We all dream about what our children will be like when they are born and look forward with joy to their arrival. When we have a child born with, or diagnosed with a disability, our whole world seems to change in an instant. Feelings of shock, panic, numbness, anger, and disbelief are typical. There are so many questions and uncertainties. The first days and weeks can feel overwhelming and isolating. We are suddenly introduced to a maze of services and professionals, jargon and diagnoses. Fortunately, families don’t need to travel this road alone.
Just as it is important to identify resources and supports for our children in our community, it is essential that we, as parents, take time to identify our own needs as individuals. As parents of children with special needs, we do everything for our children that parents of "typical" children do and take responsibility for meeting the special needs of our children. This may involve, for example, regular and frequent medical appointments, home therapy sessions, appointments with physical and occupational therapists and special educational interventions. We all need to take time to replenish ourselves, to take one day at a time and to celebrate our strengths and accomplishments. The pain we initially experience can be triggered again and again throughout our children’s lives. Missed milestones, birthdays, holidays, and special events can all trigger strong emotions. When possible, talking about your feelings with your spouse or a trusted individual can help you work through some of your feelings. Talking with other parents who have children with special needs is often helpful. They have experienced similar challenges and can understand your frustrations, anger, and fears, as well as share in the celebration of the many accomplishments and victories.
Our roles as parents change as our children grow from early childhood to adolescence and we help them deal with personal changes as well as social and vocational issues. Some of us may become advocates, working to ensure that schools, recreational facilities and community resources provide an appropriate and welcoming atmosphere for our children. Full participation in their community life will help our children develop friendships and relationships that will sustain them throughout their lives.
We want our children to live as satisfying a life as possible. We dream that our children will live, make friends, attend school and work in their communities. As communities learn to embrace all their members, these dreams will become reality.