One Sick Mother

The Scams Just Don't Stop...

A new reader, Kathryn, who was angered by my post exposing the OHS scams, has done some Internet noodling for herself and uncovered a whole new series of stuff (thank you, Kathryn!).  I am working to get the whole list together. If you are interested in helping, please e-mail me, because there is a LOT of stuff here and I have been extra seizurey of late, therefore my concentration and attention span is particularly poor right now.

You know, when I was initially doing the research on scams, I was saying to myself there had better be nothing in here claiming to cure Autism or Ehlers-Danlos Syndrome. Because that, my friends, would have angered me beyond reason. I was quite angry enough at the whole "rat poison and hairballs as a cure for Parkinson's thing. I think had I found an 'AutieTab' or similar, I would probably have started shopping for explosives and booking a flight to Norway.

So I am glad that enough time has passed now since I finished part III,  for me to look this little beastie in the eye and only get mad enough to turn the air a nice dark shade of indigo...

Hey, guess what? Danlotab is a completely guaranteed and clinically proven herbal treatment for Ehlers Danlos Syndrome!  Now where did I hear THAT before?  Oh,  I dunno... Only about 70 other places!

The audacity of these people just floors me.  I mean, it floors me each time. I just don't get immune to this, ever.  And every time I think I have found them all, and reached the end of this story, another thread shows up. I pull on the new thread only to find it is attached to a whole set of other threads and the web just gets bigger and bigger...  I wonder how many people work fulltime to perpetrate these scams?  And I wonder what they would achieve if they used their powers for good? Because this operation, for all it's ignoble, low-lived dispicability, is actually quite clever and probably requires quite a lot of resourcefulness and ingenuity to run.

But instead, they choose to single out the sick and vulnerable, shamelessly lie to them and try to scam them out of their dwindling cash.

Bastards.

Anyhoo... back to Danlotab:

I immediately recognized the ingredient list, of course. It is our old friend formula #2, also marketed as Pileen in Pakistan, for the treatment of piles (hemorrhoids), and apparently re-branded by Oslo Health Solutions (for it is they, of course) as a treatment for -not only EDS, but also as a "guaranteed and clinically proven" treatment for Arachnoid cysts, Ascites, Multiple System Atrophy. Chordoma, Chronkite-Canada Syndrome, Teething (really!), Muscular Fasciculation, Horner's Syndrome, Lenox Gastault Syndrome, Megaloblastic Anemia, Myelodysplastic syndromes, Benign Essential Blepharospasm, Pseudotumor Cerebri, Enlarged Tonsils, Spasmodic Torticollis, Benign Essential Tremor, Kugelberg-Welander Disease (i.e. SMA type III), and Wiskott Aldrich Syndrome.

Its unbelievable, isn't it?

I do ask all my EDS friends NOT to buy this product and to spread the word that this is a scam.

...and keep watching this space. Because there is more to come on this topic.

A lot more, unfortunately.

Joe meets "Joe"

The pitfalls of blogging....

Those of you who know me well, know that my children's real names are not "Grace" and "Joe". I have aliased them herein for their privacy.  My kids know that I write, but they don't know the content or publication media, except for some stories that I have written for them which are published in-house by SickMother press (i.e. me inkjet printer!).

So the other night, at bedtime, Joe says "Mom, I have to ask you a question."  I know from experience that this phrase usually means Something Significant is coming, so I braced myself and told him to go ahead. 

"I saw that you were writing an article about a guy named "Joe" who has synesthesia, and I was wondering if I could meet him, because I wanted to ask him some questions"

..and my heart broke.

"Did you read the full article?"
"No. I just saw some over your shoulder."
"What question did you want to ask"
"well, you said that "Joe" can turn synesthesia on and off..."  I finished his sentence.
...and you want to know how to turn it off?" (because in fact, he can turn it ON at will (sometimes) but he can't disable it)

"Yes. I want to know how to turn it off"

I took a deep breath

"I'm sorry honey, but there is no way for you to meet "Joe". You see, you are "Joe".  I was writing about you. I just didn't use your real name"  His eyes went huge.

"I am "Joe"?!" ...you mean... you were protecting my identity?"
"Yes."
"so you don't know another kid with synesthesia?"
"Apart from that kid in California that has number-->color synesthesia... No."
"Oh"
"You know, part of the reason I wrote that piece was because I was hoping for find other people out there who might have the same type of synesthesia as you have."
"Have you found any ?"
"No. But I did find out about a young woman who has a different form than you have..." And I explained about Yanub's daughter, who has sound--> color synesthesia.  Joe thought this was pretty cool.

We talked for a bit about "Joe" and about himself and how -even if he did meet someone with the same type of synesthesia that he has, the mechanism may be different in each person, so he would probably need to learn about his own synesthesia in order to control it. But I told him I understood that it is always good to meet another person with the same thing, because then you don't feel so alone. I went on to explain that one of the reasons I had wanted to get him hooked up with the university was that maybe those guys might be able to help him understand his synesthesia better and be able to help him to control it. And maybe they might know other kids who have it. Because universities can be a magnet for this sort of stuff.

So Joe said that he wants to have another try with the university. He asked me to set up another appointment with the head of the Autism Department.

Remember at the beginning of my last post, I wrote that maybe writing about Joe's synesthesia might help Joe? Well, It appears that -in an unexpected way- it will!

Blogging can be strangely effective.

PostScript:

...last night, Joe pops out of bed in a state of excitement and stood in the doorway, flapping and bouncing from foot to foot, to tell me this:

"I was trying to see what she sees, but it is too hard!"
"what?...  See what who sees?"
"The woman who can see sounds.  I wanted to to try it."
"(eek!) Did it work?"
"No...  ...well      ...Mom! There are sooo many sounds!  I tried to do it and ...and ...it was just too much!"
"So you are going to stick to emotions, then?"
"Joe: "Yes.  I'm going to stick to emotions."

(Thank Christ for that!)

Joe Telling Me

I suppose I have already let the cat out of the bag that Joe has synesthesia, so I may as well tell the full story. Because it is a good story and well, maybe someone will be helped by it. And maybe that person will be me. Or better yet: Joe.  

Bedtime is the time when kids and parents talk in our house. That has been the tradition forever. Himself always tries to be home for bedtime and we alternate nights so that each kid 'gets' a different parent on alternating nights. We generally chat about our day and anything that is on our minds, and then we read for a bit before lights out.  This has worked very well for us, particularly with Joe, who has gotten into the habit of reviewing difficult moments or questions he may have encountered during that day, later at night when he is calm and in a safe place.

 

So one night, about six months ago, after much apparent internal conflict, Joe looked at me with a Very Serious Face. "Mom. I have something to tell you. But first, you have to promise you won't think that I'm crazy". A promise like tat is very difficult for me to make, because, being on the Aspie end of normal myself, I am very literal and I had no idea what he was going to say. I mean, who knows? I might think he was crazy! But then I figured that if he was truly crazy, I would have an inkling by now, so I duly promised.  

 

So Joe tells me: "I can see people's emotions with my mind eye"

 

I asked him what emotions look like and he told me they look like -are- colors. I thanked him for confiding in me and then I bombarded the poor guy with questions:

 

Me: "Are the colors the same for each person or do they change?"
Joe: "They change. There are different colors for negative and positive emotions."

 

Me: "What color is anger?"
Joe: "Anger is mostly red. Negative colors are red and purple"

Me: "What colors are positive?"
Joe: "Positive colors are yellow, green and blue"

Me: "How do you see the colors? Around the people, or on their faces?"
Joe: "I see the colors on their body. ...not actually *on* their body... ...it's hard to explain."

Me: "What about the animals? Do they have colors, too?"
Joe: "Animals don't really have colors. I know they have personalities, like Ringo is shy, but they don't have colors. Not the same as people, anyway."

Me: "Do people have colors when they are sleeping?"
Joe: "No. not when they are sleeping. I think it gets turned off when they are asleep."

Me: "What color am I now?"
Joe: "You are white because you're confused now.      ...You are confused, right?"

I laughed. He was spot-on, of course. I was very confused.  I think if he has said "I see dead people" I would have been LESS confused than I was at that time! I high-fived him for his perception.  He told me confusion is always white.

I tried to ask him if he could tell if someone was pretending? Like if he broke something and I was really angry but I was trying to pretend it was OK? He said something like "It doesn't work so well when I am upset."

Figures.

I told him I thought he might have some form of Synesthesia (I have heard of it because I have a friend whose daughter has a different form of it), but I wasn't sure. I told him it is a talent that not many people possess. Later I found a little information about emotion-color synesthesia online, and I printed the article out for him. He felt a lot better having a name for it and knowing he wasn't the only one. The poor kid thought he was losing his mind!

You know, this explains an awful lot about Joe; why he can be so very Autistic in his thinking sometimes, and yet so very perceptive at other times. -Oh and later I asked him if he can see his own color? He said he can't see his color by looking down on himself, but he can see it in the mirror (or a shiny surface, which he went on to list in great detail!). He said he often knows how he is feeling by checking his color in his reflection.

Wow!  Now that is interesting, is it not?

So yes, all this was about six or seven months ago. When I first found out about it, I was very excited for Joe. I thought that maybe for a kid who has the difficulties with communication that he has, who has a hard time understanding where others are coming from, the ability to see emotion might be a huge advantage. And an opportunity for me to learn more about him (by asking about the colors I might understand -literally how he sees the world).

 

I contacted the university which had diagnosed Joe and made arrangements for him to meet with the head of the Autism department there. Unfortunately, due to a series of crazy events,  including a blizzard and a house alarm activation, we could never get the appointment accomplished. And then Joe went very sour on the whole idea.

 

In the six months since I found out about Joe's synesthesia, I have learned some more about it as it manifests in Joe. For one thing, it is not always there. There seems to be times when it is more apparent than others. I am not sure of the pattern, but I suspect stress is a factor, although I am not sure if stress makes the synesthesia more or less apparent (Joe has this delayed-reaction thing going on, which makes it harder to spot patterns) .

 

Starting out, I had many questions in my own mind about how if worked:

 

First of: Although I don't doubt that Joe can see emotions, I wondered whose emotions was he really seeing? Was it really the other person's, or was he seeing his own emotions projected onto other people (or was he seeing his own idea of what others' emotions should be in a given situation)?  It gets confusing real fast...

 

If he was seeing other people's emotions, how was he actually reading them?  Was it facial expressions, body language or both, which then in his brain was portrayed as color? Or was there something deeper -almost mystical at play here?

 

Joe seems to be able to turn synesthesia on and off. I remember asking him to look at a random person in the dentist's waiting room and tell me her color. He looked confused and said

"She's pink"

"No. I mean her color, you know,  -in your mind's eye"

 

"Oh!"

 

And he looked at her again and a strange expression came over his face as he changed mode: "mostly white with a little bit of blue.  She is thinking of something happy, I think" (a few months later he told me that he thinks blue represents love).

 

Since I originally found out about Joe's synesthesia, some (not all) of my questions have been answered. Joe does seem to see other people's emotions (I have no idea how). However he is often wrong about the source of them. He has told me "I know you are angry with me, but you are trying not to show it"  And I have replied. "Actually, I am angry at Grace, because of _____.  You are half right. I was trying not to show it to you, because I'm not angry at you."

 

The above incident also answered the question I had initially about someone pretending not to be angry. Yes. He sees right through that!

 

I am not sure if this is going to be a lifelong thing with Joe. It seems to have emerged relatively late, and it is not consistant, which makes me wonder if it is maybe a transient thing, probably related to puberty? From what I have read, people can have synesthesia as children and then grow out of it around puberty. I have not heard of anyone developing it in puberty. But it is still pretty rare and not very well documented, so it is hard to know.

 

I guess with this, like with most things. Time will tell.

Interesting stuff, eh?

Telling Joe

I don't usually write quite so personally about my children. I try to keep some distance between them and the World  -even here. But I feel this is an important post. I told Joe about his diagnosis recently and I wanted to share that with you. I don't claim to be an expert or that my approach will work for everyone (anyone!). But I wanted to post this experience and my way of handling it, so maybe those that come after may learn from me; -whether I did well or not!

Every parent of a special needs child eventually asks themself: "Should I tell him (/her) of the diagnosis?" " ...How?"  and "What if...  and then ..."

This is something that had been going back and forth in my mind for some time. I had always planned to tell  Joe that he is on the Autistic Spectrum when he is "ready".  Of course, the trick to that strategy is defining and determining readiness, and then -for us- in picking the right time and the right things to say.  Joe tends to process things in phases. You can tell him something and he will take it in, not say much, and then over the next couple of days or weeks, he will ask questions about it. By the questions he asks, I know he has been thinking deeply about it. It can take Joe weeks or months to become comfortable with a concept.

So recently, I figured Joe was about ready to know the truth about himself.  I reckoned the summer break would be a good time to tell him; a time which would not interfere with school if he took the news badly, and telling him early in the summer  would give him a few months to get used to the idea before starting Middle School in the Fall (can you believe he is starting Middle school already?).

It is funny how opportunity presents itself. The wednesday before school broke for the summer, Himself announced that he would need to be away for the weekend on family business and he could take one child with him if they so chose. Grace so chose, Joe declined.   The kids finished school on Friday morning. After saying our goodbyes, we went home with report cards in hand. I read Joe's report card, which he had been stressing about for months. It was OK. Not great, but OK. He is on grade level for most everything except writing. I sat down with him and we went over it, me telling him I thought he had done a good job, but obviously he needed to work with on his writing, something with which myself  and the teachers would help him.

Joe got upset.  He went up to his room and shut the door.  I followed a few minutes later. He has a loft bed and when upset, he goes into the space underneath it to get away from the world. So I sat on the floor on the other side of the ladder and we talked through the ladder. During the conversation he said a lot of things about being different and he referred to himself as 'ghost':  "I'm a ghost. I'll always be a ghost and there is nothing you can do about it". He has done this once or twice before,  and I didn't (don't) know exactly what he means by it.  I figured it meant he knew he was different in some indefinable way.  I knew then, sitting on the floor that I needed to define it for him. I also realized that the weekend would be the perfect opportunity;  with the teasing, attention hogging  Grace out of the way, we could talk about it openly with time to process, without fear of embarrassment for him.

I told him. "We need to talk. I need to tell you some things about yourself, which I think will help you to understand better. We'll do it tomorrow after Grace and Daddy leave"  I saw his eyes get curious, but he just nodded.  And looked a little more hopeful.

 

I dug through a bunch of baby pictures that night.  Pictures I had put away, because they are painful for me to look at. Because you can see the change in the pictures. There is a definite difference in Joe Before Autism and After Autism.  I have hardly any picture of Joe at 2/3 years old because that's when the Autism was most evident.  I'm sorry now, of course, but I can't un-ring the bell there...  (Unfortunately, my scanner is on the fritz, so I can't post these pictures right now)

The next day, after brunch and cartoons and some of the usually Saturday routine, I sat Joe down with the pictures. 

I told him the whole story.

I told him that when he had been born, he looked like a tiny old man with huge feet. That he had been a happy, curious baby. And that when he was about 19 months, he changed and lost all his words and skills.   I told him that I had taken him to the doctor, and my concerns had been ignored. I told him that I had not given up, and had seen other specialists and sent him to school to help him, had consulted yet *more*  doctors and specialists, had tested his hearing and vision and had taken him to the university for evaluation where finally at 5½, they had told me he was on the Autistic Spectrum.

I told him what I had been told by one specialist when he was about three: to "prepare myself" because my son "may never talk and would probably never read or write or go to a regular school". I told him that most kids who lost skills like that (i.e. had a full scale Autistic regression at that age) never came back to join the world again and that he was unusual for how well he did.  I told him that I had always believed in him -have never believed that one doctor. I told him that I had fought for him and that I always would.

We went back to the report card and looked at it with new eyes. I explained that for him, a kid who had lost roughly three year's worth of skills, to be on grade level for most everything was a terrific achievement. I told him to look at it this way: "In six years of grade school, you have made almost nine years of progress. That's why I am proud of you"

And he glowed.

I knew he had more questions, the main one being the label. I told him what they had told me at the university "he is on the Autistic spectrum (and I explained a little bit what that is), but we are not sure where.  We are calling it Asperger's syndrome (because he is so high-functioning)" of course, he had a giggle that his mom had used "the 'A' word" and I told him "so you're an Aspie"

"I'm an Aspie?"

"Yes." 

He thought about it for a second, decided that was OK and then started with the questions:

"Is this why I get Speech Therapy?"

"Yes"

"Does this explain my stutter?"

"I think so, although there are plenty of kids who are not Aspie, who stutter too"

"What about my synesthesia?"

"Yes. It's connected.  Some Aspies and Auties have synesthesia, but not many. Synesthesia  is still pretty  rare."  (sorry I know this is the first time you guys are hearing about the synesthesia, I had kept it under wraps until now, out of respect for Joe's privacy. I may post the full story another time.   Or I may not)

We talked for a long time and then he floored me. Joe clearly has inherited his opportunistic  mother's sense of timing, because he saw that we were being open and talking about conditions and stuff and so he took the opportunity to ask a question of me:

"Mom, do you have a condition that causes you to pass out?" 

*gulp*

"Why do you ask that, sweetie?  Has there ever been a time you couldn't wake me  (I asked, terrified)?

"No. But I remember that time at the park... Remember?"

Of course I remembered. I had taken them to the park after dinner, had started to feel seizure-auray almost as soon as we got there, and had told the protesting kids to get in the car  after only a few minutes ("But we just got here!").  I had told them then that I "felt dizzy" and needed to go home and they complied. Even though it was several months ago,  Joe had remembered and had waited for the right opportunity to ask me about it (see what I mean when I say he processes stuff?)

I was honest with him.  "Yes. I have a condition that causes me to pass out and take funny turns. I have had it for almost three years. That is the reason why I was in the hospital so much a few years ago. But it is not dangerous and I am not going to die or anything"

Joe nodded.

"I thought so"

 

He thinks a lot, that boy. This is a good thing.

Time will tell what he thinks of all this.

Funny

I got a phone call today from the vet's office: 

"How are you?"

I was confused. Why were they calling?

"Did George have an appointment that I forgot about?"

"No.  We are calling to see how you are doing. You weren't in such great shape the last time we saw you and we wanted to make sure you are OK."

"Oh!" 

So I updated her and off she went, wishing me well,  not a word said about any of the pets.

Wow. 

Now in fairness, my PCP checks in on me every onceinawhile, but apart from that, I don't think any of my own doctor's offices have ever called to see how I was doing. 

But my cat's doctor's office did.

Surreal.

It is wrong that that should seem so strange, doncha think?

Momdar

It's a thing about having special needs kids -especially if you have kids who have/had behavioral issues or who are/were prone to taking off without warning: the old Mom radar -the "Momdar" becomes very acute indeed.  In other words, you become hypervigilant. At least I did! And most of the special needs moms I know have done so too.

The Momdar extends to other kids, too. I can't tell you how many times I have picked up other mothers' children in the playground, kids who fell, were about to fall or got into difficulties, and their mother's didn't happen to notice, because the Mom was chatting or reading. I could never afford to chat or read when my kids were at the playground. I had to be right there with them, because Joe could go from 'happy' to 'Defcon 8' in about 6 seconds. I am not resentful about this. It is just a fact of life.

These days, my kids are bigger and less impulsive/volatile. But I can't really turn the Momdar off. Once activated, that thing seems to stay in permanent overdrive. Just last night, I heard a parent call his kid in CVS and before the child could answer. I piped up. "He is over there, reading. He is fine."  The dad and Kid both gave me confused looks.  "uh... thanks" said Dad (oops!). I always twig the kids when I am out anywhere. If I see a child who may be unaccompanied, I watch him or her closely.  I have lost my own kid -despite my hypervigilence- too many times to be comfortable if a wandering and apparently unaccompanied child passes me in the mall.

Along with the Momdar hypervigilance comes the overprotective tendencies. The two go hand-in hand. Naturally, when you have protected, fought for and advocated for your child for years, the instinct to do so at all times is strong, even as they grow and develop skills for themselves.  I now have to make a very conscious effort to step back and allow my children to do and speak for themselves. I know this is a phase that most parents go through, but I think the process is more fraught and takes more thought and effort when one's children have special needs.

Today, my children started summer school. They attended last year for the first time, after Joe no longer needed special needs camp and I needed to do something with them.  Last year, I went in with them, found where they needed to go and stayed with them until the teacher came.

So earlier, there were were driving to school, all a little bleary-eyed because despite early bedtimes, nobody had gotten to sleep early.

Me: "Guys, we are running a little late, so I will drop you off out front, you can go inside, and then I will park and come back to make sure you are OK"  (I thought this was pretty radical for me. Normally I would park and walk in with them, no matter how late it would make them).

Joe: "Mom, you don't need to come in. You can drop us off at the door and we will find where we need to go."
Me: "Are you sure?"
Joe: "Yes, Mom.  We just go and look for the sign for our class and we wait for the teacher.
Me: "What if you can't find the sign?
Joe "Well, then we will ask a teacher"
 Me (clutching at straws): Grace, are you OK with that?"
Grace (shrugs): Sure, Mom. We'll look for the sign"

So I dropped them at the front door and watched them walk into the building. The driveway out of the school takes you past a parking lot. My hands moved, about to pull in to the lot and park, then I could walk back and surreptitiously check on them; -just to make sure they were all right. If they were, great!  I would sneak out and they would be none the wiser. If they were not, then I could swoop in and rescue them.

But I caught myself and corrected the wheel, steering back towards the exit. I made a conscious effort to stick to the original plan, pausing only very briefly to ensure my phone was on before driving out of the school, leaving them to manage the first day alone. 

It was difficult, but I did it.

I know every parent goes through this, but I can't help wonder if it is a more conscious and deliberate effort for us parents of special needs kids?  It certainly feels like it, that's for sure.  But maybe it feels the same for everyone? 

I wonder....?

Do I Want To Be Starting Somethin?

"Who's Michael Jackson?" 

Those were the first words out of Joe's mouth when I mentioned the Gloved One's passing to Himself over the dinner table. Grace echoed the question a second or two later: "Yeah. Who's Michael Jackson?"

Honestly, I was taken aback by this question.  Having grown up in the 70s and 80s, I was immersed in the Jacksons (most of them) growing up. Even though I wasn't particularly a fan, there was no escaping the Jackson 5 in the 70's, MJ in the 80s and early 90s (and Janet in the rest of the 90s!). Michael Jackson had been everywhere when I was growing up. It was kind of inconceivable to me that my kids hadn't heard of him.  In my generation it was immpossible not to hear of MJ. As a friend of mine once said in the late 80's: "These days, you can go to the deepest fookin jungle of Africa, and you will find a kid with a Coke can in his hand, singing a Michael Jackson song".

But thinking about it: Why would my kids have heard of him?  Joe was born in the late 90's,  a few years after MJ's initial and precipitous fall from grace.  We never played his music in the house, because -although we had both admired his talent, we weren't fans. I guess I thought my kids would have heard some songs on the radio and TV, and maybe they have heard some, but looking back, I figure not many or often.

So I managed to answer the question by saying something like "Michael Jackson was a singer and dancer. He was very famous."  They were unconcerned at his passing.

I left out the part where Michael Jackson also a child predator and molester. Because although the nuns told me not to speak ill of the dead, they also told me to speak the truth, and I honestly believe that -although acquitted-  Michael Jackson was guilty of the crimes for which he was accused (more on this later).

On Friday morning,  The Today show made mention that Thriller had jumped to the top of the iTunes download list in  a matter of hours, Al Roker appeared surprised by this fact, maybe wondering who was downloading this album; who might be a fan but not have it already? The answer is simple: parents of teens and kids, who also grew up immersed in Michael Jackson's ...everything and were shocked to hear their children ask the same question that Joe asked me on Thursday night i.e.   "Who's Michael  Jackson?".  I think some parents had the same knee-jerk reaction that I did:  how could you not know? and then; with memories of dancing nieces / nephews, friends and neighbors blooming in their minds:  But you're a kid! You have to see MJ!  You will love him! So they downloaded Thriller and Off the Wall because they want their kids to hear and see how Michael Jackson was back when he was great.

...and he WAS great! 

It is an understandable reaction, because the guy was a huge talent, and a lot of what he did both with the Jackson 5 and as a solo act is worth hearing/seeing. But then after the initial knee-jerk reaction, I got to thinking:

Should I?

I'm not being funny. There is a genuine moral dilemma here; and for me, it probably runs deeper than for most people.   You see, when I was 8 ...9, 10, 11, 12 ...13 or so, I was the target of a child molester (yes it went on for years, until I grew boobs and an ass).  He never actually succeeded in raping me (because seduction, not rape was his aim ...*shudder*); but the memory still haunts.  A lot. A few years ago, I read the transcripts of the declaration that the kid -the initial MJ accuser back n 1993 made, and it made my blood run cold, because I saw...   I recognized therein the type of manipulations and behavior patterns in which child predators engage, and I knew that the accusations against Michael Jackson  were true.  A kid can't make up something like that.  I'm sorry.  I know some people will blast me for this, but I a speaking what I truly feel in my heart here, based on an experience that few can (or want to) claim...

And now Michael Jackson is dead and my children don't know who he is. I could introduce them to his music posthumously, knowing that my son would be in no potential danger anymore.  I could allow his memory to stand -to continue in our family-  based solely on his music and talent.

 But should I?

Is it morally wrong of me to promote someone who I feel was a child predator to my children?

I know that Michael Jackson's memory needs no help from me to live in the world at large. But I am not talking about the big picture here. Not Macro Michael Jackson's Memory. Instead I am talking about how/if/should his memory remain in the microcosm of our home and family. I know that any  money/goodwill from Chez Sickmother to Chez Jackson is a mere molecule in the ocean. It won't make a dent in the huge debt and red tape mountains that the three young Jacksons will likely inherit.  And some may say that even so; -to deny my children the pleasure and knowledge of Jackson's music and to deny that potential revenue stream to the Jackson heirs is to -quite literally- visit the sins of the father upon the children.  His children are the heirs to his estate and his memory and they did no wrong.

I know  I am overthinking this, but the question is simple enough, Do I encourage my children to like someone that I believe was a pedophile, or do I allow MJ's memory to die in this family?  I know my kids may discover him by themselves in time. But hopefully by then, they will be old enough to make their own moral determinations.

And I thought further about MJ's children and I decided that -sorry; but they are not my responsibility. My children are my responsibility and with that in mind, the TV and radio have been tuned to anything except the MJ coverage in their hearing. Food Network; Cartoon network... Anything!

Michael Jackson is dead -and for this family -while I have control, I am going to let his memory die too.

Rest in peace.

Consider The Source -Revisited

I wrote a fun post entitled "Consider the Source" before. But this time I want to talk about a more serious topic, which is becoming more important in the blogging world.  I probably should have entitled this piece "Consider the Motive" and it would have worked, but I like to go with my first instinct for a title.

Every now and again, I am approached by someone who wants to talk about a "great new product" or a "great new service"  Usually, when I pull back the covers and investigate a little (because I investigate everything), it will turn out to be a false person endorsing Syrotab or some other scam.

Even if it is a legitimate product or service; e-mail or posts of this nature, -which are essentially solicitations- leave me feeling a bit skeevy. I always wonder at the people who will try to drum up free advertising for their product over the blogosphere.  Especially if they are mining the Autism or disability community to do it.

I got an e-mail yesterday today from someone; -we'll call her "Tiffany"-  who "thought this new Autism website would be of interest to you and your readers" and then included a very professional press release about it.

A press release.  Noooo thankyouverymuch.  OSM does not advertise. So I ignored the e-mail.

Tiffany does not like to be ignored, apparently.

This morning, I get a e-mail from her asking me if I was going to write a post about the "great new website". I told her OSM does not advertise. I thought that was the end of it. But nooo. Tiffany is tenacious  "We are not hoping for an advertisement. I just know that you blog about Autism, and this new service may be of interest to your readers". 

Um. OK. What is that, then if it is not an advertisement? Apart from the 'getting paid' part, of course? Oh wait... It's an endorsement (but still without the 'getting paid' piece). Silly me! It could also be called a mention, a plug or just plain old PR.  It is basically a way to get the fledgling (wannabe) brandname out there to a targeted audience.

Well, as Tiffany the Tenacious wasn't leaving me alone; I got curious. Usually when I say no, people go away. But she kept coming back. I decided to check out the "great new Autism Website", thinking that maybe they were an new, eager non-profit agency running on a tight budget and that Tiffany was perhaps a zealous volunteer or an intern. The site is slick and professional. No telltale 501(c)(3) notice anywhere. They are a for-profit organization. And they want your credit card information. The "great new service" that Tiffany was so gung-ho about is not provided for free, or even on a sliding scale for the needy. It will cost the average Joe (SickMother) $100 per month.  And yet here they are: contacting this Sick Mother in the hope that she will give them free advertising, or maybe spend $100 per month of her disability check on their (untested, unstudied, unproven) "great new service".

Niiiiice

And Tiffany is not a volunteer. She works for a New York City Public Relations agency.

Let me spell it out: This for-profit "Autism" agency is paying a New York PR agency to drum up free endorsements from Autism bloggers.  And that is not the end of it. The data of which bloggers take the bait, and how they 'perform' will be then saved, analyzed, measured and matrixed; and maybe the list of 'high-performing' blogs/bloggers will be re-used and/or sold to other for-profit firms, who wish to break into the Autism vertical.  Because let's face it guys: As I myself have pointed out, Autism is a growing market.

I know I am cynical, but this is how it works, people.

I don't know how many other bloggers have been contact by "Tiffany" and her ilk, but I am sending a warning out there to anyone who has been contacted about a "great new Autism website" to consider the source. And the motive. You may choose to give them a plug if you think the product looks good, (and I don't blame anyone who does), but I personally have a hard time with PR people being paid to trawl  the Internet, looking for bloggers to exploit.

For all bloggers: Here is a one-minute guide on how to spot a professional who may be looking to exploit you:

• Including a press release is a dead giveaway
• So is follow-up: "I was just wondering if..."  or my favorite: "I just wanted to touch base..."
• If the company/site that they are trying to sell is an US company, check their site to see if it says anywhere that is is a 501(c)(3) corporation, which signifies a not-for-profit.  Most NFP corporations state so clearly.
• Check the domain name on the e-mail address of the sender (the part after the @). Go to whateveritis.com and research *that* company. You will know pretty quickly if that company is a marketing or PR agency. If it is, ...well, proceed at your own discretion (but don't say I didn't warn you!).

So there you are, Tiffany.  You got me to write a post in the end. It may not be exactly what you wanted, but all advertising is good advertising, right? 

Or maybe; -as King Midas found out, you should be careful what you wish for.

Oh!  and put me on your "do not call" list.

K? Thx

Buh-bye.

Setting Goals: The Reading List

I have always been a very driven, goal oriented person.  It is one of the reasons I did well in the software business for so long, I was able to strive toward a goal;  work to a deadline and pull many (sometimes unwilling) colleagues along with me, by sheer force of will (and occasional threats of violence).

But it is very difficult to set goals when you are chronically ill. Surprisingly (to me), even the small goals proved a challenge. 

I tried. I took some classes. I had to drop out of the PhotoShop class halfway through because I was having seizures or auras.  I stopped the yoga class because they were doing a lot of moves that are ill advised for a person with Ehlers-Danlos Syndrome and/or Syringomyelia. I kept having to bail on my neighbour for our dog-walking runs because of seizures and fatigue or pain. I was fired from Physical Therapy because I kept having seizures there. And I grew tired of missing goals I set for myself around the house (like repaint the upstairs bathroom, which is tiny); unable to perform them due to pain, fatigue, seizures or dizziness.

There are a lot of things I would like to do and learn. Ambitious (and currently impossible) projects like an MBA aside; there are many classes I would like to attend, just for laughs: Knife skills, sewing, ballroom dancing,  (an ambitious one, that), yoga, pilates, pottery, jewelry making, beading, painting -... the list is endless! But right now, I can't do it. I cannot spend money I don't have on a class I may not be able to attend.  It is very limiting. And soul destroying.

Recently, my seizures and dizziness have been even worse, leaving me even more bored and isolated. I have been spending less time on the computer because the screen bothers my eyes. I was stuck for something to do, because I CANNOT sit and watch telly for hours on end.  I knit until my hands hurt. I listened to all my CD a gazillion times, got bored with all of them, but was too poor or stingy to seek new music.  So I finally renewed my relationship with the public library. 

Cool.

And I decided that now is the perfect time; -while I am pretty disabled, and until I can get some decent treatment, to do something I had been meaning to do for many years. Read some classic novels.  Oh yeah baby!  Here is an opportunity to set some goals AND to improve my tiny little mind.  My butt may suffer, but it was suffering anyway. Without good medical guidance, there is no helping the butt right now.

I  decided to set myself a list of 26 classic novels to read, one for each letter of the alphabet. When I am finished that list I will assign myself another one. I was unsure where to begin, so I shouted out to my Facebook friends for some recommendations which they readily gave (thank you!).  And then I gathered a few "100 best..." lists off the Internet, went through those and -somewhat randomly- came up with my final list. I thought to keep it to one per letter of the alphabet where possible, because that would place some books on there that I probably would not have chosen otherwise -just to mix things up a bit. And it stops me from reading only books that start with "G" or "H", or from reading six books by the same author at once; both habits towards which I gravitate.  

There are some obvious holes in this list because I may have read the book already a gazillion times, (Wuthering Heights) or because I just couldn't be arsed (Ulysses).  I couldn't find any J, K, X and Q books, so I substituted those with  a few other letters.  I am sharing this list just to keep myself honest (but I reserve the right to stop reading a book if I hate it)!

A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand

B

Blood Meridian by Cormac McCarthy

C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky

D
Dracula by Bram Stoker

E

Enders's Game  by Orson Scott Card

F

Frankenstein by Mary Shelly

G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck

H

A Handful of Dust Evelyn Waugh 
(Mrs whatsername with the hand-knit Fair Isle sweaters from high school will be happy that I finally crossed something off me High school reading list after all these years.  Although I didn't realize until today that Waugh wrote "Brideshead Revisited", which I had read  before high school, or I might have lost one less brownie point from her.)

The Heart of the Matter by Graham Greene

I

I , Claudius by  Robert Graves
(loved the TV series with Derek Jacoby!)

L

Loving by Henry Green

M

Madame Bovary by Gustave Flaubert

N

Nostromo by Joseph Conrad

O

One Flew over the Cuckoo's Nest by Ken Kesey

P

Play it As It Lays by Joan Didion

R

Ragtime by E.L. Doctorow

S

Shirley by  Charlotte Bronte

T

Tender is the Night by F. Scott Fitzgerald

U

Under the Volcano by Malcolm Lowry

V

V. by Thomas Pynchon

W

The Wide Sargasso Sea by Jean Rhys

Y

Yarrow by Charles de Lint

Z

Zuleika Dobson by Max Beerbohm

 

I have no idea how long this will take me, and I am setting myself no timeframes for completion of this task. The satisfaction should be in the journey, anyway. 

I hope.

An Updatey Kind of Post

I guess you guys are due an an update on me and my situation.  When I start getting phone calls along the lines of "How are you?  What's going on with the diagnosis?", I know I am overdue a personal update. After all many of my readers are my good friends, who rely on this blog for the latest in my medical woes (it saves me repeating myself!)

• I finally got my medical records from the cardiologist. It only took about 5 weeks.
   
• I have been trying to get into the Dysautonomia lab in NYC for extensive dysautonomia testing, which my rheumy fully supports. This place is harder to get into than the Freemasons!  They already rejected my prescription from the Rheumy, saying they need more information on my symptoms -but not from me (who do they think experiences the symptoms, Barack Obama?). So I am off to see #25, so I can give him a list of my symptoms and history, which he can then re-package and send to the lab.  It is completely ludicrous.
   
• We had the Middle school IEP meeting for Joe (Middle school! Bloody hell! I'm not ready!). It went well, but it was a bit disconcerting to see the amount of backup I got when I asked for an aide for him. No fewer than FIVE (5) of the people who work closely with him nodded emphatically  and said he would need a full-time aide in middle school. I am grateful for the support (and of course we got the aide). But now I am kind of terrified of middle school. And Joe will hit the roof when he learns he will have a 1-one-1!  Too bad. He will definitely need it -at least for the first year. 
  
  He is going to be in a co-teaching class: A mixture of GenEd and SpecEd kids and two teachers. One SpecEd and one Gen Ed. I think this will be a good setup for him.
   
• Grace turned 9 in May.  She is halfway to (official) adulthood now. Mother of God! I'm not ready for this!
   
• Guys may want to skip this one: I have been feeling especially shitty of late. Seizurey, headachy, numb-footy, unsteady, interspersed with short periods of feeling like my pre-seizure self. I think a lot has to do with the fact that my cycle is completely messed up. I have been trying to get in to see a new gynecologist, recommended by the rheumy, who I trust.  However this new doctor is somewhere between the Freemasons and the NYC dysautonomia clinic on the scale of 'difficulty to get into" I have considered going back to my old gyno, but I have rejected this notion on grounds that she is a bitch.
   
• (Yes. I am a bitch too. I have never denied this)
   
• I stopped taking Limbrel.  This was kind of an unconscious decision. I forgot to take it for a day. When I remembered that I had forgot, I realized that I was feeling marginally less bloaty, so I went right on forgetting! After a(nother) day or so, the severe right-side abdominal pain I had had for a month, which I had thought was an ovary, started to abate.  It has not recurred.   The rheumy says it was the right decision. Another med bites the dust!
   
• My hands are slightly better, but I think this is because the weather has been warmer.
• My good friend Wynda, who left this area about 10 years ago, returned for a visit and it was lovely to see her. She was amazed (naturally) at how big and interesting the kids have become. When last she saw them, there was only one, and he was just an eating and pooing machine back then (albeit a cute one!).
   
• I have not lost the 10 pounds I gained while on Limbrel.  I went back on Atkins for about a week, but ...Man!  -steak aside  (and I love steak, but it is expensive); it is so bloody BORING! I don't know how I did it for so long...

I'm sure there is more, but that should be enough to be getting along with.