Posted on 03/13/2005 11:02:31 PM PST by BykrBayb
Ya know my son uses eye gaze and gestures when not up in his chair with his communication book and voice board/single switch head tap scanned messages written by him the voice of an old school teacher who updates it four times a year.
Anyhow can you imagine how frustrating all this is. KNOWING we a non verbal communication set up with my son and can carry on just fine.
I wish I was closer in earlier times I would have got to Terri and with her ability made up a Yes and No and pic symbol copy of my son's book in what ever size needed to establish some communication skills for her.
We have had this system in place for 25yrs and Stanford University helped us expand it.
Very Frustrating seeing the obvious with Terri.
Some days when KV is to tired/ill to turn his head right for yes and left for no I say ok for yes look at the ceiling for no look at the window. Like do you want this sation on tv or another one because the human clicker (me) is getting tired of clicking around.
He use to have his own clicker head switch but he would accidently lean on it and tick himself off turning the channel unintentionally.
God there is so much that girl has not had. Basics people basics.
And when she does get a new chair if she lives please get her a decent seating system like a Pin Dot and a Quickie frame top of the line. If she had a decent seating system she would have more control over head movement at the very least and could use a head switch array for many things.
So frustrating seeing someone go without basics in this country.
bttt
you're a saint. I hope you communicate frequently with the schindlers.
No saint I have a conciense and King Vanity has always been a guy that won't leave it alone untill the job is done. I prayed when he was stillborn and told God Iwould do what ever it takes just give me my boy.
He took me up on it.
BTW Check out this article. It is about kids getting G tubes.
My take is that some GI problems on miracle babies are unforseen physical developmental problems.
Anyone can get a g tube to help except Terri.
Parents struggle with toddlers who won't eat
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