So, the phone rang this morning... it was Little Man. As some of you know, Little Man is away right now, in the hospital receiving long term treatment for his PTSD, OCD, and other problems. He's been in the hospital since January so, as parents we figure 5 months now, shoot he should be doing really well. Then our world crashes down... With Little Man that happens a lot. I know that I posted our evaluation on Story of a Life the other day, and it sounded promising. However, after this phone call - we're worried again. Frustrated and worried. You see, Little Man has had a really, really rough life. He spent eight years in the prison hell that was his mother's egg donor's house - right along with her crack-addicted boyfriends, lovers, and thieves. In his short 14 years, he's been hospitalized 11 times that we know of. He is paranoid, talks to the voices in his head, and sees things that aren't there. He also believes that everyone in our house and elsewhere is out to get him.
Today's phone call was nothing short of a 30 minute argument with him about what was right and good to do, and what he should avoid. All part of the therapy... but - we're not seeing much more improvement over what it was like before he went.
Everything with him is a frustration - to the point we want to pull out our hair, and scream at the top of our lungs to the Gods - WHY HIM?
Why did our child have to go through the horrible experiences, why does Our Guy have to live with the guilt of coming through the abuse and horror relatively unscathed while Little Man suffers?
Little Man has no self-worth, he feels that everything is his fault, and that he is the reason behind everything that happened to him - if he'd just been born better he wouldn't have gone through what he did...
My frustration stems from the fact that as a mom, I feel like I should be doing more, to help him. I don't know what the hell I'm doing... but I should be doing more of it... Right?! Yeah, that's going to work... NOT.
No matter what you say to LM he still argues that No, he's not a good kid, No, he's not really smart - he just heard that amazing fact somewhere - he doesn't really know it.
As a parent, we pride ourselves in knowing just how to fix things when they go wrong with our kids - and if we can't fix it - we are generally able to find someone who can. In LMs case - this is the biggest misconception we ever had. He's unique and challenging - and has issues that even stump his therapist and doctors daily.
We were terribly saddened by his call today, but not to the point of giving up the hope we have for his restoration. We'll never, ever give up on that - but we're beginning to see the depth of his issues now, and that's scary. The doctors aren't hopeful that he'll ever be "normal" whatever the hell that is. They are, however, hopeful that in time Little Man will be able to function enough to live on his own (in a halfway house or transitional situation), hold a job (with a job coach in attendance), and go to college (again with a coach). These are all bright hopes for someone who just two years ago could not tie their own shoes, or get through a day at school without a major meltdown. So improvement, while slow and painful, is coming.
I think the biggest issue we have as his parents is that we want him home, we miss him terribly, and we can't have that right now - because as his therapist says "He's resistant to therapy and help". In his mind, he deserves to feel the way he does.
We know that this is only temporary, and that in a couple of months LM will be home - but right now, that does not help our feelings and the depth of the hole in our lives without him here. We can only continue to hope and pray that LM will stop resisting and start participating. Therapy right now is his only stop gap too - everything else - school, group, interactions - all improving. His mental state - not so much. Le Sigh....
It's just one of those things that make me feel inadequate as a parent, and that's not a feeling I like. I've had six successes - the other six children are great, four of them grown, two with kids of their own... They've had their problems, but we know beyond a doubt that they'll manage on their own. We're proud of our accomplishments with the rest of the brood - but that is always overshadowed by our seeming failures with Little Man. Thankfully, even the doctors are saying "It is not your fault - you cannot fix this at home". Doesn't make us feel much better, but it's a salve to a mother's broken heart.
So, if you pray - say a prayer for Little Man today. If you don't pray, send some positive energy, thoughts, or love his way - he could use all he can get!
As always - thanks for stopping by!!!
This is part II of my ongoing series - Living with SED. To see what came before - see Part I.
We seemed to sail through the first two years the boys lived with us - things weren't bad, but they really weren't all that good either. I grew resentful, and tired.
Let me explain a little about that first, so you don't go thinking I'm just one of those moms...
In 2005 my other half injured his back, at the time we lived in North Carolina. I was offered a job in Georgia in July, and we moved here at that time. Once we relocated, I worked about 60 hours a week during tax season from December until April. After a year or two I moved up, took a salary position, and worked 60-80 hours a week, all year long. Through all of this, Shawn was in so much pain and on so many pain killers that it was hard for him to do much. He was able to prepare light meals, do some laundry, and help with homework and stuff, but that was about it - the bulk of everything was on my shoulders.
The year after the boys came to live with us, Shawn was admitted to Miami Jewish Hospital's Rosomoff Pain Clinic. This was after two surgeries - the first a simple discectomy, the second a more radical full fusion from S1 to L4. Neither of them worked and we were looking at a 95% disability rating. Until his insurance company decided to try Rosomoff... and sent him down there for a month. During that month I did it all - laundry, dishes, cooking, cleaning, getting kids up and ready, weekend stuff, everything fell to me. Of course I had a sitter, and worked fewer hours at work, and more at home. But it wasn't easy, and again my best friend, bless her heart, saved my butt more than once.
They flew me to Miami to attend his "graduation" from the therapy program, and we flew home together at the end of his stay. It was summer break and we were doing OK... but I was exhausted.
Things moved along and the summer turned to fall, the kids returned to school. Fall turned to winter and Christmas. It was during this time that I was gripped with an unshakable bout of pneumonia. I was deathly sick and in bed until almost April. I worked about six hours a day during the entire illness. At one point, the doctor threatened to hospitalize me to keep me from working. During all this time, I was also trying very hard to maintain the house, while my dear other half, who had been bedridden up to this time, continued to stay by my side. Let me repeat - I was in bed, and he was by my side. Continuously. He didn't do laundry, cook, or clean except minimally. I was still trying to put in a full 40 at work and do the minimum to keep the family going on my own. Now, to give him credit so you don't all think I'm insane... He tried, he really, really tried. But when he got home from the hospital, I pretty much stopped doing most things. I left him with the chore of laundry, and didn't give him firm ideas of how it was done - so when a size L ladies sweater turned into a 2T sweater because he dried it instead of blocking it - I would lose it. Not that it was his fault, but that it happened to begin with. I loved that sweater! But the little things added up to big things, and because I was so sick, and on so many medications, my mental facilities were not what the normally are - and I became resentful.
When I got back on my feet - minimally, I returned to the workplace, leaving him with EVERYTHING to do at home, because by the time I got home, I was exhausted from trying to work sick. It was unfair to him, and the children, but I wasn't thinking clearly - months of mass doses of steroids will do that to a person.
So, in February I decided to strike out on my own. For 5 miserable months we lived in separate houses. In March, Daniel had a mass meltdown at school. He threw himself away... literally, and they could not retrieve him from the garbage can. He just wouldn't let go and get out. By law, they were required to report this to the Crisis Intervention Team at his doctors office. Daniel was swept away in an ambulance and taken to the hospital for evaluation. The doctors did the evaluation, and decided he needed to be hospitalized for stabilization... I felt guilty... very, very guilty. So much so that I tried calling him every day - and every day he hung up on me saying I didn't want him. I cried myself to sleep at night as I realized that my decision to be "stress free" had caused this child so much heartache and pain.
By May I had realized the errors of my ways, and that I was truly, madly, deeply in love with their dad... and I didn't WANT to live without them in my life. So I began the process of repairing our relationship.
Daniels hospitalization didn't last long, and he was returned to his dad, a Zombie... by an orderly - without any medical advise from the staff of the facility... just - here's your son... have a nice life. It was then that we understood the lack of appropriate care for our child, and we began to take steps to help him.
This is part II of an on going series about Living with SED - stay tuned for part III.
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.
