tag:blogger.com,1999:blog-22878815.post114801749951429149..comments2009-02-13T16:32:38.464-06:00Rob Rummel-Hudsonhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-22878815.post-42563073052423331092009-02-13T16:32:00.000-06:002009-02-13T16:32:00.000-06:00I'm three years behind again, but I'm enjoying reading the old posts.<BR/>I'm glad you wrote about the Box, because I'm fascinated with linguistics, communication, and technology, as well as child development, and here they all are in one place.Emmet of Arolishttp://www.blogger.com/profile/03465851029524516587noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1165249301559281222006-12-04T10:21:00.000-06:002006-12-04T10:21:00.000-06:00Well, for now you can go to the <A HREF="http://darn-tootin.com/archive.html" REL="nofollow">Darn Tootin archives</A>, but be aware that as soon as my manuscript gets turned in, all my old stuff will most likely disappear.<BR/><BR/>And thanks!Robhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1165249139540821462006-12-04T10:18:00.000-06:002006-12-04T10:18:00.000-06:00I hope you get her some good swear words programmed into the box so that she can continue to be sassy and subversive. I just found the blog and am reading from the beginning. Is there anyplace that the older archives can be read - not just the excerpts on darntootin, or do we have to wait for the book? <BR/><BR/>You have a beautiful daughter. She *does* look like Drew Barrymore, and now I'm going to have to let my kids go punk with the hair at that age because it's sooooooooooo cool!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148162025696601612006-05-20T16:53:00.000-05:002006-05-20T16:53:00.000-05:00Heheeee... "Penis" Yes, right on schedule. A little ahead of schedule, in fact. Haven't heard that gem from my 8 year old niece yet (and since my hubby and I are her two primary negative influences, if she's said it I expect it would have been with us present!) Hell, at 6 my niece threw me aback by telling me it was apparently "my turn" to have a baby. I made this mistake of asking her where in the world I would get a baby, thinking that would end the discussion. BIG mistake!<BR/><BR/>Schuyler rocks, and your writing about her really captures the essence of her soul and spirit. If I were Schuyler's age, she would SO be the girl in class I'd want to be around. Genuine, happy but introspective, intriguing, wise beyond her years and non-judgmental (except of assmonkeys that deserve to have their butts kicked.)Shannonhttp://www.geekhabitat.com/noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148135820087235152006-05-20T09:37:00.000-05:002006-05-20T09:37:00.000-05:00Neat! I feel almost guilty about being so curious about the BBoW, but heck, I'm a nerd. I'd be just as curious if you started writing about one of those awesome little computers that sits in your car and tells you where to go. :-) <BR/><BR/>It's so cool that she's spelling out words on the device!! I'm trying to think back to when I was learning reading/spelling, and wow, she's six?? That sounds awfully impressive to me. I'm also wondering if she's going to "graduate" to a device at some point where she'd just type everything in herself. Or start typing in the computer! <BR/><BR/>My bet is that it's just a matter of time before we're all reading Schuyler's entries about whatever weird things her daddy did today. :-DAja B.http://www.blogger.com/profile/09436145192322256169noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148095815254737572006-05-19T22:30:00.000-05:002006-05-19T22:30:00.000-05:00Thanks for writing about her device, enjoyed this entry, but, then again, I enjoy all of your entries!<BR/><BR/>When you had your blood sugar episode that caused you to go on double medication, was it a high glucose or low one? I'm guessing high. My son has diabetes and I'm just curious. I'm always freaked out over the low episodes, worry that he will fall into a coma!<BR/><BR/>Vix<BR/>www.geocities.com/vixenaccount/blog.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148077522986297992006-05-19T17:25:00.000-05:002006-05-19T17:25:00.000-05:00I love the story of the word "penis" floating up into the car. Potty-type talk exploration and right on schedule! How proud you must be.(insert big grin here) Seriously, that story really and truly is a sign of how far she has come and is coming. (But then I'm the mother who was thrilled when her older daughter learned to lie at a ripe old age (like 8 or so) because it meant she had finally grasped that I was a different entity than she was--and that child is in college now and doing well.)Planktonhttp://plankton.diaryland.comnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148064296206675852006-05-19T13:44:00.000-05:002006-05-19T13:44:00.000-05:00I know that everything is not perfect and rosy and swell, but I have to say, when I think back to the posts you wrote when Schuyler got her CBPS diagnosis, I didn't know that you and she would ever get this far. <BR/>It's a testament to you and Julie as parents and to Schuler's irrepresible will to be who she is. <BR/>You guys are truly amazing.TBhttp://soulgardening.typepad.com/noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148064233773275262006-05-19T13:43:00.000-05:002006-05-19T13:43:00.000-05:00Thank you for the post about the box. I used to go to school with a girl who had cerebral palsy and she used a device similar to Schuyler's to talk.<BR/><BR/>I wonder when Schuyler gets older if she will use a different box so she can just type in what she wants to say and the machine will say it for her.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148060935498084152006-05-19T12:48:00.000-05:002006-05-19T12:48:00.000-05:00I was not one of the ones who desperately wanted to know about the BBoW, but that is cool to know.Elisettehttp://www.blogger.com/profile/11051970485066842783noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148060118587550132006-05-19T12:35:00.000-05:002006-05-19T12:35:00.000-05:00Wow- I wouldn't have thought a six-year-old could use something that complicated! But then, it sounds like the box itself helps kids over the learning curve. Something like that might even be useful as a learning tool for kids who aren't impaired at all! Oh, wait, the Leap Frog people got there already. But it's still pretty cool that the device seems to teach it's own use.How do you know I'm not Liddy Wales?http://www.blogger.com/profile/17586379091783284513noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148058093498368302006-05-19T12:01:00.000-05:002006-05-19T12:01:00.000-05:00Thanks for sharing that, it's great to hear about Schuyler and the BBoW. Your family is really inspiring. <BR/><BR/>Ps. I think it's good the you call it her 'device' rather than her 'voice', or whatever. A voice can be so much more than just verbal.Amyhttp://www.blogger.com/profile/13382671731743234433noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148057505611222482006-05-19T11:51:00.000-05:002006-05-19T11:51:00.000-05:00Thanks for this. I'd let her use it whenever and wherever she wanted to use it and to hell with everyone else. If people cannot be understanding and show compassion...then you're right, fuck them.<BR/><BR/>Does Schuyler know a lot of sign language or just a few words? Is she being taught that in school as well?Karenhttp://journals.aol.com/karensull12/JustaGlimpsenoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148054281653434972006-05-19T10:58:00.000-05:002006-05-19T10:58:00.000-05:00Thanks for this entry Rob, it's both interesting and inspirational.Jim Howardhttp://grayraven.com/JimNtexasnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148050776074364142006-05-19T09:59:00.000-05:002006-05-19T09:59:00.000-05:00I'd wondered if she could use it in bright daylight, I know I can't see my laptop well. <BR/>So I'm taking it that if she spells a word, it will sound it out? Like if she learns words in spanish, which I'm sure she will in TX, will it say the word with an accent, or does it have other languages programed in too? <BR/>Like a lawyer, maybe you should call it her mouthpiece? LOL<BR/>DonnathedeadAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148050602505743192006-05-19T09:56:00.000-05:002006-05-19T09:56:00.000-05:00Fascinating, Rob. I've "known" Schuyler since before she was born and am always happy to hear and am amazed by her accomplishments.Terri from Detroitusnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148046772024064762006-05-19T08:52:00.000-05:002006-05-19T08:52:00.000-05:00Oh, it is so wonderfully satisfying to hear that she's spelling her own words and doing math and all kinds of things that mean that the people who said she wouldn't be able to get much use out of the device were SO wrong. It quiets my vindictive side.<BR/><BR/>She's such an amazing kid, and I'm so happy (in a strange internet I don't actually know y'all kind of way) that she has the big box of words.Shellyhttp://www.blogger.com/profile/16126728924948531076noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148046116480316522006-05-19T08:41:00.000-05:002006-05-19T08:41:00.000-05:00Thanks, Rob.<BR/><BR/>Kiss the girls!grandefillehttp://www.blogger.com/profile/08903263189589894366noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148038319187278782006-05-19T06:31:00.000-05:002006-05-19T06:31:00.000-05:00Thanks for the BBoW primer. I was curious but never asked, because I figured you'd share if you wanted.Lucyhttp://catniptea.diaryland.comnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148036842918996862006-05-19T06:07:00.000-05:002006-05-19T06:07:00.000-05:00Your little girl is an inspiration and probably alot smarter then most will give her credit for.mistyforeverlosthttp://www.blogger.com/profile/01744167021609528161noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148033881777461502006-05-19T05:18:00.000-05:002006-05-19T05:18:00.000-05:00I am certain that your daughter is much smarter than you will ever know. As you said, it is hard to measure a non-verbal child.<BR/><BR/>However, a six year old child using two or three forms of communication as complex as sign language, the BBoW, etc is definitely ahead of the game. I think that ALL children her age should learn sign language.rennratthttp://www.blogger.com/profile/04806092334827955769noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148031392489522722006-05-19T04:36:00.000-05:002006-05-19T04:36:00.000-05:00Ever since I've been reading your blog I have been impressed with her BBOW and very glad that such a device is available.<BR/><BR/>That's great she orders her own dinner, way to go sweet girl.<BR/><BR/>I'm LOL at the swear word comment.Vandahttp://www.blogger.com/profile/01721831148124756983noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148027703260846732006-05-19T03:35:00.000-05:002006-05-19T03:35:00.000-05:00I think it's great you are exposing people to augmentative communication, which may seem so simple and everyday to you, but probably very foreign to them.<BR/><BR/>I don't understand why you must explain and defend yourself constantly to people about the money you raised for your daughter. I understand you feel compelled to explain I mean, but I don't get why you are expected to feel some kind of guilt about it.<BR/><BR/>I was in a very lonely and difficult situation with my disabled little boy. He is much more disabled in the sense that he can't walk or do much at all for himself, and people always either turned their heads, expressed much too much sympathy and then turned away, or attempted to make me feel guilty in some way. It was rare to find someone genuine. In the end, being a single mom with 2 children (one "normal"), and after being forced into poverty since no daycare would take my 9 year old child still drooling and in diapers, I gave him up to a relative to raise. I had very little support and I felt so alone and ANGRY about the whole situation.<BR/><BR/>I promised myself, should I ever be in a position to make life just a little bit easier for someone else in a similar world, I would do whatever I could for those people. <BR/>You were one of those families I chose to give a little to, no strings attached. I hope I, and many others, made your life, and in the long run your daughter's life, a little easier.<BR/><BR/>Keep up the great job you're doing, Rob and Julie!Shananoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148022107013801892006-05-19T02:01:00.000-05:002006-05-19T02:01:00.000-05:00Wow, that was so interesting. Thanks for sharing.<BR/><BR/>I'm glad you don't call that device her voice.<BR/><BR/>That's really cool....Schuyler definitely has her own voice as you are discovering everyday through her communication with you: written, verbal and non-verbal.<BR/><BR/>I bet its so fun watching her blossom everyday.<BR/><BR/>And how great that you expect her to be "normal" (what's that anyway...) because she is normal in so many ways, and have her order at restaraunts. Every good parent (including myself - ha!) has their child do so as early as they can.<BR/><BR/>f@#$ those impatient people who mind waiting..........CameraDawktorhttp://www.blogger.com/profile/16308786736918922264noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-1148020384575063472006-05-19T01:33:00.000-05:002006-05-19T01:33:00.000-05:00Haha... Yeah I think she will be spelling bad words sooner, rather than later. I can just imagine her riding in a car or sitting in class spelling out 'penis' for the teacher, or swearing up a storm and laughing. I love to hear about her achievements and sometimes it makes me wonder if I should be working as hard as she is to achieve. Great entry to start the day with right before an exam!!! Thanks! :)Alyssahttp://www.blogger.com/profile/11922944498080925208noreply@blogger.com