Tools for Parents of Children with Disabilities and Special Needs

Introduction

CONTENTS:

Dedication
Special Thanks
Introduction
Use of Journal Writing with this Material
Prologue

Dedication

To all parents of children who have been enrolled at United Cerebral Palsy Child Development Center of Tampa Bay who have shared with me their fears, tears, sorrow, hopes, and dreams for over eighteen years and who were the inspiration for this material.

Special Thanks

Special thanks to the following staff member of UCP of Tampa Bay: Nancy Garcia, Chrisie Pederson and Bulinda Brown for their assistance in helping complete this revised edition.

Introduction

In this material you will be exploring your feelings concerning your child with special needs. You will review how well you are coping with the diagnosis and grieving the losses involved. You will analyze how the child's problems has affected your bonding. You will review the lifelong needs of your child and how to manage your behaviors in response to your child's behaviors. You will explore the sexuality needs of your child. You will assess the spiritual dimension of your child's needs. You will review what is discrimination. You will practice communication with your child and about your child's condition. Finally, you will review your role as advocate for your child. This book is intended to be used by parents as a motivational reader and in parent support groups as an outline for discussion and stimuli for emotional response. This book is not a "how to'' but rather is a "what if'' book. The purpose is to provoke, challenge, irritate and motivate.

Use of Journal Writing with this Material:

At the end of each section you will be provided with stimulus questions for you to respond to in a Journal. The Journal will be your documentation of your journey in dealing with your feelings concerning your child with special needs. Using a Journal will provide you with a systematic way to record your feelings and observations as you cope with the issues arising from having a child with special needs. Use the Journal in the following ways:

Respond to the questions at the end of each unit and then in a year return to your Journal and see how you would respond to those questions then. Do this annual review to monitor how your response changes over the years. Keep the Journal current and write down those responses which differ from your original responses to record how your feeling have change in relating to issues surrounding your child with special needs.
Use the Journal to record your response to stimuli or situations which occur during the day, week or month which relate to your child with special needs. Record in your Journal response to the following questions:

What was the stimulus or situation which affected you?
What was your response to the stimulus or situation?
How did you feel about your response to the stimulus or situation?
How would you have improved how you responded?
What would you do the same in the future to a similar stimulus?
What did you learn from this stimulus or situation which you can apply in the future in dealing with other issues related to your child with special needs?

Record in your Journal your goals for your child with special needs so as to monitor how those goals change or modify over the years.
Use the Journal as a tool in a support group with other parents of children with special needs so that your group can stay focused on feelings and developing coping strategies which are rational and healthy for your children, families and yourselves.

I would enjoy getting your feedback on how helpful it is for you so email me at jjmess@tampabay.rr.com Sincerely, Jim Messina

Prologue

The couple waiting outside the testing room was pacing the floor. Their emotions ran the gambit from excitement to sheer terror. Their son was being evaluated and they feared the worst. To make the waiting time go quicker, they reminisced about their son's life. A smile appeared on both their faces as they remembered the excitement of their pregnancy and the dream of a "normal" happy baby boy. Their moods changed rapidly as they recalled the traumatic delivery and the horror they endured the first month of their son's life in the intensive care nursery. They reflected on the hours of waiting in the variety of doctor offices only to receive blank stares and false hopes. The simple milestones of development were delayed and they recalled fearing that their "dream of having a normal child" was becoming less and less a reality. They chatted on about the long arduous school experience from infant stimulation, developmental preschool, exceptional education classes to the joyous high school graduation. Their parenting, perseverance and their son's strong will is what brought them to this point in time. The testing room door opened and the evaluator donning a happy grin came into the lobby. Their son had done well and was to be accepted into the employment program. This would mean a new milestone in their lives. He would be moving out of their home in the fall to live in the program's group home. At twenty-two their child was coming into a world of his own. Although they knew it would be hard to let go, they were excited, this was a world they had advocated for all of his life.

Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., Email: jjmess@tampabay.rr.com Š1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D. Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.