An email

February 11, 2014

Steven,

 
It’s through tears that I’m trying to send this email! I feel such overwhelming happiness and joy that I stumbled across a YouTube video featuring you! I’m a mom, a desperate mom, to find a way for my son to communicate!  For the most part, I’m the only one who can decipher what he needs/wants.  However, everyday I pick him up from school the teacher gives me the he’s “fussy” report. It makes me so angry that his inability to speak automatically means he’s not cognitively aware!! Seeing your videos has given me so much hope!!!!! 
 
Nathan is my 4 year old son who was born premature at 27 weeks, born weighing only 1lb 9oz.  He is a cutie!!! I’m not only saying that because I’m his mother 😉 Such a long medical history but bottom line is that he has PVL and now diagnosed with spastic quadriplegic cerebral palsy and cortical visual impairment.  I look into Nathan’s eyes and I see so much! We have a smile/no smile system to communicate.  He screams, I ask a series of “are you hungry?  (pause) “do you want a new toy? (pause) etc. until I get a smile. Then I go into a new series of questions, “do you want your ipad? (Pause) “guitar” (pause) etc….This system works for us but we’ve got to be able to get more out of him than what I prompt. We’ve tried the Dynavox with eye gaze but his vision is so iffy and he has esotropia in his left eye which throws off the sensor.  The iPad and Big Mac switch just won’t work either. Recently, I’ve discovered while playing with flash cards on the ipad how much he understands!!! The flash card app is activated by a simple touch of the screen to get the next flash card.  He listens to me when I tell him to use his hands he tries so hard to swipe his hands across the screen (really hard for him to do), then I tell him to use his nose and can bring his head down to use his nose.  He alternates as I tell him to change. 
 
Gosh!!! I’m boring you to death!!! All this to say…..
 
I might be asking for too much but my question is, “How?!” How did you communicate before you knew how to spell? I know everyone is different but I just need know!  Both of his speech therapists have not been able to come up with anything.  I feel like I just want to sit and listen to your entire life story!  I can’t begin to express how much hope you’ve given me! 
 
Aydee Deaton
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