Foreword

Article Outline

• Copyright

Twenty-three years ago, I read an article I have never forgotten, entitled “There’s something wrong with Michael: a pediatrician-mother’s perspective.”¹ Here is what Adrienne Butler said then about the critical moment when normal became abnormal, and everything all right in her world became everything all wrong:

“The realization that all was not well came to me suddenly and with urgency one night when Michael was nearly 7 months old.

‘I don’t know why I keep fooling myself,’ I told my husband that night. ‘He should be rolling over. There’s something wrong.’

‘Are you sure?’ John asked.

‘Yes.’

I can remember so many feelings from that long night: sick, sick nausea; fear; a paralyzing sense of loss. I remember seeing my husband weep, holding Michael close, wanting the terrible thoughts to go away.”

She went on to describe movingly how the experience of having a child with developmental delay had affected her life, her marriage, her other children, and her professional practice. She could see, as often we can’t, how unaware physicians and other health care workers can be, unintentionally causing great distress to children and parents. She ends with this statement: “I only hope, as I grow with Michael, that the lessons he teaches me will influence all my encounters with patients.”

Most of us do not have children with mental retardation and must try harder to learn these lessons. This month’s issue provides our readers with the tools that are needed to give optimal care to these special children and their families. The authors clearly understand the extent of the life change that is required for families with children with mental retardation. In addition to sections on diagnosis, etiology, and management of the mentally retarded child, the authors include an entire section on family support. As a wonderful bonus, they include a rich guide to community resources. It is up to us to use this information to truly make a difference in the lives of these children and their families.

• 1 Butler AB. There’s something wrong with Michael: a pediatrician-mother’s perspective. Pediatrics 1983;71:446-8. (If your journals don’t go back this far, it is worth the trip to the library to retrieve this article.)