tag:blogger.com,1999:blog-1725958813857579465.post3175294023276228967..comments2024-01-18T05:02:46.000-08:00Comments on Tiny Grace Notes (Ask an Autistic): Labels; Also, Intense Teaching is Realer than "Cure"Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-1725958813857579465.post-59605012950737318782016-09-25T20:49:24.972-07:002016-09-25T20:49:24.972-07:00I suspect even many kids who don't understand ...I suspect even many kids who don't understand the words you're using still read the attitude behind the words. If you're thinking "this kid is so impaired, he or she can't X, Y, Z", you tend to react two ways. Either you give up on teaching them, or you overfocus on trying to fix them. With the first option, they notice that you're not asking them to do anything challenging or new - and you get things like the kid tricking you into helping them when they can actually do it themselves (while volunteering with disabled kids, I've fallen for that trick so many times!), or just getting bored or frustrated and misbehaving. Which then reinforces low expectations.<br />With the second option, you pressure them to perform, you test instead of teaching, you put too much stress on them and get too upset when they fail. You get faster and louder and more abrupt the more they struggle. And they notice this and get overloaded and stressed out and panicky and feel like a failure if they can't get it right.<br />So even if they don't understand the words, they probably understand the actions on a basic level, and that's enough to tell the attitudes behind the words.Ettinahttps://www.blogger.com/profile/08230821659466586897noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-6978885390287078182013-10-30T05:27:45.747-07:002013-10-30T05:27:45.747-07:00About the toilet training: (and this is my experie...About the toilet training: (and this is my experience only) When we struggled with my son I began to realize that the only two things he could control were his eating and his toileting. Eating was never a problem but toileting almost became a battle ground. When I saw this I set out to change it and GRANT HIM THE CONTROL. Seriously, I had to honestly come to a place where I decided that whatever happened it would be OK. Even though he was non-verbal and I wasn't sure what he really understood, I repeatedly assured him that it was totally his choice -- to use the toilet or not -- but that I hoped he would choose to do it. I honestly believe that whenever we do anything, if we aren't talking about it in terms of working together as a team, if my frame of reference is: I'm gonna get this kid to do X or stop doing Y. It just doesn't work. He has to be a part of it and I have to be OK if he just isn't read to do the thing I think he should be doing. I wrote a little about the potty training thing here: http://daysixtyseven.blogspot.com/2007/10/party-poopers.htmlChristinehttps://www.blogger.com/profile/09687586555108712164noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-66604506730932219092013-10-28T18:49:58.393-07:002013-10-28T18:49:58.393-07:00Awesome as always. I like to stay away from labels...Awesome as always. I like to stay away from labels because as you mentioned, Ib, function varies in the moment. To put this in perspective - as a college student I'm pulling a 3.9 GPA so one might say that's pretty high functioning (little self pride showing here). But if all my courses were math, I would NOT be pulling this GPA and can guarantee I would be low functioning. So what am I? A high functioning college student or a low functioning student? I'm both. All humans have strengths and weaknesses. Some strengths are extreme as are some weaknesses. But everyone has both. It's all about the focus and how we use our strengths. I am a huge proponent of using our kids' special interests in all aspects of learning - whether they are on the spectrum or not.Amy Caraballohttps://www.blogger.com/profile/15952935915378421291noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-61644920270044709852013-10-28T12:35:41.321-07:002013-10-28T12:35:41.321-07:00As someone extremely prone to losing skills under ...As someone extremely prone to losing skills under stress I have the joy of experiencing at least 3/4ths of the autistic version of the wager sometimes in the same day. In my experience it is pretty rare for people to actually take Pascal up on sound mathematical advice. That is when I am stressed to the point that outward appearances fit with people's opinion of autism no one picks the positivity model.<br /><br />I don't believe in a binary system for autistic functioning. I understand why it infuriates someone who's child cannot type if someone like myself doesn't consider myself high functioning but according to the latest tests of actual functioning I am 3 standard deviations below the norm. That means I know people whose much more severe by the usual ways we define functioning in autism kids have grown up to score higher on these particular scales than I do without ever uttering a single word. To the person asking the questions believe me that leaves me a little stumped too and frustrated. (Not that speech has anything to do with intelligence. It does have to an impact on where you score in tests of adaptive behaviour though because they are very focused on can you call for help etc...)<br /><br />Frustrated because what it means in practice is often the people who make decisions about me hold the tests side by side and I don't make sense to them either. Too often the decisions made leave me with so little support it is flat out dangerous. <br /><br />When pressed at a social event on Saturday for an answer to why change was too hard for me to contemplate something that would be positive in most ways I replied honestly for that exact moment that I have high functioning autism. I had after all come from playing somewhat difficult music with hardly no practice with a group of strangers, and was then sitting and talking and eating with them. So right in that moment if one is hung up on functioning that was high for me. Almost celestial functioning really. Most of the time is not like that though. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-31639777266226536092013-10-28T12:34:54.556-07:002013-10-28T12:34:54.556-07:00Ibby, I love how beautifully and carefully you'...Ibby, I love how beautifully and carefully you've explained and responded to this mother and many others out there who are reading it. The non-threatening and all inclusive mode of it makes it so welcoming that it would invest the most skeptic in your argument. You are right, love does conquer all and if presented the way you advocated, we will have less crimes committed against our autistic children & autistic adults. Thank you. I love you even more now.SennurUSAhttps://www.blogger.com/profile/15938030959181870500noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-59671266612969607272013-10-28T12:15:45.728-07:002013-10-28T12:15:45.728-07:00I agree with Brenda--thoroughly wonderful reading,...I agree with Brenda--thoroughly wonderful reading, as always. professorlinhttps://www.blogger.com/profile/09753671973178820364noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-4043496596234710182012-10-28T23:13:34.612-07:002012-10-28T23:13:34.612-07:00I just noticed that you were also asking after toi...I just noticed that you were also asking after toilet training strategies ... here's Leo's story, some of it may help: http://www.thinkingautismguide.com/search/label/toiletingShannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-59005180527334132262012-10-28T19:31:40.281-07:002012-10-28T19:31:40.281-07:00Found your blog through Thinking Person's Guid...Found your blog through Thinking Person's Guide. I love this conversation...I believe it is so important to presume competence. And even when families have little hope left...to always focus on the positives. Beginning with strengths and strong interests is the way to go. Thank you so much. I look forward to reading more. I also appreciate your willingness to help with FBA-BIPs. Tim Villegashttp://thinkinclusive.usnoreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-12467173753883981072012-10-28T12:59:28.074-07:002012-10-28T12:59:28.074-07:00Thank you so much for coming and writing, Ari! Tha...Thank you so much for coming and writing, Ari! That is also my wish, and I wish the wish no longer to be rare. Your blog is awesome and I am going to put it on the blog roll of excellent blogs so more people will see what you have to say!Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-58482002108248503312012-10-28T12:55:34.038-07:002012-10-28T12:55:34.038-07:00How lovely, JoyMama, that you have made a way of s...How lovely, JoyMama, that you have made a way of speaking it which is so evocative and resonant with your daughter as she is. It gives me a vision and music-snippet of a lovely Mama and babygirl dolphin gliding in the sea off Santa Barbara. The Mama dolphin sings, but the baby, for now, just listens, swimming close and parallel and looking that distant but present dolphin-smiley way. :)Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-59688292063911639952012-10-28T12:44:24.665-07:002012-10-28T12:44:24.665-07:00Thanks Lindi {Balanced Imperfection}!
I am hoping...Thanks Lindi {Balanced Imperfection}!<br /><br />I am hoping people continue to write their experience and advice to one another here as you have done, so it can be a community forum of usefulness. This is making me very happy.<br /><br />The test of a good BIP is whether the outcome is really a better life for the kid, and it sounds like this one is working out that way, with your little boy happy and smiling again.<br /><br />But you know, as new of a mother as I am, I feel you on the hard part of it... when I found out that if you pick the babies up and play with them every single time they make a dissatisfied sound they will never get any sleep or naps, and they will become overtired and miserable and be paradoxically unable to sleep at night, I understood the logic, but OH! It was not easy for me to listen to my sweet baby boys obviously wanting me to pick them up and play with them, and every fiber of me also wanting to pick them up and play with them, because come on, I can hear them! However, they soon went to peaceful sleep, and now they are great at taking naps and sleep well at night. It was right for me to learn how to take the long view. But it was harder than... och, I don't have to tell you!Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-65338097702569517942012-10-28T12:36:13.628-07:002012-10-28T12:36:13.628-07:00Thanks Jim! You are clearly a Winner!Thanks Jim! You are clearly a Winner!Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-2460315490168057682012-10-28T12:35:48.574-07:002012-10-28T12:35:48.574-07:00Thanks Shannon!
Incidentally, for me, talking to ...Thanks Shannon!<br /><br />Incidentally, for me, talking to more than one person at the same time (well) was a multi-tasking skill learned over quite a while, and it's why parties take so many spoons and were (and often still are) so assiduously avoided. 1:1 indeed! :DElizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-86604794370497140382012-10-28T12:31:24.486-07:002012-10-28T12:31:24.486-07:00Thanks Roia!
Thanks Roia!<br />Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-38946435962372388432012-10-26T13:32:16.192-07:002012-10-26T13:32:16.192-07:00Am nonverbal. People not a friend regularly assume...Am nonverbal. People not a friend regularly assume not speaking equals being stupid AND not understanding/hearing.<br /><br />Wish to universally un-link intelligence, understanding, and speech capability in everyone's minds all. So much easier life would be then. So rare to almost never to meet not a friend type person not assuming stupid or deaf: http://ari-blue.blogspot.com/2012/07/new-wetsuit.htmlArihttps://www.blogger.com/profile/04365712318809125395noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-40497048800862851382012-10-26T10:35:37.766-07:002012-10-26T10:35:37.766-07:00Hello Ib -- I just discovered your blog via Shanno...Hello Ib -- I just discovered your blog via Shannon and TPGA, and wow! I've just read this one post so far, and am looking forward to reading the rest, but don't want to go too quickly. There's too much food for thought here just to skim.<br /><br />I'll also probably be back with a question or two, sooner or later.<br /><br />The "high octane" descriptor is a fine one. The alternative we've used that resonates even more for me is "swimming in the deep end of the autism pool." I can't remember from whom we first borrowed that, but it speaks to my daughter's love of water, as well as a gentle nod to the mystery of the parts of her experience that she does not (yet) communicate to me.<br /><br />I blog as JoyMama over at <a href="http://elvis-sightings.blogspot.com" rel="nofollow">Elvis Sightings</a>, by the way. JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-50462286734211311002012-10-26T08:50:46.953-07:002012-10-26T08:50:46.953-07:00A great post Ibby. So many good thoughts here. Lov...A great post Ibby. So many good thoughts here. Love the "high octane" description, and the Pascal;s Wager example.<br /><br />What I'll comment about in a little more detail though is the use of well-developed BIPs. From one family's experience, these can be incredibly valuable. My son had a very difficult year last year. The team supporting him at school was great. We worked closely with them, and had very open communications back and forth. But despite our best attempts, there were some things that just weren't working. And in our case, not being able to fix those things created a spiral affect, and a bad situation became even worse. He was unhappy. His behavior escalated. His abililty to focus and hold it together in school declined. It was through the use of a BIP that we were finally able to turn things around. <br /><br />The school district had a behavioral specialist who worked with the elementary school buildings. The team involved her, and she worked closely with all of us to help. She observed my little guy and how the staff worked with him. Helped identify some things we were all doing, that even though well intentioned, were making things worse instead of better. We identified some of the sources of the problems (a main one being an after school program that wasn't a good fit). We changed after school programs, and implemented a BIP at school with reinforcers at home. It took trememdous commitment from everyone. The first couple of weeks were challenging, as he got used to the plan... and tested his limits. But it was amazing how quickly we started to see the plan working and those changes helping. In our case, I'd share that two of the most important things to make this work were consistency and follow-through. Both of which can be incredibly hard. And as a Mom, it can be heart-wrenching. There were times he would get so mad at me for following through with the reinforcers at home. We went through everything including meltdowns, tears, negotiations (trying to get me to change what I was doing), and ignoring me/or telling me he didn't want me to be near him. But I stayed with it, no matter how hard. Because even though it was hard for me, I knew the consistency was important for him.<br /><br />We are still using a BIP. It is modified to address the things that are the greatest challenges this year. And with it, his days are positive and he almost always is able to meet the goals we developed in the plan and earn his privileges (the reinforcers at home). We still have a day every once in a while that he doesn't, but he understands the consequences now. He may not be happy about them, but the reactions aren't as extreme. And all the hard work has definitely been worth it to see my little boy happy and smiling again!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-29426530824000089462012-10-26T08:01:53.470-07:002012-10-26T08:01:53.470-07:00Love the reference/comparison to Pascal's Wage...Love the reference/comparison to Pascal's Wager here. Assume understanding, place the wager. The benefit far outweighs the risk.Jimhttps://www.blogger.com/profile/11538573774184028004noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-51313362113959604202012-10-25T23:30:39.627-07:002012-10-25T23:30:39.627-07:00Thank you for taking the time to have this convers...Thank you for taking the time to have this conversation. I'm glad you like the "high octane" description. Another description I use is "he's a 1:1 guy," which IMHO communicates the information people are asking after in practical terms, and also without judgment. Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-54091634834616700182012-10-25T19:38:05.739-07:002012-10-25T19:38:05.739-07:00Thanks, both Alyssa and Ib, for kindly getting my ...Thanks, both Alyssa and Ib, for kindly getting my neurons to fire. I guess I must have run off to get my tea while I was reading about the Wager. Sorry about that. <br /><br />It is startling how committed people can be to particular ideas and how decidedly unquestioning as well. Of course, I say this knowing full well there are ideas I am fairly unwilling to change. Sigh.<br /><br />CJ and I have, as it happens, met, and I hope to see her again in April at our regional music therapy conference. She is very cool, and I love her decision to present sensory friendly concerts. As a person who travels with ear plugs (much as I hate things in my ears) everywhere I go, I'm most appreciative of people who think to do these things.<br /><br />I'm pretty grateful I get to be a music therapist. I've learned some things over the years, and I'm guessing I've still got a long way to go. The folks I work with have long and involved trauma histories, but when they're finally ready to use music, it's amazing and beautiful. My most joyful moment, recently, was humming "Let It Be" with a man who doesn't use speech to communicate. It took us 15 years to get to this point, but it was worth it. <br /><br />Thanks for the validation (again, both Alyssa and Ib) regarding making sure people have a way to say "stop now". Sometimes the work of therapy gets complex and communication gets even harder to figure out- especially when there seems to be a lot of ambivalence. But we slog through and do our best, making mistakes and trying again. <br /><br />I look forward to reading more of your posts, Ib! <br />Roiahttps://www.blogger.com/profile/12840915191850723381noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-36724758981419409302012-10-24T07:40:17.252-07:002012-10-24T07:40:17.252-07:00Brenda, you are thoroughly wonderful reading. And...Brenda, you are thoroughly wonderful reading. And I am delighted to see you mention communicating through echolalia. I want to write an article about that sometime.<br /><br />And picturing your game where your little Ferrari opens and closes the door to your bigly emoted greetings is making me smile :).<br /><br />IbElizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-51483137644152300672012-10-24T07:36:50.932-07:002012-10-24T07:36:50.932-07:00Roia,
Thanks for writing! I think it is awesome...Roia, <br /><br />Thanks for writing! I think it is awesome that you are helping people figure out how to communicate that they need to stop, which is one of the most important messages they will need in their lexicon. <br /><br />Also, I love love love the idea of communicating with music. When I was a youth, I had a heck of a time verbally expressing ideas with content of any emotional complexity until I was around 22 and got some direct training in it, and I only really got good at it in my later twenties in college by getting a minor in theatre and a lot of excellent stage experience (theatre theory for those who are not familiar is actually very internal and honest and helps you know yourself and others and what emotional things are called a whole lot better). <br /><br />Meanwhile, the whole time, like maybe my whole life, I was able to relate emotionally through music, though I did not know enough to call it that... just instinctively knew it was my only real chance of getting closer to others other than sports (which didn't work as well after adolescence, when emotion became more of a highlight). I am delighted that you and my friend CJ (Hi CJ, do you read this? I think you are so awesome!) who is doing radical things with music therapy are doing what you do to help people really get into another way of communicating that I do believe might be closer to native.<br /><br />Thank you!<br />IbElizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-25831865741448037382012-10-24T07:25:31.281-07:002012-10-24T07:25:31.281-07:00Yes. To be transparent about myself, I completely ...Yes. To be transparent about myself, I completely believe that only the left hand side of the grid is likely to be real, but in Pascal's Wager, you give equal probability credit to the side you don't believe, which is to say, I am only for the sake of argument imagining that it is equally likely that the kid totally doesn't understand a word of what you say, can't hear it, doesn't even pick up on the vibe, etc., and so therefore it is a completely moot point that nobody should ever even care about. <br /><br />This is a common position actually taken in real life by people who believe that those who do not engage in what they recognize to be expressive communication are therefore incapable of receptive communication (understanding anything). They sometimes go on to say they have tests and other "scientific" means of "proving" this, which I also don't particularly trust because of the people I have met who were alleged to understand nothing earlier in their life and can now tell me about that allegation and its ramifications in a wide range of graphic detail. <br /><br />For some reason some of the people who believe in presuming incompetence sometimes feel the urge to evangelically defend their offensive theory to others, even though you really cannot know for sure what is in the mind of another, and as the Pascal's Wager exercise shows, it is a much better idea to presume competence and be wrong (nothing happens, upper right quadrant) than to presume incompetence and be wrong (some devastating potential consequences indicated in lower left quadrant).Elizabeth J. (Ibby) Gracehttps://www.blogger.com/profile/08330631899371657005noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-7730191688793347502012-10-24T04:14:09.354-07:002012-10-24T04:14:09.354-07:00Since it was on the "doesn't understand&q...Since it was on the "doesn't understand" side, I'm guessing that it's the CAN'T that she wrote. <br />And respecting that request is very important.Alyssahttps://www.blogger.com/profile/06413844178426365789noreply@blogger.comtag:blogger.com,1999:blog-1725958813857579465.post-11540842587330320792012-10-23T18:32:14.507-07:002012-10-23T18:32:14.507-07:00I very much appreciated reading your approach to b...I very much appreciated reading your approach to behavior support. I'm not a behaviorally -focused therapist by any stretch of the imagination (I work as a music therapist for variously octane-ated folks), but when people really struggle to communicate because speech is not their main language, I try to make sure we figure out a way for them to say "I need to stop for now" and make sure to respect the request/communication. <br /><br />One question for you: in your little chart up there (which you used to demonstrate the Pascal's Wager approach to speaking about people respectfully), did you mean to say "doesn't matter, they CAN'T hear you?" (which is what you said) or did you actually mean "Doesn't matter, they CAN hear you?" <br /><br />I also find it helpful to think about the reaction I'm having to the folks I work with when they do something unexpected or dangerous (I try to notice if I'm feeling angry, frightened, frustrated, etc.), and, once I figure out my reaction, I ask the person, "Hey, I'm wondering if you're trying to let me know you're feeling frightened/angry/frustrated/sad/etc. about something by getting me to feel that way." Since we have the luxury of having music, I usually invite them to tell me with the music, because that way I can hear better- whereas, getting me to feel frightened makes it much harder for me to hear very well.<br /><br />Anyway, thanks again for the post (and for your blog in general)!Roiahttps://www.blogger.com/profile/12840915191850723381noreply@blogger.com