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.

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.

More About Eating

    I accept that my autistic son eats unusual things. I accept that I let him eat stuff that is not recommended for human consumption. And I am delighted that he never has tummy troubles. But I must say that he eats edible food items as well. In fact, he eats anything I put in front of him except broccoli and green beans ( he throws those particular veggies at the ceiling). As I am making dinner he will often scout out what is in the sink, like the butts of tomatoes or onions, soggy bread crusts, anything I have dumped into the garbage disposal in an attempt to dispose of it. He feasts on stuff I want to get rid of. The boy has no shame.
    Finally when dinner is ready ,an acceptable dinner for typical people, Tanner eats as if he has been through the desert with a horse with no name. And since using a fork only slows him down he scoops his food with his utensil of choice, his hand. The boy finds it easier to dump his dinner onto the flat surface of the counter and then shovel it into his face like a front loader pushing a load into an endless pit. He can eat a whole meal in five minutes. So as the rest of the family is barely beginning our evening feast the boy hands me his empty plate, meaning "more food".
    So really, supper is.....the clean-up is monumental...small talk is impossible...it is just not a time to relax and discuss how our day went. Instead I wait for that golden moment after dinner, when everything is washed and put away, the sleepy meds have been given and Tanner is drowsy. Then I sit on the couch with a blanky and scratch Tanner's back until he is unconscious. Only then does the "how was your day" conversation take place.

Eat It (As Long As It's Not Toxic)

    When my autistic boy was a but a pup he didn't care about eating. He was a skinny little kid, like an al dente noodle, thin and floppy. But then at four years old he started eating kooky things. I remember him sitting in a pile of sand and putting a pinch of it into his mouth. The sand crunched in his teeth as he chewed. He didn't spit it out but tasted it as if it were an appetizer, cautious at first and then surprised at it's goodness. I realize that sand isn't part of a food group but it seems to be ok in moderation, just a little here and there. Every once in a while the boy feels the need to eat a bite of dirt as well. Last year while in the yard he picked up a plum sized dirt clod and took a good honest bite out of it, twice. Then he went about his day. In the early days school teachers learned not to give him crayons, chalk, candles or pencil erasers because he made a meal out of them. These items weren't just chewed on, he actually ate them like a rabbit eating a carrot. And no tummy trouble either, just colorful in his diaper.
    Any kind of water will find it's way into Tanner's mouth as well; lake water, irrigation water, storm water, bath water, old water, pool water. He likes water. At first I was worried about the cleanliness of what he was drinking. But he NEVER got sick, and still never does. Of course I know it is gross to drink strange water, I am careful when I drink stuff, heck, I won't even drink out of the same cup as another person. Still I gave up trying to protect him from himself, he wouldn't have any fun if I kept him in sanitary conditions. If his gut isn't complaining then I suppose it's all good.
    All I know is that all the candles in the house have bite marks and chunks are missing along their edges, as well as the Nerf footballs, and anything with a rubber handle. Be assured that he also receives healthy snacks as well and usually a fine dinner of meat and potatoes. For desert, if he's been a good boy, he might get a tangerine crayon.
 

Lock Down

    My home is such a beautiful prison. Every door is locked, every cupboard secure, every water faucet  inaccessible. The convict here is a sneaky little devil and requires strict observation which realistically I can't give him. For some reason my autistic jailbird tends to open anything which is not locked for no apparent reason. He will open a cupboard, take out a cereal box, drop it on the floor and go onto the fridge, open the doors and leave. Next the water faucets go on because water comes out of them. Then the drawers are pulled open and the tape measures are taken out, but only the tape measures. Maybe he'll try the laundry room because it is fun to throw folded towels around and pull out wrapping paper. It is super sneaky to go into the jailor's bathroom and eat her candles. My prisoner is a lifer in his pretty prison and doesn't see the need for good behavior. See, if I don't keep a handle on the situation then I am apt to have a lot of cleaning up to do. Therefore I lock everything. Unless I forget which is often.
    As the warden sometimes I find it infuriating to spend the day locking and unlocking things so I just lock myself outside and take a peek at my convict through the window from time to time just to make sure he is secure. He usually is. Really the best thing for Tanner is a TV and a remote control and alone time. Then he forgets his ritualistic cycle of opening stuff and enjoys what is in his own brain box.

Elopement

      Studies show that kids with autism have a high rate of elopement. Huh... so does that mean that my boy has a good chance of running away to Las Vegas to get married without my knowledge? Golly wouldn't that be something!  "Elopement" is the stupidest word ever used in the world of autism, almost as bad as "Bored Housewife". Every time I see that word I cringe and roll my eyes, I hate that word!
    It's not so funny when elopement "happens" though. If I ever say that Tanner eloped last night I don't mean that he secretly ran off with a gal, I mean that he escaped home without me knowing. One minute he is here and the next minute he is down the street. Very distressing indeed!
    My little sneaky one started wandering when he was five. He slowly got away by crawling over dirt and rocks and asphalt to get to a mud puddle at the end of the cul-de-sac. Even turning my back on him for ten minutes could result in his escape and many possible dangers. Later he grew bolder and actually opened the front door and hobbled to a neighbors yard where he started drinking out of their birdbath. This was when our neighborhood was new and this house in particular was, and is, not very "open". I got my first and only "keep a better watch on your kid" lecture from the lesbians next door. Thanks for the tolerance gals... whatever.
    As soon as it became clear that "der sneak-meyster" was on the look-out to escape and see other people's TV sets , we drilled holes in all of our outside doors and put up hotel chains to keep them secure. This worked very well were it not for human error. If someone in the household forgot to chain a door then the boy was on the move. Except we wouldn't know he was gone until he was brought back by a well-meaning and smiling neighbor. Yes, after a couple of years, a few particular neighbors were used to the boy walking into their unlocked houses and commandeering their couch and TV. Sometimes they would find him sitting on their backyard trampoline or in their vehicle or in their garage. Oh the stories!
    Anyhoo, total and complete diligence every hour of every day tended to be impossible when the wanderer is smarter than was credited. When it was learned that Tanner could lift the chains off the doors, then we used ribbons instead of the chains because the boy couldn't undo complicated knots. Again we encountered the almost debilitating problem of tying and untying knots all day. Someone, some time wouldn't tie a knot (just for a minute) and off Tanner would go on his "walkabouts". 
    The problem is that we don't know what the cub can do until he already does it. So great appreciation and relief goes out to all my neighbors who have been such good sports over the years. Without these wonderful and understanding people all about me I would have checked myself into the loony bin long ago. I hope that Tanner and I are a source of amusement and good-hearted talk at their dinner tables.
    On a serious note though, there was one terrifying incident that happened one late, late night... I was driving home from work at 1:30 a.m.as I usually do. My heart jumped into my throat when I saw that the garage door was wide open, lights were on, and I knew that Tanner was long gone. In great hopes I searched the house, he was nowhere. I got on my daughter's bike and immediately, frantically pedaled to the neighbor's pond. My weak flashlight shone dimly in the pitch black and I tentatively called out his name, desperately praying that my light didn't fall on his face down body in the water. I was sick with fear. After a thorough search of the pond I continued down the road to the marshes where shallow water ran through tall weeds. While wading through the marsh out of my mind in desperation, car lights shown on me and a neighbor embraced me saying "we've got Tanner, he's on his way home"!
    While I was searching for him, my son had wandered farther than he ever had. He rang the doorbell of a house in the neighborhood, walked right in, flipped on their lights and sat on their couch. These folks didn't know who this strange boy was but they knew he was "special". They took a picture of this boy and sent it to other neighbors who recognized him, then they found me wallowing in the marshes. I was reunited with the love of my life as he obliviously walked down the sidewalk in someone else's shoes and someone else's coat.
Have I said how much I love my neighbors? I can never say it enough.

Ask For Help Sooner Rather Than Later

    I am at this very moment watching my autistic son chew the foam off his Nerf protective case for his DS GameBoy thingy and patiently waiting for his nighty-night drugs to kick in. It is very loud right now because he is listening to classical music on the tuner, Christmas music on i-tunes, watching his plane crash on the Wii, jumping up and down and vocalizing happily because he is so happy to be alive! But I am peaceful. I am relaxed and comfortable because Tanner went to his Day Program today for six hours. If not for this "government handout" I would be crazy by now.
    For the first twelve years I did it without help. In the very beginning, the first four years, life was manageable. I had a developmentally delayed son and soon a perfectly typical daughter which gave people the impression that I had twins. Both children took all my spare time but I honestly loved it. I had two cubs to feed, bathe, entertain and keep safe plus I had a part-time evening job and a husband who took up the slack. Being a mother is a joy and at that time I was proud that I was up to the challenge. Then Tanner's behavior started to change from being passive to being aggressive. He was pinching and biting and scratching and head banging and self destructing. He was restless and vocal and inconsolable.
    From age four to eight I was in the dark about how to live my life. My only outlet was going to my job, an escape from a crazy child and a despondent husband. Somehow during these dark days, a prelude to blacker days, I was pointed in the direction of a clinic dedicated to neuro-behavioral issues. This is when psychotropic medications entered our lives...so many ineffective medications. At least there was a modicum of help in the sea of despair. We tried to get the kid's behavior under control through pharmacological help. A decision I would never regret even though I would encounter resistance from dad for decades. The clinic also referred us to various programs which could help alleviate some of the stress and responsibility of caring for a special needs child. At the time my husband was absolutely mortified to be the recipient of any "assistance", so I spent the next four years hanging by a thread. These four years were unspeakably difficult and I was unspeakably silent about my travails.
    Gratefully I sent the boy off to school where the special ed. department did their best to integrate him into a system that really didn't want him. Daily I worried about his impact on others; would he hurt someone, would he disrupt to much, did the teachers care for him? Then when he got home I worried about the state of our home; would his sibling be damaged, would the marriage survive, would he be safe as I slept. I needed help regardless of my husbands denial.
    Since my desperation was allowed to fester for years I really couldn't wait much longer for relief, so I wrote a letter to the DSPD coordinator. I honestly articulated my desperation. There were three key issues which got me immediate services. #1) I fear for the safety of my daughter ( the boy routinely attacked her) #2)  I fear for the safety of my son ( I might hurt him) #3)I fear for the security of my marriage ( never mind). All were true. I swallowed my pride and admitted that I had lost control of the basics of survival. My family was in danger.
    The point is that I didn't have let things get so bad. I should have had the sense to accept help when it was offered. I should have trusted my instincts and not have been controlled by my husband's pride. Now I can say that my boy is happily involved in an educational setting dedicated to kids with disabilities. He is overwhelmed with joy when he goes to a "government sponsored" after school program three times a week. And I am happy to go to a movie on a night that I don't work thanks to Respite Care (another government funded program for caretakers of special needs kids). All in all, this help has never been so deserved and so appreciated and I have never been so "ok".
DO THESE THINGS NOW:
1)  love your autistic kid so much that you accept help from the government despite your belief system. ie. respite, community outreach, after school, summer programs etc. ALSO don't be afraid of medication ( if he sleeps due to meds then you sleep too, win-win)
2) love your unaffected kid so much that you dedicate a special day every week just for her (by using respite care)
3) love your husband so much that you don't allow him to make uninformed decisions which can ultimately ruin your relationship due to unnecessary hardship.
4) Your autistic kid can be an absolute joy to you if you give up your pride and seek to "spread this joy" to other qualified individuals. By the way, you are not the only one that will love your quirky, funny, unique kid.

NEXT UP: Elopement...(I don't think this means what you think it means)

If Only...

    I know this one guy who lived with regret for many years. He had one son and that son had a bad case of autism. This father had grown up in a peaceful and rational home where his family members were productive and content, where each member thrived and had a talent to share. In his world, family members were above average in intellect and ability. And nobody had problems. So when this guy discovered that his progeny didn't fit the mold that he was accustomed to he didn't know what to do. He wanted to be a good father and insisted that his challenged son be familiar with all that is good in the world. This father wanted his son to enjoy the things that he enjoyed like travel, sports and family connection. He felt a penetrating guilt and disappointment when the boy didn't react like a typical kid. Sometimes this guy tried to hard to include his son in all things and mostly there was sorrow and bewilderment when these events went awry.It took a long time for him to realize his son would never go golfing or play a game of baseball or drive a car. It was painful for this man to look at the abilities of typical kids and realize that his only son was lost.
    I can't say that he felt any better when he finally accepted the fact that his autistic son was not a part of the world. After coming to terms with living in an altered reality he started making adjustments and discovered that this strange, little creature of his had a different sort of ability. This boy had the unique ability to make a typical life more spicy. This boy had the ability to make his father want to be a better man. This boy could enrich and challenge his life in ways that were never expected. Every day and every moment with this boy was a wonder.





    The key to receiving the most benefit from caring for an autistic child is to stop pretending that his world is the same as your world. It is not even close. Instead I choose to get a kick out of everything he does. I get a kick out of watching him belly laugh over the same scene of The Simpsons (which the boy watches over..and..over..and over...slow-mo, speed forward, rewind..watch again, then in Spanish). I get a kick out of how he spreads his food all over the counter before he eats it. I get a kick out of watching him splash in the bathtub.And most of all I love that he will lay his head on my lap as he goes to sleep.


 NEXT UP: Accept Help

Don't Pretend That Your Life Is Normal

    I remember when I accepted that my son had issues, then I remember when I accepted that he would NEVER be normal. These were two different stages of my life. For the first four years I tried to change him and fostered the illusion that if I "therapize" him then he will catch up and be a normal boy. Early on, he was a perfect toddler because he didn't toddle and didn't whine. I took him on family vacations to Utah's National Parks, I took him to Mexico, Hawaii,and Disney. When he was small he was manageable, he had little tantrums that people understood.
    Later there came a time when he outgrew his cuteness. I will always remember the trip to Cancun. Tanner was four years old. We were on a plane and he had a super-duper meltdown because we had to shut down the DVD player upon landing. He screamed and screamed. People were staring as if they were witnessing a murder. Not one person had the class to look sympathetic. When the plane touched down we quickly whisked Tanner away in his stroller. Our harried and devastated appearance touched an airport employee's sense of compassion and he saved us. He led the way through customs and baggage retrieval and saw us quickly on our way. I will never forget him.The first truly good soul and, to this date, the only good "public" soul I have encountered in my world. Needless to say, the anticipation of the return trip ruined my vacation.
    The time had come when denial could serve me no longer. My kid was not only different, he was shockingly different. I learned that ordinary people can't deal with unordinary moments. Ordinary people are self-centered and terrified of things that they are not familiar with.I also learned that my cub was just as happy at home, with his things just the way they are. He didn't care about traveling to new and beautiful places. He didn't care about the turquoise ocean and the white sand and the sunsets. The vacation was all about me and my insistence that my family was normal. But it's not normal and I found that out the only way I could, the hard way.


NEXT UP: More Reasons to Stop Pretending

Don't Change Your Kid

    Autism didn't just sneak up on me, I could see it coming for miles. Eventually it is just a matter of acceptance. From the very beginning there was something not quite right. My baby was missing the train. I waved bye-bye to each of his milestones. By his four month check-up the pediatrician dropped the "developmental delay" word on me and a "let's wait and see" piece of candy which only fed my denial.. So I waited and didn't see. I remember placating myself with sayings like, "he is just a lazy baby, he'll catch up". At his six month check-up my world blew apart, all those new words and specialists and tests and appointments. Neurology told me my boy had neurological issues. Duh. Gastroenterology told me my boy didn't have the muscle tone to push his poop out which explained his constipation issues. Thanks.Genetics said that his chromosome test was normal. Great. Orthopedics gave me the word "hypotonic" or low muscle tone. Right. Next would come the therapies; Physical Therapy, Occupational Therapy, Speech Therapy, Head Start.
    Everybody wanted Tanner to get better and better at things he couldn't do.All these exercises and therapy sessions were just things to keep me busy and hopeful. Looking back, none of these "extras" did a thing for my son's development. He was keeping track of his progress with his own developmental clock. When he was strong enough, he rolled over ( 5 months), when the time was right for him he sat on his own, (10 months). When the stars were aligned in his world he crawled (24 months). When his body was ready he walked, (5 years old). Recently, after years of building muscle strength and coordination he decided it was time to run (awkwardly) and jump (straight up and straight down). He is 15 years old.
    At first I tried to make my boy become normal.I tried to change his destiny through manipulating his natural ability. Looking back I should have enjoyed every moment of his development without the expectations that Therapy forced upon me. I should have let the progress happen naturally and enjoyed my little pup at the stage he was in at the moment.
    So I did the mostest when I could have done the leastest  (not my only crime in this journey).The point is that I can't change my son's development or his autism. If I try to speed things up or slow things down then I am the one that loses. Alpha moms don't like to lose.

***note: behavior is something else entirely***

NEXT UP: Don't Pretend

Learn Quickly

    Remember the definition of INSANITY? You are insane if you do the same thing over and over again but expect different results. I have been insane at many stages of this autism roller coaster.All I know is that if the boy does something once (and gets something out of it) he will do it over and over again. Take the average household wall for example. The wall looks solid, heck I hang pictures on that wall, I hurt my shoulder when I bump in to that wall. In reality that wall is soft as butter to a crazy eyed kid in full bore lunatic mode. At first, when Tanner was but a 5 year old head banger, he would pit his frustrations against the carpet. But the carpet didn't fulfill his animal need for pain, nor did the arm of the couch or the mattress of a bed. In order to satisfy the demons in Tanner's head he had to feel some kind of penance through pain....but not to much pain....not enough to cause a blissful black-out. Concrete, brick, pavement caused excessive scalp damage and didn't feel quite right, but sheet rock had the right firmness and softness.
    For TEN LONG AND GLORIOUS YEARS we patched sheet rock dents. Dents grew into intrusions which grew into holes which grew into craters (depending on the year and his subsequent strength). There was always a patch kit in the corner: tape, spackle, puddy knife, sandpaper, paint roller. I can't believe we did this for THAT long. The problem is that I knew the battering ram of Tanner's head would almost daily make a mark, it was almost an expectation. I thought he would stop. I was insane.
    Maybe a lightning bolt stuck during the night but FINALLY I decided to change things. #1) The boy needs to bang his head...when things are insane in the membrane he has to have an outlet. #2) I can't change this boy. #3) I CAN change the wall...and I did. (Well, the Man did). The Man is the dad, husband and fixer of all that is broke, except Tanner.
    The solution: 1/4" particle board. Scab it on, dress it with a nice crown, paint it and then you have a very hard surface which is impossible (so far) to penetrate. AND I got an unintended consequence of the good kind.... The lunatic no longer bangs his head on the walls because he can find no purchase. In other words, these wall don't dent and hurt a whole lot more than the other walls.
     The moral of this story is that denial is a nuisance. If I had accepted my new normal in it's fullest I would have put indestructible walls up 9 years ago. Amen


NEXT UP: More Learning Stories

The Importance of Being The ALPHA

     I started becoming the Alpha Dog in my relationship with Tanner around the same time he bit me for the first time. That first bite was deep and shocking. The boy was 4 years old and was being playful. I was carrying him from one room to another and he sunk his little fangs into my forearm. The pain scared me. Did he really just bite into my flesh as if I were a steak?
     It took many, many years for me to lovingly dominate Tanner. Each year I drew a new red line regarding his behaviors and I never let him cross that red line. It was important that he knew I wouldn't give in out of convenience. It was essential that he had no question as to my limits. I offset my demands by giving him unlimited affection. Every time I put my foot down he would also get a hug and a tickle and a whisper in his ear.
    I started out by denying him attention while making his dinner. This small step changed everything. The Rule: I will not help you, sit by you, be pulled by you or stop what I am doing if I am making your dinner. period. There were sooooo many times it would have been easier to give in and change the batteries for him or put in a DVD for him. At first he was relentless, coming to me dozens upon dozens of times, pulling me here, pushing me there. But I never relented and now the little vulture only circles once or twice.
   My second step was to cease doing things I absolutely hate: like playing the Wii or letting the cub use  MY fingers to push the buttons on HIS toys.I know this sounds like the perfect bonding moment between mother and son. But no, it only feeds his obsessions and drives me apoplectic. I won't do it. EVER. When he hands me the Wii controller with great hopes and mischieviesness I just give him a big hug and whisper sweet nothings into his ear and threaten to give him a titty twister and then he goes away. He tests me and I pass the test. He respects me but feels safe enough to try for a hug.
    These two small limits set the stage for the management of more serious issues. Tanner is a persistent cute little pup when he is happy but when he looses his mind he is as dangerous as a rabid dog (except that I don't have to take rabies shots when he breaks the skin). Before my alpha attitude set in the kid was making mincemeat out of me. His blind rages involved anything and anyone within his grasp. How he used to hurt me! He could shred my arms and hands with his fingernails or leave big round bruises where he bit....and the pinching!! Unbelievable really. Such a small boy with such strong claws. His head he used as a battering ram, pounding through sheet rock walls, denting wooden tables and metal cars.True mayhem.
    As my dominance became more dominant I refused to comfort him or defuse him when he had his crazy eyes on. I started to push back and take a stand. I raised my hackles and took a fighting stance and said viciously "You want a piece of me"? Then he started laughing because he realized that I had just used a quote from Toy Story. The first time this happened I "got" it! This kid needs me to be the Alpha Mom, stand my ground, and run the show. When I throw in a favorite verse from a favorite DVD his eyes go soft. I have used the Karate Kid eagle pose also, as if I'm going to kick the living daylights out of him.  And recently I have raised a fly swatter, he knows what I do to flies.
    So with the combination of reliable affection and unwavering limits, I have created a more manageable son.These days he doesn't blindly hurt me like he used to and he always knows I have a great Simpson's quote up my sleeve......

NEXT UP......."Learning, Always Learning"

A Long Process

I wouldn't be writing unless I was comfortable in my own skin. It has only taken 46 years to be able to be confident and unapologetic about the way I live my life and the way I take care of my crazy child.And then to have the audacity to engrave my thoughts forever into written form. This process has been a long one. I'm not saying that I have reached enlightenment or anything but I don't expect things anymore. I don't control situations anymore. I don't control my son anymore.And the reason? Autism cannot be controlled. I just recently accepted this jewel of knowledge. My autistic kid is nutty and funny and I love him but he doesn't fit into a normal life. My life has to fit around him. Resentment and disappointment have long been abandoned yet I held onto control as if a happy life depended on it. Well, the more control I tried to exert over my boy's day to day life, the more crazy I became. Now I have decided to look back on the dumb and futile things I have done to make life normal. Learning from experience and giving up on control have lead me to contentment. I don't know what I would do without autism. I would be an empty vessel. Thank you Tanner for being such a bitter pill and yet the love of my life.