all the wrong questions

The process of coming to terms with raising 3 autistic kids, 2 of them severely autistic, is.. well I have a ton of analogies here but none seem quite apropos.. but "death by 1000 paper cuts" is probably the closest. It's a play on the original term, which was coined around 900AD China - death by 1000 cuts, or lingchi - slow slicing.. a form of torture where someone else kills you with the most amount of physical agony possible. In my analogy, death by 1000 paper cuts, you won't die from the cuts themselves, and nobody is actually trying to kill you, but the reality of your situation takes such a severe toll on you mentally that - at times - you beg for death.. usually just internally.. but sometimes out loud too.

Over the past decade, while I'm cleaning feces off the some random surface for the 98739179287193rd time, taking the toilet off the flange to retrieve an awkwardly shaped plastic bobble for the 8798172187th time, repairing a new hole kicked into the wall a 521771728th time, or retrieving a fully naked 10 year old non-verbal "child" from down the street for the 938191st time (to the horror of onlookers).. I sometimes ask myself one or more of the following questions;

• What am I doing this for?
• Is this the rest of my life now?
• Will they ever be worth all this effort?
• Is it negligence or exhaustion if I just stop caring?
• Do I even love my child anymore?
• What if I just let them walk into traffic?
• Why don't you just die already? (sometimes them, sometimes me)
• Should it be suicide or murder / suicide?
• If it's murder / suicide, who comes with me? Just child B, or C, or B & C?
• Am I the most worst and terrible human being for thinking such things?
• Is that poop on the kitchen floor again 5 mins after I just cleaned up shit?

Like it or not, pretty much every parent of severely autistic kids regularly asks themselves these questions. Many would never say it, ever. The societal backlash would be so severe it would mean social death, possibly even a criminal investigation just for saying anything like that to another human being. Many people also can't bring themselves to admit to anyone else, maybe even their own partners, that they are having these thoughts. That's the worst of it though.. physically being a complete family unit - father, mother, and kids - while emotionally, mommy and daddy end up utterly alone.. trapped with thoughts they rarely share in their entirety, outside exasperated emotional outbursts of verbal diarrhea here and there, or nearly inaudible under-the-breath utterances that would make John Wayne Gacy ponder what's wrong with you.

Over the years, I found myself being less and less able to contain these thoughts in my own head.. I began saying them out-loud. Under my breath at first, just whispers.. the words refused to remain trapped. Like swearing, somehow it felt just a little better to say it out-loud.. a little easier to keep going, having let those words out. This was a mistake though. As I chased that dragon, the whispers became spoken, then they became declarations. My partner heard them. My first child, who is verbal and perfectly capable, undoubtedly heard them.. and I only felt marginally better for having said those things out-loud while inflicting that reality upon them - daddy thinks these horrible things and says them out loud.

letting it out

There are ways to let this shit out that do not damage those around you for having heard it. I don't need to explain it here, there are plenty of tools to help people deal with this. Use a privacy oriented search engine and explore it.

just trying to help

When you confide some of the daily occurrences and difficulties, people without kids are utterly blown away, while people with neruo-typical kids might try to "compete" in a way.. bringing up their own difficulties raising their kids. Your parents or in-laws might climb up on a soapbox to launch into an oratory about how difficult you were to raise. Worse than that though are their questions.

• Why can't you keep your house clean?
• Why don't you keep the doors locked so they can't get out?
• Why don't you just discipline them?
• What are you going to do when they get older?
• Don't you wonder if they will be able to live on their own?
• What happens when they start having sex? What if there is a pregnancy?
• Have you heard of this supplement that's supposed to help kids with autism?

There are a million more things I could list here, but every single one of them elicits the same internal response: "FUCK YOU DON'T YOU THINK I'VE THOUGHT OF ALL THIS SHIT LIKE EVERY TIME I CLOSE MY EYES OR GET A SILENT MOMENT TO MYSELF? DON'T YOU THINK THIS SHIT DOMINATES MY EVERY WAKING MOMENT? FFFFFFUUUUUUUUUCCCCCCCKKKKKKKKK YYYYYYOOOOOOOOOOUUUUUUUUUU!!!!!!!!!!!!!!!!!!!!!!!!!!" .. then we look at them in square in the eye and say some stupid shit like "Oh we're trying" or "Yeah we're working on it" or whatever.. while imagining all the imaginary blood draining from the giant imaginary knife I just imaginarily stuck into their very real and well meaning neck.

a valid question

There is a specific question that comes up, from other people or maybe from your own internal musings, which is;

• What about putting them in a home or giving them up to the state?

To understand this question and what it means to the parents of an autistic kid who might be wrestling with it, you have to understand the nature of the parents who are even around to be wrestling with it in the first place. So many weak cowardly assholes abandon their neuro-typical families because they are absolute trash fire human beings unworthy of passing their genes on (but somehow have). I have only slightly more sympathy for people that abandon their families when severe autism is a factor.. but don't get it twisted.. you're still a trash fire cowardly asshole of a human being.

Did you notice, in my first list of questions that "should I leave?" was not one of them? The first time this question even crossed my mind was when my own mother mentioned to me "most guys would have left". I honestly never even thought about it before. Whether it's innate tenacity, some sense of a "social contract", a personal belief, or just plain stubbornness.. leaving is just not even in the cards for me. This must be the mindset of most parents who are still around to even struggle with the question of putting their child in a home or giving them up to the state.

However, this attitude combined with the constant onslaught of trials, tribulations, and outright horrors - it creates cognitive dissidence so severe it may result in somehow seeing suicide as a valid choice. Even though you would effectively be "leaving" by way of suicide, you don't have to experience the rest of your life with the consequences of making that decision. I've read some autism parenting stories where people receive a horrible terminal diagnosis for some disease, and they experience relief.. they've been given a way out that doesn't burden them with having to have made that choice. This is what extreme duress does when played out over years and years. It twists and deforms your internal reality in ways that make it very difficult for a person without these challenges to even comprehend.

The answer for so many parents with out-placing their child in a home or with the state is going to be a hard "no".. not because of some morality decision, though that does play a big role for a lot of parents.. but because in most cases it costs a fucking fortune to place a child into a quality home where they will actually be cared for, and turning them over to the state / foster care system is like willfully condemning them to being abused the rest of their life. In short, out-placement is not really an option for a lot of parents.

you are not bad

For some parents, especially single parents, if you have the means then a quality caregiver home might be the best option for everyone involved. After a couple decades of parenting a severely autistic child, the quality of care you can provide will have undoubtedly declined. Caregiver fatigue is a real thing, and it applies to anyone putting so much more than is typical caring for another individual long term. If you have the means or opportunity, and you are not a bad person for exploring this option. It does not mean you failed. It is simply providing a level of care for your child that you can no longer sustain. Nobody could. You are not bad.

positive ending

I wanted to close out this entry with something positive, but I don't have anything specific at the time of this writing. I just hope other parents of severely autistic kids read this and find some solace in the fact other people are going through it too, and you're not crazy or a terrible person for having these thoughts. The simple fact you're struggling with these thoughts means you're a good person. A terrible person would have no problem bolting, but you're in there.. fighting every day.. and I see you.