the world through rainbow eyes

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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.


I’m A Jerk On Facebook

Fucking Facebook. I’m going to blame you, Facebook. It’s probably not fair, but I’m going to blame you.

I’m going to blame you for taking reasoned discussion and turning it into heated anger. I’ve seen it happen again and again. Post something, and it’s fine if there’s a bunch of agreement, mostly, but the tenuous level of friendship between the people who are friends with the poster means that they don’t know each other’s quirks and writing styles. They don’t give the benefit of the doubt. So people get into it. It turns ugly.

What was it this time? Vaccinations. A friend posted a thing about vaccinations and one of her friends, whom I don’t know at all, disagreed with her about vaccinations. Because I am an asshole, I chose to step in and try to clear up what compromised immune system actually means. Which did absolutely nothing. Of course. Because it’s Facebook.

See, I think people hear “compromised immune system” and they think, “oh, the poor sick kids. That’s not my healthy kid! I’m sorry for the poor sick kids, but that’s not my problem.”

When, really, compromised immune systems are everyone’s problem. I mean, it’s not just herd immunity, but yeah, that’s part of it, too. See, the problem with measles (German measles, otherwise known as Rubella, that is) is that it’s super dangerous to pregnant women. Not in a horrible, it kills pregnant women kinda way. More like, over fifty percent of women who contract measles while pregnant end up with serious complications. That’s a good deal higher than that less than 1% of complications that happens with vaccines (a number so small as to be nearly statistically insignificant, by the way, and certainly the dangers of the diseases that you are immunizing your children against with these vaccines carry a much higher rate of complications). These complications range from miscarriages and stillbirth to blindness, deafness, and so on.
Measles are so serious that quarantine used to be the only actual answer, and it wasn’t a very effective one. It still spread.

So, again, to the compromised immune system. I don’t think that a lot of people realize how wide a term that is. Arthritis is an autoimmune disorder. Eczema is an autoimmune disorder (to some degree).
Sure, it’s the kid with multiple sclerosis, but it’s also the kid with asthma.

And by the way, why are you so willing to throw the kid with multiple sclerosis under the bus?

What the hell, man? What the hell? Are you so lacking in empathy that you simply think “too bad, so sad, I can’t risk my kid getting Autism?” (which, hey, let’s be really, really clear now: YOU CAN’T GET AUTISM FROM VACCINATIONS. EVER. EVER. EVER.) Which, also, by the way, being pretty close to a lot of people on the Autism Spectrum, I’ve got some fingers up in the air for that fear, too. Trust me on this: your kid having Autism? It’s not something so freaking scary and world shattering that them being dead is preferable.

Are you scared of the list of ingredients on vaccines? Then go take a course in chemistry, because these words being big and polysyllabic does not actually equate to dangerous. It just doesn’t. Lacking a college nearby, or the time to take such a course, use Wikipedia. There’s fabulous pages on all these ingredients. There’s great pages on the chemical interactions, even.

Are you scared of the list of vaccines and how long it is compared to how long it was when we were children?

Great news! The active agents in vaccinations (the payload that makes the vaccines actually vaccines) is smaller than when we were kids. I don’t mean piece by piece either, where you put one MMR vaccine against the MMR from my childhood. I mean, than the whole damn list. That’s pretty much because of those big polysyllabic words. It’s kind of awesome, honestly.

There’s been some awesome doctors and epidemiologists that have gotten together to form the schedule, too. It’s optimized to hit kids when they most need them.

I’m so scattered on this issue that I don’t even know what all to tell you. I’ve mentioned the chemistry, I’ve mentioned the immune disorders. I’ve mentioned the active agents. Have I mentioned herd immunity?

Do you understand what herd immunity is? This one is pretty near and dear to me. See, even though my brother and sister both got chicken pox as children, they both got it twice. That’s not really supposed to be possible according to a lot of people. You get chicken pox once, and then you’re safe from ever getting it again, right? Nope. Doctors know that happens. See, herd immunity works in a couple ways.

The first way it works is awesome. You have a certain threshold of the population who have an immunity to a disease (either through vaccination or through other exposure), and suddenly the likelihood of the disease passing from one person to another and forming an epidemic becomes extremely difficult. The thresholds vary from disease to disease, some are as low as 80%, some as high 94%.  The high ones also, not surprisingly, have a high infectious rate, too. In susceptible populations, one index case creates as “few” as 12 more cases, and as high as 18. From one case. Then each of those, at least, 12 cases creates, at least, 12 more. Do you see the problem yet?

Okay, so that’s perfectly susceptible populations, but a whole Montessori school where everyone isn’t vaxxing? Or a whole church? Or all of your home schooling co-op? Guess what they are? Do any of the parents of the children who go to your school travel out of the US often? Do any of the people they regularly come into contact with? Like, oh, say the grocer at the store? Anybody at the church? The home schooling co-op? Do you live on a mountain and ward people off with pitchforks when they come near? I’m betting you don’t, no matter how homebody you might think you are.  So, you and your kid are part of this herd.

Which brings me to the second awesome way herd immunity works (the first by making it hard for epidemics to really get feet on them). It protects people from secondary infection. See, like I said, some people can look perfectly healthy, but for some reason, they aren’t immune to whatever the particular disease is. Sure, they kept up to date (and adults need to keep up to date on the DTaP, too, by the way, just in case you were confused. Make an appointment with your doc. Pertussis is nasty and has been hitting hard for the last few years). They had their vaccinations, or had the disease as a child, or whatever, and they still are susceptible to getting it a second time. 
Herd immunity protects these people, because the likelihood of coming into contact of the disease lowers so significantly as to become negligible.

Then there’s the best one, and the one that really brings the assholes to the table. The way herd immunity protects people who can’t be immunized. Now, I’m going to say can’t. I’m not going to say people who chose to not have their children immunized, because those are some of the assholes I was speaking of. And yeah, I feel pretty justified calling them assholes here, as they are actually endangering the lives of everybody else because of their unwillingness to vaccinate. I want to talk about the people who can’t. Some children have egg allergies (and egg albumen is an ingredient in many vaccines). Some children have very, very serious auto immune disorders, and their immune systems are so fubared that giving them the task of building immunities with a vaccine, and instead it will pretty much self destruct the kid. These are not the faces of slack jawed nobodies that some truly inhumane people have decided aren’t worth worrying about.

These are vibrant, beautiful, sweet, energetic, amazing kids. Some with big futures ahead of them, some with only the present (and why would you want to take away more of that present? What the hell?). For whatever reasons, they can’t have vaccines because it is a real physical danger to them. Not in a Jenny McCarthy told me it gave her kid Autism kind of way, either. But in a, go into a seizure, go into a coma, get put on a respirator, gonna die kind of way.

So, herd immunity protects that small percentage of people that really and truly can’t be vaccinated. People with cancer. Newborn infants. The elderly. People with egg allergies. People with all sorts of disorders that make it possible for them to be there in front of you and either know or not know that this part of their body doesn’t work.

So, I’ve told you about that part. Okay. You still don’t care. These diseases are just amorphous risks to you. They don’t feel real. I’ll tell you why they don’t feel real. It’s because vaccines work. If you’re pretty young, say, in your 20s or 30s, go talk to grandparents or greatgrandparents. Otherwise, if you’re in your 40s, like me, talk to your parents. Ask them about childhood diseases.

See, it used to be common to be in and out of the hospital constantly as a child. It used to be common for kids to go blind, deaf, be crippled. It used to be common to die of these things. It used to be that a cough was scary to everyone who heard it, and a spot meant run away. Not everyone your parents, grandparents, or greatgrandparents knew, not by far, but at least one or two people they knew as children, sometimes many more, died because of these diseases.

Now, these diseases are so uncommon that we’ve weighed the risks as we know them and we can’t really properly weigh the diseases themselves, because we simply aren’t familiar with them. We don’t know what it means to have polio, or rubella, or measles, or pertussis. We don’t know what an epidemic looks like. We don’t know, but we will. 

And I say we will because this is the most dangerous part of the herd immunity thing. We figure it’s safe for just a few of us. Everyone else is getting vaccinated. So, we can not. That’s not quite true any longer, though. Every year it all gets a little bit worse. So these little outbreaks keep happening. We’re getting under that threshold, and it’s pretty high threshold for some of them, a high threshold that requires a very large herd immunity. 92-94% for whooping cough (the “P” in the DTaP that you need to renew every few years, have you called your doctor yet?). Not really all that surprising that we heard so much about Pertussis last year when you think about that, is it?

I know this isn’t really a good post. It’s rambling. It’s all over the place. The thing is, I can’t really keep making these arguments. I certainly can’t keep making them on Facebook. It’s making me an asshole. I’m wanting to say horrible things that I shouldn’t say (some of them I guess I said here, sorry). That doesn’t really make me a happy camper. I need to let this all go and push it out there and take off the mantle of the idea that I can do shit all about the fact that some people have just… just decided differently than me. Than science. Than REASON.

Oooph. Breathe in. Breathe out. Gotta let it go.

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The Language of Life

When P and Pie were 12 months old we started to notice that P was different.

He was the first to talk of the two of them, hit all his milestones on time, was emotionally engaged, and followed a pointing finger fine. So when his language started to stall out we were only a little concerned. We understood that twins can sometimes have verbal delays, so we weren’t exceptionally worried, but it did seem like more than a little delay.

The trouble was that at around 15 months or so he started to have this sort of accelerated separation anxiety. Or just generalized anxiety. He would go hysterical at the drop of a hat, and stay that way all the way to puking, and then continue in that manner until he had completely worn himself out. Then he would be sort of emotionally catatonic for a while.

If I turned the corner away from him, this would happen. If we went anywhere at all inside a place, this would happen.

He got funny about his clothes, and was very specific in the textures that he could stand, and the ones he couldn’t.

He got funny about his food, and was very specific in the textures, colors, food that he would eat, and everything else was cringe inducing for him.

There was a scheduled doctor visit at 12 months old, and we brought it up with our pediatrician and she asked us to count his words and see what happened in the next 3 months.

We counted less than 10. We were reaching, too. Words that he had made simply once were on that list.

At the scheduled 15 month visit, we all agreed that we needed Early Intervention.

We contacted Early Intervention in our state and an evaluation was scheduled. We got a massive packet in the mail where I had to fill out all these boxes about when he had done this or that developmental milestone.

We weren’t thinking Autism yet.

When the day of the evaluation came we took P to the center. He played in the waiting room fairly happily, but once we entered the actual room with the panel of specialists who were going to assess him and the door closed, he went into panic mode.

The planned assessment did not take place that day when he was around 18 months old (these things sometimes move at glacial rates). There was no question that he needed help from what they saw, and help came in fits and bits from the age of 2 until now, at the age of 4. It will continue until some unknown time. Perhaps all of his life, though no one that works with him for long believes that.

By the time he was 2 and a half we knew that his verbal delays were significant. He had already had his hearing tested, and it came back fine. So we knew that the source of his expressive (talking) and receptive (hearing and understanding) verbal delays was not because he could not hear the sounds, but because the processing that untangled hearing for him simply was not processing a single thread of coherent information, but instead gave him a tangled mess that he struggled to decipher.

He has had many specialists and therapists  since then. When he aged out of the Early Intervention state run system, he entered our county’s school system.

Every new bit of vocabulary that untwists in his neural pathways seems to unwind a bit more of his anxiety. He struggles with new situations, but has accumulated enough “vocabulary” of the life happenings that he can untangle them more easily, too.

Life is a language, you see. You wake in the morning to a bed you know, in clothes you are familiar with. The walls are known to you. The people who live in your home are a constant. Breakfast happens. You can predict each thing that is likely to happen next and what is expected of you. The sounds are ones you know the pattern of.

For P, that language is work. We try to make the language simplified. We introduce new “words” one at a time so he can learn them and integrate them into his sphere of understanding. His brain works overtime and then some to do so. It is an amazing machine that swallows such difficulties whole, teaching himself the language of life.

One night while reading to him before he turned to me and told me that I don’t speak Language. “Mommy,” he said, “you don’t understand. You don’t speak language like P.”
“Oh? What do I speak?”
“You talk Mommy Language.”
“What do you speak? What does P speak?”
“Aha. I see.”

Since then I have endeavored to learn more of his Language. The sounds of an entire room heard all at once. A mouth of texture and taste while eating. Sights, sounds, touches, tastes, and smells are most pleasant for him when they come in big singular lumps of just one of those sensations with many threads, but best understood when they come individually.

The signs of Autism Spectrum Disorder that were once quite sparse are now more populated. I have been reluctant to have him labelled and pathologized, but know that it is probably time for that. His pediatrician agrees.

If he is to continue to learn our Language, and us to learn his, we will need more focused interventions and therapies.

And I do want to learn his Language, as much as I want him to learn ours. He has taught me so much already, and there is so much more left for him to teach me.