In the Disabilities community, there’s a certain level of irritation with parents of Autistics and of parents of students with ADHD.
They blog everywhere, and they sound really ignorant a lot of the time, talking about their child’s struggles with such an intimacy, and dispensing a whole lot of unhelpful advice. This crew often hates vaccines and gluten and thinks eradicating both would cure Autism. They sometimes also insist they cured their kids’ ADHD or Autism by removing it or stopping vaccines or other nonsense.
All of this is nonsense, by the way.
So typically, we never, ever talk about “cure” about things like Autism and ADHD in particular because these neurotypical “cousins” (some of us have both) will continue into a person’s life forever.
But yesterday, I had a conversation with a teacher that only I could have.
In the Neurodiversity community, we do take some flak about yelling at parents. We tell them not to do this or not to do that. When they say their lives are hard, we invite them to suck it up. We’re kinda mean that way, I guess.
But there’s a reason behind our “meanness.”
Here, I unpack why parents of Disabled children suck (and also present the alternative: the “Warrior parents” we totally want in our activist movement):
This post should be about how much I am insightful about my child’s needs, judging from the title. And I believe I am good at that sort of thing. However, this post is not that. Instead, because I was asked if I was another person’s mother multiple times yesterday, I thought this would be far more interesting to talk about, given the current Autistic community speaking out about being great parents in the wake of #BoycottToSiri.
As the setup to this story, I have a lone 8th grader. He’s pretty amazing, if I do say so myself, and part of why he’s amazing is how much progress he’s made in the last year and a bit since I came to this school. He used to be very silent, especially around adults, and took a very long time to read. His work was adequate at best and he seemed to be behind grade level.
This year, he’s at grade level and can explain things better than most 8th graders in other schools (since we have no basis for comparison here, we have to look elsewhere; this is probably a good thing and less stressful for him anyway).
Because we have a large developmental gap between him and my next youngest student who fits in best with the 4th/5th graders, he likes to work in the office. This works out fine because 1) we get another person to answer the doorbell, 2) I can teach him in between my work, if he needs it, which frees up the one-room schoolhouse, and 3) we can, when we’re both stressed play Uno or Yu-Gui-Oh, or what have you. He’s seemed to move along even faster, academically, since now he can choose the order he does things in (being mindful about what time I have that’s free to teach), and he still joins the rest of the class for meals, gym, and art. He even DIRECTS gym now, teaching the other kids games that country school kids used to play years ago like “Ghosts in the graveyard.” He learned about this game online.
So, this is my 8th grader, and because there IS such a gap between him and the others, and because he’s going to have learned as much as he can, being in the office with us, he wants to go to another school next year, and we found a charter that is project-based and quite small, with lots of quirky students he should fit in great with.
One of the things that’s difficult about being an Autistic parent of an Autistic is knowing how to raise my own kid.
See, my husband and I are Autistics of the generation that, in general, few people knew they were Autistic. We were the “do it and shut up” generation which meant that we were told to do things the same as our peers whether or not it “felt weird” or “hurt” or otherwise didn’t go as planned.
Obviously that only works so long, and our parents realized, over time, they had pretty weird kids.
My husband used to read a lot; using his reading, which is something in white culture is considered an advantage, especially when the child reads books above grade level, to hide. I used to do the same, but at recess, I’d swing a lot. A LOT, as in, the whole recess, and use the time on the swings to imagine my fantasy kingdom. Neither strategy makes a kid a lot of friends.
Side note: hiding to read or playing board games by yourself is considered anti-social in Black culture and you will be harassed and told by the adults to do something else if you use this common Autistic child trick as your escape method.
I got invited to birthday parties when we had to invite everyone, and my asthma and severe allergies meant that I was never going to have to stay overnight in a house with a dog, so I could cut my visits short.
Over time, though, they stopped inviting me, when it was an option not to invite the entire class. Parties became subtle, and I just assumed no one had them anymore.
Oh, they had them. They had them, and I wasn’t invited.
In Western culture, as women, we are expected to do it all. We are expected to work outside the home full-time because if we don’t, we’ve betrayed the feminist cause. We’re also supposed to be perfect mothers, raising our children in perfectly clean homes being fed perfectly balanced meals or we’re a bad mother. When we get tired about all this and ignore our husbands, we’re bad wives.
The rules also tell us we really ought to be going onto school to get a degree, then an advanced one. This will not only empower us, but we will advance in our careers.
But if we advance in our careers, who will care for our homes, children, and husbands?
In this way, women in general are overwhelmed in our culture.
But let’s add Autism into the mix.
As an Autistic mother of an Autistic child, I had a lot of problems when I dragged my kid in public because that’s what you do.
I worried that he’d run around. I worried he’d run away. I’d worry people were judging me because of my kid and whatever it would be that he’d do.
And I’d get insanely pissed off at things like how the library has all these self-checkouts which are supposed to be “helpful” but unless you have a kid who wants to help you check out books, you cannot both mind a child AND do your own checking out.
Unless you let watching the child go.
That seems to be the path neurotypicals around me were taking. They just figured, they were kids and they’d do what they did.
Of course, their kids running around doing whatever they want annoyed me, giving me sensory overload, while I was trying to manage my own son’s sensory overload because of their kids running around causing all the drama.
But for some reason they didn’t ever seem to worry about what people thought about their kids running around like little monsters.
They didn’t seem to, or have to, worry that someone might come to their home to take their child away because their child was being raised by a Disabled parent.
That is a thing, you know. In some states simply being Disabled is enough for child welfare to take your kids from you.
And they could move on after the wretched experience at the library and not obsess over it, thinking and planning about how it would be better the next time if I only…
See, one of the gifts-that-can-be-a-curse about Autism in women is we’re super-empathetic. Many of us can literally sense all the feelings around us and we cannot shut them out. You know all the old people at the library by which I mean all of the adults who do not have kids with them? They’re all judging you because you’re not minding your kids and letting them run around.
We feel that; neurotypicals shut it out.
Unfortunately we also obsess over things: we plan conversations for hours before we have them, and we mull over things that happen to us over and over again, trying to figure out what it was that we did wrong.
Because we learned a long time ago, that WE did wrong. It’s always us.
In Autism circles, we talk a lot about the Autism Mother. Typically, this person writes a blog and/or publishes posts on Facebook or Twitter to tell anyone who will listen about how his or her child was robbed from them due to Autism. Many of them insist it was the MMR vaccine, but others, who feel a bit more enlightened by science, are taken in by the Autism Speaks mantra about how Autism is a growing epidemic.
An epidemic that must be stopped at all costs.
For some background on why we get irritated with the Autism MomTM syndrome, visit this link to learn more about the Autist who created this term and why we take issue with these moms (or dads).
See, part of the reason why we get annoyed by these parents is because they make the narrative always about them. When you’re a parent, though, isn’t it supposed to be about your kid and what he or she needs, and not about what you as the parent needs? But for some reason, society allows this inverted family structure to continue: mom’s life sucks because of her child’s very existence.
You don’t get to do that with other issues without someone doing a PSA about it. I vaguely remember they do Public Service Announcements about not emotionally abusing your kids that are basically just this narrative: children hear you; don’t hurt your children by what you say. The words “I wish you were never born” come to mind…anyone else remember this ad that used to play?
Anyway, despite the fact that we’ve been told for years that this emotional abuse through words is wrong, for some reason, society gives these moms a “pass.”
And the thing of it is, the longer they whine and complain and are given all sorts of pats-on-the-back about how hard their lives supposedly are…that’s when the Eugenics monster shows up again, trying to pull us Autistics out of the gene pool so as to make neurotypicals’ lives better.
The Thinking Person’s Guide to Autism recently posted a great deal on ear defenders (ear muffs, headphones without plug-ins) from Boing Boing at its Facebook group. The deal is still there for a few days, and I snapped up 5 for my students at school. By the way, leave and come back until they give you 10% off on your first order. It almost paid for my shipping which was $9.95 on 5 of them, the maximum it would sell me at a time.
Anyway, some “helpful parent” was complaining about how ugly and bulky they are and that it’s basically license to get your kid bullied as a result. Later, she said, not realizing I was trying to help her not come off as a jerk, that there would be plenty of times it would be “inappropriate” to wear these headphones because of the bulk. She kept silencing the voice of 1) a more experienced Autism Mama than her (me; my kid is clearly older) and 2) MOST importantly, an ACTUAL AUTISTIC PERSON. Yeah, she’s new to this game.
She kept backpedaling to defend herself, rather than realize she was normalizing a systemic problem with society rather than focusing on her child’s needs.
Here’s why she’s wrong and how you can make the same point without enabling bullying or accepting the cruddy world we all of us are forced to live in.
Every so often in Catholic circles, you get the mom “helpfully” posting the link of the vaccines which have as a source aborted fetal tissue, or so the argument goes. They claim you cannot vaccinate your child with that version, and that since there isn’t a great MMR alternative, you should never get that.
I completely and fully respect the parent when it comes to decisions about whether or not to vaccinate. I believe the parent, not the government, should decide on what is best for his or her own child.
However, let’s take that stance apart a moment.
I believe in parent decisions because I am a Catholic school principal and I believe that if the government could, it would shut down my school. We have had to fight for our right to exist as a school, and there are even Supreme Court decisions that are involved in a parent’s right to educate their own children as they see fit.
HOWEVER, there are also court decisions regarding whether you can force others to listen to your opinion, whether that opinion be well-reasoned, or, well, kind of nutty.
And you can’t.
Here’s the exchange that was ticking me off today:
A parent of a former student called me to check in. He’s had a hard time since he left. I agreed to talk to the psychologist about our experiences with him.
I can’t reveal too much (as usual!) about the details, but suffice it to say, if I believed in functional labels (high-functioning/low-functioning), I would say, absolutely, that he was a “high-functioning” Autistic (for new people to the site, I DO NOT BELIEVE in these labels, but I will say he is very skilled at masking; the labels I only mention to serve a point as to how people who others believe are “high functioning” can be overlooked even though there is no such thing as “high functioning”). He’s been skilled at masking his Autism since he was in a tiny school until this year, and as the demands of moving into the tween years get harder, he’s struggling in and out of school. He’s one of those problematic types who is both academically gifted and Disabled, which the public schools have historically had a heck of a time with.
The psychologist was not impressed with my observations. I suspect she will discount them, not recognizing what it looks like to be an Autistic who does not have “Educational Autism” (fancy language in schools for “too good at school to get help”). Without a corresponding academic struggle, he will not be diagnosed and they will continue to wonder what’s “wrong” with him.
But I know him. I knew him last year, and I also knew that his mom wanted him to stay with us this year since she knew he was finally, finally making progress both academically and socially. He struggled at school for years not because he didn’t know all the things but because he lacked the executive function to turn materials in, or the impulse control to do what he was told.
He made so much progress he was three years ahead on standardized tests by the time I was done with him…in less than a year.
And yes, we were actually able to measure him on standardized tests; I’d reduced the stress enough that he was taking them seriously and able to focus on them.
Lest you think I’m bragging about being a miracle worker, let’s be perfectly clear: I didn’t DO anything…but I let him be himself and reduced his stress levels. I removed the meaningless hoops of homework for the sake of homework and requiring my kids to sit in a desk, not move, and not talk. And I listened to him, and argued and debated with him.
As a school principal and a parent, I get a few things about education in a way that other parents and principals might not.
First, I get that school is a “right” in a theoretical sense.
But I also get that administrators have to balance rights against each other. In other words, they have to make school safe for the majority with the limited budgets they have.
It was that understanding of reality that made me decide to homeschool our Autistic son. There is no way I can expect him to be in a group of other chatty people and have him have any sense of happiness. Perhaps if we had found my school with me as leader when he was younger (as in, pre-kindergarten in his case; his school damage was gigantic), it might have been different. We didn’t, and he doesn’t even like the idea of going back to school, so he won’t at this time. I figure, that’s okay, we’ll make it work.
But we have enough privilege to be able to have jobs that involve working at home. I used to score standardized tests at home, and my husband does testing for an Autistic-friendly company.
Not everyone has that, which is why I’m glad to have my school.
As a Catholic school principal, I am not merely charged with getting kids ready for college. I am, however, charged with getting them ready for college, work, to be a mom, dad, religious sister or brother, priest, etc. as well as getting them ready for heaven.
We take the long path. We are focused on much, much more than grades and college-preparation. It is a slow, winding journey with many missteps. We sin, we fall, but we confess and we learn and we do better the next time.
It is not as easy as preparing kids for college. There is so much more at stake in a Catholic school.
My kids know this and are good at forgiving each other for mistakes of all kinds. At least, they normally do. Long-term parents, also, know, that little dust-ups shall pass, and they move on pretty fast because they know the kids love each other and this is a safe place.
However, sometimes parents can be a bigger issue than the kids.
I had an issue this week with a parent who was upset because a student struck her child. He was uninjured. He hit back. She was uninjured.
Here’s what happened, and how the parent over-reacted because she was too busy advocating for her own child at the expense of other children.