xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: January 2013

Wednesday, January 30, 2013

Loss, and how a child explains death

I have no funny in me at the moment; that picture looks stupid. I was going for one of those things that I think they do on Tumblr where you say what your mood is. Not even clever-dumb. Don't try to deny it.

Anyway... we got the coroner's report. Apparently Emily had developed a rare heart condition, called Torsades de pointes, brought on by years of taking bipolar meds. Ironically she was wearing a monitor at the time, to try to figure out what was wrong with her heart, and they were able to determine the exact time and cause of death from reading the results. What can happen with this condition is that the heart will suddenly just stop, and unless you're actually in the hospital on monitors at the time, you will be dead within seconds. It's sudden and painless and it happened while she was sleeping. She would have had no idea what was going on, there wasn't even time to wake up and panic. Her heart just stopped, and that was it.

So, I suppose that's some comfort. I had been scared, thinking about her possible last moments, maybe panicking and terrified about what was going on, but apparently that would have been physically impossible. There was no panic and no fear; she was asleep, and then she just wasn't.

Of course this brings on all those "what-ifs" now. What if she had been able to turn in the monitor? They would have found the torsades and gotten her to a cardiologist? And, of course... what if she hadn't had to spend her entire life fighting demons; taking medication just to be able to function in the world. In the end, it was that fight that killed her; not even the demons, themselves.

Child 1 has been trying to process this, with his amazing autistic mind. It doesn't make sense to him that somebody's heart would just stop beating, so he has come up with an alternative explanation: she simply moved to a different planet, and he doesn't say that she "died," he says that she "became magical." So he'll say "When Emily became magical, she left the earth and went up into the stars. Then she found a new planet to live on and that's where she is now." He's also very concerned about Emily's sister Lizzie being sad and he asks about her a lot. He says "Lizzie doesn't need to be sad anymore, Emily is living on another planet." The amazing part of this, not only that he came up with all of this completely on his own, is that if Emily were the one to have to explain it to him, I'm 100% certain that this is exactly what she would have said.

She became magical and went into the stars to move to a different planet. If that's really where she is right now I KNOW that she has never been happier.

Wednesday, January 23, 2013

I am an autism mom

Please go and read this absolutely amazing, wonderful, awesome, perfect post written by my good friend Lexi from Mostly True Stuff.

She says it perfectly. PERFECTLY.

Tuesday, January 22, 2013

I have no time for passive aggressive bullshit

Oh my god it makes me crazy.

YOU know what I mean. The person who says cryptic things; possibly talking about you but definitely not to you? I. CAN'T. FUCKING. STAND. IT.

If somebody has something to say to me? Just fucking say it. Don't go behind my back and talk shit, don't stop talking to me because you're a big baby and you're afraid to speak up... just say it. Or fuck off! I have no time for this shit!  I've got all kinds of shit going on my life, both online and not, and don't have the time (and I definitely don't have the interest) to sit there and try to figure you out. "OMG. Did I say something wrong? What's going on? Are they talking about me? Are they mad at me?" I no longer care.

Now, before anybody accuses me of being a hypocrite by posting this seemingly passive aggressive post of my own, let me just tell each and every one of you right now that if I have a problem with you? You are going to know know about it. I should actually amend that previous statement to say that "if I have a problem with you and I care about your opinion...." In the last few weeks people have been coming to me with links to blog posts and they say shit like "Is she talking about you???" Well I have no fucking clue if somebody is talking about me, unless they use my name, so my answer is always "no." Because how the fuck am I supposed to know? And since I don't know, my answer is NO. They are not talking about me. Somebody else must have gotten their panties in a twist, but it wasn't me. So, I assure you that this post is not actually passive aggressively (passively aggressive?) directed toward any one (or two or three or four) person in particular.

I just wanted to make a general statement, one that I've made before, in fact; about 2 1/2 years go. If you've got something to say to me? Just say it. Otherwise? Fuck off.

Look! Here's how you can reach me and tell me whatever your problem is with me. How exciting!!!! jillsmo@gmail.com

P.S. Despite me having said that this post isn't about anybody in particular, if you still don't believe me? ASK ME. I'll bet you $500 the answer will be no.

P.P.S. I don't actually have $500 so you should probably take that bet, because I might have to owe you.

Sunday, January 20, 2013

Child 2's true confessions

"My favorite thing that I like to do with cats is get really close up to their face and make really awkward noises."

"Show me," I say.

Oh. Huh. I see. That IS awkward.

"And I also like to move my head back and forth when I do it.... like this...."

Hubs said I should make an animated gif, but I don't know how.

"Hey, you should put that on your blog," he says. "Here's how you spell what I said: "H -H -H -N -N -N -N -N'."

Hey, cool. That's a great idea!!

This is what I assume this activity looks like:

This is one of those things that's really funny to me but doesn't translate well into blog form, isn't it?

Saturday, January 19, 2013

"All Kids Do That" Part 20: Finding a School

See the tab above for more information about this series.

I know it's been a while, and I'm not actually taking new submissions for this series, but I was at 19... 19!! Not only not an even number but it's a PRIME number. I can't have that I needed another one. You understand.

Anyway, today we have J-Nut who has asked that I do not link back to her, but I'm pretty sure most of you know who she is already. And if not, well.... you should.

My son, Moe, is five years old. At the beginning of this year, many of his peers started kindergarten. In my corner of California, parents have several choices for their children, so I watched with envy and interest as I heard about kindergarten tours, listened as friends debated educational philosophies, and discussed the benefits of public and private schools. They waited nervously as children were placed on waiting lists for intra-district transfers, applied to charter schools or private schools, and ultimately made decisions about where their kids would attend. These aren't easy choices. But they are choices, and they are, for parents of typical kids, usually their choices to make.

And even though some didn't get their first choice school, by September, all of the kids were in school.

But not my son. This year, we pulled Moe from school.

Some background: Moe was diagnosed with autism when he was two. When he turned three, while other kids were still going to playdates and attending part time nursery schools, Moe started in an full time autism special day class in our public school district. He spent two years there, happily going to school every day but not learning or making much progress. His aggressive behaviors increased in frequency and his teachers didn't know how to teach him or keep him safe. We wanted a new placement.

I'm sure many of you reading this know the drill. For those who don't, a quick primer:

The Individuals with Disabilities in Education Act (IDEA) guarantees every child in the United States a free, appropriate public education (FAPE) in the least restrictive environment (LRE). Words like "appropriate" are of course left to interpretation. For most kids, this means being in a public school, with varying degrees of mainstreaming (time in a general education classroom) from fully included to, for kids like Moe, who is non-verbal and on the "moderate to severe" end of the spectrum, full time special education. Each child has goals that are part of a legally binding Individual Education Plan (IEP), and data is taken to demonstrate progress toward those goals. My son also had a Behavioral Support Plan (BSP) in place.

Had enough acronyms yet?

After two years in the program with very few goals met, and a very expensive Independent Educational Evaluation (IEE - oops, one more!) done by a child psychologist that we paid for privately, we determined that our school district's program was not appropriate for Moe. If the school agreed, they would then have to find him an appropriate placement, either in another district, through the county, or at a non-public school (NPS). They are legally required to pay for that. In our case, however, the school disagreed. We hired an advocate and a lawyer, and after four IEP meetings (for a total of over 9 hours), we unilaterally pulled him from the program, writing what is called a "ten day notice." This required the lawyer and allows us to pay for a private program and retain the right to sue the district for reimbursement.

The full day non-public programs cost $75,000 or more per year, and that is for the schools that will accept private payment. Most of them will only take school district referrals. We opted to put Moe in a private, half day language intensive program at a cost of over $40,000 a year. We pulled him from that program after a month for several reasons. Essentially, they were not set up to work with a kid like Moe.

So Moe isn't in school. We decided to continue the in-home ABA (behavior therapy) program that was working well over the summer. This is covered, thank goodness, by insurance, at least for now.

I am in the process of trying to find an appropriate program for him. There are several in our area, within about a 60 mile radius. Moe needs a highly structured environment that many programs cannot accommodate. Even so, I have visited seven schools that seem nominally appropriate on paper, but not one seems quite right. Some are too focused on life-skills (laundry, counting money, community outings) with no attempt at teaching academics. Moe is five and I'm not quite ready to give up on his learning to read and write. Other programs are more ABA-based, but are too focused on one on one learning, with very little opportunity for peer interaction. Others focus on communication skills but are not as skilled with behavioral issues. They all have trade-offs, and these are important trade-offs, that could fundamentally alter his ability to learn. We are not talking about who has the best drama or football program.

Furthermore, most of these schools, although certified to take kids as young as five, don't usually have students that young. Kids have to fail so badly or have to grow so big that the schools can no longer handle their behaviors - behaviors that were probably only made worse by the school - before the district will agree to a non-public placement.

Let's say, however, that I decide that one of these programs will work for Moe. We then have to go back to the school district, submit Moe for a battery of assessments (which he'll have to do anyway because he's been in the system for three years), and then negotiate. In all likelihood, we will have to sue the district to get Moe in school. They will pay a lawyer and we will pay a lawyer and our best bet is to end up with a mediated agreement. The school district could disagree on the NPS we chose, offering another instead. They agreement might allow Moe to go to the school we pick but waive other services, like speech therapy or transportation. Or it might be something like "we'll place your kid at this school but then you agree to move out of our district." Because then it becomes somebody else's problem and a new district can't change the placement until a new IEP is agreed upon. Sound ugly? It is. Most parents, by the way, don't win in front of a judge. The bar that schools have to meet to show "appropriate" education is astoundingly low.

And let's say, all of this did get worked out, and Moe got a placement, and then for some reason, the placement didn't work for him. The whole thing starts over.

In another year, I will be researching kindergartens for my typical three year old. I will go to open houses and talk to friends and do my best to find a school that will fit her needs. But it is our choice. And if it isn't exactly right, even if I just send her to the public school at the end of our street that isn't the best but is perfectly adequate, she will be fine. She will learn. And if we don't like the school, we will change. I can't say it will be easy. But I'm pretty sure it won't bankrupt me either.

Thursday, January 17, 2013

Bubble wrap: The scourge of the planet

We got a lot of packages delivered over the holidays, and with packages comes bubble wrap. Big bubbles, little bubbles, green bubbles, clear bubbles... there's a variety. My kids love this shit. Everybody loves this shit. I used to love this shit, that is until my house was full of giant sheets of bubble wrap that scare the SHIT out of me.

They like to lay them out on the floor and then stomp on them

I'll be sitting on the couch and suddenly POP! POP! POP! POP!

They'll be in bed at night, pretending to go to sleep, and suddenly POP! POP! POP! POP!

I'll be at my desk, on my chair with wheels, and I'll move backwards and suddenly POP! POP! POP! POP!

After I drew this I showed it to Child 2 and then pointed to the sheet of bubble wrap and said "does it look like that?"
and he said "Not even close."

I'm walking through the dark house to get some water and suddenly POP! POP! POP! POP!

Sometimes they like to sneak up behind me and suddenly POP! POP! POP! POP! I really hate that one.

I FUCKING HATE BUBBLE WRAP NOW!! It used to be such a fun thing to play with but now I'm like a soldier with PTSD, any time I hear any slight popping sound I dive under my desk to save my life.

Can we just go back to the days when bubble wrap was used to protect fragile things from getting broken? Because I don't think my psyche can take much more of this.

Hey, Middle School. You don't scare me.

Do you guys remember how I've been fucking freaking out about Child 1 moving on to Middle School? I even declared December 1st to be The Day I Officially Begin To Panic (it actually just came and went without incident, now that I recall).

My main concern has been about bullying. I was bullied in middle school and Child 1 has a much greater risk of being a target because he is autistic, and even though it's never been an issue, and he's totally not worried about it, I'M still worried. Because that's what I do. Worry, you see.

Well, before the break, I visited a few schools; in my district and some private schools. It turns out that I have some strong opinions about private schools, which isn't necessarily relevant to this discussion. I just kept thinking, as I sat there listening to them talk about how the class trip will be to Costa Rica this year, about all the kids who barely get enough food to eat, much less a fancy trip to Costa Rica with their middle school class, and about how our society values the privileged over the poor, and I knew that I could never willingly participate in such a system with a clear conscience. Not to mention that I just can't afford $20K per year for middle school, but if it was the right choice for my kid, I would somehow figure out how to make it work. How many mortgages will they let you have, anyway?

So, I called all the middle schools in our district, and my first visit was to the one that we're zoned for; where we would be going, anyway, if I didn't have all this research and meetings and michigas to go through. I signed up for a parent tour, and made an appointment to chat with the Principal for a few minutes before it started, and OH. MY. GOD.

This dude was awesome. He had contacted the principal at our current school, he had talked to our Program Coordinator with the district, he had done some research to find out enough about Child 1 so that he would be prepared to answer my questions. He took the time to listen while I babbled about how freaked out I was. He answered all my questions. He was awesome.

I asked about bullying, of course, and his answer wasn't "this is how we deal with a bully," it was "these are the systems we have put in place in order to prevent that kind of thing from happening." They have monthly topics where they address things like Being A Nice Person. Seriously! There are only about 100 more kids at the school than our current school but they have about 3 times more support staff. They're totally prepared.

Not only that, but the 6th grade class gets its own little pocket of the school where they do all of their classes in 3 rooms. There's no roaming the hallway trying to figure out where you're going, it's just one class to the next, right next to each other. But the best part is that the more I think about it, the better off I think Child 1 will be in middle school than elementary school, because it has a predictable schedule. You know when math will be, which day of the week and which time. Right now he goes into the class and looks at the board to see what they'll be doing that day, but in middle school there's no guessing. Here is your schedule and it never changes. I think he will do really well with that kind of structure.

And as for bullying, well, there's not much the school can really do to prevent what goes on outside of their view, and I'm still worried about it, but not as much as before. I know they'll take care of my kid if he needs it, and I feel so much better now. It's awesome.

So now I have to fill out this Parent Preference Form, and mostly I'm just irritated that I have to go and find his birth certificate again. Didn't I already do that once before when I enrolled him in Kindergarten? Do they think that information has changed since then?

Tuesday, January 15, 2013

Thoughts on getting older

For me, getting older has meant not giving a shit.

Okay, let me explain.

It used to be that I cared so very much about what every person in the world thought of me. Even somebody who could potentially be called my worst enemy, I had trouble living with the idea that such a person didn't like me. It had to be fixed; I had to make things right, or at least I had to try. And when I failed, which you will inevitably do with a person who doesn't know you and therefore irrationally dislikes you, I would beat myself up about it for days and weeks.

That seems to have changed for me and the only explanation I can come up with is that it's because I'm just getting older. I've seen a lot of life, I've experienced a lot of shit, good and bad; a lot of bad. I have a kid with autism and for some reason these facts have put so much perspective on things for me that I was able to let go of a lot. I just don't care anymore. It's incredibly liberating.

Life is too short to dwell on other people that you can't change. For example (hypothetically speaking, of course) somebody who would accuse me of having this blog because I'm trying to sell something and my only motivation is to manage my online image and bolster my position of privilege and authority. (OMG HYPOTHETICAL) In the past I might have been tempted to defend myself against such a hypothetical accusation, but now? Ehhh. Fuck it. I know myself; I know who I am and I know that such a hypothetical person doesn't know me from Adam. I see my children and the good little people they're becoming and I know that they are what's important. Not some cranky hypothetical stranger on the internet. They don't know me, and more importantly, they don't want to. So I no longer bother even trying to give them the time of day. (It's about 10am Pacific right now).

And another thing... life is too fucking short to not have a sense of humor. I feel sorry for people who can't laugh, particularly at themselves. I imagine that must be a horrible way to spend your time - not laughing. On the other hand, I also don't know them, so I can only guess. But you can't change a stranger who chooses to live their life in that manner, and so the most important lesson I've learned from getting older? Fuck 'em if they can't take a joke.

Monday, January 14, 2013

You know what pisses me off?

If you have any kind of ailment, or issue, or problem of any sort... the answer to it is always that you need to get more sleep.

Have a cold? Get some sleep. Stressed? Try to get some sleep. Painful carpal tunnel syndrome? Some rest might help. Bells Palsy? Are you getting enough sleep at night?

WTF is Bells Palsy, anyway? Do I have it?

I was watching this show last night and the main character is Bipolar. Her father reminds her that the best thing she can do for herself, to get better, is to get enough sleep. And she agrees, so she goes home to sleep. And I was thinking... Well aren't YOU just so fucking lucky?? A single woman who lives alone with no kids? She should be the healthiest fucking person in the world; she can sleep whenever she wants!!!

See, I don't get to sleep whenever I want, or enough. Last night Child 2 was up until midnight because he's afraid of zombies. He watched something called The Zombie Apocalypse, which I think was on the Discovery Channel (I wasn't home when it happened) and ever since he's been totally freaked out by it. So last night he's bawling and saying "I don't want to be like this anymore; I want to be normal again" and, god, I felt so bad for him. But I can totally relate to what he's going through because when I was about 9 my parents let me watch the Exorcist, and that shit fucked me up for weeks. I'm not sure I was ever normal again after that (explains SOOOO much) but I understood completely what he was feeling. It's a shitty feeling, it really is, but trust me when I tell you that Zombie Apocalypse ain't got nothing on the fucking Exorcist. He's actually rather lucky. I didn't tell him that, though.

Anyway, he was up until midnight, and then his brother came into my bed around 1:30 and stayed for the night, which he does every night, and I can't sleep when he's there, which means I don't sleep any night.

So FUCK YOU, medical establishment and your goddamn "get some sleep" advice. Why can't "take up smoking" ever be your answer to something?? I could totally do that.

I think my Bells Palsy is acting up again, I'd better go lie down.

Saturday, January 12, 2013

The Dive Bar Welcomes: Anonymous Autism Mom

Just a reminder that I don't write Dive Bar posts! They are submitted to me by other folks who have something they'd like to say and need a safe place to say it. This post was submitted anonymously by somebody with something to say and I'm happy to provide her with a safe place to say it.

Abusing Stereotypes of Autism and Death

One of most disturbing myths I’ve encountered in the autism world, is the claim that parents of autistic children are more likely to kill their children, than parents of neurotypical children. This is simply untrue, the statistics do not support the claim. The causes of filicide are more deeply rooted and connected to mental health issues too, rather than having any connection with autism itself. So who keeps spreading this horrible idea that parents are eager to kill their autistic children, and why do they keep making this claim?

I hate to say it, but it’s almost always autistic self-advocates who continue this baseless and extremely damaging claim. I’ve seen it in multiple blog posts, and in many more comment sections. Why would they want to do this?

There’s a war of sorts between autistic adults and autism parents, over who has the “correct” view of what is best for autistic children. The “war,” however, is at the extremes of both groups: Those autistic adults who would rather see few or no interventions to address autistic behaviors, and those parents who are willing to try damaging or unproven interventions. However, both extreme groups get generalized to the larger whole, which makes it easier to target broad attacks on entire groups of people, rather than acknowledging that it is a few rather than the majority who hold to either extremes.

This broad targeting makes for more alarming writing, and attracts intensely concerned readers who “simply must do something!,” over to the writer’s cause. It’s really not that different from dropping propaganda on a confused and ill-informed public in war time: You make the enemy look as bad as possible, strike fear in people’s hearts, and try to get them to see you as their savior (and perhaps even buy your book while they’re at it, why not). The truth is less alarming and makes for less interesting reading. It’s really the same attraction held by conspiracy theories.

So it makes sense to make parents of autistic children look like they’d rather kill their kids than accept them, it’s a good way to tar the entire parenting population and make your own views seem like the only sensible alternative to such a naturally outrageous view. Some parents endorse the filicide narrative too, again because it supports their own agenda. Typically they use it to claim we wouldn’t be killing our kids if we had sufficient supports available to our families. As nice an agenda as that may be, using false and immensely harmful claims to reach that point is unacceptable. The ends do not justify the means. It also runs too close to the completely disproven Bettelheim approach to understanding autism: Treating parents of autistic children as some sort of evil group, merely by the fact that their children have autism.

Recently, when the Connecticut tragedy cast a long painful shadow on the autism community – when people decided autism must be connected with mass shootings – were there masses of parents of autistic children grabbing the chance to abuse the stereotype? Did you read multiple blog posts from the autism parenting community saying “yes, our children must be put to death or be institutionalized to stop this horror happening again.”? Or did you see multiple blog posts defending the innocence and beauty and gentleness of our children? Did you see the creation of “Autism Shines” by the autism parenting community, with the aim of countering the negative and incorrect violent stereotypes of autistic individuals? I saw the latter. The world did. The news did. Everyone did.

We didn’t abuse the unfounded stereotype of autism connected to violence to serve our own ends. We didn’t use it to belittle autism self-advocates and put them in their place so that our voices as parents would we heard louder than theirs in the future: “Oh you must let us drive the autism out of our kids so we can stop them becoming killers, oh you must let us find a cure to stop this horror ever happening again...”

But wait. There were two incidents – two, only two, out of hundreds – that I can recall where that did happen. Where a parent started a Facebook group calling all Aspergers people killers and demanding cure, and a blog post where a sister to an autistic man claimed the violence inherent in autism could be avoided if we adequately funded the autism community. Did other parents rally to their cause? The exact opposite, we fought tooth and nail to shut them down and have the pieces removed, we commented endlessly to set the record straight. Is that the behavior you expect of people who are more likely to kill their own children?

It seems to me there is a double standard here, in terms of abusing erroneous stereotypes of autism and death. That it is acceptable for some autistic adults to keep spreading a link between autism parents and murder, but it’s accepted by autism parents that we would never use the same dirty tactics to undercut the voice of the adult autistic population. We instead leapt to the defense of our children and all autistic individuals. So where is the outcry protecting us each time another extremist autistic self-advocate mindlessly links parents with killing autistic children..?

I would like to say that because the autism-parent-self-advocate war operates at the extreme ends, that they get seen for the extremes they are, and not treated as a general view of more mild or sensible individuals. But we are told all the time that we must hear all the perspectives of autism, hear the grown up autism voices, realize that their views aren’t extreme, just “different.” And in that lovely open-minded state, the extreme gets bundled in with the more logical and gentle views, and we get told they’re all equally worthy of our consideration, otherwise we are shutting down their unique voices. Even when the claims made by the extremists are not founded on evidence or reality, or are over-generalized in a way that damages the entire parenting population.

Whereas parents are “just parents.” Our voices, our experiences, are just one more neurotypical voice, and can be dismissed far more easily. The fact that we are individual people, with individual children, gets lost in the noise about “privilege” rhetoric. We are expected to sit down and shut up in the blogging world, which is what we get told all the time in the real world: “You’re just not disciplining your child,” “ your child is fine you just want a label for him, you’re just seeking attention,” “but those are issues every parent faces, your kid is no different than my normal one.” We get told all the time how invalid and un-necessary our voices are, so yes it burns a raw nerve when we get told our views are worth little or nothing in the blogging world too.

In fact, I am so afraid of the backlash and hatred that even raising these views creates, that I have submitted this piece anonymously to Jill’s blog. I already know, from past experience, that I will be labelled as hating autistic people just because I don’t agree with some of their views or find some of their arguments weak or un-supported. It is a logical fallacy to judge an argument stronger or weaker according to who is making it, but logic seems to go out the window in the autism wars, replaced by emotion and declaring arguments invalid by virtue of “privilege.”

Ultimately, all I’m trying to say is let’s recognize that extreme views and experiences shouldn’t tar entire communities, let’s not use stereotypes and misinformation to silence other people in the autism world, let’s stop the double-standard that uses connections between autism and murder to shut up an entire population involved in the autism world.

I want to say “can’t we all just get along”, but I’m not that naive. If all I achieve in this post is reassuring parents that they’re not part of some more-likely-to-kill population, then I’d be happy with that outcome. Next time you see someone using an extreme view in an attempt to silence an entire group of people, call the writer out on the abuse. I am not a destined-killer, my son is not a destined-killer. All that’s being killed, is an open respectful conversation between people involved in the autism community.

Edit: The author has asked me to add the following:

People have been asking for examples of the claim that autistic children are murdered at a higher rate by their parents. I was honestly surprised that they were calling for examples of something I encountered so frequently in comments, and on blog posts, and in forums; I thought these horrible statements were widely encountered by others too. Admittedly, they are come across most often when there has been a recent high-profile murder of an autistic child, I can gladly say this hasn’t happened in a while (that I am aware of). So I’m not surprised that the examples aren’t fresh in people’s minds right now. Even though I knew a Google search wouldn’t locate the places the comments are made most often – in blog and news comment sections and in forum discussions – I attempted a search anyway to locate some examples. Many of the links located through the search were dead links, the post or blog had gone under or been moved / renamed. I was able to locate a few key examples though, this is just illustrative of a much larger number of comments perpetuating the myth:

"Autistics are murdered by mothers or fathers at an alarming frequency." By EvilAutie: http://evilautie.org/2012/12/19/autism-is-linked-to-violence/

“We know, for example, that more autistics are murdered by their parents than non-autistics.” Comment by “Undefined” on Autism and Oughtisms’ blog post:http://autismandoughtisms.wordpress.com/2012/10/16/love-and-acceptance-youre-doing-it-wrong/

“Autistic children suffer abuse and are killed at higher rates than normal children.” (no stats or research provided to back up statement about higher killing rates) Nancy Lofholm, on Denverpost: http://www.denverpost.com/breakingnews/ci_11116100

“Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care.” (No stats to back it up here either, just stated like a fact) On Thinking Person’s Guide, http://www.thinkingautismguide.com/2011/04/headlines-abuse-and-empathy.html

It’s also worth noting the frequency – and double-standard – of posts appealing to parents of autistic children as an entire group, to “please stop killing us,” as if murders by autism parents are very common or usual occurrences. Note that an equivalent would be if parents went around pleading autistic individuals to please stop shooting up the schools: Both claims are extremely broad and damaging generalisations about a group not actually pre-disposed to such actions:

“Stop Murdering Us!” By “Parenting with Asperger’s syndrome. http://parentingwithaspergers.blogspot.com/2012/04/stop-murdering-us.html

“Stop Killing Us” by Autistic Hoya. http://www.autistichoya.com/2012/04/stop-killing-us.html

“You keep killing us and I am pissed” by Radical Neurodivergence Speaking: http://timetolisten.blogspot.com/2012/03/you-keep-killing-us-and-i-am-pissed.html . Which happens to include the extra charming quote: "I fucking hate autism parents."

There are plenty of more borderline examples too, where bloggers and commenters fall short of using the exact words that parents murder their autistic children at higher rates, but they still unambiguously use the presumption as the basis of their arguments and related statements.

I hope that adequately addresses those who chose to focus on that aspect of my post. I would like to point out that the example was one instance of a much broader complaint about extremist rhetorics and double-standards in the autism community.

There are other comments that probably deserve my attention in the comments too, but I do not have unlimited time so I chose to focus on the most common complaint.

All that besides, I just want to thank those who came to my post with an open-mind and a willingness to consider my concerns and to hear out my personal experiences. Some of you have praised me, which is awesome, thank you for that. Some of you have just voiced your appreciation for the chance to think about and address these issues and concerns, thank you to you too for letting me know my post was worth your time!

Thank you most importantly to Jill for giving me a safe place to share my thoughts and concerns. It’s an invaluable and powerful thing.

Friday, January 11, 2013

Thoughts from a coffee shop

I just got a flat tire. While I was driving!! Thankfully I wasn't on the freeway and I limped along to a gas station where I put enough air in so that I was able to limp along to a Goodyear. Now I'm sitting in a coffee shop waiting for them to be done. Hopefully I'll be able to pick up the boys in time. Oh, and my phone is about to die.

Nevermind I just called hubs and he's going to leave work early so that somebody can pick up the kids on time.

There's a dude sitting 2 tables down who keeps muttering "stupid fucking bitch." Sometimes he says it loud. He's making me very uncomfortable, but it's a crowded coffee shop so I guess I'll be okay. There aren't any other tables to switch to and I can't really go anywhere. Maybe a bagel would help.....


Ahhh, bagels. Is there anything they can't do? The dude totally shut up!

Hubs and I were talking earlier about my quest to write something every day and he said I had to be really careful because "you could end up writing something really really dumb." And I said "yeah, but half of the shit I write is really really dumb, how would it be different?" And he said "but when you're dumb, at least you're clever-dumb."

I like that. Clever-dumb. I'm totally adopting that.

I've been thinking lately about humility, and how it's a trait that is so lacking in people these days, and I was wondering why that was. Lack of humility, lack of awareness of other people; selfishness, in general. It's so prevalent, on the internet especially, but really everywhere, and I was thinking about how it is my mission in life to make sure my kids don't grow up that way. It is my job as a parent to make sure both of my kids are aware that other people have feelings and that not everything is about them. They need to be taught these things because if I let them have their way all the time they will grow up to be adults with no respect for others, and this annoying sense of self-righteous privilege that I simply cannot stand. Child 1 in particular needs to be aware that despite his disability, there are still rules, and he still must follow them. The world does not revolve around him because he is autistic and I think raising him to believe this will create an adult who would use his disability as an excuse for bad behavior. Something like "I get to say whatever I want to anybody I want, because I'm autistic, and correcting me means to marginalize me." This is simply unacceptable to me. Autistic or not, he lives in a world with other people and by sharing the world with others it is crucial that he be a respectful person, with humility, and empathy for others.

I raise them both this way, obviously with different methods that works for them as individuals. Child 2 is a different story, of course, and sometimes I really question if I'm doing a good job or not. It's easy to brush it off as "oh, he's just 7" but I believe he needs to be instilled with these values now, or he never will be. But..... he can be a rude little shit sometimes and I question if I'm doing anything right at all.

Today we were in Costco, however, and you know how they have all those free samples there. At every table he would insist that we stop to see what they had. And every time he would wait his turn, he would get up to the table and say to the person behind it "excuse me?" and wait for a response. He would then say politely "can I have these chips?" or whatever, and then he would wait for a response before taking them. Then he would say "thank you."

I was really fucking proud of him. Really. Fucking. Proud; and I told him so, of course. What a good and nice little person I've got here. I am so proud of that. He's just a little shit to me and his father, you know... at home. That's so good to know, actually, that out in the world he's awesome and he just lets his guard down at home. I can accept that, I really can.

So... what do you think? Clever-dumb? Or just dumb?

Thursday, January 10, 2013

A Whole Lotta Nuthin

I would really like to start blogging again. I don't even know how it happened that I stopped, other than shit going on in my life. It's hard to be funny when you feel like shit all the time, as you can imagine. But, things are better now and I'd really like to somehow figure out a way to get back to it. I don't really know how, though, but then I thought that I also didn't know how to start blogging when I first started and I somehow kind of sort of figured it out along the way.

And I had some real pieces of shit back in the beginning; I mean, worse than the pieces of shit that came after it. For example, Why Snark is Like Bacon, I Have Nothing To Say, Next Blog, and the always awesome Blogging Is A Very Lonely Activity (it turns out that it's only lonely if nobody reads what you write).

So, I figured what I'll do is just type something up every day, even if it sucks. It's like when you start exercising again after you've taken a three year break; start slow and eventually you'll re-build those muscles if you keep at it. Not that I have any personal experience with taking a three year break from exercise, of course. I just mean that's what I've heard. The difference now, of course, is that back in the beginning I only had my mom, husband and 2 friends reading. Now I have.... more, somehow. So I need to explain that you guys should not expect anything good. I'm working on my muscles, you see. And it's probably going to suck for a while. Bear with me.

Bear by Allie Brosh, of course

Wednesday, January 9, 2013

Hey, does anybody remember when I used to blog?

Tuesday, January 1, 2013

2013: This is as much as I'm willing to commit

I'm not making resolutions; I'm making necessary and obvious changes (that you don't get to hear about). And I would have done it sooner but I was drunk.

Happy New Year! :wave: