Stacey - How about..I'm sure he will get easier when he is older. Or...you're a saint, I wouldn't be able to do it. ( I often wonder 'then would you leave your kid on the street???).
Me - And often said with deer in headlights look, internally thinking "How do you do it? Living nightmare! Please god never let anything so bad happen to me. That poor, poor girl" Sympathy look in eye, pity, ew.
Catie - "God doesn't give you more than you can handle."
Me - And this spoken to a woman with twin boys with Fragile X. I've proud you haven't punched anyone. Yet.
Aimee - "But he is SO CUTE!"...Like in spite of the fact that he is significantly impaired, I should appreciate the fact that he is easier to deal with because he isn't Quasimodo.
Me - "I'm sorry." Why, did someone die? Don't be sorry! Pity for me, my kid? No thanks!
Leia - How about mentioning the disabled adult who bagged their groceries recently? I could go on and on.
Me- "I knew a retarded person once." "Yep, I used to watch that show with Corky! Great show!" Ummm, thanks??
Me - I used to get this statement more, but as O gets older I don't get it as much "But he doesn't LOOK like anything is wrong with him! I'm sure he'll be fine!" I would stand, smile, and shake my head, thinking "Oh, would you like to watch the slow bomb explosion WITH me???" Cool! No, you're right, no big deal! Thanks for the 'advice'.
Aimee - There was a whole long post that people kept responding to on one of the facebook FX pages that asked just this. What was the stupidest thing anyone has said to you???? You could probably paper a bathroom with the amount of stupidity that was shared.
Aimee - "Only special people have special children, " how about a little fucking ordinary around here, we are tired of "being special!"
Me - No kidding! We are 'blessed' and 'special'!!! Tell me when it is going to start feeling like that! Why can't I be 'blessed' to be 'born with a body that won't quit" or 'lucky enough to become lottery winner at age 30?' Blessed my ass. Not to mention - I get a special award for birthing a child with special needs? That's ALL I needed to do to be appointed to automatic martyr status, push a baby out my vagina and I am sainted! Well, losing that rep fast....
Mary - "He is lucky to have you"
Me - aka "Better you then me, suckah."
Mary - The main thing is that people with absolutely no experience with kids with speical needs are handing out advice. Thanks anyway, but they have no concept of what it's like or who they're talking to. We've been though hell and back and they're telling us that God has given us what we can handle. Go fuck yourselves! ;)
Mary - Oh, and "The trip to Holland" story should definitely be on the list of what not to offer a newly diagnosed parent.
Me- I love when we get ranting on this. It cracks me up. Just last week I had an email from and ex boyfriend "You are the BEST person to parent Owen!" I wanted to ask "Yeah, you dodged this bullet eh????"
Aimee - There is another story similar to the Holland thing, but actually good, funny. I read it a while ago, can't remember what it is called. I'll see if I can find it...Something Mexican??
Me - I had someone say to me "Well, at least preschool is free...." Oh yes! That is right! Never mind, this is all SO worth it!!!
Lola -Any time a parent of a typical child starts a sentence with "Oh, YOU won't have to *worry* about this but my .... "
Me - Hadn't heard that one though. People better not say dumb shit to me, I'm warning the universe now.
Me - I'm hoping to establish a rep as a huge cantankerous bitch. There yet?
Lola - You've got the attitude nailed, you just look too perky...
Me - That's my other method, distract them w/hotness. Be scared of my wit and overwhelmed by my beauty and you will not notice my son's Fragile X! Completely reasonable.
Aimee - Just FYI...You can quote me AND use my real name...I am an unafraid bizitch! I'd rather like it if people crossed to the other side of the road when they saw me coming, makes a girl feel all toasty inside!
Stacey - You can use my name. I would definitely go for the hot and bitchy routine to distract. I've been trying to perfect it for years (still got a ways to go, not quite working)...
Stacey - Ok so here is one more that I cringe every time I hear it. "Well at least you have another son that's normal." This is the hardest for me to hear.
Me - Right, one kid is 'disposable'. Try telling that to a parent who has lost a child. Morons.
Aimee - Stacey, people are dicks...just sayin! Someone asked me once if Nathan had Aspergers...I said "ha, I fucking wish", and then I turned and walked away. Never forget ladies, that you don't need to stand there in shock and let jerks talk to you that way.
Me - Aimee is beyond awesome.
Aimee - Another one I heard was "at least it isn't Down syndrome". Little do they know, asshole, it is worse than Down syndrome.
Me - I've noticed several of O's school friends with Down's have much better skills and talk much more than he does. I wonder how many parents have wished their kid was as advanced as kids with Down's syndrome?
SUGGESTIONS - WHAT TO SAY TO PARENTS WITH KIDS WITH SPECIAL NEEDS!!!
You look gorgeous.
Can I babysit sometime?
You look GREAT!
Owen is AWESOME! I love that kid!
You haven't aged a bit!
You have a BEAUTIFUL family!
You look SO FANTASTIC! I love your outfit!
Let me buy you a drink! Or three!
Your blog is SO AWESOME! So well written, and moving! Here is my uncle's number, he is a famous literary agent, I've already given him a heads up!
You look FABULOUS, bitch!
I also love when people harass me, don't take my shit, or are mean to me. I LOVE getting treated like a normal person! YAY!
Let me amend this by saying - we DO appreciate ALL our friends and family. We need you. What we can say to each other reflects our deepest fears and paranoid thoughts, our 'broken' status has made us eternally self conscious and guilt ridden, while at the same time we are all fighting desperately against it, to retain our sense of ourselves as women not victims. We can say our inside thoughts to each other and it's a relief .
You hear people say "thanks for your support" and it sounds like meaningless hyperbole. But when you are on the receiving of not pity, but love from your peeps, it fills your heart. 'Special need' moms could never do it without support - extra support - and it really does take a village to raise a mom! My friends and family may not always understand what I'm going through, but more importantly they love me, and 'get' me, and love Owen and my family. I know I need 'extra' special care and help, myself. I NEED my friends and family, maybe in ways they don't need me. Because I need them to be there for my kids, which is really what it is all about.
There is no one who is exempt from the above statements - all of our loved ones and friends have said them - but what we know is that they are said out of love, and support, and care, and regardless of what is said, their support is what matters.
Just don't say the r-word. Then you are dead to me. xoxox