by Sara Galyon
The topic of children with special needs is becoming more and more prevalent in the youth ministry world, as it should be. One in four families in the US has a family member with a disability and, according to a CDC study in 2009-2010, 15% of children nationwide are classified as Children with Special Health Care Needs. The needs of each child varies, and can range from factors involving a physical impairment (wheelchair, interpreter, braille etc.) to emotional/behavioral, cognitive, or developmental impairment, such as autism, ADHD, or Down Syndrome. While this might seem like an overwhelming list for a youth worker to consider, we often don’t take time to remember that while this may seem overwhelming for us, it is exponentially more overwhelming to parents of children with special needs.
Parents and caregivers of any child take on an extraordinary task of caring for the physical, emotional, social and spiritual development of another person. This is daunting under seemingly perfect conditions, but when parents encounter a diagnosis, see a delay in “normal” development, or are told for the first time “we’d like to run more tests” parenting takes a turn in a different direction.
Special Needs Parenting: From Coping to Thriving by Lorna Bradley, is a fantastic resource for parents of children with special needs, also offering insight to youth workers, into the lives of families who care for those with special needs.
The book is structured as a study for personal use or small group with helpful discussion questions at the end of each chapter. The chapter I found most useful from my perspective as one who works with young people was that of the chronic grief. Often those of us with typically developing or abled children, or those who are not parents, do not understand what parents are experiencing, but most of us can understand the cycle of grief. Normally, when someone loses a person close to them, or experiences other loss, know what to expect. We expect them to experience the stages of grief identified by Elizabeth Kubler Ross in the book On Death and Dying, denial, anger, bargaining, depression, and finally acceptance.
We understand this grief, but what about the chronic grief experienced by parents of children with special needs? This book helped me to understand, and empathize with, the notion that many parents are constantly grieving the loss of “the expected child.” We all have expectations for our children, and sometimes when they don’t meet them, we grieve the loss of those expectations, but this grief is magnified for families of children with special needs.
The book also offers a great amount of hope through faith and the value of community. The author affirms the value of all of God’s children, and stresses the need of our communities to surround families of children with special needs. The community can offer help for parents with their own self-care, an issue the author stresses in chapter 5 as being paramount to also being able to care for one’s own family. Those of us in faith communities can be open to ways we can offer help for families caring for those with special needs, so that those moments of self care come as often as they are needed.
I highly recommend this book to parents of any child, and anyone who works with children. If you are living in a family with special needs, this is a great resource and would make wonderful small group material. However even if you don’t serve those with special needs, I still recommend owning this book as a resource for those who may come into your life who do.