DOWN SYNDROME The Chromosome of Love

Every parent hopes that their child will not only to be healthy but also "e;normal"e;. When a child presents a physical, emotional, or mental condition that falls outside the established standards of what is considered normal, the impact on the parents' world-when faced with an unexpected and often unknown reality-can be very profound, and in some cases, devastating, depending on the child's diagnosis. Facing, and learning to navigate, this different and special world can be an overwhelming challenge for many parents, and sometimes, at first glance, something that may seem insurmountable. For those of us who are parents of children with special needs, raising and ensuring the well-being of our child becomes a responsibility that will inevitably be present for most of our lives, largely depending on the level of independence the child reaches in adulthood. For many parents, the concern about what life will be like for our child once we are gone is something that will accompany us until the last day of our lives. My main intention in writing this book is to share with parents of children with special needs what I wish I had known, especially during Max's childhood and early years. There may be information that is not of personal interest to all parents as special education programs are not available everywhere, and not every parent has special needs children. There is also more personal information that I hope will serve as support for parents in raising their children, no matter where they live or whether their children have a disability. What I present here is a personal perspective based on my experience as the mother of a child with Down syndrome, residing in California, United States. This is my story.