Tag Archives: autism

She Is Me. I Am Her. (The Female With Aspergers)

Standard

Image

I have gone back and forth over how to write this blog. I’ve actually never given a piece as much thought as I’ve given this one. My typical writing style involves relaying information based on life experiences, feelings, and perceptions. This one HAS to be a little different, while still putting all of those things into it. You see, writing about women and girls with Aspergers is no simple task….and yet, I know the information more than any other I tackle. I know because I have Aspergers. I am Aspergers. My daughter is Aspergers.

I am forever reading the words, “My child is more than autism.” I absolutely understand that thinking. I won’t argue that belief. We are just people, like everyone else. I will, however, simply state that until one has this condition, they can’t quite understand why that statement isn’t exactly factual…or how much comfort knowing about one’s Aspergers brings to them. Aspergers is why I am who I am. It is why my daughter is who she is. I can no more separate myself from it and the way it causes me to be, than I can change having green eyes, big bones or brown hair. I can camouflage all of those things, but they are still there. They are still 100% me all of the time.

Most parents of Aspies have a goal to show their child their worth and how to feel good about themselves in spite of Aspergers. I choose to feel worth and show my daughter hers because of it. I like me. I like her….with good reason. In this piece, I’ll share this condition as it affects females, in the best way I know how….from my heart…and my life experiences. I’ll also share the factual, scientific details. Understanding women with Aspergers is unlike anything you will ever attempt. We are complex and ever changing. We are bold, yet timid. We are honest to a fault, yet hide ourselves in the “acting” we display for the world. We are deep thinkers, while completely simple things escape us.

When I was a child, I remember feeling like I was in a bubble. I was right there with everyone, but also in my own, very private, world. I listened to people converse, and I would have most of my part of the conversation in my head. I didn’t share a great deal of what I thought, because my thoughts weren’t like the words I was hearing others say. I didn’t know why. In my very young years, I didn’t question it, but I did notice it as early as five….particularly when I went to school. I liked people, but I really enjoyed playing alone. I was an only child, so that was fairly easy for me to do. I could be myself, when I was alone. I could talk how I wanted…to my imaginary friends, to my animals, to God. I was deep. Always. I pondered life’s complexities and questioned everything. I was timid and quiet, in my young years…and yet when I became comfortable with people, I was a performer, always sure to bring a chuckle and a smile. My moods were ever shifting. I craved solitude, and then felt lonely in the privacy I sought out. I did a lot of playing outside alone….where no one could hear me talk to myself. I sang, talked to God, imagined I was in a foreign land, and typically pretended to be someone other than myself. I would swim in my pool and become a mermaid, discovering the beauty of the sea. When I went to bed at night, I was like Shirley Temple in The Little Princess, waiting for a mysterious man to come tell me I was in the wrong place and carry me off to my destiny.

I escaped into other worlds regularly. When I discovered The Chronicles of Narnia, I went with Peter, Lucy, Susan and Edmund. I lived that life. I was there. It felt like home to me. When I wasn’t reading those stories, I felt homesick and disappointed with reality. I drew, painted, made cut paper artwork and any other kind of art I could imagine. I liked the quietness of it. It made sense, when so much didn’t. When I played with other children, I tended to control the play. I needed a script to follow, and I needed them to cooperate. To my knowledge , they never felt controlled. For me it wasn’t even about being in charge, but about inviting people to be a part of my world, as I was a part of theirs. I enjoyed playing a mother. I wanted to take care of everyone. Looking back, I realize there was a desire to make everyone feel loved and special. My dolls, stuffed animals, my possessions were real to me. They felt emotions. They needed me. I was justice. I was love. I was a protector.

My favorite friends weren’t even kind of close to my age. They were the elderly. They were my next door neighbors, Mrs. McGee and her husband, “the man Mrs. McGee”, as I called him. They were my grandmas, my grandma’s next door neighbor, my grandma’s best friend, who would write me fascinating letters and send them to me in the mail. Those people were my dearest friends. I loved their stories about a time that was different from the world I knew. I loved to walk through their homes and see the old things that had history. I wanted to go to that place in time. I wanted to escape.

I remember having so much frustration that I was afraid to show. I would pull my hair and cry uncontrollably in private. When I was eight years old, my parents owned a pizza place. I made a “house” in the back of our station wagon, where I could be alone while they worked. One evening, I was sitting in that quiet car, looking into the restaurant. I watched as people talked and laughed with my parents. I started to cry….just a little at first….and then I gave way to most intense cry I ever remember having. I felt alone. I felt like everyone was enjoying me not being there. I felt more than just a window between us. I was different, and I didn’t know how to tell anyone.

As the years went by, I became more outgoing. I accomplished this by pretending to be other people. Whoever I was with, I would mimic. I was never true to me. I was always working to blend and fit in. Soon, I didn’t even really know who I was. It definitely wasn’t any of the roles I played. I was one person as a daughter. Another as a granddaughter. Another as a friend. Another when I got my first job. Another on the volleyball court. Another as a girlfriend. I was a million different people, but none of them were the real me. They were either fragments of me or lies. I mimicked actresses that left an impression on me in films. I became characters in books. I was intelligent. I knew how to hide myself…how to behave in certain companies as to not bring attention to who I was on the inside. There was, however, an underlying fear that all of these people would one day get together and discuss the me that they knew. I was petrified that my false identities would be shared and that I would no longer have anyone at all. I felt like a liar….and I never wanted the truth known. Deep down, I wanted to just be me, but I didn’t really know who that was….and I wouldn’t for a long time….thirty plus years, to be exact.

Image

As I watched my daughter grow, there were no red flags…not for a long time. She was happy, vibrant, the center of attention most everywhere she went. She was/is magnetic. People love her immediately. There is a depth, an intelligence to her, that cannot be matched. She’s artistic, contemplative, wise beyond her years, funny…..an actress. When she turned seven, some things started to catch my attention. She didn’t like to be touched in certain ways. She enjoyed being alone. She controlled play when she played with others. She began escaping into books. Her mood and characteristics changed, as she would read. She would watch movies and become so a part of them that she couldn’t separate reality from fantasy. She would mimic actresses. She would speak to me in movie lines. She would become angry, violently angry, when she didn’t understand things. She would become so caught up in her closest friends that she couldn’t stand life without them. She didn’t know who to be, when they were gone. She lined up her ponies from one end of her room to the other. She would design (still does) elaborate homes for her Littlest Pet Shops, yet would rarely play with her creations. She would stare at her miniature animals, love them deeply, carry almost 150 of them with her everywhere she went, but wouldn’t actually play with them like other little girls did. She was, and still is, obsessed with them. She breaks down when she forgets them at home. She speaks in accents some days….pretends she is in a foreign land. She will sit with the elderly and listen to their stories, just like I did. She’s enamored by a world she’s never been to. She likes her privacy, and yet it makes her lonely. She cries easily and can’t explain her feelings without becoming angry and screaming.

She is me. I am her.

There is so much to our identities, that I could never write it all in one simple blog. By now, if you have Aspergers, or your daughter does, you have said, “That’s me. That’s her.”, while reading our minor descriptions. I have searched for the best ways to describe Aspergers in females. While the details are so very vast, I feel I have extracted the best ones for you here….

-Emotionally exhausted and distraught due to constantly trying to process personalities and the “right way to be”

-Overly apologetic when making mistakes or lashing out

-Low self esteem and trouble with her own identity

-Can be overly well mannered and behaved, deterring anyone from seeing there are problems

-May enjoy escaping into nature or “other worlds”

-May be very in tune with animals and love them more than people

-May be very nervous or standoffish at the beginning of a social function then completely comfortable, not wanting to leave, near the middle and end

-Vulnerable to peer pressure and bullies. Can easily be taken advantage of. More prone to be used in sexual ways than those with better understanding of the dynamics

-May have one best friend that she relies on to help navigate social situations, whether said friend is even aware of the role they are playing

-Feels defective and like she must hide her true identity

-May collect certain toys or objects and has a strong desire to keep them organized and close to her

-May have an intense connections to one or several fictional characters. Has a feeling that she is a part of them and they are a part of her. May feel like they would return the feelings, if ever they met

-May have in depth knowledge of certain topics and very little knowledge of the “simple” things

-May have an intense interest in reading and art

-May not play with toys like other children play

-Can be fascinated with other worlds and eras

-Feels like she is from a different time and is out of place

-May be a tomboy

-In adolescence, she may become obsessed with her appearance. Having to have it “just right”

-May not be into the latest things that every else is into

-May care very little about fashion, to the extreme that it angers her

-Enjoys male friends more than female friends. Finds males easier to understand

-May prefer to be alone

-May be very outgoing at home and extremely quiet and scared in public

-May have imaginary friends

-May enjoy writing her feelings or works of fantasy fiction

-May have more adult friends in childhood

-Notices little things that others don’t….sights, sounds, smells, textures

-Aversions to some foods

-Prone to eating disorders

-Can be overly motherly from an early age and is fascinated with having children

-Can be too blunt and speak her mind, offending others and losing friends

I hope that this has helped you understand yourself or your daughter just a little more. More than anything, I want you to understand that Asperger women CAN live a happy, full life, when given the support, love, respect and guidance they need. Education and acceptance can carry your family through any of the storms.

This truly is a wonderful life.

Image

Advertisements

Creepy Cliche Comments…or the CCC.

Standard

“Everything happens for a reason.”

 

“God won’t put more on you than you can handle.”

 

“I couldn’t do what you do. God knew what he was doing, when He made you a special needs mommy and not me.”

 

These are “compliments”….little words of encourage we get… When you’re at the beginning of your autism race, you hear these words and you smile, offer a clique answer back, or use that moment to spread autism awareness, while the other person kind of listens and cares for second….right up until they go eat dinner with their family…in public….like you can’t.

 

We KNOW they mean well. We WANT to be polite….but somewhere inside of us squirms words we can’t let out…”Really? So your child pops out with autism and you wouldn’t be able to deal?….I don’t think you mean that….does God see me flipping out right now, ALMOST not handling it anymore?…and what IS the reason?? Our numbers are at 1 in 50. Is there a reason? Or is it a side effect? An epidemic? Do you think about that?….Cause I do….. All the time.”

 

But….we don’t say any of that. We are pros at that “taken with a grain of salt” thing.

 

Did God hand pick us? Luck of the draw? Does everything happen for a reason? Will he finally pull the plug, when I say I can’t handle anymore?

I don’t “preach” much in my blogging world, but I am a Christian …it has everything to do with everything for me, so I’ll give you my spin on the truth behind these common phrases we hear. I don’t think EVERYTHING happens for a reason, except to glorify God…and don’t GET me started on all the crappy things that have been used to bring Him honor…I think some things happen because that’s LIFE. The Bible say, “All things work together for good for them that love the Lord.” I know for a FACT he can turn something messed up into something fantastic. That’s all I need to know.

 

Does He not put more on us than we can handle?…What He said was, “I will never leave you or forsake you…..with Me, all things are possible.” I think He’s saying, “This jazz is gonna be hard…look at me in my eyes…I’M NOT EVER LEAVING YOU.” (I’d like to think He says “jazz”,anyway.)

 

I believe the best thing to do is see the heart of all the words that are said to us….educate where and when we can…be polite…and, on occasion, when the need is there, be a super hero.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Learning to be Unorganized

Standard

When I was a young child, I didn’t fully realize that I would really rather play by myself than anyone else, because I was an only child. I didn’t have a lot of options, save some cousins and a few neighborhood friends. I found my happiness in many outdoor activities, art, and building my dolls houses. I never had a real doll house. “Awww…poor Erin.” No, no…..I didn’t WANT a plastic, boring doll house that all the other little girls had. My mother was an Avon lady. I got many things from Avon as a child, but my favorite things were the boxes the merchandise came in. SO sturdy. The perfect size. The perfect shape. I would stack them… one on top of the other…and side by side. I would spend hours constructing the homes…coloring their “doors and windows”….pasting magazine clippings as pictures on the walls….perfectly placing strips of cut fabric for rugs. I had little use for anything store bought (I am still this way). I was in a zone. Don’t talk to me….don’t touch me…don’t tell me lunch is ready. I didn’t want to do anything except build and design and see the thing through. “Oh you must have had so much fun playing with your Barbies in these masterpieces you poured your little heart into!” No….No I did not. I tried. It seemed the next logical step. I built the darn thing FOR my Barbies…..WHY didn’t I want to use them for their intended purposes? Because the construction and design, as I now understand, was what I wanted to do. That was what I loved. That was what held my attention.

I grew up and became an adult and didn’t really think much about those doll house building moments much more. What I did think about was the fact that every time I had a project I needed to work on, I had to go through the entire house and organize everything before I could focus. I have four children that I homeschool. I have an online vintage business that I run. I have books, merchandise, toys galore in this house that take days to organize. I KNOW that I have to focus on the task at hand. I HAVE to list my items online, if I plan on making money. I HAVE to sit down and sew if I’m going to be a part of this craft fair. I HAVE to paint this picture that my mom asked for 6 years ago. BUT….in my mind, none of this is even close to possible unless I have complete organization. So…I organize. DON’T talk to me. DON’T touch me. DON’T ask for lunch yet. DON’T make me listen to your stories. I am on a mission and I can’t be bothered. I HAVE to see this through or I won’t sleep…I won’t EVER be able to cook again. I won’t ever be able to teach you what you need to know, if I DON’T get this place organized…..again. “Mommy, you just organized last week.” It wasn’t until I started hearing these statements from my little girl that I realized I had a problem. My Aspie mind saw this as a logical step. Organize first. Work later. But work rarely came. I felt I had done what I needed to do.

After the realization that this was an obsession, I have worked very hard to live how I need to live. To focus on what’s really important instead of what my brain tells me is most important. I’m not quite sure I’ll ever get over the devastation of not having everything in it’s place, but I do know I’m trying. I do know that I look up from my stacks of papers, art supplies, and mounds of fabric and see four sets of eyes that need their mommy to “let it go” and enjoy life….not just the process of working through life. I will have too much laundry. I will have too many crumbs on the floor. I will be disorganized sometimes…..but I will have memories….I will have hugs…I will have happy, well loved children. And THAT’S what it’s all about.

The First Week of the Rest of My Life

Standard

It’s not as if I didn’t know I was different all along. There was the isolated feeling in the middle of a crowded room….never relating to anyone no matter how many people I “tried on for size”…never liking the same kind of boys my friends did. I mean sure, I dated the same guys… but the boys who captured my heart were always a little strange. There were uncomfortable silences after I would make a joke. I had friends become angry and ignore me for weeks/months at a time, and I didn’t even know what I had done. (A problem that happens for me still) My friends would be so excited about an upcoming event they had all planned and I would either dread it or find an excuse to stay home. I had friends, don’t get me wrong….good friends…..but I knew in order to remain their friend, there were parts of me that I had to keep hidden.

One of my earliest memories of what would be a long string of confusing friendships was when I was 5. I spent the night with a friend and, like so many little ones, I got homesick. I told my friend that I wanted to go home….that I needed to call my mom. I have blocked alot of the details out, but what I do remember is her refusing me the use of her phone, beating me with a TV antenna and spraying room spray in my eyes. OBVIOUSLY, she didn’t want me leave. Not only did I stay that night, I went back….and back again….and back again. I’ve thought about that night so many times in the last 28 years and wondered why I was so pathetic. I never had an answer. Never. I didn’t just like her a little. I craved being near her. I “needed” her.

In middle school, I had to move schools mid-year. I had a problem with another friend that wouldn’t work itself out. It ended in typical preteen fashion. He said/she said mess and alot of alienated feelings on my end. The trouble was well known in my small, Christian school, and I felt like everybody was always against me. I felt eyes burning into me when I walked the halls. I felt the “you’re a trouble maker” looks everywhere I turned. My parents had always taught me to fix what was broken and give it my best shot….to apologize even when it wasn’t my fault to end it and be the better person. No matter what I tried, I couldn’t fix it. There was ,in my mind, a school wide boycott of me. My parents transferred me to another small, private school. I was elated….for a while. Inevitably, trouble followed. Within a few weeks, there were already problems. I was working hard to stay under the radar. I talked to whoever seemed nice and eventually gained confidence from finding a few friends, but I couldn’t seem to dodge issues with other people. All my moves were wrong.

In high school, I wasn’t part of a particular crowd. I found myself floating from group to group looking for acceptance that I only found in a couple of girls. By the time I hit 15, I had gotten a much bolder attitude about me and ditched some of my timid ways. I began experimenting with styles and felt like every day was a different costume party. I was a chameleon. Blending and meshing everywhere I went. I had a feeling of “fakeness” no matter what I tried….like I was never me, but always imitating someone else. Towards my Junior year, I began to not really care if I fit or not. I was fed up with trying. I couldn’t find the fit anyhow, and it seemed too hard to make it happen. I got in fights with teacher after teacher. I wasn’t a trouble maker, mind you, I was a good student…3rd in my class….but I only remember not arguing with one teacher out of every one that I had. I did it because I felt I was well within my rights to correct anything wrong….whether it be papers graded incorrectly or things said to me in tones I didn’t like. I couldn’t understand why *I* was always the one getting into trouble when THEY were the ones that were being unjust. There was a common theme in my life….Blow up and then apologize like mad afterwards. Eventually people got sick of hearing it and I was never so happy to leave an establishment in my life.

After graduation, I took a year off from school. I worked three jobs because I couldn’t stand just being home. I was always “on”. I couldn’t just do nothing. I couldn’t just relax. There was always a plan…always something I HAD to be doing. I decided it was time to hit the books, after that first year…dive into college…only I couldn’t pick just one thing that interested me. Everything sounded fascinating in way or another….I was scared to pick “just one”. Having a logical paramedic father, I decided nursing was a good choice. I was smart. I made the grades in high school. “No problem.”, I thought. I enjoyed the information in my Literature and Art History classes. I never made any friends though. I sat in the back….always came in right before class started, so that I wouldn’t have to speak to anyone…. Then came the chemistry class catastrophe. No matter how hard I listened, I couldn’t focus. No matter how much it was explained to me, I couldn’t get it. I was barely making it. The day the professor said, “Everyone follow me into the lab. Time to get hands on.”, I walked…..not into the lab, but out the door. I never went back. Not to Chemistry. Not to Art History. Not to Literature. I didn’t care about the money spent on the classes. I couldn’t do it anymore. One lab class that I never attended ruined my entire college experience. I was done. I felt like a complete failure. I began turning to drugs and alcohol to numb my low self esteem.

I eventually met a guy, and for the sake of his feelings and my children’s feelings, I will simply state that we got married, had 3 kids…and, like every other relationship/friendship I tried, it ended. Badly. Another failure under my belt. Depression overcame me. I had zero direction. I hated everything and everybody….especially myself. I gave into the depression. I gave into the self doubt. I drank my problems away. I lied to everybody about who I was, what I thought, and what I did. Noone wanted that truth. Nobody wanted to know that when I put my kids to bed at night, I curled up with any bottle that would make me numb. I didn’t want to know it. I didn’t want to do it. I couldn’t stand people, life or me. I didn’t have the strength or confidence to anything right. I was at the lowest point I had ever been.

After many horrible relationships and failed attemps at dating, I met this guy. I couldn’t explain the rush I got around him. It was unlike anything I had ever experienced. It scared me… and excited me at the same time. We began spending every waking minute together…and I fell in love. Hard. I ditched the bottles of booze. I had found the one person that gave me strength to be better. I found the one person I was scared to lose, apart from my kids. It was perfect. We were perfect. We had another child and got married. We were living my dream. I FINALLY had it together…….so why couldn’t I FEEL better. I had God. I had church. I had a great family. I had an incredible husband that supported my every breath. Still……I was alone in my mind. Still I was different. There were problems I couldn’t put my finger on. I was supposed to be happy, yet I couldn’t get over feeling like I was from another planet and had been dropped here by mistake. I continued to lose friends left and right. I couldn’t understand what was wrong with me. WHY did I feel so isolated?? WHY did people find it so easy to run from me? WHY was always saying and doing the wrong things to everyone?? Why was I attacking my husband and collapsing in tears every month or so?? I had no reason for it.

As a mom of four, who hates doctors and medication, I didn’t want to go. I had a son who was being tested for Apergers and I needed to devote all of my time and attention to him. I could put me on the back burner. I was a walking issue all my life, no sense in talking it out now, right? Just keep coping like always. Up. Down. Up. Down. I researched every minute I had about Aspergers. I wanted the best doctor for my son. I wanted to be well educated, so that I could mold him and help him grow into a successful young man that OWNED Aspergers. HE would be the poster boy. HE was gonna shine. I would make sure of it. I read and I read and I read until I passed out many nights. I began joining online support groups for other moms of Aspies. I had questions. They had answers. By accident, I joined a page that I thought was for moms of Aspies. I quickly found out, it was for the mom WITH Aspergers. Awesome. I wanted to see what they have to say too. It was in the next few days that things began to unfold for me. My heart raced as I read post after post of women describing ME…..MY life. My most intimate, dark secrets. I took a random internet test. I awaited the results calculating with as much anticipation and nervousness as all the times I had waited those daunting three minutes it takes for a pregnancy test to show that second pink line………”Calculating, calculating, calculating….POSITIVE.” I took another…and another…..and another. ONE of these #*$@ things has GOT to say I’m normal. Nope. All signs point to Asperland. I wasn’t the type to simply trust online tests I had found, so I started talking personally with an online psychologist friend and other Aspie moms. I had never been more sure of anything in my entire life. I had Aspergers. For a week, my mind raced and recalled events that suddenly made so much sense. I wasn’t mean….I wasn’t attacking anybody on purpose…nobody was really attacking me either. We were speaking different languages!

During the first week, I analyzed, obsessed (like us Aspies do), and relived so much of my life in my head. I laughed. I cried. I threw up. I got angry. I got determined. I got overwhelmed. I wanted answers…..and boy, did I get them.

At the end of this first week, I can tell you that I am tired, above all…but I am ready to be who I was meant to be. This is…..the first week of the rest of my life.