xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Looking for input: #youmightbeanautismparentif

Thursday, December 8, 2011

Looking for input: #youmightbeanautismparentif

Recently there's been this hashtag on twitter: #youmightbeanautismparentif, where we get to say awesome things like "#youmightbeanautismparentif you're heading to the doctor to see if your foot is broken b/c it was in the way of a chair thrown mid-meltdown" (from Amy) and "#youmightbeanautismparentif Your heart aches with the meltdowns while others only see a 'behavior problem'" (from Laurie). Naturally most of the things I threw out there were sarcastic, but occasionally not. And the thing about twitter is, I've got 2500+ followers, and not all of them have experience with autism, so oftentimes I would get a response along the lines of "that's not autism specific, that's just a kid thing."

That kind of bugged me. And I'm really sorry to my friends who have said things like this, I hope you don't take this personally, and please don't apologize for it because I'm pretty sure you mean well, but the thing is... it's not the same. It may be a "normal kid thing" to constantly lose your jacket at school, but when my autie kid does it it's a completely different experience than when my NT kid does. And so I tend to get really defensive when I see people respond in that way.

So then I thought.... I shouldn't be getting defensive, I should be educating. After all, how much did I know about autism 10 years ago? I can't expect everybody to understand what we go through if they have no personal experience with it. And anyway, it's my (new) obligation as an autism blogger to inform and educate; after all, we change the world, right?

So, I am now looking for input from you guys. I would like to do a post explaining why these things aren't the same. I'm going to write about the lost jacket incident. Sunday has promised me a post about picky eating (she probably forgot. Sunday! Don't forget about that post about picky eating you promised me!!) If you have a kid or kids with autism, particularly if you also have an NT kid and can compare and contrast what has happened in your house, please contact me at jillsmo at gmail.com and add your story to the post I am compiling. Let's educate, not be defensive! And instead of getting annoyed when this happens, we can just point people to that post. If you need a topic, let me know, I have a list of those, as well, and if I don't get enough volunteers I will start recruiting people to write about specific ones. I'm planning to post it after the holidays.

Also: Just a reminder that the Autism Holiday Readathon is still going strong!! As of yesterday, Kate had read something like 2,400 pages. After only 6 days. Don't be intimidated by her brains and her beauty, though, because..... um.... Okay, I don't know why, because she's pretty awesome.



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Oooooooh! Let me go back through my tweets and see which ones got that exact response and I'll get back to you. I know I've heard it a few times already. Count me in!

XO,
@TwinsMa
My recent post Eyes heavy...
one of the best moments i ever had was with a friend--my son's BFF mama--as she watched me do something with Ben--i think i was asking him a question, to which i got no answer, and then a script-y answer, and then his head-shaking stim, which i always feel compelled to stop since he's knida knockin his brains around. And i guess i did it all with a great deal of patience and calm, still receiving no actual answer, and i just took a breath with him and then sent him on his way--prolly something i do a gajillion times a day. To alot of other parents this looks like worked up kid who's too excited to answer his mom. But my friend saw it and told me she "gets it" and appreciated how i dealt with it. ANd for once i felt vindicated. It was a little easier for her to see since her kid has some neurological issues of his own, but i know other parents may see that and just see a hyperactive kid. Typies just don't get it.
My recent post Dear Santa: What *I* Want for Xmas
omg I just had a huge discussion the the camera man about this. He said "but your life, seems so hard. Whats the hardest part of having autism a part of your life". My response was- The hardest part is society. Don't stare, don't roll your eyes at us because our teenage kids are acting like 5 year olds. Don't look horrified that this man sized child is flapping his hands and spinning in circles because he see's a sony product. I'm standing right next to him. ASK ME." I am determined to educate the world. Not CHANGE it, EDUCATE it. I don't want everyone to be AUTISM AWARE.. I want them to know that, this is our normal, and it's ok. I see elderly people look HORRIFIED at Tommy in public. I'm less apt to approach them, I usually talk extra LOUD to Tommy so they "realize" that he's special needs. I can't tell you how many times a week I get on the floor and explain to kids at the grocery store (one of the only safe places we go to) that it's ok. "i know he's doing really weird stuff. that means he's excited. he has something called autism". 99% of the time, the parents are EXTREMELY grateful. Sometimes, WE'RE the problem. We want the world to accept our kids for who they are... but WE (!!!!!!!!!!!!!!!!!) have to explain this to our communities. All of our kids are different. People don't know what autism LOOKS like. They know what the SIGNS are. Tommy has given the same WTF! look at a man in a wheelchair with no legs. Before he could say something inappropriate I stepped in and asked him if I could explain this to Tommy. He was more than willing to let it happen. The man, the best way he could, explained that his legs had bad owies and had to be taken off. He didnt SHOW tommy, but he let Tommy touch what was left of his legs, and we all moved on.. again I thanked him IMMENSELY!!!!!!! Let's stop getting so MAD at how the public acts with our kids without giving them the opportunity to UNDERSTAND it first.

Sorry I just whored your comments. Im very passionate about this topic lol
My recent post yet another day, in the life of home school
Oh Jill, give me any topic you want and I could write a book on it. The difference between my NT kids and my not-so-much-NT kid when they loose anything or plans change or can't find a shoe or lost a page of homework or misplaced a toothbrush or the jacket is not "right" or the food is not on the plate the right way or its not a hot dog without skin....OH SHIT. See what I mean??? Let me know how to help.

I talked to my shrink about this issue. Yes I have a shrink. She said its called Normalizing--what people do to make our kids appear more normal and less different. It's very insulting to both our kids and parents because by stating how "normal" things are, it takes away from whatever happened---meltdown, blowup, freak-out, whatever. Does that make any sense?
My recent post Birthdays, brats and just for fun--a little bit of snow.
8 replies · active 693 weeks ago
I have a shrink too!!!!!!! lol Her name is Ruth. I love that I get to say Dr Ruth lmao

Just thought you'd like to know that :D
My recent post yet another day, in the life of home school
YOU'RE. ADORABLE.
My Gynecologist's name is Dr. Funk *cross my heart*
My recent post yet another day, in the life of home school
My Gen Practice Dr's name is...Dr. Tramp. The first time I called the office to get an appointment, I thought, "Surely I didn't hear that right!" and I asked them to spell it for me. They laughed and said that it was just what it sounded like, T-R-A-M-P. And the Dr. is a female...I about died.
My recent post Mexican food....it's not just for Mexican's anymore.
Normalizing! I didn't know there was an actual word for it. It is insulting, but I don't think it's meant to be, that's why it's our job to inform.
And I think the reason it's insulting is that they'll try to make it seem normal...and then they'll punish us for it anyway.

It's taken me a long time to puzzle this out. Throughout my entire childhood and adolescence, people *told* me I was "normal," and yet *treated me* like I was defective and stupid. I still can't quite make the connections about how or why this particular brand of doublethink works, but people in my life were very, very good at it.
I wanted to put a divot in a friend's head when at a writer's group meeting, she said to the other members (and The Boy is now one of them), what a "sad story" The Boy was.

And this woman works with autistic adults.

We don't need your stinkin' pity, woman. Keep your judgments to yourself.

Oh, a topic about homework would be useful, I think.

Or one about friends (or the lack of same).

Or anger management (which we need in our house in a big way).

Or the stress of family gatherings, and why we don't stay long - and what happens when we stay beyond our welcome.

Just so many stories.
My recent post Mama Kat's Writer's Workshop - Point/Counterpoint: Snow
Jill,
Although I am just starting this journey I have already noticed so many differences between what I went through with my daughter versus the things we are currently going through with my son. I would love to write something, anything, my hubby's family seems not to get the difference and would love to help educate them and others.

Thanks!
Delana
My recent post Diagnosis
I would love to read these posts.

I did make a comment like that. Just trying to be silly, so I really hope nobody was offended. I was then told that the person's kid was much older than mine and doing the same thing. So learning the difference between when an autistic child and my child do something would actually be really interesting for me to read.

(Like what NT means...apparently I haven't been paying attention to your blog enough...)
1 reply · active 694 weeks ago
Yes, I was a part of that discussion, actually; it was the inspiration for this post, although now I don't remember the specifics. I know you didn't any harm by it, and I was not offended, but you're my friend and I like you, so you get a pass ;) I would like to teach you the difference, so that you will know, and then you can tell others.

NT = NeuroTypical.
LOVE it! Anything I can help with, I'm happy to! I'm constantly educating people about how the experience my son with Autism has is different than an NT (like his twin sister!) has.
My recent post The BEAUTY that is Autism
My son's severe ADHD overshadows his mild Asperger's, to the point that people have said they think it's all just ADHD and he's not on the spectrum. So there's that little bit of sunshine to deal with. If you still need contributors, I can write something about sleep issues or literal thinking challenges. Hit me back, yo.
My recent post Things I Learned Over My Thanksgiving Holiday
OH CRAP!! I started it but didn't finish it....off to do that now!
I don't have kids, but I would be irate if someone tried to say that it was just "a kid thing" when my hypothetical kid with autism was having a meltdown.
My recent post My Appliances are Against Me
i've heard that soooo many times! "every kid does that. why do you think she has aspergers? it's just a kid thing. you don't know because you have no other children." as if having an NT kid as well is the only way for a person to see the differences. as if her screaming, head banging, panting, hand/arm/lip biting reaction to minor inconveniences are just a typical kid thing. that's why all kids have self-inflicted bruises on their skin when math is hard or we have to change the order of our day.
My recent post snowflakes
Yesterday I was invited to speak to a room full of VIP's including the Governor (which is a different thing here in Aus to the US, anyway I digress..) about raising an autistic child. I started out feeling well prepared and confident, and as soon as I got to the work 'autism' I broke down. I realised that I am not even in touch with this whole thing myself. Had no idea those raw emotions were simmering away under the surface still. A parent who does not have a child with autism cannot understand. They just cant ,even if they try really hard. We need to cut them some slack. Yes they piss me off. But meh!
1 reply · active 694 weeks ago
fuck, word, not work. I havent stopped drinking since yesterday so I'm on self edit fail mode.
My recent post Aspergers versus DSM V.
This is such a great idea. We want to be educated. We NEED to be educated. We who do not have autistic kids can seriously cut down on our own unintentional douchebaggery if you, jillsmo, teach us. Can't wat.
My recent post Emotional Science
Connie Hammer's avatar

Connie Hammer · 694 weeks ago

What a great attitude about not getting defensive! That energy gets lost in the universe - education is so much more powerful. Everyone needs to understand about Autism because there will come a day (due to the continued rise in numbers) when those not affected by Autism will meet and have to interact with someone on the Autism spectrum - let's challenge them to be ready. As human beings, we often fear or are uncomfortable with what we don't understand and this is where education can make a difference. You are right when you say "I can't expect everybody to understand what we go through if they have no personal experience with it." Giving people strategies will help them feel more confident and less awkward about how to respond - what to say or do. I truly believe that most people mean to be and want to be helpful but their limited knowledge about Autism just doesn't cut it. So - YES - let's inform and educate because it WILL CHANGE THE WORLD!
I write about this a lot in my blog. Having 2 NT children who are a little older than my daughter. How I didn't understand why she was different and now how everything IS different. If you want me to contribute, I write a lot about how planning to go anywhere with a NT child is so much different with my 5 year old with ASD. Just let me know.
My recent post Firsts...
Ok , first off Why did you not use my "your kids have more vibrating toys than you do"????? Just kidding

I think as an autism mama we are wired to be defensive and advocate and be the voice our kids don't always have. We can't help it. Yes, some of our kids "issues" are those NT kids have but on a whole different level and way more extreme. Dealing with potty training of a 2-3 year old is way different than an 8-9 year old.

This hash tag has helped us all laugh at our lives, vent a little, bond a little and just not feel so alone in what we go through on a daily basis. I would never assume what someone with cancer or racial discrimination feels so i don't judge them or compare my issues to theirs. We all have issues, we all have problems. They are all so so very different. NT kids and parents of NT kids have struggles too, but again, different.

Bottom line, Unless you have a child with autism, shut the fuck up......yeah i said it.
My recent post Helpful Tips For Handling the Holidays From One Autism Parent To Another
I do not have an autistic child however; I have had the opportunity to witness and observe family and friends children and I agree with you. It is a lot different to deal with the same situation with an autistic vs na child.

I look forward to reading your blog!
Awesome idea. Lol I'm passing on the my mother encouraging her to write about "sleep issues" because if she hears one more time "well what I did with MY son..." she might go postal.

She told me so.

My recent post Target is the Only "Me" Time I Get
I've had to explain this to my family, co-workers, and friends. I made sure when I did my TEDxLincoln Talk to include a description of how and why a specific situation is different for a person/child with autism.

I had people come up to me after the presentation and say, "I had no idea....." It's one of those good old education processes. Still is hard to see the lack of knowledge though.

See ya on twitter! @mkosmicki
I've been thinking about your post a lot- I read it yesterday, but didn't comment.

My Bear hasn't yet been diagnosed with autism- he has lead-poisoning, but a lot of the ways that has manifested are similar to autism characteristics. So much that "lead-poisoning-induced autism" has been tossed around... as of right now, we're going through in depth evals to figure out exactly what is going on. But, considering he was basically booted out of private school for his behaviors... trust me, it's not just "normal" little boy behavior.

I try to explain to others the problems he has and the things that he does... and most come back with "sounds like typical little boy behavior." Well, I have two other boys- one older and one younger. And it's not typical. It's completely different. It's more intense, it's hard to control, it's hard to see the reasoning, it's hard to predict, it's emotionally draining for both of us. It's not something that is solved with a reprimand or a simple time out.

Anyway. Just here to say: I get it.
My recent post Things They Can’t Say: The Kir Corner
I have been thinking about this post all day, and just wanted to apologize if I ever offended you. I come from a background with a stepbrother who is older than me that can't talk, feed himself, wears a diaper, because he overdosed on baby medicine as a child. So to me, when I see you all making jokes with the hashtag, it seems like it's not that bad. And being a mother myself I know we all have difficult times. I don't mean to minimize what you're going through. I realize how awesome it is that you all have twitter friends as support. You should be able to laugh and cry, whatever you need to do, with people who understand what you're going through. I appreciate any edication you want to provide. And again, I'm sorry if I ever offended.
Hey, welcome to the daily experience of autistic people who try to explain what autism does to us! :) (Not that I'm pretending to know anything about how this feels when it's your children. I'm not. Because I've never had children.)

I had a hard night at work and so I've had a couple of bourbons. Just fyi.
id love to write for you. Deciding what to write may be harder! being light and funny... well.. that may be dangerous. One of the things that I get here are responses to when I state the obvious. "dinner is done" garners things like "ok" with absolutely no movement. My ASD kids say it because even after all this time they don't understand I am not just telling them the food is done. 16 years later my aspie is not just being defiant or obtuse. He is doing what he has been taught. acknowledging the speaker. he still doesnt get I mean "dinner is done, clear and set the table like you do every single night and have every single night for the last 10 years" where my NT kids might just say OK because they dont want to be bothered. oh how the list goes on and on
It is frustrating when people make blanket comments. Yes I get that "NT KIDS" do some of this stuff too, but none with the intensity,focus or lack of pragmatics that our kids do.
My recent post HEY YOU!
I could ask dumb questions and give responses from the non autistic world of the unimformed. It might help to educate people if you see how much we don't understand. Anything to help in your quest. But only on Sundays in December.
It has only taken me 3 years to finally read this but I am in. Filling out your fancy spreadsheet now...
My recent post Why?

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