Stepping Out Incorporated, our son’s group home hosted a birthday party to celebrate his twenty-ninth year. The party consisted of dinner and dessert chosen by Robert. All the guests are members of the group home or staff. They all voiced their approval of the menu. I attend because it gives me a chance to see this loving community in action. I also bring Lacey, our dog, who is a popular guest.
Robert has lived with Stepping Out for ten years. He moved in after a month-long hospitalization for mental illness. His stay in a mental health unit was eye opening to say the least. During our visits we witnessed many people struggling with mental illness with no one to visit them. Mental illness is an isolating disease. Drug after drug was administered to our son in order to decrease his delusions, with no success.
Stepping Out came to our rescue, staging Robert’s first group home birthday party, and brokered a commitment from him, to move in, once released from the hospital. Ten years later with the help of medication, a reliable routine, and daily exercise, he leads a happy life.
Parent advocates get used to managing their children’s lives. Most dread the day when they will have to give up control. Their fears are based in reality, we have all heard stories of vulnerable adults being abused. Often, we feel we know what is best for our child, and that the group home setting will never match our high standard of care. Some of us feel guilty for the relief we feel, when we are freed from daily care of a challenging child.
Our son was involved with activities that included older Special Needs people. If their parents mentioned they lived in a group home, my stomach would clutch with fear and anxiety. “How could I face allowing others to care for my sweet little boy?” I would then project my ten, twelve, fourteen, or fifteen-year-old, living away from the family. That is how fear works, projecting the worst possible case scenario, pushing you away from the present.
We have no idea how we will handle tomorrows challenges. Focusing on tomorrows concerns, steals todays energy. Enjoy your children now, it’s all too fleeting. The chatter of little voices will one day be something you crave to hear again, wishing that someone would ask you, “why don’t you think I am an angel?” Influenced by a network show about angels, my little man was sure he was one too. “Because people are people and angels are angels,” I would impatiently answer. I spent so much time trying to be “right” instead of treasuring these moments.
Some of us forget that the challenges we face as Special Needs Parents are universal to all children. We want what is best for them and we want them to live productive lives. Stepping Out structures our son’s days so that now I can be the parent of a twenty-nine-year-old person, not the enforcer of dietary restrictions.
We are not perfect at “accepting the world as it is, not what we wish it was,” but we realize the group home works for our family. While I often feel sad saying goodbye, our son is happy going back to his routine. Life never gives you everything you want!