Archive for the ‘resilience’ Category

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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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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.

Ivan

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Random update crap

October 26, 2009

This post is basically to let readers know that we’re still around………other things have taken precedence over blogging for now.

We have a friend over. She comforted Ivan the night before when he was very down and distraught saying that he had no direction. Last friday I had a kind of meltdown in front of my Differential Equations professor……..he said that he was tired and needed to wake up, I said……..”well, if you ride your bike across my neck, the sound will wake you up!”

Thank goodness he’s not the type to freak out…..

Bleh, I’m tired……..4 hrs sleep sucks…….I’m going home for lunch……..and then coming back to do…….my math homework. The other math………multivariate calculus. One would think that the second time around would be a lot easier…………I hate Webwork! Freaking problems on the computer to do……..I just end up forgetting about them until the last minute and then there’s no way I can do all those problems in just a couple of hours. I don’t  have that kind of attention span and focus.

The Integral, who better start living up to her name

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38th DBC Entry: Our thoughts on Disability and Spirituality

May 13, 2008

Once again we have a very fascinating topic to work with and write about for this next installation of the awesome Disability Blog Carnival. I (Ivan) will try to elaborate on all of our thoughts on the subject. 

We are all Eastern Orthodox Christian. Athena’s significant other/friend and mentor to myself and The Integral is Eastern Orthodox, and Athena and the rest of us had been investigating that religion for some time. The fact that D was born into it, and it requires that all of its adherents marry other Christians, prompted us to accelerate our learning and understanding, for eventual conversion and baptism. Athena met D at a very dark time in our lives; we were under a misdiagnosis of bipolar disorder and had to take several heavy medications, including lithium and depakote. (there’s my topic for whenever I host a dbc edition.) We were exhausted, physically and psychologically, on a near-daily basis. At some point Athena was convinced that we were all dying of cancer, because our body was just so damned run down and worn out all the time. We weren’t DOING much physical activity to speak of, and so we were all flummoxed (utterly confused) as to why we were so tired. We later discovered that our tiredness was a side effect of our medication. We slept lightly and fitfully at best, and our sleep was rarely the restful kind. We could lie in bed with our eyes closed for hours but never really get our quota of needed “rest and relaxation” that would keep us from being so tired all the time. Medication can mess with many different body systems. 

What does this all have to do with disability and spirituality? Well, during that very dark time in our lives, we prayed a lot. I mean, every day, several times a day, hoping that we would be heard at some point. We needed SOMEONE to hear our despair and desperation, and we found solace in Jesus Christ. Our lot didn’t improve drastically, but our prayer and private time with Christ made life possible. Eventually I (Ivan) gave the others an ultimatum: we could either quit our meds and stop the bullshitting around with our life and leave our parents’ home to figure ourselves out, or we could all die and take the rest of the family with us. I tend to be somewhat of a militant, hence the two drastic options. Needless to say, since we’re all still living, we chose the first option. I believe that prayer led to our finding that particular solution to our problem. It was not a perfect solution, but it was the only viable, ecclesiastically legal solution we had. It was the one solution we came up with that would allow us to be free of the pharmacological thieves that were robbing us of our minds, our body’s physical strength, and the very essences of who we were. The Integral had been living in suspended animation, not dead yet not alive. In fact, we didn’t realise how separate our identities were (me-Ivan, Athena, and The Integral). We were only focused on living by the minute, passing the time, and most nights going to sleep and praying that we wouldn’t wake up the next morning. 

So spirituality and religion has a very, very important function in our lives. We although think that our disability -(now correctly diagnosed, might we add. well, as correctly as possible. autism and asperger’s, what’s the bloody difference?)- has a major role in how we interact with our Lord. 

Most of our prayers are silent, in that we do not outwardly vocalise, but allow God to listen to our thoughts. We aren’t gifted orators when it comes to prayer, so what’s in our minds has to suffice at the moment. 

We dealt with the dark era of our existence in a very autistic fashion, even though we were not diagnosed as such at the time, we were interested in analysing every little detail of our feelings throughout the days and months spanning those three years, to the fullest extent that we were able. Spirituality, as I said before, helped us, nay, allowed us, to survive that time of chaos and destruction to our minds and body. 

I hope this is along the lines of what the topic is supposed to be about. 

Ivan

with input from The Integral and Athena

 

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