By Dianne L. Haas, Ph.D., R.N.
Pregnancy brings with it a wide range of emotions - joy, fear, happiness, anxiety, anticipation, longing, and excitement, to name a few. All parents expect that their child will be healthy and robust at birth. No parent plans for the delivery of a very premature infant, a child with a congenital disability, or a baby who is found to have an intellectual disability, have a genetic disorder, or a chronic health condition. Unfortunately, in the natural course of events, these things happen.
Making a decision to have a child is, whether it is realized at the time of conception or not, also making a lifelong commitment to another human being, For parents of a child with a special need, the complexity of that commitment is multiplied many times.
We also do not expect, as a course of nature, to outlive our children. And many children end up caring for their parents in their later years of life. However, for the parent of a child with a disability, that is often impossible, and in fact, caring for a person with a special need involves responsibilities that may go beyond the grave of the parent(s). Thus, lifelong planning is of paramount importance to these families.
This discussion is aimed at providing some helpful hints that will lead to securing a healthful and safe living situation for a person with special needs for his or her entire life. This includes during the life and following the demise of his or her parent(s). As important will be a discussion related to maximizing the optimum potential of the person with disabilities or other chronic condition throughout his or her lifetime. It will also be one in which I will share the insights that I have gained, and continue to gain on a daily basis, in relation to my 33-year-old son, Nicholas, who has developmental disabilities and has speech and language impairments.
Nick lives independently with his partner, works, drives a car around the neighborhood, for the most part supports himself economically, and has frequent social contact with friends and family. This sounds pretty normal to me, but how did we get there? I can only talk from the perspective of one parent's experience, but I believe that some of the approaches we have taken with Nick provide helpful universal insights that others may find useful. I probably could write a book, but that is not the task here, so instead I share willingly in brief what I have learned and information about both our successes and our failures.