Ballad of the Broken Toe

I had to take Rocky to the vet as he broke a toe.  The vet said that he did a good job at breaking his toe because it was broken pointing up [instead of down].  If it had been down, it would have bothered him to get around as he would have stepped on it every time he moved [and it was a toe on a rear foot].  Normally they 'buddy tape' the broken toe but Rocky did not need this either.  He did manage to tear one of the two ligaments and the vet thinks the broken joint [the first joint where the nail grows from] may fall off.  If it does, it will not affect him [other than he will have one less nail to clip].  This is the joint that is removed when a cat is de-clawed.

Created by a friend a friend at Spectrumville as a dedication to Rocky because of his broken toe.  Song credits to Dré Labre and his original video.  Absolutely hilarious to watch these rabbits sing!! Enjoy!

Corrections/Updates

All changes/updates made will remain here on the Corrections post for at least a week.  After that time, the original blog entry will be updated to incorporate the changes or edited and linked to a second post depending on the nature of the correction/update.

First, I want to add a link to my post on Paul Corby.

I feel that this article does a good job of expanding on the rejection and corroborates the interpretation of the rejection and motives which were made by the other articles and myself.

Secondly, I have corrections to make to my first research post.  Next to this photo, I wrote the following:
"I would like to take this opportunity to field a few disagreements I had with a presenter regarding this exact thing...

She put a chart on the wall which showed diagnoses of ASD's.  It was reflecting individuals up to the age of 21 who were diagnosed and how the incidence of ASD's was increasing.

The information was labelled by year, the year that the person was diagnosed.  I pointed out at least 2 problems with her data-set, just upon a cursory glance:
1a) As the data wasn't standardized by the child's age (ie. anyone who was diagnosed, they were counted in the year they were X years of age... if X=9, then a person diagnosed in 2001 at age 8 would be counted in 2002 and a person diagnosed in 2001 at 20 would be counted in 1990) so the numbers could be skewed/altered by diagnostic experience - especially as "Asperger's Syndrome" didn't make it into the DSM until DSM-IV in 1994 (the text-revision was published in 2000) ... you'll notice that automatically means the Aspie I identified in my example would have been 13 and unlikely to have been diagnosed."

While it is true that I attended a presentation where a information was presented which did not correlate the data by age, I need to note that the CDC information is based solely on populations of children who were eight years of age as of each year of study.  Therefore, the data presented in this graph is not skewed by ages of diagnoses.

I would also like to add the following:
The 2012 ADDM Community Report was based on the data obtained during the 2008 study.  In the opening they noted that the "estimated prevalence of ASDs increased 23% during 2006 to 2008 and 78% during 2002 to 2008... We know that some of the increase is probably due to the way children are identified and served in local communities..."  One of their key findings was that "The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70), although there were increases in the identified prevalence of ASDs at all levels of intellectual ability."

Although the DSM-IV-TR lists ASD's under Pervasive Developmental Disorders, only three of those diagnoses [Autistic Disorder, Aspgerger's, and PDD-NOS] are considered ASD's while the other two [Rett's Syndrom and Childhood Disintegration Disorder] are considered Pervasive Developmental Disorders.  [Citations for this include the above-refernced Community Report which lists the three ASD's and MMWR Vol.55 (17) pg 481 which specifies how all five PDD's are classified.]

I have been looking closer at the originating data [the MMWR articles as opposed to the extrapolated ADDM presentations] and other CDC publications/resources in order to prepare additional information to go along with the above.  Right now I will note that the DSM-V Proposal separates ASD from comorbin conditions which will give clearer information.  Unfortunately it probably will not be until 2016 when we get the ADDM data from 2012 and then another two-to-three years after that before we start seeing the data under the newer classification.

That is all I have for you right now.  I am currently working on two "science-y" posts [one dealing with prevalence and other useful trends/information and one dealing with filicide which will be very cheery], an Americans with Disabilities Act post, and a an assortment of personal-experience posts.  The next post will likely be a personal post, then the ADA post, then likely the ASD prevalence/info post.  Anyway, that is the two-week "forecast" for Just Plucky! and I hope you stay tuned.

Paul Corby. Denied heart transplant.

This blog entry is a result of my reading about the decision made by Penn Medicine regarding Paul Corby. By the way, go sign the petition should you read the information from those links, other news sources, and/or the contents of this blog. [Which was written thanks to a blog by a friend which was the catalyst I needed to write this coherently.  You can find more about that post below the jump.]

When it came to the heart transplant of [specifically] Paul Corby he did deserve equal consideration.
Other than the heart defect, there was nothing apparent [or expressed] about his physical health that would make him ineligible. Yes, he is an adult with different issues [autism and both possibly-related/co-morbid mood disorder and possibly-related unknown medical reactions; exhibited inability to manage his own medications; and possible reactions between current and necessary medications [ie: imbalance between medications, not necessarily life-threatening].

What I see as the main arguments that are important to consider in regards to otherwise healthy individuals in similar situations:

1. Autism should not be viewed as a life-threatening "disease" that affects whether one can be on a transplant list.
2. Even though Paul is an adult and it would be unlikely that Paul could manage his medication, Paul is currently under care and would likely remain under care. Unless we are going to deny transplants to children [who also cannot manage their own medications] then we need to make sure that the inability to manage medications for someone under care due to circumstances that render the individual more like a child [not as in someone who otherwise would have the capacity but fails due to already-established criteria which I cannot recall currently] but otherwise contributes/engages in society. [Do not construe this as though I am saying anything to the effect that I wish to exclude mentally handicapped - I just have spent too long wording this part and wanted to emphasize that Paul has exhibited involvement in society as a whole and I need to end this before it becomes a blog entry on a blog entry.]
3. Yes: Paul is on other medications and there is concern as to how his person and his existing medication will react/be affected by adding the necessary medications [of which, the only one that was noted as a concern was the steroid] but the person managing his medications had reached out and was willing to be actively involved in managing/adjusting the other medications to find a balance that worked.

I think every citizen pending a decision to be placed on a transplant list deserves the equal privilege of consideration which I do not feel was given to Paul Corby.

I feel that the information provided demonstrates that [in the specific case of Paul Corby] the deciding physician did not consider that:

1. the autism and co-morbid conditions were not fatal, degenerative, nor significant/uncommon
2. Paul received care assistance in certain areas, similar to a minor child, and would have been able to maintain necessary medications
3. a different health-care provider, with experience in the specific area of Paul's medication therapy and needs, was going to step-up and be actively involved in managing any medication adjustments which would be necessary.

Miscommunication - Mind Blindness...

I was trying to come up with a way to respond to Tanner's Dad Tim and while I was processing/mulling that, JD was taking me to dinner. As serendipitous as this sounds, these experiences coincided in a beautiful example and a horrible misunderstanding.  It was one of those weird moments that you see in television and moves where the person identifies the issue or how to fix a problem due to an epiphany received through a later [and completely unrelated] conversation/problem/random statement.  I just hope I was able to type both situations and the connection cohesively [which would make this an even rarer occurrence, lol].

The epiphany came as JD turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."  In that exact moment I realized that just as ASD's are described as having "theory of the mind" issues; NT's also have no idea HOW we are thinking.

From the beginning:
JD came and picked me up and we had planned to go to the Chinese Buffet.  There are two for us to choose from, but we usually end up going to the closer one.  This time we opted to go to the one that was a little farther away as the cost is similar, but the quality difference is noticeable.  Also, we had not gone to that one in awhile.  We get out there, but it has closed.  [Also - win, it is now a Japanese steakhouse/sushi bar except that JD does not eat sushi.]  So the decision was to either go back to the first option or head out to the other Chinese restaurant a little farther down which is more-expensive.  We ended up in lane on the road which could go straight or right.  Let us pause here for a moment, because I want to express how this works.  Snap your fingers.  How long did that take?  This next paragraph happened in that same amount of time.  Just keep that in perspective as you read it.

1- our lane goes straight and right. 2- right is Chinese, more expensive, and straight is Applebee's. 3- JD likes Applebee's, often wants to go there, I do not enjoy Applebee's.  4- we would spend the same amount of money at either restaurant. 5- if I suggest we could go to Applebee's, I have done something that takes JD's preferences into account and he may enjoy Applebee's.

Catch all that?  Now snap your fingers again just to help it feel real.  I do that, that right there, when I problem solve, think about a situation, consider what I am going to do later, etc., etc., etc.. It is awesome and it is exhausting.  [But I would never give it up. NEVER. It is totally worth it.]

Anyway, back to the narrative:
So I say, 'we could also go to Applebee's if you prefer.  We would be spending the same amount.' And that is where it all went horribly awry.  We go straight, he obviously does not wan to go to Applebee's and starts getting frustrated, he turns around, we head back out, I try to explain myself as he is visibly frustrated/angry/something, he turns around again, goes back to Applebee's and parks.  I said, "I just wanted to offer Applebee's because you like Applebee's, I did not want to start a fight or make this complicated."

That is when he turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."

We ended up talking/arguing at the table and from his perspective, we were at Applebee's solely because I wanted Applebee's [even though he should know that I do not like Applebee's - we had that debate several times because he would want Applebee's add I would always rather have O'Charlie's].  When I tried to state how I was looking at the situation, he would counter to the effect of 'oh, so it is my fault.'  No matter what I said, JD could not understand HOW I was thinking.  In my mind, it did not have to be anybody's fault, there was no need to lay fault anywhere. I just wanted to have him understand how/why I was thinking about the situation as this is a fundamental issue in our communication - he cannot understand my way of perceiving the situation.

There is no emotional component [not wanting to be wrong, wanting to make a situation somebody's fault, etc.] when it comes to situations like this.  It is nothing more than the fact that the words coming out of his mouth are not accurate to what I'm actually thinking/trying to say.  It does not matter how bluntly I state it, he is reading between lines that do not exist and refuses to understand that.

Similarly, I feel that this is where Tim and I ended up in our conversation: He is unable to understand the context in which I think. I've been working on this entry since Friday and initially I was trying to come up with a respectful rebuttal to Tim as I do not like confrontation but also I felt that he was just honestly not able to see my perspective.

I believe that Tim's personal emotions regarding his son get in the way of his messaging on Twitter. As an advocate [and co-founder of AutismAid] his tweets are even more important in terms of autism awareness. He has placed himself under scrutiny and others would take their cues regarding how to regard people with autism.

Aside from hurtful comments made [and the reply that it 'made me think']; I have seen where he has placed the "understanding" on a parent who murdered their autistic child instead of placing that understanding onto the people with autism. Tim also made it his place to declare that I 'gave up' because I was not sitting on top of Twitter, waiting for others to notice our exchanges and ask about them. I also feel that when I made it clear I wanted to have a discussion outside of Twitter regarding treatment options, he provided a format [Twitter DM even though I provided my email] and then ignored the sent DM. Before I offer up my complete rebuttal, I invite Tim to a conversation regarding his experiences, thoughts, etc. as it seems only fair.

So Tim, I ask again for a conversation outside of Twitter. I would like to discuss your thoughts/ideas and find out about your experiences while also sharing mine.

This is a rant, this is only a rant...

So, yea. I was working on stuff today and found a new blog I like and then read this post. [I want to qualify that this post reflects positively on how I feel toward the blog but horrifies me in regard to other people. The blogger did not really understand this one either.]

I did not verify this quote for 2 reasons, 1) I did not put any more effort than just typing "war on autism" into Google and solely looking at the first return and 2) I really do not want to end up on the website of the group that wrote this quote.

“Our children are soldiers in way as they too have sacrificed their lives for the “greater good”. Our kids have been sidelined by this misguided, illusionary war on disease. We must never let our country forget that our children too have paid an enormous price for our country.

“1 in 88 children now effected with autism and 1 in 54 boys in the US. The collateral damage done to American children during this generation will mean a shortage of soldiers, teachers, firefighters, policemen and women, doctors, nurses, engineers,and scientists. Just like the men who gave their lives for the greater good so have our children. OUR soldiers. OUR children. OUR future. Our Freedom. People need to start thinking in about how this crisis will impact our countries 10-15 years from now. The good of our nation is being threatened one child at a time. One day the effect will be felt.”

In case you may have gotten confused by the second paragraph [which states "Our kids have been sidelined by this misguided, illusionary war on disease."] and thought that this was stating that the war on the 'disease' is harming the ASD children [like I did at first] allow me to dissect paragraph two. [Also, if there is a saying regarding the difference between desert and dessert is that dessert has two S's because we would like to have second dessert, why did they not take the second S out of dissect?]

[but I digress - also two S's because I will have to do it again?] Paragraph Two:
'Many children, mostly boys, in the US have autism. This has caused "collateral damage" to American children and means that this generation will have a shortage of people [without autism and able to do worthy work?] to do essential jobs that only NT's can accomplish' ... Like being engineers and scientists?

I swear, does whoever wrote that have any understanding wtft autism [including the broader spectrum] causes as 'side effects' ??? Like, maybe, interests in math and science, ability to see pictures in our heads and evaluate structures, focus and perfectionism, logical problem-solving, and quick mental processing????

But, ya know, there will be a severe lack of social services, medical services, and advances in science and engineering because all these freaking kids went and got themselves all diagnosed with an Autism Spectrum Disorder.

Sorry to inconvenience the rest of you.  I was too busy 'giving my life away before the onslaught of autism - that I was too weak to fight - and now the rest of the country will parish.'

Autism Cure Research - Session 2

So I've been collecting lots of links and reading many articles, but I was struggling on where to start this next entry.  Until I remembered one of the most-profound things I ran across while researching.

I've read [and seen first-hand] several accounts of people wanting their children with autism cured.  When I try and talk to them about how I feel about it, I end up getting flack because I'm "not as bad-off" as their kid.  It is true, I have less-obvious deficits and I am able to be verbal in social situations [though not always in stressful ones].  However, I had a feeling that even autistic individuals who had more-severe deficits likely felt the same way I did [at the basis of this is a different 'wiring' in our brains and we tend to be very logical] and so I recalled something I had read regarding Amy Sequenzia: 

 [click image for link to interview]

Through reading Amy's work [and there are several others through ollibean] I felt that this was confirmed.  While I can understand the pain of not feeling like you're meeting the needs of a loved one [that one truly is both ways] may be it will help to read the words that someone very-similar to your loved one is expressing.  Everybody has unfilled needs.  Even NT kids have issues with bullies and making friends or not fitting in with the crowd or the cool kids.  Everybody wants something which is unobtainable [and if everything is always obtainable I would like my centaur-boyfriend promptly delivered!].  Everybody should also want things that are just out of their reach for it is that want/desire that challenges us to grow.  The giraffe was not born with a tremendously long neck, that neck was earned.  I was not handed the innate ability to automatically decipher the social ques around me, but I strive a little harder each day to learn more.

Once you get into this whole argument over whether I'd like some things to be easier or whether I take or took medication at some point it is almost as though no one understands that some of what makes my life harder also makes it my life.  Yes, I get overstimulated and sometimes I cannot cope with that.  But at the same time, my entire outlook on life is so different.  I would never dream of giving up my intellect, my thought-processing speed, my ability to see things from multiple angles, the gift of being able to look at something without emotional attachment, my amazing problem solving skills [which do get noticed], the fact that bad memories tend to fade [or if I have a bad experience, I cannot remember the person's face who gave me that experience and so I don't treat them any different the next time], my naive and open outlook on life [I always expect the best of everyone], and the list goes on and on.  Those things make me who I am.

Now, I did promise some research in this thing so let's see if we can get more than just 1 external link...
First, I want to start with "'non-verbal" autism by directing to an about.com article.  Summary: "non-verbal" autism could mean that a person is physically unable to orally speak or that the person is unable to use spoken language effectively/cohesively/etc.  Those people may [and several do] have the ability to speak but may do it through written work, picture cards, sign language, etc. 

I really intended to go more deeply into research and cures, but the farther I dig, the more upset I get.  I have to once again rely on MamaBeGood [because I really do not need to reinvent the wheel] for her awesome words.  I think the root of all this "cure" nonsense is the way in which the narrative about autism is expressed.  NT parents, caregivers, etc. hash and vent all the terrible things and there is not much focus on the positive things.  NT's frustrate the biggeldy-puck out of me yet I don't think they should be cured.  I've gotten into an argument about acceptance and that since I'm part of a minority [which is supposedly increasing, though I do not fully believe that] I should have to adjust instead of a greater population learning about me.  That is completely against the social narrative of this country in which I live.  There are far less people in wheel chairs, should we remove the wheelchair access ramps?  No.  We all deal with access ramps because of that portion of the population that relies on them.  How many times have you used the handicap door button? [directed to those of you who do not have a necessity for this item]  Did it not make your life easier when you were trying to get into a building while carrying items?  Maybe if you can adjust to take ASD's into consideration you may also find parts of your life get easier.  We really do have things to contribute if you give us a chance.  We're not smallpox that needs to be eradicated.

I honestly meant this to be far more "social discourse-y" but it actually ended up rant-y and it's almost 2am [which is my bedtime].

The stresses of struggling within a broken system

As I'm rounding out year four of being subject to "the system", I've had a lot of time to reflect over past actions, current consequences, and possible future outcomes.

I'm not so crass as to imply that I rate status with Robert Burgdorf or Crystal Lee Sutton *1 - however I feel that while the world is not fair, it should be just *2.  I look back at what I have dealt with and realize that, yes, there was an easier road; I just wouldn't have been able to look myself in the mirror every morning.  Never-the-less it has been a trying four years with at least two more ahead of me.  I'm tired, disheartened, and - unfortunatly - now lack belief in the systems designed to protect the average person [let alone the "special needs" individual]. 

There are many others, who are legitimately trampled on by a system which is broken, and many do not fight back because they have seen the fall of those who do.  Or maybe it is because they know they need to keep paying for that roof over their head or that food on the table.  This does not make them weak or stupid anymore than my fighting makes me strong or smart - or really vice-versa.  Sometimes I look back and wonder if I really made the right choice. 

I started fighting for my rights under the ADA so that I could maintain stable employment which would allow me to live on my own and care for myself.  I also wanted to avoid disciplinary actions based on difficulty working the same as everyone else because of my "diffability." [No, I do not have a strange speech impediment I just borrowed this from Ollibean]  I didn't really do either of those.  I do not write this to support a fight for what is right or to condone those who do not - I merely seek to reflect on what I have been through/am going through and take a deeper look at the broken system and why it is broken.
My hypothesis is that people with "invisible" disabilities are easier for employers to let [or intentionally force] "slip through the cracks" and ultimately mistreat the most *3.

Lack of understanding or knowledge [and sometimes the subsequent stupidity] leads to friction with coworkers and management (read as harassment) instead of support.  This friction complicates things by making it more-likely that attempts made to appeal to the next supervisory level fall upon the ears of people who have already been influenced by the opinions of people who, quite frankly, have no idea what they're talking about.  It also makes it harder to connect and maintain connections with other coworkers.

It doesn't get any easier when you struggle for your rights, only to find that none of the entities put in place to protect those rights can work efficiently or even with any weight behind their decisions (when the decision is in your favor).  My posts labeled as "Ms.Management" will address some of these issues.  Unfortunately, due to the nature of what I'm going through, some of the specifics (agencies, etc.) will not be detailed and some posts may be more general until a later date.  Even so, I hope these posts may eventually serve to be a source of encouragement, information, and possibly just to let others know that they are not alone in this struggle. 

So... my weekend...

I had all these articles and blogs marked to read but, you may have noticed I was AWOL starting Saturday... Saturday afternoon I was starting to work on stuff when JD came and picked Rocky and me up. We went to a farmer's market and then to JD's. JD made dinner and then we watched movies while Rocky alternately explored and cuddled with us. I ended up staying at JD's overnight.  Sunday JD took me out to run my errands (groceries, supplies for Rocky, and then a few DIY apartment projects - including hanging lamps so no more cords for Rocky to chew).  JD brought me home and helped me put everything away (and hang the lamps) then he spent the evening here.

I know this doesn't equal any work toward my blog (or an ever-increasing number of interesting links) but I had a nice weekend.

Just plain freaking angry...

Okay, so I acknowledge that I started this blog so that I could deal with a variety of issues (including those caused by the abuse/neglect/ignorance of my family)... However, after I had started, I thought maybe I would try not to do exactly what I'm about to do...  *WARNING* This is about to get negative and ugly...

(and so, I may have just secured the interest of 50% more people... lol)

Autism Cure Research - Session 1

Okay... I currently have so many ideas for posts that there are 14 drafts (outlining posts) and so far, I've 3 entries and none of them were ideas I had sketched out initially.... (okay, 1 is just me saying "hi" so I can cut myself a little slack there...)  So this only counts as one of those ideas as I was determined to do this after my rant (see yesterday's post... lol)

So, to begin (and no offense was intended...) I started with the individual who initiated yesterday's discussion - twitter account Age of Autism.  Okay, actually I started with some research, but the rabbit hole was too deep so I needed to start the entry and document this stuff because later I was not going to be able to put it into a cohesive order... so this isn't actually the first thing I saw (but you get to! yay!):

I believe the person we were talking with yesterday was Kim Stagliano...

Tweets too short for this discussion...

I guess "enough" depends on the type of treatment... but in my experience, people (even loving, caring, parents who "researched") don't understand what they're "curing."  Is the treatment temporary (stop doing/taking X and the effect stops) or invasive/permanent (I don't have a good example... are you going to operate on my brain?)?

Some 'behaviors' that are 'cured' aren't really cured, they just give the person with ASD more stuff to have to deal with.... in a world that can already be overwhelming.  Instead of letting us cope and finding ways to effectively let us manage symptoms/input/etc. from what I've seen people want us to be more "normal" (and I'm not alone in that opinion).

Did somebody understand the actual problem they were trying to fix??  Or is it going to be another instance where they taught someone with ASD to maintain eye contact - regardless of whether they could effectively communicate while making eye contact?  If all you want is "normal" then, I'm sorry, but you need to get off my planet.  I cannot always look you in the eye and make cohesive conversation - there's too much to process.  All you did was make an NT feel better.

And yes, we do get a little defensive when you want to "cure" us... How about we cure you.  One day if there are more ASD's than NT's, want us to try and find ways to change how you interact with the world in ways which might keep you from being able to interact?  This is what I mean about more information.  The treatments I've seen where they "fix" a behavior, they didn't address the reason why the behavior occurred, only took it away and replaced it with nothing else.

Did somebody consult ASD's regarding the therapy (in regards to behavior therapy, possibly medication) to understand why the behavior existed and, if modified, what would need to replace the behavior or make the behavior less distracting?  Are the people who developed the therapy and who are praising the potential outcome all NT's?

Twitter conversation below the jump.

(and I included the "medical acceptability" part at the bottom even though I want to talk more about that too... I just can't right now.)  Or maybe I can a little... Medication reacts very strangely with ASD's... I already didn't think they did proper testing on drugs (samples never include alternate groups such as elderly, overweight, groups with other medical conditions) and so 'wackadoo' stuff ends up happening to people in those groups.  Even drugs that are "tested" and "safe" end up with recalls, killing people, or causing huge problems later...

Dealing with Failure...

Failure can be hard to accept, especially when your initial reaction to any idea is opposition [oppositional defiant disorder can be included in the Asperger's package].  It's especially hard when you feel like so much depends on your success... trying to escape a bad home situation, trying to keep a job, trying to finish just anything... it could be a small task, or a large one, but if something keeps you from succeeding [especially if it is yourself] it can be hard to cope with that failure.

Inspired by: Failure?

First Post! Hello, world!

My name is Drea Erimentha and I have Asperger's Syndrome.  Obviously, this is a pseudonym but I feel it accurately describes me. :)