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Friday, November 18, 2011

View Through a Window

I looked outside this morning through the narrow window at the foot of the stairs in our 91 year old, story-and-a-half, four-square house. The window is a bit narrower than it is tall and the old frame used to divide it vertically into three separate panes of glass. This used to be my favorite window in the house, but the vertical pieces have had to be removed because of water damage over the years; they just became too weak to hold the glass. The window doesn't open, but gives a view of the north side of our yard and neighborhood, more sparsely populated now, since they took out most of the homes across from us to build a small university. The window is now decorated with a "leaded-glass" appliqué that Angela applied this past summer. We're avid fans of leaded glass and the design lends well with the age of the house and brings some character back to the once favored window.

Outside the window to the right is our White oak tree, planted in its present location some 13 years ago after it was found growing beneath the chain link fence. It grows near the stump of the old flowering Dogwood that it was intended to replace. The little tree was the only one on the lot when we moved in. Its stump is a tribute to the strength and persistence of the old Dogwood which, when we believed it to be dead, flowered for an additional six years past it's erroneous demise. On its last remnant of a branch the stump now holds a small yellow finch house that my grandfather made. The stump was the winter headquarters of a small wild-bee colony last year that we cautiously watched moving in and out by means of a small passage burrowed through the wild violets that grow around its base. It was only after Jenni and Angela were each stung by a bee that we realized they had moved in. We never saw them move out, but they're gone.

Sitting beneath the White oak is a round, metal patio table that we picked up on the side of Interstate 70 in Wentzville, Missouri while attending Michael's Special Olympics State Basketball Tournament in 2009. A large white rocking chair that TJ salvaged from a neighbor's curbside trash pile keeps the small table company, like two long-lost friends. Beneath the huge canopy that has been created by the oak I could savor a cup of coffee in the cool of this fall morning, but instead I'm here at the computer tapping away at the keys trying to rebuild my view and feelings with mere words.

A large wooden swing set frame is just to the left of the oak. In the center is a yellow plastic slide that extends from a small deck accessible by a ladder. This small stretch of yard slopes down toward the sidewalk on this side of the house. The slope makes the slide angle more sharply increasing the speed at which one travels, and has been known to cause the inattentive rider to collide with the chain link fence. The left-most end of the frame is dedicated to the failures of tomato growing. It seems as if this practice in horticultural horror has become a tradition with us. We plant and ignore, plant and ignore... most likely a genetic trait that has been passed down from our dirt-farming ancestors. Nevertheless, each year it gives us reason to gripe and procrastinate, and we celebrate at the appearance of the first tiny green orb that appears within its neglected mass of tangled branches. We consider each miserable harvest to be justification to repeat the pattern the next year.

The opposite side of the frame is its most important. Here is where the swing is. At first it held swings and a glider for our kids, much later it held a toddler swing where we enjoyed the expressions on the faces of our two grandkids as they experienced the momentary sensations of weightlessness that came at each rise of the swing's travel. It was determined that a single swing was inadequate to provide for their desire to "whing." Based on ensuing battles over who would be first and their disappointment at having to wait for the other to finish a turn, we were prompted to hang a porch swing there instead. This swing allows us to ride along as the two of them, seated one on each side, absorb this single view of the world from grandma's house.




Just in front of the window is a tray-style birdfeeder mounted on a metal pole. TJ and I fill it each week with wild bird seed and oiled sunflower seeds to attract the color and activity of the little feathered creatures in order to fulfill our own selfish delight in them. We have a resident Cardinal who often scorns the other visitors from above, perched within a huge Mimosa that we transplanted from my grandparent's home when we bought this one. Blue jays frequent the feeder, giving away their presence with a constant cry that sounds as if they're warning of a "thief,... thief,... thief!" Sparrows come and go nearly unnoticed, this due to their abundance more than their silence. They're nervous little things with varying shades of brown, some speckled along their bodies, some striped and banded along their face and head, some with small white tufts of fuzz around their legs resembling the edges of small lacy bloomers. They remind me of the passages in the Bible that promise us, "...yet, not a single sparrow falls to the ground that God is not aware."

The Mimosa I mentioned was actually one of a small group of three seedlings that I transplanted from the front yard of my grandparents' home. We lived there right after my separation from the U.S. Air Force because my income didn't allow us to afford rent in another property. My grandfather was unable to live unassisted leaving the house unoccupied, my mom needed someone to keep an eye on the place, so we moved in. We were there for a little more than two years and Mimosa seedlings were never present in that yard until the year we moved out, suggesting that there was some divine intention that we should collect one as a memento of that place, which was eventually sold, had its house and garage torn down and now stands empty. The last remaining seedling survives beside our driveway providing an enormous green umbrella, thick with the sweet perfume from its delicate pink blooms all summer long.

In Spring during the thunderstorm season, the kids and I would watch the lightning flash across the sky through this frame on the world, safe from the inevitable harm that we knew could befall anyone who was foolish enough to view the spectacle from the outside. We could also watch the water rise above the curb at the end of our driveway and jokingly observe the occasional trash-can, toy, or tire as it was driven past by the strong flow of rain water. In hindsight, I realize that very strong relationships were built within the few precious inches around that window. With their faces reflected on the glass with each flash of light from passing storms or cars, I watched our kids grow up, less afraid now of what they live with on the outside of that window, because then they were temporarily protected from the uncertainty of it while inside.

What made me notice the view on this bright morning was the way the leaves on the oak tree all pointed and shook in a single direction, driven by a long gust from the southeast wind. The leaves are the same shade of brown along the outer edges of each branch, becoming more colored with hints of yellow and red deeper into the tree, as if the cold air of the fall hasn't quite reached all the way in toward the trunk, creating the illusion of warmth in its center. Looking out, I'm reminded of my strong desire to return to my watercolor paints, in order to repeat my efforts here by using the more colorful medium to explain the beauty that has been placed right at our doorsteps and windowsills by a great and brilliant Creator. This simple view is presented to me each day in varying differences of light and color, motion and fluidity, time and mood, yet always featuring the same constant characters scattered across this man-made framing of the world that comes through the window at the bottom of my stairs.

Friday, October 21, 2011

Bullies

   Everyone's had one. I've had several over the years. Heck, I've even BEEN one. I'm not proud of that fact, but often people do foolish things until they learn that their actions bring consequences. The worst bullying I ever did was aimed toward one of my high school teachers. She taught German language class, I decided I didn't like her and succeeded in making her life at school a living hell. Yes, I was an idiot. The worst part is no apology could ever take away what I put that poor woman through. My abuse was verbal insults devoid of profanity, but exceedingly filled with vicious hatred. I never realized just how mean and nasty I could be, until much later looking back over those years with regret. Regret, borne out of disgust and disappointment with myself and the thought that I could, having been taught better by my family, devalue a person's life SO much. Miss Brown, wherever you are, I truly am sorry, and will be for the rest of my life.

   The reason I bring this up is because a friend of mine recently lost her nephew to bullies. He was a 16 year old high school student. I don't know the details of the bullying, or the details of how he died, so I can't share that with you. Though he died by his own hand, I won't say that he took his own life, because he was pushed and prodded to the point that, in his mind, death was far more comforting than his life. Can you imagine that?!? ...Death far more comforting than LIFE? That is why I decided to write this blog entry. My authorship is based on the unfortunate fact that I've had experience as both the bully and the victim.

   I'm pretty sure this young man who died had many friends and family to turn to for love and kindness. Surely this young man understood the impact his decision would have on his family, right? So, why is it that the cruel acts of what was probably a small few, bring about the sad end to such a young and promising future? I think that anyone past grade school age who is being bullied will not be very willing or likely to share what they're going through with an adult. They won't likely reach out to their parents or teachers for help because of pride. Pride is a powerful thing. To some, the loss of it is far greater than one can imagine. Let's consider the fact that these young people are trying to control their own destinies, trying responsibility on for size. They're being studied and observed, sized-up and scrutinized by the toughest of the tough; themselves and their peers. Approaching an adult for help against a bully or bullies is seen as weakness, weakness as failure, and failure is NOT an option. But, on the other more unfortunate hand, most times the adult they might turn to either can't help, or WON'T help. Sometimes, the victim is vilified by the person whom they seek out to help them. They're made to feel as though they deserve what's happening to them because of whom or what they are, like it's their fault.

   We had a kid in first grade that always ate his black crayons. You know, the fat, first grade kind (the crayons, not the kid). He had to sit up front by the teacher's desk and could only use his crayons under adult supervision. She protected him from all harms; choking, and poking and joking by the other kids in class. You couldn't speak against the kid with black-waxed teeth. On the other hand, there was another kid in the same class who couldn't focus his mind on his work, a day-dreamer. He was always looking out the window, staring out as if he had somewhere else to be, some place better to be. He couldn't stay on task and never finished his papers when the others did. I don't recall what our papers consisted of in first grade, but they must have been important. Well, the teacher didn't provide any close supervision to this kid. He wasn't moved up beside her desk where she could provide the required assistance to regain his focus. He wasn't asked to acknowledge that he'd heard her instructions for what she laid on the desk in front of him. He wasn't protected from the poking and joking of his classmates. Instead, he was often called-out by the teacher in front of everyone. She would point out that he wasn't able to finish his paper and that he was lazy and slow. He never saw the playground, except from the window that he so often stared through. His lunch would be set on the ledge of that same window until nearly the end of class when he was made to hurriedly eat it so as not to miss his bus, which he often did anyway, because he ate with the same speed he worked. Refused food due to the lack of completed work..., he often ate that way; cold food, warm milk, and a melted ice cream bar for nourishment and encouragement. He was made to feel like he was less than everyone else in the room, quite often breaking into tears and asking that he be allowed to go find his big sister, who could comfort him and protect him, he really wanted his home... and his mom. I can't begin to tell you how much I really wanted my home... and my mom. Yeah, it was me. I was unable to finish my papers! I was less valuable to the world than the kid with black-waxed teeth. There, I've turned myself over to the world now, Miss Ballentyne! Are you happy now? Miss Ballentyne. The teacher who taught a 6 year old cruelty and ridicule. The teacher who taught a 6 year old that the world is a cold and lonely place for those who don't hold to someone else's standard. The teacher who taught a 6 year old that failure is what you are, not something you do. Miss Ballentyne. The woman who taught a 6 year old child how to hate. ...true story.

   We had a kid in high-school who was just a bit feminine. Not gay, but feminine. He hadn't had a great deal of time with his father because his dad worked out-of-town a lot. His mom took care of him and his brother all the time. I'm guessing that she showered them with affection, and their instruction within the home consisted of those things their mom knew how to do. Since dad wasn't around, I imagine that the "Cussing, Spitting, and Scratching" classes had to be rescheduled and an appropriate instructor had not been retained. So, he wasn't into sports or cars or beating up others. He was an avid reader of thick paperbacks, he took shorthand, typing and bookkeeping classes, and LIKED it. He wore nice slacks and white cotton shirts with the sleeves loosely rolled mid-way up his forearm, and dressy shoes without socks. He combed his hair straight back with a touch of "Slick-Um" to keep it in place, he was skinny, spindly-fingered, and weak. He fit the bill for every bully in school and they let him have it. They terrorized him in class and in the halls; smacked him in the back of the head all the time, stole food off his lunch tray, called him names, threatened to beat him up and down, all the usual fare. I had him in gym class and I think the only reason he never got a "swirly" (head flushed in the toilet), was because of the time constraints to shower, dress, and get to our next class. He was my friend; we had always gotten along really well. But, I never stood up in his defense. Defending the weak against the very strong would show your weakness, as well. My real weakness was my inability to recognize the value in friendship. We graduated and went on to meet life on our terms. I hope he succeeded in great things in spite of all he went through, but I know that somewhere along his road the bullying he endured held him back.

   Now, as a bully, I always wanted to keep the others around me entertained, and manipulate them. I wanted to make them laugh at someone else's expense. I wanted to see if I could convince them to dislike the teacher by convincing them it was better to dislike her, than not. If they didn't dislike her, then they might get a bit of the same medicine. Close friends, on the other hand, were more likely to follow my lead while at the same time set the limit as to how far this treatment could go. It's kind'a like a pack of wolves... Each one looks to see where the other one is and moves to gain an advantage point in the hunt. One might have a good position to strike one targeted prey and then a better one is discovered by the others and the hunt then turns to that prey. Likewise, there are subtle influences on bullies that are made by their peers to either continue attacking aggressively, or lighten up. Quite often they're driven by a mob mentality toward an almost riotous aggression toward another individual. This is where I found myself a few times in grade school, when my older brother's class-mates didn't like him and couldn't catch him, they took out after me and my younger brother. A great swarm of fist-shaking, growling, screaming, yelling children behind us, we would run as fast as our legs would carry, knowing the entire time that if they caught us... they would kill us. A theory that never played out because generations of our family have had legs long enough to keep us alive. I, however, never wanted to do physical harm to my victim, just rough her up with words, smart remarks, and insubordination... which I did, all too well.

   We lived in a neighborhood that was filled to the brim with "tough" kids. They'd all been around worse stuff than us, seen more, experienced more. They were hardened criminals and most had already had jail time, or so we'd heard. They were our age, or within a few years of it, but they were much harder than us. The ones that always bullied us lived just a few houses away or along the streets where we had to walk to school. The ones that lived closer to us were our worst friends some days and our best enemies the next. No love lost between us all, or so we thought. Time passed, and then while I was at work in about 2002-2003, I heard a familiar name on the radio during lunch and listened closely... right name, right age, and I knew. It was one of our neighborhood bullies, Tommy. He was my own age, lived a couple houses down with two brothers and his mom, and the boys were a constant thorn in our sides. The three of them would come after the three of us and it would be a knock-down-drag-out right there on the lawn; fists flailing (mostly theirs), lots of cussing (mostly them), and screaming (mostly us, for mom), and the eventual bloody lips, scuffed fists, and black eyes. Then it was over like a sudden gust of wind and we were the leaves, scattered about on the lawn. The radio news said that Tommy, the oldest brother, died in his living room at the hand of his girlfriend's ex-husband, shot in the head. I went to the funeral to represent my family and, in their time of great sorrow, to try to comfort those with whom we never did see eye-to-eye. I introduced myself to everyone because they didn't recognize me. We'd all aged a bit, but more noticeable to them and also to me was, at 6'-3" tall, I towered over them... WAY over them. I couldn't believe these were the same people who controlled our street, and our fear, for all those years. They were stunned by my size; I could see it in their faces, almost like they were afraid of me. As I talked to the youngest brother he mentioned that they had been together for the recent Fourth of July holiday, they and the neighbor from next-door who also bullied us a bit. He said that one thing they had been talking about was me and my brothers. They had a family gathering and WE were the topic of conversation? He said that they all agreed that they had treated us badly, that we'd done nothing to deserve their abuse and all the wrangling that it entailed, and that they wished they could apologize for it all, that it had bothered them a lot, for a long time.

   The consequence to their action... it bothered them, a lot. That's the consequence of my actions as well... it bothers me a lot! All the ridiculous stupidity I had thrown into my effort to make Miss Brown miserable has come back on me a hundred-fold! I really wish I could find her and apologize, and badly as I wish it, so too had those boys in our neighborhood wished it. Well, there I was at the funeral, with the upper-hand, both literally and figuratively. I could've beaten him up in this moment of weakness, had my way with him and his family, insulted their brother's memory and pointed out their failings to live as they probably imagined that I lived; happy, healthy, wealthy, and well. I'm not better than they are. I wasn't better than they were. It could've been one of MY brothers lying there shot to death by another bully; we're not immune to it. None of us are immune to it! Bullies are, in this great big world, everywhere. I accepted their apology on the condition that they accept ours. After all, we also had a fist in the fight.

   We've all got at least one, all of us. But, do they have us? Do they have so much power over us that we can believe that death is more comforting than life? I can honestly say that I never considered suicide as a way out of any problem with a bully. I thought a few times that they might kill me, but I NEVER considered killing myself. I can't imagine the feelings that must drive one to make that horrible choice. That it is a better thing to be away from everyone I love and who love me, than to be around a few who, in their stupid inadequacies and useless cruelty, can drive a person to make that choice? How truly, truly sad! But, how true this is, and how frequently this statement plays out, is even sadder! What can be done? What will make it stop? Well, I think we all know the answers to that.

  •    First, get involved with your kids. Don't just read what's coming out of the book-bag; ask THEM what they did today, every day. Ask them how they interacted with their peers and look at their face when they tell you. If they know you honestly care, they're more likely to tell you when there's a problem. Either way, if they're the victim OR the bully, they'll know you care. It's critical that we reinforce appropriate peer-interaction for our kids. If we don't teach them, then they'll teach themselves. Or worse, the Miss Ballentynes of this world will! Tell your kids how it feels to be bullied, and how it feels to be the bully so they can understand how to recognize the problem. Our son, Michael came home from his first day of mainstream summer-school one year and said he wouldn't be allowed to return. When my surprised and suspicious wife asked why, he told her that he had been the victim of bullying on the bus that morning and the staff told everyone involved that, due to the zero-tolerance, bullying policy of the school, they would not be allowed to return..., if it continued. Michael didn't hear the last part because it wasn't spoken, it was inferred and, since Michael has Fragile X he doesn't understand inferences. He just heard that bullying was not tolerated, NONE of it. Since he was involved, he was out. It's important to be involved and explain everything about bullying. Especially, the rules and consequences.
  • Next, get involved with your kids. Yeah, I just repeated myself. After your kids come home, what do you do WITH them? Are they left to their own devices; cell phone, computer, television, books, music, etc? Do you involve them in what you are doing; cell phone, computer, television, books, music, etc? Not likely, because most those are avenues to individual/personal satisfaction. We can't be attached to our kids appropriately if there's a hundred-foot pile of other "things" in between. We have to make time for our kids. We need to teach them "hands-on" how they should treat people. Some people take the time to go to a shelter and serve the underprivileged, or other worthy cause with their kids. Those ideas are all well and good, but ask yourself, "How does my kid treat me and the others in the family?" If it's not that good, consider how that might improve if you throw in a bit more together time, either with a one-on-one approach, or a whole-family approach. Teach them to love others by loving others yourself.
       It also says a great deal about how our kids treat others when we see how they treat themselves. Our son TJ has serious social deficiencies in this area, due to his Fragile X syndrome. He has been mistreated by so many people, including myself on occasions when I couldn't tell where the kid ended and the Fragile X took over. But, at school, by staff and students, he really has taken a great pounding. We're seeing the result of these years coming together in our, now almost 20 years old, son. His inability to treat people decently is the culmination of years of what we now realize has been abusive treatment by those around him. Some of the abuse was direct, but some has been indirect given that TJ doesn't have the ability to understand social roles; how he fits into his own environment and how it ties to the environment of those around him. He might not properly understand why another kid gets a reward for good behavior and, having not been involved, he doesn't. He misinterprets this as a denial of equal treatment, it is then personalized in his mind that the one rewarding doesn't like him, and the conflict has begun. The same result comes when he thinks that someone's laughter is about him, he thinks that what goes on within eye or ear shot of him is about him. It takes a long and strong effort on our part to help him understand and rebuild relationships with those people with whom he has taken issue. Don'tcha just love the autism spectrum?
   Speaking from my own experience, some bullies eventually begin to regret their actions. My own regret has been boiling and churning for years. In the case of those who caused the young man mentioned above to succumb to suicide, their regret has come more suddenly. To whom would you feel more apt to give forgiveness - Me, or those whose efforts have ended another's life? I have trouble forgiving Miss Ballentyne for what she did to me. Ultimately though, it's my own fault if I let her behavior control mine. It influenced how and what I thought of myself for a long time and adversely affected my performance throughout my years of school. It set the low standard that I believed I was barely able to meet. In short, her behavior wasted quite a bit of my time. I've often wondered if she's ever thought of me and how she treated me. I may never know. But I do know that, if I ever meet her again and she asks my forgiveness, I'll give it. Because, it will make my quality of life far better than if I refused and went through the rest of my life as her bully.

Friday, October 14, 2011

Frustrated

   I had hoped that the first "real" entry in my blog would be a bit more uplifting,... profound, even. I thought, when I decided to start this, that I would drop all the cares of the world off at the door and share great philisophical tidbits of wisdom to all the people who might flock to read my,... Oh alright, I'm not kidding anyone with all that. But, I did really feel like this blog would be a good way to share personal experiences with folks. All without painting them with the bleek reality that nearly every experience we have seems to be "stained" by Fragile X. I'm not trying to depress anyone, just sharing how it feels to be a FraX Daddy. We LIVE with Fragile X. Every waking moment of my life has something to do with, and some tie to, Fragile X. FXS, the leading cause of mental impairment. Mental impairment used to be called mental retardation. And, even though our society is working to erradicate the word, "Retardation," it still FEELS the same, even though we now call it, "Impairment."
   I don't want this to read like a pity party. This is how I feel. Underneath the smiles, the laughter, the jokes, when I'm at work, at home, at church, at the store, when I'm fishing, painting, playing guitar, building some project, etc. It's always there. It permeates my sleep, it invades my morning coffee, it goes where I go and controls what I do, my how and when. I don't have Fragile X, I HAVE Fragile X. I'm not a carrier, not affected, it doesn't exist in my DNA. But, that's the only place that I'm free from it. Everything else about me IS Fragile X. I married into it, I've helped create it, I've raised it, educated it, graduated it, fed it, clothed it... Yes, it's IN everything I've done or ever will do. It's even in this blog.
   Cold, callouse, cruel,... You might be thinking this about me right now. "He's talking about his kids!", "...his wife!", "...his family!" "He's talking about them as if they were some kind of curse!" No, I'm talking about the simple fact that Fragile X is, for me, another entity within my life. It's NOT,... N-O-T, NOT who my family is, or what my family is. They are and always have been my family. They're mine, and Fragile X can't have them. What they are in my heart is precious. One day we might get rid of Fragile X, I'll NEVER get rid of my family. I refuse to allow them to suffer. I'm battling for the upper-hand against Fragile X. And, guess what... Sometimes, I feel like I'm winning ground, little by little, I'm gaining on it. We might be tempted to celebrate a little now. I could stand back, poke out my chest and yell, "Woo, hoo!" Think that,  "Yup, we're actually getting somewhere!" I could believe that, because our kids will be involved in the search for a treatment, possibly be able to help find a cure, we're SO getting a grip on Fragile X!
   Then, yesterday, TJ was sent home from school with a black eye and assorted red marks. A black eye that resulted from a badly performed MANDT restraint that was required because he escalated to the point of hitting, kicking and spitting on the teachers. He stopped taking Prozac so he can become part of the FIX for Fragile X.
   So, you see what I'm dealing with. Fragile X, that DAMNED Fragile X gets into EVERYTHING and makes a right bloody mess of it. No matter what it is, there IT is. Jerking on us, pulling us, tearing at us... Always there, always wanting a fight and succeeding in starting a war. I'm tired, worn out, frustrated, and sick of constantly trying. The saddest part is, I don't know what I can do for my black-eyed son to make this horrid experience go away. As those of us with Fragile X know, this is permanently imbedded into his memory now. The bad MANDT restraint, the black eye, the pain, the struggle with the staff,... All of it is permanent. There's no way to take it back, no erasing it. It is forever. For TJ, it's another one of  the way-too-many forevers he's had to suffer.
   I love my family they're precious to me. But, I hate, I HATE Fragile X.

Thursday, October 6, 2011

And we're off...

I've decided to start my blog for a couple of reasons; I often have thoughts- either complex or philosophic- that run through my head and I sometimes think they need to be recorded; and, I'm curious whether I can write or share anything that will hold someone else's interest.

I really don't know what to expect from this blog experience, we'll see how it goes. See you soon...