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.


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?

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.
     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.

Saturday, March 6, 2010

Tired and sore today, but happy. Two days ago I celebrated being up in good shape by going to a memorial service for my sister's stepmother-in-law and visiting some with her gathered children. The next day all of us went to Dad's house and cleared some more land. Best beloved and I cleared a lot around the cement fish pond. When had the grapevine trellis collapsed? I hadn't noticed because of all the blackberry vines. Today I hope to dig up all the compost covering the pond and concrete walks made by the birds and sunflower seed hulls over a number of years. Pulling all the vines growing in that was a chore and a half. Dad watches us do the work he can no longer do and pets our dogs. He still hates that we are Christians and, much worse, Republicans, but maybe he is coming to peace with it. It is amazing how willing to work hard my sister's girls are. I am jealous that she has all these girls (six living) to play World of Warcraft with to talk with and to go to coffeeshops with. I have one that can only talk like a wookie and one that would not enjoy going to very many places with me. I had so much fun with my mother, going to art shows and sewing expos and going on long drives to take the wookie to a center to give us a week's respite and gardens and comparing notes on books etc, that I had hoped to have such a relationship with my daughter. Ah, well. God knows.
I was able to talk to my sister's youngest about why eye gaze hurts for her is because for her and me, eye gaze stimulates the amygdala in the brain instead of the limbic system as it does in most people. I explained how I practiced eye gaze until I had finally desensitized and she would need to do so also or people would not trust her.
Anyway, it was a good day of work, and altho I got tired, I did not get shuddery like I did last month when I pruned for a few hours and notched my lopper on Dad's wires.
Then we went to Starbucks and discussed Shatterworld with my sister and two of her daughters. One of them could not finish the third book because it was too depressing. More talk, and ok, ok, I'll write an epilogue, but it won't be my husband's epilogue. And Ralph in a morning consult at Sheri's restaurant had already persuaded me that an epilogue was required. So, I haven't finished writing Shatterworld after all, grumble, grumble. I am also truly distressed at how many people say that my husband's additions are useful. Glower. He says he is the editor and publisher, so he has the right. Glower deeper. He promises he will not mess with the books I am writing for my oldest son's universe. Good. And oh, I am adding some more conversation of Elder Chin in the closet, but again, it won't be my husband's sermon. The niece who couldn't finish the book will try again.

Thursday, March 4, 2010

I need to be fairer to my husband. He took the books that I had written fifteen years ago and that had been lost when the computer died, and collated the different versions on paper and retyped all of them for a Christmas present to me. Then he organized a number of critique group meetings and collated all the comments into one document. Then he plans to finance the self-publishing of said books.    That is love.   If he had not done that, Shatterworld would still be sitting in boxes in the basement.
We found out the last infection is by an antibiotic-resistant bacterium. Since the lab called my husband (I am too deaf to talk on the phone anymore) I don't know the name of the little bugger, but I would not be surprised to find out that it is a pseudomonas, which is what I caught in Rwanda a little over a year ago. So I started a new medicine, and for the first time in a few months, my sinuses have stopped draining and I feel like I might be alive after all.
Yesterday I finished the first version of a prologue to Killing The Siij. Jay of the Outrageous Fiction critique group suggested I do that instead of a lot of flashbacks. Bowmark's version of the events were covered in The Scarred King. Since I want all the novels set in Joshua's universe to be stand alone novels, it suddenly made a lot of sense to show the event where Bowmark and Risli crossed from her perspective. Yes! And I wrote half a chapter about the young garloon just before he went on a seek. He shall gain a name on the seek. What shall I call him? Writing this novel is a lot of fun, and I'm glad a found a critique group that is helpful after the one I belonged to for over a decade dissolved because of moves and jobs.

Tuesday, March 2, 2010

I am so tired of being constantly sick. I get one infection cleared up, and one someplace else shows up. On the other hand, I am feeling good about getting some good writing in on the novel Killing The Siij. I need to be working some more on proofreading the Trilogy and addressing the issues various people have brought up. And my husband keeps pressuring me to keep in his additions because they are so useful. And then there's the epilogue he wrote without consulting me at all. Well, he's a sweetheart and some of his ideas are good, but I still need to write in the additions the way I would and not the way he would. If I were to write an epilogue to the Trilogy, it wouldn't follow his history at all at all. He thinks the books are so important that he must contribute. And he's a teacher. And he likes to preach. I hate preaching in books, or so I think until my husband and others point out where I have preaching in the story. I thought that was dialogue when I do it.
Anyway, he wants this to be a collaboration; I want him to leave me alone. And then he brings up that if he hadn't typed the books for me, they would still be sitting in boxes and would never be published. Well, is that fair I ask you? What do facts have to do with anything? And... what I'm really sick of is being sick and being unable to accomplish much in a day.

Finished Darwinian Fairytales, Selfish Genes, Errors of Heredity, and Other Fables of Evolution by David Stove.   Huh. The man believes in evolution, but he does not believe in natural selection, or scarcely anything said by Darwin, his followers, and Dawkins and his followers. He points out the errors with closely reasoned arguments.
Odder by Dean Koontz: a fun, engaging read if you don't mind some murder and mayhem. The short and colorful disquisition of Indians and gambling casino followed by an extended metaphor was worth the price of admission.
I'm in Hebrews now. Forgot to mention I read a number of magazines such as WORLD magazine, Christianity Today, Fine Gardening, Fine Sewing, Cloth Paper and Scissors. Why should you care? I dunno.

And I forgot to mention that our houseguest/boarder is in the hospital again for a week. He's 84, and very sick. He's also a delightful man, and an elder in our church. I'm beginning to wonder how much longer we are going to have him. I'm always sad when he goes to the hospital. He's running the race well, as is his wife in adult care. But, you know, that last bit is such an uphill climb.