Flour Moth
Image

The current bane of our existence

Look at this little thing.

Imagine it to be about one and a half centimetres long.

Looks harmless enough, right?

It isn’t.

A family of those has been in one of our kitchen cabinets for … months.

When we first noticed the flour moths, we had no idea what they were or where they came from, and we didn’t pay them much mind – we had more important things on our hands, or so we thought. Those little brown things on the ceiling were a bit weird, but well.

Then I brought over a friend, and we cooked together, and we got some pre-cut almonds out of the cabinet to roast … and were greeted with little white worms I had never seen before. I jumped, literally jumped – I had just poured living things into my hot pan, a living thing that had been living in my food!
The friend knew exactly what it was – „flour worm“, she said expertly. „You probably have more of those in there“

A desperate search began to find all infested products. Finally we decided to just throw everything away that had been open and were advised to clean out the cabinet – and everywhere else that might be infected – with vinegar water, which Ian finally did because I kept gagging whenever I saw one of the worms. (Did I mention he is awesome?) I guess it was the fact they were near my food that made me nauseous – usually, I like insects (out of my apartment, that is, and even those inside are usually brought out alive if possible) and have been known to sit on the sidewalk to watch a caterpillar crawl.

We thought that would be it.

Oh, how wrong we were.

Apparently, those little worms have strong teeth – they also found their way into closed packages of noodles and flour, and soon we had another outbreak on our hands.

And we just couldn’t deal anymore.
We threw away anything infected and a few more things just to be sure. And then we said „We’ll do the cleaning part soon.“
Cue Executive Function Fail: It didn’t happen. We regularly checked everything for moths and worms, but totally forgot to do the necessary clean-up work.

Then we saw them again – by now, seeing one of those would trigger a meltdown in at least one of us, sometimes both.

„We’ll deal with it“, we say as we try to comfort each other in our helplessness, because compared to all the other stuff we have going on, it should be easy – and then we don’t, because between all the other stuff going on, it’s so easy to shut the cabinet door and forget what might still be lurking inside.

This happened about four, maybe five times.

I did some more research, trying to find out what we were doing wrong. The recommendation was to clean the infested parts of the kitchen out once a week with vinegar, and heating the nooks and crannies that were hard to get to with a blowdryer because that would kill off the eggs. For six weeks. The mere idea had Ian’s voice shaking. More on our plate?

„We could call an exterminator“, we say, and then we say „Come on, this should be doable, and an exterminator is very expensive.“
And we swear to do it ourselves.
That was three weeks ago.

Guess what hasn’t happened.
Guess what turned up in our cabinet a few minutes ago.
Guess who just slammed the cabinet door shut and got out of the kitchen, pronto.

This is one of the moments where it really, really sucks that both of us are prone to EF-fails, lack of spoons and meltdowns.

Now I’ll go find us an exterminator.

I hope Ian is up for calling there, because if I have to say the word „flour moths“ aloud, I might break down.

But what the hell do we do if he’s not?

Limits

„You shouldn’t limit yourself“ – a nice life motto. On paper. For idealists. In reality, you should know your limits, but can always try to exceed them – which would come closer to my life motto if I had such a thing.

But if you are applying for a handicapped pass in Germany, you have to take a hard look at yourself and your natural limitations in everyday life.

And it was a horrible feeling to do so.
It was a horrible feeling to write out a page full of reasons I should be considered helpless by their definition when I usually spend my time finding workarounds and coordinating help if needed. It was triggering. It wore me out. It was disheartening, making me feel like I should just resign to my fate. Not bother trying anymore, because how can I when confronted with the sheer amount of things I can’t do that is required in our society to be considered a functioning adult?

And it was horrible to go nonverbal trying to make my point to the doctor. I had to take quite the amount of ableism from him.

But none of that compared to the feeling of getting back a letter of rejection – that, if read carefully, makes clear whoever wrote it didn’t even read the doctor’s report carefully.
I will have to sue.
I will have to get myself a lawyer and go to court to prove I am helpless … which, if I am helpless, I should not be capable of doing.
Oh sweet irony!

Betrayed and Scared

As I hinted at in the Shattered-Post, some more things went down between my now ex-GP and me, and I am going to tell it all chronologically.
Trigger warning: child abuse and neglect by parents and medical professionals

I got my approval for a handicapped pass approximately a month after she sent in the information. (I made Ian open it because I was too nervous.)
Yey! – But not everything that I felt I needed was on it was on it yet.

On a handicapped pass here, you will find a number – a “degree” of how handicapped you are, basically – and a few letters that specify in which ways – an “H” for helpless, a “BL” for blind, and so on and so on, which specifies things like being allowed to use the handicapped parking space, or taking along someone to concerts free of charge, and so on.

I got the degree I was hoping for, which was awesome, because I had not been expecting that.

Another Aspie who also had hip replacements on both sides actually had to go home with 20 even after going to court about it, so I was elated.

But the letter I wanted – H – I didn’t get. It is hard to get, I knew that, which is why I had had a long evening appointment with my GP to give her all the information she needs to write an eval for exactly that.

She had previously stated she would only need my copy of the diagnosis from the clinic for a short amount of time and didn’t need her own copy, because she would only quote from it anyway, because it was not up to the standards of our area of the country.
I had offered to copy it for her, my cost.
She declined.
This is going to be important later, remember it.

So, arming ourselves with the information we had on how to get this specific letter on a handicapped pass we went to the office responsible and I requested access to my files.

We wanted to check what information needed to be added.

My request was granted.
I looked in the file at a small desk in an office, right next to two office workers.
I found the letter from her. Three paragraphs. 10 spelling mistakes – including her. own. name. Approximately a third of the information plain wrong, the rest mostly unnecessary, barely any of the things we had named as reasons for the letter.
After an appointment of one and a half hours, where I had to listen to her justify herself.
And behind that, in the file? The original of my diagnosis from the clinic.
MY ORIGINAL. The one she didn’t want a copy of.
I had to copy it from there to have my own copy again.

Anger doesn’t begin to describe my reaction. Wrath, I was shaking with it – and so was Ian.

We decided we would both change doctors instantly. This was the last straw.

For the next appointment, the first one with my possible new GP, I had to look through all my old records to make sure he has everything he needs – how is a doctor supposed to write up an eval about someone they are meeting for the first time? Well, giving him all the old stuff and hoping for the best.

I had never done so because I knew I would get angry about professionals missing stuff. I had skimmed them for certain keywords, to see if there were early signs of autism, before, but I had never read them carefully in their entirety.

Nauseous doesn’t begin to describe how I felt.

There were hints at professionals thinking my mother was unfit to raise me from the time I was four.
This was sent to the woman who told me I should just forgive and forget that my mother threatened me with a knife when I was seven and whiny because I was tired …. should I really be surprised she didn’t do a THING about it?
I had always thought she didn’t have a good idea of what was actually going down in our home.
But she must have. Between my mother’s total inability to shut her mouth when she should and those letters she must have at least had a hunch.
She just plain out ignored it. Enabling my mother to abuse me further and further.
There are hints in those documents at me being neglected as a baby already.
What if she missed more?
This doctor told me I just didn’t want to go to school when I was 16 and coming to her with weird symptoms. It turned out I had a meningitis and an optical neuritis. I still have nerve damage from that. (Another thing she says she just doesn’t feel bad about. Bitch.)
But I had always assumed this was a recent development, that she had overworked herself and didn’t know when she was no longer capable of doing her job … but those documents hint at a different story entirely.
She might have been this incompetent from my early years on … and given how much stuff there actually was FOUND to be wrong, is it so far-fetched to fear she missed other crucial things?
I have to rethink my entire medical history. And that scares the hell out of me.

What kind of stereotyping is THIS?

A bit of backstory here:
When I was at university for a month-long math course (I am not enrolled in university, I just sent the lecturer a nice e-mail asking to be allowed to attend lectures and exercises.) in September, I used this as a kind of social petri dish.
Given how slim the probabilty was that I would ever meet one of them again if I did not want to, I decided to be more openly autistic and disclosing when I felt it appropriate.

That could be in response to the r-word (though in German, the insult of that meaning is closer to “handicapped” than “retarded”, the German word for retarded is too much of a mouthful – thought I’d mention it, otherwise my answers won’t make sense)
“So what, so am I!”
“What, you’re comparing me to that? I’m insulted!”
Stuff like this.
Or it could be to explain while I was socially exhausted, or just to say “hey, not gonna do eye contact today, nothing to do with you, just too much input right now”

I allowed myself to rock and otherwise stim.
And overall, this was a positive experience, I might write more about it soonish.
Of course there were stereotypes floating around, but most people were willing to listen when I corrected them.

There was one incident I just can’t get out of my head.

I disclosed to a girl as having Asperger’s this time, not using “autistic”, I had kind of alternated depending on whatever felt right in the moment.
I don’t even know how exactly it came up.
But her response floored me.

“Really? That’s sooo coool! I mean, autism is shitty, but Asperger’s! Do you have any special talents? Show me, please!”

What kind of stereotyping is that? And am I a circus monkey?
Anyone have any experience with that?

It’s between you and the mirror, not you and me

Disclaimer: I wrote most of this post a few weeks ago and just found it in the drafts, only one little update referring to what I said in the Shattered-Post. Some things I said about my doctor partly turned out to be false – and sadly not in a good way. I will write on that soon.

This post is not nice.

And it may not be fair.

But I need to get this off my chest before I go insane.

Gods, people of my direct environment, would you please stop making my diagnosis about your own damn self-validation?

I had a long appointment with my GP not too long ago, going over things for my application for a handicapped pass. Which all went reasonably well.

The thing is that she completely absolved herself of any fault at all of any problem I had due to not being diagnosed/being misdiagnosed/however you want to call it.
I don’t want an apology. I never asked for any comment on that. I mainly pointed out how my mother was (not) dealing with it, because those two have known each other for longer than I am alive and she asked how it was going.

Then she started to tell me how she did not feel bad at all. And that there was no way to see it. And all the other children (All boys, as I could find out with subtle questioning) she has „accompanied on their journey“ over the years just were so different, „the signs just weren’t there“, which is bullshit if I l can skim the paperwork I still have from my early years, she just plain out wasn’t experienced enough, which no one could fault her for – but she did not admit that, she just said the „signs weren’t there“.

Okay. If that’s how she looks into the mirror at the end of the day, that is her conscience.

She can feel that way.
But I am not her therapist. I am not her friend. I am her patient. So why is she telling me this?

(And, on a side note – Dearest GP, no, you will not successfully blackmail me into a „Thank you, dear [doctor’s first name]“ – or at least not one that isn’t dripping with sarcasm – when you don’t even think about apologizing or giving a reason for sending off the papers over a week later than your „at the latest“. If we treated our clients like that, they’d fire our sorry asses)

My mother is even more difficult to deal with, because I see her much more often.

„But I tried everything, but I went everywhere, oh woe is me!“ Which is a perfectly fine thing to feel, it sucks to know you did your best and it still was not enough, no matter if I think you did your best or not. (As I think she’s a narcissist, I really don’t)

But talk to your therapist. Talk to my older sister, who was stand-in-second-(and sometimes only) parent over the years and might feel the same way. Talk to your close friends. (No, not everybody you haven’t seen in a few years but now made contact with, close friends you would confide in for your own things as well.)

If you had asked Ian nicely, he probably would have listened to you about it as well, because he is way too nice of a person.
But don’t come to me. Don’t make me comfort you about my diagnosis. Don’t tell me how one of the happiest events of my life made you go out to scream. Don’t come to me for validation. Not when the next day you will be back at your most unsupportive.

Shattered

We are so horribly sorry for not writing in the last few months.

But so much happened in such a short amount of time.

I got my first confirmation on her handicapped pass, am however applying for changes– and found out in the process I was medically neglected by my GP for the last 16 years at least.

Ian is up for his autism evaluation and frankly, shitting his pants about it while he is trying to keep me together.

So, we apologize.

We’ll be back soon, posts are in the works.

Meanwhile – keep your fingers crossed for me tomorrow and for Ian on the 21st for his eval, yeah?

It took them that long?

Let me first set a Trigger warning for this post – for ableist and downright abusive medical professionals, parental abuse and neglect, disclosure against will of autistic person.

My mother has been so nice [Sarcasm!] to take the question to whom I wish to disclose out of my hands.

She mostly keeps telling parents of former friends of mine (without my permission) and then passes their reaction on to me.

Some people I disclose to on my own, because I want to.

Most of the reactions were at least somewhat supportive.

One thing that is angering me more than it should was „It took them that long to figure it out?“ referring to the various developmental specialists and other professionals I have seen over the years.

While it is usually just rage at how I was misdiagnosed over and over again and therefore maybe rightly placed, the insinuation that they figured it out angers me. They didn’t. They gave up on me. They didn’t follow up. They treated me irresponsibly in many ways that were only indirectly related to my diagnosis itself (as in: If the same professionals had diagnosed me correctly, they would have probably pulled the same shit)
They allowed my mother to up the dosage of my meds at her leisure.

After once setting me up with the second type of medication, they never ever checked again if it was still the right dosage afterwards. (Luckily for everyone after me, checking at least once a year by watching the child for a few weeks instead of hours is mandatory now.)

They even outright endangered my life – Or would you send a child home from a psychiatric hospital „because her mother refuses to cooperate“ only days after said mother breaks down in your office threatening to take both her own life and the childs?

I can still only name one psychiatrist I actually deem worthy of the title, and I have seen many.

They have no right to be credited for the diagnosis I have finally gotten.

I did this. I did the research. I contacted the doctor. I set up the appointment. I took the trip. I am still learning how to advocate for myself, and this, for me, is one of the first steps.

They didn’t figure it out – I did. And this time I made damn sure I was going to be listened to.

Fidgety Philippa

Do you know „Shockheaded Peter“, also called „Struwwelpeter?“

It is a set of stories written by a german author about children who misbehave and the (highly unrealistic) consequences for their actions.

I had my own copy of the book. I found it … grueling, but I liked that it rhymed.

Three boys, for example, tease a dark-skinned boy and are subsequently dipped into black ink so they are even darker now. A boy who sucks his thumb – and then gets his thumbs cut off. A boy who dies of hunger because he refuses to eat his soup. The boy who always stares into the air instead of watching where he’s walking who subsequently falls into a river.

Then there’s Fidgety Philip.

You can find the whole version here.

Fidgety Philip – or „Zappelphilipp“ in German – has since become a euphemism for a boy for ADHD.

I was misdiagnosed with ADHD at age 7 – I am one of many autistic girls who have been.

But there was still the cliche around that boys mostly get ADHD and girls ADD.

Like Zappelphillipp was the euphemism for the boy with ADHD, Träumerlieschen (Dreamer Lizzie would be the best translation I can come up with on the spot) was the one for girls.

So my mother constructed a girl-version – „Zappelphilippine“ (which I translated here to „Fidgety Philippa“) – that she would call me whenever I was too fidgety for her. Sometimes she still does.
I thought, therefore, I was all wrong – not only did I have ADHD and with that a neanderthal’s brain (I know now that is not the case, but my mother told me it was like that and I was a child, therefore I believed it), but also the „wrong kind“ for my gender.

I hated being Zappelphilippine. I hated how my mother said it teasingly. I felt reduced to a label – though I did not have the words for that at the time. I also was insulted that I was compared to a boy who pulled everything of the dinner table, because I was much more coordinated than that.

I would mostly fidget in my chair. I still usually sit in a chair with one leg drawn unter my body, I always explain it away with having always been the smallest at the table when someone asks about it, but I am starting to think it may have been the result of being frequently chastised for tapping my foot or moving my leg.

I’d chew on a strand of my hair, until a carer at an after-school-care claimed I would one day swallow a hair and choke to death. I always knew that was rubbish, but I wanted her off my back, so I stopped that, too.

Over the years, I kept reshaping my stims until they had taken a form that was somewhat more socially acceptable, but I paid a high price – frequent Public Meltdowns up until fifth grade that gave the bullies more ammunition – because they learned to trigger them on purpose for their amusement.

I was rarely physically stopped from moving – at least not that I remember much. I did not have too much trouble allowing myself to learn to stim openly again when I needed too. I was – relatively – lucky.

But whenever my mother will call me Zappelphilippine for stimming, or I am reminded of other ways I have been inhibited in the past – the triggers are many – it brings up the old feelings of shame for not being able to sit still, to be somehow less than the other children.
And I wish that didn’t mean I’m lucky, for all those people who are much more haunted than I am.

A short story

Hey there,
we’ll be back soon. In the meantime, here’s a short story I wrote a while ago. If it counts as that with barely over 250 words. I may expand it at some point.

 

„Come on, you can’t be serious. Again?“
Molly sighed. She had had this conversation about a million times.
„It really can’t be that bad. You can’t let that illness of yours rule your life!“
She sighed again. Her doctors had told her that this was what would happen, as gentle as they could, and she had not wanted to believe them. Illnesses like hers were just not socially acceptable. She popped her pills as every morning, trying to ignore the looks from her roommate who was still certain that those pills were absolutely unnecessary. That she was an addict. She was not.

For a moment she considered going back to bed. It would help the medication kick in. But she had a lunchdate with her mother, and if she’d cancel, she would once more have to listen to a lecture about how she should treat her health.

As if they knew. They had no idea what this was like!
She looked in the mirror and once more wished she had instead been given an ailment that was „okay“ to have. Something that would not make employers look at her weird when she said she needed reduced work hours. That would „satisfy“ her friends and family when she couldn’t muster the strength to go out.
„It’s just transport!“, her teacher’s voice echoed in her head when she had asked for a break because the pain didn’t let her use her limbs like she wanted to.
„It’s not like you’re depressed, or anxious, or anything to be taken seriously. It’s only your body!

Short update

Ian is getting out of the hospital tomorrow, but will be on crutches for a while. The weird changes on the site are due to my own idiocy – I made an update without checking what exactly would be updated and somehow the CSS got totally messed up. We should be back to normal soon.