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.