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                                           Joyce Ford
Abstract: We must try to develop a collective understanding of the issues of this
symposium, endeavoring to view today's problems from the many different
perspectives represented here. We must plan together to achieve the best
possible educationCthe best possible lifeCfor those who are deaf-blind.


       Last November the planning                        in the educational                      system   for
committee of this symposium met to                       children.
identify   the   topical   areas    of
presentation, to identify who the                        My nine-year-old son is deaf-blind
candidates for such presentations                        and I am very involved in his
might be, and to define what would                       education.    However, I am not a
take place today and tomorrow. I                         professional educator, nor am I deaf-
must tell you that I was in very good                    blind. My perspective is but one
company to accomplish that task.                         aspect of the entire picture, and so it
                                                         is important that the membership of
Over the past year, you have received                    the symposium reflects other aspects
some correspondence which outlines                       as well.
the scope of our responsibility and so
I will not dwell on our mission for                      Following the planning committee
these next two days. Still, I think it                   meeting last year, I had some
might be helpful if we re-examine the                    concerns which I expressed in a
overall objectives and the direction                     letter   to     John Reiman,    the
we should consider taking in order to                    symposium director. Since I never
accomplish those objectives.                             seem to be short of words, you have
                                                         probably guessed that it was a
This Request for Proposal (RFP)                          lengthy letter!
called for us, collectively, to identify
10 critical issues as they relate to                     What       resulted      from    that
education of children who are deaf-                      correspondence is what you see
blind. It called for presentations and                   before you now, a long-letter-writing
reactions on these issues and for the                    parent giving the keynote address! I
final proceedings of this symposium                      can only surmise that this resulted
to be assembled and disseminated.                        because the concerns I expressed
This is certainly not the largest                        have some level of validity and that
project to have ever been funded, nor                    the manner in which I presented
is it the one that has been given the                    them left some sense of optimism for
greatest amount of time. Still, in my                    this symposium to accomplish its
estimation, it is an extremely unique                    task in the best possible way.
opportunity to effect positive change

                Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

I want to share some of what I wrote                       of a list of three things. Create a
to John that day and to discuss some                       mental picture of your list and the
of my reasons for those concerns. I                        numbers 1, 2, and 3. Now, I want
must preface this discussion with a                        you to list three positive outcomes
touch of history about myself. Since                       that would occur if you were to drop
Riley's birth, I have been labeled with                    dead at this very moment.
an abundance of adjectives. I have
been        called      "unresponsive,"                    I have to tell you that when I first did
"overprotective," "impractical," and                       this exercise, I was so tremendously
"unreasonable." I have, of late, been                      bright that I was the first one to
able to add "idealistic," "unrealistic,"                   finish    and     raised   my      hand
and "too theoretical" to that list.                        immediately! My list said:
Now, it may very well be that I am all
                                                           1. I can sleep in every day.
those things. However, I do hope
that you will at least agree to hear                       2. I don't have to watch what I eat.
my concerns before you cast your
decision or add another adjective to                       3. This pretty much solves the worry
my ever-growing list!                                      about growing old.
In my letter to John, I first discussed                    Unfortunately, those were not the
my concern regarding the difference                        right answers! The exercise went on
between problems and issues. At                            to say that these outcomes must be
times, I think we get trapped in our                       for others who are close to you. List
own thought processes, and because                         three positive outcomes for others if
of that, we don't challenge ourselves                      you were to die at this very moment.
to think in new ways, to be as
creative as we might be, or to                             If you're having difficulty with this
conceptualize possibilities beyond                         exercise, it is most likely because we
those ideas that we know to be                             have not learned how to think in
sound and true. What I will propose                        these terms. We are not accustomed
to you in this presentation is that we                     to taking what we believe to be an
attempt to release ourselves from the                      impeding negative and looking
confines of "typical" thinkingCto step                     beyond that for positive outcomes.
away from our stimulus-response                            We do not traditionally use our
patterns of thought, and to begin to                       brains in that manner, and so we
formulate our ideas collectively in                        seldom apply that kind of thinking in
terms of outcomes.                                         our day-to-day lives.

I'd like to suggest that we do an                          When I did the exercise again, I was
exercise together that captures the                        able to come up with two valid
feeling of what I'm talking about                          outcomes in my list of three. The
when I speak of outcomes and the                           first two were, of course, very
thought process necessary to reach                         personal. The third one was that the
those. It's a simple exercise that you                     dog would be allowed to sleep on the
can do in your head. Think in terms                        bed, something which he has always

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

wanted to do! Perhaps I'm not as                           services. All too often, these systems
bright as I first thought I was, but I                     translate into being entitled to
figured two out of three wasn't so bad                     everything and getting nothing, or
after all!                                                 being entitled to nothing and
                                                           receiving nothing. Now I know that
I chose to use this exercise because it                    this doesn't come as a news flash to
reflects two areas of my life: (a) The                     most of you here. Additionally, I'm
"world at large" generally has a                           not here to throw water on the
negative     view   of    our    family                    remarkable       strides   that   have
circumstances, and (b) it is this kind                     occurred in response to this
of negativity that we are constantly                       disability. What I will say, however,
attempting to overcome in our day-                         is that the list of problems is
to-day lives. For me, survival is a                        incredibly     long.        The    very
matter of having the ability to think                      identification of multiple problems is
differently.                                               our most solid indicator that positive
                                                           change is needed.
Applying that kind of thinking to the
task before us, it is important to                               I want to share a paragraph
recognize that there is a difference                       from my letter to John about this
between problems and issues. It is                         concept and how I saw my role on
equally important to recognize                             the committee:
problems in order to identify issues.
Our work during these next two days                        As a parent, my hope was to have the
will identify both problems and                            opportunity to directly influence the
issues around education for children                       future direction of the Department of
and result in recommendations for                          Education in its provision of services
constructive changes within the                            to my son, other children like my
educational system. I hope we will                         son, and the families who live with
keep in mind that the outcomes we                          children who are deaf-blind. That is
seek affect lives well beyond the                          how I defined my "role" as parent
educational years.      People, both                       representative. I had hoped that the
children and adults, are unique                            other individuals would also bring to
individuals, and we cannot and                             the meeting their own "role" in their
should not make general or blanket                         representation, their own desires to
statements about them.          It is                      influence     the    Department      of
important     to   remember       that                     Education, and that the result of
individuals influence system change                        these collective roles and influences
and that systems need to respond to                        would be the identification of critical
those individuals.                                         educational     issues   that   stand
                                                           between children's lives as children
For those reasons, I was concerned                         and their lives as adults functioning
that once again people who are deaf-                       within our society.       The critical
blind would be divided into the two                        issues then, in my estimation, are
service systems that currently exist:                      not what we know, but what we do
educational services and adult                             not know. The critical issues are not

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

what we need to do better, but what                        perceives it in a different way and
we're not doing at all. The critical                       takes from it a different lesson.
issues do not divide a person into
systems that already exist, but look                       Each person obviously felt competent
at systems that don't exist. This was                      enough to describe the animal. No
my expectation for the group.                              doubt, they would modify their views
                                                           if they were to share their findings
I can tell you that my hopes for this                      with the others. This is the idea that
group are no less than my hopes                            I ask you employ: to view the issues
were for the planning committee.                           not merely from one perspective, but
Each of you has a "role" to play in                        as shared perspectives.           Our
these proceedings. Each of you also                        perspectives, as partners, will allow
has influences to bring. I will ask                        us to achieve our goals. Adhering to
you to set aside your agendas,                             disjointed views can only defeat our
philosophies, and differences and                          purpose.
open your minds to a new way of
thinkingCthinking that addresses                           I am fortunate to have been chosen
people in the context of their whole                       to deliver this message. For too long,
lives.    I am not asking you to                           parents and families have had little
compromise your values.         I am                       voice in the way services are
asking you to bring your values into                       delivered to their children. Parents
partnership with the others in this                        have an important perspective to
room to effect constructive system                         bring. I often worry that someone
change for children who are deaf-                          might generalize my statements or
blind, for the families who live with                      opinions to all parents and families.
children who are deaf-blind, and for                       That, of course, is not my intention.
the professionals who deliver services                     Still, it is important for parents to
to individuals and families.                               have a voice.        If I am able to
                                                           accomplish anything, I hope that it
I remember hearing a story of three                        will be to give families the voice they
people who are blind-folded and                            so deserve and that this voice will
asked to examine an elephant. The                          affect the services that touch the lives
first person touches only the                              of their sons and daughters.
elephant's     trunk     and      then
confidently describes the beast as a                       As I prepared this presentation, I
great snakelike creature, similar to a                     realized that our life with Riley
python. The second person feels only                       mirrors the topical areas which were
the ears and announces that it is a                        selected through the Symposium
bird that can soar to great heights.                       Planning Committee.        Because of
The third individual examines only                         that, I believe that my problems and
the elephant's fringe-tipped tail and                      issues as a parent are the very same
reports of an animal that is strangely                     problems      and    issues   of  the
similar to a bottle brush. So it is                        symposium.         It is immensely
with any experience. Each individual                       important to me that this symposium
                                                           will successfully identify those

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

issues. If a symposium such as this                        at the very moment we become
occurs once every decade, then the                         comfortable with what we have
next one will occur when Riley is 19.                      acquired.     As parents, we very
Riley will have nearly completed his                       quickly    learn    that   we    must
years in the educational system by                         constantly be uncomfortable and on
then. You can understand then, that                        guard if our children are to receive
this    is     a    once-in-a-lifetime                     the services they require and deserve.
opportunity for me.                                        When families are placed under this
                                                           constant stress, every problem
Let me share some of my life with                          becomes an issue. Likewise, every
you. Those of you who attended the                         issue drives a family further from the
Hilton/Perkins National Conference                         services they are most in need of. I
heard some of the trials of my life                        know this to be true. I live it every
following my son's premature birth                         day.
as well as our encounters with early
intervention, preschool, and early                         Having the ability to think in different
school    life.     The    20-minute                       terms has given me the opportunity
presentation only touched on some of                       to build partnerships among the
the events our family has survived.                        systems. These partnerships allow
                                                           me safely to share my discomfort, to
At one time, Riley was not identified                      think creatively, and to resolve
as being deaf-blind. What this meant                       problems before they become issues.
to our family and to Riley was that                        Certainly these partnerships offer me
we were not able to know what to do,                       a great deal of personal support. A
how to do it, or why we needed to do                       major outcome of that process is the
it. We were completely alone, not for                      kind of direct services that Riley
a few weeks, and not for a couple of                       receives. The shared thinking among
months. We were alone for three                            those partnerships has proven itself
years. Because we were alone, our                          time and again to be an essential
decisions were not always wise ones.                       ingredient in Riley's education, his
We often accepted the decisions of                         life at home, and, most likely, will
others who we believed were more                           affect his life as an adult within the
knowledgeable and competent than                           community.
we. The sad reality was that most
often they knew less than we did,                          I used an example in my letter to
and Riley was the one to pay the                           John which directly relates to this
price.    A natural result of those                        topic. A few years ago my son had to
experiences was our diminished trust                       have his eyes surgically removed.
in the professionals who were our                          This resulted from an unwise choice
only allies at that time.                                  we made during Riley's infancy based
                                                           upon the advice of a trusted
Rebuilding that trust has been a                           physician.     We did not expect
most difficult aspect of life for us,                      repercussions from that very early
and it is for other parents as well.                       decision years later in Riley's life, and
Too often our children have suffered                       I had a great deal of difficulty

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

watching my little boy pay the price                       What in this example is the critical
for that choice.                                           issue?    Is it the lack of respite
                                                           providers? Is it the lack of informed
Riley has always had trouble with his                      medical personnel?       Is it their
sleep patterns and surgery only adds                       inability to share knowledge with
to that difficulty. It was no different                    parents? Is it a lack of reasonable
following these surgeries. What was                        placement alternatives?
different however, was that no matter
what we tried or whose advice we                           I don't think it is any of those,
followed, we were unsuccessful in                          although they are all valid problems
switching his days and nights back                         and, without question, things we
around.        Weeks passed, then                          need to improve. The critical issue
months, then a year, and more. He                          was that, as a family, we did not have
was frequently ill and missing school.                     access to supportCthe support we
My husband and I were taking turns                         needed to maintain Riley in his home
trying to care for him. We were at                         under extreme circumstances. There
the point of exhaustion. Every illness                     was no support system in place for
set us back further on the time                            us.
                                                           Once I recognized the issue I was
I was beginning to travel then, and                        able to join others to begin to
my advocacy efforts would take me                          advocate for change. Personal care
away from home. In some respects                           services evolved in our state shortly
that was good. Often it was the only                       thereafter.         Should      similar
time I had the opportunity to sleep                        circumstances occur again, our
through the night. In other respects                       family will have access to the support
it was not so good. My husband was                         we need. Fortunately, many other
left trying to juggle his job, our                         families will be able to access that
daughter, and, of course, all of the                       support as well.
difficulties    that    Riley     was
experiencing. Needless to say, our                         What is important to me is knowing
family relationships were jeopardized.                     that this change occurred because
                                                           people were willing to think beyond
Eventually, the difficulties became so                     what was. We came together to look
great I could not sleep, at home or                        at what could be, and the outcome of
away. The only logical solution that                       that is what is. This is our task: to
seemed to remain was to begin to                           venture beyond the limits of today.
look seriously at placement for Riley
outside our homeChis homeCand                              Some things we know. We know that
that thought went against every                            you can never go back to what was.
value I had for him and his future.                        My mother taught me that lesson.
Still, I was watching my family,                           She gave me a suitcase for
myself,   and     our     relationships                    graduation and said, "Get out and
collapse because of the situation we                       don't come back!" She didn't really
were in.                                                   say that! But she did teach me that

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

lesson. She taught me that life is a                       became a reality last March when
series of changes and, as reluctant as                     Riley's placement changed from a
we human beings are to accept it,                          self-contained classroom to a regular
change is a natural outcome of living.                     third grade classroom. This is not
                                                           without problems; there have been
Freeing our minds to dream creates                         many struggles. There have been
the opportunity to change, to become                       many obstacles, and I expect that
better people, to live more fulfilled                      there will be many more. Complex
lives.  We want those things for                           issues have arisen that concern
ourselves and for the people we care                       attitudes, roles, and directions.
about. As a parent, I want those                           Those too will be addressed. They
same things for my son.                                    must be addressed. We cannot go
                                                           back to what was. My commitment
I hope that as we proceed through
                                                           to Riley will not allow me to accept
this symposium you will keep your
                                                           less than he deserves.
dreams for children who are deaf-
blind in mind. We have the ability to                      My dream has many components for
focus our thoughts on problems. Or                         Riley: I want him to have choices,
we can focus on outcomes. It is our                        communication,          independence,
desires for the future that enable us                      mobility, and relationships. It has
to identify the barriers we need to                        components for others as well: well-
overcome.                                                  prepared     school    staff,   smooth
                                                           transitions, effective teamwork, and
The     Department    of    Education
                                                           commitment. It has components for
identified two problems in its RFP for
                                                           our family: Riley's independence as
this symposium.       One was that
                                                           an adult, his self-esteem, and our
children who are deaf-blind are not
                                                           ability    to      have       connected
receiving services that would be
                                                           relationships rather than dependent
considered "best practice." The other
                                                           ones.     My dream embraces the
is that students who are deaf-blind
                                                           changes that are natural to life, and
are not being integrated with their
                                                           are important to each of us. My
nondisabled peers.         I cannot
                                                           dream reflects our ideals.
emphasize enough the importance of
both of these concerns. I hope that                        What are your ideals? What are your
we will keep them central in our                           dreams      for    these    children's
dreams      throughout    our    time                      educational futures and their lives
together.                                                  beyond that? What do you say and
                                                           do each day that supports your
A year ago, I wrote about a dream for
                                                           ideals? In times of discouragement
my son. Part of that dream was that
                                                           have you ever found yourself saying,
he would be included in the lives of
                                                           "If only they would look. If only they
other children, that these children
                                                           would listen.    If only they would
would learn to recognize his
                                                           respond." Our challenge is that we
strengths and in turn help to
                                                           cannot continue to preach our ideals
enhance his abilities. That dream
                                                           unless we are willing to respond.

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                           KEYNOTE

And because we have been asked to
come together to share our values
and ideals, you and I, here and now,
are part of the system. We are at one
with those who work within the

As     I   mentioned     earlier,  this
symposium is a once-in-a-lifetime
opportunity for my son and for me to
be involved in helping to create the
educational framework for the next
decade. In a sense, with changes in
careers, new directions, and new
ambitions, it may be a once-in-a-
lifetime opportunity for you as well.

The astronomer anticipates the
arrival of the comet. He will have
only one chance to view it in his
lifetime.       He   prepares    his
instruments and waits impatiently.
He is anxious to take advantage of
that rare event. How discouraged he
becomes when the skies are filled
with clouds and his chance is stolen
by circumstances beyond his control.

Yes, I am idealistic.     Unrealistic?
Optimistic. Our task is not a small
one. Open your minds and clear the
skies. Look around you. We have
become they for the next decade.
How will we be referred to?

I wish you all success.
                             

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Joyce Ford                                                                                         KEYNOTE

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind


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