tag:blogger.com,1999:blog-35743239.post5838866969998928423..comments2024-03-19T07:36:33.915-04:00Comments on Of Battered Aspect: BoundariesDave Hingsburgerhttp://www.blogger.com/profile/11918601687946534172noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-35743239.post-16908074573441578302013-06-11T18:38:31.906-04:002013-06-11T18:38:31.906-04:00I was always concerned about this. On one hand, I ...I was always concerned about this. On one hand, I wanted to blog about the reality of life with Ricki, because I felt that for other parents, a true view of life with a teen with Down syndrome (rather than the popular "I love it that my kid has Down syndrome and he is GORGEOUS" mode) would be helpful. But there is a definite distinction between labeling an action as "bad" and a person as "bad". I hope I never gave the impression that Ricki was worth less or less loved due to her occaisional exasperating behavior. I also allowed myself a bit more leeway in what I wrote because:<br />1)Most people in my town do not read blogs<br />2) Ricki did not know English<br />3) "Ricki" is a pseudonym. I was careful to try and disguise our identity until she died and I posted (briefly) our address so that people could come to the "shiva".<br /> But this is a problem to be considered.Rickismomhttps://www.blogger.com/profile/04078192111057725026noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-65674620661855443082013-06-07T10:47:01.031-04:002013-06-07T10:47:01.031-04:00sooo important. i think there is a danger that we ...sooo important. i think there is a danger that we as a society will find the truth of this a generation too late when relationships have been shook and kids traumatised.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-47481982670106310442013-06-07T10:00:13.524-04:002013-06-07T10:00:13.524-04:00Anyone who hasn't learned the Internet is fore...Anyone who hasn't learned the Internet is forever should not be allowed to play on it.<br /><br />If I tell stories, it is on myself - good or bad. If I ever get many readers for my fiction, I want whatever I wrote about myself as a person to be something I don't mind these future readers to know.<br /><br />But after that, I hope to be remembered for the fiction, not the truth. I have little control over the truth.<br />ABEAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-84800387374751942822013-06-07T09:21:15.445-04:002013-06-07T09:21:15.445-04:00Sometimes,I think that when one is in the middle o...Sometimes,I think that when one is in the middle of a negative emotion and tucked squarely away in his or her corner of social media, the release (or comment) confounds the idea of boundaries -- for the writer or the child. <br /><br />As a former blogger, I wrote my heart out. When I look back on those days (years, actually) it was cathartic and I developed my own sense of strength at the mercy of someone reading my words and perhaps thinking that I was wrong or putting my son's special needs on display that would eventually harm him emotionally if only he knew...However, *I* needed this. And I did it.<br /><br />As a mother to someone who has special needs (and I only use that term lightly because really at this point in our life his needs wan in light of friends I've met in the community...) the ferocity of my love for my son makes me fight the bigger fight of advocacy. Perhaps what you're reading in these posts on FB and blogs is the "emotionally refueling" that many of us need because there are days when the world is REALLY shitty and it's hard to navigate and it's easier to blame the characteristics of a syndrome than it is to fight the whole world. <br /><br />The difference I hope is that it is a fleeting moment when a parent feels and writes a comment that isn't appropriate or helpful or loving towards his or her own child. If it is ongoing, I, too, wonder about what is REALLY going on...<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-18491732304842812412013-06-07T07:37:31.731-04:002013-06-07T07:37:31.731-04:00I agree. I started thinking about that when I was ...I agree. I started thinking about that when I was blogging and have blogged very little the last few years. Even though I don't think I was disrespectful, I just feel like I need to be more careful. Hopefully, I am. Tamarahttps://www.blogger.com/profile/04624151975591059655noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-19733967225992516702013-06-07T07:12:50.194-04:002013-06-07T07:12:50.194-04:00I agree - and like you, I'm shocked at times b...I agree - and like you, I'm shocked at times by what people will say online about their kids, not thinking that someday the kids will read it and be hurt by it. More thoughtful kindness in the world would go a long, long way!painting with firehttps://www.blogger.com/profile/01578014572547587329noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-18012566607939921732013-06-07T06:22:14.008-04:002013-06-07T06:22:14.008-04:00Once again- well said, David. While Social Media h...Once again- well said, David. While Social Media has it's perks, it also has a huge downside.<br /><br />I am the parent of a child affected by disabilty plus I work in the field with other individuals affected by disability. It sickens me to read some of the posts that I have read from other parents who have a child affected by disability- who use Facebook to bitch and moan about their child in a very negative light. I did reply to one individual who REALLY got under my skin after she expressed how her child affected by disability was "ruining" her family. I commented that while her child might not have to ability to read her Facebook status- that the community and society in general could... and if the child's own mother felt this way- how did she expect the child's siblings, other family members,educators or society in general to view her child in a positive light. I had never seen her rant about her typically developing kids like that- so why the child with a disability. <br /><br />I do post a lot about my child, in a positive light. She has many beautiful gifts and attributes that I want the world to see. I want other individuals and families affected by disability to realize that we all have struggles but we also have many, many wonderful gains and successes! So... remember to CHEW YOUR WORDS BEFORE YOU SPIT THEM OUT! :) <br /> Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-50613814607082711802013-06-07T05:54:56.595-04:002013-06-07T05:54:56.595-04:00Amen!!!! Parents who relish telling stories on th...Amen!!!! Parents who relish telling stories on their children need to find some more satisfying way to meet their own needs!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-91196102041863729882013-06-07T05:30:59.338-04:002013-06-07T05:30:59.338-04:00Thanks for this, Dave. This is an important issue....Thanks for this, Dave. This is an important issue.GirlWithTheCanehttp://www.girlwiththecane.comnoreply@blogger.com