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Monday, September 30, 2013

If You Really Knew Me... -Guest Post


  • Editorial Note:
    This essay started out as a FB Status by my friend Kathleen. It resonated deeply with me, because she is me. We are the same. Our lives are a parallel universe, that most people don't know anything about. For those of you who don't live it ...this is the world of an Aspergers Mom. By getting to know her ...you will be getting to know our universe.
    By Kathleen Johnson
    I wish for one day you could be me. I wish for one day you could listen to the barrage of concerns I listen to without the ability to alleviate them...from the way the schools’ cafeteria is cheating him out of 33.5 cents every time he buys a frozen yogurt, because it does not accurately reflect the amount they are reporting to sell him. On to the grades that are entered incorrectly for him by one particular teacher, who is certainly out to keep in high school forever.
    I wish for one day you could feel the anxiety that begins to boil up in me as I listen to complaint after complaint of how the world is against him. One very tiny thing to you or me, is the end of the world to him. Like the way people look at him when they walk by. To the space he has to share which is “not his fault!”  Everything is "not his fault!"
    A timer set him off this morning. The timer (he fought me on) -that he swore up and down he didn’t want in his bathroom. “Timing showers is ‘stupid’” This same timer is why he is pissed off they took out of his bathroom for “no reason.” They had to walk by their shower timer to get his. It's a conspiracy of sorts. Everyone is always conspiring against him. Never mind that he hasn’t noticed the timer has been out of his bathroom for a week. He noticed it now, and that was enough to set his day up for opposition.
    I wish for one day you could experience what it is like to have the concerns about his future as I do. When something so small as a bathroom timer can upset his entire day, how is he going to react when they cut him off on the freeway? Or when a co-worker blames him for speaking inappropriately and the boss confronts him?  
    I worry about how he will live on his own. Who will explain things to him such as the rent is due at the BEGINNING of the month, and not the end, so when he doesn’t understand, he doesn’t automatically assume the landlord is out to take advantage of him. The police or judges certainly aren’t going to take his “disability” under consideration when there's a misunderstanding. His own father can’t do that.
    His lack of understanding is a real problem for him. He finds it difficult to follow simple rules in our home. They escape him. He isn’t present in the moment enough to follow them. When called on his “inability” to follow the rules, he can’t explain himself sufficiently or quick enough. I get his frustration. I GET IT!  
    Have you ever considered that the very thing that drives you or I crazy about him is what creates his frustration and anger?
    Consider for a moment that you are driving fast to rush a lady in labor to the hospital. You are pulled over by the authorities for violating the speed limit. You are so frazzled, that you can’t find your words to tell the officer that there is a woman in your car in labor, but you KNOW there is a woman about to give birth in your backseat. The windows are tinted and she isn’t making any noise. You try to roll down your window to “show” the officer the situation since you can’t articulate it. The officer takes it as you trying to reach for a weapon. Immediately, he gets aggressive with you and pulls you out of the car on the drivers side. In an instant you are face planted to the side of your car, getting frisked and handcuffed. 

    Meanwhile, you KNOW this woman is in the back of the car about to spit an 8lb baby out of her vagina and bloody up your new car. You start to struggle and scream because if only they let you go, you could show the officer. However, he is telling you to be quiet. His perception of the situation is his reality and you are powerless to change that! His partner begins to search the vehicle and he sees the pregnant woman in distress. All of a sudden the officer communicates this to his partner. The officer now knows what you know. He releases you and actually even escorts you to the hospital. All the while you may appreciate the understanding, but your adrenaline is running. You're PISSED OFF because you were trying to tell him that in first place. You just where just too upset in the moment, to be able to articulate it. The words wouldn’t come to you. You thought everyone else should know what was in your head. 
    THIS is what it is like for him every single day! This is what communication looks like in my home. Always a misunderstanding -an expectation that he doesn't meet. He should do better despite his ability level.  
    If you walked in his shoes, would you blame yourself for being so emotionally charged to not be able to articulate the specific circumstances regarding the woman in labor? Yet we expect him, the kid who lives in THIS FRAZZLED state of being to be able to do articulate his thoughts and feelings appropriately, instantaneously...everyday! 
    HE ISN’T TYPICAL! Stop comparing him to other kids his age. Stop comparing him to other kids younger than him. Stop comparing him to yourself! Honor the fact that our child is different. Don’t tell them to see himself as the equal to his peers, or siblings. He isn’t.
     
    Every individual should be treated based on what THEY need.  
    My child has Aspergers. In his mind, your typical child is at an unfair advantage when he deals with him. His disability is invisible to the world, but that doesn't mean that it doesn't exist. It is REAL. His disability is real. I am sick and tired of the perception that I make excuses for him. I am trying to educate ...not excuse. Autism is the invisible reason for many of his behaviors.  
    Imagine ...I have to explain this and educate his own father almost daily! By the time I get to explaining this over and over again, those of you in the outside world, may see my frustration. I may not be all goodness and light when I am exasperated.
    Teachers, friends and relatives -I am sorry he treats you inappropriately, doesn’t listen to you, or give you the respect as an adult that you think that he should. It makes me sad that I have not been able to install that in him as a parent. But I get it ...I get where he is coming from. It is difficult to get him to trust us, his own parents enough to listen to us. 
    I mean, think about this. The people who brought him into this world weren’t given an instruction manual for him. We are learning as we go. We made mistakes while raising him especially, before we knew he had autism. There were MANY days when we were that police officer who wasn't hearing what he was trying to tell us. That miscommunication instilled a mistrust in him. His self talk became -if the people who are supposed to love me and protect me can’t understand me, I can’t trust that anyone will. I need to depend on myself. So he built up a barricade -a fire wall.  
    He may never trust enough to listen to what you say. Don’t make that mean he is disrespectful or that his behavior is willful. He will likely bark at you, that comes from the years of being barked at by others. It's instinctive, fight or flight behavior. His frustration comes out as anger. He feels like he is constantly treated unfairly by the world. So, yes, he may blurt things out that make you cringe, give you a knee jerk reaction, or make you want to slap the shit out of him. I understand. I get that too. But please understand he has no filter, no political correctness and at this point, after everything he has been through, he is completely desensitized to judgment by you or anyone else. He is just trying to survive.  
    When he thinks something, he says it. He isn’t being mean or rude. He just isn’t concerned nor does he even realize that other people actually have self talk (filters) before they say something aloud. He thinks it, speaks it and then suffers the ramification of it. No. He doesn’t connect that behavior with anything he needs to adjust, so therefore, he may never learn from the consequences he experiences.  
    Believe you me, I wish I could have had a greater parental impact on him. I have been beating my head against this brick wall for 15 years.
    IF you really knew me ...you would understand my moodiness, my sadness, my frustration and my sorrow. You would understand my need to be “DONE” raising children, without thinking I am a cold hearted woman. These 15+ years have been like 45 years raising typical kid.  
    You would understand my need to be alone. The truth is, I am never alone because even when I manage to do something for me, I am only a text or phone call away and believe you me, I am his phone a friend and he uses that option many times a day.  
    You would understand my selfishness, as the only way I have found to survive. You would understand the value I place in solitude, my home and inner peace. This is what keeps me from blowing my brains out or taking a hand full of pills.
    If you really knew me ...you would know that my inner struggle is created by the contrast of my life on the outside, versus how I feel inside. It is a minor miracle that I haven’t rolled over and played dead or given up and settled into a fetal position in the corner somewhere.
    Instead, I press on. I set goals. I work on MY dreams to keep myself from being devastated about his life. The fact that I haven’t stopped trying to live a consciously connected life is extraordinary. I am special. I know this.
    It is no small feat that against the carb and junk cravings he has, I still insist on feeding all of my children healthy, quality food. There are some days when the smack down I receive about food sends me to eat or drink away my own stress. I may give in at times, but I never GIVE UP.  I hold to my stance 90% of the time. Yes, I give in. So what? That doesn’t make me hypocritical. It makes me human. The daily fight over food makes me crazy at best.
    If you really knew me ...you would understand how much energy it takes to be me on a daily basis. You would understand my need to “check out”. My heart is still here, my intentions are still pure, but I can only give what I can give. I can’t apologize to you or anyone else if how I give isn’t the way you want to receive. I love with all my heart, but sometimes I need to love from afar.  
    If you really knew my life, you would see the extraordinary feat it is to remain positive and maintain inner Zen amidst the outer storm. Then and only then, would you understand why I control my world, my home, and my environment in order to achieve that.
    Then and only then would you truly get it.
    Kathleen is a married (22 years), mother of three handsome, amazingly unique young men with different abilities. They are ages, 13, 15, and a 20 year-old, who just moved out on his own. Her boys have an alphabet soup of diagnoses, one of them, with Aspergers. She is an inspiration to me and many of us in the 'Confessions' community.