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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vindication

it’s a strange title for the piece i want to write today.  it’s a strange notion on its own.  still, it is the overall feeling that i took home from the recent trip to maryland for the gender spectrum east symposium.

first let’s look at the word in this definition from merriam webster dictionary.

everyone clear? because all of the various meanings in this entry are what i feel upon reflection of the past few days events.  but i suppose first it would be fitting to explain a few of the reasons, or circumstances, that preclude the need of vindication.

first there is the fact that my daughter is both transgender and autistic.  as regular readers of my blog are aware.  this in itself would not require a parent to have a desire to feel vindication.  but any good parent has doubts as to the child-rearing methods they employ.  we all want to ‘do right’ by our children.  and there exists no dearth of opinions both for and against the way in which we proceed.

this is especially true of parents whose children are “divergent” (by the way, this movie by the same name is a good allegory for our society and its fear of those who don’t easily fit its slots)

we are held up to scrutiny by strangers, by family, friends, and by professionals that believe we should do things their way.  sometimes well-meaning individuals even feel it necessary to report us or our methods to child protection services.  and frequently doctors, specialists, teachers and other ‘authority’ figure types try to bully us into changing our way.

for example, right after the very first vaccination given to zee, she began to have terrible seizures.  they lasted for about 12 months, terrible at first, then tapering off.  i knew that it was caused by the shot… i knew i would never allow another vaccination to be given her.  and of course, you can imagine the flack i have taken for this decision.  but many children who have a ‘bad reaction’ to the ‘shots’ are subsequently diagnosed with autism.  now there is no proof by which i can feel vindicated in this instance,  but she no longer has seizures, and has never had a sick day in her life…even when other children, vaccinated children, were coming down with things the shots were supposed to protect against.  no measles, no mumps, no chicken pox…no dreaded flu or whooping cough.

but as to my decision to homeschool zee, i have often heard the same caution.  it goes something like:

“well of course, one on one education in the homeschool situation is good for learning most things…but what about socialisation?”

even the most well meaning of my friends and family, as well as counselors and professional people have raised this question.  but in my experience, schools are horrible places to learn socialising skills, especially for the ‘divergent’.   there are  bullies,  teachers often don’t have the time or inclination to intervene, and one is not rewarded for socialising during class time…but rather, is punished for it.

i’ve not had opportunity to know whether  or not i was depriving my daughter of this skill, one that is already difficult for many autistic people.  then this magickal weekend at the gender spectrum event happened.  and unlike the previous one she attended in berkeley, (where she didn’t have much of good show of those skills) she was an absolute butterfly!  even the volunteers that looked after the tweens were pleasantly surprised at how unguarded and open she was.

for my part i was nearly blown away, when she, faced with a tight squeeze to sit at the craft table and make her name tag, paused only briefly before shrugging it off by saying:  “well, socialisation is important for me so…”  even two years ago this had been a nearly impossible feat for her.  lack of schooling in a public school hadn’t crippled her after all…and being autistic, which often means social awkward-ness, 10628112_594366457359671_3795345244803197134_n 10151146_594366544026329_4318594729212057215_n 10734180_594366524026331_6456139925374766851_n had not stood in the way.

there is another aspect to this weekend having given me a sense of vindication.  the other transgender children…and their supportive parents, family and friends.  seeing acceptance in action, the good it brings, both serves to prove to me that the path we have chosen is the right one, and give me hope for the future.

i had a couple of experiences recently that make me want to vent…but for today’s post, i just wanted to bask in the glow of vindication.

 

 


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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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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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one can dream

many parents become anxious for this time of year…the time when the kids go back to school. we homeschool, for a number of reasons, and so back to school means back to the grind for me.  but i do try to make the experience enjoyable for us both.  we decide on electives together…this year we’re learning japanese and python….we use internet and videos for studying science and history especially…we choose art projects together and often plan a mid-autumn get-away to go caving or something.

it is frustrating to wear the hat of teacher and parent sometimes.  still, i wouldn’t have it any other way…not just because i don’t agree with the methods of teaching in public schools.  but also because it is a harsh world in public schools for children who are ‘different’ … there are bullies their own age with whom the must contend, there are even adults whose aren’t ‘cool’ with the ‘different-ness’  of our kids.

ziona has autism, but is very high functioning.  she does however have difficulty with nuance and socialisation among her peers.  which leaves her as the ‘odd man out’.  but the real danger for her in a school or other situation as loosely monitored as are classroom and playground, is the same one that she will have to eventually face nearly every day of her life.  

transgender women, in the world as it is today, are never quite ‘safe’ from bullying or attacks. as a mom  this is an overwhelmingly terrifying fact of life.  knowing that no matter how well i prepare her, no matter how savvy or strong she may eventually grow to be, there will always be the danger of her being judged, bullied or even viciously attacked just for being herself.  

i haven’t broken this to her yet.  i don’t know how to broach the subject of how horrible people can be to those who are different.  i don’t want to tell her how much more likely a transwoman is of being attacked or killed. i want to protect her from the fact that there are even other women who will judge and exclude her,  speak ill about her and shun her, just because she was born with a body that was a betrayal of her soul. i just don’t want her to have to worry about such things…not yet. 

still, one day i will have to begin to help her know about the dangers…one day, as her teacher and her mom, i will need to prepare her for the time when this nice cocoon of living and learning at home will come to an end, when she will spread her wings against the skies of her own tomorrow…i will need to help her know how to defend herself, in ways that other parents of cis-gender daughters never have to consider.

i guess there’s still time before i have to break the news to her…about how ugly the world can be.  in the back of my mind i hold out hope that the world will change…become a kinder, gentler place before she must fly the nest. and in fact, there are many good changes coming about.  transgender women role models are popping up in the most public of places…as actors, athletes, directors, musicians, doctors and politicians!  so maybe in the decade we still have before she is out on her own, the world will have changed…become safer.  

one can dream!

 

 

 


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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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a light in the darkness

amidst the very mixed news regarding all things transgender came the awesome news this week, that medicare will begin to pay for treatment of gender dysphoria, including surgery.

this is awesome news for us! we are at the place as of this month, where such things as puberty blockers and much more counseling are the reality.  and since ziona receives medi-caid, this means i won’t have to wrangle and threaten lawsuits to get them to pony up the dough.

it is good news for every transgender person!

so altho there are still small minds out there that don’t understand what it means to be trans, at least the rules have been changed in favour of those who must put up with small-minded folk.

of course, there may exist a few more battles in acquiring this treatment for minors.  but it just got much easier to care for and support the needs of our transgender children.  if one cannot be kept from having a life-saving and time proven, non-experimental therapy as an adult, the same treatments cannot be withheld from pre-adults…i hope.

so we are on our way as of the end of this week.  ziona will be seen by her team at the ucsf child and adolescent gender clinic.  she has already been assessed as ready for the puberty blockers, and her psychiatric therapist has already deemed going forward as absolutely necessary to her health, and well-being.  and now, the expense will be covered as well!

so despite the nay-sayers, the small minds, and the previous reluctance on the part of medi-caid to cover expenses, she will as of this month begin drawing closer to the goal of being ‘all girl’, as she calls it.

a light shining through the darkness, for ziona….and many others!


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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.


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if only i didn’t love her

today we, ziona and my self, spoke to her psychiatrist for gender dysphoria in advance of our trip out to university of san francisco for her appoint at the child and adolescent gender clinic.  dr. giamattei asked me something that i almost never hear: “what are you doing for you?”

having a transgender child is worrisome enough. there are hurdles and protocols, expenses that often one must fight to have insurance or medicaid pay…there is the pain of watching the child’s pain about something beyond our power to reconcile.

it’s not like when they’re sick, and feverish, … so that an over the counter pain reliever or febrifuge will suffice.  it’s not like when they’ve fallen down and skinned their knees, when a bit of healing salve and a kiss to make it better helps.  it’s not like when someone at school has been mean or unfair to them and you march right down to wherever to stand up for them and demand an apology.

there’s no one to speak an apology for what has happened to ziona.  there’s no medication to alleviate her pain.  and all the kisses in the world from ‘mom’ or anyone else can’t make it better.

things like puberty blocking implants are only a first step…the one we are at these days.  then it’s down to waiting again. for time to pass, for the magickal age at which she can start cross-hormones. and then another wait. it will be at the very least, five whole years before she turns 16, when a surgeon who has already agreed that ziona should get the reassignment that early given her level of dysphoria, can give her the rest of what she will need to feel whole.

because ziona is also autistic, and has issues with self-calming and ocd, this whole transgender thing, this condition, is even harder on her than on a child who is able to ‘take a breath’…to let this ‘wrong part’ not be an overwhelming thorn in the side,  one who is at least capable of  avoiding a melt-down when the unavoidable pop-ups (erections) occur.

yes,…it hurts us as parents when we must stand by, with nothing whatsoever that we can do to alleviate our children’s suffering…it hurts…and i don’t know what to do for me.  for the frustration i have that time doesn’t go faster, that i can’t wave a magick wand and change her into the girl she is. i don’t know what to do for me, to make me okay with the pain i see her going through every day.

if only i didn’t love her…


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on pins and needles

there are few things that hurt a parent more than bearing witness to their child’s pain.  the depth of love we feel for our children touches us to everything they must endure…a fever, nightmares, hurt feelings when another child betrays them, bullies them…the frustrations they encounter are our own, the diseases they contract we’d gladly take upon ourselves to spare them pain.

my daughter was born under a sentence…one that was unfairly imposed upon her…one that only grows more painful with the passing of time…the words: “it’s a boy”.

she’s not a boy.  altho it took 3 1/2 years for her to be able to tell me, and another couple of years for me to hear it, she is really a girl…

since 6 years of age she has been living as the girl she is, dressing in the clothes she chooses, her hair down to her butt almost, everyone using the proper pronouns in referring to her…even the name she has chosen as her own…all add to her identity as a girl. but of course, there are body parts that aren’t a girl’s parts.  and lately these have been causing her mountains of pain.  you see, she has reached an age where erections have become frequent, and the testicles have begun to fill out.   i can’t imagine how much this must bother her, how unfair it must seem to her.

so she has once again, as she did when she first found out that the ‘boy parts’ (her words) wouldn’t just fall off some day, begun verbalising a desire to ‘cut it off’…and verbalising how she’d rather die than have these parts.

her dysphoria is intense!  no matter that she knows there exist some transgender females who are not opting for surgery to change them, who know they are girls no matter what parts they do or don’t have,  she is adamant that for her surgery is a must…she wishes we could lie about her age so that she could have it done yesterday!  no matter how much she understands that these ‘parts’ are really her ‘girl garden’… one day to be used to fashion her new and more fitting parts.

she is into tanner level 2 now.  a magickal assignation for transgender girls because at this stage she can be placed on testosterone blockers, or puberty blockers…she hopes that these will stop the ‘stiffies’ (again, her words) that she so hates for the reminder they are to her of that sentence she is under…the one spoken when she was born.

it means she will either get an implant or have monthly injections to stave off any testosterone changes,  hair growing where girls shouldn’t have it, voice deepening, bones lengthening, hands and feet getting large, an adam’s apple…all the things which that hormone would do to further rob her of her identity as a girl.

so in just under a month, we will be at the child and adolescent gender clinic at ucsf discussing which method we will use for delivery of the gnrh…and when to begin the subsequent cross hormones that will usher her into puberty as a girl.

i hurt for her, but i can’t really know her pain…i’m a cis-gender woman, i’ve always had the parts that affirm my identity as female.  still, i am as anxious as is she to get this show on the road, so to speak.  to take the first steps to move her toward a goal she knows she must attain if she’s to feel completely ‘good’ about herself.

until then we’re both on pins and needles!