Something to think about.
Posted: March 6, 2013 Filed under: Down syndrome, people first language | Tags: advocacy, Down syndrome, hate speech, language Leave a commentEven though I just posted this about needing a personal growth vacation, it didn’t seem right to let this go…
“The hardest thing about having an intellectual disability is the loneliness […] We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.” “So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”
This is a part of an opinion piece in the NYTimes about the word “retard”. The quote is from a man named John Franklin Stephens. He has Down Syndrome. Maybe LP will grow up one day and speak out as eloquently as this man did.
He shouldn’t have to though.
Sandman Schmandman…
Posted: March 3, 2013 Filed under: Down syndrome, medical stuff | Tags: Down syndrome, Polysomnography, Sleep, Sleep apnea, Sleep disorder 4 CommentsDear Mama,
Well. Let me just come out and say it. Stop sticking crap on my hot baby bod. It really displeases me. And let me remind you, I don’t cry. When my sisters plaster me with stickers, scream in my face (lovingly), you forget to feed me, I have to do tummy time… I am very understanding of all these things. My extra chromosome really seems to have you all in a tizzy so I figure I’ll cut you a break on some stuff.
Read the rest of this entry »
Matters of the Holey Heart
Posted: February 28, 2013 Filed under: Down syndrome, medical stuff | Tags: congenital heart defect, Down syndrome, echocardiogram, worry 4 CommentsDear Mama,
I didn’t love yesterday. You took me to one of those places that have no windows and I had to get naked while some strangers weighed and measured me. Those scales are cold, if you haven’t noticed. Please don’t ever put me on one again. You can obviously tell I’m growing because your arms are starting to get tired when you hold me, I don’t know why you keep needing a number. Then you put a bunch of sticky wires all over my hot baby bod. Didn’t like that either, especially when you peeled them off, one by one. Read the rest of this entry »
Kimchi Latkes 