I don't go to therapy, I probably should but I don't have the time or inclination to pay someone ninety bucks an hour to stare and nod with the occasional "How did you feel about that?" sprinkled in. I process my emotions through writing. I haven't done so publicly until starting a Blog.
I am dealing with a lot of emotions right now. I guess to understand them I have to go back through my childhood and what led me to have the relationship I now have with my family.
I was born to a 15 year old mother and a 16 year old father. My father had issues with drugs and alcohol and my mother was not ready for the responsibility of an infant. We lived with my grandparents in a basement apartment and my grandmother kept me while my mother went to school and participated in all those things that high school kids do (dances, talent shows, and clubs). I think to the extent that my mother was capable, she loved me. I was more like a doll or a pet to her, than a child though. My grandmother filled the role of "mother"for me. There were issues with mother and daughter before I came along and my mother dating my "bad boy" father and becoming pregnant was her misguided stab at my grandmother. I quickly became a pawn in their struggle for control. My mother wanted desperately to be independent of my grandparents, who had an even tighter reign on her after my birth because she needed them to provide child care, diapers, housing and so on.
Eventually, my grandfather bought the house next door to them for my mother. I had spent the first 8 years of my life able to spend days with my grandmother, who got me ready for school and picked me up from school and made my snacks. Honestly, my memories of my mother are vague. She was a shadow in my early childhood. My grandmother was also a disturbed woman, whose emotions towards me and my mother fluctuated wildly. She would tell me my mother loved me one minute and if my mother spurned her she would tell me I had a bad mother who didn't know how to care for me. This, of course, enraged my mother who wanted so badly to be free of her parents.
Then my mother did what a lot of women do in that situation. She
married someone who was more financially stable and moved away.
I had already begun to show disturbing signs of mental illness and stress. At 8 years old I was not potty trained and had difficulty sleeping. I thought that there was a robot coming down the street to get me. I can still remember the sound of metal grinding as the heavy foot steps grew closer. Every night I would listen to them grow closer, paralyzed with fear. I would spend hours fixated on the swaying trees at night, from which I saw monsters rise. I was self abusive and over sensitive. I would slap my legs until red welts rose on my skin in violent fits. I remember feeling so out of control with no way to explain it to anyone around me. In second grade I was tested and found to have a very high IQ. For my family that served as an explanation for my more bizarre behavior.
When my mom remarried my problems intensified. My step father was physically and emotionally abusive towards me. He was obsessed with control and order. I had strict rules, many chores, and even our food and "family time" was delegated to the nth degree. By 9 years old I had what should have been recognized as full-blown mental illness. I became obsessed with germs, I washed my hands until the skin was peeling and bleeding. I pulled out my hair and ate it. I thought I had Muscular Dystrophy and heart palpitations and would beg my mother (who had by now gotten her nursing degree) to check my heart with her stethoscope every night. I also developed an obsession with the weather. I was terrified of tornadoes and wouldn't go outside if a single dark cloud loomed. I had to watch the weather every morning ( a particular channel, Eric Thomas was the only weather guy who knew what he was talking about) and if storms were called for, I wanted to spend the day huddled in the basement. My step dad was intolerant of my peculiarities, he would get angry and force me into the car and drive me around during storms. I would absolutely panic, screaming, kicking the seats and windows and begging to go home because I was frightened. He would scream at me and berate me for being so "absurd."
While my parents and grandparents battled furiously over who would raise me (my grandfather once showing up with a shot gun after finding bruises on me) I descended even further into madness.
I began to starve myself. I don't even know why really. I was a chubby, freckle faced and unattractive kid. I wanted to be thin and attractive, but now that I look back I think it was much a stab at gaining some sort of control as anything else. My step dad would have none of it, he forced me to sit at the table until I ate. I then began making myself vomit. When my mother discovered what I was doing I hid it by throwing up into jars and hiding them. By the time I was 12 I had a very serious eating disorder. Only then did they take me to therapy. By that time anger and rage had consumed me. I resisted talking to the therapist. I would destroy things that belonged to my mother and did anything that I felt would irritate her. Once an honor roll student in gifted classes, I was now acting out in school.
At 12 years old I had morphed from a weird, nerdy, and somewhat disturbed kid into the preteen from hell. It was if another personality had developed to protect the little girl inside who was still so fragile. Later on , in therapy, I learned that eating disorders are often viewed that way and that girls who have them go through a distinct personality change.
I provoked my mother and step father at every opportunity. I embarrassed them any time I felt I could and blatantly did the opposite of everything they said. I hated them and wanted to live with my grandparents, who were still fighting to have me live with them. It finally exploded into a violent altercation between me and my stepfather. My mother called the ambulance to have me hauled away to the nuthouse, but when the police arrived they found me sitting in the kitchen crying and on the phone with my psychiatrist. My clothing had been ripped and I had red rings on my throat. My step dad felt confident that I would be arrested, but the cop didn't feel that way at all. He threatened to arrest my step dad for child abuse. My mother had since had another baby and the prospect of losing her new family was too much. I was disposable, my step dad was not. In order to prevent legal trouble I was packed up and sent to my grandmother and grandfather.
It was far from a happy ending for me. The next chapter in my life would lead me down even darker paths and give me a glimpse into the origins of my mother's dysfunction. I often wondered how a human being could be as devoid of emotion as my mother seemed to be. She seemed to be a broken person, clinging desperately to the illusion of a "good Christian home" despite the obvious chaos under our roof. I saw this as duplicity and deception on her part, I felt that she wanted to present a certain image to the world. Later I would realize that this was denial and detachment on her part. I would soon learn why.
There is no great genius without some touch of madness. ~ Epistles
Monday, September 3, 2012
Saturday, August 25, 2012
Bloom Where You are Planted
"Bloom Where You are Planted." My grandmother has a framed cross-stitch with those words sitting on her mantel. She has had it for years and considers it a sort of mantra for herself. As a teenager I never really paid it much attention. I argued that people weren't "planted", they chose a spot and put down roots.
Yesterday, as I walked into her house to drop off the kids for their weekly visit, the cross stitch caught my eye again. This time I felt it resonate.
I have been feeling quite sorry for myself and my situation lately. I am not usually one to wallow in the "could have been" and "should have been" in life; I usually just muddle through and consider it my job to do the best that I can with the hand I have been dealt.
This week, I was faced with a lot of situations that served as painful reminders of my son's disability and the growing gap between his development and that of his "normal" peers. I think in my head I harbored the illusion that Cole was going to grow out of a lot of his issues and be this quirky but intelligent, successful, and independent man. Maybe a scientist, a doctor, or an artist.
I finally realized that Cole's Autism runs deeper than I thought it did and it's pulling him back with such force that I can not see how I will pull him forward through this life.
Then there is the financial burden of raising four children on one income and the frustration that I can neither work or attend college so that I can contribute in any way because of the demands of raising four children, two of which have been identified as having special needs. I have lived life in fast forward and where most couples are just starting out, we are 11 years and four children into this life. We are trying to live the upper middle class lifestyle, have our kids go to the good schools, participate in sports, have nice clothes, new shoes, and vacations. Often we fail at that, and it hits me hard because I swore that I would try to never have my children be at a disadvantage because we were teen parents. I have always tried to be the "traditional" mother that is usually characterized by women ten years older than me, having gone to college, began a career, met their sweethearts and gotten married, bought the house with the white picket fence, THEN had the 2.5 kids and the dog.
I struggle with the bitterness of regret. I wanted to go to college, all my teachers told me I was bright and could be anything I wanted to be. In 4th grade I had dreams of Harvard or Yale and even during the worst of my battles with Bulimia and OCD I still scored in the top two percent consistently. Circumstances and bad choices derailed me from fulfilling my aspirations. It has been hard to come to terms with the prospect of never actually seeing my dream realized.
This is where I have been planted, and I have struggled to grow in the often unforgiving terrain of my life as it is now. I have certainly developed the thorns to protect myself, but I don't think I have allowed myself to bloom.
I have got to learn to look at my life, not for what is could have been or should have been, but for what it is now. To "bloom" indicates more than growing, it indicates flourishing and I have not found a way to do that yet. I think the first step is to find happiness and satisfaction with myself and my life as it is now. I need to accept Cole's Autism and the impact is will have on my life forever.
I was a teenage mother. I got married too young and there are things I missed out on because of that. I had a child with a disability that has changed the trajectory of my life forever. I can't change those facts.
But...
I have four beautiful children, who give me a sense of purpose and fulfillment that no career in the world could give me. Cole's Autism has taught me to be more accepting of people, to see the world through a different set of eyes, and it has presented me an opportunity to help others who are struggling. Degrees and accomplishments can not cuddle up and watch cartoons with you. Vacations and nice shoes can't replace mom being there to greet you and make you a snack when you get off the bus. We will always have less things, but I am willing to give up things to have time with my children. I suppose I need to worry about making memories instead of money and I need to help Cole find his happiness... not his highest level of functioning.
Of all the hard lessons I have learned in life, I think the most valuable one I can teach my children is to learn to bloom where ever they are planted.
Yesterday, as I walked into her house to drop off the kids for their weekly visit, the cross stitch caught my eye again. This time I felt it resonate.
I have been feeling quite sorry for myself and my situation lately. I am not usually one to wallow in the "could have been" and "should have been" in life; I usually just muddle through and consider it my job to do the best that I can with the hand I have been dealt.
This week, I was faced with a lot of situations that served as painful reminders of my son's disability and the growing gap between his development and that of his "normal" peers. I think in my head I harbored the illusion that Cole was going to grow out of a lot of his issues and be this quirky but intelligent, successful, and independent man. Maybe a scientist, a doctor, or an artist.
I finally realized that Cole's Autism runs deeper than I thought it did and it's pulling him back with such force that I can not see how I will pull him forward through this life.
Then there is the financial burden of raising four children on one income and the frustration that I can neither work or attend college so that I can contribute in any way because of the demands of raising four children, two of which have been identified as having special needs. I have lived life in fast forward and where most couples are just starting out, we are 11 years and four children into this life. We are trying to live the upper middle class lifestyle, have our kids go to the good schools, participate in sports, have nice clothes, new shoes, and vacations. Often we fail at that, and it hits me hard because I swore that I would try to never have my children be at a disadvantage because we were teen parents. I have always tried to be the "traditional" mother that is usually characterized by women ten years older than me, having gone to college, began a career, met their sweethearts and gotten married, bought the house with the white picket fence, THEN had the 2.5 kids and the dog.
I struggle with the bitterness of regret. I wanted to go to college, all my teachers told me I was bright and could be anything I wanted to be. In 4th grade I had dreams of Harvard or Yale and even during the worst of my battles with Bulimia and OCD I still scored in the top two percent consistently. Circumstances and bad choices derailed me from fulfilling my aspirations. It has been hard to come to terms with the prospect of never actually seeing my dream realized.
This is where I have been planted, and I have struggled to grow in the often unforgiving terrain of my life as it is now. I have certainly developed the thorns to protect myself, but I don't think I have allowed myself to bloom.
I have got to learn to look at my life, not for what is could have been or should have been, but for what it is now. To "bloom" indicates more than growing, it indicates flourishing and I have not found a way to do that yet. I think the first step is to find happiness and satisfaction with myself and my life as it is now. I need to accept Cole's Autism and the impact is will have on my life forever.
I was a teenage mother. I got married too young and there are things I missed out on because of that. I had a child with a disability that has changed the trajectory of my life forever. I can't change those facts.
But...
I have four beautiful children, who give me a sense of purpose and fulfillment that no career in the world could give me. Cole's Autism has taught me to be more accepting of people, to see the world through a different set of eyes, and it has presented me an opportunity to help others who are struggling. Degrees and accomplishments can not cuddle up and watch cartoons with you. Vacations and nice shoes can't replace mom being there to greet you and make you a snack when you get off the bus. We will always have less things, but I am willing to give up things to have time with my children. I suppose I need to worry about making memories instead of money and I need to help Cole find his happiness... not his highest level of functioning.
Of all the hard lessons I have learned in life, I think the most valuable one I can teach my children is to learn to bloom where ever they are planted.
Sunday, August 5, 2012
Blogging for a Cause
Cole was different from the time he was born, he never acted normally
as infant and suffered from sleep and feeding issues from day one. He
would cry for hours a day, until he vomited or developed hives or simply
passed out from exhaustion. He demanded to be held around the clock and
threw horrible fits whenever I tried putting him down, as if he were terrified of being let go. The panicked screams didn't seem like they were
the normal temperamental cries of a spoiled baby whose mother simply
didn't put him down enough. He was absolutely terrified of the world around him. I took my concerns to his
pediatrician and a developmental specialist who advised me to let him
cry it out. Two evaluations showed him to be developmentally normal, but
socially delayed.
I assumed maybe I was crazy, maybe all kids do stuff like this, and I am overreacting.
From 2 to 4 years old Cole seemed to be in his own world, he talked but a lot of times he didn't make sense. He would repeat phrases over and over and he called himself "You" instead of "Me" or "I." If you asked him "Do you want a cookie?" he replied "You want a cookie." instead of yes or no. I saw other children his age having conversations, but he didn't seem capable. I wondered, but his doctor didn't seem overly concerned, so again, I assumed that maybe I was making too much of it. He was talking after all and as the doctor pointed out, he had a large vocabulary.
He was also afraid of everything, lights, vents, fans, trash cans, noises, hands, eyes, and pipes. The world seemed to be a foreign place to him and the smallest thing seemed to send him spiraling into a meltdown that saw him banging his head or injuring himself in other ways. He frequently threw screaming fits in stores and I got stares and comments from shoppers and even drew the attentions of security a few times. I was frustrated, I felt like a failure as a parent and everyone around me seemed to feel like these were behavior problems that resulted from indulgent and inconsistent parenting on my part. I cried all the time, I tried everything and nothing worked and it seemed to be ineffective because Cole seemed to have a problem understanding certain things.
I ended up in a very dark place, I was depressed and isolated. Just remembering those years makes me emotional. I had this gut feeling something was very wrong with my son and I was afraid I had somehow caused it. I tried to help him but I could never reach him. He didn't hug me or say I love you, he wasn't affectionate at all. I was confused and hurt by that. I couldn't connect.
At 4 years old he went to a 4K program and we had to receive a home visit from his teachers. I had knots in my stomach during his first days of school, expecting DSS to show up at my door and ask me what I had done to my son to cause him to be so non-functional. The day the teachers were scheduled to arrive I was nervous, expecting admonishment and criticism. I was surprised to find them sympathetic and concerned. It was through them that I heard the word Autism for the first time.
To make a long story short, by the time he was 6 years old he was diagnosed with Autism, but I was still in the dark... completely. Now I had an answer as to why Cole behaved the way he did, but I had NO clue what to do to help him. I had lost 6 years in my mind, so I wanted to get him help right away and I didn't even know where to start. I called several agencies and got nowhere. Then I called Family Connection of SC and got Hollye Reid, who is now my good friend, on the phone.
Through Family Connection I learned to advocate and they gave me a starting point. I think the most invaluable thing they gave me though, was the realization that I wasn't alone and my son wasn't the only one. All those years I had felt isolated, ashamed, and at fault for Cole's issues and I finally realized that I really hadn't done anything wrong! I saw these other mothers, who were very kind and caring mothers, and they were dealing with the same issues. I can't begin to tell you the weight that was lifted off of me.
Those dark years and those feelings still haunt me at times, and I told myself that when I got strong enough that I would give back. I wanted to make sure that no mother ever has to feel the way I felt.
I have been given that opportunity now, working with Family Connection, to reach out to other families and parents who may be in that place. I want to be able to offer them a light too. I am not interested in the politics of the business. I want to help people and it is for that reason that I am writing this blog and telling my story.
I realize that there is a lot of need out there and very little to go around, but if you have the ability any donation you could make would make a huge difference in what we can do to bring families together and help children with special needs like Cole.
Donate To Family Connection of SC
I assumed maybe I was crazy, maybe all kids do stuff like this, and I am overreacting.
From 2 to 4 years old Cole seemed to be in his own world, he talked but a lot of times he didn't make sense. He would repeat phrases over and over and he called himself "You" instead of "Me" or "I." If you asked him "Do you want a cookie?" he replied "You want a cookie." instead of yes or no. I saw other children his age having conversations, but he didn't seem capable. I wondered, but his doctor didn't seem overly concerned, so again, I assumed that maybe I was making too much of it. He was talking after all and as the doctor pointed out, he had a large vocabulary.
He was also afraid of everything, lights, vents, fans, trash cans, noises, hands, eyes, and pipes. The world seemed to be a foreign place to him and the smallest thing seemed to send him spiraling into a meltdown that saw him banging his head or injuring himself in other ways. He frequently threw screaming fits in stores and I got stares and comments from shoppers and even drew the attentions of security a few times. I was frustrated, I felt like a failure as a parent and everyone around me seemed to feel like these were behavior problems that resulted from indulgent and inconsistent parenting on my part. I cried all the time, I tried everything and nothing worked and it seemed to be ineffective because Cole seemed to have a problem understanding certain things.
I ended up in a very dark place, I was depressed and isolated. Just remembering those years makes me emotional. I had this gut feeling something was very wrong with my son and I was afraid I had somehow caused it. I tried to help him but I could never reach him. He didn't hug me or say I love you, he wasn't affectionate at all. I was confused and hurt by that. I couldn't connect.
At 4 years old he went to a 4K program and we had to receive a home visit from his teachers. I had knots in my stomach during his first days of school, expecting DSS to show up at my door and ask me what I had done to my son to cause him to be so non-functional. The day the teachers were scheduled to arrive I was nervous, expecting admonishment and criticism. I was surprised to find them sympathetic and concerned. It was through them that I heard the word Autism for the first time.
To make a long story short, by the time he was 6 years old he was diagnosed with Autism, but I was still in the dark... completely. Now I had an answer as to why Cole behaved the way he did, but I had NO clue what to do to help him. I had lost 6 years in my mind, so I wanted to get him help right away and I didn't even know where to start. I called several agencies and got nowhere. Then I called Family Connection of SC and got Hollye Reid, who is now my good friend, on the phone.
Through Family Connection I learned to advocate and they gave me a starting point. I think the most invaluable thing they gave me though, was the realization that I wasn't alone and my son wasn't the only one. All those years I had felt isolated, ashamed, and at fault for Cole's issues and I finally realized that I really hadn't done anything wrong! I saw these other mothers, who were very kind and caring mothers, and they were dealing with the same issues. I can't begin to tell you the weight that was lifted off of me.
Those dark years and those feelings still haunt me at times, and I told myself that when I got strong enough that I would give back. I wanted to make sure that no mother ever has to feel the way I felt.
I have been given that opportunity now, working with Family Connection, to reach out to other families and parents who may be in that place. I want to be able to offer them a light too. I am not interested in the politics of the business. I want to help people and it is for that reason that I am writing this blog and telling my story.
I realize that there is a lot of need out there and very little to go around, but if you have the ability any donation you could make would make a huge difference in what we can do to bring families together and help children with special needs like Cole.
Donate To Family Connection of SC
Thursday, June 21, 2012
The Medicated Child
I love documentaries, I prefer documentaries over movies any day. I am well aware that this makes me a giant geek. I can live with that. I sometimes watch them and it presents a new argument and a way of thinking I hadn't considered before, I both love and hate when that happens. I love it because knowledge is the single most valuable thing you can attain and I hate it because then I have to re-evaluate everything I had once thought.
Two nights ago I watched Frontline's: The Medicated Child and it was frightening. It's no secret that kids today are medicated more than we were as kids. I'd even make the argument that a lot of kids are over medicated, but to see a FOUR year old on Clonidine , Resperidone, and Trileptal among others is just...terrifying. I wanted to reserve my judgement though, I am a parent of a child with a severe mental illness and I know that can be exceedingly hard to treat. The scene that blew me away (I even rewound it to make sure I heard it right) was when the mother of this four year old was in the psychiatrist's office specifically to ask if there was something besides medication she could be doing to help her son. He said no. Unbelievable. It only gets worse from there. She explains that he is doing OK, but has a lot of anxiety about going to school. He is fine as soon as he gets in the door, it's just getting him there that's the problem. He throws a tantrum for about two hours. When you've got a mentally-ill kid the word "tantrum" doesn't do it justice, but the bottom line is he was exhibiting behaviors that would indicate the transition from home to school was difficult for him. I'd be looking for a Behavioral Interventionist and try to pinpoint what in the environment is setting him off. Nothing we do is completely random, no matter how severely ill the child is the behavior always serves a purpose. I am waiting for the psychiatrist to say something along those lines, but he didn't even bother to ask a single question about why the child would be throwing a fit. He suggested Xanax. I about fell over. I told Josh "This kid's brain is going to be soup before he hits 5 years old!" So mom came in hoping to get alternatives to medication and walked out with another perscription.
Welcome to the wonderful world of child psychiatry.
As parents we are the bottom line, but I think we put too much trust in professionals and ignore our gut instincts. We aren't experts after all, who are we to argue how to treat a mental illness? The fact of the matter is that there really is no expert, psychiatry and psychology isn't a science like the rest of medicine and if you ask 3 different psychiatrists about one symptom you are going to get 3 different opinions. It isn't like when you go to the doctor with a sore throat, they do a swab, diagnose you with Strep and prescribe an antibiotic to make you better. That's cut and dry. Mental illness, especially in children is anything but cut and dry.
I am not anti-medication, Cole is on three different medications to control his OCD and ADHD symptoms. I feel like he needs them. It took me a while to realize that when you go to a psychiatrist you are going for medication and most of them will dole it out unabashedly. I went to one doctor who wrote Cole five prescriptions after a 15 minute "evaluation" in which he never even spoke to Cole! You just don't mention symptoms to a psychiatrist unless you want a medication for them.
Cole is on a medication called Methylphenidate, otherwise known as Ritalin. He has developed motor tics and so I just really don't like this medication... but he is hyper personified without it. I decided to take him off of it for the summer, to see if the tics improved. 50% of people with OCD have tics as do about 50% of people with ADHD. Cole has a diagnosis of both, plus tics are a side effect of the medication. That leaves us with a tangled mess to unravel. Stopping the meds to see if the tics stop seems a logical first step.
He is driving me INSANE. He laughs like a maniac, spins, flips, makes noises, and literally acts like a kid that is on speed, crack, and meth combined. Two days before I watched the documentary I cracked and called his psychiatrist's office and asked for a refill. The change in him when he is off the medication is notable, he lacks impulse control and has zero tolerance for frustrating situations. He has the attention span of a 2 year old. He melted down during his social skills class and I had to come get him. I am a hard-ass, I want him to deal and I won't allow escape from situations when he has behaviors. I am torn between the behavioral approach and the medication approach. I am left feeling like the medication is the easy out. Is it? Could I be doing more? I guess more research needs to follow. I am always researching and then scaring the life out of myself.
To make matters worse, I know Aiden has ADHD. How could he not have something? I have multiple diagnoses including ADHD and his dad is no stranger to psychiatric labels. Aiden is 4 and while friends and family have mentioned many times that he is hyper, oppositional, difficult, and so on to a degree that isn't exactly normal... I still don't want a diagnosis. Am I in denial? Am I a bad parent? Would medication help him get into less trouble and enjoy life more or is it just to make my life easier? I go back and forth in my head. Chloe has ADD (the teacher's at the school made that abundantly clear many times) I do see an improvement with medication, but there is an increase in focus when college students take these meds illegally to cram for exams...it doesn't mean they lacked focus to begin with. I don't want her medicated, I want the school to accommodate her needs. I also don't want to hold her back from achieving her full potential. It's a slippery slope and as a parent you just have to make sure you get a good grip on every bit of information available to you.
I think parents need to have more information about mental health before they are able to make decisions about medicating young children. They need to know the research that's been done and the controversy that's out there. I think too often they assume it's well-known because the doctors seem quite sure. Psychiatrists should be more aware of alternatives to medications and they should prescribe medication with extreme caution in situations where the illness is terribly severe or other approaches have failed. We should be asking more "why" questions, both as parents and physicians.
Two nights ago I watched Frontline's: The Medicated Child and it was frightening. It's no secret that kids today are medicated more than we were as kids. I'd even make the argument that a lot of kids are over medicated, but to see a FOUR year old on Clonidine , Resperidone, and Trileptal among others is just...terrifying. I wanted to reserve my judgement though, I am a parent of a child with a severe mental illness and I know that can be exceedingly hard to treat. The scene that blew me away (I even rewound it to make sure I heard it right) was when the mother of this four year old was in the psychiatrist's office specifically to ask if there was something besides medication she could be doing to help her son. He said no. Unbelievable. It only gets worse from there. She explains that he is doing OK, but has a lot of anxiety about going to school. He is fine as soon as he gets in the door, it's just getting him there that's the problem. He throws a tantrum for about two hours. When you've got a mentally-ill kid the word "tantrum" doesn't do it justice, but the bottom line is he was exhibiting behaviors that would indicate the transition from home to school was difficult for him. I'd be looking for a Behavioral Interventionist and try to pinpoint what in the environment is setting him off. Nothing we do is completely random, no matter how severely ill the child is the behavior always serves a purpose. I am waiting for the psychiatrist to say something along those lines, but he didn't even bother to ask a single question about why the child would be throwing a fit. He suggested Xanax. I about fell over. I told Josh "This kid's brain is going to be soup before he hits 5 years old!" So mom came in hoping to get alternatives to medication and walked out with another perscription.
Welcome to the wonderful world of child psychiatry.
As parents we are the bottom line, but I think we put too much trust in professionals and ignore our gut instincts. We aren't experts after all, who are we to argue how to treat a mental illness? The fact of the matter is that there really is no expert, psychiatry and psychology isn't a science like the rest of medicine and if you ask 3 different psychiatrists about one symptom you are going to get 3 different opinions. It isn't like when you go to the doctor with a sore throat, they do a swab, diagnose you with Strep and prescribe an antibiotic to make you better. That's cut and dry. Mental illness, especially in children is anything but cut and dry.
I am not anti-medication, Cole is on three different medications to control his OCD and ADHD symptoms. I feel like he needs them. It took me a while to realize that when you go to a psychiatrist you are going for medication and most of them will dole it out unabashedly. I went to one doctor who wrote Cole five prescriptions after a 15 minute "evaluation" in which he never even spoke to Cole! You just don't mention symptoms to a psychiatrist unless you want a medication for them.
Cole is on a medication called Methylphenidate, otherwise known as Ritalin. He has developed motor tics and so I just really don't like this medication... but he is hyper personified without it. I decided to take him off of it for the summer, to see if the tics improved. 50% of people with OCD have tics as do about 50% of people with ADHD. Cole has a diagnosis of both, plus tics are a side effect of the medication. That leaves us with a tangled mess to unravel. Stopping the meds to see if the tics stop seems a logical first step.
He is driving me INSANE. He laughs like a maniac, spins, flips, makes noises, and literally acts like a kid that is on speed, crack, and meth combined. Two days before I watched the documentary I cracked and called his psychiatrist's office and asked for a refill. The change in him when he is off the medication is notable, he lacks impulse control and has zero tolerance for frustrating situations. He has the attention span of a 2 year old. He melted down during his social skills class and I had to come get him. I am a hard-ass, I want him to deal and I won't allow escape from situations when he has behaviors. I am torn between the behavioral approach and the medication approach. I am left feeling like the medication is the easy out. Is it? Could I be doing more? I guess more research needs to follow. I am always researching and then scaring the life out of myself.
To make matters worse, I know Aiden has ADHD. How could he not have something? I have multiple diagnoses including ADHD and his dad is no stranger to psychiatric labels. Aiden is 4 and while friends and family have mentioned many times that he is hyper, oppositional, difficult, and so on to a degree that isn't exactly normal... I still don't want a diagnosis. Am I in denial? Am I a bad parent? Would medication help him get into less trouble and enjoy life more or is it just to make my life easier? I go back and forth in my head. Chloe has ADD (the teacher's at the school made that abundantly clear many times) I do see an improvement with medication, but there is an increase in focus when college students take these meds illegally to cram for exams...it doesn't mean they lacked focus to begin with. I don't want her medicated, I want the school to accommodate her needs. I also don't want to hold her back from achieving her full potential. It's a slippery slope and as a parent you just have to make sure you get a good grip on every bit of information available to you.
I think parents need to have more information about mental health before they are able to make decisions about medicating young children. They need to know the research that's been done and the controversy that's out there. I think too often they assume it's well-known because the doctors seem quite sure. Psychiatrists should be more aware of alternatives to medications and they should prescribe medication with extreme caution in situations where the illness is terribly severe or other approaches have failed. We should be asking more "why" questions, both as parents and physicians.
Monday, April 2, 2012
Epidemic Lies: The Autism/Vaccine Controversy
I have a huge problem with Jenny McCarthy. I have never cared for
her acting skills or her Playboy Centerfolds, and until she appeared on
the Oprah show spewing misinformation about Autism, I never really gave
her much thought. She didn’t let her lack of medical credentials stop
her from proclaiming the MMR vaccine causes Autism. The media gobbled it
up and regurgitated even more myths to the public. The media gave voice
to her cause and allowed the public to believe that she and her ilk
were fighting against greedy pharmaceutical companies for the lives of
their children. A conspiracy theory sells easily, and so the facts were essentially ignored in favor of a better “story”. The facts,
however, are an inescapable truth and they tell a much different story
than the one the media spins. There is absolutely no causal link between
any vaccine and Autism.
The whole debacle started when a Gastroenterologist named Dr. Andrew Wakefield published a study in a renowned British medical journal called The Lancet. In it he hypothesized that the measles virus could damage the intestinal wall, causing it to leak some unidentified protein. He then speculated this protein could somehow reach the brain and cause Autism. He postulated that the MMR vaccine introduced the virus into the bodies of the 12 children he studied and caused the neurological symptoms of Autism (qtd. in Hall). The theory is as stupid as it sounds when you explain it in layman’s terms, but all dressed up in scientific lingo it sounded a little better, maybe even plausible to desperate parents searching for answers. It was later discovered that he was funded by lawyers representing desperate parents who were suing vaccine makers. The parent’s claim was that the vaccine had caused their children’s Autism.
Dr. Wakefield’s egregious misconduct did not stop at taking bribes to reach scientific conclusions. He admitted to getting his blood samples from children at his son’s birthday party. Wakefield callously joked in public about the children crying, vomiting, and fainting as their blood was drawn. He did pay the children a small amount for their trouble. He also repeatedly subjected children to invasive procedures such as spinal taps and colonoscopies (Novella). He was desperate to link the MMR vaccine to Autism in some way.
When Dr. Wakefield’s tests for the measles RNA virus in the intestinal walls of his subjects came back negative he went ahead with the publication of the study, even though its conclusions had been effectively disproven by his own tests. His research assistant was incredulous, he asked that his name be removed from the paper and later testified against Dr. Wakefield (Hall, 27).
It didn’t take long for Dr. Wakefield to be exposed as a fraud. The Lancet retracted the study, calling it “fatally flawed,” and apologized for publishing it. Wakefield was forced to resign and an investigation into his conduct began (Novella). Credible scientists around the world breathed a collective sigh of relief as the media finally exposed Wakefield’s junk science. They must have been astonished at how little it affected the public’s perception of the vaccine/Autism correlation. The drab, bespectacled scientists who railed against the MMR as a cause for Autism were no match for Jenny McCarthy’s celebrity. Their conclusive epidemiological studies could not compete against Oprah. The public rarely reads medical journals, but millions watch daytime TV.
The lies and conspiracy theories continued to grow. What was once an easy case of a greedy doctor taking a bribe from greedy lawyers to produce research that will win the case has turned into a circus of controversy that won’t die. There is real danger in allowing the public to continue to believe that vaccines could cause Autism. We are beginning to see the real fallout from this lie in numerous areas around the US.
In 2008 the CDC reported an outbreak of measles in an under vaccinated area of San Diego, CA. One thousand people were exposed, 12 were seriously ill, and 73 people were quarantined. The CDC traced the outbreak back to an unvaccinated seven year old boy who had traveled abroad and brought the disease back with him (Harrism, 203). One unvaccinated child put nearly one thousand people at risk. It’s terrifying to think of the impact of thousands of unvaccinated people traveling unchecked could cause.
A growing number of parents are choosing not to vaccinate their children. The herd immunity, that once protected the vulnerable members of our society like newborns or the medically fragile, is being jeopardized. There is an epidemic looming on the horizon. The younger generations have never seen the devastation some of the vaccine preventable diseases can cause. My generation has never been trapped in an iron lung for months or watched helplessly as our infant died from Pertussis. It’s easier to refuse the vaccines when you have no personal experience with the disease they prevent. When you add the fear that the vaccine may cause and irreversible developmental disorder like Autism; parents feel the risks of vaccinating are too great.
We don’t live in a bubble. Making the decision not to vaccinate based on a disproven scientific study and the media’s false assertions, puts public health at risk. Dozens of studies have been done by reputable scientists around the world and the results are crystal clear. There is no link between Autism and vaccines. There is no link between Autism and any ingredient in vaccines (Madsen and Vestergaard, 846). Vaccines save countless lives and should be viewed as miracles of modern science. I hope this controversy can be laid to rest and we can focus on finding the real causes of Autism.
Works Cited
Hall, Harriet. “Vaccines and Autism: A Deadly Manufactroversy.” Skeptic 15.2 (2009): 26+.
General OneFile. Web. 10 Nov. 2010
Harrism, A., et al. “Outbreak of Measles in San Diego CA, January-February 2008 “Morbidity and
Mortality Weekly Report.” 57.8 (2008): 203-06. Print.
Madsen, Kreesten M., and Mogens Vestergaard. “MMR Vaccination and Autism: What is the evidence
for a causal association?” Current Opinion 27.12 (2004): 831. Academic Onefile. Web. 10 Nov.
2010
Novella, Steven, MD. Neurologica Blog: Your Daily Dose of Neuroscience, Skepticism, and Critical
Thinking. N.p. 22 Nov. 2010. Web. 22 Nov. 2010
“The Vaccine War.” Palfreman, Jon. Frontline. PBS. ETV, Rock Hill SC, 27 Apr. 2010. Web.
The whole debacle started when a Gastroenterologist named Dr. Andrew Wakefield published a study in a renowned British medical journal called The Lancet. In it he hypothesized that the measles virus could damage the intestinal wall, causing it to leak some unidentified protein. He then speculated this protein could somehow reach the brain and cause Autism. He postulated that the MMR vaccine introduced the virus into the bodies of the 12 children he studied and caused the neurological symptoms of Autism (qtd. in Hall). The theory is as stupid as it sounds when you explain it in layman’s terms, but all dressed up in scientific lingo it sounded a little better, maybe even plausible to desperate parents searching for answers. It was later discovered that he was funded by lawyers representing desperate parents who were suing vaccine makers. The parent’s claim was that the vaccine had caused their children’s Autism.
Dr. Wakefield’s egregious misconduct did not stop at taking bribes to reach scientific conclusions. He admitted to getting his blood samples from children at his son’s birthday party. Wakefield callously joked in public about the children crying, vomiting, and fainting as their blood was drawn. He did pay the children a small amount for their trouble. He also repeatedly subjected children to invasive procedures such as spinal taps and colonoscopies (Novella). He was desperate to link the MMR vaccine to Autism in some way.
When Dr. Wakefield’s tests for the measles RNA virus in the intestinal walls of his subjects came back negative he went ahead with the publication of the study, even though its conclusions had been effectively disproven by his own tests. His research assistant was incredulous, he asked that his name be removed from the paper and later testified against Dr. Wakefield (Hall, 27).
It didn’t take long for Dr. Wakefield to be exposed as a fraud. The Lancet retracted the study, calling it “fatally flawed,” and apologized for publishing it. Wakefield was forced to resign and an investigation into his conduct began (Novella). Credible scientists around the world breathed a collective sigh of relief as the media finally exposed Wakefield’s junk science. They must have been astonished at how little it affected the public’s perception of the vaccine/Autism correlation. The drab, bespectacled scientists who railed against the MMR as a cause for Autism were no match for Jenny McCarthy’s celebrity. Their conclusive epidemiological studies could not compete against Oprah. The public rarely reads medical journals, but millions watch daytime TV.
The lies and conspiracy theories continued to grow. What was once an easy case of a greedy doctor taking a bribe from greedy lawyers to produce research that will win the case has turned into a circus of controversy that won’t die. There is real danger in allowing the public to continue to believe that vaccines could cause Autism. We are beginning to see the real fallout from this lie in numerous areas around the US.
In 2008 the CDC reported an outbreak of measles in an under vaccinated area of San Diego, CA. One thousand people were exposed, 12 were seriously ill, and 73 people were quarantined. The CDC traced the outbreak back to an unvaccinated seven year old boy who had traveled abroad and brought the disease back with him (Harrism, 203). One unvaccinated child put nearly one thousand people at risk. It’s terrifying to think of the impact of thousands of unvaccinated people traveling unchecked could cause.
A growing number of parents are choosing not to vaccinate their children. The herd immunity, that once protected the vulnerable members of our society like newborns or the medically fragile, is being jeopardized. There is an epidemic looming on the horizon. The younger generations have never seen the devastation some of the vaccine preventable diseases can cause. My generation has never been trapped in an iron lung for months or watched helplessly as our infant died from Pertussis. It’s easier to refuse the vaccines when you have no personal experience with the disease they prevent. When you add the fear that the vaccine may cause and irreversible developmental disorder like Autism; parents feel the risks of vaccinating are too great.
We don’t live in a bubble. Making the decision not to vaccinate based on a disproven scientific study and the media’s false assertions, puts public health at risk. Dozens of studies have been done by reputable scientists around the world and the results are crystal clear. There is no link between Autism and vaccines. There is no link between Autism and any ingredient in vaccines (Madsen and Vestergaard, 846). Vaccines save countless lives and should be viewed as miracles of modern science. I hope this controversy can be laid to rest and we can focus on finding the real causes of Autism.
Works Cited
Hall, Harriet. “Vaccines and Autism: A Deadly Manufactroversy.” Skeptic 15.2 (2009): 26+.
General OneFile. Web. 10 Nov. 2010
Harrism, A., et al. “Outbreak of Measles in San Diego CA, January-February 2008 “Morbidity and
Mortality Weekly Report.” 57.8 (2008): 203-06. Print.
Madsen, Kreesten M., and Mogens Vestergaard. “MMR Vaccination and Autism: What is the evidence
for a causal association?” Current Opinion 27.12 (2004): 831. Academic Onefile. Web. 10 Nov.
2010
Novella, Steven, MD. Neurologica Blog: Your Daily Dose of Neuroscience, Skepticism, and Critical
Thinking. N.p. 22 Nov. 2010. Web. 22 Nov. 2010
“The Vaccine War.” Palfreman, Jon. Frontline. PBS. ETV, Rock Hill SC, 27 Apr. 2010. Web.
Sunday, February 26, 2012
Please Check your Religion at the Door
I guess I am officially "out of the closet." No, I am not gay, I am something that is infinitely worse in today's society. I am an Atheist.
I am probably more of an Agnostic Atheist, but that's splitting hairs. The bottom line is I don't believe in the God of Christianity. I don't discount the possibility of a spiritual afterlife completely because that can be neither proven or dis proven (there's the Agnostic point of view). One thing is absolute for me. God, as he is described in the Bible, does not exist.
I won't teach my children that God exists or that he loves them or that he created anything on this planet. This is a little hard to swallow for a lot of people and I understand that. We live in the South, where there is a church (sometimes two) on every block and they are always full on Sunday morning. My disbelief seems radical and out of place here.
But, I have a right to disbelieve just like Christians have a right to believe. I deserve the same respect.
I will teach my children to be tolerant of all people and religions, I will teach them to be respectful and not condescending or argumentative. I have told Cole and Chloe that religion is very precious to some people and it is hurtful to criticize or tell people that they are silly or wrong. I find it very hard, however, to get them to understand this when Christians are constantly telling them (and me) that we are wrong. My mother saw fit to tell my son all about God. She also saw fit to tell him I was wrong. Her excuse is it is her belief that she dictates she must "spread the word."
You spread the word to me and you open up the door for me to pick "the word" apart. I will never, ever, go out looking for an argument about religion but if you bring one to my doorstep I will say what I think and it may be offensive to you.
This is the same for my children. If they are confronted by a child who says that they are wrong for not believing in God, then that child is going to hear the reasons why they don't believe. It's only fair. I get most irritated when people tell my mentally-ill and Autistic son that there is some horrible creature called "the devil" that will get him if he doesn't believe in God.
What if I walked up to your 9 year old and told them that a horrible beast was going to come out of their closest and snatch them up and torture them for eternity if they didn't believe the way I do? You would be incredibly angry, you would feel I had overstepped my bounds and walked all over your right to teach your own child your beliefs, and I scared the poor kid to death in the process.
Why is it ok to do that to me and my kids?
I have friends that I love and respect who are Christians. I am trying very hard to contain my anger because I would never want to say anything that would be offensive to them. I have had a number of experiences this week that have made it hard for me to remain ambiguous about my beliefs. My close friends know me, they know what I think and they are respectful of that. My own family seems to want to step on my toes.
For Cole, religion is harmful. Period. It's a bad thing for him. It teaches thoughts are the same as actions and you are as responsible for bad thoughts as you are bad actions. Cole has OCD and this condition is largely defined by intrusive and unwanted bad thoughts that he can't control. We now know there is an organ in our body that controls thought processes and it can be damaged or genetic factors can contribute to a malfunction. It's no one's fault.
Psychologists call it thought-action fusion. It's the FALSE belief that thoughts are the same as actions. Realizing this is a key step in recovering from OCD. We also frown upon magical thinking. It's not really conducive to conquering OCD. We focus on logic, rationality, and accepting the limits of our own knowledge and control. Religion is the exact opposite of most of these concepts. It throws him backwards.
I walked into his room the other day to find him feverishly sorting things and extremely anxious. We finally got down to the root of his anxiety. A conversation with my mom about God.
"Mom. why did God give me OCD if he loves me?" he asked me. I gave him the best answer I knew how. I told him no God that really exists would watch such a sweet child suffer so needlessly without intervening if he had the power. I believe that.
I am telling friends and family. Religion isn't helpful for us, it isn't constructive and in some cases it interferes with the beneficial therapeutic process. Please, check your religion at the door and I'll leave my Atheist views right there beside it and we can focus on the things we do have in common.
I am probably more of an Agnostic Atheist, but that's splitting hairs. The bottom line is I don't believe in the God of Christianity. I don't discount the possibility of a spiritual afterlife completely because that can be neither proven or dis proven (there's the Agnostic point of view). One thing is absolute for me. God, as he is described in the Bible, does not exist.
I won't teach my children that God exists or that he loves them or that he created anything on this planet. This is a little hard to swallow for a lot of people and I understand that. We live in the South, where there is a church (sometimes two) on every block and they are always full on Sunday morning. My disbelief seems radical and out of place here.
But, I have a right to disbelieve just like Christians have a right to believe. I deserve the same respect.
I will teach my children to be tolerant of all people and religions, I will teach them to be respectful and not condescending or argumentative. I have told Cole and Chloe that religion is very precious to some people and it is hurtful to criticize or tell people that they are silly or wrong. I find it very hard, however, to get them to understand this when Christians are constantly telling them (and me) that we are wrong. My mother saw fit to tell my son all about God. She also saw fit to tell him I was wrong. Her excuse is it is her belief that she dictates she must "spread the word."
You spread the word to me and you open up the door for me to pick "the word" apart. I will never, ever, go out looking for an argument about religion but if you bring one to my doorstep I will say what I think and it may be offensive to you.
This is the same for my children. If they are confronted by a child who says that they are wrong for not believing in God, then that child is going to hear the reasons why they don't believe. It's only fair. I get most irritated when people tell my mentally-ill and Autistic son that there is some horrible creature called "the devil" that will get him if he doesn't believe in God.
What if I walked up to your 9 year old and told them that a horrible beast was going to come out of their closest and snatch them up and torture them for eternity if they didn't believe the way I do? You would be incredibly angry, you would feel I had overstepped my bounds and walked all over your right to teach your own child your beliefs, and I scared the poor kid to death in the process.
Why is it ok to do that to me and my kids?
I have friends that I love and respect who are Christians. I am trying very hard to contain my anger because I would never want to say anything that would be offensive to them. I have had a number of experiences this week that have made it hard for me to remain ambiguous about my beliefs. My close friends know me, they know what I think and they are respectful of that. My own family seems to want to step on my toes.
For Cole, religion is harmful. Period. It's a bad thing for him. It teaches thoughts are the same as actions and you are as responsible for bad thoughts as you are bad actions. Cole has OCD and this condition is largely defined by intrusive and unwanted bad thoughts that he can't control. We now know there is an organ in our body that controls thought processes and it can be damaged or genetic factors can contribute to a malfunction. It's no one's fault.
Psychologists call it thought-action fusion. It's the FALSE belief that thoughts are the same as actions. Realizing this is a key step in recovering from OCD. We also frown upon magical thinking. It's not really conducive to conquering OCD. We focus on logic, rationality, and accepting the limits of our own knowledge and control. Religion is the exact opposite of most of these concepts. It throws him backwards.
I walked into his room the other day to find him feverishly sorting things and extremely anxious. We finally got down to the root of his anxiety. A conversation with my mom about God.
"Mom. why did God give me OCD if he loves me?" he asked me. I gave him the best answer I knew how. I told him no God that really exists would watch such a sweet child suffer so needlessly without intervening if he had the power. I believe that.
I am telling friends and family. Religion isn't helpful for us, it isn't constructive and in some cases it interferes with the beneficial therapeutic process. Please, check your religion at the door and I'll leave my Atheist views right there beside it and we can focus on the things we do have in common.
Sunday, February 19, 2012
Reflecting & Hoping
It has been one hell of a year.
I realized I haven't taken a single moment in all this time to really reflect on what I've been through. I just dealt with it.
We had a meeting with a new school, we talked about putting Cole and Chloe back in public school. Aiden will start next year too. I left hopeful, that the kids could return to school, Cole could be in a regular classroom (with supports, of course) and Aiden could start his kindergarten year with his friends.
We might actually be able to return to some semblance of "normal."
For some reason that realization just opened the flood gates. I felt overjoyed, drained, and emotional. I came home from that meeting exhausted. A giant weight had been lifted, but the fatigue of carrying it for so long hit me hard. I laid down and slept. I slept for fourteen hours.
Almost a year ago Cole was inpatient at a psychiatric facility for children. He spent fifteen days being evaluated by doctors, therapists, and social workers. I was told he was acutely psychotic and likely Schizophrenic. They don't typically diagnose children with Schizophrenia so we got an even more ambiguous label: Psychosis-NOS (not otherwise specified). The psychiatrist overseeing Cole's case said he was unusual, complex, and unlike any patient he'd seen. He wasn't solid on anything, there didn't seem to be a name for what was attacking my son's mind.
I worried about Aiden and Chloe. Could Cole be dangerous? I worried about my unborn baby, I didn't know what kind of home life she would be brought into. Chloe and Aiden still needed me, I wanted to be there for them and so I couldn't spend every moment at the hospital. I felt torn. Part of me felt glad that Chloe and Aiden would get a taste of "normal family life." The other part of me felt terrible for feeling that way.
We got reports everyday that he was paranoid, agitated, and experiencing auditory hallucinations. Every time we gave the go ahead to increase the powerful anti-psychotics they were giving him. I felt like I was killing him. I felt like it was a choice between poisoning his body or letting him lose his mind. I am not unfamiliar with the devastation Schizophrenia can cause. To leave it unchecked would be a death sentence.
Then he developed EPS as a side effect of the medications they were giving him. They told me when I came to visit him that I could not see him because of the state he was in. There was no way in hell my child was going to go through that without his mother. I demanded to see him and they nurse eventually led me to his room.
There I saw him, his head and face pulled to one side and his body seemed rigid. He was crying, in the dark, alone. The nurse informed me that they had given him sedatives but he was "fighting them" and "wouldn't calm down." I sat with him and stroked his hair and sang to him. When he drifted off into a fitful sleep, I cried. The pain of seeing him like that, knowing that this could be what he was facing for the rest of his life was too much. I felt hopeless.
When he was released he didn't seem to have improved very much. The medication had taken the "edge off" but even the day of his release he was described as being "extremely anxious." Insurance was done paying so they were done treating. We took him home.
Two weeks later he had a follow-up with a new psychiatrist. I had really become jaded when it came to the mental health profession, so I wasn't expecting much. The doctor seemed very straight forward if not a bit detached. He asked a lot of questions and typed vigorously on his computer as we answered. I was annoyed, I felt like he wasn't really paying attention. As we were wrapping up he said in his very even, matter of fact, tone "Mrs. Patterson, I do not believe your son is psychotic. I know I have only met him once so I am reserving my judgement for now, but I believe your son has Obsessive Compulsive Disorder."
"Yeah, right." was all I could think. I have OCD and I felt like I would recognize it in my own child. I am not one to ever dismiss anything and so I started to research OCD in children. Some of it fit, he was extreme, but it did fit. There might be hope after all.
Now, let me get this straight, no parent wishes any illness on their child but if you were told your child had a progressive tumor in their brain you would be devastated, you would hope it was treatable. Being told your child has Schizophrenia is like being told your child has an inoperable tumor, the prognosis is guarded and there isn't much doctors can do but medicate. Being told Cole had OCD was like being told this tumor is operable, it's treatable and there's hope for recovery.
He ended up being hospitalized again, for another fifteen days before finally receiving a definitive diagnosis of OCD. That hospitalization was the worst for me emotionally. The hospital was a state hospital two hours away and it embodied everything people fear and associate with a 1950's asylum. I wanted him out and taken to another hospital in Charlotte. They refused and a battle ensued. I got a lawyer, filed complaints about the inappropriate conduct of the staff and the terrible conditions at the hospital (the A/C was broken in the middle of June). I was terrified I had somehow lost my son to the system. It was like a horror movie. I was stripped of my right to make medical decisions for my own child. Cole was kept past the 24 hour observation period allowed by the state and they have yet to produce the required affidavits to show the need to keep him longer. They saw two types of insurance and payment in-full for every day they kept my son. They saw dollar signs. It's a battle I am still fighting. To make sure his continued stay wouldn't benefit them monetarily, I retracted the documents I signed granting them permission to bill insurance. Without the ability to bill my insurance, the bill was left for me to pay. I told them I would never pay it. They'd have to transfer him or provide the services for free. They chose the latter. I spent every single day of those fifteen days wrought with anxiety. I still had two children to care for, so I shoved it aside. Stealing quiet moments when the kids were at school to fall apart.
The only good thing that came out of the debacle was a much less devastating diagnosis of OCD and no more terrifyingly strong medications. I had a place to start, something I could do. Cognitive Behavioral Therapy. Intensively.
The months that followed were trying. There were frequent meltdowns, Cole couldn't function well at school and the principal didn't feel they could provide enough support for him at her school. He was transferred to a school and put in a class where he was threatened and assaulted. Meanwhile, Chloe's teacher couldn't wrap her head around the concept of ADD (repeatedly sending "concerned emails" about Chloe being distracted) and even had the audacity to ask "Is something going on at home?" I just had to shake my head. It was like they expected me to somehow prevent this upheaval going on at home from affecting Chloe's school performance. They stopped short of actually providing HER with extra supports or free school based therapy, though.
Then it culminated in the decision to homeschool. Literally days after giving birth I was faced with having to find a curriculum and teach third grade. It was that or risk my son's safety while I battled the school district. I was so tired of fighting.
So I homeschooled and worked on doing exposures and CBT therapy every day. Cole went through several therapists before he got the one he is with now. She is truly a god send. With her help he slowly started to progress. Chloe started to progress too, she focused on learning the skills to deal with her ADD. I felt like a round the clock therapist. Everyday felt like climbing a mountain, and I longed for the "normal" mom duties, like baking cookies or attending PTO meetings. I felt awful sending Aiden to school while I poured so much effort into Cole and Chloe. I tried to bounce back and forth between teaching and caring for Autumn. I felt bitter about not having the first few weeks to spend just cuddling my newborn. It just wasn't supposed to be this way.
It was a lot of pressure. It was like spending a year in a pressure cooker.
Today Cole still has OCD and it creeps up sometimes, but he handles it. He is the strongest kid I know. Even at the hospital the staff told me they loved Cole. His therapist says she wants to try so hard for him because he really gives it his all. He wants to fight, improve, and live a happy life. Despite the extraordinary difficulty he has been through he is not the least bit bitter. He takes it all in stride. He has incredible insight and intelligence.
What means the most to me though, is that I see him smile and joke a lot more now. I see him planning on swimming this summer (something he wouldn't do last summer because his OCD left him terrified he might make others sick by getting in the water with them.) I see him getting stronger than the illness. I see that he is ready to make steps towards a future that a year ago I was told he didn't have.
Starting back to school is a step in this direction.
Chloe and Aiden get to make a step too, they get a chance to live outside the shadow of their brother's struggles. I have a lot of work to do to make up for the time they were cheated out of because of OCD.
Autumn might get the chance to sit on my knee and wave "bye, bye" as her brother's and sisters board the bus for school and then be mommy's baby for a little while. It seems so simple, but it would be so wonderful.
I am cautiously optimistic that things are going to be ok. That we won't be held hostage by severe mental illness any longer. Maybe, just maybe, we have won.
I realized I haven't taken a single moment in all this time to really reflect on what I've been through. I just dealt with it.
We had a meeting with a new school, we talked about putting Cole and Chloe back in public school. Aiden will start next year too. I left hopeful, that the kids could return to school, Cole could be in a regular classroom (with supports, of course) and Aiden could start his kindergarten year with his friends.
We might actually be able to return to some semblance of "normal."
For some reason that realization just opened the flood gates. I felt overjoyed, drained, and emotional. I came home from that meeting exhausted. A giant weight had been lifted, but the fatigue of carrying it for so long hit me hard. I laid down and slept. I slept for fourteen hours.
Almost a year ago Cole was inpatient at a psychiatric facility for children. He spent fifteen days being evaluated by doctors, therapists, and social workers. I was told he was acutely psychotic and likely Schizophrenic. They don't typically diagnose children with Schizophrenia so we got an even more ambiguous label: Psychosis-NOS (not otherwise specified). The psychiatrist overseeing Cole's case said he was unusual, complex, and unlike any patient he'd seen. He wasn't solid on anything, there didn't seem to be a name for what was attacking my son's mind.
I worried about Aiden and Chloe. Could Cole be dangerous? I worried about my unborn baby, I didn't know what kind of home life she would be brought into. Chloe and Aiden still needed me, I wanted to be there for them and so I couldn't spend every moment at the hospital. I felt torn. Part of me felt glad that Chloe and Aiden would get a taste of "normal family life." The other part of me felt terrible for feeling that way.
We got reports everyday that he was paranoid, agitated, and experiencing auditory hallucinations. Every time we gave the go ahead to increase the powerful anti-psychotics they were giving him. I felt like I was killing him. I felt like it was a choice between poisoning his body or letting him lose his mind. I am not unfamiliar with the devastation Schizophrenia can cause. To leave it unchecked would be a death sentence.
Then he developed EPS as a side effect of the medications they were giving him. They told me when I came to visit him that I could not see him because of the state he was in. There was no way in hell my child was going to go through that without his mother. I demanded to see him and they nurse eventually led me to his room.
There I saw him, his head and face pulled to one side and his body seemed rigid. He was crying, in the dark, alone. The nurse informed me that they had given him sedatives but he was "fighting them" and "wouldn't calm down." I sat with him and stroked his hair and sang to him. When he drifted off into a fitful sleep, I cried. The pain of seeing him like that, knowing that this could be what he was facing for the rest of his life was too much. I felt hopeless.
When he was released he didn't seem to have improved very much. The medication had taken the "edge off" but even the day of his release he was described as being "extremely anxious." Insurance was done paying so they were done treating. We took him home.
Two weeks later he had a follow-up with a new psychiatrist. I had really become jaded when it came to the mental health profession, so I wasn't expecting much. The doctor seemed very straight forward if not a bit detached. He asked a lot of questions and typed vigorously on his computer as we answered. I was annoyed, I felt like he wasn't really paying attention. As we were wrapping up he said in his very even, matter of fact, tone "Mrs. Patterson, I do not believe your son is psychotic. I know I have only met him once so I am reserving my judgement for now, but I believe your son has Obsessive Compulsive Disorder."
"Yeah, right." was all I could think. I have OCD and I felt like I would recognize it in my own child. I am not one to ever dismiss anything and so I started to research OCD in children. Some of it fit, he was extreme, but it did fit. There might be hope after all.
Now, let me get this straight, no parent wishes any illness on their child but if you were told your child had a progressive tumor in their brain you would be devastated, you would hope it was treatable. Being told your child has Schizophrenia is like being told your child has an inoperable tumor, the prognosis is guarded and there isn't much doctors can do but medicate. Being told Cole had OCD was like being told this tumor is operable, it's treatable and there's hope for recovery.
He ended up being hospitalized again, for another fifteen days before finally receiving a definitive diagnosis of OCD. That hospitalization was the worst for me emotionally. The hospital was a state hospital two hours away and it embodied everything people fear and associate with a 1950's asylum. I wanted him out and taken to another hospital in Charlotte. They refused and a battle ensued. I got a lawyer, filed complaints about the inappropriate conduct of the staff and the terrible conditions at the hospital (the A/C was broken in the middle of June). I was terrified I had somehow lost my son to the system. It was like a horror movie. I was stripped of my right to make medical decisions for my own child. Cole was kept past the 24 hour observation period allowed by the state and they have yet to produce the required affidavits to show the need to keep him longer. They saw two types of insurance and payment in-full for every day they kept my son. They saw dollar signs. It's a battle I am still fighting. To make sure his continued stay wouldn't benefit them monetarily, I retracted the documents I signed granting them permission to bill insurance. Without the ability to bill my insurance, the bill was left for me to pay. I told them I would never pay it. They'd have to transfer him or provide the services for free. They chose the latter. I spent every single day of those fifteen days wrought with anxiety. I still had two children to care for, so I shoved it aside. Stealing quiet moments when the kids were at school to fall apart.
The only good thing that came out of the debacle was a much less devastating diagnosis of OCD and no more terrifyingly strong medications. I had a place to start, something I could do. Cognitive Behavioral Therapy. Intensively.
The months that followed were trying. There were frequent meltdowns, Cole couldn't function well at school and the principal didn't feel they could provide enough support for him at her school. He was transferred to a school and put in a class where he was threatened and assaulted. Meanwhile, Chloe's teacher couldn't wrap her head around the concept of ADD (repeatedly sending "concerned emails" about Chloe being distracted) and even had the audacity to ask "Is something going on at home?" I just had to shake my head. It was like they expected me to somehow prevent this upheaval going on at home from affecting Chloe's school performance. They stopped short of actually providing HER with extra supports or free school based therapy, though.
Then it culminated in the decision to homeschool. Literally days after giving birth I was faced with having to find a curriculum and teach third grade. It was that or risk my son's safety while I battled the school district. I was so tired of fighting.
So I homeschooled and worked on doing exposures and CBT therapy every day. Cole went through several therapists before he got the one he is with now. She is truly a god send. With her help he slowly started to progress. Chloe started to progress too, she focused on learning the skills to deal with her ADD. I felt like a round the clock therapist. Everyday felt like climbing a mountain, and I longed for the "normal" mom duties, like baking cookies or attending PTO meetings. I felt awful sending Aiden to school while I poured so much effort into Cole and Chloe. I tried to bounce back and forth between teaching and caring for Autumn. I felt bitter about not having the first few weeks to spend just cuddling my newborn. It just wasn't supposed to be this way.
It was a lot of pressure. It was like spending a year in a pressure cooker.
Today Cole still has OCD and it creeps up sometimes, but he handles it. He is the strongest kid I know. Even at the hospital the staff told me they loved Cole. His therapist says she wants to try so hard for him because he really gives it his all. He wants to fight, improve, and live a happy life. Despite the extraordinary difficulty he has been through he is not the least bit bitter. He takes it all in stride. He has incredible insight and intelligence.
What means the most to me though, is that I see him smile and joke a lot more now. I see him planning on swimming this summer (something he wouldn't do last summer because his OCD left him terrified he might make others sick by getting in the water with them.) I see him getting stronger than the illness. I see that he is ready to make steps towards a future that a year ago I was told he didn't have.
Starting back to school is a step in this direction.
Chloe and Aiden get to make a step too, they get a chance to live outside the shadow of their brother's struggles. I have a lot of work to do to make up for the time they were cheated out of because of OCD.
Autumn might get the chance to sit on my knee and wave "bye, bye" as her brother's and sisters board the bus for school and then be mommy's baby for a little while. It seems so simple, but it would be so wonderful.
I am cautiously optimistic that things are going to be ok. That we won't be held hostage by severe mental illness any longer. Maybe, just maybe, we have won.
Friday, February 10, 2012
Thoughts on Mental Illness
This is on my facebook notes, today I ran across a situation and it reminded me that I had written this and wanted to share it on here:
We like to think we are in control of ourselves. We like to think that we control the thoughts in our minds and our perceptions of the world around us. It gives us comfort to assume we can “talk ourselves” out of bad feelings or that “positive thinking” can turn our lives around. It all comes back around to the idea that our minds belong to us and we decide what to do with them. The thought that our mind is a series of electrical impulses and carefully balanced chemical reactions, which could be thrown off by something as simple as a bump on the head, is just too scary to fathom. We don’t like the notion that we could “lose our minds”, as if they were ever really ours to begin with. Perhaps this is why we shun those who are unfortunate enough to suffer with diseases that rob them of the illusion of control we value so much.
A successful artist, with such a love for others that he volunteers as an art teacher for troubled youth and patiently teaches them to love and embrace the good things in life, gets into a automobile accident. During the accident he receives a blow to his head damaging his frontal cortex. As he recovers he is no longer able to create works of art, he has a hard time forming a concept for a painting, much less putting it on canvas. He frequently destroys his art supplies in fits of rage and frustration and he was asked to step down from his volunteer position because he made lewd comments to the female youth and was often incoherent and confusing when trying to give instruction. He is shunned by his friends who now think he is impulsive and rude and no longer has a way to make a living. His life and personality were changed by one fateful blow to the brain.
Imagine now that it wasn’t a car accident that damaged this artist’s brain, imagine it was a slow insidious change in personality. This is the way many mental illnesses attack the brain. Instead of a jarring blow there are neurotransmitters and chemicals thrown out of whack. It is hard to try to imagine how it would feel, but in order to understand the disease we must try. At first, your senses may begin to change, you notice things becoming brighter, and perhaps they even begin to glow. You feel euphoric and enlightened and with every sensation around seemingly so amplified you feel this must be something divine. You feel an intense need to share this message of love and divinity with everyone you see. God is sending you a message, what else could it be? Other people don’t seem to believe you and you hear an audible voice tell you that they are demonic and there to prevent you from spreading your message. You mistake their confused and concerned stares for menacing ones and begin to suspect they are planning something. You hear the hushed whispers about finding you help and assume it is a plot to poison you. That is what the now ever present voice in your head screams at you every day. You stop eating and take your family’s insistence that you eat something as more evidence that they are trying to hurt you. Eventually the voices began to tell you that there are cameras everywhere. You see them too, the once harmless blinking light on your radio, how could you have not noticed that it was obviously a camera watching you? You feel duped and betrayed. You vow to trust no one. You go through the house and smash all the electronic devices. This will teach them that they can’t outsmart you! When your family finally calls the police to have you taken to get help your every suspicion is confirmed. They were plotting against you and now they have gotten you. You are terrified; the voices are telling you that if you don’t get away they will hurt you so you fight with all your might.
There are millions of people who go through ordeals like this every day. They are of all ages, socioeconomic statuses, and levels of intelligence. The sad and scary fact is that in a lot of mental illnesses; reasoning ability and insight is the first executive function to go, leaving you vunerable to the illogical whims of a diseased mind. We squirm at the thought that we could one day wake up and truly believe we are the Messiah. It is a function of your brain that allows you to logically process the evidence that you are not. We are all potentially a few imbalanced chemicals away from a psychotic state. It is for this reason that I argue for understanding and empathy for those suffering with mental illness. No one would make the conscious choice to feel that way, to believe bizarre things, or behave in embarrassing ways, or to be thought of as lazy because there is no energy or drive there to get them out of bed. If there was a way to “think differently” and make it all go away those of us with mental illness would gladly think of puppies and beaches all day long and snap out of it. It doesn’t work that way. I want to quote a close family member of mine who suffers with a schizo affective disorder. He describes a time of deep depression where his friend suggested he try to get out of the house and do something he liked doing to make himself “feel better” He said “I don’t think she understands that that is precisely what is broken. My ability to feel anything but empty has been taken away, and a walk in the park won’t bring it back. It’s in my head, it’s like if you lost both your legs and someone said ‘you used to love to run, maybe running will make you happy’ you can’t when your legs are gone. I can’t when that part of my brain is messed up. There’s nothing anyone can do but take meds and pray it works.”
I hope someday people will try to understand mental illness. I hope we can jump into this century and rid of ourselves of the archaic notion that these diseases are the product of bad parenting or demonic forces. I hope we can view mental illness the same as we do any other biological ailment and stop placing blame. I hope those of us who suffer from these diseases can seek help in the light of day instead of trying to hide in the shadows, afraid of the stigma it carries and the jobs and friends we might lose. If enough people stand up and shed the shame and allow the world to see that the stereotypes are false, maybe change will happen in my lifetime.
We like to think we are in control of ourselves. We like to think that we control the thoughts in our minds and our perceptions of the world around us. It gives us comfort to assume we can “talk ourselves” out of bad feelings or that “positive thinking” can turn our lives around. It all comes back around to the idea that our minds belong to us and we decide what to do with them. The thought that our mind is a series of electrical impulses and carefully balanced chemical reactions, which could be thrown off by something as simple as a bump on the head, is just too scary to fathom. We don’t like the notion that we could “lose our minds”, as if they were ever really ours to begin with. Perhaps this is why we shun those who are unfortunate enough to suffer with diseases that rob them of the illusion of control we value so much.
A successful artist, with such a love for others that he volunteers as an art teacher for troubled youth and patiently teaches them to love and embrace the good things in life, gets into a automobile accident. During the accident he receives a blow to his head damaging his frontal cortex. As he recovers he is no longer able to create works of art, he has a hard time forming a concept for a painting, much less putting it on canvas. He frequently destroys his art supplies in fits of rage and frustration and he was asked to step down from his volunteer position because he made lewd comments to the female youth and was often incoherent and confusing when trying to give instruction. He is shunned by his friends who now think he is impulsive and rude and no longer has a way to make a living. His life and personality were changed by one fateful blow to the brain.
Imagine now that it wasn’t a car accident that damaged this artist’s brain, imagine it was a slow insidious change in personality. This is the way many mental illnesses attack the brain. Instead of a jarring blow there are neurotransmitters and chemicals thrown out of whack. It is hard to try to imagine how it would feel, but in order to understand the disease we must try. At first, your senses may begin to change, you notice things becoming brighter, and perhaps they even begin to glow. You feel euphoric and enlightened and with every sensation around seemingly so amplified you feel this must be something divine. You feel an intense need to share this message of love and divinity with everyone you see. God is sending you a message, what else could it be? Other people don’t seem to believe you and you hear an audible voice tell you that they are demonic and there to prevent you from spreading your message. You mistake their confused and concerned stares for menacing ones and begin to suspect they are planning something. You hear the hushed whispers about finding you help and assume it is a plot to poison you. That is what the now ever present voice in your head screams at you every day. You stop eating and take your family’s insistence that you eat something as more evidence that they are trying to hurt you. Eventually the voices began to tell you that there are cameras everywhere. You see them too, the once harmless blinking light on your radio, how could you have not noticed that it was obviously a camera watching you? You feel duped and betrayed. You vow to trust no one. You go through the house and smash all the electronic devices. This will teach them that they can’t outsmart you! When your family finally calls the police to have you taken to get help your every suspicion is confirmed. They were plotting against you and now they have gotten you. You are terrified; the voices are telling you that if you don’t get away they will hurt you so you fight with all your might.
There are millions of people who go through ordeals like this every day. They are of all ages, socioeconomic statuses, and levels of intelligence. The sad and scary fact is that in a lot of mental illnesses; reasoning ability and insight is the first executive function to go, leaving you vunerable to the illogical whims of a diseased mind. We squirm at the thought that we could one day wake up and truly believe we are the Messiah. It is a function of your brain that allows you to logically process the evidence that you are not. We are all potentially a few imbalanced chemicals away from a psychotic state. It is for this reason that I argue for understanding and empathy for those suffering with mental illness. No one would make the conscious choice to feel that way, to believe bizarre things, or behave in embarrassing ways, or to be thought of as lazy because there is no energy or drive there to get them out of bed. If there was a way to “think differently” and make it all go away those of us with mental illness would gladly think of puppies and beaches all day long and snap out of it. It doesn’t work that way. I want to quote a close family member of mine who suffers with a schizo affective disorder. He describes a time of deep depression where his friend suggested he try to get out of the house and do something he liked doing to make himself “feel better” He said “I don’t think she understands that that is precisely what is broken. My ability to feel anything but empty has been taken away, and a walk in the park won’t bring it back. It’s in my head, it’s like if you lost both your legs and someone said ‘you used to love to run, maybe running will make you happy’ you can’t when your legs are gone. I can’t when that part of my brain is messed up. There’s nothing anyone can do but take meds and pray it works.”
I hope someday people will try to understand mental illness. I hope we can jump into this century and rid of ourselves of the archaic notion that these diseases are the product of bad parenting or demonic forces. I hope we can view mental illness the same as we do any other biological ailment and stop placing blame. I hope those of us who suffer from these diseases can seek help in the light of day instead of trying to hide in the shadows, afraid of the stigma it carries and the jobs and friends we might lose. If enough people stand up and shed the shame and allow the world to see that the stereotypes are false, maybe change will happen in my lifetime.
Sunday, February 5, 2012
Relationships
I am going to have to admit that relationships remain a bit confusing to me. I am a deeply emotional person, but I am not particularly emotive. I don't like talking about feelings. Not because it's hard to talk about them, but because it seems absolutely useless to me. Rather than simply talking about how a problem makes you feel, why not put your mind to finding a solution? Negative feelings don't need to be discussed, negative feelings arise from situations or circumstances that need to be addressed and once that is done the feelings will improve. That is how I operate.
I am learning that most people think you are a cold person if you take that approach. People are supposed to talk about how they feel with each other for no other reason than to "let it out." Apparently, this allows another person to connect to you. No, I am not dumb and I understand that this seems like a fairly simple thing to grasp but it really has eluded me for a long time. I think I understood it on an intellectual level. I don't think I understood the purpose behind it or how someone makes an "emotional connection."
I have always been fascinated by psychology and the human mind and I read any book I could get my hands on about psychology. I gauge a social exchange based on what I have learned about human behavior. I am not kidding. There are instructions going through my mind ( make eye contact, now look away, make a joke now, laugh now, move your hands, no you are moving your hands too much you seem nervous, and etc.)
I think this is a maneuver that gives me a feeling of control. I am calculating this exchange and I am not really, truly, invested in it. I do this because I lack any real social skills and I have been told as much. Many times.
As a teenager it was amusing, tact and social ability didn't seem that important.It wasn't until I had children that I wanted to learn how to connect with people so my kids could have friends. I bombed repeatedly at developing friendships. I couldn't get past the superficial point in a relationship.
You see, I have observed that there is a certain unspoken point in any relationship where you take the proverbial "mask" off and be yourself. It took me awhile to learn that you had to put the mask on (and you do have to, no one want you to literally "be yourself" upon first meeting you, trust me.) This seems to be a natural part of any friendship or romance. There comes a point at which you don't say "I'm fine" when they ask how you are doing if it's not really fine. There comes a point where you can do, as Oprah calls it, the "ugly cry" on that person's shoulder and you don't seem like a nut. ( I have had people I just met break down into tears and it's quite uncomfortable, so I know there is a line there.)
I don't have the ability to sense when that's ok. I just stay on that safe superficial level with people. Most people don't think to tell you, "It's ok, we are friends now," because it's this thing that is supposedly just understood. I fail to pick up on it or I am over-analyzing it entirely.
I feel for Aspies, I can't imagine the frustration. I want people to feel as if I am a caring person, but I have trouble exhibiting the characteristics people associate with "caring people".
I really, really, suck at being "warm and friendly" and I wish I didn't. Lucky for me I do have friends now. I think it's ok to call them friends and they don't seem to mind my quirks or my occasional tactless remark.
With Valentine's Day around the corner I think I should try to work on expressing how much I care about the people in my life that mean the most to me. Josh and I have been together for 10 years and though he has accepted me as someone who isn't very romantic and cuddly, I think it's kind of unfair not to try to be more that way. People need to "feel" loved.
I am learning that most people think you are a cold person if you take that approach. People are supposed to talk about how they feel with each other for no other reason than to "let it out." Apparently, this allows another person to connect to you. No, I am not dumb and I understand that this seems like a fairly simple thing to grasp but it really has eluded me for a long time. I think I understood it on an intellectual level. I don't think I understood the purpose behind it or how someone makes an "emotional connection."
I have always been fascinated by psychology and the human mind and I read any book I could get my hands on about psychology. I gauge a social exchange based on what I have learned about human behavior. I am not kidding. There are instructions going through my mind ( make eye contact, now look away, make a joke now, laugh now, move your hands, no you are moving your hands too much you seem nervous, and etc.)
I think this is a maneuver that gives me a feeling of control. I am calculating this exchange and I am not really, truly, invested in it. I do this because I lack any real social skills and I have been told as much. Many times.
As a teenager it was amusing, tact and social ability didn't seem that important.It wasn't until I had children that I wanted to learn how to connect with people so my kids could have friends. I bombed repeatedly at developing friendships. I couldn't get past the superficial point in a relationship.
You see, I have observed that there is a certain unspoken point in any relationship where you take the proverbial "mask" off and be yourself. It took me awhile to learn that you had to put the mask on (and you do have to, no one want you to literally "be yourself" upon first meeting you, trust me.) This seems to be a natural part of any friendship or romance. There comes a point at which you don't say "I'm fine" when they ask how you are doing if it's not really fine. There comes a point where you can do, as Oprah calls it, the "ugly cry" on that person's shoulder and you don't seem like a nut. ( I have had people I just met break down into tears and it's quite uncomfortable, so I know there is a line there.)
I don't have the ability to sense when that's ok. I just stay on that safe superficial level with people. Most people don't think to tell you, "It's ok, we are friends now," because it's this thing that is supposedly just understood. I fail to pick up on it or I am over-analyzing it entirely.
I feel for Aspies, I can't imagine the frustration. I want people to feel as if I am a caring person, but I have trouble exhibiting the characteristics people associate with "caring people".
I really, really, suck at being "warm and friendly" and I wish I didn't. Lucky for me I do have friends now. I think it's ok to call them friends and they don't seem to mind my quirks or my occasional tactless remark.
With Valentine's Day around the corner I think I should try to work on expressing how much I care about the people in my life that mean the most to me. Josh and I have been together for 10 years and though he has accepted me as someone who isn't very romantic and cuddly, I think it's kind of unfair not to try to be more that way. People need to "feel" loved.
Saturday, January 21, 2012
Why Homeschool?
I feel stuck right now. I'm in that place where no option seems like a good option and so you find yourself weighing bad against worse trying to decide which path to take.
A little background, I started homeschooling Cole in November of this year because the public school system was failing him miserably. He was put in a class for "Emotionally Disturbed" children and the children in his class we extremely disturbed indeed. The method of discipline was to shut unruly children in a "quiet room", which was a tiny closet sized room with concrete walls and floor. The teacher pointed out to me that it was painted "soothing" colors, as if being locked in a soft aquamarine room as opposed to gray makes any damn difference at all. Cole is not an unruly child, in fact he is very concerned with following rules so he never was put into that room. I made it clear that he should NEVER be put in that room. Despite not being subjected to it directly, what he saw in that class was awful.
He described kids screaming and cussing, flipping their desks over, eating crayons, and being stripped of their shoes and shoved into this "quiet room" where they would continue to scream and beat against the walls. Once he came home and told me a kid removed his clothes and said he was going to "poop and pee" on the walls. Cole didn't know for sure if he did, but he said the janitor had to come in and clean the room after the child was removed. I was aghast. This wasn't an asylum in the 1950's... it was a public school classroom in the 20th century!
When one of these children began to threaten Cole with violence I became very worried. I complained, I called an IEP meeting, I called the superintendent, and I was met with complete indifference. No one cared that this child had threatened to beat up, even kill, my son. Not only was this kid a bully, he was a deeply disturbed bully and that worried me.
Three days after I gave birth to Autumn I got a phone call saying that this child had attempted to stab Cole with a pen. He was tackled by a teacher and teacher's aide and pulled off Cole before he could do more than graze Cole's arm. Cole came home shaking and nauseous from the stress. I was beyond angry. I was angry that no one seemed to have seen this coming and even after the child attacked Cole they still seemed to be completely indifferent. I called the police and they took a report but said there was nothing they could do because the child was mentally ill. The officer felt bad for me and called the school resource officer to see if there was anything more he could do. The resource officer knew this child by name and said he was dangerous. It was then I decided I was going to homeschool. I really felt I had no other choice.
I was totally unprepared, I had a baby who was less than a week old and it was several months into the school year. I had no curriculum and no game plan. I had an anxiety attack that lasted for a solid week as I gathered the documentation I needed to pull him out of public school. I like to have a plan of action for everything, I don't do spontaneous.
To add to the stress Chloe's teacher felt the need to tell me every single day that my daughter, who has classic ADHD, was not paying attention (Oh really? A child with attention deficit is displaying a deficit in attention? How could that be?) She had a 504 plan, which the school chose to lose first and then ignore. I couldn't balance trying to homeschool Cole and the constant requests from Chloe's teacher for meeting so that we could re-hash the fact that Chloe was displaying classic symptoms of ADHD. She was on meds which caused side-effects that the teacher then wrote me emails about (Chloe is "in a fog", Chloe "seems withdrawn") even the psychiatrist was annoyed. Those things are common side effects of the meds she was on, not a sign that there was something "going on" with Chloe. I hesitate to call any teacher stupid, but ... well. After explaining 5,456,789 times to this woman that meds are not a cure, and they come with their own drawbacks and she was going to HAVE to accommodate Chloe in other ways (i.e. help with note-taking skills, allow extra time to complete work, etc) I just decided to homeschool her too.
So here I am. I am SO frustrated with this, I cry just about everyday. I was woefully unprepared and I too have OCD and ADHD, so it's a case of the blind leading the blind. I feel like I am unable to focus and organize enough to be effective as a teacher. In one sense I can understand what they deal with better than anyone because I am dealing with it too. I have tried giving myself pep-talks and I have tried convincing myself they are learning despite the slooooow pace (welcome to OCD land, where everything moves in slow motion). It's a constant battle. I am so tired. I am stuck.
A little background, I started homeschooling Cole in November of this year because the public school system was failing him miserably. He was put in a class for "Emotionally Disturbed" children and the children in his class we extremely disturbed indeed. The method of discipline was to shut unruly children in a "quiet room", which was a tiny closet sized room with concrete walls and floor. The teacher pointed out to me that it was painted "soothing" colors, as if being locked in a soft aquamarine room as opposed to gray makes any damn difference at all. Cole is not an unruly child, in fact he is very concerned with following rules so he never was put into that room. I made it clear that he should NEVER be put in that room. Despite not being subjected to it directly, what he saw in that class was awful.
He described kids screaming and cussing, flipping their desks over, eating crayons, and being stripped of their shoes and shoved into this "quiet room" where they would continue to scream and beat against the walls. Once he came home and told me a kid removed his clothes and said he was going to "poop and pee" on the walls. Cole didn't know for sure if he did, but he said the janitor had to come in and clean the room after the child was removed. I was aghast. This wasn't an asylum in the 1950's... it was a public school classroom in the 20th century!
When one of these children began to threaten Cole with violence I became very worried. I complained, I called an IEP meeting, I called the superintendent, and I was met with complete indifference. No one cared that this child had threatened to beat up, even kill, my son. Not only was this kid a bully, he was a deeply disturbed bully and that worried me.
Three days after I gave birth to Autumn I got a phone call saying that this child had attempted to stab Cole with a pen. He was tackled by a teacher and teacher's aide and pulled off Cole before he could do more than graze Cole's arm. Cole came home shaking and nauseous from the stress. I was beyond angry. I was angry that no one seemed to have seen this coming and even after the child attacked Cole they still seemed to be completely indifferent. I called the police and they took a report but said there was nothing they could do because the child was mentally ill. The officer felt bad for me and called the school resource officer to see if there was anything more he could do. The resource officer knew this child by name and said he was dangerous. It was then I decided I was going to homeschool. I really felt I had no other choice.
I was totally unprepared, I had a baby who was less than a week old and it was several months into the school year. I had no curriculum and no game plan. I had an anxiety attack that lasted for a solid week as I gathered the documentation I needed to pull him out of public school. I like to have a plan of action for everything, I don't do spontaneous.
To add to the stress Chloe's teacher felt the need to tell me every single day that my daughter, who has classic ADHD, was not paying attention (Oh really? A child with attention deficit is displaying a deficit in attention? How could that be?) She had a 504 plan, which the school chose to lose first and then ignore. I couldn't balance trying to homeschool Cole and the constant requests from Chloe's teacher for meeting so that we could re-hash the fact that Chloe was displaying classic symptoms of ADHD. She was on meds which caused side-effects that the teacher then wrote me emails about (Chloe is "in a fog", Chloe "seems withdrawn") even the psychiatrist was annoyed. Those things are common side effects of the meds she was on, not a sign that there was something "going on" with Chloe. I hesitate to call any teacher stupid, but ... well. After explaining 5,456,789 times to this woman that meds are not a cure, and they come with their own drawbacks and she was going to HAVE to accommodate Chloe in other ways (i.e. help with note-taking skills, allow extra time to complete work, etc) I just decided to homeschool her too.
So here I am. I am SO frustrated with this, I cry just about everyday. I was woefully unprepared and I too have OCD and ADHD, so it's a case of the blind leading the blind. I feel like I am unable to focus and organize enough to be effective as a teacher. In one sense I can understand what they deal with better than anyone because I am dealing with it too. I have tried giving myself pep-talks and I have tried convincing myself they are learning despite the slooooow pace (welcome to OCD land, where everything moves in slow motion). It's a constant battle. I am so tired. I am stuck.
Monday, January 9, 2012
Motherhood is a gift
I became a mother for the first time at eighteen years old. My oldest son, Cole Bryant, was born on September 17th 2002. That day changed my life forever in so many ways, I think Elizabeth Stone said it best when she said: "Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body."
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~Rajneesh
When Cole was born I had all the hopes and dreams for him that every mother has for her child; I wanted him to grow up happily, to go to school, get married, and have a fulfilling life that was free from some of the struggles I dealt with as a child. The first time I held him I promised him that I would do everything in my power to protect him from pain. I promised him that I would be there for him, no matter what. I remember that moment vividly even today, nine years later. I could not have known the implications of those promises as I sat cradling him in the hospital room that day. I remember how his dark blue eyes gazed intently into mine as if he understood me. I could not have known that a few short years later I would struggle to get those blue eyes to meet my gaze even for a second. I never dreamed that he would have trouble reciprocating or even understanding my love for him the way most children do. I could have never imagined that the pain I vowed to protect him from would originate inside his own mind. When I promised to do everything in my power to protect him, I never knew how powerless I would eventually be. The moment he was born I thought I understood what it meant to be a mother, but I had no idea.
Cole was diagnosed with Autism Spectrum Disorder at age six and later at age eight he was diagnosed with very severe Obsessive Compulsive Disorder.
The struggles were immense, he went years and got half a dozen different diagnoses before doctors (and there were many doctors) settled on the two he now has. He went through genetic screenings, MRIs, sleep deprived EEGs, and so many psychological, educational, and neurological evaluations I lost count. What I hear most often about Cole is how unique and complex he is. No one wrote a book on how to deal with a child like Cole. I think one day I should, because he can't be the only one.
Because I am Cole's mother I have had to become more of a fighter than I ever thought I could be. I had to become and advocate for him and through him I found a passion to advocate for all children like him. Because I am Cole's mother I have had to learn to deal with the death of many ideals, I have had to question my views on success and happiness and see things in a different light. I have to live life completely outside of the box.
Cole isn't my only child, he is by far the one who presents the most challenges, but I have three other children. That leads many people to question why I would go one to have three more kids after having one with special needs. The answer is simple, I view motherhood as a gift. There are days when it's so hard that it feels unbearable, there are days when you question yourself, when you want to cry, and moments when you wish you had time for a long bath or that those stretch marks and worry lines weren't there. I have never thought it was supposed to easy, but it's a gift despite the hard times.
There is nothing that compares to holding a new life in your arms, to look into those eyes that are seeing the world for the first time and to know that you get to be their guide and protector for a little while. Could there be a more awesome responsibility? Is there a more important job than the creation and nurturing of a human being? I love being a mother, it's something I feel I have dedicated my life to. I want a big family. I think I deserve to have that choice, I take this job seriously and I made all of my children the same promise as I held them in the hospital for the first time. I will do everything in my power to protect them and I will be there for them no matter what.
The reason I mention Cole in my first blog is because it was his birth and the challenges we have faced with him that defined the word mother for me. In the face of developmental disability and mental illness it's pretty easy to say "I didn't sign up for this" and check out. It would be easy to "leave it to the professionals" and the schools to teach and treat. It takes a concentrated effort to be the mother of a child with special needs. You fill so many more roles than you thought you would have to; you become a psychologist, a nutritionist, an occupational/speech/physical therapist, you become a walking encyclopedia on your child's illness and you suddenly find the need to become an expert on special education law and the ins and outs of the various state agencies that are supposed to provide assistance to those with special needs. It's an enormous task to undertake but mothers rise to the challenge and would never even give it a second thought. You take a very real emotional walk through the proverbial fire for your child.
Along this journey I have met other mothers who amaze and inspire me. I think that without even knowing it they helped teach me what a gift motherhood is. I don't think they see how strong they are, to them they are just doing their job as mothers. That is what I have the most admiration for, is how they don't even conceive of doing anything different. You give 150% because that's what you owe your child.
Yes, to me a child is a gift no matter what their individual challenges in life. Being someone's mother is a gift too, nothing will shape you, fulfill you, challenge you, or fill your heart like motherhood.
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~Rajneesh
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