Blog Roll and Blog of the Month

I've been doing some organizing here. Apparently it's easier for me to clean up the blog than it is to clean up my house. What am I saying, "apparently" ? OF COURSE it's easier.

I've created a new page up at the top, for my blog roll (are you supposed to capitalize those words? Blog Roll? Or is it Blog Role and we've all just been getting it wrong all these years?). The sidebar was getting pretty long and I wasn't adding anybody new to it because it was too messy, and so.... voilà! A new page! (When you look at the wiki page for the word voilà you will read "here's the cheese," but in French).

So, if you guys wouldn't mind popping yourselves over my Blog (Crescent) Roll page, see if I've put you in the correct category and also tell me if you're not on there and you should be. If so, PLEASE EMAIL ME at jillsmo at gmail.com. PLEASE do not leave it in the comments here, because your blog will probably not get added that way. I'm telling you... it's all about organization. I use my inbox as my to-do list (I have three completely separate to-do lists, by the way) and if I don't see your request in my inbox, your request will be inadvertently advertently on purpose accidentally completely ignored. Is advertently a word? Blogger thinks it's not, it's got that obnoxious red underline.

Anyway, like I say on the Blog Cinnamon Roll page, I took everybody's buttons out of my sidebar, but I don't mean to cut you all off or anything. So, I've decided, in true blogger-egomaniacal fashion, that once a month I will "feature" one of you in my sidebar. See, apparently I think I'm cool enough that me featuring you will make the world a better place, or something. But, I mean... I get a small around of traffic (at least on the days when I post something *rimshot*) so I figure... why not? (I really didn't need to mention the amount of traffic I get, I really just wanted to use the word "rimshot" in some context). Let's let you guys get something out of that, too! Not that I actually get anything out of it. But that's not important right now.

And so, without further adieu (when you go to the Wiki page for the word "adieu," you learn nothing of interest), this month's Featured Blog/Blogger is ....

Tina from Not Just Another Mother Blogger.

and here's why....

I've known Tina for years; long before either of us were bloggers, and. I. love. her. And that boy of hers? Well, I never use the word "miracle" in any context other than to talk about free concert tickets, but that boy of hers is a miracle, and. I. love. him.

So, for the month of August, please visit Tina's blog. I put her actual button in my sidebar, even though I really prefer the button she uses on her Facebook page. I think the reasons for that should be rather obvious.....

In case you're wondering, I have absolutely no idea how I'm going to pick blogs from month to month. So.... yeah.

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On Autism and the Colorado Shooting: An Open Letter to @JoeNBC and @msnbc

This is a wonderful letter written by my friend Rachel Cohen-Rottenberg in response to Joe Scarborough's remarks about the Colorado shooting and autism which linked autism and mass murderers.

Rachel has also created a very successful Change.org petition, which you can see and sign here.

This letter is reprinted with permission.

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Dear Mr. Scarborough and MSNBC:

Nearly one week has passed since you, Mr. Scarborough, made the false and unsupportable claim that most people who commit the kind of violence seen in Aurora, Colorado are on the autism spectrum.

Your statement was both prejudicial and factually incorrect. Not a single mass murderer has ever been diagnosed with autism. Not one. Moreover, there is no evidence linking autism to premeditated, criminal violence. Absolutely none.

You have not set the record straight. Your employers as MSNBC have not set the record straight. Why is that? Journalists have an obligation to provide accurate information and to issue a retraction when they are in error. It’s really quite simple. What has gone awry at MSNBC that no such retraction has occurred?

It’s not as though, in the past week, retractions and apologies are without precedent. The president of ABC News has issued an apology for Brian Ross’ irresponsible statement that the Colorado shooter was a member of the Tea Party. Why has MSNBC not followed their lead? Why has MSNBC failed to retract and apologize for an equally incorrect and potentially damaging statement?

Many of us have spent years in the trenches educating people about autism, dispelling myths, working toward acceptance, and advocating for inclusion. Many of us have spent countless hours worrying about what will happen to people on the autism spectrum — the children coming up, the young adults beginning to make their way in the world, the older people dealing with a lifetime of rejection — in a world full of so much negative and false information. Many on the spectrum have borne the brunt of physical violence, bullying, and shunning. Countless family members and friends have watched their loved ones bear it.

And all of us — all of us — have cried bitter, bitter tears over a world that does not see people on the autism spectrum as fully worthy of the rights and protections that most people take for granted.

And yet, through our tears, we keep trying. We keep building. We keep working.

And then you come along, Mr. Scarborough, with both the privilege and the responsibility that come with reaching millions of people, and you utter falsehoods that have the potential to undo the progress we have labored for so long to achieve. And you did it at a moment at which the nation was wounded and our hearts were bleeding — a moment at which we were hungry for answers.

And you gave America the wrong answer, Mr. Scarborough. You made a group of innocent people the representatives of the horror wrought by one man.

You can go a long way toward healing the damage. You can take responsibility for yourself and for your words. You can issue a full on-air retraction, one that will reach millions of viewers, and you can clarify that autism does not in any way, shape, or form predispose people toward the kind of heinous violence perpetrated in that movie theater in Aurora, Colorado.

And if you don’t take responsibility, Mr. Scarborough, your employers at MSNBC certainly should.

Over 10,000 people have signed a Change.org petition demanding a full retraction, and the numbers are growing. They are outraged, and rightly so. They know an injustice when they see it.

Listen to them. They are telling you what you need to know. Please fulfill your professional and ethical obligations. Set the record straight.

Sincerely,

Rachel Cohen-Rottenberg


© 2012 by Rachel Cohen-Rottenberg

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He tries to lie, but he's just so adorably BAD at it

The other day I'm sitting in my office when Child 1 enters the room. Very very obviously trying to conceal a bag of chips underneath his shirt, he asks me if I can help him find the scissors.

Scissors? Gee, I wonder why he needs those? Perhaps to open a bag of chips, do you think? So I ask him "Say, Child 1, what's that under your shirt, there?"

"Nothing, huh? Because it kind of looks to me like you've got a bag of chips or something under there."

He is so fucking adorable.

I gave him the scissors.

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The Dive Bar Welcomes: I don't know, some chick

Hey, been a while, right? Do any of you even know what the Dive Bar is? Here, read this and find out. In the meantime, take it away Mystery Lady!

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The letter I wanted to write to too many people in the Down syndrome community:

Just because both of our kids have the same amount of chromosomes doesn’t mean we have to be friends. It doesn’t mean I have to like you, your blog, or even your kid. I don’t feel like I have to be friends with every parent whose child has 46 chromosomes, why would it be different for kids with 47? If we’d be friends anyways, fantastic. If we can share common heartaches, triumphs, goals, great. But this isn’t the same.

Why? Because you are HORRIBLE to be around. You are a first time parent of a child with Down syndrome. It’s the most dangerous combination, I think, in all of parenthood. Because you think you can tell EVERY OTHER PARENT of a child with Down syndrome that they are doing it wrong because they aren’t doing what you’re doing.

Guess what? Fuck you. You LOVE to shove it in people’s faces and straight down their throats that your daughter/son is doing SO WELL. You’re not doing it because you’re proud of your kid. You’re doing it because you’re proud of YOU. You wouldn’t ask when my kid first sat up or whatever only to follow up with , “Well, my kid did it x amounts of months sooner, so…oh, it must be because you weren’t able to get enough therapy. Oh, you could have but didn’t? Why wouldn’t you? Don’t you want her to be her very best?”

I do want her to be her very best. But it’s not a fucking race. You’re taking away what this child was sent here to do: To remind you that it’s okay to not do everything the same as everyone else. To slow down. To enjoy every moment.

And what’s more? I don’t have it in my sanity to do four sessions of PT a week, 2 sessions of OT and ST. I have several other kids! You have ONE KID. You don’t work. Give me a fucking break. And what’s more? It’s going to come out in the wash. I work with my daughter. She gets therapy. She doesn’t need to be forced into walking or talking when she’s not ready.

And then there’s your blog. Your blooooggg. The blog you think everyone will just love because it’s full of pictures of your kid and how fantastic they are doing in everything. Do you realize that people don’t think you’re so great because of all the shit you post? They think you’re obnoxious. If they’re anything like me, they’re completely sick of you talking about how wonderful you are.

And stop telling me what I can and can’t blog about. The next time you dare tell me that it’s my fault if someone aborts a baby with Down syndrome because they read the REALITY of it on my PERSONAL BLOG I’m going to just lose it. On you. I’m sick to death of people thinking that we all have to be happy about the Down syndrome every minute of every day. I’m not happy about my typical kids every minute of every day. If you want me to treat my Down syndrome kid like any other kid, let me. Because I yell at my other kids and call them assholes when they’re being assholes. If someone aborts because I said it’s hard, they probably weren’t ready to be a parent anyways.

And for crying out loud, I don’t think you’re a badass because you told someone off for not using “person first” language. In fact, I think SO MUCH LESS of you. Why? Because you didn’t know about person first language before you had your child and now you think EVERYONE ELSE should? Do you think you’re doing good to the Ds community by being an asshole? They’re not going to come to the next Buddy Walk because you told them they’re ignorant. They’re probably going to key your car.

You see your child as your ticket to fame and that is wrong. You see it as a way to force people to associate with you, and that’s sad. I’m not going to do it anymore.

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Number 20!

SHAMELESS BRAG

That means that of all the people in the entire world who have sung this song on Rock Band, I rank (almost) NUMBER 20.

Damn straight.

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How we put on sunscreen in my house

This post is for Nicole, who said in the comments of yesterday's post "I need your light-hearted, Fuck it sometimes posts with the great stick figures and such to get me through the sometimes crappy job of being a 'autism mommy'." I don't actually know you, Nicole, so I don't know how to find you and tell you to come and see this; hopefully you'll just happen by!

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Power?

When Child 1 was first diagnosed, the pediatrician told us, in a nutshell "he has PDD-NOS. It's on the autism spectrum but it isn't autism." As a result, I spent the next 9 months in a complete state of denial. "He's on the autism spectrum but he doesn't have autism," I told myself. This meant that I didn't need to investigate ABA, or any kind of treatment options that the school district wasn't offering me. At my first IEP meeting, I happily accepted everything. I had no idea what I was doing, and after all, these guys are the experts, right? So, great! This nonverbal 3 year old, who is still in diapers, should attend a special day pre-school for 3 hours a day, and that's all. What the hell did I know? I thought I did good for him.

It was only just after he turned 3, and started scripting, that my denial was shattered. He was obviously autistic, and I needed to get off my ass and figure out a way to help him. So, I hit the "books" (internet), and found him a program. I found myself an advocate and I convinced the district to make it all happen. We started our home program when he was 3 3/4 and there were immediate results. Things got better.

Today he's 10 and he's awesome. Totally verbal, super smart, (almost) always happy, and the sweetest, kindest, gentlest person you could ever meet. Every teacher or tutor I've ever had has told me "I wish all my students were like him." He's a joy to work with and to be around, and I can't take credit for all of that, it's just his nature; it's how he was born.

I know that my experience with autism has been much easier than that of some of my friends' experiences. He has no behavioral issues, he has no meltdowns, at this point he has very few sensory issues; he's actually much easier to parent than his typical brother. I also know that I am lucky that this is my experience. I am very much aware that many, many other parents have not had it this easy, and never for a second do I take this for granted. I consider it, now, my personal responsibility to give back to the autism community as much as I possibly can. So that my experience can help others; so that other parents won't feel so alone. I do this online as well as in "real" life, where I help parents in our district navigate the system and get services for their kids.

Here in cyberspace, however, there’s a war going on. It’s about autism parents vs. autistics, and ironically I’ve seen some of the worst, most patronizing behavior coming from my fellow autism parents on behalf of autistic people. I’m not interested in participating in a political war, though; politics frustrate and anger me. I can’t even watch the news without getting pissed and I certainly have no desire to fight a cyber war that has no end in sight. My instincts in all of these cases tell me to find a middle ground, but that’s never going to happen if I’m the only one who thinks that.

My friend Elise who blogs at Raising Asperger's Kids recently wrote "one thing I do notice in the autism community is that someone somewhere decided who the leaders are and who they are not." I know who the leaders are, and I am not one of them; the “leaders” have shunned me. I'm not politically correct enough, maybe? I'm too honest about facts and feelings? That makes sense; people don't like to hear the truth all the time, it makes it harder to maintain a morally superior distance from the rest of us. I don't even want to be a leader, although I have tried. I tried to help, I tried to create a dialogue, and it was an utter failure, but you know what? That’s okay; I'm okay with that, because it turns out that I don't have the energy or the interest to constantly argue about something, knowing that I can never win.

This war will not be ended by people talking about each other and not to each other. Long, well written blog posts which appeal to that particular readership are all well and good but unless these two different sides start talking to each other, this shit will never end. And I tell you now that I'm not interested in talking about this unless I'm talking to somebody, so unless somebody wants to directly engage me in a dialogue, you will not be hearing from me about this issue again.

My job here is not to “fight,” but to support. I want to reach out to as many autism parents as I can and say: you're allowed to grieve, you're allowed to be angry, you're allowed to have feelings, you're allowed to say "this sucks." Because I will try to help get you through this. And I will give you as much free advice about navigating the school district as I possibly can. And I will give you a place to speak about how you're feeling, free from judgment, free from criticism, free from the "thought police" which tell you that your feelings are bad and you should feel bad. Life is messy, it can be ugly and mean, and to be told that you must consciously repress your feelings about it is just wrong.

In conclusion, I'm going to quote my very good friend, Dawn, who sums it up perfectly:

In a world in which we are facing constant judgment from Neurotypical parents, to hear we are now facing it from our own community as well is exhausting.... I'm tired of being told i am a crappy parent because my child doesn't "behave" as others think he should, and i'm tired of being told i am abusive and a crappy parent if i don't say the right words.... honestly--i'm done with this discourse. Imma worry about my small family group and the health and well-being of my own kid. I no longer have the desire to be held accountable for the crappy parents other people have had. I am not perfect. and while i hold my son and myself to difficult standards of excellence, i do not expect perfection. And i'm not going to argue with someone if i fall short of perfect-- as humans are wont to do.

I've got your back, Dawn, and I know you've got mine. We're in this together, after all. I wish other people would realize that, too.

Edit: I'd like to add that if anybody has a problem with anything I've said, please tell me. Let's talk to each other, not about each other. If you don't want to put it in the comments, you can email me at jillsmo at gmail.com

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The funniest thing I've seen all week

This is the birthday card that Child 1 made for his brother. I don't know what it means, I'm not even going to try to analyze it. I just think it's hilarious. (I obviously changed it slightly).

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"I wish he was normal"

I got a message on Facebook the other day; somebody was thanking me for my honesty. She said that she had spent some time with an NT kid and the thought had crossed her mind about how cool it would be to have a "normal" kid. And then she felt guilty for feeling that way about her own child. And then, she says, she thought about what I would say... and she felt better.

Okay, first of all? Wow. The fact that I could have that much impact on somebody whom I've never met blows my fucking mind. Seriously, blogging? Because... wow. And it made me think about what I'm doing here, as a bloggerish-type person, and what kind of responsibility I might have to my readers, most of whom I don't even know. I have people thank me all the time, for "saying what they can't," for saying what they feel but feel guilty about expressing, and I'd like to take this opportunity to say some more stuff that people might be thinking but are afraid to say.....

Sometimes I look at Child 1 and I think "I wish he was normal."

Yep, that's right, I just wrote that.

I love that boy; more than my own life. He is beautiful and wonderful and smart and perfect just as he is, and I love him so fucking much. I spend a lot of my time fighting for and defending his rights as an autistic person but sometimes? I wish he was "normal." Because his life would be easier if he wasn't autistic. Because my life would be easier if he wasn't autistic. Because there's a lot of hardship and pain headed our way, in addition to the hardship and pain that has passed by us already, and everybody's life would be easier, in general, without hardship and pain.

I just wrote that down for the world to see, because this is the truth; this is what I think sometimes. And it doesn't mean I don't love him or accept him, it just means that this is what I think sometimes. And there's nothing wrong with that, because the thoughts that go through my head are nothing more than that: thoughts. What's important is what I do with those thoughts: how I act, how I treat him, how I treat the world... how I treat myself.

See, the thing is, you can't fault yourself for your own feelings. Whoever you are, whatever your circumstances, the truth is that you feel what you feel. Feelings are normal, they pass through your head and throughout the course of the day you may have a billion of them. That's what human beings do, you can't stop feeling things any more than you can stop being a human being. What's not okay is anybody who tells you that you're not okay for having feelings. So I'm here to say that, whoever you are, if you occasionally look at your kid, or yourself, and think "I wish s/he was normal," that's okay. It's okay to think that. It doesn't mean you don't love your kid or yourself, it just means that's what you think at the moment.

And to anybody who would tell me that I'm part of the problem, or I'm helping to keep autistic people marginalized, or I'm personally offending you by saying this? First of all, this isn't about you, this is about me. You don't get to tell me that my feelings are wrong any more than I get to tell you that your opinion is wrong. Because they're both right. They are what they are. And the sooner that we can all learn to accept each other for how we feel and who we are, the sooner we can make this world a better place for you, and for my kid. And that's what I'm trying to do here.

So, thank you to the person who wrote to me on Facebook. You have impacted me more than you can ever know, and I hope that I can continue to make you feel better about things; to help make you feel normal. I'll keep trying to, anyway.

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Just makin' my purchases

The kids are at camp for the summer; they're both at the same camp this year (not like last year) and one of Child 2's friends is going with him. I've been driving the friend to and from camp every day; it's no big deal, I'm going there, anyway, it's easier for his mom to drop him at our house every morning and he lives close so I just bring him home in the afternoon. This fact will become important in a minute.

Wednesday was a busy work day for me; I had back to back clients all day and then I had to rush up the hill to pick up all the boys from camp. I finished my second client and realized that I had about 10 minutes to spare, so I decided to go to Trader Joe's to pick up some necessities.

So, I park and jump out, and I go into the store and don't even get a cart or a basket, because I'm going to be so quick. I grab my first two necessities: a bottle of vodka and a bottle of wine, and I head to the other side of the store to get the ham and the Mac & Cheese.

I'm on my way over when I hear a little voice say "Hi Jill!" and I look over and I see the little brother of Child 2's friend. The friend who is at camp with my kid right now. The friend who I'm about to go pick up in 10 minutes. And HEY! There's the friend's mom! Buying milk! And here I am... holding a bottle of vodka and a bottle of wine.... with no basket.

I literally stop in my tracks in mid-stride, and I'm sure I looked like a deer in the headlights. Like this, probably:

and I say very awkwardly "oh, hey! Yeah, um.... just, uh.... makin' my purchases! Heh heh heh." And she says something like "oh, have fun!" all the while we're both very much aware that I'm now on my way to pick her son up from camp. In my car. Not like I was going to drink any of it before I got there, but still.....

Awkward.

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Wordless Wednesday: Making lunches the #youmightbeanautismparentif way

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It's obvious my children love me

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Things I Find in my House: What is that... I don't even....

So, it's the 4th of July, the fireworks are done and the kids have gone to bed, and suddenly I look and I see this thing lying in the doorway of my TV room, right? And I squeal "OH MY GOD THAT STICK LOOKS LIKE A PENIS..... hee hee hee hee hee!!!!" and I run to find my phone to take a picture, because I knew you guys would want to see this penis stick thing that's lying in my doorway.

Except, while I'm bending over awkwardly taking said picture, behind me Hubs says to my ass "You realize you're a 41 year old woman, right?" So I say "HEY, FUCK YOU!" and then I fucking tackled him from the side, military style, and we rolled around on the floor fighting like they do in Buffy, and eventually I shanked him in the leg with a phillips screwdriver I found underneath the coffee table and then ran off into the night screaming about the wolves that were chasing me.

At some point in the story above I may have slightly strayed from the truth, but the specifics don't really matter, because OMG LOOK! IT'S A STICK THAT LOOKS LIKE A PENIS!!!!!!!

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Happy today! Yay!

I'm posting this from my new phone. I have no idea how it will look. I downloaded the Blogger app (ap?) and as far as I can tell there's no preview option.
Also? I'm hoping there's a picture attached to this post somehow. If so, I would just like to say that I think i can do better than 100.
Also? It's really late right now and I can't sleep for some reason.
Also I think I just added a location to this post but just so you know, that's not really where I am right now. I'm actuaqlly at my house. So don't worry.
Also? I don't know, but tell the people you love that you love them, because one day you'll all be dead and you need to make sure they know how you feel.
Also? 
No that's it. Happy whatever today means!!!!

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