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.

No comments:

Post a Comment