tag:blogger.com,1999:blog-2811189992135134605.post4192761349090397783..comments2024-01-24T09:55:51.044-06:00Comments on Elvis Sightings: Hypothetically SpeakingJoyMamahttp://www.blogger.com/profile/15073328328434957851noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-2811189992135134605.post-49272548888343848842010-02-10T10:42:43.551-06:002010-02-10T10:42:43.551-06:00Yes we celebrate Joy's successes, and we will ...Yes we celebrate Joy's successes, and we will do whatever is in our power to help her to lead a fulfilling life.<br /><br />But....<br /><br />I spend more time than I probably should thinking about the things that Rose can do that Joy can't. And the things that Rose will be able to do in her life that Joy probably won't. And I really really spend a lot of time fretting about the responsibility that will likely be thrust onto Rose because she will be the Joy's closest relative once me and JoyMama are gone. So if a cure came along that had low risks and a high chance of success, I absolutely would be tempted.JoyDadhttps://www.blogger.com/profile/10248990973126523516noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-17000648621725087582010-02-09T19:49:52.646-06:002010-02-09T19:49:52.646-06:00Barbara - perhaps my dystopian pressure-fantasies ...Barbara - perhaps my dystopian pressure-fantasies did take things a little far. I think that pressure to pursue "cures" these days (though no parallel to cochlear implants has arrived on the scene) is actually more likely to come from other parents, bearing the implication that if you really *cared* about your child, you'd try Treatment X, Y, or Z.<br /><br />Thanks for your musings!<br /><br />Tanya, if you do read Speed of Dark, I'd be interested to hear what you think! And choosing not to stake out a hypothetical position is an eminently reasonable stance.JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-37217468032481526912010-02-09T18:42:09.259-06:002010-02-09T18:42:09.259-06:00I'm so glad you mentioned The Speed of Dark - ...I'm so glad you mentioned The Speed of Dark - I hadn't heard of it and would love to read it. <br /><br />You've listed some great points about the cure issue. I've thought about it for years, and I think I'm in the deciding-not-to-decide camp, especially since it's hypothetical. It would be a hugely personal and individual decision for everyone, and it's unfortunate that not everyone would respect that.Tanya @ TeenAutismhttp://teenautism.comnoreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-17246390520046690582010-02-09T18:38:59.892-06:002010-02-09T18:38:59.892-06:00Ooo. I'm good at rambling (run-at-the-keyboar...Ooo. I'm good at rambling (run-at-the-keyboard.) Thanks for the extra permission! <br /><br />"When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas. Very hard to sort out."<br /><br />I've read several parent posts (other diagnoses) with the attitude - if it (an alternative treatment) doesn't hurt and might help - why not? Without more certainty of benefit, the harm is that the parent wastes valuable emotional, monetary and time resources. <br /><br />I plant myself squarely between neuroscientists/physicians and parents - knowing less and more of human neurology. Comparison of medical treatment of epilepsy and autism puts autism behind about a century. <br /><br />Indeed, (as you said in comments, JM) "there's no parallel test, so it has to be all about the symptoms". The 'symptoms' of autism are behavioral, and behavior results from complex neuronal interaction. I think you can be relieved, my Friend, from the fictional dilemma of having to decide between 'taking the cure' and losing all societal support. <br /><br />Alas, I do believe a known genetic marker will result in the same fate of many infants with DS. I know even less about genetics than neurology, and so, can not even come close to an expectation of that (holocaust). <br /><br />Thank you so much for this post, JoyMama. And for your generous permission for me to leave lots of words here. BRatKAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-62681939176779142702010-02-09T13:25:22.260-06:002010-02-09T13:25:22.260-06:00Mimzy - the parallel with Deaf advocacy is so inte...Mimzy - the parallel with Deaf advocacy is so interesting, isn't it? both with rejecting the person-first language and with the "cure question." Except that in the case of deafness, there IS the cochlear implant procedure, with all its pros and cons. I wonder if things would play out in the same way for autism if a similarly effective (yet problematic) "cure" were discovered.JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-47837227253253103312010-02-09T13:20:27.027-06:002010-02-09T13:20:27.027-06:00AuntieS - beautiful! *snif* Thank you. I was st...AuntieS - beautiful! *snif* Thank you. I was struggling with a paragraph around the tension or lack of tension between loving/accepting someone the way they are, and trying to ameliorate that which makes life difficult... but it wasn't coming out right so I skipped it. Love how you expressed it.JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-88041678143155503652010-02-09T12:15:40.499-06:002010-02-09T12:15:40.499-06:00goodfountain - one difference between epilepsy and...goodfountain - one difference between epilepsy and autism is that with epilepsy there's the EEG evidence that can make a positive diagnosis. With autism, there's no parallel test, so it has to be all about the symptoms... which makes situations like yours & Charlotte's so interesting. Such good questions about how to define the changes you've seen in her, and how to categorize them, and whether it matters. *So* complex, all the way around.JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-79722996889998420562010-02-09T11:53:06.823-06:002010-02-09T11:53:06.823-06:00I couldn't help but relate this to Deaf cultur...I couldn't help but relate this to Deaf culture and the debate about cochlear implants. <br /><br />Most hearing people have a very hard time understanding why a parent, deaf or hearing, would choose NOT to get a cochlear implant to restore hearing - we talk about safety, ease of fitting in with the mainstream world, etc. <br /><br />Many people in the Deaf culture feel you're making a child not really fit into either world by giving them an implant - they can't hear as well as 'hearing people' can't enjoy music in the same way... what they hear just isn't as rich as what hearing people hear. BUT they learn to speak... and so usually don't learn sign language and can't be a part of the Deaf culture they were born into.<br /><br />As a hearing person, it has taken me a long time to see it from the Deaf culture perspective. I know what I would do if my child were Deaf -- I would want them to be a part of my culture, the hearing culture. And looking at it from that perspective, I can see why parents who are deaf choose to have their children be part of their culture as well.<br /><br />So back to a 'cure' for Autism. Like my perspective on Deaf culture, I can see both sides of the story. I know some Autistic adults who thwart the person-first language and WANT to be known as 'Autistic'. And some children who are having such a hard time coping with everything that goes on around them they can't take time to just be a kid and be happy and parents who are at a loss for helping them try to be happy and keep their family together.<br /><br />Unlike my thoughts on cochlear implants, with Autism I don't know what I would do.<br /><br /><br /><br /><br />*for an interesting video on the cochlear implant debate watch 'Sound and Fury'Mimzyhttps://www.blogger.com/profile/05096120355407666343noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-52085956500028616522010-02-09T08:10:10.856-06:002010-02-09T08:10:10.856-06:00Joy is a joy to me just as she is, with her bright...Joy is a joy to me just as she is, with her bright adorable smile and her energy and affection. Do I wish that her life could be easier? Do I wish that she could speak and communicate her wants, needs, and thoughts more easily? Yes, absolutely yes. I have learned much about acceptance and difference and looking for positives and rejoicing in small steps, which I might not have experienced if Joy was not the girl she is. And yet, I ache at times for the struggles that I see my brother and sister-in-law face, the times when they have been so, so tired and worried. I feel sadness at times when I see that Rose does not have the sibling relationship that seems "typical" for most kids. So, I can honestly say that I love Joy just as she is and will continue to find joy in her life and path as it develops, but if "cure" means that her path in life could be easier for her and those around her, then I would jump at the opportunity for that "cure."<br />-AuntieSAuntieSnoreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-12057929439729442572010-02-09T07:56:23.618-06:002010-02-09T07:56:23.618-06:00One of the issues with the 'cure' discussi...One of the issues with the 'cure' discussion stems from the fact that autism is so many different things. And, we're probably going to find out someday, caused by many different things.<br /><br />I have unwittingly "cured" Charlotte of several of her autistic symptoms by making some dietary changes. I made those changes to cure her of a persistent rash but it had other effects of improving her eye contact and suddenly giving her the ability to use non verbal body language. <br /><br />What if curing Joy's epilepsy made her autistic symptoms go away? Would she be cured of autism too? Would that mean she was never autistic to begin with? <br /><br />Would it matter?<br /><br />I don't think there's anything wrong with wanting to make life easier for our children, no matter what their disability, or whether they have a disability at all.Anonymousnoreply@blogger.com