(Added, 9:20pm) I am reading the comments that keep coming into HuffPo and I am completely blown away. So many parents, so many stories, so many people fighting for their kids. Take a moment to read the comments - 39 and counting.
The Intensity of the Huffington Post Fearless Voices Comment Trail
Last week I ran a post on Huffington Post called "The Crappy Life of the Autism Mom."
http://www.huffingtonpost.com/kim-stagliano/the-crappy-life-of-the-au_b_37742.html?p=2#comments
I knew the post would generate comments. In fact, I sent an engraved invitation to controversy and she (he?) came a knocking. I didn't anticipate the deep chord I struck in so many parents. Here are some of the comments -- feel free to go over to the post to read the others.
To the parents who feel like I'm helping them in some small way? Thanks. To the parents who really dislike my voice, my writing, my approach? I'm happy to listen to you too. They don't call it FEARLESS VOICES for nothing.
This post brought tears to my eyes! I am the mother of 3 autistic boys and this post amazingly hit home. I can relate to what she says. Another cliche that always seems to rattle me is when people say.."God will only give what you can handle." I'm not angry with God but do people actually think that statement makes my life any easier?
From one autism mom to another, thank you for making me laugh today. I hope it helps to know that others understand where you're coming from all too well. Luckily I'm having a day where I can see that my son is a veritable pastiche of Bertie Bott's Beans -- both raspberry and booger. And that's ok for today.
You have very adeptly described a situation very to similar to the one at our home and at the home of my twin autistic nieces. In addition to the crapisodes, we have screaming fits, chronic pain, insomnia binges, and thrush, among many other "neurodiverse" characteristics.Thanks so much for telling the truth so bravely and boldly!
Yes, Kim, let's expand our vocabularies, starting with "neurodiverse". It has nothing to do with not helping our kids, or preventing behavioral change. Your characterization is crappier than the baseboards in your bathroom.Now let's talk about "recovery". Autism is a lifelong, neurological condition, but that doesn't mean it's degenerative. Your daughters will get better through education, parental love and acceptance, and the normal maturation process. Chasing magical cures is a distraction, and can actually interfere with real recovery. Our kids need rational, thinking parents, not shrill dingbats. You're better than that.
I'm sorry you choose to highlight the deficiencies in your child for the world to see. I can't help but think that you are a bit self centered. When was the last time you tried to engage an autistic adult in conversation?
I responded to that last comment by telling the person that I have recently made friends with an autistic adult in my town. She works in my grocery store and sings in my church. She's a delightful young woman who gives me tremendous hope for my own girls.
As always, I'm thankful to the folks at HuffPo for allowing me to post on their site.
20 comments:
This is so terrific. Thanks Kim.
That first comment about God is right up there with the "I'd rather be dead than be :" choose one "incapacitated, mentally challenged, paralyzed, etc."
So obtuse.
You own a grocery store and a church?
George, must you follow me around? Yes, I live in Kimitania and I own everything. It's a Kimocracy and I am queen of the kimdom. Any other questions?
Nope, just an observation - the train wreck metaphor is gone from your header. Nicer!
I have a cousin with epilepsy, and it irritates me to no end when I hear random strangers attemtping to make my Auntie feel better about it.
Doesn't Miss Snark advocate the use of a clue gun? Obviously, more than just us struggling authors need a hit from it once in a while.
have you considered writing lessons? taking not giving.
George (as I shall call you) thank you for the kind compliment about the revised intro. You are detail oriented, aren't you? A wonderful trait. Right now all of my money goes toward helping my children learn basic skills. Should I find I have a bit left over, I plan to get large breast implants, a Japanese hair straighening treatment and perhaps, as a lark, titanium knees. I fear there will be little cash available for writing lessons. Enjoy the weather.
Kim,
My father-in-law's house is haunted, and the family named the ghost George. (no kidding)
I find the irony quite hilarious.
I'm glad you appreciated the sincere compliment. The second anonymous is someone else.
-george
Writing Lessons? Kim, let me be (apparently) the first to tell you the piece was very well written.
Shrill Dingbat? When I try to imagine what a shrill dingbat might be, the person that comes to mind is the one who made the comment.
OH MY GOSH
Kim!
What's with these anonymous posts?
I always love someone who is proud of their opinions and signs their name to their posts. It's really the fair thing to do you know...
Oh er sorry anonymous...
It's just George. George Glass. That's OK. I've stopped using Lubriderm to thicken my skin. No problem.
I know I should be laughing at your responses, Kim...but I am.
I'm a terrible person.
You go, girl!
What's with the "shrill dingbat" individual? Does he/she/it think you're not already loving, accepting, and loving your children? Unless his/her/its idea of acceptance is encouraging little Peanut to use poop as a paint (Because there's no bacteria in poop if it used for artistic purposes). I almost made an account to comment, but then I realized no one else was commenting on the other commenters. I suppose I'll have to keep my claws to myself.
I haven't read the post but I have opinions nonetheless!
I'm pretty sure God isn't a man in the sky doling out shit to the toughies who can handle it.
Raising a kid on the spectrum (or three in your case) is HARD work. No one has lived in your identical shoes so they are ignorant to judge you for how you feel (and probably in some pretty hot denial about their own feelings).
Write your truth and don't give a rip what anyone else thinks.
You write with great humor and obvious love for your children.
Kim, I have to say I'm in the middle on this one. As someone born legally blind, I have more than a little idea about the pain parents can unknowingly inflict.
Reading the post in question, I suspect you really do love your daughters. On the other hand, when they are finally able to read what you wrote, you'll no doubt find you dealt them a pretty deep wound.
But, having recently seen clips from a video called "Autism Speaks" where a mother airs sugar-coated venom against her daughter, there are obviously parents out there doing a much worse job. With such a horrible example to hand, I suspect you sincerely never thought what you wrote could one day be hurtful to your daughters.
I wonder if the boy in Missouri who was just found after four years will ever regret his mother's non-stop cries to find him? What if she spent the last four years trying to HUMANIZE him from a mere "lost" statistic to a real live boy worth finding. And if, in doing so, she described how he wet his pants at his first slumber party. Or sucked his thumb until he was 9? Would he remember that she never gave up on him or that she embarrassed him?
My friend, that's a chance I'm willing to take.
Thanks for your comment. And welcome to my blog.
KIM
Wow, Kim...you sure know how to win friends and influence people! LOL!
I tell ya' girl...you just keep on pushing forward. None of the naysayers know what your life feels like because they haven't walked in your skin. I say "your skin" because apparently there's quite a few walking in the same shoes.
I like your voice in your writing, I can feel the deep emotion that you feel. I can feel the frustartion and the pain. Keep putting it on the little rectangular screen. It's very cathartic and it will keep you sane!
For laughs...come over and visit me as often as you wish. I'm here for ya!
just discovered your blog, and I only have one quick comment. You compare autism to "Bertie Botts' Beans." Specifically, you said that "Some autistics...can speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits." This is a misrepresentation. Some of the autistics that write blogs *can't* "manage their autistic traits," but *still* manage to communicate and live fulfilling, happy lives. Just to take a few examples, there's the woman who writes this blog: http://ballastexistenz.autistics.org/, the man who writes this blog: http://griffs-grumbles.blogspot.com/2007/01/fundamental-disconnect.html, and hundreds of other *adults* who are LIVING with autism, *not* trying to eliminate it. I think the big difference here, is that they are ADULTS, and your girls are young yet. Give your girls 10 or 20 years to learn and mature, and even if they haven't mastered potty training yet I bet they'll be writing blogs too. The ND movement isn't saying you're "disrespecting (your) kids by trying to help them," its saying that your kids need both help AND acceptance as autistic individuals!!!! Autism is not an either-or disorder. The kids who need help 24-7 (the "ear wax/vomit/dog poop" kids, to use your terminology) are the SAME people who grow up to be functioning adults who "speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits." Some are more successful than others, but it is 100% possible to be both fully autistic and fully successful. Your girls are just kids -- don't give up on them, NEVER give up on them -- and *please* don't assume that the ND movement is encouraging that. I can only speak for myself, but as a proud member of the ND movement, giving up on them is the *very last* thing I would want for ANYONE on the autistic spectrum, no matter their flavor!!
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