One Sick Mother

Things I Thought I Knew. Part 1

Years and years ago, I remember watching a documentary about pets. I think it was about pets. The only part I remember was footage of this big, middle-aged man chasing a tiny white poodle around a nice apartment. He finally snared her and placed her, dejected, onto the counter while the voiceover said something like "John goes through this routine with Fifi every day. Fifi is diabetic. John must inject her with insulin twice a day or she will DIE! Fifi hates it.

And I said to my nineteen-year-old self: "That's ridiculous. Why doesn't he just have Fifi put down out of both of their miseries and get himself a healthy dog?"  And then I justified this further to myself by thinking of all the healthy dogs out there who needed homes and all the sick children who probably needed insulin. Insulin which poor Fifi was trying not to take from them by bolting at the sight of a syringe. But Bad John was selfish and cruel. Bad, bad John.

Sometimes, I think documentaries were just put on our tellys so that the Universe can come back and laugh at us 20-odd years later.

George, my cat is diabetic. His condition was managed well on special food for awhile, but he began to show some worrying signs. I took him to the vet last week, and sure enough, the special food isn't cutting it anymore. George needs insulin.

(Yes. He used to let Grace wheel him around the house in a doll's stroller. Then he got too big for it.)

John has been chasing Fifi rather constantly in my mind's eye since last week.  I have been hearing my nineteen-year-old self in my brain too. And I don't completely disagree with her. But she wasn't in my position then. Back then, it was all simple and theoretical. Now it... Well, now it ...isn't.

First off, I mispoke when I said George is my cat. Cats aren't really owned by anyone, except for purposes of fiscal responsibility.  Cats are more like little boats who can sail where they will, but they generally choose a certain person and moor themselves to them.

George moored himself to my son Joe. Joe, who -on a molecular level- does not subscribe to bonds of affection, went and moored himself right back. They are bonded. George waits for Joe to come home from school and hangs with him while he does his homework. George keeps Joe company playing videogames.  If I allowed it, George would sleep in Joe's room. Joe seeks George out when he is happy. Joe seeks George out when he is sad. However, Joe kicks George out of the room when he is angry, because he doesn't want George to accidently get hurt in the rampage.

So I thought I knew what I would do if presented with a diabetic pet. And maybe if circumstances were a bit different, I woudl do it. However, at nineteen; I had not factored an Aspie child into the equation (who does?). And so I came home the other day with a bottle of insulin, a box of syringes and an unhappy cat, who had been practiced on with saline. 

And now I inject George with insulin twice per day. Sorry, George (although he doesn't seem to mind). Sorry, poor children who need insulin. You can't have this one. Sorry, healthy cat in the shelter. We won't be needing you now.

And sorry to John and Fifi. I thought I knew what I would do in your position, but I thought it in a judgy way, hadn't thought it through and hadn't factored in ...many things.  

I know better now.

 

Another Cure for Picky Eaters

A conversation I had recently:

Joe: "om nyom yom yom"

Me: "So how was swim practice?"

Joe: "nom ...sGood! munch ...learned to jump off the chomp blue thing".

Me: (dodging bits of food that are flying, Cookie Monster Style, across the table) "So do you like that dinner? it's new?"

Joe: "chom... What?  (Looks at dinner for first time) ..um... I don't know...  munch"

Joe: "nom nom nom. s'OK.  Is there more?"

 

Swim team: Curing picky eaters since... I dunno when.

 

 

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

"Our Race"

It's a long complicated story, but Joe has been having an ongoing misunderstanding with two typical girls at school. These girls were assigned to 'buddy" one of Joe's friends, we'll call him Danny, a special needs kid who is lower-functioning than Joe. The problem is simple: Joe always took it upon himself to look after Danny, who he has known since the first grade. Now here they are in middle school and the status quo has changed. So it's a little bit of a turf war, a little bit of hurt confusion ("why didn't  Mrs P ask me to look out for Danny? I've been doing it for years) and a lot of pre-teen bickering.

Joe was talking about this to me recently and he came out with the statement "I think I'll just stick with people from my race from now on".  OK, that raised a huge red flag with me: Race? HELLO?   So I asked Joe 

"what do you mean, 'my race'?   

"Oh sorry Mom, I mean 'OUR race'"  (Nope.  The red flag didn't go anywhere with that!  In fact it climbed a little higher.) I tied again:

"You mean Irish people?"

No. I mean people like us. People who are different.

"Ooooohhhh" (phew)

...And we started to talk about differences and acceptance.  It's funny how Joe is almost a reverse snob. He will merrily accept kids with all sorts of difference and special needs, but he has -on more than one occasion- made some exclusionary comments about "normies" -which makes me laugh a little because the word I use too, and I'm pretty sure I never used it around him (maybe he is a reader?).

I am working on this with him, and I expect it will take some time for Mr Black and White to start to see any glimmer of grey.  But he will.

I hope he does.  After all, not ALL normies are awful!

De-Cluttering by Numbers

You know how sometimes, I think to add two elements of my life together in an unexpected way and I realize that maybe that was a good idea (and why didn't I do it years ago?) Well, recently I added my accountant and the show Hoarders together in my head, and it returned a result which pleased me.

Not that my accountant is a hoarder, you understand. He is a very nice man.

I'm not sure why I like "Hoarders" so much. Maybe it is because I am a terrible housekeeper and I feel better looking at the state of the hoarder's houses. (I can tell myself "at least I'm not that bad!"). Or maybe I view the show as a kind of warning to myself (and Himself) that there are definitely hoardy tendencies at work in this household, and if it isn't nipped in the bud, we may end up on that show ourselves in 20 years' time.

Or maybe I'm a sucker for a good makeover.

The other part of the equation came from the accountant. Himself often works from home, so the accountant was calculating what percentage of our house was taken up by this and what value that percentage has.

...and that got me thinking a rather obvious thought.

How much does it cost me to keep all the junk I keep?

Of course it's not all junk, but having been raised by parents who were born during the Depression and grew up in Europe during wartime rationing, I do have a tendency to hang on to more Stuff  than I should for three primary reasons 

1. In case I might need it someday. How may times have I gotten rid of something, only to find myself needing it three days later?
2. It's too good to just throw out/ It might be worth something.
3. It has sentimental value.

...which may be all well and good, but the accountant planted the seed that I am paying ...something for every square inch of my house. I wondered if I calculated the actual value of that space against some of the objects that occupy it, would this inspire me to throw more stuff out?

So I set me up a wee spreadsheet with some rough-but well-in-the-ballpark figures.  I factored mortgage, property taxes, utilities (except phone cable and Internet, because the Stuff doesn't use it, but it goes get heated, cooled and maybe watered) and maintenance. I calculated the square footage of the house.  Then I tweaked the square footage a bit.  I decided closets, dressers and other such areas were to be reckoned at half value, because they are there expressly for storage and we don't live in them.  I had originally decided they were free, but they are not. Junk kept in a closet will prevent non-junk from being stored there and tops of dressers are major clutter magnets for me. So half-price seemed a fair compromise.

When I had tweaked and jiggled, I came up with a number: $1.12 per square foot, $0.09 per square inch. Per month. So that bottle of expired eyedrops in the medicine cabinet is costing me roughly 4.5¢ per month to house, heat and cool; with absolutely no return value. Because it is EXPIRED.  And my taxes pay for some big burly men to come and haul shit away a few times per week. I really ought to be using that service more and I might have more house to actually live in.

Those eye drops opened my eyes in a way the manufacturer never anticipated.

Unfortunately, this revelation coincided with a bit of a symptom escalation, so I haven't been able to do much about it. Yet. I have set a bunch of books and videos aside for donation. however, I have been looking at objects in the house in a whole new light; eyeing them more suspiciously, wondering if they are worth the cost of their keep and the tiny percentage of my living space they occupy?

I figured the Elmo videos have definitely outlasted their value.  But my yarn: well, that's going nowhere.

Responsibility

I always thought that taking responsibility was a learned skill. I didn't think it was something people did automatically and without life lessons. Or at least not without a lot of nagging.  Mostly from their mom. I have had to remind my kids many many times that X, Y or Z didn't "make them do it" that "doing it" was their action alone and  that is why they were the one being punished.

However, sometimes Joe surprises me. Sometimes he will come right our and accept responsibility for something he has done. He 'confesses'. I sometimes wonder if he is being super-smart and he knows the best way to defuse the mom-bomb is to disarm her first by admitting to the mayhem before she discovers it for herself. But although I would love to think that, I honestly don't reckon his social skills are up to that level.

I think he just can't help himself.  That he just blurts it out. Maybe the guilt of keeping a secret is too much for him?  Or maybe he can't stand the suspense involved in waiting for his "crime" to be discovered?  I don't fully understand the mechanics of this process with Joe, but I do know that he often takes responsibility for stuff; and way more than he should. He has apologized when I slept in and made him late for school.  "I'm sorry Mom. I should have woken up."

"But I'm the one with the alarm clock!"

My notion of reresponsibility and what it entails has been challenged to the extreme in the past few weeks by a small electronic device:

Joe's cellphone.

It became apparent after a few weeks of middle school that if we wanted to prolong my life, we would need to get Joe a cellphone. The point was that he could contact me if he got lost (which had happened several times). I decided to go with a pay-as-you go unit, so he had minute counts and other stuff to monitor, to remind him to be responsible and not go nuts texting everyone in the directory. This is quite an affluent town, and a lot of kids have fancy hardware and unlimited plans. However, I wanted to teach him the value of a minute, if not a dollar.  You know, to be responsible.  And we are not affluent, anyway.

Joe liked the phone, but not the responsibility of owning it.  (I didn't realize just how much responsibility owning a cellphone entails.)  Although I had assured him that the phone is insured, and no real harm will be done if anything happens to it, he is ridiculously protective of it. He keeps it switched off to preserve minutes and battery life, despite my telling him several times that this defeats a lot of the purpose of having it, as I cannot call him if I am running late, because then we have conversations like this:

Joe: "Mom, where are you? I've been waiting..."

Me: "You only just turned your phone on now so you could call me, right?

Joe: "yes"

Me: "Well, I have been trying to call you for the past 10 minutes to tell you I am stuck in traffic and to catch a ride with Mrs S."

Joe: "But Mrs S. left already..."

Me: ...(who knows that Mrs S only just left and am therefore too busy biting the inside of my cheek to utter anything intelligible, much less printable)

Me: (takes a deep breath)

Me: "I'm on my way. DON'T turn your phone off after you hang up." (because if I forget to tell him that, he will turn it off)

Suffice to say, we have had a few Issues around the damn phone. It is about the responsibility of owning a phone. He hates having to remember to take it places, not lose it, turn it on, keep it charged, track his minutes, not get it lost/broken and generally take care of it.  It is a lot of stress for him.

This leads to me trying to pro-actively anticipate everything that might go wrong the the fecking thing and try to prepare him for it.

On the night we had the biggest 'phone' Issue (to date), it occurred to me that I had forgotten to show Joe how to put the battery back in. We have all dropped our phones and had the battery go flying across the room/ restaurant/ airport/ train station, right?  I figured (rightly) that if this happened to Joe he would freak out.

So I started to take out the battery.

Joe: "what are you doing, mom?"

Me: "I need to show you something"

Joe: "It looks like you are taking my phone apart"

Me: "well actually, I'm trying to"

Joe got very upset and walked into the adjoining room, out of my field of vision. I continued to remove the battery, struggling a little with bad fingers and a tight casing. When I finally got it open, I looked over my shoulder for Joe,  only to see him standing right behind me with a heavy musical toy held aloft in two hands, about to smash it down hard.

On my head.

It is really hard to explain the emotions you feel when you realize your beloved firstborn child was about to smash your head in over a mobile phone.  I was absolutely crushed.  I wanted to scream my head off and smash the fuckin phone against the wall.  But I didn't.  I got cold and stern and told him to Put. That. Down. Right. Now.  And he was in deep trouble.  Then I told him to finish his homework while I went into another room to cry and try and figure out what I had done that was so wrong.

I'm still not 100% sure. I know that in Joe's mind, the phone was considered the most important thing at that time. There were Rules about the phone, first of which was don't lose or destroy it. I had put the fear of God into him about keeping it safe. When he saw me taking it apart, he didn't know what else to do, but attack me to "save" it. (no it didn't occur to him to ASK me why I was doing what I was doing. He is after all, autistic).

You can fool most of the people most of the time.

You can even fool your mother part of the time

But underneath it all you are still Autistic.

I'm so lucky he hesitated. I was home alone with the kids at the time. He probably would have knocked me out (at least) if he had followed through with his plan.

Later, after we had both calmed down, and I had demonstrated how to replace the battery ("Ohhhh!"), I spoke with Joe about the incident, starting with the question that was foremost in my mind:

"Were you really going to smash that thing down on my head, or was it just a threat?"

"No. I was really going to smash in down"

(oh.)

(sometimes Aspie honesty isn't all it's cracked up to be)

I then tried to explain to him that mobile phones are ten a penny, but his mother only has one head, which is unique and irreplaceable, but he didn't get it. He kept saying stuff like "But you told me to protect the phone. I didn't know what else to do!"  Then I gently explained that he could have ASKED me what I was doing, instead of jumping to conclusions which could have led to pretty serious consequences.

"Oh." 

(my thoughts exactly)

We talked some more, but the upshot is this: Joe still doesn't fully get where he was wrong. He is hyper-responsible in some areas, but oblivious in others. He doesn't have the ability (yet) to prioritize life over possessions, or that it is sometimes appropriate to break Rules.  

I am hoping he will gain these skills in time, and without anyone getting seriously hurt.

ahhhh... Parenting is such fun!

Power

A few months ago, a transformer blew on our street, setting fire to a tree right outside our house.  Since then, our street has lost power four times. Just our street.  As we are the first house on the street, we can clearly see that the houses behind us and on the cross-street right next to us are all merrily lit.  This is frustrating.

The first two times the power failed wasn't a problem at all. It happened late at night, and power was restored by morning. The kids didn't even know it had happened. Himself and myself, having been raised in Western Europe in the 70s, and having experienced the great Northeastern Blackout of 2003, are reasonably well prepared for short duration power cuts and weren't phased at all. 

Then a couple of weeks ago, the family arrived home after an evening at the movies to discover the power had failed again. The adults immediately went to the locations where flashlights and candles are kept, but the kids were completely freaked out.  Particularly Joe. Aspies don't like change, and an unexpected change to his safe place definitely unnerved him.

Luckily there was a charged laptop available, as so we all sat down with a movie to approximate normality for awhile.  I didn't realize how upset Joe was by the whole deal until he asked to sleep in our bed. He NEVER asks to do that. Joe loves his bed and his personal space.  So the kids and I slept in the big bed that night, while poor Himself, dispossessed,  slept in Joe's room.  The power was restored a few hours later, and nothing more was said, although each kids quietly received an extra flashlight to keep by their beds.

On Friday evening after dark, the kids and I were alone in the house and the power went out again. I called out to them to stay put, got the flashlight and enlisted their help in lighting the candles.  Himself came home shortly thereafter and wisely suggested a trip to the movies. After the movies, Himself, who was having good ideas that day, suggested we drop into Target and pick up some camping lanterns.  We got a few small lanterns and one big one. We also got a couple of glowstick/flashlights thingys for the kids. 

The lanterns were an inspired idea. Turns out Joe was freaked out as much by the naked flames of the candles as he was about the dark house, causing a lot of conflict (you blow out the candle to neutralize the threat of fire, it gets darker).  So he relaxed after we got the lanterns on and the candles off. He even announced that he wanted to sleep in his own bed.

I realized when I saw him wandering around on his tippytoes (he is a toe walker) with a lantern in one hand, a flashlight in the other and a glowstick around his neck, that his staying alone was probably a bad idea, but I said nothing.  As Grace and I were getting ready for bed he changed his mind:  "I think I am too scared to sleep in my own bed. Does it make me a chicken if I want to sleep in here after all?"  I said it didn't make him a chicken. It made him normal. And honest. So we all snuggled into the big bed, where I told them stories from my childhood and confessed that I liked power outages because I never got an opportunity like this otherwise.

Later, as I heard Grace's breathing become slow and peaceful in one ear, and Joe's slow and serious in the other, I thought back to his change of heart about sleeping in his own bed: I think he thought he had somehow failed by admitting he was scared, whereas I know it had been a kind-of breakthrough for him.

How can I explain to an eleven-year-old that knowing your needs and limitations is not weakness, but is a different kind of power?

Smell

Grace has been having trouble falling asleep recently.  She becomes scared of monsters and unnamed threats when left alone in her room. No amount of reassurances will allay her fears. She needs a different comfort. I have been lying with her to help her fall asleep, but this means either I fall asleep too, and wake up cold with a sore neck/back, or I lie there bored out of my mind, thinking of all the other stuff I could be doing. 

Even though I spend most of my weekdays alone, I like my time after the kids go to bed. I use it to watch some shows I have recorded, to knit, and to view any "Not Suitable for Work" (NSFW) material that might have been sent to my inbox. I have learned the hard way that NSFW means "Not suitable for Children".  I get twitchy when I miss my evening time.

The other option is to put Grace in the big bed, where I can at least spread out and/or read while I am staying with her. But Himself and I never sleep as well when Little Miss Pointy Elbows is in the bed.  

So last night, Grace -who always used to snuggle down happily in her own bed, was crying and apologizing that she was scared. I reassured her and told her there was no need to be sorry. Her fear -no matter how irrational- is real, and I although I do ask her to make an honest effort to self-comfort, if she can't do it the first time, I will stay with her.  But last night I had a TON of stuff to do and Grace was in my bed, not wanting to be left alone. "Can't you bring your work up here?" she asked. "I can't wash the dishes up here".  She laughed at that thought.

Then I had an idea. I took off the shirt I had been wearing, turned it inside-out and handed it to Grace.

"What does this smell like?"

She gave it a cautious sniff, then inhaled deeply.  "It smells like you!"  She cottoned on immediately and snuggled down with the shirt.

"I feel like you are holding me"  (I was sitting on the edge of the bed, not touching her.)

"Do you want to try staying alone for five minutes, and I will come and check on you?"

She was already visibly relaxing into the bed. She nodded.

I checked on her five minutes later. She was fast asleep.

WIN!

When I went to bed a couple of hours later, she was still cuddling the shirt.

They say that the sense of smell has the most connections to the emotions and to past associations. I guess that is true.

Tomorrow night, I am going to try her with the the shirt in her bed.

Gardasil, The First Frankenvaccine

A friend, a young lady of college age,  recently posted a link to this video on her Facebook page.  It is the story of Gabrielle Swank, who has become very ill after receiving her third Gardasil vaccination.  Aside from the obvious impact such a story would have on anyone; two particular aspects of it struck me very hard:

1. Many Of Gabrielle's symptoms are very similar to mine; although hers are  more severe and sudden in onset.  I checked out some other stories and a similar list of symptoms emerges.  Hmmmm.
2. My daughter, Grace is nine years old. Very soon, I will face the Gardasil decision on her behalf. (Ugh)

 

So I decided to investigate Gardasil. Like you do. And to share my findings with you.  Because there is a lot here and it is interesting, while at the same time; kind of scary:

The first thing I found out is this: Gardasil is the very first of a new breed of vaccine, which is manufactured by a completely different process than traditional vaccines have been.  There are two new vaccines in a similar vein racing through the FDA as we speak: Cervarix, by GSK, another HPV vaccine and a direct competitor of Gardasil, and a new H1N1 "swine flu" vaccine by Novavax.

Hello, Big Red flag!

Traditional vaccines are made using a live virus, which you then put into the embryo of a developing hen's egg. You leave it for three days for the embryo to develop  some more, replicating furiously and making new virus as it goes. Then you crack the egg,  extract the virus, kill or disable it so it won't cause the actual disease, clean off the bits of dead chick, and voila!  One single vaccine dose!  So you can't make a vaccine without breaking some eggs. (idle thought: Do vegans get vaccinated?  Hmmmm.)

Here is a video explaining the process.

There are several problems with this method: It is slow, labor intensive, expensive and is very dependent on the supply of chickens/eggs.  Apparently they prefer to use young hens in their first laying season, then they "sacrifice" them before the next virus season, presumably rearing a batch of their offspring as a replacement. ('nother idle thought: You know, reading all this, I wondered how they would make an avian flu vaccine? What if the flock got infected with the bird flu virus? ...Or would that be a good thing, and save the trouble of introducing the virus to the eggs artificially?).

The Gardisil vaccine is made using a brand new process -long overdue-  using something called VLPs, which stands for virus-like particles.   I know, right:   WTF is a virus-like particle?  Well it is a fancy,  state-of-the art piece of genetic engineering.

Best as I can understand; it works like this (this is my over-simplified and somewhat over-dramatized version, but it is not entirely inaccurate):

You take a virus, remove it's brains, and then put it in a little bath of yeast and nutrients. The virus will reconstitute itself into something mute that looks and walks and like a virus, but isn't technically a virus anymore. Therefore the name "Virus-Like particle".  

 

I prefer to think of it as a Frankenvirus.  

 

With the brains removed, the Frankenvirus  cannot cause that specific illness,
but it can still reproduce  (similar to  many man I know, no brains, but ready to reproduce with anybody not fast enough to get away)!  And so it does just that, merrily making more Frankenviruses without the lab needing to use any hen's eggs at all (and I bet all the vegans reading this are heaving a HUGE sigh of relief and queuing up to get Fraknenvirus injections...).

Because VLPs -or Frankenviruses as I now prefer to call them (it is less cold) LOOK very similar on the outside, the human body reacts to them as it would to a regular virus, generating antibodies and therefore immunity to the original virus. Apparently the process can be further tweaked, adding bells and whistles in the form of protein coatings that may trigger different immune responses in the "host" -which is the drug company's preferred term for "person" in this scenario (it is more cold).

Frankenvaccines are believed to be safer than traditional live or killed vaccines because there is no way they can inadvertently cause the illness for which they were designed. This all sounds very well and good.

But what about causing NEW illnesses?  Did anyone think to check that one out?  -Before Gardasil went into mass production on our next generation of mothers, I mean?

Yes, there were clinical trials, but this is brand new technology. There have been NO long-term trials -intended to be run "post-marketing" (i.e. we'll inject it into all of your little girls and let's see what happens!).  I wonder how many parents were informed that the Gardisil vaccine that was being injected into their daughters was the very first product in a brand new generation of vaccine technology? Because that is information I would want to know, and I think I have a right to know it before I am guilted into making a snap decision in the pediatrician's office

 As a former software person, I know that  "version 1" of any product is usually loaded with bugs (pun intended). Every person in my business knows that you have to get to at least version 3 before they get most of the glitches out of the software. So generally, we install our new code on our colleague's computers befire our own (Really. it's mean, but we make an excuse and we do it).

The big th 
ing about new software code (and presumably new vaccines and Frankenviruses), is that they may work just fine in the lab, but you never know what kind of conditions they may encounter out in the real world. W hen you release them into the world, there can be all sorts of actions, reactions and interactions with other entities and other ...stuff that you could not possibly have predicted under lab conditions.

...not to mention the long-term effects, which have not been studied at all.  

 

 

 

Eventually, we iron out all the little glitches and we release a cleaned-up and safe product in version two or three.

 

 

 

 

Did the FDA, the doctors or ANYONE warn patients or parents that Gardasil is a 'version 1.0' -not just of a vaccine, but of a whole new technology and  processing methodology?  If anyone has been offered this vaccine, I would appreciate them letting me know if they were told this (thanks).

 

OK now to completely change the subject back to me for just a second.

I have been told I might have Chronic Fatigue Syndrome (CFS).  This was based on the fact that my system contains an abnormal number of antibodies against a virus. In my case, it is Epstein-Barr, but other cases of CFS have been linked to the HPV viruses.  I was very struck by the fact -as I mentioned earlier, that many of the people who got sick after the Gardasil shot had very similar symptoms to mine. Scarily similar.

And this got me thinking -funnily enough (in light of earlier descriptions)- of chickens and eggs:  Namely can CFS or a similar illness be caused by an immune response, rather than a viral infection?  In other words, could a Frankenvirus, which cannot cause illness in itself, cause a different kind of illness by triggering an unexpected immune response in some individuals?

Good question, no?  I wonder if anyone with any actual say in these matters has asked it?

..and I also wonder if IVIG or similar might help some of those girls and women who have had their lives destroyed by Gardasil?

Another big question surrounding Gardasil and other FrankenVaccines, -quite apart from the Frankenviruses therein, are the other additives, called  adjuvants, which are  chemicals added to the vaccine, supposedly to make the virus more effective.  The main one used in Gardasil is approximately 225 mcg of aluminum (as Amorphous Aluminum Hydroxyphosphate Sulfate adjuvant).  There have been many questions raised in the medical community, asking if this additive is really necessary?  The Frankenvirus has been shown to work perfectly fine without it.

Gardasil is not the only HPV Frankenvaccine out there. Cervarix, which is GlaxoSmithKline's (GSK) version, has been approved for use in the UK and parts of Europe. Cervarix only contains two Frankenviruses, (as opposed to Gardasil's four) but  GSK have been bragging hugely about their adjuvant,  known as AS04, saying it provoked an even better (i.e. stronger) immune response than Merck's boring old aluminum salt.

'scuse me, but is that a good thing?  Just how much immune response can a body take before it goes into overdrive or starts to shut down?

The one death which had  initially  been linked to  Cevarix, now turns out not to have been linked at all. The 14yo English girl who died had undiagnosed cancer, which had become quite widespread. OK fair enough, but I still think the shot thing was probably a bit more than a coincidence. What else had changed with her?

I don't want to create mass panic here.  I know millions of girls and women have received the Gardasil shot and been fine.

So far. 

But is their long-term health being monitored?  How many have gone on to have babies?  How ha  v  e those babies been?  Really. Enquiring minds want to know: 

What are the long-term effects of Frankenvaccines?

There have been thousands of serious adverse events reported and several deaths have been attrib  uted to Gardasil. I don't think the FDA is looking at this as anything more than just another vaccine. I don't think the FDA has said to itself (as I would if I were in charge) "This is the very first in a brand new generation of vaccine technology and processes. We think we'll follow it up more closely than if it were a traditional vaccine".  No.  The FDA, the CDC, the AMA and everyone looking at the cost of cervical cancer treatment and are pushing hard for us to have our little girls injected with this stuff -which -let's face it- is to prevent against a sexually transmitted disease (it is NOT a cervical cancer vaccine. It is a HPV vaccine. Yes, HPV can and does cause cervical cancers, but HPV is transmitted sexually. How many NINE YEAR OLD GIRLS -other than the abused- are sexually active?).

Several things need to change : The FDA needs to instigate some kind of process to more actively monitor and follow up on brand new technology such as genetically engineered viruses and proprietary adjuvants. Currently, they only audit every two years. I would be more comfortable with every six months in cases like these.   Sorry if that's a lot of extra work on an already-stretched agency, but the public needs to be protected.

But instead, the FDA is pushing through more and more Frankenvaccines. Cevarix is set to be approved any day now and a new H1N1 Frankenvaccine, developed by Novavax in Maryland, is being watched with interest. They were the first to put a swine flu Frankenvirus together after the CDC released the sequence, taking less than a month to do it. This is impressive and could change the whole face of the industry.

But at what potential human cost?

Frankenvaccines  have only been in production for three years. They have NOT BEEN FULLY TESTED. The pharmacutical industry is forging ahead nonetheless. I did a little search on VLP patents which are in development or approved:

Over 3,800 of them, including at least one for HIV.

None of this is bad in itself. it would be great to have a safe and effective vaccine against HIV.   However,  I am reminded of the whole Thimerosal thing in the 90s, where vaccines were tested and approved individually, with no thought given to the overall load of virus and chemicals injected into tiny babies. This meant that many babies were injected with mercury at many times the adult recommended levels, because most of the vaccines contained it and no-one had done the math on the cumulative levels (It sounds unbelievable, but it is true. This is the kind of shit the FDA routinely overlooks).

Who is studying potential Frankenvaccine cumulative load and interactions with other Frankenvaccines, I wonder...?

I remember the 90s and it seems to me the whole Frankenvaccine issue - as it is currently playing out, has a much greater potential for interactions and adverse long-term effects than anyone in the pharmaceutical companies or the agencies that are supposed to regulate them are letting on.

So I won't be giving my kids a Frankenvaccine anytime soon.  -especially in light of my own health problems. I already have some of the reported side-effects of Gardasil already, possibly due to my immune response to a different (non franken-) virus. 

What if whatever I have is genetic?

Therefore, Grace will be "one less" person getting Gardasil.

 

Only An Aspie... ;)

Joe returned home late yesterday, having stayed on at school for the Games club (he did warn me in advance that he was planning to do this).

Me: "So Joe, how was the games club?"

Joe: "I didn't go to the games club. It was too crowded. I went to Mathletes instead"

Me: (who would rather stick a fork in her eye than volunteer for Math): "So how was Mathletes?"

Joe: "It was fine."

Me: "Are you going to do it again next week?"

Joe: "Sure!"

His Grandad would be so proud...