tag:blogger.com,1999:blog-6942900775029495748.post5810995148487590376..comments2023-07-07T04:22:53.365-06:00Comments on Julie's Boyz: Awareness, Acceptance, Accommodations and ....Anonymoushttp://www.blogger.com/profile/13601329296517304013noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-6942900775029495748.post-26846162206591209432014-07-19T07:59:33.893-05:002014-07-19T07:59:33.893-05:00Thanks Sylvia and Shanti. Sylvia, I need to get t...Thanks Sylvia and Shanti. Sylvia, I need to get that book. I have a hard time reading non-fiction -- too much like "reality TV" for me! ;-) -- but I do like and admire Temple. Yes, Shanti, that is exactly what I was trying to say!Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-45720333824758577142014-07-19T00:11:59.482-05:002014-07-19T00:11:59.482-05:00Great Post! Isn't it insulting to autistic pe...Great Post! Isn't it insulting to autistic people to assume that they don't want the same things out of life the rest of us do? Everyone I know wants the ability to live independently, a way to meaningfully participate in their communities, a job with a reasonable salary, deep friendships, an ability to communicate and a romantic partner. In many cases (and I emphasize not all cases) autism itself is the barrier to those things. All the acceptance and awareness in the world will not allow a person with severe autism those things by which the rest of us measure quality of life. So if I want my daughter to have a good quality of life how could that means I don't love her? Shantihttps://www.blogger.com/profile/11323636965254272203noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-57738693619961759872014-07-03T14:30:34.288-05:002014-07-03T14:30:34.288-05:00I am in the process of reading Temple Grandin'...I am in the process of reading Temple Grandin's book "The Autistic Brain". It is fascinating and addresses some of the issues you mention in this post. New brain imaging and other tests are able to figure out the answers to some of your questions, but they aren't available to the public just yet! It's exciting to think about improvements that could be possible for understanding our kids in the near futureSylviahttps://www.blogger.com/profile/11728106748390605243noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-62863275888510871862014-07-02T14:36:20.214-05:002014-07-02T14:36:20.214-05:00Thanks, Susan. I know you get it.Thanks, Susan. I know you get it.Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-49834923099561211812014-07-02T14:33:29.843-05:002014-07-02T14:33:29.843-05:00You are absolutely right Jane and I abhor that kin...You are absolutely right Jane and I abhor that kind of ABA. When Joe was 3 we did a casual home therapy for him that was sort of ABA but they didnt worry about "mastery" as much. It worked like a charm for him and was totally sold on ABA and then I saw the way it is frequently done (as you described) and hated it. Not too surprisingly the younger son didn't do as well with ABA.<br /><br />I just have a hard time with most adult autistics telling me I must hate my son because I want him "cured". I just want him to have a life. I don't think watching videos, barely leaving the house, not talking and maybe someday being institutionalized because my hubby and I can no longer care for him is much of a life.<br /><br />Sorry for sporatic replies -- internet is down and I'm doing it all on the phone! aaaaarrrrrrgggggggghhhh Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-43905956462486050592014-07-02T14:04:28.946-05:002014-07-02T14:04:28.946-05:00I didn't mean to suggest that parents are alwa...I didn't mean to suggest that parents are always at odds with their autistic kid -- Joe's absolutely entitled to want help and you're 100% right to do everything possible to ensure he gets it. It's impossible to know what a non-conventionally communicating kid like your younger son feels about his autism. And, you're right, surely there folks with autism who'd prefer not to have it.<br /><br />Admittedly, I come with a bit of a bias – I grew up as a faculty kid (half my parents’ faculty colleagues would probably be diagnosed on the spectrum, had they been born 20-40 yrs earlier; half their current grad students are), have a nephew on the spectrum and a kindy-aged girl whose BFFs are on the spectrum (her cousin, and a Montessori classmate, K). Around rather a lot of people on the spectrum who struggle but manage, as nobody’s trying to force them to be something they’re not. <br /><br />The way K is treated kills me. If my kid wants to spend all day in the play kitchen or decides to skip snack, it’s fine – she’s exercising free will. If K wants to spend all day in the play kitchen or not eat snack, he’s “non-compliant” and his aide MAKES him leave the kitchen/eat a snack. ABA pullouts are Skinnerian conditioning bordering on torture. (I’m pretty sure that if somebody attempted to make my kid sit in a chair and touch her nose 20x times for a Skittle, she’d do it a few times and wander off due to boredom, tiredness, dislike of red Skittles or because she’s FOUR. Make her do it 15x more? Epic tantrum, maybe she’d push the therapist out of the way, throw the Skittle, etc. K’s a sweet kid and so far as I can tell, his frustration and aggression is justified. His parents are thrilled he gets several hours of ABA a day, fully aware that he hates it. I'm guessing this sort of thing that results in angry autistic adults).<br />Katehttps://www.blogger.com/profile/14075630681598355493noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-47128931965801890502014-07-02T14:01:29.917-05:002014-07-02T14:01:29.917-05:00I have one son with autism that will never live on...I have one son with autism that will never live on his own or hold a job and one that might with some accommodations made. So I totally understand. So much to think about. I know you and I love and advocate fiercely for our guys and that is proof for anyone of deep love. Blessings! Anonymoushttps://www.blogger.com/profile/06941712767626451024noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-28362640721073638172014-07-02T12:32:05.040-05:002014-07-02T12:32:05.040-05:00This comment has been removed by the author.Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-83842392222913236312014-07-02T12:31:56.674-05:002014-07-02T12:31:56.674-05:00Yes, thank you, Looking for Blue Sky. That is exa...Yes, thank you, Looking for Blue Sky. That is exactly what I thought the original blog post said.Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-85855498185219087352014-07-02T12:09:32.271-05:002014-07-02T12:09:32.271-05:00I think what you've highlighted here is that e...I think what you've highlighted here is that every child and adult with autism is an individual and has different needs, some are happy the way they are, but some are not, some live fulfilled and independent lives, while others need a lot of help, and some do better if their difficulties are alleviated. Not necessarily their autism, but the problems associated with it: like severe anxiety xLooking for Blue Skyhttps://www.blogger.com/profile/09967209809039641493noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-41633063578631168612014-07-02T09:58:55.060-05:002014-07-02T09:58:55.060-05:00In your analogy you are assuming that the parents ...In your analogy you are assuming that the parents and children are at odds. If Joe were to tell me he likes his autism despite his difficulties, I would never try to cure him. But since he is unable to live a full life (in HIS opinion), I will continue to try to help him.Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-86987848465169616262014-07-02T09:53:43.463-05:002014-07-02T09:53:43.463-05:00Since my older (verbal) son has told me that he wi...Since my older (verbal) son has told me that he wishes he didn't have autism, I think it is safe to assume that my younger, nonverbal son (with so many more difficulties because of autism) feels the same. My primary objection to the ND folks is that they assume EVERYONE feels the same as they do and they are all different -- so why can't some other autistics feel different?Julie Shttps://www.blogger.com/profile/13310369662809987615noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-31538838045832712472014-07-01T18:11:39.183-05:002014-07-01T18:11:39.183-05:00Cancer can literally be excised and/or cured, if c...Cancer can literally be excised and/or cured, if caught early enough. MS effects motor planning. Neither is an integral part of who an individual is. So having autism is fundamentally different from having cancer or MS. <br /><br />You cannot separate the kid from the autism, because they are one and the same. Saying you want the autism cured/excised is basically saying you don't love or want the kid you've got -- you want a completely different kid. One that isn't autistic.<br /><br />Have you read Andrew Solomon's "Far From the Tree"? It's non-fiction, about parents who are raising a kid who are very, very different from themselves (with autism, DS, who are gay or musical prodigies, etc.) and the concept of horizontal identity which is beautifully explained here:<br /><br />http://m.newyorker.com/arts/critics/books/2012/11/19/121119crbo_books_heller?currentPage=all<br /><br />It more or less boils down to the fact that, very often, what a loving, devoted and well-intentioned parent sees as their kid's tragedy -- autism, deafness, homosexuality -- their kid sees as their identity, in a GOOD way. The gay kid sees his/her gayness as an integral part of who they are and doesn't want to be straight (not that it's even possible). <br /><br />I'm not autistic, so I've no idea what it feels like to be autistic. But every single autistic adult was once an autistic child -- so I'm inclined to take an autistic grownup's word for it when they object to trying to "cure" autism. <br /><br />How loved do you think a gay kid feels when his religious parents, with the very best if intentions, adopt a Hate the Sin (gayness), Love the Sinner (their son) approach? Do you think that kid feels loved if he knows his parents are trying to pray-the-gay-away with the best of intentions, to spare him Eternity in Hell?!?<br />Katehttps://www.blogger.com/profile/14075630681598355493noreply@blogger.comtag:blogger.com,1999:blog-6942900775029495748.post-54432098753648957322014-07-01T10:15:10.114-05:002014-07-01T10:15:10.114-05:00I think it is because you love him, and Joe, that ...I think it is because you love him, and Joe, that you advocate for awareness that not all people with ASD are the same and that accommodations need to be thought of and implemented. Yet that accommodation will in fact have to be different and modified for each individual. I always wonder if the mother whose child has cancer or MS is accused of not loving her child because she wants to cure them.Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.com