Wednesday, January 11, 2012

What You Say VS. What We Hear, Think, or Suspect...

Me, the below posted in a private facebook room with other moms who have kids with Fragile X.   (I would like to apologize in advance to our friends and family, we aren't laughing with you, we are laughing at you.)
"I'm writing a blog about 'what not to say' to a parent similar to our dinner convo. Like 'you are blessed, i don't know how you do it, he's so lucky to have you, I'm sorry'. Any others I can use puhhleaze???"
Stacey  - How about..I'm sure he will get easier when he is older.'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? 


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


  1. Tou have such an amazing heart. You spend your days giving it away to others who need it. You are one FABulous bitch

  2. Thank you so fucking much!!! xoxoxo

  3. I Absolutely LOVE your blog! My son was dx 6 months ago and it has fuckin' blown us away. Your words are genuine and unapologetic. They are raw and the this whole new world of special needs really does strip you to your core.

    But there's one phrase you ladies may or may not have mentioned at your dinner that I would like to add to this post...."you know he really is so smart".."he'll be fine."..."look at how he knows it's his turn by saying me"....

    Are you serious? (I think to myself)..he's almost three with the same amt of words...Fuck!

    Thank u for sharing you and your gorgeous family with all of us!

  4. Thanks so much Katie! Oh yes, I LOVE the people that 'reassure' me HE WILL BE FINE! I'd say 'welcome to the club' but it's the club no one wants to join. I hope you have some support, feel free to email me!

  5. I understand most of the things, but I dont think "i'm sorry" is bad. I think people are meaning I am sorry ou are hurting.". Not "I am sorry you got stuck with this". I always say I am sorry when people go through haed times. Because most of the time I cant say I understand because I dont. If saying I am sorry isn't comforting then i dont know what to say

  6. Wow.. what a posting. I recently was forward this from several parents and really do not know how to respond. I am a parent and have several children. I am not sure how to respond to this blog.
    I respect this is your feelings. I believe anyone can say what they wish and if anything I see this as your own way of dealing with things.

    I guess what is concerning for me is the fact that if you continue to use the "r" word as your blog title it only shows people that you are open to using the word. I guess in my situation, i would not want to give a mixed message to my children who I have told that that word is not okay to use.
    Further my child with Down syndrome and autism is differnt then any other child with the same disabilities, and my other child that has many levels of needs is different form others. It would and is offensive if you feel that Fragile X is better or worse, I guess I look at it as all individual. Every child, person and family is different in how they view the world.
    In Ohio right now they are debating giving a young girl a kidney transplant because the hospital see's that as a waste to a child that is developmentally delayed.. I would be furious if someone was able to pick if my child lived or died because of a disability. Who gets to decide if your son, my daughter or son as a quality of life? Human beings are human beings. The "r" word and comparision if my child is "higher" functioning is not as important. They are all children.

    Kathleen, I would be careful who reads your information and creates a challenge to your world, as mine was once moved because the context i wrote.
    Best wishes to you and your son. I don't view him or any child as the "r" word and would not want their sibling to feel that I ever made it ok to write, verbalize, or ask if my child was a "r".

  7. If you read the asterisk part she is saying her son is what SOCIETY refers to (cruelly) as a "retard" - and that it is NOT acceptable.

    Is the name of my blog offensive to you? I hope so, because it sure as hell offends me. And it's what I would like to scream in the face of the many clueless people who casually use 'the r-word' when talking to me - it's become such a part of the American lexicon I hear it on a daily basis. Do you GET that it is my son you are talking about? My BABY? STOP IT! Spread the word to end the word...

    That is the whole point of it - to let people who think it IS Acceptable konw that it is NOT acceptable.

  8. I do understand the asterick. My thoughts are simply of concern. My concern is beyond using the " r" word that in this state we have changedc our state system from known as dmr to dds. This was done in Massachusetts by self advocates themselves. I am throwing this out because as i mention my word context once affected both my child and i when i used.

    Just offering a concern to be careful on...
    Say what you mean but be careful how you say it.

  9. I'd like to address this part of Anonymous #2's response...

    "It would and is offensive if you feel that Fragile X is better or worse, I guess I look at it as all individual. Every child, person and family is different in how they view the world."

    I'll skip the grammatical corrections, my gift to you, and get straight to the THANK YOU!

    Thank you, Anonymous Commenter #2, for once again reminding us of the party line. Parents aren't *allowed* to compare kids, ever. It's pointless because every child is a unique, precious snowflake! Parents of kids with special needs are especially not ever, ever, EVER allowed to compare kids...we are held to a higher standard. We have to be above it all, accepting well meant but hurtful comments without blinking, thanking God (or Allah or Satan) every day for the precious gift that has been given to us.

    Really, it *is* the party line because everyone says it, every single person I’ve talked to since I began to worry about my son’s delays…over and over, “Don’t worry, every kid is different.” “You can’t compare, every kid is different.” Hell, I give the party line to every single newly diagnosed parent I talk to and I give it to my friends when they’re stressed and need to maybe step back a bit. But, you know what? It’s not always helpful. Somehow, somewhere that party line became a rule that no one is ever ALLOWED to compare so we keep bitch slapping each other when it looks like one of us might be indulging in it when, in fact, EVERYONE DOES IT.

    The mom of the perfect little, blue eyed, blond ringletted, genius child, the mom of the perfect little, brown eyed, brown haired child with fragile x, the mom of the perfect little, green eyed, red haired child with down syndrome. We do it in our heads daily,sometimes hourly, because the unknown is fucking terrifying (sorry, Kathleen, for dropping the f bomb in your sacred space) and sometimes we just need to compare…to see if we’re doing better or worse or the same…just because we need to know where the hell we stand. We all want to know is my child going to be the one who drives or is he going to be the one who needs to live in a residential facility because he beats the hell out of everyone in the family? Wait, that last one isn't a worry for you? Lucky!

    Is fragile x better or worse than down syndrome? Probably not, both would have sent me into my own spiral of despair but here’s something to consider…when you look at my child, he looks like a typical child. There is no visible sign of his disability and guess what? John Q. Public holds him to that outward appearance of normalcy and he CANNOT live up to that.

    We are sneered at, we are stared at, we are whispered about everywhere we go because we have an out of control, devil child who should be taught some damn manners and maybe given a good spanking…what the hell is wrong with those parents? *If* I decide to give people an explanation, hoping for a little bit of fucking (oopsy, that’s twice!) goodwill from the judgmental assholes, I say fragile X and get nothing, not even the slightest flicker of recognition or understanding. Which leaves me with two choices, stand there and explain in detail what fragile X is and why he is acting the way he is or pay attention to my child and help him through whatever crisis he’s experiencing. Guess which one I pick?

    So, yeah, we compare our kids for a little reassurance that we’re doing OK, at least better than that poor schmuck, and sometimes down syndrome looks pretty damn appealing because at least then we could spend a little less time explaining and making excuses and a little more time focusing on helping our kids learn to manage in this crazy, chaotic world.

    Personally, I love that Kathleen is willing to say publicly what goes on in everyone’s brains, isn’t it nice to know you aren’t the only one to think the unthinkable thoughts? I think it is.


  10. The truth is no one knows what is better or worse in ANY child, or raising that child. Everyone in any given situation always thinks "the grass is greener" - but you only know what you know. I don't think she literally meant "I wish I had a Down Syndrome child instead of a fragile X child". I think that knowing what she knows about Fragile X and knowing what she knows about Down Syndrome, in her mind Down Syndrome would be easier to deal with. But she doesn't know - no one knows. As someone that knows Kathleen, it makes my heart hurt to see anyone question her words or motives, because as hard as she tries to put on the "fabulous bitch hard-ass act" she is actually a very sensitive, kind-hearted, compassionate woman who works full time talking to abused, neglected children (and adults), and sometimes she is the only person these children have on their side. She loves her children - but, personally, I think for what she does in life, I think she should have been given the gift of birthing babies that slept through the night at day one, eat all their veggies, and never quesion a word she says - but life isn't fair. She loves her son, she HURTS for her son, and she is still grieving the diagnosis. She doesn't sensor her words, her confusion, her anger or her emotions. This blog is for her as much as anyone else. And maybe because I don't have children labeled as "special needs" - I feel the need to protect her as much as she feels the need to protect her son - and the truth is, neither of us can do that

  11. Well Melissa i regret to tell you i do get having that kid in residential that beats my kids and family. I have lived in psychiatric hospitals and support my child in a location 7 hrs away. I am in a community that has limited support and i see how my child with down syndrome is understood quicker.

    And i have 5 children with trauma. So i do regret to tell you, i consider myself
    " one" of you as a parent. But dont hope, blame or wish my story on others but ...i guess in my story anger, frustration made me lose more than helping my children.

    Best of luck Kathleen and your group of moms. I hope you find your way together or alone.

    a mom to 8 children

  12. I'm certainly not trying to wish Owen was anything other than Fragile-X-Free. I'm commenting on the absurdity of my thoughts. People watch "Hoarders" and "Intervention" and "Law and Order SVU" to see insanity - believe me, I see enough of it and HAVE ENOUGH OF IT IN MY OWN DAMN HEAD.
    And if you think that's bad, you ain't heard nothing yet.
    I know all parents are doing the best they can - it isn't easy and it's harder for some, depending on all kinds of circumstances. You don't have to agree with someone's point of view, you just have to see it. Will this blog title come back and bite me? Oh yeah, already has. In the grand scheme of my life will it be any worse than what the X has done? Not. even. close.

  13. Having Lucy, I have heard a lot of these as well, but like you said at the end, most of the time its from famliy & friends and out of love. There are times in life when it is hard to know what to say, but I think our friends and family have the best of intentions. Don't hate me, but I like the "God only gives you what you can handle" & you know I like the Holland story! ;) You rock!

  14. Elisha YOUR Holland story may have altered the way I feel about the IS Lucy! How could it not? Tell it tell it!!!!!!!!

  15. I could type for days about Miss Lucy! I would need my own blog! ;) glad to hear I may have swayed you! & someday I will really get my "Holland" tattoo in purple, Lucy's first color word!


Note: Only a member of this blog may post a comment.