Archive for the ‘family’ 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…

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Feeling Intruded Upon

December 19, 2012

Why the hell do people always think that even when I seem to be sitting around doing nothing, I might be far away in my mind-fortress and not want to interact(even to respond to a request to do something) or be disturbed? The following is just one example one of us came up with(possibly Athena; she likes watching insects. That says NOTHING whatsoever about her “functioning level”, by the way. So “I” refers to Athena. She wrote this draft many months ago, like most of our recently published entries) While I was observing some insects going about their business, my mother asked me to hang up the laundry. Okay, forgiven. She doesn’t know that I drift away somewhere else, because I have never really told her, so she has no way to know. I have intentionally not told her or anyone else in my family. (Not the full truth; I can’t figure out how to tell them in a way that wouldn’t result in awkward questioning.) So this is more of an internal dilemma and rhetorical question than anything else. When I did not respond to her request/demand, she “invaded” my fortress a second time, and penetrated more deeply with her speech and body language. Feeling cornered, I responded (I can’t remember what exactly I said, besides “yes” or “okay mom”) to make her retreat, because I didn’t want to continue the interaction at the time. I just wanted to be content sitting on the steps, watching the insects. Alas, Mom would have me do something else.

In another post we will try to explain the benefits to us, of being able to “go away” into our mind. It can be calming and rejuvenating. But there is also a downside, such as when our thoughts get into a negative, repeating loop. It happens more to Ivan than myself or Athena. We aren’t sure why. That issue is probably worth a post on its own.

Collaborative, Andrea and Athena.

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when we were younger

December 13, 2012

*TRIGGER WARNING FOR BRIEF MENTION OF PHYSICAL VIOLENCE NEAR THE END OF THE POST*

I got the idea to write this from reading a label on a Lean Cuisine entree………”cocine en alto” which is Spanish for “cook on high”. When we were younger, we used to think that “alto” was a language, because we heard a friend of our housekeeper talking about it……..didn’t realize it meant the vocal part she sang in the church choir. I knew she was from a different country so I thought that her language was called Alto.

We had another post about something very similar. It was about Peter Pan and his pixie cohort Tinkerbell. She was dying because she drank Peter’s medicine that Captain Hook had poisoned. Peter asked people to clap so she would get better. Our out-of-body sister Natalie (Not her real name) and I were sitting on the couch watching, and we clapped because we thought Peter was talking to us. Can’t recall ages now. This was definitely more than fifteen years ago.

We (myself Athena and Andrea; though at the time we didn’t know about plurals and DID or even autism) also had other things we liked to do alone. Weather intrigued us quite a lot, so we would go to our room, close the door and then take out our beads and pretend the floor was a weather map. We put clusters of beads on the ground to denote storms. We made bigger and more circular or spirally clusters to denote hurricanes. We called it weather for The Littles. We don’t mean littles as in “insider children”. We meant small people. Very small people. Like toothpick sized. And invisible too.
We didn’t want anyone else to see what we were doing. This was a long time ago, so I don’t know why. Perhaps it was embarrassment? Not sure. We would often close our door in poor Natalie’s face. Well, not literally but I’m sure it felt like that to her. We wanted that alone time. To enter the world of the Littles and tell them what kind of weather to expect for the day.

It was a ritual that happened almost every day, probably around the same time. We cannot remember now, how long it lasted.

When we closed the door on Natalie, she often cried. That made us more annoyed because of sensory aversion to crying. We probably couldn’t understand why she was crying. It didn’t occur to us that she could be upset about not getting attention from Big Sis.

So, she would retaliate, by closing the door on us. I had no clue the events were related. It didn’t make any sense whatsoever at first. And also, there was a sense of “she is doing it to be mean, but I wasn’t.” We certainly felt that she was bullying us, and didn’t think that she might have felt the same way.

I would get upset at her and hit her or sit on her. I didn’t know how else to behave. I was less than ten at the time. We weren’t diagnosed as autistic until much later (we were almost 22).

We are pleased to report that today our relationship with Natalie is very deep and loving. We lift each other up. She doesn’t have as much time to talk to us as she would like, because of work and her own social life. We are also busy with school, especially at this time (end of semester, preparing for final exams, etc.)

This is one of a few posts we plan to write about our childhood.

Andrea and Athena, collaborative

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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!

Thanks

Athena

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.

Prediction:

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

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Some thoughts on Ending one’s life

December 7, 2012

Don’t worry, readers: we aren’t going anywhere.

TRIGGER WARNING FOR MENTION OF SUICIDE!

SPLAT SPLAT SPLAT!

I just finished reading a post by ama about how a doctor said “you are an incompleter” when talking about failed suicide attempts made by the aforementioned blogger. As if completing suicide were some kind of honor that was better than failing to complete it? What an idiot that doctor was!

Alas, the post I was referring to in the beginning no longer exists. The user took down their blog some time ago. This post was actually started a couple of years ago (at least).

Suicide is one of those things that is best left unfinished (meaning someone finds you before you can do it) Or even better, not started at all. I talked to a friend about this topic a while ago, and said friend may well take issue with this post. We don’t agree on everything, which is perfectly okay with us.

We are of the collective opinion that suicide is very hurtful to family members left behind. ( not that my sisters cannot think for themselves. They came to the same conclusion as I did, by different paths.)

However, we are well aware that not everyone is so fortunate, blessed (for fellow Christians) or whatever word you want to use, to be born into a healthy, functional (no major violence or drug or alcohol problems or major trouble with the law-nothing to do with functioning levels) loving family.

But OUR experience is of being born into a loving family; therefore we are not really qualified to talk about other kinds of family experience in first person narrative as if we are living it. This experience is what has shaped our view of suicide, as a most unfortunate final act. We have no intention, with this post, to disparage anyone who has family experience different than our own, or who happens to view suicide differently than we do.

This post was initially inspired many months ago by reading a post we referenced in the opening sentences.

No one should have the misfortune of being called an incompleter by xyr doctor due to a failed suicide attempt.

The original title for this was “Incompleter My Arse” but when I wrote more it just went in a different direction. Which has been the case for many of our recent posts since they were begun many months ago and possibly by another author(either Athena or Andrea)

Ivan

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I love my family. But…

November 13, 2012

I love my family BUT….they can be too critical. They can be very impatient. They don’t respect the boundaries of the fortress (well that’s because they don’t know it exists in the first place. It is that way for a reason. More than one reason in fact.) I don’t think they’d respect those boundaries even if they were aware of them, and actually it would be even worse for my privacy if they did know about them. Our mother has a tendency to make assumptions about our abilities based on inadequate information (we can’t or won’t explain fully what’s going on.) For example when I say to her “gee, this math is really hard,” she might say something like “well, you know, nobody is FORCING you to do it, you can do something else!”

This drives us nuts! And what drives us even MORE nuts (and makes us anxious and unable to fully disclose or even halfway disclose all of our struggles) is that when we DO open up about certain difficulties we have, for example going to sleep at a decent time, which we do understand is important, mom says something like “well then maybe you shouldn’t be worrying about college right now.”

That drives us absolutely bonkers.

Here’s another thing that drives us nuts. When we were living at home, and not in school, Mom wanted us out of bed by 8:30 in the morning when we had no reason to be up at that time. She expected us to do this without fail. Then she would give us chores to do. Which wasn’t a problem really as we were living there rent-free. The idea of waking up at a certain time every day in the morning is actually an idea that we can embrace! But the manner in which she finger-wagged and something in her tone made us instantly averse to it.

In fact this has been a common occurrence with our family and our mom in particular. She is often correct in her assertion that we should do things this way or that way, and her advice is not wrong. But the HUGE PROBLEM is with the MANNER IN WHICH she gives said advice. We aren’t sure how much our averseness to it has to do with our particular neurology and how much of it has to do with the parent versus adult child dynamic. Things like tone and body posture and yelling really get in our way of being able to listen to and make proper judgments on the merits of her suggestions. Another major issue is that we cannot articulate in the moment, why we cannot or will not follow her advice, because of all the vibes getting in the way and feeling put under a microscope. It’s very difficult to come up with a concrete example of what we’re talking about here, but if we do manage to come up with one we will write it up in a separate post and link to it.

All that said, we do love our family.

Ivan

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Heated debate with family members

October 14, 2012

I was talking to my sister and mother about autism. Heated debate, ugh, got frustrated. They don’t understand about autism rights. Mom told me that the websites I visit for the real truth about autism, may not be true after all. I think I would know better, thank her very much.

This happened many months ago, and we cannot even really remember at all what exactly the content of the discussion was, except what was written above as a draft. I am pretty sure this is a common theme in the disability community; heated debates with nondisabled family members about advocacy related things. They think they know us better than we do! How many people have been told at some point in life, by family or relatives, that the time spent online seeking out POSITIVE writing about xyr disability, or positive advocacy, is wasted time?

Collaborative, Andrea and Athena

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talinorfali

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

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