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GhostGirl

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GhostGirl
GhostGirl

To be indulgent and post a personal update:   We made it through the summer and things have vastly improved for my son, with school resuming and a change in his meds/dosing schedule (that I researched

barney_rebel
barney_rebel

Aww take care.

GhostGirl
GhostGirl

I suppose it's just my skewed perception then.   Somehow, coming here to talk about being hit in the head and wondering if any permanent damage had been done, talking about "battle scars," and a link

GhostGirl

GhostGirl

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You can read about a trip to the dentist, autism-style...click on the link in my sig.
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Rolinda Bonz

Rolinda Bonz

Posted
Posted (edited)

QUOTE (GhostGirl @ Oct 23 2011, 11:38 AM)
You can read about a trip to the dentist, autism-style...click on the link in my sig.

great stories!

i mean, the stories themselves are hard, even tragic hug2.gif

but i luv your writing style, GG! trink38.gif

hang in there, sister! cheer.gif

 

the Really Useful Engine struck a familiar chord with me.

Tim replays scenes or even just sentences over and over again too.

some movies have SUBTITLES <-- you absolutely HAVE to try this!

(of course its a bummer when a favorite movie doesn't have that option)

but it gets worse and then better...like he can process himself past it faster or something. i dunno.

 

we fired up the ol' Augmentative Communication Device (Aug-Com) again. when we first got it, he was about 4.

he repeated things over and over so much it drove me batshit, and i gave up on him using it for its intended purpose.

the battery ran down and it got shelved for a few years.

recently he found it and put it on the kitchen counter, right in my way.

(hint, hint, Mom!) so i scouted out the ac adapter and charged that baby up.

you know what he spelled out??

 

"hellomynameisinigomontoyayoukilledmyfatherpreparetodie"

 

of course, the machine completely mispronounced it. but he kept playing it over and over.

i was listening from the couch and couldn't figure out what it was...somehow familiar. so i got up and read the screen.

 

 

ohmy.gif

rofl3.gif

 

we worked together to put spaces in and purposefully misspell some of the words so it would pronounce it correctly. laugh.gif good times! new_thumbsupsmileyanim.gif

 

Apple's iPad has an app called Proloquo2go that seems to perform a similar function. my sister linked me to a volume of 60 minutes about it:

iPadProloquo2go

 

Tim's AugCom has become his own sort of laptop.

he leaves it plugged in on the kitchen table, right next to Tyler's. wub.gif wub.gif

 

anyway, i came in here to show you this site Timothy found on our desktop computer,

and i wonder if Stephen would enjoy it too.

i can't remember, does Stephen use the computer?

 

he started with this one. I had a blast with it biggrin.gif

CoolMathGamesColorWorld

 

now he wants help with this one:

CoolMathGamesBuildABridge

 

(turn the sound off until you've had a chance to check it out yourself)

Edited by Rolinda Bonz
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GhostGirl

GhostGirl

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QUOTE (Rolinda Bonz @ Nov 2 2011, 10:47 PM)
QUOTE (GhostGirl @ Oct 23 2011, 11:38 AM)
You can read about a trip to the dentist, autism-style...click on the link in my sig.

great stories!

i mean, the stories themselves are hard, even tragic hug2.gif

but i luv your writing style, GG! trink38.gif

hang in there, sister! cheer.gif

 

the Really Useful Engine struck a familiar chord with me.

Tim replays scenes or even just sentences over and over again too.

some movies have SUBTITLES <-- you absolutely HAVE to try this!

(of course its a bummer when a favorite movie doesn't have that option)

but it gets worse and then better...like he can process himself past it faster or something. i dunno.

 

we fired up the ol' Augmentative Communication Device (Aug-Com) again. when we first got it, he was about 4.

he repeated things over and over so much it drove me batshit, and i gave up on him using it for its intended purpose.

the battery ran down and it got shelved for a few years.

recently he found it and put it on the kitchen counter, right in my way.

(hint, hint, Mom!) so i scouted out the ac adapter and charged that baby up.

you know what he spelled out??

 

"hellomynameisinigomontoyayoukilledmyfatherpreparetodie"

 

of course, the machine completely mispronounced it. but he kept playing it over and over.

i was listening from the couch and couldn't figure out what it was...somehow familiar. so i got up and read the screen.

 

 

ohmy.gif

rofl3.gif

 

we worked together to put spaces in and purposefully misspell some of the words so it would pronounce it correctly. laugh.gif good times! new_thumbsupsmileyanim.gif

 

Apple's iPad has an app called Proloquo2go that seems to perform a similar function. my sister linked me to a volume of 60 minutes about it:

iPadProloquo2go

 

Tim's AugCom has become his own sort of laptop.

he leaves it plugged in on the kitchen table, right next to Tyler's. wub.gif wub.gif

 

anyway, i came in here to show you this site Timothy found on our desktop computer,

and i wonder if Stephen would enjoy it too.

i can't remember, does Stephen use the computer?

 

he started with this one. I had a blast with it biggrin.gif

CoolMathGamesColorWorld

 

now he wants help with this one:

CoolMathGamesBuildABridge

 

(turn the sound off until you've had a chance to check it out yourself)

Thanks. smile.gif

 

We have Proloquo on the iPad - Stephen hasn't taken to it. A shame since it cost $200. He fiddles with it occasionally but never uses it for real communication. Maybe he'll grow to use it more.

 

I will take a look at those sites. Stephen does use the computer - mainly for YouTube, but he does play some games on the PBS Kids and Nick Jr. sites.

 

Oh, and he will sometimes put on subtitles when he's watching DVDs. He tends to prefer the French versions. laugh.gif

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workingcinderellaman

workingcinderellaman

Posted
Posted

QUOTE (GhostGirl @ Oct 23 2011, 01:38 PM)
You can read about a trip to the dentist, autism-style...click on the link in my sig.

Thanks for posting that link. It was good for me to read about your experience. I'm sorry you got referred away from UAB. I would think that if they have a pedo clinic they would want to have your son as a patient there. That's a good educational experience for the students. I hope this isn't too personal but I'm curious why you're getting treatment at a dental school.

 

It was interesting that the papoose worked so well. Most kids really hate them and so they're used as a last resort.

 

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GhostGirl

GhostGirl

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QUOTE (workingcinderellaman @ Nov 3 2011, 09:55 AM)
I hope this isn't too personal but I'm curious why you're getting treatment at a dental school.

Well, as I mentioned in my blog, the clinic that specifically serves special needs patients isn't willing to help with restraints.

 

I've tried private dentists, and they aren't willing to spend the time and effort to help with such a difficult case. They simply refuse. It's too dangerous for their staff, etc.

 

So, the dental school was presented to me as an option - the students are overseen by faculty, so it's not like getting shoddy care. When I found this on their website, I thought I'd found my solution:

 

"We have extensive experience coaching children who are fearful of dental treatment by utilizing behavior guidance techniques recognized by the American Academy of Pediatric Dentistry. While we emphasize verbal techniques that focus on how we communicate with a child, we can also use more advanced options such as Nitrous Oxide (laughing gas) sedation, oral sedation, and even general anesthesia depending on the specific needs of the child."

 

Bullshit.

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Rolinda Bonz

Rolinda Bonz

Posted
Posted

QUOTE (GhostGirl @ Nov 3 2011, 07:05 AM)
QUOTE (Rolinda Bonz @ Nov 2 2011, 10:47 PM)
QUOTE (GhostGirl @ Oct 23 2011, 11:38 AM)
You can read about a trip to the dentist, autism-style...click on the link in my sig.

great stories!

i mean, the stories themselves are hard, even tragic hug2.gif

but i luv your writing style, GG! trink38.gif

hang in there, sister! cheer.gif

 

the Really Useful Engine struck a familiar chord with me.

Tim replays scenes or even just sentences over and over again too.

some movies have SUBTITLES <-- you absolutely HAVE to try this!

(of course its a bummer when a favorite movie doesn't have that option)

but it gets worse and then better...like he can process himself past it faster or something. i dunno.

 

we fired up the ol' Augmentative Communication Device (Aug-Com) again. when we first got it, he was about 4.

he repeated things over and over so much it drove me batshit, and i gave up on him using it for its intended purpose.

the battery ran down and it got shelved for a few years.

recently he found it and put it on the kitchen counter, right in my way.

(hint, hint, Mom!) so i scouted out the ac adapter and charged that baby up.

you know what he spelled out??

 

"hellomynameisinigomontoyayoukilledmyfatherpreparetodie"

 

of course, the machine completely mispronounced it. but he kept playing it over and over.

i was listening from the couch and couldn't figure out what it was...somehow familiar. so i got up and read the screen.

 

 

ohmy.gif

rofl3.gif

 

we worked together to put spaces in and purposefully misspell some of the words so it would pronounce it correctly. laugh.gif good times! new_thumbsupsmileyanim.gif

 

Apple's iPad has an app called Proloquo2go that seems to perform a similar function. my sister linked me to a volume of 60 minutes about it:

iPadProloquo2go

 

Tim's AugCom has become his own sort of laptop.

he leaves it plugged in on the kitchen table, right next to Tyler's. wub.gif wub.gif

 

anyway, i came in here to show you this site Timothy found on our desktop computer,

and i wonder if Stephen would enjoy it too.

i can't remember, does Stephen use the computer?

 

he started with this one. I had a blast with it biggrin.gif

CoolMathGamesColorWorld

 

now he wants help with this one:

CoolMathGamesBuildABridge

 

(turn the sound off until you've had a chance to check it out yourself)

Thanks. smile.gif

 

We have Proloquo on the iPad - Stephen hasn't taken to it. A shame since it cost $200. He fiddles with it occasionally but never uses it for real communication. Maybe he'll grow to use it more.

 

I will take a look at those sites. Stephen does use the computer - mainly for YouTube, but he does play some games on the PBS Kids and Nick Jr. sites.

 

Oh, and he will sometimes put on subtitles when he's watching DVDs. He tends to prefer the French versions. laugh.gif

laugh.gif ye, French sarcasm.gif

 

i guess what i really meant was "closed captioning"

 

anyhow, good luck. heart.gif

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GhostGirl

GhostGirl

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My parents, who are 78 and 82 respectively, occasionally take Stephen for the night so I can get a truly good night's sleep, with my "mom radar" turned off.

 

For one thing, I don't know what I'll do when they are no longer able to help - I have no one else who is willing to try to keep him (and it's not like he's hard to keep) and sometimes, knowing that I'll get those breaks is the only thing that gets me by.

 

But then there are times like last night, when my two decidedly non-techie parents can't figure out why Stephen's iPad screen is "all black." I spent the new few hours off and on with them on the phone, as they tried together to understand the iPad's power button, how the charger fit in, etc. They're not dumb, just rarely exposed to this type of thing.

 

I ended up having to drive down to their house on my "night off," after Stephen had fallen asleep. Turned out the charger cord had gone bad, and the iPad began charging up on the replacement I brought. OF COURSE this happened at the worst possible time.

 

But...<sigh> My one night of being able to do whatever turned into a series of technical phone calls and an hour's trip. And then I couldn't relax when I got back home. The whole night was weird and now I have this stupid nerve twitching below my eye.

 

While I'm thankful it wasn't a problem with the iPad itself...just...<sigh>

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sullysue

sullysue

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Posted

QUOTE (GhostGirl @ Nov 12 2011, 08:23 AM)
My parents, who are 78 and 82 respectively, occasionally take Stephen for the night so I can get a truly good night's sleep, with my "mom radar" turned off.

For one thing, I don't know what I'll do when they are no longer able to help - I have no one else who is willing to try to keep him (and it's not like he's hard to keep) and sometimes, knowing that I'll get those breaks is the only thing that gets me by.

But then there are times like last night, when my two decidedly non-techie parents can't figure out why Stephen's iPad screen is "all black." I spent the new few hours off and on with them on the phone, as they tried together to understand the iPad's power button, how the charger fit in, etc. They're not dumb, just rarely exposed to this type of thing.

I ended up having to drive down to their house on my "night off," after Stephen had fallen asleep. Turned out the charger cord had gone bad, and the iPad began charging up on the replacement I brought. OF COURSE this happened at the worst possible time.

But...<sigh> My one night of being able to do whatever turned into a series of technical phone calls and an hour's trip. And then I couldn't relax when I got back home. The whole night was weird and now I have this stupid nerve twitching below my eye.

While I'm thankful it wasn't a problem with the iPad itself...just...<sigh>

I'm so sorry, Belle. hug2.gif

 

 

As for those facial twitches, I think those go with the territory. As long as you aren't going into full-on body spasms, you're good. laugh.gif

 

Hopefully, the next "night off" for you will go better. cosmo.gif

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Good,bad,andrush

Good,bad,andrush

Posted
Posted

QUOTE (Hatchetaxe&saw @ Feb 15 2012, 10:53 AM)
QUOTE (1-0-0-1-0-0-1 @ Feb 15 2012, 03:43 PM)
QUOTE (GhostGirl @ Feb 15 2012, 10:30 AM)
Today my baby turns 12.

This is for him.

February 15, 2012

Brilliant. Truly. smile.gif

 

Happy birthday, Stephen!

goodpost.gif Happy Birthday Stephen!

1022.gif happy birthday bro smile.gif

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Mr. Not

Mr. Not

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Posted (edited)

Finally got a public library card today so I have some more variety and options outside of my college library.

 

Today I checked out a couple of books on autism among the pile... And I was instantly reminded of the paper I did a few months back.

 

If anyone's interested, here it is:

 

https://docs.google.com/document/d/1lRHFLrp...CI6aMrSpwE/edit

 

Part 1 - information

Part 2 - personal experience

Part 3 - connecting information to my personal experience (which I could have done better)

 

Being a five to seven page essay, I had to trim a lot... So I left in what I thought was most important and relative. Reading over this I realize I should have explained more about "floortime" than I did...

 

My research was on general info about ASD, and the Floortime model:

http://www.icdl.com/dirFloortime/WhatisFloortime.shtml

 

 

 

As someone who isn't a parent, I apologize if I make anything sound so easy that it's upsetting. I'm not leading a son or daughter with ASD through every step of their life, my job is pretty strictly part-time. and I always try to be as positive about autism as I can since it isn't something that's going away. Frustrating as it may be, there's always good to see as well. Everyone I've met with ASD is admirably honest, and I can't get enough of that.

Edited by Ovningskora
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GhostGirl

GhostGirl

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You've done a good job on the paper. I would point out just a couple of things though. The "Floortime" approach has been around for a long time and wasn't just developed in '06. When my son was diagnosed in '02 there was already a multitude of Floortime articles and papers.

 

Also, I have to say that compared to the "low functioning" individuals you reference in your paper, my son would be considered sub-sub-sub-sub-sub-low functioning. While the approaches and interventions you see working successfully may fit perfectly with the "low" individuals you know, just be aware that in my world, people with those kinds of skills and mental acuities would be considered moderately autistic. My son is 12 and barely speaks, wears diapers, and has the mental abilities of a two-year-old...on a good day.

 

But I must applaud your commitment and your responsibility. We need more people like you in the world. yes.gif

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Mr. Not

Mr. Not

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Posted

QUOTE (GhostGirl @ Mar 14 2012, 05:53 AM)
You've done a good job on the paper. I would point out just a couple of things though. The "Floortime" approach has been around for a long time and wasn't just developed in '06. When my son was diagnosed in '02 there was already a multitude of Floortime articles and papers.

Also, I have to say that compared to the "low functioning" individuals you reference in your paper, my son would be considered sub-sub-sub-sub-sub-low functioning. While the approaches and interventions you see working successfully may fit perfectly with the "low" individuals you know, just be aware that in my world, people with those kinds of skills and mental acuities would be considered moderately autistic. My son is 12 and barely speaks, wears diapers, and has the mental abilities of a two-year-old...on a good day.

But I must applaud your commitment and your responsibility. We need more people like you in the world. yes.gif

I see. I'm probably going to write an entirely new research paper on floortime (and just floortime this time around) rather than editing this one though (it's good to keep track of progress). I've been trying to find out information on the autism spectrum, but I can't find a very good source. At the time of the paper, I wasn't even aware of Rett, CDD, and Not Otherwise Specified, but only Aspergers. It still seems to me there should be more... What would be a more specific description of Stephen on the ASD scale?

 

The inaccuracy about floortime's silly on my part tongue.gif looks like it started in the late 1990's. I don't have much an excuse other than I had a very hard time finding sources for this paper (at the time) and my psych 1a class didn't touch on autism much at all, but instead just explained DSM a bit.

 

 

 

Thanks for the compliment, very flattering, made my day biggrin.gif I sure hope I'm just that.

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