Today I feel like grass. I have had this feeling twice this week as I have been mowed over and left standing stiff and mutilated while everyone around says, "It smells so nice."
First mowing of the week. On Sunday one of the girls from church, who is my age, approached me as we were all leaving and heading to our cars. She was like, "Hey, do you want to hang out some time?" This was strange... because never in my waking memory has someone approached me to see if I wanted to hang out. I told my husband about it... his response was, "It must be hard to be her. I bet she's really lonely." I thought about it and concurred. On Tuesday, I had on of those days. I woke up anxious. The sound of the kids was like a crushing steamroller on my existence. I couldn't escape the feeling of the world getting smaller. Everything was larger than life and impeding my ability to just breathe. So, when husband came home, through the constant tears that simply form and run down my face on these days I asked if I could just go out and wander for a bit. So, while I was out after I had sufficiently wandered and things began to seem usual again. I called her and said I was available for a drink or something. She was too, and we met at her place to have soda. It was an ambush. She was one of the few people that I made the mistake of telling about "the ASD". Apparently, having a terrible childhood she has been undergoing some therapy or counseling of sorts and wanted to let me know that there is hope for me. She told me I was lacking in my inability to have "connections" with others and it was because of my relationship with my mother. Which I disagree with, call it denial, call it Autism, whatever. She was insistent. The room grew smaller. My eyes were hot. I wanted to vomit. The idea of sitting in a room with someone and talking to them for an hour every week was terrifying... what was worse is I was stuck in this room with this head talking about my mother. Who despite her lack of "Betty Crockerness" has not offended me in the least with her mothering skills. I turned her off and when there was a break in the blades, I left. When I came home husband informed me he was sleeping on the couch to see if it would help to alleviate some of his back pain. So, I retired upstairs in my lair with a book about the SARS virus. Besides the the bedspread that my husband likes, my room is totally oriented to my need for soothing and simplicity in design. Its warm. Tan and brown, with white and off-white. The fabric is all just right and my white phalen orchid is just the perfect visual to allow me to drift to the places I like to drift to. Its fake so it never smells as the leaves decay and fall off... which they never do. I was totally alone. The rest of the house was dark and I could slide into my cocoon alone never fearing that my husband would reach over and change my environment by touch or temperature. I was irate. I felt like grass.
Today is Friday. Thank God right? No, the lawn mower came out again today. My first born has a speech delay. Today was the screening for the preschool which offers services for children with delays and disabilities. It was held in the cafeteria. No attempt was made to make it acoustically child friendly. There where toddlers running every where while adults (therapists and teachers) held individual interviews, testing and assessing the children. It was complete chaos. The teacher that "did" us is a friend of mine. I was overwhelmed and had a hard time focusing on the questions. I know she didn't notice. I kept looking for a reason to leave. But, he needs this so I was pretty stuck. Finally, we left the center of the echo room to a quiet room with no other children for the hearing test. Grass. Freshly mutilated and smelling pleasant to others. New room. Vision Test. It was determined that he had a speech delay. We made an appointment for a full evaluation and left. Half an hour later I realized I had been so frantically chewing my gum that my jaw hurt. The tears were coming in and out of my eyes. I had to drive across town to bring some painkillers to husband, who forgot to bring them to work. My hands were shaking. The membranes around my cells felt as if they were all going through lysis. I was grass. Luckily, the kids were exhausted from their first "school day" and wanted to take a nap. So, I retreated to my lair, crawled under my comforter and stared at my orchid as my mind wondered to the farthest reaches of the imagination. I fell asleep.
Friday, August 22, 2008
Monday, August 18, 2008
A Misunderstanding?!!
So, background information. I am 8 months pregnant. We just moved and I moved my prenatal care from a large HMO to a midwife. She just got my records from the HMO. I was very happy with the move because I was feeling like "they" were treating a different pregnancy than the one I was having. "They" (the doctors and nurses) kept pressuring me to take tests for conditions which I had no risk factors for and no symptoms of. "They" also wanted me to schedule an induction as they had classified this pregnancy as high risk.
More background info. This is my third child. My first two were born at home (on purpose) at full term, healthy, with no complications. I am a Group-B carrier, which means that antibiotics are usually administered as a standard in the hospital, I treated the group B at home with both pregnancies. Turns out... that neither child would have even been exposed because with both pregnancies my water did not break until the babies crowned. I also labor very quickly (less than 6 hours with both). I had a lot of contractions and began dilating very early with both of them, never enough to actually 'push' me into labor. I am 5'9" and weigh about 135 (pre-pregnancy). I used to weigh closer to 150 but broke my back and lost about 40lbs to muscle atrophy... which I have tried and tried to regain... but after 10yrs... its gone, I have accepted it. I am happy to keep my weight up to 135 which is a challenge. If I am not careful, like eating more than everybody at the table, I can easily start dropping weight. I also work as a model. I am not famous, I don't make a lot of money, but its fun and inconsistent. I only work with people I like more than once... and people I don't like, I just don't work with. I have an agent, they pay me, I pay taxes.
So, the midwife who is now handling my prenatal care... gets my records from the HMO. She says, "they've got you classified as high risk". I tell her, "I know... and the whole story..." She says that's not all... they say you are a 'possible eating disorder' and that you are a "model". Oh, more info about my midwife... I know her because she is the mother of my friend, another Ford Model. So, she is very aware of my work and knows I am not a delusional anorexic who believes that if I starve myself I will someday be a working model. Anyway, she found this very amusing that with quotes around model and assumption that I have an eating disorder they obviously did not believe that I was serious when I answered the occupation question.
I am so upset about this because it is not the first time a doctor has tried to diagnose me with an eating disorder... oh, my records also stated that I was obsessed with food. I am obsessed with food... I LOVE IT! I love to cook it, cut it, knead it, wash it, taste it and consume it. I love to know the chemical make-up... fats, carbs, sugars, fibers, how much vit A? vit D? any Riboflavin? I love food. I count calories for fun. I play games with the numbers in my head. I am a walking encyclopedia when it comes to nutrition and diet. Americans have such a ridiculous relationship with food that the word diet has totally lost its meaning and so when a 5'9" 130lb woman says diet... it is immediately assumed she is anorexic. Diet is like the word metabolism... it includes everything you put in your mouth. Just like metabolism includes every metabolic process, like peeing. People never think of that. My friends think I am crazy because I have in my head calorie counts for just about every food that is in my usual diet... fruits, vegetables, pasta, rice... ooh, love rice, basmati, jasmine, brown, short, long, wild...beans. I am not big on animals (its the texture.), so I don't really know a lot about calories for them, just the basics like fat content, vitamin content etc. Anyway, I can look at just about any plate of food and come up with a calories, vitamins, fiber, etc. and be pretty accurate. I am just now starting to count fast food calories... which are astounding by the way. I don't eat much fast food so I just pick up some info here and there. AAhhhh, I am getting off point.
So anyway, it bothers me that I am constantly fighting this "possibility of eating disorder" thing. I can't remember a doctor in my life that didn't immediately think I had an eating disorder. I am thin, but not that thin. Usually, I am a size 6. But when my midwife told me "they" had written that I am "obsessive" about food.... it clicked. It's not that I am thin, it's that food is an interest for me.... so the minute a doctor mentions food, I go off and spout out all this info I have about food in my head. They don't see that I am autistic and rambling... they think I have an eating disorder. So, how am I supposed to get competent medical care when doctors are constantly misinterpreting the information I have? I am autistic... I spend hours thinking about food. I am the same way with drugs and herbs. It fascinates me that we can put things into our body that affect our metabolism in so many ways. Diet Coke for instance. Zero calories in 12oz. Doesn't that blow anyone else away? How did they do that? I won't continue that line of thought ;O). So, anytime I talk to a doctor and they give their opinion on a drug or treatment, I always have one of my own. The problem is most doctors are busy doctoring and don't have time to research new drugs and treatment... they get an overview from a salesman and make opinions based on that. To find a good doctor you have to find a "teaching" doctor. They are at "teaching" hospitals and universities. There's other criteria too, but this is a good place to start. Since they are so busy doctoring... they are totally confused when non-biased info is presented to them via this overly talkative patient. I hope that with a diagnosis, maybe it'll help. But given that they can't see my Autism, I am not confident that the medical community will ever be able to offer me care I can use... simply because they can't see my Autism. And, they (generally speaking) don't realize that some Autistics can talk, and talk. So, I am beginning to think, I will always be diagnosed with an eating disorder, and possible drug problems. Because I know more than I should about those things. I have no idea how to cope with that possibility. I hate it... It makes me angry, but I know that the more I try to clarify... the more 'they' will believe I have these disorders.
More background info. This is my third child. My first two were born at home (on purpose) at full term, healthy, with no complications. I am a Group-B carrier, which means that antibiotics are usually administered as a standard in the hospital, I treated the group B at home with both pregnancies. Turns out... that neither child would have even been exposed because with both pregnancies my water did not break until the babies crowned. I also labor very quickly (less than 6 hours with both). I had a lot of contractions and began dilating very early with both of them, never enough to actually 'push' me into labor. I am 5'9" and weigh about 135 (pre-pregnancy). I used to weigh closer to 150 but broke my back and lost about 40lbs to muscle atrophy... which I have tried and tried to regain... but after 10yrs... its gone, I have accepted it. I am happy to keep my weight up to 135 which is a challenge. If I am not careful, like eating more than everybody at the table, I can easily start dropping weight. I also work as a model. I am not famous, I don't make a lot of money, but its fun and inconsistent. I only work with people I like more than once... and people I don't like, I just don't work with. I have an agent, they pay me, I pay taxes.
So, the midwife who is now handling my prenatal care... gets my records from the HMO. She says, "they've got you classified as high risk". I tell her, "I know... and the whole story..." She says that's not all... they say you are a 'possible eating disorder' and that you are a "model". Oh, more info about my midwife... I know her because she is the mother of my friend, another Ford Model. So, she is very aware of my work and knows I am not a delusional anorexic who believes that if I starve myself I will someday be a working model. Anyway, she found this very amusing that with quotes around model and assumption that I have an eating disorder they obviously did not believe that I was serious when I answered the occupation question.
I am so upset about this because it is not the first time a doctor has tried to diagnose me with an eating disorder... oh, my records also stated that I was obsessed with food. I am obsessed with food... I LOVE IT! I love to cook it, cut it, knead it, wash it, taste it and consume it. I love to know the chemical make-up... fats, carbs, sugars, fibers, how much vit A? vit D? any Riboflavin? I love food. I count calories for fun. I play games with the numbers in my head. I am a walking encyclopedia when it comes to nutrition and diet. Americans have such a ridiculous relationship with food that the word diet has totally lost its meaning and so when a 5'9" 130lb woman says diet... it is immediately assumed she is anorexic. Diet is like the word metabolism... it includes everything you put in your mouth. Just like metabolism includes every metabolic process, like peeing. People never think of that. My friends think I am crazy because I have in my head calorie counts for just about every food that is in my usual diet... fruits, vegetables, pasta, rice... ooh, love rice, basmati, jasmine, brown, short, long, wild...beans. I am not big on animals (its the texture.), so I don't really know a lot about calories for them, just the basics like fat content, vitamin content etc. Anyway, I can look at just about any plate of food and come up with a calories, vitamins, fiber, etc. and be pretty accurate. I am just now starting to count fast food calories... which are astounding by the way. I don't eat much fast food so I just pick up some info here and there. AAhhhh, I am getting off point.
So anyway, it bothers me that I am constantly fighting this "possibility of eating disorder" thing. I can't remember a doctor in my life that didn't immediately think I had an eating disorder. I am thin, but not that thin. Usually, I am a size 6. But when my midwife told me "they" had written that I am "obsessive" about food.... it clicked. It's not that I am thin, it's that food is an interest for me.... so the minute a doctor mentions food, I go off and spout out all this info I have about food in my head. They don't see that I am autistic and rambling... they think I have an eating disorder. So, how am I supposed to get competent medical care when doctors are constantly misinterpreting the information I have? I am autistic... I spend hours thinking about food. I am the same way with drugs and herbs. It fascinates me that we can put things into our body that affect our metabolism in so many ways. Diet Coke for instance. Zero calories in 12oz. Doesn't that blow anyone else away? How did they do that? I won't continue that line of thought ;O). So, anytime I talk to a doctor and they give their opinion on a drug or treatment, I always have one of my own. The problem is most doctors are busy doctoring and don't have time to research new drugs and treatment... they get an overview from a salesman and make opinions based on that. To find a good doctor you have to find a "teaching" doctor. They are at "teaching" hospitals and universities. There's other criteria too, but this is a good place to start. Since they are so busy doctoring... they are totally confused when non-biased info is presented to them via this overly talkative patient. I hope that with a diagnosis, maybe it'll help. But given that they can't see my Autism, I am not confident that the medical community will ever be able to offer me care I can use... simply because they can't see my Autism. And, they (generally speaking) don't realize that some Autistics can talk, and talk. So, I am beginning to think, I will always be diagnosed with an eating disorder, and possible drug problems. Because I know more than I should about those things. I have no idea how to cope with that possibility. I hate it... It makes me angry, but I know that the more I try to clarify... the more 'they' will believe I have these disorders.
Tuesday, August 12, 2008
Once again, I question normality...
I have been way into Tennessee Williams the last few weeks. My husband picked up a book called "Notebooks" for me to read. It's a collection of his journals from 1936-1981. It's is most intriguing most notably because he seems to have had insomnia and an anxiety disorder. It intrigued me to think about all the little pieces of the Autism Spectrum others have and yet are not Autistic.
So, what is normal? Is there a person out there who doesn't have some sort of "disorder"? We now have so many labels and diagnoses that I wonder if it's even possible to be disorder free. The latest one that has come to my attention is "Empathy Disorder"... meaning you are not a very sensitive person. Given that I am generally odd... my assessment would be that 99% of people have this disorder. Though I realized my perspective is skewed.
I just read Dr. Chew's latest blog about mitochondria disorder (find here http://www.autismvox.com/mitochondrial-disorders-common-in-the-general-population-but-what-about-for-autism/) and this furthers my thought process on disorders. The more I learn about Autism (despite its great help to my functionability) the more I wonder how long Autism has been filling our gene pool and if there is any "molecule" in this pool of the world that is not in some way affected by Autism Disorders/Symptoms. Just a thought.
Another interesting thought.... how much of my Autism Symptoms am I passing to my children as behavioral responses instead of neurological responses? Like when I have a "meltdown" or "zone out" my children learn this behavior. I have started noticing my son "zoning out" lately when there is a lot of conversation going on at the dinner table. It doesn't strike me as a symptom the way he does it, it strikes me has a learned behavior. He is doing his best to stay quiet so that Mommy and Daddy can catch up at the dinner table. When it's his turn to talk, he jumps right in.... and when his sister talks out of turn, he jumps right in to let her know it's Mommy and Daddy's turn. Just a thought.
So, what is normal? Is there a person out there who doesn't have some sort of "disorder"? We now have so many labels and diagnoses that I wonder if it's even possible to be disorder free. The latest one that has come to my attention is "Empathy Disorder"... meaning you are not a very sensitive person. Given that I am generally odd... my assessment would be that 99% of people have this disorder. Though I realized my perspective is skewed.
I just read Dr. Chew's latest blog about mitochondria disorder (find here http://www.autismvox.com/mitochondrial-disorders-common-in-the-general-population-but-what-about-for-autism/) and this furthers my thought process on disorders. The more I learn about Autism (despite its great help to my functionability) the more I wonder how long Autism has been filling our gene pool and if there is any "molecule" in this pool of the world that is not in some way affected by Autism Disorders/Symptoms. Just a thought.
Another interesting thought.... how much of my Autism Symptoms am I passing to my children as behavioral responses instead of neurological responses? Like when I have a "meltdown" or "zone out" my children learn this behavior. I have started noticing my son "zoning out" lately when there is a lot of conversation going on at the dinner table. It doesn't strike me as a symptom the way he does it, it strikes me has a learned behavior. He is doing his best to stay quiet so that Mommy and Daddy can catch up at the dinner table. When it's his turn to talk, he jumps right in.... and when his sister talks out of turn, he jumps right in to let her know it's Mommy and Daddy's turn. Just a thought.
Monday, August 4, 2008
It's amazing what is normal!
In my last post I talked about the things that affect me that I realize are not normal... Shortly after posting I was reading Asperger's United and realized I forgot about all the things that I have shifted into the normal/must adapt folder of my head.
A 15yr boy was describing what it meant to him to have Autism... he mentioned the foundational things that I have forgotten are not normal. He spoke about feeling like he didn't understand the language of society, and misunderstanding people and having to sort out all this info that is new and strange everyday. Wow! It brought back so many memories, recent and ancient. I forgot that my inability to decipher social behaviors is the reason I have the other problems. I feel like I just adjust and I only remember that I am socially incapable when my husband or a friend points out to me that I have responded poorly to a particular situation.
We went to a birthday party last night. I was so anxious. It's the presents. They weren't even mine, but it scares me to think about getting things I don't know what to do with. My Mom always said that when you get a present you smile and say Thank-you, no matter what you think about the present. This is such a stressful thing for me. It's terrible to get something that is going to clutter up my house, or that I really wouldn't use... and what is the rule on how long you have to keep the present before you can donate it, give it away, sell it or find some other way to get it out of the house? Anyway, I am glad it wasn't my b-day. That is why I don't have parties, the people that know me get me enough stuff to keep me anxious for the next year, a party would exponentially increase my problems. I have recently started requesting that people don't bring gifts to my kids birthday parties... it's nice because then we only get a few... I should think about that next year. OH!! I could ask people who feel the need to buy something for me to donate to a charity in my name. mmm, I wonder if they'd actually do it?
Tired today. But the weather outside is gorgeous, so I don't want to go back to bed. We went out for a bike ride this morning. The bed is calling louder and louder.
A 15yr boy was describing what it meant to him to have Autism... he mentioned the foundational things that I have forgotten are not normal. He spoke about feeling like he didn't understand the language of society, and misunderstanding people and having to sort out all this info that is new and strange everyday. Wow! It brought back so many memories, recent and ancient. I forgot that my inability to decipher social behaviors is the reason I have the other problems. I feel like I just adjust and I only remember that I am socially incapable when my husband or a friend points out to me that I have responded poorly to a particular situation.
We went to a birthday party last night. I was so anxious. It's the presents. They weren't even mine, but it scares me to think about getting things I don't know what to do with. My Mom always said that when you get a present you smile and say Thank-you, no matter what you think about the present. This is such a stressful thing for me. It's terrible to get something that is going to clutter up my house, or that I really wouldn't use... and what is the rule on how long you have to keep the present before you can donate it, give it away, sell it or find some other way to get it out of the house? Anyway, I am glad it wasn't my b-day. That is why I don't have parties, the people that know me get me enough stuff to keep me anxious for the next year, a party would exponentially increase my problems. I have recently started requesting that people don't bring gifts to my kids birthday parties... it's nice because then we only get a few... I should think about that next year. OH!! I could ask people who feel the need to buy something for me to donate to a charity in my name. mmm, I wonder if they'd actually do it?
Tired today. But the weather outside is gorgeous, so I don't want to go back to bed. We went out for a bike ride this morning. The bed is calling louder and louder.
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