tag:blogger.com,1999:blog-22878815.post2240996989155810177..comments2023-10-21T06:18:41.537-05:00Comments on Fighting Monsters with Rubber Swords: "Beneath those stars is a universe of gliding monsters."Robert Hudsonhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-22878815.post-4563324464556563852017-04-21T15:04:05.567-05:002017-04-21T15:04:05.567-05:00My 8 year old has been in remission from a rare an...My 8 year old has been in remission from a rare and aggressive cancer for 3 years. To paraphrase Gen. Sherman, cancer is cruelty and you cannot refine it. I agree with you - I love my girl and I wish it had never happened. It didn't make her a "warrior" - it damn near killed her. We are still picking up the pieces.Evelyn Krache Morrishttps://www.blogger.com/profile/14263433417919865654noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-39335302862712219382016-01-14T12:39:29.711-06:002016-01-14T12:39:29.711-06:00"If anything, I am more like Captain Ahab, fi..."If anything, I am more like Captain Ahab, fighting obsessively against a monster that I can never defeat. Like Ahab, I am aware of the futility, but I am also unable to turn away." Wow, beautifully written. I relate to every word and appreciate your thoughts and perspective. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-75606777301136952182011-03-18T09:03:50.811-05:002011-03-18T09:03:50.811-05:00Good for you, Rob. In my opinion, it's akin to...Good for you, Rob. In my opinion, it's akin to someone claiming they love their cancer or that cancer is their identity. It's insulting to those who endure the condition, whatever it may be. But the number one point here is, this is your life, your family, and your choices. No one has the right to tell you how to live your life. It's also, I might add, YOUR BLOG. It's how you sort out how this affects you. Maybe you never share this blog with your daughter, or maybe she'll never give a damn what you've written on here.Loves Pickleshttps://www.blogger.com/profile/09265109812385130053noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-630002453900330112011-02-23T21:23:41.370-06:002011-02-23T21:23:41.370-06:00I'm a new reader of yours, and this post made ...I'm a new reader of yours, and this post made me a "follower."<br />It's simply one of the best I've read on the subject. It's still with me...days on.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-70809705303649647642011-02-09T18:03:16.260-06:002011-02-09T18:03:16.260-06:00I can never eloquently express how much some of yo...I can never eloquently express how much some of your posts mean to me (and sometimes that means I don't comment) but...this post was fantastic. Especially the part about that Holland story. But really all of it.Marlahttps://www.blogger.com/profile/16809949267562980590noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-41127808826624719912011-01-31T17:41:37.134-06:002011-01-31T17:41:37.134-06:00Bravo for your honesty. I have found myself not w...Bravo for your honesty. I have found myself not wanting to blog much lately because I have similar thoughts as you about my son's autism. I find myself qualifying each slight movement to 'go there' with the 'oh, but make no mistake that I love my son dearly' ending. Sometimes I just want to be honest and say that it sucks and it's scary and I h-a-t-e it. Thank you for being confident enough to do that.Mama Debhttps://www.blogger.com/profile/08381495916734086130noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-79045987678706129592011-01-30T18:15:00.295-06:002011-01-30T18:15:00.295-06:00traveller13:
I thank you for your comment, and I ...traveller13:<br /><br />I thank you for your comment, and I respect your opinion. This topic comes up from time to time, and since I think it deserves to be revisited periodically, I'm going to address it in a separate blog post instead of here. I'll be posting that response shortly.Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-85203709765119299852011-01-30T14:54:36.462-06:002011-01-30T14:54:36.462-06:00I personally disagree with your use of the term &q...I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent.<br />I don't think most people (with the always exceptional minority of crazies) would argue this point with you out of spite or with the goal of proving you wrong but rather out of concern for your daughter and a hope that sharing one's own experience can make a difference in the life of another child and family going through a familiar struggle.<br />However, there is no point arguing about it as only time will tell how your daughter will feel about it. I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate.traveller13https://www.blogger.com/profile/11716998647845660231noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-3572561752299005782011-01-26T21:51:35.687-06:002011-01-26T21:51:35.687-06:00As a mom of a child with spina bifida i would do a...As a mom of a child with spina bifida i would do anything in the world to get rid of it. yes, i want her to know no pain, no teasing and no more freakin drs. I dont get the people that say "i wouldnt change my daughter for anything." um i would. let her be healthy! whats wrong with that?Nechamahttps://www.blogger.com/profile/17645961324949863687noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-75943246456001972612011-01-25T19:39:24.688-06:002011-01-25T19:39:24.688-06:00(In response to a comment that no one will ever se...(In response to a comment that no one will ever see, alas...)<br /><br />Funny; I thought I was clear:<br /><br /><i>"I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason."</i><br /><br />I'm not sure why you'd go to all the trouble to type out a comment that you know I'm not going to post, rather than sending me an email.<br /><br />Oh, wait. Anonymity, that's right. Only someone with the courage of their convictions and a sense of self worth would actually send a message with their name attached. Sad little drive-bys are for comments, even the ones that will never be posted.<br /><br />Got it. Thanks.Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-52347427750541055442011-01-25T16:11:31.214-06:002011-01-25T16:11:31.214-06:00Then there's us who sit on either end of the a...Then there's us who sit on either end of the autism spectrum that just detest those ND'ers.<br /><br />The elder has never been told, and is now with a dx of mild NLD.<br /><br />The younger... I wouldn't wish severe autism on anyone. Why anyone would claim it "wonderful or glorious" is beyond me. We slog through it daily and if someone handed me a magic pill for him tomorrow... he'd be taking it.farmwifetwohttps://www.blogger.com/profile/02680758336779501712noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-15253604934682667662011-01-25T07:40:41.358-06:002011-01-25T07:40:41.358-06:00My comment will not be nearly as good as Shaggy...My comment will not be nearly as good as Shaggy's (I'll admit I was tempted to write 'ditto') but I'll acknowledge this is something I've struggled with. The crowds on the message boards that wouldn't change a thing about their child and that DAMN Holland poem on one end of the spectrum and the simple facts that my girl (who has down syn) does have cognitive delays, did require open heart surgery, and will always be immediately recognizable as a member of her club on the other end. The lure of "different not better" is tempting. I desperately want her to be accepted and loved for who she is. And who she is is literally programed at the cellular level. Absent that extra chromosome she would be a different person - it's that simple. But absent that extra chromosome she would not have had two surgeries (w/the 3rd scheduled*), she would not be at higher risk for leukemia & early onset alzheimers, and we would not be talking IEPs tomorrow. Probably not. Something else could have gone wrong along the way too. But as Shaggy noted, this WILL affect her life expectancy.How do you love someone so unreservedly and yet object to their cellular makeup? I simply don't think there's an answer. <br /><br />[*Lest I sound overly dramatic, the 2nd & 3rd surgeries are minor eye fixes, not life threatening stuff].krlrhttps://www.blogger.com/profile/14392064691347464660noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-69529453544273859882011-01-25T06:29:59.595-06:002011-01-25T06:29:59.595-06:00I think you manage a tricky dynamic that could be ...I think you manage a tricky dynamic that could be difficult for many parents. You identify the disability with the provocative "Monster" label and fight it like the dickens, BUT you also simultaneously maintain a healthy positive attitude towards your child, celebrating and loving who she is. It would be so easy to let that frustration and fight to pervade your child's life so the child winds up feeling SHE is the monster. And life sucks!<br /><br />I do wonder what Schuyler will say when she's older and thinks critically about how others (especially parents) perceive her and define her (or her disability). Well, that's one of the trials of parenting- try your hardest and still get told you screwed up!JLH114https://www.blogger.com/profile/10422430076127779117noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-9444741400836106222011-01-24T14:45:57.976-06:002011-01-24T14:45:57.976-06:00also, schuyler is not her syndrome. she has an ide...also, schuyler is not her syndrome. she has an identity in addition to her medical problem. god, people are really dense sometimes.yellowfattybeanshttps://www.blogger.com/profile/03038700430931357809noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-91760847167555546572011-01-22T18:20:38.269-06:002011-01-22T18:20:38.269-06:00Well said, Rob. I have always had issues with the ...Well said, Rob. I have always had issues with the term "Aspie" (used to refer to a person, usually a child, with Asperger's Syndrome) for similar reasons. My kid with Asperger's Syndrome is not an "Aspie." He's a kid. Who has Asperger's. Which makes his life harder than it needs to be and which I therefore do not find cute.MFA Mamahttps://www.blogger.com/profile/11052734298141262385noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-26344863677732622522011-01-22T05:53:05.588-06:002011-01-22T05:53:05.588-06:00Um, that was just a song title, and I used it beca...Um, that was just a song title, and I used it because Schuyler loved that song. It's something we still reference together, I just don't reference the song here for legal reasons.<br /><br />So you might have to take it up with Schuyler...Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-84274722190784529362011-01-22T00:25:06.988-06:002011-01-22T00:25:06.988-06:00Schuyler is who she is despite her monster. Same ...Schuyler is who she is despite her monster. Same as all our kids who deal with crappy, serious things that aren't going away.<br /><br />I've been meaning to say for a long time that I was glad when you started referring to Schuyler's PMG as the "monster" instead of Schuyler herself as being the "monster". I would never have commented about it while you did it because that was your choice and your way of dealing, and I understand why you could relate those lyrics to Schuyler and your relationship with her. It's a warm, catchy song, and you always did it in a loving, devoted way. Still, that monster wasn't Schuyler, and it wasn't the monster who was beloved! It's funny how our thinking evolves with time. I think it's a much more accurate analogy the way you're using it now. I can really relate to calling our kids' godawful conditions "monsters".Paulahttps://www.blogger.com/profile/17987801665668717669noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-78661210283120842042011-01-21T23:55:18.503-06:002011-01-21T23:55:18.503-06:00Sarah and ShaggyDaddy, I'm really glad you pos...Sarah and ShaggyDaddy, I'm really glad you posted comments, thank you so much for your perspectives. Sarah, I've been reading your blog tonight, and I have to say, I love your writing. I'll be watching your work with great interest.Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-14085373057632391692011-01-21T17:53:45.911-06:002011-01-21T17:53:45.911-06:00Thanks so much for writing this. I think ShaggyDad...Thanks so much for writing this. I think ShaggyDaddy's point is a good one. There is a qualitative difference between disabilities like high-functioning autism and those like polymicrogyria. <br /><br />The most important difference, I think, is where the suffering comes from. Many people in the neurodiversity movement (and I count myself among them; my son is autistic) would argue that a good part of the suffering of people with "milder" forms of autism is caused by the way our society treats people who are different, and our failure to make reasonable accommodations. The disability itself, in these cases, does not necessarily cause physical suffering, reduced life expectancy, severe impairments in mobility or ability to communicate, or intellectual disability. <br /><br />Of course, we're all different. Many people with autism do experience physical suffering as a direct result of their disability [as opposed to the way society responds to it], but some do not. <br /><br />I don't feel like I want to cure my son's autism, but it's very easy for me to say that when, so far, his autism amounts to some sensory processing issues and slightly atypical language development. I don't mean to trivialize it, but let's be honest — it's not on the same plane as polymicrogyria or a whole host of other disabilities, and to imply that they're the same is both intellectually dishonest and incredibly disrespectful.<br /><br />I think it's the right of each person touched by disability to perceive it however they choose. As you pointed out, it's not the kind of ideological position that a debate is going to sway anyway — it's a gut response to our own set of experiences.<br /><br />And it is truly absurd to try to impose that ideology on anyone else. I think people who attempt to do so are reacting to a lifetime of feeling underestimated and misunderstood, but at the same time they are failing to understand that not everybody's experience mirrors their own.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-67861829372119844072011-01-21T17:22:47.873-06:002011-01-21T17:22:47.873-06:00This comment has been removed by the author.Julia O'Chttps://www.blogger.com/profile/16330856629856439993noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-65863683005380634402011-01-21T16:34:13.218-06:002011-01-21T16:34:13.218-06:00Speaking as the mom of a kid with autism, i could ...Speaking as the mom of a kid with autism, i could substitute that word for Polymicrogyria and say every word of what you're saying here. it's not a popular opinion - and I HATE that Holland poem - but it's how I feel. If I had the chance to meet and raise my amazing, awesome son without the barriers and problems that his autism has created, my god, there's not a thing on this planet that I wouldn't give up for it. <br /><br />As always, Rob, I'm grateful that you're writing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-79294535589028704802011-01-21T16:30:21.360-06:002011-01-21T16:30:21.360-06:00My wife and I have had to battle our own monster -...My wife and I have had to battle our own monster - she has temporal lobe epilepsy - which was fairly benign at first then started to chew larger and larger lumps out of our life. We never, EVER, accepted that it was part of her, just an adversary that had to be fought at every turn.<br /><br />We were lucky, in that a knight in shining armour was able to battle her monster into quiescence (she had brain surgery which has almost totally suppressed the epileptic seizures) but we know a number of people who still have their own monsters to fight, and almost none of them accept the monster as defining who they are, and I have to say I feel sorry for the ones who DO accept it in that way. Keep fighting - Schuyler is, and always will be, very much other than her monster.divinerhttps://www.blogger.com/profile/09275177966778116948noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-49469935474108815472011-01-21T16:20:44.911-06:002011-01-21T16:20:44.911-06:00Love this. Thanks for writing it.Love this. Thanks for writing it.daisyjo21https://www.blogger.com/profile/01418478199076709949noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-59646421667467651492011-01-21T16:14:53.057-06:002011-01-21T16:14:53.057-06:00The Neurodiversity movement is very new, and like ...The Neurodiversity movement is very new, and like all new movements tends to over-compensate for a mainstream view of infinite inferiority, often to the point of absurdity. As a somewhat rabid, yet still intellectually reasonable member of the Autism community I can really understand the conflict of ideology here.<br />Autism crusaders easily band with Deaf culture advocates because they tend to both have the same message-- different, not worse. But, you know, that is really easy when you are talking about disabilities that come with no change in life expectancy, and comparitively small long-term cognative and even social implications. <br />That is where it gets complicated. Autism advocates, especially Neurodiversity oriented ones will see this wonderful girl who uses AAC, who cannot speak like everyone else, who has some social difficulties and they say "ah ha!" I know her struggle, and her father is wrong to call her brain broken. They are contending with 50 years of repressive mis-categorization of Autism; and they are inadvertantly taking it out on you. Perhaps they forgot to read your book, but most likely they are having trouble seeing past their own struggle. You are highly relatable in your writing and your struggle, and sometimes the culture overlap has some spillage. It is unavoidable, the confict, and I really appreciate you talking about it, because it is important to disability culture as a whole, to make these kinds of distinctions.<br /><br />We know so much about each-other's struggles, yet there is still so much more to learn.PB Sutherlandhttps://www.blogger.com/profile/02977429247378282477noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-52733058670419510382011-01-21T15:53:00.912-06:002011-01-21T15:53:00.912-06:00Thank you for writing that. I never questioned why...Thank you for writing that. I never questioned why you call it her Monster because, like you, I can picture it that way. I see your beautiful, unique girl being followed by a big hairy, toothy monster, and I think if she were my child, it would help me to put a face to the monster (a big hairy, toothy face), so that I would have a visual to hate that isn't attached to my daughter. I could never look at my daughter and hate a bit of her even if it is broken, but something that follows her around (even just in my mind) and causes her pain & trials I can hate. (Does that make sense?) <br />I've often wondered why you chose "Monster" and now that you've explained it I think it fits rather well.<br />I'm sorry that you get such rude and unfeeling comments and I wish you all the best! (PS: Your daughter is beautiful!)Alice Fragglehttps://www.blogger.com/profile/04009130427995457826noreply@blogger.com