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Introduction

"Renee and Ned, we need to have a talk with you." Snuggled close together on the hospital bed, while they wait for the nurse to bring newborn Cassie back, the couple look surprised to see you enter their room together with their obstetrician, Dr. Wu. As he gently hands the blanket-swaddled infant to Renee, Dr. Wu takes a deep breath and speaks quickly, "This is Karen Wilson, a nurse who works with kids who have disabilities. I’m sorry, but we’re pretty sure that Cassie has Down syndrome. Karen can help you get connected with the right agencies, and tell you what to expect as Cassie grows up."

Watching the family closely, you see that Renee seems dazed as she clutches Cassie tightly to her breast. When Dr. Wu finishes, Renee smiles brightly and demurs, "There’s nothing wrong with Cassie. Look how alert she is! I know she didn’t nurse very well yesterday, but she’ll do better once she’s home." Ned, on the other hand, stands abruptly and brusquely asserts, "Well, both of you made a pretty big mistake. Our daughter is just fine, and we’re ready to go home right now." He turns his back and starts gathering up the flowers and congratulatory cards from around the room.

As a nurse case manager for the Developmental Disabilities Clinic, you know that Cassie and her parents have a long road ahead of them. While their initial denial is a normal, protective mechanism, you know that Renee and Ned will soon be coping with the other stages of grieving that follow the diagnosis of disability in a child. Over the next two days in the hospital, you spend time getting to know the family and provide them with basic information about Cassie’s issues. After discharge, you make a home visit to begin dealing with the most immediate issues:

The grief process that follows the diagnosis of disability in a child.
Family systems and their impact on the child with a disability.
Stressors faced by families of children with special needs.
Family expectations regarding the child’s disability.