Archive for the ‘autism’ Category

h1

From 2006- Airplane ride to France

February 27, 2013

We went to France- August 4th. 2006. I delighted in watching the moving map on the small TV on the back of the seat in front of me. Maps have always fascinated us, especially moving maps! That’s one major reason why we loved the weather channel growing up. The forecast involved alot of maps! Our favorite part of the forecast was when the map was put in motion and we could see where the weather features had been, and where they were heading in the future.

On the flight there was a little tv with options for in flight entertainment. I loved the “interactive map” screen because I could see the whole flight path and how far we had travelled and how far we had left to go.

We have since seen more moving maps on flights, this one just happened to be posted as an entry-in-progress, which has taken us quite a while to finish! Much of our writing here is stuff we started many weeks prior to posting. We wrote about that in another post.
We just LOVE moving maps (one of our special interests/perseverations) and I am glad that Athena started writing this.
We have some entries planned about the trip itself by the way.

Started by Athena, more writing by Ivan
Collaborative but writing done at different times.

h1

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

h1

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,

h1

Being responsible versus being given a responsibility (or several)

February 18, 2013

What is the difference between being responsible and having responsibilities? To give someone a responsibility does not necessarily mean that the person is now responsible. The word “response” which means “a reaction or reply” to something, is the word I think of when the words responsibility or responsible come to mind. Actually, a friend mentioned this thought to me at a dinner outing last night…we were sitting at Noodles and Company, close to where I live, and we were talking about that briefly over a scrumptious (boy I love that word!) meal of spicy Indonesian peanut saute noodles. A person may have the responsibility of raising a child, but that alone does not a responsible person make. There are countless stories in news, past and present, of young people and celebrities having children without regard to the kinds of RESPONSIBILITIES they would have to face, and when they do not face them properly, they are not RESPONSIBLE.

A responsibility is an obligation bestowed on someone, and “being responsible” is a character trait usually acquired over a certain period of time. The length of time depends of course on environmental factors such as life experience, age, education level (sometimes, not always) and other things. We may explore some of these other things in future posts. People with disabilities can certainly be responsible. That discussion deserves its own post.

Being responsible is learned behavior. NT people learn it by observation and imitating peers. So too can autistic people, but it can take much longer. First do we understand what a responsibility is? Autistic advocates definitely have responsibilities that they take on themselves. Some of us organize protests against Autism Speaks events. Others organize major events such as the ASAN annual gala. Need link to this. Include more examples)
Others give presentations at Autreat, the annual retreat by and for autistic people.

The advocates who participate in these activities have chosen to take on these responsibilities. They are not forced or coerced by others to do these activities. These are real responsibilities though, just like going to work if one has a job, going to school (in my case) or taking care of one’s children. And some autistic people have children too, but that isn’t all that relevant except it is another responsibility that some of us have.

We will have other blog posts upcoming about things related to this: specifically we have plans for a post about the damage parents/family can do to autistic people by calling them “irresponsible” for not doing certain things. If you have something to say about that, or this post, we would love to hear from you!

Collaborative, all of us (finished by Athena)

h1

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.

h1

Reblogged: Shopping Expedition gone Awry

December 16, 2012

Wow. There are so many things wrong in this situation. Talk about deflating! This kind of thing is what many of us autistics experience in daily life. We need to figure out how to educate staff in grocery stores and retail in general, on proper etiquette when interacting with disabled customers who happen to bring friends/support people.

I would love to read suggestions from other self advocates, on how we can educate customer service employees to interact appropriately with autistic people and others with disabilities that might cause them to “appear” less intelligent, for lack of a better expression. Especially those like E who went with a friend, and had the employee talk to her friend rather than directly to her.

My wording is poor, but this has to go out. We have been sitting on this post for a very long time now.

Andrea

The Third Glance

While I know this is really minor compared to some things people go through on a regular basis, and my visible disability is temporary, I just wanted to share a story that happened to me yesterday. Not for reactions, just to point out that things like this happen. All the time.

I’m still on crutches, and as such, need to go with someone to the grocery store. My friend and I have a deal that involves a weekly trip, and we’ve been shopping together for more than a year. I keep him on task (he spaces out a lot, plus, I know where everything in the stores we go to is, and can quote prices, too), and he deals with people for me. It’s a good trade. So anyway, we were on our way out of a store last night, and were about 20 steps away from the register and…

View original post 763 more words

h1

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

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

HarsH ReaLiTy

A Good Blog is Hard to Find

Words Of Birds

Left the Nest

brovemberuk-blog

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.

re-Education

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

dkmnow

David K. March And The Sociopolitical Blog Of Doom

Izendatzen

Something interesting

MathPhysBlog

Selected topics in Mathematical Physics

Tim Miller's Home of Fear and Darkness

Official Blog of Horror Author Tim Miller

helobiae

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

TurtleAndRobot.com

Children's Book Reviews