Wednesday, April 30, 2008

Be prepared to cry...I did....

First tears of sadness

then tears of joy..

Tuesday, April 29, 2008

Message From the Universe??

So I've done a lot of reading today.. all kinds of different reading for all kinds of different reasons on all kinds of different topics...
And the take away message was that I "am exactly where I need to be on the long winding road of life, doing exactly what I need to be doing"...

A powerful message.... and for those moments today that I was truly present to this, something unclenched and shifted inside of me....and I felt at peace....

(but then of course that oversized, overactive brain of mine would click back in and rattle off my mental to-do list.. and instead of staying with the "doing exactly what I need to be doing", I'd go screaming off in "look at all the sh#t I need to get done, and I am running so behind" hell again....)

Oh Serenity, Serenity... where arest thou, Serenity...

This 'strong girl that can handle anything and everything, and who doesn't need any help from anybody' vibe I project??? It's armor, people, to protect a delicate (and already much wounded) soul......

I am so tired of always having to be the strong and tough one, the protector, the fighter, the one that takes care of all the problems and issues ....


this guy, I like this guy a lot...

In Need of a Change...

So I changed the template for my blog today.... call it Spring Fever, call it Searching for Something, call it Whatever...

Do let me know what you think...

Monday, April 28, 2008

One (as in 1) Potatey + 1/4 tablet SAMe =

Energy levels resembling this little guy

[yes, Hammy the Hyperactive Squirrel from Over The Hedge...]


I'll be dropping the 1/4 SAMe to once every 4 days instead of every other day...

Please Give Me Patience...

So this was Salamander's first day back in school after April break. And he continues to suffer from environmental allergies and gunked up meta/mito cycles...

His teacher sent an email home, explaining for the second time in maybe 2 months, that a class mate lost a parent (the kiddos lost their moms in both cases). Salamander is 10, his class mates are 10.. this is too young of an age to lose a parent, especially a mother..

And understandably, Salamander is very anxious....The full measure of the fears and anxieties triggered by these experiences will probably hit tonite at bed time...

Salamander is emotionally 'off kilter' and his cognitive functioning is affected today due to allergies + meta/mito issues. Despite what 'the books' may have to say about Aspies and their fabulous math skills, math is NOT one of Salamander's strongest skills. And they are working on converting fractions into percentages in school, and Salamander is just NOT getting the concept (despite multiple times explaining, visual examples and the likes).

We just spent almost an hour on figuring out that 12/40 = 30%. And I am exhausted trying to explain, trying to break through Salamander's resistance, trying to keep my cool, trying to keep Salamander calm and focused, trying to not let his palpable frustration overwhelm me and wear me down...

And pretty soon Potatey will come home from HIS school and will then want MY full attention too. And then there is dinner that needs to be prepared....

Here's what my horoscope had to say about today.

If only, if only....

"Trying to get too much work done in the course of one day might prove self-defeating today, dear Taurus. Your physical energy isn't what it usually is, and you are probably operating on nervous energy. Consider the situation carefully and list your tasks in order of urgency. If you don't get them all done by the end of the day, the world won't come to an end. In the evening: Rent a few movies, order a pizza and relax."

L.O.V.E Spells Love...

While my actual birthday left much to be desired from the traditional 'relax, get a few presents, party, cake, maybe a few drinks' perspective, THIS is what my two precious boys made for me pretty much immediately after they opened up their beautiful eyes...

They truly are two awesome young men.... and I love them so very, very much...

Forgive Me.. For I Have Sinned....

[got you thinking there for a moment, didn't I? HA!!]

I just spent an hour and forty five minutes doing absolutely nothing. Yes. One. Hour. And. Forty-Five. Minutes. Doing. NOTHING!!!

It's not that I don't have a million things to do. I do....I, however, consciously decided to blow off my to-do-list....

One hour catching up in reading my favorite blogs.
A 30 minute shower, as hot as I could possible stand it.
15 minutes playing a really silly (but funny) computer game my BIL send me.


And now I am going to utterly waste another 20 or so minutes to drive back and forth to my local Starbucks to get myself a Venti Caramel Macchiato and maybe, just maybe, a little something 'sweet' [HA!! I'll let you mull that one over too...]

After that I'll turn into a 'responsible and respectible adult' again [Bwahahahaha.. WHO am -I- kidding?]


Sunday, April 27, 2008

The 'What Women (w/ kids) Really Want' post has now been taken 'off line'. Let me know if you want a copy.

I have been teaching Salamander how to vacuum clean a room this morning. Is that something that needs to be taught, you ask?

Oh yes, it does.. While Salamander has seen me use the vacuum cleaner many times before, the 'see once, do it yourself next' principle does not apply here.

The idea of taking a very systemic approach, to work on one small area first while having the 'paths/laps' slightly overlap does not come naturally, it needs to be verbally explained and explicitly demonstrated in great detail. If I actually had carpet in this house, the tracks left by the vacuum cleaner would have been a great guide. But I don't have carpet (Potatey's allergies), so instead we used the seams in the wooden floor as our guide.

I have to say Salamander caught on very quickly (see, it's not that kids with Salamander's particular challenges can't learn.. they CAN.. as long as the right teaching modality is used). And he was motivated to complete the job - he wanted to have the house and general play areas look nice for when his friend comes over for a play date later today...

Saturday, April 26, 2008

THE Best Birthday Present...

My beautiful 10 year old (yes, that would be Salamander) just gave me the best birthday present ever.. I had the pleasure of listening to him being on the phone with a FRIEND having an entirely age appropriate reciprocal conversation. The friend's mom and I have arranged for a playdate for tomorrow, and the two boys absolutely INSISTED on talking on the phone to 'make plans for what we'll do tomorrow'. I even had to tell Salamander, after the conversation had been going on for quite a while. that it was time to 'get off the phone, you guys can talk all you want tomorrow!' Words that I had not EVER expected to roll out of my mouth....

The ability to converse on the phone, in true two-way style, is a new skill for Salamander. I have seen glimpses of it 'come on line' over the past several months.. on his birthday he had a great conversation with a set of grandparents. Today's conversation definitely FAR exceeded that one.

Congratulations, my precious boy.. you've come a long, long way and you'll continue to go far.

P.S. Boys HAVE been driving me crazy since they got up.. they are both a bit on the hyper side of things (which was why, in a way, Salamander talking with his friend for a while was a nice 'break'). The 10 minutes I am taking right now to post this is the first time I sat down since my last post.. they are running me raged!!! (but truth be told, I am loving every minute of it.).

One observation though.. why is it that when DADS celebrate their birthday, they get all the time they want away from their kids/family to do what THEY want to do, and why is that when MOMS have a birthday (notice that I am not writing 'celebrate'), they get to spend THE ENTIRE DAY (as in every single second) WITH their kids 'to celebrate'??? This may be a gross generalization, I don't know....

I love my kids, I do, I do, I do.. but man, a little break, maybe just to go shopping by/for MYSELF for an hour or so later today, would have been nice.... Nice try, no cigar though.... Their other parent truly felt that on 'your birthday you really should have the kids with YOU'...

Oh shoot, it's almost 11.30 am.. time to get organized for lunch as Potatey has soccer at 1 pm this afternoon.

Catch ya all later..

Happy Birthday to ME, Happy Birthday to ME..

Yup, today is the official start of the last year that I can still claim membership in the 'under 40' crowd... (figured it out yet? If not, click on my profile.. it'll spit my age right at ya).

I started my own little celebration by getting up at my usual insane time.. really nice actually as the house was dead quiet and I could hear MYSELF think for a change... Took a nice long shower while doing all those things that those glamour magazines (I haven't opened one in years.. but I remember from my pre kids days) tell you a girl should be doing while in the shower (no, I was NOT referring to THAT.. while THAT may be talked about in same glamour magazines and while THAT would have been icing on the proverbial GFCFSF egg free, nut free, yeast free etc birthday cake, THAT just ain't gonna happen...).

And after my shower I found a longish email from my mom (Hi mom!) and actually had time to write her a reply (until Potatey wandered in..)

Now it's time to get my butt off the computer and go make some coffee.. I'm sure the hordes will start running around making their usual racket soon.. I'll try to get an update up later today..

Friday, April 25, 2008

Holy Toledo!!!!

From David Kirby in Spectrum Magazine, I copied a few highlights, the whole article can be found here

"In February, I leaked news of the Federal government’s admission that vaccines had triggered autism in a little girl named Hannah Poling. The stunning revelation, though still reverberating around the world, was roundly downplayed by US officials, who insisted that Hannah had an extremely rare, genetic case of “aggravated” mitochondrial disorder, with zero bearing on other autism cases.

Dr. Julie Gerberding, Director of the US Centers for Disease Control and Prevention (CDC), rushed to the airwaves, exhorting parents to adhere to the nation’s intensive and virtually mandatory immunization schedule, and brushing off their legitimate anxieties by saying: “We've got to set aside this very isolated, unusual situation.”

Well, the days of setting aside are over: Hannah Poling is neither isolated nor unusual.

In fact, the boy who was selected to replace Hannah Poling as the first-ever thimerosal “test case” in so-called Vaccine Court, has just been found with many of the same unusual metabolic markers as . . you guessed it, Hannah Poling.

Hannah’s case was scheduled to be heard in Federal Claims Court on May 12 -- as one of three “test cases” of the theory that thimerosal (a mercury-based vaccine preservative) can cause autism. Test cases will help address general causation issues in all 4,900 autism claims now pending in Vaccine Court. But following the government concession, Hannah was withdrawn as the first test case of the thimerosal theory, and attorneys scrambled to find a replacement: a young boy from New York.

Last week, however, the court announced that the replacement thimerosal test case was also being withdrawn, in order to “proceed to an individual hearing on a different theory of causation.”

That theory, which applies to Hannah as well, maintains that children with dysfunctional mitochondria (the little batteries within each cell that convert food into energy) are susceptible to autistic regression, triggered by a vaccine-induced overtaxing of the immune system.

[snip, snip]

I personally thought that one Hannah Poling emerging out of Vaccine Court would be enough to change the way we vaccinate in this country. But now we have two. And there are many more Hannah’s out there, waiting to be counted. "

Hey David, and anybody else out there looking into the mitochondrial dysfunction-autism link.. I have a "Hannah" right here, waiting to be counted, and another "would-be Hannah" who, Thank God as mommy 'got smart', will NEVER have to be counted..

Thursday, April 24, 2008


captures quite well how I feel today....

I have this impeding feeling of doom, and this feeling has been with me since I got up bright and early (4.45 am) this morning.... I can't put my finger on the what, when, how or why.. but I know something is coming.... (and the feeling only got magnified when Salamander had a full fledged meltdown this morning.. having to do with the fact that we really haven't had any good, solid, one-on-one time this month as my work schedule has been so busy.. especially this week has been insane, and I've had to shuttle the poor guy to too many different places, it being vacation week and all that..).

The wave is bearing down on me and there is nothing I can do to get 'out of the way'. All I can do is take a really deep breath and brace for impact.. I'm a good swimmer, so I will have to put faith in the fact that, this time too, I'll claw my way back to the surface...(but if anybody wants to throw me a life jacket or a PFD, I won't say no.....).
Call the Coast Guard if I don't resurface in the next few days OK?

Wednesday, April 23, 2008

Doing Better...

For those of you that are wondering, Salamander is doing better.. and a little bit better every day (we indeed had ended up with a combo of a virus of some sort, seasonal allergies and a clearing of all kinds of nasties... ). Co-incidentally (or not), his slow but steady improvement started on the day I doubled his immune support supplements (containing arabinogalactan, beta glucans, OLE and colostrum)....

Don't have a whole heck of a lot time to post more right now... feeding time in the zoo.. and it's been another crazy work busy week so far (all paying work.. which is GOOD!!!).

Sunday, April 20, 2008

The Train Ride.....

[I very much needed this one today... ]

In Rough Waters..

Salamander has not been doing well, not at all. Poor kiddo in fact is quite ill. Not sure (yet) what is going on. Part of it may be the 'usual' mid April - mid May downturn (seasonal allergies?), part of it may 'just' a simple spring cold, part of it may be detox (as I posted a couple of days ago, Salamander showed elevated Bismuth in his most recent UTM.. yes, yes, another UTM will go in either tomorrow or Tuesday). 'It' is probably a combo of all of the above, and, are having their 'usual' effects on his metabolism (aka everything comes to a grinding HALT).

I have to say though, as testimony to how far he's come, that any 'autistic behavior' effects have been quite minimal and, overall, quite manageable. He is actually quite 'good' about explaining to those around him that are getting in his face a bit too much (read: younger brother) that he's 'not feeling good', that his 'brain feels like it's doing a jungle dance in my head', that 'all my muscles and bones hurt', and that he 'just wants to be alone'. And I am very, very PROUD of Salamander to be able to say all of this, while staying reasonably calm. Previously, he would just have screamed, thrown things, pinched, scratched, bit, spit, etc... (and truth be told, we did have a little of that late yesterday afternoon.. but it was of short duration and intensity.. ).

Right now, he's taking a nice long soak in a hot bath... It's amazing the effect water has on this child (and I've heard many a parent of a child with 'autism' comment on this). And I'm just keepihg him company... just to let him know that he's not alone in all this (he's not in a very talkative mood, and that's just fine)...

[Potatey is off doing stuff with his dad.. so at least I don't have to worry for a bit about him feeling ignored and left out.. Potatey got upset earlier this morning when it become clear that Salamander was not able to be in the same room, let alone play, with him.... it's been a while since we've seen Salamander like this, and all though as I said, Salamander is going a stellar job communicating his needs, Potatey's feelings got hurt ...]

Oh, two recent Age of Autism posts that I think will be worthwhile the read...
Polio Survivor on Immunizations,


Childhood Pneumonia Rises in Scotland

Salamander wants to come out of the tub.. Catch ya all later...

Friday, April 18, 2008

I do not like Friday mornings, I do not, I do not, I do not ....

It's when a major 'transition' occurs in this house, and inevitably I have to work 4 times as hard to keep the boyos focused on following the usual routine involved in getting ready for school, and inevitably, Salamander barely get ready on time, and inevitably, Salamander leaves the house disorganized and not as calm and collected as he needs to be for the school day ahead (Potatey is more flexible and more able to self regulate, so deviations from the usual affect him a whole lot less)

I can't fault the boyos, they do get terribly excited, and I want them to be excited about spending time with 'the other party involved'... it would be nice though if the other party showed a little more understanding for the need to stick to 'the usual school morning routine' instead of turning Friday mornings into one big, free-for-all party (uhm, how about doing that AFTER school on Fridays?). And then of course I'm the evil witch for shooting my little space rangers down from the stratosphere and bringing them back to Planet Earth....(don't think I haven't tried moving the 'transition' to AFTER school on Fridays...).

Off to get my work day started.. yesterday was not a good one for me.. I just couldn't get back on the crazy roller coaster, no matter how hard I tried. But today I'm climbing back on the crazy horse.. with spurrs on..

Oh, one more thing. WHAT is with all the articles and other 'publications' floating around all of the sudden linking autism and meta/mito dysfunction? I understand the trigger (the Polling case), but really folks, this is NOT new information. Maybe because I've lived the meta/mito stuff for a long time already and can tie the ebb and flow of 'autistic symptoms' to when, especially Salamander's, metabolic/mitochondrial cycles go to pot?

I just hope that the, almost manic, focus on meta/mito dysfunction is not turning into the next 'mercury'. What I am trying to say is that, for most kids with ASD, there is not ONE trigger that makes the autistic disorder manifest. It's many cascading triggers. Is an underlying susceptibilty to meta/mito dysfunction a huge piece of the puzzle? Absolutely. And it's probaby this suspeptibilty to meta/mito dysfunction that makes the kids so sensitive to environmental toxins, to viral overload, to bacterial overload. It is however ALL those pieces that need to be addressed in treating what is referred to as 'autism'. I just hope that parents, who so far have not been able to achieve the improvements they are looking for in their kids, don't en-masse jump on the 'we need to treat the kids as if they have a mito/meta disorder' bandwagon....

Please don't abandon what you already may have in place (diet, gut treatments, anti virals, detoxification protocols, etc); ADD the meta/mito piece to what you may already be doing. But trust me, the typical 'recommendations' for meta/mito which involve HIGH doses of B complex, high doses of CoQ10 and high doses of L-carnitine are not going to get you the results you want (been there, done that)...

For my two, I am getting much better results with small doses of a lot of different supplements targeted toward addressing all of the blocks they have in all the various metabolic pathways. Of course this approach requires knowing what those blocks are and how to work around them. And for my two, I found those answers in Dr. Amy Yasko's research..

Thursday, April 17, 2008

Having a Totally Icky Day....

Got sick last nite at around dinner time (not a good time in this house for the Head Zoo Keeper to 'go down'). Barely made it through dinner; dragged myself through the post dinner routine, bed time supplements, etc; got the boys off to bed (can't remember WHAT books I read to them. LOL); dragged my sorry butt back downstairs; made a feeble attempt at cleaning up my disaster kitchen; sat down at around 9.45 pm and utterly passed out.

Until about 2.30 am, that is.. Potatey was up pretty much every 20 minutes from there on out until about 4.30 am. Night terrors, bad dreams, the works.. Oy...

5 am my alarm goes off, but of course I overslept - another thing that the Head Zoo Keeper can not afford to do....

Got everybody through breakfast, and Salamander on the bus to school... Salamander continues to not look so good, at least his congestion is slowly breaking up, but his metabolism is definitely 'off' (confirmed by a test report I got yesterday.. he's clearing a lot of Bismuth; no where in the blazes is all that Bismuth coming from?)

Got Potatey off to daycare. Thank goodness his little friends were romping around outside so he ran off to join them without so much as backward glance.

Drove back home (can't remember how I got back) and spent a good hour and way too much money on restocking the boyos' supplement cabinet.

Missed an important conference call for a work project because I had forgotten to turn the phone ringer back on (I turn my office phone off after 7 pm.. my office is very close to the boyos bedrooms and the @$#!#$ phone tends to ring at all odd hours of the nite).

Have a ton of work to get done, but just absolutely no energy, no brain zip, no 'umph' (as is probably evident from the rambling nonsense I am posting right now).


I hate it when I get like this..

I think I'll go find something to eat (please, please, please stomach.. don't do to me what you did to me last nite) and then a long hot shower. Hopefully that'll get the synapses firing...

Tuesday, April 15, 2008

Do Not, I Repeat, Do Not..

attempt to 'quickly' mail a few letters from a small town post office on TAX DAY!!!!

OMG, trying to find parking was worse than trying to find a parking spot on Newbury Street in Boston. And the line of (im)patiently waiting people snaked all the way down the front stairs and spilled onto the side walk. Granted, I live in a relatively small town and our post office is tiny.

What never fails to crack me up though (I have a well developed sense for the absurd) is that, inevitably, as the place got more and more crowded, less 'windows' became available to help customers!!! 'Got to go take my lunch break now', said one postal (!?) worker as an older lady with an enormous box shuffled to the counter. Another one needed a long overdue potty break.

'Any people here for passports?' yelled a third worker into the crowd. When she got no response, she yelled the same sentence again, louder this time. And louder, and louder. When she still got no takers, she just didn't know what to do with herself. She kept watching the crowd yelling her passport line every 5 minutes. Finally I couldn't help myself and yelled back 'Nope, no takers for passports, but plenty of folks wanting to mail their taxes, so how about using the passport window for stamps today?' I got a few laughs from the waiting crowd, passport lady didn't think I was that funny...

Ah well, it was a nice sunny day, and I will never pass on an opportunity to get a good laugh out of an utterly absurd situation... Like, whenever I drive by the Massachussetss Hospital School and see the jam packed cemetary right across the road, or when I drive by a High School in a neighboring town and I see that the Senior Center is flanked by the school's sporting fields with lots of sweaty young bucks strutting their stuff (just wondering if there is an increase in 911 calls from the Senior Center this time of year, as I am sure the sight of all that young firm flesh may be the 'death' of grandma.. what a way to go.. LOL)

We're Pretty Good At Cleaning Up Poop...

It's the crap we can't handle..

So starts an alert from NAA that hit my mailbox this morning. Trying to get a linkie thingie, so you can read the alert in its entirety...

Here's two paragraphs that I want you all to read, read, read and read again...(emphasis added by moi)

"More crap: overly aggressive combination vaccination schedules that haven't been properly tested; American Academy of Pediatrics' sluggish response to biomedical treatments that are helping thousands of children on the spectrum; thousands of families unable to afford therapy and medical treatments; millions of dollars going to the wrong research. And on top of that, continually being told that autism is a gift.

Autism is not a gift. Our children are the gift. Autism is the inability to communicate, the inability to be comfortable, the inability to stay safe. Autism is stomach ache and insomnia and seizures and headbanging and dozens of other symptoms unworthy of a bow. But our children are human beings worthy of prevention, treatment, and hope for recovery."

Amen, Amen, AMEN!!!!!

Complaint Logged..

with the lawn company..

They feel terrible about the whole situation, as they SHOULD!!! I will get a formal apology by mail and any and all outstanding bills will be voided.

I hope they will have learned from this whole mess....Allergies are serious business!!! TG, Potatey is bouncing back and pretty much back to his usual impish self (but I am not going to tell 'em that.. let 'em sweat this for a bit).

(and they are damn lucky that Potatey's response to corn is 'limited' to GI and tummy troubles)

Monday, April 14, 2008

A Pretty Good Day...

So today was one of those days that things actually quite neatly happened the way I wanted them to happen (so yes, if past experience is any prediction for the future, that means the rest of the week is going to be awful.. LOL).

So today was a good day and that is all that matters right now.

Sunday, April 13, 2008

Just in a pisser of a mood right now. Let's just say that some people's seemingly limitless capacity for selfishness, callousness and cruelty, all under the guise of 'making a man out of the child', absolutely blows me away (and not in an admiring sense...)

So on to happier images, and off to put that seething anger energy to some good use in getting paying work done...

Reality Check..

So today I got a glimpse of what it is like to (attempt to) take care of and keep safe a severely affected non-verbal child with autism.
This child is a beautiful young man of about Salamander's age. And when I looked into his eyes today, there was so much going on inside that head that just can't come out. And to see the deep sadness in his eyes and to watch the agony in his behaviors when he just could not communicate his needs, it broke my heart in a million pieces...

While things do get rough here, my daily zoo is a walk in the park compared to that...I am counting my lucky stars that Salamander by now is only 'mildly affected', I really do....

Saturday, April 12, 2008

And then

the fooking lawn company has the fooking nerve to send me a bill....

(in all fairness, I haven't logged a complaint yet.. but really, it's pretty damn clear from the notes I made on the contract that I did NOT want to corn gluten applied because of corn allergy of the kids)

They are damn lucky that Potatey's corn allergy, while ingestion based (and yes, that DOES include breathing the stuff in and exposure through skin), is 'limited' to belly and GI problems, and does not trigger any anaphylaxis.

Needless to say, a complaint WILL be logged. Only reason I haven't done it yet is because I am so pissed off that I find it impossible to write a cool, calm, collected and polite letter..

Billing me? The fooking nerve.. I should be billing them for emotional suffering.. (it really does a number on a mom to see her little sprout bend over in agony crying 'my belly hurts, my belly hurts', while hunched over the toilet because he has to throw up..)

So this past week...

SUCKED!!! Like a big one. Plain and simple.
Last weekend was rough, so we were all exhausted to begin with. And it was mostly downhill from there.
My week revolved around:
  • bodily excretions in all their nasty permutations (especially Salamander hasn't been doing too good) - the labs I typically use for the boyos' tests are not going to love me this week,
  • challenging work projects that needed a lot of attention and energy (and as my batteries were running quite low, keeping things moving along was a challenge),
  • a stupid lawn company who, despite my explicit orders, sprayed my yard with corn gluten (Potatey is very, very sensitive to corn.... and as you would have guessed, we are dealing with belly issues right now..),
  • issues at Salamander's school that definitely could be interpreted as bullying (still need to get to a resolution with school on those), and
  • worrying about a friend who's struggling with awfully familiar crap revolving the impact a child with challenges can have on family dynamics (and I am specifically referring to how the 'adult' male in the family is handling the impact of the challenges).
    I have so much that I would like to say on this particular subject, but I'll hold my tongue. Let's just end this with saying that the selfishness and utter disregard for another person's feelings that some 'men' display toward their offspring (and then to watch them come up with a lengthy list of 'justifications' why what they're doing is OK..) makes me so mad that I could literally vomit up anger...

However, every cloud HAS a silver lining. The weather predictions for today were awful, but surprise, surprise, it's actually beautiful outside!!!

The boyos allowed me to take some pictures. Here goes:

Sunday, April 06, 2008

Another Adjustment

So H. is primary parent this weekend.. I am over my eyeballs in taxes (both last year's and determining my estimated taxes for this year), I have three work deadlines by Monday morning (as in tomorrow!!) 9 am., and there are simply NOT enough hours in the day to get it all done while at the same time being Head Zoo Keeper.

Let's just say that another 'pink cloud perspective' went through a harsh adjustment. You see, the prevailing thought has been for many, many years that it really can't be that hard to keep things running smoothly in this Funny Farm. If only -I- (as in me) wasn't so neurotic, so paranoid about everything, and if only -I wasn't such a control freak, than this place would pretty much run itself and the boys would be just fine.

Oh well.. not quite... Guess my shoes are a bit harder to fill than always thought, and that actually there ARE very good reasons for everything that I do and how I do things...


(and now back to taxes, taxes and more taxes.. and then get a few more hours of work in)

Saturday, April 05, 2008

So This Is

What Pediatrics (the Official Journal of the American Academy of Pediatrics, that is) WILL publish....Pardonez-moi as I go puke in my waste basket, but what a waste of money and resources.

So really, taking care of a child with an Autism Spectrum Disorder puts a dent in the family income? I never would have guessed. Forgive my sarcasm here, but DUH!!!

Quick rundown of reasons, and I don't have to look any further than my own house. One parent typically has to give up her (yes, I purposely write 'her') job or significantly downscale her career (with DOES tend to have an effect on your paycheck), now add to that all the out-of-pocket costs of getting your child well (as after all autism IS genetic, so any and all symptoms the child may be suffering from are due to 'the autism', so you can forget about getting anything covered through your insurance). Then factor in that 85% of marriages go bust after an autism diagnosis, and well, well, well.. big surprise.. your financial resources evaporate faster than icecream in the Sahara desert...

And "The average loss of annual income associated with having a child with autism spectrum disorder was $6200 or 14% of their reported income. " is a GROSS underestimation. Try, "was the equivalent of a year's worth of tuition at a really good college" instead.

Bah, humbug...

Friday, April 04, 2008


In line with bringing my focus back to where it needs to be, which is with my boys (and not waste my precious energy on attitudes and behaviors I cannot change.. not that I haven't tried over the years.. LOL), I am posting some amazing art/stuff that my boys produced this week.

First up is Potatey.. no further introduction required..

Second is Salamander. In OT, he has been working on visual-spatial skills, visual motor planning, eye tracking and pattern recognition skills. An example of an exercise is displayed below.
Man, -I- had a hard time with this one, and my eye tracking and pattern recognition skills are pretty darn good. I am so impressed that Salamander was able to complete this exercise!!!!

To Provide Some Counterweight..

to my previous post...

I am going to order a couple of copies of this film, and I will share my copies far and wide...

I've Been a Bad, Bad Girl....

Can't get into the details in this public forum, but I'll admit I am getting entirely too much pleasure out of 'educating a certain person' about the not-so-nice aspects of autism, and the associated illnesses that our kids are suffering from.

Let's just end my little confession with the statement that this person has been 'avoiding' the subject for far too long but, now that things are going better (and sometimes easier) with Salamander, wants to share his rather 'pink cloud' perspective with the world on what it is like to love, take care of and parent a child like Salamander.

And it is high time that that perspective gets a reality check... (oh yes, I can be a real BITCH when I'm pissed off.. )

Tuesday, April 01, 2008

Salamander The Beautiful


(Oh, and please, people outside of 'the community', do NOT wish me a 'happy world autism awareness day'.. While we certainly have many happy moments here in this house despite all of our challenges, the particular combination of words makes me want to throw up..)

Warning: The tune of this post is going to be radically different from what I wrote yesterday. Regardless, yes, I am still feeling that, considering where Salamander is now and where we were 4 years ago, I AM truly blessed...

[I do apologize for the crappy formatting.. I'll try to fix that later]

Here is my beautiful young man in Spring 2008 (after working our butts off for 4 long years towards getting him healthier, and living through many HARD times getting him there )

And here is that same child in the Spring of 2004, deadly ill and nobody, nobody was interested in listening to my worries or interested in helping me figure out what was so wrong. I'm sorry, but being 35 lbs soaking wet at almost 6 years of age, projectile vomitting 3 to 4 times a day while absolutely refusing to eat, catching every viral and bacterial infection 'in the book' (and then some) from his environment, etc. has NOTHING to do with having been diagnosed with an autism spectrum disorder..

But truth be told, the picture that really gets me going is Salamander at the age of 2 - with bright shiny eyes, big grin, happiness oozing out of every pore of his little body and looking STRAIGHT into the camera.

Was he already ill at that time? Frequently yes.. mystery infections were a permanent fixture in our house. Did he have sensory regulation issues at that age? Yes. Was he hyperactive at that age? Yes, but no more than any rambunctious, inquisitive boy of that age. Did he show the symptoms of autism at that age? NOPE, NOPE, NOPE, NOPE, NOPE.

And dammit, looking at the picture of 2 year old Salamander, I want BACK where Salamander was at at that age (so shoot me for feeling that all that has happened to him, most of which could have been caught much earlier in his young life, has robbed me of something, has robbed HIM of something)

I know that eventually, ever so slowly, Salamander will get back to that 'enjoyment of life that oozed out of every pore of his body'. I will fight till my dying day to MAKE SURE that he gets a chance to get back to that point. And I will also continue to be a loud mouthed, obnoxious, in your face BITCH about telling you that what is called 'autism' is in most cases a completely fucked up (oops, did I actually write that?) metabolism.. something that is TREATABLE!!!!!!

(Let's just say that today the blissfull ignorance of the world at large when it comes to the suffering of our children really PISSED me off)

In Honor of Autism Awareness Month..

This just showed up on my mailbox.. I have NOT had a chance to see this documentary myself, so I will reserve judgement either way...
To those of you that DID see it, feel free to post a 'review'.. I'll do same once I have a free (HA!!) moment..

HBO is showing Autism: The Musical online for free this week:
not sure how long this will last.

AUTISM: THE MUSICAL follows the extraordinary acting coach Elaine Hall, five children with autism, and their parents as they heroically mount a full-length original stage production.

Through trial and error, tears and laughter, these incredible families learn to communicate their feelings in song and performance, finding solace and joy in the act of creating. A veritable feast of astounding breakthroughs, this spellbinding film offers a full-throated celebration of kids living with an increasingly prevalent disorder.

Director Tricia Regan vividly captures the individual personalities and problems of each child, from precocious Henry who talks a mile-a-minute about dinosaurs, to Neal, a sensitive and articulate boy who nonetheless struggles to speak at all.
The parents, too, are fascinating studies in unconditional love, especially Elaine, the mastermind behind the musical and mother of Neal.

A consciousness-raising and empathetic portrait of children and their families living with autism, AUTISM: THE MUSICAL celebrates the spark of humanity in each of us. "Moving, dramatic, therapeutic and unburdened by reliance on talking heads" (Variety), this film will change the way you look at autism.