OUTSIDE READING: Behavior Plan For Parents of Newly Diagnosed Autistic Children

“Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives. Your distress about an autism diagnosis are most certainly because of these unhealthy messages. Please remember that your behavior in regards to your child’s diagnosis is a choice. Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.”

– A Behavior Plan For Parents of Newly Diagnosed Autistic Children

We Will Get Rid of Bullying

Saw a meme on a friend’s Facebook today. Disagreed strongly with it. Fixed it. My edits are in red and include the words over the actual photo.

The original meme stated: “We will never get rid of bullying / We should teach kids how to stand up for themselves instead of wearing pink ribbons and passing anti bullying laws to create a society of victims.”

I crossed out “never” and the second line. I added: “I stuck up for myself… and got even more damaged in the process. There’s a potentially happy medium… a grey area between demanding administrators get more involved and teaching children about confidence. It’s not so much about teaching self-confidence to those who would be bullied (yes, important)… it’s about teaching compassion & confidence in showing that compassion to those who would be bullies.”

You want to end the society of victims? Stop allowing oppressors to create victims. Treat the cause, not the symptom.

Scott Weiland

As the biological daughter of someone who drank himself to death at the age of 35 (coincidentally, the age I turn in a few months) and was entirely denied his presence because of that addiction… I implore you to read this.

Addiction is a disease which affects more than just the addict themselves… it wholly affects everyone in their life. There are many types of addiction and none of them are positive or productive.

I self-medicated with alcohol (and other things) when I was younger and damaged my body in doing so. I made bad decisions, poor choices. They affected not only me, but those in my life. Once I realized the path I was going down was the same one I vowed not to follow as a kid, I quit self-medicating. This threw me into a tizzy for several years and I couldn’t regulate all too well. I continued to make not-so-great decisions, less-than-spectacular choices.

Therapy helped immensely and Celexa kicked things into a higher gear. I now fully understand why I made those decisions and choices. I endeavor to do better, not just for my sake, but for those around me.

I wish Scott Weiland, someone whose music I have loved for more than two decades, had been able to recognize the wisdom in changing his path for the sake of his children. As a fan, I would have gladly given up the last twenty-plus years of music, if those children could have their father present and healthy. Such a waste.

Related Reading – Scott Weiland’s Family: “Don’t Glorify This Tragedy”

Meltdown vs. Tantrum

PLEASE learn the difference between a meltdown and a tantrum. They may appear the same, but are VERY different…

Tantrums are willful obstinate behavior. Like when a kid throws themselves on the ground because Daddy won’t buy them the $200 Lego set. Or when cookies are denied in the mall food court and the kid starts an extended screamfest until appeased. Tantrums generally accompany genuine entitlement issues.

Meltdowns occur when someone can no longer process sensory input/output. It’s like a computer hitting the notorious Blue Screen of Death when Windows locks up and can’t further process data. The individual also needs to reboot, by being removed from the situation and allowed to decompress.

Either stop and offer help or continue on with your day. Don’t gawk, don’t judge, don’t be a jerk.

Something I’ve written to help friends with my personal meltdown situations:

While rare in public for me, if you DO ever see me having a meltdown (trust me, you’ll know)… please offer me water and ask if you can walk me to a quiet(er), more isolated location (if possible). I will likely be unable to talk, but I can generally nod or shake my head (or use minimal sign language, depending on how far into the meltdown I am). Please don’t overwhelm me with questions. I may hand you my phone and ask you to call my mom for me, if really bad. I may use my phone to participate in an activity which can help center my thought processing. I’m not ignoring you… just rebooting myself.

An an aside, if you ever see me on my phone or computer, PLEASE DO NOT COME UP BEHIND ME OR TOUCH ME WITHOUT WARNING. This is enough to send me into panic mode and deplete my spoons for the entire day. I do not do well with being surprised, to say the least. This also goes for trying to tap my phone screen/keyboard or f–cking around in that manner. It may seem harmless and/or funny to you, but for me… that sends me into a terror spiral. It will never be okay. Please… just don’t. So yeah, I would appreciate if you would say my name before approaching me, to get my attention, and then approach from the front or side. Thanks.

OUTSIDE READING: Is Everyone “a Little Autistic”?

“If everyone were a little bit autistic, Salvation Army bell ringers would be illegal. If everyone were a little bit autistic, nothing ever would have strobe lights. Ever. Fluorescent lights, sirens, shirt tags, sock seams — these wouldn’t exist. There would be a strong social taboo against dragging a chair across the floor and making that horrible scraping sound with it. Perfume and cologne would be outlawed as hazardous substances and every school and workplace would have a quiet zone for recuperation. How we handled turn-taking would not involve long lines of people standing scrunched up close to each other. In short, if everybody were a little autistic, our whole society would look a great deal different than it does.”

– Is Everyone “a Little Autistic”?

Farewell to Portland & Moya

On an airplane, headed back home from TASH. Thank goodness for overpriced, ridiculously slow wifi on planes!

So immensely grateful I was able to meet so many wonder activists and advocates, some whom I have had the pleasure of being able to communicate with online regularly and some of whom I was introduced to for the first time this week.

pacla_tashThankful for everyone who stopped by the Parenting Autistic Children with Love & Acceptance poster presentation on Wednesday afternoon/evening (especially those who enthusiastically grabbed buttons!) and the Autism Women’s Network talk this morning on Creating Supportive & Inclusive Spaces For Autistic Women. It is an honor to be able to work with Lei Wiley-Mydske (Ed Wiley Autism Acceptance Lending Library), Kassiane Alexandra S. (Radical Neurodivergence Speaking), Morénike Onaiwu, and Leah Kelley (30 Days of Autism: Leah Kelley)!

I spent most of yesterday being non-verbal and hiding in my Airbnb, regaining spoons, so that I would be able to go out with friends who reside in Portland and were not attending TASH.

Something I wasn’t sure I wanted to write about and I’m still not really ready to get too much into (we’ll see how much I end up typing)… on Friday, I had to very unexpectedly euthanize my therapy/service cat, Moya. Many of you know what Moya meant (and still means) to me; he was like my kid for the last nine years and we were nearly inseparable. Losing him has taken an enormous toll on me and I wasn’t sure I could even attend TASH, let alone participate in two presentations at the conference.

Moya was diagnosed with lymphoma in September, when he had a large tumor removed from his lower intestine/colon. He was subsequently put on steroids and we had an expectation of him being around at least a few more months to maybe a year or two (if we were lucky).

Unfortunately, a routine procedure (unrelated to his lymphoma) performed last week by an incompetent “emergency” veterinarian – which should have taken 15-20 minutes but ended up taking 2+ hours and required a specialist to come in and try to clean up the hack’s mess in a secondary surgery immediately following the first procedure – did so much damage to him, it was not prudent to put Moya through the highly invasive surgery required to reconstruct the area damaged and the recovery process, which would have made him miserable & given him a poor quality of life for whatever the remainder of his life may have been.

I was looking forward to getting Moya home Friday night, after a rollercoaster of emotions last week with the procedure going awry and then allegedly being “fixed” (but not really, as I now know), so that we could cuddle for the weekend and I could calm down before TASH. Unfortunately, I spent Friday night saying goodbye to my Best Cat (all cats are Best Cats, it’s not a competition… and Moya was MY Best Cat) and then having the worst meltdown I’ve had in years.

The idea of arriving home this afternoon and not seeing a huge ball of stripey orange & white fur moyawaiting for me at the front door of my house is causing me so much stress. Writing this is helping, but there are tears in my eyes. I do not know how I will be able to function properly without Moya in my life.

Moya was the one constant I could always count on. He had gotten me through some very taxing situations over the course of his life. Sleeping on me almost every night, so that I could actually get some sleep (I have had issues with insomnia my entire life). Hopping on my lap before any meltdown or anxiety issue, because he knew when those were about to occur before I did, most of the time. Allowing me to hug him for as long as I needed to, whenever I needed to, without complaining… and always hugged me back (yes, he would wrap his front paws around my neck or my waist and squeeze). Permitting me to flip his ears between my fingers whenever I needed to stim. Giving me nose nudges and kisses regularly, to remind me how bonded we were and that I had unconditional love from someone at all times.

Losing him is like losing a sizable portion of my heart. I am the very definition of heartbroken.

So, if you met me this week, I apologize for not being completely in the moment. My mind and heart were definitely elsewhere. I pushed myself to go and I’m so glad I did.

Now, it’s time for me to figure out how to live in a Moya-less world and adjust to that reality.

(NOTE: While I appreciate sympathy/empathy, I kindly ask that none be expressed in comments to this post. While I am okay to write about Moya in this moment, I cannot predict how I will feel in a couple minutes, hours, or days and am not sure I can process comment notifications further reminding me of his absence.

If you want to express good wishes on Moya’s behalf, I ask you to please encourage those you know to adopt a shelter animal and give them a forever home. He was a rescued cat and gave me a love that will remain unmatched for the rest of my life. I wish everyone could get to experience that and I encourage everyone to give themselves the chance to do so and also in doing so… save a life. Thank you.)

The Cake Debacle

By now, a good portion of Facebook (and the internet) has probably seen the story about the autistic grocery store employee (not trained to decorate cakes) who decorated a cake for a customer, the customer who “graciously” accepted & paid for the less-than-professionally decorated cake, and then promptly went home to photograph the cake and accept kudos from all over the internet for being so gracious and compassionate.

Eff that.

It’s been really annoying me to keep seeing people posting it, praising both the non-autistic employees for being kind to the co-worker and the customer for not making a big deal over the cake (except… she is). This story is clear inspiration porn.

Why? Simple.

1. The employee’s diagnosis is nobody’s business if she doesn’t willingly reveal it herself. Her privacy has been compromised. HIPAA laws exist for a reason… to protect the privacy of the patient. It was not the cashier’s place to inform the customer of the employee being autistic. Don’t excuse this privacy violation under the guise of acceptance. It’s a violation of privacy. Period.

2. The person seeming to be getting the most kudos over this is the woman who bought the cake for being kind enough to overlook the design flaws. A lot of parents of autistic kids are sharing it, saying they hope people are as accepting of their kids when they’re older… but guess what? This isn’t acceptance, this is stating that you’re willing to forgive someone for their flaws BECAUSE they’re autistic, but if they weren’t autistic, you’d be pissed as hell. That doesn’t fly with me. Acceptance means accepting the person INCLUSIVE of their being autistic, not because or despite their being autistic.

I’ve been under a lot of stress over the last several days, which usually causes me to shut down completely and be entirely non-verbal. I have been fighting that quite a bit, so I could be in Portland for TASH. I am still mostly non-verbal right now, but I’m here and I’m trying. My mom texted me last night that she’s proud of me. THAT is okay. This IS something to be proud of for trying and I’m proud of myself, too. But does my mom blast it all over the internet in a public post for attention? No. Because it’s inappropriate for her pride in me facing adversity to be utilized to garner attention or to be exploited without my knowledge to teach a lesson about compassion… or whatever people want to imagine is the end game of the cake customer.

This situation and those like it are absolutely disgusting. So knock it off and tell your friends the same, please.

For good measure, please check out Stella Young’s TED talk about inspiration porn.

TASH-bound!

Currently in the air above Yosemite National Park, flying toward Portland.

If you’re attending TASH this week, be sure to check out the Parenting Autistic Children with Love & Acceptance poster presentation tomorrow, between and 4:30PM & 7:00PM, in Salon F …and then the Autism Women’s Network breakout session “Creating Supportive & Inclusive Spaces For Autistic Women” from 9:20AM until 10:10AM, at Sunstone.

If you do stop by either (or both!) of these, please say hi. I’m pretty easy to spot (brightly colored pigtails, glasses, freckles).

How is This Awareness?

Someone please explain to me exactly what this teaches you about autism and how to better assist autistic children… or adults for that matter?

I’ll wait…

Oh… nothing?

This is why I despise awareness campaigns. Found this on some page called Firefighters vs Autism. They have an entire calendar like this. Half-naked fit guys wearing puzzle-adorned helmets.

What exactly are they versus, with regard to autism? Shouldn’t they be firefighters in support of autistic individuals? I mean… they ARE first responders, after all. They’re there to support and render assistance, correct? Why are they against us? And what’s with the goofy puzzle pieces? Can we please stop that already?

If you want to make people AWARE… teach them something. Educate them. Don’t strip down and sell calendars full of eye candy (well, not for me… I like my guys chubby and bearded, thanks) just to raise money for your organization, which is disrespectfully named in the first place.

Ugh.

OUTSIDE READING: Is a ‘Spectrum’ the Best Way to Talk About Autism?

This is a REALLY, REALLY good read on why I tend to lash out at people who insist on using the “spectrum” as a linear way to classify autistic people. Nope. Doesn’t work that way. And this does a pretty solid job explaining why.

“If I tell people that I have two autistic brothers, I often get asked some variation of the same question: ‘Where are they on the spectrum?’ There are better and worse ways that people ask. ‘How bad are they?’ is a worse way. So is any form of asking whether they’re ‘high-functioning or low-functioning.’

‘How much support do they need?’ is much better. But no matter how the question is asked, it is always really hard to answer. My brothers’ behaviors have changed drastically over time. I don’t feel like I know enough other autistic people to compare them on a line. And I don’t even know what that line would measure.”

– Is a ‘Spectrum’ the Best Way to Talk About Autism?