Monday, January 25, 2016

Who Wants To Cater My Pity Party?

Okay, so it's not really a party. More of a tiny gathering. We need coffee. Cinnamon rolls would be nice, too.

I've had this brain my entire life so I'm used to it by now. Even when it's giving me a hard time it's not usually too big of a deal because I simply adjust and wait for the abilities I've lost to come back. They have always come back. I can easily count on one hand the number of times in my life when I have been this disabled for this long. In the past I have become depressed and needed hospitalization but I'm getting much better at dealing with these setbacks. Understanding why it happens makes a huge difference.

But once in a while it still bothers me because it wasn't that long ago that I could do the things that I can't do now. Facebook reminds me every day with that cursed 'Memories' feature. Oh, look. I took Evie to Walmart. Wait...and made cookies? Then took the kids out for dinner? In one day?

Today I needed to package something up for a friend and take it to the Post Office. I joked about it on Twitter and Facebook but the amount of struggle involved in completing such a simple task made me so furious with myself. Address the envelope. Put the shirt in the envelope. Tape it shut. How hard is that? Apparently so fucking hard that it took me a week to be able to do it.
And I can't even explain why it's so difficult. I know what I need to do and I know how to do it but it's like a paralysis. I just can't.

The trip to the Post Office was even harder. We live in a small town. It's a small building. One clerk available and I've never seen more than 3 other people in there at one time. It should not be the monumental task that it feels like it is. It makes me feel stupid. Pathetic, useless and stupid.

But the issue isn't really about the package or the Post Office today. I know the reason that it's bothering me so much is that little voice in my brain that keeps repeating, 

"If these simple tasks are so much of a struggle then how are you going to manage a con in Atlanta?"


I won't wallow long. I prefer to stay 'shiny'. I appreciate the many blessings in my life and the good things my brain has to offer but I suspect this feeling will crop up many more times between now and October.

Oh, and don't forget the chocolate. We need some of that to go with the coffee and cinnamon rolls. Just don't make it Lindt. They support Autism $peaks.

 
 

Sunday, January 10, 2016

On Accidentally Creating Inspiration Porn

In my previous blog post, And Then Suddenly I Was Autistic, I spoke about what it was like for me growing up undiagnosed. I have received some wonderful feedback but my intention in writing that was not to amass a pile of wowyouresoamazings. Mine is not an unusual story. There are so many other people out there with similar experiences even though the details aren't the same.

The CDC comes out with their figures ("1 in 68 children!" *gasp*) and folks start throwing around words like 'epidemic' or 'crisis' when the reality is that we've been here all along.

So many stories like mine.

It's not vaccines or older mothers or genetically modified foods. We've always been here. Granted, if I had lived 100 years ago I probably would have remained locked away and unable to go on to pop out miniature versions of myself, so there are likely a few more of us but it's not because our mothers had Gestational Diabetes or whatever the hell they think the cause is this week.

But, yeah, I really wasn't shooting for the inspiration porn vibe that was apparently radiating from the previous post. I don't want anyone's sympathy or to inspire anyone. I merely wanted to educate and illustrate the reality of growing up without a proper diagnosis.

I choose not to define myself by any of my bad experiences. I don't wear my struggles as some Badge of Honor. Shit happened and, yes, it helped shape me but I have not been that child for many, many years. I'm not even comfortable with the word 'Survivor' anymore. The way I see it, with the weight we have assigned to that word now, it's still giving too much power to the past. Everyone suffers at some point in their lives so if they're still breathing, they are 'surviving'. All that being said, I certainly don't begrudge anyone else the labels they choose to assign to themselves. I just prefer not to use that particular one myself.

I'll stick with Autistic, Wife, Mother, Friend, and the occasional ridiculous online moniker but I'll happily pass on Survivor or Inspiration.


Wednesday, January 6, 2016

And Then Suddenly I Was Autistic...

Trigger warning: Institutionalization, abuse, suicide, general yuckiness.

When I was little no one knew I was autistic. I was just a hyperlexic, sleep disordered, sickly, difficult child. In addition to meltdowns I had shut downs so I was eventually taken to a neurologist to rule out absence seizures. While they said my brainwaves were unusual, it was not epilepsy. It was written off as 'stress' but they didn't suspect autism. I was subjected to many invasive medical tests during my childhood to try and determine what was 'wrong' with me but aside from some food intolerance, nothing showed up.
 

I hated life as far back as I could remember. I always had such a strong sense of not wanting to be here, like I knew on some level that life wasn't supposed to be so hard or overwhelming. At the age of four I drank an entire bottle of perfume after my sister told me it was poison but it wasn't until I was nine that I made a conscious decision to try to kill myself.

I was put into therapy and tested. I recall them being frustrated with me for my 'non answers' but some of the questions simply made no sense to me so I refused to even try. How the hell should I know what the woman in the picture was thinking? I could have fun with that one now but back then it seemed pointless.They still didn't know I was autistic and as I continued to get worse I was eventually institutionalized. I officially became The Crazy One of the family.

I spent two birthdays in the 'Bad Place' but they didn't figure out I was autistic there, either. Looking back at it all, I believe that some of my fellow patients were also misdiagnosed autistics. Unfortunately their 'treatments' were pretty much the opposite of what autistic kids would need. Living in close quarters with 29 other kids would be hard for anyone but being locked out of my room so I couldn't escape from the constant chaos was their approach to 'making me deal' with it. Meltdowns would follow. I was written off as 'resistant to treatment' and told I would spend the rest of my life in places like that. After 16 months the insurance stopped paying because I was getting worse instead of better. I was kicked out and sent to a residential program in Pennsylvania.

They didn't know I was autistic, either, but they accommodated my needs anyway. They also didn't believe I was 'crazy' and for the first time I stopped being quite so miserable. Mostly. In defense of the professionals, I was also an abused child so many of my 'behaviors' could be excused as the effects of that. PTSD could take the blame for the disordered sleep, hypervigilance, and other things. I was there for a couple years and then returned home to Vermont.

I was still The Crazy One of the family. Shortly after coming home my mother killed herself, my father moved on and moved out, and I was left as a teen to flounder. I spent the next 20 years in and out of marriages, long term relationships, and many failed attempts at holding jobs. I just could not do life like 'normal' people no matter how hard I tried. I could 'pass' for a while and then I would go through a burnout period where I could barely function. I used what energy I had to try and hide the worst of it from my children. After several years of this cycle I was determined 'disabled' but the reasons given were depression and anxiety. Well, yes, I have severe anxiety but since that time have come to realize that the depressive episodes were triggered by my loss of ability to function and not the other way around. Losing the ability to do things sucks and there's an adjustment period that follows. Feeling depressed during that time is an understandable reaction but not the cause.

So how did I magically become Autistic? Like so many autistic adults it was when my youngest child was diagnosed. Again, I assumed so many of my little 'quirks' were from being abused. Lousy eye contact? Must be my low self esteem. Don't like to be touched? Must be that pesky old sexual abuse. Pointed, amused looks from my husband during Evie's evaluation? Yeah, okay, I get it. She and I do a LOT of the same stuff. Even the toe walking. And smelling everything.

It wasn't until I read the differences between the way autism presents in males and females that it was really driven home for me, though. It explained so much about everything I've struggled with over my lifetime. I've now had three years to process all of this and I'm still learning new things about myself and how my brain works all the time. This knowledge has been a blessing. I still struggle daily but now I understand why and know what I need for accommodations to make life more bearable.

I no longer don't want to be here. Here isn't so bad after all.

Thursday, March 19, 2015

It's That Time of Year Again...

We're rapidly approaching the month of April which means you'll be seeing people post 'autism awareness' images and 'lighting it up blue'.
You will also see the Autistic community and their allies bitching about it.
See, 'awareness' sucks. 'Awareness' is prevalence rates and tragedyspeak and 'we need to find a cure' crap. It's a money grab by Autism $peaks and the scarier they can make the 'awareness', the more cash will flow into their coffers. And Twizzler Challenges? No.



*Image description: Super cute little girl with blond hair, pink sunglasses and a pink tee shirt that reads 'Autism Speaks does NOT speak for me'.



We're all about 'Autism Acceptance' up in heyah. Acceptance is understanding that it's not all doom and gloom. That, yes, some times are really rough but many are beautiful and full of joy and that's what we should focus on. It's learning to embrace difference instead of merely tolerating or even trying to eradicate it. It's understanding that maybe that 'spoiled brat' screaming in the checkout line is really an autistic child who is experiencing sensory overload and giving them a kind smile instead of the stinkeye. It's understanding that children don't magically outgrow autism and that you have probably known autistic adults in your life and never realized it.

So, what is autism? Autism is a little girl who sang so much her parents didn't realize she couldn't talk. It's a little girl who is terrified of seeing someone sweep with a broom but loves to use a broom herself. Autism is listening to Gangnam Style, on repeat, every time we went anywhere in the car. For four months straight.
It's the Wiggles Christmas DVD year round.
It's belly cuddles and bracelet collections and spontaneous giggles.
It's a child who notices everything and forgets nothing.
And she'll swipe your phone in a heartbeat.
It's the 42 year old woman who spent her life being told that she was crazy only to discover that her brain really does work differently from others. And that it doesn't mean she's broken. It's the 42 year old woman who doesn't understand why the world works the way it does but can instantly understand why her child can't tolerate going into a BJ's Wholesale Club.
It does not mean Rainman but sometimes I do hear,"Uh oh, mama!", hundreds of times in one day.
Autism means that 'hundreds of times in one day' is not an exaggeration. 

Autism also means that your mother's mail carrier's autistic cousin probably doesn't appear to be anything like my 4 year old. Or myself. There is no One True Autism. 

Autism is not all rainbows and unicorns all the time. It is disabling to some degree on even the best of days. I will never post about many of Evie's struggles  because being 4 years old does not mean her dignity should be ignored. If she wants to talk about them in a blog someday, that's up to her. I don't mind talking about my own difficulties. I'm pretty much an open book but I don't always work,"I had a meltdown yesterday and beat my legs with a hairbrush", into everyday conversations.
I kinda want to now, though. "Did you see last night's episode of Supernatural? Wasn't Cas hysterical? Speaking of, sometimes I scream and cry and pull hair out of my head when I'm overwhelmed."

Or not. *sigh*

 So what did we learn today? Acceptance = Good. 'Awareness' = Bad. My kid is all kinds of awesome and she wouldn't be herself without her autistic neurology. Me? Every 6 months or so I manage a minute or two of awesomeness but, yes, I wouldn't be me without my autistic brain, either.




Sunday, March 15, 2015

Mothers. Pfffft.

Today is Mothers' Day in the UK so I was looking up images to find one I could post for my friends over there. Holy reverence, Batman! Apparently there are people who think moms deserve credit for 'all they do'. *blankstare*
'All they do'?! But everyone knows that mothers do nothing! Well, I'm sure that technically eating bon bons and watching TV all day is doing something but it's certainly not something important.
Yeah, that was sarcasm. *sigh*


Oh, I don't believe that just popping out a kid makes one deserving of a pedestal on high but it never ceases to amaze me how little respect women get when actually trying their best at raising kids. If the kids are less than perfect it's the mother's fault but when they turn out to be decent human beings it's 'luck'. Like Spiderman taught us, with great power comes great responsibility...and apparently zero credit for any of the good results.

I had a dream last night that a stranger told me I was doing a 'good job' with my kids and I cried. Why should that have to feel like such a big thing? Yes, I was 'lucky' enough to be too disabled to hold a job so I stayed home with my kids. I guess it's also 'luck' that I actually pay attention to the anklebiters and try to teach them stuff. Important stuff like quoting Psycho, appreciating bad 80's music and, I dunno, being good people or something.

Many of us willingly choose to become mothers. Some of us choose to put our children first but few of us knew we were choosing a position where we would be constantly picked apart and disrespected.

So who are the people creating all these reverent images of motherhood?!
.
.
.
Um...probably other mothers.

Friday, March 13, 2015

I Can Dish It Out But I Can't Take It

Advice.
It's a thorny subject for me.

My childhood was less than stellar and I was The Crazy One of the family but, amazingly enough, no one ever acted like they thought I was stupid. My whole life I had adults telling me I was intelligent. They might have complained about my lack of motivation but they treated me like I was smart.

And then I moved into the world of romantic relationships. Specifically, romantic relationships with much older partners. Suddenly it was a miracle that I was even smart enough to remember to breathe. I used to think it was a guy thing but even my girlfriend treated me like I was incompetent and couldn't be trusted to make decisions more important than choosing what cereal I wanted for breakfast. My personal favorite was the Let Me Verify What You Said By Checking With Someone Else game.

Me: "The weather report said it's supposed to hit 65 today."
Them: "Really?"
*later*
Them: "You were right. I ran into Random Person and they said the weather report said the same thing."

Me: *headdesk*
I couldn't even be trusted with something as simple as repeating a weather report. Silly, stupid girl. 

I think. A lot. Generally several steps ahead. Very little of what I do can be considered random. My internal dialog contains some variation of 'If I do this then that will happen' pretty much all the time. Even something as simple as going to the bathroom has a process. Coffee cup, phone and ecig put up out of reach? If I forget and leave them down she could get into them. Door chained? I don't want her taking off. Oh, the door is chained and it's almost time for the teen to come home? Better wait a few minutes so he's not stuck unable to come in. I used to assume that everyone did this but was often frustrated by what seemed to be other people's illogical behavior. Why do this if you know that that will happen? And then act surprised by the consequences?

What does all of this have to do with advice? I know that most people offer advice out of a genuine desire to help but in my life it has often been used as a tool to insult my intelligence. The line between the two can get blurry, especially if I'm having a Bad Self Esteem day.

I don't usually bitch about a problem unless I've already run through the possible solutions in my head so an obvious suggestion always strikes me as a bit insulting. Just yesterday I was sputtering about my new chair being too high and had several people throughout the day suggest that I try lowering it.
*sigh*

I'm having a Bad Self Esteem week which is pretty much why I bothered to write about this in the first place. It feels like so much of what I say and do lately is drawing commentary that makes me feel worse and does nothing to help solve my problems. Most of them can't be solved but having it perpetually implied that it's because I'm not smart enough just compounds the issues.


All that being said, I do try to be careful with the way I dispense advice to others. I know some of the things I do are a bit outside the box and may not be obvious to others. Kid freaking out and being miserable? Try drawing a face on your belly or some other ridiculous thing you probably don't feel like doing because you're worn out from your kid being miserable but sometimes ridiculousness snaps them out of it and then you're both happy. I try to keep my advice limited to those things that were probably not included in the first 15 solutions you thought of yourself already.



So, um, yeah. That's my rant for this week. It was hard to pick just one cranky topic since I had so many to choose from this week. Besides, if I had written about any of the others, folks would have been inclined to give me advice on how to deal with them.



Wednesday, February 25, 2015

Not My Circus, Not My Monkeys.

I've been struggling with social stuff lately. I've never really fit in and, frankly, I often find it hard to like people.
Nobody panic. If you're reading this through a link I've posted, you've made the cut.

I find it difficult to understand why people do the things they do and if their behavior strikes me as illogical my brain can't handle it. My immediate reaction is,"MAKE IT GO AWAY!" Sometimes I can suppress the urge but it inevitably wins out.

In the past week or two I have tried to make many people go away. Turns out it's harder than it should be. When someone unfriends me on social media I might wonder briefly what I may have said to offend them but it passes quickly. I understand that not everyone will like me which is no big deal.
Apparently others don't feel that way. They want me to tell them 'why'. My problem is that I really don't like to be mean and any lies I come up with just sound wishy washy. They're all people I have minimal to no contact with in the real world and it stresses me out that they think sharing a network is so damned important.

I'm feeling a bit like Claire in The Breakfast Club but we really have nothing in common. Why would we hang out, even just electronically? Yes, we all have children but if you think 'the only thing wrong with kids today is that we're no longer allowed to beat them', we're not even occupying the same universe. Or you refuse to vaccinate your kids but spend your evenings with them too drunk and/or stoned to properly care for them. Or I only ever see you bitch about your kids. I like my kids and I like being a mom. All your postings do is make me feel sorry for your children.

And then there's the drama. I just can't do it. I understand that we all make choices that can result in unwanted consequences but when it becomes a lifestyle my brain simply can't process it. The instant I hear things like,"My husband/exhusband/boyfriend/exboyfriend has been in prison for years and will be getting out soon.", alarms start going off in my head. You could be the nicest person in the world who made one bad relationship choice but it's not worth risking my (or my kids') mental or physical health to stick around and find out. My experience with people has been that bad choices tend to be a habit. Most of us learn with time but I don't have the spoons to deal with the process.  Ditto with alcoholics and drug addicts. You may be a great person but I really can't add that to my plate. Been there, done that, have the dead best friend to show for it.

 I have dozens of people in my social networks whom I will never meet in person. The thing is, I would be happy to. From now on my 'imaginary friends' will only be people I would be willing to sit and have a cup of coffee with.