Forever Parenting

INTRODUCTION

This book is for those unheralded and mostly unacknowledged heroes, parents of adults with special needs. In my previous books I wrote about families who had children under 21-years-old with disabilities. However, the quest to obtain needed services for our children changes substantially after the school bus does not come any more. Mandated services and parents are often on their own to seek out the best situations for housing, working, recreating, and socializing. Families naturally change over time. In a normal progression of family life, parental relationships with children usually adjust from direct parenting to supportive and encouraging roles as adult children mature and sometimes have their own families. A parent of an adult with special needs may see progress at a very slow rate if at all, and often must remain in a direct parenting role despite their own concerns with work, health, retiring, or aging. When you are a parent of a special needs child, parenting is forever.

I wrote this book to give parents and other caregivers encouragement that they are not alone and to give those who are not involved with the special needs community an awareness of the concerns of these families. I also wanted to tell the stories of courage, determination, love, faith, and hope that kept these families focused on their child’s needs, and how they overcame adversity and kept moving forward.

Many books about parenting adults with special needs focus on laws, regulations, finding services, and financial arrangements. These topics are all valid, but I chose to focus mainly on the realities of daily living to show struggles, decisions, and family dynamics. It is in the trenches that real life occurs and parents of special needs adults, advocates, and care givers can benefit from the experiences of these families. All of the people I interviewed for this book lived in Virginia, because that is where I live and it was practical, but the types of stories probably are universal. Each family had a different story and a different path and yet all those I interviewed wanted the same thing, the best possible life for the person with special needs.

Each chapter in this book tells the stories of one or two families and their journey with an adult with special needs. I limited my research to adults who were identified as having intellectual or developmental disabilities before they were age 18 and are now over 18. As our children with special needs age, we have less regular contact with other parents in the same situation. When my son Chris was young and in school I would have regular interaction with other parents, primarily at school programs. It was the one place that I did not feel like the only one out there with a child with special needs. Sadly, that regular parental contact ended when my child’s schooling ended. For those many families with adults with disabilities without a touchpoint such as a school, perhaps this book will offer the affinity of other parents.

It was a privilege to interview people for this book and I am sincerely grateful to each one. My hope is that these stories will provide information to caregivers, advocates, and to the public to realize the many dynamics, considerations, and circumstances involved in parenting adults with special needs. Laws, regulations, and policies are often enacted without full realization of the true consequences for those people with special needs who are being regulated.

My ultimate desire is that with awareness will come understanding, and with understanding, strong and effective support for those who are forever parenting.