Saturday, March 27, 2010

Living with SED

SED? What the heck is SED? You may ask... Well - SED stands for a lot of different things, but in my life it has one meaning, and one meaning only - Severely Emotionally Disabled. As I have detailed in my  The Story of a Life blog, our son Daniel is "Severely Emotionally Disabled". For most parents that means little, and certainly for me, until I met Daniel, it held little meaning. I conjure images of crying jags, and children unable to cope with simple emotions. Unfortunately, SED is a very real, and very devastating disorder. It clouds the very processes a child uses to function. Simple actions such as tying shoes, getting dressed, or washing a glass are all reasons for a "meltdown" (a term used in the mental health field to describe what parents of neurotypical children might call temper tantrums). While a 'neurotypical' child may simply cry and thrash about a bit - a meltdown for an SED child is a totally disabling thing. 

Children with SED typically show symptoms such as an inability to learn - not a learning disability but a learning inability that cannot be justified by sensory, health or other factors. 
These children also have little to no ability to bond with others... peers, teachers, siblings, or parents. This becomes evident as young as three to five years old. And can be heartbreaking for a parent who up to a certain point believes their child is "normal". 
There is plenty of atypical, inappropriate behavior, sometimes taking the shape of highly sexualized conversation, or loud outburst of nonsense at inappropriate times. 
Then there are the scary symptoms: depression, unrealistic fears, and paranoia to name just a few. 
The Factoids website has this to say: The term ‘emotionally disabled’ does not apply to all children who have social problems, but does so if they meet one or several of the above criteria. The population of students in the United States that have an emotionally-disabled label is around one percent and even though the percentage is low, most mainstream teachers will have some encounter with a child that fits into this category even if they are not identified officially. These children will have severe academic or social frustration and will often become discipline problems for not only the classroom but the school community as a whole. 
One thing I do know as a parent... you cannot prepare for life with an SED child. Each child brings a different set of emotional and social skills to the table, and no matter how much you think you know these children never behave as prescribed, and you can never tell just how they will react. Simple situations become land mines on the side of the road. Sometimes you get lucky and avoid the mine, and just as you are breathing a sigh of relief... BAM the explosion occurs. That explosion can be anything from a sobbing fit, to a full on kicking, screaming, biting, throw-yourself-in-the-floor fit. Leaving the parent to swim in the wake of raw emotions, disbelief, and in many cases shame. 
You've all seen the mom in the store with the 8-year old that acts as if he's three, screaming at every turn, and acting out... and you've all (as I have) rolled your eyes and said under your breath "Not my child" or "What is that mother thinking", or even "someone should just tear his butt up"... What you may not know, is that mother has spent the last two  years of her life begging doctors to help her child, going from therapy to group session, to doctor, to therapist, to psychologist.... and nothing works - nothing helps, and nobody cares. 
This is the life of the parent of an SED child. In some cases, the parent just gives up, and the child looses their shot. In other cases, help comes too late, and they lose their child in the myriad of foster  homes, institutions, or juvenile facilities. In still other cases, a miracle happens, and someone who cares shows the parent the way. 
No matter the situation, no matter the child, or parenting style, SED is a tragic and inexplicable beast. One that no parent wishes to confront, but one that many parents face daily. 
In our situation, Daniel was subjected to eight years of what amounted to ritual abuse. He was molested, beaten, starved, and deprived. He was hospitalized for "stabilization" no less than five times in one year. His educational needs were met at a small special needs facility, that preferred to put him in isolation than help him discover coping skills. His biological mother preferred the company of boyfriends and fellow drug addicts to that of her children. Daniel and his older brother spent countless hours each day locked in a small 8X10 bedroom in a filthy trailer. Little was offered in the way of comfort, and often food had to be stolen from the kitchen when she was not looking in order for them to get a meal. 
It is still a mystery how children in identical circumstances can turn out so differently. Seth is the model child... he makes straight A's, he makes friends readily, and is the most loving child you may ever meet. His biggest flaw? Anger issues - go figure! 
Daniel is his polar opposite, he is failing most classes, has an inability to cope with simple stressors, has few social skills, and fewer friends. He is an adorably endearing child, no one that has met him has failed to fall hopelessly in love with his sweet freckled face. He has a fantastic imagination, is incredibly intelligent, and unfortunately is locked away in his own mind most of the time. 
When we first obtained custody of the boys, we had no idea what was wrong with Daniel. His mother described him as having "hyper-motive" seizures... Go ahead on over to Web MD and look that up... I'll wait

Yeah, I couldn't find it either - not even in a Google search... you can't find them, because there is no such thing. 
Daniel was SED - but we were yet to find this out. 
We had experience with emotional issues, our daughter PJ is bi-polar, and has been medicated since she was seven. We knew the ins and outs of that and knew how to deal with her mood swings. We were not prepared for what came to us with Daniel. 
Our first indication that something was really, really wrong with our son, occurred during his first week at our house. It was summer, and all the kids were outside... one second all was well, and the next PJ is screaming and holding Danny. We rushed out to see what had happened only to find that he had attempted to throw himself in front of a moving vehicle, and if his sister had not been as quick as she had, our story would end here. 
This incident was followed by a visit from the local police, Daniel had thrown driveway rock at a passing van, in which a child slept, in a car seat - next to an open window. When the situation became clear both to the police and the other parents, we were admonished to keep him in the back yard, and all was forgiven. 
There were two other suicide attempts in those first months, once at home and once at  a friends house (bless her heart) where he found a leash, tied it around his neck, and threw himself off her trampoline, 4 feet off the ground... Thankfully the leash had enough slack that he only sat down on the ground with no pressure on his neck. 
We knew something serious was going on and even though he had a scheduled appointment a month in the future - we rushed him to PJ's psychologist for an emergency appointment. He was considered at high-risk and placed on the first of many psychotropic cocktails. 
We home-schooled the kids their first year with us. PJ had been having trouble at school anyway, and we had pulled her out homeschooling with success. I decided that it couldn't be too difficult to add two more students to my tiny classroom that functioned from 6-9 pm each weekday, with field trips and other lessons on the weekend to fulfill our requirements for hours-of-instruction. 
It soon became evident that most subjects were lost on Daniel. He excelled in history and science, but math, English, and reading were beyond him. And we won't even bother to discuss writing. He insisted he could not read, yet managed a few sentences each lesson, however he was not learning at the same pace as his siblings. 
When school time came around again, we decided to see what our school system offered in the way of special education to give him every advantage. It was also a means of self-preservation for us... for any who have tried this know... home-schooling three children is difficult, home-schooling three children, while working full time and trying to maintain a home with a disabled spouse is virtually impossible. We never got a break. In the first two years we had the boys we went out to dinner once. We saw one movie at the theater, and we never, ever left them with anyone other than my oldest son or my best friend... 
It was harrowing, heartbreaking, and totally exhausting. 
Our school system has a special education program that rivals a lot of others. While it's not perfect, no school is -  it offers a special program in mainstream schools for kids like PJ and Seth, as well as a closed educational center for children like Danny. So we started the school year with each child in a different school. Danny at the ed center, Seth at a public elementary school in a closed program, and PJ in public middle school. 
By the middle of the first term it was evident that Seth was not yet ready for mainstream anything. He was moved to the center with Danny at the first opportunity - after he attempted to stab his teacher with a pencil for making him do classwork. 
By the middle of the school year, PJ proved incapable of handling regular school and was moved to another middle school and a closed program, where she met Mrs. Beck - the single most incredible teacher I've ever met. She's tough as nails, takes NO crap, and loves each of her students as her own child. She is a special lady, doing increidible work, and she changed our daughters life. School was suddenly something PJ could not wait for, she agonized long weekends waiting to go back. During this time Seth displayed a remarkable ability to control himself, and by the end of that year was ready to return to mainstream school in a closed setting. Danny remained at the center... and things moved on for a couple of years. 

Note: This is the first installment in a series of posts about Living with SED. 

Friday, March 26, 2010

More irresistible cuteness!

So, I've got to do a little more shameless promotion of our newest little friend. 
Doesn't he look handsome? 
This little fella scared us to DEATH a couple of times this past week - every time we touched him he would just scream bloody murder... so after much back and forth and whining - we decided that we would have to take him to the vet... we're used to BIG honking monster dogs around here... not tiny delicate purse puppies...
So off to the vet we went yesterday... and $77 later - what do we find out??? The dog is a hypochondriac! There was NOTHING wrong with him! He did have some extra long dew claws, that he might possibly have been stepping on when running like the wind through the back yard... 
So, we had the nails trimmed and a checkup and flea treatment - we're all set for summer... 
Then the vet said that we should NOT stop petting/touching/holding him when he screams unless we KNOW for sure he's really hurt - we're conditioning him to scream when he's unhappy in his situation... 
Geez - it's like having a toddler around again - just when did my dog become a child?

100 things about me

In true blog tradition, the 100 things about me post!

  • I was born in 1966
  • My father died in 1978
  • He died three days after my birthday
  • I have never gotten over his death
  • I probably never will
  • I have been best friends with the same person since 1972
  • We once went almost 8 years without talking
  • We immediately picked up where we left off after the drought
  • I was born and raised in Fort Myers, Florida
  • My father owned a sailboat named the Questover
  • My mother gave the boat to my uncle when my dad died
  • My uncle sailed that boat on the Gulf of Mexico
  • My grandmother died when I was 19 - on her birthday
  • My grandfather died when I was 22
  • Both of my grandparents died in conjunction with the birth of one of my children
  • My cousin had a baby one week to the hour after I did
  • My youngest daughter got married at the same age I did the first time
  • I have been married three times
  • I have been divorced three times
  • I do not know if I will every marry again
  • If I do marry it will be to the man I now live with
  • Four of my children are not "my" children, but his
  • We are currently surviving on unemployment
  • One of my children is severely emotionally disabled and is currently in the hospital
  • I do not feel guilty about admitting him to the hospital - he needed the help
  • It is not easy to deal with children with and SED
  • Most parents have not clue how to handle emotional problems in their children and this bothers me
  • I always wanted to "make a difference" in peoples lives
  • I had children - that makes a difference
  • My grandson is easily my favorite thing in the world
  • I appreciate my daughter's in-laws more than words can express
  • My 16 year old stepdaughter is making my hair turn gray
  • My 15 year old stepson is making my face wrinkle
  • My 22 year old son is making my ulcer bleed
  • I want my mommy
  • I have not seen my mother in over a year
  • I don't call my mother enough
  • I have not seen my grandmother (my dad's mom) in 22 years
  • I don't know if I will before she dies
  • I have not seen my elderly aunt in five years, although I speak with her regularly
  • I do not talk to my aunt as often now that ER is no longer on the air
  • I have five dogs
  • I have three cats
  • I don't need any more animals, or children
  • I could no more part with one of my pets, than I could one of my children
  • I design and create custom jewelery in my "spare" time
  • I have nothing but spare time
  • I was diagnosed with Fibromyalgia in February of 2008
  • I was fired from my job in June of 2009 - related directly to my attendance because of my illness
  • I love to write
  • I want to write a book one day - but I don't know what to write about
  • My daughter tells me I should write a book about talking to teenage girls
  • Apparently my daughter thinks I do this well 
  • I am scared of losing everything in the economic crisis
  • I may or may not support healthcare reform
  • I support the reform of programs for Children's Mental Health
  • I was one half of an exceptionally abusive relationship for 9 years
  • I am a recovering addict (10 years clean)!
  • I do not discuss my addiction with anyone
  • I have demons under my bed, and skeletons in my closet
  • My third husband was an alcoholic and a meth addict
  • I didn't know these things until after I married him
  • We did not live together before marriage...
  • I am a Christian
  • I do not go to church often enough
  • Occasionally my language is more colorful than it should be
  • I procrastinate
  • I want to move back to Florida, and cannot convince anyone in my family to go with me
  • I do not want to leave my family to go "home"
  • I would settle for moving to North Carolina to be close to my mother
  • I have trigger finger tendinitis in my left hand making it impossible for me to flip anyone off with that hand
  • I like flipping people off - this couples with #66 above
  • I was raised in church
  • I was a teenage mother
  • My oldest daughter was born two short weeks before I turned 18
  • I married the first idiot that asked me
  • My first husband was a drug addict
  • We were married only six months
  • I almost died of double pneumonia
  • I married my son's father in 1987
  • We were married for six years
  • My youngest daughters father died when she was nine
  • He took her from me and hid when she was seven
  • I did not see or speak to my daughter for 11 years
  • She found me when she was 18
  • I have never been happier at an event in my life
  • I miss my kids who live far away
  • My daughters live in Florida - which is an even better reason for me to return there
  • I want to be close to my grandson
  • My son is getting ready to FINALLY go to college - at 22
  • My oldest daughter has been with the same boy since her sophomore year in high school
  • They are not married - and have no children
  • I have a mean streak a mile wide
  • I have a quick temper - and a very short fuse
  • I get over it quickly
  • I yell... a LOT
  • I don't cry often - but when I do... its a gully washer
  • I want my children to have an easier life than I did
  • I don't know that my youngest daughter will ever have that - and it makes me sad
  • My family is my life - and I love them dearly

    Dumbfounded... at least

    As I've stated before, I love blogging, and I love bloggers. Today I was tooling about the internet searching for new mommy/daddy/parenting blogs to check out when I stumbled across this gem of a blog. The Bean Blog is written by the mom of five kids, who not only works full time, but attends school part time. But it wasn't so much the overall theme of the blog that grabbed me and sucked me in... it was the first post I read that got me... The post is titled "In an Instant" and it's profound to parents of all walks of life - to any parent, any where, at any time... it deals with death - specifically the death of a child. A beautiful 16 year old girl, taken too soon, causes unknown. 
    The post got me to thinking... What would I do if I lost one of my kids... how would I react? Devastation does not even begin to describe the emotions that come to mind. Christine put those thoughts into words in a way I probably cannot do justice... 
    But I totally have to say my piece... or at least try.
    I lost my dad when I was 12... I know how I felt as a child losing a parent. I could not imagine if those circumstances were opposite. 
    I know that we had a very close call with my son when he was just 18 months old... a common cold turned into double-pneumonia in the middle of the night, and I was horrified. It was the first time one of my children was hospitalized...I was 22 and had NO clue what I was going to do. I sat by his bed for the entire 48 hours he was there - alone. I had noone to comfort me, no body to take a turn at his bedside so I could eat, shower, sleep, or even pee. I did not complain, but I did pray. Constantly - I begged God not to take my only son... I bargained, I plead, and I cried. Still I don't know what I would have done had he not made it... 
    All I know now, is that I appreciate my kids more because of that one experience. I also know that losing my dad at a young age - and my DH losing his mother at a  young age - profoundly affected the way we interact with our children. We are a huggy-feely type family. Our kids KNOW beyond the shadow of a doubt that we love them, we tell them all the time. We hug them, kiss them, and embarrass them, even in front of their friends...because we know the guilt that goes along with losing a parent... Did he know I loved him? Did I say good bye? What did I do wrong? Does this mean he didn't love me? 
    I thought all those things and more when my father passed away - and I don't ever want my children to wonder if I know they love me... I know - beyond a shadow of a doubt, that deep down, all seven of them love me deeply and would be devastated beyond belief if I died tomorrow. However, this still does not give me anything to go on in response to how I would feel if one of them dies before me. 
    Its not something that I want to think about as a parent... I want to stick my head in the sand and say "It can't happen to me" and pray that it never does... Even so - I will never be prepared... 
    As Christine reminds us in her post - love your kids... keep them close, hug them daily, and never, ever, let them forget how much you love them.

    Part Three - The tales of Childhood

    So few things are memorable when you are little. Oh, I know we all THINK we truly remember things that happened to us when we were small - but few of us truly do. My earliest "memory" is that of a very large rattlesnake outside on our porch when I was but three. I was precariously perched on a chair with tiny fingers straining to reach the latch, when my mother, who was outside hanging clothes on the line, saw me and the snake - at the same time. 
    As a mom, I can only imagine her horror as she saw her tiny girl about to make the mistake of her life. Mother screamed for my grandma, who had just walked into the kitchen to find me teetering on the brink of success in my escape. She snatched me off the chair as my mother burst through the front door in a panic. A snake on our back porch!!! She almost got out the door - that snake would kill her!
    By this time of course my grandmother had already called daddy and papa home from the boat to deal with the miscreant snake who felt this was his new home. 
    Fortunately for all us women folk, the dock was moments away and they arrived quickly. Granddaddy took his gun, and promptly made skin from the snake. Funny, it didn't look like a six foot western diamond back rattler... but it was. 
    This is not a true memory - it's a story told over and over again, of which I have stored the details from each telling. It is my mothers memory, passed on to me. 
    I could tell all sorts of fantastic tales of the sea from my grandfathers 25 year career as a shrimp boat captain - all lived through him by a very imaginative and thoughtful little girl, who thought catching shrimp in the ocean was the most fabulous job ever. Like the one about his mole...
    My grandfather had a very prodigious mole on his forehead - I mean this thing had it's own eyes! I can vividly remember being about six when I first mustered the courage to ask him how it came to be there... Of course, NOW I know that he was likely born with it, and that it had probably caused him immense pain as a child. I also know that it was rude of me to ask about it... but hey, I was only six, and he was my papa nothing was remotely rude with him. The story he told was one of sea-faring adventure, which convinced me even further that he was a hero of the finest sort! 
    The tale was that he was about 20  miles off the coast of Campeche, Mexico hauling a mother-lode of shrimp, when suddenly over the transom of the boat lept the largest shark eyes had ever seen. Well that shark didn't like his shrimp being harvested, and he had it in for my grandpa. So when it landed on the deck with a wet, slimy plop, grandpa decided the shark could not stay. 
    He asked the shark why he was there...and the shark told him he was just following his dinner. The argument of old... just who do the riches of the sea belong to - the fishermen who depend upon it for life and sustenance, or the fish who depend upon it for life and sustenance? 
    Well that old shark, according to my grandpa, sat there and discussed this age old conundrum with him. And they came to an agreement - if the shark could have just a little human intelligence, then he wouldn't have to work so hard to eat... and in return, my grandfather could keep all he caught, without fear of retribution from the shark population, with the understanding that if grandpa's feet ever touched the water, all bets were off. Well grandpa made that deal, and the shark reached up and touched his forehead, taking just enough intelligence to keep him from having to work too hard to eat, and leaving the rest behind. When the shark pulled away, granddaddy's forehead stretched out, and pop! out came the mole. 
    What a story to grow up with. I believed that tale until I was about twelve, and learned from the movie Jaws, that sharks not only cannot talk, but if they could, man was the LAST thing they would talk to, much less make a deal with. 
    But that story gave me so many years of wonderfully imaginative games to play. I was a captain in my own right, sailing the seas in a ship built from rock, wood, dirt, or gravel, depending on my location when the fantasy took hold. I sailed from Greece to Austraila, around the Cape and down the coast of Africa. I was an adventurer on the seas and the fish talked to me. We had a wonderful arrangement in which sharks brought me barrels of freshly caught shrimp, that were carefully steamed over the blow holes of whales passing by. 
    Other stories, that were true, remind me of my father's childhood, and what it would be like to grow up with siblings, as I had none at that age. 
    They all had one underlying theme - the ocean. As a family, we were bred to be on the water. Saltwater flowed through our veins, and still today I hear the call of the gull, no matter how far from the ocean I wander. 
    I had a great-grandfather who was an author. For close to forty years, he wrote for Fur, fish, and Game magazine. His stories were about a pair of hunters named Charlie and Lew. Their adventures fueled even more fantasies in the woods behind our house. 
    Growing up in the relative seclusion afforded in Tennessee in that time molded me into an independent thinking woman. It prepared me for the things to come in my life - and it was an experience every child should have. The experience of unbridled imagination, untamed by reality. The experience of a rich family history, embellished enough to make even the mundane seem exciting and adventurous. For those memories, and many others, I am grateful to my family - the made me who I am today!

    Part Two - Friends

    So few people in their lives meet a person with whom they will bond forever. I met mine in the first grade. Mrs. Cavet's class to be exact. We were both six or seven - and we both liked the same boy... not in the same way we would like boys later in life - but all the same, it became a competition. The day we became friends one such boy was the cause. 
    Standing in line next to "the boy" (who remains nameless because I have no idea where he is today) was a special treat for either of us, and on this particular day it was my turn. Being first graders, we were made to hold hands in two lines - boys in one, girls in another. This processional took us to the cafeteria, playground, or bathrooms depending on the time of day. This was long before the days of modern schools where bathrooms are right outside the classrooms, it was a hike in our Elementary school - which still stands today, and educates hundreds of little girls and boys just like us every year. 
    We walked to the playground this day, hand in hand and I chattered away about swings, slides, and see-saws - the boy was mine for recess, and I intended to take advantage of it! The doors opened, and the playground was ours. It was just at that moment that I hit the ground... I looked up in time to see her hand in hand with him... 
    She was pretty, long chestnut hair, beautiful eyes, and manners that rivaled even Emily Post. And she had just tripped me up, and stolen the boy!
    Immediately, I was on my feet and across the playground... nobody puts me on the ground and gets away with it... and this is where memories get fuzzy. I cannot remember what was said, or done - but I remember one thing... That girl became my best friend that day. A friend that today, 38 years later I can still call in the middle of the night and cry to... A friend that no matter what it was, would be there in an instant if I needed her. 
    No matter how many years or miles separate us we are still best friends. We still are the only ones that know the deepest and darkest secrets of the other. We know what the other's childhood dreams and goals were, and we know which of those dreams came true, and which was ripped away like so much wrapping paper. 
    For the next six years of our lives we were totally inseparable. We spent weekends at each other's houses - or in my favorite place, the family sailboat. Many memories were made on the Chickamauga Lake - by two young girls who knew nothing but freedom, peace, and love. We had never been tainted by tragedy, sickness, or death. Our outlook on life was full of childish idealism and it was perfect. I would not change a moment of those years, and I'm pretty sure that Kim would not either. We were two girls living the life of Riley, and loving every minute of it.  
    But as in most things in life our time was not to be forever. Things change rapidly when you are a child. And intertwined in all the changes are opportunities for growth. As things changed in our lives, we continued our friendship into the rich and wonderful relationship it is today. 
    There were other friends along the way in those years, but none who impacted my life in the way Kim did... and none that I even know where are today. 
    That is the way of the childhood friendship - some stay, and some you never see again.