What If It Was Me?
(A History of the Isaiah Foundation)
By Penny L. Phares ARNP, C.S.
It was 1982 when I met 16-year-old James. I was
working for Children’s Medical Services in a special project.
My job was to assist parents and teachers who care for handicapped
children. This day I was at a special school for profoundly retarded
children. Jerry’s teachers were very proud of him. He had
been working on holding up his head for most of the school year
and now he was doing this when he was reminded. Having severe cerebral
palsy before the 1980’s pretty much meant that you were invisible
to the world except perhaps to your parents or your teachers if
you were sent to school. Before PS94-142, when the government mandated
that all of America’s children would be provided an education
in a least restrictive environment, children like James were kept
at home, out of sight or placed in an institution, out of sight.
I was deeply affected by this handsome young man
who, with his liquid brown eyes fringed with long dark lashes, looked
to his teacher for praise at his efforts. His body was long and
lean about 85 pounds, curled on his side because of Scoliosis and
years of no pressure on long bones as well as muscles pulling against
each other in response to jumbled neuron signals. He had a thick
brown crew cut and peach fuzz that was almost a beard interspersed
with adolescent acne.
It was hard for me to look past signs of puberty
until the favorite toy; a baby rattle was placed in his hands. The
teacher and the aide struggled to turn him on his back to change
his diapers. The process took a while to clean the results of a
teenage appetite from an area contorted by contractures and covered
with thick wiry pubic hair. I was struck! Here is a human being
who is very aware of his surroundings, obviously hears and sees
and takes in information, but cannot move and cannot speak. He has
the developmental level of a 3-month-old infant in the body of a
teenage boy. In the coming years he will grow larger and still need
to be cared for like an infant.
When I met James' family and the families of the
other handicapped children on my caseload I drove home every day
in tears. These families loved their children and provided good
homes and special care for them. When I asked them what I could
do to help them the repeated request, “I wish I could find
some one to help me take care of my child.”
These families were not willing to leave their
helpless child with a stranger and many of the relatives they trusted
were afraid because the care was often technical or the child was
too fragile and might die in their care.
I covered 3 rural counties in Florida. Day after
day I cried and drove. I was a new Christian at the time and cried
and prayed, “Dear God, how can I find help for these families
when there are no resources?”
One morning I was reading the Bible and found
a passage in Isaiah.
“Is this not the fast I have chosen; to
loose the bonds of wickedness,
To undo the heavy burdens, to let the oppressed
go free, and to break every yoke?
Is it not to share your bread with the hungry,
And that you bring to your house the poor who
are cast out; when you see the naked, that
you cover him, And not hide yourself from your
own flesh?”
(Isaiah 58: 6-7)
Now I had heard that people thought that Florence
Nightingale was loony because she had a call from God. I also heard
that God spoke to His children through His word, but I was really
unsettled about this.
"What? You want me to bring these kids to
my house so their parents can have a break? But, God, I have a husband
who is a welder and a son and only 2 bedrooms!"
Months went by and the problem persisted. As I
traveled the roads I was convinced that God was speaking to me about
providing an answer for these families but I was afraid to tell
my husband about this situation because he might think I was nuts
and then what would I do about God? So I prayed for courage.
A few weeks later my husband wanted to go to some
meetings in another county and one of my patient families was there.
The mom had her little boy, Tim, back in the nursery because his
breathing was so heavy and rattled, she was afraid it would disturb
the assembly. Tim was her second child with Menke’s Kinky
haired syndrome. This was a maternal genetic disease that prohibited
the absorption of copper. These children have no melanin and no
muscle intervention. Tim was 4 years old, floppy like a rag doll
and his mother spent almost 2 hours feeding him. (poor suck swallow
reflex, no head control, multiple upper respiratory infections,
pre g-tube) Her first son died at the age of 2. This mom was tired,
depressed, and feeling guilty that her son was so thin. The marriage
was rocky and the older sister was lonely.
When I visited this family the following week,
Tim’s mother told me what a compassionate husband I had. “He
was so tender when he came back to the nursery to see Tim”,
she said. “I have never met a man who was interested in him
and would actually hold his hand.”
“Are you sure it was my husband?" I
asked.
She convinced me that my stoic Marine Corp- welder-
spouse was approachable on the subject of handicapped children so
I went to him that evening. He thought it was a great idea. He thought
that instead of remodeling our own home we should purchase the house
next door to our own and make it into a 4 –bed retreat for
children with special needs. He and another friend offered to serve
on the board and establish the Isaiah Foundation, Inc.
as a non- profit charitable organization to assist families with
respite care. It was 1984. So I waited. Certainly God would provide
the $150,000 to purchase and renovate this house that had been empty
for so long. The owners were eager to sell it. They lived in another
state and had no intention of living in it. I went to work with
plans and ideas about a Hubbard tank and an arboretum with birds
and butterflies and sensory stimulation. My husband started the
ball rolling to get fire permits and zoning adjustments. Two years
went by. The house remained empty.
When the mayor of the town got wind of the project
he began a campaign to prohibit the idea of any kind of facility
that would change the climate of the neighborhood. The battle that
ensued was confusing to me. How could a home for children who could
not speak and could not move lead to a town full of half way houses
for drug addicts?
In October of 1989 the State of Florida passed
a law that provided for group homes and foster facilities of up
to 8 residents to be allowed in residential neighborhoods regardless
of local zoning. In November the house next door sold to someone
else. I had the distinct impression that God was chuckling at my
assumptions.
In the meantime, the situation for Tim’s
family became worse and we started taking care of this child in
our home on the weekends to give his parents a break. The very difficult
task of feeding, diapering, suctioning and watching the clear blue
eyes of this sweet face as he worked to draw each breath and swallow
each bite was overwhelming. What if this were my child? What if
I had to do these tasks and feel these emotions 24 hours a day every
day of the week – for years?
Tim’s plight became public and others in
the community came forward to expand the Board of Directors of the
Isaiah Foundation. These men and women gave direction and
suggested a needs assessment. How many families are there
who need respite care? Over the next few months we solicited school
systems, social services and health care agencies in 16 counties.
The response enabled us to hear from actual families and we learned
that at that time in 1989, there were about 350 families who could
benefit from respite care within 60 miles of the facility we planned.
It was pretty apparent to me that we would not be able to serve
them in a 4-bed facility very soon. The Board of Directors advised
that we train caregivers to go to the families and care for the
children in their own home.
That was the last thing this nurse wanted to do.
How could I train lay people to go into a situation where I had
no control over their performance? What about my own professional
license? Yet within a week I was invited to participate in training
for trainers of the FDLRS (Florida Diagnostic and Learning Resource
Services) MITCH Program. (Models for Interdisciplinary Training
for Children with Handicaps). After the training I realized I had
taught nursing for years. Parents were not professionals yet they
learned about positioning and feeding, and suctioning and seizure
control. We could do this! Parents could be introduced to lay persons
who were compassionate and caring individuals trained to become
familiar with the special needs of kids. Parents would take the
responsibility for completing the training of the caregiver for
their particular child and determine if they would leave their child
in this person’s care. The Isaiah Foundation would
do the training, background checks and subsidize the cost of the
care if it were beyond the parent’s means. In 1992 the Isaiah
Foundation held its first training course and began providing
care in 5 counties.
James and Tim and many others have passed on.
They have taught us so much about patience and kindness and quality
of life. After 20 years of “corporate “ respectability,
I know that it is nursing that drove the desire to cross the T's
and dot the I's, but to remember to ALWAYS to
be FAMILY DRIVEN. The Florida Board of Nursing
has approved the training course. Nurses capable of teaching and
assessing appeared out of nowhere. (A real miracle when you consider
the nursing shortage). One county group has become so actively involved
in the work of the weak and disabled that they have to direct themselves
and so have become an independent agency.
Laws have changed since 1984 and organizations
like Fundamentally for Families, the Bureau of Exceptional Education,
PS 94-457 part B, and the Medicaid Waiver Program have improved
the situation for disabled children in Florida. As nurses we know
that our perspective always leaves us with the feeling that more
needs to be done and things move too slowly, but the promise is
at the end of the verse in Isaiah;
“Then your light shall break forth like
the morning, Your healing shall spring forth speedily
If you extend your soul to the hungry and satisfy
the afflicted soul.
Then your light shall dawn in the darkness, and
your darkness shall be as the noon day.”
(Isaiah 58: 8, 10)
Delivered by Penny Phares on March 7,
2003, at the 16th Annual Clinical Excellence Conference in Orlando,
Florida. This conference is presented by Florida Nurses Association
and Intervention Project for Nurses, and honors nurses in clinical
practice. Nurses share their experiences and demonstrate evidence
of their effect on the course of their patient's experience under
their care. These exemplars also demonstrate the expertise of these
nurses based on the clinical decisions they made and the care they
gave. FNA members nominated these nurses as experts in clinical
practice.
The names of the families mentioned have
been changed to protect their privacy.
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