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Archive for the ‘Autism’ Category

A remarkably unusual emotional landscape

09 Sep

To pretty much anyone I know, if you were to make the above statement to them in relation to me, the automatic answer would be, “Well, DUH!”  Of course I have a remarkably unusual emotional landscape, but every now and again, I’m reminded in a quantifiable way of just how.

See, that’s the odd thing about it: we all know I’m weird, but could you tell me how I’m weird?  And is my weird unacceptable?  (A lot of people seem to think that it is.)  Why is it unacceptable?  If you try to tell that it’s not unacceptable, aren’t you really just trying to avoid hurting my feelings or starting a fight?  (These are the things that I cannot perceive and do not immediately understand.)

It’s a bit strange for me to think about these things right now because I know that my diet has been fabulous and that my supplements have been spot-on, and yet I’m feeling very much in touch with my Asperger’s.

Maybe I should give a little background story here…

This train of thought started when I was doing my weekly Reading of the Blogs.  Some of these blogs are by people I know personally, some are by writers I admire, and some are on topics that are important to me.  A massive collision happened when I read through a writer’s blog about his current adventures (details being unimportant, lest they skew the point), a friend’s blog about a shared event, and an autism blog.

The first emotional response left the train station heading east, achieving a steady speed of 65 mph after ten minutes.  This response was made up of an abstract and strange jealousy, a weird little beast that I rarely encounter in my internal world.  Someone got paired up recently, and I do not like their partner at all – but I have no reason to not like their partner, I have no reason to think there’s anything amiss – and yet I am deeply protective and defensive, expecting that there’s going to be a great deal of trouble in the near future.  I couldn’t possibly have this original person to myself – that kind of relationship is alien to me in the first place – but that this other person was messing with my

Well, there’s the problem.  This someone has no relationship to me at all.  We’ve never even met.  Why am I having this strange, irrational response?  I don’t like irrational responses.  They’re irrational.

The second emotional response left another train station heading north, achieving a steady speed of 85 mph after 6 minutes.  My dear friend reported a shared experience, as I said, but the representation of it was so far outside of my perception that I had to look back and check the date to make sure that it was even the same thing.  And then the ending comment about how things would be after that experience was past was… almost as bad as the thing we’d shared in the first place, if not worse.

Now, to understand this confusion, remember two things about me:  first, no matter how absurd or ridiculous, I will always believe what you say first.  Unless you have a long history of lying to me, I will assume the truth, no matter what, until proven otherwise.  So, I had to sit and look at this thing and ask myself, “Did it happen that way?  I was there… and I don’t really thing that’s… quite what… Is that what other people were responding to?  They thought that this was what I meant?  And what about this part here?  Is that really how I am…?”  It was possibly the shittiest feeling ever, to think that someone assumed enforced ignorance and possible malice on my part.

Or was that just dramatic pause?  Artistic license?  Is that really what is seen?

The third emotional response didn’t slow down as it passed the station doing 90 mph, leaving any passengers far behind.  It’s been running for a long time, and it’s fueled by sheer annoyance, defensiveness, anger, resentment, and indignation.  This one was tied in to the autism blog and a reiteration of the suspicion that I’ve had for a very long time that the onus is on the Autists to understand everyone else, but no one really tries to understand the Autists.

Yes, I know there are countless studies and reports and what-have-yous that try to describe it, and maybe there’s a shift in the understand, but I dare you to take a few links back in Rachel’s blog and not feel rage rising in you, either as an Autist, a relative of an Autist, or merely as a human being.  Empathy as the description of humanity?  The fuck…!?

But then that led me back to the second train (which was approaching the collision site very quickly), and I had to think about whether or not the friend could take into account my condition or their condition, or was still in denial over it, or maybe just didn’t see things the way I did, despite our commonalities… and then the third train barreled down even harder to press into my head that maybe the whole damn thing was just a stupid excuse to not be responsible, which is ridiculous because I’m probably more responsible for feelings than is necessarily healthy, but because it doesn’t look like everyone else’s version of …

And then the first train ran a hitch, jumped a track, jettisoned across the countryside, hit the third train just behind the engine, sending it clear over the mountain in a fiery ball of metal into the second train…

All I really wanted was an application of differential equations so that I could understand gear ratios.

 

I know you were wondering about Daniel

13 Jul

Well, I went in to see the doctor yesterday to get the EEG results from the test we did last week.  The doctor and I do not see eye-to-eye on a couple of points, but besides that, he’s an okay guy. He was straight-forward and laid it on me – the neurologist wants to see Daniel as soon as humanly possible.

It seems that the EEG revealed that our little man may have Lennox-Gastaut Syndrome. If you don’t feel like clicking the link, here’s the skinny:  it’s a rare form of childhood onset epilepsy that is highly resistant to treatment and often doesn’t go away.  (That’s the very short version.)  According to some preliminary reading, it seems there’s a correlation between kids born with cord complications and LGS.  I’m kinda wishing someone had told me that so that I would have known it was a possibility instead of casting around for the last year and a half, trying to figure out why my kid was having progressively worse seizures.

The complicating factor is, of course, the autism.  This is the thing that the doctor and I don’t agree on. He says that there’s no way to assess Daniel for autism because of the presence of the epilepsy. I say that the autism is a separate issue and that there are two distinct presentations that we’re dealing with but that they are independently observable.  The slow development, the difficulty reaching basic milestones, and things like that are all part of what is potentially LGS.  The patterned behavior (doing the same thing in the same order whenever he goes outside or into a particular room), the need for specific instruction, and the weird emotional quirks would be the autism.

The frustrating part for me is that I can see an enormously intelligent kid in there.  I can see him trying so hard to say the words, to find a way to express himself, to even remember what the thing is that he’s trying to identify… and he’s even come up with his own lexicon and pattern of association to work around it.  This is a pretty typical autistic behavior, an indication of that brilliance.  But the epilepsy hammering his brain all the time means that any gained ground is only temporary, and we’ll have to go over the whole thing again later.

I don’t mind that.  It doesn’t bother me.  Even giving him pharmaceuticals at this point doesn’t bother me.

What bothers me is what might come next.  One of the indicating points is how difficult it is to treat.  The drugs only last for so long, and then there’s the possibility of a brain implant or even a corpus callosum surgery, neither of which are happy-fun-time.  It’s a constant uphill battle against seizures that can come out of nowhere, hit like a ton of bricks, and leave the kid reeling for hours.  LGS kids (and adults) are constantly on the prowl for something – anything – that will work.  They have to be.

I remember looking through the epilepsy sites last year, trying to find a direction to even start looking, and when I happened across LGS, I remember thinking, “Good gods, I hope that’s not what we have to deal with…”

(God?  You listening?  Kiss my ass, You jerkwad.  It wasn’t a dare.)

And yet, at the same time, I’ve been through worse.  At least Daniel is here to have this problem.  I know if someone had asked me to make a choice – to let him die (which, as you may recall, quite nearly happened) or to let him live knowing that this would be an eventuality – I would have chosen to let him live, hands-down, bonked noggins and all.  Hell, if that had been a choice for Toby, I would have said the same thing, knowing that he was going to be even more challenging.

Here’s the weird part:

The twisted part of my brain ties it all in to the science-fiction side and wonders if this is part of that next phase of human evolution I keep talking about.  Every evolutionary step has casualties, it’s true, but the strongest contenders for the “next big thing” have to overcome the apparent disadvantages of their mutation/adaptation.  What if this is one of those times?  What if doing something radical like DNA activation or “brain surgery” with Reiki would help his little body adapt to this stage and maybe become the harbinger of a whole new race of genius people (who also happen to be dashingly good-looking)?

Regardless, the fight is not over, and I do not take “screwed” for an answer.  If there is a solution to this problem, you can bet your sweet ass I’m going to find it.

 

 

Loveliness

04 Jul

I had a wonderful evening driving around in traffic for a total of two and a half hours because in the middle of it was a half an hour of fireworks at Kaboom Town in Addison and an hour sitting down at a restaurant with my Lili and Miles.  It’s really all Kira’s fault because I’m not that into fireworks – once you’ve seen the Big Show over the Hudson River in New York, all other fireworks displays kinda pale by comparison – but Lili especially wanted to go, so go we did.  Yes, I opted to leave at around 8 instead of 5, but I couldn’t really see us either sitting out in the 110+ degree heat or camping at a restaurant for four or more hours… it worked out well, though. Miles has great “car questions”.

He says stuff like, “You have the green light to make any movie you want.  What movie do you make?”  Lili and I both named scripts the we’re each working on.  Another question was, “If you could have any superhero or fictitious person as a mentor, who would it be?”  Lili said Batman, I said the Guardians of OA, and Miles said, “Severus Snape!”  We all agreed that his answer was definitely the best.

Recent emotional activities have caused my “head count” problem again.  I’ve always tried so hard not to make the kids live with “empty rooms” – the poignant awareness of missing people – and the best way to avoid it is to talk about those people as the situation arises.  Today while we were driving around, I kept wanting to turn around to talk to … someone who isn’t there.  And I kept reminding myself to tell her something important… but we haven’t spoken yet.  And then there are the dreams…

Yeah… the dreams… it’s been years since I’ve woken up disappointed that the thing I was dreaming about wasn’t reality.  Maybe I just shouldn’t take naps anymore.  Or sleep at night.  :-/

Regardless, life goes on.  Machinations and permutations and nefarious undergoings are… going… on…

I’ve started recording video on the distance sessions that I do with people.  They’re up on my YouTube page, and I imagine they’ll only be interesting to people who are really curious about EFT and Reiki.  It’s a lot of hand-waving and talking – I edited out a lot of dead air, which is why it looks so choppy – but the effects are profound.  I think I go through times when I forget how powerful a modality it is (especially using both at the same time), and then something happens that reminds me all over again.

I think I have discovered a limitation to EFT, however.  Well… maybe not a limitation, but certainly something to consider.

When we think of autism, it’s difficult in many ways to define because there are so many expressions of it.  In one fellow’s case, it’s like the world is constantly separated by a wall, and the experience on the “inside” is very frustrating, isolated, desperate sometimes, feeling the effects of an intense energetic empathy but none of the capacity for developing the coping skills necessary.  On the other side of it, there are autists who very well understand empathy both energetically and observationally, but their responses are based on a non-typical logic that goes against social norms.  For more on that, check out Rachel’s post on it on Journeys With Autism and also take a gander at Autism and Empathy.

Anyway, back to the point, I realized that if an autist is stuck on the other side of “the wall” and cannot energetically or emotionally directly connect with other people, EFT with a practitioner doesn’t really work.  In the cases that I’ve worked with (and there have been a handful), the energetic response is almost like the practitioner isn’t “real”, that their experience, being unlike the autist’s experience, is not true.  This makes it very hard to get in and get work done.  Every now and again, a sliver of opportunity will show that allows a little bit of progress to be made, but on the whole, it’s really a constant effort of beating one’s head against that wall, and for precious little result.

There are, of course, ways around it, but to other people exploring EFT, be aware of this circumstance, and when it happens, stop.  Back away, examine the situation a little differently, see what foundational remedies or therapies might be used first to allay the effects of “the wall” (it is not a “normal” state for autists, merely a common one for some), and only after those other efforts have shown some progress can you get in and get the Good Work done.

I’m not completely sure if “unguided” or “solo” EFT would work for autists in that position since it’s still introducing an element outside of previous experience (one of the weakness points of “the wall”, not letting in new ideas without a great deal of convincing), but it’s worth a shot.  The manual is freely available for all, and it’s not like they could make something bad happen.  The worst that could happen is that nothing would happen.  I’d like to hear about it if someone in that position tried something like this.

So, to tie all this back in with the first part of my post here, I had thought about tapping on that anxiety, and I decided… no, I don’t really need to.  It’s a natural side-effect of my very real and hard-earned emotions, and I choose to accept the good with the uncomfortable.  Besides, it’s only a temporary thing.  I’ll never come up with the right “head-count”, but I know that one day, I’ll get closer.

And in other, other news, this goes out to someone very special:

 

Self-Observations

04 Apr

Okay, I think the jury is definitely out on this: no wheat at all, no HFCS, no food dyes, and absolutely no cheating on this ever. And chlorinated water might be on the list, too.

I’ve been playing it a little fast and loose with the diet, caught up as I have been in the throes of a new and exciting relationship (yes, of the romantic variety!), and I’ve noticed a couple of interesting reactions.

First, eating things on the no-no list turns me into a complete social moron. I don’t know what to say nor when to shut up, and being in an emotional state (good, bad or otherwise) makes it ten times worse. Open mouth, insert foot.

The second thing (and those of delicate sensibilities might want to look away) is that eating no-no foods interferes with sexual responses. Where I normally have an insane appetite and can “close the deal” repeatedly, I noticed a hefty difficulty with that of late. (That’s not to say never, but it hasn’t been easy. Or anywhere near as quick to rebound.) Not great timing, but at least I caught it now.

The third thing is pretty obvious to anyone who reads a time stamp: the Brain Train will not shut down. Tonight, I’ve drawn, written, read and planned, made lists, played games… and now, in bed, I’m still trying to commit things to paper (or electrons, whatever), just to get them out of my head.

Man, I’ve got to be up in the morning, too…

Sometimes the dumb-ass gene kicks in a little hard.

 
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Screw you, Wheat

16 Feb

Hey, look! It's fiery death and doom for me! WOO!

One of the negative side-effects of being on the road every day – moving things to the new apartment, going to work, etc. – is that it’s easy to give in to the temptation of hitting a fast food place when there’s an overwhelming grumbly in my tumbly.  Part of the sucky aspect of having a hyper thyroid is burning through calories fast, which means when the low blood sugar hits, it hits fast.

Of course, this is all my own damn fault.  I could have gotten rice bowls or salad, but that’s just too hard to eat on the go.  (Did you see that?  That’s what we call a “rationalizing argument”, also known as an “excuse”.)

Here’s the price that I pay for eating wheat:  having recently confirmed the assessment of autism, I can definitively say that wheat is one of my main trigger foods.  The more wheat I eat, the less I’m in control of my facilities.  When I eat wheat, I have a harder time choosing to be compassionate or loving, I get grumpy and hang on to the grump, and most importantly, I forget that I have the option to choose.

This is, of course, just one aspect of it.  There’s also the weird hormonal shifts, the thyroid getting pissier, and we’re not even going to get into what it does to my colon.  What makes it worse is that it’s a self-perpetuating cycle because the presence of a trigger creates a craving for more of the trigger when any is allowed into the diet, even as a “treat”.

After re-testing just now, I can tell that my entire list of triggers is not long, but it’s a doozy:  wheat, corn, high-fructose corn syrup and food dyes.

Making this definitive assessment of autism has done enormous good for me.  It’s allowed me to forgive myself for not being “good enough” in the areas that I fall short in (while I observe other people flying through them) and it also gives me permission to excel at the things that I am good out without apology.  I’ve apologized a lot in my life for having my little bits of genius, and this past week saw a huge mess of what I call the Monster coming out.

The Monster is the piece of me that says that I lead a completely uninteresting and uneventful life and that I’ve “made up” every amazing thing that’s ever happened to me – good and bad alike.  It’s the part of me that says that no one gives two shits about my opinion, that what I think matters less than an ass pimple on an ant, and that I’m unattractive, unappealing, impossible to live with on any level, and that every bit of success I’ve ever pretended to enjoy was purely a matter of conning someone into accepting a lie that I’ve made up, and that the jig was up when I was “found out”.

The Monster, by the way, is completely dead wrong on every count.  I have witnesses.

During times like this, I rely on those witnesses a lot, like when I had to ask my dad a few months after Cassidy was born if I’d actually had a kid.  I’m not kidding.  I was such a victim to the Monster at that point that I seriously questioned my reality-observing sanity.  That’s how dangerous this bastard is.

As my lovely soul-sister is through her own immense process of growth and resolution, the energy field she (we) creates puts me in a place to realize my own healing crisis.  This is probably why I didn’t recognize last week – which was a pretty monumentally shitty week, by the way – that the correlation was not just correlative but exacerbative.  (I can’t say “causative” because the “cause” – the root problem – is a neurological condition that creates an environment for vulnerabilities.  The vulnerabilities themselves are not the “causes” of the reaction.)  I don’t crave wheat because I’m feeling pissy – I got a little wheat, started craving it, and that’s what created the snowball of pissiness.

Here’s an even more interesting observation, and I’ll be reporting more on this as time goes on.  NOTE:  This is JUST an observation, maybe a theory.  I am not drawing a conclusion, and you shouldn’t, either.  Check this out:

Under normal circumstances, the universe does amazing back-flips to accommodate me.  Things come up out of nowhere to make my life a little easier, to keep things going.  Sometimes it doesn’t seem like a lot of wealth is being enjoyed, but we always have what we need, and sometimes even what we want.  When I get all “et up wit teh dum” and start eating wheat (or corn or other things), things start falling apart.  Situations I don’t even have a direct vested interest in crumble, seemingly just to make my life difficult.  Jobs fall through, time conspires against me, injuries and accidents happen (and by this, I mean accidents triggered by random elements, not things that we could have avoided ourselves).  Our reality is created by the way we think, and when I’m in a funk, a very real and immediate sucky reality is created.

Hypothesis of the Universe of Me:  Wheat = Bad Reality

Hmmmm… for every reaction, there is an equal and opposite reaction.  The Law of Balance and Duality states clearly that all elements to the positive are countered by a negative, and vice versa.

If eating wheat creates my life energy in a negative or destructive form, is it possible that there are things I can eat specifically to create that life energy into something positive and constructive?

(That just came to me.  Maybe it’s turning into an actual hypothesis…)

Also, I now suspect that a percent of cases of IBS are actually celiac-like reactions, possibly connected to autistic conditions.  I’m certainly going to talk to my mother about it, who has suffered through bouts of IBS for many, many years.

So… yeah.  No wheat for me.  Or corn.  That’s what my Monster eats, and I definitely don’t want to feed the Monster.