Friday, July 13, 2018

Toilet Paper, My Vulva, and the #StrawBan

Image is blue background with four text
blocks. Middle text block reads:
"How to react when a disabled person discloses
their access needs to you: (Explained by narwhals)

a small circular text block/bubble underneath is next to a bright pink cartoon narwhal and reads:

"I need a specific accommodation so that this space is accessible to me!"

The large left side text box has large red letters that say "YES!" on top of black text that reads:

"I am sorry that this space is not accessible!
Everyone deserves to be included, so thank you for bringing this to my attention! You certainly know your needs best and it would be incredibly rude and ableist of me to assume that I know better!
Can you help me by telling me what I need to do or directing me to information so that I can find ways to solve this inaccessibility problem?
We can all enjoy this space together!"

A smiling cartoon orange narwhal is under the text.

The large text box to the right has large red text that reads "NO!" on top of black text that reads:

"But why?
Have you tried doing it this way?
You don't look that disabled.
Why didn't you stay at home if you need so much help?
Are you sure you can't do this instead?
What kind of disability do you have?
That is rude.
How much will this cost ?
Just because you're disabled, that doesn't mean the world has to bend to your will.
You are being very selfish.
Do you have any proof that you need this?
Everyone else is doing it this way.
My brother's co-worker's second cousin once removed has the same disability that you have and they do not need this accommodation.
Wow, it really hurt my feelings that you think this is not
accessible. "

A frowning green cartoon narwhal is under that text. watermark is on the bottom left of image.
Someone made a choice (without consulting me) about my access to necessary equipment I rely upon for my health, independence, and well-being this week, and I'm not talking about the Seattle Straw Ban, although I've spent a great deal of time discussing it on my personal Facebook page and elsewhere, recently.

No, I'm talking about the Great Toilet Paper Swap of 2018, which shall henceforth evoke visuals of little pilled rolls of fiber, and friction burns in delicate places.

Here's the thing... When Mr. Wright went to the grocery store and saw that my preferred brand wasn't available in the multi-roll package with the roll count he preferred (for savings), he thought it was No Big Deal (NBD) to get a different brand, and save a few dollars in the process.

Saving money was his primary goal, for the good of the family, and he felt accomplished in being so conscientious. I think a lot of us can relate. Being responsible and conscientious makes us feel good about ourselves.

So, what does this have to do with the straw ban?


The first time I tried using the bargain toilet paper, it fell apart. It rolled up into little wads that separated from the sheet, and... clung... to my skin. It was a firetrucking disaster, hygienically speaking.

Access to good hygiene is -- at best -- a health concern, and -- at worst -- a matter of life and death. I think we can all agree on that.
But for many people with disabilities, going without plastic straws isn't a question of how much they care about dolphins or sea turtles; it can be a matter of life or death.

Maybe I'd changed my technique? Maybe I needed a bikini wax? I couldn't figure out what was causing the structural failure of the paper, and I really tried to make it work. I tried dabbing, instead of wiping. I tried drip-drying before patting dry, instead of wiping.

Nothing improved the performance, and it fell apart when I helped my toddler post-potty.

Clearly, THIS SUBSTITUTE for my usual toilet paper wasn't compatible with MY INDIVIDUAL NEEDS, or those of other family members, even though I tried everything I could think of to make it work, because I like to save money, too. I like to feel accomplished and conscientious, just as much as my husband does.

Maybe this paper works for other people. Maybe it works for people without sensory issues, or who have different skin, or who only use it to groom butterflies, or whatever. But it doesn't work for my family.

While reusable straws and redesigned cups may be a great solution for most people, they are not an option for many people with disabilities. For example, paper straws, which are most often cited as the best alternative, are not temperature safe, often dissolve in water and can become a choking hazard. As for lids designed to be used without a straw, they require the cup to be lifted by the user, which many people cannot do.

So, I went to Mr. Wright, and I said, "Hey. I know you don't have a vulva, so your experience is going be different than mine, I know. You don't have all the extra folds and bits that come with vulva ownership, so you might not understand, but this new toilet paper really doesn't work. It keeps self-destructing. It's kind of gross, and could we get rid of it, and replace it with the stuff we normally use and rely upon? Could we donate it to someone who might be able to use it without tissue issues?"

And he said, "Wow! I didn't know that was happening! As the only male in the house, I didn't that about how changing our toilet paper might affect the rest of you. I just thought about the savings. Thank you for letting me know. Of course, I'll make sure you have toilet tissue that works for you. Your vulva is important to me!"

I know some of you are wondering why this exchange was, and is, significant.

I know some of you are thinking, Of COURSE he should get you the toilet paper you need. It's such a simple thing.

And, I know others of you are thinking, What's the big firetrucking deal? It's TOILET PAPER! Just go get some, yourself, or use what's available, and deal with it. WHY IS THIS SO HARD?

The toilet paper doesn't work for me. It doesn't work for my daughters. He loves us. He wants us to know we're important. He's headed out to get toilet paper we can use.

He's showing us his respect and understanding, by making what we need available. He's showing us we're important to him, and our needs matter, even though they aren't the same as his.

It was so simple, and so easy to resolve. I communicated a need. I explained why the conscientious, money-saving solution didn't work for me, personally (or the other females in our home), and what was needed, instead.

And he responded by acknowledging my need, understanding that his experience is not the same as mine, and offering a solution that ensured I have access to what I need.

That's how it should be.

Unfortunately, I've watched the disabled community get marginalized time and again since news of the straw ban hit.

Many disabled people rely on single-use plastic straws, as a matter of survival. My grandfather, who was paralyzed in his final years, was simply one of many, many people who rely upon single-use plastic straws as a matter of access, independence, or literally life-versus-death.

Although there are numerous alternatives to plastic straws, such as metal, acrylic, glass, wheat- or corn-based compostable, paper, and more, some of those alternatives don't work for some disabled folks.

For my grandfather, metal, acrylic, glass, or other rigid designs not only posed a choking hazard, but also posed an elevated risk for cuts, tooth damage, and more, since he had tremors and diminished jaw control.

For folks who have allergies to corn or wheat, or celiac disease, bioplastics or straws made from those materials pose a definite health risk.

Paper straws tend to break down and can pose a choking hazard, especially for those who may need more time to consume fluids.

Some of the alternatives don't work for thickened liquids required for the nutrition of some disabled people.

I could go on, but suffice it to say that for some people, alternatives to single-use plastic straws don't work.

Naturally, for the good of the planet, we should all do as much as we can to reduce our planet's reliance on petroleum products, and reduce our waste and consumption of single-use packaging and utensils as much as possible. HOWEVER, it's simply not possible, for some of the disabled community.

Further, some of the discourse on the subject has been particularly disturbing, as disabled folks are being openly ignored, talked over, or shamed for their needs when they try to explain to the abled community what their specific needs are, and why an outright ban doesn't make for good policy.

(Image is a pink cartoon narwhal under a white bubble with question marks, an image of the earth and a plastic straw. Black text to the left reads: 
"How do plastic straw bans hurt disabled people?
Many disabled people need plastic straws to eat and drink. It provides access and they are literally keeping some of us alive! We don't hate the earth, but we really like being alive and able to access our communities!
-Paper and biodegradable straws break down faster than many of us can use them.
-Metal straws can cause injury if they are too hot or cold and also if the person has a disability that affects movement and motor skills.
-Reusable straws are great if you have the ability to wash, store and bring them with you every time you leave your house. Many disabled people do not.
-If you don't need a plastic straw, then don't use one, but you don't need to hurt disabled people to show that you love the earth.
-Punishing disabled people who need plastic straws to live will have very little impact on the environment but looking into creating a more viable and ACCESSIBLE alternative to single use plastic and placing greater regulations on businesses that are polluting the earth on a much larger, much more dangerous scale sure would!"

I've seen commenters say that the disabled should use reusable straws. When the disabled say they can't wash them, the abled say they should hire or recruit someone to come to their house to scrub their straws for them -- as if everyone has a budget to hire staff, or neighbors who are willing to sacrifice their time and effort on a regular and reliable basis, without compensation.

While the above might be, at best, attributed to the abled being out of touch, some of the backlash against the disabled has been worse:

"If you're too disabled to scrub a straw or use paper straws, you should have a feeding tube." Which, by the way, use single-use plastics, too. Ha.

"If you're too disabled to go without a straw, you shouldn't be visiting restaurants."

"We should only have flexible plastic straws in hospitals, convalescence centers, and nursing homes, because that's where disabled people belong."

"Disabled people are just making excuses!"

"Our planet is more important than their needs. Survival of the fittest!"

Readers, you may or may not know that Mr. Wright is a Norwex consultant. We use stainless straws at home. We use reusable, washable produce bags. Reusable shopping bags. Phosphate-free, natural cleaners, soaps, detergents, and more. We use dryer balls instead of dryer sheets. (Shameless plug... we get all these from Norwex, and you can, too, at the link I've provided.)

Our family -- while having disabled members -- remains incredibly privileged. We do our part to reduce/reuse/recycle, to offset the needs of those who can't.

When it comes to the needs of an already marginalized and disenfranchised population, can't we feel good about the choices we make, while ALSO providing access for those who don't have a choice?

Bottom line: If you don't need a single-use plastic straw, don't use one. The planet thanks you. But don't shame, degrade, or devalue those who do need them. Access and independence are for everyone.

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Wednesday, March 14, 2018

A Grown-Ass Man Catcalled My 11-Year Old

Photo is of a smiling 11-year old girl named Snugglebug,
with shoulder-length brown hair and sunglasses,
standing on a balcony with a pond, green lawn,
and trees visible in the background.
***The events of this story are shared with Snugglebug's permission.***

Monday afternoon, the girls and I took a walk to the nearby grocery store. Snugglebug and Curlytop took turns pushing Pumpkin in the stroller, and we caught Pokemon along the way.

As we transitioned from the sidewalk to the parking lot, a truck slowed down. The thirtysomething driver rolled down his window, and said, "Hey, baby..." while making eye contact with Snugglebug.

She's 11, y'all.

She plays with Teenage Mutant Ninja Turtles and plays Minecraft and Animal Jam.

She doesn't want to wear makeup, even though some of her peers do, and if I can get her to brush her hair in the morning, I consider it a victory.

This is not a kid who has been sexualized, or pushes the boundaries of age-appropriate behavior or appearance.

And... she was pissed.


I hadn't heard the exchange. I was talking to Curlytop when it occurred. I'd seen the truck slow down, but assumed it was slowing because the driver was being cautious of us pedestrians.

If I'd heard it, I would have lost my Jesus with that man.

I agreed with her, and I told her that sometimes, "putting up the middle finger" at someone is an acceptable response.

Yeah. I gave my kid permission to flip off an adult.

She mentioned the offense several times during our shopping, and several more times on the walk back home.

"What was I even doing? Why did he do that?"

"I think he was looking at my butt." (She was wearing sweatpants and a baggy sweatshirt. She didn't even feel her butt was safe from his violating gaze in sweatpants, y'all.)

"That made me really uncomfortable."

"No adult man should talk to a kid like that."

She's right, you know.

And, as furious as I was at the grown-ass man who took it upon himself to sexualize my baby, I was dedicated to letting her speak her mind, and to process it, with me as a sounding board. 

As she did so, I realized something: 
  • At her age, my two best friends and I had already been molested by my sixth grade teacher. When we told the principal, our teacher was forced to apologize for any "misunderstanding," and we were sent back into his classroom every single day for more abuse, until the end of the school year. 
  • At her age, those catcalls from grown men in my community were commonplace. We girls were told to ignore it, and we learned to giggle and roll our eyes.
  • At her age, one time when I was riding my bike, a grown man yelled out, "Life would be so sweet if my face was that bicycle seat!" I didn't know what he meant until years later, and when I realized, I was retroactively grossed out, ashamed, and embarrassed. There were several other men standing with him, and they all laughed. No one admonished him.
  • At her age, I'd already had one man expose his erect penis to me when I got separated from my mom in Kmart. After I found my mom and we reported it to store security, we were told that the man had mental health issues, and probably didn't know what he was doing.
  • At her age, I'd been told so many times to change behaviors that weren't "ladylike," I was already self-conscious of everything I did in view of adults and peers.
  • At her age, I'd already learned that being objectified was part of my female life, and the sooner I learned to accept it, the less painful life would be.
  • At her age, I lived in a strange, dichotomous world where I played with Cabbage Patch Dolls, read Laura Ingalls Wilder books, and climbed trees, but also had my breasts and thighs stroked by a grown man. 
  • At her age, I learned that anger and outrage weren't feminine, but silence and submission were.
  • At her age, I learned that the attention of grown men was something I couldn't escape, so I had to learn to accept it.
And you know what? 

I renewed my vow that my daughters will never be 11-year old me.

No one will ever tell my daughters they're overreacting to the bad actions of grown men.

No one will ever tell them to "get over it," or "just ignore it."

No one will ever tell them that being objectified is part of female life, and the sooner they accept it, the less painful life will be.

My daughters are the owners of their bodies, and they get to protect those bodies.

Snugglebug was outraged because she knows her body is hers, and when someone objectifies her, they are the one in the wrong.

She was outraged because that man treated her with a level of familiarity she had not given him permission to use.

She was outraged because she had not done anything to call attention to herself, yet received it, anyway.

She was angry because she knows she is a child, and she knows that adults who sexualize children are gross, and capable of criminal sexual violence. (She reminded me that her plan -- if any adult man ever tried to touch her body without permission -- was to "kick him in the balls, as hard as I can, and get away while he's on the ground in pain," and I applauded.)

She was angry because she was just trying to enjoy a walk with her mom and sisters, and some grown-ass man had to ruin it for her.

She was angry because she has every right to be.

My daughters will never be 11-year old me.

Anger and outrage, today, to me, are no longer anti-feminine.

Appropriately applied, they are the epitome of feminine power, and I won't allow my girls to be silenced into submission.

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Friday, September 8, 2017

To The Parent Whose Child Just Received an Autism Diagnosis

Image is a blue background with white letters which read:
"Dear Parent, It'll be okay. I promise. Here are some tips.
Love, The Gonzo Mama." Pink lips in the shape of a "kiss"
appear in the lower right corner.
Hello, readers. I've recently been giving this topic a lot of thought, as I've been going through the diagnosis process with Bravo, and thinking about how different it feels, this time around.

When Curlytop was diagnosed, it wasn't news to us, because we knew who she was, and she had been with us for over eight years. We'd been asking and asking for someone to please, see what we are seeing, and give this kid a diagnosis, so we could arm her with the empowering language and identity she would need, as she grows to adulthood. Self-identification ("I'm autistic") is such an important part of self-advocacy ("so I may need accommodation"), and we wanted to ensure she was equipped with that personal toolbox.

And now, we have Bravo. Going through the diagnosis process was different, but just as important. Autism "looks different" in girls, you know? So, it's often easier to spot in boys, and the assessments and observations go more smoothly, and it's really just "yes, it's autism," or "no, it's not." In any event, we already knew Bravo was autistic, so the diagnosis was just a formality, just like in Curlytop's case.

Even though I knew I was autistic, I wasn't diagnosed in childhood, so I had no idea what an "autistic childhood" should or would look like, when Curlytop was diagnosed. I just kind of muddled through childhood and adolescence as the weird girl who didn't understand relationships and friendships, who was always writing or had her nose in a book so she didn't have to talk to people, and had a really overwhelming obsession with numbers and counting things like the number of steps from English class to History class, the number of seconds it took to evacuate the building during fire drills, and the number of tiles in the Science room.

I didn't have an autistic childhood. I had a really difficult, painful, tumultuous adolescence, and when I learned in adulthood that it was autism, it all made sense. It was freeing, liberating, and soothing. Everything I knew about myself fell into place.

How much easier would it have been, had I been able to -- and encouraged to -- identify as autistic in my youth? A large part of me wants to believe I would have mastered self-advocacy much earlier, and I would have felt safer, more comfortable, and less like an outcast. Of course, I'll never know, but I want every autistic kid to have the opportunity to learn self-love, self-identity, and self-advocacy.

Our job, as parents, is to provide those opportunities.

When Curlytop was diagnosed, because I didn't have a model for autistic childhood, I was easily influenced by marketing, false-advocacy, and pressure from healthcare professionals. It took me a full year to gain stable footing as an independent parent and advocate for my child (and myself!), and that footing actually didn't come from parenting communities or "Autism Awareness" campaigns or healthcare providers.

It came from my growing network and community of autistic adults.

What sort of future do I hope for, for my daughter, and the children in my care? I hope for one in which they are fierce, are proud of who they are, are in possession of strong and healthy boundaries, and ask for and receive help when they need it. So, it only makes sense to start setting that future up for them by learning from people who are already living it.

If I could go back to that day of Curlytop's diagnosis, armed with the knowledge I have now, this is what I wish someone had said to me, and what I'm glad I know, this time around (some of these things I already knew, but it would have been great to receive affirmation):

1. Your child's diagnosis does not change who they are, or who you are. 

You've known your child since birth (or -- for families created through adoption, kinship care, guardianship, or foster care -- since placement). You know who your child is. You've been together for a while, and your relationship is not changed by a medical proclamation. Your child is still your child, and your job is still to make your child feel safe, secured, loved, and protected in the world, while helping them to develop into the most beautifully awesome version of themselves they were meant to be.

2. You don't have to change anything, right this minute. 

Really. It's true. Your child was autistic yesterday, and they will be autistic tomorrow, and for the rest of their lives. Taking a little time to research, ask questions, and listen to your child and your heart will not doom them to failure.

3. You DO need to decide one thing, right NOW.

Right now, before you do anything else, you need to decide what kind of parent you are going to be as your child grows to adulthood, and beyond.

Are you going to be the kind of parent who shares things like, "You might be an autism parent if..." memes, without considering if they are offensive or harmful to your child and the autistic community?

Are you going to be the kind of parent who compulsively "likes" and follows every single Facebook page or social media community that has "autism" in the name, without first learning what the page's or organization's views and positions are, and whether those positions are in opposition to the autistic community?

Are you going to be the kind of parent who shares "inspiring" videos about how a football team helped an autistic kid make his first touchdown, without first asking yourself if the video exploits the autistic individual, for the sole purpose of spotlighting the non-disabled people, just to make them feel good/seem hero-like?

Are you going to be the kind of parent who consents to and agrees to everything your child's healthcare provider suggests, without weighing the risks and benefits for your individual child?

Are you going to be the kind of parent who is supports and embraces the notion that autism "stole" your child?


Are you going to be the kind of parent who establishes healthy boundaries for your social media and real-life conversational sharing?

(Hint: Talking about your child's poop, "stimming," or other behaviors in any way that could be embarrassing or uncomfortable for your child is robbing them of their dignity, and, likely, their ability to feel they can trust you. I'm the first to admit I have been reckless in this regard, in the past, but I've found clarity and sense over time. This post is insightful, though it uses PFL (see point number 4, below), and has some excellent points for consideration.)

Are you going to be the kind of parent who thoughtfully considers the values of a community, social media group, or fan page, and the impact of those values on autistics, before joining or following?

Are you going to be the kind of parent who researches thoroughly every single so-called "advocacy" organization before supporting it, amplifying its messages, or using its symbols and slogans to show your advocacy for your child?

(For example, I always tell parents to stay far, far away from "the puzzle piece," "Autism Awareness," and other high-dollar advertising which have become synonymous with autism in general, but do very little to actually advocate for autistics, and, in fact, may harm autistics through words or policy.

Are you going to be the parent who doesn't rush to enroll their child in recommended therapies without researching the methods used, and the possible future implications, first? (See my post on Applied Behavioral Analysis (ABA) therapy, here.)

Are you going to be the parent who embraces everything that your child is, and helps them to become confident in their identity?

4. Learn how to talk about autism, and work through your own misconceptions. Get comfortable with the language, and get uncomfortable when people use language that doesn't respect your child.

This link has some really, really good information about five common language mistakes people make when talking about autistic children. It requires a download of a PDF, but I strongly suggest you not only download it, but also print it out for future use. Make copies to give to educators and service providers. The document is crafted by autistic voices, and when we talk about autism, those voices are the strongest -- and only -- authority on the subject.

Much debate has been seen among my blog comments and social media comments about person-first language (PFL) versus identity-first language (IFL) when talking to and about autistics.

Back when I was getting familiar with and comfortable with not only Curlytop's, but also my own, autism, I fell victim to the "PFL is always respectful, polite, and correct" dogma. However, after talking to actual autistics, I learned why a great majority of (but not all) autistics prefer IFL.

5. Decide, right now -- RIGHT THIS VERY MINUTE -- whether you are going to be an "autism parent," OR "the parent of an autistic child."

It may seem like I'm trying to exaggerate what could be interpreted as a small issue of semantics, but the difference is huge.

If you identify as an "autism parent," the emphasis -- the priority -- is on you, and your identity.

When you're "the parent of autistic child," the emphasis -- and thus, the priority -- is on your child, and your child's identity.

It's staggering how such a small difference in wording can create such a huge difference in advocacy positions, attitudes, and effectiveness.

6. Your child needs to see you advocate for them.

Your child needs to see you fighting for them... so they learn they are worth fighting for. 

Your child needs to see you educating others about autism, autistic rights, acceptance, and inclusion... so they can learn to teach others the same.

Your child needs to see you changing the world for them... so they can change it for others.

PARENTS WHO HAVE AUTISTIC CHILDREN: What do YOU wish you had known, or done, when your child was diagnosed?

PARENTS WHOSE CHILD WAS RECENTLY DIAGNOSED: What questions, as the parent of a newly-diagnosed child, do you have?

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Wednesday, August 30, 2017

The First Day of School... Kind Of

We all got up this morning, with big plans.

Mine was to get the kids off to school, send Pumpkin off with Mr. Wright to take pictures of some house a million miles away, enjoy an adult beverage or six, and take a bubble bath. Maybe crawl back into bed. Whatever it ended up being, it was going to be gloriously kid-free. (See photo.)


So, I got the girls on the bus, and off to middle school:

And got the boys ready:

But I decided to take the boys to school, myself, rather than putting them on the bus, because Bravo had not yet been assigned to a teacher. 

Here we are, on the first day of school, and the kid DOESN'T HAVE A TEACHER, YET.

Let me back up a little...

Our district has a pre-K program available for kids who qualify for it. Basically, if their assessments show they're deficient by a certain percentage in one area, or a cumulative percentage over all areas, they're "in." Well, Bravo came to us with an IEP, so he was "in." He finished out the year with the pre-K program, and at the end of school, his teachers told him how much they would miss him, and how excited they were that he was now going to be a BIG KINDERGARTNER! Woot!

They may have also said something like I needed to fill out a packet for Kindergarten, if he was going to be in district when school started, but, you know, we're doing kinship care, and the plan is for him to go home, so back in June, I had no idea if he was going to be around when fall came, so I sort of filed the information in my "Think About It Later" file.

And there it stayed. Right up until Monday, when I was reminded that he still wasn't registered for school. Aw, firetruck...

So, on Monday, I packed the baby into the stroller, walked a couple blocks to the district office, and filled out the paperwork for him to be a BIG KINDERGARTNER, and turned it in (not without some struggle, because I don't have access to a lot of necessary documents, like his birth certificate, and so on). But, I got it done. 

Then, I was reminded that if I wanted him to attend the same school as his brother, I would need to "choice" him, and that was a completely different set of forms.

Let me back up a little further...

A few years ago, the boundary lines for our schools changed. Our house is in this weird little pocket that got changed from the school Curlytop and Snugglebug had been attending, to this other school. At that time, we sat down with the team, and determined it would be best for the girls to stay in the school they were already in, since their supports were already set up, we had a great working relationship with the team, and it was a familiar environment for them. So, we just had to "choice" them to the school they were already attending. And it was no big deal. 

So, when we got the boys, we "choiced" Alpha into the school Snugglebug was, and had been attending for years, because... one bus, convenience, and all that. (Curlytop had moved on to middle school by that time. Interestingly, she moved on to a middle school out of our boundary, because of the elementary school she had been "choiced" into. Snugglebug joined her, there, this year.)

Anyway, I filled out the choice forms, and was told we should have an approval by Tuesday, unless for some weird reason the superintendent decided to deny it. Good thing, since school starts on Wednesday, right?

Yesterday, I got the call that it had been approved, which was awesome. I asked who his teacher would be, and the district rep didn't know, but said the school should have that information for me. 

I was tied up yesterday for quite a while, and didn't get a chance to call the school until after everyone had already left the office, so I was a little anxious, knowing school would be starting today, and poor Bravo still didn't know who his teacher was.

So, this morning, I just drove the boys to school, and trotted into the office with Bravo. "Who's his teacher?" I asked.

"We don't have him assigned to a teacher, but we should have that information for you by tomorrow."

BY TOMORROW? I mean, this kid was sitting there, in the office, with his backpack on, and his shoes that weren't scuffed, yet, and his sweet little clean face, and all the other kids were heading off to their classrooms, and we would know tomorrow who his teacher was?

"So, what do I do? Do I just... take him home for today?"

I got a blank stare from the secretary. After a moment, she recovered, and said, "Kindergarten starts next week. You know that, right?"


Anyway, here's what my plans have been changed to, today:

I think he's a little disappointed. I am, too.

I swear, Southern Comfort, we will see each other again, soon.

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Monday, August 28, 2017

Get Out of My Face with Your "Quiet Hands"

In case you're out of the loop, we have two amazing kiddos staying with us through kinship care right now. That's right -- two bonus boys: Alpha, 8, and Bravo, 5 (almost 6).

Anyway, I had to take Bravo into the school today to meet with the school psychologist for some cognitive testing, as his IEP review is due before his birthday next month. I haven't worked with this psychologist before, and he seems like a nice enough guy, but I'm pretty sure he hates me now, because... you know... I can never seem to hold my firetrucking tongue when it comes to the treatment and education of the kiddos in my care.

So, I'm filling out the ABAS-3 (Adaptive Behavior Assessment System, Third Edition) while Mr. Psychologist gets out some puzzle pieces to begin testing. He's working in tandem with the SLP (Speech & Language Pathologist), and they're tag-teaming... Mr. Psychologist performs one part of his test, and then Ms. SLP performs one part of hers, and so on.

Everything is going fine -- I'm working on one side of the table on the ABAS, Mr. Psychologist, Bravo, and Ms. SLP are working on the other side. Mr. Psychologist has killed the fan in the room because the noise is distracting to me, and it's all good, until I hear it: Bravo, "quiet hands," please.

They were in the middle of testing, and Mr. Psychologist had asked me not to intervene with the testing process, so I lifted my head, gave the psych a look (he was too engrossed in the testing to notice), and went back to the ABAS.

When he finished the test portion, I butted in before Ms. SLP could begin her portion.

"Is this a stopping point?" I asked.

"Sort of," he said.

"May I speak, frankly?" I asked.

"Errrr... of course..." he ventured.

"Okay. So, we're a house full of neurodiversity and neurodivergence. We don't subscribe to ABA (Applied Behavior Analysis) therapy, its tactics, its goals, or its dictionary. We don't use phrases like, 'quiet hands.' We believe physical stimming is healthy and productive, and we don't force children to refrain from it, hide it, or minimize it."

There was a brief moment of uncomfortable silence, and Mr. Psychologist cleared his throat. "I understand that. That's great. I actually didn't even know that 'quiet hands' was an ABA thing."

Like, this guy wanted me to believe that he pursued an education in psychology -- presumably, with an emphasis on child development, at some point? -- to the point of receiving a degree, but had NEVER HEARD THE PHRASE "QUIET HANDS," IN THE CONTEXT OF ABA? I gave him the benefit of the doubt, in any event.

"Gentle redirection to return focus to the task at hand is fine," I said, "but I don't endorse attempts to restrict physical stims."

I let it go at that, but I wanted to scream, "BUT IT SERVES THE SAME PURPOSE, DOESN'T IT?! Does it even MATTER where you heard it, when what you want the child to do is stop his physical stimming?!""

Let me explain.

Applied Behavior Analysis (ABA) is compliance-based "therapy" popular with parents of autistic children, which includes goals such as "reducing inappropriate behavior," "increasing socially acceptable behaviors," and "increasing appropriate and effective communication." Its primary goal? To "fix" autistic children, "correcting" their behaviors, so they appear more neurotypical ("less autistic"), drawing less attention to themselves and their caregivers, so those caregivers and society at large can feel more comfortable around them.

If you're not grasping why ABA is harmful to autistics, try reading "Quiet Hands," by Julia Bascom.

Is that too artsy for you? Try this one from Amy Sequenzia, of the Autistic Women's Network.

Want to see what this compliance-based indoctrination looks like as it carries into adulthood? Read this post from Neurodivergent K.

Anyway, so I was trying to explain to Mr. Wright that the new school psychologist hates me, now, and I started telling him the story, and when I got to the part about hearing "quiet hands," he fell out of his chair, laughing.

Not because he thinks ABA is funny, but because he's been in IEP meetings with me, before.

He said, "Ohhhhhhhhhh, hell... QUIET HANDS? Did you lose your ever loving shit? Were you standing on your toes? Were you doing that? I can just see you, standing on your toes! You do that, you know!"

Well, no. I was sitting down, actually. Mostly, anyway. I may have been slightly out of my seat. Reaching across the table. With my hands ready to snap the guy's neck.

But mostly, I was sitting. Technically. Pretty much, anyway.

Mr. Wright asked what I hoped to gain from the exchange, and suggested that I simply wanted the guy to acknowledge that I am right about this issue. I thought about it, and replied, "No. I want people to earnestly consider the weight and implications of the ideals they hold dear, and I want them to come to the conclusion on their own that what they've learned or been taught may be wrong. I want them to realize they've got it all wrong, when it comes to the autistic community."

"In other words," he said, chuckling, "you want to be right?"

Well, yes. And, also, no.

See, I didn't come to enlightenment by nature. Nooooooo... I actually thought the "professionals" who were overseeing medical care for my children had all the knowledge, and I didn't really question their advice, until I hit a roadblock. ABA was one of many therapies suggested for Curlytop when she was diagnosed, and it wasn't available in our area for her. At first, I was devastated. Like, I didn't have the benefit of any type of interventions when I was growing up, so I wanted to make sure she had EVERYTHING that could possibly help her to succeed, so I went on a wild crusade to find an ABA provider, and did a ton of research to help find one.

It was that research that led to my enlightenment. I talked to actual autistics who had been subjected to ABA therapies as children, and learned that some of them had PTSD as a result of their experiences.

I thought about my own experiences, and my own struggles, and how difficult extended eye contact was -- and is -- for me, and how I always got poor grades in speech class because I couldn't look at my audience, and how I deal with that now (by simply saying to people, "Eye contact is really difficult for me. Please don't think I'm not listening to you if I'm not looking at you. I can actually listen better by NOT looking at you."), and how I'm actually existing pretty successfully in the world. I realized that if Curlytop doesn't get forced to initiate eye contact she doesn't feel comfortable with, it's going to be okay. She will be okay. She'll be better than okay... she'll feel safe, and comfortable, and accepted.

I thought about how I was always getting in trouble for having "fidgets" in class (my old-school favorite fidget was a retractable ballpoint pen with a button on top which I would click until my Spanish teacher took it away and gave me detention), and how we've come a long way in recognizing that fidget objects can be healthy devices which can help people concentrate.

I thought about how my fourth grade teacher called me out in front of the whole class for scrunching my nose like a rabbit, repeatedly, while I was silently reading, and how humiliated I was, and I was proud that my daughter felt safe enough to engage in her verbal "squawking" during times of stress and excitement, because we've never shamed her or tried to restrict it. It's just a really sweet, cute part of who she is.

And, just like that, ABA therapy was off the table for us, and for our children. We'd rather spend our time helping others to understand, accept, and embrace neurodiversity than spend it trying to mask the neurology and personalities of our children, who are amazing and perfect, as they are.

So, it's not so much that I want to be right about ABA as it is that I want others to consider that they may have it all wrong, when it comes to educating and serving autistic children. What if there's a better way? What if -- rather than trying to force them to be "less autistic" -- the best way to help them is to educate everyone else around them about neurodiversity? What if promoting autism ACCEPTANCE is superior to downplaying autism "SYMPTOMS/BEHAVIORS?"

Anywayyyyyyyyyy... I have to go back at 11am with Bravo tomorrow.

What do you want to bet that Mr. Psychologist will be all too keenly and freshly aware of my own personal hand-stimming (specifically, "clicking" my fingernails by placing my thumbnail under one fingernail, then pushing up and down, creating a satisfying series of  "clicks" as the nails pass over one another)?

Say "quiet hands" to me ONE firetrucking TIME... I dare you.

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Monday, August 21, 2017

Stop Saying Autism Stole Your Child

I've found a great number of really awesome groups and Facebook pages for autistic people and parents of autistic children online, and I'm sure glad for the support and education I've received from them. In fact, I read back through some of my posts from when we were going through the diagnosis process for Curlytop, and realize how uneducated I was, and what an ableist jerk and self-centered parent I was during that time of diagnosis. In fact, I almost acted like the diagnosis changed who she was, and how I would parent her when, in fact, neither of those were true.

Remember that we lived nine years with Curlytop before we had a diagnosis, and that diagnosis simply gave us confirmation of what we already knew -- that she experiences the world differently, and her neurological biology is different than many other children's.

I'm willing to forgive myself for that ignorance, because now, I know better, so I can do better.

But... I've had to leave a number of parent groups, because the parents within them are still acting like ableist, mourning, hand-wringing, woe-is-me, clueless and callous people. Their children have been autistic their entire lives, and yet they're acting like it's the end of the world.

Just the other day, I had to block posts from a Facebook page purporting to be autism advocates, because they posted something along the lines of, "We all know autistic children have singular interests. Using a gif, comment with what your child is obsessed with!" 

The level of overly-broad brush stroking there was unbelievable, and the grossness of sharing your kid's "weirdness" (and making a fun little game out of it!) just turned my stomach. It wasn't even a page I followed, but a "suggested post" from Facebook.


The ones that really get me frothing at the mouth, though, are the parents who are still wailing that "autism stole my child from me."


Cancer may steal your child from you.
SIDS may steal your child from you.
A car accident may steal your child from you.
A predator may steal your child from you.
A non-custodial parent may steal your child from you.
Hell... A destructive cult may steal your child from you.

But, autism IS your child.

Autism is part of your child's biology, and identity.

Autism is something you'd better learn to LOVE, because that means loving your child.

By blaming and hating autism, you are, by extension, blaming and hating your child.

I get it... parenthood looks different to you than you expected. All those milestones your friends from Lamaze are sharing remind you that your child is different, and will reach those milestones in their own time. Or not.

But if you "mourn" that picture you imagined, you are missing the very real opportunity to love what is right in front of you -- your child, who is exactly who and where they are supposed to be, right this very minute, no matter what milestone they are working toward, or skipping.

I've "mommed" a lot of kids, and I'm here to tell you that parenting is HARD, whether your child is neurotypical, or not. If I "mourned" every time parenting looked differently than I imagined it, I would have been dressed in black for the last quarter of a century. (Okay, I did have my "goth" phase in the early 90s, but who didn't?)

On the real, though... you've been given the amazing gift of a perfectly complex and amazing child. Mourning your child's neurology is like getting a new car, and throwing a spoiled fit because it's the "wrong" color.

If life gave you an awesome car, I'd hope you'd drive it proudly, keep it well-maintained so it can perform its best, and cherish the hell out of it.

Your child is so much more valuable than a car!

If you really wanted a daughter, and your child was born male, would you spend years lamenting,, on social media and in "support" groups how much you're mourning for the daughter you didn't get? Would you let your child witness, for the entirety of their lives, how robbed you felt? That your daughter was "stolen" from you? Would you let them think -- for even a minute -- that you didn't celebrate who your child really is?

That is self-centered AF.

Be proud of your autistic child. Nurture them. Help them grow. Cherish the hell out of them.

And, for the love of God, get out of your mourning, and LIVE life with your child.

Your child hasn't been stolen, but you may be stealing your child's dignity and self-worth.

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Friday, October 7, 2016

When You Learn THIS About ADHD Meds, You'll Be PISSED

Big Pharma has a secret they don't want you to know
about what they're dosing your children with...
So, I have this fierce mama in my world, Mama B. She's a mom who knows her stuff. She's raised or is raising seven kids, including a profoundly disabled adult son, and is an adoptive mama to a child of trauma. She's the kind of mom who causes educators, administrators, medical professionals, and more to quake in their boots when she walks into a meeting, because you can bet the farm she's done her research. 

I say all this because it's important to understand that Mama B is not the type of woman to "go with the flow," or "take it on faith" when it comes to her children's education or health. 

Her young son, "T," was diagnosed with food dye sensitivity in preschool. For those not familiar with the effects of dye sensitivity, it can look like any number of these things:

Red dyes have been associated with aggressive, impulsive behavior in children, tantrums, meltdowns, hitting, kicking, physical aggression, and more. 

Yellow dyes have been linked to insomnia, restlessness, hyperactivity, learning disabilities and behavioral problems. 

Blue and green dyes have been linked to similar problems. 

Naturally, the ever-vigilant Mama B makes sure her son's allergy and sensitivity to dyes is noted with every medical professional he sees. 

When T was diagnosed with ADHD in kindergarten and his medical professional suggested a regimen of daily medications, it wasn't a decision Mama B took lightly. She'd already researched the correlation between dyes and behavioral problems, and since removing dyes from T's diet, she had seen some improvement, but he still struggled with certain behaviors and had difficulty controlling himself, getting and staying organized, concentrating, sleeping, and more. 

In desperation, she and her family decided to give the meds a try.

That was seven years ago. Since then, T has received his daily dosage of ADHD medication, and the problems don't seem to be improving. If anything, they seem to be getting worse. 

I was at Occupational Therapy with my littles today when I began to receive a steady stream of frantic, outraged, angry text messages from Mama B. She was live-texting me from the doctor's office and pharmacy, and relaying to me the shitstorm that was going down, in real time.

See, Mama B found out today that the medication she's been giving to her son -- her dye-sensitive son -- every day for the last seven years CONTAINS RED DYE. 

How is this possible?

How is it that the very medication that is supposed to TREAT symptoms like these:

(This is a list of some ADHD symptoms; not all-inclusive. If this list sounds familiar, you're not imagining things... Check it against the list of food dye sensitivity symptoms, above.)

contains ingredients that can CAUSE the same symptoms?


Guess what... It gets worse. 

T's medication is called Vyvanse. It contains one or more of the following: D&C Red #28, D&C Yellow #10, FD&C Blue #1, FD&C Green #3, and FD&C Red #40.

No problem... Just switch him to another medication, right?

Not so easy. Guess what? They ALL pretty much contain artificial dyes:

STRATTERA: FD&C Blue No. 2, synthetic yellow iron oxide, titanium dioxide, red iron oxide, and edible black ink 

FOCALIN: FD&C Blue No. 1 #5516 aluminum lake (in the 2.5mg tablets); D&C Yellow Lake #10 (in the 5mg tablets)

FOCALIN XR: FD&C Blue #2 (in 5mg, 15mg, 25mg, 35mg, and 40mg doses); FDA/E172 yellow iron oxide (in 10mg, 15mg, 30mg, 35mg, and 40mg doses)
ADDERALLFD&C Blue #1 Aluminum Lake (7.5mg and 10mg doses); FD&C Yellow #6 Aluminum Lake (12.5mg, 15mg, 20mg, and 30mg doses)

ADDERALL XR: FD&C Blue #2 (5mg, 10mg, 15mg); red iron oxide, yellow iron oxide (20mg, 25mg, 30mg)

RITALIND&C Yellow No. 10 (5-mg and 20-mg tablets), FD&C Green No. 3 (10-mg tablets), lactose (some children with milk/lactose intolerance may experience behavioral meltdowns when consuming)

CONCERTA: synthetic iron oxides, titanium dioxide, lactose 

(Note: Iron oxide and titanium oxide, while "natural," have shown suggested links to health problems like asthma, respiratory issues, and even cancer... and what the heck are "synthetic iron oxides?")

Are you as pissed as I am?

I flashed back to the dozens of phone calls I've received from Mama B over the past several years... Nearly in tears, she'd say, "He's so out of control of his emotions. He's completely melting down. It's like he had red dye today... I have no idea where he's getting it."

Imagine how she felt today when she learned he DID have red dye all those days... And every other day. And that SHE was the one giving it to him, because even though his dye sensitivity is noted in every single one of his medical charts, no medical professional ever brought it to her attention, or bothered to research the ingredients before prescribing. 

In fact, it was her pharmacist who uncovered this dirty little secret, after Mama B had repeatedly expressed her concerns over the medication. The discovery resulted in the pharmacist and her co-worker spending a ridiculous amount of time reading tiny print on bottles and computer screens, looking for a substitute that T could take without further health issues. Both of the pharmacy employees were shocked when reading all those ingredients, and even commented that dyes such as those listed are banned in other countries.

Y'all, Big Pharma sure has put one over on us parents. You have to admit, loading up ADHD meds with ingredients that have a documented history of side effects that are nearly identical to ADHD symptoms is borderline genius, if you want to make sure parents and doctors keep reassessing the symptoms, and upping or adjusting dosages when the meds don't give the "desired" results.

But, I'm sure that's not it... Poisoning kids, making them sick with the very thing they're supposed to be treated for... That would be criminal, right? I mean, that would be illegal, right?

But it's not. It's totally legal. 

Wake up, folks... Big Pharma does NOT have your health in mind. It doesn't care about your aging parents. It doesn't care about your children. 

It cares about its profit. That's it, plain and simple. Big Pharma is keeping your disabled child disabled, and they're happily pocketing your money while they do it. 

Sunday, September 11, 2016

Project 2,996: Remember Zandra Cooper Ploger

Photo source
This tribute is respectfully reposted from 2011.

Zandra Cooper Ploger, a 48-year old resident of Annandale, Virginia on September 11, 2001, was a manager at IBM for over 20 years. She was dedicated to her work, loved her two adult daughters, reading, and hosting parties. In fact, she was busy planning a birthday party for her new husband, Robert, who would turn 60 in December.

Zandra and Robert had married on May 12, 2001, but their busy work schedules - Robert was a computer systems analyst for several different companies - prevented the couple from honeymooning right away. When they boarded American Airlines Flight 77, they were headed to finally enjoy that honeymoon, in Hawaii. Zandra was looking forward to not thinking about work for two relaxing weeks, and enjoying a break with her new husband.
Photo source

Friends called her "Z," and she was known for her ability to organize and throw parties which brought together her many loved ones. She was a devoted mother, attending sporting activities and school events for her daughters, and even helping to orchestrate their high school graduation ceremonies. Described as a self-starter, Zandra didn't sit around, waiting for life and opportunities to come to her. Rather, she seized every moment and threw her ambition into exceeding the goals she set for herself, whether it was a work issue, or planning a social event.

Zandra's older daughter, Zena, was born with a heart condition, and Zandra carefully loved and comforted her child through childhood and into adulthood while avidly supporting the American Heart Association. She was the sort of mother who taught her children they could accomplish anything in their lives, and when her younger daughter, Erin, wanted to make a big move, Zandra supported her choice. Even though the distance would be difficult for the two, they maintained a strong bond. In fact, both of Zandra's daughters continued to look to their mother for advice and wisdom, even after they reached adulthood.

Max, Zandra's cat, was a source of joy for her, and by all accounts, she pampered him. Her daughter, Zena, related:
I just remember that when Erin and I were younger, my mom told us we could get a cat. On the trip to pick it up, we were thinking of a name. By the time we got there, she had named it and it was just her cat ever since. Max would cuddle up with her. He slept with her. She would spoon-feed him. He got groomed once a month. One time my husband came to visit and [he] was going to shoo the cat out of the chair and my mom said, ‘Let me get you another chair.’ She just loved this cat, and she showed him a lot of affection.
Photo source

Flight 77 was hijacked by terrorists and crashed into the Pentagon at 09:37EDT, cutting short Zandra and Robert's much-awaited honeymoon.

Zandra leaves behind a legacy of love, friendship, laughter and inspiration to those who knew her. Please remember in your prayers Zandra, Robert, Zena, Erin, and all those whose lives were touched by this beautiful woman.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.

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Project 2,996: Remember Michael Theodoridis

This tribute is respectfully reposted from 9/11/09.

Michael Theodoridis, 32, and his wife, Rahma Salie, 28, were passengers on American Airlines Flight 11 on September 11, 2001. Rahma was seven months pregnant with their first child. The two were looking forward to being parents as they boarded the plane, intending to travel to California to attend a wedding.

Michael was of Greek descent and grew up in Switzerland. He graduated from Boston University and worked as a technical consultant in Cambridge, Massachusetts.

It was difficult to find information about Michael's life, but many online memorial comments helped me to understand the kind of man he was, and how desperately missed he will be:

It's nearly 8 years later and I still vividly remember the day shortly after 9/11 when it went from being a national tragedy to also being a more personal tragedy for me after I found out that Micky and Rahma were on Flight 11. Each summer when my second son has another birthday, I think about Micky's unborn child being the same age as I remember Micky congratulating me and telling me how excited he was about his future as a father.

I pray that they both rest in peace and be granted a place in Heaven. Amen.
- Abdullah Haydar


I never forget your kindness and always positive outlook on life. I had a great time working with/for you at i-cube in Cambridge.

On this 7th anniversary of the attacks, I pray Rahma's, your kid's and your souls are blessed and somewhere special.
- Rob Garcia

Sincere sympathy for the loss of my cousin Michael, rest in peace in God's hand. - John Pondelis

In a business culture full of people whom you forget and whom forget you the instant you part, both Micky and Rhama were anything but forgettable. I still remember Rhama asking me to do an imitation of her accent and it makes me laugh with the memory. Like someone else who commented on this site, it was also Michael's humour, patience and support that kept me going in a very difficult work situation. The world is a much colder place without these two stellar human beings.
- Colin Owens

I worked with Mickey on multiple projects in i-Cube (Stuttgart, Germany; Phoenix, AZ and later in NYC). He was a great friend of mine in addition to being a professional colleague. He was very funny and used to crack me up at difficult times. He worked very hard and managed to keep his sense of humor. He and Rahma were made for each other. It is sad that they could not be together longer. It's so sad! My deepest condolences to his family and friends.
- Jay Natarajan

America Cries
We see your sorrow-
and our hearts cry....
We can not erase your pain
but you do not have to face the anguish alone-for we-
-the American people-
are beside you.
We so desperately want to have the touch that brings you comfort,
the strength that gives you courage,
and the words to lighten your spirits.
And when we are left speechless
may the silence of our nation weave love into your hearts
to ease your sorrow.
May you find healing through our nation's strength as we-
-the American people-
face this difficult time together. Our hearts are with you.
- Teresa Jahn

Please light a candle for Michael, his family and those who loved him. Say a prayer for the father-to-be, husband, and friend who lost his life on September 11, 2001.

Never forget.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.