All this talk and information about Down syndrome has left me thinking about language. People struggle (myself included) to know how to talk about Penny. I remember when she was first born and I would say that we had expected a "normal" child, which implied that Penny was abnormal. Then I learned the word "typical" and it helped me not to feel that I was maligning my child by calling her abnormal by implication. I also remember calling her a "Down syndrome baby," as if her extra chromosome defined her more than anything else. I soon modified my description to the wordier, but more accurate, "baby with Down syndrome."
The most natural words to describe her are ones like cute, sweet, fun, outgoing, beautiful. But then there are the clinical words: chromosomal abnormality, mental retardation, disabled. And the politically correct ones: special needs, intellectually challenged. I have been trying to think about those words and how I want to describe my child, and other children like her, in both a precise way that doesn't ignore or minimize her extra chromosome but that also doesn't define her in entirely negative terms. I don't like so many of the words. First, retarded. The term "mental retardation" may be helpful in describing the fact that Penny will learn differently, and more slowly, than typical children. Unfortunately, the word "retard" and "so retarded" hold very negative connotations in our society. Then there's "disability" and "abnormality." My problem with these is that they are automatically negative. When we "disable" something, we make it not work. It is no longer able. Penny may not be able to do the same things on the same timeline as others, but she is not a "dis-abled" human being. In fact, we're increasingly impressed by her abilities.
One word I do like is "vulnerable." Penny is vulnerable physically, mentally, even socially and emotionally. Another is "dependent." Penny is, and will be, dependent upon others for care on some level throughout her life. Both of those words also describe what I want to admit about myself. That I too, am vulnerable, much as I like to see myself as invincible. That I too, am dependent upon others, much as I like to think of myself as self-sufficient. We are learning that Penny is different than other children—more doctors visits, more probable health concerns, slower development in some areas of her body and mind—but that she is also just like other kids. That she is first and foremost, a valuable human being who has much to give to the world around her, especially as we learn how to receive from her.