I am reading the longest book in the whole world. I did not think Moby Dick was too long. I did not think Lord of the Rings was too long. Atlas Shrugged is way, way too long. The characters lecture each other over and over and, ahem, repeatedly. Just in case we don't get it the first or third or twelfth time. So I am interested in quirks by the writer: it is important and a matter of principle to wear expensive clothes. Slim equals good. Fat equals bad. Thanks a lot, anexoric Ayn Rand. High word count of violent, violence, serene, suffer, values, principles, motion, looters etc. There's a strain of sado-masochism in the sex, which puzzles me. My husband and I like each other and like sex, but not once have we thought S&M would add anything worthwhile to the practice.
This book exemplifies the basis of the libertarian party, and preaches a lot of what I can agree with, and preaches a lot of appalling morals. Except for two children so far, all the very few children seen are feral rats. Everyone in the government is a fleshy feral rat. I suppose that because it is a morality play there is no character development beyond the type needed in each space in the plot. One thing I like is the adoration given to the industrialists. I need to remember that she lived through the communist takeover of Russia and saw how they used language, and how they destroyed all viable means of production. She is warning us how that happens in this book.
Monday, May 24, 2010
Monday, May 17, 2010
Asberger's and consequences
The worst thing about having Asperger's is being so often mistaken, for me specifically about belonging to a group. I recently joined a critique group (the old one I belonged to for a decade ended when everybody moved or got a job) and was put on probation. Then my probation was extended an extra month because I did not give long enough critiques of the other members' works. OK, longer, more detailed critiques coming. So I thought I was doing okay and getting along with everybody when I got the email today telling me that I was being dropped from the group. I am blind-sided about this type of thing every single time. How is it that so often I think all of us are getting along in a group and I can't tell that I am truly bothering the other members? How can I stop bothering people when I can't even tell that I am bothering people? Heh, and my husband wonders why I don't join more organizations and get more social. He has never been asked to leave a group, (indeed he is usually asked to assume leadership) and so he has no idea how much it hurts.
Thursday, April 29, 2010
A chickadee was just tapping at my window while I was looking at Carole McDonnell's blog. Was it telling me that all the bird food was gone or picking up invisible to me insects? I got up and set out suet and sunflower seeds amongst excited chirping. The dog got excited because I always give her the suet container to lick and chew on. Happy, happy Pepper, the hairy hairless Chinese Crested mix.
I finished The Mermaid Chair by Sue Monk Kidd last night. How I wish I could write as beautifully as she. She has a gift for using the exact right adverb or adjective that describes everything. Her metaphorical use of mermaids is masterful. But as to the plot.... Sigh. I despise adultery. It's engaged in enough that there must be billions of people not getting their perceived needs met. And I need to remember that not very many woman have my wonderful husband. ... So the main character in her midlife crisis has a few months of glorious sex with a monk and becomes alive and can do art again now that she's broken out of her box of marriage. It's fantasy sex with someone she does not know who might leave his socks on the floor or might behave abominably in traffic, but she doesn't need to deal with it, so this is good for both of them, and she returns to her marriage revitalized. Whoopee. She also discovers that the pipe she gave her father as a child is not, after all, the cause of his death. Instead, she discovers that her father committed suicide after coming down with the same hideous brain-eating disease his father did. And instead of finding a way to kill himself by himself, he has to involve two monks, his wife and two of her friends, who make it look like an accident. Guilt drives the mother of the main character to, thirty years later, cut off her fingers. Once the mother is forced to confess this to the daughter, she is freed of the compulsion to punish herself. Uh huh. So now I have been taught that having a fling would help me return refreshed to my marriage.
Being in love is an awful lot of fun. I can see the attraction. Since I make friends among men more easily than I do women (unless the woman also has a mild case of asperger's or has no problem with my differences) I've had the chance to skirt the edges of falling in love again. When I find my emotions going there, I simply draw back until the hint of the possibility goes away. Why can't everybody else do that? I suppose my attitude is why my feeling daughter finds me such a chore sometimes. She told me she's tired of explaining why she likes the dangerous things she does. After all, I'm never going to get it. I suppose so. I solved my mid-life crisis by taking college classes. I already have a B.S. in medical technology, so I was relaxed in the classes and massively outperformed the students half my age. Wish I could have been that good the first time I went to college.
I finished The Mermaid Chair by Sue Monk Kidd last night. How I wish I could write as beautifully as she. She has a gift for using the exact right adverb or adjective that describes everything. Her metaphorical use of mermaids is masterful. But as to the plot.... Sigh. I despise adultery. It's engaged in enough that there must be billions of people not getting their perceived needs met. And I need to remember that not very many woman have my wonderful husband. ... So the main character in her midlife crisis has a few months of glorious sex with a monk and becomes alive and can do art again now that she's broken out of her box of marriage. It's fantasy sex with someone she does not know who might leave his socks on the floor or might behave abominably in traffic, but she doesn't need to deal with it, so this is good for both of them, and she returns to her marriage revitalized. Whoopee. She also discovers that the pipe she gave her father as a child is not, after all, the cause of his death. Instead, she discovers that her father committed suicide after coming down with the same hideous brain-eating disease his father did. And instead of finding a way to kill himself by himself, he has to involve two monks, his wife and two of her friends, who make it look like an accident. Guilt drives the mother of the main character to, thirty years later, cut off her fingers. Once the mother is forced to confess this to the daughter, she is freed of the compulsion to punish herself. Uh huh. So now I have been taught that having a fling would help me return refreshed to my marriage.
Being in love is an awful lot of fun. I can see the attraction. Since I make friends among men more easily than I do women (unless the woman also has a mild case of asperger's or has no problem with my differences) I've had the chance to skirt the edges of falling in love again. When I find my emotions going there, I simply draw back until the hint of the possibility goes away. Why can't everybody else do that? I suppose my attitude is why my feeling daughter finds me such a chore sometimes. She told me she's tired of explaining why she likes the dangerous things she does. After all, I'm never going to get it. I suppose so. I solved my mid-life crisis by taking college classes. I already have a B.S. in medical technology, so I was relaxed in the classes and massively outperformed the students half my age. Wish I could have been that good the first time I went to college.
Tuesday, April 27, 2010
Funerals and grief
Our houseguest's wife died. She was buried wearing the Coptic cross I had gotten for myself in Ethiopia. I did not feel sad; I felt exhausted and unable to cope. And a couple days ago, I simply could not find any of the nouns I wanted while speaking. He is having trouble getting through his days, so I am preparing more meals for him. The mother of our music pastor died, and the funeral was extraordinary as was the life of this mother of eight musicians volunteer and worker in education.
I have finished what I hope is the last proofreading of The Circumnavigation Of Shatterworld. Othersheep of Written World Communications has indicated an interest in the Trilogy. Perhaps I won't need to self-publish it after all. We'll see. So today I need to write up some synopses.
Reading, reading: Since I had denied myself SF for Lent, I went on a Dean Koontz tear and read 5 or 8 of his books in a row. I enjoy his thoughtful, elegant writing, but suddenly I did not want to read about one more murder or creative way to violate a body. I had had it. So I read Ebola by Dr. William T. Close. Absolutely fascinating. I fell in love with the nuns that gave their lives in service to the Africans in the Congo.
The Parrot's Lament by Eugene Linden: What a fun book about animals thinking things through.
The Boneman's Daughter by Ted Dekker. After the elegance of Koontz, it felt almost painful to read Dekker's prose. I understand that his prose is thoroughly acceptable and engaged in by an entire generation of whippersnapper writers. I myself use the occasional sentence fragment because sometimes that is the best way to say something; but this new style where up to half the sentences in a book are fragments is detestable to me. Sentence. Modifier fragment. Intensifier fragment. Another intensifier fragment. Aaaaargh! I got to the end of the book and Dekker has there a small essay describing how the book was a metaphoric description of what was going on between him and his daughter. I cried.
I read two sequels of Marcher Lord Press books: To Darkness Fled by Jill Williamson and, and, I can't find it. My husband must have taken it to work with him. The title is something like The Stream Supernal by Kerry Nietz. I hope Kerry doesn't get his head cut off for telling thinly veiled true stories. The Williamson story I must accept as straight metaphor because no economy would work in her world. People who don't wonder how pencils are made will enjoy the adventure of the story.
Lent ended and I read a batch of SF novels that were pretty much all meh. I dropped Earthbow by Sherry Thompson after two chapters. I was disappointed again after purchasing a fantasy written by a Christian. I want to support the Christians who write in the Fantasy field. I wish I could stand the writing of said people. I like high fantasy with writing that is close to poetry. That's why I don't write fantasy. I cannot achieve what I would want to write. I am prosaic, so I write prosaic science fiction.
We have had variable weather here for the last few weeks. When the sun shines, I run outside and work in the gardens. I am far behind in maintainence. I am always behind in maintainence. I hid some treasure chests in the cave (a rock covered dogloo) for the next batch of grandkids. I took the middle grandson and matching niece to Good Will and we bought all sorts of treasures for the chests. They found a cardboard chest that I hope can be a painting project for this summer.
For my Dad's birthday, I drove up to his house in Kelso and planted seeds of dry loving flowers in the front planter, took out some of the junk on the front rocks and planter, did some preliminary pruning on the Japanese maple and exposed the lantern, sprayed weeds close in to the house, emptied out the tomato planters and put in a few inches of chicken manure, had enough potting soil to fill two of the concrete planters and put in two tomato plants 6 wks early on a gamble and some lettuce, planted some flowers in the fern garden, did a little cutting on the blackberries, hauled and dumped wheelbarrows of dirt, etc. Doesn't sound like much for all the hours I put into it. Then when I ran into the house to grab some scissors to open the bag of fertilizer for the tomatoes I had bought for him, he shouted, "Close the damn door!" He had never even looked at what I had done for him. Now, my dad is my dad, and he usually gives back whatever I give him as a present, saying he doesn't want it. So I know that it's gambling to give him anything, but every so often I hit it right. I thought I might have done so this time. Apparently not. Well, he was likely sick. He had told me he slept in until 10:30 that morning. That should have been a clue. And as much as he maybe appreciates the work his kids have put into his place to make sure it doesn't look abandoned and as much as he has been asked before anything has been done, he likely doesn't like the reminders of his present feebleness and seeing so much of his work through the decades being dismantled. I should have shrugged it off. But this time, the hurt cut deep. Now, he's been ticked for decades that every one of his kids became a Christian and a Damn Republican. He's still mad about an 8 yr old preacher's kid that persuaded him (when he was 6) to join him in shoplifting some candy bars. The police caught the boys, took them to jail, and called the fathers. His dad called him jailbird for years. So, if he can't forgive that (happened 79 yrs ago), there is no reason to expect he'll ever forgive me. And as Mom taught me: don't ever ask for what someone won't give you. So why did I suddenly expect that he was going to respect me? I dunno. I think I was a little sick too. I had to spend the next day in bed. Every time I stood up I sneezed uncontrollably and felt cold. I could hear Dad behind me saying he felt cold as I hastily shut the door, grabbed the scissors, and ran out again, closing the door. I had planned to watch TV with him for a few hours when I couldn't work anymore, but after fertilizing the tomatoes, I just put away all the tools and threw out all the garbage and drove home. I couldn't even say goodbye. I just left. Well, since I'm the Christian, I need to go back and keep on loving him.
I have finished what I hope is the last proofreading of The Circumnavigation Of Shatterworld. Othersheep of Written World Communications has indicated an interest in the Trilogy. Perhaps I won't need to self-publish it after all. We'll see. So today I need to write up some synopses.
Reading, reading: Since I had denied myself SF for Lent, I went on a Dean Koontz tear and read 5 or 8 of his books in a row. I enjoy his thoughtful, elegant writing, but suddenly I did not want to read about one more murder or creative way to violate a body. I had had it. So I read Ebola by Dr. William T. Close. Absolutely fascinating. I fell in love with the nuns that gave their lives in service to the Africans in the Congo.
The Parrot's Lament by Eugene Linden: What a fun book about animals thinking things through.
The Boneman's Daughter by Ted Dekker. After the elegance of Koontz, it felt almost painful to read Dekker's prose. I understand that his prose is thoroughly acceptable and engaged in by an entire generation of whippersnapper writers. I myself use the occasional sentence fragment because sometimes that is the best way to say something; but this new style where up to half the sentences in a book are fragments is detestable to me. Sentence. Modifier fragment. Intensifier fragment. Another intensifier fragment. Aaaaargh! I got to the end of the book and Dekker has there a small essay describing how the book was a metaphoric description of what was going on between him and his daughter. I cried.
I read two sequels of Marcher Lord Press books: To Darkness Fled by Jill Williamson and, and, I can't find it. My husband must have taken it to work with him. The title is something like The Stream Supernal by Kerry Nietz. I hope Kerry doesn't get his head cut off for telling thinly veiled true stories. The Williamson story I must accept as straight metaphor because no economy would work in her world. People who don't wonder how pencils are made will enjoy the adventure of the story.
Lent ended and I read a batch of SF novels that were pretty much all meh. I dropped Earthbow by Sherry Thompson after two chapters. I was disappointed again after purchasing a fantasy written by a Christian. I want to support the Christians who write in the Fantasy field. I wish I could stand the writing of said people. I like high fantasy with writing that is close to poetry. That's why I don't write fantasy. I cannot achieve what I would want to write. I am prosaic, so I write prosaic science fiction.
We have had variable weather here for the last few weeks. When the sun shines, I run outside and work in the gardens. I am far behind in maintainence. I am always behind in maintainence. I hid some treasure chests in the cave (a rock covered dogloo) for the next batch of grandkids. I took the middle grandson and matching niece to Good Will and we bought all sorts of treasures for the chests. They found a cardboard chest that I hope can be a painting project for this summer.
For my Dad's birthday, I drove up to his house in Kelso and planted seeds of dry loving flowers in the front planter, took out some of the junk on the front rocks and planter, did some preliminary pruning on the Japanese maple and exposed the lantern, sprayed weeds close in to the house, emptied out the tomato planters and put in a few inches of chicken manure, had enough potting soil to fill two of the concrete planters and put in two tomato plants 6 wks early on a gamble and some lettuce, planted some flowers in the fern garden, did a little cutting on the blackberries, hauled and dumped wheelbarrows of dirt, etc. Doesn't sound like much for all the hours I put into it. Then when I ran into the house to grab some scissors to open the bag of fertilizer for the tomatoes I had bought for him, he shouted, "Close the damn door!" He had never even looked at what I had done for him. Now, my dad is my dad, and he usually gives back whatever I give him as a present, saying he doesn't want it. So I know that it's gambling to give him anything, but every so often I hit it right. I thought I might have done so this time. Apparently not. Well, he was likely sick. He had told me he slept in until 10:30 that morning. That should have been a clue. And as much as he maybe appreciates the work his kids have put into his place to make sure it doesn't look abandoned and as much as he has been asked before anything has been done, he likely doesn't like the reminders of his present feebleness and seeing so much of his work through the decades being dismantled. I should have shrugged it off. But this time, the hurt cut deep. Now, he's been ticked for decades that every one of his kids became a Christian and a Damn Republican. He's still mad about an 8 yr old preacher's kid that persuaded him (when he was 6) to join him in shoplifting some candy bars. The police caught the boys, took them to jail, and called the fathers. His dad called him jailbird for years. So, if he can't forgive that (happened 79 yrs ago), there is no reason to expect he'll ever forgive me. And as Mom taught me: don't ever ask for what someone won't give you. So why did I suddenly expect that he was going to respect me? I dunno. I think I was a little sick too. I had to spend the next day in bed. Every time I stood up I sneezed uncontrollably and felt cold. I could hear Dad behind me saying he felt cold as I hastily shut the door, grabbed the scissors, and ran out again, closing the door. I had planned to watch TV with him for a few hours when I couldn't work anymore, but after fertilizing the tomatoes, I just put away all the tools and threw out all the garbage and drove home. I couldn't even say goodbye. I just left. Well, since I'm the Christian, I need to go back and keep on loving him.
Monday, March 15, 2010
I read Shadow Of God, a depressing book about the siege of Rhodes where the Muslims won the war.
Christian Short Stories, An Anthology edited by Mark Booth. Some of the stories were too sentimental for my taste now. I think that is the one thing that has changed about my taste. Other than that, I still read and enjoy what I read in the Fifth Grade. I'm not sure why the Outcasts Of Poker Flat was included. The Father Brown story was fun to read again. I really liked The Song Of The Min.ster by William Canton, which was scarcely a story at all, but rather a hymn of praise to God. The minister had been angry about the art being added to the church when he had a vision. A quote from the story: As he crept back to his cell he saw with unsealed eyes how churlishly he had grudged God the glory of man's genius and the service of His dumb creatures, the metal of the hills, and the stone of the quarry, and the timber of the forest; for now he knew that at all seasons, and whether men heard the music or not, the ear of God was filled by day and by night with an everlasting song from each stone of the vast Minster. It was good for me to read again The Artificial Nigger by Flannery O'Conner. I first read it in my twenties and could not for the life of me understand why this ugly story about ugly, ignorant people was a good Christian story. This time I got it! All we can bring to God is our ugliness and ignorance, and He gives us grace. If we bring Him our pride, He can give us nothing.
The story reminded me how at one time I thought I wasn't too bad a person (looking back now, I'm appalled). But raising a handicapped child taught me thoroughly that I am indeed a sinner and need God's mercy.
Christian Short Stories, An Anthology edited by Mark Booth. Some of the stories were too sentimental for my taste now. I think that is the one thing that has changed about my taste. Other than that, I still read and enjoy what I read in the Fifth Grade. I'm not sure why the Outcasts Of Poker Flat was included. The Father Brown story was fun to read again. I really liked The Song Of The Min.ster by William Canton, which was scarcely a story at all, but rather a hymn of praise to God. The minister had been angry about the art being added to the church when he had a vision. A quote from the story: As he crept back to his cell he saw with unsealed eyes how churlishly he had grudged God the glory of man's genius and the service of His dumb creatures, the metal of the hills, and the stone of the quarry, and the timber of the forest; for now he knew that at all seasons, and whether men heard the music or not, the ear of God was filled by day and by night with an everlasting song from each stone of the vast Minster. It was good for me to read again The Artificial Nigger by Flannery O'Conner. I first read it in my twenties and could not for the life of me understand why this ugly story about ugly, ignorant people was a good Christian story. This time I got it! All we can bring to God is our ugliness and ignorance, and He gives us grace. If we bring Him our pride, He can give us nothing.
The story reminded me how at one time I thought I wasn't too bad a person (looking back now, I'm appalled). But raising a handicapped child taught me thoroughly that I am indeed a sinner and need God's mercy.
Tears
I was teary all during church yesterday. I could not figure out why. Was God touching me? A young man was praying hard in front of me and I prayed for his family. It is so hard to love two people and then find out each has done awful things to each other. They want to be able to trust each other again, but nothing the other says can cause that to happen. I still love and ache for both. How much worse to be a child in the middle of that angry marriage and angry divorce. Then I figure out that he is just sleeping. I thank God for the family facing cancer and the good diagnosis after surgery. I pray for the families in much deeper financial crises than ours. The sermon was about, among other things, tithing. My good friend is crying because she and her husband had had just the day before another fight about her tithing the subsidy checks for their adoption of handicapped kids. I told her she didn't need to tithe those checks, and then I dragged her to the pastor who said the same thing. Then he pointed out that she also needed to honor her husband, and if he forbade it, then she was free of the requirement to tithe. God knew the desire of her heart. And then I realized why I was teary. Yesterday, I opened myself to the thought that I just didn't do enough for my daughter with autism plus.
That always agitates me. We tried all sorts of special diets, supplements, as much sensory training as I alone could provide (which actually did help, she stopped cutting her hands on broken glass and fingerpainting blood on the walls), auditory training, and advocating for her at school. I would still like to try a secretin trial. Beyond that, we could not afford to do, or were too tired to do, or felt would be unfair to our other children.
I read Mixed Blessings by that guy who played the chaplain in MASH. As I read it, I grew more and more resentful of the gain after gain they made with constant interventions, costly interventions we would never be able to give our daughter. Then I cried when their son lost it all in his teens. I decided then that our daughter was getting all she needed and I need not be jealous of other people's resources. After all, if nothing but sensory and auditory training had any effect on her, why did I think these other therapies would do anything for her?
That always agitates me. We tried all sorts of special diets, supplements, as much sensory training as I alone could provide (which actually did help, she stopped cutting her hands on broken glass and fingerpainting blood on the walls), auditory training, and advocating for her at school. I would still like to try a secretin trial. Beyond that, we could not afford to do, or were too tired to do, or felt would be unfair to our other children.
I read Mixed Blessings by that guy who played the chaplain in MASH. As I read it, I grew more and more resentful of the gain after gain they made with constant interventions, costly interventions we would never be able to give our daughter. Then I cried when their son lost it all in his teens. I decided then that our daughter was getting all she needed and I need not be jealous of other people's resources. After all, if nothing but sensory and auditory training had any effect on her, why did I think these other therapies would do anything for her?
Saturday, March 13, 2010
Mother Warriors
Mother Warriors by Jenny McCarthy: I finished this a while ago, but it is taking me a long time to figure out what to say about it.
The author comes across as rude and crude in her writing, but I tried hard to not let that bias me against anything worthwhile she might say. A huge number of people on Wrong Planet hate her passionately. For some reason I thought she was associated with Autism Speaks; perhaps because that is also virulently hated by WP. So, I wanted to hear her side of the story.
PAIN! SCREAM! PAIN! SHOUT!
Good grief. I have no patience for such emotionality, as our emotional daughter can attest. I cannot understand why McCarthy and others hate the medical "establishment" but love and trust the vitamin makers. Perhaps it is because the vitamin makers advertise by anecdote and doctors want double-blind studies; and because emotional people respond to anecdotes and not to statistics.
I realize there is an empathy and sympathy deficit within me, but even so... I have worked in hospitals and I can tell you that screaming in a doctor's face is not going to gain the attention you want for your child.
An anecdote here: when my five-year-old daughter with autism plus was dying, wait, back up here. After taking my daughter twice to a clinic and her getting worse, I took her to the ER because she wasn't swallowing. The doctor prissy-pranced around her and his first question was, "When did you first notice that your daughter was autistic?" What that had to do with a sore throat, I didn't know, but I also did not want to antagonize the MD, so I answered all his questions. He never touched her (perhaps he had once been mauled by an autistic kid), and sent us to X-ray. After X-ray, I picked up the antibiotic and went home.
Two and half days later I got a phone call from the hospital somebody asking in an odd tone if my daughter was all right. "No, she's not," I said tearfully, "she can't swallow the medicine, she's flaccid, and she stops breathing every so often. I have to shake her to make her breathe again!" I was told, "Don't give her any more medicine. Don't give her anything to swallow or she could die. Bring her to the ICU now!"
Somebody had screwed up. Was I mad? You bet. I raced her to the hospital and she was admitted and I crawled into bed with her while nurses hung up an IV bottle with an antibiotic. I propped her in my lap and shook her every time she turned gray. (I cannot recall what I did with our fourth-grader and baby.) Three or four doctors drifted in, asked me when was the first time I noticed she was autistic, and drifted out again.
I talked to the mom of the boy broken all over in the bed next to me. Night found me up for the third night in a row, shaking my daughter every ten minutes or so. In the morning, nothing had changed for her, another doctor asked me when had I first noticed my daughter was autistic, and changed the antibiotic which should be curing her epiglottitis. She just turned grayer.
I left her long enough to make a phone call to my husband. How I reached him when he was four hours away at a dental class reunion in a time when all telephones were attached to walls, I don't know. Yes, I do; I had the hotel page him. I told him our daughter was dying and I needed him to come to X hospital right now.
He said that he was having such a good time meeting people he hadn't seen in years and couldn't one of his sisters go be with me? I could not believe what I was hearing. "Your daughter is dying!" I said, and slammed down the phone. My mother handed me a kleenex. To his credit, at that point he did get into the car and drive the four hours. He said later that it did not seem real. What he never has said was that reunion was his first carefree time in years. Also, when his mind is focused on a thing, it is difficult for him to drag it elsewhere.
During those four hours, our daughter got grayer as I shook her every two to five minutes. Doctors were becoming very puzzled. I was changing my daughter's diaper and noticed the lymph glands in her groin were swollen. A doctor came in and watched us a few seconds before asking, "When was the first time--."
"Excuse me," I interrupted as politely as I knew how, "but could you look here? It seems like her lymph glands are swollen. Do you think they are?"
He felt them, he felt her neck, and whoosh! he was gone. I was glad somebody finally touched her and that I didn't need to spend fifteen minutes telling her life history yet again.
A medical technologist jogged in, drew blood, and jogged out.
A few minutes later a nurse switched the IV bag again. This time it had prednisone in it. A doctor explains that my daughter has mono, and that only in children between four and six years of age does mono cause an immune response that swells up the throat. She never did have epiglottitis.
In fifteen minutes, our daughter woke up, and she wanted out of there now! My husband showed up. Another fifteen minutes of paperwork and my daughter bounced out of ICU.
So..... I guess she wasn't dying. Well, it sure seemed like it at the time. We tapered her off the prednisone over a two week time as she kept her head in the refrigerator and grew a potbelly. Me, I was on 50mg of prednisone a day to save my life from glomerularnephritis and lupus, and I had to take two years to taper off. I am grateful it saved our lives, but I hate the stuff. It made me emotionally labile, and there were times I would watch myself screaming and inside would be saying, Stop it, Lelia, stop it! but I had no control for a year or two there.
Okay. I told you all that to tell you this. I am quite well acquainted with the despair that can accompany having a severely autistic and violent child. I've done my share of dark nights of the soul, etc., but this book is over the top. Also, she keeps characterizing autism as a horrible enemy. I can see why those of us who end up identifying at least a little with our syndrome would find it offensive to be called the enemy.
She tells the stories of a number of parents in an overly wrought style. The kid who died while seizuring? Okay, I'll grant how awful that is. Did the kid get his problem from a vaccine. I doubt it, but it is possible. But kids have seizured to death all through history. They get seizures from the diseases vaccinated against also. One reason I am so deaf is because I had measles as a youngster. Children were born deaf when their mothers caught measles. Some children died in utero. When we were stationed in Japan, a number of babies in the nursery died from chicken pox. Statistically, life is better with vaccines. Of course, if it's your kid that is the one in 50,000 that dies or gets autism from a vaccine, then it is too much. I wish the vaccine schedules were stretched out more, but I understand the public health issues of getting the shots in while the kid is in the office because he might not come back.
She tells the story of one kid who is supposed to be cured as long as he takes 200 pills throughout a day. 200 pills a day!! Well, I need to take, ahem, X number of pills a day to stay healthy, but still... She talks about a number of things that "work" for autistic kids and cure them. I understand that "works" can mean any sort of improvement. Auditory training for our daughter "worked" in that she understood what we were saying for the first time in her life, so when her schedule changed and we had warned her ahead of time, she no longer tried to kill us for upsetting her life. She became a little more emotionally attuned to us. She made a friend (which, alas, we moved away from). I met others who had rather more dramatic changes, but I did not see anyone who was cured. Well, okay, there was the gal from Sound Of A Miracle, who fits within normal parameters now, but she still needs to deal with her hypersensitivities.
In the book, she gives an address of where to go to talk to moms of cured kids. That is very tempting. I just wonder if I really want to open the door to thinking that if we had just tried this one more thing, our daughter would be more than a wookie.
The author comes across as rude and crude in her writing, but I tried hard to not let that bias me against anything worthwhile she might say. A huge number of people on Wrong Planet hate her passionately. For some reason I thought she was associated with Autism Speaks; perhaps because that is also virulently hated by WP. So, I wanted to hear her side of the story.
PAIN! SCREAM! PAIN! SHOUT!
Good grief. I have no patience for such emotionality, as our emotional daughter can attest. I cannot understand why McCarthy and others hate the medical "establishment" but love and trust the vitamin makers. Perhaps it is because the vitamin makers advertise by anecdote and doctors want double-blind studies; and because emotional people respond to anecdotes and not to statistics.
I realize there is an empathy and sympathy deficit within me, but even so... I have worked in hospitals and I can tell you that screaming in a doctor's face is not going to gain the attention you want for your child.
An anecdote here: when my five-year-old daughter with autism plus was dying, wait, back up here. After taking my daughter twice to a clinic and her getting worse, I took her to the ER because she wasn't swallowing. The doctor prissy-pranced around her and his first question was, "When did you first notice that your daughter was autistic?" What that had to do with a sore throat, I didn't know, but I also did not want to antagonize the MD, so I answered all his questions. He never touched her (perhaps he had once been mauled by an autistic kid), and sent us to X-ray. After X-ray, I picked up the antibiotic and went home.
Two and half days later I got a phone call from the hospital somebody asking in an odd tone if my daughter was all right. "No, she's not," I said tearfully, "she can't swallow the medicine, she's flaccid, and she stops breathing every so often. I have to shake her to make her breathe again!" I was told, "Don't give her any more medicine. Don't give her anything to swallow or she could die. Bring her to the ICU now!"
Somebody had screwed up. Was I mad? You bet. I raced her to the hospital and she was admitted and I crawled into bed with her while nurses hung up an IV bottle with an antibiotic. I propped her in my lap and shook her every time she turned gray. (I cannot recall what I did with our fourth-grader and baby.) Three or four doctors drifted in, asked me when was the first time I noticed she was autistic, and drifted out again.
I talked to the mom of the boy broken all over in the bed next to me. Night found me up for the third night in a row, shaking my daughter every ten minutes or so. In the morning, nothing had changed for her, another doctor asked me when had I first noticed my daughter was autistic, and changed the antibiotic which should be curing her epiglottitis. She just turned grayer.
I left her long enough to make a phone call to my husband. How I reached him when he was four hours away at a dental class reunion in a time when all telephones were attached to walls, I don't know. Yes, I do; I had the hotel page him. I told him our daughter was dying and I needed him to come to X hospital right now.
He said that he was having such a good time meeting people he hadn't seen in years and couldn't one of his sisters go be with me? I could not believe what I was hearing. "Your daughter is dying!" I said, and slammed down the phone. My mother handed me a kleenex. To his credit, at that point he did get into the car and drive the four hours. He said later that it did not seem real. What he never has said was that reunion was his first carefree time in years. Also, when his mind is focused on a thing, it is difficult for him to drag it elsewhere.
During those four hours, our daughter got grayer as I shook her every two to five minutes. Doctors were becoming very puzzled. I was changing my daughter's diaper and noticed the lymph glands in her groin were swollen. A doctor came in and watched us a few seconds before asking, "When was the first time--."
"Excuse me," I interrupted as politely as I knew how, "but could you look here? It seems like her lymph glands are swollen. Do you think they are?"
He felt them, he felt her neck, and whoosh! he was gone. I was glad somebody finally touched her and that I didn't need to spend fifteen minutes telling her life history yet again.
A medical technologist jogged in, drew blood, and jogged out.
A few minutes later a nurse switched the IV bag again. This time it had prednisone in it. A doctor explains that my daughter has mono, and that only in children between four and six years of age does mono cause an immune response that swells up the throat. She never did have epiglottitis.
In fifteen minutes, our daughter woke up, and she wanted out of there now! My husband showed up. Another fifteen minutes of paperwork and my daughter bounced out of ICU.
So..... I guess she wasn't dying. Well, it sure seemed like it at the time. We tapered her off the prednisone over a two week time as she kept her head in the refrigerator and grew a potbelly. Me, I was on 50mg of prednisone a day to save my life from glomerularnephritis and lupus, and I had to take two years to taper off. I am grateful it saved our lives, but I hate the stuff. It made me emotionally labile, and there were times I would watch myself screaming and inside would be saying, Stop it, Lelia, stop it! but I had no control for a year or two there.
Okay. I told you all that to tell you this. I am quite well acquainted with the despair that can accompany having a severely autistic and violent child. I've done my share of dark nights of the soul, etc., but this book is over the top. Also, she keeps characterizing autism as a horrible enemy. I can see why those of us who end up identifying at least a little with our syndrome would find it offensive to be called the enemy.
She tells the stories of a number of parents in an overly wrought style. The kid who died while seizuring? Okay, I'll grant how awful that is. Did the kid get his problem from a vaccine. I doubt it, but it is possible. But kids have seizured to death all through history. They get seizures from the diseases vaccinated against also. One reason I am so deaf is because I had measles as a youngster. Children were born deaf when their mothers caught measles. Some children died in utero. When we were stationed in Japan, a number of babies in the nursery died from chicken pox. Statistically, life is better with vaccines. Of course, if it's your kid that is the one in 50,000 that dies or gets autism from a vaccine, then it is too much. I wish the vaccine schedules were stretched out more, but I understand the public health issues of getting the shots in while the kid is in the office because he might not come back.
She tells the story of one kid who is supposed to be cured as long as he takes 200 pills throughout a day. 200 pills a day!! Well, I need to take, ahem, X number of pills a day to stay healthy, but still... She talks about a number of things that "work" for autistic kids and cure them. I understand that "works" can mean any sort of improvement. Auditory training for our daughter "worked" in that she understood what we were saying for the first time in her life, so when her schedule changed and we had warned her ahead of time, she no longer tried to kill us for upsetting her life. She became a little more emotionally attuned to us. She made a friend (which, alas, we moved away from). I met others who had rather more dramatic changes, but I did not see anyone who was cured. Well, okay, there was the gal from Sound Of A Miracle, who fits within normal parameters now, but she still needs to deal with her hypersensitivities.
In the book, she gives an address of where to go to talk to moms of cured kids. That is very tempting. I just wonder if I really want to open the door to thinking that if we had just tried this one more thing, our daughter would be more than a wookie.
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