The Hazards of Holidays

     Big holiday gatherings are an absolute nightmare for Autistic kids. My son can really put a damper on things if allowed to escalate into his evil tyrant mode. Still, he is an important and integral part of our family and thus far has been involved in the joyous events of our lives. Over the years I have learned that Tanner needs a little pharmalogical help to take the edge off his anxious and violent behaviors. But no matter how much I beg him to sit calmly and quietly, no matter how much I want him to politely join us for dinner, no matter how much I wish he would keep his hands to himself, he ends up being who he is. Tanner is a phenomenon. We all know him well. Family members have grown to expect certain occurances, such as: When food is involved we all know that we have to guard our plate. The boy is notorious for sneaking up from behind and putting his finger in your pot roast. Also people have learned to never leave a drink unattended because Tanner consideres all drinks to be his. Once he gets your drink you never want it back, aka. backwash. Also the family has gotten used to the fact that there will be absolutely no after dinner football on the TV unless you want a smack-down from Tanner the TV tyrant. My brothers soon learn that they are missing some skin if they try to wrestle the remote from the boy. Small-talk becomes Loud-talk as the family raise their voices to be heard over Tanner's vocalizations. All the while I am highly aware of his body language so that I can avert a sudden aggression. This is our reality and for the most part everybody pitches in to help. A little later, after dinner and when the little kids go off to play, I give the boy a second dose of  "don't be psychotic" drugs and he starts to shut it all down. Calmly he will doze on my lap and then we are free to have boring, mostly civilized adult conversation.
     So what I have learned is that typical family chaos, noise and activity brings out the worse in Tanner and that medication isn't really effective. But when dinner and dishes are done and people are just sitting around then, and only then, is the boy calm enough to let the drugs work. In essence, everyone wants to "experience" Tanner for a short while but we are relieved when he goes off into dreamland.

Risky Behavior

     Some teenagers are big risk takers. They tend to engage in dangerous activities  like longboarding, fast driving and ladder climbing. These kids aren't afraid of accidents. I have an Autistic son who likes to live on the edge as well. Even though he is constantly supervised he seems to get into a lot of trouble. The other day I started a small fire in the fireplace for warmth and comfort as the snow piled up outside. The boy is a fire lover as well. Momentarily, I walked away to fold some laundry and when I returned he had piled every piece of firewood we had into the fireplace. My little pyromaniac watched as the fire grew and when there was nothing else to feed it he threw in a kitchen towel. As I watched to see what the fire bug would do next he looked eagerly at the throw pillows. There is no limit to what the boy will throw into a fire, even his sipper cup.
     Water also draws the boy under it's spell. Swimming pools are Tanner's nirvana. Although he can't swim he tends to inch his way deeper and deeper...the water creeps over his shoulders, then around his chin, then washes over his mouth and this is when his eyes go wide because he realizes he can't breath anymore.I watch him carefully to see if he can solve his own problems. Over the years he becomes more cautious.
     Another danger, or embarrassment, is when the cub decides he wants to take off his clothes. The other day after getting off the school bus the little streaker stripped off his coat, then his shirt and had his pants way below the butt crack before he got to the front door. It was 17 degrees outside. I got a good natured honk from the bus driver and quickly ushered my exhibitionist sixteen year old into the house. In the driveway was a scattering of clothing tossed aside as if I ran a nudest colony. The next morning there were still footprints of barefeet in the snow.
    Tanner also runs with scissors, walks on broken glass, opens the washer when it's on spin cycle, turns up music really loud and runs away from home. I threaten him time and time again that I will haul him off to Juvie but he just laughs at me.

A Few Of My Favorite Things

     I will be shallow here and make it known what is really important to me. #1  becoming warm when I am cold, ie. (hot bath, warm blanket, fireplace, soup)...#2 becoming cool when I am hot, ie. (cold drink, air conditining, cool sheets, snow cone)...#3 scratching an itch ie. (preferably a human scratcher)....#4 a good book, ie.(wow! that is sooo true and penned sooo beautifully)....#5 a clean car, ie (this car looks so good on me!). If I am comfortable then I am more apt to be grateful. So when these initial needs are met then I can go on and notice the other great stuff in my life.
    The single thing which has saved me from self pity and martyrdom is the gift of having a paying job. I have a skill other than being the awesome mom of an Autistic son. My occupation has empowered me enough that I have never become resentful towards the constant demands and sacrifices I make caring for my cub. Working away from home and being at the top of my game has instilled confidence and importance in who I am. And as a bonus, dad is a very involved and integral part of the family. Together, we have it covered.
    The other thing which has saved me from heartache and despair is that I have a son who is truly clueless. Yes, I am grateful that my boy is on the severe end of the Autistic Spectrum. He will be a perpetual, carefree two year old for the rest of his life, his needs will be met and he will never have the awareness that he is different. When I look into his eyes there will be an innocent child unconcerned about his lost potential. This boy will never know cruelty or disappointment or shame. For this I am grateful.
    Another thing which has saved me from feeling hopeless and overwhelmed is my teenage daughter. She was born into quite a pickle. From her earliest days she has endured the craziness of her brother. But the thing is, she never let him win. She never lost herself. I guess my daughter could have become a compulsive caretaker, hingeing on Tanner's every need, or she could have become bitter, hating her brother and her life as his sibling. Instead, she is a typical sister, sometimes a bully, other times a helper. But she is always a protector and I rely on her greatly.
    There are so many other things which make my life so full. Alot of these things hurt. The things which hurt the most are those which end up being the most beneficial for the growth of my soul. When I feel like I am doing difficult things I feel more fullfilled. Still, I would be lying if I gave the impression that my life is just one Zen moment after another. I experience the whole gamut of emotions in a single day. Some days I don't even want to wake up, some days I am so full of resentment that I just want to disappear. Most days I am content. The best days are when I am filled with a love so intense that I can't help but squeeze the kids until they can't stand it anymore. I am grateful for the best days the most.

What Do You Do For Yourself?

     Sometimes it seems as if there is never a spare moment in day to day life. I mean there are messes to clean up, meals to make, laundry to fold and all the other stuff that comes with being a responsible and conscientious mother. Having an Autistic child just quadruples the effort to maintain a stable environment for the family as a whole. And as much as I like to stay busy there are other aspects of my life that I really need to keep track of. For instance, it is important for me to know how I am feeling about my situation. It is important that I don't become an autometron, just going through the motions of a difficult  existence.
    There was a decade of my life when I did everything right. I pretended that I could make my family normal by becoming extra involved in school volunteerism and by cooking time consuming meals and by not wearing tank tops in public. I even attended a local church in hopes of becoming part of my community. Still, I believe, at this time, I was never so unhappy. By becoming involved in "normal" activities I had the hopes of fitting into the perfect mold of contentment like everyone around me. But really nothing changed except for added dissapointment on top of living with a severe Autistic son. Much later I discovered why I was an outsider and it wasn't because of Tanner.
    I wasn't being true to myself. I was taking my life to seriously. I wasn't enjoying the disaster which was my life. First of all, I had a big talk with myself and stopped all that "appearances" crap. Next, I started watching my crazy boy in a whole new way. I found that his "abby-normal" brain makes him a very interesting and funny person. I let go of my control, I stopped telling him no, I stopped covering his mouth when he got to loud. I just let it roll. When he threw his food, broke something, put his head through a wall, I stopped reacting. Afterall, these are just material things which can be fixed at leisure.
   And Most Importantly....the boy WILL fall asleep by 8:00 pm which leaves me MY TIME to do what I please. This part of the evening is crucial to my well being. I plan my alone time like I plan a vacation ie. it does not go wrong. First I make sure the children are put away and can't bother me, then I lock my bedroom door.
    What happens next is purely magical. I put on soft yoga music, light about twenty candles, draw a hot bath with lavender scented bubbles and soak until I am ready. Then I talk to myself. I ask about my day and how I am feeling and I congratulate myself for making it through. Then I think about all the good things in life which make me smile. Then I think about a single thing which I want to do better next time. Finally I try to blank out all thought and I ask with my thoughts "What is your will?", "Please help me!". I try to communicate with the presence I feel, the presence I talk to when I use my inner voice. Next I feel peaceful..... This is my indulgence, the thing I do for myself. This is what saves me from myself.

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.