Friday, May 29, 2009

Give Me Strength..

It's been a little over 2 hours since "The Arrival" and my teeth are already on edge...

Their flight was delayed, so they got the house after the boys' bed time, Potatey was already sound asleep, Salamander was drifting off.. but as their arrival at the house was accompanied with a TREMENDOUS amount of noise, Salamander got startled and became agitated and I stayed with him until he had settled down again.

When I made it downstairs (no, I didn't immediately run downstairs to do the meet and greet thing.. I was busy with Salamander) I was greeted with a 'Oh, you are actually here? The house was so quiet that we thought you had gone off and were busy doing all those things that you are involved in these days."


First of all, I would NEVER EVER leave my boys alone in the house unattended.

Second, the TV was on as I was recording a show for Salamander (old TV, old VCR system. TV must be on when recording. No, I don't have DVR or TiVo).

Third, "gone off and were busy doing all those things that you are involved in these days."?? (oh, I know what THAT refers too..]

I have no words..

I have to hold on to the following mantra until Tuesday afternoon:
"I don't owe anybody an explanation or justification for how the boys and I life our lives."

But oh boy, the *fun* the next several days will bring.

Salamander ended up with an obscene amount of homework that needs to be done by Monday. He has a BIG project that is due on Monday that we really should have gotten started on last weekend, but alas, I wasn't here to help him get started. And this whole week has been messed up.
He has school work to make up for the days he missed this week.
He also had a project that was due today that we completely spatzed out on, so he, and other kids who forgot that same project, were assigned extra work to *teach them to remember deadlines* (we'll see about THAT on Monday..we completed this missed project this afternoon and emailed it to the teacher).

And then I discovered that Salamander's performance in his 5th grade musical is THIS UPCOMING Tuesday evening at 7 pm - and that his costume needs to be ready by Monday for Dress Rehearsal.

And then of course there is the usual weekend stuff...

Well, we'll do what we can...Me thinks a good opportunity to get the grandparents involved in helping out..

Interesting Stuff...

happening here..

So Salamander got sick on Wednesday morning, and he was pretty much out of it for the remainder of Wednesday and part of Thursday night. I am pretty sure it was some type of detox triggered by supplement tweaks I have been making since Sunday evening (but don't have the test data yet to back that up.. UTM on its way to the lab).

I let him miss school and sleep in yesterday and ever since he woke up yesterday morning at 9 am he has just been in this fabulous place. I can't completely put it into words just yet, but he's different. Happy/content/at peace different. Language operating on yet a higher level. When I was talking with him yesterday, it was like I was talking with Potatey instead of Salamander.

Cognitively Salamander is operating on a different plane too. Just so very aware, so very tuned in, so BRIGhT. More so than he has been in the past several weeks. This morning he woke up in a really good space too (it was a B12 shot day, so that did trigger some anxiety, but he got over it very quickly.. much quicker then previously..)

I have no idea what to contribute this to (I have my thoughts though, that I will keep to myself for now). I do know that yesterday was special, a gift to be such close witness to the awesomeness of Salamander.

I also have no idea if it'll hold. It doesn't matter. Getting this glimpse is something that nobody can take away from me. And if it goes away, I know we'll get it back.

Middle School placement meeting yesterday afternoon went well too. More on all of that later. I need to get started on my lengthy To Do List. Paternal grandparents are coming in tonite for a long (looooooooong???) weekend visit...

Wednesday, May 27, 2009

Today's Lessons...

"For when the Universe speaks, its voice can come from the most unexpected places."

That, and ...

"Take a deep breath before (re)acting... and don't get stuck in your own preconceived notions"

A wise woman told me on Sunday afternoon that being reactive is like cutting your own bangs and realizing that one side is higher than the other. So you start cutting to even things out, and you cut some more, and then some more.... Well, you get the drift.. Being reactive just never ends well..

Tuesday, May 26, 2009

More than Words...

Sorting through my emotions..

Trying to find the words to describe what being amongst 'my own tribe' these past several days in Chicago has meant to me..

And I can't.. at least not yet...

So incredibly "I-can't-find-the-right-word" for an awesome group of incredible *sisters in Yasko* (and a few select *brothers in Yasko*) who have been and continue to be there for me.. no questions asked.. no judgments made.. ever.

This same group has also never EVER made me feel like I needed to pass a 'severity of autism' or 'your child never lost language so you don't know what it's like' or a 'what do you mean, you can't pinpoint which vaccine did this to your child' test in order for my concerns for my boys to be taken seriously (and the same cannot be said for several other biomed groups that I've crossed paths with).

You see, I have never really been (or will ever be) a card carrying member of any of the gazillion persuasions that exist within the autism community (zealots on either side of the Great Divide scare the crap out of me. That being said, I do firmly believe that the current manifestation of "autism" is a man made disease...but at the same token, I just cannot support ALL treatments promulgated by the DAN! Protocol..).

All I ever wanted, and all I am driven by, is for MY boys to be the best THEY can be. Regardless of whether they have the "right" autism diagnosis", or "whether they can talk or not". After all, the metabolic blocks that my kids walk around with have not just caused a variety of challenges at this point in their lives, but may also present them with a different set of health challenges later in life. These metabolic blocks need to be supported/treated, regardless of DSM-IV diagnosis status. And this particular group so gets that.

Thank you..

Monday, May 25, 2009

I'm Back.....

I got back yesterday.. boys were/are good.. house was/is trashed (hey, I'll take it that way instead of the other way around).

My heart and soul are very full.. met so many amazing people.. had so many amazing conversations... immersed myself in the energy of people who believe in what I do, who believe in me, who think I'm "all that and a bag of chips". I needed that so very very much...

I do apologize for going MIA while in Chicago. I tried like heck to get a good web connection, and to find time to blog. Couldn't get either to come together...

Personal highlight for me? Lots of incredible face time with Dr. Amy Yasko. Don't know how THAT happened.. I didn't seek out for this to happen, it just did.

There are no words to express my gratitude for what this extremely generous and caring soul has given (and will continue to give) my boys and me (believe me, I tried.. she listened to me stumbling over my words, put her hand over mine, looked me in the eye and said "This is what I do. And you are giving back to me and the community at large by sharing how well your boys are doing.").

There is so much to write about.. but I am a little strapped for time. I'm off now to take care of 18 gazillion things, and once I've done that, I'll be back and will write more.

Love... Just love...

Monday, May 18, 2009

Crazy busy with prep for my Wednesday eve departure.

If you want to get together at AutismOne, email me or send me a tweet through twitter. Alternately, you can leave a message for me at the AutismOne conference hotel too.

Somehow, we will all find each other. That' kinda how it works at these conferences. Ill be *wearing* my boys pics on my conference badge.

Thursday, May 14, 2009

My Apologies...

but I have officially hit *overload*.

I had a (mini?) mental breakdown on Tuesday afternoon.. compounded by the fact that I grandiosely fell off the gluten free wagon on Monday, which all resulted in one

Big Mucking Emotionally Fessy Howl-Out

from which I am only slowly finding my way back (ask dear Tori from Lend4Health what I did last night..).

Something is going to have to give for a bit.. and so sorry, but it's gonna be the blog. I fully expect to be back up and running during the second half of next week (as I'll be at AutismOne in Chicago then.. and you can bet your behinds that I'll be blogging from there).

But for now my attention needs to be directed towards the following:

Salamander continues to have some *funky stuff* going on. Part of it is *typical* (pre)-teen stuff, part of it is that last week he was constantly being exposed to food cross contamination, part of it is anxiety as this week is state mandated (MCAS) math testing, part of it is the B12 *bath tub* ever so slowly filling up (yes, the HB12 shots are starting to take), part of it is pollen allergies, part of it is anxiety because mom's gonna be gone part of next week, part of it may be increased detox (especially viral), and part of it is "I just don't the hell know". I need to focus on eliminating and addressing the various parts, as I will be gone part of next week.

I will be going to AutismOne in Chicago next week. I am leaving Wednesday eve May 20th, as soon as the boys are sitting down for dinner (my flight is at 8.25 pm). I will be returning on Sunday May 24th round dinner time. And yes, that means I'll be away from them for 4 days and 4 nites. For 2 full school days. For almost 2 full at home days. For 4 breakfasts, 4 lunches, 4 dinners, many many snacks, many many supplement & medication administration sessions, and for any and all *rumble* situations that may arise (at school and at home). And yes I am worried about that. Very worried.

I will go, I have to go, no I NEED to go to Autism One. But please, no comments along the line of 'they'll be just fine, what can happen, you just need to trust their dad that he'll do the right thing'. Been there, got burned many times, don't need
any more t-shirts. I need to prepare as much as I can ahead (food & supplements & meds), get whatever back-up troops I can find on board, pray and hope for the best, and be prepared to go into full bore damage control when I get back (maybe one of these days I'll describe how I found the boys & the house LAST year when I returned from Autism One.. it was (f)ugly..). So I need to get busy on meal planning, supplement & meds planning and make it all as simple and idiot proof as possible.

There is an utter and complete breakdown in communications between the boys' dad and myself on any and all things related to the boys. I don't know how to get beyond the blocks - all I can say that it is utterly impossible to have a conversation with a person who hangs up on you, walks away from you in a face-to-face conversation, who won't answer your emails, who grabs his Blackberry in the middle of a conversation, who counters everything you say (no matter how you say it) with "That's not true. That's not how it is. You are imagining things. It's all in your head. Well, that's your interpretation". Or when presented with evidence to the contrary says "Well, you never told me that before. I don't remember that. I never got that information.' Or who, when there are others presen,t will agree with and to prety much anything but will ignore any and all commitments made once those others exit (oh yes, all that lovely passive aggressive and *gas lighting* stuff).

Things have gotten petty, and it's affecting the boys, especially Salamander. It'll probably require some type of counseling or mediation to move forward. I don't see yet how, in what format, or whether it will have any effect. I need to find time to think about it all and get my head clear while I'm in Chicago.

I am running very behind on Salamander's transition process from Elementary school to Middle School. This was supposed to have gotten started in February, it is now May (delay on my end is purely due to the never ending stream of illnesses we've had here). I found out about some very disturbing school system revamp/reorganization plans this morning that may have a huge impact on Salamander's program as it currently exists as well as on future programs within the Middle School and High School. I need to get all the dirty details, need to turn the Middle School upside down and then go from there (and God forbid if Potatey may ever need some type of assistance in the just never know).

And then of course there's Potatey who needs my attention. There's the usual stuff that's involved in keeping this zoo running. And then there's paying work that has just stepped up. And then there are two volunteer things that I've gotten into that need some of my time.

Yes, plate is full, and something is going to have to come off. I will be back...

Monday, May 11, 2009

Looking for 74 Remarkable People...

[Make THAT 57...]
Hi there.
Yes, I was directing that at you.
We are looking for 74 remarkable people.
What do these people need to do, you ask?
Very simple. We are looking for 74 amazing people to each contribute $10 towards a loan.
What is this loan for, you ask?
This loan is to help a beautiful boy named Michael achieve better health.
Yes, we are asking you to consider contributing what you pay for a typical lunch toward a loan which will help a child feel better. Will you please pop over to his profile and check it out?
Thank you!!

[P.S. And it's a loan, so you will get your money back..]

More Seizure Activity??

Salamander may have experienced more seizure activity this am. Just before we left the house for school, he was sitting in a chair as I was helping him tie his shoes. I felt his body go all slack on me, and when I looked up, his eyes were rolled back in his head.

As soon as I called his name, his eyes rolled right back, but he looked at me kinda confused and unfocused. Then his eyes rolled back again, and his face went slack too. Again, he *recovered* when I called his name. Each episode didn't last for more than half a second.

I asked him if this eye thing was something he did to just horse around with me, or whether it happened on his own. He giggled, gave me a goofy grin and shrugged his shoulders.

So at this point, I don't know what I saw was real or him just messing with me. But considering what I saw last Monday, considering his complex neurobiological situation and considering the fact that his dad has a seizure disorder, I just can't be vigilant enough...

I alerted the school nurse as to what I saw.. keeping it somewhat light (as in "let's not start scrutinizing every little thing he does") while getting the pertinent points across. The nurse promised that she would keep an eye on him.

I also told Salamander, prior to dropping him off at school, that if he starts getting a headache, has trouble speaking, sees or hears *funny things* or if he has trouble seeing or hearings, or if his muscles don't want to do what he wants them to do, to go find help. Salalamander was spacey and a bit out of it on the ride to school, but by the time we got to school, he had *snapped back*.

I don't really know what to think at this point. I had shared last week's Monday and Tuesday's shenanigans with Salamander's CST. She didn't think that what happened was seizure related, but she did say that she wasn't sure and that 'if it's seizure stuff, you're gonna see it again soon.."

For now, I'll keep a close eye on things. It's a good thing that Salamander really never is completely alone (at least not during his waking hours..).

Sunday, May 10, 2009

Sorry.. not much in the mood for writing...

Friday was a good day (especially as I made great progress on a really FUN paying work project I just started). Yesterday was a rough one.. on many, many fronts (both boys were very, very off), and today so far has started out rough too.

I'm tired, I'm frustrated and yes, I am angry that I am always, always, always left *holding the bag* on the tough stuff (and I have to work HARD at reigning that anger back in, as I don't want to project on the boys, as it is most definitely not THEM I am angry with.. ).

I mean.. when will it be MY turn to be the "Disney parent" and do all the fun stuff? There are just not enough hours in the day to do all that NEEDS doing, and I want to do fun stuff for part of the time too...

I mean, boys & I worked our butts off for many years to get to where we are now. And now that they are doing so much better, now that doing stuff with them has become so much easier, the *absentee dad* is swooping back in to get involved [and to take CREDIT!!].

Yes, I realize it's important for the boys that their dad is involved in their lives.. but man, where was he all those years when things were infinitely tougher. For years he refused to take them anywhere. And still, at the first signs of *rumblings*, he'll either back out of a promise, or will turn back around to drop 'em off with me so I can deal with the situation at hand. And he is extremely selective on what he actually wants to do with the boys..

Ya know what, the next person who tells me (especially today) how *lucky* I am that the boys' have such an *involved dad* (oh, he puts up a good show when people are watching) gets an ear full....

Anyhow.. nuf belly aching. Time to go look for my 'glass is half full" attitude....

Happy Mother's Day...

Wednesday, May 06, 2009

Curt Schilling apparently has a son who was diagnosed with Asperger's Syndrome about 2 years ago, and Curt and his wife are now becoming quite vocal about the challenges, trials and tribulations. I've also been told that he has thrown himself in fundraising to create new or expand existing summer camps for kids with Asperger's (sorely needed).

I also bagged a new paying gig this morning.. will result in a nice full work calendar for the next 2 to 3 months.

Off to start pizza prep for the boys' dinner for tonite..

Sorry, things turned *loco* after I posted Monday's 12.45 pm update. Salamander developed a fever, got really lethargic and spacey, lots of other funky things too. He ended up being out of school yesterday as well.

He is much, MUCH better today and back in school. Having had a few moments to reflect on what happened over the course of Monday and Tuesday, I'm thinking "metabolic shut down & purge* and maybe even some seizure activity...

More details later.. I have lots to get caught up on, work stuff that needs to happen, cooking, laundry, Salamander has CST this afternoon, Potatey has soccer practice tonite.. so I have to get going.


Monday, May 04, 2009

And The Wheels...

Here we go again...

Salamander woke up early this morning with tummy troubles. This morning he woke up congested, with a cough and a drippy nose.

Do I think he's got the *oh so terrifying and deadly* swine flu?

Hell, no

Will I need to keep him home from school and schlep him off to the doctor's to get tested for the swine flu?

Hell, yes

(school has already declared that anybody with *symptoms* needs to stay out of school and stay home for at least 7 days - unless there's proof to the contrary that the affected child does NOT have the swine flu)

So we're in for a fun day..

What do -I- think is going on? Environmental allergies, that's one piece. I also started some additional gut work for Salamander on Friday nite, so I think there's a good dollop of die-off + detox in play too (very smelly BMs and gas; and he always always gets congested when detoxing).

But that's just my very well developed mommy sense. I can't use THAT as proof with school though...

12:45 pm update - Salamander is fine. "Allergies or he's developing a cold" (no suprises there). Got a doctor's note so he'll be good to go back to school tomorrow. Funniest part? When the doc asked Salamander if he has muscle aches (he almost ALWAYS has muscle aches due to the mitochondrial issues). So of course he says "Yes"...

Sunday, May 03, 2009

Why, oh why...

Stumbled across this beautiful bakery last night. Gluten Free, Casein Free, Soy Free... even Corn Free.

I got all excited.. and then I checked ingredients for the various products..
Cottonseed oil, natural flavor emulsion.

Why, oh why, oh why... I know it's possible to make tasty stuff without these ingredients.....

OK, so the next person who whines to me about how scary this swine flu thing is GETS IT!!!!!

1 in 5 U.S. kids that have *something* going on (autism, asthma, allergies, ADHD, learning disabilities, mood/behavioral disorders, diabetes, childhood cancer, and so on and so forth) - THAT is scary.

600+ people WW have been diagnosed so far with swine flu [7.15 pm - so fine, rumor has it that there are now 800+ confirmed cases. Still...] How many kids were diagnosed with *something* in that same time frame?

The swine flu is just a friggin' flu, people. Let's keep some perspective.

[and I DO know what I'm talking about - I did the *regular* flu this winter, remember? And several sinus infections, and bronchitis, and a cancer scare, and pertussis(?)/bronchitis(?)/mono. Yes, nursing everybody thu it sucked. But we did it]


This I Want ...

Somewhere.. on my skin..
The Threefold Mother Goddess: Maiden/Mother/Crone
Yes, I'm talking Tatoo.
I don't know yet how, I don't know yet where. But I WANT.
No, I am not having a midlife crisis. Quite the contrary - I am slowly becoming who I am meant to be.
This symbol has been appearing in my dreams for at least the past three months. I've stumbled across it in three different settings in the past three days.
The Universe has spoken

Saturday, May 02, 2009

Totally Random...

A day that started pouring rain turned gorgeous.

Boys are having a good day (now of course the moment I write that, they'll start killing each other.. LOL)

Got myself a steam mop yesterday and am luvin' it.

Want to see "Wolverine" again (Hugh Jackman was tweeting quite a bit last nite thanking fans for all the nice messages he got. Yes, he's on twitter. And yes, I follow his tweets. And yes, his profile picture is gorgeous. So what?)

Started a pot roast for dinner and my house is smelling delish.

Got great pics of the boys today and sent them to my entire circle of friends (yes, I bragged. So what?).

Finally booked my flights to Chicago for AutismOne (swine flu travel advisories be damned). Arriving in Chicago late on Wednesday May 20th, flying back home on Sunday May 24th (and yes, already hyperventilating over leaving my boys for that long...). If you're going (and I know that quite a few of you are), email me a phone number and we'll get together somehow.

I'm going to sit outside, while wearing SPF 70 sunblock as I have a raging case of sun allergy.



I think I just hurt myself laughing so hard.

Picture my two bandits, in the playhouse in the backyard. Signing from the top of their lungs and shaking their booties:

"I'm a barbie girl.
In a barbie world.
I am made of plastic.
Isn't that fantastic"

[don't ask me WHERE they go that.. School bus, school play ground?]

Friday, May 01, 2009


I've been wrestling for a few days now with a sticky (paying) work challenge. I will eventually see my way out and come up with a solution that works for all parties involved, but this morning I ended up hopelessly stuck. The pieces of information I have don't make sense.. something is missing.. but I can't seem to get to that missing bit.

What is not helping matters is that one of the key players is taking my questions, my seeking for information. very personal (while, as always, I have been careful in setting a 'neutral, I'm just trying to get the full picture' stage), and has become very pigheaded and stubborn. And while most of the time I can maintain the professional facade and work around this kind of stuff, this person is somehow pushing my buttons and bringing out every last drop of pigheadedness and stubbornness I posses (and trust me, I have LOTS. I've just learned to keep a lid on it in my work life).


A rather rude email came in earlier this morning, and I was about to reply in kind. Thank goodness, what little bit of rational thought I still had left kicked in and a voice in my head said "Stop it. Drop it. Get out of here."

So I did. I closed my computer. grabbed my purse and car keys and left the house. [no, I did not abandon my kids.. they were in school]

And ended up at the movie theater watching "X-Men: Origins Wolverine" [I had been dying to go see that one.. do you all have any idea how long it's been since I've gone to a movie theater by myself for a *grown-up* movie? Neither do I.. it's been a long, long time]

Well, "Wolverine" is.. I only have two words - Holy Sh1t!!!! (and I loved every minute of it..)

[Salamander has been begging me to let him see it with his friends. First, it's a PG-13 movie. And now that I've seen it myself, three words - No Wucking Fay!!]

To my SHOCK, there was a very young couple in the audience who had a little girl with them who couldn't have been more than 3 years old. Yes, a 3 year old at a very intense, PG-13 movie.

And I can't help but think: "I may have made a lot of mistakes with my kids, may have taken more than a few wrong turns, may sometimes embarrass the sh1t out of them, but I have never, ever purposely, or through carelessness, placed them in situations that could be hurtful to their mind, body or soul. Never. Ever"

And I find myself once again getting angry. Not at the couple. They will have to deal with the consequences of their decisions one day (or not). No, I am angry because on so many occasions and in so many situations I am made to feel (by certain people) that every single decision I am making for and with my kids is all WRONG, that I am harming them, that the person I have become/am becoming is all wrong.

And it hits me why I am having such a hard time with this person in this particular work situation. This particular person too, projects the, what I call, 'homo superius & victim' vibe, the "I am completely right, you are completely wrong, YOU are all wrong and woe is me, the victim of your WRONGNESS."

Bottom line I am projecting into this work situation, onto this particular person a personal issue that I obviously need to sort out. At least, now that I realize this, I can refocus in the work situation on the actual issue at hand - the sticky work challenge.

The personal issue won't be quite as neatly and easily brought back to basics. Is who I've become, who I AM becoming that wrong? Am I that wrong in how I approach things, in the choices I make, in how I choose to live life?

Certain people seem to think so. Other people (that truth be told matter a heck of a lot more to me) seem to think that I am pretty OK the way I am. What I need to become clear on, what I need to decide on is what -I think, and then act accordingly..

And all that from going to the movies eh?

Salamander Writes More..

So yesterday was "Poem in your Pocket" day. Together we had picked out a wonderfully silly poem from the book "My Hippo has the Hiccups" (I have found poems and rhymes to be a GREAT tool for showing and practicing the inherent *music* in language.. )

But of course, in *typical* (?) ADHD/executive functioning deficits fashion, somewhere between getting on the school bus and arriving at school, the poem went MIA.

But in very UNtypical 'ADHD/executive functioning deficits/gripped by anxiety and don't know what to do' response, Salamander then decided to write his own:

Up in the morning sky
That's where birds fly
While singing songs
Red, Blue, Yellow, Black feathers..

Salamander has a writer's/poet's soul.. and I am so incredibly privileged to be witness to this part of him emerging.....

And on a related note, Potatey definitely has an artistic streak too, but his is more of an impish nature. I just walked into my downstairs bathroom... and was greeted by a HUGE BIG smiley face... drawn on my bathroom mirror.... with strawberry toothpaste....