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Post by Jackie on May 4, 2011 9:05:22 GMT -5
If any of you have met Rachel Simon or read her RIDING THE BUS WITH MY SISTER, you might want to know she has another new book out www.rachelsimon.com/the-story-of-beautiful-girl/THE STORY OF BEAUTIFUL GIRL. You can go there or to Amazon and read a synopsis but it is about two people with disabilities in an institution that fall in love.
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Post by kg91207 on May 10, 2011 13:12:15 GMT -5
oh awesome. I loved that first book. I'll have to check this one out.
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Post by Jackie on May 23, 2011 9:11:16 GMT -5
Almost through with this book...enjoying it. It is very interesting to me because it deals with the deinstitutionalization issues back in the 70s. Rachel (the author) has confirmed something I sensed when I was reading...that there was a character based on Geraldo Rivera who did the 1972 Willowbrook expose called The Unforgotten that really got the ball rolling. She told me quite a bit about it in an email including that she had sent a signed copy to him. Because of all that when Em was born 8 years later it was never an option put before us...thank you Geraldo.
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Post by kg91207 on May 24, 2011 9:36:40 GMT -5
that is so awesome. I've heard about that expose. I wonder if I could find it on YouTube or something. I'm so fascinated with history and of course the history leading up to our kiddos having more choices and freedom. I sometimes wonder if I had had Kaelyn back in teh 50's or 60's and was told she needed to go to an institution what I would have done. Anyway, not going to get into that heavy of an issue this early in the day. ha ha!
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Post by Jackie on May 24, 2011 16:33:38 GMT -5
Brandi...you are right...it is a weighty subject. Here is a link to an excerpt www.youtube.com/watch?v=k_sYn8DnlH4 of the Geraldo report. I said it was not an option when Emily was born. I meant it was not an option for US or even mentioned by her neonatologist who later became her pediatrician. However that year (1980) in Denver Colorado during her first year I met two other families who had babies the same age and were told to leave their children in the hospital and go home and think about placing them. One family refused and the other did go to a cabin in the mountains for a few days to decide. Happily both those kids grew up in their own homes...but even a few years later I was hearing that doctors were still advising people not to get attached to them because it would be harder to give them up. YES...its true. While this all seems like ancient history I think large group living facilities might become a way of life again with budget cuts for programs letting adults live independently. We all need to watch things like this to realize how far we have come and how important it is to keep going.
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Post by kg91207 on May 25, 2011 9:17:15 GMT -5
Wow, that's amazing that you heard of other couples who had to make that decision. I can't imagine. the only thing said to us when we got the results of the amnio was that we did have the option of terminating but we were getting close to not having that option since I was so far along. I don't feel that my OB was encouraging that, she did tell us that other doctors there would not even offer that option (hello bible belt) but that she had no problem "assisting" us if we wanted to go that route. That was not even a 5 min. discussion and it was never brought up again. I went to my next appointment and we went on with a healthy pregnancy! (not to say I didn't go home and scream and cuss and ask why, but then I got over it! hee hee)
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Post by Jackie on May 25, 2011 16:38:31 GMT -5
30 years ago not that many knew in advance...but I have heard stories of many who were counselled "not to bring them home"...Thank God for Dr. Lenny Weisman our neonatalogist who NEVER told us anything negative...only what Emily WOULD do.
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Post by Jackie on May 26, 2011 8:16:11 GMT -5
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Post by kg91207 on May 26, 2011 17:41:52 GMT -5
I bet that doctor had no clue exactly ALL the wonderful things Emily would do!!! My OB keeps in touch with us and told me it was because of Kaelyn that she started donating/participating in the Buddy Walk. I love that Kaelyn already had an effect on people from the womb!!! That's my little world leader!
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Post by Jackie on May 27, 2011 8:18:00 GMT -5
Yes she is Brandi.
Finished the book ...has a very nice ending...You should all read it to know where we have been and to keep us from going back there ever again...
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