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

Wednesday, May 29, 2013

It's even worse than it appears, but, it's alright

I discovered my first gray hair when Child 1 was in his first few weeks. I've always felt the timing of that was rather suspect. Just had a baby and out pops a gray hair? How cliché.

I immediately summoned Hubs to come and pluck it out for me, which he did, and instantly I was young again. No longer plagued by The Gray I no longer had anything to worry about.

John, my hairdresser, told me that hairs grow out of your head gray, they don't turn gray after they've already grown. This means that this particular hair didn't appear after my child was born, it had been growing for a while and I just happened to notice it at that time. I'm still not sure I believe that, because what kind of powers of observation do you have with a 2 week old baby at home?

The weeks and months went by and every few of them I would continue to find the errant strand. Eventually I got good at pulling it out, myself (along with twenty of its regular colored neighbors) which I did, every time. And every time the youthful status quo was restored and all was right with my hair and the world.

I complained to John about the constant hunting through the strands and how annoying it was that they kept coming back again and again. John, who is a few years younger than me, very very straightforward, and whose hair is quite salt and pepper, told me "WAHHHHHHHHHH. You're 40 years old and you're complaining about the occasional gray? You're fucking LUCKY." Well that shut me right up.

Today I looked in the mirror and realized that there were just too many of them in there to pull. I couldn't get them all out, it just wasn't going to happen. This was when I realized that my hunt and pluck method was no longer going to work, I'm going to just have to let them in. These hairs are no longer occasional. I suppose I could dye, and maybe one day I will, but I've never dyed my hair before and I'm not entirely sure I want to start.

I guess I'm just going to have to accept this new reality, 11+ years after I'd spotted my first one. This is how my hair is now.

I'm going to have to start drawing myself differently, too, I guess.

Tuesday, May 28, 2013

Independence and worry

I'm a worrier; I worry. This is no secret to anybody who knows me well. I worry about my kids, I worry about my family, I worry about my friends. I lie awake nights thinking about all the people I love and the various issues they have and sometimes I wish so much that there was something I could do for them that I can't sleep. But all I can do, most of the time, is tell them that I love them and hope that they'll be okay.

With my kids, of course, it's a different story. I don't or can't just lie awake and hope for the best, I'm in charge of the things I worry about. Okay, there's nothing I can do about earthquakes, but for the most part I'm in charge. It's my responsibility to make sure they're prepared for what faces them and a lot of the time what I worry about is that I'm not doing a good enough job at that.

Lately I've been thinking (worrying) a lot about independence, in particular with Child 1. This is, of course, something all parents worry about for their children but for an autistic child the worry is much different. He's 11 now and ever since the Resource Specialist said the words "diploma track" at our last IEP meeting my mind has been consumed with "what happens when he gets older?" We're still struggling with basic hygiene right now, can I possibly imagine that one day he might live independently of me?

It has always been my instinct as a parent to not try to "micromanage" my kids' lives. I like to give them plenty of freedom to make their own decisions and find out for themselves what kind of people they are. Child 2 doesn't like sports, even though every single one of his friends does, so I'm not going to make him do sports. If he doesn't want to he doesn't have to; he'll find his own activities that he likes. But it's different with my autistic kid because his preferences are so limited. He doesn't just not want to do sports, he doesn't ever want to leave the house unless it's to go watch BART trains. He has no interest in making friends, he has no interest in any kind of group activity, he doesn't even have any interest in learning personal hygiene.

So, okay... so far I've been going along respecting his wishes because I'm not going to force him to do something he doesn't want to do, but now... the worry. What if I'm making a mistake? What if, by not insisting he, at least temporarily, leave his comfort zone to try new things, he'll never want to leave the house for any reason except to watch BART trains? Will he be an adult, living in my house and never leaving?

I read my friends' blog posts and Facebook updates, and I see all the therapies and social groups and activities that everybody's kids are doing, and my kid is doing none of those. And that's because he doesn't want to, but should that choice necessarily be his? When he was 3 he certainly didn't want to participate in our ABA-based home program, but he was 3 and nonverbal and I didn't give him a choice. As a result I'm 100% convinced that if it hadn't been for that program he wouldn't be the exceptionally smart, verbal, sweet child that he is today. He wouldn't have been able to make all of this progress without that program, the one I "forced" him into against his will.

So maybe now I'm just making a mistake. Maybe I need to insist that he participate more in the world, in order to prepare him for his future as an adult? Maybe by giving him too much personal freedom I'm actually doing him wrong??

I know it's so easy to say "you're doing the best you can and he'll find his own way" but... will he??? Nobody can predict the future, all we can do is prepare for it as best we can. I'm worried I'm not doing enough to prepare him for it.

Monday, May 27, 2013

Wandering backlash: One mom's response [Guest post]

Today I am more than thrilled to be hosting a guest post written by my friend Jo Ashline. I thought about giving her a lengthy introduction but I think her gorgeous words speak for themselves.

Andrew loves to explore the world. And we are never far behind.
We try.

We try so hard.

We are honest, open, willing to divulge our deepest regrets, our highest hopes, our most intimate fears. We do so for many reasons; the most important, the most worthwhile is to connect with parents and families like ours and educate those who will – at some point in their lives – encounter one of our loved ones on the spectrum.

We compromise. We apologize. We make every attempt to consider everyone’s perspective, even when it’s not humanly possible to please everyone. Still, we give it the old college try because God forbid we write about the one thing we know best: Our Lives.

Yet, no matter what we say, no matter what we write about, there’s always someone waiting in the wings, rubbing their hands together in earnest, ready to point out our faults, prey on our weaknesses, discount our personal experiences and twist our truths into something ugly and false and demeaning.

I, for one, have had enough.

Last week autism parent bloggers across the nation banded together to honor three young children with autism who tragically lost their lives to wandering. Each one had, in a matter of seconds, managed to escape their safety nets; all three were later found lifeless in a body of water.

Their families, already facing the worst kind of devastation, became the focus of unimaginable condescension, scrutiny, and judgment from individuals who had no idea what they were talking about.

So we turned on our laptops, logged onto our respective blogs, and began chronicling our own experiences with elopement, wandering and bolting in an effort to educate others and empower the victims’ loved ones as they faced their incredible loss.

And then, once again, it happened.

Comments were left that questioned our motivation; assumptions were made about abuse; fingers pointed at imprisonment; voices lashed out, accusing us of mistreating, misunderstanding, mismanaging our children.

We were ridiculed, insulted, ostracized, targeted, and told, in no uncertain terms, that we were irrevocably damaging our offspring.

And yet, no matter what anyone out there has said, or continues to say, the truth remains. It’s a funny thing about truth; it doesn’t go away, just because someone wants it to.

My truth is as follows:

Your stinging words, your crucifying comments, your unfounded accusations of abuse have not stopped my child from eloping or wandering or bolting this week; not once.

Your judgments and finger-pointing and uninformed assumptions have not made my vulnerable, innocent, little boy safe this week; not once.

Your naïve suggestion to change the way we think about wandering, to allow it to naturally take its course and watch it resolve before our very eyes has not kept my son from attempting to run into a busy street filled with cars this week; not once.

Your derogatory deviations from the reality we live each and every day have not halted my son in his tracks this week, while he made his way towards a swimming pool that would swallow him whole if only given the chance; not once.

You are not the hands that guide him away from danger; you are not the arms that grab him before tragedy strikes; you are not the heart that pounds when you realize how just how close he came to a tragic ending.

You do not live this life of mine.

You do not hold your breath as you guide my child through weaving crowds, wide open spaces and treacherous terrain known as the outside world, exhaling only when he is back in the safe confines of a home designed to deter Fate and Odds from thinking they can get one over on you.

You do not lie awake at night, waiting for fitful sleep to arrive and grace you with the very nightmares you work so hard to prevent when you are awake.

You are not the one who knows that safety is just an illusion, designed to make you think you can finally let your guard down, only to be faced with the certainty that somewhere, someday the bubble you’ve carefully constructed will burst and you will spend the rest of your life haunted that you didn’t do enough.

You do not live this life of mine.

There will be no compromising; no apologies. There will be no excuses, no desperate attempts to meet anyone halfway. There will be no explanations that I’m doing a good job, no efforts to convince you that I love my child.

Unless you are living my life today, unless you are the literal difference between my son’s life and his untimely death due to wandering, then you and I have nothing more to discuss.

I am not sorry for the steps I take to keep my son safe; I do not regret the locks, the stroller, the wheelchair, the gates, the alarms, the snug embraces.

I do these things so that I don’t have to one day face the ultimate regret: that I didn’t do enough.

So this is me, elbow deep in my truth. Nothing you can say about me, or write in the comment section of this or any other blog post I write will change that.

You do not live this life of mine.

So let it be known: I do not care what you think about the way I raise, protect, and love my wandering son with autism.

Now you’ll have to excuse me.

I have a child to catch.

Friday, May 24, 2013

Sick of it

I'm sick of judgment.

I'm sick of the high horse.

I'm sick of high and mighty; of "I'm better than you."

I'm sick of the double standard.

I'm sick of being mocked, for who I am and not because of anything I've done or said.

I'm sick of bullshit, non sequitur semantics arguments.

I'm sick of being made the bully, while others make themselves the victim.

I'm sick of the rallying cry, "come see what this person has said about us!!" while the sycophantic crowds follow.

I'm sick of being the target of somebody else's projections.

But mostly I'm sick of the ignorance. You don't know me. You've never met me. You've never even spoken to me. You've never even tried to communicate with me, and yet you think you know me? You think you know what I think? You don't know shit. You know nothing.

You want me to be your "ally" ? How about YOU FIRST?

I've tried to be reasonable. I've tried to see all sides. But all human beings have their limits and you have pushed me to mine.

I'm sick of being made the enemy. I'm sick of being made the fool; by angry people who do nothing but play out their mommy issues with anybody they encounter who has the title of "parent."

That's not "advocacy." That's fucking irrational insanity.

You don't speak for my child.

You're not a fucking civil rights movement.

You speak for yourself. That's all you do.

And I'm sick of your shit.

Also? I'm turning off comments, because I'm no longer interested in your opinion.

Wednesday, May 22, 2013

Proud of my boy

That says "nuzzle nuzzle." A very common occurrence in our house, although we almost always have faces at the time.

Child 2 has an assignment for school. It's to take a scenario that his teacher chose and write a story from it: his scenario is a student sitting at a table with a teacher.

His story is about this student who got into trouble for punching another kid and is now having a "conference" with the teacher about the incident. The kid (who doesn't have a name that I can tell) "acts very angry all the time." It was his first day at a new school, he got into a fight with another kid, and he punched him. But this nameless boy's father is sick and the boy has gone to stay with his grandmother while his mother and father go to a different state to seek treatment. Nobody at his new school knows about his parents, they just see that he is angry all the time. The reality is that he's scared and upset and worried about his parents, but it comes out like anger because that's how he expresses himself, and maybe if he could make some friends he wouldn't be so angry all the time.

I'm so goddamned proud of him. At 7 he already has more empathy than most adults.

Tuesday, May 21, 2013

Getting the last word

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. :)

Sunday, May 19, 2013

In Memoriam

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.

Sunday, May 12, 2013

Happy Mother's Day!

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






"Happy Mother's Day, Mama!"

I hope you guys are also feeling the love.

someecards.com - Happy Mother's Day to all my bitches.

Wednesday, May 8, 2013

Wordless Wednesday: "Mysteriously farting curtain"

Monday, May 6, 2013

Standardized testing

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'."


Wednesday, May 1, 2013

A dog analogy

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.