 Tools
for Parents of Children with Disabilities and
Special Needs
Epilogue
The original version of this book was written as handouts for parent support groups
which I was conducting at United Cerebral Palsy of Tampa Bay from January 1980 on. They
were finally put into book format in 1988.
With our two children, we have used every section in this material in our lives.
Both of our children are independent and are actively employed in the "real world" and holding down
"real jobs." We as our children's advocates chose the "tough love" model in section 4 on Life Long Normalization
and got ourselves healthy enough to stand firm and insist on treating both of
them as
"normally" as possible.
It has been a long journey filled with:
- sorrow yet with joy
- confusion yet with direction and goals
- worry yet with confidence
- concern yet with satisfaction
- dread yet with thanksgiving
- anger yet with love
- disappointment yet with acceptance
- losses yet without regrets.
Connie and I are very proud of our children and whom they have become. We are so grateful for
all of their accomplishments They both can proudly point to themselves as
people responsible for their becoming the self-sufficient people they have grown up to be.
Our two children would not have become the adults they are today if their parents had not done many
of the building blocks contained in these materials. Connie and I had to accomplish the
following developmental tasks to insure that our two children, who are
exceptional in each of their own individualistic ways, would grow up to be as independent
and self-sufficient as they have become. These developmental tasks were:
- Handling and accepting our Kids the way they were rather than how we
wanted them to be and allowing ourselves to make
plans for their lives based on who they were rather than who we
"dreamed" or "expected" them to be or become.
- Fully grieving the losses involved in all of the transitions they experienced in life and
allowing ourselves to accept both of them for whom they were rather than whom we would rather
them
to be.
- Establishing a healthy bond with each of them so that they could feel that we loved and accepted
them unconditionally just for being alive rather than for what they were or what
they could
accomplish in life.
- Encouraging our kids to live as "normal" a life as possible and treating
them as
"normal" as possible.
- Encouraging their healthy sexual development.
- Maintaining our spiritual connection with God and gaining support from our faith
community in dealing with our issues arising from Melissa and Steven related issues.
- Successfully coping with discrimination and stigma resulting from having
being a family which did not "march to the drummer" of the other
families in our community.
- Communicating successfully with our children concerning their needs, wants and desires for the
future based on who they were and what they wanted to be.
- Communicating successfully with all of the teachers, coaches, therapists and counselors who assisted
our two children and our family during those long years so
that they could understand that we were "the experts in charge" and that our
goal was for our kids was to become their own "experts in charge," which
they has both successfully achieved in their lives.
- Maintaining an advocacy position for Melissa and Steven so that their developmental
needs have been met and so that they would be able to be successful advocates for their
own needs in the future.
As you can see by going through the tasks which Connie and I have accomplished, that we
have taken these materials seriously and applied it to our own lives. We have experienced
great success with the tools these material offer. Our hope is that you will apply these
tools in your own lives with your children with and without special needs and experience
similar success. You are writing your own book on your life and my hope is you will have
as successful ending as we have had.
Jim (Melissa and Steven's Dad and Connie's Husband)
We would love to get your feedback on how helpful this material was for you
please email me at jjmess@tampabay.rr.com | 
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