Wednesday, September 26, 2012

Hello, this is Ib, which is short for Elizabeth Grace.  I need to get this show on the road, but it took me forever to figure out how to really make a blog, with a blogroll and things like that so as to make it live.  Not all my friends are on the list yet but within the week it should be a fuller rendition.  The blogroll is a great place to browse for other Autistic points of view on a wide variety of topics.

Ariane Zurcher of Emma's Hope Book wrote a great piece here: http://emmashopebook.com/2012/08/27/want-to-know-about-autism-ask-an-autistic/ which I read after another few people had told me similar things.  Some of them were preservice teachers, and I thank you (you will recognize yourselves).  :)

The purpose of this blog is specifically so people can ask me things that may not come up on other blogs, which I completely recommend reading.  But let's say you have a burning desire for the answer to a question that nobody blogs about that week?  Come here and ask it in the comments.  You can do that right now.  I might answer myself, and I might also remember that my friend told me about it a couple months ago, so I could answer from multiple viewpoints in conversation.  Also, I may be able to give you a study about it that isn't insulting and eugenic and horrible.

Meanwhile, since I am sharing information without being asked anything yet, I think you should know that intermodal shipping is pretty excellent.  They take those containers on barges, and in port cities there are cranes that take them off the barges and put them on trains.  You may not know that those cranes in Oakland by the Bay Bridge are the inspiration behind AT-ATs in Star Wars. Different frame cranes with really giant tires take those same containers from trains to truck beds attached to semis here in Chicago.  This is on my mind because I drive my convertible among many of them to work, and think about all the places they have been.  Ahhhh, intermodality.  It is a fabulous thing not just in transportation, but in life.

Goodnight for now.  I am going to tell Facebook that this is here and see what happens.  If it is of use to you, then I will talk about things other than transportation!  :)

All the best,
Ib Grace



53 comments:

  1. Oh YES! YES! YES! And do not go all Meg Ryan on me while reading that, because this is very much a Grated YES! So happy. Bouncing, bouncing... (Ib taught me the joy of bouncing!) This is awesome and tomorrows post on Emma's Hope Book.. yup, it'll be about THIS blog of yours Ib. So excited. Woohoo!! XXX

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    1. Wait... Grated? Like Parmesan or nutmeg? You are awesome.

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    2. Totally saw that AFTER I'd hit the publish button and unlike my own blog where I can go in an edit, just had to sit with the humiliation knowing it was there for everyone to see....

      Now - onto more serious matters! I have a QUESTION, a REAL question, a serious question.... Ready?
      Here it is:

      My ten year old daughter, Emma is reading at a second grade level, (or so) but when she is given reading comprehension questions on her homework she gets very frustrated, bites her hand the minute she sees the homework. I only mention this to indicate her level of anxiety. Do you have any tips for me in working with her on reading comprehension? Are there ways I can make this less stressful?

      Thanks Ib. Really appreciate your thoughts on this.

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    3. OK, I think this will be two topics: basically one about reading comprehension assessment and the like, and one about things that cause anxiety on the spot. I will answer these both. Also, I will write a header entry about the mode of answers. All today! Stay tuned.

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  2. Hi Ib! :) So excited to read your blog... this is going to be fun!

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    1. Thanks E.! Your support helped me get over the blogging fears :)

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  3. Yay! Glad to see a new fellow blogger, AND fabulous friend and momma!! Hugs

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  4. Welcome Ibby and I look forward to learning lots!

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  5. Way to get started! I'm looking forward to more.

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  6. Aha! Best blogger in the world Ever! I might be biased. xxxx

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    1. Awww. :). Thank you Birdy.

      ( Everyone, this is my wife, who is telling me you have already guessed that.)

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  7. I really wish I knew how you feel about modes of transportation, though. You're hard to read sometimes...

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    1. Oh sorry dear. I will be sure to go on and on about the awesomeness of various modes of transportation in more detail. Communication is very important!! ;)

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  8. hello from Scotland! I teach autistic children and am learning so much every day. Cordeliax

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    1. Thanks for coming! Just got back from Scotland! LOVE LOVE LOVE!

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    2. I went to primary school with your lovely Birdy! I'm now a teacher in a special school and 3 out of 5 of my pupils are autistic. Got a question for you... I suspect one of them can read but not sure how to go about proving it or assessing it as she is not verbal and has huge sensory processing issues. Phonics is the most prevalent method of teaching reading here in Scotland but I'm not sure its right for her (or one of my other pupils who shows signs of being able to also) but can't seem to find any research on how (or why, but that's another question as its been mentioned functional communication would be a more appropriate thing to spend time on) to go about teaching reading to people who are autistic and cannot produce accurate phonics sounds verbally..... Any thoughts?

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    3. Hi Cordelia! Lovely to "meet" you! :)

      This is a brilliant question and one that I will be doing some deeper research on myself and with the help of specialist colleagues to make sure what I say is up-to-the-minute before I write the proper full blog post about it.

      The "why" question I can answer quite easily here though...and my guess is that you are already thinking it yourself. Reading is a joy. When I am reading, I'm enjoying the book, not sitting around reveling in the fact that I am one of those people who can reproduce accurate phonics sounds verbally.

      I also think there's a good chance you're onto something with these two kids. My mother tells me she and my dad "found out" I could read before getting around to doing any active teaching of it, and all of this was before school came into play. Plenty of kids learn in ways other than by reproducing sounds, and I'll get some of my colleagues to help me find just the right articles to help you on your quest.

      All the best,
      Ib

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    4. That is exactly what I had hoped you would say! Good to know I'm on the right track. I also have a post grad research interest in this as a possible research study. X

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    5. Hmmmm... I don't want to cut into your research topic by doing a giant study up in here then. Perhaps I should leave it at, "You are definitely on the right track"? xx Ib

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    6. Not starting post grad till next autumn but she's reading now!! All help greatly appreciated. I've got staff at school reading your blog too now! Xx

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    7. Thanks, that is excellent! I'm in touch with some reading specialist colleagues to clarify some of my special education concepts with the concepts taught in general literacy (because I have always found this to be the best way to go) but now is a terribly busy time of term for all of us so I don't want to be too pesky to them. Look for more info within the while, though!

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  9. how I wish when "my emma" was first diagnosed the internet was filled with places like this to read instead of terror sites. Back then we just turned off the computer. How wonderful that you will be here! I will show this to my daughter...I know she will thrilled to have a teacher her questions!

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    1. Thank you very much for coming. And hi to your Emma! And to you as well!! Hugs!

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  10. Yay! Your blog is here, your blog is here! Cannot wait to read these answers. My son and I explored intermodal since he wanted to know where the freight cars went *after* the train. It was so fun!

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    1. Hi Brenda! That right there (exploring intermodal!) is one of the many reasons why you so super rock!!

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  11. Hi Ibby, congrats on getting your blog up! You are so awesome, look forward to all your posts, especially those involving heavy machinery lifting devices that are easily transmutable to sic-fi robots:)
    Love you!

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  12. I am so excited to read this!!!

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  13. I have a question already (I hope that's OK)!

    I have a (negative) visceral reaction to the word "recovered" as in, "recovered from autism." But I have heard this word used by the same parents who do their utmost to help their autistic children (they are usually the ones who will also not say "autistic children" because they prefer "children with autism").

    I prefer the expression "shed the diagnosis" because I view this as more accurate. But I am very, very confused as to the way I can "frame" my thinking around autism as a newly dx'ed parent.

    Can you give me some pointers on how to frame my thinking, or is this all a matter of semantics and I'm letting this bother me more than necessary?

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    1. It is absolutely OK to have a question already! Thanks much!! I have flagged it for answer, and will think about it a lot and write more tomorrow in a full entry. Language is something that is very important to me and gives me visceral reactions as well when I hear certain things that carry with them particular ways of conceiving of things. Will you clarify for me one more detail for me to answer you personally though before I get started? By "newly dx'ed parent" do you mean 1. you are a person whose child has a recent diagnosis, 2. you have recently been diagnosed yourself, and are a parent, or some other combination?

      Preview/spoiler: I will probably tend to give you pointers on how I do workarounds to frame my own thinking so I can take care of business without stuff ruining my life, but at the same time I will go into graphic and historical detail about how you are right and your intuition is valid and that negative visceral reaction is happening for a very good reason.

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    2. Sorry I wasn't clear: I'm a parent, my child was diagnosed less than a year ago. Before this I had zero clue (and I mean, ZERO -- not even via that-Dustin-Hoffman-movie-you-know-which-one-but-I've-never-watched-it") what "autism" was. Since finding out, I've read a lot, mostly in the educational advocacy arena.

      My child went through an intensive intervention which helped his ability to verbally express himself. This same program exposed me to other parents of young children on the spectrum and the prevailing attitude (I don't think I exaggerate when I say predominantly "fix/cure.") When I casually mentioned that I didn't believe autism has a "cure" (because I don't subscribe to a disease model of autism), one parent said to me, "You're wrong! They can be cured!"

      Maybe it is because this is still "early" on for me, that I'm dealing with what seems like basic premises. Yet such basic premises, and philosophical differences therein, drives a lot of my decision when looking at where I get my support and knowledge about autism from. So for me it's become a bigger deal than I anticipated.

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    3. Ah, thanks for letting me know. I will definitely write you a post tomorrow. In the meantime, I think you'd find a lot of fellowship and camaraderie with a couple of other awesome parents I know whose blogs are Mama Be Good and Emma's Hope Book. That's Brenda Rothman and Ariane Zurcher respectively, and you can click on their blogs up and to the right, or check out their pictures (and click through to their blogs) in their kind welcoming comments to me above. Tell them I sent you :).

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    4. Thank you Ibby! I came here because I've emailed with Ariane in the past and am a fan of her blog (Hi, Ariane! It's me Jane - not to be confused with the child of Maja in below comment - my name's the anglo-girl version).

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    5. Hi Jane! It's so good to see you here! Just read Ibby's response to your question. In my experience those first few years were certainly the toughest for many reasons, the one you cite in your question certainly being one of them.

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  14. Hello from Macedonia,
    Congratulations on your blog, it looks very exciting. Thank you so much for your time and your patience, I believe your insights will be valuable to both children with autism and their families. I wish you all the best with your endevour.
    I have a question regarding education.My son is 10 1/2 (he was born on the same day as Emma from emmashopebook)and he is attending 6 grade special school. He is still working on his literacy, and his IEP for this year has only 9 letters. I feel that he can do more, but his teacher assessed him as challenged in both expressive and receptive language, especially in receptive and also as cognitively impaired, so she things that he is not capable of handling more. My question here would be how much I can rely on the teacher's assessment? What are your experience while at school? Were the teachers able to assess you fairly and were your classes tailored as per your abilities? Should I be more assertive with my opinion, having in mind that I am not an expert, but again I should know him best? But do I really know him best since he does have limited vocabulary and it is true that one can not read much out of his facial expression and so.
    The other question would be regarding using the foreign language. Jane (that is my son, it is pronounced YAH-NEH) started to speak Macedonian (his mother tongue) at around two and by 3 1/2 he started to use English words. Gradually, he totally abandoned Macedonian and he used only English. All of his therapists and teachers insisted on him using Macedonian and now he speaks English at home and Macedonian in the school to sometimes awkward results. I know it is really hard on him to use Macedonian, so my question here would be if I should also insist on Macedonian, having in mind that it is an official language here and that using English only would render him maladjusted? Unfortunately, current state is also unsustainable as it is very confusing for him to be bilingual?
    Thank you very much, Ib
    Kind regards,
    Maja

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    1. Before I go into detail in a blog post answering you Maja, would you mind if I ask some clarifying questions? Are you or your partner (or both) a native English speaker? If so, does the English speaker have very fluent Macedonian? Is an IEP legally binding in Macedonia? Will you tell me more about Jane, what he most enjoys doing, what you think he would read about if he could read well, for example, and what he chooses to do when given free choice of all things to do? What is your personal assessment of him in expressive and receptive language? Which is easier for him, do you think, for example?

      Preview/spoiler: In all my years teaching various ages and levels and subjects I have always believed that in most cases it is a good idea to pay attention to the fact that a mother knows her children, and I listen and recommend that other teachers should listen (sometimes unscrupulous people try to sell "cures" to mothers, but that is another story altogether and separate from this matter).

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    2. Hi Ib,

      Sorry for late reply, it is because of the time difference. It is 8 in the morning in Macedonia now:)
      No, both me and Jane's father are not native English speaker. I would say that my English is fairly good, but my husband's is not so. Jane is learning his English from TV and movies, mostly. Most of the people we are socializing with I speak English to certain degree, so it is not difficult for him to ascuire new words. I have to admit that at the beginning when he started to use English I encouraged him, I thought that it is good for him. Later, as his therapists insisted on him speaking Macedonian, I tried to reduce English usage, but to no avail. I believe that his motivation comes from the fact that people appreciate the fact that he speaks English and it makes him feel competent.
      IEPs are fairly new concept in the Macedonian education system, they are binding since two years ago.
      He is very visual type. I even suspect that it is a kind of sensory issue, that he needs to be constantly visually stimulated, either through TV or computer. When he was younger, he would often play with the light switch in the room, he liked constant change of light. So, he likes watching cartoons, he plays a lot of games on the computer, he likes eating, especially sweets. He likes his bike, his swimming, he likes to cuddle. Lately, he became obsessed with Toy Story, he memorized three whole movies and he is playing dialogues from the movies all the time.
      I can go on and on, but I can see that this post is already too long. Thank you once again, Ib
      Kind regards,
      Maja

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    3. I almost forgot the most interesting thing: He likes to call himself DJ, short from DJ Music. He claims that he is English, not Macedonian. Sometimes is even scary, for example he would say "I am not your son, I killed your son, Jane is dead, I am DJ", but that is rare. More often he would simply say "I am not Jane, my name is DJ"
      Once he was telling me about a town called Fairfield Washington. I checked it on-line, it is a town with 900 inhabitants. I guess he picked it up from some of his movies.
      Thanks, Ib
      Maja

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    4. Dear Maja,

      It turns out I am doing informal research to answer some of the important specifics in your question and it might turn into formal research as well. Evidence I know which indicates that bilingualism in childhood is a good idea, not confusing, helpful neurologically, etc. seems to have been done with kids who are generally not autistic, or if they are, it was for some reason left out... So, first I am "asking around..." and then I think it really needs a proper study. However, I can write your answer after the asking around part because it is informal, and most of what you are asking is what to do in a practical sense. So I should have something for you and DJ in a couple of days :).

      Best,
      Ib

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    5. You have also asked two questions. The first one is easy. Look for your blog topic on the first one today! :)

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  15. YAY YOU HAVE A BLOG YAY YAY YAY YAY YAY YAY

    I'll stop sounding ridiculous and twelve now.

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  16. I feel like I've just found a pot of gold! Is it really true that we can ask questions and you'll answer them? And that you're really autistic?! I'm flustered and don't know where to start! To distill down the story of my life which is now one big question and so few answers, I'll share this. Some weeks ago (exactly 11 weeks tomorrow, but who is counting anyway?) my 2 year old son was diagnosed with autism. The Dr believes him to be "moderate." That same week, his father, and my partner was also dx'd on the spectrum. I'm lonely and sad. I really don't know what "moderately autistic" means, or how to handle some of the behaviors my son exhibits. As an example, is it best to try to discipline tantrums, or is this something that he can't help? I want him to be thoroughly and authentically himself. But this want is conflicted with my overwhelming desire for him to fit in socially to avoid any unkindness coming in his direction. I feel terrible scolding him for acting up - should I? Is there a better way?

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    1. Anonymous, welcome! I just found your note. Yes it's true: you can, I will, and I am. I want to talk to you some more, so I hope you come back. Please feel free to write back soon and give yourself a pretend nickname to sign off with, if that makes you feel safer, and I will know it is you. I will write a whole blog article about this first question called "Meltdowns," and it will be for you. It is a good question. And you can come back and write as many questions as you want, because although it sometimes takes me a while to think things through and write about them properly, I really do care and want to answer your questions and I don't want you to feel sad and lonely if I can help it. Preview: Yes I would say there probably is indeed a better way and it will be easier for you to feel your way there if you understand what is going on a little more, so stay tuned. :) All the best and thanks for writing! Watch for your article! Ib

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  17. I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can't imagine that ever happening as he's already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if he wants to go outside for some fresh air. I get really tired of people saying how labels are bad. I mean when anyone sees him they get how tough it is and they use words like severe and low functioning, and they're right to, because he is. I dont' see how that's a bad thing, it's an honest thing, from my perspective. Also people who seem so dead set against labeling are either able to write down their views (something my son cannot do) or they are parents of kids who are much farther along than my son. Truthfully I don't really care about the labels, but I do feel upset when people make such a big deal about labels, when it's really clear the severe label isn't one that fits them. Also I'd like to see something that would make him able to go to the bathroom and not have to wear a diaper, use a utensil to eat his food and speak. If that's a cure, then I'll take it, if it's something else, great I'll take that. But I'm sick of everyone arguing about this stuff when they can WRITE and TALK! You seem like a reasonable person. I'd love your views on all this. Thanks.

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  18. Dear Anonymous, thanks for writing! When you write back please feel free to give yourself a pretend nickname to sign off with so I can know that it is you and you will know who I am talking to when I talk to you. Thank you for the compliment of saying I seem like a reasonable person :)

    Your question is interesting and very current right now. It is something I am indeed ready to talk more about and would like to think about some more. But before I do that, it is important for me to make it fit better with your family by knowing more pertinent details about your son, if you don't mind my asking. You will notice I almost always ask to know people better because I don't think what they cannot do gives me a good enough mental picture, enough to hold onto in my mind to feel like it is really possible for me to be able to talk about a person.

    So your son, what does he love? What are some things that really seem to interest him or hold his attention? Another thing that I found really fascinating is that he recently started indicating that he knows what you mean when you ask him if he wants to go outside for some fresh air. How does he indicate this? And is the answer usually yes, or no? Are there other things he indicates to you? Are there things he can't stand? Things you can predict he would gravitate toward? I would just love to hear more about him, whatever you can think of that you don't mind telling me.

    Then I will honestly tell you my thoughts on labels. And I do appreciate you taking the time to ask me about them even though I am a person who can write, and has written this: http://www.tinygracenotes.com/2012/10/a-person-is-not-function.html - so I will do my very best to answer well and in a balanced and nuanced way.

    All the best,
    Ib

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  19. Hi,
    I'm Tina. I'll tyr to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am tyring to answer them. J likes pizza, it's the only thing he'll eat. He strips the cheese off, eats that first then licks the tomato sauce off then scrapes the soft doughy part with his teeth and leaves the outer crust and what's left of the underneath part of the pizza. Let's see what else... Okay, I think he likes being with us, his family, me, my husband and his brother, although his brother is older by two and a half years (just turned 15) and they don't play or anything. J likes Sesame street and I guess maybe Elmo. But J is really unpredictable and is becoming more and more angry and violent. He hit his brother the other day in the face. We're all a little scared of him, to be honest.
    The school called us and asked what they should do when he runs out of the classroom, often screaming. He also hits himself. Did I mention that already? He likes going down the slide at the playground. But mostly he wants to be alone or is angry and makes this kind of screaming noise.
    I know he likes going outside because he smiles when I ask him. He doesn't smile that much any more. He doesn't like it when we tell him he has to do anything, like get dressed or brush his teeth. He lets me brush his teeth but if I try to get him to do it, he starts hitting. I guess I feel sad all the time and hopeless. I'm just going to be honest with you, because I don't see how this is a good life for any human being. I mean no one would ask to be this way. No one would "choose" to be like this. I think he feels that way too. We try. We love him. We wish we could do more to help him. We wish we could communicate better with him. But it's exhausting and my husband and I both have to work, so he goes to this school and is in a classroom for Autistic kids. They say they are working on a goal of toilet training him. They've been working on that goal for awhile.
    Yeah. so I guess that's it.
    I did read that thing you wrote about your friend. It's good he has you as a friend. But really, who would choose to live like that? In a group home, dependent on other people? So yeah, when people ask, well how autistic is he, I say, severely, because what else am I suppose to say? I mean I'm not going to say well he's in diapers and hits himself and gets violent and stuff. Like I said, if there was a cure or a pill that he could take that let him have friends or be toilet trained or eat other foods or not be so angry I'd give it to him in a heart beat. I would. I don't think that make me a bad parent to want that for my son. I love him. I do. But I hate that he can't do so many things. I don't blame his "autism" or whatever, I don't even know what that means anymore. I just hate seeing him like this.

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