Archive for the ‘mental energy requirements’ Category

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Reblogged: Not-So-Retail Therapy

February 24, 2013

This post reblogs a refreshing alternative to conspicuous consumerism, and adds some of our own thoughts triggered by the reblogged post. We should all strive to evaluate our needs and wants more carefully. There is a big difference between the two. Oftentimes what we THINK we need is actually a very strong desire, but doesn’t fit into a “vital” category: food, shelter, safety, water, health.

Speaking for ourselves, we find shopping (for ourselves) to be mostly a chore or obligation, and not one that we would consider “fun” or “relaxing.”

Shopping with someone else, to assist xem in finding things xe needs, is a different story depending on the person. For instance, our sister N needed to find dress shoes to match her dress for the Inauguration Ball (her boyfriend was on Obama’s campaign staff and the Inauguration committee staff also- thats why she was able to go). I (Andrea) and our mom met her in DC and we were out for 4 hours. I was exhausted by the end of it. All for a pair of shoes. But she NEEDED them for the occasion. And I figured since I don’t get to see N much now because we live 6 hours apart, that shopping was a way to spend some sister-time together. I actually insisted that I accompany mom and N on the shopping trip, to their pleasant surprise (they both know I hate malls due to noise and crowds.)

I was certainly thankful to be OUT of the mall when we all finally finished. After that I think we had a nice meal together. Mom and N probably said something about being proud of me for braving the mall for so long. I must have thought to myself “glad to help” and “thank goodness for comfortable ear plugs!”

Shopping for pleasure, to us, is an oxymoron most of the time.

Collaborative, mostly written by Andrea, finished by Ivan in her absence

Adventures in Thanks-Living

Most folks who know me well are aware that I do not take much pleasure in shopping–especially the kind of retail shopping that involves plunking down major cash outlays for transitory and often cheaply made consumer goods. In short, I just about have to be dragged to a shopping mall.

That said, I can understand how shopping can be classed as “retail therapy.” There’s the thrill finding that seemingly perfect item to fill a need, or more likely, a want in a person’s life. I’ve been there and done that and have come to find the outcome severely lacking.

Now I practice “not-so-retail” therapy. Let me explain. As a member of The Compact, I avoid buying new items that contribute to an ever-growing waste stream and violate principles of justice and equity that I hold important.

My latest “not-so-retail” therapy sessions involved Goodwill, Staples, and Dollar Tree. Here’s the…

View original post 635 more words

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From Guilt to Acceptance of a Smaller Role in Autistic Advocacy

February 21, 2013

So we have been dealing with many guilty and unhappy feelings lately. Let me be clear first: NO OTHER AUTISTIC SELF ADVOCATES ARE IN ANY WAY RESPONSIBLE FOR OUR FEELINGS. We haven’t, fortunately, read any posts by any advocates we know, that suggest that autistic people who aren’t involved heavily in self advocacy are bad people or not serious about wanting better representation in society. We haven’t been more involved in advocacy for several reasons. We are currently in school pursuing a bachelor of arts degree in mathematics. We have had many difficulties in school which are mostly unrelated to subject matter. Though this semester, we have had trouble with some of that as well.

These guilty feelings are doing absolutely NOTHING to help us. Well duh. They are directly NEGATIVELY affecting our concentration. They pervade our waking thoughts (not all the time, but even a few times is too many!). They are unwanted intruders.

We feel guilty about having arrived late on the scene of autistic self advocacy. This is true mainly because prior to our diagnosis, we had no contacts with self advocates, nor any occasions to learn about the movement. Had we known, we probably would have tried to get involved sooner.

Again, we must reiterate our prior assertion that NONE OF OUR GUILT SHOULD BE BLAMED ON ANY OTHER AUTISTIC SELF ADVOCATE! Our current life circumstances (primarily being in college) mean we don’t have as much time or energy to dedicate to advocacy. We just have to embrace a less visible, but no less important and significant and MEANINGFUL role in the process.
There will ALWAYS be a need for advocacy in the autistic community.
Our advice to anyone feeling a similar sense of guilt,

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WHAT THE ACTUAL HELL??? Or, Fuck you, OryCon!

November 6, 2012

Wow. So apparently Orycon, a sci-fi convention in Oregon that had scheduled an autism panel WITHOUT AUTISTIC REPRESENTATION, said, after being called out for not having autistic representation, that they would cancel the panel discussion.
The advocate doing the calling-out even explained what the problems were with the panel.

What she got for all her efforts and energy and VALUABLE SPOONS was a fake apology.

Yeah. She spends alot of time and energy and that’s what she got. I don’t really understand the entire situation to be honest, but I know enough to be absolutely outraged.

BUT WAIT, IT GETS BETTER! I couldn’t make this shit up if I tried.

THEY HAD THE FREAKIN PANEL DISCUSSION!

Because of YOU, OryCon organizers, certain advocates will probably need days to recover from their frustration and overload and wasted efforts to explain to you what was wrong and how you could correct the situation.

I don’t believe this shit. OMFG, I’m so freaking angry right now.

But I highly doubt this is the first time something like this has happened in the history of autistic self advocacy.

K, and whoever else made such an effort to reach out to these goons on behalf of autistic self advocates everywhere, I am deeply deeply sorry, that your valuable energy was so shamelessly disrespected.

These people clearly had no appreciation whatsoever of the time, energy and stress you may have gone through in order to advocate for yourselves and the rest of us. But I surely do appreciate it. I would never have known about this if K and others hadn’t blogged about it in the first place.

And yes, I used the word goons to describe the organizers of OryCon. Why? Because they fucking lied about having cancelled the discussion panel. Bullshit they weren’t aware of it happening. Read K’s posts I linked to. All of them.

I hope this gets signal boosted into the stratosphere!

Nothing about us, without us!

Ivan, Andrea, and Athena

 

 

 

 

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Limited Spoons today

October 13, 2012

Not feeling that good today. Lots of stress. Possibly triggered by blogging and looking at too many drafts and thus having too many thoughts going around.
Ivan

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Wishing we had more stamina

October 13, 2012

wishing I had more stamina to type out drafts. I guess I have trouble because so many more words can come to mind when I am typing a particular thing. I can’t just turn them off and keep going, because they are most of the time at least somewhat connected to whatever draft I am typing….I’ve had similar issues this year….2011….I know I had so many ideas floating around in mindspace…..some even could have been entire entries…..but through some combination of lack of stamina, laziness, busyness, or lack of desire, I couldn’t get them out. None of us could. This definitely relates to another post we read here

In which the author, a well-known and excellent autistic advocate, laments her inability to write on topics she cares about for various reasons. It’s a great post, you should read it!

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Anxious Energy, among other things

April 8, 2010

Warning to readers: it’s pretty late as I am writing this so it’s probably gonna be really rambly at points. Sorry in advance.

Lately we have all had many things on our minds that we’ve been wanting to talk to various people about and blog about, but the energy required to do so has been notably absent. Sometimes this energy is just physical inertia…..thinking of stuff but not being able to get to the computer to blog…..frozen body, or other thing that prevents blogging. Other times life gets in the way; Mom wanting help in the kitchen, sis wanting us to proofread her thesis (bachelors, not phd dissertation)……and various other stuff.

At this particular time, I really should be in bed, as I have an important visit with the admissions director and possibly other personnel from a program that helps students like myself (well, OURselves actually, pardon the back and forth between my and our and whatever. As I (Andrea) have said in my warning, it’s late.

I can’t sleep. There are so many things going through my head right now. Ivan is having an internal meltdown(manifesting only inside the collective mindspace, and not outside our body but still very audible and disturbing to me). He hasn’t been well for the past several weeks. Poor chap, it really kills me to see and hear him in such bad shape.(yeah, you read right; we can see and hear one another very clearly from within the collective mindspace.

I need to be back in school. All of us need that. I/we can’t deal with life otherwise. It’s insane……I feel like I’m on a rollercoaster that keeps going round and round and round in larger and larger circles…..throw in some figure-of-eight loops, add NASCAR-winner speeds, and it’s a true miracle we haven’t TOTALLY gone off the deep end yet. This is total and complete lunacy. I have important things to do tomorrow that will require me to be all there and focus (which in turn requires a decent amount of sleep; thank God Almighty that it’s at 10am and not earlier….) and what am I doing instead of being in bed? I’m rambling. Believe me, I tried for at least half an hour (probably more, who cares though) trying desperately to ignore all the shit in my head and fall asleep, to no avail. Thank God again that I happen to be in a hotel that doesn’t charge by the minute for internet use. Otherwise I’d probably be in bed still, trying and failing to fall asleep for another couple of hours, and that’s if we were lucky.

This entry is turning out somewhat differently than we thought it would….not really surprising though. Some of the anxious thoughts we were having, were simply due to the fact that we’ve had shit pent up for ages and ages. I suppose it didn’t all have to come out, some of it is resolving itself in some kind of way as I sit here and tap out as much as possible before I absolutely have to go back to bed. Opening the damn door of my room was a trip in itself (Dad and I are sharing a room, since he’s checking out the program also) and he sure as hell isn’t a night owl. I’m sure I woke him up when I closed the door after exiting the room if not before. I’m not looking forward to going back into the room and probably waking him up again. Oh well, you can’t win em all I guess………

Now I can feel exhaustion creeping up on me. I suppose I’ve expelled enough of the anxious pent up words that were circling in the mindspace. Hopefully when I go back to my room I’ll be out like a light in a matter of minutes. Ivan has worn himself out from his meltdown. Athena and I really worry for him. Sometimes when she hears him thrashing around and screaming (again happening in mindspace, but when he’s fronting, he’s physically done this before) she starts crying…..and it’s all I can do not to flip out myself (now THAT would be a PHYSICAL manifestation, no longer in mindspace, as I’m writing this from my perspective as the one fronting at the time.)

Wow. None of us have ever gone this far into detail about the inner workings of our system. It’s amazing what anxiety and desperation will do.

I think I’m exhausted enough physically to finish this entry right now and head back to my room.

<<Internal conversation…>>

<<Ivan, I’m really exhausted now, can I go to bed please?>>

<<I wait patiently for a response. Athena yawns and mutters something about our body needing enough sleep.>>

<<Athena: come ON, Andrea!>>

<<I say to Athena: I know, hang on>>

<<Ivan flaps his left hand in my direction. I’m not sure how to interpret this gesture, so I say to him: Ivan, I’m not sure what you are trying to tell me. I asked you if I can go to bed now, since it’s well past the time the body and brain should be shut down for the night in anticipation of…..at this point Ivan is shaking his head vigorously and covering his ears. Integral too much break down derivative, he says. That translates roughly as follows: Integral (my mathematical name) I cannot process that much information. Tell me shorter please. I try again. Ivan please flap your hand up and down like yes if I can go to bed.>>

<<Ivan flaps his hand up and down like yes.>>

Well that’s all folks. Phew, I’m exhausted. But I feel like my head is ten pounds lighter. That’s definitely a good thing.

Goodnight, wish us luck.

a very pooped out but much less anxious Andrea

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Feeling like a tired old man-Part 1

July 10, 2009

The title of this post says it all. We cannot come out to our parents about being multiple, and there are other things about our autism that we can’t share, or don’t know how to or even don’t want to.

The net result is frustration on both sides. Mom telling us she cannot rely on us for anything…..over and over, tell us that enough times and it’s like a self-fulfilling prophecy. I guess this is the final result of so many times being spoken to in an accusatory tone by her….she does that to EVERYONE in the house at different times. Dad and sister are not immune to her accusatory tone, and they both function much more closely at her level than we do. Dad just yells and tells her to shut up. Sister sort of acts like a pushover….yes ma’am, no ma’am, anything you say, ma’am. She doesn’t literally say that but she has a way of just shutting Mom down, we don’t even fully understand how it works. Unfortunately no one would believe us if we told them part of the problem is being accused so many times or spoken t0 in an accusatory tone, even when things were going well. We’ve had this on and off issue with Mom ever since grade school! And we live at home, also another major problem. Sister can get away during the academic year because she goes to school in CT and lives there. We’re not so fortunate. We love our university, but we hate living at home, and parents have said that we have to first prove that we are capable of “behaving responsibly” first before they will let us move out. Um, hello, DOES ANYONE ELSE SEE A PROBLEM HERE?

We’ve been in this environment for so many years off and on, it’s started affecting our ability to take responsibility and even study, since Lord only knows when, etc.

We don’t really expect NT’s to get this at the same level as autistic people, but we’ll be grinning from ear to ear temporarily if they do. Our parents sure don’t, and every time any one of us tries to even bring this up indirectly, Mom invariably claims that “we’re just blaming her and not looking at ourselves in the mirror.”

This isn’t the whole story. I don’t have the stamina or time to write it all out at once, because I cannot afford to fall apart in a public place, and I have a project to work on.

Ivan

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