Showing posts with label neurodivergent. Show all posts
Showing posts with label neurodivergent. Show all posts

Wednesday, January 19, 2022

BOOOOOOOOOOK!

Dear Persons,

 

I hope this finds you cozy and well despite these challenging times.


As Madeline, Judy, Celeste, and I convened for the first time 10 years ago (this month!) to discuss our initial writing group submissions, we could not have imagined what we would all go through in the following decade—or the world we would live in today.

 

Nor would I have dared to dream that the wee blog I began that day would grow to have hundreds of thousands of readers interested in neurodiversity...and ultimately result in a book collaboration that means the world to me. 

 

I'm over the moon to let you know that my first book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy: Step-by-Step Advice on How to Ally and Speak Up with Autistic People and the Autism Community, is available for pre-order here

 

Please stay tuned for more release information and reach out (my email is jineffable@gmail.com) if you'd like to help spread this book's message. We believe this text will serve Autistic people themselves, as well as families, educators, therapists, caregivers, friends, partners, employers, and anyone else who'd like to know more about Autistic perspectives.

 

In addition, we've begun work on our second book, The #ActuallyAutistic Guide to Teen and Young Adult Advocacy and Activism: Step-by-Step Advice for Autistic Youth and Those Who Care About Them. 

 

We're asking all interested Autistic teens and young adults to fill out our survey. Here are the links if you fit this demographic or know anybody who does (please only fill out one version):

 

SHORT survey: https://forms.gle/qKRmuAVsCCwEAF4A9

LONG survey, for people who really like writing: https://forms.gle/FYhmxMmvoYWpcX1e7

 

Thank you so much for being a part of this journey to spread inclusion and awareness!


Love,

Full Spectrum Mama

Goodreads Book Giveaway

The #ActuallyAutistic Guide to Advocacy by Jenna Gensic

The #ActuallyAutistic Guide to Advocacy

by Jenna Gensic

Giveaway ends April 30, 2022.

See the giveaway details at Goodreads.

Enter Giveaway

Tuesday, June 16, 2020

EQUALITY, UNITY, AND JUSTICE

For George Floyd, Breonna Taylor, Ahmaud Arbery, and their fellow human beings unjustly killed for being Black



I.


I’m about as white-skinned as it gets. 


But when I lost my still-alive white father to mental illness, a Black man—a former mentor and teacher—stepped up to fill that thankless role without even being asked. 



There are very few people of color in my current hometown.


But my daughter’s best friend all through grade school was one of them, and her family became my adopted family here. 



I’m a United States citizen.


But the first year and most formative times in my life were spent in the Darien jungle in Panama. There, my father and I were usually the only white people for hundreds of miles, amidst indigenous people, the descendants of escaped African slaves, (mostly) Spanish colonizers, and Chinese canal laborers, and combinations thereof.



My daughter is a U.S. citizen. 


But she was born in and adopted from China and is genetically of entirely Chinese descent.



Four rational reasons why I march, why I vote for equality, and why I always do my best to do right by all people of color.


II. 


My son and I are neurodivergent.


Just as a Black person may be in danger (or be bullied, or passed over for a job, and on and on) simply for “being in a black body,” my white-bodied son faces discrimination and danger for having an autistic mind. (I “pass” a little more easily, but have also dealt with plenty of neurodiversity-related issues over my lifetime!) 


Like most Black parents, many parents of autistic children teach their kids how to behave if they encounter the police. “Acting weird” or “different” is yet another way to “get yourself in trouble”—or worse. 


When we—whoever we are, whatever our skin color, etc.—say “Black lives matter,” we are in fact saying “All lives matter, because all people should be equal”; 

and we are also saying “We understand that, historically and in the present, people living in so-called black bodies have been, and are being, treated with extraordinary violence and injustice, as if they don’t matter, and we want everybody to know that black lives are of great and necessary value in the tapestry of humanity and we ally with Black people.”


If you’re “foreign,” gay, Autistic, brown, yellow, Black … in short, if you’re colored or shaped or oriented or identify differently—if (in the United States) you’re different from the dominant/“normal” white majority in any way, really—you know what it feels like to have your body and whole being seen in ways that categorize you, that relegate your existence and actions to a lesser status on the basis of a single trait. 


Another rational reason why I advocate and ally with ALL marginalized peoples.


III.


But rational reasons, even very convincing ones, aren’t the point. 


Dear persons, why must there be a reason behind understanding that we are all human beings?


As such, do we not all have hearts to care for our fellow beings? 


I once read about a U.S. senator discussing how he was grateful for the hundreds of thousands of dollars worth of healthcare his sick wife received through health insurance. He spoke of how that huge amount of money would have been a stretch for him without insurance, and how he now understands why people need insurance


Do the math, senator. For most people, hundreds of dollars, even dollars, in out-of-pocket health expenses would be a stretch. I suppose that’s a rational reason behind healthcare coverage.


But it’s also a heart-centered reason behind caring: Do those less-affluent people care any less about their wives, children, partners, parents—or their own and loved ones’ health and access to healthcare?


Why would it take a direct experience of the need for healthcare to grasp that everyone needs healthcare—and that basic human decency demands that they get it?


Likewise, why would you have to know a [fill in the blank here] person intimately to include them in your species?


Even if we don’t have the empathetic capacity to make such a heartfelt leap of understanding, doesn’t logical reasoning tell us we are all fundamentally similar in the most basic ways? 


For instance, I think we can agree that we all want and need the same things: 

  • enough food to eat 
  • a safe home to live in
  • to be loved and to love
  • enough resources to access what we need (and, we hope, a bit more “for special”)
  • opportunities for meaningful employment and/or other activities
  • people with whom we can connect on what we care about
  • to be known as a worthwhile being and treated with respect


I might have missed one or two items (and, of course, some specifics for particular individuals), but it seems to me these needs are 

  1. widely if not universally shared,
  2. reasonable, and, more importantly, 
  3. achievable…if we work together


Let’s try this handy test:

Are you human?

Do you believe that other humans are also human?

Do you believe on some level that some humans, say, women, trans people, Black people, Autistic people, and/or members of some other subgroup, are somehow less human than other humans of another group (probably your group)? 

OR do you believe that all humans in general* have equal/shared humanity and worth?

If so, whether you came to this conclusion with your heart or mind (or both), do you believe it’s worthwhile, even imperative, to help ensure that all humans have access to the above basics? 

Do you accept that some of us have certain areas of privilege (such as being white, educated, verbal, male, financially secure, and so on)?

Can we use whatever resources, privilege(s), and/or power we’ve got to advocate for equality? 


Dear readers, I get it: It may feel like there isn’t much you can do in this isolating global crisis. You may feel angry, sad, tired, hopeless. Many of us have all we can handle with work and family alone. 


But the world is desperately in need of healing right now, and ripe for CHANGE in ways we may never again see. It’s an amazing opportunity! 


Know that every small shift toward inclusion, every friendly and/or courageous exchange between mutually human beings, can have huge reverberations. That means any little steps you can take will make the world better for all of us. 


Thanks and love,

Full Spectrum Mama




* Of course, some individuals commit acts that diminish their own and others’ humanity. I’m simply arguing against classifying any subgroup of humanity as less-than based on a single trait. 

Tuesday, April 12, 2016

SCHOOL TESTING


This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (Individualized Education Plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results – lower than expected, very uneven - are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:


Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56th), and “Overall Executive Function” (up by 3, to 4th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99th percentile) -  even with a 10 percent margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85th percentile; this score was mitigated by “Teenage Rote Sullenness” [45th]); “Interest in Girls” (98th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58th %ile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99th %ile!) in “Being Himself.”

Congratulations,
The Testing People



Love,
Full Spectrum Mama





Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!