tag:blogger.com,1999:blog-35743239.post8592947290929309945..comments2024-03-29T03:43:45.977-04:00Comments on Of Battered Aspect: Parents and Children: A Mother and A SonDave Hingsburgerhttp://www.blogger.com/profile/11918601687946534172noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-35743239.post-1818362445772423972012-08-29T21:27:39.044-04:002012-08-29T21:27:39.044-04:00Dear Dave:
I agree with Moose that nothing can re...Dear Dave:<br /><br />I agree with Moose that nothing can replace real experience.<br /><br />I do think that the mother was scared and while I do agree that the child's experience was of paramount importantce I do not believe you can divorce that so easily from the mother. She loves him fiercely (that is how I interpret her behaviour) and he likely loves her back. She obviously has expectations about him and what kind of life she wants him to have. She hasn't got to the point in parenting where you realize that what you want for your child and what they want can be 2 different things. And here is the thing - when kids try to live up to what parents want for them instead of what they want for themselves - well it never works out very well. <br /><br />I believe that this problem cannot be resolved outside of the relationship. But what you did was give him reassurance that what he suspects is out there is real. I believe he will fight for it. I hope the mother has the courage to let him go.<br /><br />Thanks for the thought provoking posts<br />ColleenColleennoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-8525874912859284412012-08-28T18:44:00.905-04:002012-08-28T18:44:00.905-04:00I don't think it is actually all that easy to ...I don't think it is actually all that easy to be angry at the mother. <br /><br />I think it's much, much easier to have compassion for the mother at the cost of ignoring the son. I think it's damn hard to remember that the mother is not the most important person in the situation, or the most deserving of sympathy.<br /><br />We don't know if she meant well. She might have; she might not have. A lot of parents don't. It's possible to mean well and do bad things, but it's also possible to be the parent of a disabled child and have culpably bad intentions.<br /><br />And whether she did or did not mean well, her feelings and intentions aren't the most important thing here.<br /><br />The most important thing is for the kid to know that what she did was wrong. And to know that someone else also knows that it was wrong, and was willing to act accordingly.JosiahDnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-66743839779354702432012-08-28T18:41:18.162-04:002012-08-28T18:41:18.162-04:00I am a parent of a wonderful little boy with Down ...I am a parent of a wonderful little boy with Down Syndrome. I have learned so much from reading your blog, thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-32238677985723463112012-08-28T17:24:39.480-04:002012-08-28T17:24:39.480-04:00thank you so much for this! perfectly said thank you so much for this! perfectly said Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-18917972864399224542012-08-28T12:26:10.396-04:002012-08-28T12:26:10.396-04:00I always get the sense of fear from your "ang...I always get the sense of fear from your "angry people" stories. Looks like Yoda was right - fear leads to anger, and anger to the dark side.<br /><br />Good post. Shanhttps://www.blogger.com/profile/10704810407872873565noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-33837251634924115522012-08-28T11:28:00.371-04:002012-08-28T11:28:00.371-04:00This sort of "best practice" is exactly ...This sort of "best practice" is exactly the reason we need to speak up for ourselves. Who better to know what is or isn't helpful? Who better to know what we need or don't? <br />The mother from the other day (I didn't post at the time because I think flames would have come out of my ears) is missing out on so much information that she could access, as well as forcing her son to as well. It reads to me like an extreme form of denial; wherever it came from, she obviously took it and ran to a ridiculous extreme. I'd love to know just who came up with the "don't talk to them!" idea of "inclusion." What a load of BS.<br /><br />Doctors simply don't always know, and they don't know what they don't know. This isn't an insult, and many disabilities (mine included!) can involve extensive medical care, but there's way more to disability than any medical aspects. As a kid my mom told me it seemed a bit odd for a kid as healthy as I was to spend so much time around doctors. She was right. Orthopedically I'm...interesting, but I'm not <i>sick.</i>Rachel in Idahonoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-46705627708386502142012-08-28T11:16:27.021-04:002012-08-28T11:16:27.021-04:00You can have empathy and understanding, but nothin...You can have empathy and understanding, but nothing replaces real world experience.<br /><br />There's a term for when doctors make blanket predictions for the future, especially with no scientific basis: Voodoo Medicine. For those who practice Voodoo, Voodoo curses "work" because its victims know about the curse that has been put on them. When doctors make predictions based on nothing but mystery, anecdotal data and/or bad science, it's just Voodoo.<br /><br />Fat people get it all the time. When I was in my 20s I was told I would die before I was 30 if I didn't lose weight. In my 30s I was told I'd die before 40. I'm nearly 50 and I've learned -- any doctor who gives me the "You'll die before..." crap gets an earful of statistics from actual science studies, often just before the words "you're fired, I don't believe in Voodoo Medicine."<br /><br />Disabled people are so often told that they will never be "normal." WTF is "normal"?!? Normal is so flexible it can touch its toes without bending over. Normal means something different for everyone. If being in a wheelchair is your (for a generic definition of "you") normal, then so be it. It's not up to any doctor to use Voodoo Medicine to then declare that you will never do this or that because of your wheelchair. <br /><br />That goes for any other ability or disability out there.<br /><br /><br /><br />Moosehttps://www.blogger.com/profile/10397412122635951126noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-2801967352299595812012-08-28T08:59:36.895-04:002012-08-28T08:59:36.895-04:00I often come across people who judge parents for h...I often come across people who judge parents for having allowed their children to be sent to instititions years ago. I try to explain that that is not a reason to judge or blame, that those parents were really doing what they believed was the best thing they could do for their children at the time, and at great personal sacrifice, since they no longer had their children with them and often had very limited visitation privleges. <br />Parents, it seems that they (we) are often the scapegoats for professionals who change their minds about best practices. CAMnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-35300132029823257092012-08-28T06:59:40.864-04:002012-08-28T06:59:40.864-04:00When Shawen was very young, I read a piece on the ...When Shawen was very young, I read a piece on the internet written by a young woman with muscular dystrophy who had been one of those "poster kids" (is that the right term?) Jerry Lewis used to get donations on his telethon. It was an eye-opening moment, and I then began to value what people with disabilities say about disability over what the non-disabled have to say. <br /><br />Her message was basically to stop spending enormous amounts of money looking for a cure when you could spend more on things that people with MD could use to live more independently. And, more importantly, she rejected the way she was used to make people pity those with disabilities. <br /><br />I try to relate that to my son, and try to figure out what it is he wants out of life instead of what I want for him. <br /><br />It's made more difficult by so many well-intentioned parents. The organizations push inclusion, but then insulate themselves. They talk about how much alike people with DS are to everyone else, then they talk about how "special" and "angel-like" their children are. And I've seen first-hand how some parents manipulate their children with Down syndrome to appear to be "superstars", so I don't always trust the messages they try to preach. <br /><br />This is one of the few places I feel I can hear a truly balanced, sensible, perspective on disability. Sometimes I feel confirmed, sometimes my pov is tweaked and often I feel like you have shown me the real reason that something that has bothered me for a long time is troublesome. <br /><br />As always, I appreciate you and the work you've chosen to do. Tamarahttps://www.blogger.com/profile/04624151975591059655noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-59933230386884457552012-08-28T06:52:30.709-04:002012-08-28T06:52:30.709-04:00This post was written on a hotel internet system t...This post was written on a hotel internet system that was and is constantly crashing, as a result the post is rough, unedited and not entirely well thought through. I didn't say it as well as I wanted to ... but i decided to go ahead.Dave Hingsburgerhttps://www.blogger.com/profile/11918601687946534172noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-49226863929518111452012-08-28T04:48:05.999-04:002012-08-28T04:48:05.999-04:00Dave, these posts are so great. I'm one of th...Dave, these posts are so great. I'm one of those parents, doing the best that I can, meeting whatever adults with Down syndrome I can..... and wanting my daughter to have examples of adults who share her extra chromosome. And wanting ME to have examples of adults to guide me in what it's like, because I don't know.<br /><br />And thank you for reminding us that each parent does the best they can, including the mom in your post the other day. Education: Exploring Online Learninghttps://www.blogger.com/profile/01081392219158709629noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-68767263321076137882012-08-28T01:26:34.953-04:002012-08-28T01:26:34.953-04:00I can somewhat relate to this, as I'm hard of ...I can somewhat relate to this, as I'm hard of hearing, but not Deaf. It's an interesting and somewhat frustrating netherworld. When I was a child, my mother told me that someone (a teacher? a relative?) had suggested that I go to a school for the Deaf, since even with amplification, I had some trouble keeping up. She was afraid that I would somehow lose what residual hearing I have and only sign and no longer speak. Essentially, she didn't want me among children she viewed as more disabled than I. Ultimately, I would have liked to have learned ASL at an early age so I could have become fluent, but I do hear well enough that I eventually made it through school and college in the hearing world. So, while her choice of school was for the wrong reasons, it may have been the right choice. However, I'm sure if I were growing up now, I would have had an IEP and supportive services within an inclusive setting, instead of struggling to the degree that I did.cheeseladyhttps://www.blogger.com/profile/03202316725891368800noreply@blogger.com