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Special children, special education, and the fight to have strengths supported as much as weaknesses

November 2, 2012 By 8 Comments

Ash finished retelling me the story of Sylvester and the Magic Pebble, which he read years ago, and was reminded of recently at school.  At the end (just in case you’re unfamiliar) Sylvester’s family — reunited now that he was transformed back into his true self — decided to put the pebble away, because, while they might want to use it some day, just then they had everything they wanted.  When he was finished reciting the story, Ash stopped, smiled, and said, “You know Mom, I love you just the way you are.”  And by the by, that is NOT a direct line from the book.

Squishy-sweet, and yet more proof that, YES, he can read things, comprehend them, relate to them, infer from them, and link their direct and indirect lessons to other things.  This comes as no surprise to us, and no doubt will be far from shocking to most of you by now.  I note it merely because….well ok, mostly because Ash is a complete sweetie….but aside from that, because we just met with school staff yesterday, and had yet another discussion about the fact that the issue isn’t Ash’s ability to do those things, the issue is his ability to process well enough to EXPRESS those abilities to them while in that environment and in response to their tactics.

That being the case, there’s no reason to give him reading material well below his level, with the excuse that you can’t give him anything that challenges him, if you can’t even get basic comprehension answers out of him, about overly simplistic stories.  The material used in an issue connected to but distinct from both the expression of comprehension skills (in general, or through whichever specific tests and tasks), and also the approach taken to try making those connections for him between what he can do, and how they want him to become able to show it.  You can give him the same comprehension/organization/utilization type activities as the other students, while using different material (just like he could still do definitions, sentence writing, and spelling tests, last year, using a graded-up spelling curriculum).  In fact, they are the second school to discover that, while using grade-level reading material, they have SIGNIFICANTLY less success getting proof of comprehension from him, than I do at home, providing him with material that better challenges and engages him.  Now, they can’t do much about the difference between the home and school sensory environments, and they have only so much wiggle room, being a public school, when it comes to tactics.  But MATERIAL, they can experiment with.  They can, and they have cause to.

It’s not just that giving him material well below the level of his reading fluency is a wasted opportunity, educationally.  It’s not just that he is more likely to put effort into the fight to find the words they want from him, if he’s rising to meet a challenge, if his interest in learning is engaged, and if he’s invested in the story (something that’s hard to do, when the story is five pages of a sentence or two apiece long).  It’s not the clichéd problem of the unchallenged child getting bored and therefore not performing as well as they could, because Ash is, at least consciously, happy to do what for him are brainless things.  It is the somewhat less clichéd problem of him sometimes not giving them the answer they want because he thinks it’s too obvious for them to possibly be asking for, and so he gets confused, trying to fathom what they could be after.  It’s not just that either, though.  The issue also comes down to something more personal and particular, more wrapped up in how he’s wired.

See, Ash’s brain doesn’t give things what we’d consider a reliable chronology.  It also doesn’t assign relevance the way a typical brain does, and, as per my last comment, doesn’t really assign relevance related to chronology, at all.  Combine this with his eidetic memory.  Anything from any moment in his life can be called up, as a complete experience, in any given moment, as if he was in that moment.  Think of the particular therapeutic tactic within the realm of hypnotic regression, where the person is taken back to a buried memory and asked to talk through the experience of being in that memory.  If an adult is asked to go back to the time such-and-such happened when they were a child, you don’t get their adult mind’s play-by-play, as a distanced narrator, of what happened.  You get child-them expressing themselves.  Well, Ash can do that automatically, unintentionally, reflexively.  Nothing is buried.  Nothing is pushed back or discarded from his conscious mind because he’s moved on from it.  He doesn’t move past things, he expands upon them, because nothing ever leaves him.  What does that mean in terms of this argument?  It means that if you give my seven year old something that he first read when he was four, he is most likely going to relate to and respond to that material, THE WAY HE WOULD HAVE WHEN HE WAS FOUR.  (That’s why he’s perfectly happy to play with baby toys or look at board books, despite being many developmental stages past them, and extremely bright besides.  When he was a baby, they entertained him and made him happy.  It was good enough for him then, so it can be good enough for him now, because “now” vs. “then” are equally real and relevant, to him.)  All questions of comprehension aside, when Ash was four, he could barely string a few words together.  It’s hard enough for him to express himself NOW, without him sending mixed signals to himself about whether he’s in the now, or the then.

“Ahh,” they ask me, “But these books you say he reads at home, that are expected to be read by fourth or fifth graders….can he actually relate to them?”  Look, I don’t pick just anything.  In fact, there are many things I pointedly don’t pick for him, despite the fact that he is technically capable of reading them, because they wouldn’t be relevant to him.  Nevertheless, although it takes some work to find them, there are skill-appropriate books out there which feature characters he can relate to, and situations it is appropriate for him to learn lessons from.  Many 4th grade books feature main characters that are around 10 years old….and in ‘boy books’ in particular, the world of a 10 year old is not drastically different from that of a seven year old.  Think about the How To Train Your Dragon series that he’s been reading at home.  Hiccup deals with increasing expectations for him of responsibility and the skills to be independent, while struggling to do so, and struggling with feelings of frustration, guilt, and not wanting to let anyone down.  He’s very bright, but feels that it isn’t appreciated even when he proves it, because he thinks outside the box that most people in his life, live in.  He is involved with the people and activities around him, both out of obligation and desire, but never quite fits in.  He deals with bullying, with trying to find his place socially and societally and functionally.  He’s not concerned with romance yet, he just wants to make it through each day feeling comfortable, successful, and accepted.  He has the feeling he could do a lot better for himself and in helping everyone else, if he could just be himself and do things his way, instead of trying to play the role he’s being forced to take on (while most people make it clear they expect him to fail).  Etc. etc.  Sound like anyone else you’ve heard about?

::sigh::

Ash’s new school has thus far been faster on the uptake, or at least more responsive to the uptakes handed to them, relative to his old school, when it comes to accommodating his challenges.  I mean, we were pretty lucky with the last program, but it still gets your attention when the new program has six accommodations in place, in the classroom itself and not just the therapy rooms, within the first little-over-a-week.  I wish they were likewise on the ball when it comes to accommodating his strengths!  It took the old school half the academic year of my riding their ass (to use my own fine grasp of language), before they finally upgraded his ELA curriculum in a satisfactory way.  I was rather hoping it wouldn’t take this school quite so long, especially since last year proved that Ash responded well and successfully.  And yet, we met resistance even when we suggested grading-up his spelling words — a far simpler thing to deal with than the issue of reading material.  “Well,” they said, “You want to make sure you give them words they are going to use.”

First off, are they seriously going to tell me that a third or even fourth grader is using a vastly different set of vocabulary, within vastly different kinds of subjects to write about, than a second grader does?  I’m not suggesting they test him on spelling “thermocouple” just because he nonchalantly read that out of a junkmail catalog back before starting kindergarten.  I’m just suggesting that he has cause to use words (and does anyway) beyond those chosen specifically because they familiarize the barely-literate with basic patterns with which to sound things out.  As it is, I have to put reminders on his spelling lists to have have sentences provided during the quizzes, so that Ash knows which homophone his spelling of is being tested.  It’s pretty common for me to have to say things like, “Ok Ash, how do you spell here, as in please-come-over-here?”  A common follow-up would be him asking me if he can also spell, “Hear, as in what you do with your ears,” for me.  An animal tail vs. a fairy tale?  No problem.  Too vs. to?  No problem.  Plain and plane, sun and son, ate and eight, bear and bare, mail and male…………  He’s got this.  It’s not that he never makes a spelling error, but it’s the exception far more than the rule.  Remember, his processing issues might interfere with reliable recall timing and/or appropriate application, but he’s got an eidetic memory, and he’s been reading everything he laid eyes on since he was a toddler.  He was a fluent reader before he got to pre-K.  He knows how to spell almost all words he’s aware of, and can take a pretty good guess at many others, simply because he’s seen so many of them written, and it doesn’t matter if he saw them before or after he knew what they were.

Secondly, he is already testing at 100% on each weekly segment of the grade-level spelling curriculum, before he’s started studying it.  The argument that something is the most relevant for him to learn, loses potency when it’s something he ALREADY KNOWS.  In fact, they have already noted that he is above-age/grade when it comes to his vocabulary.  His statements — verbal or written — might come out jumbled a fair amount of the time (if he doesn’t get cued that they’ve done so, and allowed to try again), but more often than not, the words he uses, are used appropriately.  So, if he already knows how to spell 2nd grade words, and he has already shown that he can and does, unprompted, appropriately use 3rd and 4th grade words, then what exactly is the point of giving him 2nd grade spelling to “learn” because he’ll “use them more”?!

Seriously.  He’s been working on mastering apostrophe use, so give him some conjunctions to learn.  Give him some of those homophone sets — like they’re, their and there — that he already has better mastery of than far too many adults.  Give him words that are exceptions to the “rules” of spelling that are taught in elementary school, and see if he can make the mental transition back and forth between spelling the words that fall into those patterns, and the ones that sound like they should, but don’t.  (Maybe you’ll hit upon something he didn’t happen to know yet….and if so, cool….and if not, well hey, maybe one of the other students will end up learning an extra word that they might not have otherwise, yet.)  I mean, ok, Ash is obviously not relying purely on the curriculum he gets at school.  In fact, we tell ourselves that if they don’t jump on our bandwagon right at the beginning, well, that gives him that much more mental energy to put into learning the non-curricular things that are harder for him, there, and he’s still learning the other things, both through us and his own initiative, at home.  At the same time, anything he learns now that he doesn’t need to, is something that, in a similar fashion, he won’t have to worry about putting his limited focus into once he DOES need to know them.  You know….later on….when the curriculum as well as the non-academic facets of being in school, are going to challenge him more.

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Autism, literacy, Halloween and hilarity

May 8, 2012 By 1 Comment

This is the Scarecrow costume design sketch that Ash did on the Magnadoodle. By the way, those aren't extra arms, that's straw sticking out.

There’s a tradition within the delightful (especially for anyone who grew up on Calvin & Hobbes and/or was a sometimes “challengingly” bright child and/or has ever worked in a school) comic strip Frazz, by Jeff Mallett.   The tradition of which I speak is that one of the main and recurring characters of the strip — a young boy named Caulfield (yes, CAULFIELD) — plans his Halloween costume each year around a literary figure, which the staff of his school are challenged to be literate enough, themselves, to guess.

Well, Ash isn’t quite there yet, but he is planning on ending his two-year Halloween run as a dragon — it’s shocking, I know! — and dressing up next Halloween as The Scarecrow, from The Wizard of Oz….which was a book we got him last Christmas and which he read shortly thereafter.  (We got the classic version of the movie from the library for him, on the heels of that.)  Perhaps I should provide a little more context for this phenomenon-of-sorts that leads to the bit with the hilarity.  See, we got the book because a like-new copy found at a thrift store for the price of spare change, was too good to pass up, and we thought, well, if Ash wasn’t ready for it then, he would be soon.  Not only was he ready, but he ate it up.  I got to prove to his teachers that he had reading comprehension skills they never would otherwise have had reason to believe he had, by having him do his reading log on the book, and having him answer questions like what The Cowardly Lion did that was brave.  He loved the story, he loved the characters, and he was engaged by their personalities and their plight….we had to “pretend” our way through him interacting with all of them, multiple times, after he was done with the book.  The Scarecrow, in particular, attracted his interest.  In fact, that character completely changed Ash’s perspective on face paint, which previously distressed him to even look at, let alone consider having ON any part of him.  I’m not sure what it was about the way that character’s makeup was done, but after seeing the movie (after seeing the illustration on the cover of his copy of the book), he was very enthusiastic about wanting to try having face-paint on him.  He even followed through with the professed intention, when Easter came, as a way of starting to get used to the sensation.

Scarecrow, Scarecrow, Scarecrow.  He insisted (and has yet to change his mind, despite things like a more recent love affair with the How To Train Your Dragon series of books) that he wanted to be Scarecrow for next Halloween.  I, “Need to make sure that he has the floppy hat with the point,” and that I, “Paint [his] face yellow-that-turns-into-[his]-neck with the brown mouth and brown triangle nose and black eyebrows” — (actually, he wants to try putting on some of this face paint himself) — and, “Make him the blue shirt with the rope belt, and the brown pants, and [he] needs boots for all that walking on the road,” and oh yes, “A crow so that [he] can pretend to try to scare it, and be silly.”  I must also be sure to not forget to make him some fake straw out of yarn, so that it can, “Stick out of [his] feet and hands and shirt and brains.”  Just in case he wasn’t clear enough, he drew me a costume design sketch on his Magnadoodle.  Early on when he was first going on with me about this idea, I asked him why Scarecrow was his favorite character.  He told me, “Scarecrow is my favorite because he keeps wanting more brains so he can get smarter and help his friends.”  Allrighty then.  I’ll take this as another one of those times when he shows remarkable empathy for a character, shows self-awareness through what he casually relates to and admires.

It doesn’t end there, though.  Oh no, he’s got it allllllll worked out.  Although I keep trying to damage-control the fact that it’s hard enough for his Daddy to get off work on Halloween, and the chances are next-to-nill-would-be-generous that the entire, semi-extended family will not only go trick-or-treating with us, but also dress in costumes of his choosing….that’s just what he thinks should and hopes will happen.

Already once before, Ash told me about what character from the story, he has assigned to what family member.  Today, he brought it all up again, and I got him to provide explanations for why he chose each match.

  • He should be The Scarecrow, “Because he likes him best because he wants brains to be smarter.”  (Yes, of course we talked again about how Scarecrow, just like him, was very smart….he just had to find the right ways to show people that.)
  • I should be the Wicked Witch of the West, “Because then [I] could pretend [I was] riding on a broom, which would be fun and wouldn’t hurt [my] leg so much.”  Also, he thinks, “It would be funny for [me] to pretend to be evil and chase [him].”
  • Daddy should be the Tin Woodman, “Because he is kind.”  (That should get extra, delighted attention from those readers of mine who know the long- and much-used nickname I gave Steffan 15 years ago, and the derivative linguistic meaning thereof.  But if you do….shush, it doesn’t belong here, as it has been used in too many other places.)
  • Uncle S- should be the Cowardly Lion, “Because of the mane.”  It would seem — no surprise here — that Ash does not agree with his uncle about the notion that all men should have hair as short as possible.  For reasons I won’t get into here, I went from finding it very amusing that Ash picked that character for this uncle (who is probably the most concerned with issues tinging on machismo, of anyone in the family), to finding it rather satisfying that Ash would just love to see him with a big ol’ mane of hair.
  • Auntie L- should be Glinda, “Because then she can have kids being her Munchkins.”  Oooh, that’s another loaded one, even if he’s just vying for a cousin again.
  • Uncle A- should be The Great And Terrible Oz, “Because he would dress us as a giant, green head on a throne.”  Well….yup.  If anyone in the family was going to think it sounded like a perfectly enjoyable idea to dress up as a giant green head on a throne, it would be A-.  Ash nailed that one.
  • Last but not least, “Grandma should be Dorothy and Grandpa should be Toto because they live together and are companions just like Dorothy and Toto are.”

Oh boy.  When I’m not fretting over how to even get all three of us dressed to Ash’s satisfaction, I’m still cracking up over all that.  To be honest, this was also one of the only things I had to post that didn’t involve editing and uploading a ton of photos. ;-P

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Today, my autistic son got in trouble for something he didn’t do

March 6, 2012 By 4 Comments

"Terence B Hairgood" by Alison Oddy of http://worldofoddy.bigcartel.com/ (The photo is linked-to-source.) If I stuck this dust-bunny-ish guy in one of those rarely-vacuumed corners, I'd giggle instead of feel guilty.

Ok, so Steffan is sick.  I’m uber-ouchy from rapid, 40-degree shifts in the weather, and wet, windy air.  I found out that the Dr’s office mixed up my referral for a Rheumatologist (which I need to get through the appointment for, before I get my referred appointment with a Pain Clinic) with someone else’s referral for a Pulmonologist.  Sure, Steffan needs one of those so that he can get his asthma back on track, but they won’t know that until he has his annual physical later this week.  As for me, all my asthma-like breathing issues come from my Dysautonomia, which would make it more fitting if they’d give me an accidental appointment with a Cardiologist, since I haven’t seen one of those in about a decade.  ENIways…  I also got nowhere with calling SSI — apparently, yet again, my legal obligation to report income month-by-month, so that they can adjust Ash’s Disability checks accordingly (not fairly, but accordingly), is not balanced by THEIR legal obligation to make it possible for me to do so.  Last but not least, I still have too much more work to do on my documentation write-ups for Ash’s Annual IEP / CSE meeting.

On the other hand, it was a good day, Ash-wise.  He woke up dry, and was ready for school early enough that we read and discussed a number of people in his new “Great Americans” book, while waiting for the bus.  He had a good day on the bus and at school, with no reported (by him or staff) trouble, being bullied, getting hurt, or potty accidents.  He whizzed through his sentences and fraction homework, got through the extra 10 spelling words and definitions he has from the 3rd grade ELA curriculum (instead of skill-leveling-up his 1st grade ELA work, they just have him do that AND some 3rd grade work), and since he had trouble deciding which chapter book to start next, he just read me an entire Ranger Rick magazine.  In fact, he made it to bedtime before he had a single ding in the day’s record.  Add on the fact that I found out an acquaintance is friends with the manager of one of the locations of Ash’s favorite pizza place and might be able to arrange a discount for a special little boy’s birthday party, and I was feeling pretty damn good about, well, everything except that stuff in the first paragraph!

Then came that darn-we-didn’t-make-it-through-the-entire-day-after-all moment, during bedtime.  The incident itself wasn’t a huge deal.  Ash was taking quite some time while using the toilet — which was fine, since he did seem to be actively trying to use it — and I let him know I was going to go use the bathroom downstairs, myself, while he was using the one upstairs.  He started to whine and argue, and rushed himself along a little too much, purely in the name of having a reason why I couldn’t walk away.  Then, a bit later, when he had finished with the bathroom routine and changing for bed, and the next step in the bedtime routine would be getting on my lap to rock and make wishes on his star, he pushed past me so that he could sit down on the rocker first.  Now, pushing past someone is rude.  In this case it was also pretty inconsiderate, since he knows that my legs are hurting, and they would feel better if I sat down.  It was also a time-waster, rarely a good choice at bedtime.  To compound things, he then tried to tell me that he’d done it because it was his job to tell me that I had made the bad choice of forgetting that he told me to go to the bathroom after I checked his beautiful, bright smile (aka, the effective tooth-brushing check), but before making our wishes.  Sooooo then we had ANOTHER little talk, about what were and weren’t his “jobs”.  We had a little talk about how sometimes what other people do might make him do things that he can’t control, but if he is deciding to do something because of what he thought about it, then it was in fact a choice, and no one can MAKE you make a bad choice just because they did, even if they did.  There are always better and worse decisions that can be made in any given situation.  We had a little talk about the appropriate use of the word “forgetting”….which is something he’s been struggling with a lot, since adding the word to his verbal repertoire.  We had yet another little talk about how he cannot control what other people do with their bodies, unless their bodies are doing something to HIS body.  Lots of little talks.

Well, that opened the floodgates.  In the wake of his apologies to me, and 3/4 of the way through his lullaby, in fact, Ash suddenly processed how to tell me about two things that apparently DID go wrong during the day, before the bedtime trouble.  He had to tell me about the other two bad choices he’d made today, he said.  Oh boy.  The first thing he told me about, was that when his SpecEd teacher was walking him to Speech Therapy, he saw that the other two boys were already there ahead of him, and without a word of warning he ran ahead by himself.  YEAH, THAT AUGHT TO HAVE BEEN DOCUMENTED FOR ME BY HIS TEACHER.  The second thing he told me about, well, I can see how that didn’t end up being told to me by anyone but Ash, but you can bet I’m going to tell his teachers about it.  It is to this incident which I refer, when I say that he got in trouble for something that he didn’t do.  That’s not really the most accurate way to put it, but you’ll see what I mean.

So far as I can put the story together, Ash’s class had a substitute in Art today.  I base this on the fact that he identified, “The long-haired art teacher,” instead of using Mrs.M-’s name as he usually does, as well as the fact that Mrs.M- had a pixie cut the last time I saw her.  It would also seem that the assignment in Art today involved a sheet with four questions, each of which got a line for writing an answer on, and a box to draw an accompanying picture in.  What rhymes with dust bunny?  What rhymes with clay?  What rhymes with glaze?  What rhymes with pinch pot?  I would like to point out that nowhere on the sheet does it specify that you are supposed to come up with a REAL WORD as your rhyme, and remind you all that my kiddo is autistic, and exactness of words tends to play a part in things.  So…

On the line for what rhymes with dust bunny, Ash put “bust cunny” — and you know, that DOES rhyme, just as his answer of “play” rhymes with clay, his answer of “blaze” rhymes with glaze, and his answer of “inch dot” rhymes with pinch pot.  It’s also no more or less of a real term, really, than “inch dot” is.  Now, Ash has no idea that “bust cunny” sounds kind of dirty, to those of us long exposed to adult slang.  He also currently has no idea that “bust” is a real word.  (Furthermore, if he did happen to know that word, I would not especially object.  I am reminded of the outrage I was once faced with, when someone overheard Ash telling me that he thought he had to go to the bathroom, because his penis felt tight.  How could I let my child spout such a filthy word?!  It was totally inappropriate!  Um….would they prefer that I taught him to refer to it not by its appropriate anatomical identifier, but as, perhaps, his schlong?  His dick?  His pecker?  His….really, there are plenty of options.  Is there some kind of law that says you have to have any male child below a certain age use the term wee-wee or pee-pee, even though those slang terms are socially used interchangeably for both penis and urine?)  So far as Ash knew, he was correctly completing the assignment, by using a common trick to come up with rhymes — just change the first letter of the word.  Ahhhh, but the substitute did not see things that way.  From what I’ve gathered, she felt that Ash was knowingly writing sexual slang of some sort, because the only obvious correct answer would have been “funny” as the rhyme for dust bunny.  I can’t accurately know the exact wording, tone, and volume of her reprimand.  I do know that Ash conveyed the impression that the reaction to his “bad choice” of writing “bust cunny” instead of “funny” was worse than the reaction to his bad choice of bolting away from his supervising staff member and running down the hallway.  I also know he felt bad about it, and felt confused because he didn’t understand WHY he was supposed to feel bad about it.  The substitute, it would seem, also failed to take the teachable-moment opportunity to explain to Ash why she felt it was inappropriate, wrong, bad.

Nope, we’re not just going to leave it there.

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The Valentine love-dragon gets a name

February 25, 2012 By Leave a Comment

Everyone, Ash would like you to meet Pete the LoveDragon!

Ash received this LoveDragon on Valentine’s Day.  Since he’s been naming his toys (including Gerald the dragon) himself, lately — and occasionally other people’s toys — I have been finding occasions to ask him what the LoveDragon’s name might be, since then.  Well, he was finally ready to answer — but, he qualified, he could not TELL me.  It seems he had to WRITE the name down, instead.  I wasn’t going to argue.  So it was that he ran to get his Magnadoodle (aka “The Dinosaur Writer Toy”….one of the tools that got a lot of use in training his grip and motor control while allowing his pressure control issues, to not BE issues at the same time), and wrote his newest dragon’s name for me.  Then, I had to take a picture, since I’m bad at remembering names.  ;-)

The funny thing is that I haven’t actually managed to get my hands on the Pete’s Dragon movie for him, yet.  Granted, the actual dragon character in that movie was named Elliot, I believe, but it would still have been a likely source of inspiration.  Ash did not want me to ask him where he got the idea for Pete’s name.

Ash did ask me if Pete had a family.  I told him that Pete was part of our family now, just like Fafnir, Amethyst, Gerald, Azul, Rojo, Flame, Sparkle, Aurora and Springtime….his other dragons.  “But,” he told me sadly, “Pete doesn’t have a Mommy and Daddy who look like him.  Like….sort of….you know that Gerald looks like a family with Azul and Rojo, and everybody knows they say that I look like Daddy but except for Mommy-colors of course.“  Naturally, this lead to a refresher talk on what does and doesn’t make a family, etc.  “Well that’s true, Mommy,” he said, “Of course, of course, you’re right.  That’s a good choice thinking, yes.  But I think Pete would like it’s fun to match, anyway.”  So, Ash decided that he, Pete and I would all PRETEND that I was Pete’s Mommy and looked like him, and he was Pete’s Daddy and looked like him, too.  (Actually, isn’t it sort of normal for little kids to get the idea that they are going to marry and end up some day parenting a child with one of their own parents?)  We then, retroactively, taught Pete how to fly and breathe fire.

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If at first you don’t succeed, keep trying until your parents figure it out

February 11, 2012 By 3 Comments

Once upon a time, there was a little prince who both noticed and remembered everything.  His Mommy sometimes still managed freakishly good memory for certain kinds of things, relative to most people — but next to her son, she was as complete a reference as an eggplant’s diary.

No, I have no idea where that came from.

[*glug*glug*glug* goes the caffeine into her]

Anyway…

Unfortunately for the little prince….and, often enough, unfortunately for his Mommy….the little prince also had language processing issues, which did him no favors when it came to trying to help his Mommy know what the heck he was talking about.  Admittedly, he also sometimes had the habit of intentionally trying to communicate via a sort of guessing game instead of even trying to directly express what he meant, but that was just icing on the frustration cake.

The other day, he was partaking of his recent tradition of sitting on his Mommy’s lap, scrolling through one of her online photo albums, and telling her all about each photo (in a tone of voice which most people reserved for delivering enlightening explanations to those who had spent a lifetime searching for the information).  In recent days, he had come to terms with the fact that the photo order and layout of the albums were periodically and unexpectedly reorganized, and so it was not until what should have been the end of the routine, that he became very upset about the absence of something he had expected to see somewhere.

“Mommy!  Where is it?!”

“Where is what, honey?”

“I think it was going to just be there soon, yesterday.”

“I’m not sure if you’re trying to tell me about something you saw before, something you were supposed to be able to see later, or both.  Maybe if I know what’s missing, I can help you find it.

“It’s lost!  You have to find it!”

“What do you need help finding?”

“But it’s not there!”

“You can point to it with your words instead of your finger.  Words can point to things that we can’t see.”

[His fingers did an elaborate dance in the air around his head]

“Can you calm your hands, or is that helping you focus on trying to find words, right now?”

“But I was trying to tell you it was something.”

“I know, sweetie, but I am still confused about what KIND of something.”

“It was something, but I think it was a person except it went….[and there went the hands again]”

“It was a person who was doing something with their hands?”

“Nooo.”

“Can you tell me something different about it?”

“The picture had [pointed to a black area of the screen]”

“There was something black in the picture?”

“Yes!”

“That….um….well, that doesn’t really narrow it down a whole lot.  Can you tell me WHAT was black?”

“It was talking to you, but it couldn’t talk.”

“Was it a person talking with sign language with their hands?  Maybe in a little box on one side of the screen, like a commercial?”

“No, I think you made a wrong choice.”

“I’m sorry, Ash, I’m trying.”

“It’s ok.”

“Do you think it would be ok if we didn’t find the missing picture right now, and just tried again later after we both had some extra time to think about what it was?”

“Nooo, I think you’re wrong again.  You have to help me NOW.”

“Well I’d love to, but I can’t figure out how to.  It’s hard to help you find something when I’m not sure what I’m looking for.”

[This time it looked like he was signing letters, but he was doing them backwards and partially hidden, from my viewpoint, because he was still on my lap]

“Ash, could you either turn around so I can see the letters you are signing, or TELL me the letters with your voice?  I can’t see your hands very well when you’re on my lap.”

“No, but I ALREADY told you.”

“What else could we try to do, to help me understand?”

“Well, I could DRAW it.”

“That sounds like a GREAT idea!”

This is actually one of the best representative pictures he's ever drawn!

[The proverbial light bulb clicked on over my head, and then went *fizzle*fizzle*POP* and blew out]

Oh.

The day before, while Ash was viewing one of my photo albums on Facebook, the sidebar had shown a random comment from someone named Dan — someone whose profile photo, appearing as a tiny icon next to his name, was a close-up of the face of a black rubber ducky.  On this day, however, no “facebook activity” from this friend appeared, and so Ash’s viewing experience of the album seemed to him to be incomplete, because he had not seen the associated and aforementioned image.  The first two finger dances were Ash doing the ASL sign for “duck”….but since stimming had been a bit issue in recent weeks, the sign was masked by the fact that he was using both hands, and adding a bunch of extra movement.  The third time he signed, he was signing letters….he was spelling out D-A-N.  His drawing on the Magnadoodle was, somewhat more obviously than I might have anticipated, of a duck.  Indeed, on the one hand, what he was looking for was a person who had been talking to me.  On the other hand, it couldn’t talk to me, because it was a duck.  It all made sense.

It all made sense, if you happened to be lucky enough to put all the puzzle pieces together and then actually remember what it was you were looking at, despite the fact that what strikes Ash as relevant to something might not even register with a typical person, long enough for them to dismiss it as irrelevant…

It was all ok, though.  Since I knew what he was after, I was able to find him the black rubber ducky picture very quickly from that point.  Thank goodness Dan hadn’t changed his photo.

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The bullying begins

February 3, 2012 By 3 Comments

What you see here was spliced to condense an assignment sheet Ash was given for MLKJr. Day. His response to the question reads, "I have dream that all people are nice to each other."

The other week, I posted about how the near-inevitable bullying had finally begun for Ash, and the implications thereof in my haunted heart.  I did not, however, get around to writing about what actually happened.  I’ve decided that the simplest way to finally get that post online — and not fall continually further behind — is to copy/paste the account of what happened, as told through my correspondences with Ash’s SpecEd teacher, Ms.W-.  These are the informal correspondences, mostly via e-mail and Ash’s traveling notebook, because they tell a more complete story, in a way, than the formal paperwork.

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1/18/12 — 4:11pm — e-mail from me to the SpecEd teacher & GenEd teacher:

Sorry to bother you off-hours, but I wanted to make sure that this got to you before I risked forgetting I hadn’t written a note yet, and faster than the paper trail from the bus driver is bound to end up getting to you.  It will be followed by a formal letter, but, again, I just wanted to make sure that I had your attention on this issue faster than I can bring myself to write more coherently and calmly about it.  Today on the bus ride home, Ash got kicked in the nose by a little girl, “Because he was annoying her” — apparently, because of his undirected chattering.  His nose was not bleeding freely, nor could I see blood at the nostrils, although Ash says he could, “Feel it bleeding on the inside,”(although this might be in part because of bloody nose injuries he remembers from friends in class last year).  It does hurt him, and it is somewhat red and swollen.  Ms.S-, the afternoon bus driver today, said she, “Talked to the girl about how Ash doesn’t really do anything to bother anyone, and if he ever touches her or anything, then she can let her know that there might be a real problem, but Ash just talking in general is no reason to hurt him, etc etc.”  She says she’ll move the girl’s seat next time, and write up a report.  She also says that this is, “A tiny little five year old who has never done anything.”

Except….apparently, this is the M- who previously called Ash stupid, ALSO resulting in extreme upset and a very tearful ride home with hysterics not easily kissed away.

Yep, apparently my 1st grade boy is being low-grade bullied by a kindergartener girl.  I wonder how often this happens with the SpecEd kids. ::sigh::  In any event, I think it’s time for some follow-up.  Ash is who he is, and if that’s enough to make a repeat offender out of one little girl, it’s not going to just stop there on its own.

Thank you,

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1/19/12 — 12:31pm — e-mail from me to the SpecEd teacher & GenEd teacher:

I wanted to add a little bit more, after having spent much of the day (that being Wednesday) discussing the previously-e-mailed events with Ash…

As noted in Ash’s original traveling notebook over three months ago, on 10/4/11, someone named M- called Ash stupid, presumably shortly before the bus ride home, or near the beginning of it.  He spent the entire ride home in hysterics, confused and hurt and shaken, and took some hours at home to recover from the incident.  No staff, including the bus driver, were aware of the cause — there were no adult witnesses, despite the fact that Ash, by nature of his IEP, is never allowed to be unattended — and Ash was not able to express himself until after the fact.  He was never able to express any of the context which lead up to the insult, though which manner of processing issue or issues are behind that particular gap in what he could communicate, I can’t know.  For example, he might not have been able to share any of the lead-in because to him, there WAS no lead-in….if he missed cues, etc.  Or, perhaps, whatever prompted the bullying was indirect from the moment, in that it was prompted by something witnessed or experienced during the school day.  Although it was Mr.G- that was the bus driver home the day Ash reportedly spent the roughly-hour-long-ride crying, so far as I know it was never figured out WHICH bus driver home Ash had even had on recent previous days, as would be relevant from a potential witness standpoint if Ash was, as his processing issues sometimes causes, reporting an experience out of temporal context.  In any case, nothing further was reported to me, or so far as I know, by anyone except me.

The following is what I originally wrote in the notebook:

Ash cried on the bus the whole way home.  Mr.G- did not know why, but Ash claims it is because, “A very serious girl from his class named M- said he was stupid.”  We don’t know if this happened during school, and he had a delayed response (he may or may not have immediately replied with, “I’m not stupid, I’m fine”), or if she is also on the bus with him and it happened there.  We don’t know what prompted the insult.  He said that she was mad at him, but we don’t know if she called him stupid because she was mad at him for something, or he just assumes she was mad at hime because she was mean.  To be fair, with his language processing even worse with him still so upset, it’s possible that the insult was less direct, that she’s said some action was stupid, but….we know he felt really hurt, and doesn’t understand why she said it.  He expressed his frustration and upset with not understanding it, too.

Also so far as I know, it was also not ever confirmed WHICH girl named M- had been the one to call Ash stupid.  There was some difficulty thinking of which M- would know Ash (not that a lot of “knowing” is always required for this kind of social issue), would ever be in the same place at the same time as Ash, and never mind have ever shown that she has an issue with Ash.

The following was Ms.W-’s initial response to me in the notebook:

The “M-” incident did not happen.  I worked with Ash in reading group with a student named [vaguely similar name], but he didn’t come into contact at all yesterday with a student named M-.  There is a girl with that name in our school in 1st grade, but it could possibly have been an incident that happened at another time.  I’d like Ash to learn that if somebody ever hurts his feelings or calls him a name, I want him to tell a teacher so we can take care of it when it happens.

And this was my reply:

We saw from last year’s yearbook that at the least there were two M-’s who might be in Ash’s grade this year; we saw from the provided class list that none are in his class this year.  Ash mixes things up verbally, though, of course, so he might have meant class, or reading group, or one of the three therapies, or even his bus, depending on how mixed-up things were in his head, with him so upset.  In any event, it came from SOMEWHERE, so we thought you aught to be aware so that you can reinforce how to deal, etc., even further at school, as well, for him.

At the time of our parent-teacher meeting on Nov. 15th, I noticed the name of a “M-” on Ash’s reading group list on the wall, and comments were made about how the incident still had to be gotten to the bottom of.

On Wednesday of this week, as noted in my earlier e-mail, a M- — possibly a kindergartener, since the bus driver said she was a tiny little 5 year old — kicked Ash in the nose while they were on the bus together.  When I asked Ash where she was sitting, he says she was behind him….though I’m not sure how she managed a kick to his nose, if that is so.  [Ash's friend MA-] was not there, so he was not sitting next to Ash on the way home, I know that much.  M-’s reason for the assault, as expressed to Ms.S- the driver, was apparently that Ash was annoying her, though the driver, who witnessed the interaction, told me that Ash was just chattering in general as he often does on the way home, and that she told M- that Ash never really does anything to bother anyone, and that if he had touched her or done anything else really TO her after she asked him not to, THEN M- would have a reason to tell the driver that there was a problem.  I have no indication that he had even been turned around in his seat, trying to talk to M-.  Ms.S- claims that so far as she had noticed in the rear-view mirror and with her divided attention between the road and the kids, Ash was just trying to tell HER about his day.  Ash reports that the only thing he said TO M- was, “Ouch, that hurt!” when she kicked him, and that he started crying a lot.  The driver told me that he cried most of the way home, although the hysterics tapered off after a while, then started picking up speed again towards the end of the ride home.  I assure you, in any case, that he was exaggerating nothing for my benefit.  Wonky modulation aside, he was certainly hurting physically and emotionally, still, by the time he was home.  His response to this incident of physical hurt was compounded by having had his feelings hurt by the same girl, previously.

The driver said she would make sure they were not sitting near each other on the bus.  Of course, the drivers keep changing.  If there was a M- on the bus route with him, I’m really not sure how they ended up still able to sit near each other, after the first incident, anyway.  I know, for Ash’s part, that he is always either right behind the driver, or across the aisle from right behind the driver.

Ash generally tells me if he’s done something that someone has told him was the wrong thing to do, even if staff haven’t told me.  Neither he nor the driver have said anything to suggest that he even inadvertently did something inappropriate, to have prompted M-’s aggression towards him, or in response to it.  As he attempts to tell the story of what happened (this time and last time, which get mixed together as he tries to process), he sometimes inserts the words, “…for arguing” kind of randomly, but aside from the sense that it was M- deciding that Ash was arguing with her, I have never deciphered how it fits into everything.  I don’t know if his “arguing” with her was why she called him stupid to begin with, or whether he was arguing with her FOR calling him stupid, or what the “argument” was otherwise about.

In talking with ME, Ash told me that he, “Thinks M- is a stupid little girl for calling HIM stupid, and for kicking him, because she’s going to get in trouble with her mommy for being a bully.”  This lead, of course, to a reinforcement talk about what kinds of responses to bullying were and were not appropriate from HIM.  It does seem, however, that he understands that it would not be right for him to call her stupid, even in response to her saying that about him, as well as that he did not actually do so.  “I KNOW, Mommy,” said Ash, “I don’t worry about her bad choices, just my good ones.”  I also talked with him about how while he certainly wasn’t stupid, it WAS possible that he was annoying M-, though doing something annoying to someone doesn’t mean he WAS an annoying person.  I asked him to think about how sometimes, everything is just too noisy for him, and he feels like he needs everyone to be quiet.  The noises they make distract him, and their voices sound too loud and bother his ears.  When that happens, someone who doesn’t stop would probably be annoying him, but there are still choices he can make about what to do.  A good choice would be to nicely ask the person if they could get more quiet because his head was hurting.  A bad choice would be to shout, “STOP TALKING!” at them while shooting his hand out to cover their mouth.  If they didn’t turn down the volume after he asked nicely, good choices would be to ask nicely again, or to tell the grown-up (from his seat, since he was still on the bus) that he had a problem and let the grown-up help them find a way to compromise.  If his talking on the bus WAS annoying M-, she had the same kinds of choices.  Calling someone names or hurting them on purpose was not a good choice to make.

He wanted to pretend he was calling M- on the phone, “To apologize to her for annoying her and hurting her ears until she couldn’t hear the good choice.”

Yes, to me, my child seems exactly like the sort of sweet-natured, oddball soul who is a shoe-in for getting bullied (apparently even by younger girls), disabilities setting him apart, aside.  Self-defense is quite the slippery slope, especially with autistic kids.  I know this is just the beginning.  I know this is mild, as bullying goes.  But let’s hope we can nip at least this early sprout in the bud.

Thanks

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1/19/12 — 2:50pm — e-mail from the GenEd teacher to me:

Hi!

Thank you for all of the information, we will get to the bottom of this to figure out what is going on and who this M- is.  [SpecEd teacher] was out today, so her and I will sit down and discuss it all tomorrow when she returns.

I am sorry this is happening to him, he does not deserve it.  No child does!

Thanks,

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During the school day on the 20th, I got a call from Ms.W-, the SpecEd teacher.  Here’s the run-down of what I learned:

  • It didn’t take long to figure out which M- Ash was having trouble with.  It is the M- in his grade that is in his reading group, and also on his afternoon bus route.  Gee.  (Also — isn’t it a bit interesting that the girl calling Ash “stupid” only spends time around him in reading group, considering his reading group is supposedly comprised of the most literate fourth of the grade, and Ash is several years ahead of any of the rest of them?  And no, no one tried to explain or excuse away the insult as the result of indignant jealousy.)
  • Mrs. D-T, the GenEd teacher and also the teacher presiding over Ash’s reading group, says that M- has never tried anything during reading group, but HAS given her the impression of being sneaky, so the reported behavior towards Ash, “Wouldn’t surprise her.”
  • The OTHER M- in the grade has a reputation, at least among the staff, for being mean.  Ms.W- says she’s never going to name a daughter M-.
  • M- lives with her father and grandmother.  When Ms.W- reached M-’s father, he said, “Oh no.  What has she done now?”  So, I guess Mrs.D-T is not the ONLY one who wouldn’t be surprised if M- wasn’t as innocent as that bus driver thought.
  • Ms.W- had a meeting with Ash, M- and M-’s teacher (M- is GenEd).  M- was confronted about her behavior, and how it was inappropriate.  It was noted that various other parties, including myself, M-’s father and her grandmother, Mrs.D-T, and the bus drivers, were being kept aware of everything.  M- did not attempt to deny anything, and in fact reasserted that she had kicked Ash in the nose because he was annoying.  She was told that Ash, “Is working on different things than she is,” and reminded that this was no reason to hurt someone’s feelings or body.  M- then added the claim that Ash had called HER stupid.  When asked if this was so, Ash said yes, but the overall impression of everyone is that he said yes pretty much because he was overwhelmed, wasn’t sure what his role in this dialogue was supposed to be, and it seemed to him that that’s what he was supposed to say.  He’ll often agree to things, right before contradicting the agreement to more accurately express a thought that has processed into words for him.  It’s a bit of a throwback to the old echolalia — he’ll try to approach the language processing necessary to accurately express himself, from the starting point of whatever was last said to him.  In any event, they went through the usual after-school-special type blather, directing at both children the rhetoric applying to both bullying and being bullied, and eventually reached what they felt was an understanding.  The kids were asked if they’d like to shake or hug on their agreement to try harder to be nice from now on.  Ash being Ash, he immediately said, “Well ok, sure!” and went with a big smile to give M- a hug.  M- whipped around with a, “No thanks,” and walked away, back into her classroom.  No remorse.  Not even pretending.  Nice.
  • Now that the bullying has started and has been called to their attention, it does not surprise Mrs.D-T or Ms.W-.  They have noticed Ash’s classmates starting to, “Take more notice,” of things like the verbal and physical stimming behaviors which are harder for him to control when his SAD is not accommodated — as it is not yet, during the school day.  In commenting on how this is part of what prompts them to continually arrange desk assignments around Ash (his desk does not move, so as not to prompt any extra motor planning issues) in light of which students seem to get along best with him and be the least bothered by him, they also reflected that there are some students is his classroom that they could imagine being sources of bullying behavior towards him.  Well great.

We talked about some of the behaviors which are attracting increasingly negative attention, and what the staff could to do help Ash avoid them.  You know….aside from providing him with a SAD therapy desk lamp.  If Ash is verbally stimming when he aught to be quiet, they can try to help him control it by suggesting to him that if he needs to hear those sounds, he can say/sing them in a quiet voice in the “thought cloud” in his head.  If it’s an issue of needing to do something with his mouth, they can give him his chewlery to wear.  If he needs more audio backdrop to be able to focus, they could experiment with giving him headphones or earbuds of some sort, and low-volume white noise to listen to.  If his hands are buzzing about, they can affix a fidgit to the bottom of his desk, keeping his fingers busy and out of view.  If he’s having trouble keeping his hands calmly down and therefore “to himself” as they walk through the halls, that issue could be addressed if they’d give him a weighed ball that it would be “his job” to carry from room to room — something I first suggested in the notebook on 10/6, and brought up again at the Parent-Teacher/Team meeting.  That same tactic would address their effort at teaching more habits of personal responsibility, his need for sensory input, work on his strength and tone, and his issue with losing focus when another class crosses his path and crowds the hallway with too much to see and hear (he can walk independently — though chaperoned — from, say, class to his PT room, except for the middle third of the trip when another class crosses the hall, at which point he either stops moving or loses track of where he’s supposed to be going, unless his hand is held)….and that’s all without taking any extra time away from his classwork, etc.  I mean, it’s not meant to be the end-all and be-all of those issues, of course, but it aught to help!  And really, is him carrying a ball around going to be any MORE conspicuous as a social awkwardness than him randomly whacking or grabbing people in the process of flapping?

We also talked about….well, all the stuff I’ll get into at the end of this post, when it comes to what we’re left with, in all this.  That afternoon, in Ash’s notebook, was another note from her on the subject:

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1/20/12 — note fragment from SpecEd teacher in Ash’s traveling notebook:

I’m glad we got to talk at length on the phone re: the bullying/bus incident.  I will speak to the bus driver at dismissal today.  I am still waiting to hear back from M-’s grandma, as well.

~~~~~~~~~~~~~~~~~~~~~~~~~

Ash went through a potty-training regression, possibly as a result of the stress from the bullying crap.  He lost the ability to tell that he was going to need to use the bathroom, far enough ahead of time to MAKE it to the bathroom.  Thankfully, when he had an accident at school, it happened to be when he was in speech therapy, not in class or specials….or reading group….and the only other child there was his friend K-, who was unphased.

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1/25/12 — note fragment from SpecEd teacher in Ash’s traveling notebook:

P.S. — I spoke with M-’s gramma yesterday and she apologized and does not want anyone to have a bad impression of her granddaughter.  She has spoken to her and M- insisted it was an accident.  Let’s hope that this is the end of the bullying.

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1/26/12 — note fragment from me in Ash’s traveling notebook:

You don’t kick someone in the nose by accident.  This wasn’t Ash tripping, falling, and ending up with his face at shoe-level while kids ran around playing tag.  M- already said that she kicked Ash because she was annoyed by him.  She admitted it to the bus driver, you, and her own teacher.  Then she, as you put it, showed no remorse for having done so.  It’s a little late to play innocent.  Did she perhaps kick-start (so to speak) this whole affair by calling him stupid by accident, months ago, as well?  I’m not out to persecute the girl or anything, and understand the deep and resonant drive to have everyone love your kid….but sorry, we’re not buying this one.  Grandma can believe what she believes, as of yet, but as for those of you responsible for Ash….please, be on his guard, because he is not yet capable of being on his own guard.  Whether from M- or others, we all know he’s a target for bullying, and it has begun.

~~~~~~~~~~~~~~~~~~~~~~~~~

So where does this leave us?

It leaves us being vigilant, providing all the proactive reinforcement we can, and keeping on the school staff about both proactive and reactive measures.  The fact is, the old after-school-special spiel really only gets you just so far when you’re dealing with reality and not an after-school-special.  If that wasn’t the case, reality wouldn’t have such a jarring amount and array of bullying, wouldn’t have just drastic and devastating results of it.  The trouble is that the spiel give you a useful set of rules to work off of….except, as I said before, bullying doesn’t have rules, because bullying is emotional, and rules are logical.  There’s no way to set yourself up to never get bullied, no way to make sure you never get bullied again.  Nothing is that clear-cut, and in the grey area are many ramifications that can turn someones best and/or most justified intentions against them, from both the bullies and those who are supposed to be protecting them from bullies.  Any sort of self-defense training, let alone physical, is a slippery slope most especially with autistic children — an irony, since they almost all could use it — thanks to a combination of issues with self-control as well as judgement when it comes to interpreting social-related subtleties and complexities.  What’s appropriate, and when, and in what ways, and to what degree?….these are almost completely beyond a child like Ash, at his age.  It gets trickier yet because Ash’s tactile sense, including his nociception (pain sense) is often “off” — so, for example, someone barely brushing him as they pass by might actually feel like a painful shove, or an attempted hit might barely register, and be akin to a light tap to get his attention.  It’s also extremely difficult for him to pick up on what is accidental and what is intentional, in terms of situational context, and while he is pretty good for an autist at reading genuine facial expression and vocal intonation, he has yet to get the hang of things like sarcasm or false smiles.  All that said, quite aside from moral dithering about what we’re teaching him, what his natural inclinations are, and/or what’s likely to get him in as much or even more trouble than his potential bullies….right now, it’s just not as much of an option as the Mamma Bear inside me wishes it was.  Perhaps, as he gets older, that will be one of the things reconsidered.  (Perhaps, as he gets older, he will actually have something closer to the motor planning, coordination and strength to defend himself physically, if taught, anyway.)  For now, we have to hope that, now that bullying has begun, the staff are more on guard against it for him (after all, he is necessarily attended at all times anyway)….and that he will indeed end up with his own aid, who can be present, if only watching from the background when possible, and will so serve the extra purpose of being a….deterrent.  Of course, the assignment of an aid might attract more bullying.  Of course, he always has an adult watching over him anyway, and the adult changing from one part of the day to the next doesn’t really change how it looks to other children.  (We once met a slightly older boy at the park.  He recognized Ash from school.  “You always have a grown-up helping you, right?”)  It might as well be a consistent aid, that will also meet other needs more reliably.  Of course, one has to wonder again how, with an adult always with him, bullying has already occurred.  Oh yes, thus far the bullying has happened during the hand-off onto the bus, or on the afternoon bus, which does not have an aid.  Go around in circles all you want, but…  It does at least leave us with yet more leverage when it comes to the push for Ash to be assigned a 1-1 aid, even, again, if that aid is watching and waiting from the background whenever possible.  Sorry, I’m pretty sure I HAVE gone around in circles.

It leaves us TELLING, not ASKING, when it comes to my being given a time slot early next school year, if not this year, to come into Ash’s classroom and give a(n updated) little lesson on how to understand and relate to some of his challenges.  I mean really, at this point, the chances of it helping are at least as good as the chances of it hurting.  It’s not going to be calling any attention to his differences, because the attention is already on them.

It leaves us….

You know what?  I’ve been working on this for hours, and that’s overlooking the fact that the post itself has been waiting for over a week.  Copy/pasting large sections of it hasn’t really helped.  It’s scary how much there is to vent, and all that’s happened is so MINOR compared to what we fear is coming.  I just have to stop.  Stop here, for now.

Because I have a smart boy, a sweet boy, who deserves for the whole world to love him….and the world has started telling him that he’s stupid, and that his getting hurt can be shrugged off, even if others tell him it’s not so.

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Autism, language processing and reading comprehension

January 14, 2012 By 2 Comments

After Ash is done reading Horton his story, Horton waits on the book for the next time.

A couple of years ago, Ash’s grandma gave him a gift set: the Jim Carrey “Horton Hears a Who!” DVD and plush Horton toy.  At the time, he was in a no-movies phase, so we’d set aside the present for another occasion, and then, by the time that occasion — and the next few of them — arose, we’d lost track of where it was.  There are only a few places in our household where Ash is completely blocked from entry, an awful lot of things that have to be kept in them, and not a lot of space to keep them organized.

In any event, the gift set was located, and slated to make a reappearance this Christmas.  Now, as it happened, a friend had been deeply touched by the video I posted of Ash reading “The Polar Express”….and, for likewise personal reasons, he had asked me to do him the favor of asking Ash for his thoughts on the “Horton Hatches the Egg” book.  There was only one problem: Ash had yet to read that or “Horton Hears a Who!”, because they weren’t among the plentiful Dr. Suess books he’d thus far inherited, been gifted, or that we’d managed to snag from the library for him.  I know, I know, but sometimes these things just happen.

Since Ash reads largely at the 4th grade level these days, we hadn’t exactly put much into the hunt lately, but with my friend’s inquiry, I knew it was time to get reservation-happy on the inter-library loan lists.  Shortly after Christmas, we finally got our hands on the book in question, and as soon as it was home, Ash ran to, “Read Horton his story.”

This is where it gets interesting.

After Ash had read Horton his story, I tried, in a few different ways, to get his thoughts on it.  He didn’t seem to be doing so well, processing-wise, but I figured I’d go for it anyway.  Sometimes these things seem to be flying right over his head into the wall, with a dramatic whooooosh and *SPLAT*, and then a couple of hours later, after some reflective processing, he suddenly brings up what you couldn’t drag out of him before.  After five, maybe ten minutes of attempted discussion and question prompts, I got to this point…

Me: Ash, do you think what Horton did in this story was a good thing or a bad thing?
Ash: A good thing!
Me: I think so too.  Trying your best to take care of someone who doesn’t have anyone else to help them, and keeping your promises even if it is hard, is a very good thing to do.
Ash: Yeah, I know.  You’re right, Mommy, yes, yes.  Horton made a thumbs-up choice for sitting on that egg.

          (Ok, we’re off to a good start.)

Me: So what do you think about what Maisey did?  Did Maisey do a good thing or a bad thing?
Ash: A good thing!

          (Ok, maybe not so good…)

Me: Really?  Why do you think Maisey did a good thing?
Ash: Because I said she did.
Me: I was listening to what you said.  I don’t understand why you think that, though.
Ash: Because Maisey was good she was lazy.
Me: Being lazy is not usually a good thing.  Because Maisey was lazy, she decided to stop taking care of her egg.  The egg was the baby she had.  Do you think Mommies should leave their babies and never come back?
Ash: No, but yes.
Me: I am still confused.  Can you find more words to help me understand what you mean?
Ash: Maisey made a good choice.
Me: So Horton kept his promise, he told the truth, and he took care of the egg when he was asked to, even though it wasn’t his, and that was a good thing.
Ash: Yes.
Me: And Maisey didn’t keep her promise, she lied, and she didn’t take care of the egg even though it was hers, and that was….can you help me?
Ash: Yes.
Me: Was it a good thing or a bad thing?
Ash: A good thing.
Me: Even though Maisey kind of did the opposite of what Horton did?
Ash: No opposites, you’re wrong.
Me: Are lying and telling the truth opposites?
Ash: Yes, of course.
Me: So then they did something opposite.
Ash: No!

          (Ok, at least one of us is missing something, here…)

Me: Ok, can I ask you something else about the story?
Ash: Well, no, because I already told you.
Me: I’m sorry, I was just trying to find a different way to understand.
Ash: You’re confuzzled!
Me:  Heehee….yes, I’m confuzzled.
Ash: It happens.
Me:  To everyone!
Ash: So Horton did a good thing.  And Maisey did a good thing.  And the egg did a good thing.  And that was the end.
Me: Did anyone in the book do a bad thing?
Ash: [struggles]…No, because if Daisy hadn’t, Horton wouldn’t have taken care of the egg.

          (OH.)

The average person, when asked if Lazy Maisey had done a good thing or a bad thing in deserting her egg, etc., would say that of course it was a bad thing to do.  Ash, however, is not the average person.  He was not judging the character’s behavior as an isolated phenomenon.  He was judging the behavior in terms of its ramifications in the big picture, from the perspective of what turned out to be in the best interests of the egg.  If Maisey had not decided to sucker Horton into egg-sitting (literally and figuratively), the baby would have been stuck with an irresponsible, selfish, uncaring, dishonest parent.  Since Maisey DID decide to desert her egg as it happened in the book, the baby ended up with responsible, self-sacrificing, devoted, caring and honest Horton, who literally gave of himself to the child, as evinced by it being born an elephant-bird when it hatched.  Now, I’m not saying that, even if Ash’s language processing was having a really good day, he would’ve been able to express it quite like I just did.  The fact is, though, that he obviously got it.  The fact is also that if I hadn’t kept trying to keep HIM trying, I NEVER would have known.  I would have assumed a lack of basic reading comprehension about a seemingly straightforward issue in a simplistic book, when it truth, Ash had a very mature and complex understanding of the issue, he just had an almost impossible time expressing it.

Take heed, school-teachers.  This is why I tell you that although his reading comprehension does not match his reading skill-level, it is far, far higher than his language processing allows it to present.

This one is for you and your elephant-bird, Horton.

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Sensory Processing Disorder, and a bad time for shorts and cropped tank tops

January 13, 2012 By 3 Comments

This was the best photo I could quickly find, for a hairdo match comparison. My apologies to those who might've hoped for a shot in which Tennant is ALSO flashing tummy under his wayward bangs. (Funny thing....in the Dr.Who "Fear Her" episode, I remembered Tennant as having said, "I've been experimenting with bad combing," not, "Back-combing"....perhaps because I was unfamiliar with the term he actually used.)

As I discussed previously, for the past couple of ill-timed winter weeks, Ash has been pushing his shirt-sleeves up to his elbows, his pant-legs up to his knees, and, at fewer points during the day, also his shirts up to his ribcage.  It doesn’t matter how tight or loose the fabric is, or what the texture is.  I assumed, for lack of anything more frustration-relieving to do, that this was due to Ash entering a period when those parts of his body were tactile-hypersensitive, and the feeling of fabric on those areas of skin was annoying, irritating, perhaps even painful.  It’s so often hard to tell, with him….even FOR him.  Ash had been having bouts of audio and tactile hypersensitivity in general, recently*, so this particular pattern wasn’t exactly out of place in the phase.

* We have had to try getting into the habit of him telling us what our voices sound like to him / asking us what our voices are supposed to sound like / us telling him what our voices are supposed to sound like / him telling us what volume he needs us to speak at, if we’re not trying to yell, if things seem amiss once they reach his ears….so that he doesn’t think we’re shouting at him when we’re just speaking at a normal, low volume, and wonder why we’re upset.  We have also had to adopt a new policy when it comes to hugs.

I’ve tried asking him why he was pushing his clothes up, why it was better to feel colder than to have clothes in those places.  He always did something like say, “Oh!  Oh!  My knees are cold, you are RIGHT!”….and then he’d pull his pant-legs down, and two seconds later hike them back up.

Tonight, I got a little further.

How he answered: “It was too distracting, so I had to make it the right size for the arms and legs and tummy parts that have to move for a hard time.”

Translation: I have to push the clothes up until they fall at the right length to not make more difficult, through the distracting feeling of them on my skin, my efforts at controlling the movement of my arms/hands, legs/feet and tummy/waist/hips.

Ok then.  He is recognizing a sensory challenge, and coming up with a way to cope with it.  It might not be the most weather-appropriate or socially inconspicuous coping mechanism, but I am still impressed.

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Flashback Friday: asking to play when you don’t know what to say

January 13, 2012 By 2 Comments

Click on the image to find it at the credited site.

Around two years ago (so Ash was 4+), on January 4th, 2010, this is how Ash worked out how to engage in play with me, when he had trouble expressing what it was he was hoping to do…

~~~~~~~~~~~~~~~

He didn’t remember…or somewhat more likely, couldn’t call up in a more processing sense, the names of “Miss Mary Mack” or “Patty Cake”, yesterday, but that’s what he felt like doing with me, at a certain point in time.  (He hasn’t gotten the hang of what to do with his hands, he just holds them out for me to clap against — he probably needs to be sitting on daddy’s lap and have daddy guiding his hands through the motions, at least one time, before he can do that part — but he enjoys the stimulation of my doing it to him, and avidly watches my mouth as he works on learning all the words….he also finds it hilarious, especially when I increase the speed as it goes on.)  So he figured out a way to express what it was that he wanted to do, with the words he could think of:

Ash:  “Mommy, y’wanna play a game wid you.”
Me:  “Sure, sweetie!  What game would you like to play?”
Ash:  “………………………y’wanna sing a song together.”
Me:  “Ok, well, we could do that too.  What song would you like to sing?”
Ash:  “………………………y’wanna clap your hands.”
Me:  “Ohhhh….you’d like to play a game where we sing a song and clap our hands.  Ash, did you want to play Miss Mary Mack, or Patty Cake?”
Ash:  “Miss Mary Mack!  Patty Cake!  Yeah, dat’s a vewwy good idea.”

Heehee.  Good thing I figured it out, too.  But I’m proud of how he worked out how to make me understand what he wanted.  I also think it’s important to note the bit where he obviously watches my mouth when he’s trying to learn a song from me.  He actually learns speech best from watching videos….there are fewer other-sensory distractions from him processing the language, in that format.  So, when he’s making a point of trying to learn something specific from one of us, he watches our mouths.  I expect it’s partially a lip-reading issue, but moreso he’s just helping himself focus and zero in on what he’s trying to learn.

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Looking back on 2011′s Christmas season (Part 4)

January 8, 2012 By 1 Comment

When Part 3 left off, we were a bit past mid-way through December, and had a rather impatient Ash trying oh so hard to be patient for Christmas.  You might be relieved to know that this update starts with December 22nd.

First off, Ash prepared for the last day of school by making a card for his teachers.  Ok, so I had to trick him into doing it by setting it up as a fake part of his homework.  I can get him to quite happily do things by pretending they are part of his homework, that he otherwise resists doing.  (Writing practice on all days that he doesn’t have homework assigned, is what this primarily comes down to.)  I think it mostly has to do with how he compartmentalizes activities, in his head.  In any event, he wasn’t given any normal homework on Thursday, so I had a gap in his routine to fill.

It says, "Happy Holidays"....then there is a heart, and a hat-wearing snowman on the snow.

Having covered a fine art, it was time for a performance art!  Yup, that’s right….you’ve heard him read a story, and now you get to hear Ash sing.  I give you: Rudolph the Red-Nosed Reindeer, in the key of Giggle!

I’m pretty sure I’m not imagining it, and he really is saying, “Used to have to call him names,” instead of, “Used to laugh and call him names.”  Hello, language processing….if you’d be so kind as to step over here, I think we need to clarify a little something…

Thursday’s other main event centered around “The Bumble” — yes, the one from the old Rudolph special.  See, we have this little stuffed Bumble-holding-a-star that Steffan found on Christmas clearance for me, a number of years ago.  It’s very soft and very cute, and most of the time we’ve just had it sitting up on a shelf next to a miniature fake tree, where it makes us giggle.  If you press on its free hand, it softly makes a roaring sound, and then shifts into playing Burl Ives’ “Holly Jolly Christmas” while doing a little wiggle-dance.  Now, Ash really likes this Bumble.  He thinks it’s hilarious.  Unfortunately, the very first time he encountered it, it got set off before he was adequately warned, so in addition to finding the Bumble hilarious, Ash finds it frightening.  It’s quite a conflict of interests.  Because Ash’s SPD-riddled brain has issues organizing information — and that includes giving it any sense of relevant chronology — and because it also gives him modulation issues….and because he also has an eidetic memory, and remembers bloody everything….Ash automatically goes into sensory-defensive mode and the feelings of anxiety and fear that go with it, every time he encounters anything that ever so much as startled him.  It doesn’t matter if he is now familiar and comfortable with whatever-it-is, likes it, desires it, and/or anticipates it.  It’s reflexive, like blinking when something comes towards your eye, even if that something is the contact you’re about to put in, that you’ve been wanting to have as an option for ages.  You can get over it in time, with effort, but simple logic isn’t going to cut it.

Well, on Thursday afternoon, after finishing his….*cough*….homework, Ash asked if he could see the Bumble.  It had yet to come out this year, anywhere in the house; with all of us varying degrees of sick all month, the tree was pretty much the only thing that got decorated.  I was a little surprised, since a toy Bumble (that didn’t even have a sound/movement feature) at the house where the Christmas party was, had terrified him on sight….but hey, you learn to roll with the inconsistencies, around here.  So, I delved into the box marked as containing “Christmas Critters” and fished it out.  Immediately, Ash bolted across the room and peeked at it — with a huge smile on his face but fear in his eyes, mind you — while hiding behind the couch.  Ok then.  He then asked me to push the button so he could hear the Bumble sing.  I asked him if he wanted me to pretend I was the Bumble wiggling and making the sounds first, and he said yes, so I did that.  That was all good, silly fun, of course.  He insisted that he wanted to hear the Bumble do it.  Well, all right.  First, I set the Bumble off, but hid him behind me so there was sound, but no visual.  I made a point of giggling as the soft fur tickled me on my back.  He cowered under a blanket he yanked over himself, while protesting that the Bumble was supposed to be in front of me, not behind me, and I had to do it again.  Are you noticing the pattern, here?  Yeahhhhhhh….things continued on that track.  While Ash thanked me and exclaimed delightedly about how it was so much fun to hear the silly Bumble sing and see his wiggle dance, and laughed at how the soft fur was so tickly, he also made a point of letting me know that we “couldn’t” push the button any more, until another day.  He reassured….me….that the Bumble couldn’t do anything unless you pushed his button, but still moved around it and generally treated it like a live grenade….that he wanted to keep in the room with him.  Or, perhaps, more like a psychotic killer, that you had to watch for any sign of impending attack.  In any event, all the way into the evening, we worked on Project Bumble, aiming to help Ash get over his reflexive and conflicted fear.  We took turns imitating it.  We talked about how he’d become afraid, and different ways we could try and help the Bumble get less scary to him.  I pretended to be scared, so Ash could comfort me.  We talked about how the Bumble might feel.  We arranged a very “safe”, controlled, and quick touch of his fur, so that Ash could feel for himself how soft it was.  We sat snuggled together under a blanket (while the Bumble sat OVER THERE) and started watching Rudolph together, for the first time, so that he could see the Bumble and see his story (with a little flexibility of interpretation, provided by me), but on the TV, where it was even easier to remember that Ash couldn’t be hurt by him.  By bedtime, we’d gotten far enough that Ash was — after running upstairs to get his Blankie, “So [he] would be safer.” — able to sit next to the Bumble, and….and this was his idea, mind you….sing the Bumble the lullaby that I usually sing for him, “So that the Bumble will sleep well.”  He wasn’t feeling confident enough to kiss the Bumble goodnight, but really, for a day’s progress, it was pretty dang good!

Ash and the fearsome Bumble

Yet again during the wish-making part of bedtime that night, Ash tacked on to his usual wishes (although he’s been expanding upon those more in general, lately) the wish that Witch Winter Grey would not come to steal him away in her Cloak of Darkness.  This is a reference to the show his class went to see, and a wish he’d been making ever since that field trip.  Lo and behold, he passed through the night safe, his dragons having done their duty.  Onwards he went, to the last day of school before winter break.

Yep, this year — possibly for no other reason than that Christmas Eve was on a Saturday — Ash had school all the way up until the 23rd.  Also possibly, with the assumption that the day before Christmas Eve was going to be a moot point, educationally, in an elementary school….someone decided to have the kids spend the full day in school BECOMING EVEN MORE WIRED.

If you equate overstimulation with, say, cocoaine, Ash’s brain overdosed that night.

But hey, you know….it’s tricky to not enable the addict when they are positively bursting with thrilled anticipation for their doom, starting two days before (when they first found out about the potential for it).  On Friday, Ash’s class was going to DRESS UP IN ELF HATS in the morning and GO AROUND THE SCHOOL CHRISTMAS CAROLING.  Then they were going to go back to their room to DRINK COCOA.  They’d fill the rest of the time until lunch by LEARNING ABOUT CHRISTMAS TRADITIONS AROUND THE WORLD.  Then, after lunch, THEY WERE GOING TO HAVE A POLAR EXPRESS PAJAMA PARTY, during which, of course, they’d watch the movie.  Ash was soooooooo excited and soooooooo wanted to do all this with his classmates.  He wanted to wear his “Christmas pajamas” to school and everything, whereas last year he couldn’t conceive of wearing his pajamas to school for pajama day, because you just don’t do that kind of thing.  Ok, so really, we couldn’t hold him back from that experience….especially not since he might handle it better than we had reason to worry he would….I mean, that sort of thing has been improving, over the years….and really, there’s a certain point at which how far over the edge you go, doesn’t really matter any more.

We were able to be there for the part in the morning with the caroling, before we had to go home to that Steffan could get ready for work.  All the kids got elf hats, some of which trailed jingle bells and some of which had lost their bells and stuck straight up like garden gnome hats (much to my amusement).  Those, they got to keep.  They also got to use an assortment of hand-bells to accompany themselves as they marched around the school and stopped at various classrooms and offices, singing.  Ash, who had been providing a several-shows-daily Christmas concert at home for months, naturally zoned out whenever it was the appointed time to sing one song or another.  In part, it was the change in routine.  In part, it was the excitement.  In part, it was the overstimulation of the activity itself for him, combined with the visual, audio and tactile effects of having 20-some singing, bell-ringing, dancing kids, plus their staff and a few supporting parents, packed into someone else’s already-full classroom.  Partially, it was the distraction of getting to be in environments not yet explored, full of people not yet interacted with, and riiiiiiiiight next to a bookshelf full of enticing, higher-grade, more-skill-level-appropriate books not yet read.  By the time they got through that first part of their day, he was exhausted, and yet still convinced that he had been fully involved, had had a blast, and was going to continue having a blast for the rest of the day.

This was an ok bell.

This was a better bell.

This is a very worn-out elf who was told he was not there to look at the books vaguely across from him.

Pooped elf is pooped.

Luckily, classmates D- (next to him) and A- (in front of him) don't hold it against him much.

Now, just in case you didn’t think it was enough that the day before SANTA COMES AT NIGHT WHEN YOU’RE SLEEPING was going to be spent DRESSING UP LIKE ELVES AND SINGING CHRISTMAS CAROLS AND DRINKING COCOA AND LEARNING MORE ABOUT CHRISTMAS AND HAVING A POLAR EXPRESS  PAJAMA PARTY, I should note that the day was slated to contain yet another unusual element of excitement for Ash.  I had….while trying not to be overly optimistic about the chances of being taken seriously….suggested to Ash’s SpecEd teacher that, since the class was going to watch The Polar Express on Friday, they might do well to give Ash the chance to sit by himself in front of the class, and read the book to his classmates, before then.  This would not exactly be extra-curricular, but would both give Ash a moment in the spotlight that he would love, and would, at the same time, shine a spotlight on something which he very much does not need extra help with — which is always pretty useful, socially, considering he’s in an integrated program.  Much to our own excitement, both the SpecEd teacher and GenEd teacher were supportive of this idea, and planned a slot of time for Ash to do it.  Unfortunately, things ran late on Thursday and he never got the chance to do it, which left Friday.  The problem with this is that part-way through a wacky and draining day of the nature of that particular day, crammed between more cocoa and a pajama party with a movie, neither Ash nor his classmates were especially….focused.  Knowing that he’d later get the chance to read a whole book to his classmates was actually another one of the things which kept distracting Ash while he was supposed to be singing….he was soooooo looking forward to it, so proud….but when the time came, he was ill-equipped to perform at his best, and they were ill-equipped as an audience.  He did get the chance to read, but things ended up with him and the SpecEd teacher next to him taking turns reading pages.  She felt this was necessary to both re-focus him — in that he couldn’t drift off-track looking at the pictures or talking about the related scenes in the movie, before turning the page, because SHE already was — and to re-focus the class, in that their attention was re-grabbed more effectively when a teacher was up there talking.  Certainly, the experience was still worthwhile, but….but it wasn’t what it could’ve been, for him or his classmates in regards to him.

Ahhh well.  He had a blast that day, and came home one last precarious surge of adrenaline short of passing out cold.  For once, he was perfectly happy about the fact that when he woke up the next day, school would be closed.  It was time for Christmas Eve!  We would watch Christmas movies….we might even drink cocoa and have our own Polar Express pajama party, since Mommy and Daddy weren’t able to stay for the one at school.  We would sing Christmas songs.  We would open the last window in the Advent calender.  Grandma and Grandpa would stop by on their way to Uncle A-’s, since both he and Daddy had to work until the evening.  We would have….well, I can’t remember what it was, any more, but we would have something he had asked for, for dinner.  He would get to help us make cookies for Santa again, and put together the special tray with cookies and cocoa and this year baby carrots (a careful 9 of them) for the reindeer as well.  And then….AND THEN….then, after bedtime, Santa would come and leave presents under the tree and in our stockings.  Would he bring Ash the silver sleigh-bell he’d asked for?  Ash had dreamed back in November that he had told Santa that Santa needed to bring his Daddy three watermelons (Steffan really likes watermelon)….would Santa be able to find any in the winter?  Mommy wasn’t so sure about that, especially since no one had written to actually ask Santa for them, so Santa wouldn’t know to ask his elves to try to grow some.  But….y’know….MAYBE.  Santa and his elves probably had a lot of magic sparkles to work with, after all, being up at the North Pole where there was already so much sparkly snow.  There was no particular reason to believe they COULDN’T be related.

Stay tuned for Part 5…

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