scouts-l Mail Archive for May of 2000: Special Needs
Wed May 03 2000 - 13:39:12 CDT
So many wrote that they were their responsible for special needs programs for
their district that when I received this from the Fragile X list today I
immediately thought there would be those in the Scouts-L community it would
benefit and you should all know. I am not an advertiser, don't have any
connection to the company, and I'm sure that the woman's three years of work
does not include my personal situation of the last month, so I look at this
as providing a resource some can use.
>>>ALL FWD FROM HERE TO END
For the past three years, I have been involved in a project related to parent
advocacy. Parents from [The Fragile-X] list participated in this project, the
development of a resource for parents of children with special needs.
I am pleased to announce that this resource has now been published.
"Living in My Skin: The Insider's View of Life with a Special Needs Child" is
scheduled to be released in May. Printed below is the dedication I wrote for
the book. It captures my thoughts during the final phases of the book's
production, and is based on what I learned from those who participated in
this project and taught me so much.
"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 from 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....
This book is lovingly dedicated to the parents of children with special
>From "Living in My Skin: The Insider's View of Life with a Special Needs
Child". Copyright 2000 by Communication Skill Builders, a Harcourt Health
Sciences Company. Reproduced by permission of the publisher. All rights
I believe that "Living in My Skin" will be an important resource ... to
recommend to professionals, extended family, friends, and members of your
community. But I am also convinced that it will be as important a resource
for you, because it provides a source of the validation, strength,
information and affirmation that comes from shared experience. I think it was
Thomas Jefferson who said "Who then can so softly bind up the wound of
another as he who has felt the same wound himself?"
Many of the parents who participated in this project requested information
about how to order "Living in My Skin" once it was published. Here is the
Title: "Living in My Skin: The Insider's View of Life with a Special Needs
Publisher: Communication Skill Builders, a Harcourt Health Sciences Company.
(Phone=23 1-800 211-8378; WEB: www.tpcweb.com).
Price: $24.45 after 8/31/00; Early Bird price $24.39 for orders through
For those who participated in this project, thank you again. I learned so
much from you.
Lori Hickman, M.S., CCC
P.O. Box 601
Langley, WA 98260