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Friday, November 21, 2008

Something Happy...

Some pictures of the girls and me from this summer. Celest is in the top photo and Lotus is in the bottom picture. :)

Wednesday, November 19, 2008

This Year’s People Who Suck

I know the year isn’t over yet, so there’s still time for someone to do or say something really stupid (with regards to autism). However, I thought I’d take a few moments to highlight some of this year’s People Who Suck. I thought about labeling them a**holes, but I thought that wasn’t really accurate…

Amanda Peet- I’ve already mentioned her, but I can’t have my list complete without mentioning her again. Here’s her insight on not vaccinating your children: "Frankly, I feel that parents who don't vaccinate their children are parasites." Yep, we’re mooching off of your immunity. Never mind that I am fully vaccinated. Never mind that my children had most of their vaccines (which, incidentally, sparked yeast growth over their torsos, private areas, and face; gave them diarrhea-like bowel movements for about three months; and coincidence or not, coincided with their regression in language and behavior).

Thanks for passing your judgment. Oh, but she did “do her homework”. More from her Cookie interview, where she tells us about how speaking to Dr. Paul Offit cleared up her concerns: "Once we had spoken, I was shocked at the amount of misinformation floating around, particularly in Hollywood," says Peet, who quickly boned up on the hot-button controversies surrounding the topic, including the unproven link between certain vaccines and autism; the safety of preservatives like mercury-based thimerosal; and the fear that the relatively high number of shots kids receive today can overwhelm young immune systems. Her conclusion? Well, not only is Frankie up-to-date on her vaccines (with no staggering), but her mom will soon appear in public-service announcements for Every Child by Two. "I buy 99 percent organic food for Frankie, and I don't like to give her medicine or put sunscreen on her," says Peet. "But now that I've done my research, vaccines do not concern me."

I put unproven in italics because the link is just that, “unproven”. Meaning it hasn’t definitively been proven to be or to not be a cause of some cases of autism. Then again, it’s more convenient to see only the side that proves your point…

Dennis Leary- In his book, Why We Suck, he has a chapter titled autism schmautism (not sure of his spelling on the second word). He tried to defend his paragraph that was “taken out of context” by media on the Daily Show, but he still comes across as a misinformed jackass. He contends that there is a big problem of incompetent parents getting their children labeled with “low level” diagnoses of autism and Asperger’s Syndrome so that they can have an excuse for having bratty, misbehaving children. He said that he has known a person with autism for a long time and that he understands that it is a serious condition, but that it’s the families who did a crappy job raising their kids and are looking for excuses, like unwarranted autismdiagnoses, that he is trying to bring attention to.

If he really wanted to do any kind of service for parents or people with autismhe could’ve left this chapter out of his book or written about how autismis a prevalent condition that is poorly understood and underfunded in research. No, he’d rather tackle an issue that he says is very prevalent: bad parents who shop for diagnoses that make them feel better about the poor job they do raising their children.

Where he got this information about fake diagnoses he didn’t really elaborate on. Maybe it’s one of those things you just learn when you are wealthy and famous.
Michael Weiner (aka Michael Savage)- In July Michael Savage spoke about autismas if he had some clue as to what it is. Here is his definition of autism, “You know what autismis? I'll tell you what autismis… In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autismis."

He also said that if we just told our kids to suck it up and act like a man that they’d be fine. I’ve been keeping up on “cures” for autismfor some time now, so I decided to give his theory a try. One night when Lotus was lying in bed trying to pull her hair out by the roots (which she does to fight off sleepiness), I told her to quit being a putz and act like a man. It didn’t work. I guess I must have one of the 1% of children with “real” autism.

Dr. Paul Offit- You’d think that he got paid to reassure the public that vaccinations are safe, very, very safe. Oh, wait a minute. He sort of does! Let’s look at Dr. Offit’s credentials (underlining mine):

Paul A. Offit, MD is the Chief of the Division of Infectious Diseases and the Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Dr. Offit is also the Maurice R. Hilleman Professor of Vaccinology, and a Professor of Pediatrics at the University of Pennsylvania School of Medicine. He is a recipient of many awards including the J. Edmund Bradley Prize for Excellence in Pediatrics bestowed by the University of Maryland Medical School, the Young Investigator Award in Vaccine Development from the Infectious Disease Society of America, and a Research Career Development Award from the National Institutes of Health.Dr. Paul A. Offit has published more than 130 papers in medical and scientific journals in the areas of rotavirus-specific immune responses and vaccine safety. He is also the co-inventor of the rotavirus vaccine, RotaTeq, recently recommended for universal use in infants by the CDC; for this achievement Dr. Offit received the Gold Medal from the Children’s Hospital of Philadelphia and the Jonas Salk Medal from the Association for Professionals in Infection Control and Epidemiology.

Dr Paul Offit was also a member of the Advisory Committee on Immunization Practices to the Centers for Disease Control and Prevention and is the author of four books titled Vaccines: What You Should Know (Wiley, 2003, 3rd Edition), Breaking the Antibiotic Habit (Wiley, 1999), The Cutter Incident: How America’s First Polio Vaccine Led to Today’s Growing Vaccine Crisis (Yale University Press, 2005), and, most recently, Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases (HarperCollins, 2007). A fifth book titled Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure will be published by Columbia University Press in the fall of 2008.

Hmm, do you see any sort of connection? Like, maybe why he is such a fierce defender of vaccines is because his whole career and livelihood depend on the sale of vaccines? And do you sense just a hint of animosity towards those who disagree with him? I mean, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure”. That title is more than a little offensive to me. How about : Bad Science, Risky Medicine, and the Search for Prophets: An Industry More Concerned with Money than the Well Being of Children? I think that would be a good title for an investigative journalism piece that delves into the world of vaccine creation and pharmaceutical companies.

Take for instance, just this one example of the due diligence of pharamaceutical companies. This pertains to the “safe” preservative thimerosal, you remember, the one Offit convinced Amanda Peet is perfectly safe. Thimerosal’s safety was tested on adults with meningitis. The following information is from a lawyer’s investigation into thimerosal for a case:

In 1928, Dr. G.H.A. Clowes, Director of Research of the Eli Lilly Co., assigned Lilly scientists H.M. Powell and W.A. Jamieson the task of completing animal toxicity studies in anticipation of plans to sell the product for human use as an antiseptic and/or antibacterial agent. Exhibit 4 (Exhibit ELI-392FF). Powell and Jamieson performed a series of short-term experiments on animals to ascertain what acute and immediate toxicity might be observed. They made no effort to determine what injuries would results from longer term or lower level exposures.
On July 24, 1930, Powell and Jamieson submitted their results for publication to The American Journal of Hygiene, and their article was published in January 1931. Id. In one section of the published paper, Powell and Jamieson noted:

Toxicity in man. Merthiolate has been injected intravenously into 22 persons in doses up to 50 cubic centimeters of 1% solution. . . The toleration of such intravenous doses indicates a very low order of toxicity of merthiolate for man. This information has been supplied through the kindness of Dr. K.C. Smithburn of Indianapolis who has had occasion to use merthiolate in a clinical way. Dr. Smithburn stated in these cases ‘beneficial effect of the drug was not definitely proven. It did not appear, however, to have any deleterious action when used in rather large doses intravenously when all the drug entered the vein.
Nevermind the fact that these patients would all later die from meningitis; whoops, no source of information on long term effects!

After this “study” was completed Eli Lilly went on to tout thimerosal, or merthiolate as it was then called, as being a safe, non-toxic substance. However, ten years later, the military decided it didn’t agree:

v. The 1940’s: Additional Recognition of Potential Hazards, Especially for Sensitive Persons
In 1941, the Lilly staff received an article entitled "Chemotherapy of Bacterial Endocarditis." The article advised Lilly scientists that merthiolate should never be given more frequently than once in 10 days due to its toxicity and potential hazards. Exhibit 12 (Exhibit ELI-392P(2)). Lilly also sold large amounts of merthiolate to the United States government for use in the war effort from 1941-1945. "Merthiolate was an army standard issue and 22 tank cars of the popular antiseptic were dispatched from (the) McCarty Street (plant) during the war." Due to military regulations, and as a result of the toxicity of the ethylmercury preservative, Lilly was required to label the product "POISON." The "POISON" language was only added to cartons of products in certain instances, as when required by the government, and Lilly continued to fail to warn about known hazards of the product for its non-military sales and for sales related to vaccines. Exhibit 13 (Exhibit ELI-228).

So the military warranted merthiolate a “poison” while Eli Lilly kept selling it to the public as “non-toxic”. Hmm, that seems a bit unethical, at the very least…
How about this information:

The 1970’s: Lilly Lies to the FDA in a Bid to Avoid Regulation
In 1972, Lilly received an article that confirmed that its product, used as a preservative in vaccines, caused 6 deaths from mercury poisoning. Exhibit 29 (Exhibit ELI-392K(1)). "The symptoms and clinical course of the 6 patients suggests subacute mercury poisoning."

Shortly thereafter, the FDA required Lilly to provide all the information at its disposal concerning the potential toxicity of thimerosal. Lilly reported to the FDA, in a February 14, 1973 letter, that "as with other chemicals of its generation, information relating to safety and efficacy of thimerosal in animal models is sparse." Exhibit 30 (Exhibit ELI-392). But Lilly went further, advising the FDA that the product was non-toxic and cited the fraudulent Jamieson and Powell study of 1930 as its supporting scientific evidence. Exhibit 31 (Exhibit ELI-392QQ). Despite its knowledge to the contrary, Lilly continued to use the incomplete Powell and Jamieson version of the Lilly/Smithburn experiment to support its conclusions that the product was safe and "non-toxic."

ix. 1976: One Example of Lilly’s Efforts to Convince the Public that Thimerosal is Safe.
On April 27, 1976, Lilly’s Manager of Industrial Sales, W. Orbaugh, responded to a letter from Rexall Drug Company in St. Louis, Missouri. Rexall Drug had been concerned about the potential hazards of merthiolate/thimerosal and had requested, pursuant to the trademark/marketing agreement maintained with Lilly, permission to place the following warning on the product:

Frequent or prolonged use or application to large areas may cause mercury poisoning.
Okay, so it’s “non-toxic” but it can, and has, caused mercury poisoning and death. Oops! That’s just a minor “fact” that we can sweep under the rug.
That’s all of my people who suck, for now anyway. If Bill Frist hadn’t crawled under a rock, he’d be on my list too.

Thursday, November 13, 2008

The Fun Continues (or Why I Really *love* People!)

Talk about fun for your birthday! I didn’t just have a *fun* birthday I had a whole, fun birthfortnight! Oh yeah!
Let’s start at the beginning, so to speak. The day before I was supposed to go out of town for the weekend, I started to feel a little sick. My voice was getting crackly and I was feeling a little congested. My mom and I ended up staying up until 6 am working on my Halloween costume. I was going to an anime convention for the weekend, and I was going as Sailor Saturn (from the Sailor Moon anime).
So, I’m a bit grumpy that morning when I have to get up an hour after I fall asleep to get the girls ready for school. I took a nap after they left and was feeling a little less grumpy. Yay! Unfortunately my congestion and cold had worsened some.
Most of the day Friday I just napped. On Saturday I napped the first half of the day, then dressed up and walked about the convention with my friend. I felt okay, but I could only whisper, which was annoying.
So, early Sunday afternoon we head home. When I get there I find out that Lotus decided to crawl into the dryer while my mom was folding laundry in another room. My mom heard the girls get into the laundry room, which had a sliding lock on it, and she went to get them out; unfortunately Lotus had just enough time to get a nasty burn on her arm. I put burn medicine on it later some antibiotic ointment.
I took the girls to school the next morning because I overslept and missed the school bus (again!). I showed the teacher and aides the burn, and I told them what had happened. I didn’t think anything would come of the incident, but I was wrong. The school nurse decided that Children’s Services needed to be called, even though later, other school officials assured me that they didn’t think that I was a “bad” mom or that I could have done anything differently. Hmm, yep, I think that’s the mission of children’s services; to investigate accidents. No? Oh, I must have been confused. This certainly could have been filed as an unusual incident, and I wouldn’t have minded. But neglect? Especially when I am told by the people who made the call that they don’t really think that I was negligent. Hmm, maybe I’m just silly in the head, but they either lied to me or they lied to children’s services; either you think I’m negligent or you don’t. It’s not really a “grey area” type of thing.
I kept missing the social worker when they stopped by unannounced, so I had to call and make an appointment. He said that the complaint was filed as "neglect" because of the accident. Hopefully it will be an open and closed deal, since there wasn’t any neglect actually involved. Anyway, I have installed a key locking doorknob on the laundry room, so the girls will have to be able to pick that before they could get in the room. Also, I’ve been shutting the breaker to the dryer off when it isn’t in use.
To add to the fun, I had a fever from my cold-turned-sinus-infection, and I was very tired and felt like crap. Wee!
When I took Lotus to the doctor on Tuesday there was a screw up at the sign in desk, as a lady came in after us and talked to the receptionist but didn’t write down her child’s name. The receptionist scratched off our name without pulling our charts, so we subsequently sat there for 45 minutes before I asked how long it’d be until we were seen. We were called back pretty much right away. Lotus was agitated and didn’t want to cooperate with the doctor, who repeatedly chastised Lotus and me for not being able to hold still while he examined her (hmm, restraining an anxious, frightened ten year old with autism isn’t as easy as you might think, especially when you are exhausted, sick, and near tears).
Okay, so after the fun at the doctor’s office, you’d think I’d had enough for the day. Nope, not me! I took the girls to pick up the medicine at Kroger later that day. Unfortunately Lotus decided to lie down periodically and not get up. I had to haul on her to get her to move. The nice, friendly community folks who were shopping that day were so helpful. They slowed down to stare, point, shake their heads, laugh, and make knowing glances at one another. I was obviously a bad mom with spoiled brats. Yep, that covers it. My kids and I look “normal” so we must just be spoiled kids with an inept mom. I ended up leaving without getting the prescription because I couldn’t keep the girls waiting for twenty minutes while they were agitated and uncooperative. (By the way, thanks to all of you who laughed at my family in front of your own children; you set a great example of tolerance and understanding for our future generation!)
There was one person who offered to help, but even he looked skeptical when I told him no. I appreciated the offer, but having a stranger get into the mix would most likely have only made it worse. Or Lotus might have hit him to get him away, which I didn’t want to happen.
On to more fun! I am probably going to have to use the money I was planning on using to get the girls' Christmas presents to buy a dryer, since my old one keeps getting clothes stuck in around the edges and when you pull them out they tear (and it keeps making a squeaking noise). I haven't bought them a single thing yet but... when it rains, it pours. Also, my car's heater has quit working. Yay! Pretty much all summer I was without AC, and now no heat. My car doesn’t like anything outside the 60-70 degree range, I guess. Also, when I got back home I had to snake my toilet because the girls (probably Celest- she's generally the instigator of these sorts of things) flushed at least one, if not more, whole bars of soap down my toilet. It's still not running perfectly, but it's better than it was. Someone told me to try putting a pot of boiling water down toilet, and I think I'll try that to see if it helps clear out the last little bit of soap. Also while I was gone, my garbage disposal quit working. I was thinking that I might have to get a new one, but it turns out that it just blew the fuse on the bottom of the unit. When I ran it, it did seem to be running more loudly, so I think I'll just try to avoid using it. We just put in a new disposal unit about two or three years ago though, so I don't know what the deal is.
And today I got a call from the psychologist that oversees the girls' ABA programming, telling me that we need to have a meeting to see where we go from here because my team and I haven't been cooperating with our new consultant. We missed a team meeting because the consultant insists that we have the meeting from 3-5 on Tuesdays (which is the only day we could all agree on). Problem is, the therapists can't get here at three and the girls are still at school. Argh! Why, why, why? Also, "it would be more convenient" for them if I could meet them at their office since they are so busy. Nevermind that it takes me about 35-40 minutes to get to their office. I don't have anything better to do. Nope, not a thing.
/end bitching

Friday, October 24, 2008

More Silly Things...

I want to share another silly thing that Celest said the other day.

She had sneaked into my vitamin cabinet (Tangent: AAAHHH! Does anyone know a safe and effective child lock for a cabinet besides the baby locks that you have to release with your hand to open? And that isn't a lock and key?). She found some old ear plugs that I had bought for when they were taking swimming lessons, which, of course, went unused. They were blue foam like circles that you form into the shape you need to plug your ear.

Anyway, I think Celest thought they were bubble gum and she had put one in her mouth. I saw her, freaked out, and told her to spit it out. Instead she did a cartoonish gulping face and sound when she hurriedly swallowed it. I picked up the other ear plugs and put them in the garbage after I'd admonished her that it isn't safe to eat ear plugs.

Later that weekend she went to my mom and said, "I want ear plugs please."

My mom told her, "No, you can't eat ear plugs!"

To which Celest replied, "Delicious!".

Hmm, now if only healthful foods were so desirable to her. Actually she's a pretty good fruit and veggie eater, but lately she's been wanting to eat inedible things. I don't know if that is considered pica or not, but it is driving me crazy!

This story also reminds me of something she said several years ago. She had a cold and had started to pick her nose because it was congested. I tried to teach her to blow her nose, but she couldn't quite get it. So, I would just have her wash her hands well every time I caught her picking her nose.

Then she decided to take it a step further: she would put her finger in her nose then in her mouth. I would tell her it was dirty and yucky and make her wash her hands. Then one day she stood in front of me, put her finger in her nose, then licked the finger, and declare, "Kid delicious, mom nutritious."

It was gross, but it was also so funny that I couldn't help but laugh. Evidently Kix isn't the only kid delicious, mom nutritious option out there...

Thursday, October 23, 2008

Parenting-genre Magazines and Their "Great" Advice

If I read one more vaccine safety article quoting Paul Offit M.D. I'm going to scream (or punch something, or vomit, or maybe all three!). Hmm, do you think he may be the slightest bit biased about vaccine safety and effectiveness? No? Hmm, well he is a co-patent holder and co-creator of the Rotavirus vaccine, which is (surprise) on the "mandatory" vaccine schedule.

Let me back up at this point and say that I am not "anti-vaccine". I am, however, "anti-mandatory-vaccination". There is so much mis-information about vaccines that it is depressing and angering.

A few of my biggest vaccine-BS issues are:

  • Vaccines no longer contain thimerosal. While it's true that some vaccines are thimerosal free, most have a reduced thimerosal content from what they previously had. It is called "trace amounts". However, each person's toxin filtering system is different. Some people can handle much more than others. Don't be fooled by people who say vaccines are "thimerosal-free". If you are concerned about the content of your child's (or your own)vaccine, ask to see the medicine insert that came with your vial. Also, most flu shots aren't thimerosal free. Rhogam, which is given to pregnant women who have Rh factor, often contains thimerosal.

  • Vaccines guarantee immunity. Nope, they don't. What medical procedure is 100% effective with no side effects? Pretty much none. So just because you are vaccinated doesn't mean you'll never get the disease. I have an adult friend with a healthy, "normal" immune system who is fully vaccinated, and she's had whooping cough twice.

  • You have to vaccinate your children to have them at public schools. In almost all U.S. states this is false. Despite living in a state that offers the option to decline vaccines due to religious, medical, or philosophical reasons, I've received two letters from schools in the past telling me that if I didn't get my daughters their booster shots by a certain date that they'd be unable to return to school. It was a form letter that was worded in a very officious and pushy tone. I don't understand how this is legal. I printed out and highlighted my state's statutes regarding immunization and sent it to school. No where on the form did it even hint that you could decline vaccinations and still send your child to public school. I wonder how many parents have given in and gotten boosters for kids because they thought that their child would be denied a free, public education without them?

  • Vaccines have all but irradicated horrible childhood diseases and the deaths caused by them. Hmm, I wonder if increased cleanliness, clean water sources, and advanced medicine have had any effect on the spread of disease? Nah, it's solely the wonder of vaccinations that have kept us disease free...

  • Gardasil! Ahhhh! This vaccine might be the one that pushed me over the edge. Let's look at a few facts here (that are conveniently left out of the "One Less" commercials): there are over 100 different strains of HPV! Human papillomavirus can cause both genital and non-genital warts. There are 13 strains that lead to cervical cancer, two of which are thought to cause about 70% of all cases of cervical cancer. Gardasil may grant immunity to four strains of HPV (the commercial uses the word "may", so that's why I included it and italicized it). Still, you need to get a pap smear every year to check for cervical cancer and other health issues. And, did you hear about the young girls and women who have developed Guillian-Barre Syndrome, paralysis, fatigue, fainting spells, and even some who have died from the Gardasil vaccine? Nah, I didn't think most people had. Did you hear about Merck lobbying to get Gardasil on the "mandatory" vaccine schedule for girls? Hmm, nothing seedy about this. Nope! Hurry, get your Gardasil now! You may get protection against four of over one hundred strains of a virus that may or may not cause one of the most curable cancers known to man!

Edited to add: Blogger decided to quit working while I was in the middle of this post and I hadn't copied it in a while, so a bit of my diatribe got cut off! Argh! In a nutshell, I was: pondering why exactly infants and toddlers need to be vaccinated against Hepatitis B, which is primarily spread via sexual activity and needle sharing; bitching about Amanda Peet's interview in Cookie magazine in which she sang the praises of Dr. Paul Offit and called parents who choose not to vaccinate their children "parasites" (she later sort of apologized, while emphasizing the importance of everyone getting vaccinated); how I'm not anti-vaccine, but I am pissed about information about vaccine's potential side effects not being given to parents; and I bitched about how schools in states that allow parents to decline vaccination aren't very supportive or forthcoming with parents when they send home letters saying your child will no longer be able to attend school unless they get vaccinated by a certain date.

Enough ranting for now!

Saturday, October 11, 2008

A Touch of Violence

My kids seem to be going through a patch (please let it only be a patch!) of violence. Generally, they tended to only hurt themselves, one another, or me. But lately they've been branching out to others, most specifically their teacher and teacher aides. :(

So far it has involved slapping, pinching, biting, and the occasional head butting. :( We are setting up a behavior plan to try to nip these things before they get worse or become habits (dang that muscle memory sometimes!)

I suppose we'll wait and see. Redirecting, restraining, and waiting out the storm are all that we seem to be able to do for now...

Friday, September 26, 2008

Another Funny Comment

Celest was looking through a kitchen drawer the other day, and she found a basting brush (which looks like a giant paint brush). Since I never have used it I told her she could play with it.
She got really happy, lifted it in the air, and announced, "This is my sanitary napkin!" She was so serious, even officious, as she made her pronouncement that I cracked up.
We've been working on puberty related issues, so I'm assuming that someone at school called a "pad" a "sanitary napkin". :)

Sunday, September 14, 2008

When We Don't Think They are Paying Attention...

One of my daughters is nonverbal, so she uses a Vantage speech device. She usually only requests things (generally food) or stims on the sound of the device.

However, the other day my mom was watching the girls for me and she told me this story:

Lotus was on the couch, minding her own business and stimming* on her speech device. Celest was arguing with my mom about something (probably going outside or getting more snacks). My mom was raising her voice, trying to get Celest to listen to her.

Without really looking in their direction or giving any outward appearance of noticing the altercation between her sister and grandma, Lotus typed this on her Vantage, "Grandma yelling, yelling"!
The photo is from an old mess that Celest made with a ten pound bag of flour that was left out on the counter overnight...

Saturday, August 2, 2008

Desperately Seeking Slumber

This year has been rough. So far, I think it has been the worst year of my life. Maybe I'm being melodramatic. Still, that's allowed every now and again. I think it's cathartic to feel sorry for myself every now and again.

Anyway, the girls have had a tougher time than usual falling asleep this year. Generally we have sleep cycles that last 3-6 months; one cycle will be good and the next will be not-so-good. A good sleep cycle (remember, "good" is a relative term) entails getting roughly 6-8 hours of sleep, most of them occuring after midnight, for at least five or six nights a week.

A bad sleep cycle, on the other hand, is anywhere from 2-6 hours of sleep. Sleep can start anywhere from 10 pm until 5 am, and can possibly be interrupted multiple times throughout the night.

Bad sleep cycles affect all other facets of life: oversleeping and missing the school bus, gigantic messes being made while I am sleeping, grouchy moods, and other things of a generally bad nature.

This current bad sleep cycle is the worst we've experienced since the girls were infants. Earlier this year, when they weren't sleeping, but I was, the girls pursued all sorts of delightful activities. Let's see, there was the ever popular "rip the childlock off the fridge and destroy all of the food in the messiest possible fashion" game. Also, the "poop on the carpet and make a nasty mess of it" game. The most popular of all was the "plug the kitchen sink drain, turn on the water, then go pass out somewhere while the downstairs floors accumulate an inch or more of water game".

Generally, while these household Olympics are going on I am somewhere (generally the floor or my bed) in deep, deep REM sleep. I'm quite the heavy sleeper,which doesn't help matters any.

In our quest, or I should probably just say "my" quest for slumber, I've tried many actions. I'm not all that keen on using medication, but after just two months of this fun I threw in the towel and decided to try something.

We'd already used "natural" products to help induce sleep and relaxation, and they didn't work. We tried transdermal melatonin, GABA, inositol, valerian root, and other herbs and minerals with calming properties. My kids weren't falling for it.

Then we went the prescription route. First was Neurontin, generally used for those with Epilepsy. I thought it worked the first night, but it also could have been due to the fact that the girls had been up all day, since about 4 am, after only four hours of sleep. The next two weeks I saw no noticeable effect from the medication.

Then came Depakote, which is generally given to treat mania, Epilepsy, and migraines. It worked for the first week or so, then seemed to begin losing effectiveness. We upped the dose more, and again it worked for a week or so then seemed to not work. It also made the girls eat non-stop. They put on weight and retained water. Also, we had to have blood work done to see if it was overtaxing the liver. Yay!

Then came Clonidine, which is generally used to lower blood pressure. We used this for about a month and saw no noticeable results.

And finally came Ambien, which is meant for those who have trouble sleeping. We started with half a tablet: nothing. One tablet: nothing. One and a half tablets: some drowsy looking faces and the ever-present urge to fight off sleep. Two tablets: drunken behavior (staggering around, bizarre sayings, etc.) and sleep.

Even with an adult dose, the girls can fight off the urge to sleep for two to four hours. Once they get to sleep it isn't a guarantee that they'll stay asleep for more than 4-6 hours, but they generally will go to sleep earlier overall. I don't really enjoy giving them a sleep medication, but it has cut down on some of their late night shenanigans.

Unfortunately, when I went to refill our prescription I had a surprise: our insurance only covers 30 pills a month per child. So, this means that I'll have to fork over $120 or so a month if I want the full dose. And, it seems, the prescription was only written for 45 pills a month, which will still leave us 15 pills short, per child.

I desperately wish that I could give them my sleepiness. If I pawned my exhaustion off on them I'd be able to stay up about 18-22 hours a day and get all sorts of work done. Or goof off and play video games. Either way, it'd be a good deal. For now however I'll just have to keep (day) dreaming...

Sunday, July 13, 2008

Bruno Bettleheim and Autism

At one point, autism was thought to be caused by lack of love and attention from the parents, particularly the mother. Bruno Bettleheim was the man behind this erroneous theory of the “refrigerator mother”. Bruno was supposedly a Jewish psychiatrist who survived Nazi concentration camps in WWII.

However, it was later proven that he wasn’t a psychiatrist. He was in the construction business. His charismatic and commanding presence led others to believe him when he claimed that he was a psychiatrist. It was in the camps that he developed his theory about parents of individuals with autism by comparing the relationship between parent and child with autism to that of the Nazi officer and camp prisoner. He speculated that just as the concentration camp prisoners withdrew and became socially aloof and selectively mute due to the cruel and unloving situation that they were in, that the same could be assumed of children with autism. He drew his conclusion from his own experience, not a study.

He later noted that the parents of his autistic patients were “cold” and “detached” in his office. It is my experience that during diagnosis, parents can feel helpless and depressed due to their concern for their children. I know I was. However, Bettleheim concluded that this was why the child was autistic; their parents were cold and uncaring. However, I believe that there was a causal relationship. Bruno just had it backwards: the parents were aloof and depressed because their children were not developing correctly and they didn’t know how to help. Parents of autistic children were to suffer from this misunderstanding for years to come. Many families had their children taken away and put in homes because the parents were believed to be detrimental to their own children’s health.

Luckily, this myth has been almost completely dispelled. There are still plenty of emotional and psychological challenges that face parents of autists today. It is very frightening that a disturbed individual who was posing as a medical authority stigmatized parents and destroyed families for several generations to come with his hateful hypotheses. Many people interested in autism still aren’t aware of Bruno’s actual background. The hurt that this man caused by his speculations didn’t stop at just tearing families apart and causing immense guilt and grief to parents.

He also ran a rehabilitation program for children with autism. Many of the children weren’t technically autistic. He hit and verbally abused the children, according to accounts that several of the children corroborated after release from the program. By taking in children that didn’t actually have autism and “curing” them of their autism, Bruno gave the appearance of knowing what he was doing.

Of course some of the children evaluated after treatment were found not to have autism. It wasn’t Bettelheim’s doing though; they didn’t have autism to begin with. Bettleheim’s methods were spurious at best. The man ruined lives and caused a greater stigma for a disability than it already had for his own personal gain. I think that there are some lessons to be had from this. I am not suggesting that medical practitioners in general are frauds or fakes, but rather that it is a good idea to check credentials and question authority when something doesn’t seem right. I am glad that Bettleheim’s ideas have largely been dispelled, but I am sickened that they gained such notoriety in the first place.

(This writing also appears on Associated Content :

Mixed Blessings

When I first suspected that something wasn’t right about my daughters, I was nervous and anxious. When I realized they both had autism I was depressed and angry.
I love language and reading, so when my twins were a little over a year old I started trying games that would increase vocabulary, teach proper pronoun usage, and build conversation skills. I know that’s a tall order for a one year old, but the games were developed by speech and language experts.
It was then that I realized my daughters didn’t have the fundamental skills to play these games. Their attention would wander to anything else remotely interesting in the room.
It was also around this time that I realized my daughters were no longer using the words they used to know. No more “mom,” “cup,” “cookie,” or “ball.”
It’s been almost six years since autism became part of our lives. I’ve learned many things and met many wonderful people through my daughters’ autism that I would never have otherwise.
The biggest thing I’ve learned is tolerance and understanding. If I see another parent with a child who is throwing a tantrum or having a meltdown I don’t stare. I don’t make loud remarks about how I’d handle the situation differently. I know how embarrassing and frustrating it is to be treated as a spectacle in public.
A trip to the grocery store is all it takes to remind me of the ignorance of disabilities that the public in general has. If I can help on person understand my daughters and autism better, I hope that it may save another parent of a child with a disability a rude remark or stare from a stranger.
I’ve also learned that as long as I’m not intruding on someone else’s rights, I shouldn’t care what others think of me. If someone sees my children and me out and think that we act weird, oh well. I can’t educate everyone I meet everyday about autism.
Autism has been a mixed blessing; thought I’ve gained a tolerance and understanding that I may not have learned without autism, I know my daughters will face difficulties due to autism. Though as long as I’m alive, I’ll share the blessing of knowledge, tolerance, and understanding my daughters have given me.
(Note: I wrote this about two years ago; my daughters were diagnosed over eight years ago...)
(This writing also appears on Associated Content :

A visit to the library

“Shhh,” said the security guard hovering over my daughter and me. Like I hadn’t thought of that.

We were in the library for only a couple of minutes when my daughter decided to throw herself on the floor and start screaming, “Car! Car please!” This might not be that unusual for a two or three year old; my daughter is nine.

We’ve been patrons of this particular library for about six years. Most employees know that both of my daughters have autism. They are usually very helpful.
I’m not sure what this guy thought I was trying to do, as I wrapped my arms around my daughter and tried to get her to walk out of the library. I had even been shushing her myself. Yet there he stood as I repeatedly tried to carry, coax, or cajole my daughter out of the library’s otherwise peaceful atmosphere. Shushing us, but offering no help.

I finally was able to get her on her feet and hustle her out the door like a hostage taker, with my fingers pointed into her back instead of a gun. The security guard didn’t follow us out of the library, for which I was thankful. I’d had enough of his help for one day.

This wasn’t the first time that I’d had this particular security guard’s help either. On a previous visit to the library I had both of my daughters with me and one of them decided that she didn’t want to leave when I said it was time to go. She wriggled out of my grip and crawled quickly to the video section, where she promptly began to knock video cassettes off the bottom shelf.
I couldn’t get my other daughter to come with me to get the video vandal, so I left her standing by the returns desk while I ran to reshelf the videos and retrieve my first born. While I did that, Lotus thought it would be a great time to check out what is behind the counter in the employee section. Luckily for me there was a nice lady working at the counter and she kept Lotus out of things while I half dragged Celest toward the return area.

The employee offered to help me out to my car; she knew both of the girls had autism and was being genuinely helpful and compassionate. This is when the security guard decided that he had to escort us out with the employee. I know it is probably just a standard cover-your-a** policy, but I found it both humorous and insulting. What did he think I was going to do, mug the lady in the parking lot? Celest was more menacing looking than me, so maybe he thought she was going to try something.

I guess I should be happy that the library employees don’t lock the doors when they sees us coming, but I can be an ingrate sometimes. For now I’ve decided that it’s just easier for me to go to the library by myself. I’ll save the family trips for when I’m feeling feisty and energetic.

(This article also appears on Associated Content :