tag:blogger.com,1999:blog-5554498168264477884.post438314496788751632..comments2023-09-26T03:53:17.142-04:00Comments on Pentimento: Catholics with ASD Children and the Pro-Life Movement [UPDATED]Pentimentohttp://www.blogger.com/profile/17161146891505294679noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-5554498168264477884.post-21969045530870669072014-05-24T23:52:20.389-04:002014-05-24T23:52:20.389-04:00Ack. You can come to my house. I can't say I ...Ack. You can come to my house. I can't say I can relate becauseI can't. I have 4 relatively typical kids although one of my twins is a bit "odd" but not off the charts odd and who has celiac like me. My husband worries she could be autistic although I've told him time and time again that she isn't. I think that's the problem of not really understanding it and not wanting to "get it on you" as you say. That you then worry about your own kids when they do anything out of the ordinary. I was a home care respite nurse and a pediatric case manager so I've seen some kids with PROFOUND disabilities who made me cry. And other kids with severe ASD who were downright sweet but dangerous as well as high functioning ASD kids who, it seems, like your son, would sometimes "surprise" you. It was an education I didn't get in school and it was my privilege to help. But I still could never understand what it's like to be in the shoes of a parent with a "diagnosed" child. I only have a glimpse into what it's like. I'm saddened that they don't embrace you or even, it seems, make an effort at your church. Isn't that supposed to be a hospital for the hurting? Liz Hhttps://www.blogger.com/profile/00671139390594025788noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-90607748693722025862014-05-16T20:31:54.387-04:002014-05-16T20:31:54.387-04:00Thank you for commenting, Anonymous. Your perspect...Thank you for commenting, Anonymous. Your perspective is very much appreciated. <br /><br />My son joined a small boys' choir this spring, and their concert was tonight. One of the choirboys -- one of two who have been friendly to him -- told me that the other boys had said "really mean" things about my son. My heart sank, but it's no surprise. That social shunning even extended to me -- none of the other moms spoke to me all spring, including tonight (I should add that my son, who's the youngest choir member, is as good a singer and musician as all the others).Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-46954056429082565052014-05-16T16:23:51.543-04:002014-05-16T16:23:51.543-04:00Hi, I'm a 21 year old female and I am borderli...Hi, I'm a 21 year old female and I am borderline for aspergers syndrome. I agree with previous posters, the closer you are to normal the more surprised it makes people when I miss the mark, they generally think I'm being rude or worse if they see my errors and don't know or don't believe me when I say because "you're so normal!" <br />I've had to make a deliberate effort to learn social skills and still haven't "got it" people with autism want friendship but have no idea how to get it or maintain it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-90024723101269407092014-03-09T17:36:38.740-04:002014-03-09T17:36:38.740-04:00That's a wonderful article, one of the best th...That's a wonderful article, one of the best things I've read in a long time. Thanks for sharing it, Maureen.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-80205059211283793152014-03-09T16:40:25.147-04:002014-03-09T16:40:25.147-04:00i just saw this feature in today's Sunday Time...i just saw this feature in today's Sunday Times -- <br /><br /><br />Reaching My Autistic Son Through Disney http://nyti.ms/1qfA9RNMaureenhttps://www.blogger.com/profile/03580856325657683194noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-33017261764169313642014-03-09T07:37:37.328-04:002014-03-09T07:37:37.328-04:00Thank you, Maureen. I'm grateful for your pray...Thank you, Maureen. I'm grateful for your prayers.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-47500692591210911412014-03-08T19:48:54.793-05:002014-03-08T19:48:54.793-05:00My family was regarded as "strange" and ... My family was regarded as "strange" and subsequently avoided. I grew up thinking there was some sort of an aura of weirdness around me that everyone else could see but I could not. I coped by withdrawing.<br /><br />I know you will not let that happen with your son. I'll ask my Aunt and her community to pray for you both. I will pray too!Maureenhttps://www.blogger.com/profile/03580856325657683194noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-45557382985532161002014-02-18T16:30:34.385-05:002014-02-18T16:30:34.385-05:00No need to apologize, I'm happy for the hijack...No need to apologize, I'm happy for the hijacking. Thank you for the book recommendation. It's on my Amazon wishlist now.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-13829041709928359522014-02-18T14:57:52.125-05:002014-02-18T14:57:52.125-05:00+JMJ+
Now it's my turn to beg Pentimento'...+JMJ+ <br /><br />Now it's <i>my</i> turn to beg Pentimento's forgiveness for hijacking her thread, but now that you've pointed out the "pagan-ish" aspect of self-checks and other modern rituals, I wanted to pass on a quotation which a friend of mine recently shared with me. We were talking about global warming--specifically the idea that we can and should control something like the climate of a planet--and he pulled this line from a book he has been reading: <br /><br />"The great pagan sadness of modern man is largely due to his premonition of ultimate disaster." -- Erik von Kuehnelt-LeddihnEnbrethilielhttps://www.blogger.com/profile/03414765854670926854noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-14277352989768467212014-02-18T14:41:50.525-05:002014-02-18T14:41:50.525-05:00Sorry to be back so soon after apologizing for thr...Sorry to be back so soon after apologizing for threadjacking! But I come with an offering this time, very relevant to the topic. For you, Pentimento, and any other parents of children with autism, I heartily recommend this book of poems: <br /><br />There Will Be Cats<br />by Aileen Murphy<br /><br />https://finishinglinepress.com/product_info.php?products_id=850<br /><br />(used copies also widely available at online booksellers) <br /><br />Aileen Murphy teaches poetry and creative writing at Virginia Tech University. <br /><br />Here is a lovely review of the book and intro to the poet (with whom, like the reviewer, I am acquainted): <br /><br />http://www.denverpost.com/ci_12267058Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-63903414798143669502014-02-18T12:46:21.234-05:002014-02-18T12:46:21.234-05:00Enbrethiliel:
Thanks for your kind words.
You b...Enbrethiliel:<br /><br />Thanks for your kind words. <br /><br />You bet those monthly self-checks have the power of religious ritual, in a strange and rather pagan-ish way. Especially after you've been through a round of treatment for BC and are hoping it never comes back. I got kind of messed up with an irrational aversion to doing the checks because the thought of finding something was so anxiety-producing. I was close to contacting a therapist to work it out, when I found out that the BC came back all right, but not in the breast, so the self-checks wouldn't have found it anyway. Anxiety is almost always a wasted emotion, isn't it? Oh well. <br /><br />I fear I may be committing a little thread-jacking here, so I apologize for that. To bring it somewhat back to Pentimento's topic, and to answer her question, yes, I'm American. I agree about that belief that we can control our destiny, and I don't even think it's a "sneaking suspicion" or a "dirty little secret," but is more openly embraced than that, even among Christians. (I'm not Catholic, but Orthodox, and I think you and I are pretty much on the same page about this.) We have the mix of American individualism, the hubris inherent in that, and our deep fears about what we can't control. So our prideful individualism reacts to the fears with contempt for those who suffer what we fear, and we seem to think that we'll magically repel those outcomes in our own life if we sufficiently despise them and can find reasons to blame other people's choices for their own suffering. <br /><br />But I guess I'm beginning to repeat what you've already said here. I'm sorry for the isolation you've experienced, Pentimento, and will pray for your family. You've also given me some insight that I hope will help me to better understand and love families I know that include children on the autism spectrum.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-4665015919438739492014-02-18T10:44:33.034-05:002014-02-18T10:44:33.034-05:00Thank you, Janet. It's not Jude, actually; it&...Thank you, Janet. It's not Jude, actually; it's my older son. I hope your grandson and his parents have the supports they need. Is it a new diagnosis? You can email me if you want to continue the conversation out of the combox.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-84648712623095280002014-02-18T10:35:00.720-05:002014-02-18T10:35:00.720-05:00Thanks for the link.
My 7 year old grandson has b...Thanks for the link.<br /><br />My 7 year old grandson has been diagnosed as being somewhere on the autism spectrum (such a confusing term). He also is high functioning--probably about the same level as Jude from things that you have said about him. I'm sorry you haven't found any support. I'll pray for you to find someone. <br /><br />AMDGJanet Cupohttps://www.blogger.com/profile/01037555111680888247noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-1396271032341428852014-02-18T08:15:56.278-05:002014-02-18T08:15:56.278-05:00+JMJ+
Anonymous -- I'm so sorry about what y...+JMJ+ <br /><br /><b>Anonymous</b> -- I'm so sorry about what you're going through, but heartened to hear that you have such a compassionate and understanding oncologist. <br /><br />I think your analysis of the role of awareness campaigns is right. This seems to be rooted in the fairly modern idea that "education" can save the world. What an utopian--and ultimately unrealistic--ideal! <br /><br />You're also on to something with that religious imagery. For now that you mention it, these regular self-checks <i>do</i> have the air of a religious ritual. Perhaps not in and of themselves, but I have heard at least one woman attribute superstitious power to it. One must appease those gods, after all! I guess this makes women who do have breast cancer the human sacrifices whom we can afford to lose. Enbrethilielhttps://www.blogger.com/profile/03414765854670926854noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-36123777325045621982014-02-17T23:28:23.966-05:002014-02-17T23:28:23.966-05:00P, I've mentioned to you before my good friend...P, I've mentioned to you before my good friend whose adult daughter is profoundly developmentally disabled -- that is, I guess you'd say, "profound." She is mobile, and somewhat verbal, but at 26, she's a forever 2-year-old, and very, very obviously a "special" person, as they say. <br /><br />So, people respond to her overtly positively -- almost guiltily positively; certainly sentimentally positively; maybe even self-congratulatorily positively -- because her disability is so apparent. She can wander up to a stranger's birthday party and come away with cake, a balloon, and a goodie bag. People in the grocery store slip her money. That kind of thing. <br /><br />My friend says she's given up trying to stop it, though she also adds, "They don't realize they're creating a monster. I'm the one who has to live with the person everyone gives things to all the time." Sentimentality does no one any real favors, least of all the object of the sentimentality. <br /><br />And I don't know about isolation in their case -- my friend and her husband both come from large families, and this daughter is one of many siblings, so there's been some buffer between them and that really crushing loneliness. They're kind of their own self-sustaining tribe, though life was probably much harder when even the oldest kids were little, and there wasn't anyone else at home able to keep up with this particular daughter. Still, it's hard for them even now. I'm keenly aware, for one thing, of the fact that I'm not lying awake worrying what's going to happen to any of my children should they outlive me. <br /><br />It's a grace that I'm able not to feel really frivolous and trivial beside my friend, who's also had a baby die in the time that I've known her . . . it occurs to me now that maybe people do shrink inside themselves because they feel that in the presence of someone dealing with a level of difficulty, or a kind of difficulty, not their own, they have no right to find anything hard in their own lives, or that anything they say or do is going to come across as ridiculously privileged or silly, because they don't bear that burden of concern. That in itself is a silly kind of self-consciousness, even pride, but I think it's one that many people, including myself, innately feel sometimes. <br /><br />My friend would also recommend Our Lady of Sorrows to you. And yes, I've heard Immaculee speak -- and she once responded to me on Twitter, when I'd happened to mention to someone how inspirational I found her. She just radiates greatness of spirit. And I too love that image of Mary running to our side when we call on her. Sally Thomashttps://www.blogger.com/profile/05014351173194941624noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-2180899910249738312014-02-17T21:46:18.860-05:002014-02-17T21:46:18.860-05:00Thank you SO MUCH for this comment, Elizabeth.
Yo...Thank you SO MUCH for this comment, Elizabeth.<br /><br />You've suggested this devotion before, and I actually started saying the rosary of Our Lady of Sorrows (sporadically) a few months ago after hearing Immaculée Illigibiza speak. Immaculée spoke at length about this devotion, and she had a rosary of OLS wrapped around her hands as she gave her talk. (She is an absolutely charming person, the kind of person you'd want to be your best friend, and in her presence you really feel that God is using her for great good.)<br /><br />And thank you for the reminder to call on Our Lady. I love the thought of her running to my side, which has never occurred to me before.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-59383722999319306892014-02-17T20:36:30.525-05:002014-02-17T20:36:30.525-05:00Yes, I'm American. I agree about that belief t...Yes, I'm American. I agree about that belief that we can control our own destiny, and I don't even think it's much of a "sneaking suspicion" or "dirty little secret" at all. It's more like a proudly held principle, no less so among Christians than others. (I'm not Catholic, but Orthodox, so I think we're on pretty much the same page here.) It's so essentially American (tragically, in my opinion): that mix of individualism, fear, and contempt towards what we fear based on pride that tells us we're magically immune to what we fear if we despise it enough to exorcise it from our midst, to make it go away from us, magically. <br /><br />Funny how the same people who exhibit their belief that they can control their own destiny through these behaviors are also quick to complain that Others have thwarted them when they don't achieve what they want.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-21374026630974393892014-02-17T19:21:52.208-05:002014-02-17T19:21:52.208-05:00I love your blog, Pentimento, I just want to remin...I love your blog, Pentimento, I just want to remind you and anyone reading this (who has a disabled child) that you have as a patron our Lady of sorrows. At the presentation of our Lord, Simeon told her that her son would never be like other children, that he would be rejected and humiliated and that it would wound her to her core. When the other mothers don't understand, she will be running to your side just like she did for her cousin, Elizabeth. Because I share this name, when I pray the joyful mysteries I announce the second mystery as "Mary visits Elizabeth" to remind myself that she comes to me too, and I offer it in thanksgiving.Anonymoushttps://www.blogger.com/profile/08947741347246961922noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-88706989640428949462014-02-17T18:31:27.163-05:002014-02-17T18:31:27.163-05:00I agree with you, Anonymous, and, as you point out...I agree with you, Anonymous, and, as you point out, it's the same with the visceral repulsion many good Catholic mothers of typical kids appear to feel for children with ASD. I don't know if you're American, but the sneaking suspicion that we can control our own destiny is the dirty little secret of even orthodox American Catholics.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-77370362777664926612014-02-17T18:20:19.547-05:002014-02-17T18:20:19.547-05:00Thank you so much, Pentimento. I really appreciate...Thank you so much, Pentimento. I really appreciate your prayers and concern.<br /><br />No, we don't know each other IRL. <br /><br />Here's another thought that Enbrethiliel's story gave me: What if that terrible phenomenon of women blaming other women for BC is a twisted result of popular BC awareness campaigns? Not the fault of the campaigns themselves (though I have plenty of criticisms of the pinkification of BC, but that's another story), but one way that sinful people respond to information. Sort of a dark side of BC awareness, almost inevitable, perhaps, given human nature and the raw fear driving those women jurors. I'm thinking it may work like this: We consider ourselves all so very "aware" of BC now, so, well, if you have it, you somehow failed to have the correct level of knowledge, failed to perform the preventative rituals correctly, and you have angered the gods. So to speak. <br /><br />The insidiousness of this thinking is hinted at in the facile and self-contradictory slogan, "Early detection is the best prevention." No; if you have a tumor to detect, the disease exists; it has not been prevented. Sure, early detection can help prevent (or postpone) death, but <br />better methods are needed for actually preventing the disease. But I digress.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-23529088079467655722014-02-17T17:46:02.713-05:002014-02-17T17:46:02.713-05:00Thank you for weighing in, Anonymous.
I am prayin...Thank you for weighing in, Anonymous.<br /><br />I am praying for you. <br /><br />And I must ask: are you someone known to me IRL? I just want to make sure that if you are, I am reaching out to you in the right ways. And if not . . . I am praying for you and sending you real love.Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-67560277266753384302014-02-17T17:10:34.834-05:002014-02-17T17:10:34.834-05:00Pentimento: This post is very illuminating. You ha...Pentimento: This post is very illuminating. You have composed an excellent argument exposing the deadly nature of sentimentalism. I mean it; that stuff can be lethal. It's toxic waste dressed up in polite Church Lady frills. <br /><br />Enbrethiliel: Wow. That is depressing, and yet so believable. BTW, I have metastatic breast cancer. One of the first things my oncologist said to me when I got this diagnosis, before I'd even expressed any sense of self-blame, was: "It's not your fault. I see women blaming themselves for their cancer all the time, and it is Not Your Fault." He scheduled me to see the oncology clinic's psychologist without even asking me if I wanted to; he's that convinced that this is an issue that needs addressing. I'm glad he did.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-29083760033345530122014-02-17T07:21:22.123-05:002014-02-17T07:21:22.123-05:00I think you're right, E., and that's a ver...I think you're right, E., and that's a very cogently-put assessment.<br /><br />The conservative-religious people (I don't refer to Catholics specifically, more to the kind of Americanist conservative-religious ethos across sects) think: "Was it this man's fault or his parents'?"<br /><br />The liberal woo-type people think: you vaccinated your child; you didn't have a water-birth; you drank a soda while pregnant, etc. <br /><br />Both of these modes of magical thinking tread perilously close to the now-debunked theory popularized by Bruna Bettelheim -- that autism is caused by "refrigerator mothers" who subconsciously wish their children dead (Bettelheim treated autiism with psychoanalysis, which would be funny if it weren't so crazy).<br /><br />And both modes release the Good Parent -- either good because of faith and virtue, or good because of natural family living -- of the responsibility of true hospitality toward the suffering.<br /><br />It's not too different from pervasive American attitudes towards poverty, i.e., people are poor because they're lazy, stupid, selfish, addicted, and intrinsically bad, so why should I help them?<br /><br />If you are suffering because you have autistic children, ergo, why should I help you?Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-48033257205591010962014-02-17T06:36:12.964-05:002014-02-17T06:36:12.964-05:00+JMJ+
A paralegal I used to know once told me so...+JMJ+ <br /><br />A paralegal I used to know once told me something interesting about jury selection for trials in which women sue their doctors for malpractice after the latter misdiagnose the former's breast cancer. According to the paralegal, if you are representing the woman, the worst people to have on the jury are other women who are demographically similar to her. Because no matter how much evidence you have for the doctor's negligence, those jurors will still believe that the woman should have done <i>more</i> for herself. They will blame her for not figuring out on her own that she had breast cancer. <br /><br />The paralegal's analysis was that these jurors identify with such a plaintiff so much that they are terrified that what happened to her could happen to them. But instead of supporting her in her suffering, they scramble to argue that her suffering was preventable. That is, preventable by <i>her</i>. By rationalising that her suffering is a function of her choices and actions, they get to believe that the same things will never happen to them--because, of course, <i>they</i> would never make <i>those</i> choices or do <i>those</i> things. <br /><br />A friend of mine told me that he saw a similar dynamic among women neighbours after one woman's husband blindsided her with an affair. The other women preferred to blame the wronged wife for driving her husband away rather than contemplate that some things--such as a husband's character and choices--are simply beyond a wife's control. <br /><br />It seems to me that this is the sort of shunning which you are facing, inasmuch as a lot of people believe that autism is, to some extent, controllable. Enbrethilielhttps://www.blogger.com/profile/03414765854670926854noreply@blogger.comtag:blogger.com,1999:blog-5554498168264477884.post-66558678192099282852014-02-16T07:51:33.131-05:002014-02-16T07:51:33.131-05:00And then there's this:
https://ollibean.com/2...And then there's this:<br /><br />https://ollibean.com/2014/02/13/chalk-word/Pentimentohttps://www.blogger.com/profile/17161146891505294679noreply@blogger.com