Sunday, 8 October 2017

Mack L'amour and the Vote For Yes

Last week was Grand Final Weekend here in Australia.  There are two dominant codes of football in here - Aussie Rules (AFL) and Rugby League (NRL).  My team didn't make it into the former's grand final and I have no interest in the latter.  So why on earth have I started this post in an autism/transgender blog with a seemingly irrelevant event?  Well, something in the NRL grand final celebrations threatened to overshadow any victory or loss of the actual contests.  Macklemore had been booked for their entertainment, and was going to perform his hit marriage equality anthem Same Love.
This could have been a minor event for anyone outside NRL or Macklemore fandom (where I generally reside) but for the fact we are in the middle of a faux plebiscite and heated public debate over legalising "same sex marriage".  I actually prefer the term marriage equality as it includes everyone, not just those falling within the gender binary, but that's a whole other blog post I need to find time to write.  The spotlight was thrown on this one performance of this one song when our former Prime Minister, Tony Abbott, who has basically been throwing a public toddler tantrum since he was ousted from the top spot by our present PM, told the world the NRL should not be politicising the Grand Final by having Macklemore perform his heathen same sex spell on we innocent members of the public.
Ok Tony.  Lets just look at this for a minute...
First of all, no one was politicising the Grand Final until you stuck your snivelling face in front of yet another microphone and drew attention to it.  You politicised that moment.  YOU.
If your aim was to shame the NRL, Macklemore, and anyone who was already planning to witness the performance into disgust, all you did was draw even more attention and a bigger audience to it.  I mean really, how many people tuned into the half time entertainment just based on the spotlight Abbottoir threw on it?  Moths, meet flame.
And what a performance it was.  What would have been just been an adequate half time performance from an international rap star was turned into a mardi gras festival of equality in love, complete with rainbow flags, multicoloured fireworks and an audience filled with people of all demographics holding up their hands in love heart formations.  Well done, Tony, you whiny little mosquito.  You really sprayed a hose full of fuel on that fire, didn't you?
                                                                                              Credit: Brett Costello
Macklemore?  More like Mack L'amour!  Amirite?

But most of all, I must call into question the idea that the NRL hiring Macklemore was "politicising" the Grand Final.  Because the real question to me is, why are politicians politicising a human rights issue?  Marriage is a right that should be available to all adult human beings.  Just as voting is.  Just as we rid ourselves of discrimination against women, races, etc, we need to rid ourselves once and for all of this discrimination against homosexuality, and with that, non-straight couples seeking to celebrate their love through marriage.
Australians registered on the electoral role have all been sent a form with one simple question and a yes or no box to tick.  I won't go into the pros and cons of the method, or the amount of money we tax payers are forking out for the whole process.  I just want to concentrate on that single question.
Unfortunately, Channel 9 chose to air a No Campaign ad directly after the Macklemore performance.  Whether that was some sort of personal "fuck you" from the station we will never know, but what needs to be mentioned is that I've yet to see a No Campaign ad that actually addresses the one simple question on the form that's been sent out.  And this more than anything has pissed me off.  More than one of the ads directly targets my own flesh and blood.  These ads use scare tactics such as insinuating that a Yes vote will result in radical sex education being introduced into primary schools, and *gasp* people encouraging our children to transition genders.
Cue Helen Lovejoy

Gee, thanks No Campaign.  Not only for bringing up a completely unrelated subject, and scaring families into thinking sex ed can make your child transgender, but for also making my child a target, as something evil that needs to be stopped.  We haven't already had enough of that through the "vaccines cause autism" scare, where it seems parents would rather have a dead child than an autistic one, like my two.  (Fun fact: vaccines don't cause autism.)  Safe schools has been hard enough already to implement, and now they are also getting targeted by the scare campaigns in the name of No.
I have to wonder why the No Campaign have resorted to scaring people on subjects that are unrelated to voting yes or no on same sex marriage?  Could it be that they can't come up with a valid argument as to why we should vote no on that one question alone? hmm.
Along with the Yes and No campaigns, featuring regularly in news reports of late have been various polling services, all trying to predict what the outcome may be.  A bit difficult when the subject itself is also just a poll (a non-binding, non-compulsory questionnaire, run by the ABS).  Still, I cant help but look at them, trying to glean some hope that common sense will prevail.  What results I have found have been predictable.  Inner cities are pro-Yes, while rural leans more towards No. 
But the one that eats at me most is, the older the generation, the closer to No the votes lean.  Meaning the people who have the least amount of years left to live will be preventing future generations from marrying who they wish.  Sounds harsh?  Maybe.  But it's the truth.  There are people right now who might be dead in 5, 10, 15 years, when the Transperger will be just entering marrying age, that probably don't and won't ever know her, and may not even be alive at that milestone, who are ticking no on that box, and robbing her of a right they themselves have probably enjoyed for decades.  There are people who have not even been born yet that will have that right taken from them before their gender has been even formed in the womb, by people who will be in their coffins.
And for what?  Judging by the No Campaign's public statements so far, even they don't know.  So they deflect to unrelated, irrelevant scare tactics and make innocent children, of which my daughter is one, both targets and victims of discrimination.
If I had a chance to talk to someone who was contemplating voting no, I would simply ask "Why?"  Why do you want to hurt, not just gay people now who wish to marry, but many, many generations to come.  Why do you want to rob people like my daughter of that public celebration and declaration of love?  Why do you think this affects you in some way?  What difference to your life does it make for two people who are in love get married?  Does it make you feel better to crush the dreams not only for a gay couple, but for the people that love them - Parents, sons, daughters, close friends?  Why do you want to have such a negative influence on a group of innocent people in a situation that has zero impact on your day to day existence?  And one that will impact millions of people even beyond your existence?
You may put this passionate statement down as one fuelled by a personal connection.  A mother protecting her child and trying to make sure she has the same rights as straight couples enjoy.  But I can assure you, I was signing marriage equality petitions before I was ever a mother.  Because this is a human rights issue.  This is a discrimination issue.  I should not have the right to prevent the marriage of two people I don't know.  And frankly, it's none of my damn business if someone wants to marry someone that they love, who is of the same gender.  Don't make it yours.

                                                                                                  Credit: ABC News
The only acceptable No vote

Monday, 1 May 2017

Every month is April

It is May first.  This means you can all stop being aware of autism, because autism awareness month is over.  Yes I am joking, you all very much need to still be aware of autism, because we autism families sure don't get a break when April is finished.  Every month is autism awareness month.  Every month is April.
Each April I have tried to post one positive autism story a day on my facebook page, not necessarily always a personal one, just as long as it's positive.  This year I failed miserable.  And it's not because I didn't have any positive stories to share, I very much did, but because I would simply forget to put them up.  They would happen, and I'd think "Oh I have to post this one for autism awareness month!" and by the time I got the time to do it, I'd have forgotten.
Not that I didn't post anything.  I did manage to splutter out a few throughout April, just not enough to count on two hands.  (Maybe there are, I don't really know, as I'm too ashamed to actually look and count them up!)  Repetitiveness also proved to be a problem, because as some of you would know, repetitiveness is a common trait in autism, and while the kids might do something cute and worth sharing, they might do that same thing for a solid 30 days, and I'm pretty sure the world would get sick of me going on and on about how my youngest can instantly tell you a car brand just from a cursory glance at the logo.  Also what make it is and what country it was from.  This one didn't make the cut because it happened when I had to buy a new car this weekend (the family truckster has officially died!) and it was pretty much a trip to Disneyland for her.  But I've been so busy getting rego and insurance and eTags sorted out, that I haven't even logged into facebook since it happened.  But here it is now for you all to envy!  Positive autism story - The Little Miss KNOWS CARS.
What is the point I'm trying to make here?  I'm sure there's one if I look hard enough.
It's that I don't want all this autism awareness to focus on the negatives of living with autism.  And it is Oh. So. Easy. to fall into that rut.  I think we as a species have a tendency to focus on the negative.  I remember back when I worked in a salon I was told by my boss "If someone has a good experience here, we'll be lucky if they tell one person.  If someone has a bad experience, we'll be lucky if they don't tell a hundred."  That applies to almost everything.  Think about the amount of times you've complained about something vs the amount of times you've gone out a showered the world with positivity and optimism.
One place that is filled with joy and optimism is Sesame Street, and unless you've been living under a rock you will know that they recently introduced a new character with autism, a 4 year old girl named Julia.
I absolutely had to choose the most Juliest photo of Julia.  We autism parents know that far-off-distant look from our own children.

The show has been praised by many for this introduction, but in some autism circles it's also been criticised for not showing Julia in a state many of us have experienced - a full blown meltdown.  While they've shown Julia getting upset at loud noise and retreating to a special place to calm down, the don't have her react in what most parents would think typical of a child with autism.  The kicking, spitting, biting, screaming meltdown that often comes when they feel discomfort.
But I feel like that is missing the point of Julia.  Yes she is here to represent all the children who have autism, but that is hard to do when you are dealing with a spectrum disorder.  I always joke if you want to see how far and wide the autism spectrum is, come meet my two!  They are about as opposite as two people can get on the spectrum.  Both present hugely different issues.
Julia has been presented with some of the more typical traits, such as sensitivity to noise, arm flapping, lacking verbal skills, not socialising in a neurotypical way.  But the outbursts so many of us autism families deal with is not there.  Because Julia isn't just there to show us how children with autism behave, she's there to teach everyone else around her that autism kids exist, and we need to know how to accept them and welcome them into our world.  Not just awareness, but inclusion.
There's been some significant leaps in how people with autism have been portrayed in the media since Rain Man hit the screens.  For many years, that was most people's only reference to go on.  While we all think our kids are extremely special, I've yet to meet someone that can roll of complex equations like Raymond Babbitt.  Not that they don't exist, but savants are very rare.  (There is a lot in Rain Man that can be related to.  I'm pretty sure at some point I have screamed "Underwear is UNDERWEAR no matter where you buy it!!")
So in comparison, Julia is a more relevant example of what most people deal with, and it is understandable that the last thing Sesame Street would want to do is portray her as someone who kids might be afraid of and try to avoid, by having her throw a full on fit because Big Bird touched her painting or Alan made a noise mixing a milkshake.  Baby steps, people.  We can tackle those issues one at a time.
Who knows, maybe someone will think to call it autism inclusivity month instead of awareness.  Because it's not enough for the world to be aware of people with autism.  It's time we included them into our world.  Julia is the first rung on that ladder.

Wednesday, 8 March 2017

No group for you!

Anyone following me from my first post will probably remember that I started this blog because I couldn't find any support on the interwebz for people dealing with children with both autism and transgender.  Sadly 10 months later, nothing much has changed in that department, which is puzzling, because in that time I have discovered that the percentage of people on the autism spectrum amongst transgender people is markedly high.  There doesn't seem to be a scientific explanation on why this is so, but the numbers are hard to argue with. So the next puzzling question is - where is the parent support for this group?
I'm not saying there is no support, because I am part of a couple of groups, but they are not easy to find.  So I wanted to write today about that path, and how rocky it sometimes is, and how sometimes you still have to dig your own way out.
There are several issues to overcome in finding support. The biggest one is secrecy. While the world is changing and becoming more accepting of trans people, there is still an awful lot of hate out there, and the majority of that hate can be found on the internet. It's so much easier to act tough from behind the anonymity of a screen. Taboo subjects can only become accepted if and when brave people can come forward and speak up for the minority. As a mother, I am more than willing to do that, but I don't get the final say in how open I can be. That privilege rightfully belongs to my daughter. I am only here as support, so I have to protect her and not make her a target.
She also wants to be "stealth", so in our community, anyone who didn't know her before coming out doesn't know her history.  But she's not the only one who needs support. I also need support, and when we first stated seeking help for her to transition, I was given information on groups for parents and help lines to call. There was a common theme to all the support offered - We are here to help you understand and hopefully accept your child in this confusing time. We understand your reluctance, and hopefully we can help turn your resistance around.  Great!  Except we're past that. I don't need help understanding my child.
I don't need an explanation as to why this is happening. I'm not confused about the situation. I just need to talk to others in the same situation.  But there isn't really any "support" out there for accepting parents.  It's all geared towards folks who want to stop their children from transitioning.   People who are in tears, wondering where they went wrong.  I trawled through the internet, Googling many variants of the sentence "Support for parents of trans kids" and found myself going in circles.  Walled in, frustrating circles. I searched through Facebook and found it hard finding support for parents of kids with autism who are also transgender.  I've written before about how much the High Priestess' Aspergers interferes with her transition, and also the support generally offered to trans parents.   I'd signed up to a trans parent Facebook page that was based in America. It was great for me to know I wasn't alone and there are so many kids of my daughters' generation that are transitioning now.  But in the end, I found few parents on there were dealing with the double whammy of autism with it.
I found myself envying other parents who got to celebrate publicly the child's transition. But even more so, most of the participants in practical discussions on there were from America, and the advice they gave did not apply to Australian circumstances.  In the meantime I continued my search on Facebook and came across an autism trans page.  Eureka!
I sent a request to join and was immediately accepted. I read up on all the posts there and got such a keen insight into what these people were experiencing, and how I could help my own child.  The next day I felt a need to thank them for their posts and say how much it meant to me as a parent to read what they are going through.  My post was immediately leaped upon. "Who is this person?  Are you someone with autism and is transgender?"  Some of the responses were harsh.  "Who keeps letting these people in??"  I had no idea that parents who are not also trans and autistic were not allowed to join.  Whoever accepted my request didn't vet me and nowhere did I find notice that non trans people were not allowed.  "These people" were most definitely not welcome!
I understood immediately and noped out of there as fast as I could, but the experience was completely demoralising.  Just when I thought I'd found a safe place to vent my feelings, I was chased out of there like I was the enemy. "No group for you!"

I get it. They need a safe place where they can talk freely. The admin of the page sent me a direct message explaining what happened, but when she ended it with "There's plenty of other groups out there for parents." my frustration was complete.  Really?  Plenty??  I feel like I'm screaming at a brick wall here!
(At least one other person from that group had looked me up and discovered this blog. While out at Hub's work Christmas dinner, I received an email notification saying someone had commented on my latest blog post. The message was dressing me down for what I'd written and the background image of my blog. It was a doozy. I sat on it for a couple of days wondering whether I should delete it, or post it with a response. I chose the latter, feeling like it represented what we trans parents face every day. You can read it here if you wish.)
In the meantime someone from Australia in the trans parent Facebook group noticed I was a fellow Aussie and sent me a direct message to steer me towards an Aussie group.   This Facebook community was deep underground.  Like the opening title sequence of Get Smart (don't get your nose caught in a closing door!)  I was so relieved to find somewhere I could access relevant information for my daughter and her journey.  The medical side of being transgender is like a labyrinth inside a maze.   Every state has different laws (but at least we have so few states. Having 50 like America would be a minefield!) but there is usually someone in the group that can answer a question, or has been down a certain road before you and can offer their experience.  And just the support is invaluable.
I posted a question asking if there were any other parents out there whose trans kids were also on the autism spectrum, and soon discovered that there was a Facebook group out there for such parents. Alleluia!  Naturally, as I'd finally found what I'd been searching for for months, I sent a request immediately. I read peoples posts and could relate immediately.  I'd found my people!  At last!  You can probably tell already where this is going - down hill.  To hell in a hand basket.  What I'm about to say here is probably going to put me in a terrible light but as I said at the beginning of this post, I won't shy away from things that I feel need to be said.
A post went up on the Autism/transgender parent group, from a non-binary parent, asking that people stop talking about our kids previous life in terms such as "born a boy" or born a girl", and to use the prefered terms AMAB or AFAB ("Assigned male/female at birth") as it can trigger dysphoria in trans people in the group.   I get that.  We are all learning the terminology and must now be careful as parents to respect our child's, and other trans people's, true gender.   I was giving her a little bit of side-eye when she ended her request "if you absolutely *must* do this for some reason I can't fathom..." because, well...this is a support group for parents to talk about their family's journey.  But point taken, I can certainly be more careful.
Then someone asked if there were dysphoria triggering implications in using the term "Lived as female/male in early childhood"? The reply from the original poster was absolutely, yes it does, and "there is no need to reference a trans child's assigned sex." WUT?  Now we are history revisionists? There's no two ways about this. My eldest daughter lived as a boy for the first 12 and a half years of her life.  That's just a fact.  Yet somehow, in a support group for parents of trans kids, I'm supposed to pretend that shit didn't happen?   It's the whole freaking reason we need support!  Because that is REAL, people!  That's exactly why the last two and a half years have been a shit show.  Because the preceding 12 and a half years established in every way possible that she lived as a male, and now we are trying to undo all that mess.  And it ain't easy.  And when you throw autism in with it, I need to bloody talk about that!
Most people who know me will find this hard to believe, but I don't like confrontation one bit, and I try and avoid it as much as possible. But sometimes it is unavoidable, and now I was defending my right to seek support from other like parents was being taken away, because we all had to tip toe around an absolute fact that was the whole foundation as to what we are seeking support for.
After going through so much in the last two years, if I've only learned one thing, it is that mothers of trans kids are at the very bottom of the list of who the world gives a shit about.  We do SO MUCH to support our kids, to help them in every step of their transition, to be in their corner for every fight. And in the end, when it comes to support, we are last in line.
I knew when I posted my response, my days in that group were numbered.   But I was going to make a stand before I exited.  Sometimes being on the other side of the world to the majority of Earth's inhabitants means you might write something on the internet, then go to bed.   It's a bit like dropping a truth bomb and coming back 8 hours late to find all the damage of the explosion.   I'm at least pleased I was not the only person to see the pointlessness in being part of a support group when you can't talk about the major issues of why you need said support.  I vowed not to comment again, but before I unfollowed I needed to see that I wasn't the only person who felt this way.
But what to do? This was clearly an untenable situation, and it had taken months to even find a group for families dealing with kids on the double spectrum.  What were the chances of finding another one?  And if I did, what are the chances of running into the same issues?  What did I do last time I couldn't find support on the internet?  Ah, that's right, I started a blog.
As much as I just wanted to walk into another group on Facebook and settle in, I knew once again that if I am to get the support I really need, I had to create an environment in which to grow it.   Build it and they will come.   I'd taken note of the mums that saw my side of the problem and contacted them.  Would they be willing to join a group if I made one?  A group in which we can be frank and honest and uncensored?  It was pleasing to find them willing, and so I started a group.  And this time I set the agenda.  A welcome post, stating that we will be talking about our whole journey, not a curated tale to please the masses.
It's new and it's small, but it's there now for when I need it. And I hope when other parents and carers of this niche group of trans kids on the autism spectrum are searching for a place that will welcome their stories, they will find us with open arms.

 ps. If you want to join, drop me a message or comment below. I also have Facebook and Instagram accounts for this blog with links on the right -->

Sunday, 22 January 2017

New year, new name

It's the 22nd of January.  So it's taken me 22 days to finally sit down and acknowledge the new year on the blog.  Granted, it is school holidays and even in the best of circumstances it's damn hard to sit down, take a breath, and straighten my thoughts out enough to punch out a few words, without getting interrupted with "I'M HUNGRY!" or "SHE'S ANNOYING ME!"  That last one can come from either or both at any given time.  
 Apart from a few moments of bliss where they played Sims together.  Then the High Priestess deemed the Little Miss was ready for a Sims of her own, and downloaded and set it up for her.  Sounded great at the time, before I realised I was not going to get another chance to get onto my PC for the rest of the school holidays.
Not me getting things done on my PC
  Lack of routine is another impediment.  Not just for the kids, but for myself too.  If there's one thing this house needs its routine.  The value of routine for kids with autism can not be overestimated.  While I'm sure most parents must want to soak in every last drop of freedom that school holidays brings, I pray for time to fly and have school days set our clocks back to a semi strict time table again. Things will get DONE.
 Honestly I feel like I have a hundred posts in my head and I do take notes when something particularly strong tries to work itself out to a keyboard, but I felt like I had to get a new year post out before, to set the table so to speak.  And for people who have visited this blog before, an explanation of the name change is in order.
 So the artist formally know as the Trans-perger had a bit of an online snoop and discovered the blog.  Frankly I thought I, and more specifically the blog, were doomed.  But as unpredictable as ever, she was not as against it as I thought she would be.  In fact she was quite measured and understanding.  I explained to her that I don't reveal names, etc, and I have a feeling she expected that, and that was why she didn't object too strongly.
 But she had one stipulation.  And that was the name.  She didn't want her trans status up in lights.  It's something she doesn't want to present to the world ahead of everything else.  To us now she is our daughter.  Anyone we (or she) meets who didn't already know her when she lived as a male are not privy to that information.  So she didn't feel comfortable about the title of the blog.  She was fine with the Asperger reference, but as far as a title was concerned, that half didn't work well without the other, so it was back to the drawing board.
 One thing I've often said about our crazy life behind closed that we have a very abnormal normal.  It is usually in response to someone trying to comfort me with phrases like "Oh, but what is normal?"  Not bloody this, I can tell you!  "Normal is just a setting on a washing machine!"  Well apart from the fact that I've looked and my washing machine doesn't have a setting called "Normal", there are a lot of other things that are considered normal, and not many of them reside within these four walls. 
Other favourites are "You'd never realise they had autism!", "All kids are like that!" and the perennial favourite, "We shouldn't label kids!"  I'm so jealous of normal families with normal genders and normal kids.
 Still no one really seems to feel comfortable with you labelling anything, especially your own family as not normal, so what else could I do but completely buck that trend and name my blog in the honour of the not so normal normal.  I did stop short of using the word abnormal, but if we are to be called normal, it is a different normal than the normal normal.  Are we clear?
 Happy belated different normal new year!  8 days to go...  

Wednesday, 30 November 2016

None shall pass!

Today is the last day of November, now known in this family as Transgender Awareness Month.  Of course it's a real thing and of course it's not the first one, so I wonder why it took having a transgender child in my family before I was actually aware of it?  I've spent the last 30 days thinking I need to make a blog post during this Awareness Month, putting some pressure on myself that I need something worthy enough to post on such an auspicious occasion.  Then a Facebook conversation today brought the obvious subject to light.  Something known in the trans world as "passing".  For those not up with trans terminology, passing means appearing as the gender you are living as, when it's not the gender you were assigned at birth.  Thus, if you were born male-typical, the aim is to be seen as female by the general public, rather than as a boy dressed as a girl.  And even at the young age our daughter is, it's something that bothers her.  The irony is she has been mistaken for a girl her entire life, long before she chose to transition.  Still it's a huge concern for her, and many other trans people out there.  (At this point I'm going to concede that I've not done any deep research in to this, but it appears on the surface to be a problem for trans girls/women more than trans boys/men.  Much like how eating disorders in cis gendered people seems to more prevalent in females than males.  Not to say it's unheard of, it's just less common.  But I'm no scientist so I'll move on...)  I may have mentioned before that our girl came out to us around the same time that Caitlyn Jenner came out to the world.  Now, no matter what you think about Jenner and her clan of attention whores, having that happen right then was so important.  It was someone she could immediately point to and say "That's me."  Lesser known, but still high profile was Laverne Cox, starring in Orange is the New Black, an open trans character being played by an open trans actress.  Something else these two famous ladies have in common is that they are conventionally "attractive" (not my opinion, but they are conforming to media standards of how women are supposed to look).  So are there any role models out there for women who don't have access to Hollywood make up artists, plastic surgeons, and red carpet designer fashion?  Funny you should ask, because I have one stashed away in my record collection!  Her name is Laura Jane Grace, and while she may not ring the same bells in your memory as Ms Jenner, she has none the less undergone a very public male to female transition, and done so in what might seem a very unforgiving environment: the punk music scene.  Her band, Against Me! (their exclamation, not mine, I'm not trying to yell at you) brought out several recordings with lead singer Tom Gabel before, at the age of 31, she couldn't stand living the lie any longer and became Laura.  I've been to an Against Me! gig, and this band attracts a hard core crowd.  I can't imagine how that must have felt to walk out on stage dressed as Laura.  I hope right now you're not imagining her dressed in something by Dolce and Gabbana or Versace.  The wardrobe transition went from basically black tshirt and jeans from Tom's wardrobe to black tank dress and jeans from Laura's.  She applied heavy, harsh black eye make up to what had once been the make up free face of Tom.  Tom's short haircut was grown out to Laura's messy shoulder length mane.  Does Laura pass?  To what standards is she expected to pass in?  I think she looks awesome, but she won't be making any best dressed women's lists that make their appearance around this time of year.
 To paraphrase Sesame Street, one of these ladies is not like the other.

 It was so good to have someone atypical to show our daughter that you don't have to conform to a Hollywood standard that even for a cis woman is an impossible ideal.  And you can trust me on that.  Spending way too many decades worrying about a non-existent weight problem has left me with the bones of an 80 year old.  No one is immune to unhealthy standard, no matter what letter they checked on your birth certificate.  We are still a long way off accepting people, trans or otherwise, appearing in any other mode than something resembling Barbie or Ken (pre-Barbie with curves, that is).  It seems frustratingly obvious to me that it should not be put upon the trans person to "pass" as a legit member of the gender they choose to live as.  The onus is on ALL OF US to accept people as they choose to appear.  Whether it's ultra feminine, butch, punk, emo, an individual look that defies any pigeon hole, Caitlyn Jenner, Laverne Cox, Chaz Bono, Laura Jane Grace, or YOU.  And while we're on the subject of pigeon holes, I had one emailed to me this morning in the form of a promo from an online shop I enjoy browsing through.  'Tis the season to spend money, so all the Christmas pressie suggestions are flooding in.  "For your work mates", "For the kids", "For the kids teachers", you get the drift.  This mornings was "For the girls!"  Now I don't want to come off as a social justice warrior or anything, but it immediately rubbed me the wrong way.  I have pretty thick skin, and generally prefer to shy away from confrontations no matter how mild, but I felt like this was a time to speak up.  This was a time to let them know that they were perpetuating the kind of stereotype that made transgender or gender non-conforming people shrink away from being their true selves.  They are perpetuating the pink/blue myth.  They are supporting people who will feel freedom in ridiculing anyone who tries to walk a different path.  And the last couple of years has made something I might have thought nothing of before, stand out like a beacon.  This, I thought, is why we need Transgender Awareness Month.  Because the vast majority of people go about their lives completely unaware of the pressure trans and gender non-conforming people feel every day they step outside their door.  So I politely sent the store an email (they shall remain unnamed, due to the grace they showed in their reply) just reminding them that we need to get past such stereotypes and make everyone feel comfortable in what they chose to buy from their homewears store, and show off in their house to friends and family, without feeling like they've done something wrong and may get laughed at.  The woman in charge of the mailouts saw my point 100%, and vowed that they would certainly be more mindful of such targeted marketing in the future.  She felt like she was sending something to empower women with the choices open to them, not realising that she was taking away that power from anyone outside that box who might also like the products shown.  That's all we can really ask for: awareness and acceptance, for all of us.  Happy Transgender Awareness Month!  

Monday, 10 October 2016

Pride (in the name of love)

She did it.  A few minutes ago the Trans-perger walked out of our door for the first day on term 4 wearing the girls uniform shirt.  I am absolutely bursting with pride, but absolutely not allowed to show it.
(And yes, I've once again used a song for my title, but seriously?  Can you think of a more appropriate one?)
At the end of last term, some three weeks or so ago, she had said to me she wants to wear the girls shirt for term 4, and asked me how she should go about that.  I said she has two weeks in front of her, it might be wise to use that time to practice wearing it.  Because in this house, wearing clothes takes practice, right?  So normal.
But she didn't.  Even on a weekend when it was just her and I, I suggested it would be a perfect time, because she knows I won't "react" (ie. show pride in any manner whatsoever, up to and including "making the face"), but "No, I'm not ready."
Last week she came up with the idea that maybe she should put it on underneath her normal shirt so she could get the feel of it, but then she spent a week at her grandparents' house, and it wasn't something she felt comfortable doing outside of home.  Not that she'd shown she was comfortable doing it here either!
At some point yesterday afternoon, the Hub came to me and whispered "She's wearing the school shirt".  I think I looked at him like this :O and he told me she'd been wearing it all day.  And also that she was worried about my reaction.  (If you're wondering how I went most of the day without seeing her, she's a teenager, she has a room, you work it out.)  It was good that I'd been warned in advance, because if I'd "made the face" I'd have destroyed the whole deal.  I then made a point of "accidentally" going into her room with the express purpose of showing her I won't be proud, or any of that silly Mumma stuff she hates me doing.  Then I did it a few more times just so she knew I didn't miss it the first time.  Nothing was said.  I passed the test.
I still did wonder if she'd get to this morning and just get too scared to make the move.  This is a HUGE step, let's not trivialise this moment.  This was her very first public outing wearing a dedicated female item of clothing.  It doesn't matter that everyone at school knows she's transitioning, this is a massive milestone.
She did come to me and say "I'm scared".  I reminded her that everyone at school knows, this won't come as a shock to them.  Deep down she knows that, but HOLY SHIT it's still massive.  She looked at the Little Miss and said "Do I look like her?"  Anyone who has met my kids will know they could almost pass as identical twins.  I told her that on the weekend, before I trimmed her little sister's fringe, she had her hair brushed to the side, and for a brief moment all I could see was the Trans-perger.  I saw a wave of relief wash over her face.  She said "Good, I don't look like a man then."  She then talked about me buying her more shirts for school, and I could see she was ready to make this a permanent thing.
But still, I worried she'd get cold feet at the last moment and change just before she left for school.  I could see her wandering around the house clutching her unisex school jacket, on a day set to be 32 degrees.  I reminded her not to lose it (as she'd already lost one, and those things ain't cheap!) and I told her gently "I know why your have it.  You're not going to need it."  And I was not meaning the weather.

And then she walked out our door, dressed as a girl.

As soon as that door closed, I felt an overwhelming need to cry.  I guess unbeknown to me, the emotion I'd been containing for the last day and a half wanted to spring to the surface.  Well, probably more like the last two years that has built up to this point.  I really think this will be the moment that gives her the most confidence.  She has broken that barrier now.  She has stepped off the edge.  And if all goes well at school today, which I'm sure it will because it's a pretty progressive school, this may be the springboard for her to dress more like a girl in all areas of her life.

Sunday, 9 October 2016

Baby, baby, it's my turn to cry

As the Cold Chisel quote that I've pinched for the title of this post suggests, this is going to be all about me.  Not really trans or aspie related, but as I've said before, if something is affecting one member of the family, it affects the whole family.  Or more accurately, if Mumma ain't happy, nobody's happy!
This saga began five years ago.  Or so I thought.  As it turns out, it's been going on for longer, but more about that later.  Five years ago I started feeling pain in my knuckles, like a bruised kind of feeling.  Then it spread to my wrists, and some mornings I was waking up not being able to bend them.  At first I blamed my ferocious addiction to my iPad, and my lack of care so far as typing on it in an ergonomic manner.  When I started to feel it in my feet, I figured bad typing posture was probably not to blame after all.
It occurred to me that, with a family history of rheumatoid arthritis, these could be signs that I had also fallen victim to this disease.  I finally bit the bullet and visited my GP, who sent me off with some blood test referrals.  While RA can not really be diagnosed by a blood tests, there is something in the plasma that indicates someone is susceptible to it.  And it came as absolutely no surprise that mine did.
With the blood test results and history, my GP had no qualms in sending me off to a rheumatologist for further treatment.  At this point it wasn't exactly debilitating, so I may have entered into it at this stage without the seriousness required for tackling an autoimmune condition head on.  But what ensued is not something I feel comfortable taking total blame for.  Only in hindsight, and the benefit of having a better experience lately, do I see why this went off the rails so early on.
The woman I'd been referred to seemed to be more interested in asking questions I'd expect from a psychologist.  She barely even touched any of the joints I'd been having trouble with, and I certainly wasn't asked to sit on a table for any sort of thorough examination that one might expect.  She then sent me off with some chicken scratchings on a post it note, recommending a couple of natural remedies.  The only one I can remember was a bottle of some sort of cherry juice concentrate, but I sure remember the bill from the health food store!  It was way more than anything I expected from what was largely glorified fruit juice.  She had me book another appointment before I left, because of course she did, it was some nice $$ in her bank account for each visit. 
On the second visit, I informed her that the dirty tasting juice and whatever the hell the rest of the witches brew she recommended had done absolutely nothing to put a dent in my joint pain.  I can't remember everything that was said at these visits, but I do remember the impression of RA that I'd gathered from them.  That is, it's basically impossible to definitely diagnosis, like it's all guesswork; cherry juice is overrated as both a drink and an RA remedy, and costs far too much; and I was now out of options.  Of course the specialist reccomended I make another appointment before I left, so I feigned that I was just so incredibly busy in the next three months, I'd have to get back to her on when I could possibly squeeze an appointment in.  Translation: It would be just as effective if I stood above my toilet and started flushing $50 notes down it until my wallet was empty.
And so my opinion was set in stone - If I did have RA, I was just going to have to suck it up and accept it.  After all, we were only guessing I had it, right?  Who could be sure?  So suck it up I did.  For five years.  And in that five years I found some freedom in our busy lives to travel, by myself, overseas, having adventures just as me.  Not as Mumma, or wife, but me.  I went to Japan and then America.  The Hub and I even squeezed in a trip to Fiji, our first holiday together since our honeymoon (and that was a brief and fairly unspectacular trip to Surfers Paradise).
I always had this problem where I'd walk and walk until my feet were so sore that I couldn't even stand on them anymore.  So as you could imagine, visiting other countries and all their spectacular tourist attractions, I was returning to my hotel rooms practically a cripple.  It was unfortunate that on several occasions on these holidays, I'd even cut short, or plane cut out, certain attractions because I literally could no longer stand on my feet.
Fast forward five years, and I find myself on school camp, playing escort to our Little Miss.  It was May this year, and the beginnings of Winter were being felt.  I'd packed what I thought were sturdy shoes, but the physical activities prepared for the kids, and by default, me, were testing their soles to the fullest.  After the first day, having balanced myself on a rope, I felt like the bottom of my feet were bruised.  They remained that way for the entire camp and I was glad to get home to rest them and get back to normal.  Only it didn't happen.  The bruised feeling stayed no matter how I treated my soles.  Then I started to feel the crippling pain in my hands again.
Clearly I need to be hit over the head with a brick to get the messages my body sent to me.  This was not a gradual build up of pain. This was going from feeling fine and dandy to not being able to do up my daughter's shoe laces.  My foot pain was not caused by the camp activities.  I was just fooled into believing it was through sheer coincidence.  Once I realised there was no outside cause for this pain I was experiencing, I realised there could only be one explanation: arthritis.
But that was fine, now I'd experienced that merry-go-round once, I knew not to make the same mistakes twice.  This time I'll skip the specialists and just try and deal with the pain as best I could with over the counter pain killers.  I thought I'd gain some advice as befitting a patient of the 21st century.  I consulted my Facebook friends list for advice.  But rather than reccomendations of pain relief, I was inundated with calls to get thee to the doctor, you silly woman!!  No amount of "No, I've done that and am done with that" responses were stopping the influx.
But through it all I got a private response from my older sister, who has been through it all before, explaining what is actually possible, a message I should have gotten from the specialist I saw five years ago.  In it was one magic word that really hit home: remission.  That word was like a key that unlocked the safe holding all my hope.  I finally made another appointment with my GP to get a referral to a specialist to someone who wasn't that crazy woman peddling cherry juice.
In the meantime I had some more travelling to do and as usual I was beating my feet to death sightseeing.  I had some painkillers my GP prescribed to me, and an appointment with a new rheumatologist upon my return, but figured, as I was flying into an American Summer, I'd be fine and dandy.  Unfortunately I was on the tail end of the warmer months and it turned out to be not much warmer than the Sydney weather I'd left behind.  In the two years since I'd last travelled, my feet had gotten worse, and I even experienced a massive cankles episode for the first week.  Overcast weather in Cleveland, NYC, and Dallas had caused my hands to swell and freeze up in pain.  I learned very quickly to make sure I had my bags packed for the next leg of the trip the night before, because in the mornings I could barely dress myself from the pain.  Once again, I had to miss attractions I wanted to see, because my body could not carry me any longer.  By the time I got home, I was counting days until my specialist's appointment came around.
In describing the difference between my last rheumatologist and this one, the term "like night and day" springs to mind.  I'd done all the blood tests in the lead up, and he soon had me lie down so he could examine the painful appendages.  As soon as he touched my feet, he said "Ooh yes, I can feel damage there."  I know this is going to sound insane, considering everything I've written above, but I was really surprised.  I told him I thought my hands would have been in worse condition, because that's what brought me to him in the first place.  But most importantly, I immediately felt like something could be done.  I was actually on a path to recovery.  The information from the doc was overwhelming in volume, with test referrals and prescriptions and thorough instructions, but it was all positive.  Most importantly he told me I can be fixed and I almost wanted to cry.  
I headed off to the chemist with a wheelbarrow to pick up all my prescription medication, that included steroids for immediate pain relief, methotrexate (which has become an in joke here.  I'm on the meth!), folic acid, because...I can't remember but I have to take it, and vitamin D, because I'm a vampire.  
All the meds!    
Thankfully, I was to be weaned off the steroids almost immediately, so that massive weekly dose of chemicals would be slightly reduced.  I was even more thankful once i discovered they were the cause of my chronic acne problem.  I had unfairly blamed the "meth", joking that they were my crank bugs, but most of the time, I was far from amused by them.  It might seem vain that I was really upset about breakouts when the cause was ridding me of crippling arthritis pain, but anyone who has dealt with facing the public with a face that resembles a pizza can probably relate.  I wondered if it was even worth trading the meth for something else.  It was a huge relief to know that the medication causing it was the one of was already weaning off.  I'm now finished with them, so I hope my face will clear up soon.
The other major side affect I've had to deal with is tiredness.  I thought I was tired before this.  I was wrong.  This is a whole new level of tiredness.  I'm lucky to get to 1:30 without my brain screaming at me to lie down.  Any readers of this blog can probably guess that that is not a sustainable plan, so I was pleased to hear that may wear off over time.  If it doesn't, that may spell the end of my love affair with meth.
The most eye opening experience since starting the medication regime came when an American friend came to visit and I took her out for an entire day sightseeing.  I was so looking forward to it, and we were going to fit in as much as we possibly could in one day.  I'm very proud of my city, but it ain't small and I knew I was going to end up kicking myself for putting my feet through agony.  At least I would kick myself if my feet weren't so sore.  But halfway through the day, and many attractions in, I realised my feet weren't hurting as I'd expected.  Normally I'd be looking for the nearest seat to sit down on for about 48 hours.  But I wasn't feeling anything.  Then the penny dropped (call me a slow learner), my foot pain wasn't just caused by walking around too much.  That was arthritis!  The more I thought about it, the more it dawned on me.  All the pain walking around on my holidays was preventable.  When the rheumatologist told me my feet were damaged and I was surprised, it all made sense now.  
On my first appointment he told me I needed to become someone who complains more.  Maybe if I'd complained years ago about my sore feet, I'd have been able to see more on my holidays.  Or have more fun taking the kids out, or when visitors came to Sydney and I would take them out for the day.  And maybe, just maybe, if that first rheumatologist had done her job, this would be a very different story.  
I have to be honest, it's been hard not to be bitter about that.  But lately I've been striving to rid negativity in my life, and I can't change the past, so all I can do is focus on what I can do now.  And thankfully, even with years long delays seeking treatment, I haven't sustained any permanent damage to my bones.  Some good news at last!  And this specialist is about the happiest doctor I've ever met in my life.  You can't help but be affected by his positivity.  He told me I'm his favourite kind of patient: Easy to diagnose, and fixable!  Clearly he's a man who loves his job.
I had more tests in front of me, and monthly blood tests are now a permanent fixture in my life.  I had another major setback when my bone density test came back showing I have full blown osteoporosis.  As he told me (in his usual cheery manner) that I have the bones of an 80 year old woman, it came as a shock to both he and I.  He's concerned as to how that could have happened, and is sending me off to an osteoporosis specialist to get to the bottom of it.  I wasn't game to ask what could possibly have caused such a dramatic deterioration, as the diagnosis alone was a huge blow.  When I asked if it's reversible, and how, his answer was brief: drugs.  I think I'm going to need a bigger pill box.
As I sit here typing this now, my face burns from both acne from the steroids and a rash from the meth.  I'm through the first day without steroids, and so far not feeling any arthritis pain.  And I have to get on the phone again tomorrow morning to make an appointment with yet another specialist.  Unsurprisingly, with all my appointments, along with the Trans-perger and Little Miss's various appointments, we've hit the Medicare safety net, which is always a reason to celebrate in this house.  I'm thankful that we live in a country with government funded health care, and when you've had a month like I have, we must be grateful for small mercies.  It doesn't cover everything, but it does mean we don't have to worry about bills at a time when it should be the last consideration.  
I have joked that I'm like a strange case of the Picture Of Dorian Grey.  Where Dorian's appearance stayed youthful, the painting in his attic took on all his sins and aged terribly.  My inner self is like that portrait.  While I've managed to keep my facade (with a lot of help from hair dye and make up!) reasonably similar throughout the years, my inner structure has aged beyond my years.  I hope my fate is better than Dorian's!