Goal Reached!

My ChipIn goal has been reached!

Thank you all who contributed!!!

It'll take a few days for the money to clear from Paypal to my bank, but it shouldn't be more than a week.  

I'll be covering the taxes myself; I figure it's only fair that I do pay some of the costs myself.  And with all of the support I've gotten with everyone, it won't be quite a burden on my limited funds! 

Now comes the fun part; what colour should I get it in?  Hmmmmmmm.....  

The Goal is in Sight

We're 63% towards raising the money for my educational iPad.  That's $395, meaning $224 more to go!!!

If a lot of people donated even just $10 each, it would be fantastic!!  Or just shared this around to reach more people!


One thing that I'm looking into is the iPad Mini.  While it's cheaper than a full iPad, I have my doubts about it's size being suitable for my dexterity. I think that I'm still going to find a full iPad to suit my needs, and even full sized, much more portable than a laptop. However, I have to at least give it a chance and test it out.

For organizational sake, here is my history and experience with assistive devices plus my reasoning behind getting an iPad, and here is a list of the types of apps I plan to get for my iPad to use at school.

Should this widget not work for you, there is also the ChipIn page. 

2012, An Anniversary

For me, 2012 is somewhat special.  You see, ten years ago, in the fall of 2002, I sat in a psychiatrist's chair and heard the words that pretty much changed my life.

It's been 10 years since I've been diagnosed with Autism.   That's ten years of self-discovery and growth, of learning to understand myself, not as broken or a monster, but as an autistic person with strengths as well as weaknesses.  Ten years of learning what works for me to use my strengths instead of my weaknesses.

Ten years of learning to be comfortable with myself, with my own skin and ways of doing things, of forgetting the rigid rules I made for myself in attempts to conform and fit in.  Ten years of undoing all the damage that I've done to myself in order to fit to some abstract concept of normal.

Ten years of being free to just be me
Ten years of making friends who accept me for who I am, not who I pretend to be.
Ten years of friends and people who not only accept, but celebrate and cherish my gifts and differences

Ten years of learning that I am no less different and not alone.

I am never alone.

You are not alone.


It is also another anniversary.  On October 31st, 2008, I graduated from Wilfrid Laurier University with a General Bachelor of Arts in English.  After six years of studying in the Honors program, I decided that I really didn't care to write another essay on abstract literary terms and found the loophole that let me graduate "early".  I liked the university lifestyle, at least, the rather geeky aspect of it: the schedule of classes, sitting in lectures, the predictability of assignments, the campus clubs.  I met good people in university, both in the administration (especially the Accessible Learning Centre, excellent people there) and in the campus clubs, people who welcomed me, accepted me, and liked me for everything that I am.

While university was a challenge, it was also very rewarding, even without the friendships I treasure and cherish.  It got me thinking about what I wanted to do with my life, and has helped me to develop my research, thinking and writing skills to go on to my current studies.  The successes I've had in Disability Studies has confirmed a lot of things about myself and has directed me towards many engaging projects.


I can honestly say that I am a much happier person now than ten years ago, that I am proud with whom I have become.  It's not all the autism diagnosis, no, but it sure played a big part in me coming to understand myself.  By learning more about other autistic people and Autism in general, I now have words to describe my experiences, to explain to others my needs, and to grow in some many ways.  My heart grows light when I consider how my younger child-self would view me; I have grown up to be the type of person I have always wanted to be.

Honestly, how many people can say that?  Are you who you want to be?

The Tony Attwood Apologist

I've been following the events around Tony Attwood for a while, and I just found this post on Tumblr by Janna.  With her permission, I'm posting it here, since I think it says very nicely what I think of the entire situation as well. 

I’ve been at it for a bit now. Still having trouble understanding everything this person is talking about (have I mentioned before that taking Strattera for six months decimated my reading comprehension as well as messing with my typing?) but I’m trying to get through to them.

The post is here, if you want to see. I’m posting as karalianne, as per usual.
For those not up on this situation, a post was made to The Thinking Person’s Guide to Autism blog, by an autistic person (who is very successful by NT standards), who attended a session by Tony Attwood while at an autism conference. During the session, Dr Attwood impersonated autistic people in a fashion that was exaggerated and taken as humorous by the allistics in the audience. Meanwhile, the autistic person was offended by this portrayal.

Dr Attwood was later pointed to the post, and he wrote to the author privately. In this e-mail, he explained humour to her and implied that she doesn’t understand humour because she is autistic.

More to the point, Dr Attwood has been doing these portrayals for several years, and many autistic people have asked him to stop. He obviously has chosen to disregard the opinions and desires of the people he supposedly cares about so much that his entire career has been spent studying them.

There is an autistic person who is posting long “wall of text” comments to the original post (they’re divided into paragraphs, but the paragraphs are really long and use a lot of big words; my current reading abilities don’t like this at all), supporting Dr Attwood’s continued use of impersonation in the face of complaints.
Here are a few of the things I’ve said so far:
My first comment to the thread:

I am writing just a general response about Tony Attwood in general.
He has written a bunch of books. He writes forewords a lot. He’s studied Asperger’s a lot. He has degrees and stuff. 
That is really cool, and it’s okay to like people who have done stuff like that. It’s okay to agree with the things they say and write if they are true for you.
It’s important to remember, though, that even the coolest people in the world say and do really bad things sometimes. Saying or doing bad things doesn’t necessarily make them bad people; a lot of the time, cool people who do bad things are just misinformed or don’t realize that those things are bad.
When cool people do bad things, other people need to tell them that those things are bad. Truly cool people might get upset at first, but after thinking about it they go, “Oh, wait, I get it. I won’t do that anymore, then. I’m sorry I did that bad thing.” Less cool people don’t stop doing the bad things. That doesn’t mean they aren’t still cool, and it doesn’t mean they’re bad people, it just means that they’re still doing bad things even though they’ve been asked not to. It’s okay to still like people who do that, but it’s also okay to stop liking people who do that. It’s also okay to criticize people who do that, because they need to be criticized.
If I am standing on someone’s toes and I don’t mean to be standing on their toes, I AM STILL STANDING ON THEIR TOES. I need to apologize and stop standing on their toes. My intent doesn’t really matter except that it was an accident. If I keep doing it to the same person, over and over again, at some point that person is justified in concluding that I am actually doing it on purpose and that I don’t actually care that standing on their toes hurts them.
This article is posted publicly. Anybody can see it, read it, and reply to it. Tony Attwood is perfectly able to do that here or at Karla’s site, I’m sure.
(Note: I wrote this the way I wrote it because this is about the level of complexity I’m capable of today. I’m not autistic, but ADHD impacts my communication sometimes, too. So I’m not “talking down” to anyone by using simplistic words and sentence structures, I’m writing the way I’m able to think about this right now. Just so everyone knows.)

In response to “not everyone has time to peruse the internet”:

Public figures should always expect to be called out publicly. It’s part of being a public figure. 
In addition, it takes about two seconds to type your name into Google and see what turns up. Once you skip to the third page (getting past all the stuff he’s actually written himself), you start seeing criticisms. I would assume Tony has an assistant who could use some time each day to check for such things, make a list of URL’s, and send them to him, with a short summary of each URL. 
Considering the fact that Tony has been spoken to more than once about this sort of thing and continues to do it AND defends it by saying that other people are okay with it is an indication that private communication will do no good and public callings out are now necessary to make it clear that this sort of behaviour is really Not Okay. 
Like I said, you can still like him. I don’t see why what he says about Asperger syndrome should be given more weight than what people who actually HAVE AS say about it, but that’s me. I don’t see why people who don’t have ADHD should be telling me how to “fix” myself, either. *shrug*

About the e-mail Dr Attwood sent:

1. I can’t actually understand all of this right now, so I might come back later, but I will probably forget to do that. 
2. Attwood has been approached by autistic people in the past and asked not to tell these kinds of stories, because they are offensive to autistic people. 
3. He continues to tell these stories. Ergo, he does not actually care what autistic people want and need. 
4. When responding to someone who has been offended by something you have done or said, talking about their perceptions is a way of putting it all on them. Basically, it is saying “I didn’t mean to offend you; therefore, you should not be offended. Since you are offended, it is obviously your fault that you are offended.” 
5. I know plenty of autistic MEN who are hilarious. My autistic friends are not all women. Nor do I know them all just online. 
6. Intent is not magical in any way. Like I said, if I’m standing on your foot without meaning to, I’m still standing on your foot and that is not okay. I need to apologize, get off your foot, and try not to stand on your foot again. Attwood has not done this.

About the difference between what Dr Attwood is doing and what autistic people themselves do sometimes:

Short note that autistic people poking fun at themselves/their own disorder is VASTLY DIFFERENT from people NOT on the spectrum poking fun at them/autism. 
I don’t like it when people who don’t have ADHD say offhandedly “I’m so ADD today” because IT DOESN’T WORK THAT WAY. I don’t like ti when people who don’t have ADHD make jokes about how I take legalized speed, because THAT’S NOT WHAT I DO WHEN I TAKE MY MEDICATION. I don’t like those memes that are going around right now about trying to fall asleep and Old MacDonald Hey Macarena OR the really old ones about squirrels or bikes (though I grudgingly allow that people who HAVE ADHD have a right to use them if they think they are funny or pertinent or something). 
I still don’t fully understand what the heck you’re talking about for the most part, but I did understand the stuff I just said and I know it pertains to some of what you wrote.

In response to something that was basically “he doesn’t intend to respond, and anyway very few autistic people are statistically going to be at these conferences”:

Regardless of intent. (INTENT DOES NOT MATTER) 
A person who has a particular disorder can say things about their own disorder that it is insulting and inappropriate for people who do not have that disorder to say. 
If I were giving a talk about ADHD, I would talk about positives and negatives and describe my life and the lives of other ADHDers who have given me permission to share their stories. And it would be okay if me doing that made people laugh, because I would certainly play my own stories for laughs if they were funny. However, if a professional who does not have ADHD told funny stories about ADHDers losing their keys every morning or something, I would find that offensive. Someone who doesn’t have ADHD laughing about things that happen to me on a regular basis, that are incredibly frustrating to deal with, is degrading and offensive. 
In addition, doing this - even when no people with the disorder are present - indicates a callous disregard for the people who have the disorder. It also encourages other people to do the same thing. 
Basically, IT DOESN’T MATTER IF SOMEONE IS THERE TO BE OFFENDED, THERE ARE REPERCUSSIONS FOR SUCH BEHAVIOUR THAT WILL AFFECT THEM ANYWAY.

Revisiting Holidays

As I prepare for ASDay and my weekend intensive class, I am reminded that the winter holidays are approaching. I have decided to repost a piece that I collaborated with my mother on in 2010.

Surviving the Holidays with Autism

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.


But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.


Sensory:
You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.


Schedule:
Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.


As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

1) Don't do too much on any one day; usually one event per day is enough.

2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.

3) Keep clothes soft and comfortable.

4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.

5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the table, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)

6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.

7) Make sure that relatives and guests know the kid's needs.

8) Limit the amount of people coming over and in the house at any given time.

9) Have a safe place for your kid to withdraw.

10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.

11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.

12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.

13) If playing music in the background, have calm music and be careful of the volume.

14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.

15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.

16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc




If you have any questions about this list, or you think I've missed something, feel free to ask and comment.




Merry Christmas and Happy Holidays!



- Posted using BlogPress from my iPhone

Happy Thanksgiving

It's Thanksgiving here in Canada, a day where we ignore any references to some guy named Columbus (not our history) and simply give thanks for another harvest and the bounty that the year has brought us.

So what am I thankful for?

Well, I'm thankful for the donations that have come in towards my iPad; it will be a tremendous aid in my studies and I thank the community for their support thus far.

I'm thankful I went to IMFAR this year; not only did I learn a lot, but I got to meet some great friends and we had a fun time.

I'm thankful for technology, that has been able to connect me to people all over the world and allowed me to take classes with more ease than ever before.

I am thankful for the support systems that work, for they are invaluable. There might be much that needs work so that they are the common, not the exception, but I am thankful for when they have been there and able to provide for me and others.

I am thankful for communities and friends who accept me as I am, who embrace me as one of their own, and who welcome me. A lot of these share at least some of the same interests and loves, and it always feels like coming home.

I am thankful for my friends, family, and loved ones, whom provide companionship and support, as I do the same for them.

I am thankful that I am not alone.

Thank you.

Assistive Apps for iPad

[edit:  I also have a page on ChipIn available through this link, if the widget below is not working]

As I'm raising money for my own educational iPad, I thought I should let you know what I'll be using it for and what will be put on it.

First of all, I fully intend my iPad to be an assistive device.  I'll either be taking it to school or using it to test out apps for the Autistic Adult App Project.  As I am in Disability Studies focusing on social change, I hope that I'll be able to use what I learn with my iPad to give back to the greater Autism and disability communities.

Now, I'm planning to install very specific apps on my iPad.  I think that it's fair to let people who are investing in me know what I'm going to do with their donations.

Inspiration Maps: based on Inspiration software that I've been using for the past ten years.  It's a visual brainstorming program that turns a mind-map into an outline.  I can't count all the ways this program has been vital to my essay writing. With this, I can work on essays even away from my computer. (if interested, there is also a free version)

Full Version: $9.99

Blackboard Learn Mobile: this is actually a required app.  A lot of my courses has online content, and my school uses Blackboard systems.  This app thus will allow me to access my course materials anywhere that I have an internet connection.

 Free

Open Word:  a word processor, simple enough.  I picked this one because I'm used to the freeware Open Office, and this app supports .odt, .doc, and .docx formats.  Plus it looks like it can connect to Dropbox, Google Drive, and other networks.  
Always good to have a decent word processor.  

$3.99

 myHomework: homework organizer.  Definitely handy for when I have multiple courses with lots of assignments. 



Free

Miracle Modus: I reviewed this on the Autistic Adult App Project earlier.  This is an app created by an autistic programmer to deal with stress and sensory overload.  I find it quite useful and effective.


Free

EpicWin: one of the first apps I reviewed, and worth every penny.  A to-do list that integrates RPG gaming to give immediate rewards for completing tasks.  I use it to help me remember to do things like take meds, do laundry, and other functioning tasks.  Cause even when I'm away at school, I got to do things like eat, eh. 

$2.99

Talk Assist:  Another of the first apps I reviewed.  This is a text to speech app, for when I'm having difficulty speaking.  Free and easy to use.


Free

Dictionary.com: a dictionary and thesaurus, pretty basic, but meets most of my immediate needs until I can get to my large volumes.



Free

eSleep Lite: I recently reviewed this one on the Autistic Adult App Project. While designed to help people relax to sleep, I find it useful to relieve stress in order to work!  This is one of the better apps I've found out there. 

Free

Wikipedia: While I'd never suggest referencing Wiki as a source on an essay, it's a good place to look up general information about a topic that I'm unfamiliar with.  At least, most of the time, and until I can get to a library.

Free

ICE Standard: It's not assistive or educational software per say, but I think that it's important to have this one.  In short, it's a medical emergency ID card app.  I have one on my iPod, and I've used the notes section to put in autism-related information for first responders.  While I love the medical jewellery I make, I can include all my meds and contact information, which if I don't have to use in an emergency, can be handy if I ever have to talk to a doctor, especially a doctor that doesn't know me.           Free


I haven't decided yet, but I'm looking into an APA and MLA format guide.  As part of the social sciences, Disability Studies uses APA style, but I find it rather difficult and confusing.  Since I can practically cite MLA in my sleep, and my professors have been pretty good so far about it, I use MLA instead.  However, it's good to have style reference guides to double check, for both styles.  The ones that I am looking at right now are between $1.99 and $3.99.

Now, you'll notice that is eleven apps I have planned for my iPad, and that most of them are 1) free or cheap and 2) not necessarily disability-related.  I don't think I need to explain the cheap part; I have a very limited budget, and if there's something out there that suits my needs without (much) adjustment, I'll use it.

As for the disability aspect, well, part of it is the nature of my disabilities; most of which is information decoding and processing.   When I'm in the classroom, I have a number of accommodations set up, mainly note-takers (who usually emailed me their notes, oh hey look, email access on an iPad! Bam! Got my notes to study wherever I go), and I have texts scanned in for me, access to books on tape, and so on.  When the courses are online, the materials are online, and are in a format that automatically meets my accessibility needs.  At least, most of the time.  So the issue then is my own productivity.

Which leads me to the next part; what you need to remember is that I'm a late-diagnosis.  While diagnosed with ADHD in Grade 1, I didn't know about it until Grade 6, and accommodations were whatever my parents could scramble up with my teachers, cause I had no formal IEP until Grade 10 and I was in a private elementary/junior high school with no special needs programs at all.  I didn't feel comfortable using accommodations until at least Grade 12, which is also the year I was diagnosed as autistic.

So I have a strong belief in doing more with less.  I also had something of a crash course in learning what works best with me.  So I'm not about to waste my or anyone else's time and money on things that is not going to work. Now, I know these apps above are the best apps for me, or most like to be the best apps for me.  It's kinda hard to tell when I've never had an iPad before, and it might be that in the future I'll find more wonderful apps.  But from my experiences and research, these are the best. 

And final part.  The iPad itself.  I know I go on about apps and the wonderful things app technology means for disabilities.  However, let's look at the iPad itself.  I know I just said that I never had an iPad, but I've tested out tablets in stores and whenever I could get them away from friends.  To me, tablet computers are exciting in of themselves, because it is the device that makes apps possible.  It is a small, lightweight computer that is portable, (generally) easy to use, conceivably compatible with various systems, and adaptable to meet many needs.   This opens doors for many disabled people, not just autistic people.  And there are so many styles and models to choose from, something almost unheard of in assistive technology until recently.

For me, the iPad means more than just the latest gadget to show off to my friends (ironically, the reason my parents bought my first iPod when all I asked for was an mp3 player).   It is a device that helps me to organize my thoughts, to keep track of my schoolwork, to manage my stress levels, and to help me learn.  It does this in part by the apps it provides, and also by its design.  Yes, there are a lot of tablets out there, a lot of which are cheaper.  However, as I pointed out above, I know what works for me.  When I tested tablets, I found that the iPad was the only one with a big enough screen for me to work the most comfortably, that I could type easier and use the system more fluidly.  To most people, my difficulties with perception and motor skills is unnoticeable, but to me, it is a source of frustration.

Which is why being able to get an iPad means so much to me.  It will allow me an ease of access in the classroom that I never had before.  Each donation towards my iPad makes me wordlessly excited! I want to thank everyone, and I don't know how!!  Every little bit goes towards helping me give back to the communities.

So please, if you haven't already done so, make even a small donation, or help spread the word!  Every little bit helps! And if you have already done so, I thank you immensely. 


.

ChipIn for School iPad

[edit: I also have a page on ChipIn, available though this link, in case the widget below isn't working.] 

I remember back in 2003, when I was first setting out to university, it was suggested that I get both a laptop and a palm pilot.  Remember Palm Pilots?  I vaguely do.  From what I remember, I was to use one as a digital calender/schedule book to keep me on track.  Given the recent developments in technology, I'm not sure whether they're even still made nowadays.

PalmPilot

I was suppose to use a laptop as a glorified typewriter, to take class notes and write essays on.  I wasn't too keen on that, given how bulky, heavy and expensive laptops were (and still kinda are).  My parents and I found a compromise, getting me a Dana from AlphaSmart.

AlphaSmart Dana, now known as NEO

Basically it was a PalmPilot with a full keyboard and a big enough memory that I could type up research, pieces of essays, and some class notes with ease.  It would sync with a computer and transfer a document into, well, any open window.  I had a note taker in class, so I mainly used my Dana for research.  I'd go into the library, find passages of information I needed, then copy it down with references.  It was light-weight enough that I could take it to school regularly in my backpack.  Unfortunately, the battery passed on some time ago.

Now, my needs have changed over the years, as I've gone from being on campus all the time, to being on campus occasionally.  I need something less like a Dana, and more like a laptop, without being as bulky and heavy (cause yes, they are still that) as one.  I need something that I can take to my intensive sessions, whether for two weeks or a weekend, that has the assistive technology of my full computer and iPod, but can do notes and be portable.

People have suggested I get an iPad.   To be honest, I've thought about it, for over a year now.  At IMFAR, I got to see iPads in action.  For the past year, I've browsed through iPad apps and sighed as I wishlisted them.  Every chance I got, I'd test out the display models in stores.  And in long last, I have decided that I should get an iPad.

It's light and portable.  It has full keyboard and word processing capabilities.  It has apps, for functioning, stress relief and communication, plus testing.  It'll be used for school and education purposes only.

The only issue is money.  I'm a low-income student, with a part-time job and two courses.  I could maybe afford the apps that I need for on the iPad, but I can't afford the iPad itself.  So, I've started up a ChipIn.  I'll be grateful for whatever people donate.  Every little bit helps!

My New Store PearlGarden on Etsy!

I'm not very good at advertising and selling myself, skills needed to apply for jobs.  However, I do try my best.

Some time ago, I decided to start wearing a medical ID bracelet.  I looked into services such as MedicAlert, but found that for their services, it was too expensive for someone like me who has a very limited budget.  Plus, being Canadian with a health care system that's becoming networked, I didn't think that I needed all of the services provided.

What I am concerned about is not the information doctors and nurses need once I get to the hospital; that information is available via my health card and medical records.  What I was worried about is information that paramedics might need should I be unable to respond, either through injury or shock.  Things like what medications I'm on, and conditions like asthma and my chronic anemia.

Which means is that what I really need is a bracelet and tag that has any immediate information that paramedics need.  Friends on Twitter pointed me to very lovely stores selling medical bracelets online.

I bought a few bracelets, at least $50 each, as well as tags, and while lovely, I felt uneasy about wearing them all the time.  Some of them are not suitable for day to day activities and broke rather easily.  Not waiting to pay additional fees for something I thought I could fix myself, I decided to do it myself.

Along the way, I discovered a delight in designing and creating my own bracelets. Not only what I made was beautiful, but I also made them to be strong and durable.  And I really wanted to keep making bracelets.  But what would I do with all of them that I had made?

So I decided to open a store on Etsy, and to celebrate, I'm offering 25%!!

click image to go to store

 Take a look, and if you decide to buy something, be sure to use the coupon code FALLOP2012 for 25% off! 

Expanding Spoons

The original Spoon Theory was created by Christine Miserandino to explain living with Lupus to her friends.  Since then, many people have picked up the metaphor and applied it not only to diseases, but to various disabilities as well.  I know many people in the Autism communities who use the metaphor as an expression.  I myself have attempted to merge Spoon Theory with my own metaphors of Batteries, and use the expressions in my regular life, with spoons being used more frequently than batteries 

Lately, I have found myself and my friends being creative with the metaphor. For example, "my spoons are too big for that", "my spoons are too small" and "I don't have the right type of spoon for that".

As my friends and I have discovered, people can have different size spoons and spoons that do different things.  Take a look around a kitchen.  There are measuring spoons, teaspoons, tablespoons, serving spoons, soup spoons, stirring spoons, salad spoons (okay, those are tongs, but they look rather like spoons to me).  There are spoons designed for certain tasks and certain uses, and there are general, all-purpose spoons. 

In the world of spoons, there is a great diversity that can be used to expand the use of Spoon Theory from being a metaphor to being an expression, a key wording to expain why someone is withdrawing or leaving ("I need to get more spoons") or as a short form for why someone cannot currently do something that they might have been able to do before ("I don't have that spoon right now"). 

Spoons are the tools, abilities to access and take our energy (batteries, as I've previously called it) to do things.  Sometimes I've had spoons that are totally not right for the task I'm supposed to do.  Sometimes I have spoons that can't access the energy I know I still have to do something.  Sometimes my spoons are too small for a job.  Sometimes they're too big.  Sometimes I can use what I've got to do things, even if it's not the right spoon, and sometimes I just can't.

My friends say that their spoons are too big if it's tough.  As in, it takes more energy-brain power-ability to do something.   If it's a small spoon job, then it's a pretty easy task, maybe one that can be done without thinking too hard about it.  We joke about each of us having different spoons as our "regular" spoons, some of us using teaspoons, while others use ladles. 

Sometimes I have too many spoons, sometimes I have too many and have left overs at the end of the day.  I wake up each morning never too many spoons I have, because sometimes I don't actually know, like they're hidden and only revealed to me throughout the day.  So I ration spoons carefully, because it might be one of those days where I'm in danger of coming up short in the end.  Because if there's anything that I've learned, it's that I can never totally forget that it costs me to be a part of the world, and that I always could use a few more spoons.

Autism Project Ideas

Originally posted on my tumblr: 

 

Autism project ideas that I have no clue how to start/run

• Autistic mentors network, connecting young Autistic people with older Autistic mentors, a sort of You Are Not Alone, we can get through this together thing to help with self-esteem and mental health issues
• a guide to give to house/room mates of Autistic people.  I find it so exhausting to try and educate each housemate I encounter, and find I forget the little things, like the need to have plates stacked a certain way, my annoyance in wet floors, and sensory issues.  It’s great that there’s materials for Autistic people, but what about the other people in the household? Why do we always have to be the ones to compromise?  Especially when other members are willing to learn about what we need to live comfortable?

For the guide, it’ll be cool if there was something like it, so I could just print it out and hand it to housemates.  So if it already exists, let me know.

As for the network, haven’t heard much about that sort of thing, but I think it might be good to have.  It just seems like something that I don’t have the spoons to do.

An Autistic at IMFAR 2012

I finally got my article done on IMFAR 2012.  Whew!!! 

It is quite long!  Instead of dividing everything up, I did one big article on Storify, because then I could snag the tweets I did throughout the week. 

I'm very sorry it took so long to get this done; I hope it's worth the wait. 

Because the Storify format can cause lag on people's computers, I'm just going to link to it on here. 

An Autistic at IMFAR 2012

 

Crisis with the Help Lines

You know those crisis help phone lines?  The woman's shelter lines, the pregnancy lines, the talk help, kids help lines, and mental health crisis lines?  Those.  It has occurred to me that those help lines are kinda ableist.

Think about it.  They all require people call them over the telephone and speak to them.

In a time when you can get customer service over an internet live chat, where are the help lines for people who are non-verbal, people who communicate better in written or typed word, or who are so into crisis mode that they lose all verbal capabilities?  Or people whom English is not their first language or whom aren't fluent in English?  Or who have sensory problems and have difficulties using a telephone? Or are in a situation where they cannot seek assistance through their caregivers to communicate the crisis?

Also, when in crisis, it can be very hard to verbalize the pain and what going through, even if one does retain verbal capabilities. Failure to address the needs of the non-verbal population means that there are people who are not being supported or have access to community resources and accommodations.  This leads people further into crisis, with no where to turn for help. 

So when someone goes into crisis mode, they also go into survival mode, a state where someone purposely or subconsciously shuts down skills in order to cope.  This is dangerous, because now the person have further difficulty in  accessing community help and services, cannot communicate, and is more vulnerable to further crisis, including escalation into self-harm coping strategies.  The longer in this state, the pain caused by the crisis can lead to extreme measures of self-harm, eventually leading to suicidal behaviour. 

At this stage, there are more than one crisis; the initial crisis and the mental health crisis.  The results of care then become dependent not only on the structure of support for that person, but also the preparation of local mental health services in dealing with complicated crisis situations. 

Now, there are online resources available for mental health crisis, such as the list provided by Boggle, including a Forum and live-chat online services.  However, there needs to be access to non-verbal crisis support across the global, and a connection to local mental health services.  With many service providers, crisis support phone lines already exist, and they maintain a team to respond to calls.  What if there was also a way to text into the crisis line?  What about maintaining a Twitter and/or Facebook account, where it's possible to private message the operator? Monitoring Twitter and Facebook messages can be done while monitoring a phone line.  There is also the option of a Forum, where there can be group support and private messaging options for daily support as well as crisis support. 

Non-verbal accessibility is possible, and is incredibly valuable to a wide population, not just non-verbal Autistic people.  It has the possibility of connecting mental health services to the online communities, to people who cannot otherwise access much needed support.  Yes, it does require making adjustments, getting people to write code, retraining employees, and other costly changes.  But this is an area of need within the disability and mental health communities that is not being adequately met, resulting in the isolation and despair of many.  It also sends out a negative message to people, that their needs are not deemed worth to be addressed, that their crisis, their methods of communication, are not significant. 

In my opinion, it is the obligation of mental health services to develop ways to make their services accessible to all.  Otherwise, they are failing to help the people that they are suppose to support, a failure that can have drastic and fatal results.  Yet, it is possible to correct this, to make crisis and other types of support accessible, if service providers are able to embrace alternative, online and text-based methods of communication.  Then truly they will be able to reach those who need their services.

Still Here

My badge for IMFAR

  
I have most of my report on IMFAR done, I'm just working on the last day.  It's taking a while because all of a sudden I'm having bouts of over-sleeping and insomnia, which is messing with my schedule, including taking meds.

I'm also trying to keep on top of a class that is very heavy on the class participation (arg) and is in seminary format.  Meaning, group work!!!  Group work to look over the readings for the week and then lead the student discussion. 

And I was in charge of the week right after IMFAR and it feels like the attention and focusing parts of my brain are on strike.

Anyways, report will be up soon. 

Tweeting at IMFAR

I'm tweeting at IMFAR! Make sure to follow me @CorinaBecker! I'll also be putting together a summary when I get back and have more easier blogging from my tweets.


- Posted using BlogPress from my iPhone

Where are the autistics? Or why I'm not going blue for autism awareness

This isn't to say that there isn't some good from the world autism awareness day and general autism awareness month. Definitely some good can happen from people being aware and people who usually don't blog about autism to 'come out' about it.

Problem is that there is something called negative awareness, which harmful misinformation and stigma is spread. Contrary to popular belief, intent does no erase harm, nor does it excuse the damage. There is much potential for good, but there is also the potential to spread the harmful attitudes that contribute to ableism, abuse and hate faced by autistic individuals and disabled people. Without acceptance and inclusion, even the most well-meaning awareness can go horribly wrong for the people it's trying to help.

"But Corina, isn't that incentive for you to add your voice to the day/month?" I hear the argument, that I should join in order to present both myself and the autistic community. And to be honest, a few years ago I would agree and eagerly pull together some hopefully inspirational piece on community, or try for some insightful look at my life as an autistic adult. But not anymore. Now I save those words for when I'm actually inspired to write them, when I'm not treating my activism like a school assignment, trying to write something by the deadline.

There are also other reasons why I will not join in. One is that with so many 'voices' during April, it is some times very hard for autistic people to be heard, even during awareness events supposing to be about them!! Yes, there are pockets where a conscious effort is made to follow "nothing about us without us". Yes, I am happy about that, and yes, usually i don't concern myself with how many people I reach. But for this, it's more about the principle of the matter; I shouldn't have to compete in order to be heard.

I refuse to turn my activism into a competition of how loud I am. I also do prefer substance over quality. This is part of why I haven't been updating as often, even though I have a couple of articles waiting in draft. The other reason for my lack of regular updates leads to my next reason for not deliberately being a part of autism awareness month*.

I'm tired. Not tired enough to give up writing, but enough that I have to be careful with how I spend my batteries and spoons. And it's more than just being tired of having to be on top of everything and the feeling that I have to comment on every little drama in the communities (seriously, I got out of a lot of fandom communities due to drama; it's just a waste of energy sometimes).

I'm really busy. It sounds like an excuse, but it's the truth. I write a lot on autism, because I am Autistic, but I'm also ADHD and Learning Disabled. I am in school, which means reading, writing assignments and essays, and a lot of sleepless nights. On top of that, I work retail in a position that uses a lot of my weaknesses instead of my strengths. Some how, between all that I squeeze in a modest social life and my household chores. Between all THAT, I squeeze in self-care, both physically and mentally. I sometimes have to remind myself that this is all a part of being a responsible adult and not to mentally beat myself up for 'taking a break' and not being productive. Taking care of myself means letting myself enjoy things, like playing a game, watching a movie, reading a book, painting, writing novels, drawing comics, and knitting.

Sometimes, I have to make a choice between writing activism or taking care of myself. This is actually a lesson I had to work with therapists to get, to be 'selfish' and do what's right for me instead of burning out. This also means choosing which autism events I participate instead of jumping at every event that I hear about. I'd much rather focus on events that I know will be building positive awareness and promoting acceptance and inclusion, not to mention pride.

So, to wrap it all up, I refuse to turn my activism into an assignment, competition, or burn myself out, especially when 'autism awareness' is what i do all year long, not just one month or day. And that is why I am not 'going blue' this month.





*other than the fact that I'm Canadian and autism awareness month is a US thing, primarily. I've never really been one to let a border get in my way when I have the means to do something I want. Never mind... apparently Autism Awareness Day has come to Canada, as a bunch of buildings in Toronto are being lit up in blue.  Nicely enough, I see that proceeds to some of the events go to a few Autism organizations that I personally know to be pro-neurodiversity.  

Preparing for IMFAR 2012

I know a few people who attend IMFAR each year, or at least try to.  If I remember correctly, the ladies at The Thinking Person's Guide to Autism will be there this year.  I'm also trying to get there this year.  Most of the time, I can't go to conferences and events like this, due to a number of things.

First is skills, stuff like planning.  Yeah, I'm okay when it's places I've been before, like the anime convention I've been going to for about ten years straight.  With a bit of practice, I can transfer the skills I've learned from there to other situations, like going onto the campus of my school, combined with what I've learned over the years in school.  But a lot of the time, these events take place out of my comfort zone, in areas where I have not clue how to operate or navigate, due to multiple things, like distance, lack of information and support, leading to sheer fear.

Second factor is money.  I'm on ODSP, aka social assistance, and I work part-time.  I just don't have the money for transportation, rooming, food, and registration for these things.  Especially when a lot of them take place over the border.  This leads back to the first factor, but currency exchange is a factor as well.  And again, I just don't have the money, not to do many of them.

This year IMFAR is being held in Toronto, which is only a few hours drive away, and in an area that I'm growing familiar with.  I decided not to let this chance pass me by to take a look at the research and meet some of the people I converse with online.  It comes at a good time too, because I was considering taking a break from my yearly anime convention, and this gives me an extra reason for my break.

Problem is the second factor.  The costs involved with IMFAR is more than a weekend anime convention; registration is higher and it lasts longer, meaning more lengthy stays at hotels and car rental (if applicable).  However, this is not enough to deter my decision.  At the same time, I realize that my own budget is not enough to cover all the costs, especially given that I'm also in school and have tuition to pay.

These are, as follows (tax included):
Student Non-member Registration $225 USD
Transportation by train $151.42 CAD
my share of Hotel $449.74 CAD
= ~$826.16 CAD*

That's not including food, and miscellaneous costs, like the $6 on the subway.  Given that IMFAR is being held in downtown Toronto, I can fully expect between $20-40 a day for food, unless I bring noodle cups along (which aren't very nutritious).  I never expect a venue like this to provide food, or if they do, food that I can actually eat.

Either way, IMFAR pretty much costs more than my month's support cheque, rent and all.  Alone, this would be fairly difficult for me to pay for, and I consider myself pretty privileged.  I'm wondering how anyone of the "traditionally underrepresented groups, including those from ethnic minority groups, and those with disabilities" is suppose to attend. 

 I cannot apply for an Autism Science Foundation travel grant, because I am not a US citizen, nor am I a student in autism-related graduate studies/studying in the US.  I also do not want to burden the costs of this on my friends and family; as much as I appreciate their generosity, I know that they have their own costs and needs that should take precedent over my wants.  Therefore, I turn to the internet communities. 

I am opening up art commissions and donations.   You can see examples of my artwork at my deviantArt account . 

Commissions will be for digital art only. For simple art (one character or subject), line art is $5, full colour is $10.  If you want something more complex, contact me and we can work on details. 

When you submit a commission, please include the character or subject you want in the PayPal comments box, or else your contact information. 

If you wish to just send a donation, just leave the comments box blank.  Thank You.

Click on the image to donate or request a commission!  All proceeds goes towards IMFAR costs.  If there's any left over, it's going towards tuition!

*rough estimate, given the exchange rate

The Passing of Dr Jeannette Holden

I just found out that Jeannette Holden passed away yesterday morning.  She did a lot in the Autism communities, including working on genetic research.  Of course, some of what she worked with I haven't made up my mind about, but I worked with her on the Board for the Kingston Foundation for Autism.  She always treated me with respect, and valued my input.  It was she that wanted me to sit on the Board as an Autistic voice regarding the Board's activities. 

At the last meeting that we had, she had an idea to create an art gallery featuring local Autistic artists.  She asked that I be a part of the project, given that's more or less what I did when she met me at Kerry's Place Autism Services, and my own talents as an artist.  I hope that I can continue the project, knowing that the gallery will do much to increase Autism awareness and acceptance in the community, and that would be something she would want. 

The following is the email announcement from Autism Ontario

Dear friends of Autism Ontario,

If you have not already heard the sad news about the passing of Dr. Jeanette Holden, please see the announcement below from her colleagues at Queen's University. Memories may be shared at the link below or you can click here (http://www.asdcarc.com/index.php/publisher/articleview/frmArticleID/477/staticId/1511/ ).

Jeanette was a strong supporter of Autism Ontario and was actively involved in our organization as a Chapter member, a member of our Research Committee and also served for many years on Autism Ontario's Board of Directors. In 2003 Autism Ontario also honoured Jeanette by creating the "Jeanette Holden Post-Secondary Entrance Scholarship for Siblings of Individuals with ASD." Over 60 siblings in Ontario have received a scholarship in her name.

She was a staunch supporter of families raising children and adults with ASD and brought that message to government leaders, autism committees, research forums, parent meetings, ASD conferences, and to anyone with whom she came in contact. She was a regular contributor to our magazine, Autism Matters, and joined the Ontario Partnership for Adults with Autism and Aspergers (OPAAA) in creating the "Forgotten" paper on the needs of adults with ASD.

Our hearts go out to Jeanette's family, many friends and colleagues whose lives have been impacted by her and her vision of "acceptance and opportunities for all people with ASD". She will be sorely missed.

Marg

Margaret Spoelstra
Executive Director

Ableism at the Children's Hospital

What a way to start the new year, I came across this on tumblr, and feel the need to share this as an example of ableism that exists in the world.

As seen in this post by Amelia's parents, doctors at the Nephrology department at Children’s Hospital of Philadelphia are refusing to proceed in a kidney transplant because Amelia has Wolf-Hirschhorn Syndrome, an intellectual and developmental disability. 


I don't think I have the words to express the outrage I feel regarding this.  This should not be allowed to continue.  I'm planning to try and follow the events regarding this, and give as much support as I can.  Hopefully Amelia will be able to get the transplant, and doctors will get the message that treating disabled people like this in not appropriate.

Edit:  There is now a petition to sign to allow Amelia to have a life-saving transplant.  Please sign!!