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!

Monday, 12 September 2016

A warmth you could toast marshmallows on

Last month I went on holiday.  For the last few years, the Hub and I have been taking separate holidays, usually overseas, as a means of decompressing, just being our own person for a while, and recharging the batteries to the level needed to cope with the cyclone that is our family.

In January, the Hub went to Japan to snowboard for the first time in nearly two decades.  I'm not much of a winter person, and with my ever-worsening arthritis, I prefer to hightail it outta here towards a northern hemisphere summer.  And that's what I did, to America for most of August.

I'd been away for two previous Augusts, and because the Trans-perger's birthday is on the 29th of that month, she had informed me - and I will point out I was always back in time for her birthday - she didn't want me taking anymore August holidays.  So why did I?  Well, I'm not totally without heart, but in the two years since I last dared leave the family home during "birthday month" (that's a thing here, just go with it), she had really gone off the whole acknowledging the birthday idea.  At the ripe age of 13, she'd decided that she didn't like the fact she was getting older.  Combined with that, she wasn't even really fond of the idea she was born at all, so why would she want a day to celebrate that?

And yes, it is somewhat disheartening as a mother to find your child resents you giving birth to them, but I'm pretty sure I'm not the only one feeling that sting.  It hurts slightly less than the actual act of giving birth to her.  Something I'm still suffering the repercussions of many years later.  There's a reason her younger sister was an elective caesarean, but that's another story for another time.

When I was booking my holiday, it appeared that August was going to accommodate many of the things I had on my to do list than my original planned July.  So it was with trepidation I went and asked the Trans-perger for permission to holiday during birthday month.  Hang on, who's the parent here?  Oh that's right, it must be me, because parents constantly carry guilt around.  Much to my relief, permission was granted, and the great USA vacation was given the green light.

As the leave date drew closer, I suffered all sorts of guilt.  I felt like people would judge me for leaving my kids for so long.  I felt like people would judge me for not caring enough about my first born's birthday.  I felt guilt that I was leaving my husband with such a handful.  I cried nearly daily for a week leading up to my leave date for all the guilt I carried.  It eventually dawned on me that the only person judging me was me.  Although at this point I will concede that when I do leave everyone tells me what an amazing husband I have for staying and looking after the kids, yet when he goes on holiday, I receive no such praise.  What's that about?

The morning I left was a school day, and we offered both kids a day off school if they wanted to come see me off at the airport.  The Little Miss was all star jumps and flappy hands about that, but to the surprise of absolutely no one, the Trans-perger declined.  She even tried to sneak out of the house that morning to avoid saying goodbye to me.  Nice try.  I was expecting that so I headed her off in the hallway and forced a goodbye hug upon her.  First I told her "Sometimes Mumma needs these things and you have to learn to accept that."  Her version of accepting that is to act like I was covered in acid.  I'd describe it as like hugging a lamppost, only lampposts don't actively pull away from you.  After a millisecond of such a warm gesture, she declared "Ok, that's enough" and went off to school not even looking back for a wave.  Oh, I felt so missed already!

Before I left, the Trans-perger had decided what she wanted for her birthday.  A new virtual plane. Maybe two.  And more specifically, these two particular models that I seriously don't remember the names of, but she does and that's the main thing.  We assured her that we will buy them on her birthday.  Guaranteed her she would have them.

I rang home, often using Skype video, several times during my holiday.  Each time the Little Miss would be beside her Da and flapping and dribbling all over the screen excitedly.  Each time I'd have to get the Hub to take the phone - without facing the lens in the Trans-perger's direction - to the bedroom door so I could tell her "Hello.  I love you.  I miss you." to the same response each time - "Yeah, ok."  When that lovefest was done, I'd ask the Hub "Has she missed me at all?" and the response is always the same.  I'm only mentioned in the context of will I be home in time to buy her her birthday plane(s).

The other big event going on very close to her birthday was an special event with Julie Andrews.  Out of the blue, Julie Andrews had become the single most important person in her world, for no reason in particular.  Aspie interests are always like a switch going of inside her head (and it's something I totally relate to).  It was an amazing coincidence because shortly after she was gripped by Julie Andrews fever, it was announced the great Dame was coming to Australia to produce a stage run of Mary Poppins, and amazingly, a one off show dubbed "A Conversation With Julie Andrews" (basically an overpriced Q&A at the Sydney Opera House) the day before her birthday.  You know what else was happening the day before her birthday?  I came home from my holiday.

Unsurprising the Trans-perger was absent from my welcoming committee at the airport on the morning of my arrival.  I can deal with this mostly because the Little Miss gives me enough love (and saliva) for both of them.  Her face is a joy to a weary traveller.  Ok, the Hub was too.

The plan was to leave for Julie Andrews at 10.30am, and by 8.30am we were on the road home, which is a mere 15 minute drive from the airport.  Apparently that was cutting it a bit fine in the Trans-perger's mind, and warranted a phone call to find out when we'd be home.

It was lovely to hear her voice again, knowing I'd be seeing her again soon.  But do you think she even acknowledged my presence?  I answered her, saying we'll be home soon, and nuthin'.  Nada.  Zilch.  No "Hello Mumma", or "Welcome home".  Just "ok." and hung up the phone.  Oh, I can just feel how much I've been missed by her!  Nevermind that is was actually me, up at the crack of dawn, sweating over the keyboard, trying to grab a seat in the front rows for her.  My nerves were not helped by the fact that half the tickets were sold before the allotted on sale time.  I was relieved to get her row 2, a little to the side.  Far better than the nose bleeds though.

When we pulled the car up into the driveway, the Little Miss blessed me with a "Welcome home, Mumma", and was rewarded with yet another hug.  We got upstairs and I poked my head into the Trans-perger's room and smiled.  And waited.  And waited some more...

"What??"

"Just waiting for a 'Hello, Mumma, welcome home.'"

*unintelligible grumble*

I ventured closer.

"Noooooo!!"

I kissed her on the cheek and said I missed her (because, truly, who wouldn't miss this level of affection?).

The response was a flinch, another grumble, followed by an "Ok, that's enough!"  You'd swear my lips were covered in cow dung.

I always find it amusing when I tell people that the Trans-perger does not miss me.  That she'd probably not even care if I never returned.  "No!" people scoff.  That's unheard of!  What child would not miss their Mumma?  An Asperger child, that's who.  When I tell people she doesn't miss me, I'm not saying it to earn sympathy, or gain head pats.  I am just letting people have a glimpse of my world.  A world where it is possible that a child doesn't have this wonderful, warm, fuzzy bond and unconditional love for their Mumma.  Even now I know there'll be people reading this thinking "Oh, but she'd love you deep down but just doesn't show it!"  I caught you, didn't I?  You read this and thought that very thing, didn't you?  Because people think it cheers me up to hear that.  But the truth is, I don't need cheering up.  We have accepted that is our lot in life.  She is incapable of feeling that bond that all mothers crave.

There was a time in my life that I imagined my son would run into my arms.  But not only did my son not ever do that, I don't even have a son anymore.  And becoming a girl has not softened that cold barrier between us.  To get through this life as a parent of an aspie, we must accept that we are here at her convenience.  I was appreciated to the level that I didn't spend all the money on the holiday and we can still afford the plane(s) for her birthday.  I was appreciated in the fact that I landed at a time that didn't effect her plans to see Julie Andrews.  Other than that, you could plant me at any point in the world, even a war ridden, terrorist hot spot, and it wouldn't raise a blip of concern from her.

And I can still hear some people saying "Nooooo!"  Accept it.  We have.  As have probably a lot of Aspie parents, I'm sure.  Don't worry about us.  We don't need to be told they love us.  The important thing is that we love them.

 AFTERWORD:  When the Transperger first found out that Julie Andrews was coming to Australia, she wondered if it was possible to meet her.  We told her it was highly unlikely, but she was keen to talk to Ms Andrews, and we suggested why doesn't she try and write an email to Julie (as she calls her) via her manager and maybe they'll pass it on?

She sent me the email she wanted us to forward to her, and it was the cutest email I've ever read in my life.  Amongst it were mentions of the irony of being someone who didn't like music, but whose favourite movie was called the Sound Of Music, a chronological time line of how she got so into the movie, knowing the name of the mountain at the beginning of the movie (do you?  I didn't!), passing on a hello to all the other cast members, and lastly, which seat she'll be sitting in, should Julie want to acknowledge her presence.  All in all, a terrific insight into her brain that we rarely have the privilege to see.

We never received a reply, so we gathered things got to hectic for them, and it just got lost.  It didn't stop her from being super excited about seeing her live, in person, from second row.  When she and her Da settled into their seats, a man came out and approached them.  "Are you [Transperger]?"  She was stunned so the Hub had to answer for her.  The fellow introduced himself as Julie's manager to them and handed her a rectangle of cardboard.  Within it was sandwiched a glossy colour photo of Dame Julie Andrews with a personalised autograph.  What an absolute thrill for her.  I reminded her of how many millions of Julie Andrews fans there must be out there, and she now has a personally autographed photo of her, to treasure for the rest of her life.
Personalised photo
A treasure
 We so rarely see such genuine joy and happiness from her, but this moment I will take to my grave.  And what a wonderful gesture from the Dame and her people.  If only they knew what such a simple communication means to someone like my beautiful daughter.  I will hold her up high for the rest of my life.

Sunday, 4 September 2016

John Elder Robison and a very dangerous idea

Today I had the pleasure of meeting the author of the first book I read about Asperger's, John Elder Robison.  Around the time of the Trans-perger's Asperger diagnosis, John Elder released his first of many books, the autobiography "Look Me In The Eye".
In the ensuing 10 years he's released many other books, including "Raising Cubby", a book about raising his son as a parent with autism, and the latest "Switched On", documenting his experience with Transcranial Magnetic Stimulation (TMS).  It was this subject that had brought him to Australia to speak at the Festival of Dangerous Ideas.
For those who aren't into autism as deep, TMS is (amongst other things) an experimental treatment on the brain to awaken the ability to read people's emotions and non verbal cues, which are commonly deficient in people with Asperger's.  I haven't read the book yet, (I purchased it today), but I have read a few article written about what the procedure did achieve, and not all of it is lollipops and rainbows. Along with the enlightenment came the reality that reading emotions better meant that negative emotions were just as visible as positive ones, and for someone half a century into their life, that can be a tad confronting.  Music all of a sudden flooded him with overwhelming emotion, and he had trouble dealing with things like news reports, and stated today that he still can't watch them.  Friendships were tested and his marriage at the time broke down, all combining to lead him into an almost suicidal depression. Thankfully his story has a happy ending, and he credits being able to do things like come to Australia, and speak publicly, to the TMS therapy.  Still, it seems a frightening thing to do, and we are lucky there are people like him who are willing to put their hands up for the greater good of the autism community.
Despite the roller coaster ride the treatment put him through, he remains very much an advocate for TMS, and not just for treatment of social impairment.  He can see a future for treating all sorts of conditions, including epilepsy, in the future.  He does caution that he thinks one should only consider it as an adult, fully in grasp of the facts of what they are going into, and not to just force it upon young kids with Asperger's.  He would recommend far more passive routes to social awakening, like the PEERS Program.  As a mum myself, I find the whole process far too scary a situation to try it on my child. On a more personal note, I was rapt to find out that he would be doing an autograph session after the show, and had brought my tattered copy of "Look Me In The Eye" just in case.  I took the opportunity to buy his latest book, and also, as a Father's Day gift to the Hub, "Raising Cubby" personalised to him.  I was actually quite surprised by how nervous and excited I was to meet him.  I came away shaking.  It seems he's a bit more of a rock star in my mind than I could consciously admit. I wore my "Autism - life turned up to 11" Tshirt (courtesy of Red Headphones for Autism), and as someone who used to work with the likes of Pink Floyd and Kiss, and amongst other duties, creating Ace Frehley's light up and smoking guitars, I have no doubt he got the reference.
If you ever get a chance to see John Elder Robison speak, I highly recommend it.  He is entertaining and passionate about all things autism, and truly captured the Sydney Opera House audience.  If not, he now has four books out, each one insightful, informative and very entertaining.  As I mentioned above, he holds the enviable distinction (I'm sure) of being the first author I read on Asperger's after the Trans-perger's diagnosis, so he was my first stepping stone on our long and interesting journey.  
Ok, now I understand why I was so nervous and excited to meet him.