RE: Fw: Should severely disabled children be kept small?/Sara

[Guest guest]

Hi Sara,

Small wouldn't have saved this woman from being raped. Why didn't they call

the police and the office of advocacy and protection? Zeb is 192 lbs an 5'2 " , he

walks or he doesn't, his choice.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

sara cohen wrote:

I believe that this is a legitimate option for discussion. Being a

nurse

who spent over 20 of my 30 years in nursing caring for medically fragile,

permanently disabled total care children, I believe that there are many

pro's for this to be one of a number of treatment options.

Do no harm is the Hippocratic Oath. So far, no harm has been shown.

There are ethical, moral talking points.

I have a friend right now coping with a 25 yo daughter, in a day program for

medically fragile, infant functioning level. She needs to be bottle fed or

tube fed. ann is now pregnant. The day program " suggests " that someone

in the family home caused this. The mother has called social services.

They want to do an amnio for DNA to establish paternity. Mother wants her

daughter aborted.

BTW - ann weighs 125 lbs and is 5'6 " . There is a hydraulic ceiling lift

in the home to help. NO NURSING CARE IS AVAILABLE in her state . That

means mother and sisteer (17yo ) do all the care before and after day

program. Mother works, sister is in h/s.

There is much in life that is unchangeaable. If there is something that

will help improve quality of life, I think we should talk about it.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >, <downsyndrome >,

> " DS_Families " <downsyndrome_families >, " Sue Cully "

>, " &

>Quinter " , " & Steve Neary "

>, " Lynn " , " Jean

>Miley " , " & Mendini "

>, " & Rod Hawkins " ,

> " Jonathon & Debra French " , " &

>Tina DiBiaso " ,

> " Bill & Callahan " , " Carl &

>Angie Yorina " , " Charlene Chapman "

>,

> " Kate & Rob Touzeau " , " Beth "

>, " Ellen & Laubach " ,

> " Sandy & Guy Trenge " , " Trudy & Rich

>Fulmer " , " & Deb " ,

> " Hebert " , " Blair & Jenn "

>, " & Debbie Neiley "

>, " Carol Osenbach " ,

> " Santoro Family " , " Kathy Woomer "

>, " Marilyn & Tom Zapach "

>, " Patti Mertz "

>, " Floryshak "

>Subject: Fw: Should severely disabled children be kept small?

>Date: Thu, 2 Nov 2006 14:36:45 -0500

>

>MessageAnd I received this response....as well.

>

>Liz

> Should severely disabled children be kept small?

>

>

> Dear Parents and Caregivers,

>

> I received this article of interest today through another list. Don't

>shoot the messenger!!

>

> Thanks,

>

> Betsy

>

> Should severely disabled children be kept small?

>

> Reuters

>

> 1 hour, 25 minutes ago

>

>

>

> In a report published in a medical journal this month, two doctors

>describe a 6-year-old girl with profound, irreversible developmental

>disability who was given high doses of estrogen to permanently halt her

>growth so that her parents could continue to care for her at home.

>

> The controversial growth-attenuation treatment, which included

>hysterectomy, was requested by the child's parents and initiated after

>careful consultation and review by an ethics committee.

>

> In their report in the Archives of Pediatrics and Adolescent Medicine,

>Drs. F. Gunther and S. Diekema, both at the University of

>Washington in Seattle, explain the reasoning behind what they hope will

>generate a healthy debate. Gunther is at the Division of Pediatric

>Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

>

> Caring for children with profound developmental disabilities can be

>difficult and demanding, they note. For children with severe combined

>neurologic and cognitive impairment who are unable to move without

>assistance, all the necessities of life -- dressing, bathing, transporting

>-- must be provided by caregivers, usually parents, and these tasks become

>increasing difficult, if not impossible, as the child increases in size.

>

> " Achieving permanent growth attenuation while the child is still young

>and of manageable size would remove one of the major obstacles to family

>care and might extend the time that parents with the ability, resources,

>and inclination to care for their child at home might be able to do so, "

>Gunther and Diekema write.

>

> The parents of the 6-year-old, both of whom were college-educated

>professionals, indicated a strong desire to continue caring for their

>daughter. Despite having the neurologic development no greater than that of

>an infant, the 6-year-old responds to her parents and two healthy siblings

>-- vocalizing and smiling in response to care and affection -- and " clearly

>is an integral, and much loved, member of the family, " the authors note.

>

> After extensive evaluation, the combined opinion of a team of

>specialists is that the child will have no significant neurologic or

>cognitive improvements.

>

> The onset of puberty and continued growth caused concern in the parents

>about how they would care for their daughter long-term, which they clearly

>wanted to do. They were concerned about having to turn over care to

> " strangers " and also about the complications that would arise when the

>child started menstruating.

>

> The child is now a little more than a year into growth-attenuating

>therapy and approaching the end of her growth, Gunther and Diekema report.

> " As of yet, there have been no treatment complications. "

>

> The authors feel that growth arresting therapy can be " both ethical and

>feasible and should be an option available to parents. "

>

> The authors of a commentary applaud Gunther and Diekema for publishing

>this case report, although they believe that attempts to attenuate growth

>are " ill advised. "

>

> Nonetheless, Dr. P. Brosco from the University of Miami and Dr.

>Feudtner from the University of Pennsylvania, Philadelphia, say that

>by beginning the debate, this paper helps to " advance our ethical dialogue

>as we struggle to define our core values in words, laws, and deeds. Only

>with further research and public discussion will we learn whether attempts

>to attenuate growth run with or against our fundamental values in caring

>for children with profound developmental disabilities. "

>

> SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

>

> http://news.yahoo.com/s/nm/20061101/hl_nm/disabled_children_dc_1

>

>

>

> PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN

>PPCRN PPCRN PPCRN PPCRN PPCRN

>

> This post was sent to you For Your Information only through PPCRN's

>POWER Network for family caregivers of adults with developmental

>disabilities. It does not imply endorsement or agreement with the contents.

>Please seek the advice of professionals on issues concerning your needs or

>the needs of your family members.

>

> If you wish to receive these e-mails directly, or if you no longer wish

>to receive these e-mails, please contact us at: info@....

>

> Or you may call us at: 1-. Sue Dolan

>

> Pennsylvania Parents and Caregivers Resource Network and its POWER

>Network

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

>11/1/2006

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

>11/1/2006

>

> ******************* Pennsylvania's Education for All Coalition, Inc. is

>a partnership of parents, educators, related professionals and others who

>believe that children of all backgrounds and abilities should be

>successfully educated together in their neighborhood schools within the

>general education curriculum. We work together to promote education that

>includes all children by providing individual technical assistance,

>advocacy and supports to families, assisting institutions of higher

>education better prepare teachers to effectively teach all children and

>influencing and supporting schools, policymakers, and the community to

>effectively implement inclusive practices and policies. *******************

> Join the growing list of subscribers to our listserv! To subscribe

>yourself or someone else through the World Wide Web (www), point your

>browser to http://listserv.temple.edu/archives/education-for-all.html.

>Select " join or leave the list " . Then follow the directions on the screen.

>*Be sure to send a first e-mail introducing yourself to your fellow

>subscribers!! *******************

>

>******************* Pennsylvania's Education for All Coalition, Inc. is a

>partnership of parents, educators, related professionals and others who

>believe that children of all backgrounds and abilities should be

>successfully educated together in their neighborhood schools within the

>general education curriculum. We work together to promote education that

>includes all children by providing individual technical assistance,

>advocacy and supports to families, assisting institutions of higher

>education better prepare teachers to effectively teach all children and

>influencing and supporting schools, policymakers, and the community to

>effectively implement inclusive practices and policies. *******************

>Join the growing list of subscribers to our listserv! To subscribe yourself

>or someone else through the World Wide Web (www), point your browser to

>http://listserv.temple.edu/archives/education-for-all.html. Select " join or

>leave the list " . Then follow the directions on the screen. *Be sure to send

>a first e-mail introducing yourself to your fellow subscribers!!

>*******************

>

>

>

[Guest guest]

Hi Sara,

Small wouldn't have saved this woman from being raped. Why didn't they call

the police and the office of advocacy and protection? Zeb is 192 lbs an 5'2 " , he

walks or he doesn't, his choice.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

sara cohen wrote:

I believe that this is a legitimate option for discussion. Being a

nurse

who spent over 20 of my 30 years in nursing caring for medically fragile,

permanently disabled total care children, I believe that there are many

pro's for this to be one of a number of treatment options.

Do no harm is the Hippocratic Oath. So far, no harm has been shown.

There are ethical, moral talking points.

I have a friend right now coping with a 25 yo daughter, in a day program for

medically fragile, infant functioning level. She needs to be bottle fed or

tube fed. ann is now pregnant. The day program " suggests " that someone

in the family home caused this. The mother has called social services.

They want to do an amnio for DNA to establish paternity. Mother wants her

daughter aborted.

BTW - ann weighs 125 lbs and is 5'6 " . There is a hydraulic ceiling lift

in the home to help. NO NURSING CARE IS AVAILABLE in her state . That

means mother and sisteer (17yo ) do all the care before and after day

program. Mother works, sister is in h/s.

There is much in life that is unchangeaable. If there is something that

will help improve quality of life, I think we should talk about it.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >, <downsyndrome >,

> " DS_Families " <downsyndrome_families >, " Sue Cully "

>, " &

>Quinter " , " & Steve Neary "

>, " Lynn " , " Jean

>Miley " , " & Mendini "

>, " & Rod Hawkins " ,

> " Jonathon & Debra French " , " &

>Tina DiBiaso " ,

> " Bill & Callahan " , " Carl &

>Angie Yorina " , " Charlene Chapman "

>,

> " Kate & Rob Touzeau " , " Beth "

>, " Ellen & Laubach " ,

> " Sandy & Guy Trenge " , " Trudy & Rich

>Fulmer " , " & Deb " ,

> " Hebert " , " Blair & Jenn "

>, " & Debbie Neiley "

>, " Carol Osenbach " ,

> " Santoro Family " , " Kathy Woomer "

>, " Marilyn & Tom Zapach "

>, " Patti Mertz "

>, " Floryshak "

>Subject: Fw: Should severely disabled children be kept small?

>Date: Thu, 2 Nov 2006 14:36:45 -0500

>

>MessageAnd I received this response....as well.

>

>Liz

> Should severely disabled children be kept small?

>

>

> Dear Parents and Caregivers,

>

> I received this article of interest today through another list. Don't

>shoot the messenger!!

>

> Thanks,

>

> Betsy

>

> Should severely disabled children be kept small?

>

> Reuters

>

> 1 hour, 25 minutes ago

>

>

>

> In a report published in a medical journal this month, two doctors

>describe a 6-year-old girl with profound, irreversible developmental

>disability who was given high doses of estrogen to permanently halt her

>growth so that her parents could continue to care for her at home.

>

> The controversial growth-attenuation treatment, which included

>hysterectomy, was requested by the child's parents and initiated after

>careful consultation and review by an ethics committee.

>

> In their report in the Archives of Pediatrics and Adolescent Medicine,

>Drs. F. Gunther and S. Diekema, both at the University of

>Washington in Seattle, explain the reasoning behind what they hope will

>generate a healthy debate. Gunther is at the Division of Pediatric

>Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

>

> Caring for children with profound developmental disabilities can be

>difficult and demanding, they note. For children with severe combined

>neurologic and cognitive impairment who are unable to move without

>assistance, all the necessities of life -- dressing, bathing, transporting

>-- must be provided by caregivers, usually parents, and these tasks become

>increasing difficult, if not impossible, as the child increases in size.

>

> " Achieving permanent growth attenuation while the child is still young

>and of manageable size would remove one of the major obstacles to family

>care and might extend the time that parents with the ability, resources,

>and inclination to care for their child at home might be able to do so, "

>Gunther and Diekema write.

>

> The parents of the 6-year-old, both of whom were college-educated

>professionals, indicated a strong desire to continue caring for their

>daughter. Despite having the neurologic development no greater than that of

>an infant, the 6-year-old responds to her parents and two healthy siblings

>-- vocalizing and smiling in response to care and affection -- and " clearly

>is an integral, and much loved, member of the family, " the authors note.

>

> After extensive evaluation, the combined opinion of a team of

>specialists is that the child will have no significant neurologic or

>cognitive improvements.

>

> The onset of puberty and continued growth caused concern in the parents

>about how they would care for their daughter long-term, which they clearly

>wanted to do. They were concerned about having to turn over care to

> " strangers " and also about the complications that would arise when the

>child started menstruating.

>

> The child is now a little more than a year into growth-attenuating

>therapy and approaching the end of her growth, Gunther and Diekema report.

> " As of yet, there have been no treatment complications. "

>

> The authors feel that growth arresting therapy can be " both ethical and

>feasible and should be an option available to parents. "

>

> The authors of a commentary applaud Gunther and Diekema for publishing

>this case report, although they believe that attempts to attenuate growth

>are " ill advised. "

>

> Nonetheless, Dr. P. Brosco from the University of Miami and Dr.

>Feudtner from the University of Pennsylvania, Philadelphia, say that

>by beginning the debate, this paper helps to " advance our ethical dialogue

>as we struggle to define our core values in words, laws, and deeds. Only

>with further research and public discussion will we learn whether attempts

>to attenuate growth run with or against our fundamental values in caring

>for children with profound developmental disabilities. "

>

> SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

>

> http://news.yahoo.com/s/nm/20061101/hl_nm/disabled_children_dc_1

>

>

>

> PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN

>PPCRN PPCRN PPCRN PPCRN PPCRN

>

> This post was sent to you For Your Information only through PPCRN's

>POWER Network for family caregivers of adults with developmental

>disabilities. It does not imply endorsement or agreement with the contents.

>Please seek the advice of professionals on issues concerning your needs or

>the needs of your family members.

>

> If you wish to receive these e-mails directly, or if you no longer wish

>to receive these e-mails, please contact us at: info@....

>

> Or you may call us at: 1-. Sue Dolan

>

> Pennsylvania Parents and Caregivers Resource Network and its POWER

>Network

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

>11/1/2006

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

>11/1/2006

>

> ******************* Pennsylvania's Education for All Coalition, Inc. is

>a partnership of parents, educators, related professionals and others who

>believe that children of all backgrounds and abilities should be

>successfully educated together in their neighborhood schools within the

>general education curriculum. We work together to promote education that

>includes all children by providing individual technical assistance,

>advocacy and supports to families, assisting institutions of higher

>education better prepare teachers to effectively teach all children and

>influencing and supporting schools, policymakers, and the community to

>effectively implement inclusive practices and policies. *******************

> Join the growing list of subscribers to our listserv! To subscribe

>yourself or someone else through the World Wide Web (www), point your

>browser to http://listserv.temple.edu/archives/education-for-all.html.

>Select " join or leave the list " . Then follow the directions on the screen.

>*Be sure to send a first e-mail introducing yourself to your fellow

>subscribers!! *******************

>

>******************* Pennsylvania's Education for All Coalition, Inc. is a

>partnership of parents, educators, related professionals and others who

>believe that children of all backgrounds and abilities should be

>successfully educated together in their neighborhood schools within the

>general education curriculum. We work together to promote education that

>includes all children by providing individual technical assistance,

>advocacy and supports to families, assisting institutions of higher

>education better prepare teachers to effectively teach all children and

>influencing and supporting schools, policymakers, and the community to

>effectively implement inclusive practices and policies. *******************

>Join the growing list of subscribers to our listserv! To subscribe yourself

>or someone else through the World Wide Web (www), point your browser to

>http://listserv.temple.edu/archives/education-for-all.html. Select " join or

>leave the list " . Then follow the directions on the screen. *Be sure to send

>a first e-mail introducing yourself to your fellow subscribers!!

>*******************

>

>

>

[Guest guest]

I hope you all don't mind my " jumping " right in.

I have 3 children and my youngest (6) has the dual dx of Down Syndroem

& Autism.....I frequent a few boards, and come here periodcally to

read....

I have to say I am completely flabbergasted at the idea of hormones

keeping our children small....I truly don't know what to say or how to

respond. My daughter is teeny...she is six, but looks more like a 3

year old...and true.....she is " manageable " at this size....I don't do

much " planning/worrying " about the future....I can only focus on a day

at a time....

I'm not saying I think this " idea " is hurtful or terrible...but I am

truly SHOCKED by the concept.....does anyone else feel that way ?

[Guest guest]

However, the treaatment would have prevented the pregnancy. Police were

called but since so much time elapsed, the suggestion to the parents was

that Protective services run the investigation. Meanwhile the baby is due

in about a month.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: RE: Fw: Should severely disabled children be kept

>small?/Sara

>Date: Thu, 2 Nov 2006 20:58:30 -0800 (PST)

>

>Hi Sara,

> Small wouldn't have saved this woman from being raped. Why didn't they

>call the police and the office of advocacy and protection? Zeb is 192 lbs

>an 5'2 " , he walks or he doesn't, his choice.

> Charlyne

> Mom to Zeb 13 DS/OCD/ASD?

>

>

>sara cohen wrote:

> I believe that this is a legitimate option for discussion. Being

>a nurse

>who spent over 20 of my 30 years in nursing caring for medically fragile,

>permanently disabled total care children, I believe that there are many

>pro's for this to be one of a number of treatment options.

>

>Do no harm is the Hippocratic Oath. So far, no harm has been shown.

>

>There are ethical, moral talking points.

>

>I have a friend right now coping with a 25 yo daughter, in a day program

>for

>medically fragile, infant functioning level. She needs to be bottle fed or

>tube fed. ann is now pregnant. The day program " suggests " that someone

>in the family home caused this. The mother has called social services.

>They want to do an amnio for DNA to establish paternity. Mother wants her

>daughter aborted.

>

>BTW - ann weighs 125 lbs and is 5'6 " . There is a hydraulic ceiling lift

>in the home to help. NO NURSING CARE IS AVAILABLE in her state . That

>means mother and sisteer (17yo ) do all the care before and after day

>program. Mother works, sister is in h/s.

>

>There is much in life that is unchangeaable. If there is something that

>will help improve quality of life, I think we should talk about it.

>

>Sara - Choose to make lemonade, not complain about the lemons.

>

> >

> >Reply-To:

> >To: < >, <downsyndrome >,

> > " DS_Families " <downsyndrome_families >, " Sue Cully "

> >, " &

> >Quinter " , " & Steve Neary "

> >, " Lynn " , " Jean

> >Miley " , " & Mendini "

> >, " & Rod Hawkins " ,

> > " Jonathon & Debra French " , " &

> >Tina DiBiaso " ,

> > " Bill & Callahan " , " Carl &

> >Angie Yorina " , " Charlene Chapman "

> >,

> > " Kate & Rob Touzeau " , " Beth "

> >, " Ellen & Laubach " ,

> > " Sandy & Guy Trenge " , " Trudy & Rich

> >Fulmer " , " & Deb " ,

> > " Hebert " , " Blair & Jenn "

> >, " & Debbie Neiley "

> >, " Carol Osenbach " ,

> > " Santoro Family " , " Kathy Woomer "

> >, " Marilyn & Tom Zapach "

> >, " Patti Mertz "

> >, " Floryshak "

> >Subject: Fw: Should severely disabled children be kept small?

> >Date: Thu, 2 Nov 2006 14:36:45 -0500

> >

> >MessageAnd I received this response....as well.

> >

> >Liz

> > Should severely disabled children be kept small?

> >

> >

> > Dear Parents and Caregivers,

> >

> > I received this article of interest today through another list. Don't

> >shoot the messenger!!

> >

> > Thanks,

> >

> > Betsy

> >

> > Should severely disabled children be kept small?

> >

> > Reuters

> >

> > 1 hour, 25 minutes ago

> >

> >

> >

> > In a report published in a medical journal this month, two doctors

> >describe a 6-year-old girl with profound, irreversible developmental

> >disability who was given high doses of estrogen to permanently halt her

> >growth so that her parents could continue to care for her at home.

> >

> > The controversial growth-attenuation treatment, which included

> >hysterectomy, was requested by the child's parents and initiated after

> >careful consultation and review by an ethics committee.

> >

> > In their report in the Archives of Pediatrics and Adolescent Medicine,

> >Drs. F. Gunther and S. Diekema, both at the University of

> >Washington in Seattle, explain the reasoning behind what they hope will

> >generate a healthy debate. Gunther is at the Division of Pediatric

> >Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

> >

> > Caring for children with profound developmental disabilities can be

> >difficult and demanding, they note. For children with severe combined

> >neurologic and cognitive impairment who are unable to move without

> >assistance, all the necessities of life -- dressing, bathing,

>transporting

> >-- must be provided by caregivers, usually parents, and these tasks

>become

> >increasing difficult, if not impossible, as the child increases in size.

> >

> > " Achieving permanent growth attenuation while the child is still young

> >and of manageable size would remove one of the major obstacles to family

> >care and might extend the time that parents with the ability, resources,

> >and inclination to care for their child at home might be able to do so, "

> >Gunther and Diekema write.

> >

> > The parents of the 6-year-old, both of whom were college-educated

> >professionals, indicated a strong desire to continue caring for their

> >daughter. Despite having the neurologic development no greater than that

>of

> >an infant, the 6-year-old responds to her parents and two healthy

>siblings

> >-- vocalizing and smiling in response to care and affection -- and

> " clearly

> >is an integral, and much loved, member of the family, " the authors note.

> >

> > After extensive evaluation, the combined opinion of a team of

> >specialists is that the child will have no significant neurologic or

> >cognitive improvements.

> >

> > The onset of puberty and continued growth caused concern in the parents

> >about how they would care for their daughter long-term, which they

>clearly

> >wanted to do. They were concerned about having to turn over care to

> > " strangers " and also about the complications that would arise when the

> >child started menstruating.

> >

> > The child is now a little more than a year into growth-attenuating

> >therapy and approaching the end of her growth, Gunther and Diekema

>report.

> > " As of yet, there have been no treatment complications. "

> >

> > The authors feel that growth arresting therapy can be " both ethical and

> >feasible and should be an option available to parents. "

> >

> > The authors of a commentary applaud Gunther and Diekema for publishing

> >this case report, although they believe that attempts to attenuate growth

> >are " ill advised. "

> >

> > Nonetheless, Dr. P. Brosco from the University of Miami and Dr.

> >Feudtner from the University of Pennsylvania, Philadelphia, say

>that

> >by beginning the debate, this paper helps to " advance our ethical

>dialogue

> >as we struggle to define our core values in words, laws, and deeds. Only

> >with further research and public discussion will we learn whether

>attempts

> >to attenuate growth run with or against our fundamental values in caring

> >for children with profound developmental disabilities. "

> >

> > SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

> >

> > http://news.yahoo.com/s/nm/20061101/hl_nm/disabled_children_dc_1

> >

> >

> >

> > PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN

> >PPCRN PPCRN PPCRN PPCRN PPCRN

> >

> > This post was sent to you For Your Information only through PPCRN's

> >POWER Network for family caregivers of adults with developmental

> >disabilities. It does not imply endorsement or agreement with the

>contents.

> >Please seek the advice of professionals on issues concerning your needs

>or

> >the needs of your family members.

> >

> > If you wish to receive these e-mails directly, or if you no longer wish

> >to receive these e-mails, please contact us at: info@....

> >

> > Or you may call us at: 1-. Sue Dolan

> >

> > Pennsylvania Parents and Caregivers Resource Network and its POWER

> >Network

> >

> >

> >

> > --

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

> >11/1/2006

> >

> >

> >

> > --

> > No virus found in this outgoing message.

> > Checked by AVG Free Edition.

> > Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date:

> >11/1/2006

> >

> > ******************* Pennsylvania's Education for All Coalition, Inc. is

> >a partnership of parents, educators, related professionals and others who

> >believe that children of all backgrounds and abilities should be

> >successfully educated together in their neighborhood schools within the

> >general education curriculum. We work together to promote education that

> >includes all children by providing individual technical assistance,

> >advocacy and supports to families, assisting institutions of higher

> >education better prepare teachers to effectively teach all children and

> >influencing and supporting schools, policymakers, and the community to

> >effectively implement inclusive practices and policies.

>*******************

> > Join the growing list of subscribers to our listserv! To subscribe

> >yourself or someone else through the World Wide Web (www), point your

> >browser to http://listserv.temple.edu/archives/education-for-all.html.

> >Select " join or leave the list " . Then follow the directions on the

>screen.

> >*Be sure to send a first e-mail introducing yourself to your fellow

> >subscribers!! *******************

> >

> >******************* Pennsylvania's Education for All Coalition, Inc. is a

> >partnership of parents, educators, related professionals and others who

> >believe that children of all backgrounds and abilities should be

> >successfully educated together in their neighborhood schools within the

> >general education curriculum. We work together to promote education that

> >includes all children by providing individual technical assistance,

> >advocacy and supports to families, assisting institutions of higher

> >education better prepare teachers to effectively teach all children and

> >influencing and supporting schools, policymakers, and the community to

> >effectively implement inclusive practices and policies.

>*******************

> >Join the growing list of subscribers to our listserv! To subscribe

>yourself

> >or someone else through the World Wide Web (www), point your browser to

> >http://listserv.temple.edu/archives/education-for-all.html. Select " join

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>send

> >a first e-mail introducing yourself to your fellow subscribers!!

> >*******************

> >

> >

> >

[Guest guest]

Sara - this is a tragic story.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

sara cohen wrote:

However, the treaatment would have prevented the pregnancy. Police

were

called but since so much time elapsed, the suggestion to the parents was

that Protective services run the investigation. Meanwhile the baby is due

in about a month.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: RE: Fw: Should severely disabled children be kept

>small?/Sara

>Date: Thu, 2 Nov 2006 20:58:30 -0800 (PST)

>

>Hi Sara,

> Small wouldn't have saved this woman from being raped. Why didn't they

>call the police and the office of advocacy and protection? Zeb is 192 lbs

>an 5'2 " , he walks or he doesn't, his choice.

> Charlyne

> Mom to Zeb 13 DS/OCD/ASD?

>

>

>sara cohen wrote:

> I believe that this is a legitimate option for discussion. Being

>a nurse

>who spent over 20 of my 30 years in nursing caring for medically fragile,

>permanently disabled total care children, I believe that there are many

>pro's for this to be one of a number of treatment options.

>

>Do no harm is the Hippocratic Oath. So far, no harm has been shown.

>

>There are ethical, moral talking points.

>

>I have a friend right now coping with a 25 yo daughter, in a day program

>for

>medically fragile, infant functioning level. She needs to be bottle fed or

>tube fed. ann is now pregnant. The day program " suggests " that someone

>in the family home caused this. The mother has called social services.

>They want to do an amnio for DNA to establish paternity. Mother wants her

>daughter aborted.

>

>BTW - ann weighs 125 lbs and is 5'6 " . There is a hydraulic ceiling lift

>in the home to help. NO NURSING CARE IS AVAILABLE in her state . That

>means mother and sisteer (17yo ) do all the care before and after day

>program. Mother works, sister is in h/s.

>

>There is much in life that is unchangeaable. If there is something that

>will help improve quality of life, I think we should talk about it.

>

>Sara - Choose to make lemonade, not complain about the lemons.

>

> >

> >Reply-To:

> >To: < >, <downsyndrome >,

> > " DS_Families " <downsyndrome_families >, " Sue Cully "

> >, " &

> >Quinter " , " & Steve Neary "

> >, " Lynn " , " Jean

> >Miley " , " & Mendini "

> >, " & Rod Hawkins " ,

> > " Jonathon & Debra French " , " &

> >Tina DiBiaso " ,

> > " Bill & Callahan " , " Carl &

> >Angie Yorina " , " Charlene Chapman "

> >,

> > " Kate & Rob Touzeau " , " Beth "

> >, " Ellen & Laubach " ,

> > " Sandy & Guy Trenge " , " Trudy & Rich

> >Fulmer " , " & Deb " ,

> > " Hebert " , " Blair & Jenn "

> >, " & Debbie Neiley "

> >, " Carol Osenbach " ,

> > " Santoro Family " , " Kathy Woomer "

> >, " Marilyn & Tom Zapach "

> >, " Patti Mertz "

> >, " Floryshak "

> >Subject: Fw: Should severely disabled children be kept small?

> >Date: Thu, 2 Nov 2006 14:36:45 -0500

> >

> >MessageAnd I received this response....as well.

> >

> >Liz

> > Should severely disabled children be kept small?

> >

> >

> > Dear Parents and Caregivers,

> >

> > I received this article of interest today through another list. Don't

> >shoot the messenger!!

> >

> > Thanks,

> >

> > Betsy

> >

> > Should severely disabled children be kept small?

> >

> > Reuters

> >

> > 1 hour, 25 minutes ago

> >

> >

> >

> > In a report published in a medical journal this month, two doctors

> >describe a 6-year-old girl with profound, irreversible developmental

> >disability who was given high doses of estrogen to permanently halt her

> >growth so that her parents could continue to care for her at home.

> >

> > The controversial growth-attenuation treatment, which included

> >hysterectomy, was requested by the child's parents and initiated after

> >careful consultation and review by an ethics committee.

> >

> > In their report in the Archives of Pediatrics and Adolescent Medicine,

> >Drs. F. Gunther and S. Diekema, both at the University of

> >Washington in Seattle, explain the reasoning behind what they hope will

> >generate a healthy debate. Gunther is at the Division of Pediatric

> >Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

> >

> > Caring for children with profound developmental disabilities can be

> >difficult and demanding, they note. For children with severe combined

> >neurologic and cognitive impairment who are unable to move without

> >assistance, all the necessities of life -- dressing, bathing,

>transporting

> >-- must be provided by caregivers, usually parents, and these tasks

>become

> >increasing difficult, if not impossible, as the child increases in size.

> >

> > " Achieving permanent growth attenuation while the child is still young

> >and of manageable size would remove one of the major obstacles to family

> >care and might extend the time that parents with the ability, resources,

> >and inclination to care for their child at home might be able to do so, "

> >Gunther and Diekema write.

> >

> > The parents of the 6-year-old, both of whom were college-educated

> >professionals, indicated a strong desire to continue caring for their

> >daughter. Despite having the neurologic development no greater than that

>of

> >an infant, the 6-year-old responds to her parents and two healthy

>siblings

> >-- vocalizing and smiling in response to care and affection -- and

> " clearly

> >is an integral, and much loved, member of the family, " the authors note.

> >

> > After extensive evaluation, the combined opinion of a team of

> >specialists is that the child will have no significant neurologic or

> >cognitive improvements.

> >

> > The onset of puberty and continued growth caused concern in the parents

> >about how they would care for their daughter long-term, which they

>clearly

> >wanted to do. They were concerned about having to turn over care to

> > " strangers " and also about the complications that would arise when the

> >child started menstruating.

> >

> > The child is now a little more than a year into growth-attenuating

> >therapy and approaching the end of her growth, Gunther and Diekema

>report.

> > " As of yet, there have been no treatment complications. "

> >

> > The authors feel that growth arresting therapy can be " both ethical and

> >feasible and should be an option available to parents. "

> >

> > The authors of a commentary applaud Gunther and Diekema for publishing

> >this case report, although they believe that attempts to attenuate growth

> >are " ill advised. "

> >

> > Nonetheless, Dr. P. Brosco from the University of Miami and Dr.

> >Feudtner from the University of Pennsylvania, Philadelphia, say

>that

> >by beginning the debate, this paper helps to " advance our ethical

>dialogue

> >as we struggle to define our core values in words, laws, and deeds. Only

> >with further research and public discussion will we learn whether

>attempts

> >to attenuate growth run with or against our fundamental values in caring

> >for children with profound developmental disabilities. "

> >

> > SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

> >

> > http://news.yahoo.com/s/nm/20061101/hl_nm/disabled_children_dc_1

> >

> >

> >

> > PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN PPCRN

> >PPCRN PPCRN PPCRN PPCRN PPCRN

> >

> > This post was sent to you For Your Information only through PPCRN's

> >POWER Network for family caregivers of adults with developmental

> >disabilities. It does not imply endorsement or agreement with the

>contents.

> >Please seek the advice of professionals on issues concerning your needs

>or

> >the needs of your family members.

> >

> > If you wish to receive these e-mails directly, or if you no longer wish

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> >

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> > Pennsylvania Parents and Caregivers Resource Network and its POWER

> >Network

> >

> >

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> > ******************* Pennsylvania's Education for All Coalition, Inc. is

> >a partnership of parents, educators, related professionals and others who

> >believe that children of all backgrounds and abilities should be

> >successfully educated together in their neighborhood schools within the

> >general education curriculum. We work together to promote education that

> >includes all children by providing individual technical assistance,

> >advocacy and supports to families, assisting institutions of higher

> >education better prepare teachers to effectively teach all children and

> >influencing and supporting schools, policymakers, and the community to

> >effectively implement inclusive practices and policies.

>*******************

> > Join the growing list of subscribers to our listserv! To subscribe

> >yourself or someone else through the World Wide Web (www), point your

> >browser to http://listserv.temple.edu/archives/education-for-all.html.

> >Select " join or leave the list " . Then follow the directions on the

>screen.

> >*Be sure to send a first e-mail introducing yourself to your fellow

> >subscribers!! *******************

> >

> >******************* Pennsylvania's Education for All Coalition, Inc. is a

> >partnership of parents, educators, related professionals and others who

> >believe that children of all backgrounds and abilities should be

> >successfully educated together in their neighborhood schools within the

> >general education curriculum. We work together to promote education that

> >includes all children by providing individual technical assistance,

> >advocacy and supports to families, assisting institutions of higher

> >education better prepare teachers to effectively teach all children and

> >influencing and supporting schools, policymakers, and the community to

> >effectively implement inclusive practices and policies.

>*******************

> >Join the growing list of subscribers to our listserv! To subscribe

>yourself

> >or someone else through the World Wide Web (www), point your browser to

> >http://listserv.temple.edu/archives/education-for-all.html. Select " join

>or

> >leave the list " . Then follow the directions on the screen. *Be sure to

>send

> >a first e-mail introducing yourself to your fellow subscribers!!

> >*******************

> >

> >

> >