pollychromatic

the world through rainbow eyes


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The Lines In Her Mind

Her hands are tiny birds that fly from here to there. The nimble fingers are bird wings that fly her to this wall, then to that one, over her shoulder to the counter next.

“She’s always dancing,” we tell people, and smile. We think of her inability to sit still as a precocious mind unable to be quieted, always moving. So she moves with it.

It is tiring, though. I just need her to brush her teeth so she can take a shower and get on pajamas and go to bed. Still, a half hour later, her hands are in flight. Her toes dance, too. Daintily she touches her toes to the floor in specific rhythms only she hears. Tap here, tap there. Twirl. Tap there. Her belly follows as she touches her body to the wall carefully.

I stand there holding the toothbrush with toothpaste already on it. “It’s time to brush your teeth, Pi,” I say for what feels like the hundredth time. She doesn’t hear me, it seems. Continuing to dance around the 5 by 2 feet of bathroom space.

“Pi? Hello? Let’s get your teeth brushed.” She startles but continues to dance. I get down on the floor, putting the toothbrush down.

“Why are you doing this?,” I ask her. “Is there some reason?” I caught her right after the last set of dancing hand flights. She looks me square in the eyes, and her eyes widen in shock. She crumples.

“Okay. I’m going to explain it,” she says. “There are lines I have to follow…”

She then went on to explain that she “sees” lines everywhere. That she feels she must follow the lines with her hands, sometimes also her feet or body. That she knows she doesn’t have to, but also knows she must. That she knows the lines aren’t there, but also knows they are.

She says the lines have always been there.

She says she’s sorry. She cries.

I hold the tiny 6 year old body that is my beautiful, intelligent, and yes, always sensitive and anxious daughter and tell her that it’s okay. That she can do the things she needs to do and it isn’t wrong. That it is her brain that is firing incorrectly, and not a thing that she is doing wrong. My smart girl understands this as I explain. She is relieved.

I tell her that we can do something to try to stop this. The next few days more things spill out.

The glow in the dark stars that we carefully set around her bed have been keeping her up at night wondering if they are maybe-possibly lasers. She knows they are not, but considers what if they were? The intrusive thoughts of Maybe They Are, But I Know They Aren’t fight it out for hours as she tries to go to sleep.

We remove the stars. We make appointments. I am heartbroken that such a heavy burden has been put on such a small child.

I am angry that she has to first see a counselor because that is all that is available to her in network. Yes, therapy perhaps, but also medicine. OCD is not something she is doing wrong. It’s something that is working incorrectly in her brain. While diabetics do need nutritional therapy, no one suggests that as a first and only step. Their pancreas is not working. They need insulin, and they need to be able to process it. Medicine helps both.

Why do we not treat the brain as we treat the body? It literally is the body. Why is this so confusing for so many people? Pi understood it immediately.

Our first appointment is on Thursday. Today is Saturday.

I’m waiting on some thing. Some solution to her flying bird hands, and laser stars. She’s waiting.

We wait together.


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The Herd of Gazelles at the Bus Stop

Pi and Phi are 5 now. They attend Kindergarten (two different classes so they can both shine their stars individually as bright as possible). They both insisted that they are old enough to ride the bus to school, and because the bus is actually available to them now that they are in Kinder, I agreed. So they ride the bus to school every school day morning. 

I drop them off and watch them interact at the bus stop with the other kids. They’re the only Kinder kids in our little neighborhood, so mostly the big kids are leaving them alone and letting them run around like animals waiting for the bus. 

Run around they do, too. Every single day, they drop their packs in the bus shelter and then have races from one sign to the other. About 200 feet of a race they do over and over until the bus gets there. Squealing, rambunctious, and overall dorky. Phi runs with his hands clutched high to his sides, a bit like a T-Rex. A smile of pure happiness. His feet hit the ground with the strange, awkward, delicate gait so familiar to other parents who have children on the spectrum. Toes pointed down, still somewhat clompy somehow. Like an elephant doing ballet. So happy.

Pi’s arms are thrown back and her clomping hits whole foot down, her face also has the same smile. So happy. She is a gazelle. 

The other kids are mostly silent while Pi and Phi enact these daily races. Pi and Phi encircle them, run between them, around them, near them. You can see the other kids pull back, stare at them. I want to tell Pi and Phi to chill. Be cool. The kids are judging them. I keep my mouth shut. One kid does a mock tiptoe of Phi to his other friends, and they cover their mouths to smile behind their hands. They know better than to laugh where parents can see them. Phi doesn’t notice, just keeps running. Keeps being happy. 

I want to scream at these kids. You think it’s awesome that you can run better than him? Running is hard for him. He’s a different animal. You are gazelles, and he is an elephant. His squealing trumpet of glee comes from a differently shaped throat than your own. Is it such a point of pride that yours was shaped different? Do you work for hours to make your gazelle throat shape the sounds that all the other gazelles make? 

No he does not have grace. What he has, instead, is hard work. He has perseverance. Thank goodness that’s part of the package with Autism. The same thing that makes him line up puzzles for hours is what makes it possible for him to make words that others understand. He works past the point of wanting to stop. I am furiously proud of his words. 

I remember his testing, and them asking us for a list of his words. For a week we tried to put together even ten words that he said at the age of 18 months. Duck. Ball. … Umm.. Daddy? We struggled to find any words that he had actually said. Now, at age 5, his vocabulary is huge. He inherits the wide breadth of spoken word that his father and I use daily, and it shows. 

But the kids at the bus stop don’t see that he is a hard working elephant stuck in the land of the graceful gazelles. They see that he is not part of their herd. They close ranks. 

So he runs with Pi. Pi who doesn’t care, yet, about gazelles and elephants. All animals are different to her. She takes it in stride. 

I want the other kids at the bus stop to see what she sees. I want them to feel the pure joy that he feels. 

I’m proud of my mismatched animals, and so furious at the herd that closes them both out. I know that in their classes there are other mismatched animals, and they find them and befriend them. The herd at the bus stop is not their whole world of experience, but only a small window onto it. 

I also know that the herd at the bus stop is going to grow. That as they get bigger, it will become more and more evident how different they both are to the herds they encounter. Him for his everything, and her for her acceptance of these things and for her own differences. That the ruthlessness of peers will run their world for the next fifteen some odd years. There is not a thing I can do to change it. 

I know that they are going to spend their lives collecting their own herds of mismatched animals. I hope they do not spend too long trying to assimilate into herds that are not their own and do not accept them. I also feel sad for the limited scope of the herd of gazelles at the bus stop. They have not yet learned the value of the different animals. I hope they learn it someday. 


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7 Things About Pictures of Kids Online

I have a lot of friends who are photographers. I don’t mean the kind of people who take a bunch of pictures. I mean, honest to goodness, saved up bunches of money for the good equipment, spend lots of time on it, these are actually beautiful, photographers.

I also have a lot of friends who are parents. Some are both. Most parents end up dabbling in photography to one degree or another. It’s part of the territory.

You take pictures of your kids. You take them for you, and you take them in trust for your children when they are adults and want to see pictures of their childhood. You take them for family spread far and wide. You take them for friends. You take them because when you look at your kids, you overfill with pride, joy, and love. You want to give that to everyone. To share a bit of what you see when you look at your child. If you happen to fall into the first category also, your pictures also happen to generally be enjoyable for everyone.

Most people enjoy pictures of kids, though. There’s no real artistry needed. We were all kids once. If our childhoods weren’t ideal, then we generally are happy to see pictures of kids where that isn’t true. It’s a sort of reset on hope, you know? If our childhoods were good, then it’s a reminder of that.

Because we live in the FUTURE! we’re lucky enough that we can share the heck out of these pictures in a way that isn’t too onerous. There’s no more slideshows of the family vacation that you don’t care about. There’s an album online, and you can skip it or not. For the family and friends that are scattered far and wide, though, it means staying connected to each other and each other’s families in a way that only neighbors were able to do in the past.

Which is wonderful and awful all at once. I’ve already said some of the ways that it’s wonderful, and lots has been said about the different ways it’s awful, but one of the ways it’s awful really needs to be addressed.

See, I’ve had several friends now that have had their Facebook accounts flagged and their pictures flagged because somebody deemed that their pictures that they took of their lovely children were in some way inappropriate. By and large we are talking about pictures where you can’t see anything other than the fact that the child is probably naked. Maybe. Under the censored bits. Or the bits that aren’t actually in frame.

So the pictures and accounts are flagged, because hey, we don’t want pedophiles to see the pictures and target our children. Which, hey, is such a mixed bag of myth that I don’t even know where to start with it. But I’m going to.

Before I start though, I am going to say that yes. There are some very bad parents out there. Some parents who do, in actuality, want to pimp their children out. We’ve all read the news, and we know that it happens. It’s baffling, and horrific, and goes against every basic instinct of loving and protecting children, of basic human decency, that the vast majority of us operate with, but it does happen. I’m not talking about that today. I don’t know that I ever will. You go somewhere else for that, okay? That’s beyond the scope of my ability to talk about in a sane and rational way.

I’m going to give a list of reasons why you shouldn’t worry so hard about innocent pictures of innocent children.

1. This is not the child pornography that you’ve heard about online. 

This makes me sad to say, but your innocent bath picture of your kid with a washcloth on, or blurred  bits, or heck, even without it is not the child pornography that the pedophiles are looking for. This kind of wanders into the area of things I didn’t want to talk about because it makes my head break open and all the tears fall forever, but there are horrific photos of children online. Lots of them. Whole awful, pustulent  corners of the internet dedicated to just that. The pedophiles want those pictures.

2. The vast majority of sexual molestation is done by people you know, who are actually in your everyday life.

It’s stepparents, and grandparents, and parents, and the parents’ boyfriends or girlfriends. It’s friends of the family that you have over for dinner regularly. It’s uncles and aunts and cousins. It’s your children’s friends’ parents. It’s counselors and priests and neighbors. It’s not strangers from the internet who happened upon your child’s pictures. That is so rare that it is beyond statistical ability to enumerate.

3. You can not make someone suddenly have a sexual interest in children. 

This is something in them. This is not something you do. This is not something that your children do. This is a wrongness in that person. You can dress a child up in the sexiest of clothes, and give them the most dazzling make-up job, and there is not a single right-headed individual that is going to have a sexual thought about that child. Because it’s a child. Because you have to be wrong-headed to look at a child and find them sexual.

4. The people who look at children and find them sexually enticing do not need the children to be naked.

This is just another form of blaming the victim. It’s likely born of the same “I can keep me and mine safe” thoughts, too. People who abuse others sexually are not enticed into it. This is a wrongness in them. It’s not something that the victim can make happen. Pedophiles find children sexually arousing, clothed or not, because of the defilement. Because of the abuse of power. Because they can. Fully clothed, or genitals actually showing, it’s all the same because what the abuser is looking to do is hurt the child. Children could go through their entire childhoods fully clothed even for baths and there would still be sexual molestation, sad to say.

5. You keep your child as safe as you can from sexual molestation by teaching them that saying no and getting help is always okay. Always.

There’s been a lot of talk about this in the mommyblog world for a while. All the different ways that adults undermine children’s bodily integrity and right to say no. We tell them that they have to kiss grandma or give us a hug, or tickle them beyond when they say no. We tell them that they’re wrong when they say they feel a certain way about something or that their feelings do not matter (and yes, I know that their teeth need to be brushed even if they don’t feel like it, but that doesn’t mean their their feelings about it don’t matter). Whenever we tell them that they have to do what grown ups tell them to do, or that what they think is immaterial, we are undermining our children’s basic safety system.

6. The vast majority of sexual molestation is done by people you know, who are actually in your everyday life. 

Can I just mention this again? Because yeah.

7. There used to be a lot of pictures of kids naked and we didn’t think anything of it.

A lot of us who are in our 30’s or older come from a time when just about everyone had pictures of themselves as children or babies naked in a bath, or on a rug, or any of a number of other regular everyday kid things that nobody thought was somehow enticing to pedophiles. Heck, in my day, it wasn’t all that unusual for a little kid to run around in the neighborhood naked. It was discouraged, sure, but nobody thought the pedophiles were waiting with baited breath on the doorstep for some naked kid to snatch up.

These weren’t the good old days. Don’t get me wrong. Nobody also thought the pedophiles were in their family. Or at their church. They thought it mostly didn’t happen, and if it did it was strangers snatching kids up. Which we mostly know better of nowadays. Right? Right.

Now, I can’t tell you if the incidence of childhood sexual abuse has truly gone up or down in the last 50 years. The facts are that it has historically been an under reported crime because it is a crime that is perpetrated on those who are the most voiceless in our communities.

I can tell you that the incidences of strangers kidnapping children to do harm to them has not gone up (and you’ll notice in there that the most statistically dangerous people in children’s lives are actually the parents, which is sad and horrible, but there it is). So there it is. Please stop worrying about pictures of kids online that are normal pictures.

Change your focus to teaching children that they have the right to say what happens to their bodies, and that if someone tries to do something to them sexually, they can safely get help. You can (and should) teach them that it isn’t their fault if something does happen, and that consent is always necessary. You can teach them to speak up if they see others being abused. You can get involved in helping to stop childhood sex trafficking. You can do any number of things that actually help reduce the problem. But you can stop worrying about pictures that you or your friends post of their kids that are perfectly innocent. If it really riles you up, teach them about privacy settings. Or talk to them directly about it (that’s part of that whole reducing the issue, right? Right). Hey, maybe they didn’t notice that a little bit more is showing in that picture than they thought.

And finally you can do what everybody else does with the thousand and one other pictures of pets, food, or kids that shows up in their feed.

Skip it.

 


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GoldieBlox Vs. What, Exactly?

GoldieBlox and the Beastie Boys. What a freaking mess. Right in the heart of the intersectionality between feminism and parenting. Add in copyright legalities. Add in free speech. Add in artistic expression. Add in the free market.

Really, what a mess.

So where do I start?

I’ll start with who came first. The Beasties. Hey there Beasties. Oh how I love you.

I was 14 when Licensed to Ill came out. I loved it unashamedly. It was probably the very first hip hop that hit me in the suburbs of Northern California. I mean, there was the stray shot of rap that was White Lines, but really. It was all about the Beastie Boys when it comes to bringing hip hop to most of white America. That’s what started it.

I loved “Girls.” I don’t even cringe at it nowadays because that love is so strong. We shook our teenage asses to that song because it was freaking fun. Because. Because reasons. Because, listen.

It’s hard not to shake to that.

It does not even matter how horrible the lyrics are. Sometimes we just like horrible things.  Let’s be real, though. When I was 14 I did not know how horrible it was. It was just catchy, and I was just dancing.

That love continued, too, even though the Beasties evolved so much over time. I loved their new stuff (hey, if you don’t think Paul’s Boutique is one of the most perfect albums to ever come out, you don’t know music), I loved their old stuff. On the run up to getting the scan done to find out the sexes of my twins, “Girls” was one of the ringtones that I had one my phone for a solid week.

It’s just a solid riff, and as much as I am a staunch feminist who completely rejects the message of “Girls,” I’m also the girl who shakes her ass to it.

So there’s that.

Then there’s GoldieBlox.

Dammit, GoldieBlox. I grew up in a family that completely supported STEM for girls (and boys). When the GoldieBlox Kickstarter happened, my whole family ate it up. My daughter has one of the original Kickstarter sets. You know, it’s a pretty good toy, too. Both my son and daughter like it.

The box is orange and yellow, with multi-colored dots and the blonde tool-belt sporting “Goldie” on top. The toy inside consists of pieces that are blue, purple, lavender, red, and yellow. With a long peachy-pink ribbon, and five character figures to manipulate. Each of the figures are internet-nerd friendly. A sloth, a hound dog, a grumpy looking cat, a tutu wearing dolphin and a koala in a business suit. A book that tells their story while giving you building instructions, and then alternate building instructions for ideas for free-play.

Pretty okay. Very tinker-toy with it’s spools and sticks and connector bits, but also kitschy in a way that has a lot of wink to the parent, and a lot of play for the kids who don’t get that it’s kitschy. Not quite enough toy, but a good starter set. For those of us who are raising boys and girls, and are kind of horrified by the gendered changes in marketing of toys in the last couple decades, we were willing to buy in and get the company off the ground.

Company founder and inventor Debbie Sterling is from the Bay Area, too, so that was an extra selling point for my family.

Then came this.


A great little Rube Goldberg machine built out of princess girl toys backed by three little girls running around to the song “Girls,” but with new lyrics that say girls really want a change.

And this.  GoldieBlox are one of four finalists for ad space for a small business to get aired during the Superbowl.

This was sort of a slam dunk for me. Even with these good arguments in the mix.

I liked the subversive message of taking a song that had lyrics that are pretty backwards, and all the pink princess toys, and turning it all into an anthem that says NOPE. Admittedly, I was also pretty happy that the Beasties had signed onto this. Because of course they would have had to. Right?

Oh. Wait. Nope.  The remaining Beasties make it clear that they accuse GoldieBlox of using their song in an ad. Something that MCA specifically requested in his will to never be done. They didn’t sue, they simply accused. It seemed to be upsetting to them, too, because they specifically like the mission statement of GoldieBlox. The guys grew up a lot, you know.

What was even more brass balls for GoldieBlox than using a song they didn’t even get permission to use, was that they had preemptively sued the Beasties for the right to do it under the label of free speech parody. Something that at least one expert in fair use legalities said was likely a legally tight case. At least tight enough to hold legal water, that is.

My ass stopped shaking to the new “Girls” for a second. Now I’m not sure what the hell I feel. I think I support GoldieBlox. Right? Feminism? STEM for girls? The right to free speech? Wait. Where do I stand?

It’s a bit harder to dance to that music.

The next shot out of this mess is a needle scratching across the record for me, though. The Beastie Boys didn’t even sue GoldieBlox. Whhhhhut?

Dammit, Debbie. Dammit.


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You Aren’t Doing It Wrong

I’m tired of all of these mommy blogger posts about how I’m doing it wrong. Or how you’re doing it wrong. Or, really, when it comes down to it, how the blogger seems smugly sure they are doing it right.

It’s all pretty ridiculous. You’re just not. I’m not. Hell, they aren’t either, likely.

Here’s a pretty horrible idea, if you have enough time and energy to fight online about the best ways to raise kids, it’s likely your kids are going to do just fine. There’s a lot of privilege that comes along with that kind of time, and the statistics show that it’s privilege that makes “the difference” as far as a child’s future financial success.

There’s no one-size-fits-all that works. No two families that are the same. No two moms. No two dads. No two kids. No two job situations. No two financial situations. When you add up the strange arithmetic that is the equation of your parenting situation, it’s likely going to come up with a unique answer that works for you.
If you try to apply that answer to another parenting situation, it’s going to be a false sum. The numbers are different. The children are different. The parents are different. The needs are different. The cultures are different.

These things really do matter.

People get heated about their answers, though. People like Stephanie Metz over at The Metz Family seems to get heated about her answers.  She wrote a blog post that’s getting some attention about… well really about a whole lot of different stuff. She started with the statement that her children are not the center of her world.

Tell that to the mother of newborn twins when she is clusterfeeding around the clock, as has happened to many other twin moms I know. Tell that to the mother of a child with profound special needs who has to set her schedule by her child’s medical needs. Tell that to the parent of an Olympic athlete who works hard to get her child to practice meets and competitions, sacrificing much of their own for their child’s extraordinary talents. Tell that to the parent who doesn’t have enough money or assistance to feed the whole family enough that sacrifices their own meals to make sure their children somehow aren’t left crying twenty minutes after every meal because it was so meager. Or how about the abusive parent that decides to seek help before hitting their child? Should that parent not have their child be the “center of their world?”
Tell that to somehow who lives a different life than you.
I’m sure that’s not what Ms. Metz meant. I’m sure she was talking to the “general” parent, but there are times in every parent’s life when their child is the center of their world, generally speaking, and that’s okay.

One of the horrible problems with blogging with such an authoritative voice is that the blanket statements end up covering far more than you ever intended to cover. So I’ll give Ms. Metz the benefit of the doubt, just like I give the benefit of the doubt to all the other parents out there just doing the best they know how.

Speaking of the benefit of the doubt, I doubt Ms. Metz knew how horrific bullying has truly become when she seemed to state that the only real bullying was physical assault in her screed.

30 years ago I was horrifically bullied in school. So much bullying I can’t even begin to stomach recounting it all. Only the smallest portion of it was physical. Maybe one or two physical assaults a year at most. The rest was whispered (or shouted) horrors. It was all so much that one day one of my bullies sat next to me and tried to talk to me as the person he had never treated me like. He asked me how I could handle all of the constant verbal abuse. He asked me, sincerely, why I didn’t kill myself, as he could see no other option if he were me. He was not being a bully at that moment, I can assure you. It was a strangely human moment wherein we were separated from our normal school environment and peers. We were forced to relate as peers in this environment and the situation forced him to assess his behavior and my own perseverance. He wasn’t telling me to kill myself, he was asking how I managed to not.
It was a fairly valid question.

That was 30 years ago. Before social media made it possible for the bullies to always follow you. Even if you switch schools. To make fresh starts impossible. To make escape impossible.

I doubt Ms. Metz truly understands that it’s not just Facebook, it’s also Instagram, and Twitter, and Snapchat, and a thousand other avenues into a child’s head, where hours and hours every day can be spent telling a girl she is ugly. She is a bitch. She is a whore. She is stupid. She is, in short, unacceptable, and always will be. I doubt Ms. Metz knows that the global village that children are a part of now means that all the people those bullies know, all the virtual friends, have also been told that the bullies’ targets are unacceptable. They have laughed and escalated it to a culture that is so lockstep that Anorexia is hitting as young as 6 now, with girls (and boys) dying to somehow achieve acceptable to their peers. To achieve acceptable to the face they see in the mirror.

Should that child not be the center of their parents’ world? That child who peers into a mirror and sees unacceptable because that is what is pinged at them from when they wake up to when they go to bed, should they too not be the center of their parents’ world because that will somehow ruin them for future success?

That’s not the end of Ms. Metz screed about how everyone else is doing it wrong, either. She talks about guns for a while, and about how her boys like to play good guy vs. bad guy. Okay? Does she want there to be more gun acceptance at schools? Is she living in the same country as me? As the Pozner’s?

The Pozner’s aren’t really into there being more gun acceptance at school. Despite the NRA making a concerted effort to get the parents of the Sandy Hook children to speak up about wanting more armed guards or armed teachers or armed anybody, they pretty much all stood up and spoke for less arms all in all.

I’m sorry if that makes your children pause before choosing a toy to bring to show and tell. I really am. I wish things like that had never happened. I wish we didn’t live in a place where we would have to worry about guns – toy guns or real guns – in schools, but we do. Perhaps your own wish to shelter your child from a world where he has to choose a less loved toy is really more at issue for you than the collective pain of people hoping to shelter their own children from a world where guns on a school’s campus may very well mean dead children.  I assure you, for the rest of us, it’s that these calamities happened.

She then goes on to randomly rail against proposed grown-ups who have been so horribly raised by their parents that they are now gibbering in hallways after every random proposed encounter. As the internet likes to say, cool story, bro. It’s an interesting take on the psychological affects of attached parenting that is grounded on… not a whole lot other than smugness from what I can tell. I say smugness because she then goes on to tell the proposed story of her own two children and their proposed encounters in the world. She peers into her crystal ball and sees true, y’all. You can tell, because, hell, she speaks with authority. She said it! It must be true!

And hell, it probably is. Her sons will likely grow just fine. They’ll suffer the slings and arrows that people have been suffering for aeons, with new twists provided by new technology. They’ll have success and they’ll have failure. Maybe not in equal measure, because that’s just the way the old ball turns.

They’re likely to mostly be successful, though, by whatever terms she deems acceptable. She has the privilege to think hard about her parenting choices, and that means she’s getting to actually make parenting choices when a lot of people simply have their back to the wall as far as choices.

That’s really what I take exception to in her screed against other parents Doing It Wrong. The smugness she inadvertently comes across with (hey, benefit of the doubt, again) in her summation of all the ways she’s Doing It Right rubs me wrong. I’m sure that’s not how she meant it. She was just writing some thoughts out. I’m sure she has a lovely family, and beautiful boys who are a delight to be around. I’m sure she is a wonderful person with a lot of compassion.
I know I screw this blogging thing up all the time, too. I don’t always speak with the most compassion, or insight, or all the facts in place. Much as I try, I fail. I’d want someone to speak up when I fail. So, hey, I’m speaking up.


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Parents Aren’t Causing Autism. Quit It.

You want a rant? I’ve got one.

This was shared on my feed and I pretty much had my brain spasm all over the place. Here’s what I said, try to ignore the twitching anger:

I can’t with this. I mean, I can’t even read it. I mean, I can’t read it and continue to not be seriously heated. 

You want to celebrate diversity? Here’s one for you: people on the Autism Spectrum? They’re people. 
Here’s another shocker: not all of them are “difficult to reach.” 
Autism is a spectrum “disorder.” It’s a collection of learning disabilities, and neurological conditions. Not all of them present, or at the same levels with all people on that Spectrum. 

We haven’t really delved very far into where ASD comes from as much as we have a new scare every month about what’s causing it, and how we’re being bad mothers if our children are affected by it. As though, somehow, we are the sole gatekeepers to our children. As though they are our possessions, and everything that happens with them, or everything they are is a reflection on us. 
This is a tool that has been used to beat women for centuries. It is a tool that women use to beat other women. It is a tool that women use to beat themselves. 

Early in the history of ASD as a disorder it was believed to be caused by mothers who were too cold to their children. Not surprisingly this was during much of the early 2nd wave Feminism when women were beginning to discover identities outside of only being mothers. 
You want to have a career, or a life outside of the home? You’ll cause your child to be irreparably damaged. Now take off those shoes, get back in the kitchen, and do your duty to your family, or else your children will suffer, and it will be your fault. 

Much has evolved since then, and we have come to learn more, but so much of that knowledge is a chaos of continued blame sourcing that seems to end nowhere other than hocus pocus faux scientific “medical” quackery. 

What do we know? There seems to be a genetic link for Autism. It runs in families. 
We know that the numbers of those with ASD have likely been underreported for decades. So many people lay in the wings of Autism Spectrum and were so “lightly” affected that they simply were never reported. They were considered late talkers. Exceptionally picky eaters. Late bloomers. Shy. “Weird.” Etc. Parents simply never understood what they were seeing and never reported it if they did suspect. Perhaps fear of the stigma of a diagnosis that would follow their child around for life gave them caution. More likely that they just truly did not know what they were seeing. “Uncle so-and-so was a late talker, and then he went on to be successful,” went family legend and the friendly advice of neighbors. And so they put their suspicions on hold. 
Lord knows the backlash that I incurred when I put my son in Early Intervention at age 2 was bad enough. I can not imagine how bad it would have been if I had not had the wherewithal of my own knowledge and the courage to listen to my own inner voice AND the luxury of time that comes with being decidedly upper middle class to back me up. If I had been fighting the daily grind of a 9-5 (or a 3-11 for that matter), and trying to put food on the table, keep the gas turned on and water running, and the kids in clothes? Would I have fought so hard? 
It’s pretty hard to say. 

I’m pretty insulted by this whole essay and it’s tone. I’m being frenetic and chaotic in my refutation of it. 

What I have to say? 

ASD isn’t the end of your child if your child has it. Not all ASD looks alike (my son could not be more sweet, more open, more funny, more loving, or more empathetic toward others). Mothers aren’t “causing” Autism. 

Continuing to feed any of the three beasts I have named right there? Not. Very. Awesome.


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It Started Simply

It started with a runny nose. The beginning of the school year usually means the start of the immune year, too. Especially in these first few years of school. So I wasn’t surprised to see a runny nose on either of my 4 year olds. It started, this time, pretty simply with a runny nose.

 

After a few days of not eating very much, the cough came out. Every night when we put P to bed, he’d cough fitfully for a bit, then sleep for most of the night.

After a day or two, his sister followed suit. Pie had her own runny nose, and her own cough when laying down for sleep. It wasn’t as bad as P’s, though, and she was still eating and seemed more energetic. I felt a bit rundown myself. We moved the kids to sleep in our bed. The air circulation in our room is the best upstairs, and they sleep most deeply when sleeping next to us.

In this same time frame my husband’s division at work got dissolved, and he was let go. We had a week or so of insurance left, and then we’d be without insurance until he found another job.

I took P to his pediatrician. We talked through what was going on with him while she did the examination. We talked through the insurance problem, and she did what she could. She noted he had fluid in his eat, but the hope was the medicines prescribed should decrease the sinus pressure and let his ears drain before that became a problem.

We got the medications and followed them faithfully. He seemed to be improving for a day or two and then it was like a backward slide.

The week ran out and we had no insurance. Meanwhile Pie got worse. I took them back to the doctor. No, no insurance. Yes, we’ll pay. A 10% discount applied for self-pay brought that total to $174 for both children to see the doctor. The doctor thought Pie sounded great, and advised us to change to new hypo-allergenic pillows, remove stuffed animals, that the coughs coinciding so directly with sleep time meant that they were being irritated by their bedding. P sounded worse, and the fluid behind his ear had developed into an infection. His medications were increased, and an antibiotic was prescribed. The doctor and I talked about the no insurance, and we worked out the best medications possible that were the least expensive.

The antibiotic was free at my grocery store. The other medicine was not, it was over two hundred dollars. I silently was grateful for the fact that we have savings, and could afford this luxury when I know so many people who can’t.

It is a luxury in the United States: Wellness. Being able to afford medication.

What happens to people who can’t afford it? If they’re lucky, they have credit cards. So they pay for their sicknesses on a card that adds to the stack of bills that they can not pay. If they aren’t lucky, they simply get more sick.

Some turn to emergency rooms in hospitals, where supposedly you can not be turned away for the lack of insurance. The reality is that people are being turned away, though. Lacking any medical care whatsoever, they go to the emergency room for reasons that are not immediate medical emergencies. The laws that state that patients can’t be turned away only protect those whom the hospitals deem to be having an emergency. Lack of money or insurance when you have medical needs does not constitute an emergency.

Even if the hospital does take you in, even if you do have insurance, the mounting debt for simply being treated can and does wipe out families entire financial assets. Bankruptcy from medical debt is not unusual.

Simply having a baby in the United States costs about USD$30,000. Add in a complication like cesarean section and that costs goes to USD$50,000.

That costs gets parsed into pieces if you are lucky enough to have health insurance. The insurance companies bargain in large purchasing blocks. The insurance companies will pay this much, and the patient will pay that much, so the hospital sets their rates thusly. They take into account late payments from insurance companies (entire counties have been known to deny service to different providers because of non payment for services by the insurance companies), what percentages people are generally responsible for “out of pocket” by the insurance companies, and how many people simply will never be able to pay, and the few that do pay out of pocket. The hospitals and health care centers pay litigation insurance for those who will sue for damages for negligence or other malpractice. The pharmaceutical companies release more medicines as brand names that carry hefty price tags. They reformulate old medications with slight variations that can be as simple as a different way of administering the drug. That way they can avoid having their patent go into generic formulations that are sold at pennies on the dollar of the brand name.

Legally forbidden from directly paying doctors for prescribing the pharmaceutical’s goods, pharmaceutical representatives invite doctor, hospital and clinical representatives to expensive meals or events. Boxes of samples of the drugs are given to doctors, health centers and hospitals and then have a free sample to give to their patients whom they are often desperate to help, but that know can’t afford the medicines. So the doctors get used to prescribing that particular drug. Mostly nobody is bribed directly, and the free samples from the pharmaceuticals can be a boon to clinics serving poorer clientele. It’s almost a windfall for them. They know their patients will actually be treated and get better. Or at least survive.

That last part is the sticky bit for me. I can’t even count the number of people I know that are on medications basically permanently. Blood pressure medications, immune boosters, immune suppressors, anti inflammatories, pain reducers, anti depression drugs, anti anxiety drugs, anti convulsant drugs, blood thinners, blood coagulators. The list goes on and on. These medicines can cost anywhere from $30 a month to $800 (and more) a month, and that’s after insurance pays their part. If the person has no insurance, then the cost of the medicines that they need to live are so prohibitive that most people just… don’t take medicine. They use alternative medicines like herbs, and homeopathic “medicine.” They change their diets to whatever the current food fads say are the most healthy, and least likely to make you sick. They pray.

They also try to avoid any sort of pre existing condition diagnosis on their forms. A diagnosis of epilepsy, or asthma (or at least used to be able to, the Affordable Care Act actually took care of this, and is one of the reasons it must not be repealed) means being denied health insurance coverage.  Even a simple diagnosis of acne has been used to retroactively deny health insurance claims, and then to deny health insurance, period.

People often stay in low paying jobs that have no potential for growth simply because the employer offers health insurance.

The other thing that’s happening?

People are immigrating to other countries that actually have universal health care. We’re losing some of our best and brightest to dead end jobs, bankruptcy that hurts the entire economy, and exodus from the country.

 

I don’t raise this issue because of the recent experience of paying over $400 for a simple cold that had complications for my two kids. I raise it because I’ve had friends move overseas, I’ve got friends that are drowning in medical debt, and I even have friends who are simply dying, just because medical treatment has come too late for them. I raise the issue with my own experience of paying $400 for a simple cold that had complications because, although any of that can happen to you, if you have children it’s likely that the simple cold with simple complications will happen. It’s a thing you can connect to, and people are more likely to care about something close to them than far away.

Meanwhile House GOP voted to repeal the ACA, otherwise known as “Obamacare,” for the 40th time.