Great Expectations (Rett Educators Network Presentation)

Great expectations

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Starfish Awareness Month

If you work in this field long enough Down Syndrome Awareness month starts being about Cory, Sean, Christian, David and Ricky.  Rett Syndrome Awareness Month becomes thoughts about Kelly, Jen and Becca.  AAC Awareness Month is about every kid who you ever helped say yes, no, help or "I love you!" for the first time with a "talker".  And that is just October.

November brings Epilepsy Awareness Month and thoughts of every child who you've sat with, holding their hand and reassuring them, while you watched the clock and waited for the seizure to end.  Last month was Mitochondrial Disease Awareness Month and my thoughts were on Astrid, Ingrid and Sarah.  March may mean spring to some but it is both Cerebral Palsy Awareness Month and Developmental Disabilities Awareness Month.  Students with CP and Developmental Disabilities have made up the preponderance of my caseload for 15 years.  And I have loved every single one of them.

I have walked, rode, crafted, rocked, danced and quilted for so many causes I can't begin to remember them all.  Not to mention all of the raffle tickets, candy, cookies, calendars and gift wrap I have bought.  Sometimes it all seems like it can't possibly make a difference.

I know it is sappy but that is when my mind always goes back to the Starfish Story.  You know the one, with the little child tossing the drying starfish back in the ocean when the old cynic says it isn't going to do any good.  And the child says, "It makes a difference to this one."

The thing is my students aren't starfish.  They are only helpless if we teach them to be helpless.  My job isn't to toss them back in the water.  My job is to teach them communication, independence and self-advocacy.  My job is to keep them from being beached in the first place and to teach them how to make sure they stay in the water where they belong.

So I'm going to fight for more than awareness and for more than cures.  I am going to fight for all my students to be able to become who they are - fully and without compromise.  Are you with me?

Switch Adapted Fiber Optic Lamp

A couple of years ago our I received a Starlight Fiber Optic Lamp through a grant.  This wonderful sensory device has many features including a spinning bouquet of fiber optic lights, sound sensitive LED lights that glow through the fibers and soothing ambient sound effects.  Students loved watching, touching and listening to the lamp.

In the back of my mind I have been intending to adapt it to be switch controlled for a while, but with so many knobs and buttons a simple battery interrupter would not work.  So when I finally found a few free hours I broke out the toolbox and soldering iron.

I knew I wanted to switch adapt the sound effects button, which would allow even students with CVI and/or low vision to use the lamp with a switch.  If I did it correctly pressing an attached external ability switch would allow my students to scan through the sounds of the sea, crickets in a field, an organ playing and a few others.

Once the black chassis was unscrewed and taken apart several small tact switches were located inside.  Luckily they were labelled and it was easy to pop off the one marked "audio".  It took a few tries to determine which two of the four places where the tact switches were attached were the where the new switch port should be soldered.  Once that was done I soldered the other ends of the wire to a 1/8" female switch port.  In this process my soldering iron broke and I replaced it, meaning everything sat in a box for about a week.  Since so much time had passed remembering how to put everything back in the chassis was tricky.  Next time I will snap photos of every step of the process, just in case.  Finally we tried it out, it worked perfectly and has been in heavy rotation during our brief daily independent leisure periods. 

First Dynamic Display AAC Device in India

Avaz is a new dynamic display communication device in India.  It is a fully featured speech generating device which works both as a text and/or a symbol driven device.  It uses the SymbolStix icon set and has many options for set up.  It is accessible via mouse, touchscreen, switch scanning and mouse emulators.  Surprisingly the device is in English only, although you can record speech in any language if need be.  The website does not list a price but states the Avaz is 5% the cost of a PRC, Tobii or Dynavox.  They also have a program of volunteers and sponsors who can sponsor a device for a child in need.  (Wouldn't it be great of the companies in the US did that?  Actively pursued sponsors for individuals who didn't have any other funding?)

Will you help us?

We were funded! Hurray!