tag:blogger.com,1999:blog-2777149089680235167.post5561057966464476817..comments2023-10-30T10:33:15.646-04:00Comments on theSeed: Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?Anonymoushttp://www.blogger.com/profile/12626482643150419473noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2777149089680235167.post-66818210278465534012014-02-23T21:18:31.482-05:002014-02-23T21:18:31.482-05:00I completely agree with you Steven. Whether or not...I completely agree with you Steven. Whether or not a child has a disability, over-protectiveness can have disastrous effects on a person's life. Sometimes it's so hard not to cross over that line!Anonymoushttps://www.blogger.com/profile/12626482643150419473noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-53493356955739323022014-02-23T21:08:51.247-05:002014-02-23T21:08:51.247-05:00I think parents of people with disabilities are wa...I think parents of people with disabilities are way too over protective. I was diagnosed with a genetic neurological condition when I was 16. Till then I thought I was pretty normal.<br /><br />Being able to walk became instantly more difficult. But it was when I was 22 that I began using a wheelchair. I'd left home when I was 18 to go to university. I returned to my dads when I was 20/21 while I got a wheelchair.<br /><br />I returned to uni before I was 23 and I've preferred to have my own life. 300+ miles away -almost the furthest I could be while still living in England. I've got what I wanted from life a nice job, a great wife. I have ambitious goals and aspirations; importantly I have control.<br /><br />It's been difficult at times but that's life. I know it's not going to suit everyone and I've had to work hard for what I have but I'm glad my parents let me.<br /><br />It's possible to over parent a child and if they have disabilities it's seen as normal. But maybe they want their own freedom.<br /><br />Friedrichs ataxia +cardiomyopathy. Anonymoushttps://www.blogger.com/profile/08799177416634503709noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-6709227384515050292013-06-11T18:23:24.924-04:002013-06-11T18:23:24.924-04:00Thanks, Prof...that means a lot to me.Thanks, Prof...that means a lot to me.Anonymoushttps://www.blogger.com/profile/12626482643150419473noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-20313489698375567782013-06-11T11:13:30.198-04:002013-06-11T11:13:30.198-04:00Despite what many authors would have us believe, p...Despite what many authors would have us believe, parenting does not come with an operators manual. Even under easier circumstances, there's always going to be trial and error, and typically more error than we'd prefer. (And, of course, there's the perfect hindsight you mention in your post.) It's hard to avoid feeling self-critical--and a certain amount of self-criticism is crucial as an antidote to complacency--but I can't see that you have anything to beat yourself up for. And what you've learned during your daughter's lifetime is valuable not just in terms of how you care for her, but also in the value that others receive from your candid and thoughtful reflections.Jeremy B.https://www.blogger.com/profile/13100068951010399247noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-50623584107168887812013-06-10T17:11:29.927-04:002013-06-10T17:11:29.927-04:00Yes, you hit a very important point. I don't w...Yes, you hit a very important point. I don't want to go somewhere where she will be "planted" somewhere and expected to stay in that spot for the duration of the "party". Honestly, I don't think people really have a conscious expectation that we do that. I just think that they don't consider all the walking and moving around they do when they visit someone's house (just going from the kitchen to the living room, for instance)and how it's just not possible for my daughter, hence for me. <br />When she was smaller, I tried to go - usually at the urging of my mother so that I would stay included - and found myself following the group around like a lost puppy, trying desperately to fit us in on a small couch or between furniture or down narrow hallways, sweating all the while from the lifting, tranferring and carrying, holding back tears from trying so hard to attain something that just wasn't in the cards for us.<br />I'm done with that. It took me a while to feel comfortable with it. It took my mom a while longer. But as you say, our small unit stays small. And most of the time, I quite like it.<br />Thanks, as always, for your thoughtful addition.Anonymoushttps://www.blogger.com/profile/12626482643150419473noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-44945720623572046922013-06-10T16:58:13.789-04:002013-06-10T16:58:13.789-04:00Yup, Melissa, been there, still there, and still d...Yup, Melissa, been there, still there, and still doing that. For us, it has also been 15 years; for the first 12 Adam was energetic, athletic, yet, he knew in the deep cellular levels that life would change. We have not been on vacation for 15 years, but it's ok. Life, as it is, has much purpose and has taught something I would never have known about...<br />We don't take Adam to any place where he cannot have our full attention. I don't mind navigating the barriers like steps, narrow hallways, etc. I do mind that no one pays attention except for about 10 seconds. They expect that we should plant him in front of tv and get on with the party. There is no party unless you choose to involve and engage him. Probably fear, lack of knowledge, indifference...who cares, doesn't happen. So our small unit stays small.<br />Most comforting reading which explains it like it is, a book called "Chronic Sorrow" by Susan Roos. You just wrote about it quite well.Phil Dzialohttps://www.blogger.com/profile/04150881545903849250noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-38479076075261617672013-06-10T15:53:39.877-04:002013-06-10T15:53:39.877-04:00Thanks, Vlad! When I reeeeaally don't want to ...Thanks, Vlad! When I reeeeaally don't want to do something because I'm afraid of what may be, I just try to tell myself that it's not for ME, it's for HER. I won't lie and say it works every time but the truth is, it has gotten easier...so as with pretty much everything in life, practice makes perfect (or as close to it as possible!)Anonymoushttps://www.blogger.com/profile/12626482643150419473noreply@blogger.comtag:blogger.com,1999:blog-2777149089680235167.post-28018236416470046022013-06-10T15:46:58.877-04:002013-06-10T15:46:58.877-04:00Fear is something that envelopes us as human being...Fear is something that envelopes us as human beings. I think we've all had moments like that (God knows I have too many of them), but I think if you asked your daughter what she sees when she sees you she'll say a hero because that is what a hero does. They put aside their fears for the sake of someone or something else to ensure sanctuary. That is exactly what you did which caused her to be around people she loves. She realizes the sacrifices you make for her and in her eyes she probably doesn't see fear. She sees bravery, a person who can defy the obstacles that she cannot and a person who can provide protection when she needs them. Take comfort in the fact your her hero or better yet Walking Fortress Of Solitude.Anonymoushttps://www.blogger.com/profile/01157261512271935586noreply@blogger.com