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[CCBC-Net] CCBC-Net Digest, Vol 15, Issue 15
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From: Kristin Pachal <kpachal>
Date: Tue, 17 Oct 2006 12:32:10 -0500
After reading "The Curious Incident of the Dog in the Nighttime" it made it so clear the reasoning behind why sometimes my autistic students do what they do. On some levels I understood, but this book really reinforced it! It is a reminder of what their mind goes through on things that are seemingly simple.
Kristin Pachal
Deforest Area High School Social Studies Department
>>> "Carol E. Jones" <CEJones at rrlib.net> 10/17/06 12:27 PM >>>
What I loved about "The Curious Incident of the Dog in the Nighttime"
(the narrator of which has Autism) and "Icy Sparks" (the narrator of which has Tourettes Syndrome) was that I could see from the inside what a day was like for the narrators. For those of you with experience with Autism and Tourettes and who have read these books, would you call the portrayals accurate?
Carol Elizabeth Jones Rockbridge Regional Library 138 South Main Street Lexington, VA 24450
-----Original Message----- From: ccbc-net-request at ccbc.education.wisc.edu
[mailto:ccbc-net-request at ccbc.education.wisc.edu] Sent: Tuesday, October 17, 2006 1:00 PM To: ccbc-net at ccbc.education.wisc.edu Subject: CCBC-Net Digest, Vol 15, Issue 15
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Today's Topics:
1. Disabilities--autism (Cynthia Lord)
2. Re: Disabilities--autism (Kellye Carter Crocker)
----------------------------------------------------------------------
Message: 1 Date: Mon, 16 Oct 2006 21:32:59 -0400 From: "Cynthia Lord" <jbcl at blazenetme.net> Subject: [CCBC-Net] Disabilities--autism To: <ccbc-net at ccbc.ad.education.wisc.edu> Message-ID: <00ca01c6f18c$2e4c0fd0$9b503f42 at D1B51P81Cindy> Content-Type: text/plain; charset="iso-8859-1"
Hi, I sent this message early last Friday morning, but it has never shown up. So I'm trying one last time before we officially change topic.
This was in response to three topics posted at the end of last week: autism, a sibling's burden (or not), and "people-first" language.
--------------------- I do think you will see more books featuring autism in the years to come. Partly because of the success of THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME, but also, there are simply more children with autism than ever before. When my son was diagnosed with autism about 12 years ago, the statistic quoted was 1 in 10,000. Now, the statistic is 1 in 166.
Personally, I wish authors would approach writing about developmentally-disabled characters with the same hesitancy and carefulness as most approach writing about a culture that is not their own. Otherwise, I think it's hard not to skim off the surface behaviors or challenges and miss the contrast and complexity underneath. There is often anger in the autism community over media portrayals (more often aimed at Hollywood than books, but sometimes books as well) where it seems like a character with autism was used as a device.
I can only speak for myself, but I would hate to see it become a goal of children's literature to hold up as the ideal characters whose disabilities can be forgotten, because they don't matter to the other characters or the plot. That may be possible in some situations, but no one in my household can ever forget about my son's disability. We have to think about it every hour, every time we leave the house, every inch taller and pound heavier that he grows.
If the definition of burden is "a heavy load," then yes, absolutely, my son's autism is a burden for his sixteen-year-old sister. She told me once about a dream she had where I had fallen out of the car and was being left behind (to die! Yikes!) and the driver of the car wouldn't stop. She was embarrassed to admit to me that she pleaded with the driver, "But I will have to take care of my brother without her!"
We joked about how she hadn't worried about me in the dream, but inside my heart broke, and I wished I could've said to her, "Oh honey, you won't have to worry about that." But there will probably come a time in her life where she is her brother's guardian. She is smart enough to know it, and I love her enough not to pretend it isn't the truth. Can you imagine knowing you are already carrying a lifetime responsibility at the age of 12, 14, 16? It changes who you are, I think.
That heavy load exists right alongside joy and humor and great love, though, and that's the complicated part. To live with someone not motivated by social concerns is challenging, but also, often hilarious. My daughter said to my son just yesterday, "You are the only teenager I know who goes into his room to blast music and picks ENYA!" And laughing about that is as real as the hard parts.
I personally like portrayals of autism that show that wide emotional contrast--because it feels real and familiar to me. I knew within a few pages that AL CAPONE DOES MY SHIRTS was written by someone with direct experience with autism. And though not about autism, I felt the same way about TRU CONFESSIONS. Both those main characters love their siblings--and love them "even though" and "even when," which feels very real to me.
"You are not alone" is such a powerful message, and in my experience, the world puts tremendous pressure on siblings of children with autism to be good and kind and understanding. The truth is that books are one of the few places available for some siblings to explore what are often quite complicated feelings. One 10-year-old sibling wrote to me recently, "I was so scared I was the only person who felt this way."
Lastly, on the subject of "people-first language," I think part of the issue is that some terms carry historical baggage with them.
"Autistic" carries a hard history with it that "has autism" does not.
Admittedly, "people first" terms get clunky sometimes. You should have seen my editor and I trying to get the jacket flap on RULES to work without using two "withs.". . ."with her brother with autism." It's very imperfect, but I do think a desire to move forward and leave history behind is at the root of many families' preference for the newer terms.
My very best wishes to you all, Cindy
cindy at cynthialord.com Cynthia Lord, RULES
------------------------------
Message: 2 Date: Mon, 16 Oct 2006 20:51:08 -0500 From: Kellye Carter Crocker <kelcrocker at mchsi.com> Subject: Re: [CCBC-Net] Disabilities--autism To: Cynthia Lord <jbcl at blazenetme.net>,
<ccbc-net at ccbc.ad.education.wisc.edu> Message-ID: <C159A13C.ED6E%kelcrocker at mchsi.com> Content-Type: text/plain; charset="US-ASCII"
What a great post, Cynthia! Thank you for sharing your thoughts and experiences about this.
I have tried to follow the conversation but, for some reason, I've had times this week when none of my listserve messages (this one and others) seem to be coming through. So, if someone has mentioned this, I apologize for the repetition: One of my favorite all-time books is Ron Koertge's Stoner and Spaz. One of the main character's cerebral palsy is part of the story because it's obviously an important part of who he is in the world, but the story never reads like a "problem" novel or an "issue" novel, nor does it pretend that a kid with cerebral palsy wouldn't face discrimination or other difficulties, just as any well-drawn ya character will face difficulties based on some aspect of who he or she is. (That is, conflict equals story.) I feel very inarticulate in trying to express my thoughts about this. But I marvel at how Koertge's characters live and breathe on the page.
Best, Kellye Carter Crocker Freelance writer/aspiring author
on 10/16/06 8:32 PM, Cynthia Lord at jbcl at blazenetme.net wrote:
> Hi, I sent this message early last Friday morning, but it has never
shown up.
> So I'm trying one last time before we officially change topic.
>
> This was in response to three topics posted at the end of last week:
autism, a
> sibling's burden (or not), and "people-first" language.
>
> ---------------------
> I do think you will see more books featuring autism in the years to
come.
> Partly because of the success of THE CURIOUS INCIDENT OF THE DOG IN
THE
> NIGHT-TIME, but also, there are simply more children with autism
than ever
> before. When my son was diagnosed with autism about 12 years ago,
the
> statistic quoted was 1 in 10,000. Now, the statistic is 1 in 166.
>
> Personally, I wish authors would approach writing about
> developmentally-disabled characters with the same hesitancy and
carefulness as
> most approach writing about a culture that is not their own.
Otherwise, I
> think it's hard not to skim off the surface behaviors or challenges
and miss
> the contrast and complexity underneath. There is often anger in the
autism
> community over media portrayals (more often aimed at Hollywood than
books, but
> sometimes books as well) where it seems like a character with autism
was used
> as a device.
>
> I can only speak for myself, but I would hate to see it become a
goal of
> children's literature to hold up as the ideal characters whose
disabilities
> can be forgotten, because they don't matter to the other characters
or the
> plot. That may be possible in some situations, but no one in my
household can
> ever forget about my son's disability. We have to think about it
every hour,
> every time we leave the house, every inch taller and pound heavier
that he
> grows.
>
> If the definition of burden is "a heavy load," then yes, absolutely,
my son's
> autism is a burden for his sixteen-year-old sister. She told me
once about a
> dream she had where I had fallen out of the car and was being left
behind (to
> die! Yikes!) and the driver of the car wouldn't stop. She was
embarrassed to
> admit to me that she pleaded with the driver, "But I will have to
take care of
> my brother without her!"
>
> We joked about how she hadn't worried about me in the dream, but
inside my
> heart broke, and I wished I could've said to her, "Oh honey, you
won't have to
> worry about that." But there will probably come a time in her life
where she
> is her brother's guardian. She is smart enough to know it, and I
love her
> enough not to pretend it isn't the truth. Can you imagine knowing
you are
> already carrying a lifetime responsibility at the age of 12, 14, 16?
It
> changes who you are, I think.
>
> That heavy load exists right alongside joy and humor and great love,
though,
> and that's the complicated part. To live with someone not motivated
by social
> concerns is challenging, but also, often hilarious. My daughter
said to my
> son just yesterday, "You are the only teenager I know who goes into
his room
> to blast music and picks ENYA!" And laughing about that is as real
as the
> hard parts.
>
> I personally like portrayals of autism that show that wide emotional
> contrast--because it feels real and familiar to me. I knew within a
few pages
> that AL CAPONE DOES MY SHIRTS was written by someone with direct
experience
> with autism. And though not about autism, I felt the same way about
TRU
> CONFESSIONS. Both those main characters love their siblings--and
love them
> "even though" and "even when," which feels very real to me.
>
> "You are not alone" is such a powerful message, and in my
experience, the
> world puts tremendous pressure on siblings of children with autism
to be good
> and kind and understanding. The truth is that books are one of the
few places
> available for some siblings to explore what are often quite
complicated
> feelings. One 10-year-old sibling wrote to me recently, "I was so
scared I was
> the only person who felt this way."
>
> Lastly, on the subject of "people-first language," I think part of
the issue
> is that some terms carry historical baggage with them. "Autistic"
carries a
> hard history with it that "has autism" does not.
>
> Admittedly, "people first" terms get clunky sometimes. You should
have seen
> my editor and I trying to get the jacket flap on RULES to work
without using
> two "withs.". . ."with her brother with autism." It's very
imperfect, but I
> do think a desire to move forward and leave history behind is at the
root of
> many families' preference for the newer terms.
>
> My very best wishes to you all,
> Cindy
>
> cindy at cynthialord.com
> Cynthia Lord, RULES
> _______________________________________________
> CCBC-Net mailing list
> CCBC-Net at ccbc.education.wisc.edu
> Visit this link to read archives or to unsubscribe...
> http://ccbc.education.wisc.edu/mailman/listinfo/ccbc-net
------------------------------
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End of CCBC-Net Digest, Vol 15, Issue 15
****************************************
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Received on Tue 17 Oct 2006 12:32:10 PM CDT
Date: Tue, 17 Oct 2006 12:32:10 -0500
After reading "The Curious Incident of the Dog in the Nighttime" it made it so clear the reasoning behind why sometimes my autistic students do what they do. On some levels I understood, but this book really reinforced it! It is a reminder of what their mind goes through on things that are seemingly simple.
Kristin Pachal
Deforest Area High School Social Studies Department
>>> "Carol E. Jones" <CEJones at rrlib.net> 10/17/06 12:27 PM >>>
What I loved about "The Curious Incident of the Dog in the Nighttime"
(the narrator of which has Autism) and "Icy Sparks" (the narrator of which has Tourettes Syndrome) was that I could see from the inside what a day was like for the narrators. For those of you with experience with Autism and Tourettes and who have read these books, would you call the portrayals accurate?
Carol Elizabeth Jones Rockbridge Regional Library 138 South Main Street Lexington, VA 24450
-----Original Message----- From: ccbc-net-request at ccbc.education.wisc.edu
[mailto:ccbc-net-request at ccbc.education.wisc.edu] Sent: Tuesday, October 17, 2006 1:00 PM To: ccbc-net at ccbc.education.wisc.edu Subject: CCBC-Net Digest, Vol 15, Issue 15
Send CCBC-Net mailing list submissions to
ccbc-net at ccbc.education.wisc.edu
To subscribe or unsubscribe via the World Wide Web, visit
http://ccbc.education.wisc.edu/mailman/listinfo/ccbc-net or, via email, send a message with subject or body 'help' to
ccbc-net-request at ccbc.education.wisc.edu
You can reach the person managing the list at
ccbc-net-owner at ccbc.education.wisc.edu
When replying, please edit your Subject line so it is more specific than "Re: Contents of CCBC-Net digest..."
Today's Topics:
1. Disabilities--autism (Cynthia Lord)
2. Re: Disabilities--autism (Kellye Carter Crocker)
----------------------------------------------------------------------
Message: 1 Date: Mon, 16 Oct 2006 21:32:59 -0400 From: "Cynthia Lord" <jbcl at blazenetme.net> Subject: [CCBC-Net] Disabilities--autism To: <ccbc-net at ccbc.ad.education.wisc.edu> Message-ID: <00ca01c6f18c$2e4c0fd0$9b503f42 at D1B51P81Cindy> Content-Type: text/plain; charset="iso-8859-1"
Hi, I sent this message early last Friday morning, but it has never shown up. So I'm trying one last time before we officially change topic.
This was in response to three topics posted at the end of last week: autism, a sibling's burden (or not), and "people-first" language.
--------------------- I do think you will see more books featuring autism in the years to come. Partly because of the success of THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME, but also, there are simply more children with autism than ever before. When my son was diagnosed with autism about 12 years ago, the statistic quoted was 1 in 10,000. Now, the statistic is 1 in 166.
Personally, I wish authors would approach writing about developmentally-disabled characters with the same hesitancy and carefulness as most approach writing about a culture that is not their own. Otherwise, I think it's hard not to skim off the surface behaviors or challenges and miss the contrast and complexity underneath. There is often anger in the autism community over media portrayals (more often aimed at Hollywood than books, but sometimes books as well) where it seems like a character with autism was used as a device.
I can only speak for myself, but I would hate to see it become a goal of children's literature to hold up as the ideal characters whose disabilities can be forgotten, because they don't matter to the other characters or the plot. That may be possible in some situations, but no one in my household can ever forget about my son's disability. We have to think about it every hour, every time we leave the house, every inch taller and pound heavier that he grows.
If the definition of burden is "a heavy load," then yes, absolutely, my son's autism is a burden for his sixteen-year-old sister. She told me once about a dream she had where I had fallen out of the car and was being left behind (to die! Yikes!) and the driver of the car wouldn't stop. She was embarrassed to admit to me that she pleaded with the driver, "But I will have to take care of my brother without her!"
We joked about how she hadn't worried about me in the dream, but inside my heart broke, and I wished I could've said to her, "Oh honey, you won't have to worry about that." But there will probably come a time in her life where she is her brother's guardian. She is smart enough to know it, and I love her enough not to pretend it isn't the truth. Can you imagine knowing you are already carrying a lifetime responsibility at the age of 12, 14, 16? It changes who you are, I think.
That heavy load exists right alongside joy and humor and great love, though, and that's the complicated part. To live with someone not motivated by social concerns is challenging, but also, often hilarious. My daughter said to my son just yesterday, "You are the only teenager I know who goes into his room to blast music and picks ENYA!" And laughing about that is as real as the hard parts.
I personally like portrayals of autism that show that wide emotional contrast--because it feels real and familiar to me. I knew within a few pages that AL CAPONE DOES MY SHIRTS was written by someone with direct experience with autism. And though not about autism, I felt the same way about TRU CONFESSIONS. Both those main characters love their siblings--and love them "even though" and "even when," which feels very real to me.
"You are not alone" is such a powerful message, and in my experience, the world puts tremendous pressure on siblings of children with autism to be good and kind and understanding. The truth is that books are one of the few places available for some siblings to explore what are often quite complicated feelings. One 10-year-old sibling wrote to me recently, "I was so scared I was the only person who felt this way."
Lastly, on the subject of "people-first language," I think part of the issue is that some terms carry historical baggage with them.
"Autistic" carries a hard history with it that "has autism" does not.
Admittedly, "people first" terms get clunky sometimes. You should have seen my editor and I trying to get the jacket flap on RULES to work without using two "withs.". . ."with her brother with autism." It's very imperfect, but I do think a desire to move forward and leave history behind is at the root of many families' preference for the newer terms.
My very best wishes to you all, Cindy
cindy at cynthialord.com Cynthia Lord, RULES
------------------------------
Message: 2 Date: Mon, 16 Oct 2006 20:51:08 -0500 From: Kellye Carter Crocker <kelcrocker at mchsi.com> Subject: Re: [CCBC-Net] Disabilities--autism To: Cynthia Lord <jbcl at blazenetme.net>,
<ccbc-net at ccbc.ad.education.wisc.edu> Message-ID: <C159A13C.ED6E%kelcrocker at mchsi.com> Content-Type: text/plain; charset="US-ASCII"
What a great post, Cynthia! Thank you for sharing your thoughts and experiences about this.
I have tried to follow the conversation but, for some reason, I've had times this week when none of my listserve messages (this one and others) seem to be coming through. So, if someone has mentioned this, I apologize for the repetition: One of my favorite all-time books is Ron Koertge's Stoner and Spaz. One of the main character's cerebral palsy is part of the story because it's obviously an important part of who he is in the world, but the story never reads like a "problem" novel or an "issue" novel, nor does it pretend that a kid with cerebral palsy wouldn't face discrimination or other difficulties, just as any well-drawn ya character will face difficulties based on some aspect of who he or she is. (That is, conflict equals story.) I feel very inarticulate in trying to express my thoughts about this. But I marvel at how Koertge's characters live and breathe on the page.
Best, Kellye Carter Crocker Freelance writer/aspiring author
on 10/16/06 8:32 PM, Cynthia Lord at jbcl at blazenetme.net wrote:
> Hi, I sent this message early last Friday morning, but it has never
shown up.
> So I'm trying one last time before we officially change topic.
>
> This was in response to three topics posted at the end of last week:
autism, a
> sibling's burden (or not), and "people-first" language.
>
> ---------------------
> I do think you will see more books featuring autism in the years to
come.
> Partly because of the success of THE CURIOUS INCIDENT OF THE DOG IN
THE
> NIGHT-TIME, but also, there are simply more children with autism
than ever
> before. When my son was diagnosed with autism about 12 years ago,
the
> statistic quoted was 1 in 10,000. Now, the statistic is 1 in 166.
>
> Personally, I wish authors would approach writing about
> developmentally-disabled characters with the same hesitancy and
carefulness as
> most approach writing about a culture that is not their own.
Otherwise, I
> think it's hard not to skim off the surface behaviors or challenges
and miss
> the contrast and complexity underneath. There is often anger in the
autism
> community over media portrayals (more often aimed at Hollywood than
books, but
> sometimes books as well) where it seems like a character with autism
was used
> as a device.
>
> I can only speak for myself, but I would hate to see it become a
goal of
> children's literature to hold up as the ideal characters whose
disabilities
> can be forgotten, because they don't matter to the other characters
or the
> plot. That may be possible in some situations, but no one in my
household can
> ever forget about my son's disability. We have to think about it
every hour,
> every time we leave the house, every inch taller and pound heavier
that he
> grows.
>
> If the definition of burden is "a heavy load," then yes, absolutely,
my son's
> autism is a burden for his sixteen-year-old sister. She told me
once about a
> dream she had where I had fallen out of the car and was being left
behind (to
> die! Yikes!) and the driver of the car wouldn't stop. She was
embarrassed to
> admit to me that she pleaded with the driver, "But I will have to
take care of
> my brother without her!"
>
> We joked about how she hadn't worried about me in the dream, but
inside my
> heart broke, and I wished I could've said to her, "Oh honey, you
won't have to
> worry about that." But there will probably come a time in her life
where she
> is her brother's guardian. She is smart enough to know it, and I
love her
> enough not to pretend it isn't the truth. Can you imagine knowing
you are
> already carrying a lifetime responsibility at the age of 12, 14, 16?
It
> changes who you are, I think.
>
> That heavy load exists right alongside joy and humor and great love,
though,
> and that's the complicated part. To live with someone not motivated
by social
> concerns is challenging, but also, often hilarious. My daughter
said to my
> son just yesterday, "You are the only teenager I know who goes into
his room
> to blast music and picks ENYA!" And laughing about that is as real
as the
> hard parts.
>
> I personally like portrayals of autism that show that wide emotional
> contrast--because it feels real and familiar to me. I knew within a
few pages
> that AL CAPONE DOES MY SHIRTS was written by someone with direct
experience
> with autism. And though not about autism, I felt the same way about
TRU
> CONFESSIONS. Both those main characters love their siblings--and
love them
> "even though" and "even when," which feels very real to me.
>
> "You are not alone" is such a powerful message, and in my
experience, the
> world puts tremendous pressure on siblings of children with autism
to be good
> and kind and understanding. The truth is that books are one of the
few places
> available for some siblings to explore what are often quite
complicated
> feelings. One 10-year-old sibling wrote to me recently, "I was so
scared I was
> the only person who felt this way."
>
> Lastly, on the subject of "people-first language," I think part of
the issue
> is that some terms carry historical baggage with them. "Autistic"
carries a
> hard history with it that "has autism" does not.
>
> Admittedly, "people first" terms get clunky sometimes. You should
have seen
> my editor and I trying to get the jacket flap on RULES to work
without using
> two "withs.". . ."with her brother with autism." It's very
imperfect, but I
> do think a desire to move forward and leave history behind is at the
root of
> many families' preference for the newer terms.
>
> My very best wishes to you all,
> Cindy
>
> cindy at cynthialord.com
> Cynthia Lord, RULES
> _______________________________________________
> CCBC-Net mailing list
> CCBC-Net at ccbc.education.wisc.edu
> Visit this link to read archives or to unsubscribe...
> http://ccbc.education.wisc.edu/mailman/listinfo/ccbc-net
------------------------------
_______________________________________________ CCBC-Net mailing list CCBC-Net at ccbc.education.wisc.edu Visit this link to read archives or to unsubscribe... http://ccbc.education.wisc.edu/mailman/listinfo/ccbc-net
End of CCBC-Net Digest, Vol 15, Issue 15
****************************************
_______________________________________________ CCBC-Net mailing list CCBC-Net at ccbc.education.wisc.edu Visit this link to read archives or to unsubscribe... http://ccbc.education.wisc.edu/mailman/listinfo/ccbc-net
Received on Tue 17 Oct 2006 12:32:10 PM CDT
