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. 


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