I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.

Life, laminated

The most exciting thing that’s happened this week is that I came up with a new way to organize our growing collection of picture cards for Monkey’s visual supports. Ta da!

picture cards organizer 2

I had previously tried organizing them with paper clips or rubber bands, and sorting them in envelopes. They have velcro on the back, so they don’t stack nicely, and both of these methods, at their most functional, created too much clutter. I considered something like a binder but then I came up with this lovely system, which is more readily accessible and better suited to what we are using them for. The stickers can be easily peeled off to change categories as needed, and there’s plenty of room for more cards. Yay!

We first started using picture cards with Monkey about a year ago, maybe a little more than a year. He was around 18 months. We started with photographs of different foods that he would eat and a choice board. At the time, he had basically no speech that we could understand, so we used the board and pictures like a rudimentary PECS system that allowed him to tell us what he wanted to eat or drink.

Fast forward to now. Monkey is HIGHLY verbal, and we are steadily increasing our use of visual supports. But why is that needed, if he can talk?

It’s not – I just really enjoy laminating stuff.

Just kidding. Although Monkey can offer up such complete sentences as “I wasn’t exactly expecting to see a dragon in my backyard today”*, he often can’t answer the question of whether he wants milk or juice. He has a delay in processing other people’s language. If you offer him a picture of milk and a picture of juice, then he is able to process what his options are, make a choice, and tell you (or point to the picture, but he usually also says the word).

He is much better able to process visual information than auditory information. (His hearing has been tested and is great, by the way. He loves the sound of birds outside.) The more words you use and the more complicated what you are saying (eg. a sequence of steps or events, two-part commands), the less likely he is to understand. And since he has anxiety around transitions, we started using picture schedules shortly after his second birthday, to let him know what’s coming and what’s expected, and to give structure to his day.

Right now, there’s a corner of our living room that is basically a shrine to visual supports. In addition to my lovely organizer pictured above, there’s a daytime schedule and a bedtime routine schedule, both with velcro so we can change them. Then there’s an activity schedule for structured play-time, an activity choice board for unstructured play time, a first-then board (“first wash hands, then snack”), and I am in the process of making a very simple token board. I’m also considering making some cards to put on a key-ring and carry in the diaper bag – for instance, one that says we’re “leaving soon”.

The activity schedules are fairly new and it’s amazing how his play has changed already. The bedtime schedule has been particularly helpful with his anxiety about bath-time. He was getting hysterical every time we put him in the bath, to the point that we couldn’t wash him at all. Apparently, this was because he never knew if we were going to wash his hair or not. If I told him “We are NOT going to wash your hair,” he didn’t understand, especially since he was already upset. But now he knows that if the picture of a bathtub on his schedule is replaced with a picture of a kid having his hair washed, it’s Hair Washing Night. That takes out the element of uncertainty, and now he climbs happily into the tub himself.

Every time I add a new system like this, there’s a part of me that thinks “Aren’t you taking this therapy mom geekdom a bit far? Your son is smart and verbal, do you really need a gazillion laminated pictures to communicate with him?”

But the more we use the pictures, the more it’s clear that, yes, we do. His ability, or inability, to understand and process spoken language at a certain speed has nothing to do with how smart he is. He is a picture kind of guy, and I’m learning to embrace that.

Besides. Anything that makes my life feel more organized and manageable right now is very, very, very welcome.

 

*This is from a TV show and is called delayed echolalia.

Note- I use LessonPix.com to make my cards. It’s a great website, user friendly, allows you to use your own photos, and the pictures they provide are nice – definitely recommend.

Optimism and misanthropy

For years, I’ve had arguments with myself about whether people are basically bad or basically good. Which side of me wins the argument has much to do with my current mood, but I’m never certain whether logic is on the side of the depressed me or the optimistic (possibly hypomanic) me.

I know what my therapist thinks. She thinks the optimistic me is right and the depressed me is delusional. I wish I could simply agree with her. The trouble is, the evidence often doesn’t support that.

On a personal, international, and historical level, the evidence is overwhelming that people are actually pretty horrible. Our particular talent seems to be taking something good and misusing it. Our legacy is one of slavery, war, increasingly creative ways to torture and kill each other, every conceivable kind of abuse, daily pettiness and selfishness, oppression based on whatever we can come up with (skin color, culture, language, gender, religion, illness or impairment, financial resources, circumstances of birth) and, finally, environmental destruction of the planet. And all of these things are totally unnecessary. You can argue that war is sometimes necessary, but until we are invaded by aliens, literally the only reason that war is or ever could be necessary is because people suck.

I come from a family in which there was inter-generational abuse. For much of my life I’ve been bullied, mocked, or simply excluded by peers and psychologically abused by people in positions of authority. (And my life has been pretty good!) And every time I let myself be optimistic that society is moving towards acceptance of those who are different, and think we’re making progress in understanding each other and listening to each other, I’ll read something on social media about how all those stupid liberals with their stupid identity politics need to just shut up and being bullied is good for kids because it keeps them from being weaklings (or whatever) and I just want to not be human anymore so that I don’t have to share a species with that person.

Despite all of this, there is a possibly insane, but improbably resilient, part of me that thinks the best of people, that believes they are basically well-meaning though damaged, that wants to like people and keeps seeking out engagement with them in hopes of proving the other part of me wrong. This is the part of me that forgives and asks for forgiveness because I’m not perfect either, that believes some kind of cosmic redemption is possible. This is the part of me that bothers with thoughts of a just society – whether that means a society that is incrementally better than what we have now, or an ideal anarchist society in which no one wields power or violence over anyone else.

The misanthropic part of me thinks anarchism is a bunch of bullshit. A power structure will always find a way to reemerge, as in communist countries. People will just kill each other like they always do.

The optimist in me says, “You’re not the only one that feels this way. There are others. People as imperfect as you, as angry as you, people stronger and smarter and more empathic than you, who are fighting injustice on all fronts because they haven’t given up hope that we can do better. Because they can’t afford to give up hope.”

I look at my son, and he’s just wonderful. I look at him and think, “How can people be bad?” But then I remember that as he grows up (if we haven’t all killed each other yet), he will be bullied and hurt and excluded by others, as I have been. Maybe much worse. And I try to find a category for all those people who hurt and bully others that’s narrower than the human race – a category that doesn’t include me.

But that category also has to leave out all the people I care about and empathize with and want to protect. So that they (we) can be the good ones. Victims, not perpetrators. The trouble is that I see the ways we’ve hurt others, too, knowingly or unknowingly, the ways we’ve participated in structures of abuse and domination. So then I start thinking, “But that’s not the same, this is worse than that, what I did isn’t like what that person did,” etc etc.

Or is it?

At various times, I’ve gone through mental gymnastics to explain to myself why I’m not like other people. Maybe I’m not really human at all, but some kind of elf! (This was Preteen Me.) Or witch! (This was Teenage Me.) Or visionary! (This was College Me.) It’s apparent to Adult Me that if I am any kind of elf, witch, or visionary, I am failing at my vocation miserably and in some very human ways.

Maybe, after all, we are all in this together. Maybe I, with my hurts and faults, am no more or less redeemable than anyone else.

Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.

Pass the acceptance, please

Apparently this Saturday is the beginning of Autism Awareness Month. (It’s also my local library’s spring book sale, but that’s probably not as exciting to you all as it is to me.) Or, better yet, Autism Acceptance Month. Because people are already aware of autism, aren’t they?

People are aware of autism as something so horrible that it’s better to let their child die of measles or be paralyzed by polio than risk the (scientifically dis-proven) vaccine-induced onset of autism. They’re aware of autism as something so horrible that it excuses a parent killing her own child. Does this kind of “awareness” help autistic people function in society, form meaningful relationships, find employment, live rewarding lives?

People are also apparently aware of autism as something that has a particular “look” – hence the often made comments “You (your child) doesn’t look autistic!” (I guess autistic people are supposed to be green??)

Forget about awareness. All it does, as far as I can tell, is make people think they know something when they actually don’t.

You know what I would like? I would like to be able to take my almost-three-year old son anywhere in public and not be glared at, told I shouldn’t be there, or hear muttered unkind comments. I would like to be able to take him to story/craft time at the library and not see him excluded by a particular parent volunteer because she doesn’t understand his behavior.

((Do you know how much it hurts, after a lifetime of being excluded by neurotypical people, to see your son (who is totally sweet and awesome) being excluded before he’s even three years old? It’s easy to say to someone who’s been rejected and excluded by other people, “Well, you’re such a cool person, that’s their loss.” It’s even true, but it’s incomplete. Because when you reject and exclude me, that’s my loss, too. When you reject and exclude my son, that’s his loss. That’s our pain and our anger and our loneliness, every freaking time.))

I shouldn’t have to put a big sign on my kid that says “I have special needs! Be nice!” in order for people to treat him with kindness and respect. Maybe I’m being overly idealistic here, but it would be cool if people could treat him that way just because he’s, you know, a PERSON.

What I want for him is acceptance. Acceptance, understanding, and support. I want people to see his awesome personality AND his differences, his challenges AND his gifts, not one or the other as if they’re incompatible. Because it’s all rolled up in the same human being.

Sorry, being a cruel and hateful person doesn’t make you mentally ill.

Trigger warning: saneism and hate crimes. Also I use the f-word.

There’s a sentiment that I see and hear a lot, often expressed by liberals who have an unjustifiably optimistic view of humanity, that offends me more than any number of slurs against people with mental disorders. This is the idea that “anyone who could do something like that to another person must be mentally ill.”

“Something like that” could be any number of things. Killing someone. Torturing someone. Being racist or fascist. Today’s example (which actually happened several years ago but just came back into the news because a judge in Florida decided it wasn’t actually a crime) is several prison guards locking a black man with schizophrenia in the shower and running near-boiling water on him for hours until he died. I’m not going to provide a link to any of the articles because it’s that disturbing; Google if you want the grisly details.

So I came across this story last night, and because apparently it wasn’t upsetting enough to read about another hate crime against a mentally ill person being dismissed as not worthy of prosecution, I read the comments. And of course there was that person (there’s always at least one) saying, “Who really has the mental illness in this situation?”

To which I respond, THE PERSON WITH FUCKING SCHIZOPHRENIA.

Let’s get something straight. Mental illness is an actual thing. There are specific symptoms that lead to specific diagnoses. There are detectable brain differences that can be studied. Genetics play a role – often a very significant role.

You don’t just get to decide that anyone who displays behavior you don’t like or don’t understand has a psychiatric condition, any more than you get to decide that anyone who takes a long time in a public bathroom has a colostomy bag. I mean they could, but unless you have actual concrete evidence of that, you probably shouldn’t assume it or assert it as a fact to other people.

This includes, by the way, Antisocial Personality Disorder. Many people are in the habit of casually diagnosing everyone with despicable behavior, or anyone who’s an asshole, as having APD (or “psychopathy” as they’re often not educated enough on the matter to know the current diagnostic term). Nope, sorry. Unless someone has actually been diagnosed with APD by a professional, you don’t get to decide that they have it just because you don’t like or understand their behavior.

The assumption that people are fundamentally good and thus all cruelty must be caused by a psychiatric condition is 1) delusional (though not in a technical diagnostic sense) and 2) saneist. It perpetuates stereotypes about mentally ill people being violent horrible human beings while letting all sane people off the hook for their behavior – even when they commit a hate crime against a person with a diagnosed mental illness. It makes “mental illness” itself a slur.

In reality, there are many cruel and hateful tendencies in human nature. These tendencies are not the same as mental illness. Many people with bipolar disorder, schizophrenia, and the like are very gentle and empathic people. I speak from experience, of which I have plenty because I know a lot of people with these conditions and I am one. While we may have violent outbursts when symptomatic, it’s the exception rather than the rule. It’s not who we are in our day to day lives.

Conversely, there are many people who do NOT have a psychiatric condition, who are bullies in their day to day lives, who are selfish, who like to hurt others or at least aren’t very bothered by it, and who are very susceptible to peer pressure. Did every person who participated in slavery or the Holocaust have an undiagnosed psychiatric condition? Or for that matter, every person in middle school who threw rocks at me or jeered?

I volunteered at downtown shelters. Homeless people with schizophrenia aren’t the ones jumping people, they’re the ones getting jumped. Or boiled to death in showers. It’s usually the person with the mental illness who is bullied and hurt by the normal folks.

But people with psychiatric conditions can also be assholes. We can also be mean, and selfish, and petty, and cruel. Usually this is NOT because of our mental illness. Usually it’s because WE’RE FUCKING HUMAN. Yes, all the nasty stuff you normals do, we crazies can do too. But it’s not because we’re different from you. It’s because we’re the same as you.

Accept it.

Why Johnny Doesn’t Flap: a problematic parody

I came across this book in the children’s section of the library last week. It’s called “Why Johnny Doesn’t Flap: NT is OK!” The authors, Clay and Gail Morton, have a son with autism and are self-described members of the neurodiversity movement.

My first reaction to this book was delight. It’s a pretty clever parody of books that attempt to get neurotypical/abled children to be accepting of those who are different (a worthwhile goal but usually condescending in its execution). It’s refreshing and funny. It takes the point of view of the autistic child, a welcome perspective shift that needs to happen a lot more. Here are a couple snippets so you get the idea:

“Johnny has problems with communication. He will say that a math test was ‘a piece of cake’ when he really means that it was easy.”

“Johnny watches the same television shows that I do, but he never recites the opening credits word for word. In fact, I’m not even sure he has them memorized. He sure picks funny things to focus on, but that’s OK.”

There is also an entertaining “Note for Parents” at the end, which informs the reader that “According to the Centers for Disease Control and Prevention, as many as 67 in 68 children may be neurotypical.”

Despite my giggling, something niggled at me. I wondered if it would be possible to write a parody that similarly shifted perspective, but took the point of view of an individual who (for example) uses an AAC device to communicate and needs assistance to use the bathroom. I got particularly stuck on this line, when the narrator laments his friend’s lack of interest in hydraulic forklifts:

“He might never be a real expert on anything, but he’s a good person, so that’s OK.”

I thought a lot about why this line bothered me and finally determined that it’s because it attempts to subvert the ableist paradigm while still accepting it. There’s an implication that the autistic character’s value is shown by his expertise in a technical subject. Intelligence justifies his divergent neurology. Where does that leave autistic individuals who are intellectually disabled?

There are definitely connections between various forms of neurodivergence and certain strains of intelligence and creativity. This is part of the beauty of neurodiversity – of the wonderfully intricate, fragile human brain in all its variation. At the same time, these connections do not appear in every individual. Not every person with schizophrenia is a math genius. Not every person with autism is a programmer. Not every person with bipolar disorder is an artist.

The individuals who have divergent neurology without associated gifts are part of the pattern in the human race that produces those gifts, produces science, poetry, etc. But that is not the substance of their worth as human beings. For that matter, it’s not the substance of worth even for people who do have those gifts. It took me a while to learn this, because for a long time I thought that my literary abilities justified my mental illness, that my value as a person depended on how smart or gifted I was to balance out my impairment. Once I realized that that wasn’t true – that I have as much value as the Nobel Prize winning novelist, and also as much value as the homeless man who recites his poems in coffee shops, and as much value as the nonverbal intellectually disabled woman who’s never written anything at all, because each of them has the same damn value – I was able to enjoy writing for the first time in years.

But back to the book. I was curious what exactly the authors’ take on neurodiversity was, so I googled and found this interview , in which they are quoted as saying: “Why do people with high-functioning autism have a disorder while non-autistic people are ‘normal?'”

Note the deliberate exclusion of “low-functioning” autistic individuals from arguable “normalcy”.

In my opinion, this is the major issue that the neurodiversity movement needs to tackle right now. There are advocates who say “The neurodiversity paradigm is for everyone, no matter how affected and impaired; it’s for those on disability benefits, it’s for those with aides, it’s for those who communicate by nonverbal means”; and there are others like Clay and Gail Morton who say, “Neurodiversity means that mildly affected individuals should be fully accepted because they don’t really have a disorder.” Those are very, very, VERY different stances.

I have major problems with the second approach. It’s actually deeply ableist (I explained why in this post). It’s exclusionary. It’s also, I think, a teensy bit delusional. (If you really can’t figure out what you have in common with those “low functioning” autistic people, then maybe stop describing yourself as autistic?)

A neurodiversity movement that excludes those who are most impaired by their neurology is just another form of elitist garbage, and I don’t have time for that.

The neurodiversity movement that I embrace, that I want to be reshaped by, that I want to tell others about, is expressed by autistic activists like Amy Sequenzia (who is nonspeaking) and Lydia Brown. Instead of seeking inclusion as neurodivergent people within the dominant, able-bodied, neurotypical paradigm, they simply reject it. They refuse to be defined by it. Anything less than that, no matter how clever or well intentioned it may be, falls short.