 Tools
for Parents of Children with Disabilities and
Special Needs
Patricia: A Success Story
in Process
Patricia's Early Beginnings
Patricia was only 11
days old when her parents Nancy and Mike brought her to UCP of Tampa Bay for an
early intervention program newly established for children with Down Syndrome.
While at UCP for the next 13 months, Patricia received Occupational Therapy
(OT), Physical Therapy (PT), and Speech Therapy. Her parents were trained by the
therapists in ways to stimulate the growth and development of their daughter.
At the same time Patricia
was gaining in all aspects of her development, her parents were participating in
a support group conducted by me to address the myriad of issues, which face
parents for the first time when they realized they have a child with special
needs. They were confronted with their grief and loss issues and how to accept
the loss of their “dreamed for child” and to accept the reality of a child who
would require life long advocacy to insure that her needs were met. Nancy and
Mike were told at that time that it was great that they had this initial support
group when Patricia was an infant but that they would need to seek out support
and guidance for themselves over her entire life time to address the
complexities of helping her live as normal a life as possible. They were given
instructions on dealing with the exceptional educational school system to insure
that Patricia received as much inclusion with typical children while she was
being educated. They were given information on how to deal with their marital
and family needs so that these units were not ignored while dealing with
Patricia’s needs. They were encouraged to dig deep into their own spiritual
foundations so as to be able to “let go and let God” lead them to the strength
they would need as they fought the good fight to provide Patricia and their
family all the support they would need.
Nancy and Mike never lost touch with me over the years.
When they first arrived in their new hometown, they called to say that they were
unhappy with the IQ testing she had been given prior to her entry into school
that year. They called because they were confused and did not know what to do.
"Should they contest the testing?" "Should they demand a private evaluation?" I advised
them to leave the test stand as it was for the next school year. My belief is
that numbers do not make a person, experiences and life makes the person. If
they were not happy with the services she was being provided then they should
seek a new evaluation, which might help her get the services she needed. In the
meantime I recommended that they work to get her the services for which she was
entitled under the law. That they did and they have never stopped working to get
her the most optimal programming available.
Nancy began the local Parent to Parent Unit in 1991. She
started this parent support program after getting loads of training from the
Parent Education Network (PEN) from the state. She became a facilitator of
parent support groups and eventually a PEN trainer as well. She coordinated a
Part H conference in her community and for two years conducted an inclusion
summer camp with United Way funding. She is an ardent advocate for the needs of
all people with disabilities. She lobbied with the school board, the
superintendent, and the schools central administrative staff. Her biggest effort
was the promotion of full inclusion of as many children with special needs as
possible. Obviously, Patricia was the beneficiary of much of this advocacy.
In a glowing recognition of Nancy's advocacy skills and
Mike's ongoing support and dedication to the promotion of Patricia's educational
needs, the school district's director of inclusion services called this couple
"Pathfinders" for parents and students in their school district. He said what
was so nice about Nancy and Mike was that they did not come in and say: "fix
it!" They rather would come in with a list of alternative options to consider to
correct a problem or issue which had come into focus that was hindering the
successful inclusion of their daughter. He emphasized he never was put off by
these parents' attempts to advocate for their daughter.
Mike and Nancy did not have Patricia in a vacuum.
Patricia was their fourth child. The oldest is Mike, a graduate of the
University of South Florida, married to Maria, and father to Alexandra the first
grandchild in Mike and Nancy's immediate family. The next oldest is Charles,
also a graduate of the University of South Florida, and married to Elisabeth
whom he met at a Parent to Parent Christmas party. Elisabeth's sister Krista has
special needs. Patricia's third sibling is O'Hara, who shares the family
signature flaming red hair. O'Hara, a graduate of Florida State University, is
now enrolled in Chiropractic School.
Mike and Nancy have worked hard to provide opportunities
for all of their children, which seems somewhat daunting given their amazing
accomplishments and success.
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