Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hello Friends, Just a quick note to say hi to everyone and welcome to all the new members. I feel bad that I can't keep up with everyone, but it is so great to read so many member responses to questions and all the warm messages of support to those in need.... Louise, I wanted to tell you especially how much I enjoy reading about - I am amazed at how on top of things you still are 40+ years into this journey! I hope 's recovery goes smoothly. I also wanted to tell you that I had a sister with DS who was born in 1968- so she'd be 35 if she had lived. My Mom was 43, and Susie was the youngest of six. Susie died at 4 1/2 after open heart surgery. She had been ill off and on from birth, but we adored her and all of us were her devoted big sibs. Amazing that she attended early intervention classes (at the Getrude Barber Center in Erie, PA) back in 1971! She was time-trained on the potty, but very delayed with walking, speech, etc. Due to her short presence in our lives, my older brother, my middle sister and I all went into special ed. I worked with adults in different community settings (so it's always interesting to read about the current goings-on in group homes) and then burned out before having my own beautiful son with DS. I have only been in contact with a few other families who have two generations of kids with trisomy 21. I had thought that my son would have had a translocated trisomy but not so. The other amazing thing is that my mom could say to me " I know how you feel " after Ben was born. My special ed background as well as Susie helped me early on around the DS issues, no doubt. But nothing could have really prepared me for the way autism crept in and changed my kid into someone who didn't look any anyone else I'd ever met with DS. I sometimes think about what Susie would be doing today at 35 if she'd lived. She probably would be living with the l'Arche community in Erie, and probably tied into the vocational settings that the Barber Center offers. My mom is now 78, and until a few years ago still volunteered at the Barber Center. She has kept up with some of the kids that were around Susie's age. My mom has not been able to handle Pete by herself, however. I know she worries a lot about how we are going to manage as he gets older. Anyway, just wanted to tell you that since you've been on board with us I find myself thinking more about my sister and what our family dynamics might have looked like. Thank you so much for sharing your obvious passion and deep love for your son. That I should be your age and still be open to new thoughts, ideas, and research " in the field " . Bless you! Beth Mum to Pete (aka Ben) age 13 going on 18- YIKES!!!!! central Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 In a message dated 1/19/2004 2:50:03 PM Central Standard Time, ICANFIELD@... writes: goofed in missing out on typing in that word " not " . Hope he is NOT coming down with something. I understood and figured that was what you meant. went back fine. He was happy to see Vince the staff who was working. Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 --- In , " mum592001 " <ICANFIELD@s...> wrote Sorry Louise, goofed in missing out on typing in that word " not " . Hope he is NOT coming down with something. from a goof ball/butterfinger cyber friend, Me Irma Quote Link to comment Share on other sites More sharing options...
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