Heavy

When I got my first job at Sears when I was 16, I was a mess. My lack of communication skills and inability to interpret any form of communication correctly left me mostly alone. Luckily stock replenishment didn't demand that much by the way of communication skills, nor contact. Every morning at 6 am I would walk into the dark, crisp early morning summer air and into the special side entrance to start my day. Until the store opened at 10 I would count, sort, stock, fill, and rearrange product in mostly sweet solitude. I had the occasional question from a coworker or "check-in" from my boss.

My boss was really something else....a short lady with a quick tongue and a sun-weathered face that didn't carry much expression. Her eyes always seemed beady, angry, and completely unavoidable with her dark hair cropped so short there was nowhere for them to hide. She would speak to me and I would avoid those eyes, letting my eyes rest above on her imp0ssible hair, which was generally styled in a precise disarray that resembled still cotton. What her face lacked in expression, her voice and attitude made up for tenfold, startling you back to her eyes when she spoke. She was loud and intimidating, with a crooked mouth and a quick temper. I hated her for constantly belittling and insulting me with her backhanded compliments and straight forward insults. I now realize I needed to know how others perceived me by my silence, lack of eye contact and nervous, monotone replies. Perhaps not in such an abusive manner, but I needed to know how others really saw me, as defensive and sometimes rude. It became a continuation of the isolation and pain that I felt during my school years, and I just wanted her to accept me like I wanted my classmates to accept me all those years. Ironically she never noticed that it was really a reflection of herself as I mimicked her social skills, reflecting her quick tongue and attitude back to her.

Lately I feel so weighed down. No amount of social coaching can help me transition from professional to personal relationships. I feel a personal relationship with so many people at work, but that is a road I should not go down. Aspies are not good at gray areas, and making friends with those you are associated with professionally is a huge gray area. I try to lessen the burden by finding and adding friends to facebook that I "network" with through church and work (which is essentially the same). I still find myself confused by the direction some of this effort is going. All I can do is ignore it, essentially. I hope my boss continues to support me because sometimes I feel like quitting. I don't want to quit, but I feel like quitting because the social demands of the parents are so much. That's completely my autism getting in the way. I will probably look weak for saying that, but I should say what I feel and not simply ignore it. I don't need to lie to myself or to anyone else. I also feel God gave me this opportunity for a reason, and for once I am listening to him and following the path he has mapped out for me.

my world is not right.

I haven't been writing much. There are lots of errant thoughts in my head, mostly riddled with bitterness and jealousy but nothing really of consequence. What I have come to realize is that I really wish I had a stronger family support system, comparable to those I have and see at church. I wish I had a stronger marriage. I think if more people in my life believed and loved God then perhaps it would be easier to be around them...and not feel so shunned or cast aside. As a result, I’ve been feeling inadequate lately. These negative thoughts need to just go on vacation.

I obtained employment, and a crisp piece of paper indicating I am learn-ed. I have to say I have a new respect for teachers. I love my job, but watching 13 kids is incredibly taxing.

Putting Them First

God gives me signs.

As eager as I am to get things rolling with my pending graduation (September 15), I think I need to slow down. I had planned to get another job to complement the aftercare position at my son's school (where I can spend time with both of my children instead of getting a "real" job and missing them the entire time) when Eli is gone in the mornings to preschool. Moving on with my goals, I've been relentlessly stalking the local library system for any job with 20 or less hours per week so that I could get my foot in the door. Once I graduate I don't want to waste my time sitting idle.

However, Friday I got called into Eli's summer camp at the YMCA to come get him because they couldn't calm him down. They said he kept saying "I want my mama".

Want or need? Who should judge if it is a want or a need, and if it is only a want is it that horrible to give him what he wants just in case it was what he really needed the whole time?

As it stands, plans for fall include 5 days a week in a preschool class for autistic children in Lansing, and that's a lot for a four-year old. He attended this class for four months of the school year this last year, most days. If he wants to stay home, I will let him-just like I did last Spring. But If he comes back with one bruise on him (as often happens with special needs children), he's out. I have zero tolerance for that bull#@$% and I get emotional when I read stories involving murder, rape and abuse of autistic children. I need the freedom to be able to support him how he needs to be supported and be vigilant to prevent any of this from happening.

Sometimes I feel like I'm not sure what to do, that I'm making too many excuses and not doing enough. But then I get that sign. And I know that it's God's will, and not my indecision or haste getting in the way.

The Scapegoat...

Parents get so angry about the disorder their children cannot help having and reacting to. Do you know what it feels like to be a teenager or adult with autism? I do. I’ll tell you all about it. I am autism. It is in my genetic code, in my blood. When someone is angry at autism for the inconvenience it places on their life, and it does, in fact, place a huge inconvenience, how do you think the person with autism feels? Well, you are angry at them. They are the problem. They feel guilty and lonely and sad. They are the living embodiment of a scapegoat. It isn’t vaccines, hormones, or the economic condition. It is in the DNA. You are angry at something they cannot help being. It’s like being angry at the color of your skin, or at a tic. And yes, I have tics. I kick and flail my arm. Haven’t seen it? I’m too busy hiding what inconveniences everyone else….busy wrapping my life around others to be convenient. Do you want autism to rule your child’s life? Stop forcing them to accommodate you. Accept them, let go of the anger, and do what you do with love. I’m not advocating for no treatment. Everyone needs therapy. I have flourished and with various therapies both structured and unstructured of my own rendering. Some people cannot even tell at times that I am autistic. But is that to appease them or myself I now wonder?

Excessive Force without the Trauma

The only way to effectively learn socialization skills is to jump in and just do it. I hate the feeling in my stomach, the gnawing knot of constant irritation which I feel each and every time I make eye contact, or even when I try to avoid it because someone else is gazing straight at me. But there are things I just need to accomplish and I cannot take any more time off to search for myself and avoiding what’s inevitable. I’m throwing myself out there. Starting now.

Today I sat down on a towel-like looking blanket spread across the grass which had alternating stripes of yellow, green, and fuchsia that captured my interest. I tried not to stare at it too much, not to analyze the pattern like I wanted to do. I made some eye contact as I sat next to the person who I have been steadily forcing conversation upon, and struggled to find things to say or acceptable things to look at other than eyes. Usually I rehearse things a little more…I decide where I will sit, who I will talk to, what I could say and what I can look at or distract myself with when I cannot remember any of these things. But the need to do this has decreased dramatically and things have been actually going quite well for me. I have chosen to socialize somewhat exclusively with other parents from my church. Those people that seem inherently kind, are good role models, and are constant in my life. They make me feel….good. And happy.

This Saturday is a “coming out” party of sorts for myself. I chose one of the less annoying types of direct selling (Lia Sophia jewelry) to take some of the focus off of me, but I have to say with every RSVP I get, I get more ridiculously excited that people actually like me. This is more than I could have ever hoped for…

Games

I spent much of my time around those who did not push me away just to learn from them. Older cousins, siblings, aunts, uncles, teachers were pretty accommodating….perhaps they never realized the differences in me. Honestly I preferred their companionship and couldn’t understand why I had to interact with those my age outside of the structure of the classroom. Some were friendly, encouraging, some thought of me as a project.

Those who did not push me away become my objects of observation. I had heroes and villains in my life, although I did not always know the difference until it was too late.

One such person was Hillary. Hillary was so very interesting. She was funny, outgoing, and had no problem making friends. However when she grew bored with her life she decided it was time to wreak havoc on others. I was probably third in line subject to her malice, but for some reason no one ever really talked about what she was done or what she was capable of, so she came to me without warning.

I was 11 years old when she convinced me to run away from home. I don’t even remember what she said to convince me to go with her, but looking back it was just another game she played to keep herself occupied. Autistics are in a peculiar position, not really being able to lie themselves, they cannot easily see another’s lies. This can make us very gullible. Furthermore, we can seem so mature with our adult-like language and analytical skills that parents tend to not worry about any possibility of irresponsibility. The lies she told and the manipulation she had over me had me wandering our small town at 3 in the morning on numerous occasions before this last incident…against all my better judgment because at that age you really don’t have any.

Closure brings itself to your door very rarely, but when that happens I think it's more for their benefit then yours and can be entirely selfish. Reiterating how much you've changed doesn't change the fact that what's done is done and it cannot be changed no matter who you are now. Thinking you can leave a mess in the wake of your tornado-like existence, ruining everything you touch and then saying sorry is not going to pick up the pieces. 15 years is a long, LONG time to contemplate all of what has happened and you cannot undo it at your will.

My Rock My God.

I miss a lot of things in my life due to this invisible condition I have, that most people like to pretend doesn’t exist. I missed my son’s kindergarten graduation today…and as I sat completely torn apart, unable to move to the door, I was growing more angry with myself by the minute. Writhing in pain of my inability to shake off fear and illness, I felt worthless. I cried a mountain of tears in frustration and mental anguish. How can I let myself freeze like this when I am so obviously needed? Do I not have an instinct that overrides all other conditions?

But I know how it is when I push myself too far. I would rather not let myself be consumed and turn into something I cannot control. I have worked so hard to cast off all that sensory irritation by preventative measures no one could even begin to imagine. I only want to be a good mother where I can use that soft voice and not feel the need to push them away when they become affectionate. When I quit listening to that optimistic voice in my head saying “You can do this!” my life got so much better. Their lives got so much better. It is better to recognize when I can’t do this. It is better on a myriad of levels.

Desperate, not wanting to let my son down twice in one day, I tried to push myself and find some sort of rock to hold onto so that I could do what was needed to be done. For autistics, we need for ourselves a support system. Mine is heavily dependent on my husband who can be the constant thing when everything else is changing and overwhelming. Luckily, I am no longer too proud to admit when I need help and my help arrived so that I could be the mother I wanted to be today. Proud and happy with tears in my eyes as my son danced across that stage like he was the only one there. And I was the only one watching. It was a moment I am so thankful for God to have given me the chance to make new friends that can help me be the mother I want to be and accept myself for who I am...even if I cannot sit alone in that audience.

(V for) Vendetta

I was 19 when I found the love of my life…and also when I had found for myself a mortal enemy bent on destroying me. It came from the most unlikely of places…

Six years later, an image burned in my brain as my to-be husband and I were at our rehearsal dinner, at the altar practicing our vows and I looked out to see her back to me. Her face turned to the side, fidgeting in the pew and looking anywhere but at the front of the church with a look of annoyance blatant and obvious. Even up to the day before, she didn’t want this to happen.

Fast forward to now. Why don’t I ever get invited to anything? Why are there plans for parties and showers and things that never reach my ears? Why is it I have never met his family other than the immediate grandmother, aunt or uncle? Apparently I sat right next to members of his family to the one thing I did get invited to and never had a clue. Are people too ashamed to acknowledge me?

I’ll admit I’m a loose cannon. You never know what to expect from me…neither do I really. Due to events beyond my control, I have been permanently placed on the defense…my way of trying to prevent the repetition of pain. The source of this pain is constant, throughout my entire life I have been ostracized and belittled, and until recently everyone claimed to be blind to it. My defensive nature I think made others assume I was partially to blame. I don’t know and I really don’t care anymore: there’s no reason to point fingers back in time. Can you blame Dr. Jekyll for Mr. Hyde?

I hit the reset button when I accepted the diagnosis…but so many others are slow to reset it themselves and get to know who I really am. That is, who I am when I’m not on the defense. I have found forgiveness from many people I never dreamed possible, many things for which I have found atonement. Yet there are so many others out there that do not care to atone and forgive. How hard this is to let go.

Making Friends

It's kinda like dating. A few folks I've met in my kids' school I've found on facebook and added as a means to speed up the "friending process". It seems like a sheepish, and easy way to find out if you have anything in common, or as a way of warning a potential friend about my social shortcomings so that they might be more patient with me. I give verbal warnings as well, but I feel like I'm constantly clutching my disability as an excuse and it might get on people's nerves. But it's all new to me too, especially the part of me claiming the label, thus adding even more to the awkwardness of it all.

Unfortunately, I feel for many the window of opportunity has passed for moving things to another level, like there is an expiration to escalating such friendships. If I don't move things to a new level after a few months, then I've lost the opportunity I think. I've lost a few opportunities this way because I get intimidated...unfortunately knowing me, it can take a year or more (usually more) to get to any kind of comfort zone to socialize outside of structured settings.

And then there's the disclaimers. Being friends will mean limited eye contact and conversation because of the inability to do both at the same time or process sensory stimuli properly...limited social abilities and seemingly rude and empathetic responses...quirks that will embarrass you....

It's too bad when I say off the wall stuff without having these disclaimers available for others. Nobody's perfect, right?

Hello my name is Aileen and I have Autism

It's true, I was poor growing up. It's true, if I had access to insurance of any kind I probably would have been diagnosed a lot sooner. Do I regret not being diagnosed? Sometimes. Am I angry about it? Not anymore. I think that's part of the denial phase of diagnosis. Sometimes I blame the lack of diagnosis for all the mistakes I've made and the people I've hurt, but mostly for pushing God away. I realize it would be selfish of me not to forgive myself when God easily forgives me and that makes things so much easier on me. I don't think He wants me to dwell on the negative, but look at the positive and make my lemonade.

There You Are

My father was 41 when I was born, exactly. He was older than most of the dads of the neighbor kids and the kids at school; I always attributed that to why we got along so well. Growing up, my father did construction work therefore I did not see him a lot in the warmer summer months when the work was abundant. I would monopolize his time on the rare occasions he was not working, running errands with him and just simply following him around like a puppy most days. I’m sure if he let me I would have went to work with him as well. He didn’t mind my constant presence. When I would hop in the truck beside him, I could see him smile off to the side, looking out the windshield of the rusty old ford as he waited for me to buckle. He never really looked directly at me even when talking (which was rare because he was a quiet man), and I enjoyed that. Eye contact is so intrusive. We would run his errands in perpetual silence, in our own worlds. Sometimes he would strain to make some inane conversation, but the little he did say to me I appreciated and gratefully reciprocated. How few words we would use to make a conversation was astounding. I knew how hard it was for him to communicate, because I knew how hard it was for me. Rainy days when there was no inside work for him were my favorite days. Sometimes he would be home on sunny days as well. I still did not have friends and I didn’t need them if I had him because it was far more fun to follow him than to follow the neighbor kids or my older sister (who was hardly around and almost always irritable). On the weekends, probably every other weekend or every third weekend when the grass was grown far too high to easily mow, he would get out in the hot son in his white hanes undershirt, jean shorts and his big straw hat that had a green sunvisor panel embedded in the front. He would also wear his gigantic sunglasses that fit over his normal glasses. He looked rather stupid. I followed him as he mowed too. I liked the deafening sound of the motor. I liked the routine in making a square as you mowed to the center. I would get rather annoyed when he would back up a few steps to bend the grass the other way (I did say it was way too long) and recut it. He would almost always step on my feet because I was moving behind him as if propelled by some unseen force.

On Sundays, rain or shine, summer or winter, we went to church. I really didn’t care what was going on there, I simply followed my father. My mother always stayed home and watched church on TV. She was perpetually sick and was content to stay home just the same as on the weekdays. I loved the routine, we would go to church, sometimes get donuts and always buy a Sunday paper from Dunkin Donuts, and then go home. I would go with my father to church every Sunday until the Sunday I heard the priest chastise alternative sexualities. I immediately quitted the Catholic church and never went back. I had never heard such hatred toward a group like that and I didn’t feel church was the appropriate place for hatred to breed or manifest. I didn’t care what anyone’s views were on the subject really and I attributed the same intolerance I witnessed there to every religion and eventually most everyone. So I pushed God away. This was not the God that I had learned to know and love. These organized religions are full of hate, and I felt they were listening to the wrong God. I needed to develop my own belief system instead of blindly following. Thus began my journey to class rebel Garber High school, class of 1998.

It took me a long time to find irrefutable evidence that I could not ignore or question. Even when I had my first son, this was the undeniable proof I needed but I was still too stubborn to listen. My second son felt different to me because this time I was married and having children was expected and encouraged. I was blending into society. Now I am 29 and realizing how much I have missed. How much love is there for me and how many things I can learn to let go of with His strength. You don’t want to accept my facebook friend request? That’s fine. I have other friends and I have Jesus. As my son says, Jesus is my best friend. My son, my six-year old son, taught me who Jesus is and taught me His love. All these years I was not listening, but I could hear. All these years I was not watching, but I could see. I just ignored it all.

Article

Well, it's out. You can read portions of it here. I can't believe it's on the front page.

Pop Can Nazi

My friends all think this is hilarious

Yesterday I went to return bottles that had been storing up in my trunk at the local grocery store. When I walked to the backroom where the bottle return machines are, I see a woman with a trash can in a cart blocking the machines because she decided she needs to use 3 out of 4 of them. I glare at her for at least 10 minutes and people are lining up behind me. She just keeps going about her business. I notice she had not been using the glass machine as much as the others, and I walk up to it print her coupon out for her and tell her I'm using it. I only had 5 bottles, she can deal with it. She cuts in front of me, declares she is not done and starts to use the glass machine. I tell her that it is rude to use all the machines and I'm pretty sure this is the point where she starts swearing at me so I get back in line and glare at the wall. I can still see peripherally she keeps looking back at me and I'm not sure if it's to provoke me but I just continue to glare at the wall because I had not wanted to rip someone's head off so badly before and I thought I just might do it. I knew any type of further acknowledgement was a bad idea because the anger and the words tip of my tongue were of the most offensive kind.

Throwing Rocks.

I tried very hard to be friends with the kids in my neighborhood, four of which were my cousins, and four or so others living within a hundred yards as well. I really only followed them around (mostly the girls), observing, mimicking, assimilating, trying to learn to be like them so that I could not only be their friends but to make friends at school as well. They weren't necessarily popular but as far as neighborhood cliques go, I very much found the breaks from solitude appealing and somewhat more comforting than those at school considering that half of the playmates were family. Family is an entirely different entity than the classmates who were unpredictable and mean. Not to say I wouldn't prefer the solitude, but there are only so many things you can do outside, by yourself, even with an unlimited imagination. My mother had always "encouraged" me to go outside. I think because I was pretty much an only child (my brother and sister are 13 years my elder) my constant pestering for her to be my playmate (adults were far more appealing than children to me) had something to do with this encouragement. Especially when the "soaps" were on I spent a lot of time outside.

So, I would go find my cousins, and follow them and the neighbors around to see what they were doing when I would grow bored of my alone play. Most of the time I was ignored, threatened and even attacked before I realized that these kids were not my friends and never would be. I had my bike tire slashed, kids would shoot beebees at my house, eventually I got the picture. The last time I recall playing with them was when the message was as clear as rocks flying at my face, I ran from their yard with blood and tears streaming down.

Rocks are now words. I don't see them coming, I don't comprehend what they are supposed to mean but they hit me none the less.

I am a slave to the autism. I feel on the outside of it all pretty much all the time. All kinds of jokes I don't get, things that most can read between the lines just slip through the cracks for me. I'm so sick of not having a clue what is going on around me or what is expected of me thanks to this. The thing that is the hardest is that I have no control over it and no way I can see of preventing it.

Sadness and Panic

Time just slips away so quickly. I constantly find myself brooding on whether or not I’m paying enough attention, giving enough hugs, or doing enough of what they wish me to do. What pains me so is when I hear my words reverberated back to me as I did just yesterday. “I don’t want to be touched right now,” Ian says. I say that. I try to be open and honest and tell my kids what autism is and what it means to me, but having it thrown back in my face like that-it’s an entirely different kind of pain. Now I feel inadequate and low. I can’t possibly ever do enough or be enough with this hanging like a raincloud over my head following me everywhere I go. Countless times Ian asks to see his friends, go somewhere, do something, and I just can’t. I know I have created this aversion in myself in response to my social shortcomings but I know how I am and I know how people see me by how they treat me. It’s torturous. I don’t fancy myself a hermit but I do avoid a lot of places where there is a lot of people, or noise, or sun. I don’t need to exacerbate my inability to function by adding more sensory issues. I just wish this was easier for me.

Insomnia

There are nights when I don't sleep very much and others where I make up for it. I can't pinpoint a pattern but I know I feel better when I add that pressure with a weighted blanket.

Hyposensitivity vs. Hypersensitivity

A lot of things go unnoticed, or undiagnosed because they do not seem to fit a cookie cutter definition of someone with autism. What we do not hear much about is the hyposensitive side of sensory integration disorders. Just as much as one person with autism can repel touching (that's me) there is another that craves it (that's my son). I had always wondered why the disparity until I started researching the descriptions of sensory processing disorder (which seems like a cut and dry view of autism). Check this out:

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

Interestingly for me, I really thought everyone had the same issues-that it was normal. I think the more I research the more I learn and I encourage anyone to do the same, on the spectrum or not.

Duality

When I was pregnant I felt as if my autism was in remission. I wasn't myself. It was like I was on the outside looking in and someone else was living my life for the duration of the pregnancy and the entire year following childbirth.

Could that indicate that there is some sort of cure? Could an abundance of hormones hit a reset button and make your sensory integration shortcomings disappear? I don't know, but this phenomenon is an oddity of sorts. I had no tactile issues during these times until suddenly I did about a year postpartum with my second child. My hormones had nullified my aversions, which I guess was a good thing since babies crave tactile stimulation. But so do children, and I knew how much it hurt them and how much it still does when I cannot provide that.

I'm not suggesting self-induced hormone inbalances to treat autism, because I did not enjoy either of my pregnancies and that postpartum period. Maybe it's the control freak in me, but the feeling of waking up and realizing five years had passed and you now have these two strange creatures that are apparently your responsibility is scary and I don't want to live through that again. I would rather remember my days and not feel as if someone else is pushing my buttons and making my decisions for me.