Pasupatidasi's Blog

thoughts, poetry, life as it is…


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autism and monologuing

My daughter is autistic…she prefers this way of saying it, because she has owned the various traits that set her apart from neuro-typical folk like myself.

 

It’s important to acknowledge a person’s right to self-definition, so this is how i say it…

 

And it’s amazing the intricacy of the distinction…one is a statement of being, one is a diagnosis.  No one should be reduced to a diagnosis.

 

That being said, instead of saying ‘autism presents along a spectrum’, i say autistic persons each have their own unique qualities.  Even if some or many of these qualities are held in common with other autistic people, one needn’t consider and entreat them as symptoms, anymore than one would say of neuro-typical folk that they ‘present along a spectrum’ and then begin to define them according to what they can or cannot do.

 

This post is about how my daughter’s conversations, when she chooses to engage in them, are not dialogues…she, like many other autistic persons, monologues.

 

There are too way many instances that could i could relate to describe what this monologuing entails,  how it differs from dialogue but is communication, no matter how dissimilar it is to the conversations of neuro-typs like myself. But yesterday was a perfect example, so i will tell that story.  Then, dear reader, just know that this describes most, if not all, of her conversation.

 

Yesterday…there was an event for a bunch of homeschooling parents and their kids to attend a bbq, to get to know one another. Most of the kids found their way to places to congregate together, away from the adults.  It was no surprise to me that Ziona did not. Instead she did what she usually does, found a place away from the crowd…she may come by that naturally enough, as that is my usual ‘gathering mode’ as well. She usually prefers to hang with the grown-ups, admitting that kids either bore or confuse her, so even tho i had scheduled the event as part of our homeschooling under the heading of social skills, i wasn’t surprised when she found a table full of adults with whom to hang.

 

What was interesting to watch was how other people responded to a child who didn’t really converse, despite the fact that she was talking.  One would ask, “oh, how old are you?” or “what grade are you in?”, she would barely answer them before launching into a monologue about one or the other of her favourite areas of interests.  “Did you know that archeologists almost all agree that even T. rex had feathers of a kind?” *adult hmmms says “oh?”*  yeah, and birds are really just modern day dinosaurs that survived the extinction 65 million years ago, and—–”

 

She’ll go on forever.

 

I’m used to having precious few dialogues, actual give and take dialogues with her, and i live with her! The only way i get that sort of actual conversation is if i make it part of homeschool lessons, which of course, i do.

But as i was watching this – to me very familiar scene, it occurred to me that whatever the interactive back and forth commonly found in the conversations and dialogues of neuro-typical folk, and no matter how utterly unlike such conversations this was – she was communicating, nonetheless. She was recognising and relating to another human being, altho without the eye contact. She was sharing of herself, much more about herself than do we neurotyps when we voice platitudes or speak of things like the weather.

 

It was exhausting for some, i think  –  judging from their responses to her monologuing.  A fact of which she, with her lack of ability to unravel the duplicity of social nuance, was never aware.  But as i snuck glances at her captive audience, i could pick up on a non-verbal, “god, she just keeps going on and on”, as one by one, the chairs around the table offered up their occupiers, who politely found ‘somewhere’ else to be.

 

By way of acknowledging this ‘trait’ which Ziona shares in common with some other autistic people, i offer you this from ‘the silent wave’ .

 

so , yesterday, for homeschool…i got schooled! Because i finally realised just how much  Ziona’s monologuing says about her interpersonal skills…how much more she communicates and shares in this way, how much more she explains of her self and her reality to the those who share the world around her. My own shallow and rehearsed interpersonal dialogues with others seem to fall far short of really reaching out and touching in comparison!

 


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framing our own narrative

i’m gonna rant…it’s been coming for awhile now.  it’s about all this business about where one is allowed to pee.

disclaimer: i am a cis woman and so privileged. i no longer wear my head shaved, so face no challenge as to using the appropriate restroom.  but my daughter is transgender, a beautiful 13 year-old transgender girl. so it’s not as tho i don’t ‘get’ why the issue is important.

here’s where i have a problem with this. since all the hoopla about bathroom rights has been going on, other major issues with regard to trans-persons have fallen off the radar in a big way.

no more worries, it seems, about the much higher incidence of homelessness among trans-folk, or the much higher suicide rate, or the fact that many in the medical profession and insurance agencies routinely deny the treatments and medications necessary to transgender people, this despite obama’s ACA having passed.

no more about how many transgender people are being killed, for nothing more than the hatred and bigotry rampant in society towards them.  just to ‘be’ seems a thing not allowed to some, never mind ‘to pee’!

now, i get that it IS a big deal that unenlightened sheeple fearmonger their way into seeming justified in denying something as basic as a bathroom break, but it seems to me that the narrative has been altered.  altered in such a way that the worst elements of life while trans have fallen to the wayside.  and instead of coming from a place of power, the right to self-definition, self-detemination and even self-defense, now transgender folk are put upon to defend against the notion that they are perverts.

this is a drastic departure from the narrative that is true, which is that transgender folk are normal human beings who have certain inalienable rights, just like the rest of us.

so in my mind, it’s time to piss and get off the pot.  don’t throw away all the progress toward an empowered future.  reclaim and reframe the narrative.

after all, there are way more congressmen, senators, and preachers, who are fond of using public restrooms for prowling. and there are countless sundry other perverts who really are dangerous to our children.. in the bathrooms and elsewhere.

so can we talk? about unemployment, healthcare, suicide, hate crimes, murders and such as transgender people fall victim to…instead of pretending that their trans-ness makes them predators?


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How the Pro-Vaccine Side Lost Me: posted from another blogger

How the Pro-Vaccine Side Lost Me.

altho i never used to think twice about vaccinations for my kids, ziona being injured by hers left me to research, and rethink, everything i’d never questioned before.

kudos to this blogger…for having the compassion to broach the subject in these times when having one’s own mind about such a thing can subject one to ridicule.


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in the air

spring is definitely in the air around here.  but that isn’t what i am writing about this day…

instead, this is about things in the air, or rather ‘on the air’ … the media.  media coverage of things can do many things, not all of them good.  but it can tell the truth about issues that are largely misrepresented. and that’s a very good thing.

lately one of those things is about transgender people.  folk already know that it was due to a barbara walters special on transgender children that aired in april 2007 which led to the beginnings of a much happier life for my daughter, ziona.  when she told me she was a girl, i had no idea how to help her…until then.   the airing of that program actually started me on a research journey.  ordering books from amazon.com such as ‘the transgender child’; calling boston children’s hospital to speak with dr. spack’s clinic; and scouring the internet for anything to help me understand how to support my daughter…how to ease her pain.

that’s one thing about transgender people, old and young, that cis-gender people don’t and maybe can’t understand.  just how much pain is experienced…

every good parent ‘feels’ their child’s pain.  we fret over every fever.  break out the chicken soup and lose sleep until our little one feels better.  when they are bullied or have their feelings hurt by their peers, schoolmates and such, we want to take their pain into our own souls and perhaps sternly reprimand someone else’s child for their insensitivity.  we cringe when we clean out the gravel from their skinned knees. so you can imagine how heart-wrenching it is when the ‘booboo’ your child has is one of being a girl or boy in the body of the opposite gender.

ziona was suicidal at three.

altho, i’m not usually the optimistic type when it comes to human nature, i can’t help but to be very hopeful at the recent and even upcoming media representations of transgender people.  the series “transparent” on amazon…chaz bono, janet mock, …just google ‘transgender media icons’ and lists of role-models for our transgender children come up.  and that’s a very good thing!

my daughter is well on her way to becoming the girl she was always meant to be.  i had an ear to hear her words and a heart to feel her pain.  but were it not for media covering this ‘thing’ of “transgender kids”, who knows how much more pain she would’ve had to endure.  like my many transgender adult friends who had to suffer through puberty in the wrong body…and for transgender women, the many irreversible effects of testosterone, which mean more difficulty in being ‘read’ as just women.

so i am delighted with the media bringing the promise of a better day for transgender people.  just google ‘transgender documentaries’ or ‘programmes about transgender kids’.  i am hosting a woman who had found herself ‘homeless’ after she divorced her wife and disclosed to her family that she is not a man, but a woman. she has been approached to be part of a new documentary which, if she is chosen, would help pay for her transition…she has recently gotten a job and no doubt will be finding her own place in the near future.  but to afford the cost of transition in a state with no obamacare or find an insurance companies that will pay for it isn’t easy.  and who really has extra tens of thousands of dollars to afford it on $13 dollars per hour.  i hope they pick her, of course.

our culture and in fact the ideas many people have floating around in their brain-pans are largely infused by media.  the television programmes and the movies tend to be very good at imprinting people with values that are represented.  this can be very bad at times. for example when the news drum-beats for war, or commercials make women feel ‘less than fresh’ in order to sell them something. but it can also be good, when the invisible becomes visible, when the light of our collective attention is poured out in a dark place.  programmes that tell the stories that have been ‘left out’ … or wrongly portrayed, programmes that educate about things that are misunderstood, are a way forward and a welcomed relief to the ignorance and bigotry that might stand otherwise unchallenged.

yes, there’s something in the air these days….and it makes me very hopeful


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Jazz,…forever!

read this…then read on

 

there are quite a few role models for transgender girls…many of them are already all grown up and in the public eye, like laverne cox…laura jane grace, julia serrano…so many.  but for ziona and i, there is one who stands above the rest.  one whose story gave meaning to what zee was going through…and gave a clear way forward to the mother at her wit’s end who had no idea as to how to help her child.

at a time when my child was despairing over having been born in the wrong body, and i was scratching my head as to what was going on,  jazz jennings shared a special and very personal story on a program hosted by barbara walters.  the segment was called, ‘my secret self’ and jazz was among the young people telling the story of gender identity disorder.  it aired here april 27th of 2007…6 months after ziona had used what little language her autism could allow her could  muster, to explain to me the pain she was going through…the reason she wanted to die. (so god could get it right next time and zee have the girl body to match her girl self)…she knew she was a girl!

because of jazz and her family being brave, honest, and open about their experience i knew what i had to do and how we needed to move forward.  i needed to believe her…and she needed to be allowed to be the girl she was born to be.

now zee is on puberty blockers to suppress the irreversible effects of testosterone, and is anxious for the day that she can get cross hormones, to grow breasts (but not too big, she says) and of course, she lives for the day that surgery will complete the process of her transition…for ziona, nothing short of the whole package will do, even tho she knows that she is already  a girl to me and everyone else she knows. for ziona, having a body that perfectly reflects that reality…a body without any parts that belong on boys, is an absolute necessity.

without my having just so happened to be watching t.v. that night…without that jazz and her family had shared their story, and that barbara walters as host had lent the matter a serious and legitimate air,  who knows what ziona’s reality might have been!  because, even though i’ve been a part of the queer community for decades…it had never occurred to me that a child of 3 years old,  my child…would have such a hard row to hoe!

so yes, there are many to whom young transgender girls can turn for examples of how to hold their heads up high, accept themselves and be proud.  but for us, jazz will always be a sort of trailblazer entity…a girl, who like zee, just knew…and who shone a light in our darkest hours, that led us forward to brighter days!

thanks jazz!  forever


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“so i’ll remove the cause, but not the symptom!” doctor frankfurter, ‘rocky horror picture show’

so this happened…

i’m quite disappointed.  despite all the recent gains, despite positive role models being plastered on the cover of ‘TIME’ magazine, and with the advent of rights such as medi-care and obama-care covering transgender health issues, or the advancement in some states to replace laws that restrict gender marker and name changes on birth certificates, it seems no matter what progress arises there will always be affronts to the dignity of trans-folk.

this is why i try to educate people in my little area of the world…and broader plains where i am able. it is also why ziona refuses to be ‘stealth’.  perhaps it’s her autism and resultant lack of adherence to social norms, or simply her fighting spirit, but likely it is also her sense of right and wrong that make her adamant about NOT hiding who she is, and likewise NOT being ashamed.  she gets righteously angry at slights, slurs and especially outright wrongs done to people just because of who they are.

her indignation extends beyond her own group.  she is angered by all manner of bigotry: racism, sexism, ageism, looksism, sizism…so many ‘isms’ to reject, so many to fight.  and in our discussions about such things as these, we also talk about the best way to combat them, identifying their roots and identifying their causes.

but even if we remove the cause,(ignorance)  it seems the symptoms remain…a rather dire prognosis if we don’t also find a cure for hate and bigotry.

“so i’ll remove the cause, but not the symptom!”  doctor frankfurter, ‘rocky horror picture show’


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a ‘passing’ grade

just wanted to share this awesome Janet Mock article with any readers of this blog.  

now to rant.

i hate the term ‘passing’ as it is applied to transgender people! we are so looksist and sexist in our society.  when people use the term ‘passing’ for a transgender woman, what i hear behind the words is: “he really looks like a woman”   

no one worries about how i, as a cis-woman, ‘present’.  i can wear pants and no make-up all day long, be as frumpy as i please and no one challenges whether or not i am a woman.  no one questions that i ‘pass’.  so i can’t imagine how unfair it must seem for a transgender woman to be held up to some unreal standard of ‘passing’.  i’ve heard the saying that gender isn’t between the legs, it’s between the ears.  i totally agree.  so where does ‘passing’ figure into it?

it seems a back-handed compliment at best and not very trans-friendly to judge whether or not a woman makes the ‘passing’ grade.  

some of my older friends who are transgender tell me that my daughter is lucky to be receiving puberty blockers that will keep her from suffering the irreversible effects of testosterone.  that she will be able to ‘pass’ much easier.  but i feel that it’s a shame that it’s such a big thing.

of course, this is all a very cis-gender attitude to have.  after all, with or without make-up, i am read as a woman, and there’s no danger that a man, who has felt attracted to me, will later feel betrayed and angry enough to beat me for not being a ‘real woman’.  i will not have a job interview go south because i don’t ‘pass’.  i will not be followed home down a dark street by dangerous idiots that taunt me as being a ‘she-male’.

whether i think passing matters or not is of little consequence.  but i look forward to a day when no one worries about such a thing.  when a woman is a woman because she says so! when that is enough! i look forward to a day when ‘trans-exclusionary radical feminists’ realise that their own ‘womanhood’ is not more than that of a transgender woman.  when society lets go of a need to judge…

i look forward to a time when people are more concerned about their own being able to  ‘pass’ for a compassionate human being.


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waiting to exhale

it’s been a whole month since my daughter and i ventured west to california, an annual pilgrimage for us –  not just because we still have a place in the northern mendocino mountains, because these days we kill two birds with one stone, merging this ‘vacation’ ritual with appointments at the UCSF child and adolescent gender clinic.

but this year was special!  this year ziona reached the inevitable  ‘tanner level 2’.  that means that she was ready for the next step in her journey to her true self.

in the months leading up to this visit, ziona had been very distraught over the increasing ‘pop-ups’ of the part of her anatomy that betrays her.  the level of pain this caused her psyche apparent in the renewed threats to simply ‘cut it off’.  all day long that unruly and incorrect member beset her young mind with the constant reminder that things are not as they should be.

now it has been a month since the magickal implant was placed in her arm.  and the difference this has made is amazing.  tho results are individual, the relief of her ‘symptoms’ is already huge!

the first week was horrible! she kept on expecting that she would be free of the erections and the growth of the testes would be immediate.  she accused the implant of being a dud.  she cried every time a ‘stiffie’ raised it ugly head.  she begged me just to bring her back to the clinic and insist that an orchietomy be performed.  her anxiety that nothing would stop the onslaught of male puberty nearly consumed her.

i explained to her that it would take some time for the vantas implant to get into her system and shut down testosterone producation.  and altho i had faith that this was the case,  i found myself as on pins and needles as she seemed to be.  so i held my breath, hoping i would be proved right, the sooner the better.

so here we are now, a month later.  the testes are visibly retreating.  the horrid erections are nearly non-existant any more.  my beautiful daughter is far less anxious about the process and protocols that we are following, far more convinced that we will be able to make sure she doesn’t grow a beard, or develop a deeper voice.

on our way back home we visited with a good friend of mine, one whom i’ve known for eternities i’m sure, one who just happens be transgender.  altho dropping in on her had much more to do with my self wanting to reconnect with Candy after all the years, it served as further evidence that surgical gender transformation would eventually liberate ziona to become fully female as well.  it felt almost like a part of her was reassured in a way that simply telling her how this whole protocol worked could never quite do!

we skinny-dipped in a pond at my friend’s house.  so ziona saw a beautiful transgender woman, who had shed the cocoon of her former self and become who she was always meant to be.  the visage wasn’t wasted on her – she almost seemed to breathe a relieved sigh.

as for me, after feeling as tho i’ve been holding my breath for many months, i can finally rest a bit easier.  we have put one foot in front of the other on the path that is unfolding before us, and i’m no longer suffocating…no longer waiting to exhale!


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the right gender

a person, whose blog i regularly read, posted a wing-dinger  the other day.  everything from political correctness to language policing and beyond made up part of the excellent read.  as usual the blogger did a very good job slicing through the subtleties of how acceptance is doled out or withheld to those within their own sub-culture. but the first paragraph really got me going.  because in it, this tidbit came to light: some transgender folk actually dare to wish they weren’t trans.

apparently, in today’s “oh so politically correct” world, not only is it frowned upon to make a difference between transgender or cis-gender, but if one is a member of the former it is abhorred to long to have been born into the latter!

my transgender daughter spends most of her days NOT thinking about being trans, (in fact she doesn’t much identify with the term) but wishing she had been born the girl she is.  and it seems that is taboo by some within the T community.  it is abhorrent and worthy of a severe reprimand from some.

but here’s the thing, i find it rather disingenuous to be up in arms, as it were, against those folk honest enough to to admit that they wish for an easier time of being who they are.  don’t we all who struggle, for whatever it is that we want so badly and don’t have, wish for an easier way of getting it?  people who are very poor might wish they’d been born into a family with wealth.  is that loathsome too? is it wrong, when life seems to have wronged you, to wish it weren’t so?

my daughter wishes every single day that she’d been born in a girl’s body!  is that really a reason to be hated?  should she have to be ‘trans and proud’ in order to garner the respect and support of others?  because she’s not proud of having the ‘wrong parts’…she’s horrified!  she lives for the day that modern surgical techniques can make right the wrong done her by her very own body,  its betrayal of who she really is!

if assimilation is wrong, why do so many transgender women and men do so much to ‘pass’ as the gender that is between their ears?   must transgender folk all be card-carrying members for life, wearing the “T” on their sleeves in order NOT to be set upon by other transgender types?  after all, in my daughter’s mind,  being transgender is a temporary condition.  one that will be a landscape in the rear-view mirror someday.

even after ‘the surgery’  i know that she will need cross-hormones for the rest of her life, and that no matter how much of a girl she looks, behaves or identifies that there will be those in the lgbt community and society at large who feel it their place to judge and criticise her.  under these circumstances, who wouldn’t wish they’d simply been born ‘the right gender’ to begin with?

 

 


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if tears could but heal

as loving parents, the pain our children feel is our own in a way…a deep way.  my daughter is going through pain i wish no child ever had to feel.  and there’s nothing i can do but stand by and hurt right along with her…

except i can’t really know how hard what she is going through is for her.  she has a body that every day tells lies about her.  that says, ‘you’re not what you think you are’.  the part of her she most wants nothing to do with seems to have its own mind…it has its way with her.   it jumps up and slaps her with the most unkind reality.

entering into tanner level two means that we can move forward a bit now.  we can get the puberty blockers that will stop her from developing the irreversible male traits testosterone would cause. and that’s a good thing.  but this level has also made her acutely aware of her helplessness in the situation.  every morning and often throughout the day, the penis she wants no part of makes itself hard and even harder to ignore.  she is crushed every time it happens.  she wants so much just to cut it off of her body.  i talk her through it with the same words every time.  that cutting it off would injure, maybe even kill her.

the problem is that she is in such pain that death seems an option for her.  she would rather be dead than have to go through what she is dealing with.  she threatens suicide.  i watch over her closely,  remind her that the problem of her having the wrong parts is temporary, fixable but that death is forever.  the words echo and clang around …so many empty cans kicked down the alley.

lately she sleeps, way too much.  i know why.  when i was in prison i wanted to sleep until my release date.  this is what she is doing.  she even admits that she wishes she could slip into a coma until   “after the surgery”.  she is every bit as much in a prison as was i.  though mine was only steel bars, walls and barbed wire fences, and mine was one i had earned.

her prison is far more constraining.  and she committed no crime justifying the sentence against her.  how i wish i could free her this moment! how i wish i could wave a magick wand and change her into the girl she will be.  how i wish it were possible to get the surgery done yesterday!

but i am as much a prisoner as is she in all of this.  my hands are bound, and i have no power to open the gates that will set her free.  there are protocols that are in place for good reasons.  there is a prescribed way forward that unfortunately must include time.  time so unkindly slowly passing between now and the day she can be under a surgeons blade.  time that doesn’t speed up no matter how much we want it to.  circumstances that depend upon time for their resolution are always most unkind!

this is a depressing read, i know.  and if anyone is still with me by this point please understand, i will get her through this.  i will keep her safe.  but how can i alleviate the pain she feels?  my own heart sinks below the horizon of a future that seems so far out of sight!  i am torn apart!  whereas she can temper her sadness with anger about the situation, i haven’t the benefit of this.  instead, feeling every bit as frustrated that so much of her being made whole depends solely on the passage of time and the reaching of a certain age,  standing helplessly by without remedy that can soothe her, i bleed from every pore of my being.

if these tears could but heal.