Thursday, May 27, 2010

Communication

Last week I received a note asking for me to talk about the way Emily communicates with us.

Emily has always been expressive with her face and eyes, however she cannot voluntarily use her voice. There are times when she is very relaxed and sounds come out. She is able to laugh and cry, but to articulate words is just way beyond what her brain-to-muscle connection will allow.

In the past we have tried many different methods of communication. She has a number of switches that can attach to things for her to activate. She has also tried communication with a computer. However due to her inability to control her muscles she cannot with any regularity connect and control anything by herself for more than a moment or two.

IMG_1725aEmily talking to her friends at her surprise party last week.

Last week a lady from the University of Washington came to visit us. She brought a computer with her that had a program on it called Eye Gaze. The program focuses a camera at Emily’s eye and watches what she looks at.

To make the program work Emily had to follow a small red dot on the computer screen to calibrate her eye movements. She followed directions wonderfully and the computer program was calibrated fairly easy. Once done we were able to open up a different program so that Emily could click on things just with her eye gaze.

She was really doing it! We asked her questions which she could answer by clicking on one of the multiple choices. And the computer could speak out the answer. I think Emily was quite taken with this program as she continued to play with it and not lose interest as she normally does.

One thing that really impressed me was Emily chose to play a joke on us. We were asking her questions and she clicked on an answer that was not correct but was very funny. We all laughed, including Emily. She played a joke on us! I should have written down what she said because for the life of me I can’t remember what it was now.

In September we are going to borrow the Eye Gaze equipment for 2 weeks and her Speech and Occupational Therapist will help us work with her on it. If we can get a good video of her using this equipment then we can submit it to the insurance for approval for purchase.

Now should I tell you the price of the equipment? Well, you can probably guess, its 10-20x the cost of a laptop. Is it worth it? That is debatable. Most equipment for medical or developmental issues is VERY expensive for what it is, and most people who have children with special needs can’t afford the stuff. Makes me wonder who they sell it all to???

Tuesday, May 4, 2010

Summer’s Just Around the Corner

Ok, wishful thinking.  Yesterday it was very windy and cold.

IMG_1408a

Today was cloudy, cool, and  a little windy again.

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And while this weather creates nice pictures I can’t wait for the sun.  I’m aching for it. 

Emily has been sick the last couple of weeks.  Everything from a head cold to constant movement from her neurological problems, and the forever hip pain.  I get very sad when I can’t do anything for her when she is in pain.  I hate seeing her like that.  She has a ton of pain medicine but sometimes it just doesn’t work.

IMG_1338a Emily and her friends from school watching a movie.

Even though Emily’s been ill it seems she is communicating with us a little bit more.  Recently she has decided she wants :

1. a surprise party

2. a cell phone so she can text people

The surprise party is already in the planning stages.  We’ve invited her friends from school who come to visit her each week.  I think I’m going to buy that dancing game for the Wii.  Emily would probably get a kick out of playing that. 

The cell phone request might have to wait till Christmas.  We have to convince Dad that she needs to text people.  You see, Mom and Dad don’t text anyone.  We aren’t inclined….  Jered said he would text Emily if she got a phone.  Her nurse also said she would text her.  So even though Emily won’t be able to use her phone by herself (who says that’s a bad thing?) I’m sure her phone will be used.  She can always call Grandma and Dad and talk to them (they talk to her while she listens and breathes loud).

So summer is almost here and its cold outside.  Well, at least I have my sewing area to keep me busy, and my nice new window to look out while I’m warm and busy inside.

Thanks for listening ~