The other day I heard a doctor who works with medical students say that the students need to learn that life does not end just because you have a child with disabilities. Ever since I heard that, it’s been bothering me. Life as you know it ends whenever a child comes into your life. Everything changes. You are now responsible for a new life. How can it not change? If that child has disabilities the impact will be greater yet. If that child has severe disabilities, your life will never be the same again.
Instead of teaching our future doctors that a child with disabilities will not alter the fabric of the parents’ lives, they should be made aware of the new skills needed, the new stresses faced, and the new issues that must be dealt with by parents. We need doctors that take family situations into account. Who realize their patients health and progress are affected by the health and abilities of the parents. Who honor the potential of the child and the contribution of the parent. Because an understanding of all this is critical to the child receiving appropriate care and to the parent receiving appropriate guidance in the care of that child.
We all know the stories of the child with autism kept waiting for an hour and a half in the doctor’s office. We’ve heard of the child put on a special regimen or diet without adequate instruction to the parent of how to manage it. We’ve experienced the doctor who is afraid to treat a child for a simple illness because he doesn’t understand their primary diagnosis…and has no desire to learn. Parents already dealing with a difficult situation often need to deal with the deficiencies of the medical care they seek for their child as well. The doctors of the future need to recognize the great joy that any child brings to a family while respecting and understanding the impact that a child developmental disabilities will have on that family forever.