Thursday, November 30, 2006

Doing a little better....

Not that I have any more clarity in where this relationship I eluded to yesterday is heading.. but I am doing a little better with the whole situation today. I am confused, I have some big questions to explore and answer, but I decided that I do not need to do the exploring and answering right now. It's OK for once to not act (as I'm prone to do), but to actually wait things out...What ever will happen, will happen and it will happen for a reason...

One part of the issues in this particular relationship is that it was started under such different circumstances as where we find ourselves now. A lot has happened to us over the past 10+ years, and unfortunately more bad than good. And I think we both have very different coping mechanisms and very different ways of getting 'over' the bad stuff. I tend to try to learn as much as possible from the 'what happened' while at the same time not letting that same 'what happened' paralyze me; the other party dwells, almost wallows, in the 'what happened'. I can handle that for about 48 to 72 hours, but then I have to MOVE. I can't stand circling around a particular situation for months and months on end; my thing is 'accept it, deal with it, and move on'....

I was listening to a Billy Joel song in the car today, "A Matter of Trust", and a few lines really stood out ...

"Some love is just a lie of the heart
The cold remains of what began with a passionate start
And they may not want it to end
But it will, it's just a question of when.."


"I can't offer you proof
But you're gonna face a moment of truth
It's hard when you're always afraid
You just recover when another belief is betrayed"

and then also

"Some love is just a lie of the mind
It's make believe until it's only a matter of time
And some might have learned to adjust
But then it never was a matter of trust"

Hmmm. I am certainly recognizing a few things here....

Wednesday, November 29, 2006

Tough times..

I am going through some tough times in a personal relationship. I thought I had shielded myself from the hurt and disappointment in that relationship by now, but I was proven wrong. This weekend I got a glimmer of what that relationship could have been, and then... BAM.. reality came crashing in again on Tuesday morning....And I am amazed that after all this time, after having gone through this so many times before, I can still hurt this much....

Driving home, I happened upon the following song by The Boss (yes, I am a Bruce nut). It really struck a nerve, and I had to pull over on the highway as I was crying so hard......

Hearts of Stone
You stare in the mirror at the lines in your face
And you try to see, girl
The way things went when we were at your place
In the days it was just you and me, girl
And you cry because things ain't like before
Well don't you know they can't be that way
But don't worry baby
I can't talk now. I'm not alone
So put your ear close to the phone
'Cause this is the last dance
This is the last chance for hearts of stone
If there was something, baby, that I could do
Something that would last, honey, I would
But we all know, girl, especially you do
How you can't return to your past, no
So girl close your eyes and I'll be there
Hold me once more and we can go anywhere
Ah, we could.....
I can't talk now. I'm not alone
So put your ear close to the phone
'Cause this is the last dance
This is the last chance for heart of stone
And you cry because things ain't like before
Well don't you know they can't be like that
Well I know it, baby
I can't talk now. I'm not alone
So put your ear close to the phone
'Cause this is the last dance
This is the last change for hearts of stone

Tuesday, November 28, 2006

Forgot one thing...

THIS is why I do what I do....Look at this picture! This is what Salamander looks like when his body works the way it is supposed to.

And now take a look at what he looks like when his body does NOT work the way it's supposed to....

Need I say more??

Sorry..have to go MIA again for a bit...

TG was rough, very rough. Salamander is detoxing nickel, mercury, lead, cadmium, virus, bacteria, you name it. He was one sick little boy on Turkey Day. He is doing much better again as of yesterday morning, but I had to go back into crisis management mode. So of course other stuff (including work and a draft IEP) has been piling up and I need to take the rest of the week to catch up.

The next episodes of The Soap will go up at some point..


Wednesday, November 22, 2006

Wishing you all a very happy Thanksgiving..

I know, I know... Episode Two of 'The Soap" needs to go up. I'll get to it, I promise...

But not today :)

I decided to attempt to turn this Thanksgiving into a family gathering (yes, I have completely lost my marbles), for the boys' sake more than anything. My in-laws have been trying to get out to the States for a visit since August of this year, but all of our schedules have been soooo crazy, that we were never able to make things fit. So I suggested they come over for Thanksgiving - the boys will be out of school, I am shutting down my business for a couple of days, so things should work out perfectly, right???

WRRRROOONNNGGGG - what the HELL was I thinking?

Both boys have been not exactly in the best space this past week - as they have both been feeling lousy. Now combine that with getting super revved up because of grandparents coming to visit, and you can imagine how much I've gotten done in terms of holiday prep these past couple of days. Nothing, nada, zippo.

I just shipped them off to their respective schools, and as soon as I finish this post, I am going to do my 'bat out of hell' drill..

All stress and craziness aside (and I am sure that many of you are just as harried and stressed out as I am right now), I do want to encourage all of you to take a little time tomorrow and just be thankful for what you have (yes, I'll practice what I preach..). I know that for most of us on the Spectrum rollercoaster, holidays can add an extra 'layer' (of stress, sadness, loneliness), but do try to let go of that for just a while. Try to just enjoy your kiddos and not worry too much about what the future will bring (you can all start doing THAT again on Friday).

And now I have to get my butt off this blog and get shit done!!

Blessings to all of you

Oh, and to my friend K S.. .. yes, Rutger Hauer is Dutch..

Monday, November 20, 2006

Sleep... Oh Sweet Sleep

Had about 4.5 hours of uninterrupted sleep last night. Oh Joy!!!

Am feeling a ton better, so am climbing back in the saddle and am ready to rumble.

Sunday, November 19, 2006


I was going to write Episode Two of "The Soap Opera", but for whatever reason I kept getting back to this feeling of being utterly alone, without bearing, a rudderless ship about to get shipwrecked on the coast of whatever... So I temporarily have given up on Episode Two, and decided to go with my current thoughts. I have no idea where I am going to end up (kinda tends to happen when you get shipwrecked), but I do know that this is not going to be one of my "upbeat, I can handle anything and spit in the eye of fate" kinda posts. Au contraire. So if the more soul searching and baring, "I don't know which end is up" posts are not your thing, this is your cue to exit.....

Shipwrecked... that is how I've been feeling this past week. Here I was, happily sailing along and .. BAM... out of nowhere a wicked Nor'Easter hits, and now I'm here, shipwrecked once again.....

The first sign of the stormier weather ahead I got this past Monday. I had gotten up at 1 am to have a block of quiet and alone time to make some decent progress on a work project. At around 5 am, I started feeling really lousy; stomach ache, bone and muscle aches, chills. I first blamed it on having gotten up so early and having worked quite hard without taking the time to get something to eat or drink, then I blamed it on the fact that the house was so damn cold, and finally settled on it all being a combination of the stress and emotion of the prior day (Salamander's soccer team had made it to the town championships and almost won - a story for another day) and my nervousness and anxiety around having to take Salamander in later that morning for his 3 year neuropsychology re-assessment..
By Monday afternoon however I was running a 102.7 F fever and was hacking my lungs out - a combo of my annual bronchitis attack from hell and having pushed myself into a massive detox by implementing MY genomics based treatment protocol a bit too aggressively (I transitioned Salamander from the DAN protocol to Dr. Yasko's genomics based protocol in August of this year, and started Potatey on a similar program at around the same time - that too is a story for another day; actually this would probably be the latter part of Episode 2 and the beginning part of Episode 3 of The Soap). Yes, stuuupeeed. Amazing how I can be so smart with my kids and such a numbskull when it comes to my own health.

So... BAM... blown off course by the winds of shear stupidity by pushing myself way too hard. And as a result I have had maybe 4 or 5 hours of sleep since that Monday (as it's kinda hard to sleep when your lungs keep vacating your body at the most inopportune times). I can function on very little sleep, but I too have my limits (yes, reeaaalllyyy).

Taking Salamander back to Dr. M for his 3-year re-assessment was harder than I thought it would be. It's been 3 years now since we cajooled the public school system in having Salamander assessed for learning disabilities and other stuff. And in February of next year, it'll be exactly 3 years since Salamander's formal diagnosis (through a full neuropsychology assessment by Dr. M). Though the diagnosis did not come as a surprise at that time, I still keep myself from revisiting that particular time of our lives as much as possible. Salamander was in such a bad place, both physically and emotionally (an ATEC score of 101 will give you a clue..).
But by being back in that exact same office, I was thrown back basically by default. We had gotten there a little early and Salamander was anxious. We had talked about what would happen, and he did vaguely recall Dr. M as being the 'talking doctor', but that was pretty much the extent of his recollection. Salamander continues to have a hard time with situations of which he does not have any prior active memories. He really has made enormous progress, especially over the past 2 months, but it was a little disheartening to see behaviors resurfacing that I hadn't seen for a while. He ran back and forth through the waiting area, and when Dr. M came to get us, Salamander refused to make eye contact and did not attend when Dr. M spoke with him. My heart skipped a few beats right there....
Dr. M walked us to his office, Salamander immediately dove into Dr. M's toy car collection. Dr. M and I talked for a bit, I gave him a brief update on how things had gone with school during the 3-year re-eval IEP meeting of the prior week, and then Dr. M tried to engage Salamander. Salamander perseverated (another behavior I hadn't seen for a while) on Dr. M's toy cars and then discovered Dr. M's miniature basketball hoop. Dr. M immediately cued in and told Salamander that he could throw hoops "three times" and that it would then be time to "say goodbye to mom and get to work". Salamander replied, in true form, that he only needed two throws to hit a basket, which he then promptly did. Mom was sent back to the waiting area, and about 15 minutes later Dr. M poked his head in to let me know that Salamander had settled down beautifully and was hard at work. Phew...

I was then left with a huge stack of questionnaires to complete. Some the same as I had completed almost 3 years prior, some different. While I could clearly see the progress made over these past 3 years in questionnaires related to behavior and anger management, and while it is clear that Salamander has acquired the skills required for functional communication, it also became crystal clear that actual consistent use of these skills, especially in emotional and ambiguous situations, still is an area of great difficulty for him. It is going to take a lot of hard work, not in the least from Salamander himself, to get those functional communication skills firmly established. The will and motivation is certainly there, these new found skills however are very fragile and will need lots of nourishment and encouragement to come to full fruition. And the effects of potentially not solidly acquiring these functional communication skills are just so pervasive and will affect him in so many aspects of life... I remember the very angry and so very sad little boy he was at the age of almost 6, I cannot bear to think of that same amount of anger, frustration and despair balled up inside a teenager, which, unless we can help him become more secure in his ability to communicate his thoughts, wishes and desires under a variety of circumstances, is really not that far out of the realm of possibilities.

So.. BAM... lost my rudder on the Trip Down Memory Lane, and you all know how good I am at repairs in choppy waters... NOT....

We kinda limped through the rest of the week (Salamander is holding his own in the neuropsych evaluation - he is working hard and steadily through the battery of tests Dr. M has planned for him), and then crashed and burned this weekend. I had run out a couple of weeks ago of a particular supplement that I had been using with the boys, and realized earlier this week that both boys really needed this supplement to keep the bloated bellies in check, so I reordered and restarted just before the weekend. Which resulted in another round of die-off of bad gut bugs for Potatey and another layer of detox for Salamander.
So of course Potatey was edgy and cranky this weekend, and Salamander's overall mood, and ability to regulate his responses to what he perceives as purposeful attempts by his family members to annoy and frustrate him, took a sharp nose dive. A lot of behaviors I haven't seen in at least 2 months resurfaced... Intellectually I know that this is all part of detox. And if the trend set over the past 2 months is any predictor, I know he'll get out of this particular bout much better than he went into it. I still absolutely hate for Salamander to have to go through this - having triggered a big bout of detox in myself I now know first hand that detox SUCKS... BIG TIME. I supported both boys as much as I possibly could, nutritionally and emotionally, but unfortunately we'll have to just ride it out.
What makes detox extra hard is that I cannot seem to get through DH's skull that the boys are not acting out because they want to, but because they feel absolutely crappy (it's not that DH is that pleasant to be around when he's not feeling well..). DH seems to expect, especially for Salamander, that because Salamander is able to regulate himself so much better now when he is feeling really, really good, he should then therefore be able to regulate himself too when he's feeling crappy. So of course every time Salamander acts out, DH gets even more curt and snippy with him. Which then of course triggers an emotional meltdown... ..
What Salamander needs when he's going through detox is lots of emotional support and lots of encouragement, not stern lectures.... DH just doesn't get that detox is really, really hard - trying to talk to DH about it and finding a sounding board in trying to decide whether to stick out the current bout of detox or to pull back a little is an effort in futility...

Which leaves me shipwrecked... once again.. on the jagged coast lines of the Island of Hope.

And the only thing that is pushing me tonight to crawl up those shores once again, finding what scrap wood I can to build a raft and to set sail again heading for the Land of Recovery, is that Salamander needs for me to never, ever give up in my quest to heal him.

I also know that I am not the only traveler that gets beached frequently. There are many with me on this journey, and more join us every day. To those fellow travelers that I have come to call my friends, I really need you tonight.....

Saturday, November 18, 2006

Thank you!!!

Oh, and I totally forgot to thank my friend C.. G.. who gave me a BIG kick in the ass last Sunday to get going on my blog again.

So you have her to thank for me spouting my stuff again. HA

I'm Ba ack

I think. I hope.....

Boy. life just has been so absolutely insane. Combine the tripple roller coaster of raising a spectrum kiddo with a dollop of discovering significant medical issues in one of the parents, add a twist of finding out that kiddo no 2, while most definitely NOT on the spectrum, has the same immune system, digestive, metabolic, and what not, shitta going on as his hig brother, and.. for the Grand Finale.. top it off with the devastating news that one of the kiddos grandparents is terminally ill with cancer, and what do you get??? ...... [drum roll in the background]....

You guess it - you get my soap opera in the extreme, absolute trainwreck of a life.

Oh... you want details? All the gory details?

Well, sit back and enjoy the ride (the girl has gotta keep her sense of humor - twisted though it may be).

OK, where to start...At the beginning I guess....

Last time I updated this, the boys' dad, H., was going through a diagnostic process for his ever increasing migraines. He went to several different neuros, was poked, prodded, gave buckets full of blood, and was about to be sent home with the diagnosis "It's all in your head" (well, no shit Sherlock, migraines typically ARE in the head), when he had an "episode" right smack in front of his chiropractor. God Bless that chiropractor who had dealt with these kinds of episodes before, recognized it for what it was and was able to provide a very detailed account of what happened to the various neuros that were at that time dealing with H.'s issues.... and BAM... we had some serious action on the part of the medical professionals (finally).

What a difference having a detailed observation from another medical professional made in having further investigations set up. Never mind that I had dropped the '"S" (no, not THAT S word, you dumbass, I meant SEIZURE) word more than once, but hell, I'm not an MD (although I can talk circles around many of them) and must therefore be a nutcase.

Moving on... H. was admitted to the hospital for a 4 day epilepsy study. Lots of little 'spike' activity was found, nothing really too concerning until....BAM once again... he had the "BIG ONE" about 30 minutes before he was supposedly getting discharged. Needless to say, discharge got delayed while the experts scratched their heads and consulted their books and finally came to the conclusion that... surprise, surprise... H. has a partial complex seizure disorder originating from a focal point in the left frontal lobe.


That diagnosis certainly started to fit a whole bunch of puzzle pieces together, the absence spells, the migraines, the loss of speech and motor control episodes, the on again, off again clumsiness, even the mood swings...

H. has been on seizure meds since that epilepsy study, and anybody who has or knows another person with a seizure disorder knows that it's not a matter of popping a few pills and voila your seizure issues are gone. This is a very tedious process of slowly building up the meds (as most of these meds are cytotoxic as hell, so you don't want to blow the patient's kidneys and liver to Kingdom Come by immediately going to full dose), trying a few different med combos, lots of blood work to monitor med build-up and how your vital organs are handling the meds... and all the while, as you don't have full protection of the meds yet... the seizures do go on. And several of these meds have an impressive array of side effects.. especially mood wise....

So we have had and still are having lots of fun with the whole med build up process. Finally, these past 2 weeks have been halfway decent in terms of seizure activity and the ability to control or stop them in their tracks. H. is by no means seizure free as of yet, and meds wise there is not much more left to be done. He now hasto start taking a closer look at what trigger factors are (physical stress?, mental stress?, diet?) and find better ways to mitigate those trigger factors.

Needless to say this whole seizure circus on top of Salamander's challenges has placed quite a burden on what little was left of my sanity to begin with. We are truly trying to get through life one day at a time, frequently one hour or even a minute at a time. The boys have learned to handle their dad's seizures in a stride, they both know that daddy has a seizure disorder, we don't dance around issues in this house.

That is, they know the word, I'm not sure they completely understand what it all means, we've tried to keep the explanations simple... when dad has one of his episodes, we tell the boys that daddy's brain had the hick-ups and that daddy's brain needs to go reboot itself. My boys may not know that before CDs existed you actually played something called an LP on a record player, but boy, they do know what a computer reboot means...

And this then concludes the first installment in the trainwreck saga. Time to get dinner ready for the Hungry Horde.

Later, alligator (I hope, unless the train rolls of the damn tracks again.. so if I don't resurface in the next few days, you KNOW I have had to add another installment to the trainwreck saga)