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“Autism is not something I have. It is integral to who I am.” Parrish Knight

“All my life I have dealt with objective matters; hence I lack both the natural aptitude and the experience to deal properly with people and to carry out official functions.”— Albert Einstein

There are few, a select few, that I let in enough to actually know me. There are many out there who know different parts of me but never all of me. Why? Because to know me would give you the power to try to hurt me and that is something that I refuse to allow. That being said, I am fixing to do something that I have never done before: I am going to lay out exactly who I am, why I do the things I do, why I say the things I say and basically bare my soul for all and hope that instead of using this knowledge to hurt me, that you absorb it, learn from it, grow from it and accept it. This is having to be written in steps; baby steps actually. Please realize and take in how hard this is for me to do but it needs doing. No two people are the same. No two autistics are the same. We are all individuals – unique individuals – however we do have similar things in common. It is those things that bind us together as humans and I am sorry but I feel it is time we humans bring back humanity.

Now that I have said all that, brace yourself. This is going to be long. So, let’s get started shall we?

Growing up, I had always felt so different. I even at one point told my mother that she had to have adopted me because I was so different. My awesome Psychotherapist tells me that part of the reason I was such a mean kid to many, was simply because I was in survival mode. Now, here is where this gets hard. I was sexually abused for many years (ages of 3-12). I believe I have every single right in the world to be mad and well, vicious (just ask my older sister, she got a lot of it). I struggled for years to get back to myself and I lucked out. When I needed a guiding force, the goddess provided me with one. She helped me in so many ways. Oh my, I don’t even think I could even tell you how much she helped me and how much I love her even now for all that she did.  I had such a darkness about me. She came along and poof! the darkness changed. I mean, seriously, it was almost overnight; instantaneous. Suddenly, it didn’t matter I was so different, it didn’t matter if I was eccentric, she allowed me to be me. The crazy, loyal, loving, caring me. She is a pivotal person in my life and even now, she touches me and she hasn’t a clue. She took my darkness away and then one day, when I was around 15, she told me that she could feel something bad was fixing to happen. Outside of her moving away, which almost killed me, I could not foresee anything that could change how bright my life was going. However, she was correct. I was raped – not once but three times – by my mother’s brother. I flat-out refused to call him an uncle simply because an uncle would NOT do that. I got pregnant. I was in the tenth grade, finally with the person I wanted to be with and I knew, I knew things had just gone so bad it wasn’t funny. I went through an abortion at 15 (January 15, 1993 is forever embedded into my soul). I went through a court case that I had no voice in regarding, well, anything-sadly. After the bad guy went away, I had a couple of ex-boyfriends start some shyt at school. I mean this was so f’ked up that even a mediation session with the principal did nothing. The rumors, the threats, and then the best thing ever happened to me. I was spiraling down quickly and I can honestly say, I thank this kid (now man) for what he did. He walked up to me, handed me a sheet of paper full of statistics of people who had been raped and molested and their chances for well a normal life or the low life of drug use and prostitution and he said well you are already a ho, so let’s see how far down you go. Even to this day, I can count on 1 hand the number of men I have been with so his thinking on that was a more than a bit off. However, I looked at that and thought, Damn, I WILL NOT be just another number on a sheet of paper. I will not let this consume me. While I have had some bad, horrible choices that I was forced to make, I did so with the best intentions. I left the one person on this planet that I truly loved to well get out of my mother’s house. I was told actually to leave by my Poppy – who I love dearly – and do it under the cover of night, so I did. I left the hell hole I grew up in, in May of 1994. What I didn’t know was that I was just walking into more trouble.

Now some of you may be going why she telling us all this and what does it have to do with autism? This stuff, this very painful stuff, is integral to who I am. If you are offended by my life story then please stop reading now. For the rest of you, let’s keep going.

So, for two years, I lived with someone who was seriously not the compromising sort of fella. Meaning he prohibited me from seeing to or speaking to my family. After 2 years, I basically rebelled against him and went to my Poppy’s house, I even spoke nicely with my mother. Her and I came to an agreement of sorts: she could be my friend but not my mother. Even after all these years, she maintained that up until recently. In truth, she was the only person I speak with in my family. I do not talk to my sisters, I don’t have any family on Facebook. I don’t want their drama or bullshyt. I don’t want nor need their opinions or comments. In truth, as hard as this is to say, they mean nothing to me. They have never reached out to me, they have never offered to help me. No. They are not needed nor wanted in my life. But, I regress. Back to the man I was with. I grew to hate him, more on a daily basis. While that was going on, who showed back up in my life? Remember in the above, the one I truly loved? Yeah, him. Dear Goddess, that was probably the best thing to have ever happened to me at that moment in time. However, due to some weird sort of ethics or values, I found out I was pregnant so, I ended up marrying the guy I moved out with. Now, I cannot begin to tell you how hard THAT was. A second chance does NOT come often and what did I do? Blew it out of the water. At any rate, my marriage was not so pretty. I lost my first pregnancy at 5 months (March 24, 1998). [For the record, I am sat here crying. I feel like I have sliced open a vein and my muse is pouring out what it believes is relevant. You know, in case you were wondering] My husband thought for a long time that I was his personal punching bag but here is where he messed up. I was brought southern style. Which meant I was taught early on, if ANYONE ever hits you out of anger, hit them back and hit them back harder. This was my marriage for a long time. I do have to wonderful kids that came out of that marriage and I can say are the best things to have ever happened to me. Although, I took a lot of shit for leaving them with their father when I left him. Here is the thing: As much as he hated me, he loved those babies. I KNEW they would be taken care of. I didn’t know where I was going, where my next meal was coming from and I am sorry but that is  no place for an adult to be but I will be damned if I was going to put my babies through that. HELL NO, especially as I knew they were safe and ok. Unfortunately for my ex, he told them that mommy died. Karma will bite him in the arse for that one. I truly can’t wait.

Now, this is where the autism bit starts. My oldest son (Alpha) has classic autism. My youngest son (Omega), is like me. He is a High Functioning Autistic but has never received the help he so desperately needs due to my ex wanting to have “normal” kid. My argument of define “normal” never helped. When I left, I had fought for my county to implement autistic preschool settings within the school system and won that. Never ever tell a Mother that her child is ‘unteachable’ because that is just a challenge and one we will gladly accept! Yes, I was told that about my Alpha. Part of me regrets beating the hell out of that woman and IF I hadn’t had both my kids with me that day, I would have very gladly gone to jail. YOU DO NOT EVER TELL THAT TO ANY! Anyone can learn. It just takes the right environment and the right attitudes to accomplish it. Sad to say (not really) that woman got fired, that day. I just was NOT in the mood. end of statement!

After leaving there, which took all I had. I realized then it was me against the world. So freaking what if I was told my kids were unteachable. I didn’t agree at all. I believed that the problem was not my kids or me. I believe and still believe that the problems were theirs. (sorry I need coffee-things get hectic from here on out) Needless to say, I fought tooth and nail for my kids to have the help I was denied. I do not want them growing up thinking ‘damn I just really don’t belong here’ because more than they know, they do! I did that for them and in absolute ways. To say I never want my kids to go through have of what their Mommy has gone through is an understatement. I have walked those same shoes and really would hate for them to have walk them. I want so much better for them both. They (Onslow County School Board made autistic — not to be misunderstand as regular special needs class rooms — and the program took off!) That was some I was very proud of achieving not just for my son, but for all those other autistics out there who thought school was too big a milestone!! Everyone deserves a chance to discover their passions and make their mark upon the world, like countless wonders have done.

Now that you have a bit of back of my backlash, cause believe me, there is so much to add to it, welcome to my world of enlightenment.What

What many of you don’t realize is, I didn’t just name this page this because I wanted to start debate on debate. FAR, FAR from it. This page is for anyone who is on the spectrum, has a relative on the spectrum, IS on the spectrum and even for all those who think NO ONE CARES ABOUT THEM! I want to talk about some things that are very common to me. Of course I think my computer ate my notes, but no worries I am positive I can locate them. And wouldn’t you know it, I found them in just a couple of clicks, Go me!

The first thing I want to talk about is this. However, according to  Taylor G, Bagby R. Parker J  in Disorders of thee affect regulation. Cambridge: Cambridge University Press: 1997

Taylor et al. (1997) noted that Alexithymic individuals are “unable to identify accurately their own subjective  feelings, verbally communicate emotional distress to other people very poorly, thereby failing to enlist other as sourced of aid and comfort” In addition they note that persons with Alexithymia  have a preference to be alone or avoid people altogether.

Alexithymia (as noted in the DSM IV

Alexithymia is considered to be a personality trait that places individuals at risk for other medical and psychiatric disorder while reducing the likelihood that these individuals will respond to conventional treatments for the other conditions. Alexithymia is not classified as a mental disorder in the DSM-IV. It is a dimensional personality trait that varies in severity from person to person.

However, according to DSM-IV it doesn’t sound like much but the reality of the situation is FAR, FAR worse. Alexithymia is hard to explain to those who don’t have it so for once, here are my shoes. Put them on for just a minute if you would. I will wait. hehehehe. lalalalala. Got em on? OKAY then, let’s go. When a NT is asked “How are you feeling today?” Most reply (from a research point of view) OH, I am fine (great, awesome) “how are the kiddies” OH, they are doing much better, thank you for asking!” <~~ normal conversation, for an NT that is. Now that you are in my shoes, lets redo those same questions: “how are you feeling today?” OH, well, um, I am feeling happy, sad, exhausted, exacerbated, tired, sore, etc (this list could on for absolute hours) Now: “how are the kiddies? (same situation here) OH, well um they colored the walls yesterday, We took em to the movies and had to leave before it started, their babysitter no longer wants to keep them) and this too could go on and on. Alexithymia simple, well in a layman’s term – stops you from being able to TRULY feel what your emotions are. You MAY know happy or sad or anger. That’s IT. Any thing and you are venturing into uncharted territory. This makes it quite difficult for a person to interact not only with family and VERY close friends but dear Goddess, put a kid in school and it becomes a night mare waiting to happen.

I thought for years because I couldn’t tell one emotion from another, that they were all the same. I spent MANY, MANY years trying to understand this concept. I still struggle with it at   38 (yes that is my real age and yes, I totally put it on the internet). It is only recently that my lovely physcotherapist pointed out that while I have this, this is a part of me. It also makes me, well me. My Pyscotherapist is, In my most sincere honest opinion, the absolute best woman. My love assignment was to finish this post. She is itching to read it.

My one hope, my one sincere hope. Is that you read this and understand NO ONE WITH A DISABILITY truly has a disability. They can learn, they can even communicate (even if not verbally) and that most, have Alexithymia. This is something hard enough to go through on one’s one. It truly takes a village of people to help one overcome it, if that is even possible and here is the bottom line, IF for one moment, you think that this is the only disorder out there that has a comoribacy with another then you are in for one hell of a big surprise.

I do what I have to do in order to survive. I do not care if that pisses off another. These are my shoes and no one can walk them but me. I have said this many, many times. I DO NOT HAVE A VERBAL FILTER. What ever comes out my mouth is about 99-100% how I feel about things.. that is not to say in normal conversations I don’t screw up, cause I do it a lot. It means, well you have to be patient with me. I am still learning how to cope with my HFA (high functioning Autism) I am sorry if I offend you but if you would listen to me, perhaps you wouldn’t be.

The best words I have for today are this:

“Don’t judge a book by its cover. You never know what may lie inside its pages.”

As Proust famously wrote:

 We pack the physical outline of the creature we see with all the ideas we already formed about him, and in the complete picture of him which we compose in our minds, these ideas have certainly the principal place. In the end they come to fill out so completely the curve of his cheeks, to follow so exactly the line of his nose, they blend so harmoniously in the sound of his voice that these seem to be no more than a transparent envelope, so that each time we see the face or hear the voice it is our own ideas of him which we recognize and to which we listen.
It is my wish that some of you can gain some knowledge as to what it is like to be disabled in any way. I am be High-Funtioning Autism but if you think that this applies to just that and that alone, then you truly need to read this with an open heart.
 
As Always,
Ms. Pengelf
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 PS- If you need further information, just let me know in the comments and I will answer any and questions that I am able! Thanks for Following the Rants and Raves of a Mad Pengelf!

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