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A Breather

March 15, 2009 · Posted in Uncategorized · Comment 

Absence makes the heart grow fonder.

I’ve never believed that, but maybe I can be persuaded.

We had a divided weekend. Liz took Stephen to her home town, so that he could get some exclusive time with Grandma, Papa, and Nana, and so that I could get some time with William and Matthew.  Liz was also begged to judge a Speech Meet in Plymouth, with the Matron Saint, Daphne. I have no idea what they did, in between, and frankly don’t care.

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    But it was good for us to be apart.

    Stephen got to do what he really loves to do – he played with Pansy, and Tom, and Taber Hercules, and Scout, and Spencer, Lilly and Comiskey, and Hook, all of the cats and dogs running the fields between my Father-In-Law’s house and my Mother-In-Law’s house.  He is our “outdoor” boy, catching frogs, walking in the woods, burning trash, hanging-on in the back of a pickup, begging to go camping with Uncle, or walking with Papa, or saving baby birds with Nana, and Ellie. He can’t do that in our backyard, and I suck at such things. The neighbors offer to help, but I’m too self-conscious to admit that I need help.

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    At the same time, William and Matthew did what made me feel good, what I needed, and what I hope that they enjoyed. We had breakfast together, we went to Hooters with Uncle, we watched “Shooter,” and we talked a little bit. We didn’t bitch about homework, or grades, or my issues, or theirs. We mixed in a little basketball-watching, talked a little bit about the upcoming NCAA Tourney, and about our friends, and not one bit about school, teachers, or coaches. I felt happy, and relieved, and wanted, and I hope that they did, too.

    Earlier in the year, Liz and I marked a date on the calendar, and, we told Stephen that, if he made it to that date without school-incident, we would buy him a new pet. I didn’t think that he would make it, but he did. He is three weeks of “smiley-face-days,” and, today, Thomas The Mouse is living in his room, in a beautiful habitrail. He couldn’t be happier right now.

    His brothers seem good, too. They cleaned the house today, while I was at the office and their Mom was on the way home. They are absorbing the mouse, and the implications. They told me, last night, that it had been a fun day, and when I called home today, they sounded good. Rested, unstressed, not itching to fight at the drop of a comma.

    Today is what it feels like to be Family, to be happy, to enjoy each other’s company, and want to be around, to talk and make jokes, and not grade each other, not evaluate each other, every single minute of every single day. Today is what “whole” feels like, if only for an afternoon.

    When I leave this laptop, I am going to force some dance music on the whole clan. I am not going to eat dinner, but will have another beer. I am not going to ask about homework, or monitor medication. I am going to stand on the coffee table, am going to force my Boys onto the coffee table, and we are going to dance. We are going to dance in our own, awkward, fitful, way. And we are going to shine.

    Aw yeah, we are going to shine.

     

    The Best Day Ever

    March 10, 2009 · Posted in Parenting · Comment 

    Memories are just that, tapes that you play when days are tough, things that you view when you need a moment of relief, reinforcement, chastisement, or reassurance that your decisions, actions and/or choices were acceptable, if not “right” or “ok.” They are lessons that you wish you learned, things that you wish you hadn’t done, maybe even gifts that you still consider undeserved. Some, a few, are blessings, that you thank God for whenever you can.

    Stephen’s memory is abnormal, and unbelievable, and 100% accurate. He can quote conversations, song listings, chains-of-event, birthdays, random biographical facts of the U.S. Presidents, the items on a menu from a dinner from a vacation from when he was a toddler. He tells me who the babysitter was, where Liz and I went to dinner, where his brothers were that night that I’ve forgotten, and what time he went to bed. And what he ate or drank before he went to bed. Nothing, and I mean nothing, is ever lost, and he struggles to correlate, analyze, and understand, that data.

    His brothers – William (almost 16) and Matthew (13) – also have brutal memories. They can remember every time that they were punished, that I yelled at them, that I said “bad words,” that I critiqued their performance in a ball game, or school musical, or in the completion of their chores. They remember every single word that I’ve said in anger, or under duress, or that they’ve overheard between me and their Mother after a long night out. They don’t forget anything, either, but it isn’t for the same reasons.

    Stephen, basically, can’t forget, and struggles against that swimming, swirling, brightly colored tide. His brothers can’t remember, right now, when everything was “normal,” and we loved each other, and they had no choices to make, and there was no tension between what they want to do, and what we want them to do, and how our house needs to function. No tension between their self-concerns, and our concerns for them.  No tension between their Mother and Father, the kind of tension that erupts after day, after day, after day of calls from a school, or report cards online, or neurological appointments, or new contract demands, or bad fiscal quarters.

    I remember that day, too.

    I remember living alone for almost three weeks while Liz, William and Matthew visited Indiana, and I stayed on Long Island, where our house was. Not our home. I remember their due date home after those three weeks, taking the day off to clean the house, buy groceries, and “welcome home” gifts. I remember, mid-afternoon, spring-time, sitting in a lawn-chair in a driveway on Burtis Avenue in Rockville Center on Long Island in New York, wearing horrible denim shorts and a blue plaid shirt and listening to Bruce Springsteen until. Until.

    Until the cab came, and William threw the door open before it stopped and jumped and ran down that driveway and before I could yell “Stop,” he was in my arms and he kissed my neck and told me that he missed me, and before I could move one step with him in my arms, Matthew was waddling down the driveway, as fast as his chubby legs would carry him, and he jumped into my arms, too, and kissed my neck, too, and told me that he loved me, too. And me, William, and Matthew rolled around in that shitty driveway, and that postage-stamp-backyard, and we kissed and hugged each other until our limbs hurt. And I told them that I loved them more than anything in the whole wide world. And they told me that they loved me, too, more than anything in the world.

    That is the most important moment in my life. I would truly sell my soul for William, and Matthew, and now Stephen, to do that one more time. For us to love each other one more, heedless time, more than anything in the world, before the cab can even stop, before our feet can even find the ground.

    Status Report #3

    March 10, 2009 · Posted in Medical · Comment 

    Dr. X,

    School is going well for Stephen. He is continuing to work more independently and staying with the class more often. He is following directions better and following through the first time he is asked. He doesn’t want to go out to outside recess and doesn’t want to watch the science videos. He is using his words to convey this. His aide and teacher are going to “push” Stephen harder to stay with the class to watch the videos through rewards and or consequences, and they are going to do the same with recess.

    His sleeping is better. He still becomes very focused and obsessed with certain topics, and it is difficult for him to change the subject. He still isn’t as playful, but he does seem calmer. When upset or tired , he is cries and whines a lot, but he is not being aggressive. 

    Again, he does have more “follow through” when watching movies or playing games.

    Sometimes when he is in his “obsessional topic mood”, he doesn’t answer questions when directed at him or respond appropriately when addressing him. We re-direct him and require him to answer us.    

    He underwent the MRI and EEG yesterday and we are still waiting to hear the results. Given the long day and what was required of him, he did very, very well. 

    His behavior therapist thought he regressed last week in her session, but my husband and I were not overly concerned given that he is improving in other areas. 

    Liz Boger 

    Regression Analysis

    March 1, 2009 · Posted in Role Models · 1 Comment 

    I never studied statistics, have no innate facility for mathematics, and learned everything that I know about “business math” from either the formula functions in Excel, or from being yelled-at by impatient executives. To be honest, I have no idea what “Regression Analysis” means, in the true context.  

    To me, “regression analysis” is what I do when my son, Stephen, behaves like a four-year-old, not an almost seven-year-old, and I am frustrated, angry, belligerent, and trying to understand why. I obsess over his interests on these weekends, when he only wants to talk about Bob The Builder, or The Wiggles, or Winnie The Pooh, instead of things that his brothers talked about at a similar age: sports, super-heroes, inappropriate movies, kids who pick their noses at school, etc., etc.

    Today he wore every costume – he calls them “dress-ups” – that I honestly thought we threw away last Summer, when I went completely over the edge. He had a public meltdown, in front of several parents, and was screaming “dammit, dammit, dammit,” and telling anyone nearby that they were stupid, dumb, and that he hated them. I don’t even remember why he lost it, but I know that I made my wife, Liz, throw away several toys, videos, and books that I decided were not “age appropriate.” In my embarrassed bewilderment, trying to force an immediate change, I must have missed the costumes.

    So, today, he dragged-out every single one of them. Buzz Lightyear, Woody Cowboy, Cookie Monster, every, single, horribly fitting, threadbare, nearly see-through, one of them. He was very happy. I laughed my ass off.

    Then, we went for a ride, Stephen and I, following my Saturday and Sunday route. Every Saturday and Sunday morning, I go to the gas station, buying bottled mocha and Sobe for my older boys; then, Starbuck’s, for my coffee, and a carton of chocolate milk for Stephen.  Usually, we listen to the radio and talk about cd’s, or favorite songs, or videos that we watch on YouTube. Today, silence, for a little while.

    Then, we started talking about Winnie The Pooh. We talked about why everyone likes Pooh, and how Piglet gave-up his home during the Blustery Day. And how much Kanga loves Roo, and why the Beaver (name forgotten) wouldn’t share his lunch when Pooh was stuck in Rabbit’s hole. I extended the drive, into and out of neighborhoods, while the questions hit me like spears. He asked why I didn’t like The Piglet Movie, and what happened to all of his videos. Of course, he remembered pouring PowerAde all over his Wiggles cd, which we had to toss, and he knew that some of the Pooh videos were lost in last Summer’s Great Purge. Last Summer, I taught him to say that these things “are too little for him, are too young.” He asked me “why” today.

    I felt like a schmuck.

    He was learning lessons from those videos, lessons about caring, and being a friend, and doing things for other people, even when those things are inconvenient for you. He wonders why Eeyore is sad, all the time, and if people are mean to him. He wonders, I’m sure, why his Father took these wonderful stories away from him.

    I wonder now, too. When I was Stephen’s age, and lonely, and different, I lost myself in the world of comic books, and super-heroes, and everything that had to do with them. I did some of the “required” things – little league baseball, Cub Scouts, Sunday school – and I hated them all. But I loved reading about people who were different, and special, and saved the world without anyone knowing that they could. I hid in my room, and read, and learned how to talk to my friends by reading those thought-balloons, and seeing how Batman talked to Robin, how Captain America talked to The Vision, even how The Shadow talked to Margot Lane, and Shrevie, and Burbank. Thank god my Father didn’t take those things, and that universe, away from me. I’d be more lost now than I already am.

    This poor, beautiful, confused, and creative boy is clearly lost right now: he is the only kid in his class with a full-time “helper;” he sees a therapist that we call “his friend Jenifer;” he is taking medicine “to help him think, and behave,” because his parents haven’t found the right words yet; he lost six vials of blood to a nurse, in an assault that he will never understand; he is still facing an EEG, and an MRI, and god knows what else, until we are sure that there is nothing physiologically wrong. We’re pickier about what he eats, what he watches, what he hears, all because we’re trying to help him.

    Just like I was trying to help him when I demanded that he “grow up,” and live without The Wiggles, and Bob The Builder, and Winnie The Pooh, and his favorite, if age-inappropriate, toys. Some help I am.

    He is bewildered, and scared, and now knows that he is “different,” and “wrong,” and worries that he is sick, needs surgery, is going to die, and doesn’t know if his GaGa will recognize him in Heaven, if he goes there soon. He is twisted up like a pretzel, because neither Liz nor I have the right words, know the right script, can tell the right story. We cannot comfort him because we don’t have the right words, and he cannot communicate effectively, anyway, and the images are enough to make anyone cry.

    And, so, driving with him this morning, talking about Pooh Bear, I thought: who gives a shit if it isn’t age-appropriate, of if his friends at school make fun?

    If, every weekend, Stephen wants to visit The Hundred Acre Wood, how is that any different than any adult who visits Tolkien’s Middle Earth, or flies around in Second Life, to get away from the stresses of work? How is a day spent talking about Piglet different than going to Yoknawpatapha County, with a few beers in the belly for safe passage?

    The world, and its expectations, and requirements, are wrapping around him like a python. No wonder he wants to escape. I want to go with him. Sooner or later, we will all find our way, from Trespassers William, to Home.

    The Hulk

    February 25, 2009 · Posted in Conversations · 1 Comment 

    Something like this:

    Daddy, how does The Hulk happen?

    Bruce Banner gets angry, or scared, and it happens. He turns into The Hulk.

    Bruce Banner gets mad, and he turns into The Hulk, and he turns into green and he breaks things and yells alot.

    But he doesn’t want to turn into the Hulk. He tries not to, and he looks for medicine that will stop it from happening. He tries not to, really hard.

    But he does. He does anyway. He gets mad, and breaks things, and acts bad. And he gets to trouble. And he’s bad. What medicine does he take? Why is he the Hulk? Tell me again.

    He was hit with a lot of radiation, like a bomb, and it changed him.

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    All such signals could be subverted, as with unfaithful spouses whose behavior belied their outward statement of monogamy, but really the Betans seemed very good about keeping congruent to theirs.

    Daddy, how does The Hulk happen?

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