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.

“Well, the rules are there to keep people safe, right?  So I think if there are more rules about love, they should probably be to make people love more, not to make them love less, of course.  No one is safer if people act like they love each other less.”

There you go, folks.  You know, sometimes it’s a very nice thing that my autistic child doesn’t think like ‘most people’.

We know "gay people" in happy, committed relationships. Can't you tell that our family is crumbling? CRUMBLING, I TELL YOU!!

]]> http://unhandicapping.com/marriage-equality-controversy-think-of-the-children/feed/ 1 http://unhandicapping.com/its-aliiiiiiiiiiiiiiiiive/ http://unhandicapping.com/its-aliiiiiiiiiiiiiiiiive/#comments Fri, 26 Oct 2012 01:43:50 +0000 FroggyPrinceMom http://unhandicapping.com/?p=7238 So.  First, we were dealing with preparations for a move.  Then, we moved.  Then, we dealt with the aftermath of moving.  Then, my computer died.  Well, it’s still dead, but this is my first chance to use someone else’s computer long enough to get back here to the blog.  Holy crud, is there a lot to update around here!  Sorry about that, if you’re one of the disappointed people.  I’m working on it…

Did you catch the bit about how he’s moving on to the 2nd grade?  Good, because that’s the context of this post.  Ash did it!  He graduated from another grade, while in an integrated program, in the first try, for the second time!  I am so proud of him!!  And, because I have friends that are lovable dorks and who notice my inquiries to other friends into the existence of coupons which would help me get him certain things as a graduation present, sometimes those graduation presents actually come from someone else.  Someone else who needs to be tackled by the child they blame their impulse on.  *cough*

Ash opens the box.  Not so long ago, he might have had trouble getting to that point before he had finished examining the box.

Ash checks out his new dragon.  He likes that it’s so soft, as well as that it’s shiny and green with glittery gold parts.

Ash notices the strap-on wings.  Build-a-Bear probably did things that way because most of their animals get dressed in little outfits, but since we’re us, Ash learned the word ‘prosthetic’.  Of course, he immediately thought that we should bring his new dragon to the zoo to show the prosthetic wings to the zookeepers and suggest something similar for the one-winged birds that they take care of.  If they are unconvinced, he will make them watch the How To Train Your Dragon movie with him, where, of course, another dragon flies again with the help of a prosthetic half-tail.

Ash is pretty proud of his idea.

Now Ash wants to know about the pendant-style tag on a gold cord around the dragon’s neck.  The tag notes that this is a limited edition critter in honor of The Year of the Dragon, (and features what Steffan would like to note is a horrible rendition of even the simplified form of the Chinese character for ‘dragon’).  I explain.  Ash points out — oh, I’m so proud! — that this does not look like a Chinese dragon, and wants to know if perhaps the explanation was that it was adopted by a Chinese dragon family.

Ash reassures his new dragon that this is the last time he will have to be adopted, because now he is part of OUR family.

Ash is pleased to get confirmation of this notion from both Mommy and Daddy.

“And you will help the rest of my dragon family guard my castle at night so I can be safe to go on dream dates with Mommy.”

It occurs to Ash to ask whether I have to pack up his dragons for the move yet, or if they can continue guarding his castle.

Oh.  Oh, it’s ok.

Whew!  That’s a relief.

He wasn’t so sure about that.

Now that we’re all feeling secure, Ash decides it’s time to name his new dragon.

“The first part of your name is like your color, and I think the last part is “full” because you are full of shiny green….your name is GREENFUL!”

Ash thinks it’s pretty darn cool that he got Greenful BECAUSE HE GRADUATED FROM 1ST GRADE.

It’s also worth giggling over.  Of course, pretty much everything is worth giggling over.

Ash shortly discovers that Greenful doesn’t just like to cuddle and giggle and prove that he can fly, but that he also likes to fly INTO people and gently bonk their heads with his own, just like he used to as a baby, as a way of introducing himself.  Greenful earns the nickname “Bonk”….not bad for someone who has been hanging out with us for less than an hour.

Attempts are made at two-way flight patterns for Bonk.

But for some reason, Bonk prefers flying at Ash.

Ok, this time he’s ready and waiting for it.

GOTCHA!!!

Welcome to the family, Greenful aka Bonk.  You’ll find lots of love here.  Thank you, Steve, for sending him to us….at Ollie’s insistence or otherwise.

He hadn't even gotten his shoes off and gone downstairs yet.

So.  Ash came home from school today, making it official — he only has 2½ days left of 1st Grade.  Ahhhhhhhhhhhhhh!

I’m not done screaming, no.

See, as soon as he got home, he checked the folder in his backpack JUST IN CASE they decided to send home any homework, after all. This is despite the fact that they haven’t sent any since two weeks ago, and he read on the class notes that they didn’t intend to.  But of course, at the start of the school day — with all that fresh, sensory chaos around him — he’s usually too distracted to remember to check his folder for things he’s supposed to hand in, unless one of the staff asks him if he’s done it yet.

There’s a time-sensitive form for the summer program that made it home to us last week, which we were asked to return ASAP. We did, but it sat in his folder for days. I pointed that out today, and the response was that it’s Ash’s job to take things from his folder.

Look, I know it’s a skill they’ve been working on with him. I know that, when it came to his homework, they knew I always had him do it and were more interested in seeing if he focused enough to hand it in on time, than they were in actually getting it on time.  But if they KNOW there’s a time-sensitive form we’re returning, don’t you think it would make sense to check for it themselves, and not rely on him to do something they KNOW he can’t yet be relied upon to do by himself?

Sheesh.

I find it strangely hilarious that the nurse says things like, “You don’t sound happy to hear from me,” after I acknowledge that I’m me and that I know that she is her (she is programmed into my phone separately).

Who is happy to hear from the school nurse?!  This isn’t even like the reflexive anxiety that comes with ANY call from the school.  I’m pretty sure calls from the nurse are NEVER good.  Does anyone get calls going, “Hello! I just wanted to tell you that your child bounced by my office today in a blur of healthy energy!” or, “Good afternoon! I thought I’d call and tell you that I saw your child walking by my office with his class, and he was the one child NOT trailing snot. His color was EXCELLENT,” or, “I just want you to know, with the school year ending, that your child has fallen remarkably below using his quota of band-aids”…?!  I don’t get random calls because the nurse just had to share with me the ADORABLE story of how when Ash was at the school breakfast they made the mistake of sitting him near someone eating cereal, and he immediately gagged and threw up on himself.  I don’t get little notes written about how FUNNY it is, how many ways a sensory kid can manage to hurt themselves semi-intentionally.  You don’t walk down the hallway and school and get that hand on your shoulder to get your attention, so the school nurse can just say hi, and let you know it was really SWEET how your kid caught the nasty stomach virus going around.

I can’t really feel sorry for her, either, because in the grand tradition of nearly all school nurses that have been in my life, her rough gig is coupled with a bad attitude.  My kid doesn’t have a crap immune system on purpose, or even because of bad habits….he has a crap immune system because he was born before he bloody well had developed one at all, and “catching up” after the fact only works just so well.  If his teacher has to rummage through your stash of spare changes, it’s because he’s already used up the personal ones we always provide, and that’s because he’s had to void between the times he’s given pre-scheduled toileting breaks, and the school system has not yet grasped the fact that an aid can allow him whatever independence is possible and vital to his development and optimal function in school, and yet still do things like watch him for signs that he’s about to have a potty accident because his ability to recognize the sensation of a full bladder or upset bowels is not functioning that day, and he needs a cue to know that he needs to use the bathroom.  If I am called to pick up a sick Ash from school and can’t get there within 5 minutes, it’s not because I don’t care, it’s because my efforts have not yet procured a safe way to retrieve him….which, by the by, would take more than 5 minutes even if I could drive on the spot and pick him up myself, because he attends a school program that we are not zoned for.  Oh?  And the fact that the one time I saw her that wasn’t directly related to Ash being sick or injured, was when she was at an IEP meeting, doing her best to make it harder for him to get the therapy lighting he needs?  NOT HELPING.  I mean, I try not to bury potential school nurse relations under my baggage from, say, when one of my school nurses almost killed me (not exaggerating) through idiocy and negligence.  But, seriously….this relationship has been established, and I am never going to be happy to hear from this woman.

For the record, Ash is fine.  Nothing was interfering with his movement, and his nociception is tending towards the, “Huh?  I got hurt?” right now, so he was more annoyed on the tactile front by the need for band-aids, than he was bothered by the cuts, scrapes and bruises themselves.

Little boy knees...

...after a few days of healing.

]]> http://unhandicapping.com/a-phone-call-from-the-school-nurse/feed/ 2 http://unhandicapping.com/happy-fathers-day-2012/ http://unhandicapping.com/happy-fathers-day-2012/#comments Sun, 17 Jun 2012 13:38:56 +0000 FroggyPrinceMom http://unhandicapping.com/?p=7146 Happy Father’s Day to ALL the true Daddies I know, including surrogate daddies, foster daddies, adoptive daddies, step-daddies, would’ve-been-daddies, trying-to-be-daddies, daddies-in-the-making (pregnancy totally counts, if you’re both taking the right care), daddies who lost their children, daddies lost *by* their children, critter-daddies, in-loco-parentis daddies, fathering spirits, single moms and gay moms who act as daddy too, and whichever other varieties I inevitably forgot while writing this.  HUGE bonus points go special needs daddies.  Bonus points also go to daddies who are true, rockin’ daddies, despite having had only varying degrees of negative example, from their own fathers.

Most of all, happy Father’s Day to Steffan, that wonderful brand of Daddy who earns the title and still always strives to do more and better with it!

If you keep clicking on this photo until you see it at the largest size I could load here, you won't lose QUITE as many of the cute details.

Every year, I try to make Steffan a collage for Father’s Day, of photos of him and Ash that have been taken since the LAST Father’s Day. (You can see a few previous ones — the first three, actually — HERE.  Unfortunately, there are some years for which the creation or retrieval of said collages was/is made more difficult by computer issues.)  I consider it a very good thing that it’s always hard to choose only as many as will fit. I also try to include a quote at the bottom which reflects something he’s heard a lot of, that year.

Ash and I are so blessed to have Steffan as his Daddy! I can’t imagine doing this without him, or with anyone else.

“As amazing and awesome as he is, how could he not aspire to that?!?!?! I, for one, would be honored if, someday, someone so incredible chose to pursue my daughter… and I hope I’m raising her to understand that she should be too! ”

What mother wouldn’t love hearing that about her son?  Well….ok, what mother who doesn’t want to keep her son a little boy following close at her heels forever, whether or not he’s capable of more, wouldn’t want to hear it?  (Switch to the cliché-for-a-reason of overprotective Daddies and their little girls, if you like.)  And of course, I’m not just any Mommy, and Ash isn’t just any son.  Sadly, it is also probably relevant to note — in case you didn’t infer it from how the quote was written — that the friend’s daughter in question is “just any”, in the sense that she is neuro-typical.  It already hit me hard when romantic prospects were casually laughed about in only the best-natured of ways, when the future partner for Ash that was speculated about between glompings was also a special-needs child.  There is a whole ‘nother edge to it when you’re hearing it like this….when you’re hearing it from someone who knows that normally, eventually, how cute (in more than one respect) Ash is, is likely to be overshadowed by how different he is, how challenging things are for and with him.  I mean, it’s only natural for me to feel that he deserves for the whole world to love him, and that such will be true even when it comes to romantic love (if it turns out that that’s indeed in his matured nature, and in his future — a doubly loaded question with Autism).  I’m me, though, and we’ve been over that.  I also know, though, that it’s not in everyone’s nature.  In fact, it’s not in a LOT of people’s natures, especially if it’s not already more than the typical concern for their own children.

So thank you, Julia.  Thank you for not being most people, and for trying to raise your daughter to not be most people.  The world really can’t get enough of people like you, because the world really does have a lot of people….overlooked, misunderstood people….as incredible as my son.

The photo valentine I made in 2009, playing up to what a heartbreaker Ash had always been and still was, and amused by the fact that "aloof" is not really him at all.

“It’s true, your teachers aren’t sending any more homework home this week.” — Me

“Did the TEACHERS get that right?” — Ash

“Well you know, sweetie, it’s not something to worry about. You can still read, and practice writing to your friends, and I can even give you math problems to learn more tricks for, if you like.” — Me

“Oh. Well that’s ok then.” — Ash

…

“Mommy, where’s the notebook? I think I need to write a note and take a marker and give the teachers an incomplete, because they didn’t finish GIVING us homework, and even if you make mistakes, you’re still supposed to try.” — Ash

He's reading the "How To Train Your Dragon" book series right now. Is anyone surprised? Anyone? Anyone? Bueller?