A woman’s daughter has just been diagnosed with autism. A couple struggles to deal with their brain-injured baby, still in the NICU. These courageous parents face an unknown journey with no preparation and no road map. What do they need? They need to be able to share their remarkable stories, to allow their grieving to unfold, to let go of their dreams for their child and for their own lives. They must manage the stress of day-to-day life and learn to navigate the systems of care and funding required for their child. They must do this and learn to pay attention to their own needs, as well as stay grounded in their relationships.
This is the process faced by parents and it is very difficult to travel this road alone. It requires support—from friends, family, caregiv- ers, and others traveling the same road—so that, slowly, they can begin to rebuild new dreams and learn to live life with the new real- ity of a child who has special challenges, with all its struggles and joys.
Parents of children with disabilities need support along all stages of the journey, not just the beginning. Issues arise such as how to help siblings, how to integrate their child into family activities, how to transition into a new stage of schooling, how to move through their child’s adolescence, and how to face an unknown future. What is often surprising to parents is that just when they think things are going smoothly, their feelings of loss can surface again. But being connected to others—whether through relationships with family and friends, parent support groups, or a therapist— helps parents move through these passages to create a thriv- ing family life, regardless of the form or make- up of that family.