feet, we fall of the cliff again....And in addition to obviously needing to treat Salamander, I'll need to treat the whole damn house too (which ain't going to be THAT easy to do...)

Yeah, a holly jolly Christmas to you too......

Monday, December 18, 2006

I have a brain...

Why, oh why, is it that certain players (both in my professional and in my personal life) feel it necessary to micromanage me and to tell me exactly what to do, when and how?

OK, I am the first to admit that there are days that I don't know what century I live in, let alone what day, time, or season it is, but that is because I am multitasking to such an extent that I have to use all available brain wattage to keep all the balls that I am juggling in the air (and not have them crash land on your head, dumbo..).

That means there is no grey matter left to answer inane questions like ' did I ever give you XYZ back?" No, nitwit, if YOU don't remember whether you gave me something back, fat chance that I will remember. I have enough to keep track of, and I am not interested in becoming the 'uber knower' for yet another issue.

That being said, I DO NOT need a reminder to attend a meeting that I scheduled MYSELF!!

I have a brain, and I am NOT afraid to use it.

Sunday, December 17, 2006

Captain Underpants...

So Salamander recently discovered Captain Underpants...
And tonite, as I am doing my usual running around like a bat out of hell dinner drill, he comes up to me and says: "Mom, your name is Doofus Giggle Fanny".

Come again???
(yup, ran smack into Theory of Mind issues here.. Salamander assumed that I somehow knew that he had run my initials through The Name Change-O-Chart 2000; see Chapter 13 of Captain Underpants and the Perilous Plot of Professor PoopyPants).

Well, I am sure that several of you are going to have a field day with this one (I do have to say that Giggle Fanny has a nice 'ring' to it).. I like it much better though than what the assine holiday namer picked out for me.. Fuzzy Floppy Sprout... now, what the HELL does THAT mean???

Oh, I have pictures of "The Christmas Tree and The Boyos" (or is it "The Boyos and the Christmas Tree"?) - I have to pull them down from my digital camera. I'll try to put them up in the next few days...

Going to veg out now... Over and out....


is my problem today? I can't get out of my own head!!! I have a million things to get done (pay bills now that my bank account is off life support, run my year end taxes to make sure I don't get killed in penalties, tackle Mt. Vesuvius of laundry, help Salamander with his book report..), and as the monkeys are in a pretty decent space today, I should be getting LOTS and LOTS done.

But I'm not.....I have been compulsively checking my personal e-mail every hour or so in the desperate hope that somebody, ANYBODY, of my usual gang of suspects is dropping me a note and will give me an opportunity for a 10 minute exchange of wise cracks... NOTHING!!! NOBODY!!!

And here I am thinking that obviously they are all out doing fun stuff and I am feeling jealous(although intellectually I know that their silence most likely means the polar opposite.. when we autism mommies go MIA, it's typically because some major shit is hitting the fan..).

I need to give myself a good kick in the big ole' caboose and get going.. And write 1,000 times:

"I shall not compulsively check e-mail every 60 minutes and then get mad because there are no new messages."

"I shall not compulsively check e-mail every 60 minutes and then get mad because there are no new messages."

"I shall not compulsively check e-mail every 60 minutes and then get mad because there are no new messages."

Sjeesh.. I HATE it when I get this starved for 'adult' interaction (I absolutely ADORE my kids, but both of them are heavily into superheroes these days.. and I just can't seem to keep my attention from wandering during the 3,000th thrilling redemption of the epic battle between Bat Man and Mr. Freeze) and start acting this pathetic...


Is it Monday morning yet?

Updated at 5.30 pm:
OMG, I have new e-mail!!! And all of the sudden I feel my selfworth soar!!!!! Yes, I am one SICK chick....

Saturday, December 16, 2006

Our kids...

So today, yet once again, was a day of extremes for Salamander...

And just as I was about to beat my head against the wall as I just can't seem to put my finger on why we cycle so much from one extreme to the next (yup, Dr. Amy is right.. the roller coaster ride of detox..), I came across this link that apparently I had saved.....


Salamander will never cease to amaze me...

So Salamander is having a bit of a tough time today.. we continue to be in pretty heavy detox (aluminum I suspect).

Then after dinner, he pulls out one of his books and starts to read the following poem to us. With pretty good rhythm to boot!!!

The Generals

Said General Clay to General Gore,
"Oh, must we fight this silly war?
To kill and die is such a bore."
"I quite agree", said General Gore.

Said General Gore to General Clay,
"We could go to the beach today
And have some ice cream on the way."
"A grand idea," said General Clay.

Said General Clay to General Gore,
"We'll build sand castles on the shore."
Said General Gore, "We'll splay and play."
"Let's leave right now." said General Clay.

Said General Gore to General Clay,
"But what if the sea is closed today?
And what if the sand's been blown away?"
"A dreadful thought." said General Clay.

Said General Gore to General Clay,
"I've always feared the ocean's spray.
And we may drown." "It's true, we may
It chills my blood." said General Clay.

Said General Clay to General Gore,
"My bathing suit is slightly tore.
We'd bether go on with our war."
"I quite agree." said General Gore

Then General Clay charged General Gore
As bullets flew and cannons roared.
And now, alas! there is no more
Of General Clay or General Gore.

Boy, when this kid is good, he is GOOD!!!!!! Four months ago, he would NOT have been able to get through this poem, let alone understood what it is all about....

Friday, December 15, 2006


Checks from my contracting gig came in the mail today... I can breath again... and get my bank account off life support tomorrow.

I HATE $%@$!$#% school parties

OK, so I just cleaned out Salamander's backpack. And I find at least four notes describing as many holiday parties. With the announcement that parents will be contacted to bring in a variety of goodies.

GREAT... (NOT!!).

I pretty much spend 3/4 of my life in the kitchen (which I gladly do, as it has made a HUGE difference for my kiddos health), and I am doing my darnest to keep them away from 'junk food'. So now I am going to have to come up with suitable alternatives for my monkeys to bring to their respective school parties (as I am sure that once I pick Potatey up, my scanning of HIS backpack will yield a similar harvest of school party announcements).

Why do these parties have to be about FOOD??? How about just asking parents to go the Dollar Store and buy a collection on silly toys, some stickers and what not? Of course I realize that THAT requires a bit more creativity than sending Johnny into school with a bottle of soda and a bag of chips.. but Crickey.. it sure as heck would make my rather complicated life a little easier....Especially since my two monkeys are NOT the only kiddos in their class with food issues (hmm, maybe the food nazi mommies should band together???)


OK, 'nuf already.. I get it.. I really do

This little 'gem' showed up in my inbox this morning, as part of a larger 'pitch' for the latest and greatest supervitamin. I ignored the vitamin sales pitch, but these few paragraphs did hit me. HARD.

Pleading utterly and completely 'guilty as charged'.....

"I have nothing but admiration and respect for the extraordinary lengths to which women go for their families, their communities, their work, and the world. Call me biased, but I know women are more selfless than men and that society counts on their selflessness to function. I also believe that it is a losing battle to simply tell women to stop serving others. Our ability to get satisfaction from sharing and nurturing is a precious gift and should never be denigrated.

What you must also weigh against this, however, is how well you can serve others if you are emotionally or physically tapped, nutritionally and hormonally imbalanced, ill or just plain worn out. If I can give you any holiday advice, it's this: admit that you are the engine that's pulling the train and allow yourself the time to learn how to refuel. Right now, today, in the midst of this holiday crunch, decide that you will serve others best by giving yourself and your health a place at the table.

If you knew that by eating certain foods and avoiding others, taking a few natural supplements, and changing some habits, your mother, husband or child might be spared a premature death due to chronic illness, would you support them?

Would you shop and cook differently?

Would you take extra walks with them or ask them to quit smoking?

Of course you would.

The least you can do for them is to do the same for yourself."

(Marcelle Pick, OB/GYN NP)

OK dear friends, somebody slap me upside the head the next time I forget (read: ignore) this particular piece of advice....

What to do....

So it's no secret that I've hit a real rough spot emotionally this week. I am starting to do better again (not in the least due to the nice compliments that my two young men have been tossing my way, see my previous post)...

But I am still a bit fragile, and what I observed this morning in Potatey's preschool class didn't exactly help. In fact, it threw me back into some really, really bad memories.. of the time that things really started to "go south" with Salamander..

A little girl recently transitioned from the toddler group into Potatey's preschool class, and boy, is this little girl having a hard time with the transition.. At least, THAT is what I hope it is... I had an opportunity to observe her for about 40 minutes, and to be honest, I am really worried about this little girl.

When Potatey and I walked in at 8.45 am, this little girl (she just turned 3) was already in her third time out for the day. She had already been "physical" with two of her preschool mates (scratching, biting, spitting, the works), and had just had a meltdown of atomic proportions in which she had turned over several buckets of toys and thrown said toys at the teachers, the other kids and all over the classroom. Ms. J was beside herself with exasperation, and had carted this little girl off to 'the office' for the so maniest time this week. Ms. J even relayed to me that what I just described had pretty much been 'the routine' with this little girl since she transitioned about 2 weeks ago.

Alarm bells going off with anybody yet? Mine sure did....

As I was getting ready to leave, Ms. A walked this little girl back into the classroom and directed the little girl to go pick up the big toy mess she had made. The little girl just stood there, with a blank look on her face, with one of the toy buckets at her feet... like she didn't know what to do.
I approached her, made sure she could see me and that we had eye contact, explained that we were going to pick up toys together, gently took her hand and, using hand over hand, proceeded with picking up the toys and placing them in the bucket. Her little head snapped up, and she eagerly proceeded with collecting as many toys as she could possibly hold in her hands. She however didn't put them in the bucket until I directed her, by guiding her hands into the bucket, to put the toys IN the bucket. She then on her own proceeded in picking up the toys that were immediately around her, but then wandered off and went to sit in a corner BEHIND a book shelf.
Ms. J and Ms. M called her multiple times to come back and finish cleaning up, the little girl didn't respond at all. Just sat there with a blank look on her face. I went over (yes, I realize that I may have invaded the teachers' turf here.. but hell, I've lived this type of stuff for a looooong time, and I just can't walk away..), gently got this little girl out from behind the book shelf, walked her back to where more toys were strewn around, and got her back into pick-up mode the same way I did before...She spoke maybe 5 or 6 words the whole 15 to 20 minutes we were working on the picking up toys project (then again, maybe this is "normal", but I am used to my two, who never ever shut up..)

I commented to Ms. M that it seemed that this little girl needed a lot of hand-over-hand and very direct instruction, more then you would expect for a 3 year old. She agreed and just as we were getting a little more into it, all hell broke loose and this little girl went at one of her class mates again. Ms. M tried to intervene and this little girl let out an ear piercing shriek and started clawing and spitting at Ms. M. Ms. M could barely control her, and off to the office this little girl went... once again.

Ms. M and I talked a little more.. and I'll summarize the conversation by saying that there is definitely something going on with this little girl. Too many behaviors that are oh so familiar to me, and that combined with her poor eye contact and that blank look on her face (you all know what I am talking about)...I just don't know.. but I have my suspiscions...

I promised Ms. M that I was going to root through my Autism Spectrum Disorder books for the diagnostic checklists and 'tell tale signs' for the 2 to 3 year old age group and that I would bring those in for her. I also suggested that perhaps the preschool teachers may want to start taking more detailed notes on this litlte girl, and if a particular picture starts to emerge, to discuss this with her parents. And I know all too well that the latter is going to be a really hard conversation to have.

What struck me though is how quick some of the teachers were ready to simply consider this little girl a 'problem child'. And that their solution was to either exclude her from any further group participation or to get her out of the class room as quickly and as often as possible. I am the mother of such a 'problem child', and if there truly is something going on with this little girl, the problem is not this litle girl, the problem is in how people interact with her (and I will be forever grateful to Salamander for teaching me that very important difference). I was struck by how quickly she responded to my hand-over-hand/very specific instructions.. I think that there is a very bright but very confused little kiddo in there..

I haven't been able to get this little kiddo out of my head. Ms. M seems to have enough interest and willingness to explore what could be going on a bit further, I am not so sure about the other teachers... And when I mentioned the possibility of an 'Autism Spectrum Disorder', several of the teachers looked at me like I had two heads. They had never heard of ASD.....

Which bugs me to no end, as the age group these teachers work with is where you will start to see 'the signs'. And with the current statistics (1 in 165), these teachers are bound to meet a few spectrum kiddos over the course of their carreer. So why haven't the various day care provider organizations picking up on the fact that there is a serious need for staff education here? Similarly, why are the various schools that provide classes in early child development not making autism a standard part of the curriculum?

I'd love to work more with Potatey's day care to provide some staff education.. but to be realistic.. I have my plate MORE than full.

All I can do for now is provide Ms. M with some materials, and hope that, if this little girl's issues 'fit', she'll continue to ask me questions and that together we can help this little girl....

Thursday, December 14, 2006

We're going to be OK... I think...

As of about 20 minutes ago, Potatey picked up his trusted sword and battle helmet and started buzzing around the house again. Looking for the "Mommy Princess".

And when he found me, he lifted up the flap of his helmet, looked at me and said "I love you mommy. You are beautiful."

So are you, my handsome little man, so are you...

Note to Self...

Do not... I repeat Do not... try to get through a crisis on coffee and inner strength alone. Eating IS important.

If you do not take the time every once and while to eat something (even if the whole friggin' world is going up in flames around you), you end up loosing 6 pounds in 8 days... and that makes you feel real funny....(not that I couldn't benefit from loosing a few.. )

Another sleepless night in New England

UGH.. another night of "fun and games" (yeah, yeah, I still, albeit very, very vaguely, remember the days when those words means something else entirely...)

And today, BOTH kids will be home....

How the HELL am I supposed to get any work done so I can make a little money to pay all those friggin' medical bills that are piling up?

And double crap... I am going to have to put Salamander on Zithromax....I try to avoid antibiotics like the both boys good gut flora are so impaired...

I am going to have to go this route though this time... I've tried everything else to get Salamander's cough under control....So I'll have to tripple up on the probiotics for the next few days...

Wednesday, December 13, 2006

So sick of it all!!!

Today was definitely NOT a good day.. Poor Potatey ate something last night that did not agree with him, and as a result spent the hours between 1.30 am and 6 am this morning throwing up pretty much non-stop... Which resulted in me getting about 1 hour and 45 minutes of sleep (and I'm rounding up here..). Potatey ended up staying home from day care.. there was no way this poor kid was in any shape to go anywhere... He's bouncing back a little now, but he was definitely profoundly miserable today.. and it just broke my heart to see him this way...

So of course the lack of sleep, seeing my little man being so miserable, and a whole bunch of other s##t that happened today (including Salamander continuing to be in pretty heavy detox and now having a bad, croupy cough that just doesn't want to go away) conspired to create one pissah of a mood.

I am SICK of it all. I am sick of metabolic disorders, I am sick of chasing after kids with disgusting tasting supplements, I am sick of special diets, I am sick of cooking everything from scratch, I am sick of autism, I am sick of schools who just don't understand that being high functioning doesn't equal being neurotypical, I am sick of always having to be the 'strong one', I am sick of doing all of this on my own (no offense dear friends, I love you all, and you all are a very important part of my life and play a key role in retaining what little sanity I have left; but when it all comes down to it, it's ME and ME alone who is keeping my two monkeys well).

Yes, I am feeling very sorry for myself tonight.. Can I please? Just for one night?
No, because that's not who you are used to seeing???

Well, tough luck buddy... I am human and momma needs a break...

To quote Sheryl Crow:

God, I feel like hell tonight
Tears of rage I cannot fight
I'll be the last to help you understand
Are you strong enough to be my friend?
[made a small change to the lyrics here; Sheryl is talking about a strong man.. I have given up on having a strong MAN with me on this crazy rollercoaster ride..]

Nothing's true and nothing's right
So let me be alone tonight
You can't change the way I am
Are you strong enough to be my friend?

Lie to me
I promise I'll believe
Lie to me
But please don't leave

I have a face I cannot show
I make the rules up as I go
It's try and love me if you can
Are you strong enough to be my friend?

When I've shown you that I just don't care
When I'm throwing punches in the air
When I'm broken down and cannot stand

Will you be strong enough to be my friend....

Oh s##t, Potatey just woke up crying... Here we go again....

Well Hallelujah!!!

A press release from the National Autism Association just showed up in my e-mail Inbox.
The title "The Age of Autism: 'Problems' in CDC Data" (follow the link and you'll get to read Jay Olmstead's entire piece).

The kicker is really at the end, where the chairwoman of a government appointed panel of experts is quoted as saying:

"We know there's a major genetic component to autism, but genes cannot explain a rise over a short time period of a few decades," she said.
"We also know that environment plays a significant part, and the scientific community is just beginning to search for what those factors and exposures are."

OK, so part of me wants to just grab these people, shake them and scream in their faces "DUH.. you are just NOW starting to get that environment plays a significant part????" (while every day more and more kiddos are getting diagnosed and are not getting the real help they need for this very real PHYSIOLOGICAL (NOT psychiatric!!) disorder).

I decided however to stay in the holiday spirit and shout from the roof tops:


Now, let's hope that they remember that they need to follow the darn light to get to their destination....