This happens to me all the time. Everybody does this. I can't be the
only one though and I'd LOVE your opinion as to how to politely
handle this situation.

A real life friend having forgotten a little minor detail sent me a
Youtube video that has no text captions.

So I asked her 'what are they saying?" <---------SAYING. Note this
word. SAYING. As in what are they talking about. Asking SPEECH. WORDS.

She ... did.... what ever body does, she described the scene and that
it is funny. (A ventriloquist talking to his dummy ; I assumed the guy
is a comedian and the material is supposed to be humorous.

Guess what gang! you whoooooooooo hey there!!! Guess what!!!!!!!
Guess what!!!!! This must be a huge shockerooooo to hearing people.
The dawning of the ages for them I think...


Why do hearing people think just because a deaf person can't hear,
they can't see or think (read or write for that mater) Either???


It's like how people tend to holler at blind people who have perfect
hearing.

I asked what is being said, not what is going on.

WHY do they do this??? I know. I should have more patience with the
poor "abled" people... for they two are disabled: between the ears.


Cindy


... Use the fork, Luke

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

Hello Cindy,

CH> WHY do they do this??? I know. I should have more
> patience with the poor "abled" people... for they two
> are disabled: between the ears.

It's difficult for a hearing person to imagine what it
must be like to be deaf, or to appreciate what would be a helpful approach. Did
you write back and say "Hey, I'm deaf! Any chance of a transcript?" Implying that hearing people lack intelligence is just like assuming that deaf people do: it's sweeping enough to be meaningless imo.

- Andy Ball (hearing, fwiw)

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

0n (10 Mar 08) Andy Ball wrote to Cindy Haglund...

Hello Cindy,

CH> WHY do they do this??? I know. I should have more
> patience with the poor "abled" people... for they two
> are disabled: between the ears.

It's difficult for a hearing person to imagine what it

Andy? I was fuming over sad sorry pathetic fact for years. OH yes let
us feel sorry for the POOOOOOOOr hearing person!!! Afterall the
hearing loss is THEIR Loss and for THEM to have to adjust to. OH yes.!

And it is us the hearling loss folks who have to.... COMFORET THEM!

Yes. We have to.. comfort THEM. LOL!!! what a joke.

must be like to be deaf, or to appreciate what would be a helpful

And they act like scared rabbits. Notice how they won't even use body language. They freeez up! They RUN AWAY...

I go gaga when I meet a rare gem that doesn't act like a victim when I
tell him or she is told I am deaf..

approach. Did you write back and say "Hey, I'm deaf! Any chance of a transcript?" Implying that hearing people lack intelligence is just
like assuming that deaf people do: it's sweeping enough to be
meaningless imo.

No they can't do that cuz oh ohoh oh it would be toooo costly to
enlarge their public.

OH fah de dah then. Fine.

Cindy

... Let's ponder "How come wrong numbers are never busy?"

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

Hello Cindy,

CH> Andy? I was fuming over sad sorry pathetic fact for
> years. OH yes let us feel sorry for the POOOOOOOOr
> hearing person!!! Afterall the hearing loss is THEIR
> Loss and for THEM to have to adjust to. OH yes.!

I'm not sure I understood a third of that. ;-)

CH> And they act like scared rabbits. Notice how they
> won't even use body language. They freeez up! They RUN
> AWAY...I go gaga when I meet a rare gem that doesn't
> act like a victim when I tell him or she is told I am
> deaf..

I'll put my hand up to being a scared rabbit. My
two-year-old daughter signs. We started teaching her when she was a baby because it was a convenient way for her to communicate with us. This was long before we found out that she has a significant speech delay. A speech therapist visits twice weekly, with a developmental therapist tagging along on one day a week. There's a fairly intensive effort to teach her to speak, which
is as it should be. That said, I want her to continue signing and I think it would be helpful for her to play with other signing children. I know I need to
take a proper ASL class too. I have no idea how people from local deaf community will react to a hearing dad and daughter who try to communicate in ASL.

- Andy Ball.

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi, Andy! Recently you wrote in a message to Cindy Haglund:

I'll put my hand up to being a scared rabbit.

Maybe it depends on the circumstances, but you don't come across that way to me. When your daughter needed to use signs to communicate you didn't run away screaming... you learned to use signs & taught her to do the same.

Having a disability of one's own, or a disability among one's nearest & dearest, doesn't confer instant wisdom... but it may increase one's motivation to tackle a steep learning curve. IMHO we're on the same wavelength
there. :-)

My two-year-old daughter signs. We started teaching
her when she was a baby because it was a convenient
way for her to communicate with us. This was long
before we found out that she has a significant speech
delay.

Yes. There have been many times when I did the right thing, although the "logical" reasons for it weren't completely clear to me at the time.... :-)

There's a fairly intensive effort to teach her to speak,
which is as it should be. That said, I want her to continue
signing and I think it would be helpful for her to play with
other signing children.

Our daughter attended a toddler group where signing was used together with oral speech. Many of the kids in the group had low muscle tone for various reasons & were unable to articulate speech sounds clearly. As time
went by, her articulation improved & she depended less on signing. We found the signing very helpful in those early years, however, and our only regret is that none of us is as fluent as we once were because we have less opportunity for practice.... :-)

I know I need to take a proper ASL class too.

My husband & I did that. We took an introductory course offered by a local association for people with developmental disabilities. Some years later, when our daughter was in hospital, the three of us also took a course offered by the hospital. Chances are the right course for you is out there somewhere. ;-)

I have no idea how people from local deaf community
will react to a hearing dad and daughter who try to
communicate in ASL.

All the reactions I've had were very positive. Even my crude "Sesame Street" attempts... before we'd taken formal courses... evoked a broad grin from a woman we met at the local community centre. She was tickled pink that someone else spoke her language, although I certainly didn't speak it very
well.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hello Ardith,

AH> Maybe it depends on the circumstances, but you don't
> come across that way to me. When your daughter needed
> to use signs to communicate you didn't run away
> screaming... you learned to use signs & taught her to
> do the same.

We were already signing by the time we realised she
could not speak. It did not seem at all difficult at the time because she took
to it like a duck to water. My wife already had some ASL experience and I'd dabbled in BSL years ago, though I've since forgotten all that I learned then. Just being able to communicate with our daughter is a beautiful thing. I suppose other parents feel the same way as their child learns to speak.

Thanks,
- Andy Ball.

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi, Andy! Recently you wrote in a message to Ardith Hinton:

We were already signing by the time we realised she
could not speak. It did not seem at all difficult at
the time because she took to it like a duck to water.

I imagine she was at a stage of readiness to acquire language, but for whatever reason(s) found it easier to sign than to speak. When our daughter was just over a year old I suddenly realized one day that she & I were
communicating quite well... in complete silence! I'd had no experience with ASL at that time. But facial expressions & body language come naturally when one isn't feeling too self-conscious, and babies are a very appreciative audience.... :-)

My wife already had some ASL experience and I'd dabbled
in BSL years ago, though I've since forgotten all that
I learned then.

It seems to me a lot of things I've done in the past helped prepare me for what I'm doing now. While you may not consciously remember much of what
you learned years ago, the general principles still apply.... :-)

Just being able to communicate with our daughter is a
beautiful thing. I suppose other parents feel the same
way as their child learns to speak.

We were delighted when our daughter learned to speak... it enabled her to communicate more effectively with more people. I've noticed, however, that a lot of people seem to lose their awareness of non-verbal communication once they begin using words routinely. I hope our kids never lose it.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hello Ardith,

AH> It seems to me a lot of things I've done in the past helped
> prepare me for what I'm doing now. While you may not consciously
> remember much of what you learned years ago, the general
> principles still apply.... :-)

I think our experience gets compiled into intuition over the years.

AH> I've noticed, however, that a lot of people seem to lose their
> awareness of non-verbal communication once they begin using
> words routinely. I hope our kids never lose it.... :-)

I'll second that. All I can do it try to make it available to her
and hope that she'll continue.

Thanks,
- Andy Ball.

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

0n (16 Mar 08) Andy Ball wrote to Ardith Hinton...


Yor are the moset wonderful parents in the world... to do that for
your daughter. Bless you ..

Cindy

Hello Ardith,

AH> Maybe it depends on the circumstances, but you don't
> come across that way to me. When your daughter needed
> to use signs to communicate you didn't run away
> screaming... you learned to use signs & taught her to
> do the same.

We were already signing by the time we realised she
could not speak. It did not seem at all difficult at the time because
she took to it like a duck to water. My wife already had some ASL experience and I'd dabbled in BSL years ago, though I've since
forgotten all that I learned then. Just being able to communicate with
our daughter is a beautiful thing. I suppose other parents feel the
same way as their child learns to speak.

Thanks,
- Andy Ball.

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

PS: some parrents are very status quo oriented...

c


0n (16 Mar 08) Andy Ball wrote to Ardith Hinton...

Hello Ardith,

AH> Maybe it depends on the circumstances, but you don't
> come across that way to me. When your daughter needed
> to use signs to communicate you didn't run away
> screaming... you learned to use signs & taught her to
> do the same.

We were already signing by the time we realised she
could not speak. It did not seem at all difficult at the time because
she took to it like a duck to water. My wife already had some ASL experience and I'd dabbled in BSL years ago, though I've since
forgotten all that I learned then. Just being able to communicate with
our daughter is a beautiful thing. I suppose other parents feel the
same way as their child learns to speak.

Thanks,
- Andy Ball.

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

Hello Cindy,

CH> Yor are the moset wonderful parents in the world... to do that
> for your daughter. Bless you ..

That's very kind of you to say. I think we're the most fortunate
parents in the world just to have this little girl, especially after Saturday.

My wife, daughter and I had just arrived at the pediatrician's
office to see what could be done about a respiratory infection that my daughter
was struggling with. She sat down to play with one of the toys in the waiting room and moments later slumped off her chair onto the floor. She's two, so she's always sliding off things, falling down and generally jumping around. There was something about the way she went down this time though that put up a red flag in my head. I walked straight over to her, scooped her up in my arms and told the receptionist "We need help, right now!"

To make a long story short, two ambulance rides and one bewildered emergency room later my daughter is now in the pediatric intensive care unit (PICU) of her hospital. The stroke took away use of her right arm and leg and also took away her speech. When her neurologist mentioned that "speech centres" were effected, I asked whether that meant just speech or language in general. "Ah no," he said, "signing will be impacted too". Even if it were not, it would be difficult with one arm out of action and the other featuring an I.V. line.

Instead of typing this post, I should be reading on-line about the
brain, how it works and what the implications are when it isn't able to. Her receptive language seems somewhat intact: she understands "sit up" (though of course she needs help to pull that off) and clearly understood "choose one" (apparently Dora the Explorer trumps Curious George). Only time and a small flotilla of therapists will tell how much function she'll regain.

It must be a frightening, confusing and frustrating experience to
suffer a stroke. Subsequent medical tests and treatment are painful and probably seem quite arbitrary. She is able to smile though and we even got her
to laugh a few times. It strikes me there's a powerful lesson there.

- Andy Ball

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi, Andy! Recently you wrote in a message to Cindy Haglund:

Instead of typing this post, I should be reading
on-line about the brain, how it works and what the
implications are when it isn't able to.

No, you were right the first time! Our daughter had a stroke at the
age of sixteen. You can read other stuff later & I'll type more later.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi again, Andy! This is a continuation of my previous message to you:

First of all -- while this may sound rather facetious -- I feel like
saying "Thankyou for choosing Fidonet". I agree that it's probably a good idea
to check the Internet for further information too. But one of the strengths of
Fidonet is that it *is* a small network... so when I see a message like yours I
think "Whoa, that's from Andy. I know Andy!" I realize there are other people
in this echo who can probably help & I trust they will. However, my heart goes
out to you & I feel called upon to do whatever I can ASAP.... :-)

The stroke took away use of her right arm and leg and
also took away her speech.

Okay. My aunt had essentially the same problem... and so did one of
our daughter's room mates in rehab. Both of them were unable to speak at first
but were able to comprehend what others were saying. You may find it necessary
to explain to others that your daughter is able to understand, for two reasons.
One is that there are variations between individuals depending on the extent of
the brain damage. The other is that people tend to assume lack of speech means
lack of comprehension. (You may have some experience with the latter already.)

When her neurologist mentioned that "speech centres" were
effected, I asked whether that meant just speech or language
in general. "Ah no," he said, "signing will be impacted too".

I guess sign language uses some of the same parts of the brain, i.e.
where a person has been taught to equate signs with words. My aunt was able to
use gestures of her own invention, however, within a few days after her stroke.
She indicated to my mother that she needed deodorant by imitating the motions a
person might use to apply it & she indicated to me that she was concerned about
a bill which was due very soon by pointing to the date on a magazine. It seems
to me that a lot of sign language is based on natural gestures as well.... :-)

Even if it were not, it would be difficult with one arm
out of action and the other featuring an I.V. line.

I imagine so. Eventually she will be rid of the I.V., however. And
our daughter is able to sign quite a bit with one hand.... :-)

I should be reading on-line about the brain, how it works
and what the implications are when it isn't able to.

Later. Some things will probably improve within a few days or weeks ... at which point you can read more selectively. Right now I think it is very
important that you & your wife be there for your daughter *and* for each other.

Only time and a small flotilla of therapists will tell
how much function she'll regain.

Exactly. She's young... so I'm sure she will regain a lot with time
& effort & a small flotilla of therapists. Our daughter has, at any rate. :-)

It must be a frightening, confusing and frustrating
experience to suffer a stroke.

To a small child it probably seems that way. From what I understand
a stroke itself involves little or no pain at first... but what tends to happen
is that there's some miscommunication between the brain & the nerves and/or the
affected limbs are hypersensitive. My father & my daughter both had strokes on
the opposite side of the brain from what your daughter had. Both reported that
the affected limbs often felt cold & they experienced the sensation as painful.
Then, as you say, there's all the poking & prodding & whatnot... (sigh).

She is able to smile though and we even got her to laugh
a few times. It strikes me there's a powerful lesson there.

Yes. Young children don't worry about what might happen tomorrow...
they take things as they come. As long as Mom & Dad are there, it's okay.

Hope this has been of some help! Take care & keep in touch.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hello Ardith,

AH> I realize there are other people in this echo who can probably
> help & I trust they will. However, my heart goes out to you & I
> feel called upon to do whatever I can ASAP.... :-)

That's very kind of you to say, and it reinforces my general
feeling that Fidonet (some echoes especially) is more of a community than it is
a lump of technology.

AH> My aunt had essentially the same problem... and so did one of
> our daughter's room mates in rehab. Both of them were unable to
> speak at first but were able to comprehend what others were
> saying. You may find it necessary to explain to others that
> your daughter is able to understand, for two reasons. One is
> that there are variations between individuals depending on the
> extent of the brain damage. The other is that people tend to
> assume lack of speech means lack of comprehension. (You may
> have some experience with the latter already.)

The head of her hospital's rehab department was dismissive when I
suggested that at least some of her receptive language capability was intact. My daughter has continued to exhibit comprehension of things that are said to her.

AH> Hope this has been of some help! Take care & keep in touch....
> :-)

Thanks, it has been. As yesterday she has shown some gradual
improvement in moving her right arm and hand. She clearly expressed frustration at being "nil by mouth", which I think is another sign of her own personality showing through. Hopefully tomorrow she'll be able to work more on
eating...I know she enjoys that! :-9

- Andy Ball

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

0n (03 Jun 08) Andy Ball wrote to Cindy Haglund...

Hello Cindy,

CH> Yor are the moset wonderful parents in the world... to do that
> for your daughter. Bless you ..

That's very kind of you to say. I think we're the most fortunate parents in the world just to have this little girl, especially after Saturday.

I hope I didn't embarasse you. People who do as you do take it for
granted. It's the norm. It's how it should be. I appreciate what you
are doing ; your attitude because I didn't get it that way. All the
more power to you and your family


cind

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

0n (03 Jun 08) Ardith Hinton wrote to Andy Ball...

Hi, Andy! Recently you wrote in a message to Cindy Haglund:

Instead of typing this post, I should be reading
on-line about the brain, how it works and what the
implications are when it isn't able to.

No, you were right the first time! Our daughter had a
stroke at the age of sixteen. You can read other stuff later & I'll
type more later.... :-)

Strokes can occur at any age for anyone with heart dysfunctions. I
It's just ordinarily associated with the elderly.

Cindy


... Strength of mind: Person who can eat one salted peanut.

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

The stroke took away use of her right arm and leg and
also took away her speech.

New patterning therapy has the other half of the brain taking over
for the damaged side IIRC.

Years ago (ten I think) And I'll assume there's been more on this
since- National Geographic magazine had a feature on this topic of
patterning. A little boy had endured brain damage (( forget the
details) ... one side of the brain - I think the left , yes, the 'math center'... but thanks to very intensive patterning he was able to
learn math skills... This was ten years ago or so so I know I may be
missing details here. Yet what stands out is parts of the brain CAN
take over for other parts for various functions. That's something!

((Of course if it's a physical function the 'working end' has to be
okay; no spinal damage that is or other damage.)

Stem cell research (and of course using other cells than embryo to keep
the screamers quiet) is promising for many neurological conditions.
maybe someday even hearing loss (Both Volume and Tone.)

Cind

--- PPoint 3.01
* Origin: Up a palm tree (1:124/6308.20)

Replying to a message of Cindy Haglund to Ardith Hinton:

No, you were right the first time! Our daughter had a
stroke at the age of sixteen. You can read other stuff later & I'll
type more later.... :-)

Strokes can occur at any age for anyone with heart dysfunctions. I
It's just ordinarily associated with the elderly.

My brother had one at the age of 24. It killed him. In his case it was a cerebral aneurysm that ruptured.

--- FleetStreet 1.19+
* Origin: Bob's Boneyard, Emerson, Iowa (1:300/3)

Hi, Andy! Recently you wrote in a message to Ardith Hinton:

I realize there are other people in this echo who can
probably help & I trust they will. However, my heart
goes out to you & I feel called upon to do whatever I
can ASAP.... :-)

That's very kind of you to say, and it reinforces my
general feeling that Fidonet (some echoes especially)
is more of a community than it is a lump of technology.

Fidonet seems like more of a community to me too.... :-)

You may find it necessary to explain to others that your
daughter is able to understand, for two reasons. One is
that there are variations between individuals depending on
the extent of the brain damage. The other is that people
tend to assume lack of speech means lack of comprehension.

The head of her hospital's rehab department was dismissive
when I suggested that at least some of her receptive language
capability was intact.

Arghh! We've also encountered people like that. Unless things are quite different from what we experienced, though, your daughter probably won't get much rehab in acute care anyway. I figure she'll be discharged as soon as her condition is medically stable. Then you can make other arrangements. :-)

My daughter has continued to exhibit comprehension of
things that are said to her.

IMHO you're probably right. You & your wife know this child better than anybody else does. You know what's normal for her... and you may be able to pick up on subtle clues which others miss. Ideally you & the professionals would be able to work in partnership & share your expertise. In practice that doesn't always happen, especially in institutional settings... (sigh).

As a former schoolteacher, I'd say you have a pretty good handle on the sort of task analysis which is needed here. My philosophy... as a teacher and as a parent... is "Yes, they can!" It's a self-fulfilling prophecy either way. If you truly believe your daughter is capable of doing xxx you will move mountains to help her achieve this goal. If you don't see any point in trying she may not get the support she needs. But she already has a speech therapist waiting in the wings... you know who can help once she's out of hospital. :-)

As yesterday she has shown some gradual improvement
in moving her right arm and hand.

Yes!! Some things may come back fairly quickly while others don't. I'm delighted to hear about her arm & hand. Recovery in that area often seems to take longer than in other areas because hands in particular are called upon to do very complex tasks. Sometimes it's necessary to use a different part of the brain to substitute for an area which has been injured. But kids are very adaptable, and they bounce back a lot more easily than adults do.... :-)

She clearly expressed frustration at being "nil by
mouth", which I think is another sign of her own
personality showing through.

Uh-huh. I knew our daughter had all her marbles when she noticed a sign in the emergency ward instructing everyone to turn off their cell phones, and reminded her Dad about it. That's characteristic of her too... [chuckle].

Hopefully tomorrow she'll be able to work more on eating
...I know she enjoys that! :-9

Yes... food can be very motivating! And as long as one side of the jaw can take instructions from the brain, the other side has little choice but to follow suit. I noticed one day when our daughter was yawning that her left arm moved a bit in tandem with her right arm. I found this encouraging... but one of her nurses was unimpressed because yawning is a reflex & reflexes use a different neural pathway. As a teacher, I was thinking to myself "This is how it feels when your arm moves. Okay... now let's see if you can make it happen when you *consciously intend* to do it." An OT later confirmed that mirroring actions on the unaffected side can be a very useful learning strategy.... ;-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)