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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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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15 Infants Reported Dead in Syria in Drug Mix Up – PNC Voice | PNC Voice

this is shocking enough…surely the powers that be will make it look like it’s a rare happening…

but what about the girls paralysed or otherwise suffering after the anti-hpv vaccinations, what about the neurologically impaired or autistic children after the hep. B vax given at birth, or the dpt…the mmr?

surely the recent revelations of the CDC whistleblower who helped to publish fraudulent papers about the ‘no link between vaccine and autism’  should give us pause.

i never get the flu shot, and i never get the flu…my mom gets both every year one after the other…

i think it’s safe to say that one should think twice before letting a strange substance be injecting into one’s body!

 

15 Infants Reported Dead in Syria in Drug Mix Up – PNC Voice | PNC Voice.


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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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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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i hate monday.

some days i feel like simply pulling my hair out by fistfuls!!!

what, you might ask, has this usually calm and centered person so frustrated that such an exclamation is made?

as many of you may know who are regular readers of this blog, i have a young daughter.  she’s lovely, transgender and has autism.  the transgender part of this statement causes me discomfort because of the pain she feels at having what are, for her, the wrong genitalia.  the autistic part of this statement causes much more frustration on my part, as she is unable to tolerate a school environment (altho i don’t think schools are the best places for children anyway) and therefore is homeschooling, with me as teacher.  it is this last part, that is giving me the screaming fits right about now.

many high-functioning autistic persons have difficulty with schedules that are arranged by others, or by situations over which they have no control.  many high-functioning autistic persons are NOT like ‘rain man’ and actually have great difficulty transferring short term memory input into long term memory storage.  thus my daughter, altho very intelligent and absolutely comprehending maths and algebraic formulae must still refer to a multiplication table and counting on fingers to accomplish these lessons…altho reading at about a 9th or 10th grade level, has problems remembering how to spell ‘because’ or any other sight word.

i have plenty of patience for this…it is her absolute refusal to come to the table and actually cooperate with the lesson plans that bothers…er, drives me crazy.  for example, today’s lessons were prefaced by an entire 3/4 of an hour of her trying to convince me to double up tomorrow’s lessons and let her slide today.  and that whole process was prefaced by 15 minutes wherein she accused me about lying when i told her it was Monday, and thus a lesson day.

already she only does about 4 hour’s worth of actual lessons on any given day…did she not include the many fits and tantrums that amount of time would define her entire ‘school day’.  but after adding on the time she spends in bargaining, angry reprisals and resistance, her day is stretched to about 6 hours!

it is almost a given that on lesson days there will be a fight.  she will require me to raise my voice and be sternly resolute about the fact that the work will be done.  it is almost a given these days that i will have to remind her that she either learns from me or is enrolled in public school. that there are laws to which i must adhere to ensure that she gets an education,…my way or theirs. no matter that i have tried to raise her and all my children without threats, when it comes to her cooperation with lessons i am almost always reduced to the “therefores” that sound so menacing…

no video games, no t.v., no ‘this’, no ‘that’…and “i’ll have to enroll you in school”

so today, another monday…another sesssion of futile bargaining…and another morning of raising my voice…

gods! i hate monday!


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nimby syndrome, a brain-eating infection

this morning i woke to this story here’s the letter in full. from twitter.

i’m simply gobsmacked, but not surprised that there are heartless people who don’t mind exposing their own nasty bits. however, unlike the trench-coated pervert who flashes his private parts to an unsuspecting and disgusted bystander, this sort of person doesn’t bother to hid their indiscretions and abominable nature.

perhaps the story mentioned above will turn out to be a giant hoax. that would be some small comfort…but not much. there would still be the whole “who the hell would prank something this awful’ taste in the mouth.

but it isn’t hard for me to believe that there’s one person crazy enough to visit their hate so obviously and openly (altho the letter was anonymous), because there’s whole throngs of people like this raising a stink about transgender kids using the right restroom for them in the school they attend.

high profile, not hiding behind an anonymous letter, making threats, using the court system, slinging their ignorance about like a chimpanzee in a cage does shit, like the lady who sent that letter these folk seem to have more than just the nimby syndrome (not in my back yard). perhaps an extremely virulent form of it that has morphed into a brain-eating infection that renders them incapable of rational, human thought.

some of these “not in my school” variants are pulling their ‘normal’ kids out of the public school systems around the country that have the audacity to treat transgender kids with kindness, consideration and respect. but it doesn’t stop there. no way! they feel they must try to repeal legislation that allows protections under the law to those whom they would oppress, persecute and ostracise.

like the author of this letter, they are convinced of their own righteousness, of their right to feel such awful things about another human being, of their superior standing in normal society and their justifiable lack of a heart.

people like my beautiful 10 year old transgender daughter, who is also autistic have a long row to hoe already…not because of who they are, but because of how full society still is of all these less evolved souls, and outright demon-possessed, frothing at the mouth idiots.

honestly! it’s the fucking 21st century!


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learning twice

i heard a saying once that goes something like “to teach something is to learn it twice”.
that is most certainly true in my experience.

altho i’m not a certified teacher, i have homeschooled three daughters, one of whom is ziona. i have volunteered for Project Literacy U.S, tutored in college while i was pursuing my own education, helped adults seeking their G.E.D and participated in some of my older daughter’s classrooms as the poetry parent, for lack of a better title.

it is exciting for me to learn how another person learns! and it just so happens that it is a good way to be effective as a teacher. much like neuro-linguistics, finding out how someone learns makes it easier to know how to present materials to them. so it is that one truly learns twice that which they would teach. even the most reticent of students can have their curiosity piqued in something if it is presented to them by making it understandable from their own bent of mind, or areas of interest.

but some, like ziona, have naturally questioning minds. the things she asks, born of her own curiosity upon being introduced to a concept remind me of my own childhood school experience, wherein i drove many a nun to the brink of anger with my inquiries

“if god made everything, what did he make it out of?”
“what was there before god made everything?”
“who made god?”

anyone who has a scientific mindset who has been schooled in a catholic or other religious school well knows that such questions are not answered, and one is immediately made aware that asking the questions is totally inappropriate,…even sinful maybe!

ziona asks very interesting questions.

when we were first studying cells, she wanted to know where and how that very first cell happened. when we were delving into astronomy she was curious about what there was before the big bang, and from what or where did all that energy which later was to become stars, planets and moons, the stuff that was spewed and exploded by this big bang to the point of creating space,time and all the dimensions, originate.

so i faithfully dig into my own knowledge, and search out other good sources online, sometimes documentaries on youtube, learning what i already know all over again, so that i can satisfy that thirst in her for answers. she has a much easier time of posing questions than had i in my elementary school experience, needless to say.

a couple of days ago, after her bath, she had another really interesting question, one it may not be possible for me or anyone else for that matter, to answer.

she asked if it were possible that “since i got the boy parts even tho i am a girl, maybe another transgender kid got the girl parts i should have gotten, even tho they are a boy”

at first, being hopelessly cis-gendered, i didn’t get what she meant. then it hit me! we had been talking about the fact of the conservation of matter, a lesson that began her thinking about the whole big bang thing since it means that all the matter and energy present today have always been around, only changing forms, never just blinking out or into existance. she likened this to the notion that if there are x number of boys who should’ve gotten female bodies, perhaps there are also x number of girls that should’ve gotten male bodies. like her real body was out there somewhere, as much a problem for the would be boy that was stuck in it as is the boy body she is stuck with for the time being.

i couldn’t answer the question of course. i told her that for a completely balanced ‘mix up’ like that to be true one would expect to find just as many trans-males as trans-females…and to my knowledge the numbers don’t bear this out. upon hearing this she immediately offered,

“well maybe some of the people who are transgender don’t know it yet. you know, like some of your friends who didn’t know it until they were grown-ups.”

so now i will be absolutely bothered until i do a lot of online research, to see just what the ratio is of transgender females to transgender males. not learning something twice this time, but learning something new! not an uncommon thing for me since the day i started raising this very special child.

because of ziona, i have learned about autism, about balanced trans-location of genetic material from one chromosome to another, about seizures, about juvenile polyposis syndrome, and about transgender children, just to name a few of the things i have become aware of because of her. all these things in addition to the many things she’s taught me about love, patience, compassion, and even such as video games and dinosaurs.

i love being her teacher/student!


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not yet insane

today while loading some of my older poems onto one of my webpages i came across one entitled “day one”.

it was funny looking back on what i thought would become of my attempt at homeschooling ziona. and to be completely honest, i’m not sure that from time to time i haven’t been *this close* to checking into the local funny-farm. quite probably it isn’t a stretch to profess that i have at least figuratively, found myself banging my head against a wall.

autism has many ways of presenting to the world. just as neuro-typical persons have each their own way of interacting with situations in their everyday life, so too the neuro-diverse, like those with autism, have their own very unique way of approaching things. but many children with autism share the same tendency to tantrum that ziona exhibits.

if it only happened when she is called upon to cooperate with her homeschool lessons such fits of anger would be only an enhanced version of the dislike and frustration most any child feels at being made to learn such previously unnecessary skills as ‘cursive handwriting’ or comparative fractions and decimals. if it only happened when she can’t remember how to spell the words on her weekly list of words to remember how to spell, it would be quite understandable.

but from as far back as my slowly aging memory extends with regard to zee, she has had much difficulty in the area of patience. when younger she used to ‘stim’ by spinning wheels on toy cars lain on their backs to this end, or staring into the ceiling fan, watching water pour from the bathroom sink’s spiggot or even waving her fingers in front of her eyes while staring, as if , right through them. these are some of the ways in which some kids with autism cope with the inability to self-calm from which many suffer,

these days ziona doesn’t use such means to offset her frustrations. instead she rages. and by that i mean RAGES! it is this aspect of teaching her that gives us the majority of our problems. and just so everyone reading this who hasn’t had the dubious pleasure of witnessing a true ‘rage!’, can put this into perspective, let me describe a usual progression.

first she screams. then she pounds her fists, or the pencil held in her fist, into the table. then she becomes verbally abusive to me, even threatening to do me bodily harm. then she lays down and flails her arms and legs about while screaming, then she accuses me of thinking she’s dumb, or some such thing, then when she is made to go to her room,(if she goes without a struggle) to calm down, she rages from in there for a bit longer. then she starts hating on herself, she cries uncontrollably, starts calling herself dumb and other such things…she cries more, is overcome with remorse for how she’s behaved and says she deserves to be hurt, then she attempts self-harm.

at that point i force open the door, which usually she has slammed behind her and attempted to barricade, take her into my arms, hug and kiss her tears away. i tell her that she deserves only love. she cries and asks me how can i forgive her. i tell her that she always has my forgiveness and suggest that she learn to forgive herself. we walk back to the lesson area arm in arm to start again.

this same sort of outburst used to happen far more frequently and for little or no reason at all. she has improved greatly. having learned to use words to communicate has helped her to verbalise her emotions, but it has also given her a new way to lash out, to tantrum. and altho such occurrances as the one described above happen at least once a day, either in response to lessons or some other thing that frustrates her, it seems like heaven around here, compared to how it was when as a younger child i could expect at least 9 or 10 of such blind rages per day.

one day, after lessons…after lessons had taken up the whole of the day, right up to her bedtime, we had an enlightening discussion.

i asked her what does she gain from raging like that. her answer was wise and nearly blew me away! she told me that just like swearing when you stub your toe makes it seem less painful, her tantrums actually are a way for her to achieve calm, to alleviate her psychic pain. it was then i began to understand. this is her new version of ‘stimming’.

whether this is really a better way to self-calm than going into the bathroom and running the tap for minutes at a time while staring at the cascade of water, or gazing into the ceiling fan, or shaking her hand in front of her face to watch her fingers make trails of themselves in her visual field, i can’t say. but her being able to explain the ‘why’ of her tantrums…in such a succinct and simple manner, has done much to alleviate my worries about whether such behaviour will last forever. i’m convinced it will not.

just as she left off some of the ‘stims’ of her babyhood in lieu of the ‘tantrums’ she employs today, i know one day she will find more appropriate ‘stim’ to meet the reality of whatsoever her environment and circumstance.

as for me, i haven’t gone insane just yet. and since our little ‘talk’, and my subsequent understanding of her process, my patience levels have increased.


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only 1% !

this article is an example of sound reporting on a difficult and widely misunderstood subject. i have read and shared many articles that likewise attempt to reveal the intricacies of supporting and treating transgender children. some of the other articles i’ve shared have been loathe to mention the drawbacks and concern, and are great because of the positive tone they set. but there are concerns, and people who want to understand our transgender children need to have a balanced view. they have questions, and questions need to be addressed.

nothing that is true need shun the light of scrutiny. studies and research have been done that effectively exhonerate the supportive parents and medical professionals as are part of the solution to a problem, that isn’t really a problem. this article points out some highlights of research that suggest the differences in actual physical brain structures and workings which align the transgender child more closely to their preferred or affirmed gender than the one allocuted and assigned at birth on the basis of genitalia.

it also addresses the issues of the consequences of a transgender child not being supported or allowed to be who they know themselves to be: self harming, self-mutilation,depression and suicide are among the common results of ignoring this need. in contrast, children once allowed to express their true selves, in a context of loving support and proscribed protocols of appropriate treatment, are far more likely to manifest and far fewer of these symptoms.

for ziona, the difference was like night and day. she is still a moody child, she tantrums and cannot self-calm. but these are mostly associated with the fact of her autism. the moment she was allowed to live outloud as the girl she knows herself to be, even these symptoms diminished by almost 90%! she got happier, quit trying to ‘off’ the ‘spare part’ and smiled alot more often. nor did she feel compelled to ‘out’ herself as a “boy-girl” to folk she just met, something she used to feel was necessary for honesty sake…since referring to her with male pronouns ran contrary to the truth she knew to be.

allaying fears that somehow the parents are ‘to blame’ for their children being transgender seems silly but no parent of such a child that i have come across feels the least bit intimidated by counselors and other psychiatric professionals being part of the treatment. if anything, we are relieved to help the psyche of our little ones heal from any loss of self-esteem they might suffer because of being different. this said, most surely with more research it will be determined that transgender folk are not mentally ill, a fact already known by most. but then, who can’t benefit from a little counseling when going through something as all encompassing as is the transgender person’s reality.

recently in the news, there were a couple of articles that seemed intent on casting aspersions on the practice of listening and seeing to the needs of transgender children. one even went so far as to accuse a doctor of wrongdoing in the case of providing care for a transgender person who eventually decided to ‘go back’ to their assigned gender. the article in question seemed intent on presenting that this is common. it is not. nor can we understand what extenuating circumstances in a person’s life might make the decision to ‘revert’ a comfortable one. are they ostracised by family, friends, and others in their environs? is the pain of subsequent rejection or the hardship of just ‘being different’ in a society that condemns one for it a factor?

that’s why i was especially glad to read in the article i’m sharing today, that only around 1% of transgender people who receive treatment decide later to ‘change back’.

read and pass along this article which tends to be even keeled and logical…especially share it with those whose eyes could use a little opening.