That's So Retarded

What a horrible phrase that is, right? It hurts so many of us in this community to hear someone throw that out like it’s no big deal. This girl right here:

She is not retarded. She is not a retard. She is a sweet, loving child who adores her big sister and her cousin. She loves to sit on her mom’s lap and read books, she enjoys sitting at the table and cutting paper into confetti. She dances and sings and swims like a fish.

I once received a letter from the geneticist we saw when Olivia was first diagnosed with 5p- syndrome. This geneticist saw Olivia twice, once to discuss what 5p- means (she wasn’t all that well read on the subject) and once for her to confirm that neither my husband nor I have the syndrome or any sort of balanced translocation of our chromosomes. We were tested because we wanted to know if our older children needed to be tested too. No, they do not. This was a random deletion.

The letter I received from the geneticist, the one who saw Olivia twice, for a total of an hour maybe, stated that Olivia would likely suffer from mild to moderate mental retardation.

I threw that letter away.

I realize that tossing the written evidence doesn’t change the possibility that Olivia was (is) cognitively impaired, but I wasn’t willing to keep something like that around. I felt like that doctor hadn’t taken the time to get to know Olivia and she had absolutely no authority on determining what Olivia’s potential might be based merely on a few lab results.

Our developmental pediatrician, the one who finally ordered the test that brought us the 5p- results, was much more trustworthy in my mind. She talked to us, she examined Olivia, she sees her every two years these days and she is the one who told us not to research the syndrome because the data is too old to be taken at face value. She also never once used the R word. She told us to take Olivia home and love her and expect as much out of her as we expect out of her sister. She reminded us that Olivia, at two years old, had already proven so much of the research wrong and that her potential was unknown.

The R word does not apply to my child. And I’d appreciate it if everyone would just stop saying it at all, especially as slang for “stupid, slow, etc.” Can we all agree that this word needs to go? Please.

Today is the 4th annual Spread the Word to End the Word Campaign. It’s the least we can do for our kids. The very least.