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"Like a starving man at
an all-you-can-eat buffet, I began to access
information and resources. I attended
workshops and conferences. At these meetings
I soon learned I was not the only person to
have a child with a disability. I began to
learn from these parents on how to advocate
for my child effectively."
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Father of Two
Wilbur Hawke
My introduction to the world of fatherhood came
with the birth of a healthy male child we named
Conan, before the movies made it a household
name. I can still recall the doctors’ remarks as
my son emerged into the world. "From the size of
those shoulders it looks to be a boy on this
end," soon to be followed with "It looks like a
boy on this end too!" The next five years
progressed normally and without event, my wife
and I learning how to be parents by trial and
error. Then came the birth of child number two.
Once again my wife blessed me with the gift of a
strong healthy son. For the first six months,
Cayman, which means island man, developed in
advance of what all child publications said he
should. Having acquired our 2.2 children and
being married for ten years, it looked as if we
were set to settle in and live the traditional
family life.
We were not prepared for the course of events
that soon followed. Cayman developed flu like
symptoms which introduced us to the first of
many new terms, such as meningitis, soon to be
followed by hydrocephalus, shunt, ventricle, and
a host of others. The ensuing struggle to save
our son’s life is even now, eleven years later,
difficult to relive. The one thing that I can
never forget about the month long hospital stay
was my promise to God that if he would let my
son live, I would take care of him, knowing that
the effects of this disease were often
devastating. As I held my son and watched him
lose half of his body weight with little sign of
improving, I never lost hope that things would
work out. God answered my prayers and now I had
to keep my end of the bargain.
The care that Cayman would require meant one of
us would have to quit work and provide full time
care. My wife’s income was greater than mine so
the choice was not a difficult one. This was a
new experience for me, having been raised in a
family where the father went to work and the
mother stayed at home. I learned to change
diapers, cook, clean, and do laundry. I will
admit there were times my family all wore pink
underwear until I learned to separate the
laundry. Even now they refer to me as "Chef from
a can," but we pulled together as a family and
survived.
Our doctor said it would be impossible to
determine the extent of damage done until Cayman
was older, then referred us to an early
intervention specialist in our county. The
group’s name was Step by Step; little did we
know at the time just how appropriate the name
was. We found ourselves at the beginning of a
very long road to try and re-teach Cayman all of
the things he had done so quickly before. The
child who was cruising at six months had to
learn to crawl again. Once again new terms --
occupational therapy, physical and speech
therapy -- all became commonplace in our home.
The early intervention was working and Cayman
continued to make steady progress. When he
turned three, testing finally revealed what
would be the worst blow dealt to our child.
Cayman had lost 80 percent of his hearing and
another term, deafness, entered our vocabulary.
Cayman was fitted with a new set of hearing aids
and we continued to move forward. Through all of
this I began to feel like the Stranger in a
Strange Land. Sitting in the pediatrician’s
office or in the Pre-K therapies I was the only
Dad to be seen.
At first I felt less than adequate when
confronted with the task of dealing with
professionals. I did not possess the day-to-day
history of my child required to answer the
questions posed by the doctors and therapists. I
had a better understanding of why these
professionals would always turn to my wife when
seeking information about our son. I began to
develop a healthy respect for my wife’s
abilities to cope so nonchalantly with issues
that to me created crisis situations. As time
passed, I too began to acquire the skills needed
to fulfill the tireless, endless, thankless task
of primary caregiver for our two sons. With the
acquisition of these skills came a self
confidence in my abilities and an understanding
of the role I had accepted. With the support of
my very patient wife I continued to make steady
progress, and the whining of our sons began to
diminish.
The next step came when we were weaned from the
warm fuzzy protective environment of pre-K and
went off to public school. Having an older
brother who had already been at the local
elementary school, it was only logical to me
that son number two should attend the same
school. A special school in a neighboring county
or even another state where we could see our
child him once a month was suggested but quickly
rejected. Once again I found myself submerged in
an environment alien to most fathers, the
responsibility of dealing with the school
system.
Cayman went to a regular class, had friends, and
all seemed fine. He was getting some extra help
from a special education teacher and from speech
therapy. We attend a meeting called an I.E.P.
(Individualized Education Plan) once a year
where we listened to a whole lot of people say
things we really didn’t understand, but we left
secure in the knowledge so many people must know
what was best for our child. By the end of
second grade Cayman was beginning to develop a
severe gap in reading and language skills
compared to the other children. We attended
another meeting where we were informed the best
place for our son would be a program in a
neighboring county just for deaf children. We
were told the bus ride would only be two hours a
day and Cayman would receive the services he so
desperately needed. Still trusting in the
opinion of so many, we consented.
The bus ride turned out to be two hours one way
-- four hours a day. The pain we were
experiencing when we placed our son on the bus
each morning in the darkness with a pillow and a
blanket, and then watching the neighborhood
children arrive home from school each afternoon
only to have to wait an additional two hours for
our child to come home cannot be put into words.
The professionals we so readily trusted didn’t
seem too willing to listen to our concerns.
A new chapter in my life began and once again I
entered an arena dominated by mothers. I found
myself lacking in the skills or having the
information necessary to accomplish the task at
hand. The difference this time was that my wife
also lacked those skills. Our vocabulary
expanded to include more new terms, a few still
dear to me today -- Free Appropriate Public
Education, Least Restrictive Environment,
Individualized Education Plan, Section 504, and
I.D.E.A. (Individuals with Disabilities
Education Act).
Our first taste of discrimination was very
unpleasant and a bitter pill to swallow. Our
search for information began with my wife
visiting the library and myself going to the
yellow pages. We were given some direction by a
very brave ESE teacher who mentioned "least
restrictive environment" and something about
section 504, but she could do no more for fear
of losing her job. Our search led us to an
organization called the Advocacy Center for
Persons with Disabilities; they informed us of
certain rights granted parents of children with
disabilities not mentioned by the local school
district. We were also informed of a group
called Family Network on Disabilities of Florida
which was something called a Parent Training and
Information Center. Like a starving man at an
all-you-can-eat buffet, I began to access
information and resources. I attended workshops
and conferences. At these meetings I soon
learned I was not the only person to have a
child with a disability. I began to learn from
these parents on how to advocate for my child
effectively. As before, I found myself in a room
of a hundred women, with myself being the only
male. I admired their tenacity and brilliance.
The lessons I learned we applied to returning
our child back to his neighborhood school. This
involved teaming with other parents and
attending school board meetings, filing
complains with the Department of Education and
eventually filing a complaint with the Office of
Civil Rights, U.S. Department of Education.
That summer our son returned to his local
elementary school; he was provided the
appropriate services to enable him to be taught
alongside his non disabled peers. We noticed
changes in Cayman. The stories he had written in
the special school were about his brother,
mother, and myself. He now wrote about his
friends at school. He began to blossom and was
invited to birthday parties and sleep overs. He
was appointed the Collier County Dreamer and
Doer, a Walt Disney program honoring individuals
who have overcome adversity to become
successful. He was awarded a medal by Miss
America, who also happens to be deaf. Today
Cayman continues his success as an honor roll
student in regular education. His four hour bus
ride is just a five minute bike ride down the
street.
As for his father, I now work for the Family
Network on Disabilities of Florida teaching
others the lessons I learned from my son. I am
happy to say that today I don’t have to look
very far in the crowd to find a Dad. The task of
raising and advocating for a child with
disabilities is enormous, too much for any one
parent to go it alone. Mothers and fathers will
find strength in working together for the well
being of their entire family.
Wilbur Hawke
580 5th Avenue
Marco Island, FL 33937
Published in "Fathers Voices," Exceptional
parent Magazine.
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