Bah! And Other Things.

I haven't posted on this blog since July. Which certainly isn't to say that my life hasn't been affected by autism since then. I have just had no will to write about it.

It's been a long ass year, and the girls are dealing with it pretty well. We moved on September 6th, and they've dealt with it very well. They don't seem to miss the old place (we'd been there since December 2002 until September 2011). In fact, they seem to really like the new place.

However, I'm not dealing with all of the changes so well. I don't like seeing my kids growing up (as weird as that may sound). I don't like puberty. I don't like the fact that we will have to go to another school next year because the district pretty much told me they have nothing appropriate for the girls past the seventh grade.

I don't like not knowing what the future holds. I've been dealing with the fact that I won't be able to keep and protect the girls forever. If for no other reason than the fact that I will die some day.

But, also because I can't keep a "regular" full time job with them. I can't afford much of anything since the move. I haven't lived on my own since 2002. Within two months of moving I've lost my main source of income. I'm struggling to figure things out at this point, but I have come to the conclusion that I have to be able to make it, so I will.

The girls are for the most part oblivious to my depression at dealing with such things (or so they let on). That is a good thing. I like that they don't have to worry about this part of life.

I've really connected with some other parents of kids with autism (or as I call them, autism parents) online. I met a mom of a newly diagnosed child, and it feels good to be able to help her out with information when I can. Still, it feels like a very lonely and isolated world of autism that the girls and I contend with. Or rather, that I contend with, because most of the time they are pretty happy.

The School Year is Almost Over

I'm back to that slightly evil feeling I get when I wish the school year wasn't over. It's not that I don't love my kids and enjoy being around them. It's just that they get bored easily and I have trouble entertaining them. Then things can get ugly.

For instance, when bored, their hobbies may include:

• throwing temper tantrums for no apparent reason
• going to the bathroom every 5-20 minutes and getting naked/making a mess
• fighting over the TV remote, ipod, and/or my cell phone
• mindlessly eating snacks
• sneaking out of the room I'm in to get into something they shouldn't be

I work from home the majority of the time, so this can make my work situation a smidge less than optimal. Also, I feel guilty for working instead of doing things with them. Then when I'm doing things with them I'm thinking, "I need to get to work!"

Anyway, whether or not I'm ready, schools out in roughly two weeks.

Autism Awareness Month

I've gotten pretty far out of the loop on advocating, attending rallies, and other autism activities. I feel kind of guilty about that. Then I realize that I do the best I can for my daughters every day, and that is helping out with autism. I try to let them experience life, even though it is rough with their abilities sometimes.

I always feel like I'm not doing enough. I wish I could handle them 100% by myself, but I know I can't. I need help, but at the same time I resent needing help. But the mature side of me knows that what is best for the girls is accepting help when it is needed.

Each parent and caregiver is different, so I can't claim to speak for them all, but here are some things I'd appreciate others knowing about autism:

• Not all people with autism have special skills or are like Rain Man. Less than 1% are considered autistic savants. And no, my kids aren't in that tiny group. 
• Kids with autism may appear "bratty" in behavior but most likely they are having a meltdown that they can't control. Staring at them will only embarrass/enrage their caregivers and companions.
• Offering to help is fine. Offering holier-than-thou or sarcastic commentary/advice is not fine. 
• Asking questions is okay, as long as my kids aren't running amok or having a meltdown. I am very open and love to talk about autism with people who are genuinely interested. Just know that if my kids are present I'll probably be very busy keeping them on task.

I hope I can get more involved in the autism community as my daughters get older, but they will always need cared for so that may have to stay a lower priority for me for some time. I encourage and appreciate what others can do to spread awareness and stop prejudice. Thanks for your help if you've done your part.

More Joys of Puberty! (or Will I Survive the Next Six Years?)

The girls are having a rough time, I'm assuming because of hormonal fluctuations. We haven't reached the big M yet (or P, depending on what you call it). I'm thankful for that.


However, we have achieved some super-mega fury tantrums. I have a big bruise on my arm where Celest pinched the holy-heck out of me. She was biting, pinching, and hitting both herself and me. That's after she tried to hit Lotus as well. After about 30-45 minutes the rages pass (with or without the help of some calming medicine).

Lotus has a more sneaky method of unleashing her fury on me. She acts like she wants me to sit next to her and cuddle her. Then she'll lean toward me for a kiss. Next she allows her true intentions to be seen: she grabs my head and mashes it into her head. And, if I'm really lucky, she'll pull my hair and try to head butt me in the face.

Good times are had by all. : )  Honestly though, I hope that this phase passes soon. And/or that I find a better way to end the bad moods more quickly.

Ah, the Joys of Puberty! Revisited...

Celest has recently discovered that she can see her "booty" in the bathroom mirror if she turns her back to the mirror, juts her hip out, and turns her head around to see it. And she certainly enjoys seeing it. I'll check on her if she seems to be taking too long in the bathroom and usually she has stripped down to her birthday suit, struck a pose, and is admiring her booty. (It'd be me that told her it is a booty. Maybe not such a great choice, in retrospect. At least I didn't tell her it was a badonkadonk.)

It is too funny to catch her admiring herself in the mirror. I guess I am happy that she seems to have the self esteem that I never had.

Lotus doesn't seem overly concerned with her booty, but she has decided she's not going to be pushed around any more. She picks fights with Celest over the video game and TV remote, toys, art supplies, and anything else she can think of. Usually it is Celest starting the fight, but Lotus gives as good as she gets (and then some!). At some point I think she snapped and I picture her going to the window, poking her head out, and yelling, "I'm mad as hell, and I'm not going to take it anymore! You hear me, Celest?!"

Asperger's and World of Warcraft

A teen with Asperger's Syndrome got an NPC named after him in the game World of Warcraft because he found an error in the game and brought it to the developers' attention at BlizzCon.
Here's the story on Yahoo.

Of course if you read the comments there are a bunch of nobodies calling the kid a loser and a nerd. Also, they evidently think getting laid makes you a valuable and important human being; and by assuming this kid hasn't "gotten laid" he is a loser.

Which makes me wonder why having sex is seen as some sort of accomplishment and status symbol. People who don't do it are considered losers or somehow less than those who do it. Honestly, if you think about it, it takes very little skill to have sex. Unless you are trying to conceive there is no purpose for it other than recreation. Yet, playing video games for recreation (which, having done both activities for recreation, I find that playing video games is more engaging and challenging most of the time) makes you a loser. Hmm. Something doesn't add up with those equations for me.

Anyway, I thought it was pretty neat that he was able to overcome his Asperger symptoms of social skill difficulties and verbal difficulties to speak in front of a large group of people and to have the guts to call people out on a mistake. : )

Lots of Things

I've been having trouble finding motivation to work on things, so I haven't written on  this blog in a while. The girls have done plenty of interesting, silly, frustrating, and exhausting things though.

I feel like this year has just been exhausting for me, both mentally and physically. The girls are going through puberty and don't really understand what is going on in their bodies. They are looking more like teenagers now, but they still have the cognitive abilities of younger children. It's a difficult situation for me to handle. Even though I've known this is the case for quite some time, it is still hard for me to accept.

The girls are happy much of the time, but they miss out on lots of little and big things because of their autism. I can't take them out to do fun things unless I have someone to help me, which is really frustrating. When I do take them to do things I get exhausted and stressed out. I enjoy seeing them have fun and do new things though.

This past Saturday we went to a farm. The girls got to ride a horse, collect chicken eggs, and pet and feed different animals. The farm owners had sliced apples and sweet potatoes to feed the animals. When they gave Celest an apple slice to feed the baby deer she ate it herself. She proceeded to "help" the animals eat the apples. She'd give a slice to an animal then have one for herself. Or she'd take a bite then feed it to the animal.

There was a funny turkey that would gobble if you said "gobble, gobble, gobble" to it. Celest had lots of fun with him.

By the time we were getting ready to leave Celest was getting upset and talking about emergencies. She kept saying, "Emergency please! Emergency!" She comes up with some strange requests. : )

Lotus got upset too, but I'm not sure why. She was hitting her head and crying, but by the time we walked to the car she was fine.

We went bowling the Sunday before that weekend, and the girls both had lots of fun. I am happy that I can take them out for things now, but I get depressed when I think about how difficult it is and wonder if I won't be able to do these things in the future.

I am trying to focus on what we can do now and enjoy all the little moments. Unfortunately I tend to be pessimistic and depressive, so I continuously have to redirect my thoughts.

Jett Travolta

John Travolta finally admitted that Jett had autism. Many parents of kids with autism were pretty convinced that Jett did have autism, but John Travolta denied it. He said Jett had Kawasaki disease (a disease involving inflammation of the blood vessels and high fever), which he may also have had at some point in time.

After all of the horrible pain his family has gone through, he decided to not pursue the extortion charges against the paramedic that arrived to treat Jett and a Bahamian politician.

I guess I am happy that he finally confirmed it, as I don't think autism is anything to hide or be ashamed of. Of course, I don't think John had to "admit" to anything per se, but by repeatedly denying his son had autism it seemed that he felt the need to hide something or maybe he was in denial.

Really it's none of my business, or anyone else's for that matter, but since he is a celebrity we know more of his personal life than we need to. I just hope that his family is able to remember the good times with Jett and let their new son know about the brother he never got to meet.

Super Duper vs. Mattel

An awesome special needs product company has been sued by Mattel for using the words "Say" and "and Say" on some of their materials. Mattel thinks they are ripping off the See 'n' Say toy.

Aside from the fact that the products with the words in question don't make sounds and don't have a pull handle, these materials are catalog and internet sales only.

You're not going to walk into a Toys'R'Us and find a speech pathology game (to use an example) called "See It!, Say It!" and think to yourself, "Hmm, my kids just loved that See'n'Say toy. This must be made by the same company. I'll buy it because my kids had so much fun with the other toys by this company!"

Mattel already won some money from Super Duper, but now they are trying to make them destroy all of the materials that currently have the words "say" or "and say" on them and produce all new copies of the materials with new titles. This, in addition to the money Mattel is suing for, would probably bankrupt the company, I'm guessing. They aren't a huge business.

I've ordered from them several times. They have items that are great for kids with autism, speech/language delays, and other special needs. I hope they win their appeal.

Here is an email I received from the company asking for help distributing this info, so I thought I'd share it:

This message is NOT an advertisement. It concerns the Super Duper-Mattel case.

We at Super Duper ask that you consider helping us in our fight with Mattel over the use of the words SAY and AND SAY in our product titles.

If you are a member of any state or national organizations, please encourage them to contact me, Thomas Webber, and join with other organizations in support of filing an amicus brief (friend of the court brief) with the U.S. Supreme Court, asking the Court to hear Super Duper’s appeal. I will explain the rest.

My email is tomw@superduperinc.com and my cell phone is 864-884-1079.

Thank you for taking time to consider helping us.

Thomas Webber

This is a special message from Super Duper® Publications ©2010 dealing with the Mattel case.

I also copied this press release from Newswire.com:

Mattel wants Small Special Education Co Super Duper to Pay $5.46 million, and More...

Not satisfied with a $400,000 verdict against small special education company Super Duper Publications (based upon SD using the word SAY in some of its special needs product titles), Mattel has asked the trial court to make Super Duper pay $5.46 million dollars in attorneys fees and costs, plus stop Super Duper from selling these SAY products until it takes SAY out of the product names.

At trial, Mattel lost on two of the claims it brought against Super Duper (alleged unfair competition, and alleged fraud before the federal Trademark Office), and also lost on its trademark and infringement claims relating to eight (8) of Super Duper's fifteen (15) SAY titles.

Despite the mixed verdict, Mattel wants Super Duper to fully reimburse it for all of its fees and costs of the lawsuit.

In addition, Mattel has asked the trial court to permanently prohibit Super Duper from selling seven lines of its SAY products until Super Duper changes the names in the titles of these products to something that does not use the SAY word. If the court grants this request, Super Duper would have to destroy hundreds of thousands of dollars in special education product inventory, stop selling these products indefinitely, and spend hundreds of thousand of more dollars to replace these products with ones that have new titles.

Thomas Webber, co-owner of Super Duper, has previously indicated that Super Duper will appeal the $400,000 judgment to the Fourth Circuit Court of Appeals because Super Duper believes it has done nothing wrong in using the SAY word on product titles that are directed specifically to teachers and parents of autistic children and other children with speech and language delays or disabilities.

Mr. Webber also stated that should the trial court grant Mattel’s request for $5.46 in attorneys’ fees and costs, Super Duper will ask the Appeals Court to suspend collection of this sum until the appeal is heard. He further indicated that If the trial court orders that Super Duper stop selling the SAY titles involved in the judgment, he will ask the Appeals Court to allow Super Duper to continue to selling these products until the Court renders its decision on appeal.

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.

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...

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...

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 :http://www.associatedcontent.com/user/1155/laura_munion.html)

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 :http://www.associatedcontent.com/user/1155/laura_munion.html)