Tuesday, April 29, 2014

Give Me a Sign- Expressions of PosAutivity: #AutismPositivity2014

I have been thinking about doing a Autism Positivity blog post entry  for a few days. I kept drawing a blank on what to write about, so I was unsure if I would participate. Then, I read last night that this year's suggested theme is communication, and expression. This new info reminded me of a post that I have been thinking about writing for awhile. I hesitated, because I don't know if many will think it's positive. I don't know how it will be received by others in the autism community, especially those that don't typically follow my blog who don't know our story. Then, I remembered how much I tend to care about people who don't know my story who want to lend judgment on how I should express myself. I have no cares to give about those opinions. While speaking about the themes being self expression,and communication style of people with autism I can safely say this blog is how I express so much of my inner self. The people that follow me here know me more authentically than anyone I know in real life who has never read my writing (save maybe a couple people), so I do myself a disservice when I censor my writing to fit what what I think others want to read.

As most of you know I have a 10 year old profoundly autistic son named Beans. He is nonverbal. For years, the school, and private speech tried to teach him to use Picture Communication Symbols, or PECs for short. We tried the symbols, the actual pictures, and even objects. We tried devices, and differing methods all the while Beans became more, and more irate while virtually not improving in any of the methods, at all. As we all know, behavior is communication. It didn't take me very long to decipher what he was upset about. Life is confusing, and overwhelming for him as it is, but imagine being asked to participate in an activity for 7 years that made no sense to you, everyday. You were asked to point at random pictures, and not allowed to do anything until you did. This activity would follow you from eating to playing. Always that book of pictures. I often wondered what they looked like to him. Were they just colorful pieces of laminated paper? How did he feel when he saw that book come out day after day? He melted down more frequently, and his communication had not improved any measurable amount in that seven years. We had some of the best service providers in the country teaching him to use the book in private speech, and public school. No, to little improvement was a clear indication this was not working for him. The meltdowns from frustration was a clear sign to me that he does not learn this way.

I didn't know the struggle that lay ahead of me in getting professionals on board to use another method. It was such a shocking, and sobering experience to me to be completely shot down when
I went to explain to them that my son has not improved in seven years using PECs, or other communication methods like it. We need to try a new, completely different method. Not only would they not try, but they insisted I was wrong. This is the go-to method for nonverbal student, they said. He will get it, but it might take more time, they insisted.

I stood my ground. They had time. Seven years is a long time. I stamped my feet, and I dug my heels in. I know my son. He doesn't understand PECs. He doesn't think in pictures. He needs to learn another way. Just because it is not conventional does not mean it can't be done.

He is no longer in school, and due to my insistence on respecting his space the private SLP would not work with him anymore. It seemed to me that they were not willing to work with him, but rather only to mold him to the education that received about how to teach him. They knew of one way, and that was all. He HAD to fit that way, or they'd assume he was just being difficult.

I wouldn't stand for it. He had made some progress with signing, so that is the method I insisted we use. He had such a traumatic experience with any picture symbols, or cards that I would not allow them to be introduced into the learning environment. Beans made it clear they upset him. Why keep pushing something that doesn't work, and causes extreme anxiety for the child? Nonsensical, and upsetting to me that anyone would try.

As I try to come up with the best way to communicate with Beans some of my ideas rub even those in the autism community the wrong way. The main reason I believe sign language works really well with him is because I don't think he thinks in language. As a matter of fact, I don't think he understands much verbal language at all. This is usually a point of contention with me, and others. I am guessing a good many of you reading have stopped, and already thought about going straight down to the comment box to give me a piece of your mind about that! If you're still reading, and not prematurely typing away with great indignation, then I thank you for hearing me out before doling out your 2 cents.

Not understanding verbal language is not to say he doesn't think. He doesn't think like most. He doesn't even think in ways that tend to mirror others on the spectrum, as far as I have been able to tell. When most hear me say that I don't think Beans understands most of what we say to him they insist he does. They use examples about how they ask him this or that, and he understands by coming to them, or going toward the thing they're talking about. He does come when his name is called. Almost always, so I will give them that. He definitely understands his name, and responds to it, which is totally awesome for so many reasons. He doesn't respond to directions in the absence of gestures, or other context clues, though. He responds very heavily to gestures, and clues. If I ask him at 1:00 in the afternoon to come take a bath while not standing by the bathroom (for example) he will come to me, because he knows I am talking to him, but he will not do anything despite always being thrilled to have a bath any time, After a few seconds likely walk away, unless I pointed, or some other gesture indicating to him what I am wanting him to do. If I change that up by standing by the bathroom, or by sticking to the routine he will know what is expected of him, and go to the bathroom on his own quickly. This pretty much is how all language is for him. He doesn't tend to hear the words. He gets the clues by what you're doing, eg pointing at, standing by, holding, and what time of day it is.

So, if you're still with me you may see where I am going with this. By deciphering how Beans thinks, and altering his environment to his needs I am in no way presuming he is incompetent, but rather quite the opposite. He needs to be communicated with differently. Ignoring that, and insisting he doesn't would be such a sad thing to do. He needs to be able to communicate with the world, and we need to communicate with him. I want him to be heard. I want him to hear me. This point is often so missed by others that insist that he can understand everything we say, and presuming that I feel he's not able to think, or problem solve when I say he doesn't. As a matter of fact, he spends a great deal of his day trying to problem solve by gleaning clues from his environment about what is happening, and what is going to happen. He is very communicative in the way of gestures, and signing.He engages with us all day every day. It's just in a different way, and so many miss that by trying to force fit him into something he isn't. His language is not standard, but it's his way of speaking, thinking, and being. The best thing we can do is to listen without preconceived notions.

12 comments:

  1. This is a great post and I found it very positive. I get the 'not understanding spoken language or pictures' - as a child I didn't do well with either. I could never understand those printed out cartoons given to me as assignments in school or decipher what they were supposed to mean, You know: "Look at the cartoons on this paper and put them in sequential order, or look at the picture and tell us what is happening or what will happen next." Couldn't do it, got it wrong every time -- they said I wasn't taking my time or paying attention. But I don't think in pictures and oftentimes pictures themselves confuse me, especially the illustrated kind. And spoken language? I had difficulty putting together what people were saying to me - many times i pretended I just didn't hear so I wouldn't have to answer. I still have difficulty which is why i never talk on the phone - no visual cues to let me know what's what. And reading? I read young and had absolutely no idea what I was reading, although I could pretty much read anything you handed to me. I was well into high school before I truly comprehended what I read. My son is the same in many ways, although he did like using a picture system (it wasn't PECs) that we made up for him. It was a series of real photographs we cut into 1" squares and laminated then put on rings so he could carry them around. He didn't like the cartoon pics either. Only over the last 2 or 3 years (he's 11 now) has he noticeably shown improvement and that he understands when we speak to him without visual cues. We, too, used to have to use gestures and objects when we spoke to him - still do sometimes, especially when introducing something new. And he, too, always answered to his name. Anyway.... I loved your post, thank you for sharing it. My best to you ;)

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    1. Oh my, the picture ordering thing! I totally forgot about that! lol I was so bad at it. I recall sitting there with the pictures that I had colored, and cut out sitting there in front of me waiting to be glued onto the paper in sequential order, and not being able to do it to the point I cried. I do think in pictures, but I still couldn't do it. I read somewhere about how kids on the spectrum struggle with that task due to executive functioning issues, but I can't recall the details.

      Thanks for reading, and commenting. I appreciated reading your reply about your son, and your experiences. :)

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  2. I agree with your assessment on Beans and with Renee's comments above. Every person is different and when you throw autism into the mix ... well that is why it is a "spectrum". My younger (mostly non-verbal) son also doesn't get cartoons, but he does seem to get real pictures. He didn't respond to signs but has always done well with visual clues. Go figure. They are all different and kudos to you for finding what works for Beans.

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    1. The spectrum is so wide, and variable. We just never know what will work for any one person, as we're all so different. Thanks for reading and commenting!

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  3. I read in one of Temple Grandin's books that she did not think in words, and they are not her first language. Her first language is pictures. She had to translate the pictures into the words that are considered typical communication.

    It seems to me that you are building a language bridge that may (or may not) lead to understanding spoken language. If you are speaking and signing, the connection is there. It may "connect" for him some day, or maybe not, but he can communicate. And you are listening. And that is wonderful :)

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    1. I think you're right. He does seem to understand a few words, so I am hoping that the signs will help him build a better receptive (verbal) language repertoire. Thanks for reading!

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  4. I think it's super-positive to say, "Hey, I know my child can think and understand things, and I also know that THESE are things he understands and THESE are things that don't work with his brain, so please stop saying he's so slow-learning that the 'best' method of teaching him is one that hasn't worked at all in 7 years."

    It seems like you're challenging a lot of false binaries here: thinking in words vs thinking in pictures, presuming competence vs recognizing when someone doesn't have receptive language, standard education vs standard education for autistic children. Sometimes people get caught up in their model of the world and forget that the purpose of a map is to be inaccurate in a way that explains some things, but not others. I'm glad you persevered in switching to focus on signing with Beans, and saddened that the school and SLP weren't willing to work with you. I think you did a good job of explaining WHY you believe potentially controversial things like Beans understanding gestures but not (much) spoken language.

    I technically think in words but often the inner monologue is more like having a song stuck in my mind (which doesn't happen much since I don't have auditory memory and can maybe remember the lyrics or rhythm but not the actual sound) or an irritating distraction I keep paying attention to in the environment. Many if not most of the real "thoughts" occur in none of the named senses, just connections and maybe flashes of light or emotion--part of why I was verbally gifted in school was that I was able to unpack a lot of words from something much denser and clearer, and pack words back into that sort of inner understanding. If an entire essay is just ONE THOUGHT to me, it'll be quicker for me to write and pretty clearly driven. I'm also mathematically gifted and work as a computer programmer--I'm far from perfect but I tend to hone in on the important parts of a complex system/set of facts, and see the logical implications of various decisions. I couldn't describe how I'm thinking when I do that. So, yeah, Beans has his own complex way of thinking and there's no reducing that to one sense, just like all of us.

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    1. Yes, I totally understand how you describe your thought process. Much of the time I find learning in my own brain to be a process that doesn't follow a process. If that makes sense. It just happens when connection come together in a very mufti-sensory way. Connections just happen, or they don't. With math for me, it is a don't. I just have such a hard time retaining and understanding numerical info. I have learned some basics from tons of practice, but that is about as good as that can get.

      Thanks for reading, and commenting!

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  5. The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we'd love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory kiddos! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

    Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone's stories during the month and highlighting some on my Facebook page.

    I hope you'll join us!
    Jennifer @ The Sensory Spectrum
    (and you can find me @ The Jenny Evolution, too!)

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    1. Thank you for the invite! I will certainly try to participate!

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  6. I think this is spot-on. With all your warnings, I was bracing myself for some kind of outrageous nonsense, like a claim that you could read his mind while asleep, or something :)

    Jason Lu, inventor of the Eikona Bridge program, has an interesting theory about there being 2 types of autistic children: those who think in pictures, and those who think in processes. He calls this second type "video kids." They can understand a sequence or pattern of events, but not (at least initially) the individual words and pictures that make it up. I don't agree with everything he says, but I do think he's onto something important here.

    If you like, I can tell you more about how Jason teaches his son using short animations, but I don't want to come across as giving advice, because I don't know your son at all. The fact that he uses sign-language, though, makes me suspect that he thinks in a much more "holistic" way than many others. Is he also good at real-world nonverbal problem-solving? Like being able to find things you've hidden, or taking apart household devices? I see this often in "process" kids-- they can do many things that they can't express in any other way.

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    1. I would be open to hearing a new way of communicating, even if it doesn't work for my son. Thanks for the offer. :) Also, I apologize for taking so long to reply. I'm terribly behind on things, but I do appreciate your comment.

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