One Sick Mother

Show Business

This was a joke told to me by my uncle:

A guy walks into his local bar and is hit immediately by a dreadful smell, which isn't usually there.

"What's that smell?" he asked the bartender in disgust. A stanger; a smallish, skinnyish, unremarkable looking  man, raised his hand apologetically: "That's from me." he said. The stranger then went on to explain that he was with the traveling circus that had just rolled into town, and his job was elephant keeper.  The elephant, who didn't travel well, permanently had a dodgy digestion. Every morning, one of his tasks was to give it an enema. "you never get out of the way in time", he said apologetically (there is a lot more repulsive detailing of the man's job in my uncle's version of the joke, but you get the idea).

The local man was shocked. "You have to do this every day?  The man nodded "Sometimes twice a day". "But that's terrible!" exclaimed said the local man, utterly horrified. "Why don't you find a better job?"

Now it was the the stranger's turn to looked horrified. 

"WHAT....?  And leave showbusiness..?"

This post is in response to Dave Hingsburger's post on circus freaks. Because as my elephant story highlights, you don't have to look like a freak to join the circus, but you might get a better job there if you do. 

I have only seen the 1932 movie "Freaks" once, when I was a child (and it freaked me out then), but I have subsequently become kid of fascinated by it, particularly it's social impact, which had actually started before the movie: Some people had started to complain about the sideshows and their exploitation of people with differences, so many just shut down, ruining the livelihood of the performers who worked there.

The cast of the movie "Freaks".

Years ago, it was not considered demeaning to work as a freak in a circus or sideshow. It was an honest living and many of the people above made a good income and supported families. Yes, there was terrible mistreatment and exploitation of some individuals by ruthless handlers (isn't there always?).  However, there was also a community, friends, a sense of acceptance and belonging that came from being in a freak show that they would not have gotten in Suburbia. And -let's face it:

It was showbiz.

When the sideshows closed, many of these performers, who had visible disabilities and differences and were then left to try and fend for themselves with no skills and no community to support them.

It is quite sad.

The late Sandy Allen, who was officially the tallest woman in the world until her death last August, is one of my personal heroes. I remember seeing something about her on the telly, and it mentioned that at one point in her life, she had a job as a living exhibit in (I think) the Smithsonian Institute, as the world's tallest woman, where she sat behind a desk and spoke to people, educating them about her differences and similarities and about being kind to people who are different.  Ultimately, -although it was the Smithsonian (I think), how different is that job  than working in a sideshow?  The main difference is that there were probably more laughs to be had in the sideshow.  And funnel cakes.

The quality of this photo is not the best, but it is one of my favorite pictures of Sandy Allen, who stopped apologizing for her height and embraced it.  

There is a big difference between having a visible disability or (for want of a better word) deformity, and having an invisible one. I have learned this lesson hard as the mother of kids with invisible disabilities. Too often their differences are attributed to parenting or behavioral issues, because they look like everyone else. 

To have a visible difference is a constant reminder to everyone that you are different, and people often -for better or worse- treat you accordingly. Even when people try not to treat you differently, they still do it; -the deliberate 'not looking' thing they do or the sidelong glances. I look the same as everyone else, so I only really experienced this for myself when I was heavily pregnant and standing in a New York City subway car; how all those AB men in the seats would suddenly and pointedly fail to see me. There is now a blog dedicated to ignorant subway riders. It's great.

   

The advantage of having an invisible disability is that you can often pass for normal. This can be a disadvantage, too of course. I carry my cane all the time, and it does serve a a useful visual reminder to others that it is not ok to push past me or let doors swing back in my face (as it that were OK under any circumstances. It's not, but many people just behave that way)/

So there I was, researching sideshows and I came across this picture. The man, who is identified as Nels Nelson, is stretching out the skin of his face and he clearly has Ehlers-Danlos Syndrome.

 

I say "clearly" because skin that stretchy is a hallmark of the condition, although not everyone with EDS has it (I don't -in case you are wondering. My skin is stretchy, but not like that.)

In a way, folk like Mr Nelson, who probably could not have worked a "normal" job because of joint pain issues, had the best of both worlds: He had the income and community of the circus/sideshow -providing he wasn't exploited. Like the elephant keeper, in my uncle's joke, he was still "in showbiz" and yet, unlike some of his colleagues, he could still go out in the town and blend reasonably well.

And so I got to thinking about Ehlers-Danlos Syndrome and the circus: 

The two most obvious differences in people with Ehlers-Danlos Syndrome is hypermobility of the joints and stretchy skin.  Many acrobats,  and probably all contortionists more than likely have EDS or a similar condition of hypermobility.

It is recognized in the acrobatic schools of China,  where there are many hypermobile people (it's genetic and a dominant gene) and a strong tradition of acrobats, that the performing life of most acrobats is short -the joint pain and arthritis usually becomes unbearable by the time the acrobat is in their mid-to-late twenties.  

...unless they happen to be this guy, of course. Wang Jiangsheng is 83 years old. He reminds me a little of me great-uncle Seamus, except Seamus was 78 and used to put both his feet behind his head.  it was his party piece.  ...but I digress.

I thought the solution that Mr Nelson, and more recently Garry Turner, who is probably the most famous person with EDS who is "out" about his condition, well he should be, he is famous because of it (Michael Phelps is -in my opinion- the most famous person who has Ehlers-Danlos Syndrome and has chosen to keep that fact in the closet) is that -unlike the acrobats, they found a way to exploit their condition without excerbating it. Repeated stretching and contorting will more than likely lead to The Pain of EDS, which is very nasty and difficult to manage. Of course many of us don't stretch and contort and we get The Pain anyway. We're just unlucky.

Now, I don't know if Nels Nelson had The Pain that is usually associated with EDS. Garry Turner has come out publicly and said that he does have it and he takes very powerful drugs to manage it; as most EDS-ers must.

 Many people with EDS don't like Garry Turner. They think he paints a false picture of the condition, that people think we can all do stuff like this, which -of course, we can't. Garry officially holds the world record for stretchiest skin. His skin is ridiculous, even by EDS standards.  

There are many people out there who work as acrobats or contortionists and probably have EDS but they don't know they have it, don't care they have it or don't care to know if they have it or not. However they make a living by exploiting their EDS. Most don't (can't) do it the safe way, by just stretching their skin. Most exploit the other hallmark difference of EDS, hypermobility.

Now, I wold bet money that this person, or Snake Girl and indeed most performers of this ilk has EDS or similar. And if they know they have it, know the risks and dangers and are legal adults, I have no problem with them choosing to exploit it to make a living. I expect many, if they were informed and educated about EDS would still choose to stretch and perform, either because they like the attention (showbiz!),  or could not make a similar income any other way. Snake Girl supports her entire extended family back in South Africa. I hope they remember that if she ever becomes disabled by EDS.

The advantage of EDS is that you can turn the freakishness off. It can be an invisible disability, expecially when one is young and using no assistive devices. When this young lady puts both feet on the ground, she will look like any other person.

 

I wonder if it is a sign of ...something, but freak shows, side shows and other strange and unusual acts and oddities are making a comeback. Garry Turner aside,  most of the acts don't feature people with deformities who are there just to be gawped at. Most of these acts feature performances. Of course of of the performances involve people hammering nails into themselves and picking up heavy objects by attaching them to their nipple rings. ....sigh.

Nowadays the "freaks" choose to be freaks.  They spend money for it.

...while Lobster Boy's daughter, who comes from a long line of carnival performers, is unemployed and  misses the limelight.

Who are the real freaks?

The people who pay money to see these shows, that's who.  That was always the case. Johnny Eck, once famously said (after his retirement from showbiz) ""If I want to see freaks, I can just look out the window."

Me too.

Boys and Girls

Overheard in the yard today:

Grace: (screeches)        "EWWWWE!        That's gross!"

Joe: (does Beavis laugh) "e-hehe    "That's cool!"

I thought to myself that just about sums up the difference between boys and girls.

Limbrel Review Part II

I am still taking the "frug" Limbrel. It's been just over a week now, and I am happy to report that the worst of the stomach issues seem to have passed (OK that was a bad joke). I am still more heartburny and stomach-upsetty than normally, but  -happily for my family-  the toxic flatulence has relented for the most part. The remaining residuals I can blame on the dog, who is usually the most frequent offender in that regard. It helps that he habitually parks himself right beside me, anyway. Hey, if opportunity presents itself, who am I to turn it down?

I have noticed no improvement in my arthritis whatsoever.

But here's a funny thing:  I bent to pick something up off the floor the other day.  As I have Ehlers-Danlos Syndrome, I am um.. "limber". I pick stuff up and tie my shoes by bending at the waist and keeping my knees straight or locked (yes. there is a difference: "Locked" in my case is a ways past straight). I don't even think about it, it's just what I do and have done just about forever. I get funny looks when I tie my shoe in public.

Well, I bent to pick something up off the floor the other day and felt a funny sensation in the back of my right knee:  A an unfamiliar tightness, which took me by surprise. I thought little of it at first -thought maybe I had slept funny- but it has continued for some days, In fact, it has now spread to the left leg, too. 

Now, when I at the waist bend to put my palms flat on the floor... Well, I can still do it, but I feel that pull in the back of my legs that was not there before. Is this the Limbrel?  I don't know. I can't think what else has changed.

Another thing that has changed, which I am NOT happy about: I have suddenly gained some weight.  My weight usually fluctuates about 4 lbs from day-to-day or week-to week, depending (I assume) on whether my body is choosing to hold or flush water and sodium.  However it does so within a range, and if it stays in that range I don't worry too much about it. Usually  it stays in the 6-9 lb range when looking at the last number on the scale. Now those numbers have changed and the range is from 9-2, which means the middle number is also changing more often than not. I am so NOT happy about that. Again, -although it has been a holiday, and I did eat a little more than usual, I don't think it was enough to cause that much weight gain.  I think I have Limbrel to thank for at least three of those four pounds.

I am seriously tempted to throw in the towel on this Limbrel business, but it is too early yet, so I will persevere. 

I will keep you guys posted. 

Frug: A Limbrel Review, Part I

I mentioned that I have started taking Limbrel for the arthritis in my hands.  Limbrel is officially approved for the treatment of osteoarthritis, However, we are not sure if this is the type of arthritis I actually have (me being me: test results indicate little wrong, but clinical presentation and pain say otherwise). I think my poor rheumy is desperate at this point, because my hands are getting worse, and nothing that has helped has been tolerated by my body (which appears to be the story of my life).

Limbrel is a new product. Not many people are taking it yet. So I thought I would write a little review here and document my progress on OSM for those of you who might be interested.

But before I do that, I am  going to explore Limbrel itself, how it came about, and why is it classified and marketed the way it is.

Limbrel is an interesting product. It is not considered a drug. It may sound like a drug; -with a generic name (flavocoxid) and everything. It may look like a drug (see picture of druggy looking product and packaging).  It is only available by prescription here in the USA. However, It is actually is classified -not as a drug- but as a "medical food product".

What the fuck does that mean? I hear you ask?  Indeed, I said it to meself. So I tried to find out.

According to the FDA, as defined in in section 5(b) of the Orphan Drug act (Orphan drugs! This is getting better already! Are they drugs without parents or drugs for kids without parents?  I have no parents, so I probably qualify either way...  but I digress...) a medical food product is:

a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.

Huh?

So by these guidelines, shouldn't Ensure be a medical food? Or the ketogenic diet? -or a lowfat diet, for that matter?  Indeed,  all food -if you think about it, is to manage a specific medical condition called malnutrition.  Naturally, some works better than others in achieving this end (resulting in many morbidly nourished people in this country -but that's a whole 'nother post!).

Where is the line between "food" and "medical food"? Indeed, where is the line between "medical food" and "nutritional supplement"? Because although Limbrel  looks like a drug, the descriptions sound more like a nutritional supplement to me. See for yourself. This is an excerpt taken from the official site:

Limbrel contains flavocoxid, a proprietary blend of natural ingredients from phytochemical food source materials. Flavocoxid is comprised primarily of the flavonoids such as baicalin and catechin. These or similar ingredients can be found in common foods such as soy, peanuts, cauliflower, kale, apples, apricots, cocoa and green tea. The fact that these and similar ingredients have been widely researched and used in medicinal products in other countries also supports biacalin and catechin’s safety and effectiveness. Limbrel provides levels of these flavonoids needed to meet the distinctive nutritional requirements of people with osteoarthritis and cannot be obtained through simply changing the diet.

Hmmm.  So it is a food and not a drug because it is a naturally occurring product which is extracted from plants.  Ah! OK then.

But hang on a minute: Morphine is extracted from the dried milky exudate of the unripe seed capsule of the opium poppy (Papaver somniferum). (-I found that definition on a web site, BTW. OSM has pretty good English, but "exudate" is not a word I use daily. Nor is "somniferum" -but I kind of like it!).  So Morphine is a natural plant extract, too. Why then is Morphine, which is a natural plant extract, classified as a Schedule II narcotic drug, and Limbrel, which is also a natural plant extract, classified as a medical food?  Indeed, why is St. John's Wort, which is also a natural plant extract, and only available by prescription in Ireland, classified as a "nutritional supplement" (i.e even lower on the totem pole than "medical food" ) and available over-the-counter here n the US? 

It's all quite confusing, really.

OK. Let's get the simple explanation out of the way first: One keyword is "narcotic"  Morphine is narcotic, which according to Dictionary.net means:

A drug which, in medicinal doses, generally allays morbid susceptibility, relieves pain, and produces sleep; but which, in poisonous doses, produces stupor, coma, or convulsions, and, when given in sufficient quantity, causes death.

Death is not a good side effect. Nor is addiction, which is the other big thing with narcotics. I can understand why morphine would be regulated so closely. You can't really sell it in the vitamin aisle.

So taking this same logic: Is Limbrel a food, not a drug because it is not addictive and cannot be overdosed on? So if I happened to down me entire bottle of Limbrel in a single sitting, does this mean I wouldn't get seriously ill or die?  This is not a theory I intend to ever test, BTW; -especially given the side effects I have experienced on just the regular dose (more on this later), but I am thinking out loud here.

And what about St. John's wort (SJW)?  That is available on the supermarket shelf and you can overdose on that. An overdose can cause Seratonin Syndrome, which is dangerous.

Symptoms of serotonin syndrome include:

 

• Confusion
• Seeing or hearing things that are not really there (hallucinations)
• A fast heartbeat (tachycardia)
• Feeling faint
• Fever
• Sweating
• Muscle spasms
• Difficulty walking
• Diarrhea.
   

In one reported case, an overdose of St. John's wort caused seizures.

But SJW is not regulated as heavily as Limbrel is. SJW is not classified as a "medical food" but as a nutritional supplement, and is therefore available in me local supermarket, parading merrily on a shelf my kids can easily reach.

Hello, FDA?  Here is a new word for you: Consistency.

I am still curious why Limbrel walks like a drug and talks like a drug but is not a drug?  I did a little patent search: Limbrel has two so far; this one  and this one  and a couple pending.  I suspect the answer is the simplest one:

Money.

If you control the patent and the product, -especially with the backing of the FDA, you become the sole and defacto supplier for 50 years.  It's a really clever move.  If Limbrel was simply marketed as a nutritional supplement, it would lose a lot of cachet -AND it would mean open season for competitors.  Getting classified as it has been was pure genius. Not only for the patent and FDA protection, but because most consumers think "prescription" means "better".

Limbrel was developed by Primus Pharmaceuticals, a private company run by a bunch of late-middle-age-to-mature white guys. As it is private, I can't get hold of their financial reports, which is a shame. I was pretty curious about some of their activities. I am particularly interested to see how they managed to make a common substance found in everyday food into a prescription product.  I strongly suspect their real genius lies in management, marketing  and lobbying, not in science.   I could be wrong, of course. OSM is rather known for her cynicism.

I tried to find some evidence to back me suspicions, thinking I would unearth a huge amount of political contributions, but I only found a few campaign contributions by JD Weir, who is the Head Honcho  there (although I'm sure that's not what it says on his business cards) to support some local right-wing republicans. No big surprise there.  I'm sure the real money was hidden behind some ostensibly independent lobbying group.

I'll have to dig a little deeper.

You know the biggest irony is the amount of time this piece has taken me to write. There is a simple reason for this. My hands are KILLING me at the moment. I have had to take many breaks, and slather on the Voltaren gel. The irony of this is not lost on me. I aggravate the inflammation by writing about Limbrel, so I need Limbrel to combat the inflammation.

It's messed up.

As to how I am doing with Limbrel? Well,  It is early days yet -not even a week. As it is not a drug, I was told not to expect results immediately. I have mainly had side-effects so far: upset stomach and noxious flatulance that could clear the mall in record time. I was told this is my body being "cleansed of toxins" I don't know if I buy that or not, but I am giving it more time, but not much. If the toxins aren't out soon. Himself will leave me and the children and animals will go with him. 

BTW my new name for Limbrel the half-food/half-drug is this:

Frug.

It sounds filthy, doesn't it? Time will tell if it is.

More From the Floor

I knew I was in trouble when I got lost on the way there.  I had no excuse for getting lost. This rheumatologist has been my doctor for a couple of years. Not only that, but her office is in an area I know well; on the same street as The Chiari Institute, the radiologist, Filene's basement and my cardiologist.  I still managed to get lost and I was 15 minutes late. Things went downhill from there.

Backtrack a little: I thought I had discovered a breakfast I could eat. This breakfast worked all last week, when I was ferrying a friend's kid to and from school in the morning (long story). So I ate my new "magic  breakfast" yesterday on the way to the rheumy's office. Eating breakfast was my mistake. Actually, assuming this week would be the same as last was probably my real mistake.

I ate breakfast and got lost!  I guess confusion is the first symptom of my fits. I always thought it was visual disturbances, but the confusion definitely started first.  I suppose the other times that I was confused, I didn't know I was confused (being confused and all). I guess it is hard to know these things without another person present, however, to get lost en route to somewhere familiar is pretty definitive.

While I was in the waiting room, the usual "other" seizure aura stuff started in force. I knew I was going to seize and there was nothing I could do about it. I just hoped I would get to an examination room before it happened. I didn't want to freak out the other patients -they already look askance at my obvious lack of stiffness  (Once a man told me I had no right to be there because I could walk fluidly. I put my foot on top of my head and said "too flexible can be just as bad as not flexible enough". He shut up). My wish was granted. The attack held off until I got to a room. I had a pretty big fit on the floor of the examination room almost as soon as the rheumy walked in the door.  The poor woman was at a loss what to so. Seizures aren't her thing. I could hear the distress in her voice as she tried to calm me (and in-between convulsions, I am reassuring her. "It's OK. I'm used to this"). 

After I had stopped conulsing, most of the actual appointment was conducted with me sitting on the floor -just in case another one hit (two more did) and the doc sitting on a chair.  She was wearign cute shoes. 

I need to backtrack again for a bit here:  Dr Curious had suggested I get some testing done for dysautonomia. There is a specialty lab in NYC which does this testing, but you need a referral. I didn't even bother with my PCP. He is a nice man, but terrified of "my" stuff and I knew he would just tell me to speak to #25. So I spoke to #25. He suggested I try contact a different hospitap altogether.   I asked him if he would would write the referral? Sure he would!  I just had to tell him where I wanted to go and what to write.  (quoi?)

So then I went to me cardiologist. He suggested I see a nephrologist and suggested yet ANOTHER center. He also suggested the rheumatologist might know something.  It so happened that between cardiologist and rheumatologist visits, the kids had their visit with their rheumatologist a couple of weeks ago, I asked her if she had any suggestions or ideas. She didn't but she would ask someone. Call her in a week. I did and she has not returned my call. Big surprise.

So all this came flooding out while I sat on the floor of the rheumatologist's examination room. I told her I was at my wit's end and didn't know what to do.  She picked up the phone, called someone, and in about three minutes, she had the number for the dysautonomia lab, as well as a number for a new neurologist (don't know if I will see him or not) and a prescription for dysautonomia testing. -Boom.

I think I mentioned before that I love my rheumatologist.

She finally got to actually examine me and my hands, which are getting worse, BTW -about 40 minutes into the appointment.

I am trying a new product Limbrel which is a "medical food product" not a drug, but only available by prescription. There is a whole 'nother post therein, I suspect, but not today.  Today I have been too busy trying to pry my tilt-table records from the cardiologist's possessive receptionist.

EDS Turkey

I know it's not November, but I recently found this picture. Unfortunately, I didn't manage to scan it before a cat knocked a glass of water over it. I dried it out, and I think (hope) you will see enough detail to get my point.

This turkey has Ehlers-Danlos Syndrome (EDS).

It would be more correct to say that the hand from which which this turkey was made has EDS.

Grace figures she was in Kindergarten when she drew this handsome guy. I figure it was first grade; -although in fairness, I would trust her memory more than my own. So she was probably  5½ or at most 6½ when she drew him.

Note how long and slender her fingers are.  Many (not all) people with EDS have long fingers like these. Grace's hands have never looked like a child's hands. Even as a newborn, her hands looked like those of an adult -but in miniature. She had long, slender fingers and palm. She never had chubby, stumpy baby hands, not even when she was a chubby, round-cheeked baby.

This is not to say, of course, that all kids with long slender hands have EDS. But it might be one part of a puzzle if other signs are present.

A Different Kind of Autism Awareness Day Post

This is not a standard Autism Awareness Day post. In this post am I advocating a different kind of Autism awareness.

I want to address this piece directly to those of us who have neurological and developmental differences: Those with Autism (all forms), AD(H)D, Tourettes, OCD, ODD, NVLD, SPD/SID:

Have pity on the Neurotypicals (NTs). They are in decline.

Look at the rate at which our population is growing: In 2004, Autism impacted one person in 166. In 2007 it was 1 in 150.  If we follow this growth in a linear pattern, Autistics will outnumber the normies around 2036. That's just Autism, of course. If you factor in the other stuff, particularly ADD and ADHD, which is about 3% of the current population, the timeline is shorter.

It's scary, right?  In about thirty years,  we will be in charge.  We really should start planning now. First of all there is the name: By 2036, We will be the neurologically typical.  So we need a new name for them. I think we may want to consider "Neurological Throwback". This way the acronym stays the same, which will provide some continuity and should prove useful for all sorts of reasons.

We need to be kind to the NTs that remain, especially the children, who will probably suffer the same isolation and confusion that we remember from our own childhood. We should try and learn their ways, and do our best to help them fit in. We should try to understand their insistence on timliness and routine (if we have ADHD) and their constant changing of routines (if we are Autistic).  We must try and learn some of their social customs: like smalltalk -just to keep them comfortable. It is amazing how may NTs wish to discuss the current weather; -as it that were more than a two or three word conversation; as opposed to global weather patterns over the past 100 years, which is far more interesting.  We should bear this in mind.  And they also have this curious obsession with "eye contact", so although this is extraordinarily distracting for many of us, we should make an effort. After all, many of them fought very hard for us. OK it was mostly our parents, but still. We should return the favor. Pay it forward, as it were.

I guess they need a ribbon too. I like the AIDS ribbon. It is pretty.  If AIDS is cured by 2036, I think the NTs should have that one.  The other glaring option of course, is the "puzzle ribbon". We won't need a ribbon anymore, as we will be setting the policy. But... I don't know. Personally I wasn't a big fan of the puzzle ribbon. Well, let's see if it fits.  Here is the ADA's explanation of the symbolism.

The puzzle pattern reflects the mystery and complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope—hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives.

Personally, I think that's a bit insulting.  But technically, if you substitute "Autism Spectrum for "Neurological throwback", it almost fits:

The puzzle pattern reflects the mystery and complexity of the Neurological Throwback. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope—hope that through increased awareness of NTs, and through early intervention and appropriate treatments, people who are neurological throwbacks will lead fuller, more complete lives.

Well, maybe not...

Another option would be to just go for a ribbon that it the opposite of Autism. How about plain gray?  A plain gray ribbon to represent the inpeneratrable fog that is the NT mind/communication style  when seen from an Autistic point of view. Hmmm. It's a definite possibility.

Education of NTs will be important, The population shift will occur among the youngest kids first (obviously) so we need to start thinking about the schools NOW.  IDEA will need to be completely re-vamped (as will the ADA). We should devote more schools purely to what used to be called "Special Education" and ramp up or programs for ABA, speech therapy, occupational therapy etc therein. In fact, we probably need to redesign a lot of these schools from the ground up for lighting, seating, noise pollution and other sensory distractions. We could leave a few classrooms in the old style of desks, bright lights and bright colors for the remaining NT students and teachers. We may even devote a few special schools just for the teaching of NT students, as verbal-based learning will become more and more specialized in the future.

With that in mind, we should have existing NT teachers document NT learning styles and design appropriate curricula for future use, as the Autie/Aspie teachers of the future may have difficulty understanding and teaching these kids.   

We can start thinking now about assigning a World Neurothrowback Awareness day. I propose we just give them this one: April 2nd. After the population shift, we won't need it anymore. They can have it. 

So today: April second is Autism Awareness day. It is the day that all of us on the Autistic Spectrum (or related disorder)  should be aware of our future responsibilities, and to start preparing to accommodate the dwindling population of Neurothrowbacks. Our time is fast approaching.  I don't think the world is nearly ready.

Think about it.

An Unhappy History of X-rays

My son Joe showed up to his 7yo well-checkup with a fairly advanced urinary tract infection. Good thing they check that stuff, because he hadn't complained of any problems; and as he was pretty much independent in that area, I hadn't noticed any.

Long story short: After a few rounds of antibiotics, several months, a few sonograms, many follow-up visits and a lot of palaver, there was still blood in his urine. They then decided to do this test, which involved taking an x-ray of his bladder while full, and then he had to pee while they x-rayed the process in real time -to ensure all was working OK.  The techs were two gentlemen of mature years; -nice men, but given to lots of platitudes and false joviality (is that a word?  it is now). "We're just going to take a picture of your bladder, Joe. This won't hurt a bit".

Here was the problem: The bladder had to be full of s special x-rayable fluid. To get it in there... well, it wasn't ingested.  They used a local anesthetic, but Joe still said it hurt.  His concerns (and mine) were poo-pooed by the Overly Jovial Men. This was before I  knew we have Ehlers-Danlos Syndrome Type III. It is well documented that Lidocaine doesn't work too well on us. Poor Joe.

So they filled up his little bladder, took a few pictures, and then they wanted him to pee lying down. This insulted Joe's Autistic sensibilities hugely. He was a BOY! He didn't pee lying down like a baby! Thankfully the while contraption tilted, so they uprighted him while still on it, which freaked him out a bit (more). I can still see him standing on that table, naked, all 48lbs of him, shivering, goosebumply, and pale blue; trying to hold it together enough so that he could pee and get out of there. He did and I was proud of him.

The test was normal.

A few days later (I'm not kidding!), we went on vacation to the Jersey shore. On the very first night, Joe fell onto his head. I knew immediately by the scream that he was really hurt.  The ER poo-pooed our concerns (they were closing!)  and sent us home with he usual instructions: wake him every few hours and come back if he is unresponsive or starts vomiting -but only after they re-open at 10am (nice).

The next morning, there was obviously something quite wrong. He was completely white, refused to eat or drink and complained of a headache. On the way to the ER (10 minutes) he screamed at the slightest bump or pothole and threw up twice.

He needed a head CT. He had actually been doing really well with the whole hospital thing until an overly-cheery young female tech announced that she was "just going to "take a picture of his brain"

Shit.

I don't know quite what he thought this might entail, but this was less than a week after the bladder thing, and I can only imagine his thoughts.

Joe lost it.  He completely and utterly lost it.

He went into full "fight" mode, throwing Ninja punches and kicks (aimed to miss) that he had seen on the telly in her direction.   She ended up backed against a wall, helpless. She was NOT amused.

So Joe was sent to the ER proper, put in a gown and left with me to try and calm down a bit. They wanted to sedate him for the CT scan, but there was a question as to whether he would allow them to run an IV without a fight. Given his stress level, I didn't think it was likely, so I gave them permission to restrain him if needed.

Restraining USUALLY means swaddled in a blanket and sat on (not really) by several nurses. Imagine my horror when a tall and tattooed young gentleman, built like a brick outhouse, with the muscles on his muscles bulging out of his scrubs, walked down the ER and asked me, "where is the the kid who needs to be restrained?" I gulped and pointed to Joe. I mean, honest to God!  Talk about overkill! I think one of this guys arms would have outweighed Joe. He could have restrained him with one thumb! I explained to Captain Meaty -as I had to all the nurses- that Joe is Autistic and to take their cues from me. Thankfully, they listened.  In fact they were really, really good.

It turned out that Captain Meaty was actually a complete marshmallow. He bonded with Joe over Spiderman and Pokemon. The nurse explained to Joe -in detail- how they were going to run the IV and Joe allowed them to do it. He didn't need to be restrained.

In fact, Joe was responding so well to this guy -now renamed Mr Marshmallow, that we decided to try  the CT scan without sedation. Mr Marshmallow went into the room with him, stayed with him, and talked him though the whole thing. Joe stayed still, they got the pictures first time and we were all done. The CT scan was clear, thank goodness.

So now you know why Joe doesn't like x-rays.

In contrast, Grace had her first x-ray (chest) conducted with maximum niceness and minimum drama in a private after-hours pediatrician's office, which is still called "the skeleton doctor" In Grace parlance. She is always happy to go back there. 

"Which doctor are we going to see?"
"The skeleton doctor"
"Yay!"

First impressions last.