It was a private school.

I had to be there before it opened and after it closed because of my mom’s work schedule. My mom also worked there part-time in order for me to go to that school, along with her other jobs. I had to help out, setting up for the school days and clean up after as well. I really didn’t mind that at all, I actually thought it was fun. I did not like the horrible way the woman talked to me or the things she said. I recall her calling me stupid if I didn’t hear her or understand what she meant by what she said.

I believe I wrote this before but I can’t remember where.

There was one time she told me to do something and I couldn’t hear her, she repeated it and I still could not understand her. She then told me to “Get my head out of my butt and listen”. I stood there devastated by the image that was in my head at first, how that could possibly happen? Then I realized it was an awful thing to say to a 5 or 6-year-old, even though I did not fully understand it. I was extremely upset and still confused by the time my mom came and got me.

My mom knew something was wrong because I had shutdown.

She finally got out of me what had happened, my mom then marched into that woman’s office. I do not know what she said but she did have some choice words for her and the woman never said that to me again. However, she still wasn’t the most pleasant woman. All of these thoughts about my intelligence have resurfaced recently because I started reading John Elder Robison’s book Look Me in the Eye, now he has a new one that I would like to get as well, called Be Different.

As I have been reading it I have seen many similarities and CLEAR differences.

I really enjoy reading from other ASD perspectives. His humor is a bit on the darker side for me but I get it. (This is kind of a big deal since I have a hard time with certain humor.) As I read the last chapter called “Collecting the Trash” I laughed so loud that I thought I would wake up the kids. I just started reading Chapter 11 “The Flaming Washtub” and it is hard to put it down. He truly is a great story-teller. I actually found out about John Elder Robison through watching Running with Scissors, (I did not read the book) I was so intrigued by the story that I researched the writer that the memoir was based on. They are brothers. None of that really matters I guess, I can’t help myself.

Anyway…

As I read Chapter 9 “I Drop Out of High School”, I was very interested because I dropped out and I felt completely inadequate, dumb and embarrassed by this for many years. As I read this chapter I could relate to so many things and I felt relief. I read the part about it being suggested that he get his GED, and if he got at least a 75% they would treat him as a graduate and he could leave high school. He took the test and got 96%. They offered him a diploma for a small recording fee. Here is the part that I so wish I could do, the clerk told him $20 and he said “No thanks” then added “I don’t need your diploma”. GEEZ! I wish I could do that. My personal story of school is not a good one; it wasn’t that I couldn’t do the work it was that I needed to be taught differently. I also had a lot of social confusion and other issues going on. I got labeled “Basic” and “Intermediate” early on and then categorized in classes with fellow classmates that fell under those labels.

I assumed the authority figures knew what they were talking about.

They all thought I was dumb, so I must be. I now understand that I have dyspraxia and other forms of dyslexia. At an early age I spent a lot of time reading out loud, I believe this helped me a lot. My mom encouraged it as well so I think she helped, along with encouraging reading all the time. I still do this if I am unable to get the words to read properly in my head from the page. Sometimes they dance or have too many colors. I have difficulty with my auditory processing, which caused a lot of problems in school. A lot of things would just mesh together and not make anything coherent in my brain. The sound from chalk boards hurt to the core of my body, the dust and the smell would make me sick, even if I was in the back of the room.

I had test anxiety my whole life, but my teachers thought I was just being disruptive or lazy.

I got to a point where I would just write whatever, leave it blank, or circle multiple choices based on random images in my head without even reading the questions. When I decided to quit high school, they pretty much didn’t care. My freshman year I got expelled for skipping too many days. I got back in after meeting with the school council with my mom. We shared how she was going through a divorce. Also how I was taking care of my toddler sister and baby sister after school, evenings and weekends while my mother worked. I was helping to take care of the household as well as going to school. They seemed to have pity on us and let me back as long as I pulled up my grade point average, I did. My sophomore year, I continued to skip, especially once I got a car and I got expelled for smoking in the bathroom several times. I quit smoking in 1999. Yea!

The winter of my junior year I started working and found my new special interest, work.

By the time my senior year came along, I had so many meltdowns in the vice-principles office, had been expelled, skipped so many days, had extreme social anxiety at school, and was only happy at work that I decided to quit school. I went to work full-time. I was my happiest when working. I could escape the troubles of home and I had a bit less responsibility. My mom however, did expect me to keep up with the house and help with watching the girls. I did get my GED much later in life after several years of not being in school. I took it without preparing at all and I also had to take a test on the Constitution, I didn’t study for that either. I got a passing percentage for both but I do not remember now what they were. I am not going to attempt to find it, I passed with a pretty high score on both, and I do remember that.

It didn’t matter to me though, I still felt stupid.

A GED wasn’t a high school diploma and in my mind it was much lower. I realize now that is not the case. I do wonder at times, if I would have had a teacher who gave a vested interest in me, if I would have gone into academics. Who knows, it doesn’t really matter I am very happy where I am at. I am also on a journey of accepting myself completely and that means rejecting the labels given to me in school by my teachers, schools and fellow students.

My mom never labeled me with those things.

However, she never said anything different either. She would only say things like, you are smart enough to get school done, just get it over with. Her mom had said something similar to her because she wanted to quit too but she didn’t. She finished out and got her diploma, even though the school didn’t want her there because of her “condition”, being pregnant at 16 yrs old. She later went to college for a few years, but had to quit because she was working several different jobs and had to take care of me also.

I personally just wanted to work.

I had no desire to go to college because I thought it would be the same as high school, no thanks! I read this article recently and found it interesting, College is a waste of time. Though, I do now have some desire, it may still be a part of my future. I did very well at work; I was good at everything I did so I stuck with it. I didn’t have feelings of inadequacy or incompetence. It didn’t even cross my mind. But I still felt inadequate at times, mainly for social reasons. At times I feel like if I don’t have the education through means of schooling, than I have no right to talk about it.

All my reading and researching means nothing to me, it is never enough.

I do not hold others to this standard and I am not sure why I do this to myself. It is at those times when I am feeling that I am not qualified to say anything or write about something, that I wish I had that trait that John Elder Robison has, I wish I didn’t feel need for validation. I wish I didn’t have that self-doubt. David has that trait like John and I admire it very much. Although, there are times that it can be a bad trait, if used wrongly or if the person has an unteachable spirit. I still think it would be nice sometimes to allow myself to just say “You know what, I have an opinion and based on what I have read, I am allowed to share it without any anxiety.”

I am working on these feelings; I do not think they are all wrong, possibly a bit misplaced.

I have an additional “flaw” that people really started to point out as I got older.

I have a birthmark on the side of neck. It is port wine in color and only about an inch of it shows on the side of my left jaw area, the rest of it is about 6 inches along the side of my neck all the way to my head, and it goes into my hair-line. When I was a baby it actually took up most of my neck. It is not a dark purple, some people have asked me if I have had treatments because it does look a bit faded but I have not had treatments. It is really only noticeable when I wear my hair up. As I got older I kept my hair very long so I could cover it up from people. I hid behind my hair for a very long time.

I had people and kids make mean and rude comments to me all of my life about it.

I did try make-up but my sensory issues could not handle it, I can’t stand foundation or pancake make-up on my neck at all. My mom and I discussed doing treatments when I was around 16 yrs old, she told me that she didn’t see any reason for me to do it but that if it was such a source of pain for me that she would be willing to pay for the procedures. She told me to think about it on my own and make my own decision. I talked to some family members and friends and all of them said that it wasn’t noticeable to them and it didn’t make me ugly. I wanted so much to believe them. I based my decision on the fact that I felt like I was the way that I was supposed to be and if I were to go through treatments, it wouldn’t be for me it would be for the acceptance of people. I decided then and there to never consider it again.

Even though I made that decision it was still hard.

People can be cruel. Since I had long hair I would always put it on top of my head in silly styles just to get it up out of my face, I would forget that I even had a birthmark. Though, I purposely would lay out in the sun and get as dark as possible to ensure that it would look lighter. Then while working, minding my business or being out and about at a restaurant or store, someone would say “What is that on the side of your neck?” “What happened to you?” “Did you get burned or something?” “You know you can have that thing removed.” All kinds of comments that for some reason society feels the need to say to someone who has a difference. I have to confess on the day the woman told that I could “have that thing removed” I looked right at her and said “Well then I would be just like you. I like me for me.” She was taken back and stumbled on her words trying to sound like she didn’t mean them offensively. I am sure she meant well but on that day I was amazed at the words that flew out of my mouth.

On that day I actually stood up for myself.

Even though I didn’t feel that I should have my birthmark removed, I still would be affected by the rude comments people would say. But I did not let it stop me, one year I got fed up with having long hair, it was too much to take care of, so I cut it all off  up to my jaw line. There was my birthmark out and open for all to see. I lived in a city where people didn’t much care, it was too big and too diverse for most people to notice my birthmark. When I moved back to my hometown, to various other cities that were quite a bit smaller, including this one, people were quick to point out my “flaw”. By this time though I would just be polite and tell them it was a birthmark and smile. But I still felt the impact of the pain, the hurt. It still happens and people close to me don’t think anything of it. David and I will be out and someone will stop and stare, gawk and I just look at them like “WHAT?” on some days I have said it out lout, I admit.

David has no clue what is happening until I tell him.

Same with my mom, my sisters no one ever thinks of it but they have never been ridiculed or pointed out for having such a flaw. They don’t see it, they see me, it is part of me and to them it is not ugly or a flaw. As I am writing this now I am getting a bit teary eyed, I haven’t thought about the pain and the fixation that this had caused me with my appearance. Reliving those experiences are hurtful, I would like to say that it stopped into my adulthood but unfortunately adults still say the same things as the kids did in school to this day. The difference now is that I understand how that and my weight were triggers for me to have such a jaded and inaccurate view of myself. As I read over the article I realized how much I have grown, though I still do not see an accurate view of my body or even my birthmark, I intellectually know that what I see is not true.

I have been able to overcome my eating disorder.

I have also been able to overcome a lot of my dysmorphia thinking, through applying cognitive behavioral type therapy at home. I have changed my way of thinking about all of this and David has built into me to help me have a better self-image. He hasn’t told me what to think he has just been a positive reenforcer during my struggles. It helps that he lets me talk about just whatever. In this particular area though he told me that I needed to get a positive self-image for Ariel and the boys. The things that my mom says about herself are not true, she still does it and it has been damaging to me and my sisters about our own self-image. She is working on it and we have been talking about it because David made a very good point by helping me to realize that if I did this in front of Ariel she could have the same problems. That made me more aware of what my mom says around Ariel as well and I explained it to my mom. She has gotten more receptive in this and doesn’t want to influence Ariel in this either.

Though my mom tried to make me confident in who I was she diminished a lot of it with her own self-destructive talk.

The obsessive weighing myself has stopped, I am letting myself be at a normal weight without doing negative talk, I am not concerned with hiding my birthmark, and I am feeling pretty good with where I am at. I have come a long way in this area in the past year and I hope to continue. Dysmorphia is not about vanity, I am not sure how it affects someone on the autism spectrum. I believe the reasons for dysmorphia may be different from other people though. My whole reasoning for hiding my birthmark was so I would not upset others. I felt bad for making people feel uncomfortable. When it came to my weight, the first reason was to make my boyfriend happy or my mom proud of me for being skinny. My mom never put those terms on me but in my mind her concerns about weight and image meant that. The boyfriends who said that I needed to lose weight were trying to control and manipulate me. My eventual obsession turned into my need to try to control my own world. My weight was the only thing I could control solely.

I don’t know if others have had these issues or not but I felt such a release and sense of achievement from reading that today that I had to write about it.

“I must not be good enough, that is why they treat me this way.” After that ended, we kept in touch for the whole time I was in another state. Every time I came home to visit, I would see him. I thought there was still something there. Even when I had found another love, I continued to keep contact. I was so confused by all of that. Later after my third relationship ended (I will go into that in a moment) I thought possibly this was the time for us to get back together. He wasn’t dating anyone either. I went back to visit and I thought there was something there. I went back a few months later to to tell him I was thinking of moving back.

Another devastating blow.

We were supposed to go out with a group of friends and we did. BUT he had made a date that very day and was supposed to meet her at the bar we were at. I was hurt, furious, confused. Other people may have understood this but I didn’t. I thought he wanted to be with me. I was supposed to stay the night at his house, my things were there. Needless to say I was drunk, I lost it, I got crazy and don’t even remember the events of the evening other than he left to meet the girl. And his close friend got all chummy with me so we started a long distance relationship. I needed to sever ties with my ex and this was the only way I could bring myself closure.

Come to find out my ex didn’t care anyway and no harm was caused to him, only me and the friend.

I wasn’t very nice to the friend. Back to the third relationship, even though I was stuck in a cycle with that ex,  I thought my new boyfriend was the greatest thing that ever walked the face of the earth. Well he is pretty great now and he is the one who truly cared for me but didn’t know how. He is now married expecting a child and very happy. We are very happy for each other.  Although he was  not the greatest while we dated. He was a social butterfly. He was always out, always surrounded by the ladies, always thinking of traveling. He caused me to have trust issues too. He wouldn’t come home, when he did come home he would have phone numbers and sometimes makeup on his shirt. He made comments about things I needed to change to “better” myself. Actually all of them did, that did not help my self image. Never good enough. NEVER!

He did a similar thing as my second boyfriend.

One morning I answered the phone and there was a Swedish man on the other end asking for him. My heart sank I knew something was going on. So once again I found myself in a position of being in an apartment by myself  struggling to pay for it. He went behind my back and decided to go off to Sweden to work. I stayed with him while he was gone. Long distance relationship is very hard for someone with trust issues. I did get to go to Sweden but that ended up bad also. We came home together that was not supposed to happen. He had left me on my birthday in the apartment he was staying at and did something that caused him to have to leave. It was nothing major but enough to get sent home.

I found myself using my credit cards to get him home and off we flew back to the States.

It didn’t work well when we got back. We ended up breaking up. I had trust issues. Along with many others by this point. These three guys helped to make me even more confused and unable to understand relationships even more. There is so much to these stories it is very hard to limit them to a blog post but the point of sharing these things is to show that I was not stupid, I just didn’t realize that what they were doing was wrong. I thought I was wrong. I saw other people in relationships and they were not treated that way so the conclusion I came to was it had to be me.

The weird thing is after the relationships would end, people would then tell me all of this stuff that was going on.

What? I had no idea they were doing these things. When they would talk to me in a certain way, other people would think it was horrible and I was oblivious. They would make fun of me and belittle me but when we were alone they told me they loved me. I was confused. I didn’t understand. It was like the bullies who pretended to be my friend and then would hurt me. I thought it was me. I was the one who wasn’t normal, I was the one who didn’t understand how relationships worked, I had to rely on people like them to guide me.

Because of that I spent years in pain, confusion, constant self hatred and doubt.

Go check out part III for the rest of the story…