If You Ever Wondered...

Why so many kids with *autism* toe walk, hang with their bellies/stomachs over furniture, wake up in the middle of the nite screaming, refuse to eat, vomit ala Linda Blair, have constant diarrhea, do not gain weight, or have pot bellies that would do a starvation victim proud, just look at these endo pics that Jeanne just posted for her little guy.

I am sick to my stomach... poor, poor Charlie (and trust me, these pics are a fair representation of how MY kids' insides looked too ..).

And of course when you take a child that has the above symptoms + autism to a *regular GI doc*, all you will get back is: "Oh, it's all behavioral. After all he/she has autism, so what do you expect. This is just their way of trying to control you..." (and you'll get something very similar if you take your child w/ autism and seizures to a neurologist...)

Yeah, right, sure, whatever...

TG that so many of us take matters in our own hand (at great cost) and tell docs like the examples above to *Go "F" themselves". (I fired one of my pedi's on the spot when she started, all saccharine like and quite condescendingly, telling me about the symptoms of Munchhausen by Proxy..)

Yes, I am really bitter when it comes to the total lack of attention paid by mainstream medicine. Charlie is 6. Accordingly to Jeanne, he's had his GI symptoms since he was 2. That's 4 years of a child in pain. Salamander was well over 6 years of age before I realized that the few foods he was willing to eat were poisoning him (and caused him a great deal of pain and distress). Salamander has had GI issues since he was 6 weeks old. That's 6 years of a child in pain.

And there are so many many more kids out there in the same boat.

This is criminal neglect (on the part of mainstream practitioners) at its worst...

Sorry...

You're not going to get much of substance from me today... Too much going on, too tired, too frustrated, too worried.

Salamander is NOT doing good.. And I really won't have any data for another 2 to 3 weeks or so as to what may be going on..


Also, I think the Great Spirit in the Sky is making the yes/no decision regarding St. Lucia for me.. Potatey tried to climb out of my sunroof (another story for another day - the car was NOT moving) and broke it. So it won't close. Which with all the T-storm predictions is NOT good. So I need to get the sun roof fixed ASAP. Also, the A/C in my car went belly up. With two kids that easily overheat, I cannot be without an A/C in my car. So the A/C needs to get fixed too...


UGH.....

Random Collection...

So I am about to ship off Salamander's first UTM post lead paint chips/dust disaster... And then the waiting will begin. I am worried, more worried than I have been in a long long time. I can handle detox, detox is a necessary process towards healing. But having to face that Salamander may potentially go through (or have to go through) additional detox because of another person's carelessness and stupidity, now that's another matter altogether.

Mood and behavior wise, Salamander DID better yesterday. The anger, agitation and edginess are right below the surface though.. And the poor babe is just so, so, so VERY VERY tired (very low energy, low muscle tone, coordination is waaaay off -tripping over his own feet, walking into walls, processing delays in executing multi step tasks, spaced out). It's been fairly hot out here again too, so I'm sure that's NOT helping.

Not much I can do about any of the above, beyond what I typically do. And for the rest, I just have to wait for test results to come back.

####
On a much more *upbeat* note... Salamander and I went shopping yesterday for a new play set. I had promised the boys a while back that we would get a new one over the summer (as the old one is approaching *condemned property* status). While, considering that I will probably have to significantly accelerate some paint resealing/encasing work in the boys' bedrooms that I had planned for NEXT summer, it would probably have been better to postpone the play set purchase and keep the money in reserve. I just could not disappoint my boys like that (and it's not fair to punish them for what happened).

Salamander did AWESOME. We worked HARD with the sales person for an hour and 15 minutes; deciding first on the type of play structure (we decided upon a *tree house* like set-up, as the boys want to climb, climb, climb and have a place to have their *secret club* meetings), then on additional features (large climbing wall, slide, two swings), and then materials and color. Salamander did SUCH a good job listening.. and understanding that trade-offs were necessary and working through his disappointment on certain trade-offs. I think the sales person was absolutely blown away with how mature Salamander acted (after getting over the initial "Oh, you are making this child an active part of the process?" Well hell, YES, of course... ).

We ended up with a really *cool* structure that I think Potatey will take to as well (no, I hadn't brought him.. I can do a lot, but making decisions, negotiating with a sales person, while at the same time managing my very opiniated brood definitely exceeds my capabilities..). I will add a sketch of what things will look like as soon as I have a moment (and yes, I DID spent more money than I will ever publicly admit to - but heck, my boys are worth it .. There are so so many other things that are considered part of the *American way of life* that we do not or cannot do...).

Salamander was absolutely POOPED by the time we were done. And considering how hard he worked, that is completely understandable. I am just so friggin' PROUD of him.

Materials have been ordered, and pending any crazy *oopsies*, the whole thing should be *up* by the end of August (yes, I AM having it installed, and I AM having the old clunker removed - I can do a lot on my own, but certain things are just NOT worth getting all stingy over.. )

###
Both boys did an awesome job last night in helping me take care of a dishwasher *problem*. Salamander figured out what tools I needed to get the job done, and then Potatey went off and found them!!!! And the whole time, while I am upside down in nasty, smelly water in a pretty *tight* space, the two of them stayed right with me, encouraging me every step of the way. They are such GOOD kids (and I hope that their niceness and caring continues beyond puberty, and especially beyond the *well, I've gotten in the girl's pants, so now I don't have to make an effort anymore to be nice*.. Yes, yes, this too involves teaching.. And trust me, the boyos are getting and will continue to get plenty of the female perspective on things.. LOL).

###
I may have an opportunity to spend four days in St. Lucia (as in Caribbean) in November. And I am so, so, so tempted - my dreamer side is jumping up and down going: "Yes, yes, take it. Pack your bags and go, go, go". My pragmatic side goes: "No way, you can't do this. You can't leave the boys. And think about the expense! Think about the food and supplements you could buy for the money you'd be spending during those 4 days!"
I truly don't know which side of me will win (opinions are welcome!!!).
I need to decide by next week Friday....

Send Some Positive Thoughts and Energy..

Jeanne posted an update... and pictures too ....

Best of luck today to the Charlie man. I'll be thinking of him.
May today's procedures provide (some? of) the answers Jeanne is looking for.

#######
JEANNE, I BUMPED THIS ONE UP AGAIN. SEE MY COMMENT TO YOUR COMMENT...LOL

to my blogger friend Jeanne and her little guy Charlie as they have completed their trek to Texas to see Dr. K (and a certain other doctor) at the Thoughtful House in Texas.

I'll be thinking of them..

Salamander - UTM Update

As mentioned here, I took a UTM for Salamander on July 16. Got the results today:

This was a sample with somewhat elevated creatinine (81 mg/dL), so he was definitely in viral detox.

Aluminum excretion was up with a factor of about 3 versus the prior UTM (with highest absolute aluminum excretion since December 07)
Similarly, mercury excretion was up with a factor of about 3 versus the prior UTM (with the highest absolute mercury excretion since December 07 as well).
And then there was the *usual* arsenic, cadmium, lead, nickel and thallium excretion.

Salamander is DEFINITELY in detox.

I sent in another UTM on July 23. I should have results for that one sometime next week.

In addition, I'll be running weekly UTMs for a while .. Unfortunately, Salamander was put in a position this weekend where he was exposed to lead paint chips and dust. Salamander IS lead toxic already, so needless to say, I am really, really B... S... about this whole exposure situation.
I'll be keeping a very close eye on his lead output (as well as on his overall behavior presentation). Yesterday wasn't such a good day for him.. and today was rough too...

"Bruised and Battered.."

I am.. Physically and mentally.
[in the metaphoric sense]

The B.. S.. (NOT of the boys' making, I want to make THAT crystal clear) that I've had to deal with since last night, combined with the shenanigans of Friday afternoon, have taken at least 5 years of my life (and will be adding more grey hairs then I care to admit...)

I am tired of the drama... so tired... My life, when a certain person decides to make an appearance, resembles an ultra melodramatic Soap Opera.

X 1,000.


It's like this:

[freely borrowed from Horton Hatches The Egg by Dr. Seuss]

"There rang out the noisiest ear-splitting squeaks

From the egg that she'd sat on for five hundred and twenty plus weeks!

A thumping! A bumping! A wild alive scratching!

"My egg!" shouted *Horton*. "My EGG! WHY, IT'S HATCHING!"

"But it's MINE!" screamed *the bird*, when he heard the egg crack.

(The work was all done. NOW he wanted it back.)

"It's MY egg!" he sputtered. "You stole it from me!

Get off of my nest and get out of my tree!"

Problem is, the work is FAR from done. The REAL work is just beginning....

And whenever *the bird* is confronted with a situation that drives that point home, "Mayzie* realizes:

"It's work! How I hate it!

I'd much rather play!

I'll take a vacation, fly off for a rest

And back to *Palm Beach* goes *Mayzie*,
leaving it up to *Horton* to clean up the mess, as after all:

"I meant what I said and I said what I meant.....

*Horton's* gonna stick with her kids and ride this roller coaster ride where ever it may take us

ONE HUNDRED PER CENT!!!!"

And Then..

Potatey threw a baseball through a window...

And I ended up with a 1+ inch jagged cut ,cleaning up the broken glass.

And Salamander has been having a really, really rough time.. which may or may not be related to the B.. S.. that I discovered last nite...

NEVER a dull moment out here....

Boys had an AWESOME time yesterday afternoon (which means I did too). They get along fabulously with my friend's two daughters (who are close in age to my guys). And yes, I DID get sunburned.. LOL

Unfortunately, last nite (and I am only just resurfacing from the aftermath) yet another incident occurred that fits squarely within the "Swimming Against The Tide" category. Can't go into the details. All I can say is:

and

My Plan For Today..

is to spent the remainder of the day in my swimsuit (and to probably get incredibly sunburnt.. LOL.. my boys call me 'lobster girl', that should tell you something about my ability to get a suntan)

Boys and I will be visiting a friend and his family this afternoon; we'll be *hanging out* at the pool....(gosh, that sounds like such an incredibly *normal* way to spend a summer afternoon....)

Swimming Against The Tide..

So there were three situations over the course of this past week where my faith in huMANkind was restored a bit. And these situation involved people with whom I really only have a fairly casual relationship (and that I should probably change..). And these people, who have no real tie to either me or my boys, showed understanding, empathy, support, and even quite a bit of care. These people *got it*.

But then the one person who DOES have a tie to the boys and who should *get it* blows my little bit of regained faith right back to *Kingdom Come*. He,so does NOT *get it*. And never will....
And because of that, he makes it infinitely harder for me to be a proper parent to my boys (as I'm too d#mn busy putting out fires, and straightening out mucked up situations).

Let me just say that, while I firmly believe kids need TWO parents, I can completely understand why several of my fellow mommy warriors requested and got sole or primary custody....

A Really Neat Young Lady

A very dear friend pointed me to a blog that's kept by an 11 year old young lady who follows the SCD diet.

I copied a little bit from her intro on her blog, and I am adding her blog to my blog roll. Go check her out will ya?

From Ann Bailey Kerr's blog:

Hello, I am Ann Bailey Kerr. I'm eleven years old. I'm on the fifth stage of the Specific Carbohydrate Diet.

[snip]

Let me tell you my vicious cycle. My journey began when I was one and recieved the MMR vaccine, little did we know it would change my life. As I got older I grew sick all the time, bladder infections, dark circles under my eyes, bed wetting, rashes on my cheeks and arms, weak muscles, joint pain and yes the big one diarrhea and gut pain. My pediadrician kept telling my mom that I would out grow it, there was nothing wrong. By age seven I was a couch potato. I had no energy, my joints and muscles ached, my gut hurt, I had diarrhea five to ten times a day. At this point my mom was crazy out of her mind trying to find help for me.

[snip]

Then a friend from church that had a son with many of the same symptoms had found a DAN Doctor (Defeat Autism Now) with great results. It took eight months to get an appointment, but finally we got some answers, with much blood, stool and urine testing.

[snip]

We had to heal the gut, in February of 2008 my DAN Doctor recommended the Specific Carbohydrate diet introduced by Elaine Gottschall who wrote "Breaking The Vicious Cycle," a must read before starting this diet. I am now five months into the diet, taking cod liver oil, zinc, magnesium, multivitamin, and yogurt everyday. In those five months my dark circles are gone, no more bladder infections, no rashes, no wetting the bed, my joints and muscles are 100% better and most of all NO dirrhea or gut pain!!!!!

And Then The Sun Came Out..

in so many more ways than one....

The crazy volatile, often violent, weather of the past few days has moved out (I got caught TWICE in a torrential downpour.. let's just say that it was a GOOD thing that I was wearing a dark colored T-shirt and dark colored pants.. if you get my drift).

Everything outside looks shiny, crisp, new.. The putrid air from before the storms is gone (but I'm sure it'll be back .. as temps outside are rapidly rising).

Salamander is doing better.. still edgy, temper 'right below the surface', claws ready to come out at a moment's notice.. but he's calmer, not so obsessive and obsessed, not so defiant. I think the extra liver support is having an effect, his color is much better (the yellow tinge is gone) and his creatinine has been steadily dropping since Wednesday morning. I think his liver and kidneys are better able to keep up with stuff again ...

And when Salamander is doing better, I am doing better, and when I am doing better, Salamander is doing better (we definitely feed off each other), which then creates a more peaceful atmosphere, which makes Potatey feel better, which then feeds back into how I am feeling, and so on and so forth (yes, a house full of neurotics that feed of each other's neuroses .. LOL).

I wanted to follow up on something I wrote yesterday:
"And to my shock and delight, I found a lot of understanding, support and even a little comfort in a very unexpected place/situation."

One of my client's had a little celebration *for a job well done* yesterday afternoon, and invited me to attend (as I had been involved in that particular job). The way things went yesterday morning, I really didn't feel like going. But I knew I needed to get away from all the personal B.. S for a bit. I almost didn't make it, as many of the roads I needed to take were partially flooded.

When I got there, the event had already started... I grabbed a plate of food and threw myself into the gathering. Ended up sitting with the project lead of a next project that I am working on for this client. We had some business to catch up on ... I am running a bit late with getting back to him on some stuff .. as obviously it's been a bit of a zoo here this week. After taking care of business, he asked "Are you OK? It's been waaay too quiet from your end. Everything OK with the boys?"
[I tend to disclose very early on in my professional relationships what can be going on in my house. I am sure many would consider that a career limiting move, but the foundation of everything I do is honesty and integrity, and I need for people to understand that when I go MIA for a day or two, it's not a willful "I can't be bothered with getting back to you" thing, but a "Shit has hit the fan (again) and I need a little time" thing]

I was going to brush him off with my usual "Things have been a bit bumpy, but I'll figure it out, I always do" spiel, but he wouldn't let me. He kept asking questions - not in an obnoxious, intrusive kinda way, he just really wanted to know. So we ended up talking about stuff for a good hour. And he really got where I was coming from and why things can get rough (and there's a reason for that *getting it*, but I won't go into that as that is not my story to tell)

The whole conversation, how it came to be, and how comfortable/comforting it was took me completely by surprise, as really I've only interacted on a casual, business level with this person for maybe a grand total of 3 weeks. And it was a bit unnerving too. I certainly have found myself in these kinds of conversations with other women/moms before, in all kinds of settings. Not so often with a member of the opposite gender (as I typically have *the wall* firmly in place). And I have a sense that this won't be the last time I'll end up in this type of conversation with this person. We'll see...

Later that afternoon, I ended up in a long conversation with another person (female this time) about the challenges of raising kiddos that may look perfectly *normal* but have neurological/psychological stuff going on. Turns out several of her kids have severe ADHD/SPD and that she has several cousins with Asperger's .And several other people drifted in and out of that conversation commenting that they too had kids in their families with challenges (yup, these kids are EVERYWHERE).

I had certainly not expected to find the emotional support, recognition and empathy I received yesterday afternoon in a business setting at a client. And while this certainly went a long way towards seriously boosting my morale (and making me feel a heck of a lot less *isolated*), it does make me a little nervous. I am a firm believer of NOT *mixing business with pleasure*, but maybe *the universe* is telling me that it's OK to let up on that a bit ....

Added at 2.30 pm: HMMM, I think *the universe* just let me know that it is MORE than OK to let up on that a bit...

Last One..

on Moronic Mike Savage...

Received this statement from Wendy Fournier, President of the NAA. She truly reached out to the Moron. And got the door slammed in her face....

A few excerpts that particularly resonated with me.

In the *Hear, Hear* category:

"For the last week, our community has been completely enveloped in the Michael Savage controversy. It infuriates me that this one man has managed to take away so much of our already limited time and energy by forcing us to defend ourselves and our beloved children against his vile remarks."

AND

"On the subject of diagnosis, our kids are diagnosed based on observation of skills and behaviors. All the while, the medical community completely fails to investigate what might be causing those behaviors. This needs to change. We need research to turn away from number-crunching epidemiological studies and the search for the elusive Autism gene, and start looking from a biological standpoint at the children who are currently affected. Your child may very well meet the current diagnostic criteria for Autism, but what if he or she is really suffering from heavy metal toxicity or auto-immune encephalopathy, for example? Those illnesses are known to cause symptoms of Autism. If your doctor kept digging to find the cause of your child’s neurological dysfunction, you would likely come out on the other side with a treatable illness and hope for the future, not to mention health insurance coverage for treatment. But instead, you are told that your child has autism, there is no treatment, hurry to get on a waiting list for behavioral therapies. Mainstream physicians need to start recognizing and treating the underlying medical issues that are causing the symptoms we collectively observe and diagnose as autism, only then will we start to make some real progress. My hope is that one day, no child will be diagnosed with “Autism”, that all sick children will be properly diagnosed and successfully treated for the illnesses that they truly suffer from."

And yes, exactly WHERE is that Pot O' Gold that you can freely dip into after your child is diagnosed with autism?

"Back to Savage and his misconceptions, this one is almost amusing. He actually thinks that having a child with autism opens the door to free medical treatment and services from the government, suggesting that parents might actually push for a diagnosis in an effort to screw the government and our fellow taxpayers. Those of us in the trenches know that the word “autism” is the last thing a parent wants to hear. Savage’s implied freebies are nowhere to be found. The minute your child is diagnosed, you need to fit yourself with a suit of armor, a shield and a big-ass sword, because you have just taken the first step into a never-ending fight to get the services and medical care that your child needs. Our kids are placed on waiting lists for services that can be years long, our health insurance companies turn their backs on us, and our overwhelmed and under-funded school districts force us to fight for even the most basic services to help our kids. The number of families facing bankruptcy and losing their homes to provide their children with the care they need is staggering. "

And this just made me so, so sad (as I am too damn tired tonite to get mad)


"That damage is very real, and it frightens me for our children. I just got a phone call from a 74-year-old lady from California who was literally screaming at me, saying that we are a bunch of hysterical mothers who refuse to discipline our kids. She could barely catch her breath, and she’s calling us hysterical? I ended up hanging up on her and she’s called back 6 times already - that’s how fired up and anxious she is to criticize us as parents and the children we love. This is the damage that Mike Savage has done, whether he meant to or not is completely irrelevant. There are people out there who are taking his words at face value and his message is one of hate."

To quote Barbara Fischkin:

"If only it was true that the kids are mere brats and all we need is a visit from The Nanny. If you were right, then life would be monumentally easier for most of us."

NOT A Good Morning...

6:40 pm update. Both boys received lots of extra TLC from their various caregivers today, had pretty good days, and seem to be doing allright now.

And to my shock and delight, I found a lot of understanding, support and even a little comfort in a very unexpected place/situation. More on that later...


Not a Good Morning at all... Don't even know where to begin....
Better sit down, dear Reader, this is going to be a long post...

So Salamander as of about mid last week has been quite "Oppositional Deviant". Constantly challenging rules that he knows are not negotiable. Talking Back. Attitude. Purposely picking fights over silly stuff. Pushing everybody's buttons. Yes, yes, sounds like *kiddo entering puberty* stuff.

He has also been OBSESSIVELY talking about all the foods he cannot have. We can't pass a McD or a Burger King without him launching into a long monologue about how he used to be able to go there (up until he was 6 - before mommy realized that the foods he was eating were poisoning him.. ), how he LOVES going to these places (he obviously forgot all about the extensive screaming meltdowns), and how it is so unfair he can't go there anymore (and he's right. It's not. There is however nothing I can do about that.. the food that is served there is simply not stuff he can eat). Same thing with ads on TV or the radio about places like Uno's, Domino's, Friendly's, etc. He goes ON and ON and ON and ON.

He used to do this "Oppositional/Deviant, picking fights over nothing, talking excessively about foods he cannot have" a lot, especially in the early days of dietary interventions, when I was weaning him of gluten, soy, dairy etc. These behaviors would be very pronounced during *withdrawal* periods. And I have seen *spikes* whenever there has been an infraction.

I've been thinking quite a bit about the potential for infractions these past few days, in light of the *slapping* episode and some other stuff. I gave Salamander the 3rd degree about what he may have eaten on Friday afternoon - all clear. So I suspect that things may be slipping in at camp. He does bring all his foods and drinks, but as you all know, soy, gluten, dairy, artificials are in art supplies too; and he IS doing a lot more arts and crafts this year. I did provide *safe* art supplies, but I am wondering.. so it's a question that needs to be asked. I also need to check out the *special* snacks at camp (remember I mentioned that camp bought special snacks this year instead of me providing them?).

Last nite was a crazy nite. Lots of T-storms rolling through. And while they no longer trigger utter terror and panic attacks in Salamander, I do think he is sensitive to the atmospheric pressure changes. And last nite too he did the excessive talking about foods he cannot have thing (while I made pizza from scratch, he monologued on how a pizza from Pizza Hut is so good.. he's never EVER had pizza from Pizza Hut in his entire life!!).

And yes, my feelings do get hurt when he does this. I work my a$$ of, spend enormous amounts of money and time in making foods from scratch, and he and Potatey are so much healthier for it, and all he can talk about, while he's kinda picking at the pizza I made (which Potatey is scarfing down .. and typically Salamander inhales his too) is how he misses the McD Quarter Pounder w/Cheese, or the Mozarella Sticks at Friendly's (and he has not had any of that stuff in 4 (!!) YEARS). [yes, this all does sound remarkably like a *junkie looking for a fix* eh?]

Yes, a long lead-in to this morning's *fun and games*...

This morning, 7;15 am. Both boys were still dead asleep (almost unheard of for Potatey) and v e r y s l o w to wake up, get showered, get dressed. So we were late getting started on breakfast .. And during breakfast again, Salamander lamented about all the foods he cannot have, that he cannot bring in a lunchable like his friends, etc. etc (and believe me, I SO get how hard it is to have food that looks so different from what your buddies are eating.. Social eating is so important for (pre)teens, especially combined with that strong urge to want to fit in...).

Salamander needed an enormous amount of coaching and prompting to actually EAT his breakfast and get his supplements in, so we were running waaaaay behind on our usual schedule (plus it's so much FUN to put a lunchbox together while hearing a constant stream of negatives about everything you're putting in it).

Yes, all of the coaching, prompting, reminding, redirecting, combined with deflecting the endless stream of negative food related comments was really getting under my skin (and of course poor Potatey is feeling completely ignored .. he wants to talk with me about stuff too .. but he cannot get a word in ..)

We finally get everybody in the car around 8.50 am (Salamander's camp start at 9 am, Potatey's outside playtime at HIS school starts at 9 am too; so it's always an interesting *juggling act*). The sunroof in my car is not closing properly (hasn't done so in a while), typically not an issue, but with the downpours we've had.. Yup, drivers' seat SOPPING WET. So I comment 'hmm, somebody messed with my sunroof.." And immediately Salamander goes "Well, it wasn't ME." (and that's another thing I've heard a LOT since mid last week .. any comment I make about anything, Salamander immediately goes: "Well, it wasn't ME." Anything anybody says is immediately perceived as an accusation .. )

And I just lost it.. I actually had to get out of the car and walk back into the house for a few minutes to take control of my temper, because otherwise I would have ended up yelling at Salamander. Which never solves anything. Me walking away for a bit DID make Salamander realize that he was crossing a line again (of course poor Potatey is trying to *broker peace*, as he hates it when Salamander and I get mad at each other).

Salamander is now getting upset because I walked away for a few minutes, he gets more and more agitated and panicky, then finally bursts into tears. It's now 9 am and we still haven't left the house, and out comes: "I am really not feeling good and there are problems at camp, and I don't know what to do."

We really don't have time at that point to talk about the camp issues .. I have Potatey to get to his camp too otherwise he'll be missing HIS outside time... But I do the best I can while driving to camp..

And here's what's going on. Salamander right now, of his circle of friends/camp buddies (and this particular group is all high functioning spectrum kiddos), is by far the socially most sophisticated one. And his friends realize that. So they come to him to resolve conflicts, to mediate, to smooth things over (this particular group of kids are all strong willed, determined young buggers; while they play really well together, their disagreements can get quite *intense*.. LOL). And right now, doing that kind of stuff exceeds Salamander's level of social competency (heck, a lot of ADULTS can't do what he's asked to do), and combined with him working really hard on making new friendships himself, it's just too much for him to handle. And he doesn't know what to tell his buddies/friends when they ask for his help with something and he doesn't know what to do (Good for him recognizing that, and we talked about what he could do/say..).

Now the above is obviously NOT a quick, 2 minute conversation. So by now its 9.10 am, we're at camp, and Salamander is still waaaay too upset to leave the car. So we talk for another 5 minutes, but Potatey is getting annoyed as he knows he is missing HIS outside time, so I HAVE to get Salamander out of the car to get to camp so I can get Potatey to where he needs to go.
Salamander leaves the car, still upset, having that intensely sad look on his face that just cuts me to my soul (I KNOW he needs more time..). Lead counselor comes over.. helps with getting Salamander out of the car and inside the camp facility.. Lead counselor and I talk for a few minutes about what transpired, where Salamander is struggling and she promises that she'll find an opportunity to talk with him about stuff too.

Potatey is now SUPER ANNOYED, so I don't get a chance to ask about food/art supply infractions... As I get back in the car, I see Salamander's sad sad face peer out of the camp facility looking at me (and I just want to run back and grab him.. but I can't.. as I have business commitments all afternoon today..)

It's now 9.20 am and I need to get gas for my car (something I had wanted to do on the drive IN to Salamander's camp, but as we left so late..). I HAVE to make a stop at the gas station (and the one thing I HATE about VW's is that they have the gas tank hatch on the passenger side, NOT the driver's side..), gas station is a mob scene, I have to back into a slot (because of the gas tank hatch location).. that pump is broken. More maneuvering, finally I can fill up.

9.27 am, we're back on the road. Potatey is SOOOO missing his outside time (and he's not happy about it.. I can't blame him.. it really isn't fair that he is missing out on one of his favorite activities because of shenanigans around his brother). And then, to top things off, Potatey HAS to go potty...

9.40 am, we get to Potatey's school. And we see his class mates line up on the playground to go back inside.. And Potatey looses it...like he has NOT lost it in a long long time (as he is typically very flexible, understanding and accommodating, but he IS only 5 years old).

I got Potatey inside, we sat quietly somewhere, me just holding and hugging him. But finally, at 9.55 am I HAD to go.. I have stuff to get done BEFORE I need to get to my business meetings..

So I have to leave another sad child....And I feel like sh#t, like a miserable failures as I have not been able to get either of my kids back to their *good space*.

Some days I just cannot win...

Healthy (??) Harvest..

[Do not read this post if you're easily grossed out or if you do not handle *potty humor* very well]

Right now there are 4 boxes neatly stacked on my front deck. They represent today's *harvest*. Specifically, there is a CDSA and a UTM for Potatey, and a UTEE and FM for Salamander.

For those of you that are living *la vida loca* with me, you know what that means. For those of you that are not, these lovely acronyms are fancy schmancy references to pee and poo testing.

Getting Potatey's samples wasn't so bad. He did his *business* last nite and this morning, I collected the necessary samples, prepped them and neatly bottled and boxed them up. DONE.

Salamander was a different story altogether. His *output* has been, well, nasty as of late. I was able to get through the UTEE collection relatively unharmed.

However, yesterday I received feedback that Salamander's liver is struggling to keep up with the amount of junk he's clearing (nothing that can't be corrected.. and it certainly explains a few things I've seen for the past week or so .. I know what to do to fix this, I just do not like any issues associated with liver and kidneys). So, during Cranial Sacral Therapy, his therapist did quite a bit of *liver work*. And last night, I increased Salamander's liver support supplements.

So not suprisingly, this morning's *crop* could only be classified as TT* Extraordinaire. OMG, I will have to fumigate my house to clear the stench (Oh, no, wait, I already DID - I don't think I'll be having an insect problem for a while..) !!! LOL

It'll be interesting (yes, I am absolutely one *twisted sister*) to see what the FM results show.

TG everything is bottled up, double wrapped, boxed up and placed in a plastic overwrap bag. Otherwise there would be no way in HELL that the DHL guy would ever set foot in this street again.... (and as I have weekly harvests to get out, THAT would be a problem)

Off to get ready for my other jobs...

*TT = Toxic Turd

Note To Self

Do NOT watch a *Prince Charming* comes to rescue of mom with kids dealing on her own with many hardships, and stands shoulder to shoulder with her to slay all her demons type movie after stumbling through an up/down kinda day with Salamander (which included receiving somewhat troubling medical information). Instead of the 'Ah, how cute' response, the movie just made me sad.... Yes, yes, I KNOW that these movies are completely unrealistic and have no bearing in reality what-so-ever.. What can I say? I AM a *hopeless romantic*..

[Of course I bounced the events of today off on my friends this afternoon/tonite, but it just isn't the same thing ... Typically, I don't *go there*, but some other stuff happened that all compounded ..]

Ms. K *Savages* Savage..

(and all morons like him)

This is why I adore Ms. K. S.


UPDATED TO ADD A LINK TO A VERY WELL ARTICULATED AND VERY POLITE LETTER WADE RANKIN (INJECTINGSENSE) WROTE TO SAVAGE'S SPONSORS

If You Won't Listen To The Moms

then maybe you'll *take it* from this guy.

Granted, he has a *dog in this fight*.

But you can hardly dismiss this well educated, very articulate MAN as being a hysterical, suffering from paranoia induced by google searches, needs somebody to blame for not getting that perfect child, *mommy* .

(and I WISH that Hannah's case was as rare as media likes to present. Dr. Poling is absolutely right, for most of our kids the mitocondrial piece is indeed "We Never Looked")

One More...

(for now that is..)

An angry mum from across the Pond wrote this. And I am sure if I asked around, I could find a Dutch or German mommy or two or three to write something very similar (or I could get a few folks from across the Pond that worked in special ed for a long time to comment on how things have changed over the course of their career.. hint, hint..).

This paragraph in particular cut me to down to the deepest core of my soul. It's how I feel every single time I end up in a gathering with a lot of *our* kids. It's how I feel in the morning when I drop Salamander off at his camp:

"That was an awful thing to see [ ..], such a throng of autism, in one hall in one school in Shropshire. Young boys who should be able to do the simplest tasks but can't, should be playing football with their mates, going off camping, bursting out of school ready to climb trees and soak up the summer fun but instead are being led out by the hand or hands to their buses by carers. An utter waste of beautiful children."

[Yeah, you could say that this whole *Joy of Autism* thing is completely lost on me]

It's happening everywhere, people. It's not just *the hysterical and self-obsessed American mommies who want perfect babies* (THAT was a lovely little expression tossed my way about a year ago ... funny thing is that the issuer of said comment KNOWS I am NOT American) who are speaking up.

To all parents out there with little ones (and even the bigger ones):
Please, please, please, do your homework. Don't just consent to something because the doctor says *it's a good idea*. Ask questions, do not accept a dismissive attitude.

And please, if you have any any concerns at all about your child's development, take action NOW. Don't wait. Have your child evaluated (and fire the doctor who tells you: "Don't worry. Boys just are a little slower."]

And while you wait for your appointments, there are things you can do NOW. One, relatively easy, intervention is changing your child's diet. And don't give me the 'Well, I can't take little Johnnie's yogurt away, it's all he'll eat' excuse. THAT is YOUR excuse for not getting off your butt and taking action. If I can get an, at that time extremely rigid and extremely stubborn 6 year old boy that was only eating Lunchables, peanut butter and jelly sandwiches, mozzarella sticks and apples to change his diet, you can too (not saying it was a fun thing to do, but it was necessary. PERIOD).

And while you make dietary changes for the child you are concerned about, make them for the whole family. I truly think that every child (not just the affected ones) could benefit from an artificial crap free and GFCFSF diet.

[and if your kids are perfectly *normal* and perfectly healthy, count your blessings. And the next time you moan and groan about how hard it is to keep up with the kids' social and after school activities calendar, remember that there are SO MANY of us that would gladly have THOSE kinds of issues to deal with]

Most Definitely "Off"

Salamander had a good day yesterday. No accidents, BMs returning to normal (they continue to be HUGE and frequent).

But this morning things were definitely "off" again. Very low muscle tone, spacey/foggy, grouchy, trouble with executing multi step tasks (I had to prompt and coach a lot this morning).

At breakfast he was quite agitated (and of course Potatey was being a total pest asking him 18 million questions), and he snapped at Potatey; "Stop talking. You are hurting my ears.". Then he turned to me and said: "Mom, my autism is getting too big, my autism is getting too big." [this is from a book by Karl Dunn Buron called When My Autism Gets too Big. It's a relaxation book for Children with ASD]. I said: "OK hon, what do you do when your autism gets too big." And Salamander started his deep breathing, his chair push ups and his 'happy thoughts' routine, which definitely helped him regain some control.

He did get quite stimmy over the course of breakfast; rubbing his chin against the rim of his glass, finger puppets, all stuff I have not seen in a long long while. He also started talking about himself in the 3rd person: "Salamander wants bacon, mommy.", "Can Salamander go potty?", etc.

Not sure yet what to make of all of this. We could be having ammonia issues again (time to really watch the protein intake again - he LOVES the zucchini bread I made on Sunday, but he may be eating too much of it), it could also continued GABA/glutamate issues, or just *plain ole' detox*. I did sent in a UTM last week Wednesday, so I should have those results any day now. I'll be doing an UTEE tomorrow morning, and I am going to try to get samples for a FM and a CDSA tonite and tomorrow.

Salamander does have an appointment with his CST this afternoon, will be interesting to get her read on things (I should remember to tell her that I did start tick support stuff after his last visit with her).

We'll see how things go. It's quite cloudy and much cooler today, so maybe that'll help stabilize the glutamates (on the flip side, cloudy weather definitely DOES affect Salamander's mood and activity levels).

Off to clean up my pigsty house and then crank hard on work for a few hours.

Something Is Not "Right"

Salamander has been having a TON of accidents over the weekend, and several *meanie, greenie* bowel movements since Saturday morning. He was also very tired and spacey yesterday (and still tired this morning too ..).

The above, together with the *slapping incident*, makes me wonder if he had a dietary infraction somewhere. And the only time frame I can think of where that could have happened is Friday afternoon...
It could also be detox.. I AM working on gut supplements again ...

Well, Salamander is due for a CDSA anyway.. I'll need to check to see if I still have an FM kit floating around...


Oh, got myself a pedometer, as I want to get serious again on training for a road race Salamander and I will be running in later this year. Just for sh#ts and giggles, I clipped it on yesterday morning. From the moment my feet hit the floor yesterday morning until I went to bed late last night, I walked 5.5 miles (!!). And this is all just in and around my house; cooking, cleaning, laundry, playing with the boys, etc.. Heck, I know I don't sit down much during a given day, but to actually *see* this in some numbers?

Oy.

Clipped the pedometer on again today.. since 6.30 am this morning, I've *logged* 1.3 miles so far ...

Zucchini Bread

When I need to really, really let my thoughts wander, I cook. Don't ask me why.. I just do.

As the zucchini crop at the farm is really starting to come in (despite the insanely hot, not enough rain, weather), I decided to make Zucchini Bread. It came out really GOOD!

Best parts? The boyos like it, and they have no idea there's zucchini in it. Ha!!

Here's the recipe. It is very high protein, so watch the amount consumed if you have kiddos that are sulphur sensitive and/or have protein digestion issues (like mine do).

3 eggs
3 cups almond flour
1 tsp vanilla
1/2 tsp baking soda
1/2 teaspoon salt
1/3 cup safflower oil
2 zucchinis - peeled and grated
1/3 - 1/2 cup dried cranberries
2/3 cup honey

[credit where credit is due: I modified a recipe from "Cooking to Heal Little Tummies" by Jenna Roberts and Natalie Hagood]

Mix all ingredients thoroughly in a large bow. Preheat oven at 350 degrees. Grease two Pyrex glass dishes (I ended up using one glass loaf pan and 1 glass pie pan; I grease using organic sunflower oil spray). Fill dishes half full (the stuff does rise a bit). Bake for 40 - 45 minutes or until a toothpick comes out clean.

I am going to store the left overs in the fridge. And I'll try later this week if I can toast this stuff in my toaster oven.

Update

Things continued to be *bumpy* yesterday. Salamander was quite jittery around me yesterday, and although it broke my heart to see him so *on eggshells*, it also shows me that he got that he really crossed a line yesterday.

To provide some perspective, Salamander certainly has gotten physical with me before. Especially when he's in detox, head butting, pinching, biting, spitting, kicking is par for the course. But typically I can see these episodes/actions coming, and then re-direct or deflect. But he has never ever slapped me in the face before, and especially NOT without any type of warning. He completely caught me off guard.

Now granted, several things had happened on Friday afternoon and on Saturday morning that added to the built up of what then culminated in, what shall now be referred to as, the *slapping episode*. It is also incredibly hot and muggy out here (which contributes to "glutamates rising" and Salamander is extremely sensitive to glutamates). And we had a Full Moon on July 18 (yes, this sounds kinda New Age bullshitty, but I've been at this long enough to know that Full Moon definitely makes Salamanders *claws* come out). Regardless, the way Salamander responded is unacceptable and inexcusable, and he gets that.

Around 5 pm yesterday afternoon, he became increasingly agitated. Very fidgety, snappy, definitely the claws coming out again. He looked at me with this look of panic on his face and said "Mom, my head is just racing and racing and racing. My brain feels all hot and if I don't cool it down it's gonna explode." A pretty darn good description of neurotransmitters just having gone completely kooky. So I gave him his bedtime GABA with dinner, and then after dinner when I asked him how things were he did say his brain had slowed down (now whether that was the effect of the GABA, or the effect of eating, who knows... and really who cares.. he felt more in control, and that's what matters).

At bedtime he was quite anxious. We had to go through the 'is the stove off, are the smoke detectors working, are all the electric appliances off, are the fire extinguishers working' spiel again (Salamander is TERRIFIED of fires, and can be quite OCD about fire prevention measures). Poor thing also said; "Momma, I have all these feelings and I can't sort through them. I need your help!" Of course it's hard to help when your child can't tell you exactly WHAT they are feeling, so I just held him for a while until he calmed down. He even said; "Mommy, can I sleep with you tonite?", which he has not asked for for a loooooong time. As I really don't want to fall back into that habit again, I explained to him that he couldn't (and why), but I reminded him that my bedroom is right next door to his and that he could come find me if he needed me.

So something is *off*. As usual, it'll be a combo of many, many things, and we'll just have to work through things until all the pieces fall into place again.
I'm just glad for one that we are NOW at a point that these kinds of conversations are possible. They weren't a couple of years ago...

Well, I gotta go make sure my monkeys take their umpteen gazillion supplements.. I'll be back on later..

Oh, a closing comment to Mr. Mike Savage (yes, the idiot that's been spouting off regarding kids with autism and their parents):

"I hereby invite you to spend a week in my house, preferably during a period when it's incredibly hot and muggy and preferably with a Full Moon during that same time period. Then you'll get to see how much of *autism* is due to inept parenting. You'll get to see what it takes to parent a 10 year old boy with ASD, NLD, several LDs, a slew of medical problems, an anxiety disorder, bipolar tendencies, who's entering puberty (want any fries with that?). My bet is that you'll be running from this house screaming within less than 24 hours (like most *men*), as it takes *balls* (which you obviously don't have) to be in the *war zone* 24/7/365/20+.

And then there are also several families with completely neurotypical children I'd like to introduce you, so you can really see what inept parenting looks like.

Mike, you're a donkey's behind."

Added at 12.30 pm:
Mike Savage's *Apology*. And who says that autism parents don't have a sense of humor...

Whadayathink???

And then of course Potatey fell apart... And I so understand....And I wish that it was an option for me to pitch a loud, hysterical crying, screaming, throwing things, tantrum...

Both boys are better now, we're going to watch a bit of a movie together and then we'll decide what we're gonna do the rest of the afternoon.

You think I should get me some of these as a pick-me-up? I used to be quite good at growing things like that (in what feels like several lifetimes ago) ...

We're Working Through Stuff...

As I kinda suspected, Salamander's lashing out was a 'letting it all out due to a build-up of a bunch of stuff' issue... And we're talking through all the stuff right now...

Still, that doesn't make what he did acceptable. And he's getting that part loud and clear. He does feel really bad, especially after I explained that slapping a person like he slapped me means that you think the other person is just absolutely worthless, that that person is *nothing*. He turned very pale when I told him that and said "I had no idea that that is what that meant. This is what people do in those silly cartoons all the time..."

I DO believe that he truly did not understand what a slap like that communicates (and once again, it also shows how *dangerous* even silly cartoons can be for a child that doesn't necessarily process the non-spoken parts of certain actions). The good that came out of this is that now he DOES know. And I don't think he'll ever slap me or anybody else like that ever again.

Impulse control.. it's so damn hard...

Processing the implications of impulsive actions and then dealing with the emotional consequences.... even harder.

I explained to Salamander that, because of what happened, I am going to need a little distance from him today.. emotional distance that is. That I am not going to be as able today to *place myself in his shoes and see things from his point of view* as I typically am. And that that means he may not get as much help today sorting through things as he typically gets.

And I think me saying THAT was actually more *punishment* for him than the time spent in his room and loosing a shopping privilege.

To Be Continued

The other hard part? Having to sent Potatey away, who was working his little tail off trying to make me and Salamander feel better, so Salamander and I had the space and time to really talk. So who is really getting *punished* for Salamander's behaviors????

Welcome to the Rollercoaster Ride from Hell. Some days I just cannot win ...

And Then...

you have to wonder if all progress I think Salamander has made is just me being in denial....

The boys and I were watching a Disney Playhouse show this morning... and this particular episode revolved around a search for a Hula Dancing Hybiscus.

At the end of the show, Mickey, Donald and Pluto were hula dancing, in little hula skirts. Salamander wasn't paying attention, Potatey yelled "Salamander, look at this".

Salamander turned around, looked at the TV and went: "OMG, THIS is just SO wrong!"
And it was such an age appropriate, becoming a teenager kinda comment that I couldn't help but burst out laughing.

Salamander whipped around with this crazy look in his eyes and and bitch slapped me across the face.. three times.. HARD, while screaming from the top of his lungs 'stop laughing at me, stop laughing at me."

Now granted, it is hard for Salamander to distinguish between being laughed at and people thinking something he said was extremely funny. Regardless, him slapping me is absolutely UNACCEPTABLE. And he's now in his room, in time out, and he will loose a shopping privilige for this afternoon.

I am crying, and I am too upset to even go and talk with Salamander..

How many times have I worked with him on situations like this? How many times have I told him "If you feel yourself getting that upset, take a deep breath, try to USE YOUR WORDS, and if you can't WALK AWAY!"

Is any of it even registering??

On The Distance Travelled...

You all familiar with the ATEC? As in Autism Treatment Evaluation Checklist?

I completed the ATEC for Salamander, to get a baseline, in July of 2004, just prior to starting DAN! protocol based treatments for him.

His score?

A whopping 101 (yes, incredibly high for somebody who was diagnosed with *Autism Lite*)
Of which 24 points in the sociability category, 20 points in Sensory/Cognitive Awareness, and 50 in Health/Physical/Behavior (and the remaining 7 in the Communication category; Salamander had speech).
That is where we started. Things were NOT good. NOT good at all.

In August of 2006, after almost 2 years of DAN! treatments and a ton of remedial therapies (with an depressing amount of one step forward, two steps back.. ), I redid Salamander's ATEC.

Score had dropped to 43.
Of which 6 points in the sociability category, 8 points in Sensory/Cognitive Awareness, and 28 in Health/Physical/Behavior.

An impressive change by all accounts.

But let me tell you, those 28 points in Health/Physical/Behavior still made for a very tough home life.

After getting that incredible feedback from Salamander's counselor yesterday, I redid the ATEC. And this ATEC will reflect the progress made since August 2006 (which coincided with me switching from DAN! to Dr. Yasko's program; we kept his diet, remedial therapies, school interventions etc going):

His score is now 14!!!! Yes, FOURTEEN!!!

Of which 1 point in Sociability, 2 points in Sensory/Cognitive Awareness, and only 10 points left in Health/Physical/Behavior.

Here are the answers on the Health/Physical/Behavior Category for July 04 (black) August 06 (blue) and now (red).

Oh. My. God!!!!
I don't know exactly what the HELL I am treating, or why I should be condemned for wanting to treat what's presented below (and to be honest, I don't give a rodent's behind..).

I do know however that Salamander's quality of life has improved ENORMOUSLY.

**IV. Health/Physical/Behavior
1. Bed-wetting: Serious Problem Serious Problem NOT A PROBLEM
2. Wets pants/diapers: Moderate Problem Minor Problem (GFCFSF etc F helped a lot here) Minor Problem
3. Soils pants/diapers: Moderate Problem Minor Problem (see 3) Minor Problem
4. Diarrhea: Serious Problem Not a Problem (see 3) NOT A PROBLEM
5. Constipation: Serious Problem Minor Problem NOT A PROBLEM
6. Sleep problems: Serious Problem Minor Problem (modified Feingold helped a LOT with sleep issues) NOT A PROBLEM
7. Eats too much/too little: Serious Problem Moderate Problem NOT A PROBLEM
8. Extremely limited diet: Serious Problem Minor Problem (see 3) NOT A PROBLEM
9. Hyperactive: Serious Problem Moderate Problem Moderate Problem
10. Lethargic: Not a Problem Not a Problem Minor Problem
11. Hits or injures self: Minor Problem Not a Problem Not a Problem
12. Hits or injures others: Serious Problem Moderate Problem MINOR PROBLEM
13. Destructive: Serious Problem Moderate Problem NOT A PROBLEM
14. Sound-sensitive: Moderate Problem Moderate Problem NOT A PROBLEM
15. Anxious/fearful: Moderate Problem Moderate Problem MINOR PROBLEM
16. Unhappy/crying: Moderate Problem Minor Problem NOT A PROBLEM
17. Seizures: Not a Problem Not a Problem Not a Problem
18. Obsessive speech: Moderate Problem Moderate Problem MINOR PROBLEM
19. Rigid routines: Moderate Problem Minor Problem NOT A PROBLEM
20. Shouts or screams: Moderate Problem Minor Problem NOT A PROBLEM
21. Demands sameness: Moderate Problem Minor Problem NOT A PROBLEM
22. Often agitated: Moderate Problem Moderate Problem MINOR PROBLEM
23. Not sensitive to pain: Not a Problem Moderate Problem NOT A PROBLEM
24. Hooked or fixated on certain objects/topics: Moderate Problem Moderate Problem MINOR PROBLEM
25. Repetitive movements: Not a Problem Minor Problem NOT A PROBLEM

(Yes, yes, I realize, we still have work left to do...But we've come a loooooong way in 4 years)

Milestones....

So Salamander reached a new milestone this morning. He started using deodorant (all natural, aluminum free of course.. he and I are not working our butts off to get toxins OUT of him to put them right back in..). He does not NEED the deodorant just yet.. but that time won't be far away. And as a friend reminded me when I shared that Salamander had been *nagging* me about getting him some grooming essentials "USE that interest to get routines established NOW."

So we are...

He is definitely growing up.. I've seen an increase in the peach fuzz on his face...(especially off to the sides of his upper lip).. and there are some other signs too... A friend stopped by for a bit last nite, who hadn't seen Salamander for a few months. And the first things out my friend's mouth were, after Salamander uncurled himself from a chair: "When the heck did Salamander get this tall?' and "Wow, he's turning into Mr. Universe." (as Salamander's shoulders are DEFINITELY broadening.. and he has a lot more muscle definition). Salamander grinned like the Cheshire Cat hearing those comments...

I am excited and ABSOLUTELY PETRIFIED AT the same time (as I am now truly entering *uncharted* waters..)

Anyway, when I dropped Salamander off at camp yesterday, I asked the lead counselor how he had been doing that week (as Salamander has been so so so so TIRED..).

Her response: "I just have to tell you how absolutely GREAT he is this year. What a difference with previous summers. He is participating in every single activity, he's playing a lot with the other kids, really appropriate play. And he is having these incredible conversations! With us, with the other kids. In past years, he avoided any and all team activities. He would try to get away the moment he got the opportunity. And in team activities, he would just stand there, not knowing what to do. Now he can't get enough. He's actively coaching the other kids, he's negotiating when there's an issue, he's supportive of the other kids. He is one of the most popular kids. And he's so HAPPY this year! He is having such a good time."

My mouth just fell open. Sure, Salamander has made a TON of gains over the last year, especially in the past 4 to 6 months or so. I just lost sight of how much (tends to happen when you're *at it* 24/7).... And he has been talking a LOT about what happens during the day at camp this year (prior years I've had to drag any information out of him..)

It was an incredible feeling to hear all this praise tumble out of this counselor's mouth (and believe me, while she has always tried very hard to be understanding of Salamander's particular issues and challenges, and to be supportive, I think she did get *fed up* with him at times.. And I DO understand THAT). And definitely validation that all that we've worked on so hard over the last 4+ years and the many HELLS we've gone through are paying off.

Salamander is truly coming into his own .. and I can't WAIT to see what happens next ...


I did try to share all of this with Salamander's dad this morning.

And what came back was "So it sounds like Salamander is taking on a leadership role with the other kids? (the *finally* was left unspoken).

I responded that THAT, to me, really was a development of much lesser importance.

The important development to ME (and I think to Salamander too) is that he is really starting to ENJOY participating in all these interactions, being with other people, building relationships with other people.

Counter comment: "Well, being a leader will really boost his self esteem."

Personally, I don't think the 'being a leader' bit will boost Salamander's self esteem. I think that continued success at making and keeping friends, continuing to have satisfactory and rewarding (to Salamander personally) play experiences, having other kids like HIM and ask HIM if he can please come and play with THEM (as opposed to the other way around) will really boost his self esteem.

But maybe that's because I'm a woman. Maybe to a male this whole *leadership thing* is of much greater importance...

Another Crazy Day "Off"

and I'm too beat to post about it right now.

Got some really neat feedback on how Salamander is doing in camp this year (and as a reminder, he is going there for his 5th summer now), they are just blown away by the changes in him. And all that was said is a COMPLETE validation of everything we've worked on, everything we've gone through to get to this point. And it felt so good to hear all of that (as *living in the trenches* 24/7 does make you loose sight of the bigger picture). And what was said very nicely meshed with a conversation I had with another person this past Saturday

My gorgeous guy is coming into his own (and I can't help it..I'll drag out the old 'caterpillar emerging from its chrysalis as a beautiful butterfly' analogy again.. NAA has a beautiful PSA that speaks to this).

I'll post more about what was said when I am coherent again.

G'nite

So I Took A Day Off...

(from PAYING work that is...)

And on my *day off* I:

• did three full loads of laundry (including one load containing several of my *mom, I had an accident* favorites.. LOL).
• cleaned up my incredibly messy house.
• reordered supplements for the boys.
• planned out what medical testing I need to do for the boys over the remainder of the summer (and purchased the necessary test kits).
• completed the boys' LEGO wishlists and forwarded those wishlists to the set of grandparents that requested said wishlists.
• prepared and sent out a UTM for Salamander.
• fooled around with setting up a *fund* for the boys through PayPal and added the necessary HTML code to the blog.
• updated Salamander's supplement spreadsheets and wrote a "Salamander update" narrative.
• forwarded the updated supplement spreadsheet and "Salamander update" to the medical professional(s) who needed them.
• paid a TON of bills (ranging from credit cards to various forms of taxes to Salamander's school bus fee).
• did groceries.
• bought myself a nice bottle of wine (of which I am now enjoying a glass.. LOL).
• picked up Potatey early from his school (and he was very happy about that).
• got a few business things done.

Oy...

And here I am wondering WHY I am tired.. I think I was just as busy on my *day off* as on the days I am doing PAYING work...

(it DOES feel good though to have gotten all this sh#t done).

Planning on another *day off* tomorrow....

AND ON A CLOSING NOTE, SALAMANDER'S ENERGY LEVELS SEEM TO BE RECOVERING A BIT. HE CONTINUES TO BE VERY TIRED AND SLUGGISH, BUT I DEFINITELY SAW AN IMPROVEMENT COMPARED TO THE PREVIOUS DAYS. IF TOMORROW BRINGS A SIMILAR IMPROVEMENT, THEN I THINK WE'RE *OVER THE BUMP* (FOR NOW ANYWAY..)

On Asking for Help...

I am terrible, no, HORRIBLE at asking for help.

I. DON'T. ASK. FOR. HELP.

EVER

And I am even worse at accepting help.
(you should ask one of my friends what I told the MTs that came to help me several years ago after I took a nasty spill on the pavement and busted both my knees open down to the (patella) bone and cracked my nose ... I stayed very polite, but I basically told them to 'take a hike as I was just fine.'.. )

There's something programmed into my psyche that immediately goes "You're a total f#ck-up. You should be able to do all of this on your own. What is this b# s# about needing help", whenever I even THINK about maybe, just, maybe asking for help.

I need to get over that.

For my boys' sake.

I've been asked frequently over the past several years by close friends and family "What can we do to help? Just say the word, it can be anything." And I always go into my "Oh, we're doing OK. I'll let you know if I think of anything" spiel.

And most of the time, I can manage on my own (money wise that is.. I have learned the hard way that I do need physical help in caring for the boys .... and I have been extremely lucky in that regard that I've been able to find wonderful people that are willing to do so, and who are now a very important part of our lives .... Of course I do pay them for their time.. Hello?? I don't work for free either...)

Right now, I am managing VERY WELL on my own (as my business has been just *humming* along). But it hasn't always been like that, and it won't always been like that (and I only recently was able to *get rid* of several very nasty looking credit card statements that are testimony to the "it hasn't always been like that" bit).

I realize, however, that the people that ask me *the question* truly want to help, regardless of whether I can pay for stuff on my own or not (or whether I can choke down my pride for more than 3 seconds.. LOL)

So (getting waaaaaay out of my comfort zone here), I set up a "Donate" button in the right hand column on the blog. It's linked to a fund I set up under my paypal account. And I solemnly swear that any contributions made will be used only, and ONLY, for stuff for the boys (I can use my paypal account at the place where I get the majority of the boys' supplements and medical tests ordered).

To all of who who have offered so many times before to help:
HAVE AT IT (or not). It's entirely up to you.

And if you do, know that you will have my eternal gratitude.

It Is So NOT Fair!!!!!

My blogger friend Jeanne posted this yesterday....

I read it late last nite (or early this morning, depending on how you look at things), and I've been thinking about Jeanne, her daughter, little Charlie, screwed up family dynamics due to a child with special needs pretty much all nite..

My heart is heavy today....

Jeanne, if you pop in here today, know that I am thinking of you. I wish I had words of wisdom to impart, I wish there was something profound I could say to Julie...

Added around 12.30 pm:
I typically don't go the 'It's not fair, it's not fair' route, as really, what's the point.. useless waste of precious emotional energy and all that...

But between what happened here on Sunday (the potential for these *metabolic meltdowns* to be some type of seizure activity has reared its ugly head again), the situation described by Jeanne, and a longish email I just got from a very dear friend who is having an absolutely HORRIFIC time with her affected son's OCD spiralling completely out of control , it's taking all I've got to not scream from the top of my lungs:

WHY DO OUR KIDS HAVE TO GO THROUGH THIS? WHAT IS THE F#CKING POINT? WHERE IS THE MEANING IN ALL OF THIS?


And I can't explain it.. but I actually feel a lot of *guilt*?? Why, with Salamander's underlying genetics, did he *get off*, relatively, lightly (not that we don't have our share of crap to deal with)? Why is Salamander slowly but surely moving in the right direction, and why are other kids, whose moms have done and are doing just as much as I'm doing (if not more), not progressing????

IT IS JUST ALL SO INCREDIBLY UNFAIR....

We're hangin' in, we're hangin' in... Salamander is NOT back to baseline, but he's better than yesterday...

Mucking Through...

Rough day.. and it ain't over yet.. Salamander is being a real trooper.. He's obviously feeling totally crappy, but is working his a$$ of in keeping his temper in check (and hey, who would blame him for lashing out? I wouldn't..). He realizes it's nobody's fault (at least none of those of us in residence here). He realizes that we're all working hard to help him, to keep him comfortable, to get him through this.

Truth be told, I am not handling it all nearly as well as Salamander. There is a LOT I can deal with, my capacity for dealing with B.. S.. is enormously large.

But I just hate, hate, f#cking HATE these GD *metabolic meltdowns*. He's in pain, he's miserable, and while I can do a lot by now to help him get through these episodes, I still, after all those years, cannot prevent them. And it's tearing me apart....

I am so, so, so MAD!!!! And there is no *smoking gun* in what caused all of this (beyond vulnerable genetics and a boat load of all kinds of environmental insults), there was no point at which all of this *suddenly* developed. It was a long, slow slide into the abyss over many, many years. So I have nobody or nothing to direct all that anger at.

Except for maybe all those A$$H#LE doctors that I took Salamander to during the first 6+ years of his life, and who dismissed him, dismissed ME as being hysterical, overanxious, manipulative, psychotic. They stood by and did ABSOLUTELY NOTHING to help him.

So true...

(and that's what I've been trying to do since I last posted on Friday... learning to surf the *waves* instead of getting wiped out... and lemme tell you, there's a whole lot of falling off the darn board involved...)


Added at 11:25 am:
Ay, another wipe-out by a *wave* I didn't see coming...
And there seems to be a lot of what's expressed going around on the various blogs.

Summer time with kids on the spectrum is just so incredibly hard. I think most of us do a really good job at staying in the moment, only comparing how our kids are NOW to where they WERE. But then that school break comes along.. and with that the family and friends get-to-gethers, the increased unstructured social time, seeing packs of kids running around all day in your neighborhood...

All summer long, we get bombarded with situations where you can't help but notice that, no matter how far your child has come, they still have far to go compared to their neurotypical peers... And quite a few of us have to face up to the fact that our child may never catch up, that there may always be *stuff* that needs to be dealt with...

I remember talking on the phone with a dear friend about a year ago, and he was asking how our summer was going (and last summer was a tough one, having just started Step 2 of Dr. Amy's protocol with Salamander). And I fell silent as I could not find the words to express how torn up I was over the fact that I HAD to push through the truly horrendous detox Salamander was experiencing, that -I- had to *do this* to my child...

He *got* how much I was struggling to find the right words... And all he said was: "It must be SO hard." It took all I had to not start bawling in response...

Yes, it IS GD f#cking hard....

(Salamander woke up *totally mito* this morning, and just crashed. SHIT, SHIT, SHIT. No 10 year old boy should have to deal with this kind of crap when it is a gorgeous summer day and all the other kids are running around having a ball...)

Still Kinda MIA...

Sorry.. still not much of substance from me.. Trying to bounce back from my brush/bout with heat exhaustion, tons of work to get done/get caught up on, an few unplanned emergencies...(also knows as *Life as Usual*)

Did stumble across this post by Michelle O'Neill yesterday.... And while I thought many times since reading it about leaving a comment on her blog, I just don't know what to say that doesn't sound trite. So I'll do my rambling about it here instead..

I can so relate, I have so *been there* so many times in so many different settings with Salamander. And this probably won't be a consolation at all to Michelle, but it wasn't until recently that I can actually *drop* Salamander off somewhere for a bit.. or that he can go *off* on his own for a while - like what happened in the water park was totally, totally, totally a NEW thing for him to do. And he's 10!!

Until recently, the thought of having to do stuff without me *there* to help him if needed would create such an overwhelming anxiety that he would either melt down or shut down. And *dropping him off* for a little while in a new setting, new activity? Foggetaboudit... Momma better stay for the first 2 to 3 sessions, and then the *weaning process* may be able to start. Same goes for birthday parties and other social gathering. Salamander needs to know that I am *there* in case he gets stuck (almost like a security blankie.. LOL). I have been able to *get around* the social awkwardness of staying at birthday parties etc by *volunteering* to help. TG I have yet to meet a parent who will decline having an extra set of hands, eyes, ears, feet, mouth etc in keeping 10+ energetic 10 year old boys *in line* (plus it typically alleviates any *food related anxiety* on behalf of the hosts too.. as most of them simply cannot get their heads around Salamander's dietary restrictions).

And oh, that terrible auditory sensitivity/sensory integration dysfunction curse... I am so glad that things have gotten so much better for Salamander in that department. But it has taken (and continues to take) a ton of work. We did a very intense and very lengthy AI/OT program (spread out over many many months for many hours a week). Also, GABA/glutamate balancing as well as sufficiently high magnesium levels are key for Salamander (and Potatey too) in keeping the auditory systems regulated (and every time, during detox or other situations where the whole GABA/glutamate balance is *off*, I see a flare in auditory sensitivities). Salamander continues to schlepp his MP3 player pretty much anywhere. By now he has gotten pretty good at recognizing when noises etc start to bother him. When that happens, he plugs himself into his MP3 player and just 'zones out' for a while. And then, when he feels regulated again, he *unplugs* himself and will join the fray. That too has taken a lot of teaching and coaching.

And ah, participating in summer camps.. I think I've gotten lucky in that respect that our town runs a "Challenger Camp" (and kids have to be *nominated* by their SPED TEAM to be eligible to be included; quite a few of the public school teachers work at this camp for the summer, and all staff is aware of the kids' particular sets of challenges. I even suspect that, for some kids, specific staff is briefed on IEP requirements and all that). Salamander is participating in this particular camp for his 5th summer now, but it has taken a lot of hard, hard, hard work from all parties involved to get to a point that things now run, relatively, smoothly. We continue to have bumps and upheavals and situations that need to be addressed, so it's never a *drop off and he'll be just fine* situation. Too bad he's only eligible for this camp for one more summer next year.. I have no idea what I am going to do after that (as for whatever perverse reason, summer, as well as Xmas, tend to be the busiests times of the year for my business. I think it's because, at the companies I work with, during those times a lot of staff is out (or less motivated.. LOL), so they bring in extra contractors to get the work done..)

Another thing that has saved my butt for the past 4 summers (as well as this one) is *stumbling* over the wonderful Mrs. C. R in that first horrible summer after Salamander was diagnosed.
C, I know you read this blog. I love you and I am absolutely serious.. I do not know how I would have gotten through these past summers as well as the prior school years without you. You just *get* Salamander and have been such a huge help to him, to me, and a lot of other people that work and interact with Salamander. It was absolute *Divine Intervention* that we found each other.

As a closing comment, as I need to get going on work stuff, I worry every single night, after Salamander goes to sleep whether I do enough, whether I protect him enough, whether I can protect him during the, undoubtedly, tough teenage years to come. And I don't know.. I don't have the answers. However, I think that all of us moms that are so involved in our special kids are doing what we can to protect and that we all have an astute awareness of our children's fragility. I am terrified over Salamander's upcoming transition into Middle School (TG I have another year). He too is so fragile (although he is *toughening* up a bit) and he is no where near as savvy and sophisticated as the *average* 10 year old. All I can do there is to make sure that Salamander knows that he can talk with me about anything and to give him plenty of opportunities to talk whenever it suits him (regardless of whether that's convenient for me.. and let me tell you, finding *alone* time with either boy is an enormous challenge..).

And do I worry about how Potatey experiences all of this *insanity* and how he copes and gets through this relatively unscathed? Hell, yes... But there too I do what I can...(and so far he is one of the most *well adjusted* kids in his entire pre-K/K class, so I must be doing something right..)

Sorry, nothing of substance from me today... Me thinks I have managed to develop a borderline case of heat exhaustion (due to working long hours in a very hot office/house yesterday, not drinking/eating enough, and then spending several hours in a very hot kitchen cooking last nite), so I'm not feeling too great (as in feeling weak, nauseous, pounding headache, swollen hands and feet, can't concentrate for more than 2 minutes..)

Yes, yes, I am drinking lots of water today, took up residence in the attic with a monstersize AC unit blasting at full force. I'm going to take the 'easy way out' for the boys' dinner tonite (as I can't bear the thought of spending several more hours in a hot kitchen today) and will get them some sticky rice and chicken satey take-out from a local Thai restaurant (this particular place knows all about the boys dietary challenges, and the kitchen staff has been absolutely awesome in accommodating all my 'weird' requests.). And I am going to try and take a nap before I need to leave the house to go get Potatey from his school (the wonderful Mrs C.R is taking care of Salamander for the afternoon and she'll drop him off at home..)

Then hopefully by tomorrow I will be ready to swing back in the saddle and go at it again (as the usual stuff and my work deadlines aren't exactly going away when momma is out of commission).

Please do read this post. Replace Drama Mama's Ms. M by Salamander and Roxie by Potatey, and she is describing exactly what I am feeling every once and a while...

SURPRISE!!!

This is what I am seriously considering getting for the boyos. Our current playset is old, crappy, about to collapse, and I don't even want to *THINK* about the materials that were used (wood turns green in the rain.. yup, treated with arsenic).

My business has been running really well and I've made a decent chunk of cash since April. So, while of course there are 18 million other things that I should probably be doing with the extra money, my boys deserve a treat.

I'll keep you posted (as I'll have to conn the company that installs these things in to removing the old junker for me.. of course I'd be paying them for their time and efforts..)

Oh, family and close friends? If you feel so inclined as to *contribute*, give a shout (I have NO shame..LOL)

Precious Moments...

[and as promised, I am not letting anybody take another precious moment from me..]

Salamander really has been taking tremendous ownership of his 'How am I doing' chart. Now we haven't tied him getting a sticker or small reward to any specific actions, we purposely kept things a bit open ended, as the entire chart is based around 'taking ownership'. He's 10 now, and there is a lot of stuff he CAN do (but doesn't always want to..LOL). Like getting himself in and out of the shower without help, getting dressed, throwing his dirty clothes in the hamper, bringing his dirty dishes to the kitchen, putting his shoes/backpack etc where they belong, executing the 'get ready for camp 'routine on his own WITHOUT me reminding him, prompting him, coaching him every step of the way (e.g., all those essential self help skills).

You could say that this is becoming the summer of 'weaning Salamander off from using momma as the prosthetic frontal lobe' (similar to last summer being the summer of teaching Salamander age appropriate play skills). And boy, IT IS WORKING. He is doing SO MUCH entirely on his own, without prompting. Sure, he'll ask 'mom, how about I do X now?' or 'is it time to do Y yet?", which is fine. My point is that he knows that X or Y is coming up and he is anticipating and planning. And he is self motivated. HUGE BIG STEPS.

He is also learning that, just because you earn your reward for a given day, things may come up that prevent you from 'cashing' a particular reward. And that that's OK, as the reward is 'in the bank' and there will be an opportunity on another day. Delay of gratification. ANOTHER HUGE STEP.

When dropping Salamander off at his camp this morning, I popped out of the car real quick to have a chat with one of the lead counselors. And she was absolutely GUSHING over him. How easily he was adjusting this year as compared to prior years (he's been going to this particular camp since he was 6), how much more mature and in control of his emotions he seems to be, more willing to take ownership of conflicts and then work toward solving them, less 'on edge and ready to combust at any given moment." WOOHOOHOOHOO!!!

(also, neat little tidbit. I've always, in prior years, brought special snacks in for Salamander, like the EnjoyLife cookies. Not so this year. Apparently there are a bunch of kids on special diets now, so lead counselor simply went out and bought a supply, and then checked back with each of the parents to ensure it is *the right stuff*. YEAH. Power to the Diet Nazis!!! LOL).

Potatey is having an absolute blast at his summer program too (he's covered from head to toe in scrapes and bruises; all as expected for a healthy active 5 year old boy who is up for anything). I had an opportunity to watch him run around with 12 other pre-K/K kids hooting and hollering while they were running through the sprinklers. He is SO AMAZING. So much smack dab in the middle of the whole social scene, *directing* the play activities, making sure all are included. He is just so incredibly, what shall I call it, PRESENT. Not in an 'in your face, bossy, do what I tell you to do' kind of way. He is just 'all there', aware, making connections, full out participating in life. Which is so awesome to watch....

I know I still need to get my 'water park adventures' up. I will once I have a free moment. Right now, I gotta switch into work mode.

Later..

Teachers Are Noticing It Too...

It's not just those *kooky parents who need somebody to blame for their horrible parenting skills* who are noticing that *not all is well in Paradise*. Read this *from the trenches*.

I can't help but wonder if *atypical development* will become the new *normal* (I HATE using that word, but it serves a purpose here). And how long will it be until we have utterly stressed out teachers and aides leaving the school systems in droves? And then what will happen to all of those affected kids?

Potatey's a Doll...

Yeah, yeah.. another one...

Potatey just came home from his school. I heard the front door slam and a 'Mom, mom, where are you mom, I have something for you mom'.

"I'm in the kitchen, sweetie" (where else would I be eh?)

Potatey bounces into the kitchen and hands me a HUGE PURPLE flower he picked from the flower *wilderness* (sorry, can't call it a garden anymore) in front of the house.

"Put it in your hair, mommy."

"Ooooh, you look JUST like a Hawaiian princess."

This kid knows just what to say to make me grin like a loon.


OK, so I may have absolutely lost my touch with the adult variety of the male species, but I still do pretty good with the pint sized inhabitants of *Planet Mars* ...

Autism Survival Kit...

As I was rooting through my backpack trying to find one of my many memory sticks, I found the "Autism Survival Kit" that somebody had given to me at AutismOne in Chicago (the *kit* is put together by Unlocking Autism).
Here's what's in it/what the attached card says:


Puzzle Piece: A reminder that you are an important piece in the recovery of your child.

Rubber Band: For those times when you must stretch yourself beyond your limits.

Cotton Ball: For those many occassions when you are offered parenting advice.

Sweet & Sour Candy: Remember, each child is different.

Tootsie Roll: Always roll with the punches.

Mint: A reminder that you are worth a mint.

Rope: Just in case you get to the end of yours.

UA Hotline Number: When all else fails, call for help.


This DID put a smile on my face, so I don't think I'm in need of that UA Hotline Number just yet....

This too (feeling this down and in the dumps) shall pass...

On Being Sad...

Blech, I had another one of my 'devastatingly sad' dreams earlier this morning (those of you that know me well know what kind of dream I am talking about here). I woke up at 5.35 am (YES, I SLEPT IN), just as the dream was ending, feeling totally 'deep down to the core of my soul sad' and I have not been able to shake that feeling yet (TG kids are in school and camp today, so they won't have to deal with moopy momma). None of my usual strategies to kick myself out of my *pity pitt* are working. Maybe a sign that I just need to 'be' with the feelings for the moment and not try and 'fix things'....

It's been an up and down kinda 3 days.
The fireworks on the 3rd were really nice (despite the little *dilemma* leading up to it);

the 4th was a crazy whirlwind kinda day (boys did really good though and have a great time overall - and in the end THAT's what really matters);

the 5th was a GOOD day (except for a very scary experience involving Potatey and wandering the streets on his own at 8 am in the morning!! Trust me, Potatey is now CRYSTAL CLEAR that, under NO circumstances doing this is EVER A GOOD THING. I completely *get* why he did what he did, but he broke a key SAFETY RULE (and there are NO compromises on safety rules);

the 6th (yesterday) was a bit of a mixed bag. Potatey wasn't feeling so good (his tummy has been bothering him and he's been quite anxious), and Salamander had his moments too (pica is flaring again..). Of course there was the awesome 'I am taking ownership for my blow-up' development - I'll blog more about that when I'm in a better frame of mind)


It's just that, well, while the boys overall did good, there were just way too many of the 'broken promises, unfullfilled expectations, I need to explain the same sh#t over and over again to the boys' dad, and no matter what I say or how I say it I'm the big bad biotch' moments ....

Oh yes, if I had been so inclined this weekend, it would have been really easy to write Part III and Part IV of what I started here.
You know how people say "if you want to get a good sense of how your SO is going to treat YOU a few years down the line, watch how they treat their mother and female relatives?" Well, THAT, my dears, should have been a big fat warning sign and should have sent me running in the other direction...
However, truth be told, I have been FAR from a good daughter, sibling myself. And when my warning bells SHOULD have gone off, I was far too busy being a total selfish, self absorbed biotch who only cared about money, career and *sticking it to the world* (TG I woke up..)


Me thinks I need to do what some of the other moms do: schedule a mental breakdown and have a hysterical crying jag. Today, however, is not a *safe* day to do so. (Note to self: write in on July 9th, from 10 am till 10.05 am "Mental Breakdown".. LOL)..

Off to take a looooong shower, maybe a drive to the Starbucks for a nice cup of coffee and then bury myself in work (as I've got plenty of THAT to go around this week; another deadline on Friday).