phinnia: smiling dolphin face (xkcd/mrs roberts (you ate yesterday))
Today we learned about fifteen or twenty 'core signs' that we can work on with the boy, and I scheduled a full audiology assessment (the therapist who did it was an auditory integration therapist, and while I saw the printout and will have a copy of it soon, schools and other fun bureaucratic things require a full audiology signoff) for Friday morning.

The school district is trying to find a one on one with tactile sign experience as per the SLP/augcomm specialist's recommendation. And now we really need sign language instruction in home (Sean and Chris both need the hand over hand instruction and I occasionally have my own motor planning issues to work around.)

This is turning out to be pretty fun. <3
phinnia: brave little toaster, petting blanky <3 (brave little toaster)
Dude.

DUDE.

The child does not hear properly.

His actual functional hearing (not tested on the test he had when sedated - that just tested that all of the physical structures that are needed in hearing are actually there) is just - not. The signals aren't getting through.

This opens up a lot of new and interesting resources. And it may negate the autism diagnosis eventually. But it explains a LOT.

Wow.
phinnia: sandman quote with fish (delirium/fish)
Over the past few days: Kidlet's fave thing to do in the mornings is no longer 'destroy the living room when no one is looking', but instead 'come into mom and dad's room and snuggle with mom and dad until they get up'. I consider this a vast improvement.

Just now:

Boy: *sings wordless little tune*
Me: What?
Boy: *sings wordless tune, takes my hand, leads me over to the stereo*
Me: Oh, you want a CD on? *puts on R.E.M*
Boy: *looks pleased, sits on sofa, stims to music*

Words, apparently, are vastly overrated as a communication device.

Soon I have a dentist appointment, and then I'm going to the Japanese dollar store, because that's totally going to be even more fun when I'm vaguely stoned from dental anasthesia. Also I need sponges.

echo back

Jun. 17th, 2008 02:53 pm
phinnia: smiling dolphin face (zoidberg)
...

okay, so the kid has a non-traditional report card system. Scale of 1 to 4; 4 is 'objective met' and 1 is 'little or no progress'.

...

There are four '4' grades and a bunch of '3' grades there this term (significant progress). That accounts for about half his IEP objectives. (Some of the other objectives also need to be reworked after his reassessment with the speech/language tech people. that will happen next year.)

...

...

I don't think this has ever happened before.

...

good god, they're getting through to the boy.

No, really, I'm actually stunned.
phinnia: smiling dolphin face (kaylee/willothewisp)
Tonight before bathtime, child signs "time" "to" and then takes his pullup off. Independent of us doing this ever.

(conclusion: child knows the meaning of these two signs and puts them in his OWN CONTEXT.)

Sometimes my kid is hilariously awesome. <3
phinnia: smiling dolphin face (house/wilson-yay!)
SO. I heard from The Fabulous Marci, Sean's AAC specialist (alternative/augmented communication specialist) this morning.

Marci is fabulous. Marci gives me hope that this sort of thing can actually be handled, because she has Real Solutions That Can Actually Be Implemented. I want to kidnap Marci and bring her home with me.

I'm working on getting Sean in to see her again (need referral) and she's working on finding us an ABA therapist (along with the several waitlists we're on). She's going to figure out what didn't work so well about the Box Of Words, and we will try and come up with another plan.

YES YES YES. Marci is my fucking hero.
phinnia: smiling dolphin face (bunnystars)
*eyeroll* Um. NO.

Not only is the kid getting the association between "I sign for things" and "I get things" (sign --> result) but in two minutes of concentrated effort we've gotten measurable results on a new sign: "wash"

Also: increased contexual use of the spoken word 'hi'.

(I just wish it weren't all fighting uphill against the damn current all the time. *sigh*)

(feeling kind of 'bleh' today, seriously. too much to go into at the moment. tired.)
phinnia: smiling dolphin face (house/wilson-wait a second ...)
So in the Search For Military School or At Least Other Options which took place yeterday afternoon (you thought I was kidding, didn't you? Hell no.) we did find out a few things:


  • There are actually Autism With A Side Of Blindness Experts out there. They're based out of Portland. They're holding a seminar in Yakima this summer. I'm so there, dude. Or at least I want their literature.
  • The Child needs An Intensive Behaviour Plan over the summer, if nothing else, because we are lacking mojo for teaching him important things like life skills, and if he doesn't get structure he goes crazy and I want to send him to military school. Must Yell At Psychiatrist to make this happen.
  • Daycamp is worth the money. (see above note re: structure.)


Teh Spouse, because he is A Crazy Person, has musings on fandom, crackfic and a Quest for Ultimate Evil here. You should read it, for he is a Funny Crazy Person..
phinnia: brave little toaster, petting blanky <3 (brave little toaster)
Child is:

  • Independently signing at school.
  • Using a cane down straight hallways, with decent/proper techniques, trailing the wall with one hand - to the point where we need to buy a cane for home use.
  • Able to do simple puzzles.
  • Able to string large beads/put things on pegs
  • Riding a trike.
  • Participating in group reading and class things.
  • Has at least one minion/friend that likes working with him.
  • Starting to use tools/spoonfeed himself
  • Using a tactile schedule/interested in tactile books and materials

OMG.

Jan. 16th, 2008 04:05 pm
phinnia: smiling dolphin face (boy in box)
My boy is using an actual for real cane-thing. <3 <3
(more later.)
phinnia: smiling dolphin face (house/wilson-taste of victory!)
Thing 1: Seaners led his father into his room and made a word approximation that sounded like 'Madonna'. Chris put the stereo (and his favorite Madonna CD) on. Seaners laughed happily and began to stim. YAY KID!

Thing 2: This morning, after having been to Emmi's yesterday and seen the way she arranges her living room, I thought to myself, "maybe I'll buy a short sofa or loveseat and a few chairs when we replace our sofa. we should do that soon, when we have money'.

Come home to find that the babysitter found a couple of our neighbors moving their matching loveseat/chair combo to the curb as they were moving and didn't want it and just nabbed it, not knowing that we'd been discussing this topic earlier. They're a nice denim-y blue and quite comfy, and in fabulous condition.

Thank you universe~! *squee*
phinnia: smiling dolphin face (boy in box)
So the child is taking respiridal for his behavior issues, and it works well enough, except that it plays merry hell with his appetiate. Basically he doesn't feel 'full' most of the time and frequently nags for snacks. I try to keep decently healthy snacks around - dried and regular fruits, graham crackers, peanut butter and honey on whole grain bread, fruit leather, etc. etc. And he's proportionate in height and weight at the moment (75th percentile in each) so he's donig okay. I expect it doesn't hurt that he has the world's highest metabolism and enough energy to power a small city, if it could be distilled into something usable. (We actually have to drug him to sleep at night - but that's another story.)

If I give him most things, he wants more of them almost immediately.

Except fruit. If I give him a satsuma for a snack, or some apple pieces, or really any type of fruit, he's reasonably happy and will wander off to do his demonic little things (stim with toothbrush cases, listen to the same Madonna album six bazillion times a day, hide under blankets, etc.)

What's up with that? Seriously weird. What's different about fruit?


On an entirely different and more cheerful tack: Am I weird for really wanting this pink octopod chandelier? Because I really want it.

And I don't know if I should believe this story about how dude's girlfriend is now in a "secondary relationship" with his dog or not. I don't want to believe it, but I think that's just more not wanting to think about the implications, because ... oh hell, my head exploded and I have to clean that up now, okay? Bye. (not worksafe, for the love of the holy pink octopod chandelier.)
phinnia: smiling dolphin face (madeline/lines)
It's kind of like Calvinball.

Tonight, Sean tried to play 'stimmie keepaway' with Chris by holding it out of HIS reach (as in, Sean holding over his own head in an attempt to keep it away from Chris instead of the other way around - this failed to work due to Chris being taller, but the logic displayed was /great/). Then he handed Chris the stimmie and played the traditional way.

He also said 'daddy' and patted Chris's cheek. <3

(Survived mall. Exceedingly freakin' tired. Ankle still hurts. Braving TJ's tomorrow morning: pray for me.)

... and now he's grooving to the Trans-Siberian Orchestra. Well, it does make a nice change from Madonna ...
phinnia: smiling dolphin face (pondering)
Dealing with Seaners and his assorted therapists and groupies at this point is like being a geek dealing with technical support.

We keep getting the level one techs: the ones that ask all the questions and make all the plans that we've been over and over. And I know that they have methods, and that they have to gather information before they can send us up the line, and of course the higher-level techs (like all developers everywhere) are hiding in a bunker probably buried deep under area 51. But considering I don't call technical support until I've already done all the obvious things, it's frustrating to watch them go through the same steps again and again when I know it's not going to work. And we get to the top of the call structure, leave a message for the next guy and start again at the bottom of a different pyramid.

Sometimes you can skip a few steps in the chain if you can talk the talk and prove that you're not just the average user. Sometimes you can't. Depends on them, really.

I'm just waiting and hoping to get through to the level three techs right now. They're in a bunker somewhere on a ship in the bermuda triangle, I think.
phinnia: smiling dolphin face (house/wilson-irritated)
Taking the kid to the pediatrician is always fun and amusing, because they frequently want to run Medical Tests on the boy, which he interprets as CIA Operatives Obviously Trying To Make Him Spill The Beans About His Secret Base. This was even more fun than the usual, because he's actually sick this time. They had to take a throat swab. This required the intervention of five people: me, Chris, one of the nurses (all of whom were holding him down), the actual pediatrician, and a small emergency backup pediatrician (one of them took the swab, and the other paid attention to the color of his throat as he was screaming his fool head off rather than give up the location of his secret base). Best new theory: kid has strep with a side order of nightly croup.

I love this sort of thing. They always suggest that I hold him, which makes me laugh politely and dryly (heh heh heh riiiiiiiiiiight) as I suggest that he lie down on the table, and could we get another few sets of hands please? Because the boy only likes to be held if it's his idea, you see, and if I try to hold him while y'all do something he will kick you in the Sensitive Parts as he tries to get away. (I don't know how he does it, but he always manages to direct his kicks toward nads and/or breasts, whichever would be least appropriate at the time.)

He's been sleeping most of the day, and when I tried to give him a piece of Larabar (the apple and/or cherry pie ones are the only ones that aren't just weird, IMO) he made a face like it was a chocolate covered burdock wrapped in sandpaper, so I'm betting they're right on the strep thing. Last evening we spent quality time on the phone with Microsoft Dial-A-Nurse™ as Seaners had a freakout screaming croup attack. Fun times. Hope that never happens again, I'm telling you.

Totally random: the new Radiohead album is concentrated awesome. May have to shell out the $80 for the shiny boxed set with bonus tracks. Yom yom yom.
phinnia: smiling dolphin face (house/wilson-eyerub)
(a) I'm searching for people to proofread (beta-read? is there a difference) my pieces for [livejournal.com profile] wilson_fest. Poke me if you would be so kind. :-) Will pay in effusive gratitude and possibly cookies.
(2) Child is too sick to stim. Too sick to jump up and down. He's been sleeping for the past hour or so, and generally lethargic all morning. Poor little dude, he's really suffering, seriously. We're out of tylenol that isn't time release (which he can't take) and I feel like a lousy mom. bah. In my defense, the last time he had a high fever I think we may not have been living in this area code, and we definitely weren't in this apartment.
phinnia: smiling dolphin face (boy in box)
dear kid with no words,

Because you are an alien from dimension x, you do not like M&Ms. (The going theory is that you think they're pills, which I suppose isn't actually unreasonable considering you can't see them and we can't explain them to you in a way which we're certain you comprehend. Point is, you don't like them.) I bought your father and myself two packages of dark chocolate M&Ms because Dad had never had them before. I know you think that things in crinkly packages are for you and obviously must be better than the lunch you have been picking at for the last two hours, but trust me, you've already tried M&Ms and you don't like them. There are still M&Ms in the package. There are only M&Ms in the package. If you check again, it will continue to be no different until the State.Changed event fires on the package of M&Ms upon successful completion of the eat.M&Ms loop and the package becomes empty. Then there will be NOTHING, which isn't really all that interesting EITHER.

Love and no snacks until you finish your damn lunch,
Mom, who is not from dimension X.
phinnia: smiling dolphin face (machinations)
Let's All Go On An Outing!

The object of this game: to Go Out, Do Things and Return Home without causing destruction, insanity or substance abuse.

Game Board: currently, the City of Seattle. Game can be played anywhere. Bonus round for double points is played in airports, train stations, parades, concerts, special events and in malls during holiday season.

Players:
Mom (comes with accessories: crutches, backpack, harassed expression, large purse, rattling castanet like pill bottles, Random Fall Generator)
Dad (comes with accessories: white cane, irritable expression, GPS device, laptop computer, Microsoft(tm) Tracking Implant Chip)
Kid (comes with accessories: I'm-Not-Listening field generator, shoes and clothes that are removed at random, Cute Generator, Extra Long Life battery, plastic stim toy.)

Challenges Within The Game are brought up using a secret random number generator and can include any and all of the following:

Charity Keepaway: Wherein Our Heroes (the players) evade Random Do Gooders who want to (a)administer unsolicited pity (2) give unsolicited cash donations (really) (iii) attempt to remove Kid from the other players in the guise of being 'helpful' (*) ask if we have found Jesus

It's Howdy Doody Time: Wherein people ask Mom what Dad wants to do/eat/etc. even though Dad is right there and perfectly capable of talking for himself

Awkward Tennis: Wherein people stare and/or ask totally insensitive questions or make amazingly rude statements.

Accomodation Roulette: Wherein people put the bus lift down and cause the autistic five year old to Freak The Hell Out due to the noise even though Mom doesn't need it (and was trying to tell them to stop), or get pissed at Mom for taking the last seat on the bus which someone offered to Dad even though Dad said she should considering she's the one with the balance and mobility issues - but they will forget to announce the requested bus stop, even though Dad foolishly asked them to.

Denial of Karma Attack: Wherein people will attempt to give totally random, unsolicited and sometimes massively unhelpful assistance because they saw a gimp/crip/blindy/autie on TV once and they wanted to find an elevator, therefore this gimp/crip/blindy/autie obviously needs one too, except surprise! they're looking to catch the 3:30 bus to Nashville. This challenge is particularly sneaky because the attacker will become angered easily, pointing out that they were merely trying to assist (even though they did so without prompting and indeed despite protests that this was the wrong thing to do, because obviously their good intentions should absolve them - never mind the fact that the Players now have to spend the night in a hotel and take tomorrow morning's bus. (Note: This has not happened YET to that degree, but it's seriously been a very near miss on more than a few occasions.)

Nothing: Rarely, nothing happens, even though you're quite sure something will and are psyched up to avoid it.

If The Players make it home in one piece without causing insanity or death, they win.
phinnia: smiling dolphin face (house/chase cameron (parallel play))
From Sean's teacher - he made lots of new verbalizations today, and worked with the mobility specialist. (We lurrrrve when he does well with the mobility specialist.) Yesterday he actually participated in the lesson instead of drifting off and stimming (which is amazing in and of itself) and sat still to listen to a story.

Most excellent. He's settling in well. <3

picturepost

Sep. 4th, 2007 09:04 pm
phinnia: brave little toaster, petting blanky <3 (brave little toaster)
augcomm device (7 Level Communication Builder) with 3 tactile objects on a grid of 8.

This is Seaners' Box of Words. Right now it has three squares programmed into it: "drink" (little purple cap that looks like a cup), "eat" (toddler fork cut down) and "stim toy" (Chewy Tube cut to fit. (The stuff around the edges is putty to keep the grid on.)

All the kids in his class (a split class with kids from K-5 - there are about eight kids, I think, and four staff members plus therapists coming in and out - he has speech and OT and vision/mobility, some kids would have PT as well.) have devices that are somewhat like this. Most of them have picture panels instead of objects though for obvious reasons.

I can hardly wait. YAY KINDERGARTEN! Seaners got off to a good start today at the IEP meeting by sucking up to EVERYONE and giving them hugs and kisses - including the SPED principal who sat in the meeting with us. I was totally amused. :-)

Chris: We should record the panels saying "SEAN EAT NOW."
Me: We do not need to give our child Incredible Hulk voice.
Chris: Why not?
*headdesk*

more pictures: cat plus yarn )
phinnia: smiling dolphin face (gimpy/camp can't feel my legs)
The Good: Sean's IEP was today, and it went very well. No new goals as yet beyond introducing sign language (expressive) into his communication goals but it was good to meet the teachers, his new one-on-one assistant (lovely woman by the name of Cynthia) and see his new classroom, as well as getting everyone caught up on his new diagnoses (blind + autism + auditory processing disorder = SeanersXP). Everyone we ran into at the school is super friendly and nice. Sean went off to explore with one of the classroom aides and the secretaries at the office paged them when it was time to go home. He'll be mainstreamed for art, PE, recess and music classes and in the SPED communication-focus (all augcomm devices all the time!) for everything else.

The Bad: on the way home I tripped and screwed up my ankle and I think I at least pulled a tendon. Goddamnit. Walking the last two blocks was agonizing. Fortunately I have ankle brace, but holy paaaain.
phinnia: smiling dolphin face (boy in box)
Boy comes in to the room, stands with his back to me, leaning against my knees (I am sitting in a chair). Takes both of my hands, puts them down next to his legs (one on each side of his body). Lifts up one foot as if to step into an invisible pull-up.

This goes with the previous miming attempt of 'invisible toybox'. He's inventing his own full-body attempts at sign/communication. It's fascinating to watch.
phinnia: smiling dolphin face (rumi/future better than my past)
As I keep mentioning, Seaners starts kindergarten soon. (64 days. Not that I'm counting or anything.) He's going to be put in a K-5 class that stresses the use of augmented communication devices (boxes of words, like his new one) and encourages the kids to use them whenever possible. This is seriously a good thing, and I'm totally excited about it. (That was what the person meant by 'more AT support'. Fantastic.)

We're meeting with his new teacher in a few weeks (on the 20th, after we move). Is there anything I should remember to ask her? I was going to ask about supply lists, home/teacher communication, class format, and the homework issue (ten minutes per grade level, I know, although I expect there won't be a lot in his class, but I want to know that from her). But I'm sure there's stuff I'm leaving out. Help? (pass this around if you think someone might be more able to answer).

In related news: we're spending two hours with Marci the Wonderful Speech Device Specialist (the one that assessed him back in January, who has been such a help) on 27 July to get training and orientation on how best to use the new box of words. Most excellent. :-)

Books: everyone needs to read Daniel Gilbert's "Stumbling on Happiness." It's hysterical. And very informative.

...

Jun. 19th, 2007 05:34 pm
phinnia: smiling dolphin face (black eyed angels)
pssst.
C'mere. Yeah, you. C'mere.
...
...
Guess what?
...
... go on, guess...
...
... Seaners' Box of Words is currently in Gig Harbor, Washington (just south of us). They're shipping it out tomorrow morning ... providing nothing terrible happens, we should have it Thursday ...

*dee!*

*bounce*
phinnia: smiling dolphin face (boy in box)
(I'm posting a lot today because I'm sick and I have the short term memory of a fruit fly with ADD.)

Okay, so [livejournal.com profile] tallin suggested this morning that we might think about getting a medic alert bracelet or something like for The Boy, in case he ever gets lost or runs off, that basically says 'Hi! My name is Seaners. I'm blind, autistic and effectively nonverbal. My parents' phone numbers are *blah*."

Problem! The Boy is averse to accessories and doesn't care for bracelets or anything like that. (This is code for 'this will drive him to distracted tantruming until he figures out how to get it off.') So while I think this idea is fantastic, I see some clear bugs in implementation. Does anyone know of something similar to the medic alert tags that might work for this purpose? I don't think the vet will microchip his ear (shame, because that would work perfectly.)

(This is a public post: feel free to pass it around, the more brains the merrier. In fact, please pass it around. Mmmm, brains.)

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