Sunday, August 31, 2008

*Adventures* For Today

Carpenter Ants (in the garage, NOT the house.. TG)

Salamander this am "My belly feels really good, mom"

Perpetual Invasion of young people in all shapes and sizes (and I'm lovin' it)

Spontaneous Bicycle Wash

Walk to local Indian Bazaar

Salamander cracks his head on the side walk (he's OK.. he WILL have a black eye)

Boys playing with Pug (it's a dog breed)

*Somebody* having made a promise to Salamander that he could get a dog too

Momma *Bad Guy* for nixing dog promise

Pug owner coming to rescue and asking boys if they want to be dog walkers

Potatey locking us out of the house

Completion of school supply shopping (except for disinfecting wipes...)

Getting a very interesting email from the Feingold Association (and that's all I can say for now)

Lots of cooking (Shepard's pie ; turkey/beef meatballs, steak tips, baked chicken)

Potatey's Yeast Poop Extra-ordinaire

Two tired boys falling asleep easily

Paying lots of bills

Finding several medical expense reimbursement checks buried in between bills

Tired and very hungry (haven't eaten since 11 am this morning), and still need to get paying work done

To all of you that are in Gustav's path or who have loved ones in Gustav's path, my thoughts and prayers are with you.

Getting Ballsy...

[or would it be that I am getting *ovarian*???? Bwahahahaha]

Added at 11.40 am:
Upping the ante...I just donated to the fundraising pages of two of my friends, one to benefit the Community Autism Resources group here in MA, and other one to benefit the Doug Flutie Foundation. And I am going to match what I donated and contribute that toward the open loan requests on lend4health.

No, despite what you may think, I am not independently wealthy. In fact, just like all of you there are times that I do not know how I'm going to pay for my next batch of groceries, the boys' supplements, their tests, my utility bills, my mortgage, gas for my car, etc etc etc.
BUT so far I've been able to make things work, and because of that my boys have been getting (and will continue to get) the treatments they need. Resulting in both of them have a very good shot at a happy and fullfilling life.

What I cannot, what I will not do, is stand at the side line and not do what I can to offer that exact same opportunity to other families. So yes, these donations and contributions will result in *personal financial pain*. But as they say, sometimes doing the right thing hurts...


I haven't had much of a chance to keep up with the lend4health blog as of late... been a tad pre-occupied with my own sh#t. I did what I could to support the Lincoln Loan Days (and if you contributed, my sincere thanks), but I really wasn't able to add a whole lot of substance.

So I checked in on the blog, as I had a few moments while my printer is spitting out the next draft of a document I am working on, and up pops this gem by Tori:

"Never Underestimate the Generosity of a Stranger

My hubbie and I bought a new couch and were trying to get rid of the old one. It was a sofabed -- over $1,000 when we bought it. I tried to sell it on Craig's List. Lots of interest, no takers. I tried to Freecycle it. Again, interest but no takers. So I tried the Free section on Craig's List. Tons of interest, tons of people lined up. Nobody actually took it. Then a guy named Kelvin came into my life (well, kind of, I've never met him). He wanted the couch. He had a truck. He had burly buddies to haul it. On a rainy Friday, he came and got the couch (which was outside in the rain with tarps over it). I later emailed him to thank him for taking it and to make sure it wasn't too wet from the rain. He replied that it was great.

So then I got a little ballsy. I wrote him back and said, "I know the couch was free, but if you want to "pay" for it, go to Lend4Health and make a loan for a child who needs help." I pushed SEND and was sure the mystery man Kelvin would be sitting on his new couch laughing at my naivite. But whaddaya know? Five minutes later, in comes a $5 loan for Adam.

So if you are a skeptic. If you are a cynic. If the world has shat on you a few too many times. Just check out this site and see what's going on. It's really powerful stuff."

So here's MY challenge, to newcomers and frequent visitors, strangers and old friends - please take a moment to pop over the lend4health blog and read the stories posted there....

TIA

Saturday, August 30, 2008

Out With the Old...






[Oh, if only it were THIS easy in my personal life...LOL]

Yes, the *kid magnet* cost me a pretty penny, and yes, it's larger that what used to be there, so yes there is less backyard than there used to be (listing a few *complaints* I got from a certain person, although really, none of this is of any concern to him).

All the kids in the street though LOVE, LOVE, LOVE it and want to come over and play and play and play. Which will all benefit Salamander (and Potatey too, as he DOES get isolated) in the end...

Started Reading

Why Can't My Child Behave

This is one AWESOME book... I am familiar with the Feingold diet principles (have used many for many years now), but the materials that are out there until now were not that easy to read. This book changes all that.

I so want to get more copies to give to the school nurses at the boys' schools. I want to get a copy for my sister (mom/sis, are you reading this? I'm sure you'll recognize many of the issues described - I am adding a link to an article in German in which a mom of three adopted sibs with Fetal Alcohol Syndrome describes the effect of dietary changes on her, previously, unmanageable brood; http://www.faskinder.de/download/Nutrition%20FASD%20German%20May%2025.pdf), I want to get copies for the parents of my boys' cousins on their father's side, and I am so going to lend my copy to the neighbor I mentioned in an earlier post.

Heck, reading this book is becoming a great refresher for ME!! I am realizing I am allowing too many apples/apple products in the boys' diets (they both definitely have salicylate issues) - time to start replacing those with pear products.

Recent Additions to My Library....

Over the past weeks or so I received the following additions to my *dietary interventions, autism spectrum disorder, child advocacy, books specifically written for kids with challenges, adolescent challenges, other odds and ends* library. I haven't had much of chance yet to read, let alone browse, through them (and considering my current paying work load, they'll have to hold a bit):

The Encyclopedia of Dietary Interventions for the Treatment of Autism and Related Disorders

Why Can't My Child Behave
I am going to lend this book to a neigbor of mine whose 5 year old little boy (he's one half of a twin) reminds me very, very, very much of Salamander at that age. Mom IS concerned, but is getting no where with her pediatrician..

What to Do when You Worry too Much, A Kid's Guide to Overcoming Anxiety

Taking Care of Myself - A Healthy Hygiene, Puberty and Personal Curriculum for Young People with Autism
I'll share a funny/sad story around Salamander's first tentative attempt in ferreting out what will happen to his body as he gets older. My attitude has always been (and will always be) NO QUESTION IS OFF LIMITS. But I do reserve the right to answer with as many or as little details as I see fit. Salamander's body is changing and he's been asking me loads and loads of questions. I've been answering as best as I could, but heck, I am NOT a guy, I have never gone through the changes from boy child to man child.

So Salamander took his questions to his dad (makes sense, right?). Dad got all flustered (and really, the questions Salamander was asking were still rather benign, along the line of which body parts would get hairy first etc), and Salamander got brushed off with a: "I don't remember", and "I don't know." (These are canned answers I've come to know very, very well - they are uttered, almost in robotic fashion, whenever the subject matter makes the boys' dad even slightly uncomfortable. And trust me, it doesn't take much to make him uncomfortable.. ).

Bottom line, just like with anything else (e.g., teaching the boys' to pee standing up), mommy will also be the designated person for teaching the boys about the changes their bodies will go through, and answering any and all questions as to why *certain things* happen (you get my drift here..). Anybody still wondering why I ended up with *control over everything*?

Adolescents on the Autism Spectrum

If Your Adolescent Has Depression or Bipolar Disorder

If Your Adolescent Has an Anxiety Disorder

When the Labels Don't Fit

And last but not least, something for me: Split.
I have only been able to read a chapter here and there on this one; and what I've read sofar has hit me pretty hard (more on that another time). Let's just see I can identify with and relate to the writer.

[feel free to ask questions about any of these; if I haven't read them yet, I'll tell you. Also, let me know if there are issues around the linky thingies]

Friday, August 29, 2008

Mercury Rising...

[last one for today.. about to drag my very tired and sore a$$ off to bed.. my back is still giving me grief...]

Remember this post? Full moon, howling wolves and all that? I had sent in a first morning urine sample for Salamander for that particular day (Aug 15).

Oh boy, mercury excretion up with a factor 4 compared to the July 30th sample (that certainly explains the croup attack we had during that weekend). Nickel, Bismuth, Arsenic excretion up too. And a BIG bump in tin and tungsten excretion (B12 is definitely working...).

Also got a pretty wacky and wild UTM back for Potatey on a sample that I took on Aug 24 (yup, last weekend). I give Potatey enormous credit for holding it together the way he has, as I can tell you that if this had been Salamander's UTM, Salamander would have been MISERABLE!!!

Bottom line, both boys' detox is ramping up... (and no, I am not using any chelation agents, they excrete entirely on their own now that their various metabolic pathways are better supported).

Waiting for one more UTM for Salamander (from 8/23). Am planning on doing another round of testing on next week Wednesday.

Long and very disturbing...

On a Positive Note...

The new play set in the backyard is doing exactly what I hoped it would do. It's an absolute KID magnet. I don't think I've ever had this many kids pop over and ask if they could come and play. At one point I had NINE (!) kids run around in the backyard, and they were all playing TOGETHER, with Salamander right smack dab in the middle of the maelstrom.

Exactly what I wanted....

(pics are on my digital camera and I'll post them as soon as I have a moment to upload them..)

I HATE..

the fact that every single time I need for the boys' dad to step up to the plate and take care of the boys for an extended period (note: I'm talking hours, not days), I get trapped in this passive-aggressive b.. s...

So I'm way behind on work.. waaaaay behind.... and to add to the *fun*, two of my deadlines got moved up... to next Monday nite and next Thursday morning respectively.

So I really needed to work today, and I really need to work tomorrow and Monday as well (Tuesday is more school visits, last minute school supply shopping and clothes shopping if I don't pull THAT off on Sunday, and then Wednesday is orientation day for Potatey/meeting with school medical personnel at Potatey's school, so those two days are basically shot).

I let the boys' dad know that I need to be able to put in a solid 10 hours today(preferably in one long go, as I just don't make enough headway in five 2 hour stretches as I would in one 10 hour stretch), as well as Saturday and Monday.

He agreed to take care of the boys (why did I ask him, you ask? Only because my other childcare options are not available or otherwise occupied..)

Today was a total disaster... all of the sudden there were all kinds of things that HAD to get done in the am. So instead of getting started at 8 am, I didn't get started until 10.45 am (!!). And then there was an *interruption* at 2.30 pm, another one from 3.15 till 4 pm, and then I had to, temporarily, call it a day at 5.15 pm (I'll be working again once the boys are asleep... sigh). So how many hours was I able to put in so far? You can do the math. NOT ENOUGH!!

So as said, I'll be working tonite until God only knows when until I have reached the goal I wanted to reach for today. And I am afraid tomorrow and Monday will probably be the same deal.

I HATE this begging, pleading, cajoling crap. It's not like I'm asking for time to get my hair done, or my nails, or to go shopping for myself, or just sit on my ass. I am asking so I can do paying work!!!!

UGH... I am seriously, seriously considering checking myself into a hotel for the next 3 days so I am not *accessible* and not *reachable*, and I can actually get stuff done!!!

Thursday, August 28, 2008

Both boys have settled down for the nite... and they are so fried... They both suffer from transition fatigue, Potatey much more so than Salamander.

Of course Potatey's transition is the bigger one.. he's leaving a school/friends/teachers behind that he's been at for over 5 years. He's especially sad about leaving one particular teacher behind....
And he's also sick and tired of hearing me talk with people about his food allergies and other medical challenges. I do try to have most of these conversations WITHOUT him buzzing around within ear shot, but that hasn't always been possible. Please don't misunderstand, Potatey is fully aware of his medical issues (I'm very big on self advocacy in this area.. plus kids like Potatey and Salamander have amazing instincts as to what goes on in their bodies). Potatey's attitude, however, is: 'So I have food allergies, some foods could make me extremely sick, even send me to the hospital, so I know not to eat any foods or drinks that are not from home. And yeah, there are days that my body doesn't work so good, and those are the days that I am super tired, that I can't run, and that my head and belly feel funny. So what? What's the big deal?" [I hope he maintains THAT attitude.. ] He doesn't *get* that for people that do not yet know him and his particular presentations and signals all this stuff can be pretty overwhelming. After all, he's been living all this stuff for as long as he can cognitively remember, this is *situation normal* for him...

Salamander just wants to get started. So we've visited school, we met with the teachers and aides, we are almost done with getting his school supplies together, we go school clothes shopping this weekend, so as far as he's concerned we're done and ready. He definitely has trouble gauging time and the passage of time, and as far as he's concerned next week Wednesday is a life time away. But others around him continue to talk about start of school, there is a built-up of anticipation/anxiety for which there is no real outlet as school is not starting for another 5 days. If past years are any prediction, I'll see a major meltdown either Monday evening or Tuesday midday...

I'm tired too, having to go over the boys medical stuff again, and again, and again and again and again is wearing me out. Not so much going through the details themselves, but regurgitating their histories brings back all kinds of memories of the really bad space we were in before I figured all this out. And my crooked back is not helping!! At least it does feel like all body parts are back in their proper locations, but the muscles in my back and trunk are tight and sore all the way from my tailbone up to the base of my skull. So on that note, I am actually going to resort to taking a few muscle relaxants and will then go to bed to rest. Tomorrow is going to be another loony day....

I Think Parents of *Normal* Kids...

are the weird ones..

Oh, the stuff they worry about (based on questions asked earlier tonite during the parent orientation session at Potatey's school).

A few examples:
Why does the before school program only starts at 8 am? Is there any place I can drop my kid off by 7 am?

We don't have time for breakfast at home. Can the kids buy breakfast at school?

My little J wants to be in the same classroom as her friend K. Can we switch?

Can I pick my child's teacher?

My little R only eats pizza for lunch. But on the school menu you only serve pizza once a week. Can my little R have pizza every day?


I couldn't help but shake my head. I ended up stepping out during the Q&A session to meet with the school nurse to start discussions around Potatey's medical challenges. I had a wonderful chat with the school nurse and she asked me on the spot to become a room mother for Potatey's class (as we got talking about sourcing safe supplies for class room projects). And as I told her what I tend to do for the boys for birthday treats and small celebrations, she suggested I contact the PTO to have my ideas and suggestions adopted schoolwide....LOL

I told her I'd think about the room mother/PTO thing. Past experiences in this at Salamander's school have been less than positive, but that was 4 years ago, and general awareness around food related issues and willingness to look for non-food alternatives has changed...

Quick Update...

New play set installed... CHECK

Trip to Whole Foods Market... CHECK

Visit w/ Potatey to his new school... CHECK (went very well. School is appropriately nervous about his food allergy/metabolic dysfunction situation, and I think that nervousness will work in Potatey's advantage as they'll be super careful)

Visit w/ Salamander to his 5th grade class and the Pragmatic Learning Center... CHECK (visit to the PLC went well, but there will be 11 (!!!!!!) kids in the PLC this year, and several of the kids will be using CHEERIOS as re-enforcers (as called out in their IEPs.. GRRRRRR... what IS it with people using FOOD re-enforcers), so now I have to figure out something equivalent for Salamander so he doesn't feel left out; visit to 5th grade class room and teacher went very well, BUT the teacher is preggers so she'll be going out on maternity leave probably before half the school year is over!!!! GRRRRRR x 2)

Brownies for Potatey's last day party... CHECK

Still one more school visit to go - parent orientation tonite at Potatey's school, and I need to make sure that at that time I make an appointment with the school nurse, the teacher and the class room aide for next Wednesday to talk specifics for management of Potatey's medical issues. I hope my brain will still work by the time the parent orientation starts (6.30 pm).

And to add to all the fun?? I threw my back out yesterday evening and have barely been able to walk, let alone bend and reach. NOT a good thing as I spent 85% of my day on my feet, running around, bending over and reaching for stuff... UGH.

Wednesday, August 27, 2008

Until I can back to writing substantial posts myself, I want to leave you with this.

Read it, ponder it.. I know I will..

Sorry... crazy busy... waaaay behind on work... lots of last minute school issues/medical paperwork etc to be worked out.... and I just realized that with both boys having grown as much as they have over the summer, they have NO CLOTHES THAT STILL FIT (beyond the swim trunks, sports shorts and muscle shirts they've been running around in all summer). So I need to squeeze in a clothes' shopping trip...

And I need to desperately make a trip to the Whole Foods as I am running out of the boys' foods. And as Friday is Potatey's last day at his current school, he wants to share some of his special brownies with his class mates (and I was informed by his teacher this morning that another child will be bringing in pizza on Friday for HER last day, so I need to make Potatey one of his special pizzas as well).

And their new playset is getting installed tomorrow (yes, the day that I have umpteen gazillion school visits and parent orientation sessions).

Bottom line, don't be surprised if it's a bit quiet over here on the blog for the next several days. Too much to do, not enough hours in the day (and while school fully starts again next week Wednesday for Salamander and next week Thursday for Potatey, I have a major project deadline next week Friday).

Tuesday, August 26, 2008

Lincoln Loan Days....

My blogging friend Jeanne put up a brilliant post around the microloan concept behind lend4health. She's saying everything I wanted to say (but I just couldn't find the right words). So without much further ado, I hereby introduce Lincoln Loan Days....

Won't you join the challenge? And yes, couple of bucks or even $1 contributions to a loan are all we're asking for...

Oh My Goodness - I just received word that one of the outstanding loans got fully funded very early this morning!! My sincerely thanks to the very generous soul who fully funded Justin's loan.

One down, four more loans (for now, until Tori puts up more loan requests..LOL) to go...

Monday, August 25, 2008

Letting These Speak For Themselves...






Oh, pretty healthy lookin' bunch of partially vaccinated *little parasites* eh (my kids are the healthiest looking bunch in the entire street; and Potatey is by far the healthiest looking kiddo in his entire daycare of 200+ kids)?

Yes, I am PISSED. A blogger friend of mine, who has gone through hell and back several times over and wouldn't hesitate to do so again for her children was called an unfit mother today by the vaccine-nazis. Do your research people, most of us landed in this mess BECAUSE WE (ir??)RESPONSIBLY DID VACCINATE!!!!

As I said on said friend's blog, I'd rather deal with two+ weeks of measles, mumps, rubella or chickenpox (Oh my.. my kids could get the oh so deadly chickenpox .. I am shaking in my flipflops) than deal with what I've had to deal with for the past 8+ years (and how ever many more years it's gonna take to undo the damage done).


Oh yeah, and *pill boxes* like this I put together for *fun*....

A Case of Non-Directional Frustration....

8/26/08 Update - Salamander's teacher called me this afternoon and she'll make sure she's at his school on Thursday afternoon during the same time period that the Pragmatic Learning Center has it's open house. She was actually really, really nice about things.

So I'll make sure to get there as close to starting time of the open house as possible. And maybe we'll go to visit her and the new classroom first, that way we won't keep her any longer than necessary.

Jeanne - thanks for the feedback. You are right, the *honey approach* works best (and I use it ALL THE TIME in my business). I just seem to have a much harder time using that approach when it comes to my kids. I need to get better at looking at school issues too as a business situation.

(and other people too have confirmed that the secretary at Salamander's school is a, well how shall I phrase this politely, *difficult person to get a YES answer from*? LOL)

So we're in the last full week before school starts ... So just like I've been doing for the past 5 years, since Salamander entered public school, this week is *transition back into school* week.

Now I don't need to do too much adjusting on their daily schedules. Bed times have stayed the same, and so has Potatey's getting up time (that kid is always awake at the crack of dawn). Salamander has been sleeping until about 7.30 - 8 am, some mornings even until 9 am, so I do need to bring him back to the 6.45 am wake-up schedule.

Another part is getting familiar (again) with the bus routine, the school building itself, where is the new class room, who is the new teacher, where are the bathrooms, what is the route from the class room to the cafeteria, the gym, where do the school buses drop off, where is the pick up for the school buses etc (and in case anybody thinks I am overplanning/overthinking this, as *the kids will figure all of this out on the first day of school*, then obviously you've never dealt with a child who gets extremely anxious when he does not know where everything is going to be as that means he cannot predict or anticipate how things are going to play out, and whose overwhelming anxiety manifests in aggressive outbursts).

Salamander NEEDS a lot of transition planning. School has gotten better with this over the years; we already know who his new teacher is going to be, his aide will be the same person as the last 2 years, and his special ed teacher is the same person as last year. The principal of his school reminded me on the last day of the 2008 school year that we could come visit anytime, "just give me a call'." [we all learned the very hard way that extensive transition planning is a MUST - I can't write about it here, but the transition from 2nd to 3rd grade was a total, absolute, going down in flames disaster, and we all vowed to not put Salamander in that kind of a *doomed to fail* situation ever again).

This weekend a very nice letter from Salamander's special ed teacher came in the mail, inviting Salamander to come to school on Thursday afternoon to visit the Pragmatic Learning Center to get familiar again with the room set-up, talk about the daily routine, catch up on what has happened over the summer, etc. etc. etc.

So of course I called school this morning to 1) accept the invitation, 2) to inquire whether Salamander's regular classroom teacher may be available on that same day to meet with Salamander and myself; just to reacquaint, to visit the class room, to scope out bathrooms/route to cafeteria/gym etc.

And I get utterly stonewalled by the school secretary (yes, I DO understand that she needs to be gate keeper; but heck, she's known me and Salamander for 5 years now, and she KNOWS we do transition visits EVERY SINGLE SUMMER IN THE LAST WEEK BEFORE SCHOOL). She hems, she haws, she tells me that she'll *try to leave a message for Salamander's teacher but that she's not sure that the teacher will be in before school starts*. I gently remind the school secretary of the clauses in Salamander's IEP that spell out the transition plan. And I get the exact same response. So I ask her to write down a message for Salamander's teacher with my cell phone number and a kind request to please call me at her earliest convenience to schedule a visit with Salamander and myself. School secretary does as requested and places the message in the teacher's mailbox, with a *I'm not sure if she'll come in to get the message.*

GRRRRRR. So I am not expecting a call back anytime soon. However, if I have not heard back by Wednesday mid morning I am going to give the school principal a call, and then we'll see if we can get the ball rolling that way.

I understand that there isn't a requirement for teachers to be in school BEFORE school starts, and I wouldn't be so peeved about the response I got if not for the fact that I KNOW what will happen (especially with Salamander in his current state) if the school visit and other transition activities don't happen...

Now compare the above with me contacting Potatey's school to ask THEM about a visit to school this week. Now Potatey is my extremely flexible, go with the flow kiddo, so technically he doesn't need the transition planning. BUT he's grown up in a house where a lot of previewing and transition planning takes place as part of the daily routine, and he's asked me several times over the weekend if he could visit his NEW school (he's transitioning from a full day daycare pre-K to public Kindergarten) BEFORE school officially starts. So I called the public Kindergarten (which, by the way is in the exact same town and part of the exact same school system as Salamander's elementary school). I get the school secretary there to, who IMMEDIATELY transfers me to the school principal. And the school principal's response to my *can we come visit for a bit this week, just to see where the class room is, where the kids cubbies are, bathrooms, cafeteria, school bus drop-off/pick-up* is a resounding *Of course, when would you like to come in? Would Thursday work for you, as then the custodians will be all done with cleaning and floor waxing etc. How about 9 am? I'll meet you at the door and I'll walk you around*.

WOW. What a difference eh?

Now don't get me wrong, I WILL get Salamander's school visits worked out too. But the difference in response was striking.
And especially as Salamander's school should KNOW by now how important the transition visits are, I would have expected to get the more accommodating response there...

Yes, I am feeling a lot of non-directional frustration....

(and now that I've had a chance to vent = on to the NEXT part of transition planning - umpteen pieces of medical paperwork for both boys, and getting a stash of EpiPens for Potatey...)

Rumors..

IT IS ON: I just caught the first 15 minutes or so. So far it's a nice piece, but a little blah...
Along the lines of "Asperger's is a neurological disorder that's present from birth; it's not the same thing as autism but a close cousin; the recent rise in diagnosis is because of better understanding; people with Asperger's have hyper focus; people with Asperger's frequently have special talents"; etc. etc.

I will get the podcast and will then listen to it when I actually have time (and not while I am running around doing 18 million other things).

One more thing - the man, Nicky, is extremely articulate and shows an amazing capacity for higher order thinking (albeit very *self* focused). Just listening to him, I am not surprised that he *flew under the diagnostic radar* until he was 20 years old... No way Salamander would have been able to pull that off though. But that may be because he is dealing with so much more than *straight* Asperger's....


Rumor has it that WBUR will be rebroadcasting its Jan 08 show on Asperger's Syndrome at 11 am today.... I've searched the WBUR website and can't get confirmation.

Here's the link to the Jan 08 show. I'll update this post if it is being rebroadcasted (I may try to get the podcast in that case).

Sunday, August 24, 2008

And this is what we need the men in our lives to do MORE off....

To all fathers, brothers, friends and lovers - don't try to fix, don't try to correct, don't offer advise, don't tell us how YOU would have done things better, don't tell us that if only we weren't so emotional about things...; just shut up and listen....


Oh, and one MORE thing. Do NOT eat our left over pizza without asking first!!!

One slice without asking first, OK. Two slices without asking first, if we really, really dig you. But no bleeping way will we let you get away with eating 4 or more slices of OUR left over pizza without asking first. There's a reason that it's left over - as in so we can have another meal at another time??????

Doing OK...

I know, I know.. very quiet from my end this weekend... I have/had started multiple posts on a variety of topics, just haven't had the time/energy to finish any of them. Plus I've been a tad pre-occupied putting the boys' gut bug programs together.

I'm ramping up on treatments for both boys (yes, I AM insane - who in their right mind tries to address dysbiosis issues in TWO kids at the same time...). And things are going as well as can be expected.

Potatey is handling things *OK*, I try to do most of his treatments during the day, as I know trying to get stuff in just before bed will create extensive sleep shenanigans, and that is the LAST thing I need. He is now taking S. boullardi daily, Dr. Amy's mycology RNA twice a day (THAT STUFF PACKS A PUNCH), and I started Candex for him yesterday. And this is on top of stuff I had already in place - as I mentioned before, I have a decent anti-bacterial program in place for him (and as evidenced by HIS most recent CDSA, that part is working), but I had been sloppy on the anti-yeast part. So THAT is what I am rectifying now. Potatey is tired, he gets a little whiny about 1 hour after taking the Candex, but nothing I can't manage.

Salamander is being a real trooper. His gut dysbiosis problem is much much much more extensive than Potatey's and I've had to pull out some heavy guns. Things are starting to work.. we have nasty BMs, he is even more tired than he was before (if that's even possible), and he's definitely whiny about an hour after getting a *gut bug cocktail* [I am not posting the details on Salamander's gut bug protocol - there's a lot to it that needs careful explaining and needs to be put into the context of the particular SNPs Salamander is walking around with - I'm happy to share, but will only do so *off blog*].
BUT Salamander's aggressive outbursts have dropped.. a lot.. and that happened virtually overnite after I introduced/increased supplements to raise his gut pH and to calm down the inflammation. DO NOT DISCOUNT THE EFFECT GUT PAIN HAS ON YOUR CHILD'S BEHAVIORS!!! And despite Salamander being highly verbal, he was not able to recognize/tell me that he was/is in pain. And considering the inflammation markers he must have been/must be in considerable pain.

Of course you'll see that about an hour after I have this post *go live*, the bottom drops out (it always happens that way). And you'll know if that has happened, as I won't be posting much in that case.. LOL

But right now, things are going as well as can be expected. So I'll focus on that. And whatever happens, happens....


P.S. Popped over to the lend4health blog just now, and Tori had a note up that cuts right down to the chase. I HAVE removed the name of the kiddo she used as an example, but you'll get the drift...Pick any of the kiddos that have outstanding loan requests right now, and consider contributing a couple of bucks.. Really, any of us can loan $2 or $3.... (and if you already did contribute to a loan, my sincere THANKS)

Think About It . . .
Yesterday (Friday), we had 180 visitors to Lend4Health. XXX
still needs $800 to fulfill his loan. If each of yesterday's visitors had lent a mere $4.45, XXX would have his loan today!

P.P.S.
My blogging friend Jeanne just put up a brilliant post around the microloan concept behind lend4health. She's saying everything I wanted to say but just couldn't. So without much further ado, I hereby introduce Lincoln Loan Days....

Friday, August 22, 2008

Tori, Tori, Tori...

Am so glad to see that my blogger friend Tori (yes, the one that's behind Lend4Health) got her moment on AoA.... Oh, and to any fellow *Yaskovian's* that pop over here now and again, do check out the loan request for these two little brothers. If a whole bunch of us pitch in $5 - $10, we can send these two little guys on their way in putting more foot steps on the road to their recovery.

Boys and I were off for most of the day visiting with friends and their kids. Our collective brood (SIX boys.. LOL) had a blast. I am a little sunburned, and even though I hardly had to run after my boys or coach or facilitate or scaffold or redirect at all (!!!!!!!), I am tired....

My tiredness however, is a GOOD tiredness, the way you feel after a good work-out session in the gym... No, I didn't physically work out, but I got a chance to *work-out* my soul, by sharing about what's been going on in my house with two wonderful ladies who *get it*.
EG and KG, you know who you are... Thanks for listening to me, for validating my fears and my hopes, for sharing my joy in how far my boys have come, and for just *being* with me. My soul feels cleaner, my thoughs are clearer, and I can actually *feel* that I will sleep peacefully tonite. Thank you, thank you, thank you (and hell yes, we WILL do this a lot more often)

[heads-up, I may be in need of *more* in a couple of days. I started Salamander on Juniper Berry tonite...]

Thursday, August 21, 2008

Interesting *bipolar* articles..

Was made aware of these two articles today:

"Two genes that influence the activity of nerve cells in the brain may play a key role in a person's risk for bipolar disorder, marked by dramatic swings from depression to manic behavior" [click here]

AND

"Insulin resistance is the basis for metabolic syndrome, a condition in which a person suffers from increased weight, as well as high blood pressure, cholesterol, triglycerides, glucose, and insulin. Metabolic syndrome predisposes a person to diabetes, heart disease, and several forms of cancer. It is also directly linked to Alzheimer's disease and other brain disorders. Now scientists are finding that insulin resistance, and in some cases, metabolic syndrome, is linked to bipolar disorder. " [click here]


Let's just say that a lot in both articles resonates....

Yes, *binge* posting tonite...

There was a discussion around People First Language on AoA, yesterday I believe. And while I typically read Dan Olmstead's pieces *nodding like a bubble head doll*, I couldn't find myself in this particular piece and actually find myself agreeing a lot more with this guy. While I certainly consider Salamander to be so much more as a person than just the sum of his diagnoses (medical and psychological), putting those diagnoses in People First terminology DOES take away from his day-to-day struggles.....

But in the end how people refer to their kiddos with challenges (sorry, refering to the kiddos as *being special* or having *special needs* just doesn't sit well with me right now - there is nothing *special* about all the gut and metabolic/mitochondrial stuff we're dealing with in this house..) should be up to them, and even to a larger extent, the kiddos themselves (if they're able to do so)...

On A Much Lighter Note..

Can I call myself a *contributor to a book* now?

Excerpts from two of my many, many, many, many posts on the ANDI yahoo group (I think I am completely bastardizing the actual yahoo group name.. I'll look it up when I have more time) made it into Karyn Seroussi & Lisa Lewis' new book "The Encyclopedia of Dietary Interventions for the Treatment of Autism and Related Disorders".

If you have the book, check out pages 104 and 127.

(yes, yes I am tooting my own horn... so bite me, I need something to feel good about today, after completely effin' up on regular testing of Salamander's gut environment)

####
My two boys have been thorougly enjoying trying out recipes from this book. Thing is, it's not geared towards kids with extensive food allergies, so every single recipe we've tried I had to adjust for their particular dietary needs. NOT as big of a deal as it sounds, after all I've had well over 4 years of practice. I did contact Usborne (the publisher of the book) to ask 1) if they have similar cookbooks that are geared towards kids with food allergies, and 2) if they do not, if they would be interested in adjusting the recipes in their existing cookbooks to make them suitable for kids with allergies. I don't expect any response, but maybe I'll be pleasantly surprised. In the mean time, the boys and I will keep experimenting and adjusting.

####
Earlier tonite, I sat next to Potatey's bed and watched him drift off to sleep.... He is SO precious......There is so much more I want to say about him, but I can't find the words right now.... I am going to try real hard to watch Salamander fall asleep too.... I need a little reafirmation that, despite all the craziness going on, they are doing OK, that they will be OK....

####
P.S. [warning, *adult* eyes only] I just had to add a link to this blog post. I've been reading this lady's blog for a few weeks now, and every single post I've read so far resonates. As to this particular post? I wish I had her *ovaries*.. I can think of a hunk or two or three or four (younger and older.. LOL) I'd like to send this letter to.

Salamander - FM Update

Well, as they say, when it rains it pours....
Got Salamander's FM (Fecal Metals) results in the mail today...

Mamma mia - definitely a TT.... And this was a *spot check* (pun, oh so, much intended), so he may actually be *dumping* this at any given moment... Poor kiddo, let's just say it certainly explains some of the ugly CDSA results..

Funny coincidence. I did a FM exactly a year ago (I also did testing in between, but I'll use the 7/23/07 one as comparison). Compared to that one, I noticed the following:

Mercury excretion: down with a factor 2 - not surprising, as I've seen mercury now come out consistently in urine - and I sincerely hope that at some point there will be no more (or very little) mercury to excrete.

Antimony, Arsenic, Beryllium, Lead, Thallium excretion: about the same as a year ago

Bismuth excretion: UP with about a factor 3 - and I've seen bismuth come out in urine over the past year too..

Cadmium excretion: Down with about a factor 2

Copper, Nickel, Uranium: UP with about a factor 1.5

TUNGSTEN: Way, way up.. all the way to 1/3 in the *red zone* (B12 supplements doing their job?)
Cr@P indeed......

Grrrrrrr....

Is there a way to password protect only certain posts? If there is, let me know.

I need a good rant, a really GOOD rant. And it's about what happened/is happening after I informed Salamander's other parent about the CDSA issues, what I'll need to do in the next 10 days to address some of the issues, and what the effect of the treatment plan will be on Salamander's already rather volatile moods.....

I am so tired of being the accommodating one, of having to take the other parent's *special issues* into account and why it is *OK* for him to disengage EVERY SINGLE TIME a challenging situation arises....

Funny thing.. I can NEVER, EVER use a mitigating circumstance as an *excuse* for why I cannot get certain things accomplished, or why I am scared or why I am tired. On the other side, every little *hick up* (and admittedly, Salamander's CDSA results are more than a hick-up, but I'm talking in generalities here) is enough for a total physical and mental *collapse*. It's a very good thing for my boys that at least one parent has some backbone...

Wednesday, August 20, 2008

The Gut, The Bad and The Ugly...

Had some time to look over Salamander's CDSA results and put them into some context:

The Good:
sIgA has NEVER EVER looked better. And this means that, despite the continued dysbiotic flora issues, Salamander's gut based immune system IS starting to come on-line.

Digestion/Absorption parameters have continued to improve (well, duh, considering Salamander's incredible growth since September 07..)

Short Chain Fatty Acids: NORMAL for the first time ever, which means that I'm getting Salamander's Fatty Acid Digestion issues under control.

Beneficial Flora: Really, really good growth of bifidobacterium and saccharomyces, so some good flora are finally getting established.

The Bad:
Gut pH is too low (too acidic)

No growth of lactobacillus, despite constant supplementation.

Escherichia coli (E. coli; by many considered a beneficial flora) too high. You want a nice variety of good flora and right now the balance between lactobacillus and E. coli is not the way it needs to be.

The Ugly:
Gamma strep is too high, and we had a new Escherichia strain take up residence (Escherichia hermannii).

Overgrowth of pseudomonas aeruginosa and candida albicans (but I've licked two nasty strains of candida in the past; I know I can do it again).

Very high lysozyme, which is indicative of inflammation in the gut.


So we've got our work cut out for us. We are two weeks away from start of school and my plan is to blast the bad critters hard for the next 10 days or so (while at the same time working on bringing gut pH up and getting the inflammation down). Poor Salamander, he's just getting his feet back under him, and now I have to pull the rug out from under him again....But I've got no choice, I have to get his gut back in better balance...

(but as testimony to how far Salamander has come.. we had a long chat tonite about what is going on in his *belly* and he understands why we need to address a few things.. And here for once his fascination with all things military came in handy. The agents we'll be using to blast the bad critters are *the carpet bombs*, and then the soothing/boosting stuff + probiotics are *the foot soldiers*...)

Do send some positive thoughts and extra TLC over this way for Salamander, please. We're going to need it...

D@mn!!!!

Got Salamander's CDSA back this afternoon... not good, not good at all.... he continues to have MAJOR issues with dysbiotic bacteria, and Candida (yeast) is back full force too.. (sure explains that bloated belly ... and may explain some of the mood related issues too, as well as that extreme fatigue...).

I need some time to really read and understand Dr. Yasko's recommendations on what to do next...

D@mn... Definitely a set-back (and note to self: Salamander needs a CDSA every quarter, at a minimum. His gut is too fragile to go for MORE than a year without checking up on what's going on)

Update at 9.45 pm - I just checked my test record files; looks like the last time I ran a CDSA for Salamander was May of 2007!!!!! What the h#ll was I thinking not running CDSAs more frequently??? The only *excuse* I can come up with is that between May 07 and February 08 I was super focused on frequent amino acid and metabolic cycle testing...).

Two More Things..

Opinion question.. I've been toying with the idea of linking the blog up to a larger website. I have so many articles, presentations, book references related to autism, biochemistry, remedial therapies, supplements we've tried and why they didn't work for the boys, supplements that worked really well for the boys etc etc that are just sitting in a pile on my computers, on my desks, spilling out of binders, crumbled up in the trunk of my car.....I could incorporate all of those in the blog of course, but I am not that crazy about the sorting, organizing and archiving features of a blog. I think an actual website (with pages and all) would work better..
I have an opportunity to build my own website and run it for free for a month. Whaddayathink? Should I give it a whirl?

Secondly.. I had to be upstairs for a bit while my boys stayed downstairs. They were playing with their LEGOs, so I figured they'd be OK. Plus I told them where I was and to come find me if they needed help. I was upstairs for maybe 10 minutes or so when it got suspiciously quiet downstairs.. Waaaay too quiet..... So I snuck downstairs and found both my boys snuggled up on the couch reading a book together.. well, Salamander was reading it to Potatey, and Potatey was listening very intently....
Why did this give me this warm fuzzy feeling inside? For the past week or so, Salamander has not been able to tolerate Potatey within a 3 foot radius near him. The fact that they actually sat together all snuggled up tells me that, whatever may be going on with Salamander, we're through the worst of it again and that Salamander (the REAL Salamander) is coming back, and that we'll be OK...

OK off to play for real now...The backyard is calling us...

Playin' Today..

Not doing any paying work today during my boys' waking hours. School will start again in a few weeks, it's a glorious day today, so we'll be outside a lot just playing (going mini golfing is one of the items on the agenda, as is making pizza.. LOL)

To my delight I noticed a TON of movement on several loans on the lend4health site. One more loan got fully funded (Arthur), and several others got a lot closer. If you haven't checked the site out yet, please do.
And OK, I admit to a little bias, will you please take a look at these two brothers? Mom would like to get her boys' SNP panel done to get started on Dr. Yasko's protocol. I went through that exercise in the summer of 2006, and have never regretted it (my boys continue to be on Dr. Yasko's protocol; Yes, Salamander right now is having a rough time, but I don't see that as a *failure* of his program - something(s) has (have) shifted, and I need to figure out what; and Dr. Yasko's protocol has given me the tools to do just that). OK, getting off soapbox now... LOL

Catch ya all later (oh, some of you have asked me if the *getting lots of sleep* trend continued last nite - alas, it didn't. But as I am very much a *I take what I can get* girl, I am not going to mope too much over that. Today's another day, and tonite's another nite..)

Tuesday, August 19, 2008

Stop The Presses...

I. Slept. For. Nine (!!!!!!!). Hours. Straight.

Yes.
Nine.
Hours.

(THAT, my dears, has not happened in, oh hell, I can't remember how long.... And I had some really, really *good* dreams while I was sleeping too; and that has NOT happened to me in an even longer time..LOL)

Oh, and please pop over to Kim Stagliano's for an absolutely hideous contest...

Monday, August 18, 2008

So far, it's been a vomit and poop day out here (literally) - 4 *crapisodes*, to borrow a phrase from Kim S, total;
two nasty foamy yeast floaters by Potatey (the S. boullardi, in combo with Dr. Amy's mycology RNA are starting to do their thing) and two *meany greeny, you can use these to peel paint* stink bombs by Salamander (I suspect due to increase in cholacol, and consistent use of SAMe w/ trehalose to stabilize the SAMe).

Oh joy...


Learning about ABC News' coverage of the lend4health blog did make me feel a little better (even though I'm a bit disappointed that the article went down the *but these treatments are not proven, even dangerous in some cases* path.. As that is NOT what lend4health is about... it's about helping parents help their kids. PERIOD.)

Lots of Soul Prints

Here too. Lots of great movement on several loans. Awesome!!!!!

And Thanks...

Talking About Leaving

a Soul Print.... Wow.

Sunday, August 17, 2008

On Fear and Memories...

7:50 pm Update:
Earlier this afternoon I wrote: "So there you have it: Today I am going to spend in a conscious state of creating meaningful moments that live on. Memories matter.. a LOT"

I am absolutely delighted to report: MISSION ACCOMPLISHED!!!!


So yesterday was not so good....and what made the downs and ups harder to deal with is that I operated from a place of fear.. and I said it before "Fear is the Mind Killer*. I HAVE to get better at simply NOT going down that path. PERIOD. END OF STORY.

Right now, today is good. Salamander and Potatey went for a 2 mile bike ride this morning and they had a blast. I'm doing my usual Sunday cooking marathon and am making good progress (tomato ketchup - CHECK; steak - CHECK; ice cream (egg based) - IN PROGRESS; chicken, meatballs, burgers - NEXT IN LINE). It's a gorgeous day outside, so in a little bit we'll head out to the neighbor's pool for a splash fest. And whatever happens today, happens. And that's all there is to it. And at the end of today I am going to remember the good parts of this weekend. And I will try to forget about the bad parts (or at least not let the bad parts paralyze me)

On my coffee cup this morning, I found the following *pearl*:

The way we get to live forever is through memories stored in the hearts and souls of those whose lives we touch. That's our soul print. It's our comfort, our emotional nourishment at the end of the day and at the end of a life. How wonderful that they are called up at will and savored randomly. It seems to me we should spend our lives in a conscious state of creating these meaningful moments that live on. Memories matter. Leeza Gibbons.

Sawyrr's Loan

SAWYRR'S LOAN IS FULLY FUNDED. THANK YOU SO SO SO VERY MUCH

is down to the last $99!!! Thanks to all who have already pitched in.

And if you haven't yet had a chance to check out lend4health, and in specific Sawyrr's loan request, won't you pop over and take a look?

Wouldn't it be a nice surprise for Sawyrr's mom and dad if they could get the word on Monday that their loan has been funded in full???

[pretty, pretty, please...]


8/17/08 - 8.45 am:
Sawyrr's loan is $54 away from being funded; Fifty-four dollars!!!! ....Come on, we can DO this!!!!! And then we can send Sawyrr's parents on their way to see Dr. DeMio; not just for Sawyrr, but for his sister too..

#########
8/17(??)/08 - 12.15 am [sorry, can't remember exactly what day/date it is...]


Tori let me know tonite that Sawyrr's loan is $79 away from being funded!!!! Thank you all so much.
Whadayathink? Is there still a chance that Sawyrr's mom and dad will hear on Monday that the loan is funded in full? September (when Sawyrr & his sister with ADHD have their first appointment with Dr. DeMio) is around the corner... TIA!!!!

Ah sh#t, ya know what? I am in desperate need of some *feel good vibes*.. I'm gonna pitch in on Sawyrr & his sister a bit more myself...

Saturday, August 16, 2008

Bumpy.. Bumpy.. Bumpy..

And the day is only half done (sad, isn't it? To wish for a day to be over...as once a day is gone, you can never get it back).


Low point so far? Holding Salamander in my arms, while he's crying so hard his whole body is vibrating and hearing him say over and over and over again; "I'm so sad, mommy, I'm so tired. I'm so sad, mommy, I'm so tired." And then making the transition to very very angry in less than 3 seconds and screaming at me: "Well, you just don't care. I can't sleep at night, but you are not loosing any sleep at all." Oh child of mine, if only you knew how much sleep I've lost over the past 3 to 4 weeks worrying about you, and how many hours I've been up in the nite reading and re-reading all my biomed/parenting strategies/anger management/raising an explosive child books..


Highlight so far? Salamander popping over to a yard sale two houses down (not even an hour after the above had happened) and coming back with a big grin on his face and a beautiful vase in his arms, and saying to me: "I wanted to buy this for you mommy, but when I told the people they gave it to me for free as they thought that was so sweet. I love you" Oh beautiful boy, what an incredibly sweet thing to do indeed .... and what made it even more special is that you did this on your own, without anybody prompting you.


A study in contrasts this man child of mine is.. And you just never know which side is going to pop out when....

Potatey is struggling .. too many upheavals, too many undercurrents, too many *unpredictable* reactions from his big bro to seemingly *minor* things... So Potatey is whiney, clingy and weepy (heck, -I- can barely hold it together, so how can I expect a little 5 year old to stay grounded?).

My heart aches.. for both my boys....

7:30 pm - Salamander IS doing better, after several hours of LOTS AND LOTS of structured physical activity involving all the large muscle groups (oh, the wonders of endorphins). Note to self: when Salamander gets *low* like he did today, GET HIM MOVING!!! [and I'm about to keel over.. but seeing him smile and seeing a twinkle in his eyes makes it all worth it].

8:55 pm - Salamander is complaining of his muscles hurting. Not completely surprising. I hope he's not going to be too sore/tired tomorrow.. It's a fine line - when he's so down, he needs the exercise to get that endorphin boost; but at the same time we need to be careful that he doesn't exercise too strenously as we have the mitochondrial issues to take into consideration (especially as he's been so tired, floppy, no muscle tone as of late..)

Friday, August 15, 2008

Sometimes You're Up..

8/17/08 - the comment line to Barbie's piece just keeps growing. Mostly by folks who can relate to what she wrote. And then again, there were of course several *autism isn't like that* comments too.. Well, here's what I got to say about that: If your reality of autism is not like what Barbie described and has never been like Barbie described, I am thrilled for you, and for your child(ren). And I hope you never ever have to experience what some of us go through. But that sure as heck does NOT give you the right to downplay (or sugarcoat) our experiences, or to try to take the *gut punch wake-up call* out of describing our experiences by immediately launching into a song and dance about how happy some people are that they have a spectrum disorder....

Once Salamander can tell me he's happy dealing with all the b... s... he deals with on his not-so-good days, then fine, I'll back off and my job as a parent is done. But until such time? Just get the heck out of my way and let me do what I need to do....


and sometimes you're down.. But oh boy, going down with a child on the spectrum can lead you to the deepest darkest bowels of hell.

Read this piece, written by a fellow *sister in the 'hood*.

I am sure there are going to be many out there who will think that she should not have written what she did, that she should have kept this private, that she should have kept the *everything is just fine* mask firmly in place.

I'm so glad she didn't.

Barbie, if you happen to pop in here: you are one gutsy lady with a set of big brass ones. And it is so so so d#mn obvious from what you wrote that you love your Jimmy dearly and that you'll travel BACK to the bowels of hell 50 more times if that is what it takes to give Jimmy a shot at a decent life. You are an inspiration, and you've given ME the courage to keep writing about the not-so-good and the downright (f)ugly stuff that can be going on here. Keep the faith, sister. Keep the faith.

[and yes, I am crying as I'm writing this... You see, Barbie's story could have been mine. Has been mine. Just change a locale, change the mode of transportation, and a few other *minor* details..]

ADDED at 11:15 am:
And then of course there are always at least a few who will try to downplay what some of us experience with a sugary *but not all kids with autism go through stuff like this* coating. Yup, that's right. Not ALL do. But many DO.

I fully admit that I have a very snarky tongue today, and it probaby shows in my comments on AoA. So bite me!!

Oh, and the Grand Universe can be a really twisted Bi(o)tch. Most of the time I pay no attention what so ever to horoscopes. But lookie see:
"You may find that your emotions are a bit erratic today. It could be that your mood comes and goes in powerful waves of energy. [..]. Let your heart speak its truth at all times."
Yup, indeed and guess I did that already...

And Then..

A big a$$ T-storm started rolling through here... THAT certainly explains a few things.... Think that our kids being sensitive to weather systems is all bogus? Come life in my house for a while.. And then tonite is also a FULL MOON.....

AAAWOOOOOOOH!!!!!!

So I Just..

spent about 5 to 10 minutes on the phone with a lady reporter who claimed to be a health writer for ABC News wanting to do a piece on the lend4health blog (she claimed that Tori had passed my name on). I did not have time to verify..

God, I hope I didn't say anything that'll discredit the lend4health blog or Tori or all the hard work that has gone into (and is going into) it. It's one thing to make an a$$ out of myself (and I have loads of experience in doing that), it's another thing to drag somebody else down with me...

If and when the piece comes out, I'll make sure I review it carefully and whether or not what I said got fairly represented...(and if not, well, then it'll be a lesson learned.. see, despite my big mouth, snarky tongue and 'tude, at heart I am still very much a *trusting fool* that believes in the good of mankind..)

Thursday, August 14, 2008

Aaaggggghhhhhh...

I blogged about the *wonderful lifestyle* associated with running your own gig before..

Let's just say that today it all bit me in the a$$ once again. The two primary projects I've been working on hit a bit of a slowdown earlier this week, so I have taken on two new, smaller, projects to *fill the gaps* so to speak. And as the boys are both going back to school on September 3rd, I figured the *slow down* would allow me to keep the boys out of school/camp next week to just hang out and do fun day trips. And that I could use any *spare time* to get all the medical paperwork for the school nurses squared away, as well as schedule *transition* visits to the boys' respective schools.

Well, THAT was the plan this morning. Actually, it still IS the plan.

But the two projecs that had slowed down are back on.. full speed... And the two smaller projects? Not so small now that I am getting into the details (yes, I got *suck[er]ed* in..).

Good news? Plenty of work to get me through remainder of August and well into September.
Not so good news? As I do NOT want to break an already made promise to the boys of being *home based* next week, I'll be putting in a lot of very early and very late hours....(and yes, realistically, I'll have to beg and plead with a certain person to take the boys for a day here and there.. as my wonderful *usual* back-up troops need to get ready for the *return to school* themselves...)

Oh well, in the scheme of things, there are much worse problems to have than drowning in paying work....(and along that line, I am getting quite worried about Salamander's continued extreme tiredness and fatigue.. I'm going to have to find the money somehow to do a combo UAA/MAP test; I need to *see* exactly what is going on metabolically....)

Real quick, as it's a bit of a zoo out here this morning....(more on that when I am coherent again).
Happy to report that little Sawyrr's loan is getting closer and closer to being funded (down to the last $139!! 8/15/08 - down to the last $99!!!!).

Also a new loan request went up for two little brothers; the loan request is to be able to start a treatment program that is very near and dear to my heart - Dr. Yasko's program. At the time I did the boys' genomics profile, the test was quite a bit more expensive than it is now, but I have never ever regretted the expenditure. For my two it truly has been the roadmap to better health and big jumps in quality of life...

Wednesday, August 13, 2008

Couple of *Lightbulb* Moments ...

I realized last nite that I continue to give Salamander his supplements based on his weight as it was BEFORE the rapid weight gain started back in September 07. For most of the supplements that probably isn't an issue, but I realize that when it comes to B12 dosage as well as dosage for several of the supplements he is taking to help with the neurotransmitter imbalances I am probably not giving him enough. So I'm going to have to *tweak* (and will do so one thing at a time).

Two changes that I've already made are (will keep you posted on how these changes are working out):
  • Increase the daily dosage of cod liver oil from 1/2 tsp to 1 tsp (for the longest time, Salamander had serious fatty acid digestion issues and could only tolerate CLO or MCT - and exactly because of the fatty acid digestion issues, could only tolerate these in small amounts).
  • Added a very tiny teeny pinch of 5-HTP to his morning supplement mix.

And as we're on the topic of MCT (medium chain triglycerides), I was reading a bit on the UMDF parent information webpage and I found this blurb:

"In some patients (see #4a and #4b above) [with OXPHOS disorders], adding fat in the form of medium chain triglycerides (MCT), may be helpful. Medium chain triglycerides of 8 to 10 carbons long are easier to metabolize (turn into energy) than the longer chain triglycerides (those with 12-18 carbons) because they do not require carnitine to be transported into the mitochondria. MCT Oil@ is mainly made of 8 and 10 carbon triglycerides and this type of oil does not occur in nature, but is made from coconut oil. MCT Oil@ is made by the baby formula company Mead-Johnson. It comes in quart bottles, available by prescription and runs about $70 a quart. It can be added like oil over pasta and rice. You can cook with it, but this is a light oil and burns easily. The special rules are explained in a recipe book that you can request from the pharmacist. Depending on the situation, a patient may benefit from a few teaspoons to a few tablespoons a day. There are oils sold in health food stores called "MCT Oil" or "medium chain triglyceride oil". These are much less expensive ($25 per quart), but make sure there is a certified analysis on the label, stating that the vast majority of the oil is C-8 and C-1 0 (and not C-12 or higher)."

I've had both my boys on MCT Oil for years, as the particular brand/blend the boys are on is also a great source of caprylic acid, which is a powerful agent in the fight against gut dysbiosis. I had ran out a few months back. I did reorder, and have had a new bottle on my supplement shelf for a while, but hadn't restarted. I had so many other supplements to get into the rotation, MCT Oil just wasn't a priority.

Needless to say, MCT Oil is *back in* for both boys as of yesterday morning. Will keep you posted on that as well.

Increasing B12 will take a bit of planning. Especially Salamander is incredibly B12 deficient, and whenever I increase B12 (in any form, shape or administration route; expect for METHYLB12) I see benefits for a few days. And then *the bottom drops out*, as the increase in B12 gives a few metabolic cycles an extra push, which then results in extra detox. So slow and steady is the preferred approach there..

Tuesday, August 12, 2008

Four Things

that brightened my day.

Reading about Jeanne's Charlie having a beautiful start to 1st grade (check out her stories on CharlieinWonderland; there's a linky thingy in the rightside column of my blog).

Getting a quick note from Tori (Lend4Health) that little Summer's loan got fully funded.

Thank you, thank you, thank you.

UPDATE ON 8/13/08
(hope to have time to put up a more substantial post later.. Over the past 24 hours or so I've found myself thinking a lot about *transitions*, in all shapes, forms and sizes... So many transitions are happening here right now.. some that make me feel good, some that make me feel sad, and some that completely and utterly scare the sh#t out of me...)

Realizing that Salamander since end of May 08 has gained a full shoe size and has grown a full inch. He also gained a few more pounds, but the overall weight gain he has experienced since September 07 has slowed down a bit and the weight is redistributing/turning into SOLID MUSCLE, especially in his shoulders, upper chest and upper arms.

Hearing Salamander's explosive belly laugh this morning when he was playing frisbee with Potatey in the backyard. God, I had missed that belly laugh for the past week or so...


There has been some additional nice movement on the lend4health blog (keep it up!!!), and an interesting quote was posted. I sure hope that soon organizations like TACA will do more than 'watching to see if this works.' Not picking on anybody in particular, but really, where would all of our collective kids be if WE had taken the 'watching to see if this works' approach???

Exactly....

From Lend4Health:
"Quote of the Day!
"Everybody's watching to see if this works. We want [Lend4Health] to be successful because it's such a good idea. Money should not be a barrier to good medical care."- Lisa Ackerman, Founder of
TACA, as quoted in the Orange County Register
*note: TACA is not affiliated with Lend4Health"

Bipolar Tendencies SUCK!!!!

[for full disclosure: Salamander does not have an official Bipolar diagnosis, as his incredible mood swings can be explained within the frame work of his other medical and DSM-IV diagnoses. The term Bipolar Tendencies however is appropriate to describe the intensity and unpredictability of his mood swings when they strike. They don't strike as often as they used to; in fact, things have been *relatively* calm since about mid February. But we're entering another cycle and with hormones now entering the playing field, I think we'll be in *strap on the good ole' flak jacket and take cover* for a little while. And we have a full moon at the end of this week I believe.. ]

It's been one heck of a *bipolar* rollercoaster morning... Oy.... the slightest little thing set Salamander off. He is finally starting to calm down, but it's been (in)tense here since about 7.45 am after he got up *on the wrong side of the bed*...

I had to decide to send Potatey to his school/camp for the day, as there was just no way I would be able to focus on calming Salamander down otherwise. I feel bad about having to basically send Potatey away, but it was for the best. At least he's now in a safe, supportive and fun environment and, hopefully, by the time he gets home again things will have evened out a bit and I will be able to focus on him (the hurt look on Potatey's face will stay with me for a while though).

Hard to describe what triggered the 'blow ups' of this morning. As usual, it was a stack up of little things. Salamander has been having a really tough time for the past 24 hours or so regulating his moods and emotions, and once that frontal lobe decides to take a leave of absence and hands the reigns to the subcortex.. foggettabout the *take a deep breath and count to 4* approach.

I'm tired.. and the day has barely started.. Salamander is taking a soak in a warm bath right now, so hopefully that'll help him even out a bit.

Having an autism spectrum disorder is no picnic. I get that, especially for kids that are much more severely affected in that department than Salamander is. But man, add his medical issues (especially the meta/mito piece) and the bipolar crap to it, and I don't care HOW *high functioning* Salamander is considered to be, the combination SUCKS!!!

Monday, August 11, 2008

United Mitochondrial Disease Foundation..

Added UMDF to my links...

An excerpt from the FAQ section below. This is EXACTLY what put me on the track of meta/mito dysfunction for Salamander a long, long time ago (the CHECK comment indicates that Salamander displayed (and on occasion still displays) the symptom):

"What symptoms could an undiagnosed individual [with mitochondrial disease] exhibit?
The child or adult may have seizures,
severe vomiting, CHECK
failure to thrive, CHECK
heat/cold intolerance, CHECK
poor muscle tone, CHECK
delayed achievement of milestones, CHECK
sever diarrhea/constipation, CHECK
feeding problems, CHECK
unable to fight typical childhood infections or repeated infections and fevers without a known origin. CHECK

A "red flag" for mitochondrial disease is when a child or adult has more than 3 organ systems with problems or when a "typical" disease exhibits atypical qualities."

Despite the above, no *mainstream* doc that I took Salamander to was even willing to consider the possibility for meta/mito disease...


Oh, and anybody else notice this, to me very unnerving, parallel?
"Every 20 minutes a child is diagnosed with autism"
"Every 30 minutes a child is born who will develop a mitochondrial disease by age of 10"
Too much of a coincidence for me....

This May Have HUGE Implications..

Breaking news on incidence of genetic markers for susceptibility to mitochondrial disease.

Excerpt:

'This ground breaking discovery confirms what researchers and experts have believed for some time - mitochondrial disease is not rare,' said Charles A. Mohan, Jr., Executive Director and CEO of UMDF. 'We now know that 1 in 200 people carry the mutation for this horrible, debilitating disease. This discovery underscores the need for additional research funding to help better diagnose and treat affected individuals and to learn more about how mitochondrial dysfunction is connected to other diseases.'


Don't have time to add my own thoughts/commentary right now.. am sure other bloggers will.. stay tuned. Age of Autism has already picked up the press release.. Im sure it'll trigger lots of comments.

Have a few moments to comment: While TG neither of my boys has full blown meta/mito disease, they have enough meta/mito dysfunction going on that things can get quite *interesting* when the boys have a flare. So I feel vindicated by the "We now know that 1 in 200 people carry the mutation for this horrible, debilitating disease" comment. Yes indeed, when the dysfunction issues rear their ugly heads out here, it IS *horrible* and *debilitating*....(and it's scary as hell to watch it happen and to know that there is very little I can do to stop things from happening.. what saves me from going crazy during the flares is that I understand what is happening and that I, by now, can do a lot to *take the edge* off)

Can't Help It..

PUTTING THIS ONE BACK ON TOP.

It's gonna be a crazy week out here. Salamander's Summer Camp has ended (those six weeks just flew by.. which is GOOD), but I have a ton of work commitments for this week (so I'll be working early, late and whenever else I can find the time). So that being said, I don't know how much time I'll have for blogging this week. So I'd rather have something for you all to look at and think about.

Oh, quick update on how the boyos are doing. Salamander is ever so slowly crawling back out of the pitt - he's doing a little better every day. I started S. boullardi for Potatey this weekend (to address his yeast problem), and so far, so good.


I check the lend4health blog at least once a day...and I can't help but wishing that I had unlimited funds to support these kids, not just for what their families are asking for in their current loans, but to help them all the way.

But alas.. unlimited funding I do not have.. It's hard enough keeping things going with my own two and the few others that I help out whenever I can.

That being said, for whatever reason I am particular drawn into the stories of these two kids:

Sawyrr and Summer.

Not saying that the other kids are any less deserving of their loans, they do and they are. It's just that these two kids are so close to having their loans fully funded...

Especially looking at Sawyrr's pictures was like getting kicked in the stomach by a team of draft horses all over again. See, I've been there. I have seen exactly THAT happen to Salamander. It took longer for Salamander for it to become apparent that he was getting lost, but it did happen. I actually had to put Salamander's 1 year old, 2 year old and even his 3 year old pics away (although you can *tell* something isn't right in his 3 year old pics), as it just become too painful to look at those pics and to see what was there and to know that by the time Salamander turned 4 it was gone. That sparkle, that joy for life, that 'let's jump in and get messy', that 'I'm ready to bite a chunk out of life's ass' spirit. At least in Salamander's case that *is* coming back, TG, but it's been a long and hard road.

And Sawyrr is so much younger than Salamander was when I got smart and finally got him the help he needed. I can't help but think how much Sawyrr's parents will be able to help him, starting at such a young age. And then of course the other part that tugs at my heart strings is that Sawyrr has a sister with ADHD that the parents want to help too. And I KNOW how hard it is to figure out HOW in the world you're going to be able to do all of this with TWO kids (then again, I know several people who are treating more than two.. my hat off to all of you..)

I don't know why Summer resonates with me so much. Maybe because she's a little girl, and she reminds me of another little girl that is now taking up a special place in my heart. And I know that that little girl was completely non-verbal too when her mom and dad started on this road. And now she's an incredible little chatter box (this little girl is a couple of weeks older than my Potatey).

Not saying it always goes that way. I also know several kiddos that, despite their moms' monumental efforts, continue to have little speech (and there to me lies a HUGE tragedy; so why is it that some interventions do so much for some kids, but little to nothing for others? Personally, I think Dr. Amy's genomics testing can help enormously in answering some of those questions - it sure as heck helped explain for ME why my guys did so poorly on the DAN! recommended vitamin and mineral mixtures and why METHYLB12 (they do awesome with HYDROXYB12) and sulphur based chelation would have been a disaster. It's just that so much more research is needed...

Anyway, I digress. Go check these kids' stories out. And please contribute if and what you can. And remember, these are LOANS. Of course nobody can guarantee that the loans will actually get repaid. And that's a risk each of us need to assess whether you're comfortable taking it. But that being said, wouldn't you loan a co-worker or a friend $5 for lunch and not worry too much whether you're going to get that money back? And if 20 people contribute 5 bucks, well, that's $100 closer to funding a loan. Things add up.

So think about it, please. And then follow your heart....

Sunday, August 10, 2008

Mr. and Mrs. Smith..

Saw the movie last nite. And I laughed my a$$ off.

Best scenes by far?

The *cat and mouse* dinner scene after John and Jane discover that each has been contracted to botch up the other's Black Op (especially the constant swifting between who is cat and who is mouse is a delight to watch).

And the *tango scene* where John asks Jane "Don't you believe in Happy Endings?" to which Jane answers (and I'm paraphrasing a bit): "Happy Endings are stories that simply haven't finished yet."

Amen sista!

How many Fairy Tales do YOU know that talk about what happens to Happily Ever After once Prince Charming and Cinderella return from their honeymoon and Prince Charming returns to his real *piglet* self and starts leaving his dirty socks and dirty underwear all over the place, no longer puts up the toilet seat when he pees, and seriously believes that throwing the dirty dishes in the general direction of the sink is *doing more than his share as after all he *owns* Cinderella now lock, stock and barrel and as all SHE brought into the marriage are her house keeping skills..".

Or Fairy Tales about what happens to Happily Ever After once Cinderella has the audacity to give birth to not just one, but two little princelings that *have issues*? After all, THOSE ISSUES really must have come from Cinderella's side of the family as *those things do NOT happen in Prince Charming's family*.

Cynical? Maybe.

Reality? More likely.

My advise to all the young ladies out there who think they've found their Prince Charming: Put Prince Charming to the test and ask him to help you provide a full weekend of care for a family member with special needs (as almost every family these days has at least one, if not more, extended family members with special needs). Preferably involving three NIGHTS of care too. And no breaks. And if Prince Charming doesn't turn into a toad during that exercise (no offense to the toads), then he may be a keeper.

But if at any time you get that *funny feeling* that maybe, just maybe Prince Charming isn't up for the task, then let him go, baby, let him go (and don't waste another breath or tear on him). Or run like hell yourself because if you don't, there WILL be a point where you find yourself looking at Prince-Not-So-Charming's backside as he's hightailing it for the hills leaving you on your own in caring for and dealing with the heartbreak involved in raising your special princelings....

What she said, and what she said, but definitely what she said too.
Three very different voices... and finding myself in all...

Saturday, August 09, 2008

Train wreck..

Today I got to be a *fly on the wall* and watch what my boys' life would turn into if I could not do all that I normally do, if I could not be all that I normally am (as I was quite ill today and completely *out of it*).

Two words.... Train wreck.....

And I am sad, I am frustrated, I would even be angry if I wasn't so damn tired, and I'm still feeling like crap...

But I better be OK (enough) again tomorrow.

Let me rephrase that.

I HAVE to be OK (enough) again tomorrow....

Friday, August 08, 2008

Mornin!!

About two hours of sleep (give or take). Another piece of the nitemare project done (not completely done yet, unfortunately, and as my client is tied up all day the chances of finishing this before the weekend are now slim). Pizza for Salamander in the oven.

Once the pizza is done, I need to pack up my sh#t, hit the ATM and pay one of my incredibly awesome care providers, and then get to another client to work on two projects there.

How can I be so cheerful you ask? Three reasons:

I got a CDSA back for Potatey (yup, one of the many *healthy harvest* tests...LOL), and things look MUCH much better than a year ago. Dysbiotic bacterial flora under control, good growth of beneficial flora, much better digestive parameters, and, DRUMROLL, sigA is now on the low end of normal (after having been non-existent for years). Potatey now does have a bit of a yeast problem, so I'll need to tackle that next (and truth be told, I have been a bit lax in the yeast fighter department for him.. we had sooo many other *gut emergencies* to deal with first).

While the nitemare project is not yet done, I did get a step closer. So I just need to keep plodding along.. and not having the expectation anymore that it has to get finished today DID take some pressure off.

That other client I am going to be at today? They have a nice big check waiting for me. And getting paid is GOOD.

Latah...

Thursday, August 07, 2008

Check THIS Out!!!

August 8th, 12.10 am update:
And there has been quite a bit of movement on several loans tonite, this little girl's family has now gotten quite a bit closer to being able to pay for her next round of testing. KEEP IT UP!!!! And my thanks, from the bottom of my heart, to all who went over to the lend4health blog tonite and contributed.


Don't have time to get into the details right now, I am on a work assignment that I have to finish today (as in preferably BEFORE 11:59.59 pm on August 7 2008), and I have even made alternate care arrangements for my kiddos to be able to continue to plod along on this for as long as it's gonna take (as it's NOT an easy assignment).

But please, do go check this blog out. And while you are there, contribute a few bucks (and I literally mean a few bucks)...


PS. I am thrilled to report that at least one loan was funded today (Marcellus' mom, if you ever end up here, know that I'll be thinking of you).

And then Jeanne goes off and writes this. I'll be honest, I'm still not sure whether to blow her a kiss and take my bow, or whether to slap her (it's one thing for me to put ME in the spot light, preferably warts and all. It's entirely another thing for another person to put me in the spot light, painting such a glowing portrait of a person that I know is deeply flawed .. )

Fear Is The Mind-killer...

After I wrote this yesterday,

"Don't know WHAT to think.. And that may be part of my problem.. I need to stop (over?)thinking and wondering IF the lead paint exposure will trigger anything. Instead I need to start trusting my gut again; along the line of *He's in detox. Deal with that. Make him as comfortable as you can get him. Keep testing. Stop playing Doom's Day and What If.*"

I felt a lot calmer, more able to *go with the flow and do what needs doing*. And the remainder of the afternoon and early evening went smoothly.

In the midst of dinner rush though I felt my anxiety and frustration levels rise again. And then out of nowhere this pops up in my head:

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

Frank Herbert, Dune (1965)

I used to read the Dune books a lot; not necessarily in one big go, but a chapter here and a chapter there. I have not opened a Dune book in YEARS. In fact, it's been a long time since I've read anything that does not have to do with stuff I need to read for work (I read a LOT of medical literature on a variety of topics), or stuff pertaining to meta/mito disorders, special needs kids, etc. etc.

Time to change that. Time to focus on regaining solid ground under my feet. Time to *let go* of a few things.

And whenever I start to slip back into anxiety/frustration/anger mode (which are all different words for FEAR), I will tell myself:

I must not fear.
Fear is the Mind-killer.
Fear is the little-death that brings total obliteration
I will face my fear ....