Re: Labels
Julie Stauffer
<<Labels everywhere>>
I did that this summer for Marsie (5) who really wants to learn to read.
The kids looked at them for a couple of days. We played treasure hunt with
clues taking you from label to label, etc.. Then the kids didn't seem to
pay any attention to them at all.
I was gone with Adriane and Zach to a stock show over the weekend and when I
got back, Dh had removed all labels, declaring that his compulsive heart
couldn't stand the clutter anymore. He had asked Marsie if it was OK with
her and she said sure, that she could now read (this was news to us). Dh
held up a card and asked her what it said and she gave him the correct
response.
Apparently she was soaking it up even if it didn't look like it.
Julie
I did that this summer for Marsie (5) who really wants to learn to read.
The kids looked at them for a couple of days. We played treasure hunt with
clues taking you from label to label, etc.. Then the kids didn't seem to
pay any attention to them at all.
I was gone with Adriane and Zach to a stock show over the weekend and when I
got back, Dh had removed all labels, declaring that his compulsive heart
couldn't stand the clutter anymore. He had asked Marsie if it was OK with
her and she said sure, that she could now read (this was news to us). Dh
held up a card and asked her what it said and she gave him the correct
response.
Apparently she was soaking it up even if it didn't look like it.
Julie
Nanci Kuykendall
>It's worth reading about Fetal Alcohol Syndrome justso you >have some information on the side. It's not
something adoption >and lots of love can overcome
entirely.
>SandraThis is the same reason that identification (labeling)
of developmental or other differences can and does
provide a lot of help, for those they are applied to
and for those they live with. As a parent it gives
you a whole new toolbox to look into, new places to
look for ideas and answers to behaviors that may be
totally baffling to you and are hurting your life or
relationship with the person affected or in question.
It gives you a way to connect yourself to others who
are struggling with similar challenges to network and
help each other, or just find understanding friends.
It's a huge relief also to know that your child's
challenges are not because you're doing a horrible job
as a parent. The hard work you do of parenting
differently challenged kids can be recognized and
acknowledged as well, even if just in your own heart.
For a person to whom the lables might apply they help
you to understand yourself and your own needs better,
help you to meet those needs better and create coping
mechanisms that are healthy and positive while not
thinking you are broken or stupid or what have you.
Knowing there is a reason for your thoughts, feelings
or actions can be extremely reassuring and emotionally
a huge relief. A diagnosis or label does not become
an excuse, but it is a *reason* that can be looked at
and studied and addressed. It's a starting point.
For dealing with other, including extended families,
having some labels can help you to lead them to
information to help them understand the affected
person better and to be more tolerant and accepting of
their needs. It's VERY common for extended families
or other peripheral people in your life to have a
complete turnaround in their attitude and behavior
towards (for instance) your high functioning autistic
child when they understand that this is real, no they
are not just "a brat" and you are not a bad parent or
crazy or something. While there is something to be
said for writing off those unwilling to accept and
love your family as they are, there is also much to be
said to meet them halfway by providing information
they can understand and allowing them to learn through
that method what you have learned by living with the
affected person(s.)
After all, even a ton of "normal" social behaviors can
look totally bizarre and have an adverse affect on
people socially if you don't have background
information about the behaviors or about the person
doing them.
Nanci K.
Sandra Dodd
On Jan 8, 2006, at 6:44 PM, Nanci Kuykendall wrote:
Sometimes it does become an excuse.
So when you talk about things in broad terms, please be careful to
qualify your statements. You can't speak for everyone or every
situation.
-=-It's VERY common for extended families
or other peripheral people in your life to have a
complete turnaround in their attitude and behavior
towards (for instance) your high functioning autistic
child when they understand that this is real, no they
are not just "a brat" and you are not a bad parent or
crazy or something.-=-
That's fine, but unschooling will still work .
Few families of ANY unschooled kid will go long without thinking or
saying that the parents are crazy or bad or the kid is a brat. That
will pass, but it happens to most unschooled kids and parents.
I think looking for differences is less helpful on a list like this
than looking at similarities.
Sandra
> A diagnosis or label does not become-=----------------
> an excuse
Sometimes it does become an excuse.
So when you talk about things in broad terms, please be careful to
qualify your statements. You can't speak for everyone or every
situation.
-=-It's VERY common for extended families
or other peripheral people in your life to have a
complete turnaround in their attitude and behavior
towards (for instance) your high functioning autistic
child when they understand that this is real, no they
are not just "a brat" and you are not a bad parent or
crazy or something.-=-
That's fine, but unschooling will still work .
Few families of ANY unschooled kid will go long without thinking or
saying that the parents are crazy or bad or the kid is a brat. That
will pass, but it happens to most unschooled kids and parents.
I think looking for differences is less helpful on a list like this
than looking at similarities.
Sandra
Gold Standard
On Jan 8, 2006, at 6:44 PM, Nanci Kuykendall wrote:
children's challenges as an excuse, and I'm having a hard time imagining
this.
four of my children whole and shining as who they are. I hope nobody reading
this thread or any of the posts here would think because their child may
have some extra kind of attention/physical/emotional needs, that they
couldn't unschool! It is SOOOO the opposite! Unschooling rocks for all!
Thanks,
Jacki
> A diagnosis or label does not becomeDo you have an example of this Sandra? My circles tend not to use their
> an excuse
>>Sometimes it does become an excuse.<<
children's challenges as an excuse, and I'm having a hard time imagining
this.
>>That's fine, but unschooling will still work .<<Yes! Yes! I can vouch for this (as can many I'm sure)! Unschooling kept all
four of my children whole and shining as who they are. I hope nobody reading
this thread or any of the posts here would think because their child may
have some extra kind of attention/physical/emotional needs, that they
couldn't unschool! It is SOOOO the opposite! Unschooling rocks for all!
Thanks,
Jacki
Barbara Chase
>> A diagnosis or label does not become an excuseI have an example... but I'm wondering if it's an example of the label or
>
>>>Sometimes it does become an excuse.<<
>
>Do you have an example of this Sandra? My circles tend not to use their
>children's challenges as an excuse, and I'm having a hard time imagining
>this.
the schooling. I've known three teenagers who are dyslexic, and each of
them do use this label as a reason why they *can't* do things, like learn
or read or even to be motivated to do something really fun which is a bit
challenging.
Now I happen to be dyslexic too, but I didn't know anything about it until
I was in my mid 20s. When I struggled to read, instead of leaning on an
excuse I found ways to do the school assignments without reading. I became
creative and inventive and worked around the system, while still being
stuck in it. I didn't know that I couldn't... I also didn't know that I
*could* read well until my mid 30s, which is when the school's method
finally left me. But that's definitely a schooling issue...
So I guess it depends on how much school history a person still has
influencing them. Even though we are all unschoolers, some of us still
have the school thinking coming through more strongly... In other words,
if the unschooling parent is still struggling w/ some of the school
thinking then a label like dyslexia might be hard for them to ignore. They
might be inclined to "help" their child w/ intervention and programs for
dyslexics so that their child won't be at a disadvantage (all of which are
probably designed for the sole purpose of having the schooled child stay on
track w/ all of the other schooled children.) Someone who is farther on
the unschooling path, who has been able to shed more of those school
thoughts wouldn't be as phased by the label. For them, it probably won't
become an excuse. It probably won't even come up at all, unless they want
to get the relatives off their backs.
Barbara
Mahalo - May you be in Divine Breath
Gold Standard
Thanks Barbara!
Jacki
-----Original Message-----
From: [email protected]
[mailto:[email protected]]On Behalf Of Barbara Chase
Sent: Sunday, January 08, 2006 11:14 PM
To: [email protected]
Subject: RE: [AlwaysLearning] Labels
the schooling. I've known three teenagers who are dyslexic, and each of
them do use this label as a reason why they *can't* do things, like learn
or read or even to be motivated to do something really fun which is a bit
challenging.
Now I happen to be dyslexic too, but I didn't know anything about it until
I was in my mid 20s. When I struggled to read, instead of leaning on an
excuse I found ways to do the school assignments without reading. I became
creative and inventive and worked around the system, while still being
stuck in it. I didn't know that I couldn't... I also didn't know that I
*could* read well until my mid 30s, which is when the school's method
finally left me. But that's definitely a schooling issue...
So I guess it depends on how much school history a person still has
influencing them. Even though we are all unschoolers, some of us still
have the school thinking coming through more strongly... In other words,
if the unschooling parent is still struggling w/ some of the school
thinking then a label like dyslexia might be hard for them to ignore. They
might be inclined to "help" their child w/ intervention and programs for
dyslexics so that their child won't be at a disadvantage (all of which are
probably designed for the sole purpose of having the schooled child stay on
track w/ all of the other schooled children.) Someone who is farther on
the unschooling path, who has been able to shed more of those school
thoughts wouldn't be as phased by the label. For them, it probably won't
become an excuse. It probably won't even come up at all, unless they want
to get the relatives off their backs.
Barbara
Mahalo - May you be in Divine Breath
Yahoo! Groups Links
Jacki
-----Original Message-----
From: [email protected]
[mailto:[email protected]]On Behalf Of Barbara Chase
Sent: Sunday, January 08, 2006 11:14 PM
To: [email protected]
Subject: RE: [AlwaysLearning] Labels
>> A diagnosis or label does not become an excuseI have an example... but I'm wondering if it's an example of the label or
>
>>>Sometimes it does become an excuse.<<
>
>Do you have an example of this Sandra? My circles tend not to use their
>children's challenges as an excuse, and I'm having a hard time imagining
>this.
the schooling. I've known three teenagers who are dyslexic, and each of
them do use this label as a reason why they *can't* do things, like learn
or read or even to be motivated to do something really fun which is a bit
challenging.
Now I happen to be dyslexic too, but I didn't know anything about it until
I was in my mid 20s. When I struggled to read, instead of leaning on an
excuse I found ways to do the school assignments without reading. I became
creative and inventive and worked around the system, while still being
stuck in it. I didn't know that I couldn't... I also didn't know that I
*could* read well until my mid 30s, which is when the school's method
finally left me. But that's definitely a schooling issue...
So I guess it depends on how much school history a person still has
influencing them. Even though we are all unschoolers, some of us still
have the school thinking coming through more strongly... In other words,
if the unschooling parent is still struggling w/ some of the school
thinking then a label like dyslexia might be hard for them to ignore. They
might be inclined to "help" their child w/ intervention and programs for
dyslexics so that their child won't be at a disadvantage (all of which are
probably designed for the sole purpose of having the schooled child stay on
track w/ all of the other schooled children.) Someone who is farther on
the unschooling path, who has been able to shed more of those school
thoughts wouldn't be as phased by the label. For them, it probably won't
become an excuse. It probably won't even come up at all, unless they want
to get the relatives off their backs.
Barbara
Mahalo - May you be in Divine Breath
Yahoo! Groups Links
Gold Standard
>>I've known three teenagers who are dyslexic, and each ofI think this is a really great example of "self-fulfilling prophecy". And at
>>them do use this label as a reason why they *can't* do things,<<
the same time it is hard to isolate it away from schooling too, as you
mentioned.
I wonder in your example of your own life Barbara, if you had known about
dyslexia before your twenties if that would have been helpful or not while
you tried to navigate through a system that required you to read potentially
before you ready to.
There are studies, none of which I have my hands on currently, that dyslexia
can actually be caused from forcing the brain to read before it is ready.
School is REALLY good at that!
My oldest son every now and then will say, "It's because I'm autistic"...but
it is usually an informational statement for whoever he is talking to (I
heard him answer someone who asked, "Dude...why do you mumble so much?") not
so much why he CAN'T do something. But why he is the way he is in this
current moment. He works pretty hard to get better at things that are
challenges to him.
If he was in school and was told he was autistic, it may have had a very
different effect on him, and may have given some of that "self-fulfilling
prophecy". Eww.
I thought Sandra's statement about using labels as an excuse was more geared
toward parents using the label as an excuse why their kids couldn't do
something. That's what confused me.
Thanks!
Jacki
Pamela Sorooshian
I've told before about the girl who was playing in the swimming pool
with two of my girls and her two sisters -- she was doing annoying
things, messing up the game they were trying to play by splashing
really big, etc. (She wasn't the youngest of the kids, by the way,
she was 9 and the kids ranged in age from 6 to 11.)
So - they were being pretty patient with her - her own sisters were
firmly saying things like "Lacey please stop doing that." One of my
daughters pulled out a pool toy and said, "Lacy if you take it a
little ways away, you can play with this." Anyway - they were making
an effort to make it clear to her they wanted her to stop and they
offered her an alternative - they'd already tried to include her in
several ways.
Well - finally their voices were starting get a little impatient
sounding - they're all VERY sweet girls - they were truly not being
mean or harsh with her -- but I heard her say to them, "You KNOW I'm
special needs and you have to be nice and let me do what I want."
There is a long story behind this child's problems - she'd had
leukemia at 6 years old. Before that she was in school and reading
really well and clearly very bright. All five of her siblings were
school successes, if you know what I mean. But she'd had massive
amounts of chemotherapy AND she'd developed a secondary bone disease
that had been treated with additional very strong meds -- and they'd
had an impact on her learning ability. After a year and a half out of
school, she went back and had lots of trouble and was diagnosed with
all kinds of learning disabilities.
Anyway - yes, I heard her MANY times use "I am special needs" as an
excuse for being rude and demanding and so on. I don't know how that
was being nurtured in her family, but it clearly was happening.
That is just one example - but it was very extreme and specific.
-pam
with two of my girls and her two sisters -- she was doing annoying
things, messing up the game they were trying to play by splashing
really big, etc. (She wasn't the youngest of the kids, by the way,
she was 9 and the kids ranged in age from 6 to 11.)
So - they were being pretty patient with her - her own sisters were
firmly saying things like "Lacey please stop doing that." One of my
daughters pulled out a pool toy and said, "Lacy if you take it a
little ways away, you can play with this." Anyway - they were making
an effort to make it clear to her they wanted her to stop and they
offered her an alternative - they'd already tried to include her in
several ways.
Well - finally their voices were starting get a little impatient
sounding - they're all VERY sweet girls - they were truly not being
mean or harsh with her -- but I heard her say to them, "You KNOW I'm
special needs and you have to be nice and let me do what I want."
There is a long story behind this child's problems - she'd had
leukemia at 6 years old. Before that she was in school and reading
really well and clearly very bright. All five of her siblings were
school successes, if you know what I mean. But she'd had massive
amounts of chemotherapy AND she'd developed a secondary bone disease
that had been treated with additional very strong meds -- and they'd
had an impact on her learning ability. After a year and a half out of
school, she went back and had lots of trouble and was diagnosed with
all kinds of learning disabilities.
Anyway - yes, I heard her MANY times use "I am special needs" as an
excuse for being rude and demanding and so on. I don't know how that
was being nurtured in her family, but it clearly was happening.
That is just one example - but it was very extreme and specific.
-pam
On Jan 8, 2006, at 9:45 PM, Gold Standard wrote:
>> A diagnosis or label does not become
>> an excuse
>
>>> Sometimes it does become an excuse.<<
>
> Do you have an example of this Sandra? My circles tend not to use
> their
> children's challenges as an excuse, and I'm having a hard time
> imagining
> this.
[Non-text portions of this message have been removed]
Gold Standard
Great example Pam! Thanks!
things up for that family.
When my oldest had his third open-heart surgery a year and a half ago at 15,
a procedure that went bad...lost him on the table for a bit...loss of oxygen
because of it...took 9 hours to complete what was supposed to take 4...it
took over a year (well, it's only been a year and a half since it happened,
so maybe we're still in recovery) for our guy to seem healthy again, and be
more himself. He was very confused often about the changes in his body and
mind from that surgery...he had pretty awful long-term side effects. He was
also deeply depressed for a while.
As a parent in this situation, I can tell you that there is no clear line
between when you say, "It seems to be one of the effects of the procedure"
which I would say when he was feeling so badly about not being able to do
something and it was most likely because of the procedure, and when you say,
"Suck it up. Move on." (a term my whole extended family uses and I
personally hate). I understand it is our job to keep it real with our kids
as they learn about how to function in the world, but when you are thrown
these unexpected sharp curve balls, the standard navigation in parenting
changes dramatically. Much less charted waters to draw from.
That time was the most intensely painful experience any of my family's
lives. The healing comes slowly over time, and knowing exactly how to handle
all the changes in our lives because of it was very difficult. Who knows
when a parent should stop talking about "special needs" because of
chemotherapy? I sure don't. And I can see how easy it would be to be
confused about that. It seems like at that moment in time, that girl was
using a label in a negative way. Hopefully, someone helped to balance it out
for her.
It sounds like your daughter and friends handled this girl really well...she
probably would have gotten far less patience with most people. These outside
experiences will be some of the ways she learns about her behavior, I bet.
My son continues to learn from these outside experiences as well.
Though I am happy to say that he is just thriving now, and doesn't even look
back to the hard times!
Thanks,
Jacki
>>There is a long story behind this child's problems - she'd hadThis is SUCH an incredibly sad story. I can't even imagine how that mixed
>>leukemia at 6 years old. <snip> But she'd had massive
>>amounts of chemotherapy AND she'd developed a secondary bone disease
>>that had been treated with additional very strong meds -- and they'd
>>had an impact on her learning ability.<<
things up for that family.
When my oldest had his third open-heart surgery a year and a half ago at 15,
a procedure that went bad...lost him on the table for a bit...loss of oxygen
because of it...took 9 hours to complete what was supposed to take 4...it
took over a year (well, it's only been a year and a half since it happened,
so maybe we're still in recovery) for our guy to seem healthy again, and be
more himself. He was very confused often about the changes in his body and
mind from that surgery...he had pretty awful long-term side effects. He was
also deeply depressed for a while.
As a parent in this situation, I can tell you that there is no clear line
between when you say, "It seems to be one of the effects of the procedure"
which I would say when he was feeling so badly about not being able to do
something and it was most likely because of the procedure, and when you say,
"Suck it up. Move on." (a term my whole extended family uses and I
personally hate). I understand it is our job to keep it real with our kids
as they learn about how to function in the world, but when you are thrown
these unexpected sharp curve balls, the standard navigation in parenting
changes dramatically. Much less charted waters to draw from.
That time was the most intensely painful experience any of my family's
lives. The healing comes slowly over time, and knowing exactly how to handle
all the changes in our lives because of it was very difficult. Who knows
when a parent should stop talking about "special needs" because of
chemotherapy? I sure don't. And I can see how easy it would be to be
confused about that. It seems like at that moment in time, that girl was
using a label in a negative way. Hopefully, someone helped to balance it out
for her.
It sounds like your daughter and friends handled this girl really well...she
probably would have gotten far less patience with most people. These outside
experiences will be some of the ways she learns about her behavior, I bet.
My son continues to learn from these outside experiences as well.
Though I am happy to say that he is just thriving now, and doesn't even look
back to the hard times!
Thanks,
Jacki
Barbara Chase
>I wonder in your example of your own life Barbara, if you had known aboutNo, not helpful. I was thinking about his, and came up w/ a very strange
>dyslexia before your twenties if that would have been helpful or not while
>you tried to navigate through a system that required you to read potentially
>before you ready to.
analogy (if that's the right word...)
Imagine a horse being raised in a two legged society, and everyone is
trying to figure out how to help the poor horse stand on two feet. They
come up with all sorts of strategies to make it easier, devices to help
support the back legs (because, after all, the horse was born w/ this
disability.) And, most of the time the horse can stand on two feet... they
get by. That's how I view the labels and the treatments, especially for
dyslexia.
Yes, the intervention helps the poor horse stand on two feet. Yes, the
intervention helps the poor child read they way they are "supposed" to.
But that's not what I would have wanted in my life.... I wanted to run!
The best for me would have been no school at all... but the next best for
me was being able to find my own path, being able to figure out how to work
around the system, being able to figure out that I was a horse and that
running on four legs was what felt the best for me. A label and all of the
intervention that goes along with that would have probably stifled me for
life.
>There are studies, none of which I have my hands on currently, that dyslexiaI haven't read the studies, probably never will. But I don't buy into this
>can actually be caused from forcing the brain to read before it is ready.
conclusion. What feels more right in my own experience is that I have
always been "different" in the way I process visual information. Being
pushed to read early (and being forced to use a reading method which didn't
suite me at all) just made the difference more noticeable compared to other
kids. That's why I think that labels based on comparisons with others just
get in the way of noticing and being who we are, or noticing and connection
with who our kids are, allowing each of us to uniquely flourish.
Barbara
Mahalo - May you be in Divine Breath
Ren Allen
"I haven't read the studies, probably never will. But I don't buy into
this conclusion. What feels more right in my own experience is that I
have always been "different" in the way I process visual information.
Being pushed to read early (and being forced to use a reading method
which didn't suite me at all) just made the difference more noticeable
compared to other kids."
Yes, but I think there are people that DO display dyslexic tendencies
that don't have a genetic difference like yourself.
I think school and all their methods "see" dyslexia when no difference
really exists...it causes symptoms because of the methods, not a
difference in visual processing for the learner.
Does that make sense?
I'm sure there ARE people with a genetic "difference" in the
processing...but there are also a lot of symptoms being caused by
their lame methods, where no real difference existed at all. The child
just needed more time and freedom.
Ren
learninginfreedom.com
this conclusion. What feels more right in my own experience is that I
have always been "different" in the way I process visual information.
Being pushed to read early (and being forced to use a reading method
which didn't suite me at all) just made the difference more noticeable
compared to other kids."
Yes, but I think there are people that DO display dyslexic tendencies
that don't have a genetic difference like yourself.
I think school and all their methods "see" dyslexia when no difference
really exists...it causes symptoms because of the methods, not a
difference in visual processing for the learner.
Does that make sense?
I'm sure there ARE people with a genetic "difference" in the
processing...but there are also a lot of symptoms being caused by
their lame methods, where no real difference existed at all. The child
just needed more time and freedom.
Ren
learninginfreedom.com
Barbara Chase
>Yes, but I think there are people that DO display dyslexic tendenciesYes, that does make sense and just reinforces my own thought that using
>that don't have a genetic difference like yourself.
>I think school and all their methods "see" dyslexia when no difference
>really exists...it causes symptoms because of the methods, not a
>difference in visual processing for the learner.
>Does that make sense?
>
>I'm sure there ARE people with a genetic "difference" in the
>processing...but there are also a lot of symptoms being caused by
>their lame methods, where no real difference existed at all. The child
>just needed more time and freedom.
labels because of comparisons to what others can do - whether genetically
different or not - just gets in the way of real learning. We really are
all different, and imho the more I support and nurture those differences
the more fun I have.
Barbara
Mahalo - May you be in Divine Breath
Gold Standard
>>The best for me would have been no school at all...<<Here here!!
I loved your horse analogy Barbara...made a real clear picture for me.
Thanks,
Jacki
Sandra Dodd
On Jan 8, 2006, at 10:45 PM, Gold Standard wrote:
There was an example on this list, and I don't remember whose story
it was. I don't need to know who it was, so for those of you who
know exactly who it was, I would very much prefer for you not to say
"it was me" or "her." It shouldn't matter who it was.
Someone said something like that she was proud of her son because he
went to his [boss? leader-of-something?] and said that he was
thus'n'such a way, and that meant he would be blunt and say what he
thought and just tell the truth.*
I know that's short and I know that's a paraphrase.
If a person knows enough to know that sometimes he says too much or
says it impolitely or inappropriately, then saying "I'm going to do
this because I can't help it," and expecting the other person to just
live with tactlessness is using a condition/disability/syndrome as an
excuse. It was saying "I must be excused for doing things that
others would not do, or for what in others would be considered
purposeful insubordination" (or whatever--still in the paraphrase and
example-mode).
If I were a one-eyed driver and said "Because I don't have binocular
vision and I'm not good at spatial reasoning, I will damage your
truck and other vehicles more than your other employees do," that
would be quite an unreasonable excuse. Not everyone gets to drive.
If a gambler told the landlord "I will probably be behind on the
rent, because I have a serious gambling problem, that would not be a
good excuse. Landlords make contracts with rentors
It seems sometimes in discussions of children's special abilities or
special needs, the parents confuse finding them opportunities to play
and participate as children with some sort of lifelong license to
participate "equally" forever. And is seems sometimes that people
confuse a school's requirement to provide services to every child in
the school district with some imagined requirement of every neighbor
and stranger to treat their child the same as that person would treat
any other child.
Some adults just won't like my children because they're quick to
respond, they aren't as likely as some to say "Sir" or "Ma'am," they
might sing rude songs, they wear smart-aleck t-shirts sometimes
(often about homeschooling). Lots of people like them. Some people
don't. Some people would very likely prefer for them to stay away
from their school-invested children who have to do homework and go to
bed early or they might be grounded (etc....)
I can't dictate to other people how to respond to my children or how
to treat my children. If they were in public school, I could agitate
for them to get special attention, but in the real world there's
rarely anything resembling a special education department. Maybe
occupational therapists or social workers qualify in that way.
And on a tangent from the star *, the idea that someone can just say
"I will tell the truth" can be an excuse. Someone who's not good at
knowing what's good to say when and to whom might want to consider
that his perceptions might not be "the truth" every time. "It seems
to me" or "I feel that..." is generally a better way to preface a
statement than "I will tell you the truth." "I was just telling the
truth" doesn't cover over a difference of opinion or a need to
understand that the other person in the situation might have a
different perception and that his perception might be more objective,
or more important. It happens.
Sandra
> >>Sometimes it does become an excuse.<<============================================================
>
> Do you have an example of this Sandra? My circles tend not to use
> their
> children's challenges as an excuse, and I'm having a hard time
> imagining
> this.
There was an example on this list, and I don't remember whose story
it was. I don't need to know who it was, so for those of you who
know exactly who it was, I would very much prefer for you not to say
"it was me" or "her." It shouldn't matter who it was.
Someone said something like that she was proud of her son because he
went to his [boss? leader-of-something?] and said that he was
thus'n'such a way, and that meant he would be blunt and say what he
thought and just tell the truth.*
I know that's short and I know that's a paraphrase.
If a person knows enough to know that sometimes he says too much or
says it impolitely or inappropriately, then saying "I'm going to do
this because I can't help it," and expecting the other person to just
live with tactlessness is using a condition/disability/syndrome as an
excuse. It was saying "I must be excused for doing things that
others would not do, or for what in others would be considered
purposeful insubordination" (or whatever--still in the paraphrase and
example-mode).
If I were a one-eyed driver and said "Because I don't have binocular
vision and I'm not good at spatial reasoning, I will damage your
truck and other vehicles more than your other employees do," that
would be quite an unreasonable excuse. Not everyone gets to drive.
If a gambler told the landlord "I will probably be behind on the
rent, because I have a serious gambling problem, that would not be a
good excuse. Landlords make contracts with rentors
It seems sometimes in discussions of children's special abilities or
special needs, the parents confuse finding them opportunities to play
and participate as children with some sort of lifelong license to
participate "equally" forever. And is seems sometimes that people
confuse a school's requirement to provide services to every child in
the school district with some imagined requirement of every neighbor
and stranger to treat their child the same as that person would treat
any other child.
Some adults just won't like my children because they're quick to
respond, they aren't as likely as some to say "Sir" or "Ma'am," they
might sing rude songs, they wear smart-aleck t-shirts sometimes
(often about homeschooling). Lots of people like them. Some people
don't. Some people would very likely prefer for them to stay away
from their school-invested children who have to do homework and go to
bed early or they might be grounded (etc....)
I can't dictate to other people how to respond to my children or how
to treat my children. If they were in public school, I could agitate
for them to get special attention, but in the real world there's
rarely anything resembling a special education department. Maybe
occupational therapists or social workers qualify in that way.
And on a tangent from the star *, the idea that someone can just say
"I will tell the truth" can be an excuse. Someone who's not good at
knowing what's good to say when and to whom might want to consider
that his perceptions might not be "the truth" every time. "It seems
to me" or "I feel that..." is generally a better way to preface a
statement than "I will tell you the truth." "I was just telling the
truth" doesn't cover over a difference of opinion or a need to
understand that the other person in the situation might have a
different perception and that his perception might be more objective,
or more important. It happens.
Sandra
Sandra Dodd
On Jan 8, 2006, at 11:47 PM, Gold Standard wrote:
This isn't applicable to unschooling.
-=-My oldest son every now and then will say, "It's because I'm
autistic"...but
it is usually an informational statement for whoever he is talking to (I
heard him answer someone who asked, "Dude...why do you mumble so
much?") not
so much why he CAN'T do something. But why he is the way he is in this
current moment. He works pretty hard to get better at things that are
challenges to him.-=-
Do those questions cause him to try not to mumble so much?
Is that a thing that's a challenge for him?
If not, it seems he's using a condition as an excuse.
-=-I thought Sandra's statement about using labels as an excuse was
more geared
toward parents using the label as an excuse why their kids couldn't do
something. That's what confused me.-=-
Parents using excuses are modelling using excuses.
Sandra
> -=-I wonder in your example of your own life Barbara, if you had================
> known about
> dyslexia before your twenties if that would have been helpful or
> not while
> you tried to navigate through a system that required you to read
> potentially
> before you ready to.-=-
This isn't applicable to unschooling.
-=-My oldest son every now and then will say, "It's because I'm
autistic"...but
it is usually an informational statement for whoever he is talking to (I
heard him answer someone who asked, "Dude...why do you mumble so
much?") not
so much why he CAN'T do something. But why he is the way he is in this
current moment. He works pretty hard to get better at things that are
challenges to him.-=-
Do those questions cause him to try not to mumble so much?
Is that a thing that's a challenge for him?
If not, it seems he's using a condition as an excuse.
-=-I thought Sandra's statement about using labels as an excuse was
more geared
toward parents using the label as an excuse why their kids couldn't do
something. That's what confused me.-=-
Parents using excuses are modelling using excuses.
Sandra
Sandra Dodd
On Jan 9, 2006, at 10:45 AM, Gold Standard wrote:
I thought they were pretty sweet in that situation too, but is that
good? If people made allowances for her and didn't say "You can
still be nice," did they just help reinforce her idea that she didn't
need to even TRY to be courteous and give other kids space and
opportunities?
-=-Who knows when a parent should stop talking about "special needs"
because of
chemotherapy?-=-
The parent should help keep the child out of situations he can't
handle. Maybe his MOST special need would be to have his mom nearby
until... until he didn't need her anymore. <g> Same with any
child. The parent of any child should keep him out of situations he
can't handle, and be nearby aytime he might need her nearby. School
doesn't allow for that. Unschooling does.
Sandra
> It sounds like your daughter and friends handled this girl really========================
> well...she
> probably would have gotten far less patience with most people.
I thought they were pretty sweet in that situation too, but is that
good? If people made allowances for her and didn't say "You can
still be nice," did they just help reinforce her idea that she didn't
need to even TRY to be courteous and give other kids space and
opportunities?
-=-Who knows when a parent should stop talking about "special needs"
because of
chemotherapy?-=-
The parent should help keep the child out of situations he can't
handle. Maybe his MOST special need would be to have his mom nearby
until... until he didn't need her anymore. <g> Same with any
child. The parent of any child should keep him out of situations he
can't handle, and be nearby aytime he might need her nearby. School
doesn't allow for that. Unschooling does.
Sandra
Nanci Kuykendall
>> A diagnosis or label does not become an excuse-=----------------
>Sometimes it does become an excuse.be careful >to qualify your statements. You can't
>So when you talk about things in broad terms, please
speak for everyone or >every situation.
Sorry, I wasn't meaning to. I as speaking from my own
experience with my own family and others I've known,
not meaning to make a statement about everyone,
everywhere. It didn't even occur to me that it would
be read that way. I could have said "A label doesn't
need (or have) to become an excuse." But I think that
for myself there was never any question of using a
label in that way, so I just thought about it, and so
said it, differently.
-=-It's VERY common for extended families
or other peripheral people in your life to have a
complete turnaround in their attitude and behavior
towards (for instance) your high functioning autistic
child when they understand that this is real, no they
are not just "a brat" and you are not a bad parent or
crazy or something.-=-
>That's fine, but unschooling will still work .Of course! I certainly didn't mean to imply that it
wouldn't. I was just sharing ways in which a label
can be used positively. The label Unschooler connects
people on this list, defines them partially in some
ways. Labels are not big evil boogiemen if they are
not allowed to get bigger or more important than they
should be. Labels can be very important tools, even
though they are defined (in the case of
medical/developmental labels) by someone else and are
imperfect ways to communicate an idea. Words and
language are imperfect too for that matter, and maybe
direct brain to brain wordless sharing complete with
point of view and emotion and so forth would be the
only way to truly, really communicate fully. Vulcan
Mind Melds? But we have the tools that we have, and I
try to use them to their potential.
>Few families of ANY unschooled kid will go longwithout >thinking or saying that the parents are crazy
or bad or the kid >is a brat. That will pass, but it
happens to most unschooled >kids and parents.
Yes, I've seen this. But with kids like mine, the
differences in behavior can be strong enough that even
other unschooling families are really weirded out and
judgemental about it unless they have a better
understanding of what they are dealing with. Having
that sort of social background information that allows
you to know where the behaviors of another person are
coming from is really helpful, for them and for us.
It doesn't matter whether the behavior is a cultural
difference, a developmental difference or something
else. There are not a lot of people in this world who
are flexible enough to just roll with radically
different stuff than they are used to without some
help assimilating and understanding it.
>I think looking for differences is less helpful on alist like >this than looking at similarities.
>SandraFortunately I wasn't looking for differences but was
just sharing information on a topic (Unschooling kids
who are "atypical") that people were responding to
with interest. Were I to refuse to acknowledge
however that my family do es have some challenges and
differences from *most* people I would not be doing
anyone any favors, least of all us. It's not unusual
for kids with undiagnosed "differences" to be horribly
depressed and have a much harder time dealing with the
world, both because they don't understand why things
that come to others are so much harder for them and by
not being able to benefit from a whole world of
experienced folks who went before and can offer tools,
advice and assistance. There are extremes to
everything of course and climbing into a label like a
new suit of skin isn't helpful either.
Would reinventing the wheel with unschooling all over
again in each and every family, rediscovering what
works, redefining what it is, standing alone against
the world feeling like the only unschooler on the
planet, and struggling with the bits that many others
before you had already solved and could offer great
assistance to you with, be better than gleaning from
the experience and knowledge of others on lists,
forums and in books? People are all different and I
think that acknowledging and learning from those
differences is beneficial, at least as beneficial as
learning from our similarlities. Not every child's
unschooling journey looks the same and those
differences add up to a lot of valuable information
for others, a goldmine of resources to draw from in my
opinion. Different ways that different people
discover the same truths. Just because my child's (or
my) behavior may or may not be something-or-other
that's typical of X-Y-Z label, doesn't mean that
another parent couldn't learn something valuable for
their own unschooling journey from it.
I guess I don't understand why someone (can't remember
who, sorry!) pointing out in a previous post that
their husband had a problem that he was relieved to
find was associated with his functional developmental
differences (autism/aspergers I believe) made people
close up, shut off the potential for assosciating
themselves or connecting themselves with that
behavior. They said something like "Oh I really
realted to that, until that word was said..." Why was
that so scary and alien? Why couldn't the other list
members still feel that connection to another human
who has a similar problem to themselves, but perhaps
for a different reason, and maybe to a different level
or degree?
Autism is often described as being mostly normal type
behaviors, but *more than* normal, more extreme, more
intense, etc. Most of the behaviors could be found in
regular folks without autism, but not to the same
degree or extent. That's the main defining
characteristic. I'm just curious, and learning from
this exploration of the emotions and ideas wrapped up
in these apparently powerful words. I'm not judging
anyone, in case it came out that way.
Nanci K.
Sandra Dodd
On Jan 10, 2006, at 8:18 PM, Nanci Kuykendall wrote:
-=- Labels are not big evil boogiemen if they are
not allowed to get bigger or more important than they
should be.-=-
"Should" isn't very powerful once the label's out there.
Things like test scores rarely go away, no matter how much parents
swear the score won't matter, and labels are much like test scores in
that way.
A child labelled against his will doesn't have a choice, and whether
that label is a boogieman or not is not up to the parents.
If a parent doesn't know she might've had an option not to use (seek/
want) a label, then she might feel she has no option but to get that
label and base life around it from then on. But once the label is
there, there's no option to have lived without it.
If someone tries unschooling without sending a child to kindergarten,
he might avoid all the unschooling it will take to recover.
If someone tries unschooling without labelling kids, he might avoid
all the (probably impossible) recovery from having been officially
declared faulty/problematical/difficult/whatever.
If someone tries unschooling and it doesn't work, school is still an
option.
If someone tries unschooling without labels and it doesn't work,
labelling is still an option.
Sandra
> The label Unschooler connectsNo one labelled me an unschooler against my will.
> people on this list, defines them partially in some
> ways.
-=- Labels are not big evil boogiemen if they are
not allowed to get bigger or more important than they
should be.-=-
"Should" isn't very powerful once the label's out there.
Things like test scores rarely go away, no matter how much parents
swear the score won't matter, and labels are much like test scores in
that way.
A child labelled against his will doesn't have a choice, and whether
that label is a boogieman or not is not up to the parents.
If a parent doesn't know she might've had an option not to use (seek/
want) a label, then she might feel she has no option but to get that
label and base life around it from then on. But once the label is
there, there's no option to have lived without it.
If someone tries unschooling without sending a child to kindergarten,
he might avoid all the unschooling it will take to recover.
If someone tries unschooling without labelling kids, he might avoid
all the (probably impossible) recovery from having been officially
declared faulty/problematical/difficult/whatever.
If someone tries unschooling and it doesn't work, school is still an
option.
If someone tries unschooling without labels and it doesn't work,
labelling is still an option.
Sandra
Nanci Kuykendall
>Great example Pam! Thanks!No Kidding, what a tragedy. Of course labels can be
misused and abused, like anything. What's a label
anyway? When does it go from being a piece of
potentially helpful information to a hurtful word?
Obviously the word "label" causes a visceral emotional
reaction for some people.
This thread just keeps getting better. I have been
soaking up all the stories from folks who were
"labeled children." Very interesting stuff. I've
often said that I am thankful that my kids have been
unschooled since birth and have escaped all those
school labels and aggressive interventions. Thomas in
particular would have a ton of them. They don't get
dragged around to many professionals to "figure out
what's wrong with them" nor do they get discussed in
terms of "this is my (label) child." I mainly handle
therapies myself when they are struggling with things
and need help.
Neither of them have ever said anything to the effect
of "You have to be nice to me because I'm special" or
acted that way, nor do they think of themselves as
essentially different from other people that I can
tell at all. In fact when they have a hard time (for
instance) with having appropriate behavior I let them
know that "If something like this is hard for you
(doesn't matter why), that just means you have to work
harder to accomplish it, that doesn't excuse you from
doing it." An example would be, not running and
screaming in a restaurant or store or climbing on the
shelving, etc. They were doing this today (the
running, screaming, and climbing on the shelves) in a
store and after asking them to stop multiple times in
a 10 minute period I had to ask them to wait for me
outside because I was trying to get in line and leave
the store. Just a reminder, they are 9 and almost 8.
Fortunately they could actually go outside where there
was a large pavement area and an empty bike rack thing
(big steel upside down U's coming out of the concrete)
to mess with and climb on and where I could see them
from the big glass doors of the store and was very
nearby. It was a small store. They asked to go with
me and they had their own money to get things and we
were not there that long, so it's not like I was
dragging them around on my boring errands or
something. So we had to talk in the car about trying
harder to have appropriate behaviors, what ways I
could help them, how they could help me, and what was
and was not ok to do in a store, and then we tried
again at the little local toy shop they asked me to
take them to after that, to spend their nickels and
dimes.
My boys certainly don't show any signs of depression
or image or self esteem problems. They just joyfully
*ARE* and part of who they are happens to include
something that professional people like to call
autism, and which happens to affect multiple
generations of their family to some degree. There's
nothing evil about it, any more than having redheads
in the family or being tall is evil. It just is.
Sometimes it helps a lot though to know it, and to be
able to examine how it affects how we see and hear and
feel and react to things. Helps a lot in fact. It
does for me. It helps me to know myself better, and
to not have as much anxiety about where my feelings
are coming from, and to be a better mom and spouse and
friend and to understand those weird "neurologically
typical" folks better.
Nanci K.
Gold Standard
-----Original Message-----
enough to say he is sometimes impolite or inappropriate does not necessarily
AT ALL know right then how to make it NOT so. It shows that they at least
have that figured out. There is an assumption in the paragraph above that
this person was saying like, "nah nah nah nah nah, I'm this way and you have
to suffer for it." That may be how an observer perceived the situation. It
COULD be that the person was explaining a behavior that they are working on,
like I see my ds occasionally (very occasionally) do. When ds is in a
situation where he is having to explain that he can't help whatever he did,
or didn't mean whatever he did, he is usually mortified that he has gotten
in this position. Intense internal angst. He is trying to reach out to the
other person for some understanding. And he learns. And he moves forward
with another little piece that hopefully helps him next time.
My husband talks about knowing that people would get pissed at him, and him
being SO clueless as to what he did wrong. Utilizing this label "Asperger's"
allowed them to unlock some major puzzle pieces for himself. We lived
without the labels for most of dh's and ds's lives, and only used the label
for information initially. But being able to say, "I see your mad. Whatever
I did, I didn't mean to make you mad. What did I do?" followed by "I am
autistic and still learning certain social things. I'm sorry to have
offended you." has made a huge difference in dh's life. No excuses, just
explanations.
Now they can at least say "I am not an asshole. I am trying to learn this
stuff but it takes time. My heart is pure gold and if I do something to
offend you, please know it is not my intention" because at least for my two
guys here, I have never seen them intentionally offend another person, or
want to be impolite. But that doesn't mean because they don't want to, they
automatically know how not to.
Before the label, we had meetings with dh's co-workers to say, "Hey look,
he's going to probably be more blunt than you are used to, but his intention
is to give you this information, not to offend you. Let him know if you are
feeling offended. He won't see it on his own" along with telling them about
other seemingly "inappropriate" behaviors. They still got mad and assumed he
had complete control over it. *I* knew his struggle. He knew his struggle.
But others did not.
It has been so much more effective to say, "He is at the tail end of a long
life with autism. He's figured lots of things out socially, but every now
and then may say something that seems too blunt or offensive. Tell him when
that happens. He will probably immediately apologize and set it straight."
Which is what he does, and he ALWAYS feels bad when it happens. As does my
ds. They would NEVER arrogantly say, "I have autism. I am rude. Deal with
it." They are mortified when they've gotten themselves in situations like
that.
Dh does not for a second lean on this label. Most information out there
about it gives great help with reducing the typical difficult symptoms,
which is often the goal. He has cognitively worked on this for years, and
maybe I'm sheltered and naive about this, but I don't see our label
situation as being used as a crutch. That makes me think many others
probably aren't either.
Just to move for a second to the positive, lest it sound like we focus on
this challenging stuff all the time, my two guys are amazing! Their amazing
creative writings, incredible inventive ideas, humor like no others in my
life...those are the things we typically focus on. These little challenges
are just part of an ever-evolving package.
Ironically, at least in how this is presented in the theory above, having
the label helped dh LESSEN being inappropriate and impolite.
In the example I gave of my son in an earlier post, he said to his drama
teacher, ""Oh. You're probably wondering why I am so blunt about what I
think. You see, I am working on making that easier on people around me,..."
that last part was a very important part of the sentence. He IS working on
making that easier on people around him. He's not sitting around saying "I'm
autistic and you guys are just going to have to deal with it. He WANTS to be
acceptable and polite to people.
For Andrew, he sees with more clarity his impoliteness or inappropriateness
now than he ever did before he heard the word "autism". And he's figuring
out what he is doing wrong and changing it. He doesn't like people pissed at
him. Who does? And while he learns how to get better and better at being
more "appropriate" and "polite" it is dang useful to give people a heads-up
when you start to see that they are getting confused about your behavior.
Hell, I'm excited as a pig and poop that he even noticed that his drama
teacher was getting annoyed! That is a HUGE step for him...to notice WHEN
someone was getting irritated. And seeing that doesn't make his body then
become normal and act appropriate...it shows that SOMETHING he is doing is
bothering the other person...often not sure what...but to be able to
say..."okay, I know something is wrong here, don't know exactly what it is,
but I am autistic and that is at least part of the problem" IS helpful to
all involved. NOT an excuse. He WANTS to fix it. Can you imagine that
internal struggle? It is intense and filled with anxiety. It can be like
finding your way through an intricate gargantuan maze in the dark without a
flashlight.
the way society has created thus far, you should not go into society? That's
what this analogy says to me.
condition is not doing something intentionally wrong, or breaking a
contract. In our situation, they are still figuring out what the damn
contract says!
And if they are in the process of LEARNING how to cope and behave in
society, it makes sense that they let people know that. Let me tell you, my
husband would probably have given his right arm to not have gone through the
tortures of being an "inappropriate" person in this world. Your examples
only add to the lack of understanding and the intolerance of our society,
imho. Yes, we should all work toward treating each other well. AND yes some
people are way behind the curve in that area...(they are way ABOVE the curve
in other areas though...and my guess is that because they are so smart in
certain isolated areas [think Mozart, Einstein], their social development
suffers) but that is no excuse for US to not be understanding about it.
has little meaning to me. I've been talking about the real life things that
happen in my family. When you say something like this statement above, it is
clear to me that you are detached and distanced from the actual experience
of living with someone who is beyond the parameters of societal norms...NOT
public school norms...but society's norms. The kind of norms that keep
people able to work and live together well.
This is part of why a list that has lots of people with this kind of
situation in their homes IS helpful...not to give excuses for behavior or
promote "self-fulfilling prophecies", but to talk about our ACTUAL
experiences. Otherwise, it is often theory and assumptive and guesswork. And
can be SO non-understanding and, well, offensive, as I have found some of
this post to be.
That said, I do think it is important to maintain an "I can do anything"
attitude no matter what "condition" one might have. That is a given in my
house. Being confined by a label is not helpful. My friend has a son who is
paralyzed from the waist down. Born with Cerebral Palsy. At age 11 he still
attends weekly physical therapy to keep his limbs healthy, but also to
continue working on walking. His label and diagnosis only help them get his
needs met...the labels do not make him or his parents think he'll never
walk, though that is what they are told.
husband is one of them. To this day he often does not know when the truth
should or shouldn't be told. That is a skill that MOST of us have and SOME
of us don't. It is not something that is easy to learn if you don't have
that piece in your brain. Dh continues to try, but still gets very confused
about this...("Why wasn't I supposed to tell Sue that you didn't want to go
to her party? You said you didn't want to go." Or "Why is she mad at me?
Because I said she smelled? She DID smell! Doesn't she want to know that?")
Very confusing. Literal, truthful life...what could be wrong with that? A
lot can end up being wrong with that.
sentences...it is a structured learning thing. And the more that you want
people to not be mad at you, the more you want to learn this and other
lessons.
what they are thinking, or they answer a question. But it will be stated as
a statement, not as an opinion.
here...learning that the other person may think very differently. It takes a
kind of mental energy to go this distance (not for you or me, but definitely
for them). We see it, we do it. They WORK over time to understand this and
are at varying degrees of understanding it, and like many learned skills, it
can come and go. And in the meantime, it can be useful to say, "I'm autistic
and working on this."
Jacki
>>Someone said something like that she was proud of her son because heWell this makes sense in THEORY, but it isn't accurate. A person who knows
>>went to his [boss? leader-of-something?] and said that he was
>>thus'n'such a way, and that meant he would be blunt and say what he
>>thought and just tell the truth.*<<
>>If a person knows enough to know that sometimes he says too much or
>>says it impolitely or inappropriately, then saying "I'm going to do
>>this because I can't help it," and expecting the other person to just
>>live with tactlessness is using a condition/disability/syndrome as an
>>excuse.<<
enough to say he is sometimes impolite or inappropriate does not necessarily
AT ALL know right then how to make it NOT so. It shows that they at least
have that figured out. There is an assumption in the paragraph above that
this person was saying like, "nah nah nah nah nah, I'm this way and you have
to suffer for it." That may be how an observer perceived the situation. It
COULD be that the person was explaining a behavior that they are working on,
like I see my ds occasionally (very occasionally) do. When ds is in a
situation where he is having to explain that he can't help whatever he did,
or didn't mean whatever he did, he is usually mortified that he has gotten
in this position. Intense internal angst. He is trying to reach out to the
other person for some understanding. And he learns. And he moves forward
with another little piece that hopefully helps him next time.
My husband talks about knowing that people would get pissed at him, and him
being SO clueless as to what he did wrong. Utilizing this label "Asperger's"
allowed them to unlock some major puzzle pieces for himself. We lived
without the labels for most of dh's and ds's lives, and only used the label
for information initially. But being able to say, "I see your mad. Whatever
I did, I didn't mean to make you mad. What did I do?" followed by "I am
autistic and still learning certain social things. I'm sorry to have
offended you." has made a huge difference in dh's life. No excuses, just
explanations.
Now they can at least say "I am not an asshole. I am trying to learn this
stuff but it takes time. My heart is pure gold and if I do something to
offend you, please know it is not my intention" because at least for my two
guys here, I have never seen them intentionally offend another person, or
want to be impolite. But that doesn't mean because they don't want to, they
automatically know how not to.
Before the label, we had meetings with dh's co-workers to say, "Hey look,
he's going to probably be more blunt than you are used to, but his intention
is to give you this information, not to offend you. Let him know if you are
feeling offended. He won't see it on his own" along with telling them about
other seemingly "inappropriate" behaviors. They still got mad and assumed he
had complete control over it. *I* knew his struggle. He knew his struggle.
But others did not.
It has been so much more effective to say, "He is at the tail end of a long
life with autism. He's figured lots of things out socially, but every now
and then may say something that seems too blunt or offensive. Tell him when
that happens. He will probably immediately apologize and set it straight."
Which is what he does, and he ALWAYS feels bad when it happens. As does my
ds. They would NEVER arrogantly say, "I have autism. I am rude. Deal with
it." They are mortified when they've gotten themselves in situations like
that.
Dh does not for a second lean on this label. Most information out there
about it gives great help with reducing the typical difficult symptoms,
which is often the goal. He has cognitively worked on this for years, and
maybe I'm sheltered and naive about this, but I don't see our label
situation as being used as a crutch. That makes me think many others
probably aren't either.
Just to move for a second to the positive, lest it sound like we focus on
this challenging stuff all the time, my two guys are amazing! Their amazing
creative writings, incredible inventive ideas, humor like no others in my
life...those are the things we typically focus on. These little challenges
are just part of an ever-evolving package.
Ironically, at least in how this is presented in the theory above, having
the label helped dh LESSEN being inappropriate and impolite.
In the example I gave of my son in an earlier post, he said to his drama
teacher, ""Oh. You're probably wondering why I am so blunt about what I
think. You see, I am working on making that easier on people around me,..."
that last part was a very important part of the sentence. He IS working on
making that easier on people around him. He's not sitting around saying "I'm
autistic and you guys are just going to have to deal with it. He WANTS to be
acceptable and polite to people.
For Andrew, he sees with more clarity his impoliteness or inappropriateness
now than he ever did before he heard the word "autism". And he's figuring
out what he is doing wrong and changing it. He doesn't like people pissed at
him. Who does? And while he learns how to get better and better at being
more "appropriate" and "polite" it is dang useful to give people a heads-up
when you start to see that they are getting confused about your behavior.
Hell, I'm excited as a pig and poop that he even noticed that his drama
teacher was getting annoyed! That is a HUGE step for him...to notice WHEN
someone was getting irritated. And seeing that doesn't make his body then
become normal and act appropriate...it shows that SOMETHING he is doing is
bothering the other person...often not sure what...but to be able to
say..."okay, I know something is wrong here, don't know exactly what it is,
but I am autistic and that is at least part of the problem" IS helpful to
all involved. NOT an excuse. He WANTS to fix it. Can you imagine that
internal struggle? It is intense and filled with anxiety. It can be like
finding your way through an intricate gargantuan maze in the dark without a
flashlight.
>>If I were a one-eyed driver and said "Because I don't have binocularAre you saying if you don't know how to communicate "appropriately", as in
>>vision and I'm not good at spatial reasoning, I will damage your
>>truck and other vehicles more than your other employees do," that
>>would be quite an unreasonable excuse. Not everyone gets to drive.<<
the way society has created thus far, you should not go into society? That's
what this analogy says to me.
>>If a gambler told the landlord "I will probably be behind on theAgain, this is apples and oranges Sandra. A person with a neurological
>>rent, because I have a serious gambling problem, that would not be a
>>good excuse. Landlords make contracts with rentors<<
condition is not doing something intentionally wrong, or breaking a
contract. In our situation, they are still figuring out what the damn
contract says!
And if they are in the process of LEARNING how to cope and behave in
society, it makes sense that they let people know that. Let me tell you, my
husband would probably have given his right arm to not have gone through the
tortures of being an "inappropriate" person in this world. Your examples
only add to the lack of understanding and the intolerance of our society,
imho. Yes, we should all work toward treating each other well. AND yes some
people are way behind the curve in that area...(they are way ABOVE the curve
in other areas though...and my guess is that because they are so smart in
certain isolated areas [think Mozart, Einstein], their social development
suffers) but that is no excuse for US to not be understanding about it.
>>It seems sometimes in discussions of children's special abilities orWhen this happens, can you give an example? Talking in these generalities
>>special needs, the parents confuse finding them opportunities to play
>>and participate as children with some sort of lifelong license to
>>participate "equally" forever. And is seems sometimes that people
>>confuse a school's requirement to provide services to every child in
>>the school district with some imagined requirement of every neighbor
>>and stranger to treat their child the same as that person would treat
>>any other child.<<
has little meaning to me. I've been talking about the real life things that
happen in my family. When you say something like this statement above, it is
clear to me that you are detached and distanced from the actual experience
of living with someone who is beyond the parameters of societal norms...NOT
public school norms...but society's norms. The kind of norms that keep
people able to work and live together well.
This is part of why a list that has lots of people with this kind of
situation in their homes IS helpful...not to give excuses for behavior or
promote "self-fulfilling prophecies", but to talk about our ACTUAL
experiences. Otherwise, it is often theory and assumptive and guesswork. And
can be SO non-understanding and, well, offensive, as I have found some of
this post to be.
That said, I do think it is important to maintain an "I can do anything"
attitude no matter what "condition" one might have. That is a given in my
house. Being confined by a label is not helpful. My friend has a son who is
paralyzed from the waist down. Born with Cerebral Palsy. At age 11 he still
attends weekly physical therapy to keep his limbs healthy, but also to
continue working on walking. His label and diagnosis only help them get his
needs met...the labels do not make him or his parents think he'll never
walk, though that is what they are told.
>>in the real world there'sIn the real world there is the internet. YAY!!!!!!!!
>>rarely anything resembling a special education department. Maybe
>>occupational therapists or social workers qualify in that way.<<
>>And on a tangent from the star *, the idea that someone can just sayThere are people who can not help themselves but to tell the truth. My
>>"I will tell the truth" can be an excuse.<<
husband is one of them. To this day he often does not know when the truth
should or shouldn't be told. That is a skill that MOST of us have and SOME
of us don't. It is not something that is easy to learn if you don't have
that piece in your brain. Dh continues to try, but still gets very confused
about this...("Why wasn't I supposed to tell Sue that you didn't want to go
to her party? You said you didn't want to go." Or "Why is she mad at me?
Because I said she smelled? She DID smell! Doesn't she want to know that?")
Very confusing. Literal, truthful life...what could be wrong with that? A
lot can end up being wrong with that.
>>Someone who's not good atYes a good suggestion that we've figured out here. Softening the
>>knowing what's good to say when and to whom might want to consider
>>that his perceptions might not be "the truth" every time.<<
>>"It seems
>>to me" or "I feel that..." is generally a better way to preface a
>>statement<<
sentences...it is a structured learning thing. And the more that you want
people to not be mad at you, the more you want to learn this and other
lessons.
>>than "I will tell you the truth."<<Well for us, dh and ds don't start their sentences that way...they just say
what they are thinking, or they answer a question. But it will be stated as
a statement, not as an opinion.
>>"I was just telling theYes, this is one of the pieces of learning that I've seen happen
>>truth" doesn't cover over a difference of opinion or a need to
>>understand that the other person in the situation might have a
>>different perception and that his perception might be more objective,
>>or more important.<<
here...learning that the other person may think very differently. It takes a
kind of mental energy to go this distance (not for you or me, but definitely
for them). We see it, we do it. They WORK over time to understand this and
are at varying degrees of understanding it, and like many learned skills, it
can come and go. And in the meantime, it can be useful to say, "I'm autistic
and working on this."
Jacki
Gold Standard
-=-My oldest son every now and then will say, "It's because I'm
autistic"...but
it is usually an informational statement for whoever he is talking to (I
heard him answer someone who asked, "Dude...why do you mumble so
much?") not
so much why he CAN'T do something. But why he is the way he is in this
current moment. He works pretty hard to get better at things that are
challenges to him.-=-
on that one since he had an interest in people. And it is very much a
challenge for him. He has come SO far with this.
excuse. I don't see it very often in the circles I'm in.
Jacki
autistic"...but
it is usually an informational statement for whoever he is talking to (I
heard him answer someone who asked, "Dude...why do you mumble so
much?") not
so much why he CAN'T do something. But why he is the way he is in this
current moment. He works pretty hard to get better at things that are
challenges to him.-=-
>>Do those questions cause him to try not to mumble so much?These questions do indeed cause him to try not to mumble. He's been working
>>Is that a thing that's a challenge for him?<<
on that one since he had an interest in people. And it is very much a
challenge for him. He has come SO far with this.
>>Parents using excuses are modelling using excuses.<<Well...yeah. But I think the differentiation is whether a parent IS using an
excuse. I don't see it very often in the circles I'm in.
Jacki
Gold Standard
>>The parent of any child should keep him out of situations heAnother potentially tricky one. My guy is turning 17 in a couple of weeks.
>>can't handle, and be nearby aytime he might need her nearby.<<
Not wanting mama around so much. More learning from the world. And it is
fabulous and painful and scary and fun. Fortunately, we process a whole lot.
But when he was 11 (I think that the pool girl's age) I was nearby most of
the time.
I do hate though to talk about other people's remote situation though, and
judge without knowing much about it, as with the girl in the pool. Maybe
that was the only time it happened. Maybe she was playing with some ideas
she'd been exposed to. Maybe she was screaming for those girls to set her
straight and tell her to cut it out. Maybe she was terrified that she really
did have special needs and she wanted those girls to verify that she didn't.
I think of the things my kids have said and done in isolated situations over
the years, and there would be no way an unknowing group of emailers could
have enough information to make judgments about it.
Jacki
Gold Standard
Nanci, I really appreciate your post.
beneficially to their potential for our children.
or bad or the kid >is a brat. That will pass, but it
happens to most unschooled >kids and parents.
defensive place. Granted, I am the only one who can make myself feel
defensive...gotta work on that...
differences? Celebrating the differences? Recognizing and helping with the
challenges? It would shortchange our children otherwise.
long time. He started to come around when he found information that helped
him understand himself better. I really meant it when I said it completely
turned his life around. We shared this label with ds Andrew when he was
deeply depressed. What a difference it made for him.
little too close to the situation to feel comfortable responding about it.
We all have different tendencies at varying degrees which makes us more
alike than different. However when it strongly negatively impacts one's
life, it may be more than more typical tendencies.
I would love for people to see that reacting negatively to a label only
continues a negative stigma. Kinda like the stigma some carry about
unschoolers. No need to disconnect because one unschools.
I understand the desire to end all labels, and maybe that is where the
disconnect came. If you think labels are bad, when one is associated with
behaviors you have, then suddenly disconnecting makes sense. But we aren't
talking about labels...we are talking about people.
We can individually decide that a label will or will not cause a disconnect
with another person. If we're talking about a person, what difference does
it make that they choose to utilize a label to help them in their lives?
Jacki
>>But we have the tools that we have, and IYes, same here. It makes a difference when you have tools...using them
>>try to use them to their potential.<<
beneficially to their potential for our children.
>Few families of ANY unschooled kid will go longwithout >thinking or saying that the parents are crazy
or bad or the kid >is a brat. That will pass, but it
happens to most unschooled >kids and parents.
>>Yes, I've seen this. But with kids like mine, theGod you said this so much better than I've been able to. Thank you.
>>differences in behavior can be strong enough that even
>>other unschooling families are really weirded out and
>>judgemental about it unless they have a better
>>understanding of what they are dealing with. Having
>>that sort of social background information that allows
>>you to know where the behaviors of another person are
>>coming from is really helpful, for them and for us.<<
>I think looking for differences is less helpful on alist like >this than looking at similarities.
>SandraThat's where I started to come from as well...than felt lured into a
>>Fortunately I wasn't looking for differences but was
>>just sharing information on a topic (Unschooling kids
>>who are "atypical") that people were responding to
>>with interest.<<
defensive place. Granted, I am the only one who can make myself feel
defensive...gotta work on that...
>>Were I to refuse to acknowledgeYes, I said something similar earlier. What is wrong with seeing the
>>however that my family do es have some challenges and
>>differences from *most* people I would not be doing
>>anyone any favors, least of all us.<<
differences? Celebrating the differences? Recognizing and helping with the
challenges? It would shortchange our children otherwise.
>>It's not unusualOh Nanci, I'm so glad you brought this up. My dh was deeply depressed for a
>>for kids with undiagnosed "differences" to be horribly
>>depressed and have a much harder time dealing with the
>>world, both because they don't understand why things
>>that come to others are so much harder for them<<
long time. He started to come around when he found information that helped
him understand himself better. I really meant it when I said it completely
turned his life around. We shared this label with ds Andrew when he was
deeply depressed. What a difference it made for him.
>>I guess I don't understand why someone (can't rememberThat was me. Dh and Asperger's.
>>who, sorry!) pointing out in a previous post that
>>their husband had a problem that he was relieved to
>>find was associated with his functional developmental
>>differences (autism/aspergers I believe)<<
>>made peopleWell that was certainly my response as well to those posts, but I was a
>>close up, shut off the potential for assosciating
>>themselves or connecting themselves with that
>>behavior. They said something like "Oh I really
>>realted to that, until that word was said..." Why was
>>that so scary and alien? Why couldn't the other list
>>members still feel that connection to another human
>>who has a similar problem to themselves, but perhaps
>>for a different reason, and maybe to a different level
>>or degree?<<
little too close to the situation to feel comfortable responding about it.
We all have different tendencies at varying degrees which makes us more
alike than different. However when it strongly negatively impacts one's
life, it may be more than more typical tendencies.
I would love for people to see that reacting negatively to a label only
continues a negative stigma. Kinda like the stigma some carry about
unschoolers. No need to disconnect because one unschools.
I understand the desire to end all labels, and maybe that is where the
disconnect came. If you think labels are bad, when one is associated with
behaviors you have, then suddenly disconnecting makes sense. But we aren't
talking about labels...we are talking about people.
We can individually decide that a label will or will not cause a disconnect
with another person. If we're talking about a person, what difference does
it make that they choose to utilize a label to help them in their lives?
Jacki
Susan McGlohn
At 20:31 1/10/2006, you wrote:
syndrome, autism, aspergers, diminutive size, etc. differently than other
children?
I thought the discussion was that they shouldn't be labeled or treated any
differently. I must be misunderstanding what you are saying here, Sandra.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
>And is seems sometimes that peopleWait...are you saying it's okay for people to treat a child with down's
>confuse a school's requirement to provide services to every child in
>the school district with some imagined requirement of every neighbor
>and stranger to treat their child the same as that person would treat
>any other child.
syndrome, autism, aspergers, diminutive size, etc. differently than other
children?
I thought the discussion was that they shouldn't be labeled or treated any
differently. I must be misunderstanding what you are saying here, Sandra.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
Susan McGlohn
At 20:40 1/10/2006, you wrote:
when they speak, and are not aware that the other person has been offended
unless that person tells them, and then they really don't understand
why. Although they can be coached to say, "I'm sorry I hurt your feelings,
I didn't mean to." they usually really don't ever get why the person was
offended.
When Aaron was younger and we would go to restaurants that had play areas
or to the playground, on the way there he would be so excited with
anticipation of playing in the tubes or on the equipment with the other
children there. He would already have a game going in his head, and he
would already be in character when we arrived.
He would enter the play area and start roaring like a dinosaur. He would
have his fingers crooked like a T-rex's forelegs and be roaring at these
other children and run right up to them. On two different occasions he got
punched in the face by slightly older boys who didn't appreciate being
"attacked" by a strange kid. He never connected the way he approached
these children with the punches, though. Even after it being explained to
him in various ways. Even after the second time it happened.
It took lots of coaching on my part for many months, lots of "briefing"
about how to approach the children at the playground each time on the way
to the place, before he would go up to them and say, "I'm Aaron. Would you
like to pretend to be a dinosaur with me?" For a long time I had to be
right there next to him, and do it for him, because he couldn't even break
out of his dinosaur mode to do it himself.
He still thinks it is really weird that he has to do it that way. He
doesn't really get that other people are not thinking the exact same things
he is.
Aaron still makes animal noises rather than answer people's questions if he
doesn't understand what they are saying. Even a, "How did you like the
movie?" is sometimes way too general a question and he will just look at
them and quack. We're still working on that one.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
>Do those questions cause him to try not to mumble so much?Autistic people are usually not aware they are being blunt or inappropriate
>Is that a thing that's a challenge for him?
>
>If not, it seems he's using a condition as an excuse.
when they speak, and are not aware that the other person has been offended
unless that person tells them, and then they really don't understand
why. Although they can be coached to say, "I'm sorry I hurt your feelings,
I didn't mean to." they usually really don't ever get why the person was
offended.
When Aaron was younger and we would go to restaurants that had play areas
or to the playground, on the way there he would be so excited with
anticipation of playing in the tubes or on the equipment with the other
children there. He would already have a game going in his head, and he
would already be in character when we arrived.
He would enter the play area and start roaring like a dinosaur. He would
have his fingers crooked like a T-rex's forelegs and be roaring at these
other children and run right up to them. On two different occasions he got
punched in the face by slightly older boys who didn't appreciate being
"attacked" by a strange kid. He never connected the way he approached
these children with the punches, though. Even after it being explained to
him in various ways. Even after the second time it happened.
It took lots of coaching on my part for many months, lots of "briefing"
about how to approach the children at the playground each time on the way
to the place, before he would go up to them and say, "I'm Aaron. Would you
like to pretend to be a dinosaur with me?" For a long time I had to be
right there next to him, and do it for him, because he couldn't even break
out of his dinosaur mode to do it himself.
He still thinks it is really weird that he has to do it that way. He
doesn't really get that other people are not thinking the exact same things
he is.
Aaron still makes animal noises rather than answer people's questions if he
doesn't understand what they are saying. Even a, "How did you like the
movie?" is sometimes way too general a question and he will just look at
them and quack. We're still working on that one.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
Susan McGlohn
At 21:12 1/10/2006, you wrote:
Being right there, helping Aaron to negotiate the playground etiquette, was
really important when he was younger, as I posted before. Once we
realized he lacked that intuitive way of connecting with other kids, and
needed more help to initiate play, it was really imperative that I be right
next to him for the beginning. For a long while I had to do the
initiating and introductions and invitation to play for him. Now I can
just coach him before we walk over from the car. Someday I might not even
have to do that.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
>The parent should help keep the child out of situations he can'tAmen to that!
>handle. Maybe his MOST special need would be to have his mom nearby
>until... until he didn't need her anymore. <g> Same with any
>child. The parent of any child should keep him out of situations he
>can't handle, and be nearby aytime he might need her nearby.
Being right there, helping Aaron to negotiate the playground etiquette, was
really important when he was younger, as I posted before. Once we
realized he lacked that intuitive way of connecting with other kids, and
needed more help to initiate play, it was really imperative that I be right
next to him for the beginning. For a long while I had to do the
initiating and introductions and invitation to play for him. Now I can
just coach him before we walk over from the car. Someday I might not even
have to do that.
Susan (in VA)
wife to VegMan (aka Ted) since 12/86
momma to Sarah (10/89), Andrew (6/91), and Aaron (3/98)
"It's a small world....but a BIG life!" ~ Aaron, age 6
http://radicalchristianunschool.homestead.com/index.html
[Non-text portions of this message have been removed]
Nanci K.
Do you (hypothetical public at large "you" being used here) know why
autism is so little understood and has such a lot of confusion
around it? I think it's largely because people who are
neurologically typical have a very hard time wrapping their minds
around the very different place that autistics are coming from.
There is a general public perception that they could be just like
everyone else if they wanted to be. Trying to understand that what
comes easily to most (like learning social behaviors by natural
modeling, or relating to others in a normal human/primate social
way) is not easy at all for autistics must be really tough. That's
why it's called a "Social Disorder" often. If we really were
chimpanzees or something we autistics would probably be driven out
or beaten to death or something for our social failings.
Autistics have a very hard time understanding that other people may
not think what they think. They/We have a very hard time reading
body language and responding appropriately. Autistics generally
have a very hard time dissembling or knowing what "not to say."
They often fall apart in stress and do the exact opposite of
something helpful to the situation. Stress can be translated as
something as simple as the checker asks you something while you are
trying to write a check and then a car honks loudly and your
children start fighting. That's enough to make me turn "deer in the
headlights" forget how to write a check or write my own name, not
register anything I am hearing (people talking sounds like "Bla, bla
bla bla bla..blablablablablabla" sensory input starts flashing, I
forget what I am doing and I just want everything to stop for about
30 seconds so that I can reset.
Does knowing all this mean that I can automatically correct it?
God, don't I wish!! I work hard at it, but I still sometimes go to
bed at night mentally berating myself for doing and saying "wrong"
things. I ask those around me, friends and loved ones, if I am
doing or saying the appropriate things, or if I have responded
appropriately. Knowing that there is a disconnect helps me to
understand myself better, and to find helpful information on how to
change this, and to find people who are supportive and
undertstanding and helpful to this process. An Autistic will never
*not* be autistic, but they can learn (slowly, methodically) how to
deal with different things in life.
Autistics often work in their lives from a script, a learned set of
cause and effect actions or step by step actions. When life
deviates from the script it can be very upsetting. A lot of
learning to cope with the world of other people for an autistic is
learning fallback scripts (alternate emergency contingencies) for
dealing with when the script fails.
A lot of learning to cope with the world in a non-social way is
learning coping mechanisms for various physical needs or challenges,
like sensory integration problems. An example: Thomas needs to
close his eyes and splay his fingers and make a certain noise in the
back of his throat while I brush his teeth in order to tone down his
tongue seeking to aggressivley eject the toothbrush from his mouth
as a sensory defense. It took a lot of work to get to this point in
teeth brushing and for some reason that set of stims (behaviors to
help self sooth during stimulation) allow him to barely tolerate
teeth brushing. He wants to brush his teeth, by the way, it's not
us forcing him against his will. That works for now, mostly, but he
will eventually need to learn other coping strategies to make it
possible for him to brush his teeth on his own. Thomas also has
motor delays and so he has a lot of trouble using silverware still.
Even soup is mostly eaten with his hands. Mostly that's ok at home
and he rarely eats anywhere else, but we have to encourage him to
use napkins so he isn't wearing most of his food every day and we
make a daily practice of trying to model better table manners and
encourage him to practice improving. He doesn't want to gross his
friends out, but sometimes he does and is mortified by it.
have told them so, and other people have gotten upset with them for
it. They don't know it because they see it when it happens. They
don't see it. They are warning others because they want to avoid
ugly scenes again, which generally distress the autistics more than
the people they have offended. They are also warning others because
they want to learn, they are working on it, and they want people to
like them and to like people in return. They are giving people a
chance to give them the benefit of the doubt and say "Hey, maybe I
am misunderstanding what you are saying, but that sounds offensive
in this way...etc"
certain social things. I'm sorry to have offended you." has made a
we're not allowed to try. Lots of people don't like us and reject
us because they don't understand us. That hurts but it's reality
and I live with it. But we still try every day to learn to move
through society better. I try hard to not be offensive and to
handle things better. I have strict scripts about what it means to
be a good host, be a good guest, be a good driver, be a good
citizen, be a good friend, be a good camper, etc. and I get really
upset when other people don't fulfill their roles in that or don't
live up to those standards. That's an autistic black and white view
and I try to be more flexible about it than I used to be, and accept
other people's differing definitions of those roles.
hurt about things gone and not live in the now, but I so totally
understand wht it means to be an inappropriate person in the world
despite all the effort you can give.
truths that should not be told. It hit me like a brick wall one
day, stunningly and with finality. I still struggle with which
things qualify in which situations for this.
meant when they said I was "stating my opinions like facts" or why
people got upset with me or said I "thought I knew everything" or
that I acted like I was always right. God, I feel like I know
nothing, not everything! I constantly question myself, and change
ideas and listen to what other people say. I learn from everyone
around me, or try to. How could they get such a wrong opinion of
me?! I learned to try to soften my language (still forget sometimes
as Sandra reminded me in that recent post.) I understand now that
my written, and sometimes my spoken voice, can be pendantic and seem
preachy. I learned that what I am really doing is verbally stimming
and processing and that I am repetitive while I do this
(particularly in spoken language) and am learning to do this under
my breath instead of out loud because other people find it annoying
or worse. I learned that I have a tendancy to analyze people and
life in general in my attempt to understand them, generally outloud
(oops!) This is not polite or preferrable either I now understand,
so I am trying consciously not to do this. By the way that's
something I learned from my neice Nicole. I have a hard time just
listening and not offering my thoughts and opinions, and I realize
they are not always wanted and that listening is sometimes all that
is wanted and needed. Even a friend with a problem may not want to
hear my possible solutions and I need to remember to ask before I
offer them. This is added to my script then listening to friends
problems: Ask before offering advice.
autism is so little understood and has such a lot of confusion
around it? I think it's largely because people who are
neurologically typical have a very hard time wrapping their minds
around the very different place that autistics are coming from.
There is a general public perception that they could be just like
everyone else if they wanted to be. Trying to understand that what
comes easily to most (like learning social behaviors by natural
modeling, or relating to others in a normal human/primate social
way) is not easy at all for autistics must be really tough. That's
why it's called a "Social Disorder" often. If we really were
chimpanzees or something we autistics would probably be driven out
or beaten to death or something for our social failings.
Autistics have a very hard time understanding that other people may
not think what they think. They/We have a very hard time reading
body language and responding appropriately. Autistics generally
have a very hard time dissembling or knowing what "not to say."
They often fall apart in stress and do the exact opposite of
something helpful to the situation. Stress can be translated as
something as simple as the checker asks you something while you are
trying to write a check and then a car honks loudly and your
children start fighting. That's enough to make me turn "deer in the
headlights" forget how to write a check or write my own name, not
register anything I am hearing (people talking sounds like "Bla, bla
bla bla bla..blablablablablabla" sensory input starts flashing, I
forget what I am doing and I just want everything to stop for about
30 seconds so that I can reset.
Does knowing all this mean that I can automatically correct it?
God, don't I wish!! I work hard at it, but I still sometimes go to
bed at night mentally berating myself for doing and saying "wrong"
things. I ask those around me, friends and loved ones, if I am
doing or saying the appropriate things, or if I have responded
appropriately. Knowing that there is a disconnect helps me to
understand myself better, and to find helpful information on how to
change this, and to find people who are supportive and
undertstanding and helpful to this process. An Autistic will never
*not* be autistic, but they can learn (slowly, methodically) how to
deal with different things in life.
Autistics often work in their lives from a script, a learned set of
cause and effect actions or step by step actions. When life
deviates from the script it can be very upsetting. A lot of
learning to cope with the world of other people for an autistic is
learning fallback scripts (alternate emergency contingencies) for
dealing with when the script fails.
A lot of learning to cope with the world in a non-social way is
learning coping mechanisms for various physical needs or challenges,
like sensory integration problems. An example: Thomas needs to
close his eyes and splay his fingers and make a certain noise in the
back of his throat while I brush his teeth in order to tone down his
tongue seeking to aggressivley eject the toothbrush from his mouth
as a sensory defense. It took a lot of work to get to this point in
teeth brushing and for some reason that set of stims (behaviors to
help self sooth during stimulation) allow him to barely tolerate
teeth brushing. He wants to brush his teeth, by the way, it's not
us forcing him against his will. That works for now, mostly, but he
will eventually need to learn other coping strategies to make it
possible for him to brush his teeth on his own. Thomas also has
motor delays and so he has a lot of trouble using silverware still.
Even soup is mostly eaten with his hands. Mostly that's ok at home
and he rarely eats anywhere else, but we have to encourage him to
use napkins so he isn't wearing most of his food every day and we
make a daily practice of trying to model better table manners and
encourage him to practice improving. He doesn't want to gross his
friends out, but sometimes he does and is mortified by it.
> A person who knows enough to say he is sometimes impolite orbingo. They know they are sometimes impolite because other people
>inappropriate does not necessarily AT ALL know right then how to
>make it NOT so.
have told them so, and other people have gotten upset with them for
it. They don't know it because they see it when it happens. They
don't see it. They are warning others because they want to avoid
ugly scenes again, which generally distress the autistics more than
the people they have offended. They are also warning others because
they want to learn, they are working on it, and they want people to
like them and to like people in return. They are giving people a
chance to give them the benefit of the doubt and say "Hey, maybe I
am misunderstanding what you are saying, but that sounds offensive
in this way...etc"
> "I see your mad. Whatever I did, I didn't mean to make you mad.What did I do?" followed by "I am autistic and still learning
certain social things. I'm sorry to have offended you." has made a
>huge difference in dh's life. No excuses, just explanations.Right, just like that.
>But that doesn't mean because they don't want to, theyRight exactly.
>automatically know how not to.
> Are you saying if you don't know how tofar, you should not go into society? That's what this analogy says
>communicate "appropriately", as in the way society has created thus
>to me.Me too, I don't understand that analogy. It's hard to learn if
we're not allowed to try. Lots of people don't like us and reject
us because they don't understand us. That hurts but it's reality
and I live with it. But we still try every day to learn to move
through society better. I try hard to not be offensive and to
handle things better. I have strict scripts about what it means to
be a good host, be a good guest, be a good driver, be a good
citizen, be a good friend, be a good camper, etc. and I get really
upset when other people don't fulfill their roles in that or don't
live up to those standards. That's an autistic black and white view
and I try to be more flexible about it than I used to be, and accept
other people's differing definitions of those roles.
> A person with a neurological condition is not doing somethingRight.
>intentionally wrong, or breaking a contract.
> Let me tell you, my husband would probably have given his rightOh I feel that hurt. I won't dwell on this past or it will make me
>arm to not have gone through the tortures of being
>an "inappropriate" person in this world.
hurt about things gone and not live in the now, but I so totally
understand wht it means to be an inappropriate person in the world
despite all the effort you can give.
>To this day he often does not know when the truth should orI just in recent years finally *groked* the idea that there are
>shouldn't be told.
truths that should not be told. It hit me like a brick wall one
day, stunningly and with finality. I still struggle with which
things qualify in which situations for this.
> Yes a good suggestion that we've figured out here. Softening theI learned this on the internet. I didn't understand what people
> sentences...it is a structured learning thing. And the more that
>you want people to not be mad at you, the more you want to learn
>this and other lessons.
meant when they said I was "stating my opinions like facts" or why
people got upset with me or said I "thought I knew everything" or
that I acted like I was always right. God, I feel like I know
nothing, not everything! I constantly question myself, and change
ideas and listen to what other people say. I learn from everyone
around me, or try to. How could they get such a wrong opinion of
me?! I learned to try to soften my language (still forget sometimes
as Sandra reminded me in that recent post.) I understand now that
my written, and sometimes my spoken voice, can be pendantic and seem
preachy. I learned that what I am really doing is verbally stimming
and processing and that I am repetitive while I do this
(particularly in spoken language) and am learning to do this under
my breath instead of out loud because other people find it annoying
or worse. I learned that I have a tendancy to analyze people and
life in general in my attempt to understand them, generally outloud
(oops!) This is not polite or preferrable either I now understand,
so I am trying consciously not to do this. By the way that's
something I learned from my neice Nicole. I have a hard time just
listening and not offering my thoughts and opinions, and I realize
they are not always wanted and that listening is sometimes all that
is wanted and needed. Even a friend with a problem may not want to
hear my possible solutions and I need to remember to ask before I
offer them. This is added to my script then listening to friends
problems: Ask before offering advice.
>...learning that the other person may think very differently. ItOh boy does it...
>takes a kind of mental energy to go this distance
>They WORK over time to understand this and are at varying degreesof understanding it, and like many learned skills, it
> can come and go.Sounds familiar.
> And in the meantime, it can be useful to say, "I'm autisticThanks Jacki, that was great!
> and working on this."
> Jacki
Sandra Dodd
On Jan 10, 2006, at 10:15 PM, Gold Standard wrote:
Only into safe and acceptable parts. They probably shouldn't go into
psychotherapy or grief counselling.
"Into society" is a really big place, and there are parts that
require certain kinds of responses and skills, and few to no people
are welcome everywhere. If we include single-sex toilets, then
nobody's welcome everywhere.
-=-Again, this is apples and oranges Sandra. A person with a
neurological
condition is not doing something intentionally wrong, or breaking a
contract. In our situation, they are still figuring out what the damn
contract says!-=-
One who never can figure out what the contract says should not be
signing contracts.
-=-Your examples only add to the lack of understanding and the
intolerance of our society,
imho.-=-
MY EXAMPLES are adding to lack of understanding?
MY EXAMPLES are adding to intolerance?
If people can't even look at what problems might look like, we can't
discuss labels.
If someone can't take analogies and see them as the parallels they
are intended to be rather than literal news, then that person won't
be participating in a discussion as fully as the discussion deserves.
-=-Yes, we should all work toward treating each other well. AND yes some
people are way behind the curve in that area...(they are way ABOVE
the curve
in other areas though...and my guess is that because they are so
smart in
certain isolated areas [think Mozart, Einstein], their social
development
suffers) but that is no excuse for US to not be understanding about
it.-=-
Not every single person is way above the curve in some area. This
sounds like rhetoric and platitude.
Where natural learning is concerned the curve isn't an issue. Where
unschooling is concerned it doesn't matter if someone somewhere
considers a child to be gifted or better or worse than some other
child or group of children.
It does not matter.
-=-Talking in these generalities has little meaning to me.-=-
Then when a post doesn't make sense, just let it flow by like water
under a bridge. Responding to something that makes no sense to you
doesn't add to the discussion of ideas.
-=-This is part of why a list that has lots of people with this kind of
situation in their homes IS helpful...not to give excuses for
behavior or
promote "self-fulfilling prophecies", but to talk about our ACTUAL
experiences. Otherwise, it is often theory and assumptive and
guesswork. And
can be SO non-understanding and, well, offensive, as I have found
some of
this post to be.-=-
I was asked to explain why I made the statement that some use it as
an excuse and I explained. Don't now complain that explanations were
made and examples were given.
-=-That said, I do think it is important to maintain an "I can do
anything"
attitude no matter what "condition" one might have. That is a given
in my
house.-=-
Rather than claim that one can do anything, I try to go with each
child's interests, talents and abilities and help them do things they
really find interesting and doable. "Anything" creates a huge
field of potential failure. If a kid with bad eyesight wants to be a
test pilot, parents will do him a disservice by saying "you can do
anything." He might like video game flight simulators; he might like
research on corrective eye surgery. There are tons of related
things. A narrow goal creates more failure than a broad goal.
There is American mythology that says all men are created equal.
That is not literally true. It is poetically true. It is, in
contrast to the 18th century view of layers of society and classes of
people, a radical and beautiful idea, but even those who wrote it
meant all white male land-owners, not just every human who's born or
moves to the U.S.
-=->>"It seems
sentences...it is a structured learning thing. -=-
Why does it have to be "a structured learning thing"? The principle
of qualified statements being potentially true while absolute
statements are more likely to be untrue is something that can be
learned, demonstrated, discussed, and experimented with without a
structured learning situation.
Sandra
> Are you saying if you don't know how to communicate===============
> "appropriately", as in
> the way society has created thus far, you should not go into
> society? That's
> what this analogy says to me.
Only into safe and acceptable parts. They probably shouldn't go into
psychotherapy or grief counselling.
"Into society" is a really big place, and there are parts that
require certain kinds of responses and skills, and few to no people
are welcome everywhere. If we include single-sex toilets, then
nobody's welcome everywhere.
-=-Again, this is apples and oranges Sandra. A person with a
neurological
condition is not doing something intentionally wrong, or breaking a
contract. In our situation, they are still figuring out what the damn
contract says!-=-
One who never can figure out what the contract says should not be
signing contracts.
-=-Your examples only add to the lack of understanding and the
intolerance of our society,
imho.-=-
MY EXAMPLES are adding to lack of understanding?
MY EXAMPLES are adding to intolerance?
If people can't even look at what problems might look like, we can't
discuss labels.
If someone can't take analogies and see them as the parallels they
are intended to be rather than literal news, then that person won't
be participating in a discussion as fully as the discussion deserves.
-=-Yes, we should all work toward treating each other well. AND yes some
people are way behind the curve in that area...(they are way ABOVE
the curve
in other areas though...and my guess is that because they are so
smart in
certain isolated areas [think Mozart, Einstein], their social
development
suffers) but that is no excuse for US to not be understanding about
it.-=-
Not every single person is way above the curve in some area. This
sounds like rhetoric and platitude.
Where natural learning is concerned the curve isn't an issue. Where
unschooling is concerned it doesn't matter if someone somewhere
considers a child to be gifted or better or worse than some other
child or group of children.
It does not matter.
-=-Talking in these generalities has little meaning to me.-=-
Then when a post doesn't make sense, just let it flow by like water
under a bridge. Responding to something that makes no sense to you
doesn't add to the discussion of ideas.
-=-This is part of why a list that has lots of people with this kind of
situation in their homes IS helpful...not to give excuses for
behavior or
promote "self-fulfilling prophecies", but to talk about our ACTUAL
experiences. Otherwise, it is often theory and assumptive and
guesswork. And
can be SO non-understanding and, well, offensive, as I have found
some of
this post to be.-=-
I was asked to explain why I made the statement that some use it as
an excuse and I explained. Don't now complain that explanations were
made and examples were given.
-=-That said, I do think it is important to maintain an "I can do
anything"
attitude no matter what "condition" one might have. That is a given
in my
house.-=-
Rather than claim that one can do anything, I try to go with each
child's interests, talents and abilities and help them do things they
really find interesting and doable. "Anything" creates a huge
field of potential failure. If a kid with bad eyesight wants to be a
test pilot, parents will do him a disservice by saying "you can do
anything." He might like video game flight simulators; he might like
research on corrective eye surgery. There are tons of related
things. A narrow goal creates more failure than a broad goal.
There is American mythology that says all men are created equal.
That is not literally true. It is poetically true. It is, in
contrast to the 18th century view of layers of society and classes of
people, a radical and beautiful idea, but even those who wrote it
meant all white male land-owners, not just every human who's born or
moves to the U.S.
-=->>"It seems
>>to me" or "I feel that..." is generally a better way to preface a-=-Yes a good suggestion that we've figured out here. Softening the
>>statement<<
sentences...it is a structured learning thing. -=-
Why does it have to be "a structured learning thing"? The principle
of qualified statements being potentially true while absolute
statements are more likely to be untrue is something that can be
learned, demonstrated, discussed, and experimented with without a
structured learning situation.
Sandra
Nanci K.
>The principleIf by "structured learning situation" she meant one structured by
>of qualified statements being potentially true while absolute
>statements are more likely to be untrue is something that can be
>learned, demonstrated, discussed, and experimented with without a
>structured learning situation.
>Sandra
one's self or as an assist to your self process, than no, it is not
possible to learn those things without that structure if you are
autistic, in my experience. or at least it's really, really hard
without the structure. That's internally structured that I mean, not
classroom structured, not schoolish structure. The structured
environment of mailing lists are what taught me that very principle of
which you speak, AND then helped me learn to recognize the difference
between an "absolute statement" and what is a "qualified statement."
Nanci K.
Nanci K.
> One who never can figure out what the contract says should not beThis confuses me. Is it an analogy? What is the contract we're
> signing contracts.
referring to? I thought she was referring to life and social
interaction when she said we were still trying to figure out what
the contract says. By not entering into the contract, should we
have arranged not to have been born? Or should we commit suicide?
I'm not being flippant, really, I am confused and would like to
understand what this means.
> MY EXAMPLES are adding to lack of understanding?I think she meant that your examples illustrate a common lack of
> MY EXAMPLES are adding to intolerance?
understanding about autism. I think.
> If someone can't take analogies and see them as the parallelswon't be participating in a discussion as fully as the discussion
>they are intended to be rather than literal news, then that person
>deserves.That's true. But unfortunately being much too literal is a common
autistic failing. I would like to continue this discussion later,
but I have to get to bed now. I hope this is not considered too off
topic or contentious. One of the reasons I think there is a lack of
understanding about autism is that it's not alright to discuss it
anywhere but among autism "groups" or similar forums, where they
already know what youknow and there isn't anyone there who isn't
already touched by it in their lives. That doesn't help. I would
like to think that discussing the different ways neurology can vary
and lead to these different issues among how people percieve things
and react to things and interact with each other is a topic that can
be looked at in a lot of ways and have positive repercussions on an
unschooling journey and spin off into other topics.
Nanci K.