"His mom has Marfan's syndrome (which was a big factor in her pregnancy
complications) and he gives the appearance of being a Marfan's child
himself."

In my work with breastfeeding mothers of children born with congenital
disorders I have learned that how we talk about their children having a
disorder matters. Many women I know would be offended by hearing their
child referred to as being a "Down's kid" or "Marfan's child." How does it
sound if we say "a cancer woman," for example? Such wordings seem to be
experienced as putting undue emphasis on the disorder and inadequate
emphasis on the person. The child is a child first. Having a disorder is
one--and only one--aspect of that child's being. Of course, different
mothers are offended by different things. However, the odds of offending in
such circumstances seem less when using such phrases as "a child with
Marfan's syndrome," as was done in the first part of the above sentence.

With my own share of experience at unintentionally offending others,

Cynthia

Cynthia Good Mojab, MS, IBCLC
Ammawell
Email: [log in to unmask]
Web site: http://home.attbi.com/~ammawell

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