Yeah. Good Times.

Getting the last word

2013-05-21T10:04:00.001-07:00

That's a muzzle. In case you were wondering.
Which you probably were.

Facebook is evil. I don't know what it is about that place that brings out the worst behavior in people. I've definitely been guilty of falling into that trap in the past, but lately I've been working really hard to not get involved in stupid fucking arguments that will never go anywhere and will only piss people off. Moreso.

The problem, though, is that I have a really hard time keeping quiet when there's something I want to say. I mean... I have a really hard time. Some people are able to just walk away when they know everybody is losing the argument, but me? Nope. I've never been able to keep my mouth shut, it's physically difficult for me to shut the hell up.

Lately, though, I've really been working on it. Because the truth is that very very rarely does anything productive ever come from a flame war and nobody's mind will ever be changed by a sarcastic quip. It also doesn't matter how strong my argument is because people's minds are already made up, no matter what the topic. They see me as their enemy and there's nothing I can say that will change that. So when I find myself in the middle of a flaming pile of Facebook shit I've been exercising that "unfollow" button and working really hard to just walk away.

But, I still have all these things I want to say.... So I figured, I'll say them here! And since they're totally out of context there won't be any fire to flame! IT'S BRILLIANT!!!

Okay... here we go....

So I guess you're planning on homeschooling, then?

Are you seriously mocking the pain of parents who have lost their children? What kind of a monster are you?

You spelled "I'm a fucking idiot" wrong

Oh, I see. Everything is about you.

*you're

OH GOD that felt good. Thank you, blog, for letting me get that out.

In Memoriam

2013-05-19T20:40:00.001-07:00

Graphic by fourseastars. Used with permission.

Drew Howell. Owen Black. Mikaela Lynch.

In the past week three children with autism have gone missing, later to be found dead in a body of water. Mikaela Lynch was 9 years old and was missing for 5 days before her body was found in the creek behind her house. Owen Black was 8 and slipped out of the vacation house he was staying in with his parents while they slept. Drew Howell was 2. They were all autistic and nonverbal.

Three children now dead. These are unimaginable tragedies; I can't even comprehend it, it's so huge. I can't put myself into the heads of the families who are now so devastated by these losses, it's too big for me to understand. Even saying that I'm sorry for their losses just seems banal. I can't imagine their pain. I can't.

When things like this happen, it's human nature to want to have a reason, an explanation. It's natural to ask questions like "how could this happen?" and I'll try to explain what I can: Professionals call it "elopement behavior," or "wandering," and studies have shown "49% of children (with autism) have wandered away from safe environments, such as homes, schools, public places, day camps, and other non-home settings." This means that they will just take off running at the drop of a hat. It means they will be there one second and gone the next. It means their parents have to keep a hand on them at all times; at all times: 24 hours a day, 7 days a week, because they will be gone in an instant. So many families I know have special deadbolts or alarms on their doors, just so they can sleep at night without worrying that their child will leave the house while they sleep.

In addition, autistic children who "wander" have no understanding of their personal safety, and they are very commonly attracted to water. Sadly, The National Autism Association reports that "in 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."

I know how much one might want to say "their parents should have been watching them," because, like I said, it's natural to want to find an explanation, but it's just not that easy. You can't keep your eyes open and on your child 24/7, you just can't. What happens if you're in a shopping center and you drop your wallet? You have to bend down and pick it up and then you look up and she's gone. Yes, it happens that fast. And I can promise you that this was the biggest fear of the parents of these children. I would bet all the money in the world that they would lie awake at night in a panic, worrying about their child running from them and having something horrible happen. This is, literally, these families' worst nightmares.

These events are unspeakable tragedies but they are not the fault of the parents. These children's parents are not to blame for this. Nobody is to blame for this, it's just a horrible, unimaginable thing that has happened. That said, there are still some people out there who will use these tragedies to advance their own careers and personal agendas, in particular one pink haired hack who "writes" for the Examiner (I put the word "writes" in quotes because having the ability to bang your fist into a keyboard doesn't automatically make you a writer.) These people will try to take advantage of the pain these parents are feeling and make some money by having you click on the link to their inflammatory "articles." These people not just willfully violate journalistic ethics and should be fired from whatever writing jobs they have but are also the scum of the earth.

If you actually want to help, don't point fingers and don't place blame. Educate yourself about autism and wandering. Join in efforts to help support families who lie awake at night worrying. But most importantly, don't judge. Don't say "those parents should have done a better job," because until it's YOU lying in your bed at night in a panic, you have no idea what it's really like. And the truth is that Child 1 is not a runner and this isn't part of my experience with autism. I lie awake nights worrying about different things and therefore I, too, have no idea what it's really like. But that doesn't stop me from being educated on the issue, and education is what prevents judgment. If you don't understand this pain, that's okay, you don't have to. Just don't judge what you don't know.

Happy Mother's Day!

2013-05-12T12:46:00.003-07:00

I'm in the bathroom, which is right next to Child 1's room, and I hear him say this:

"Huh?"

"Why?"

"What?"

"Okay."

pause

"Happy Mother's Day, Mama!"

I hope you guys are also feeling the love.

Wordless Wednesday: "Mysteriously farting curtain"

2013-05-08T00:00:00.000-07:00

Standardized testing

2013-05-06T10:18:00.001-07:00

State tests are this week in our district. Child 1 takes some different test and they pull him out of class and into the Resource Room for it. He thinks it's a nice break from the usual classroom boredom. This is Child 2's first year having to suffer through it. I happen think it's cruel to make 2nd graders go through this bullshit, half the kids are freaking out because teachers put so much emphasis on the importance of these things.

First of all, just so you know, depending on which state you live in, you might be able to opt your kids out of having to sit through this bullshit. Check out United Opt Out or FairTest for more information. If your kid has an IEP don't just take the word of the school district that he or she MUST take the test, that might not necessarily be true.

Anyway, I haven't opted either of my kids out because they both don't give a shit. If either of them ever for a minute showed any sign of distress about it, I would pull them in a New York minute; in California all you have to do is say "I would like to opt my kid out" and BOOM. All done. Administration will tell you that you can't, but they would be wrong.

That said, here's the conversation I had with Child 2 as he was getting out of the car this morning. I'm proud of us both:

Me: "How are you feeling about the testing, are you okay?"

Child 2: "I'm totally fine, because the tests are frickin meaningless. What's the point of being nervous about something that's frickin meaningless?"

Me: "That's right, there's nothing to worry about. But some of your friends might be nervous, so tell them what you just told me. And make sure you say 'frickin'."

BOOM.

Share your story

2013-05-03T15:58:00.002-07:00

Hey folks! My friend, who blogs at The Short Bus Diaries, is going in for a second due process hearing next week in Washington DC. She and her family do not believe that the hearing system is set up fairly, nor do they trust that anyone representing the school system (who has failed this boy for three years) is going to tell the truth about the state of special education in the District. They also believe that their district cannot educate her son, given his significant needs. They have taken to social media and blogging to vent their frustrations and to attract the interest of other parents who may want to come forward with their own stories. They have contacted the press, have protested at public events, and testified in front of the city council. Unfortunately, all of these posts, events, etc. are now being used against them by the school system's lawyer, apparently intended to paint them as "crazed parents." Their lawyer is trying to demonstrate that their reaction is a normal response to a stressful and emotional situation: they are trying to fight for their child and this fight should not be used to paint them as "crazy."

Here's where you guys can help. They're looking for other parents out there who have had difficulties of their own and who have blogged about their situation. Their lawyer will use these posts to demonstrate that other parents have/would do the same thing. Have you had trouble with your school district and the services for your child with special needs? Have you blogged about it? If so, please put a link to your post in the comments here. My friend will come and collect your links to give to her lawyer.

Would you like to write something about your struggles? That would be great!! If so, they need your post by Sunday night to use on Monday morning.

For more information about their struggle, visit their Facebook page: Invisible Boy: DC Public Schools' Failures and the Decline of Our Son

Thank you!!

A dog analogy

2013-05-01T12:36:00.003-07:00

Child 1 is afraid of dogs; irrationally and completely scared shitless. It doesn't matter the size or the temperament, he will walk the widest arc around even the sweetest, calmest dog in the world who is sleeping on the sidewalk, nevermind the happy-go-lucky-I-want-to-lick-your-face ones. He runs in abject terror when he encounters them, even as their owner explains "don't worry, she's friendly!" That doesn't help, friendly is even worse. I've learned, over the years, to put my body in between a dog and him whenever we encounter one; if he's hiding behind me he won't feel the need to run into the street to get away from it (and he's done that).

Earlier today I was walking home from the store (by myself!! OMG!!) when I passed a house that had a dog inside a fenced in yard. This was one of those little yippy guys, with LOTS of energy, and he had very very strong opinions about the fact that I was walking past his yard. The yard, and the fence, was rather long, and as I walked by, he jumped and jumped, and ran back and forth, and barked his opinion at me quite forcefully. It was actually a little unnerving, even to me, but this guy was so small that even his highest possible jump only got him halfway up the height of the fence; there was no way he was getting out.

And I thought, as I walked by, that I was glad Child 1 wasn't with me, because even though he would have been physically safe, he would have been emotionally very upset by the experience. And then I thought that there were probably some people in the world who would complain to the person who lived there that they had an autistic child who was terrified of dogs and the owner needed to keep their dog inside so as to not upset their child.

Are there really people like that? I don't actually know (who knows, here in Berkeley. Probably). Regardless of how unreasonable this request is, however, it seems to be to be a good analogy for a manner of child raising in which I do not subscribe: that the world needs to bend for my child because he is autistic. That I have the right to place unreasonable demands on other people, and that I should expect other people to acquiesce to my unreasonable demands, because my child is autistic.

I don't think that is my role as a parent of an autistic child or even an NT child. I think my job is to prepare them for the world, the world as it is, not the other way around. If I just happen to have some spare time I can do my best to try to educate people about autism, but that's all I can do. I can't expect other people to change for my son, but I can expect to teach him to prepare for them. The world may not be a completely fair and happy place, but it's my job, as his mother, to make sure he enters the world with the tools and the fortitude in order to deal with it.

I have no right to ask the dog owner to keep his dog inside, but I do have the right, and the ability, and the presence of mind, to cross to the other side of the street so that my son can still make his way down the road.

So what. I am a rock star. I've got my rock moves.

2013-04-30T12:46:00.005-07:00

You guys remember the post I wrote over the weekend? The one where I talk about how I'm being blog stalked and how that has changed me? Well, I turned off comments for that post because I didn't want it to turn into a pity party (moreso) but of course that didn't stop you guys from getting your messages through to me. That was inevitable, I suppose.

I want to thank you all for being such awesome people. Thank you for your messages and your words of support. Thank you for bearing with me during that pity party, I probably should have left comments on so that I could just unabashedly indulge in it. You guys are the best, and your words mean more to me than my own words do. Okay, that sounded dumb and cheesy but I hope you know what I mean.

And you're right, of course: fuck the haters. I let them get me down in a moment of weakness and self indulgence, but the truth is that I'm better than they are. For one thing, I'm not afraid to actually speak to a person if I have something to say to them, I don't just creep behind the scenes and then talk shit in private. That's what pussies do, and I'm not a pussy. Not by a long shot, and I won't let them turn me into one.

So, thank you. Thanks to the cake lovers, and the Australians, and to anybody who has written to me while sitting in the dentist's chair: you guys make it all worthwhile, and you keep me going.

Here's how I'm feeling today:

FYI: I've been working out and I'm hoping I'll be able to draw my ass a little narrower in the future

Other People

2013-04-28T23:37:00.001-07:00

I'm starting to discover that the most difficult part of my personal journey with autism is made that way mainly because of Other People. Many of my friends experience difficult behaviors, and language deficits, and sensory issues, and these are the things that make their lives difficult. Other friends battle with school districts, or insurance companies, or Regional Centers, or whatever "official" agency is involved in their lives. But I've been (OMG SO) lucky that my experience has been relatively easy, and as such I'm able to go outside my own inner space and notice that my biggest problem has really nothing to do with my son or myself: it's about Other People.

Other People, and their attitudes about how we take up space in front of them. Other People and how my ideas about how to be a human being are different from their ideas. Other People and how much they just don't know about our lives, our feelings, our perspectives, but still have an opinion about it. Other People and their (sometimes unfortunate) need to tell me about how what they think is different from what I think, even if I don't ask. Or care.

Child 1 goes through phases of things that he is "interested" in. I put that word in quotes because when he finds a subject he likes, it's not so much an "interest," as it is an "all consuming, overwhelming obsession." These topics come and go, although some, like BART, are here to stay (forever and ever and OMGEVER). For example, he was really into elevators for a while, so we would spend our weekends riding elevators, but these days he's really interested in stores. He loves his stores. He likes to talk about how there's a Target in Richmond, and one in Emeryville, and another in Pinole. And then there's a CVS on Solano, and one on San Pablo, and another brand new one is opening up on Telegraph!!!! And so, we spend a good deal of time on the weekends visiting these various stores. You would think that going to Target every weekend was a good thing but, oddly, even Target gets boring when I have nothing I need to buy. (I tend to do a lot of impulse buying. I mean, I don't HAVE an eyelash starter kit from Revlon, but do I know for sure that I don't need one?)

This weekend we went to check out the brand new CVS that will be opening at some point in the next month. (The store is right next to the middle school he'll be going to, but does he care about the middle school? No. Not one bit. He cares that there's a CVS opening right next door sometime soon. I'm jealous). Anyway, we go to the eventual CVS, and as I pull into the parking lot I see that it's been roped off, as if they're trying to prevent people from wanting to shop there. But since we're not there to buy an Eyelash Starter Kit, I drive past the cones and into the parking lot. Really what we want to know is the date that the store will be opening, so that we can be there for its grand opening, and I'm hoping there will be a sign or something. I see that there are signs on the door so we park and get out to look more closely. Unfortunately the signs don't give a date, they just say something like "we're not open, sorry you can't buy toothpaste yet." We stand there for a bit, anyway, looking through the windows; it's just a big empty space inside and there are no shelves installed. I figure it's going to be at least another couple of weeks before we can actually go inside, so I tell him that and we go back the car to move onto the next CVS.

As I'm pulling backwards to leave the parking lot, I am approached by one of these Very Typical Berkeley People. Very Typical Berkeley People are major hippies, who feel a sense of entitlement about themselves and their importance in the world and as such they are all kinds of up in your grill about stuff. These are the people who stop me in Trader Joe's to tell me I shouldn't let my kid run back and forth down the aisles, even though he's not actually bothering anybody (and I know this because I'm fucking watching him). They will find my kid in the horticulture store and report him to the manager because he's "unsupervised," and then I hear his name over the loudspeaker letting me know that I need to go and collect him from the office. These are the people who think they know everything about everything and have absolutely no problem informing you of that fact. He stops my car to let me know that "the store isn't open yet," and I should have known this because "the shelves aren't up." I need to know that today is the not the day that I will be purchasing shampoo from this particular CVS and I "should come back in a few weeks."

Yeah. Okay. THANKS. And I thought that it would blow this guy's fucking mind if I told him that we're not here to buy conditioner, we're just here because we really like stores. He wouldn't have any idea what I was talking about; it simply never would have occurred to him that we were there for another reason outside of his own experience. Really like stores? Who really likes stores? You go to CVS to buy shaving cream, you don't go there because you like it. But really, it's okay. He doesn't need to experience what we experience (although... would it kill him to think of something other than himself???) however... this is our obstacle. This is our problem, with our autism experience. Other People. Dealing with them, and their selfishness and their self centered crap that doesn't involve us; this is the lesson we need to learn, Child 1 and myself. How do we make our way in the world, being the people that we are, despite the fact that Other People are there, too?

It's so easy to say "forget about Other People, just worry about yourself," but that's not very realistic, because they're just always there. They're in the grocery store, and the post office, and Starbucks; they're online, they're reading my shit, and they have very very important opinions about things, which they are apparently unable to keep to themselves. Even though they don't know us from Adam (whatever that even means), they seem to know what's best for us, and they have no problem letting me know that. They lecture me in parking lots and they write long, self righteous blog posts about how they are correct and I am incorrect. How the fuck do you get away from Other People? Seriously. Because "just ignore them" doesn't seem to be working very well.

Anyway, I promised myself, after my last post, that the next thing I blogged would contain a shitty drawing, even if it didn't make any sense, so... here it is, me! YAY!

Pardon Me

2013-04-27T00:55:00.004-07:00

When I started this blog I had absolutely no idea what I would do with it. I had no plan, I had no reason. I had nothing except, hey... here's a place where I can write shit down.

It's been three years now, and I've (somehow) gained myself a reputation for being a person who says what other people are thinking but are afraid to say. (Also I draw stupid pictures that make people laugh.) Sometimes I write about autism, sometimes I write about parenting in general, sometimes I write about nothing at all.

The past few months things have changed for me; I found myself in the middle of other people's political missions. Positions that don't necessarily involve me, discussions I have nothing to do with; I've been sucked into it. I have friends who I love, who say things that are brave and right, and sometimes the things they say catch the attention of other people who have blogs and BIG Facebook pages, and they get some shit for that. And when my friends catch shit for the things they say I will come to their defense, because they're my friends and I love them. It doesn't matter if I don't necessarily agree with them 100%, the point is that people feel what they feel, and therefore they should have the right to say what they feel. Parenting, especially parenting a child with special needs, is a journey, sometimes a difficult one, and we all need support to do the best job that we can.

The problem, though, is that as a result I've attracted the attention of some folks who dislike me simply because of my associations. Also they don't like my honesty and my sarcasm, I guess? Regardless of why they dislike me, though (because that doesn't actually matter; the truth is that they just don't know me) I know that they read my blog, looking for things they can pick apart. I see them, in my site stats and I know they're here only because they're hoping to catch something I might say that they disagree with. So that they can take my words, put them on their own blogs and Facebook pages, and then explain to their readers why I'm wrong. Why I'm wrong about my feelings. Why I'm wrong to support other people in their feelings. Just... why I'm "wrong."

So, I'll be honest with you guys, this has changed me. I've been hesitant to write stuff, since I know these people are now watching me. I've been afraid to speak my mind. I don't want them to send a crowd of followers over here to tell me I'm a bad person, I don't know that I have the constitution for that. So, I've changed. I've changed how I write; I've changed the topics that I usually talk about. And, frankly, I'm really not okay with that.

I'm turning off comments for this post because my intention here isn't so that a bunch of you guys can tell me that I'm awesome and that I should still say what I think; this isn't me asking for validation. My point is just to explain: this is happening now. I know I'm being watched. I know my words are being analyzed. I can no longer live up to my reputation of being a person who says what you're thinking but are afraid to say, because now I've become afraid to say it, too. I've never had this kind of audience before, and I don't really know what to do about it.

Anyway, I heard this song tonight and it struck a chord; and I wanted to explain. I don't know if anybody has been wondering what's happened here, but this is why. I've been struggling with what to do here; with topics I would normally write about, but I've chosen to keep it to myself. I know our instinct is to say "fuck the haters," but, like I said... I don't know that I have the constitution for it. Maybe that will change. Maybe I'll get stronger. I hope so.

I used to watch these guys play in backyard keg parties when I was in college. I love how they've grown up.

"Pardon Me"

Pardon me while I burst

A decade ago, I never thought I would be.

A twenty three on the verge of spontaneous combustion. Woe-is-me

But I guess that it comes with the territory.

An ominous landscape of never-ending calamity.

I need you to hear. I need you to see.

That I have had all I can take

And exploding seems like a definite possibility

To me

So Pardon me while I burst into flames.

I've had enough of the world, and its people's mindless games

So Pardon me while I burn, and rise above the flame

Pardon me, pardon me. I'll never be the same.

Not, two days ago I was having a look in a book

And I saw a picture of a guy fried up above his knees

I said I can relate

Cause lately I've been thinking of combustication as a welcomed vacation from.

The burdens of the planet earth, like gravity, hypocrisy, and the perils of being in 3-D...

And thinking so much differently.

Pardon me while I burst into flames.

I've had enough of the world, and it's people's mindless games

Pardon me while I burn, and rise above the flame

Pardon me, pardon me. I'll never be the same.

Never be the same...yeah.

Pardon me while I burst into flames.

Pardon me, pardon me, pardon me.

So pardon me while I burst into flames.

I've had enough of the world, and it's people's mindless games

So pardon me while I burn, and rise above the flame

Pardon me, pardon me. I'll never be the same.

Pardon me, never be the same. Yeah

Wordless Wednesday: The view from the sidewalk

2013-04-24T00:00:00.000-07:00

Things I Find In My House #16

2013-04-22T09:42:00.001-07:00

This would be perfectly appropriate in December....

You lie

2013-04-21T16:28:00.002-07:00

I was getting my hair cut on Friday, I always go to the same guy, John, whom I have written about before. John is awesome and the salon is directly across the street from the school. I always end up making my appointments during lunch recess so I get to look out the window at my kids on the yard. John says I do that on purpose but I really don't. It must be Freudian scheduling.

Anyway, John is awesome and we always end up in these really deep discussions about parenting and such. He's my age but has a 21 year old daughter and one of his many pearls of wisdom is "having kids is like getting cancer. It immediately and irrevocably changes your life in a way you can't possibly predict, and unless you have cancer you have no idea what it's actually like to have cancer. And you would never tell somebody with cancer how to have cancer, even if you can imagine what it's like. So unless you have kids you need to shut the fuck up about it."

Have I mentioned how much I love John? Anyway, this time we were talking about Boston, and earthquakes, and fire drills, and that balance we need to find, as parents, between answering their questions and scaring the shit out of them. This is a particularly important balance for those of us who have kids that tend to... shall we say.... "obsess" about things like this. I mentioned that Child 2 had asked me what "terrorism" meant and that I had defined it but I was glad he didn't follow up with "will that happen here?" Because I don't know how to answer questions like that. The odds are that no, it won't happen here, so I should say no, but what about earthquakes? Earthquakes WILL happen here, we just don't know when or how big. Will our house fall down in an earthquake? Probably. There's a pretty good chance, actually. But I don't want my kids freaking out about that, so how to inform them without actually informing them?

"You lie." John says. "You fucking lie to their face, is what you do. They don't need to know the truth, they won't understand. And then when or if it actually happens you just deal with the consequences."

I get that, in theory, but I don't like to lie; it makes me uncomfortable. So I try to hedge around the answer and I end up fucking the whole thing up. Usually. Next time I'll just straight up lie and see how that feels.

Anyway, what do you guys do?

On anxiety, "passing," and fire drills

2013-04-20T16:01:00.000-07:00

It is a well known fact that Child 1 is not a fan of the fire drill. Our school's Principal knows that she needs to inform me the minute one is scheduled. Pretty much every single person who works at our school is aware of Child 1 and his issues with the fire drill. It's written into our IEP and will be a major topic of discussion at our Middle School transition meeting next week.

One day last week I arrived to pick up the kids about 20 minutes earlier than usual. I just happened to be really early that day, it was a concidence. I walk up to the school to find that the alarms are going off (so loud) and all of the kids are lined up on the yard. Some of the classes were still walking out when I got there so I must have arrived very closely to when it started.

My first thought was to be mad that a drill was scheduled and nobody told me. They know they're supposed to tell me when a drill is scheduled!!! But when I find Child 1's teacher, I ask "was this scheduled?" and he tells me it wasn't. Somebody must have pulled the alarm or something. A pulled alarm is the reason Child 1 has so much anxiety about these things, because it happened when he was in 1st grade and that was the beginning of his anxiety about them.

I find Child 1 sitting in the line with his class and I can tell from the look on his face that he is very upset. Poor kid is freaking out with anxiety and as soon as he sees me he starts crying. He leans into me and I hold onto him and I'm so glad that I happened to be 20 minutes early.

He asks me what happened. I say I don't know but probably somebody pulled the alarm, like they did when he was in 1st grade. He's still very much not okay but he's getting calmer and I can tell he's feeling better. We sit there for about another 10 minutes, and as we do, a few staff come by to see how he is, because, like I said, everybody knows about Child 1 and the fire drills.

I am struck by how they talk to him about it. They tell him "you're doing really well" and "see? it's not so bad." His aide tells me "he did really great when the alarms went off." As if the outward appearance of calmness is evidence that he's perfectly fine with the experience. Because NO. He's NOT doing really well. He is really really upset about this. This is his worst nightmare, actually, an unexpected fire alarm. How can they say he's doing great when he's so obviously not doing great??

It seems to me that the lesson here is for him to learn that regardless of how he feels inside, what's important is that he doesn't let anybody know about it. What kind of messages do we send when we tell people who are filled with anxiety and upset that they are "doing great" simply because they appear calm? Doesn't that teach them that they must appear calm at all costs? That must a really horrible feeling, and it reminds me of how my autistic friends talk about the strain of "fitting in." Of learning how to pretend to be "normal" so they can "pass," but on the inside it's a huge and oftentimes painful struggle for them. Some of my friends have spent a lifetime trying to "pass," while feeling horrible on the inside. This is unacceptable, this kind of painful struggle. We need to do better. If our goal is true autism awareness and acceptance then we need to do better.

I understand my purpose now is to educate the staff at the school, and the staff at his school next year, and of course that is what I will do. But my kids are always my first priority and my mom brain keeps getting stuck on "what if I hadn't been there?" I talked him through the experience, we found out what happened (somebody microwaved some lasagna for too long and it set off the alarms) and now he's doing okay. But if I hadn't been there he would have been on his own, full of anxiety, and surrounded by adults who just don't get it. And that's even more unacceptable.

Wordless Wednesday: Evil homework doctor

2013-04-17T00:00:00.000-07:00

The Prince of Cake

2013-04-15T22:24:00.003-07:00

Tonight at dinner, Child 2 was being very argumentative. This is not an unusual occurrence. He didn't like what I had made (macaroni and cheese, of all things) and he complained about every bite. "I don't like macaroni and cheese." I replied, as usual, "well, that's your dinner...." Child 1 loves macaroni and cheese, he was gobbling it down during the discussion.

Dinner is over and they both run off. Hubs is home, so I tell him he's in charge and I go downstairs to watch the Boston coverage.

Later, I go upstairs to get something and I find Child 2 in the bathroom crying. Also not an unusual occurrence. "Tell her what you told me," Hubs says to him. Uh oh...

"Mama, I have two things to tell you but you're going to be really really mad at me about both of them." (This is how he talks, he gives me lists. He's so much like me. Soon he'll be communicating entirely in Excel spreadsheets. My boy!!) "Okay," I answer cautiously, because by this time I was watching The Voice and Hubs was in charge of bedtime so I didn't really want to get involved in whatever the hell was going on here.

"Number one, I just found out that you really love the chocolate peanut butter dips." He says. He's talking about granola bars. "That's true, I do." I say, because who doesn't love chocolate and peanut butter? "Number two," he continues "I ate, like, six of them and now I think I'm going to throw up." He dissolves into sobs. Apparently as I sat and watched MSNBC he had stolen and eaten all of my granola bars because he was still hungry. "I FEEL SO GUILTY!" he cried. "OH." I say. "Well, I don't really care that much about that first one, but the second one? Yeah, you're kind of in big trouble. Okay, bye!" I say and run out of the room, leaving Hubs in charge of punishment.

Later Hubs comes down to report that "Child 2 is in his room and he's on lockdown. He's only allowed to come out to pee." Usually he comes out up to 10 times after he's gone to bed. One time I actually paid him $5 to stay in there all night. "Also I read him that cake post from Hyperbole and a Half."

"The God of Cake?" I say, because I know her stuff like the back of my hand. "You read him the God of Cake?"

"Yeah, that's what it's called, The God of Cake. Except I don't think it had the impact I was hoping for, because even while she's throwing up cake all over the place, she's not sorry at ALL. She's just a hyperactive, sugar-filled, throwing up, remorseless nightmare."

Because that's how we roll in this house: Allie Brosh is our go-to for cautionary tales. But, on the plus side, it's been over an hour now, he's still in his room and he hasn't thrown up at ALL.

Musings on Autism

2013-04-14T00:18:00.001-07:00

This is another repost of something I wrote a few years ago. Oh, by the way, since you're here.... go here and vote for me? You need to be registered with them to vote, so, um... do... that?

I got to hang out alone with Child 1 today; hubs was working and Child 2 had a playdate, and I was once again struck at how different these two children of mine are, and what a completely different experience it is to just hang out with the one. And I have marveled hundreds of times at the irony that my child with autism is so much easier than my child without, especially now that he's getting older. He's completely lost that autistic rigidity he used to have; it used to be that he would freak out if I so much as pulled out of the driveway and turned a different direction than he was expecting, but now he just asks "why did you turn right instead of left?" and will accept my answer and move on. Child 2 would argue, loudly, with me about it until I screamed at him to shut up (I don't really do that. Or do I?) But Child 1 talks so softly, I'm always having to tell him to speak louder because I can't hear him. And although he spends a good deal of his "off time" making noises that sound like a BART train, accompanied by various other vocal stims, he's really very quiet. And so mellow, and timid, and sweet, and of course insanely beautiful and awesome.

I used to think that his mellowness was a result of the autism, which causes him to withdraw to block out the external stimuli that his brain has trouble processing, but now I'm not so convinced of that. He's getting older, he's obviously having an easier time with the sensory issues, but he's still so quiet and calm all the time, so now I'm pretty sure that's just how he is; he's a calm and mellow little dude, a lot like his Dad, actually. So, I was pondering this issue earlier and, for the zillionth time I wondered what kind of adult he would be. How would he make his way in the world? He has obvious differences, he's super calm and mellow and sweet and the world is a cruel, harsh place. How will he be as a teenager? As an adult? Will he be able to figure it out? Will he be happy?

I've always said that all I ever wanted for my kids was for them to be happy, and adding this idea to my ponderings, I was reminded of something my brother once asked me. A toddling pre-walking Child 1 and I were hanging out at his house in the city a few months before he died, and I mentioned this idea, and my brother asked "what if what really made him happy was to be a janitor? Would you be okay with that?" Damn with the hard questions, dude. My honest answer was no, because I think he could do better, and how could being a janitor make you happy? (apologies to all the janitors and janitor's families that I'm currently insulting) to which my brother responded that if I really wanted him to be happy I would need to get rid of my preconceived ideas about what makes a person happy and be prepared to accept that my child might have his own ideas about happiness, even if it meant something I didn't agree with.

And, I thought about this while I watched Child 1 watching his beloved YouTube videos of BART trains and I thought: running back and forth flapping his hands, whispering about BART trains and making noises that sound like BART trains are what make him happy; as odd as that sounds to somebody without autism, it's just how it is. And he's going to carry these preferences with him into adulthood, and I need to be prepared to reject my own ideas about what makes for happiness and accept whatever he comes up with, because, more than anything, I want my kids to be happy.

Autism contradictions

2013-04-07T11:56:00.003-07:00

This is a repost of something I wrote almost 3 years ago.

I'm currently sitting downstairs in the TV room with Child 2 and I can hear coming from the kitchen the unmistakable sound of a chair being slowly dragged across the room. This only means one thing: there's something (probably cookies) on a high shelf that Child 1 wants and he is in there bringing the chair over to it so that he can climb up and grab it. The fact that he went in there by himself without saying anything means that he knows that whatever he's going for, he's not supposed to have.

Two things go through my mind in a time like this:

1. It's 5:15, he can't have cookies, we'll be having dinner soon. If he had asked me, I would have said no, which he knows, which is why he didn't ask me. He's being sneaky and devious, in addition to eating crap right before dinner. That's bad! I should go in there and catch him in the act.

2. There are many things involved in this kind of action. First, he had to spot the cookies on the shelf, which is a few feet above his head. That shows that he's paying attention to his environment. Second, he had to realize for himself that he wasn't allowed to have them and consciously choose to not ask me for them. He's thinking, he's weighing his pros and cons, he's (correctly) predicting the probability that bringing attention to his cookie plight will mean he won't get them. Third, he figured out, for himself, that dragging the chair over to the shelf and climbing up on it will enable him to pull down the box. He figured out the steps involved in getting the cookies down from the shelf, he worked out a plan and he's carrying it through, without any assistance. I remember, in ABA, working on these problem solving skills with him. Look, the cookies are on the shelf, what do you need to do in order to get them? First, get the chair, etc. We did that kind of thing again and again when he was 3, 4 and 5, I honestly never thought he would get it. And, yet, here he is, right now, dragging a chair across the room in the kitchen, all by himself, and getting the cookies down.

I'm pretty proud of him, actually. Good work, Child 1!!! Of course, I can't tell him that so, instead, I'm going to sit here and listen to the chair and let him get his cookies, even though it's 5:15 and we're having dinner soon.

UPDATE: It was a near perfect plan, but he neglected to return the chair to its proper place. I wonder how to tell him that without actually telling him that?

Song of the day: Beautiful Disaster

2013-04-05T22:17:00.002-07:00

I like this song. You know why? Because some people really suck

Today seems like a good day
to burn a bridge or two
The one with old wood creaking
that would burn away right on cue
I try to be not like that
but some people really suck
Some people need to get the axing
chalk it up to bad luck

Guest post: Kristi from Finding Ninee

2013-04-04T20:31:00.000-07:00

Today I am happy to be hosting my buddy Kristi who blogs at Finding Ninee. She can also be found on twitter at @FindingNinee

I stole this picture off of her site. heh heh heh:

I want to thank Jillsmo for allowing me to guest post. She is my bloggie crush. I found her when I was oh-so-new to blogging, lost in a world of not knowing whether it was okay to post about what it feels like to hear the word autism for the first time one day and post a really bad drawing the next. Her words and hilarious pictures saved me from worrying about what my blog was supposed to be. Her direct and honest voice about parenting a kid with special needs has made me feel less alone more than once. Jillsmo is awesome. (editor's note: SHUT UP!)

All I Need

Just a few short years ago, all I needed was a baby. Previous pregnancy and marriage failure brought me to learning to deal with having Advanced Maternal Age printed at the top of all of my pregnancy paperwork. Being pregnant at 40 quickly became all I need is a baby who ends up being okay. Put on bed-rest halfway through meant that I had a whole new set of worries. All I needed was for us both to end up being alive.

Although there were a couple of scares, I ended up giving birth to a healthy baby boy on the Fourth of July. He was perfect. I was perfect enough, having endured seeing the disgusting droopy hound dog that my vagina had become. We were alive. We were healthy. And we were “normal.” I was grateful.

As he grew, my son mostly met his milestones. He walked at 13 months. Not early. But certainly there was no need for concern.

The months went on and my son started talking a little bit. His first word was mama because obviously he likes me best. By 15 months or so, he was saying “mommy,” “daddy,” “bye-bye” and a few other words. He seemed fine. He seemed typical.

By his second birthday, I was worried. I let his doctor know that I was concerned that my little dude wasn’t speaking more. She asked me what he’d said and I proudly let her know that just two days ago, he’d said “truck fell down.” She assured me that having uttered a three-word sentence was really good for a boy his age. I let it go. I kept hoping he’d just start talking all of a sudden. That was the first and last time he’s said “truck fell down.” Still, it was easy to listen to opinions that everybody meets milestones on their own time-lines, that boys speak later than girls, and that boys who had been at home exclusively with mom spoke even later.

Before my son turned two and a half, it was obvious that his language was lacking. At some point, “bye-bye” had become “bah” and “Daddy” became “Cha.” It was clear that we needed to face the fact that our son was delayed. Enter Early Intervention, a developmental pediatrician, a speech therapist and me trying to figure out what was going on.

The word “autism” came up. “Speech and language delay” and “developmental delay” came up. Some of my son’s quirks seemed to point to autism. So I learned a bit about it. And I got discouraged when so many parents in that community were dealing with diet, sleep and immunity issues that were completely foreign to us. The other thing that didn’t fit was that my son makes eye contact. He loves to snuggle and looks to his father and me for approval.

There are times when he’s completely in his own world and I’m convinced he’s autistic. When he’s tired, my physical little boy runs laps while emitting a “eeeeahhhheeeeahhhheeeeahhh” sound. Seems like a stim. He’s still extremely speech and language delayed. He’s got sensory issues and gags or throws up when we brush his teeth. He doesn’t really understand how to properly interact with his peers. And yet, he wants to interact with them which makes it confusing and frustrating because that’s when it doesn’t look like autism. Enter all I need is a diagnosis so that I can give a name to it. Not having a name for it means that I don’t feel as comfortable talking about it. It means not having a community.

But the thing is, I wish we knew for us. All I need is not necessarily what he needs. What we do have is one kick-ass awesome little boy who makes progress every day. We have a school system that is willing to ignore our lack of a diagnosis and place my kid in ABA therapy because they can see that it’s working for him. What we do have is awesome bloggers and a community of online people who are willing to offer advice, encouragement and cyber love.

So for now, I’m content to simply need the knowledge that we’re doing the right things for our undiagnosed little boy. And for now, that’s enough.

10 years

2013-04-03T00:00:00.000-07:00

April 3, 2013. This is the 10th anniversary of the day my brother died of cancer.

I don't even know what to say. It's been 10 fucking years. Here are some things I've written about him before:

In the last 10 years, my brother has missed Child 1's first steps. He missed Child 2 being born. He missed them starting to walk and talk, and then going off to school. He missed me starting this blog and being almost internet famous for a while there. He would have fucking loved that one. I keep wondering how many Facebook friends he would have, for some reason. Thousands, probably. But he probably would have created something like that of his own and would have been much more popular. More popular than Facebook. If anybody could have done it, it would have been him.

Anyway, I don't know what to say, I just wanted to turn my only public platform over to the fact that it's been 10 years. Fucking 10 years.

Why "Blue" is not for me

2013-04-01T14:47:00.001-07:00

Oh my GOD it's another post about Autism Awareness Month. I know, I KNOW... these are so annoying, and they're EVERYWHERE. Okay, just bear with me.

First of all, a disclaimer: This post is not meant to be a self-righteous lecture about how you're wrong for making the choices you make, it's just my opinion on the subject. If you've chosen to go blue this year, I fully support your choices. I won't fault or shame anybody for not agreeing with me, because I think that makes things even worse. Having a different opinion doesn't mean I'm right and you're wrong; it just means that our opinions are different. When having a discussion about these issues, I think it's important to acknowledge that this can be some really hard stuff to talk about. We feel passionately about these issues, but in the end we all make the choices we think are best for our families and ourselves. Please try to remember that as you traverse the internets this month.

So, anyway: my point.... I will not be "lighting it up blue" this year, just like I haven't in previous years. Last year I think I just completely ignored it. The year before I said something sarcastic. (Right??) I figured this year I would tell you why.

First of all, I don't think that one day or one month of having blue lights on at your house does much good in the long run. Sure, you can change your Facebook picture to a lightbulb, and then all of your Facebook friends will know that you "support autism awareness" for that day, but what good does that actually do? What's important, in my opinion, is how you live your life the rest of the time. If you read this blog, follow me on twitter, are friends with me on Facebook, or know me in real life, I'm pretty certain that you're already pretty aware of autism. I talk about it a lot on the internet. I advocate for my son and the other kids in our school district every day of the year. That is the extent of my reach, however, and changing my avatar or my porch lightbulb isn't going to make somebody aware who wasn't already aware. Plus Facebook memes make me uncomfortable. I don't really know why. At least the ones that aren't sarcastic.

But the real issue I have this year is that Blue is not an inclusive awareness campaign. Blue is for the parents of autistic children. Blue is about the autistic kids and it ignores the voice of the autistic adult. If you're going to have a true awareness campaign, you need to include all people impacted by autism, and that ranges from the nonverbal child with self injurious behaviors all the way up to the articulate adult who writes books and gives lectures. A true awareness campaign needs to include everybody, and in my opinion, Blue does not.

In addition, Blue brings with it a sense of urgency: "Our 1 in 88 can't wait!" Blue uses words like "suffers from" and "afflicted with." Blue implies that autism is a beast that needs to be fought. One of my friends tells me that whenever she hears about Blue she pictures a giant puzzle piece monster trampling towns and villages and bringing fear and panic to its citizens. (I made her that picture you see up there). Yes, it's true that for some people autism actually is a monster that came into their home and destroyed it, but for most autistic adults, that is so far off from how they feel. Autism is not something that "happened" to them, it's who they are; you can't separate a person from who they are, it just doesn't make sense. A campaign to separate you from yourself in the name of awareness? I can hear the buzzing from the cognitive dissonance all the way over here.

Bottom line, if your goal is to bring awareness to autism, all of this needs to be talked about. The issues that face parents of autistic kids are different from the issues that autistic adults face, but you can't just pick one over the other and ignore the rest. It's all autism, no matter who we're talking about, and an awareness campaign that excludes part of its own population completely misses the mark. This is what I think Blue does: I think it misses the mark. And that's why Blue is not for me.

Everybody thinks it won't be their kid

2013-03-26T11:37:00.001-07:00

I've been thinking a lot about bullying lately. Well, the truth is that I think about bullying all the time, but there have been recent internet events that have gotten me remembering back to my middle school days. See, I was bullied in middle school by the "popular kids," the Mean Girls. I won't go into detail but suffice it to say it left an impression on me that took years of therapy as an adult to work through. Lately, though, I've been reminded that people can be really, really horrible to each other, no matter how old they are. It's a shitty reminder, but perhaps necessary at times so that we don't become too complacent.

At any rate, my personal experience with bullying is the main reason why Child 1's enrollment in middle school has filled me with such intense anxiety. There's no question that he will stand out as different, I'm sending him off into this potential cesspool of evil and I'm terrified of what might happen to him there. Something like what happened to me. And I can't protect him, I just have to send him there and hope for the best.

"Hope for the best," meaning I'm hoping that other parents have made an attempt to teach their children not to fear difference, and even if they do feel fear, that they won't react to it by being mean to my kid. But how much control do we actually have, are parents, over what our kids do once we send them off to school? Kids behave differently in groups of their peers, they want to feel accepted, they don't want to be different. So will they just go along with what their friends are doing? Will they participate in the bullying so that it doesn't happen to them?

Last week I went to a PTA meeting where the topic was about the district's Welcoming Schools curriculum. It's an anti-bullying program that focuses on teaching kids about gender difference and family diversity. I think the program is fantastic, it's necessary and awesome and I'm proud of my district for adopting this curriculum; approximately 1 in 38, or more, school age kids have gay parents.* However, if recent CDC numbers are to be believed, 1 in 50 school age kids are autistic and yet... my kid doesn't get a curriculum. They address ability awareness in the Welcoming Schools curriculum, but it is not its main focus. Until there's something specific happening in the schools, we have no choice but to rely on parents like you and me to do the work.

At the meeting last week, the leader (who was awesome) explained the work that they do with kids, about how having these conversations is what leads to acceptance, and I was struck by something she said about bullies: "Everybody thinks it won't be their kid." We all do our best to teach our kids tolerance, and we think that we did a good enough job so that when push comes to shove, it won't be my kid doing the bullying. My kid knows better. My kid wouldn't do that.

But would it be your kid? Will it? Do we really know? As much as I know I've done my best to make sure Child 2 won't be "that kid," I don't really know what he does on the playground with his friends. I have to make sure to have pointed conversations with him about what it means to be a good person and a good friend. So, this post is for the parents of typically developing kids, who are doing their best to make sure it won't be their kid: Please have a conversation with your child about mine. Tell your kid that my kid likes to flap his hands, run back and forth, and talk to himself. Tell your kid that they might see this happening and feel uncomfortable because they don't know what's going on, and tell them that it's okay to feel uncomfortable, and they can ask questions, but it's not okay to make fun of him. It's not okay to call him names, or point and laugh, even if their friends are doing it. Tell your kid that my kid does these things because it makes him feel good, and while that might seem weird, it's totally okay.

And how about your behavior at home, because you know that kids learn by modeling what we do. Do you laugh at people who are different? Do you call people retarded? Do you gossip about other people who aren't able to defend themselves? Your kids are watching you, and while you think it might be perfectly benign: is it? Do you want your kid to do the things that you do? Because they will, and when they do, you don't get to say "but my kid would never do that."

Please talk to your kids; make sure they know. Because I'm about to send my child off to the wolves, and all I can do is hope that you guys have put in even a fraction of the time thinking about this as I have. You can't just assume it won't be "your kid," you have to make sure. Please. Make sure.

If you need any help or any useful resources that might help you have this conversation with your child, please let me know. I'm happy to help. jillsmo at gmail.com

* "Researchers commonly cite the estimation that one to three million American children are being raised by lesbian, gay male, bisexual, and transexual (LGBT) parents" from Families Like Mine: Children of Gay Parents Tell It Like It Is. (Thanks to Erin from The Gay Dad Project for your help). There are approximately 76 million children living in the US, according to ChildStats.gov therefore 2 million in 76 million = 1 in 38.

Sometimes it just does that

2013-03-24T16:29:00.000-07:00

Do you guys remember my toe problem? I thought I had kicked a chair or something when I was drunk and broke my toe? You remember, it looked like this: (or probably you don't remember because who really gives a shit?)

Right? Anyway, it wasn't getting any better, so I got an x-ray and it wasn't actually broken. So, I figured I'd just try to stay off it and it would get better on its own? But then I noticed it was starting to look even worse; like this:

at that point I figured I should go and see a Foot Doctor and see what the hell was actually going on in there.

So, last week I went off to the Foot Guy and he very quickly diagnosed me with having a pinched nerve in the ball of my foot; the technical term is Metatarsalgia. You don't need to know the specifics, it's a pretty boring foot problem. Anyway, he's telling me about it, and I ask what causes it, right? He tells me that there are a number of factors that contribute to this particular foot problem, but the basic cause is "sometimes it just does that."

Sometimes feet just do that, I guess. They get painful and then your toes end up all deformed and freaky looking. That just happens sometimes, he says. The cure for metatarsalgia? Well, that depends on how much you actually want to use your foot. Just plain old regular walking around? Might not even be worth it, because you need to spend $$$$$ on expensive orthotics in order to fix it. See, I tend to use my feet for more than just regular walking; I like to do that fancy walkin. The kind sidewalks aren't made for, so I need to actually spend the $$$$$$ to fix this fucking thing.

It reminded me of Louis CK's bit about getting older. You really need to watch this video, especially if you're over 40, because you will laugh. your. ass. off.

EDIT (fancy walking):

Somebody needs to help me write this book

2013-03-21T10:03:00.002-07:00

Child 2 is getting to that age where he's starting to ask questions about his brother. Up until now, we've been living with "that's just what he likes to do" and similar answers, but regardless of the lack of judgment we put on his brother's behaviors, he's still noticing that he has a brother who isn't exactly the same as the other kids he knows.

Which is fine, of course. Kids are going to notice things like this and it's our responsibility as their grownups to make sure they get the information they need in order to be a good friend/sibling/partner in crime. So it was with this in mind that I went out and bought a book for him, called "Everybody is Different. A book for young people who have brothers or sisters with autism."

I haven't really had a chance to go through it yet, but it seems like a very sweet book, with sections titled "the three characteristics of autism," "odd behaviours" (it's British) and "so how are you feeling?" As I browsed through the chapter titles, thinking about how I was going to be reading this with Child 2 at some point in the near future, I thought: Why isn't there a book I can read to Child 1? Surely Child 1 has, also, noticed his brother's seemingly odd behaviours? How come he doesn't get a book I can read to him, to explain HIS brother?

So I've decided to flesh out an outline of this new book that needs to be written. Maybe somebody with actual writing skills can help me make this thing a reality.

Part 1: What is "being neurotypical"?

a. Why are some people neurotypical?

b. General behaviours

c. Is there a cure for being neurotypical?

Part 2: Odd Behaviours

a. Why doesn't my brother or sister ever stop talking?

b. Why does my brother or sister want to play with other kids?

c. Why doesn't my brother or sister like BART trains?

d. Why does my brother or sister keep asking me questions when I don't want to answer them?

e. How can my brother or sister be in the same room with parmesan cheese and not want to throw up?

f. Why doesn't my brother or sister understand how awesome elevators are?

Part 3: So how are you feeling?

a. What you can do

b. Will my brother or sister always be like this?

c. Does your brother or sister ever embarrass you?

What do you guys think? Can you think of anything I left out?

Here, I got us started with a cover: