Autism And Empathy

    Studies show that those with Autism have trouble picking up on other people's emotions. It is said that Autistic individuals lack the tenderheartedness to notice people's wants and needs.With my son I find this to be true most times but not always. I have glimpsed moments of intense warmth in his soul. I have watched as he wept with unpretentious melancholy while listening to Dvorak's New World Symphony, where the music itself touched his heart and his eyes leaked warm tears. I have been with him as he sobbed with happiness when Snow White and her Prince rode off into the sunset on the white steed. I have comforted him post-tantrum, when the fury is gone and the sorrow sets in because he knows he has caused me pain. In these moments of emotion I ask him where he hurts, and he pats his chest where his heart is. I believe Tanner has the most purest of feelings.
    There are moments when I am sad as well. I remember being listless and distant one day. I sat at the computer, staring, murmuring for him to just leave me alone. But Tanner didn't leave me alone. He sat on the floor next to me and just watched. He occasionally touched me gently, a soft hug, the easy press of his mouth on my cheek. The boy examined my eyes and my face and he stayed until I smiled at him.
    I have found that Tanner can guage other people's emotional status just by looking at them. However his reactions are often misplaced. If dad is irritable and tense then Tanner counteracts by being naughty and needy. If sister is pushy and intolerant then Tanner becomes aggitated and violent. If mom is impatient and harried then Tanner becomes destructive and loud. Negative in US equals Negative in HIM.
    Perhaps those with Autism have a sense of empathy way beyond our understanding. All I know is that the boy knows my moods in the same way that he knows my eyes. If I side look at him with rage eyes he backs away. If I raise my voice but my eyes are smiling he laughs and if I have desperate wide eyes he takes advantage of me. When I have kind eyes he wants affection. When I wink he tries to wink as well.
I think he likes my happy eyes the best because when I'm happy, he's happy.
   

Non-Verbal Is A Language

    When I began researching and trying to understand the characteristics of Autism I continually came across the word "non-verbal". At the time I jumped to the conclusion that not only could my son never speak but that he could be silent as well. However, by the time he reached four years old he was making a lot of sound, he was loud. The boy's vocal chords produced a nice healthy squeal or a scream but his brain wouldn't let him form words, thus his vocalizations formed no language but they had meaning. Depending on the pitch and urgency of his sounds I have figured out what he was saying. I learned a foreign language. 

    Tanner's "voice" is something that people have to get used to. Not only is it a meaningless sound to most people it is also very loud. I take him to big family dinners often and the reactions of family members is always interesting. Last week after dinner the ten of us were sitting around talking and the boy was vocalizing loudly as well. My sister asked me what he was saying and I told her that his sound at that moment meant that he was relaxed and content. His body language let me know that I didn't have to watch him closely or worry about a sudden change in mood. So we all talked OVER Tanner's loud vocalizations and the house was merry with conversation. I happily observed that all kinds of sounds were accepted by everyone. At one point the little kids started mimicking Tanner's sound and soon we had a house full of racket. Some time during the evening Tanner's sound started to change in pitch and tone. His body language became a little restless and a little rigid. Instinctively we all noticed the slight change in atmosphere and I declared that the boy wanted to go home. I asked him if he was ready to go and he pointed to the door. Within five minutes we were in the car.

   By being in tune with Tanner's body language and his sound I avoided a potentially explosive screaming fit which would have put a damper on a lovely night. The less he is able to stew in his needs and wants the better. The boy will always give clues and indicators of his desires and if I pay attention to him I can almost always avoid a core meltdown. The language I have learned isn't taught in a class, it is honed by experience. And over the years I have noticed that all kinds of kids communicate in this way. Too often verbal expression doen't always convey true moods and feelings yet body language never lies. So try learning the language of Autism as a foreign language.

The Best Invention Ever

    I like electricity and indoor plumbing and automobiles and cell phones, but they are just conveniences. There is only one thing in this modern world that I cannot do without and that is...Disposable Diapers!! FYI everybody poops. MY poops smell like roses of course, and I can flush it all away. All Gone, No Problem. I know where to do it and I know how to get rid of it.
    Still, I am acutely aware of poop and all it's properties. In fact, I think about it (strategically) every day. Poop is an important part of my life and I have to be a proactive part of the process. But it is not MY process that I am talking about.... I have this autistic son who knows about poop and where it comes from but has no interest in depositing it where it ought to go. In other words, my cub is totally dependent on diapers. I have tried to sit him on the Potty. I have asked him where his poop and pee come from and he points to the right parts, then he gags and flushes a clean toilet. To be candid, the boy simply doesn't mind sitting in his own crap. It doesn't cause HIM discomfort, it just causes ME discomfort because I know I have to wipe a 15 year old's butt. And it is not like I am gathering up pebbles of poop or a nice clean log of poop either, I am dealing with mud. Think about the properties of mud for a moment. Think how thick and clingy mud might be. Think how slick and gooey and.....ok, I will stop.
    I judge Tanner's diapers upon how many wipes I use. A ten wipe diaper is standard...A twenty wipe diaper means means too much laxative... a two wipe diaper means not enough laxative. This is how I determine the boy's intestinal health. Unfortunately or fortunately, I am in control of his bowels. Since the boy doesn't have enough gut muscle tone he relies on the right combination of laxative to keep things moving. So if I want him to have a complete blow out when he is with his dad then I can make it so...Just Kidding!
    I am just saying that disposable diapers are a really nifty invention because they are extremely effective and I can just wrap the unmentionable item up in a plastic bag and throw it away. ***note: all you environmentalists are welcome to live in my shoes for one week...***. Anywho, I am grateful that the boy is an "all or nothing" kind of kid. I have never had to deal with potty training accidents because he simply is not trainable and never will be. I have accepted that and therefore there is no poop on my carpet and no poop in my car and no poop on the couch because the glorious diaper contains it all.

The Tantrum

    The Autistic Tantrum is a very strange and powerful animal. It is absolutely frightening when you see one for the first time and it continues to be disquieting for many years. Some people think the tantrum should be controlled, I think otherwise.
    Right now I am enjoying Tanner's post-tantrum status. Presently, he is like a lion after a kill; exhausted but satiated. One hour ago he was in full blown rage, for a reason that none of us quite understand. Over the years I have  identified many tantrum triggers: country music featuring women singers, being told "No", anyone reading out loud, going the "wrong" direction in the car, being ignored, having to leave, not leaving soon enough.... But thesedays his triggers are more puzzling. There IS NO rational reason. One moment the boy is content and the next moment something disturbs him. Once the beast inside my son is awakened all hell breaks loose. He finds a human target, the closest warm blooded person in the room, and then he just loses it....grabbing, scratching, pinching, pulling hair. He usually chooses his 14 year old sister as the object of his dissatisfaction. She knows just what to do and I love her for it! She defends herself with smart maneuvering, staying just beyond his grasp. He chases after her banging his head on every wall that they pass until they reach his bedroom.Then with an adroit shove she pushes him into his room and locks the door behind him. Thus ensues the cacophony of head banging, book throwing and screaming. Meanwhile she gets a wet washcloth and wipes the fresh blood from the hallway walls leading to his room where his scalp was opened up. She waits for calm and quiet, opens Tanner's door and finds him calmly turning pages of a book he has thrown. She tells him that he can come out whenever he wishes and leaves the door open. Soon the boy emerges from his den, sits on the couch and resumes his routine of watching his favorite scenes from The Simpsons. My daughter, swiftly returns to her routine of listening to music while doing homework or writing her "book". All is Well.
    I know it sounds horrific and terrifying. It is something we are used to. We have adapted. We have survived. We will continue and thrive. Understand that I didn't jump suddenly into the pool of Autism. I have been learning this occupation for 15 years now. The duties started small, progressed slowly and allowed me to change as my son changed. ***note: I change tactics when as he gets stronger***. In other words, what worked five years ago does not work now. Before, when he was small, I thought that I could control his angst by holding him down, preventing his self abuse. Later I wrestled with him, trying to pin him down so he couldn't hurt me or himself.  I thought I was helping him.
    As he got stronger I started to lose the battle. He was kicking my can. My son and I were in mortal combat, me trying to disable him so he couldn't shred my skin with his death claws, and him desperately needing to feel relief through self injury. My learning moment came when I lost control of the boy and became genuinely afraid for my safety. The more I tried to control him the more determined he became. After we were both sweaty, bruised and exhausted I vowed never to hold him back again. I would protect myself and let him do what his brain demanded of him. Sometimes the boy, mentally and physically needs to "feel" something very profound and for me to prevent these events is wrong.
   I provide a relatively safe environment where he can hurt himself to the point that his demons are satisfied but not to the point where he becomes critically injured. The result is a little scalp abrasion, a little blood and a satiated autistic boy. Fifteen years of experience has taught me that he NEEDS this!

The Art Of Constant Motion

    My house is immaculate almost all the time. Most people who know my autistic son ask me how I keep things in order. The simple answer is that everything that is important to me has a place, a very particular place where it can be found when I need it. When I do the dishes I need the scrub brush to be in the sink, when I need the scotch tape it had better be in the drawer. I find that the boy takes a fancy to ordinary items which are crucial to my function as a mom. He takes stuff, plays with it for 2 seconds and then goes on to other stuff. Before I know it the scissors are buried under the cushions, his toothbrush is in the fireplace, his DS card is in the heat vent, and my scrub brush is in the basement.So while Tanner is in constant motion with his ritualistic circling of the kitchen, I too, am gathering the debris and putting it back in it's usual place. I don't do this all day long though. I only do reconnaissance when I am missing something. In my attempt to find what is lost I happen to straighten the house and find all the things which I didn't know were missing. Sometimes I may find a piece of pizza under the couch while I am looking for a remote control or I notice a sipper cup in a drawer while I am looking for scissors. It all works out as long as I keep busy. What always surprises me though is to find jelly beans in my bed. I usually don't look there.

Sleep Through It

    I relish sleep more than any single thing in the universe. If given a choice of all the life sustaining things in the world I would still choose sleep over food, water and even oxygen because when I am not adequately rested I feel sick and miserable. So when I lie down it's not just for a quick napper snapper, I make it an event which supersedes all other events. And if I can't make time for a two to three hour nap in mid-day then I don't bother with a nap at all. This is possible in my world at the moment but was mostly just a fantasy when the kids were young.
     When the boy came along I willingly gave up uninterrupted sleep as a matter of course. I slept when he slept and I was frequently, but silently, sick with sleep deprivation but I knew it wouldn't last forever and I lived on hope. Except, my autistic son didn't sleep well at night after he turned three years old. He gradually made his way into the master bed and my husband gradually made his way to the couch.
     The fundamental problem which started the slow decline of my marriage was that the boy took control of the bedroom. My husband and I didn't enforce the same rules and therefore the kid won. When I worked late and got home at 1 a.m. Tanner was in my spot in the bed. I squeezed in just to have my husband retreat to the sofa. On the nights when I was home the pup was required to sleep in his own bed which meant I spent the whole night aborting his attempt to get into MY bed. Soon, due to inconsistencies in rule enforcement, I gave up.
    Tanner slept with me for a decade. He was restless, clingy, noisy and a general pain in the butt. I counted his awakenings as I counted the time on the clock. By the time it was four in the morning I would have been awakened four times by his rolling around, sitting up, crying out, or having his arm on my face. I didn't reach dream sleep for ten years. There were many attempts to get Tanner to sleep on his own but it wasn't until I bullet proofed the house and put a lock on my bedroom door that I began to sleep again. I made things safe, locked all doors, cupboards and faucets and then refused to open the bedroom door when he wanted in.There were nights that he pounded on my door for hours and camped out in the hallway. There were nights when he turned on all the sound and lights in the house. Yes it kept me up for a month but no longer. I gained the confidence that he was safe, put earplugs in, checked on him once nightly and then slept like a baby.
    To this day Tanner still bangs on my door a couple of times a night but I yell "GO AWAY" and he does. Sometimes I will get up and turn off the lights and the TV and find him asleep on the couch. Who cares? He is not a normal kid so I can't expect him to sleep in a normal bed. He has the run of the house at night, I sleep with earplugs and we see each other in the morning. It is an understanding which works for us.
    So, the moral of the story is to NEVER,EVER let your kid sleep in your marriage bed. Make things safe in the house, let him stay up all night yelling for attention but draw that red line which shall never be crossed. ....And buy many sets of effective earplugs and save your sanity.