Posted in Advocacy, Autistic Identity, Parenting, Self-Care

Assistive Technology Can be Ugly: Focus on Aesthetics, not Bully-Potential, to Build a New World

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.

[Image: Those big, bulky but effective and ever-prevalent ear defenders from 3M. They’re oversized and yellow. If your head is large, they might not work since they’re not adjustable, but they’re reasonably comfortable. But they are bulky. And that yellow makes SURE people can see them on your ears. But heck, they work and Amazon can get them to you quickly.  We have two pairs around here.]

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.

Continue reading “Assistive Technology Can be Ugly: Focus on Aesthetics, not Bully-Potential, to Build a New World”

Posted in Advocacy, Autistic Identity, Parenting

Why “You Do You” is Not Okay When it Comes to Vaccines

[Image: A white, male medical person in blue scrubs with a stethoscope around his neck brandishes a vaccine at you.  He’s got white gloves on and is like a scary-funny boogeyman.  He’s going to “get you” if you don’t watch out!]
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:

Continue reading “Why “You Do You” is Not Okay When it Comes to Vaccines”

Posted in Advocacy, Autistic Identity, writing

Missed Opportunities: Why I am Underemployed

I’ve mentioned, before, that I’m doing a job for which I would be paid at least triple what I’m making now, with full benefits when I now have none, if I could work in public schools.

I’m not unhappy I landed in Catholic ed., but even then there are different types of Catholic school jobs.   I’m meant to lead the outcasts.  On the plus side, we are the only school in town that would be actually making a difference because we are arming our kids to move into the middle class and self-advocate.  We take the time to find the right place to succeed.

But on the other hand, the lack of compensation and access to health insurance at a better price than on the health insurance market (our premium just doubled, and we were struggling to afford the price that it was to begin with) is stressful and takes its toll on my health.  Among Autistics, this problem is somewhat normal as many of us are underemployed.  We can find a job, but it’s the best we can do since the primo jobs are saved for people who can navigate the social structures better than we can, so we continue to struggle.

Here are times I had chances at better jobs, but simply couldn’t land them.

Continue reading “Missed Opportunities: Why I am Underemployed”

Posted in Advocacy, Autistic Identity, Identity, Neurodiversity, Parenting, Teaching

We Know Our Own: How Being Steeped in Autistic Culture Can Help You (Or Your Child) to Finally Feel Better!

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.

I treated him like a human being.

Continue reading “We Know Our Own: How Being Steeped in Autistic Culture Can Help You (Or Your Child) to Finally Feel Better!”

Posted in Advocacy, Autistic Identity, Neurodiversity

Difference or Disability?

When you talk to people in the Neurodiversity movement, one thing may stand out: Autistics may tend to focus on what we do well rather than focus on things we do not do well.  This makes one wonder whether Autism, ADHD, Dyslexia, Dysgraphia, or other brain-based differences are actual disabilities.  So, let’s talk about that.

Continue reading “Difference or Disability?”

Posted in Advocacy, Autistic Identity

The Costs of Hidden Disabilities: Why it Costs More to be Me

There’s a good Huffington Post Canada article that details some of the costs about being Disabled.  The article focuses primarily on the big-ticket items (mobility devices, etc.) but does mention food costs can be more expensive due to dietary restrictions.  This is an area where the ABC show Speechless is very honest; the family does not live well.  One parent works and the other is thereby more available to help the Disabled child in particular, but also the traditionally-developing children, as needed.  This is not a luxury; it is a necessity.  They even move into the most run-down house in the nicest neighborhood possible.  Why?  Better opportunities for all of their children.  This is one way in which the show demonstrates privilege in the Disability community; the family is poor, but not so poor they can’t move somewhere else.  This is most definitely a privilege not all families have.

[Image: A white woman with light brown hair wearing a white blouse, grey skirt, and black pumps, holds up a white calculator with many dollar signs on its display. She looks in shock at the viewer, over her black glasses.]
 

Let me mention at the outset that there are government funds for Disability in the U.S., but they require a family to live in poverty in order to obtain the funds. They limit how much the family can earn and what the family can own.  The idea underlying this is that we’ll help you if you’re really, really poor, but these funds aren’t to help you live a life on par with the non-disabled person.  Instead, they are a ticket to government scrutiny and shame and to keep you from becoming more of a drain on the public’s funding.  The strings associated with such funds keep a poor Disabled person poor and Disabled, but they can be a lifeline for many.

I wanted to share with you some of our family’s expenses that are “luxuries” to some and to point out how they are not for us in order to understand the costs of being a family with hidden Disabilities.

Continue reading “The Costs of Hidden Disabilities: Why it Costs More to be Me”

Posted in Advocacy, Autistic Identity, writing

Counterstorytelling: Crushing the Dominant Narrative by Telling our Own Stories

We have this otherwise banal hymn we do every so often in Catholic Masses that has this rather amazing chorus in terms of the words:

We come to share our story,
we come to break the bread,
we come to know our rising
from the dead.

At first glance, there’s not much here, but it’s really everything about the Mass.  For those who aren’t Catholic, we always do Mass in two parts (and we’re efficient as heck with it; when I was Lutheran, we didn’t do communion every Sunday, but when we did it took FOREVER, but I digress).  So, the first part is always story-telling.  We call it Liturgy of the Word.  We read two or three sections of the Bible and share part of the Psalms.  After the Liturgy of the Word, we have Liturgy of the Eucharist (the holy communion part).  What’s really neat, linguistically, about a Catholic Mass, is figuring out where all the words come from.  At one point, we had a poorer translation when it moved to English, for example, and said “Lord, I’m not worthy to receive You, but only say the word and my soul shall be healed.”  Sure, that was LITERALLY what we were preparing to do (remember, Catholics believe that the Eucharist IS the body/blood of Jesus, not a symbol).  Instead, we now say, “Lord, I’m not worthy that you should enter under my roof, but only say the word, and my soul shall be healed.”  If you know your Bible, you’ll know this is EXACTLY what Zaccheus said when Jesus picked him out of a crowd, sitting up in a tree so he could see Jesus walk by.  At every Mass, we tell our story, and we tell it over and over again.

If you’re a wordsmith, you can’t help to be fascinated by how various faith traditions share their stories whenever they gather together.  It’s their story for them and also to explain to all comers.

I know I’m losing some of the non-religious of you out there, but stick with me.  Let me tell you a little story that I saw recently.  Have a look here if you want the whole thing.  I must admit it originated in Buzzfeed, apparently, but I’m willing to buy it happened because it’s the kind of thing that HAPPENS.

So, Marlee Matlin, award-winning Deaf actress goes up for a role in which the character is (wait for it) Deaf.  The role later goes to a hearing person.  They later have the audacity to ask Matlin to coach the actress in “how to be Deaf.”  What was interesting was, when this was posted on The Thinking Person’s Guide to Autism, the first comments were that “well, maybe she wasn’t the best fit for the part.”  Maybe she wasn’t, but shouldn’t a Deaf actor play a Deaf character?  Matlin would likely have coached a Deaf actress who was new or feeling apprehensive about how the hearing audience might “read” her Deafness even if she didn’t get the part herself.  This would be an inoffensive request.  But to ask her to help someone pretend to be Deaf, which comes with it a culture, a community, and even its own freaking language (btw, American Sign Language (ASL) is not “translated English”…have a look at this great story to get a feel for how the language looks, in print form: http://www.deafpoetssociety.com/raymond-luczak-prose; we were fan-girling (and fan-boying) over this in editing class; it’s a good story, not just a “gimmick”).  So, yeah, it’s like saying, well, we needed a Black actress, but we decided a white actress would be fine here, and we’ll find some Black actress to teach her how to be Black.

So, it’s not cool.

Continue reading “Counterstorytelling: Crushing the Dominant Narrative by Telling our Own Stories”

Posted in Advocacy, Disability in Education, Teaching

How (Not) to Discuss Disability in 2016 (or 2017, or…)

This happened within about two weeks of my return to teaching last year.  Given all of the flak I get for talking about taking Disabled students now that I’m a principal, I imagine this blog to be still relevant.  In interacting with the one group dedicated to inclusive education in Catholic schools on Facebook which is only run by parents and insists on person-first language and fills my feed with inspiration-porn…very little has changed.

So, let’s explore how NOT to discuss Disability in Catholic Education (or in any educational or religious circles)…

Continue reading “How (Not) to Discuss Disability in 2016 (or 2017, or…)”

Posted in Advocacy, Identity, School Leadership

On Being Without

I had a humbling experience this week.

I had to admit we couldn’t serve the needs a child had and counsel the parents out of our school.

By way of backstory, my own child was kicked from his Catholic school for being Autistic when he was in pre-school.  We ended up homeschooling.  He’s happy, and we’re happy.

It was not handled well and we left our church because we were pushed out, not counseled.

But I just had to do it to another family.

Continue reading “On Being Without”