Archive for the ‘surviving’ Category


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…

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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,


Managing Meltdowns

December 10, 2012

Information about managing meltdowns

I would love to hear from other autistic people, about what methods work for them, to manage overload and self-regulate levels of stress and emotion! Please share yours in the comments section! Also if you want to respond/comment on some of the ones in this reblogged list, please do!



Raising a Child with Asperger's Syndrome

Note: I apologize for this post being late. I had this post completely finished yesterday afternoon and my internet connection glitched and I lost 50% of this post.

 Reading Gavin Bollard’s article, Adult Meltdowns and Problems of Restraint, prompted me to ask several of my Facebook and Twitter acquaintances the following question:

As adults, how do you anticipate/prevent meltdowns? Or handle the situation post-meltdown?

The subsequent responses on twitter and Facebook were so helpful to me, I wanted to share some of my favorites ideas.

First I wanted to share my favorite definition of a meltdown:

When the sensory and neurological system becomes overwhelmed to the point of loss of control. This can look like rage or a tantrum but it is deeper than that. – Lynne Soraya

There seems to be three parts to meltdown control.


#5 – Know your Triggers. (@Sunfell) The first step to any of this is understanding…

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This time of semester SUCKS

December 4, 2012

Lately I have been feeling very overwhelmed with shit and often I end up feeling numb. Like I don’t care about school anymore. But that is simply not true. I do care. We do care. The grinding overload, plus the seasonal depression, makes concentration very difficult to say the least. I have spent much more time than usual reading blogs, and writing my own stuff. That isn’t going to help us learn Differential Equations or Abstract Algebra. It isn’t going to get our homework done, or help us study for exams. It may even be contributing somewhat to our depression, because we read about what other advocates are doing and we feel bad about not being more involved.

The middle of November is the start of the big push until final exams. Thankfully this semester we don’t have any writing classes. I think the less than ideal way we handle the pressure is THE reason why we cannot realistically be full-time in school. We simply cannot handle all the coursework of a full load plus all the other non-academic crap (keeping apartment habitable, grocery shopping, getting gas when we need to, etcetera. We will talk in more detail about these aspects of daily life in a different post.

Before the semester began, all of us were ITCHING to go back to school, because our summer break was TERMINALLY BORING. I can’t remember much about it at all. Other than wanting so badly to be back in school and advancing our study of mathematics.

Abstract algebra is fascinating but can be a pain in the behind. Differential equations- nom nom nom. But we haven’t been keeping up with homework for that class because the other class consumes so much attention span and time. Since we are autistic, we have alot of trouble keeping up with anything that isn’t college related also, in addition to falling behind on coursework sometimes. Most of our neurotypical classmates hate this time of semester also, since many of them have a full course load and may also be working. Bucketloads of stress for all!

As I have said before we all love being in college. And this semester we have been more social with our classmates (partly out of necessity- several brains are better than one when it comes to Abstract Algebra homework, and we cannot co-front to do our homework. It just doesn’t work.)

But right now, we just want it to be over already. This part of the semester really really sucks.

When it is finally over, we will probably be extremely relieved for a week or two, and then start itching for the next round.



Recalling an Instance of Extreme Sensory Overload on Vacation

October 18, 2012

I’m one of three autistic members sharing a body.

Being autistic, I often have problems with sensory overload. Loud noise, lots of stuff going on at once….lots of movement, trying to listen to someone and do something else at the same time……it’s hard. And sometimes I exhibit behaviour that is disturbing to others. This happened recently on vacation overseas. I was very overwhelmed already the last full day of vacation, and to top it all off, there was an entire table of noisy kids in the dining hall where I was eating with my family and a couple of our relatives. I sort of threw a fit….after being told several times to go get food, I got up, STOMPED over to the buffet, picked up a plate, walked over to the noodle bin, and took out a huge scoop and slapped them onto my plate in a huff. Then I turned around, STOMPED past where my family was sitting, reached the exit, yelled something to the effect of “finally some peace and QUIET!”, and ran off to find a table far enough away from the dining hall, outside. Then I cried. I was overloaded, disgusted, embarrassed, irritated, all at once.

And then the criticism came. I come from a family of neurotypicals. People who do not have outbursts after the age of 5 just because of loud noises. Basically that’s what my mother told me, that I acted like a young child when I glared at the noisy children and stormed out of the room. This event happened about three years ago, and I can still feel a lump in my throat as I finish writing this post. I can feel the pain in my head and my ears from the auditory assault I faced from the table full of children. I can feel the anxiety spiking. It was through the roof on that evening. I almost feel like crying right now while writing this. I couldn’t possibly think about how my actions would appear to anyone else in the dining area. This was at a hotel in Ladakh, which is a region of the state of Jammu and Kashmir, in extreme Northern India.

I already had a feeling that the criticism would come but I still couldn’t prepare myself for it. All I was able to think about that evening was making sure I remembered to grab food and then GETTING THE HELL OUT OF THERE. AS QUICKLY AS POSSIBLE. I was in tears because I was humiliated. I shouldn’t have been but I was. Probably because we have all grown up learning and hearing that grownups don’t behave like that. Ever. If they do then clearly something is wrong. Well, that much was TRUE! Something was VERY WRONG that night. My ears and brain were brutally violated! But in the neurotypical world that sort of thing doesn’t seem to count.

This is still very difficult for me to think about even 3 years later.

Parents, siblings, relatives, family friends: the next time your autistic child/adult/sibling/relative has a meltdown on vacation, please do consider possible triggers for those meltdowns. Try not to project your feelings of exasperation onto the autistic person. Chances are they are probably feeling poorly enough about the situation as it is. I know I was. I have learned to become pretty hardy over years of action-packed vacations. But we all have our breaking points.


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… 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


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.


Hiking Photography

Beautiful photos of hiking and other outdoor adventures.


Don't ever change yourself to impress someone, cause they should be impressed that you don't change to please others -- When you are going through something hard and wonder where God is, always remember that the teacher is always quiet during a test --- Unknown

Words Of Birds

Left the Nest


A brief summary of a early-middle aged man preparing to run a marathon

Shannon A Thompson

You need the world, and the world needs good people.


Ideas about English, Drama and ICT in the classroom, as well as some broader musings

-Ten Strong-

A Look Inside The Mind Of A Multiple

Choirduck's corner

When the music fades, all is stripped away and I simply come

The Life You Save May Be Your Own

DID, knitting, sci-fi, and strong opinions


David K. March And The Sociopolitical Blog Of Doom


Something interesting


Selected topics in Mathematical Physics

Tim Miller's Home of Fear and Darkness

Official Blog of Horror Author Tim Miller


a celebration of life

Of Fries And Men

Fries and Men. Two things women can't resist. Warning: Content may contain detailed description of fries consumption. Not suitable for those on diet.

It's a Wunderful Life

Life with Twins and Autism from a Dad's Perspective

Children's Book Reviews