So I remember for the longest time thinking, as a mother, I could never have a child with special needs. I simply didn't believe I had the strength and patience it takes to appropriately tend to and care for a child who needs tubes and monitors, or wheelchairs, typing boards for communicating, or has Down Syndrome, or needs hundreds of doctors appointments, tons of medications, or, maybe even properly mother a child with a chronic serious illness. For the longest time I was unaware that I was, indeed, one of those mothers already.
I hadn't considered I was mothering children who battle their own brains. Little did I understand that mental illness filled my home. I was a mother marinating in the feelings of inadequacy, fatigue, and I was overwhelmed with the emotional strength and physical energy it was taking to lead my children through the day.
There were strong voices within myself telling me I was barely hanging on, barely holding my children--perfectly healthy children--into a world of normalcy. I was having such a difficult time keeping with a schedule and keeping my home in order, clean, and tidy.
Keeping my home in perfect order was a major complaint of my ex-husband's mother. She had one child to raise--a single child whom she adopted. I mention adoption because while there is certainly an adjustment period those first few weeks, there were no hormones, body composition changes, breastfeeding, healing wounds, emotional turmoil from the experience of birthing within the American medical model of care, etc..., she simply had to adjust to a new schedule of sleeping, changing diapers, and making bottles...she only had to do it once..
I was blessed or cursed--depending on you're own point of view--with incredible fertility. My first three children were born within three years of each other. I was a hormonal mess! Pregnant for nine months, breastfeeding for nine months, pregnant again for nine months, breastfeeding again for nine months, and once more pregnant for nine months, and breastfeeding... I was tired, I was on my own roller coaster, I was overwhelmed, I felt very alone, but I was committed to being a good mom and loved my little munchkins more than breath.
Though I read stories, played with, sang to and with my children, every single day, made lunches and supper, and took them to play outside, I was always behind and therefore unworthy of anything but criticism from my ex-in-laws. My house wasn't magazine clean, it was, at times, really very messy. There were times it was just too much to do alone. And, I...was...A L O N E.
While I was married, my ex-husband spent almost every waking moment when not at work on the computer playing games or watching movies. He was not raised to participate in the active parenting of small children: changing diapers, getting up in the middle of the night, walking and holding a screaming--ever screaming--baby, to potty train, or basically anything that wee ones need other than hugs when he came home. He wasn't raised to participate in the washing of dishes, laundering of clothes, making of beds, sweeping of floors, cleaning the bathroom or any other in house chore. These were ALL for me. He was only tasked with his 8 hours working for a corporation. I was tasked with all the above and I was T I R E D!
Oh, how I wish I had known the symptoms of early onset mental illness. If only I could have recognized that the night terrors, the vivid bloody night mares, the bed wetting, the glassy-eyed empty and vacant looks, the zero to 1000 mph in emotions, the complete spaz attacks, the 20-40 minute temper tantrums, the touch me without touching me fit-full demands, the pulling their own hair, the banging of their heads on walls and floors, and the voluntary isolation of self when upset along with so many other things were all symptoms of a bigger problem than simply being super energetic and precocious.
My two first born children live with bipolar disorder--early onset bipolar disorder.
Turns out, I have always been a mother with children who have special needs but because they don't "look" different--they don't appear disabled--I had simply misjudged my children, had been terribly unsympathetic to their struggles, impatient to their their troubles, and totally thought my children were just naughty misbehaved young people. As do others.
People don't understand that my children have a frontal cortex that
doesn't function properly. Had they diabetes, others would be
understanding that their pancreas may not work well and have patience if
there were a sudden issue with their blood sugar level. Had they
cerebral palsy, others would quickly understand their muscles may not
function normally, that they may not be able to sit up. Had they a broken leg, others would understand their
inability to run. Because they do not have an altered appearance they
are assumed simply to be jerks, brats, or obnoxious miscreants.
My
children have shifting and cycling levels of energy. At times they are
so tired being awake is a heavy and difficult task, other times sleep is
a burden not necessary. Bipolar isn't just happy/sad. It's racing
thoughts, inner overwhelming forces compelling action, it's
hallucinations, delusions, soul sinking depressions the likes of the
dark depths of a black hole, elation brighter that the noon day sun,
irritability, belief one can do things that normal people cannot, it's
distortions that can put them or others into danger, it's a
significantly higher risk for suicide.
As a mother of
children with bipolar disorder I worry. I never know who's coming out of
the bedroom door in the morning. I have no idea what's coming through
the door any time of the day.
I could be talking my child into the realization that leaping off of the
roof is not actually a good idea; I could be trying to talk to an F5
tornado wrapped up in the body of a hormonally driven young person; I could be held
hostage by one child who feels the need to have my undivided attention in all things
one second away from a complete melt down if I so much as turn my head toward one of the other children; I may need to lay on one or jump between
two to foster safety; I may have super "chatty Cathy" on fast forward to
try listening to; I might have the world's most fun and exciting
character breathing life into our home; I could be receiving a humorous
giddy ball of fun; I could be interacting with a virtual zombie barely
able to function; it is also possible half a shell of a person might be
moping about and stumbling through the halls. Of course, not only does
this apply to one child, but TWO...and they're now teens which means they are
bigger, they are stronger, they have more emotionally compelling drama,
they have a biological and psychological need to pull away from our
family and become independent--which often times looks and sounds frustrating, disrespectful, hurtful, and sad...but sometimes not. I have to be concerned with medication
and treatments. And...I have to navigate school rules, student dynamics, and IEPs
(Independent Education Plan). I also have to prepare for really bad days that could include police officers or emergency rooms.
No, I don't have beeping monitors (though it would be really helpful if there were some sort of technology that could tip me off to a mania, hypomania (whether it's euphoric or dysphoric) or depression episodes. I don't have tubes to concern myself with. There aren't any wheel chairs, nor special foods, but, YES, I am a mother of children with special needs..
Tuesday, March 6, 2012
Tuesday, February 28, 2012
Just a bit of venting I guess.
Because we have so many children, there is always room for improvement, AND, to be quite honest, we need the help, my husband and I are taking parenting classes. So we decided to take the county up on it's free "Love and Logic" classes. So far we have enjoyed them and found lots of information valid and useful.
We have some of the most amazing children, truly, but they present us with the most challenging situations.
Being a blended family with a step dad in the home, our children are easily in almost as much power as a parent. In our society, a step father or a mother's boyfriend has shown statistically to increase the danger to a child by over 52 percent. Meaning, a child is more likely to be abused by a boyfriend of the mother or a step father than the child's biological father by 52 percent. Due to this the child protective services is very leery of step parents and is quick to jump to conclusions. We've been counseled by social workers at our local DCFS to be extra careful because all a youth has to do is say someone got in their space and social workers will be at the door. WELL. Enter mental illness...with it's delusions and rages.
We need tools and protection. So, not only do we attend Love and Logic classes, we are also attending NAMI classes. NAMI is the National Alliance on Mental Illness. These classes are to teach us more about the conditions affecting our children. Why they do the things they do and how to work through these things. They teach us about the resources, medications, hotlines, and a whole host of things we are, as of yet, still unaware. We're hoping for more light and hope for us all.
Here we are, as parents we must control the environment to protect our children and provide fertile ground for learning social etiquette, morals, ethics, work, life skills, and the staples that a school provides. There must be motivation and inspiration for this as well as consequences to every choice made. What we need is more training in how to shape an experience into the best potential for positive learning for future long term happiness...and safety.
Unfortunately, we have children with anger issues related to their mental disorders. We have children who do not fully vet what they are being told or asked before they become defensive, angry, and aggressive nor what they say and do in response. We have one in particular who become so enraged that she is unaware of herself, unaware of how forceful physically she may become, and how she can multiply the events around her by 100 fold. She's oblivious to her own participation and escalation to any situation, but, she has a huge sense of equality when it comes to YOU feelings as bad as she does. If she's attacking you, she doesn't consider the strength of her blows or her flailing, she only remembers her anger at you and the sensation of your touch as you try to defend yourself, she interprets your own self defense as an attack onto her...and even, believes, your reactions are completely unprovoked and unreasonable. She lives in a hell I will never quite understand, but I do get to feel some of the ramifications as she unleashes portions of it out into the world...and, so does my husband. Her attacks are not limited to physical discharge toward a person, in fact, more often, she uses her word or punishes doors and "things" around her. She has a particular talent to shred a person into bits and pieces of human dross when she is angry, a gift unlike anything I have the power to describe.
Because we are given the mantle of parenthood and teacher and protector and provider, etc..., we must have rules, and require contributions from everyone at home to create a workable, livable, place to reside. There are curfews, calls for homework to be done, dinner to be eaten, clothes to be laundered, dishes to be washed, showers to be taken, respect to be given...we have rules that would be normal in any other home. Enforcing them is the trouble. Enforcing them is the danger...depending on how the wind blows...
As a step father, my husband has a HUGE bulls eye on his back and we're in the height of hunting season.(or so it often feels) All it takes is a slight exaggeration, an angry spew of words that relieve pressure but paint an ugly picture and off he is to be interviewed. To say it is like walking through a mind field, is frustrating, stressful, and full of pain is really a huge understatement.
So...we take classes, we make stupid rules of conduct that almost no other human being has to maneuver to protect him, to protect our whole family from being destroyed due enraged venom, misunderstandings, and hurt feelings. And really, to protect her from the realization of consequences for our family that she didn't actually wish, pain to him she ultimately doesn't desire but was just soooo caught up in the outbursts of incredible energy, racing thoughts, and rage.
Because of the climate within our home, we have to have locks on every bedroom door to ensure everyone can change clothing without anyone opening the door to prevent allegations, we have to make sure my husband is never alone with certain members of the family to prevent allegations, and now, due to someone else, we can no longer even allow children to sit with their legs toughing anyone else, we can no longer allow anyone to lean toward another because to some it may look weird. We can no longer even have THAT bit of normalcy, in order to protect our family unit. Due to the climate our family, even the slightest question of another--which would normally cause others to simply roll their eyes and continue their way of living--we have to rearrange our entire family and how we interact with each other. IT SUCKS.
I'm frustrated. I'm tired.
It hurts. It's sad. It's scary.
But... It is how things are. It is our reality.
We have some of the most amazing children, truly, but they present us with the most challenging situations.
Being a blended family with a step dad in the home, our children are easily in almost as much power as a parent. In our society, a step father or a mother's boyfriend has shown statistically to increase the danger to a child by over 52 percent. Meaning, a child is more likely to be abused by a boyfriend of the mother or a step father than the child's biological father by 52 percent. Due to this the child protective services is very leery of step parents and is quick to jump to conclusions. We've been counseled by social workers at our local DCFS to be extra careful because all a youth has to do is say someone got in their space and social workers will be at the door. WELL. Enter mental illness...with it's delusions and rages.
We need tools and protection. So, not only do we attend Love and Logic classes, we are also attending NAMI classes. NAMI is the National Alliance on Mental Illness. These classes are to teach us more about the conditions affecting our children. Why they do the things they do and how to work through these things. They teach us about the resources, medications, hotlines, and a whole host of things we are, as of yet, still unaware. We're hoping for more light and hope for us all.
Here we are, as parents we must control the environment to protect our children and provide fertile ground for learning social etiquette, morals, ethics, work, life skills, and the staples that a school provides. There must be motivation and inspiration for this as well as consequences to every choice made. What we need is more training in how to shape an experience into the best potential for positive learning for future long term happiness...and safety.
Unfortunately, we have children with anger issues related to their mental disorders. We have children who do not fully vet what they are being told or asked before they become defensive, angry, and aggressive nor what they say and do in response. We have one in particular who become so enraged that she is unaware of herself, unaware of how forceful physically she may become, and how she can multiply the events around her by 100 fold. She's oblivious to her own participation and escalation to any situation, but, she has a huge sense of equality when it comes to YOU feelings as bad as she does. If she's attacking you, she doesn't consider the strength of her blows or her flailing, she only remembers her anger at you and the sensation of your touch as you try to defend yourself, she interprets your own self defense as an attack onto her...and even, believes, your reactions are completely unprovoked and unreasonable. She lives in a hell I will never quite understand, but I do get to feel some of the ramifications as she unleashes portions of it out into the world...and, so does my husband. Her attacks are not limited to physical discharge toward a person, in fact, more often, she uses her word or punishes doors and "things" around her. She has a particular talent to shred a person into bits and pieces of human dross when she is angry, a gift unlike anything I have the power to describe.
Because we are given the mantle of parenthood and teacher and protector and provider, etc..., we must have rules, and require contributions from everyone at home to create a workable, livable, place to reside. There are curfews, calls for homework to be done, dinner to be eaten, clothes to be laundered, dishes to be washed, showers to be taken, respect to be given...we have rules that would be normal in any other home. Enforcing them is the trouble. Enforcing them is the danger...depending on how the wind blows...
As a step father, my husband has a HUGE bulls eye on his back and we're in the height of hunting season.(or so it often feels) All it takes is a slight exaggeration, an angry spew of words that relieve pressure but paint an ugly picture and off he is to be interviewed. To say it is like walking through a mind field, is frustrating, stressful, and full of pain is really a huge understatement.
So...we take classes, we make stupid rules of conduct that almost no other human being has to maneuver to protect him, to protect our whole family from being destroyed due enraged venom, misunderstandings, and hurt feelings. And really, to protect her from the realization of consequences for our family that she didn't actually wish, pain to him she ultimately doesn't desire but was just soooo caught up in the outbursts of incredible energy, racing thoughts, and rage.
Because of the climate within our home, we have to have locks on every bedroom door to ensure everyone can change clothing without anyone opening the door to prevent allegations, we have to make sure my husband is never alone with certain members of the family to prevent allegations, and now, due to someone else, we can no longer even allow children to sit with their legs toughing anyone else, we can no longer allow anyone to lean toward another because to some it may look weird. We can no longer even have THAT bit of normalcy, in order to protect our family unit. Due to the climate our family, even the slightest question of another--which would normally cause others to simply roll their eyes and continue their way of living--we have to rearrange our entire family and how we interact with each other. IT SUCKS.
I'm frustrated. I'm tired.
It hurts. It's sad. It's scary.
But... It is how things are. It is our reality.
Monday, February 27, 2012
The Trouble with Blogging.
You know what the trouble with blogging is? (back off grammar police) Blogging is public journaling. If you aren't good at keeping a written journal the old fashioned way, chances are you're also not awesome at keeping one online. The difference. No one really knows if you're keeping a journal in a book but EVERYONE who's interested is crystal clear that you're not keeping up with your blog when they check for an update but weeks and months go by without a new entry.
Keeping a journal has never been my strong suit. Though I know without a shadow of a doubt, that journaling is just about essential. Why? There are several reasons. It's fun to later look back and remember the fun things, the discovering, the lessons, the challenges overcome, the friends, the loves, the thoughts, the opinions that have changed, the opinions that have stayed the same, and more.
Paramount to my need is a sentiment a successful therapist told me. He said, "A ten cent notebook is the most effective therapist around". You know why? Partly because you cannot argue with what you, yourself, have written. You can't say: I didn't mean that, I didn't SAY that, I didn't DO that, because, you KNOW what it all meant, it's there internally and undeniably. You can see for yourself the steps you've taken or not taken. You know the emotions, feelings, and circumstances around all those words you published in your journal. You are safe with yourself and share it all right there for your eyes to see and your heart to feel. When you go back later, you are still connected to the feelings and memories of it all, but have the fresh perspective of having seen it through and are able to see where your faith was, what things you did that worked well, what things you discovered serve only as road blocks, witness to yourself things that you did/said to increase the problem, acknowledge to yourself those things you did quite capably and with awesome flair, people who were a blessing to you, and there is no doubt what is meant when you have a thought or impression about that journey because it all comes from you.
I wish I had been better at keeping a journal when I was a teenager, when I was a young adult, and up to now. I would give so much if I could just lay in the hands of my daughters a record of the struggles, and triumphs, the frustrations, the convictions, the silliness, the ME of that time. If they could just read with their own eyes the thoughts and feelings I had at their ages or in similar circumstances, written in my own hand, perhaps they could understand I was a person back then, that I had real feelings, and the stories I tell them are not fiction. Perhaps they could accept "that" person when they refuse this one. Maybe, they could have a glimmer of understanding that while I do comprehend their feelings about something I also see that it may not be wise to allow it to rule future actions...or visa versa...
What gets in my way is how easily distracted I get with my life. How tired I get at night. And...I'm embarrassed to say, how I get carried away in numbing my mind with trips to social media, watching a show of some sort, or just about any OTHER thing than writing or typing my thoughts and feelings.
What's so hard about blogging? I worry. I have so many challenges--thus the title of my blog--and I have feelings and thoughts and frustrations and situations that, I don't know if others can really understand. I mean, it's not like anyone is here in the moment with all this chaos and intensity. And I am not super articulate when it comes to describing and painting a picture of what is or has happened...or the context of it all.
I admit, fear, does get in the way. Fear? Yes. I know anyone who reads this is someone I love, yet, the chances of someone else coming along with no perspective to my family and our trials who could misinterpret my words is a real concern for me. ESPECIALLY since we have a family with more than one child with a mental illness who can, at times, completely and utterly misunderstand and misinform others of just about anything depending on what stage of their cycles they may be.
I live on a teeter totter covered with egg shells and I have to run back and forth blindfolded 100 times a day without falling and without stepping on a single shell or ALL. HELL. Breaks. loose...
Why'd I even think to start this blog? Well, I thought it would be helpful for me, for others. Others who are blending families. Others who are parents (or any other family member or friend) of someone with a mental illness. Yet, the whirlwind, the blender, the uncertain stress of mental illness keeps me highly strung and I often just want to numb my brain.
I would promise I'll do better, that a I'll be more consistent, but it's a promise I can't make. I want to, but, I'd rather be honest. I'll post. I'll share. I just know it won't be updated daily...or even weekly necessarily. There will be times it's updated a whole lot and then times when a sure and certain drought will hit. That's just my life. It's the way it is. It's what I can handle.
Keeping a journal has never been my strong suit. Though I know without a shadow of a doubt, that journaling is just about essential. Why? There are several reasons. It's fun to later look back and remember the fun things, the discovering, the lessons, the challenges overcome, the friends, the loves, the thoughts, the opinions that have changed, the opinions that have stayed the same, and more.
Paramount to my need is a sentiment a successful therapist told me. He said, "A ten cent notebook is the most effective therapist around". You know why? Partly because you cannot argue with what you, yourself, have written. You can't say: I didn't mean that, I didn't SAY that, I didn't DO that, because, you KNOW what it all meant, it's there internally and undeniably. You can see for yourself the steps you've taken or not taken. You know the emotions, feelings, and circumstances around all those words you published in your journal. You are safe with yourself and share it all right there for your eyes to see and your heart to feel. When you go back later, you are still connected to the feelings and memories of it all, but have the fresh perspective of having seen it through and are able to see where your faith was, what things you did that worked well, what things you discovered serve only as road blocks, witness to yourself things that you did/said to increase the problem, acknowledge to yourself those things you did quite capably and with awesome flair, people who were a blessing to you, and there is no doubt what is meant when you have a thought or impression about that journey because it all comes from you.
I wish I had been better at keeping a journal when I was a teenager, when I was a young adult, and up to now. I would give so much if I could just lay in the hands of my daughters a record of the struggles, and triumphs, the frustrations, the convictions, the silliness, the ME of that time. If they could just read with their own eyes the thoughts and feelings I had at their ages or in similar circumstances, written in my own hand, perhaps they could understand I was a person back then, that I had real feelings, and the stories I tell them are not fiction. Perhaps they could accept "that" person when they refuse this one. Maybe, they could have a glimmer of understanding that while I do comprehend their feelings about something I also see that it may not be wise to allow it to rule future actions...or visa versa...
What gets in my way is how easily distracted I get with my life. How tired I get at night. And...I'm embarrassed to say, how I get carried away in numbing my mind with trips to social media, watching a show of some sort, or just about any OTHER thing than writing or typing my thoughts and feelings.
What's so hard about blogging? I worry. I have so many challenges--thus the title of my blog--and I have feelings and thoughts and frustrations and situations that, I don't know if others can really understand. I mean, it's not like anyone is here in the moment with all this chaos and intensity. And I am not super articulate when it comes to describing and painting a picture of what is or has happened...or the context of it all.
I admit, fear, does get in the way. Fear? Yes. I know anyone who reads this is someone I love, yet, the chances of someone else coming along with no perspective to my family and our trials who could misinterpret my words is a real concern for me. ESPECIALLY since we have a family with more than one child with a mental illness who can, at times, completely and utterly misunderstand and misinform others of just about anything depending on what stage of their cycles they may be.
I live on a teeter totter covered with egg shells and I have to run back and forth blindfolded 100 times a day without falling and without stepping on a single shell or ALL. HELL. Breaks. loose...
Why'd I even think to start this blog? Well, I thought it would be helpful for me, for others. Others who are blending families. Others who are parents (or any other family member or friend) of someone with a mental illness. Yet, the whirlwind, the blender, the uncertain stress of mental illness keeps me highly strung and I often just want to numb my brain.
I would promise I'll do better, that a I'll be more consistent, but it's a promise I can't make. I want to, but, I'd rather be honest. I'll post. I'll share. I just know it won't be updated daily...or even weekly necessarily. There will be times it's updated a whole lot and then times when a sure and certain drought will hit. That's just my life. It's the way it is. It's what I can handle.
Tuesday, January 10, 2012
So the other day I was told I needed to catch up and share what's been going on lately.
It has been so busy and crazy and frustrating and...nice.
I'm sure if I was a really experienced writer and practiced blogger I could make about 20 thought provoking and inspiring and, maybe even, humorous entries. BUT. I'm not. So, here comes my quick update.
I changed my children's psychiatrist. Why? Because they didn't like him. No, not just because of that but it is a good reason. The main reason I chose to switch is due to their unwillingness to tell him what he needed to know in order to make appropriate assessments and recommendations for their medical care. Proper information in critical when making choices and decisions.
It seems like this would have been an easy thing to do, however; it was not. I had to spend forever on the phone with clinics and Triwest to figure out if I even COULD financially. Once I figured out a place I could go to with our insurance, I wasn't able to get both my children in to see the same doctor so I took two appointments with separate psychiatrists. T got Dr W and E got Dr A.
Dr A was an instant fit. We met with him E felt better about him than our old Dr S and we really liked that we could actually understand what he was saying--as opposed to the almost silent super mush mouth from Dr S.
Dr W, on the other hand had me spinning from the first 5 minutes of talking. He wanted to change T's diagnosis immediately. He wanted to change his medication. He was very rigid and myopic about what we've been treating him for. I decided we could go ahead and see if he was correct. We changed T's meds for all of three days. Everyone in our family and his girlfriend were completely unhappy with how it was affecting him. So I stopped that medicine and we went back to see Dr. W. He then decided his first impression wasn't correct but didn't want to put T back on Seroquel. We tried a combo of a Trazadone and Abilify. Within a few days T was completely unhappy and begging me to get him back on Seroquel.
One thing you may not be aware of is that Bipolar comes with episodes of hallucinations. T began to experience having them again after having been successfully medicated for a year and half. I tried to contact Dr W without success for a few days. It was so frustrating. When he called very upset while he was out with friends that he was seeing things again, and BEGGED be to please get him off this new regiment and back on the Seroquel. We made another appointment to see Dr W where he lays on me that Bipolar doesn't have hallucinations and gives me three options: T has some major terrible thing like a tumor in his brain, liver failing, or some other horrific thing that we must to tests to rule out; he's abusing illegal drugs; or he's flat out lying and making this up. WHAT?!!! I have read so many things in books and online; online websites about medical things and online personal experiences of Bipolar people, and there is definitely hallucinations associated with Bipolar Disorder. The other thing that Dr W laid on me is that no matter what, he will not renew a prescription for Seroquel XR for T because he's not 18 and it isn't FDA approved for anyone under 18. BUMMER.
We leave the doctor's office with T being put back on Seroquel XR until we have all the medical tests done at the hospital. I set up appointments for T to have an EEG; blood work to test his liver, drug and alcohol screening, CT scan, and a few other tests on his blood. I'm stressed and frustrated because I'm feeling like this doctor is totally dismissing my son and his experience and trying to make them something they aren't.
I went to work searching for information about Bipolar in teens. I found support for what I had already understood. I looked on http://www.aacap.org/, http://www.pendulum.org/faq.html, http://www.askabipolar.com/bipolar-experience-hallucinations/, etc... CLEARLY hallucinations are, indeed, not uncommon.
I also focused on the differences between Bipolar in adults versus adolescents. I'll just mention one here: cycling with adolescents and children can happen within a day, their cycling is much quicker or you could say their cycles are smaller than an adult who would normally have a mania period for longer periods of time. This is important to know for later.
I take T to the hospital to get his labs done and to get his CT scan. This shouldn't be long. WRONG! Dr W asked for an alcohol screening but the hospital didn't recognize the test called for and because I try to to as early as possible to avoid waiting for years we were at the hospital lab an hour before Dr W shows up to work at his office. We had to WAIT!!! Ugh! After waiting for a long time--felt like an eternity, we went down to radiology to get the CT scan done. Over an hour after registering at the lab we finally get word that the hospital knows what they need to do. The morning was stressful, maybe I'll post about that later.
A few days later I am tasked with keeping T awake for 24 hours and deny any medication for his EEG. Bleh.............................
I cannot tell you how much I never want to repeat that!
We go back to Dr W to find out the results of all this testing and find out T is looking just fine and that there is nothing wrong structurally in his brain, nothing wrong with his liver or thyroid, there's not any sign of drug or alcohol abuse. So now it's between Dr W being ridiculous or T being a storyteller of fiction.
Talking with Dr W I have to let everything out. Hold nothing back. In our conversation I let him know I'm frustrated and feel he's not helping us. I let him know I don't feel confident in his work because I'm not seeing any analysis to psychological test to support his dismissal of an established diagnosis. I told him I felt like he was pretty much disregarding every single thing we've been telling him. He asked me if he had agreed with me from the get go if I'd feel differently. My answer: I don't NEED him to be Bipolar, it's not my life's work or mission to have him be Bipolar. I have had three different established professionals tell me T is Bipolar, you're new and suddenly telling me he's not. I want to know that before we go dropping a diagnosis or changing it that there's been real and proper investigation.
I had to field some more questions about his behavior and he mentions mania being an experience a person has for at least 8 days at which point I have to interject that this is not true of adolescents. Once I started stating facts about adolescent Bipolar, and once I began using terms like: hypomania, euphoric mania, and dysphoric mania, there seems to be a total shift. Bigger the shift when I mentioned Dr K's name and his opinion that T is, indeed, living life with Bipolar. (Dr K is a very well established, highly regarded Psychiatrist who is married to a well know Pediatrician)
This has been yet another example of being your own advocate and, especially, your child's advocate. Every professional is a human being, fallible, tired, bored, energized, polarized regarding different things and everything we do, everything we think, everything we say, and everything we choose is filtered through that.
I left that appointment with a completely different rapport and opinion of Dr W. He gave T another anti psychotic medication to replace the Seroquel XR that is FDA approved for youth. The Risperidone has been the best change for us. It is working pretty well.
We had an appointment with Dr K after all of this nonsense, that happened within a small window of a few weeks, he was entirely unimpressed by Dr W for his comments about Bipolar and T not showing symptoms of being Bipolar. He went through the symptoms with me and reviewed assessments of T from previous visits with Dr K. It was completely reassuring and I felt entirely vindicated.
This is the activities regarding health I've been working with regarding T. Doesn't that seem exhausting? In another post I'll tell you about the trials on the trail with E that spanned this same time period, and A, and M, and what"s going on with Mark and I.
If you made it to the end of this, you need more to do! ha! Sorry it was so dry but it was a LOT.
Love to You and post to you later!
It has been so busy and crazy and frustrating and...nice.
I'm sure if I was a really experienced writer and practiced blogger I could make about 20 thought provoking and inspiring and, maybe even, humorous entries. BUT. I'm not. So, here comes my quick update.
I changed my children's psychiatrist. Why? Because they didn't like him. No, not just because of that but it is a good reason. The main reason I chose to switch is due to their unwillingness to tell him what he needed to know in order to make appropriate assessments and recommendations for their medical care. Proper information in critical when making choices and decisions.
It seems like this would have been an easy thing to do, however; it was not. I had to spend forever on the phone with clinics and Triwest to figure out if I even COULD financially. Once I figured out a place I could go to with our insurance, I wasn't able to get both my children in to see the same doctor so I took two appointments with separate psychiatrists. T got Dr W and E got Dr A.
Dr A was an instant fit. We met with him E felt better about him than our old Dr S and we really liked that we could actually understand what he was saying--as opposed to the almost silent super mush mouth from Dr S.
Dr W, on the other hand had me spinning from the first 5 minutes of talking. He wanted to change T's diagnosis immediately. He wanted to change his medication. He was very rigid and myopic about what we've been treating him for. I decided we could go ahead and see if he was correct. We changed T's meds for all of three days. Everyone in our family and his girlfriend were completely unhappy with how it was affecting him. So I stopped that medicine and we went back to see Dr. W. He then decided his first impression wasn't correct but didn't want to put T back on Seroquel. We tried a combo of a Trazadone and Abilify. Within a few days T was completely unhappy and begging me to get him back on Seroquel.
One thing you may not be aware of is that Bipolar comes with episodes of hallucinations. T began to experience having them again after having been successfully medicated for a year and half. I tried to contact Dr W without success for a few days. It was so frustrating. When he called very upset while he was out with friends that he was seeing things again, and BEGGED be to please get him off this new regiment and back on the Seroquel. We made another appointment to see Dr W where he lays on me that Bipolar doesn't have hallucinations and gives me three options: T has some major terrible thing like a tumor in his brain, liver failing, or some other horrific thing that we must to tests to rule out; he's abusing illegal drugs; or he's flat out lying and making this up. WHAT?!!! I have read so many things in books and online; online websites about medical things and online personal experiences of Bipolar people, and there is definitely hallucinations associated with Bipolar Disorder. The other thing that Dr W laid on me is that no matter what, he will not renew a prescription for Seroquel XR for T because he's not 18 and it isn't FDA approved for anyone under 18. BUMMER.
We leave the doctor's office with T being put back on Seroquel XR until we have all the medical tests done at the hospital. I set up appointments for T to have an EEG; blood work to test his liver, drug and alcohol screening, CT scan, and a few other tests on his blood. I'm stressed and frustrated because I'm feeling like this doctor is totally dismissing my son and his experience and trying to make them something they aren't.
I went to work searching for information about Bipolar in teens. I found support for what I had already understood. I looked on http://www.aacap.org/, http://www.pendulum.org/faq.html, http://www.askabipolar.com/bipolar-experience-hallucinations/, etc... CLEARLY hallucinations are, indeed, not uncommon.
I also focused on the differences between Bipolar in adults versus adolescents. I'll just mention one here: cycling with adolescents and children can happen within a day, their cycling is much quicker or you could say their cycles are smaller than an adult who would normally have a mania period for longer periods of time. This is important to know for later.
I take T to the hospital to get his labs done and to get his CT scan. This shouldn't be long. WRONG! Dr W asked for an alcohol screening but the hospital didn't recognize the test called for and because I try to to as early as possible to avoid waiting for years we were at the hospital lab an hour before Dr W shows up to work at his office. We had to WAIT!!! Ugh! After waiting for a long time--felt like an eternity, we went down to radiology to get the CT scan done. Over an hour after registering at the lab we finally get word that the hospital knows what they need to do. The morning was stressful, maybe I'll post about that later.
A few days later I am tasked with keeping T awake for 24 hours and deny any medication for his EEG. Bleh.............................
I cannot tell you how much I never want to repeat that!
We go back to Dr W to find out the results of all this testing and find out T is looking just fine and that there is nothing wrong structurally in his brain, nothing wrong with his liver or thyroid, there's not any sign of drug or alcohol abuse. So now it's between Dr W being ridiculous or T being a storyteller of fiction.
Talking with Dr W I have to let everything out. Hold nothing back. In our conversation I let him know I'm frustrated and feel he's not helping us. I let him know I don't feel confident in his work because I'm not seeing any analysis to psychological test to support his dismissal of an established diagnosis. I told him I felt like he was pretty much disregarding every single thing we've been telling him. He asked me if he had agreed with me from the get go if I'd feel differently. My answer: I don't NEED him to be Bipolar, it's not my life's work or mission to have him be Bipolar. I have had three different established professionals tell me T is Bipolar, you're new and suddenly telling me he's not. I want to know that before we go dropping a diagnosis or changing it that there's been real and proper investigation.
I had to field some more questions about his behavior and he mentions mania being an experience a person has for at least 8 days at which point I have to interject that this is not true of adolescents. Once I started stating facts about adolescent Bipolar, and once I began using terms like: hypomania, euphoric mania, and dysphoric mania, there seems to be a total shift. Bigger the shift when I mentioned Dr K's name and his opinion that T is, indeed, living life with Bipolar. (Dr K is a very well established, highly regarded Psychiatrist who is married to a well know Pediatrician)
This has been yet another example of being your own advocate and, especially, your child's advocate. Every professional is a human being, fallible, tired, bored, energized, polarized regarding different things and everything we do, everything we think, everything we say, and everything we choose is filtered through that.
I left that appointment with a completely different rapport and opinion of Dr W. He gave T another anti psychotic medication to replace the Seroquel XR that is FDA approved for youth. The Risperidone has been the best change for us. It is working pretty well.
We had an appointment with Dr K after all of this nonsense, that happened within a small window of a few weeks, he was entirely unimpressed by Dr W for his comments about Bipolar and T not showing symptoms of being Bipolar. He went through the symptoms with me and reviewed assessments of T from previous visits with Dr K. It was completely reassuring and I felt entirely vindicated.
This is the activities regarding health I've been working with regarding T. Doesn't that seem exhausting? In another post I'll tell you about the trials on the trail with E that spanned this same time period, and A, and M, and what"s going on with Mark and I.
If you made it to the end of this, you need more to do! ha! Sorry it was so dry but it was a LOT.
Love to You and post to you later!
Related articles
- The difference between a child psychologist and child psychiatrist (kevinmd.com)
- What Makes a Good Psychiatrist? (psychologytoday.com)
Wednesday, November 16, 2011
What a Negligent Campaign from Wilwaukee against Cosleeping
I watched the video from this news report and I have to say I am frustrated and irked. Click on the link to view the 9:42 minute broadcast.
http://www.fox6now.com/news/witi-100503-bed-sharing,0,7099533.story
Also, click on this link to see Milwaukee's campaign.
http://city.milwaukee.gov/SafeSleep
Notice the flagrant and emotionally charged advertisements which portray a total lack of judgement in every way. A mountain of fluffy pillows, large billowy blankets all wadded up, only a diaper, babies on their bellies, ALONE. And then in the depiction, to show how dangerous sleeping with your baby could be, they place a Large Knife in the bed next to a sleeping baby.
I wonder, isn't this abuse by those producing those posters? I mean, If a social worker walked into a home with a baby undressed, sleeping on his/her belly, alone on a bed piled high with lose blankets and poofy pillows, AND A DANG KNIFE, wouldn't we be hearing about that in the news? Who puts a knife with baby's reach? and leaves them alone?
Granted, there are adults in the room, but they purposely did several dangerous things to two babies in order to prove a point about something not even portrayed.
My largest issue is that instead of telling the truth about co sleeping they simply desire to amputate it from society. The truth is that co sleeping has actually reduces SIDS There are many articles and blogs explaining these things. The Fact is of babies who've died in bed with their parents there is ONE factor in play 100 PERCENT of the time in the Milwaukee area. Further more, many of the deaths attributed to co sleeping actually have Nothing to do with WHERE baby slept at all but had to do with SIDS yet on the documentation the cause of death still states "co cleeping" which is extremely deceiving and bias! Here we have an opportunity to discuss and counsel parents on how to increase the safety of something they may be doing whether they tell others they are or not. We have an opportunity to reduce dangers, to clarify, to TEACH. Instead we have fear mongering, lying, and a full on assault and a repudiation of not only the practice some choose against, but of the people who do. We have a whole sale dismissal of and denial of any thought process, love, caring, or purpose to sleeping in the same bed as your baby.
Americans love "Information" and we tend to be a bit.....um...snooty, we believe we know everything about everything and that, in fact, we DO everything better than any one else in the world. However; healthcare seems to show us over and over and over again that when it comes to Pregnancy, Childbirth, Infants, and Education, we actually kinda suck. We live in a bubble of inferiority. We are at the bottom of the barrel when it comes to positive outcomes for Mothers and Infants; Cuba, Afghanistan, Iraq, etc...even have better positive outcomes for birth and the entire first year of life for babies. When it comes to sleeping with babies, we're just like we are about circumcision, the odd ones who do the exact opposite of what other countries do...we separate them very far from us so we can have sex. (come on, you know that is one of the LARGEST reasons--the whole "marital bed" thing as if that bed is the ONLY place a couple can be together) Do your own due diligence, research the causes of death in other country for infants in countries were co sleeping is the norm: Japan, Korea, Africa, Hong Kong, etc... Or, you can, again, simply look at our own atrocious score for the first year of life and ask one startling question; What are we doing differently from all these other countries? ...and then compare the answer to the suggestions by Milwaukee or any other organization. We need to refrain from "throwing out the baby with the bath water". Yes, indeed there are things we need to avoid but this "campaign" doesn't even touch them.
Here are are few other responses to this campaign. Each has some information I found useful and agree with.
http://www.fox6now.com/news/witi-100503-bed-sharing,0,7099533.story
Also, click on this link to see Milwaukee's campaign.
http://city.milwaukee.gov/SafeSleep
Notice the flagrant and emotionally charged advertisements which portray a total lack of judgement in every way. A mountain of fluffy pillows, large billowy blankets all wadded up, only a diaper, babies on their bellies, ALONE. And then in the depiction, to show how dangerous sleeping with your baby could be, they place a Large Knife in the bed next to a sleeping baby.
I wonder, isn't this abuse by those producing those posters? I mean, If a social worker walked into a home with a baby undressed, sleeping on his/her belly, alone on a bed piled high with lose blankets and poofy pillows, AND A DANG KNIFE, wouldn't we be hearing about that in the news? Who puts a knife with baby's reach? and leaves them alone?
Granted, there are adults in the room, but they purposely did several dangerous things to two babies in order to prove a point about something not even portrayed.
My largest issue is that instead of telling the truth about co sleeping they simply desire to amputate it from society. The truth is that co sleeping has actually reduces SIDS There are many articles and blogs explaining these things. The Fact is of babies who've died in bed with their parents there is ONE factor in play 100 PERCENT of the time in the Milwaukee area. Further more, many of the deaths attributed to co sleeping actually have Nothing to do with WHERE baby slept at all but had to do with SIDS yet on the documentation the cause of death still states "co cleeping" which is extremely deceiving and bias! Here we have an opportunity to discuss and counsel parents on how to increase the safety of something they may be doing whether they tell others they are or not. We have an opportunity to reduce dangers, to clarify, to TEACH. Instead we have fear mongering, lying, and a full on assault and a repudiation of not only the practice some choose against, but of the people who do. We have a whole sale dismissal of and denial of any thought process, love, caring, or purpose to sleeping in the same bed as your baby.
Americans love "Information" and we tend to be a bit.....um...snooty, we believe we know everything about everything and that, in fact, we DO everything better than any one else in the world. However; healthcare seems to show us over and over and over again that when it comes to Pregnancy, Childbirth, Infants, and Education, we actually kinda suck. We live in a bubble of inferiority. We are at the bottom of the barrel when it comes to positive outcomes for Mothers and Infants; Cuba, Afghanistan, Iraq, etc...even have better positive outcomes for birth and the entire first year of life for babies. When it comes to sleeping with babies, we're just like we are about circumcision, the odd ones who do the exact opposite of what other countries do...we separate them very far from us so we can have sex. (come on, you know that is one of the LARGEST reasons--the whole "marital bed" thing as if that bed is the ONLY place a couple can be together) Do your own due diligence, research the causes of death in other country for infants in countries were co sleeping is the norm: Japan, Korea, Africa, Hong Kong, etc... Or, you can, again, simply look at our own atrocious score for the first year of life and ask one startling question; What are we doing differently from all these other countries? ...and then compare the answer to the suggestions by Milwaukee or any other organization. We need to refrain from "throwing out the baby with the bath water". Yes, indeed there are things we need to avoid but this "campaign" doesn't even touch them.
Here are are few other responses to this campaign. Each has some information I found useful and agree with.
Related articles
- If you sleep with your baby, you might as well chop its head off. (copyranter.blogspot.com)
- Milwaukee Ads on Co-Sleeping: The Blood Boils (hippiedippiebebe.com)
- http://workthatmatters.blogspot.com/2011/11/why-i-hate-these-anti-sids-shock-ads.html
- http://moms.today.msnbc.msn.com/_news/2011/03/07/6212018-mayim-bialik-why-we-let-our-children-sleep-in-our-bed
Sunday, November 13, 2011
I No Longer Raise Children
For the last little while I keep thinking about a phrase I heard (or read) awhile back. It basically makes the point that maybe if we all--parents, that is--stopped raising "children" and started raising productive and responsible adults we'd be in a better place.
Think about it.
The end goal is to have healthy, reliable, honorable, capable, contributors of society; to have responsible adults.
Our goal is not to have eternal children; a bunch of big people who are emotional 5 year olds...especially when it comes time for them to have children of their own or care for us when we're old and feable.
I wonder how my choices would compare as a Mommy early on if my personal directive had been "raising up adults" rather than "raising children".
I wonder now if I have been engaged in the service of bringing up responsible adults or in lifting them up into something they already were: children?
Along with this is another principle pointing out that if you treat someone as they could be you create room for growth, whereas as if you treat someone as they are now you stunt them from progression.
Putting these two concepts together gives me a strong leaning preference for removing the words "raising children" from our language and social consciousnesses.
Certainly we want to "...teach in a way that does not restrict learning...", influence the development of rich knowledge, deep compassion, intense loyalty, pure integrity, strong family ties, positivity, industrious creativity, responsibility, spiritual connection, and relationship maturity.
So, I have decided I'm no longer raising children...
Nope.
I'm now raising future productive adults...
Now...How do I make up for lost time??? And...what's my first step to positive change?
Think about it.
The end goal is to have healthy, reliable, honorable, capable, contributors of society; to have responsible adults.
Our goal is not to have eternal children; a bunch of big people who are emotional 5 year olds...especially when it comes time for them to have children of their own or care for us when we're old and feable.
I wonder how my choices would compare as a Mommy early on if my personal directive had been "raising up adults" rather than "raising children".
I wonder now if I have been engaged in the service of bringing up responsible adults or in lifting them up into something they already were: children?
Along with this is another principle pointing out that if you treat someone as they could be you create room for growth, whereas as if you treat someone as they are now you stunt them from progression.
Putting these two concepts together gives me a strong leaning preference for removing the words "raising children" from our language and social consciousnesses.
Certainly we want to "...teach in a way that does not restrict learning...", influence the development of rich knowledge, deep compassion, intense loyalty, pure integrity, strong family ties, positivity, industrious creativity, responsibility, spiritual connection, and relationship maturity.
So, I have decided I'm no longer raising children...
Nope.
I'm now raising future productive adults...
Now...How do I make up for lost time??? And...what's my first step to positive change?
Friday, November 11, 2011
Veterans Day
This is a day of reverence...
...a day of gratitude...
...of thanksgiving...
...of recognition...
...of remembering...
...of honor...
...of pride...
...of peace...
Today is Veterans Day...
I have been born to a family rich with the patriot spirit. Men from the first war this country fought all the way down to the youngest men have stood up, taken oath to protect and defend our country, her constitution, and her allies against her enemies domestic or foreign. My ancestors, my grandparents, my uncles, my cousins, have all been grateful to those before them and protective of those to come after. They love our freedoms protected and guaranteed by our Bill of Rights therefore walked without some of them in order to preserve them for us.
Eventually, I married a man of honor who also felt a deep and moving devotion and dedication to this country where so many opportunities are availed. He, too, is inspired to take up the burden of protection, sacrifice, and service.
I cannot imagine the things they've seen, done, and endured. Conversely I'm only able to imagine the amazing and wonderful things they have been apart of, the things they created, the blessings they brought to others.
Imagine how wonder it would be to know YOU were part of the reason someone now has running water; clean running water to drink and bathe in rather than the stale muddy water they had to carry in buckets to their "homes".
Imagine that because of You someone gets to learn to read and to write.
Imagine being someone children run to knowing you have a kindness, a candy, safety, a bottle of water, security.
Imagine that you have a mission to build a hospital where the infirm and injured can come and gain proper care.
Imagine the light in a mother's eyes because You or your buddy healed an illness, performed a surgery, or set a broken bone which you wouldn't have been able to seek due to distance and the inability to travel or pay.
Imagine chasing a bully away allowing neighborhoods or villages to life in better conditions, eat the whole of the food they grow, the milk their animals produce.
Imagine you make the difference.
OR
Imagine if you thought it wasn't your problem...it was none of your business and those children got no education, no clean water, no security, treats, no health care, no relief.
We talk to often about soldiers the ugliness of war, but have you given yourself a moment to consider the good, the productive, the blessings of our brothers and sisters in these areas of conflict. Have you been able to read about or witness the rebuilding of civilization, the restructuring of government for peace and prosperity, the hospitals and school erected?
Oh should we not be proud! Should we not be pleased with our fathers and mothers, brothers and sisters, sons and daughters, ought we not be joyous with our cousins and friends when they step and say that they will go, they will stand up for those who are in need regardless of the personal cost, regardless of the scary circumstances, regardless for their own personal safety because they know within themselves it's the right thing to do? Should we not look upon them with massive amounts of respect and gratitude for doing a moral right, or having the moral courage to leave behind comforts and entertainments and delicious foods while we sit back here continuing to indulge in our passions, our toys, and our treats?
Yes, indeed, our military members have served, fought and sacrificed. However, pulling triggers and launching bombs is not the sum total of their existence.
They Give.
They Build.
They Teach.
They Mend.They Sing.
They Play.
They Befriend.They Protect.
They Love.
They Plant.They Harvest.
They Paint.
They Filter.They Pack.
They Ship.
They Dig.They Enable.
They Work.
They do so much good. Governments may make decisions based on less than honorable intentions, but our service men and women while obeying there orders reach outside of themselves to work a mighty miracle for the people within those countries they've been sent.
So to all my family and friends who have and are serving in the military, and to all those whom I don't know, THANK YOU for your service, for your guardianship and
Related articles
- 11.11.11 - Veterans Day (maps101blog.com)
- Thank You Veterans! (tvnooz.com)
- Veterans Day 2011 (minx.cc)
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