tag:blogger.com,1999:blog-401303964563152307.post7559885063384796935..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : Sarah Palin, allow me to adjust your special needs attitudeEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger48125tag:blogger.com,1999:blog-401303964563152307.post-31913219524181648482012-12-21T20:08:29.824-05:002012-12-21T20:08:29.824-05:00Hypocrite. You are an anonymous commenter too.Hypocrite. You are an anonymous commenter too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29402650625217668592012-12-19T13:23:14.588-05:002012-12-19T13:23:14.588-05:00I'm an autistic band zealot. My band director ...I'm an autistic band zealot. My band director never pities me like Sarah Palin pities her son Trig. I am passionate about practicing, possibly to the point of eccentricity. I also know a girl with Down's Syndrome. Everyone loves her expressive nature. I know I do.Anonymoushttps://www.blogger.com/profile/16576844684725684941noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73524090440983129132012-12-19T13:19:15.219-05:002012-12-19T13:19:15.219-05:00It's called a sense of humor, not attacking so...It's called a sense of humor, not attacking someone. Anonymoushttps://www.blogger.com/profile/16576844684725684941noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-90279268023270669002012-12-19T13:18:16.147-05:002012-12-19T13:18:16.147-05:00She's right. I am autistic and she taught me n...She's right. I am autistic and she taught me not to pity myself.Anonymoushttps://www.blogger.com/profile/16576844684725684941noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66521235401569616642012-02-25T05:11:54.901-05:002012-02-25T05:11:54.901-05:00I am going to make my mom read this God knows she ...I am going to make my mom read this God knows she loves me but she shares Sarah Palin's special needs attitude which makes me sad considering I am more abled than disabled.Nishahttp://nisha360.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66538428300205182972012-02-14T09:06:19.908-05:002012-02-14T09:06:19.908-05:00Agreed, Ellen! I can appreciate that you felt Pali...Agreed, Ellen! I can appreciate that you felt Palin reinforced some negative stereotypes - I guess I'm more inclined to just be grateful that something positive was written about parenting a child with special needs, as opposed to much of the faux-positive press that people with disabilities so often receive ("Cerebral Palsy Sufferer Achieves X" and "Down Syndrome Victim Inspires Others" - the words "sufferer" and "victim" in the headlines of feel-good stories is one of my pet peeves!) I should probably have also stated that Mr. Andi and I were comp'd two tickets to hear her speak at a non-political fundraiser for the local exceptional foundation last year. I expected her to be "all politics" but she surprised me. I've heard all of the criticism that she uses Trig as a prop and isn't involved with him at all, but many of things she said that night told me that she feels what I feel as a special needs mom - there are some things you just can't fake, if you know what I mean. :)<br /><br />And for the record - I don't think your post was inappropriate or a personal attack - there have certainly been much worse things written about Sarah Palin than this piece! :) She is a public figure by her own choosing, so by definition she is "fair game" for critique when she speaks. I recently received my own share of "you're a horrible person because you wrote that" about another public figure, even though my post wasn't meant to be entirely negative or positive (I was also blasted for defending the person I was accused of tearing down...go figure!)<br /><br />The great thing about this post - even though I disagree with much of it - is that you encouraged people to think about how disability is portrayed in our culture, even by some parents of those with disabilities. I also think we as parents need to realize that for all of our desire to achieve inclusion for our kids and do our best to help them reach their maximum potential, we can become the biggest obstacle to those two goals if we aren't careful.<br /><br />Thanks for the lively, productive debate!Andi @ BringingtheSunshine.comhttp://www.bringingthesunshine.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-6314178968497459702012-02-11T20:56:55.749-05:002012-02-11T20:56:55.749-05:00Andi, I respect what you said, and adore you right...Andi, I respect what you said, and adore you right back. There are many ways to read into a piece, and everyone is entitled to their opinion. Opinion: That's what this post is, and that's what this blog is. The one thing I have been feeling deeply bad about is people believing I was slamming Palin for her lack of acceptance of Trig. I wasn't, at all—that's the opposite of what I do on this blog. In the last few years, I've read several articles where she's talked about feeling blessed (as she does here). I do think she has acceptance. And I also think she reinforced some negative stereotypes about kids with special needs. All I want is for our kids to be accepted by the world as human beings who are measured by the same worth as any people are. If I've gone overboard, it's because I care so deeply about that.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80948959147396903332012-02-11T19:24:23.418-05:002012-02-11T19:24:23.418-05:00Way too many lengthy comments by annonymous commen...Way too many lengthy comments by annonymous commenters. Who are they-or-who cares?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-92084033702337903682012-02-11T03:22:04.916-05:002012-02-11T03:22:04.916-05:00I've got news for Sarah and lots of parents of...I've got news for Sarah and lots of parents of "normal" kids--most of those normal kids won't be the next Wayne Gretzky either, but that doesn't mean all those parents are unhappy about that. <br /><br />Being a public figure, Sarah Palin must be accountable for what she says. In the article she was putting herself out there as a spokesperson, representing special needs parents. It is not mean spirited to challenge her statements. How else will she grow if her statements are not challenged?<br /><br />I am not only my daughter's advocate, I am her cheerleader, critic, and defender. I was shopping for souvenirs in Ketchikan while on a cruise in 2005 when I heard a woman shriek behind me: "God bless you, you poor child." I turned around to find a woman trying to hug my daughter in her wheelchair. I gently removed the woman's hands from Amber and told her: "God already does, thank you."<br /><br />I was upset about that interaction for most of the afternoon. How dare this woman suggest to people, but especially to my daughter, that God has not blessed her because of her disabilities. <br /><br />Jim always tries to give me a better perspective. Recently someone commented that I had to be miserable from "pushing that girl around all these years." I was furious but Jim just pondered aloud whether he had been more miserable pushing her around Disneyland, Sea World, Oahu, Maui, the San Diego Zoo, Costa Rica, Acapulco.... You get the idea.Teresanoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-49537404919879958552012-02-10T16:44:43.373-05:002012-02-10T16:44:43.373-05:00You are way off here, Ellen.
I believe that I rea...You are way off here, Ellen.<br /><br />I believe that I read somewhere you wrote a special needs parents' bill of rights. I will paraphrase you in saying that you wrote that it is okay to mourn once in awhile. <br /><br />I am not a fan of Sarah Palin in any way, but I am shocked that you would criticize her in this way. <br /><br />Please remember that her child is much younger than yours and acceptance is a journey.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70940663234323443002012-02-10T15:17:51.877-05:002012-02-10T15:17:51.877-05:00hmmm, this post takes a lot of digesting. While I...hmmm, this post takes a lot of digesting. While I skimmed thru the post from Palin first (as a full time mommy to 4, 2 having special needs) I don't have time to pull it apart. More power to you if that what you want to do..you know publicaly bash another special needs mom? However I do want to menion my kids are not "normal". None of my kids are. Even the 2 non-special needs kids. They are not normal either. They have a compassion for the hurt, the confused, and the "special". They know what a trach is and could probably suction it with ease, they are used to specticles made in large crowds, and sometimes join in. My 2 special needs kids are not normal either. One loves to sit and stare at a blade of grass for hours on end, 1 prefers to literally tear down dry-wall. Now that I know Max is "normal", I have something to compare my children too. All four of them, not normal. Maybe in my spare time I shall take one of your first posts made when you joined the special needs world and see if I have anything to pick apart.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-65884882572499199632012-02-10T14:34:48.904-05:002012-02-10T14:34:48.904-05:00Ellen, you know I love you, but I'm going to h...Ellen, you know I love you, but I'm going to have to disagree with you on a few points. I didn't comment initially because you made me think - I began to wonder if maybe I shouldn't have viewed the piece favorably when I first read it a few days ago. Eventually, though, I decided to speak up, because I'd also like to remind you of some things you may have not thought of when reading the Palin piece.<br /><br />As to #1 - It appears to me, since she put the word normal in quotations, that she wasn't saying Trig isn't normal or that other people are - I might phrase it the same way if I were writing to a general audience. We who live in Special Needs Land use language like typical/non-typical, but I don't know that the audience she was writing for would grasp the nuance. The quotes, in my opinion, hinted at normal being...well, a ridiculous construction.<br /><br />As to #2 - I don't quite get why what she said was so terrible. She appeared to me to be saying that it isn't important what he achieves in terms of mainstream success, because he's fine just the way he is. And I think it's significant that she said he "may" not be the next Gretzsky - which allows for the possibility that he may.<br /><br />As to #3 - I agree that what she said was ridiculous. My gut tells me she didn't mean it exactly like that, but was instead speaking about how it affects her personally, but it's out there and I'm not going to defend it.<br /><br />But putting aside 1-3, I do want to move on to #4 and #5. You know that I have two kids with special needs - a daughter with CP and a son with Down syndrome. I can tell you from my own experience that the parent mindset is very different between the two diagnoses. A lot of people don't know what CP is, and few who don't navigate the CP world can recognize and identify it when they see it. Down syndrome is different - most people can identify a kid with DS, even if they don't know much about it.<br /><br />And here's the kicker...the thing about kids with DS is that you get two distinct reactions - the people who look at your kid and wonder why you didn't abort, and the people who have positive associations with kids who have DS and show it. Sometimes strangers smile at Nathan in a way that tells me they think he is A-W-E-S-O-M-E with a capital A BECAUSE of his DS, not in spite of it. They are drawn to him like a fly to honey, and I know they aren't feeling pity. We never experienced that with Sarah Kate - lots of people smile at her, but the ones who smile enthusiastically are usually the people who know her and appreciate her spirit. Others are just uncomfortable with disabilities, and it shows (until they get to know her :) ) - I imagine that's the experience you've had with Max, as well. Just know that there is a segment of the population that are enthusiastic special needs smilers!<br /><br />While I don't think Palin's piece was perfect (and I don't want her to be our president), I don't think what she wrote was worthy of disdain.<br /><br />Have a great weekend! You know I love ya!Andi @ BringingtheSunshine.comhttp://www.bringingthesunshine.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-3175707738283136052012-02-10T09:52:14.837-05:002012-02-10T09:52:14.837-05:00If you're going to take on the responsibility ...If you're going to take on the responsibility of holding someone accountable a tough love approach is always the best way to go. Helps the one you are holding accountable not feel attacked and like you genuinely care about that person and what you are holding them accountable for. Yes, I agree in that this may have been more 99% tough and 1% love instead of an equal balance of tough and love. However, honesty is the best policy and that's what you were here...honest about how you feel about this particular essay which you are also entitled to just as Palin is entitled to her feelings as unfortunate as they may seem to you. If nothing else at least this post can help each of us evaluate our stance on the golden rule when it comes to how critical we are of other parents of children living with special needs: "Do unto others as you would have them do unto you."Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24304982251403306662012-02-10T09:31:21.040-05:002012-02-10T09:31:21.040-05:00I've been reading your blog for quite sometime...I've been reading your blog for quite sometime, and I am very disappointed in your post about Sarah Palin. I am not a Palin fan, but your post is catty and mean spirited. <br /><br />One of the things that I have loved about your blog is that you point out how much special needs parents have in common. Who better understands what a special needs parent goes through more than another special needs parent? <br /><br />The only things we know about Sarah Palin's life are the things we hear through the media. Some things may be true, and some may not be an honest account ofher life. No one is perfect, and everyone learns to accept their child's diagnosis at different times, and people end up on different levels. To publicly pick on someone who isn't where you think they should be, doesn't make sense. No one is perfect, everyone has room for improvement. <br /><br />The world looks at our kids differently because they are different. I am my son's number one advocate. I push for inclusion. Do I want people to see, and respect, what he can do? Absolutely! But, you know what? I want them to see the things that are difficult for him too. As much as I want the Elementary School to include my son in the "General Population", I want them to know that exceptions that need to be made too. For example, when they get the entire school together, in one place, for a rally, I want them to know that accommodations may need to be made for my son. If he gets up, and wants to take a break, I do not want someone to tell him to sit down and watch the rally. When the school goes on a field trip, I want my son to have an aide, all to himself. In the special needs world, we call it "making accommodations", because it's not routine, or "normal". Normal for us, yes. Normal for the rest of the world, no.<br /><br />The article that you picked apart was not written with other special needs parents as the target audience. It was written for the masses. Sarah Palin didn't volunteer to be a special needs parent. I have friends that are heavily involved in the DS community, that have been very upset that she hasn't written more about life with a DS child. She writes something, and people tear it apart. She can't please everyone.<br /><br />We all do things differently. You have written about things that you do with/for Max, that I would never do for my son. Does that make them wrong? We could probably all look at each other and see things that we would love to incorporate into our "strategy", and things that we believe are glaring errors. It's that way with anything in life, special needs parenting just magnifies things.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-77377949059463860942012-02-10T09:13:52.326-05:002012-02-10T09:13:52.326-05:00The morning after - I'm going to eat a little ...The morning after - I'm going to eat a little crow here: I might've been too hard on her. If this had been a random blog post by Susie (I don't know any Susies. If you are a Susie, my apologies) I would have skimmed it and moved on. I still find her pride in others' smiles wierd, the whole thing rather awkward, & I wouldn't have added her to my reader, but that'd be the end of it. <br /><br />Any writing about kids, esp kids with SN, can be a keg o'dynomite. Too positive & you're not being honest. Too gritty & you're blind to the joy & may even not love your kid. Most blogs I read take years & hundreds of posts to navigate through the highs & lows to (hopefully) present a clear picture. Only to discover the kids have moved on to some new developmental phase & you have to start over. She tried to summarize a whole life in one very short essay. <br /><br />But... BUT she & Santorum are public figures. They are defacto members of the SN "community" (if there is one) and then they take public policy positions on... I dunno... HEALTHCARE. I'll admit to a visceral reaction to anything she has to say and I don't want her "representing" what it's like to have a kid w/anything extra.krlrhttps://www.blogger.com/profile/14392064691347464660noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-91520876385769392672012-02-10T04:17:55.220-05:002012-02-10T04:17:55.220-05:00Great post Ellen...and right on target.Great post Ellen...and right on target.Celia and Leohttps://www.blogger.com/profile/04605391238515987002noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-40112383754981356612012-02-10T01:03:40.128-05:002012-02-10T01:03:40.128-05:00I followed your link and read Palin's full art...I followed your link and read Palin's full article, and I actually thought that, overall, it was quite positive and loving. (And more eloquent than I would expect, considering the source...)<br /><br />Nonetheless, you do make some thoughtful points in your post. I have one to add: Trig is nearly four, yet she references his "baby food." He's not a baby, and his pureed food need not be referred to as such. My daughter is nearly five, and it bugs me that children her age think she is younger than they. We probably all have "hot button" types of words or phrases that annoy us.Andreahttps://www.blogger.com/profile/13546347150603853508noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4352537863645924792012-02-10T00:05:12.243-05:002012-02-10T00:05:12.243-05:00Ellen, I would disagree with your critics here and...Ellen, I would disagree with your critics here and say that you were too kind! I think you're perfectly correct in taking to task a person with such a high profile as Sarah Palin. How wonderful it might have been to have a truly unique and intellectual article (befitting someone who could actually have been the vice-president of this country)that might have expanded people's perceptions of parenting children with disabilities. I think that's partly a reflection of substandard journalism and the inability for most mainstream media to go beyond the superficial and partly due to the fact that Palin is not the brightest bulb on the earth and doesn't appear to be someone that thinks outside of very narrow boxes.<br /><br />Thanks for a great, good-humored post.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12594142973934611882012-02-09T23:54:35.701-05:002012-02-09T23:54:35.701-05:00It's true, my compassion got blindsided. I rea...It's true, my compassion got blindsided. I realize full well that the journey to acceptance is long, and that we are all at different points in that journey. But I strongly believe that it is deleterious to Trig (and other kids with special needs) to be presented as not "normal" and it is that attitude that gets to me. Never, even in my darkest moments of despair when Max was younger, would I have described Max to anyone that way. I don't doubt Palin loves Trig, but I do think that—again, as a major public figure—she has an obligation to consider how she presents him to the world. I hold her accountable for that, even if she is a fellow mom of a kid with special needs. Palin has an opportunity to do real good for our kids, and I didn't see that in this essay or otherwise. Referencing kids with special needs as not being "normal" only widens the already considerable gap that exists between our kids and others.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89437204570595380022012-02-09T22:47:38.348-05:002012-02-09T22:47:38.348-05:00I have been a long time reader of your blog and ge...I have been a long time reader of your blog and generally love what you have to say. In this case, I think you are way off base. <br /><br />It is so easy to look at another Mom and pick her apart because you would do things differently, don't agree with her decisions or just think she isn't acting "right". It takes a lot of compassion and empathy to look at another Mom and accept that she is doing the best she can in the moment. <br /><br />We all face our child's diagnosis and disability in our own way and on our own timeline. Just because she's doing things differently then you would like doesn't make her wrong. Personally I give her credit for having the courage to stand up to all the criticism she faces no matter what she says.Leighnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52072511848815245752012-02-09T21:05:28.320-05:002012-02-09T21:05:28.320-05:00I'm a regular, long-time reader (and not AT AL...I'm a regular, long-time reader (and not AT ALL a Sarah Palin fan), but I thought this blog post was very catty and mean. Stomping on another mom of a special needs child because she doesn't speak/think the way you do? NOT COOL. <br /><br />How would you feel if someone took one of your blog posts, dissected and "corrected" it, and then insulted your looks on top of it? Wow. Just...wow.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89542886355672389292012-02-09T19:09:53.127-05:002012-02-09T19:09:53.127-05:00Great post Ellen! And I believe I have taken it in...Great post Ellen! And I believe I have taken it in the tone you intended - pointing out a few areas of her essay that weren't as supportive of her child as they could have been while keeping a light tone. Thanks!Jana Weaverhttps://www.blogger.com/profile/11492118205706353318noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-34018171275041707102012-02-09T17:20:36.334-05:002012-02-09T17:20:36.334-05:00I think your over reacting....I think your over reacting....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72011752897441936752012-02-09T15:09:22.088-05:002012-02-09T15:09:22.088-05:00This is not what I would expect to read on a blog ...This is not what I would expect to read on a blog that is supposed to support parents who have children with special needs. None of us is perfect, even you Ellen. Let us not judge each other but love and encourage each other.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16387579615733980282012-02-09T14:27:48.838-05:002012-02-09T14:27:48.838-05:00I don't think criticizing other parents for ho...I don't think criticizing other parents for how they delt with a childs diagnosis is cool at all. Everyone takes things differently and I for one am always relieved when I read that someone else was actually disappointed like I was! I love my son to death but that doesn't mean that everyday I don't wish things were going to be easy and yes, normal for him...or that he could be a star running back one day, or a nuclear physicist! It's ok for me to grieve the things he won't ever be, like Wayne Gretzky...that doesn't mean I won't be crazy proud for everything he DOES accomplish though. I don't know, I guess I just think acknowledging that my son with, Down Syndrome, is actually not ”normal” is not a bad thing. It doesn't make me not appreciate all that is by acknowledging all that he isn't...<br /><br />I think her article showed she loves her son and she is handling his challenges the best any of us can. Picking apart other families struggling and judging their every word isn't helpful to any of us and just makes you seem like you think you are a superior special needs mommy...public platform or not...Anonymousnoreply@blogger.com