Friday, November 30, 2012

Speaking About #Autism- Rising Numbers and Funding

Yesterday was the House Committee Oversight and Government Reform  on C-Span discuss the riding autism numbers, and funding. I was deeply saddened by 70% of what was discussed and quite shocked at the outdated attitudes our government holds about autism.  I saw  many of speakers liken us to AIDs, cancer and repetitively call autism a disease.

There was some good testimony given by a few speakers. Dr. Alan Guttmacher, MD (Director, Eunice Kennedy Shriver National Institute of Child Health and Human DevelopmentNational Institutes of Health)
did a very nice job speaking about how we need to focus on the needs of people with autism now. He mentioned very specific things that can be done,as well as organizations that have made a difference in the lives of autistic people and their families, including those that are run by and for autistic people.

Friday, November 23, 2012

Tackling My Food Anxiety

Here in the US, yesterday was Thanksgiving. It started out rocky with me dreading the social gathering of my husband's family.  I knew that I would be okay in the end, but getting there was harder said than done. My anxiety built all morning, as every minute ticked by.  Despite the positives of the morning so far I was feeling more and more on edge. I had an opportunity to sleep in a bit, and wake slowly as my husband made breakfast for the kids.  I could not feel calmer, but one thing that was different than years past, I knew that I was being irrational.  I knew that I would be okay in the end, if only I just pressed forward and kept a positive attitude.

The other part of the day was that was difficult for me was that Thanksgiving is a holiday about food.  It's all about food and as many of you that follow my blog may know food is something I have issues with..  I was almost paralyzed in fear of the thought of eating all that food. Some of my thoughts were:

Monday, November 19, 2012

Why I Hide In The Atheism Closet






For many years my favorite song has been 'Imagine'  by John Lennon.  I seem to find that it is on many people's list of favorites.  It was brought back (as if it ever left) by A Perfect Circle, which is one of my favorite bands.  I can listen to it for hours, back to back.

I like the song for all of it's lyrics. I am an atheist. I don't believe there is a God. I don't think there is an afterlife.  I think today, right here, right now is all we have. I tried to be a Christian.  I tried Wicca. I tried several differently philosophies and have come to atheism, with a hint of Buddhism (which no deity is involved with) to be where I have comfortably settled. After researching, living and trying out different ideas I am pretty happy with being where I am. So, you may wonder, why is it you never talk about it?  Are you ashamed of your stance?

Thursday, November 15, 2012

Choices +Actions= Values A simple way to explain values to teens

I sat in the living room listening to my husband have a frank chat with our daughter last night about some of her recent behaviors last night.  I didn't intervene. I let him take the wheel.  This, I knew to be beneficial for them.  I don't always need to be the enforcer or the one who is solving the problems.  The issue is, if I am letting him solve them, I have to respect his process, which is often different than mine.  I may not have gave up that much control with Bubby, because he doesn't always understand Bubby the way I do. However, CJ is her father's daughter, for sure.  She may look like me, but she has his personality.  He understands her in ways I do not, as well as can read between the lines in ways I don't know how to.

There was a point I wanted to make, though. I did exercise all of my self control to not interject it.  I kept it 100% to myself, until now, because I will likely share this with them. lol

That point is:

There is no good or bad.  There are only choices. You make choices based at any given moment about what you value. Your values are not what you believe is right or wrong.  Your values are what you express by your actions. 



Right now, I am choosing to blog while I have lunch, instead of eating quickly and getting to my housework.  My actions are saying that, to me, in this moment , I value this blog over the 20 minutes I could be spending elsewhere.  It's not right.  It's not wrong.  It just is.  I will have consequences for that. Some positive,ie, I may help my daughter or someone else understand themselves, their choices and what matters to them most. Their are negative possible consequences,ie; I may not get everything that I need to done today.  By choosing this I am choosing those consequences.  Both the good and the bad.  Those were my choices, those are my consequences for my decisions and I am responsible for them.  We all do this everyday.  Every decision we make is a reflection of what we value and we have the ability to change more about our lives than we ever imagined if we stop and make our choices mindfully.  What we eat, what we wear, what we say, what we share, what we keep, these are all reflections of who we are and what we value. We aren't the past, or the future.  The only thing we can control is the present and we do that with our actions.

When I think of this concept part of the lyrics from The Dark Side Of The Moon-Eclipse come into my mind as an example of what I mean:

All that you touch
All that you see
All that you taste
All you feel.
All that you love
All that you hate
All you distrust
All you save.
All that you give
All that you deal
All that you buy,
beg, borrow or steal.
All you create
All you destroy
All that you do
All that you say.
All that you eat
And everyone you meet
All that you slight
And everyone you fight.
All that is now
All that is gone
All that's to come
and everything under the sun is in tune
but the sun is eclipsed by the moon.


Tuesday, November 13, 2012

Is This Offensive? Weigh in!

I think most of us in the special needs community will agree that the words we use are very important. There have been epic take downs of celebrity tweeters who misuse words that we have come to know as a diagnosis for our children, ourselves or someone we care about.  We advocate about being sensitive to others by choosing to use our words carefully and without malice.  So, we all know that the use of the R word is considered offensive, but what about the terms we used to use before the R word came into standard diagnostic use?

Do you know what those words are? I didn't, until I read something about it on Homestyle Mama (with a side of autism) page .  That was several months ago, but it has stayed with me, as I have tried to evaluate what the information meant to me and what, if anything, I wanted to do about it.

Here is some snippets from the this page that I have copied and pasted:

"Specifically, those who have an IQ between 0 and 25 are idiots; IQs between 26 and 50 are considered imbeciles; and those who have an IQ between 51 and 70 are considered morons.
These terms were popular in psychology as associated with intelligence on an IQ test until around the 1960s.  They were then replaced with the terms mild retardation, moderate retardation, severe retardation, and profound retardation.  In addition to this, other factors besides IQ are now used in diagnosing these levels of mental deficiency."

So you may think, hey, but we don't use those words anymore to diagnose people, so what's the problem? Well, one issue is that the people diagnosed with these conditions prior to 1960 who are still alive (and I know of one family member that is) probably still carry this diagnosis in their file.  They are still labeled as one of those words, as well as this fact:

" In Arkansas, Kentucky, Mississippi, New Mexico, and Ohio, idiots don’t have the right to vote."

And this fact as recent as 2007:

" California, idiots are one of six types of people who are not capable of committing any form of crime.  In 2007 the term “idiot” was replace with “persons who are mentally incapacitated” in the California legal wording of the penal code on this issue."

This part of the article is the crux of the matter to me:

" Ironically, the term retarded was used to replace the terms idiot, moron, and imbecile due to the fact that these terms gradually became thought of as derogatory.  This obviously only worked for a while and now “retarded” is itself considered a derogatory term.  It seems any word that basically means “low intelligence” is fated to be thought of as derogatory eventually.  So it’s only a matter of time before politically correct terms like “mentally handicapped” will come to be derogatory themselves."

How many times can we keep changing terms that we use to describe or diagnose those with intellectual disabilities? I know that I never use the R word, as I do find it highly offensive.  I have a child that has that word sprinkled all over his first report at the developmental pediatrician.  I'd never mock him that way. But,should I not also ban the other words from my vocabulary as well?  They are mocking others, too.  They are offensive to the mothers that lived before us.  There are still people alive that have that word in their reports from when they were children.  How long will it be before it will be acceptable for people to begin using the R word again to describe bad, or "dumb" things?  Should it ever make a comeback and if not, then would it stand to reason the others words are disrespectful, as well?


Monday, November 12, 2012

My Never Quiet Mind

I know a lot of my autistic blogger friends have been writing about special interests lately.  I have thought about doing a sort of post about it for awhile, but one has never materialized in my mind, or at least not in a way that has produced results.  I think about things to write about all the time. So much so, I have considered trying to make it into an actual career. I am always flowing with ideas to and topics that I want to discuss. This is because I never stop thinking.  My mind goes and goes.... So, what leads to this?  What does this feel like to me?

It is like I have a deep need for knowledge. It's more than a passing thought of I'd like to know more about X, or Y. No, it is way more than that.  I feel a drive that is not containable.  When something peeks my interest I feel such an overwhelming desire to know more about it that it is more important than most things to me.  It is a constant battle for me to get things done that I know needs done, while allowing myself the time that I need for researching and reading.  These interests can last a day, or years.  Sometimes, I have mini-interests that I research for an afternoon.  I will spend a couple of hours, or even a few hours over a course of a couple of days looking up information about an obscure topic that really has little bearing in my life.  At least, not enough to warrant that much time spent, according to most people, anyways.

I collect all of this information in my mind and it sits there, interconnecting with all of the other information that I have learned.  Once I read something, I rarely forget it.  I will remember it forever, as well as have the ability to link it up with new information in a way that allows me to have a broader understanding of how everything works.  Sometimes, I have facts that I know that I don't even know how or why I have that knowledge.  I just know it. 

Examples, of some of my search history on my computer,

*BMI charts, weight loss programs, and exercise programs. I know way more than any average person about all those things.

* Topographical Agnosia and well as directions to get to anywhere I ever have gone.

*ICD code for Aspeger's and autism-Autism is another big one, as well as other related disorders. 

*Craft project ideas for Halloween treat bags

*Dog related stuff.  Hours and hours of research about what kind of dog we have as well as how to train him.

*Post mordem photography- an afternoon of research into this little tradition.

* Lyrics to songs I like- lots and lots of those.

 *How to prepare squash, and every other thing I've made recently

*How to....get glue off of jars, train a dog, tell if _____ food is any good, cook _______ food, make _______ thing, fix __________,  Just endless How to's in my google search bar history.

To be clear here, I know that other people look up stuff on line.  I know that's not abnormal or odd. What makes it a bit so for me is the time I spend doing it.  I almost never go to one Google page of results and be done with it.  No. I read pages upon pages of information, sometimes, even taking it on a long string of unrelated topics, eating up my time and filling my brain with info that us probably not all that useful in a practical sense.


But, in truth nothing makes me happier than when I am learning.  It is the thing that makes my day good.  It is the substance I crave. I always need to know more. I am thirsty for information from that minute I wake up till the minute I go to sleep.  I can't think of  how awful life would be if I suddenly couldn't read anymore. If I suddenly lost my ability to be able to explore every little nuance that gets my interest.  My mind doesn't stop. It's always absorbing and needing more to digest.  It is an obsession, but one that is happy and harmless.  In this bliss I often forget that others don't feel this way. It's hard for me to comprehend that others find learning difficult, or boring when I look forward to it everyday with a childlike sense of joy.


Tuesday, November 6, 2012

Where Am I? Confessions Of A Place Blind Aspie


I have been working on this post in my head for a long time. I go back and forth on how to present this subject. It's one of a very delicate matter that carries with it a lot of sensitivity to me. To be honest, I have not wanted to talk about it, as I was afraid I'd be told I was just being exaggerative or that I need to stop making excuses for myself.  I hide this secret inside of me away from everyone, because I feel ashamed and like I have no assistance in making it better.

So do you want to know my secret-y secret that I hide away from anyone and everyone that I can?

Topographical Agnosia    Or Place Blindness.

What is place blindness?

Taken from here:

"Often confused for being absentminded or lazy, people with topographic agnosia have no innate memory for places. Just as a person with face blindness has a short-term memory for faces, the person with place blindness has a short-term memory for places. This means, that a person living on a street for five years would not be able to recognise the other houses on the street or in the neighbourhood if seen out of context. In testing for place blindness, a husband asked his place-blind wife to keep her eyes shut while he drove around their neighbourhood. He stopped in front of a house four houses down from theirs and asked her to tell him if she had ever seen it before. She hadn't. Despite their many walks in which they had passed it, she had no memory of it. Topographic Agnosia also explains why a person who loved hiking and being out-of-doors would never go by herself and couldn't remember the individual hikes. Unless they included waterfalls or a unique bridge or old growth, all the hikes looked the same to her."

This means, that to me, every time I go somewhere it is like the first time, even if I have been there many times before.  If I go somewhere everyday and get a strong sense of landmarks committed to memory, then I will be okay, but if I skip several days  in a row my memory will begin to erase itself and I will have to re-learn the route. This means that if I were brought into an unfamiliar area I could not find my way back home from which I just came minutes before.

It is not just limited to driving.  I get just as lost on foot, as well. If I go out different doors in a big building I cannot find my way back to a parking lot. I did this one time when I dropped my daughter off for practice at night at an unfamiliar part of the school. I must have accidentally went out different doors and I spent 45 minutes walking around the block and the school until I finally had to ask someone which way the parking lot was. It was humiliating.  Or, the other day I went with Beans to his Halloween party. The teacher wanted him to participate with the mainstream 3rd grade class, so him, his para and I went to the classroom. I had been to this part of the school a handful of times over the last few years. He (as I predicted) became overwhelmed by the noise in the classroom, so his para asked me to take him back to his classroom while she gathered up his treats. I thought no problem, right? Yes, problem, Upon exiting the room I had not remembered to consciously note any landmarks. I had no idea which way was which. It was essentially to me as if someone had picked me up and sat me down in the middle of an unfamiliar, foreign environment, even though I had just came from that hall not seconds earlier. I stood there trying to remember anything that could help me navigate my surroundings, then pondered if I could make it back on my own, so I tried one direction hoping I get a glimpse of recognition on the other end of the hall, but no, so I thought the safest thing to do was to wait for his para to come out of the room before I got us both hopelessly lost in the building!

I find driving difficult as it is. It's hard for me to multi-task in the way of paying attention to so much stimuli at once. Add place blindness on top of it all and I am hard pressed to go anywhere new or with high traffic. So many things need to be done before I can even attempt to go anywhere I am not familiar with.  I used to rely very heavily on my Garmin, but that was in my purse that was stolen a couple months ago. That navigation system was my safety net, my saving grace.  Now, I'm back to the old days where if I get lost while driving I have to call for help while trying to describe landmarks, because I don't remember streets and I have absolutely NO idea where north, south, east and west are.  These things are way above my ability to even comprehend how others know them.  So, the thief that took my purse has no idea, nor probably cares about how much of a predicament he put me in.

Other coping skills include:
*heavy use of google maps where I can visually get a sense of what the destination looks like.
*written directions with lots of landmark info written in, like when there will be a stop sign, what the destination is by ect
*how many stop lights I have to go through, so I don't panic and think I've gone too far.
*a back up route, in case the one I have is blocked for some reason
*lots of extra time in case I get lost
*someone to go with me
*No night driving unless it's an emergency or only a few blocks

This issue is by far the most damaging to my life. This issue is the one that drove me to get a diagnosis, because I was hoping that there was some therapy, help or assistance for it.  Not only was there not any, but I got the usual agoraphobia/generalized anxiety  excuse tacked onto my Asperger's diagnosis, which was very upsetting to me, because I really wanted help with this.  The clinician was not only ignorant of the disorder, but insisted that it was my anxiety that was causing to me to have these issues.  I insisted that getting lost most definitely causes anxiety, but it is not caused by anxiety.  I was offered social skill therapy and that was virtually all. I left depleted and misunderstood, even more so than I was before going.

So, I try to make my way through as best I can.  I hope by sharing this I can help others who are out there suffering in silence.  It is estimated that up to 1/3 of those with Asperger Syndrome have place blindness.  I know that I can't be the only one and I know there has to be more research done on this difference to help people like me understand the way we perceive visual/spatial information, but the only way that is going to happen is if more people are aware it exists in the first place.

More info on Topographical Agnosia:

Getting Lost














Monday, November 5, 2012

Daylight Savings and 12 Black Rainbows

Yesterday was the first day in Daylight Savings. People always get pretty worked up over still having to turn our clocks back and forth, "in this day and age".  I am beginning ti suspect that I am the only person that not only doesn't mind it, but sees a point in it as well as enjoys it.

Hear me out.

I have Seasonal Affective Disorder. I like the sun. I need the sun.  I want to soak up as much of it's deliciousness as I possibly can every day between November 1st to April1st.  Those months are hard for me.  If we change our clocks to a time where we are awake more and utilizing more hours of sunlight I get more of a chance to do that.  I also don't like it when my kids are walking to school in the dark, so I am okay with them going an hour later in fall, and winter in order to achieve that.  I also think it is better for energy conservation if we can use as much natural light as possible. Even an hour a day is a big deal when we consider the masses of people that are using less electricity to light their homes for that time.

Since this is a kind of off-topic fun type of post I thought I'd share a song that I ran across this morning as I wrote this post. It's by one of my all time favorite bands Type 0 Negative. The lead singer had bipolar and was very prone to severe depression.  This song is about that depression and since I talked a bit about darkness leading to depression in this post I thought that this might be an appropriate video:









Idle hands may be the devil's work
Unbridled minds you see are so much worse
Too much pity spent and wasting time
Irresponsibility not my only crime no

Obsessive thinking, depressed drinking
The person i once was, he's dead
Exhume the past this time or be my last
This is my final quest to remove my mask yeah

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Ice blue eyes follow me everywhere i go
Making my heart appear as lead
I hate to wish it but I'll tell you though
That i'm quite ready 'cause I'm already dead

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Thursday, November 1, 2012

Happy Birthday Bubby!

Tomorrow, November 2nd is Bubby's 11th birthday. I made this post so that he could see all the people that follow my page and know all about him. If you would like to sign his virtual e-card here, and wish him a happy birthday please do so in the comments section. Thank You!