The Value of Revealing My Deficits

I attended the Knowbility Contest “Pit Rally” last Thursday to ask questions about the contest to the judges.

(If you haven’t seen my previous posts about the Knowbility Contest to improve website accessbility for non-profit organizations that I have entered my website in, please look at them. (I haven’t yet figured out a better way to reference them, but its on my list for things to cognitive challenges to learn about how to address!))

Several others from the accessibility technology community were there.

I got into a conversation with a woman named Glenda Sims who currently works for a company called Deque Systems.
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New Learning and Website Design

I have written about the contest (the Open Air Rally) that I am participating in through Knowbility to make my website accessible.

We are in the final two weeks of the competition.  Its very exciting.

I had a great meeting with my talented and knowledgeable development team Team AxIS from Cognitive Interactive with my team leader Antonia and the lead developer Krishna and with my esteemed team adviser Joseph O’Connor on Wednesday night last week.
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The Gift of New Learning

I have had an incredible week of ups and downs.

I am going to choose to focus on writing about one of the many ups and what I have learned and gained this week.

Simply amazing!

My son turns 6 next week, and I am just awestruck by that fact.

All the years that we waited for him to come to us, and now he is turning 6!

And its just fascinating to watch his brain develop and his cognition develop.
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Happy Thanksgiving

I started writing more about automaticity last week.  But, I am not ready to post it, yet.

So my post today is Happy Thanksgiving!

I love Thanksgiving.

I love the food and the time to enjoy a good meal together with family and friends.

This year, we are going out for Thanksgiving lunch.

I plan to cook pumpkin pie later in the weekend.

I was reminded about my post last year about Thanksgiving when I looked for my pumpkin pie recipe.

There was so much going on last year for me that I forgot to remember to look for the easy pumpkin pie recipe that I make.

This year, I went straight to my recipe book and found the easy pumpkin pie recipe with ginger snap crust.

Yahoo!

Its been a tough year, but I am doing much better now.

And, as far as Thanksgiving goes right now, it is all good!

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Automaticity Part 1

Last week, I wrote my first draft blog post about a term that I have learned called Automaticity.

I wanted to write about Automaticity because I knew that I was expereincing a huge increase in it, and that it was automaticity that was allowing me to do much more than my “previous normal” would allow.

I had titled the post from the week before “I did it!” because I was so amazed that I had been able to do so much and knew it was because my brain was changing and allowing what I previously could not get done in a given time period.
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Automaticity Part 2

I introduced the word Automaticity in my last post.

According to Wikipedia, learning, repetition and practice eventually allow the brain the ability to automatically respond.   An automatic response means that the mind is not trying to figure out the how to do it part (any more) of doing a task.   The how to do it part becomes automatic.  The mind just responds or acts out of habit.

You may not have even known that there is a procedural part and an action part of doing tasks. That is because by the time we are adults, most of the how to do it part is automatic.   When who to do something becomes automatic, its called procedural memory. When I had my brain injury, I learned that one of the connections that I had lost was procedural memory for a lot of everyday tasks.   I have had to relearn a lot of procedural memory in order to do daily tasks.
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I did it!

On Monday when I walked, I realized how glad I was that I had developed some awareness last week about my vision and integration, how my brain is changing right now and how to help my brain change during this transition through my vision exercises and walking.

And in reflecting about my increased awareness, I realized that I had more challenges on my plate this week then had even recognized that I had the week before.

It wasn’t just that I had more tasks to take on as a daughter, but also I needed to figure out how to increase my communication with my siblings and brother and sister-in-law in our collective tasks to help each other work together to help my father.
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Integration, Vision and Neuroplasticity

A dear friend from Washington DC who knew about my setback this summer called last weekend to see how I was doing and offer her support.  She left a kind and supportive message on my voicemail.

While walking that next day, I wondered how to describe concisely how I was doing when I got back to her.  In many ways I am better, my functionality is very improved and I feel well enough that I have begun the daunting task of seeing the doctors that I was not well enough to see this summer for followups.

In other ways, I am still struggling after the setback.
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A Good Doctor

I have begun seeing the Doctors that I wasn’t able to see this summer as a result of my medical setback.

This was a daunting task before this summer. I have so many doctors that help me with my health after brain injury and I have a number of doctors for my general health.   I have had to find new doctors after moving to Austin, and I am still getting my team in place.

During the summer, I had to concentrate my energy on getting back my health and functionality that I lost as a result of my dentist not understanding how fitting my mouthpiece might (would ?) effect someone like me who manages persistent symptoms after brain injury.

I prioritized well over the summer.   And I am successfully better and much more functional.

As I think about it, I am actually very lucky that my medical setback did not last longer than it did.
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New and Better Website Coming!

Friday I got signed up for the Open Air Rally at Knowbility an organization here in Austin that promotes accessible design.

In the next couple of months, I will work with a group of experts on accessibility issues including web designers, programmers and marketers to improve my website.   I will be matched with a team of experts who will volunteer their time to help me develop my message and improve the accessibility of my website so that people with all kinds of disabilities as well as people with out disabilities can read it better.

At the end of the process, there will be a competition to see who’s website is the best with respect to a set list of accessibility criteria.

I am really excited for 3 reasons:

1) I know that I wouldn’t have been able to read my current website until years after my injury.  I have visual and cognitive and processing deficits.   I want others with my issues, and with other issues, to be able to read my website, if they want to.

2) One of the people who founded the Open Air Rally with Sharron Rush at Knowbility was Dr John Slatin.  Dr Slatin led what was then-called The Office of Technology and Learning at the University of Texas.   Dr Slatin found a place in his office for me after I finished speech and language therapy rehabilitation at St David’s Hospital.   He was a tremendous mentor of mine.  He provided the vision and direction for my post-injury speaking engagements.  He helped me understand the need for more and better information on cognitive deficits from his point of view as someone interested in accessibility, learning and technology.

My first post-injury speech was to John’s undergraduate class on improving the accessibility of the web.    I spoke about my cognitive deficits at that time, and the difficulties I had with using the computer and what had helped.  That speech was the first of many on what my cognitive issues were, how they were changing and how the computer could help me.   After the speech, John told me that he could see my economics training in my descriptions of my brain.   It made me so happy to know that my economics was still in my brain somewhere and that I could continue to develop that skill now that I knew it was there!  I wanted so desperately to be reconnected with my training in economics which I loved.

When I knew John, he had had to learn to compensate for adult-onset blindness and he worked hard to increase accessibility for UT students.   Sadly John passed away from Leukemia after we left Austin for Washington, DC.

For me, connecting with Knowbility and entering the Open Air Rally are steps in honoring how important John’s mentoring has been in my life.   I know it would mean alot to John, if he were still alive and could see how things he began years ago are helping me now, and how the work will help others with cognitive and visual disabilities.

3) The mission for my blog has evolved and changed since I started writing it over a year ago.    My original idea was to develop a community, but its primary focus has evolved to be mostly the blog.   Because the mission has changed, the current website is not the best for my mission.  In technical terms, the User Experience (UX) design is bad for everyone. Bad UX design is frustrating and bad for people without disabilities, and can be exponentially more frustrating for people with disabilities.   I am glad we can finally take steps to ameliorate the frustration that my current website currently creates.   We had to start somewhere, and I am ready to take the next step, with such dedicated help.

And lastly, I am hoping I will learn a lot compensatory strategies for my computer use in the process of working on improving my website with people who are knowledgeable about accessibility issues.

Here’s the link about the Open Air Competition through Knowbility:

http://www.knowbility.org/v/open-air/

 

 

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