tag:blogger.com,1999:blog-447392662850613354.post4068087246732671729..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: What makes us human?BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-447392662850613354.post-66932667767723146562010-01-26T21:08:13.718-05:002010-01-26T21:08:13.718-05:00Not sure if anyone will read this, as this post is...Not sure if anyone will read this, as this post is almost two weeks old, but I had to comment. I taught special ed for five years and intellecutal disability was part of what I dealt with. I NEVER felt that intellectual disability hurt children other than the ways that it's described here--because these children were ostracized and made fun of. Really, maybe we need to turn the tables and ask why we find it's acceptable to treat them like that?Katyhttps://www.blogger.com/profile/02189007616883663434noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-82031400548229042192010-01-25T11:08:55.617-05:002010-01-25T11:08:55.617-05:00Dave -- I think you hit the nail on the head when ...Dave -- I think you hit the nail on the head when you said your son is teaching you how to be human. And yes, while our culture frets about whether we're making full use of our brains, it's not so often that anyone stops to measure (or value) the capacity of our hearts. Cheers!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-85237591070077992062010-01-25T11:03:14.710-05:002010-01-25T11:03:14.710-05:00Katharine -- I loved the image of you nodding away...Katharine -- I loved the image of you nodding away like those bobble animals! And I so agree with your comment: "The peace inside of me tells me that my child is not wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success." Bravo!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-75866295153639472172010-01-23T21:52:05.686-05:002010-01-23T21:52:05.686-05:00I can't stop thinking about the questions you ...I can't stop thinking about the questions you raised. I also can't help thinking that the folks who view mental disability as a measure of humanity are wandering into a materialistic view of the world - a very cold and heartless view. <br /><br />My little guy has damage on over half of his brain, but I've never met a soul who so utterly relishes every moment of life - he's teaching me how to be a human all the time. <br /><br />Folks are always musing on the percent of use we get out of our brains. My little guy has made me believe it's far more important to measure the percent of use we get out of our hearts. <br /><br />Kudos on a great, thoughtful and heartfelt piece Louise. You're an inspiration.David Sextonhttps://www.blogger.com/profile/02556969930448666864noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-82617634258428962152010-01-22T15:22:05.584-05:002010-01-22T15:22:05.584-05:00Well Louise ...its Max's mom.
Once again you ...Well Louise ...its Max's mom.<br /><br />Once again you have spoken words that I did not know were in me but I am nodding away like those plastic dogs in the back of a car in the 1970's. <br /><br />Without hot there is not cold, without winter no summer, and without able bodied children no disabled bodied children. Differences make people afraid. And like Elizabeth above "What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes" I dispise spending my time trying to right the 'wrong and disabled' attitudes of so many who see those with disabilities as the 'wrong' ones in this world. The peace inside of me tells me that my child is not 'wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success.<br /><br />ahhh...its off my chest<br /><br />Well done again.<br /><br />KatharineMax's momhttp://yahoo.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-7725854141881071002010-01-22T15:18:45.486-05:002010-01-22T15:18:45.486-05:00Well Louise ...once again you have spoken words th...Well Louise ...once again you have spoken words that I did not know were in me but I am nodding away like those plastic dogs in the back of a car in the 1970's. <br /><br />Without hot there is not cold, without winter no summer, and without able bodied children no disabled bodied children. Differences make people afraid. And like Elizabeth above "What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes" I dispise spending my time trying to right the 'wrong and disabled' attitudes of so many who see those with disabilities as the 'wrong' ones in this world. The peace inside of me tells me that my child is not 'wrong' ...he is just the right medicine for so many people who need to slow down and feel grateful and happy about something other than $$$, things, smarts and career success.<br /><br />ahhh...its off my chest<br /><br />Well done again.<br /><br />KatharineMax's Momnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-52757324748659290272010-01-14T03:21:02.934-05:002010-01-14T03:21:02.934-05:00This is such an excellent article, Louise!This is such an excellent article, Louise!erikahttps://www.blogger.com/profile/03048369118376287016noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-45857861829711248862010-01-13T09:29:50.569-05:002010-01-13T09:29:50.569-05:00Hi Louise: Thanks for visiting my blog at Choices ...Hi Louise: Thanks for visiting my blog at Choices That Matter. And I've loved reading various blog posts, including this one, responding to the Motherlode piece. I feel like the comments on Motherlode are a pretty comprehensive representation of all the "big" questions that we as a culture need to be asking about suffering, disability, and medicine in light of new reproductive and genetic technologies.<br /><br />I would like to talk to you about your prenatal diagnosis experiences. I am gathering names and contact info to start a formal interview process in February. You (and anyone else who reads your blog) can read more about the interview process at my blog, Choices That Matter. (If you click on my name attached to this comment, you will be taken to the site, and on the top right corner of the page you'll see "Tell Me Your Story.") Or you can e-mail me directly at 5dollars [at] comcast [dot] net.<br /><br />Looking forward to talking with you and reading more on your blog (now added to my Google reader!).Ellen Painter Dollarhttp://choicesthatmatter.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-32602941336374001502010-01-13T09:04:49.092-05:002010-01-13T09:04:49.092-05:00Lianna -- I did see Good Will Hunting -- but the o...Lianna -- I did see Good Will Hunting -- but the old memory is not working very well! Perhaps I'll rent it again. But I do get what you're saying about how different "book learning" or philosophizing about a topic from a distance is from actually living it. And I went back on Amazon last night and lo and behold the Soper book was there. Go figure. I'll have to check it out.<br /><br />Thank you Elizabeth!<br /><br />Emma, of course you can link to this -- hope to hear more from you.<br /><br />And Claire -- yes, it is not the attempt to improve a child's life through drug or other therapy that I find offensive. It's relegating people with cognitive disabilities to second-class "personhood," with the implication that their entire "being" needs to be transformed through a "cure" to raise them to human status. I'm always glad to see you here and I LOVED the photos of your new home, which looks perfect!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-3852959566836204802010-01-13T08:46:08.312-05:002010-01-13T08:46:08.312-05:00What a great post!! Personally, I always thought ...What a great post!! Personally, I always thought that being born a human being,made you a human being. Period. Then you deserve all the rights to protection, life, etc. that all human beings deserve.<br /><br />You are so right about cognitive disabilities not necessarily leading to "suffering"...and that society makes problems in this regard. <br /><br />However...there has to be a bit of a distinction here. Some people's cognitive challenges pose a danger to them, regardless of society and it's (sometimes idiotic) views. For instance, my friend's daughter who has Down's Syndrome and is hard of hearing is an eloper. She runs every chance she gets...she has no sense of fear or of self-protection because of her cognitive disabilities...she could get hit by a car, or die in the woods on a cold winter day...This is why I support cure. It's just not possible for a child/adult to be watched perfectly all the time...some eat all kinds of stuff (pica), some bang their heads, some are violent because of their cognitive disabilities. They need help of a "fix it" sort, as well as of a societal sort.<br /><br />Having said all that, because of your post, Louise, I have had this "aha" moment...where I suddenly get why some parents get so offended at these types of "news" stories...it does make it sound like their kids are worthless, or not deserving to be alive and other things. I never understood that before and now I do. Thank you very much..I am more sensitive to this as a result.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-4363466789282341082010-01-13T07:33:58.025-05:002010-01-13T07:33:58.025-05:00Hi Louise, In answer to your question about Soper&...Hi Louise, In answer to your question about Soper's book; I signed it out of our local library. It's a hardcover and I believe the soft cover is out or out shortly. It's a really well written book!<br /><br />I LOVE your blog, Louise and I hope that you have many many more readers in 2010!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-41070388380284560072010-01-13T03:00:33.347-05:002010-01-13T03:00:33.347-05:00What a great post (I would like to put a link to i...What a great post (I would like to put a link to it on my blog if you don't mind?).<br /><br />I'm glad the doctor pointed out "far from being a cure" - unfortunately the media has far too much influence. It's nature has become to exaggerate and and use lines which provoke emotion ("suffers from" " "overcoming the odds" "hope for sufferers of" etc).emmahttps://www.blogger.com/profile/04195918097785592926noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-33570581613707936462010-01-12T19:55:41.177-05:002010-01-12T19:55:41.177-05:00What bothers you, bothers me, and frankly, I don&#...What bothers you, bothers me, and frankly, I don't have the energy to constantly be in dialogue with this. I look on the subject as, perhaps, my life's work, and it's so draining sometimes.<br /><br />Forgive me if I don't say anything other than this is a great, provocative and informative piece (as always!).Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-57721862180478628982010-01-12T18:57:36.166-05:002010-01-12T18:57:36.166-05:00If there is one thing I've witnessed since Gab...If there is one thing I've witnessed since Gabe was born is that the more educated people are, these same people are detached from the "human factor". I saw this in doctors, especially, during Gabe's first year.<br /><br />Have you seen the movie, "Good Will Hunting"? When the psychologist points out to Will that he has not seen any of the things he's read about in all his books in an effort to get Will to follow his dreams, it dawned on me that so many people in this world lead this type of lifestyle. <br /><br />Anyone, myself included, can rant about what we have read or studied, and apply that knowledge in opinions. But until we live -- actually become immersed in what we so eagerly opine about -- we will never quite know what we're talking about, will we? So, for the commentors that feel they know more than we, parents of children with Ds, do, I have to ignore them.<br /><br />Although I like the idea of Gabriel having the ability to keep his cognitive development steady and his memory good, (I worry incessantly over what will happen to him later on in life), I don't need society telling me that he needs curing. So, like you, I see the research as a positive thing and the media thing to be a pain in the ass.<br /><br />Your son is adorable! Both your children are adorable!Anonymousnoreply@blogger.com