Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi, I did manage to hunt down a recent picture, and posted it to the site. I'll have to hunt up a picture of me and post it. Louis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 > > > This guy, Bob, was accused of giving parents false hope that their > > child could do as well as he. > > > Merely by existing? Hi, Yes, merely by existing and telling them that he existed. His load was just as hard as yours and mine, and he was such a nice guy. The other thing was he was pretty fascinating to the researchers who knew about him. The last email I got from him (maybe 4 years ago) he was trying to decide if he would take an invitation from doctors at the Salk institute in La Jolla to put him under a microscope and see how he ticked. As I said, he was studying medicine himself and was not stupid, he didn't know if he wanted to be their guinea pig. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 , you have lovely eyes! > > Hi, > > I did manage to hunt down a recent picture, and posted it to the site. > > > > > I'll have to hunt up a picture of me and post it. > > Louis > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 In a message dated 6/30/2003 3:49:40 AM Eastern Daylight Time, amanda@... writes: > I've given up entirely on the idea, mainly because it was only useful to > point me to certain information about possible internal physical > anomalies. And because it was so difficult to even bother with people > telling me all the time, " You're too high functioning, " and even > accusing me of ability to do things I could not do. There was even a > fight on the list (provoked partly by my presence) over whether people > saying their children had the " mild " form were just lording it over > people whose children had the " severe " form. It was ridiculous -- that > particular syndrome *has* two (possibly three) forms, and that's what > they're *called*. > > > flashback to a couple of months ago after being tossed off RettNet because of my higher functioning daughter and my positive mutation number. it was positively insulting to them. and yet i don't know how i'll manage from one day to the next, as i know every thing i do will effect mine and Nicollette's future at some point. and many times i feel it is only a matter of time when both me and Nicollette will be under State's care. no one is really helping me become or stay independant, and they always seem to question whether someone in my condition can properly care for someone in Nicollette's condition. hopefully you won't see us in the news sometime as i try to fight peioples far trying to live life on our own, but then a movement disordered nonverbal autistic is always being questioned on whether i can handle caring for Nicollette in her delicate condition on my own. but she is always clean and well cared for something that seems to always shock people. although our socks don't always match, but they are always clean, yes. also we do not leave our home much, no. if that is a real problem, i know not. Juli, ASD, mother to Nicollette, Rett Syndrome with autism Quote Link to comment Share on other sites More sharing options...
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