Saturday, July 27, 2013

Goodbye Marty!

Today we dropped Marty the brailler at the UPS store to send him on his way to the 6th and final child who will get to test out Marty for a few weeks.  You can read about this child at the bottom of this page:
 http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

Clay took Marty to summer camp at his elementary school the past few weeks where his braille teacher met him for a few sessions of braille practice. It was great having the SMARTbrailler be part of this.  In just a few weeks Clay has really adjusted to having a brailler with audio feedback. It will be difficult to give that up and go back to the old style non-verbal brailler in September.  The new brailler has really encouraged Clay to communicate -- he wrote my brother a birthday card, and he wrote me notes on his activities one day that I was out of town.  (Roasting marshmallows in July, Clay?!) It will also be difficult for me to not have Marty around, as I have been using the brailler for my course,  Introduction to Braille.   It's been great to have something everyone in the family can use.

Yesterday Clay had a few friends over to see what he has been doing in braille.  He showed them some non-contracted letters and they each enjoyed seeing him spell out their names.  His buddy Nick has been trying to figure out how he could learn enough braille to write Clay notes!  Here is a short video of Clay giving a demonstration.  (My video skills are about as good as my braille skills, so forgive me!)  I think a great feature of this brailler is the pre-loaded app that gives letter and word quizzes.  They encourage independent use of the brailler, and with the cheering voices, they are also fun.  They are perfect for children learning to read and spell, exactly right for a child Clay's age.

video


We will post again once the contest to win Marty goes live in September.  
 
If you want to learn more about this tool, it can be found here: http://www.perkins.org/smartbrailler/

Saturday, July 20, 2013

Inspiring Role Model

If you live in the Washington area you may have seen this article in the Post Magazine a few weeks ago.  If you haven't seen it, it is a wonderful story and worth your time to read it.  http://www.washingtonpost.com/lifestyle/magazine/bodybuilder-pat-leahys-lack-of-sight-doesnt-affect-his-vision/2013/06/05/c9040f42-b9bb-11e2-92f3-f291801936b8_story.html
After reading the story I thought this was just the type of person to be a role model for Clay.  Fortunately the Post put me in touch with Pat, and he agreed to spend an afternoon with all of us recently.  We joined him and his guide dog for lunch, and then a tour of the gym where he works out.  It was a great afternoon for us all. Pat is funny, kind, and inspiring.  He uses technology more than anyone I know and he told us about some great iphone apps -- including one that identifies colors (useful for getting dressed), and one that can tell the denomination of money (useful for not getting ripped off!).  Pat spoke easily with Clay and Grace -- probably because he has a niece and nephew almost the same ages.  He taught us a bit about guide dogs, and Clay was happy to meet a dog who has a purpose other than jumping on him (unlike our terrier Pearl).  He showed Clay which machines he works out on, and Clay was in awe of the sled that Pat pulls across the gym with heavy weights riding on it.  Clay loved the rope machine that simulates the moves necessary to pull up as if scaling a wall.   Pat works full time, but is also working on a documentary that focuses on getting children with disabilities to use exercise as a way to strengthen themselves physically and mentally.  I overheard Clay telling his camp counselors this week about Pat. I also heard Clay saying "feel my muscles...I've been working out in a gym!." Here are a few photos from our visit with Pat.

 

Wednesday, July 10, 2013

MRI Update

On Friday, Clay had his 4th MRI since starting this clinical trial in the Fall.  Yesterday the three of us went downtown for Clay's monthly appointment and to review the results.  We pulled up the scans from October 2012 and from Friday, so JD could see the changes in one clear comparison. They are truly amazing, and a beautiful thing to see. No white spots (indicating tumor spread) no white enhancement (indicating tumor cell activation) no bulging tumor crowding out brain and fluid.  More black (fluid). More space -- literally, in Clay's brain; and figuratively -- for us all to breathe.  After seeing the smile on his face, Clay's doctor said to me, "This is why I get out of bed in the morning."  Amen to that.


Sunday, July 7, 2013

"Marty" is now a baritone?

Clay continues to enjoy working with Marty the SMART brailler.  All visitors get a preview and it is
funny to see how everyone enjoys typing out their name or some funny sentence.  (At left is Clay showing the brailler to his K teacher.)  It must be the spy-like code of typing in braille that keeps everyone interested.  As I continue with the course "Introduction to Braille" that I am taking, I learn new things that help me understand the braille code and how the dots make "sense."  For example, the first 10 letters of the alphabet in braille (a-j) are the same as the next 10 letters (i.e., a is the same as k), minus a dot in the 3rd cell.  The next 5 letters are the same as the last 10 corresponding letters, minus another dot in the 6th cell.  Of course, knowing this does not make it any easier to remember the letters, or to read them using your hands!  Clay helped me with my last lesson, "Using a Stylus and Slate."  Knowing how to use a stylus and a slate is useful for taking notes or for when there is no brailler around.  Here is the amazing thing--you must type the "mirror image" of the braille letter when using a slate & stylus, because after you create your note you flip it around to read it.  So once you have memorized the letter to use a braillewriter, you must "flip" it to use a slate.  Are you still with me?  I would make a terrible spy... 

Tonight when I was cooking dinner, Clay brought over Marty and put it on the stool he usually stands on when he helps me cook.  He sat on the floor at my feet and got to work using a few new features we discovered about the SMART brailler.  First, we changed MARTYs voice.  Trying out the different voices drove our dog Pearl crazy. There are two female voices and one male voice (Ryan).  We settled on Ryan.  Then, we discovered an "app" program for quizzing the braille user on letters and words.  This was much more fun for Clay to do than to have me standing there telling him what to type.  And, he was very pleased with the "good work" response after each correct answer and then at the end the cheering that came with his 100% score.  This is a great tool for teaching him to spell and braille at the same time.




Clay has camp at his elementary school for the next two weeks, and he will bring along MARTY for his braille lessons.  Then the brailler will be off to the sixth, and final child in the testing program. 

 http://www.wonderbaby.org/articles/backpacking-smart-brailler-event