List Members:
My name is Lori Hickman, I am a speech-language pathologist. I attended an
Angelman Syndrome Conference in Seattle several years ago. I had a little
angel on my case load and was eager to find out all I could about treatment
approaches, particularly in the area of communication. I anticipated that I
would learn many good, clinical things. What I learned was beyond my
expectations, and not simply in terms of clinical information. Many parents
attended this conference with their angels of all ages. I was overwhelmed by
the amazing wealth of knowledge and understanding of this disorder that I
gained by visiting with these angel families. Before I left, I was invited
to join the Angelman Syndrome listserv, an email discussion group that is
comprised[1]e of those who live with and love angels.
I joined this listserv, and though I was mostly a lurker (a person who reads
the posts to the list, but does not post herself), I quickly became
convinced that, as a clinician, this was the most powerful and complete
source of information I could have about Angelman syndrome. I then joined
other listservs for special needs families, in order to tap into this
resource for other areas of special need. At the height of my listserv
adventures, I was getting more than 2,000 emails a day. This was great. I
learned so much, felt so truly connected to the font of information that the
families of children with special needs offered.
I wanted to find a way to tap into this resource that parents provided. I
knew from past experience that communication between families of children
with special needs and those in their support network (professionals,
extended family, friends, the community) was not always positive. I believed
that this resource that parents of children with special needs offered could
allow those of us in their support network to meet their needs in more
meaningful and successful ways. I developed an interview format to address
the many areas of life with a child with special needs that parents could sh
are, so that readers could get a sense of every aspect of the lives of these
families. Over the next two years, I collected responses from hundreds of
parents and caregivers of children with special needs. I found them to be
the true experts.
So little of what we can clinically offer to families has real relevance to
their needs. I believe that this is because we do not understand the reality
of parenting a child with special needs and the impact this has on the
family. I also believe that our "professional demeanor" can result in
miscommunication when we meet with families. Parents can only approach this
exchange from a very personal, emotional perspective, yet we enter this
exchange from a clinical perspective, no matter how empathetic we are.
Unless we learn to "listen with our hearts" to these families, we will never
truly hear what they are wanting and needing from us, as professionals.
I have dedicated Living In My Skin: The Insider's View of Life With a
Special Needs Child to the families of children with special needs from whom
I have learned so much. It expresses what I have learned about them and,
more importantly, from them. The dedication appears below:
Someone I love relies on me in ways you will never understand. Someone I
love endures pain and challenges that break my heart and renew my spirit at
the same time. Someone I love is unable to advocate for themselves for
things that most of us take for granted. Someone I love will never have the
opportunities that every child should have. Someone I love will need
unconditional love and support after I am gone-this frightens me to the
core. Someone I love encounters pity, stereotyping responses, and prejudice
at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power
and input in areas that should be mine alone to meet. Someone I love will
continue to look to me for everything in life long after other children are
able to assume a place as part of the world. Someone I love has needs that
require more time and energy than I have to give. Someone I love has needs
that mean I am not able to meet basic needs of my own. Someone I love has
needs that have become the driving force behind major decisions my family
makes. Someone I love has changed me in ways I will never be able to
describe. Someone I love has taught me about love and about the really
important things in life. . . .
Living In My Skin: The Insider's View of Life With a Special Needs Child.
Copyright (c) 2000 by Communication Skill Builders, a Harcourt Health
Sciences Company. Reproduced by permission of the publisher. All rights
reserved. Author: Lori Hickman.
I attended an Angelman Syndrome Conference in Seattle several years ago. I
had a little angel on my case load and was eager to find out all I could
about treatment approaches, particularly in the area of communication. I
anticipated that I would learn many good, clinical things. What I learned
was beyond my expectations, and not simply in terms of clinical information.
Many parents attended this conference with their angels of all ages. I was
overwhelmed by the amazing wealth of knowledge and understanding of this
disorder that I gained by visiting with these angel families. Before I left,
I was invited to join the Angelman Syndrome listserv, an email discussion
group that is comprised[1]e of those who live with and love angels.
I joined this listserv, and though I was mostly a lurker (a person who reads
the posts to the list, but does not post herself), I quickly became
convinced that, as a clinician, this was the most powerful and complete
source of information I could have about Angelman syndrome. I then joined
other listservs for special needs families, in order to tap into this
resource for other areas of special need. At the height of my listserv
adventures, I was getting more than 2,000 emails a day. This was great. I
learned so much, felt so truly connected to the font of information that the
families of children with special needs offered.
I wanted to find a way to tap into this resource that parents provided. I
knew from past experience that communication between families of children
with special needs and those in their support network (professionals,
extended family, friends, the community) was not always positive. I believed
that this resource that parents of children with special needs offered could
allow those of us in their support network to meet their needs in more
meaningful and successful ways. I developed an interview format to address
the many areas of life with a child with special needs that parents could
share, so that readers could get a sense of every aspect of the lives of
these families. Over the next two years, I collected responses from hundreds
of parents and caregivers of children with special needs. I found them to be
the true experts.
So little of what we can clinically offer to families has real relevance to
their needs. I believe that this is because we do not understand the reality
of parenting a child with special needs and the impact this has on the
family. I also believe that our "professional demeanor" can result in
miscommunication when we meet with families. Parents can only approach this
exchange from a very personal, emotional perspective, yet we enter this
exchange from a clinical perspective, no matter how empathetic we are.
Unless we learn to "listen with our hearts" to these families, we will never
truly hear what they are wanting and needing from us, as professionals.
I have dedicated Living In My Skin: The Insider's View of Life With a
Special Needs Child to the families of children with special needs from whom
I have learned so much. It expresses what I have learned about them and,
more importantly, from them. The dedication appears below:
Someone I love relies on me in ways you will never understand. Someone I
love endures pain and challenges that break my heart and renew my spirit at
the same time. Someone I love is unable to advocate for themselves for
things that most of us take for granted. Someone I love will never have the
opportunities that every child should have. Someone I love will need
unconditional love and support after I am gone-this frightens me to the
core. Someone I love encounters pity, stereotyping responses, and prejudice
at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power
and input in areas that should be mine alone to meet. Someone I love will
continue to look to me for everything in life long after other children are
able to assume a place as part of the world. Someone I love has needs that
require more time and energy than I have to give. Someone I love has needs
that mean I am not able to meet basic needs of my own. Someone I love has
needs that have become the driving force behind major decisions my family
makes. Someone I love has changed me in ways I will never be able to
describe. Someone I love has taught me about love and about the really
important things in life. . . .
Living In My Skin: The Insider's View of Life With a Special Needs Child.
Copyright (c) 2000 by Communication Skill Builders, a Harcourt Health
Sciences Company. Reproduced by permission of the publisher. All rights
reserved. Author: Lori Hickman.
I attended an Angelman Syndrome Conference in Seattle several years ago. I
had a little angel on my case load and was eager to find out all I could
about treatment approaches, particularly in the area of communication. I
anticipated that I would learn many good, clinical things. What I learned
was beyond my expectations, and not simply in terms of clinical information.
Many parents attended this conference with their angels of all ages. I was
overwhelmed by the amazing wealth of knowledge and understanding of this
disorder that I gained by visiting with these angel families. Before I left,
I was invited to join the Angelman Syndrome listserv, an email discussion
group that is comprised[1]e of those who live with and love angels.
I joined this listserv, and though I was mostly a lurker (a person who reads
the posts to the list, but does not post herself), I quickly became
convinced that, as a clinician, this was the most powerful and complete
source of information I could have about Angelman syndrome. I then joined
other listservs for special needs families, in order to tap into this
resource for other areas of special need. At the height of my listserv
adventures, I was getting more than 2,000 emails a day. This was great. I
learned so much, felt so truly connected to the font of information that the
families of children with special needs offered.
I wanted to find a way to tap into this resource that parents provided. I
knew from past experience that communication between families of children
with special needs and those in their support network (professionals,
extended family, friends, the community) was not always positive. I believed
that this resource that parents of children with special needs offered could
allow those of us in their support network to meet their needs in more
meaningful and successful ways. I developed an interview format to address
the many areas of life with a child with special needs that parents could
share, so that readers could get a sense of every aspect of the lives of
these families. Over the next two years, I collected responses from hundreds
of parents and caregivers of children with special needs. I found them to be
the true experts.
So little of what we can clinically offer to families has real relevance to
their needs. I believe that this is because we do not understand the reality
of parenting a child with special needs and the impact this has on the
family. I also believe that our "professional demeanor" can result in
miscommunication when we meet with families. Parents can only approach this
exchange from a very personal, emotional perspective, yet we enter this
exchange from a clinical perspective, no matter how empathetic we are.
Unless we learn to "listen with our hearts" to these families, we will never
truly hear what they are wanting and needing from us, as professionals.
I have dedicated Living In My Skin: The Insider's View of Life With a
Special Needs Child to the families of children with special needs from whom
I have learned so much. It expresses what I have learned about them and,
more importantly, from them. The dedication appears below:
Someone I love relies on me in ways you will never understand. Someone I
love endures pain and challenges that break my heart and renew my spirit at
the same time. Someone I love is unable to advocate for themselves for
things that most of us take for granted. Someone I love will never have the
opportunities that every child should have. Someone I love will need
unconditional love and support after I am gone-this frightens me to the
core. Someone I love encounters pity, stereotyping responses, and prejudice
at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power
and input in areas that should be mine alone to meet. Someone I love will
continue to look to me for everything in life long after other children are
able to assume a place as part of the world. Someone I love has needs that
require more time and energy than I have to give. Someone I love has needs
that mean I am not able to meet basic needs of my own. Someone I love has
needs that have become the driving force behind major decisions my family
makes. Someone I love has changed me in ways I will never be able to
describe. Someone I love has taught me about love and about the really
important things in life. . . .
Living In My Skin: The Insider's View of Life With a Special Needs Child.
Copyright (c) 2000 by Communication Skill Builders, a Harcourt Health
Sciences Company. Reproduced by permission of the publisher. All rights
reserved. Author: Lori Hickman.
For more information:
Communication Skill Builders/The Psychological Corporation 1-800 211-8378
ISBN# 076-1664-971
http://www.tpcweb.com/store/nf/csb12nf.html
or contact me (Lori Hickman) [log in to unmask]
Best wishes,
Lori Hickman
|
