As part of my role as Parent Mentor with Prader-Willi Syndrome Association, I am often in contact with parents who have babies newly diagnosed with PWS. During a recent conversation with a new parent, she commented on the ridiculous things that people had been saying to her about her childs diagnosis. Although it has been 13 years since David was born and we received the devastating blow that he had PWS, some of the comments we got from people who just don’t get it are fresh in my mind.
I guess you could say it is one of my biggest pet peeves… and the list is never ending.. I will give you all an idea of some of the things I have heard over the years… please feel free to add your own in the comments section at the end of this entry… I will add them to my list.
These are in no particular order… In red are the things I would love to say to these stupid comments.
#1 Wow.. He LOOKS Normal! (Yea.. too bad YOU cant ACT Normal)
#2 Is he retarded? (Not as Retarded as you are for asking that Question!)
#3 Did you know before you had him that there is something wrong with him? (Yeah, but we kept him anyway)
#4 What is wrong with him? ( He has Prader-Willi Syndrome, what’s your excuse?)
#5 He will grow up to be normal though, right? ( Can you define NORMAL?)
#6 Does he know there is something wrong with him? ( Do You know that you are RUDE?)
#7 At least you have Normal children too! ( Yeah it’s a good thing, it makes up for the fact that he has PWS)
#8 God gave him to you because you are special. ( Can’t even comment on this one)
#9 I could never do what you do. ( You’d be surprised what you can do if you have to)
#10 what will you do with him when the new baby comes? ( swear to God, this was asked of me when I was pregnant with Jake) ( why we are going to sell him to the Gypsies of course!!!)
Ok… just had to get that off my chest, these things shouldn't bother me any more, but they still do. My Husband Dave's favorite saying lately is
"You can't FIX Stupid" That couldn't be more true!!!
Please add you own!!
~Vicki
Sunday, January 27, 2008
People Say the Dumbest Things
Posted by Vicki at 5:56 PM
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6 comments:
These are great Vicki - I have heard some of the same or very similar comments. Thanks for giving me a chuckle.
Julie
Fellow mom to a child with PWS (Ryan, almost 4)
#8 is my personal favorite! Thanks for sharing.
Sonya
Mom to John, 1 (PWS)
1. "WOW!!! For an autistic child, he sure does make good eye contact!!!" He's not autistic!!!! Must he where a physical "label" with his dx for your convenience!!!?"
2. "What's he saying??? How do you understand him!!!? Does he have a cleft pallet?" He's saying you're a big ugly stranger who should go on a diet and mind your own business because he wasn't speaking to you in the first place!!!
3."WHAT are you feeding him!!!?" Well lady...he has PWS and type 2 diabetes but I still enjoy shutting him up with a box of twinkies every day!!! DOUBLE DUHHHHHHHH!!!
~From Sandra
I had a mom say to me at my oldest sons baseball game.Well,he will grow out of this,right?I was thinking,are u kidding me lady.How dumb are you?Have u not listened to a word I have said to u over the last 3 weeks about PW.I just looked at her and said,Oh yeah,dont u worry.Shelly-mom to Charlie-7 months
Vicki -
I could not figure out how to post but our favorite was -
Our favorite was from a NICU doctor " well we don't know if he is a boy or not but that is the least of his problems."
Very helpful when you have family and friends coming in for his Bris.
Rachel S.
Several years ago I was in the grocery store with the older of the two grandsons who have PWS and a woman came up to me and said something extremely rude and insensitive. I turned around and looked at her and said, “He has a mother who loves him very much and works very hard to give him a wonderful live, including teaching him right from wrong and good manners. Apparently that is more than you had.”
Grandma Kay
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