SCHOOL TESTING, 2023

When my co-author and I committed to writing back-to-school posts as part of our #ActuallyAutistic book outreach with Jessica Kingsley Press/Hachette, I literally could not think of a better back-to-school message to uplift families than one about the glories of schools welcoming and celebrating our children exactly as they are. 

This post was originally meant to apply to the kinds of testing that children undergo during the U.S. IEP (individualized education plan) process, but it has resonated over the years with parents, educators, and students from all over dealing with standardized testing in general.  

And so, without further ado, here is "School Testing," a personal favorite--and my most read post of all time...:  

Dear Persons,

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 70^th 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 88^th 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 61^st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56^th), and “Overall Executive Function” (up by 3, to 4^th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92^nd 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 (5^th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8^th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98^th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99^th percentile) -  even with a 10% 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” (85^th percentile; this score was mitigated by “Teenage Rote Sullenness” [45^th]); “Interest in Girls” (98^th 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” (90^th 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 65^th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58^th percentile), 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 99^th percentile!) in “Being Himself.”

Congratulations,

The Testing People

Love,

Full Spectrum Mama

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

Giveaway ends April 30, 2022.

See the giveaway details at Goodreads.

Enter Giveaway

SITTING STILL

Dear Persons,

We recently went to my daughter’s middle school concert. To my amazement, my 18-year-old son sat through the entire concert without fidgeting, talking, or calling out unexpectedly to kids onstage. 

It was the first such event I’ve ever attended without breaking into a cold sweat from anxiety over his behavior. That includes, over the years, many, many concerts, movies, plays, musicals and other performances during which attendants are expected to be quiet and attentive. 

I’ve been a mostly solo (my partner, Pardner, is a chef/owner of a restaurant) or entirely single parent for most of my children’s lives. With a couple of notable exceptions, I’ve spent every weekend on my own with them for the past twelve years or so. 

It’s been really hard—and REALLY wonderful. 

Early on, I decided I wanted to be a person and do things, and so I’ve been dragging them along to events all these years. 

I hadn’t realized how much G’s restlessness affected me until the other night. 

There are so many little ways in which life can feel daunting. What we usually do is soldier on, right? 

But it’s amazing to consider all the possibilities that open up when you actually feel free to enjoy an event rather than keep most of your energy on someone sitting next to you. 

Sitting through that concert like that was kind of a big deal. 

And it got me to wondering: How much energy have I wasted on worry over these many years? 

I usually explain and justify my worries to myself as solution-seeking behavior. 

But no amount of anxiety could possibly have hastened G’s development into the amazing young man he is now. 

And, to be honest, my worries probably kept my brain too busy to come up with good work-arounds and ideas. 

Plus, ALL ALONG, G has been the happy, kind, funny, fun, loving person he is now. Just a bit more fidgety. (And, truth be told, he wasn’t always all that into much of the stuff I dragged him to…)

Yet I persisted in worrying much of the time about G’s fidgeting and behavior—and not only insofar as it affected him at the time! I also future-catastrophized about potential impacts on his career and how it  might alienate him from the “regular” social world. 

What good did/does all that worrying do? How many other useless ways do I spend my time anxiously mulling over and anticipating possible disastrophes? 

We all struggle with how to be in society. And knowledge around expectations and societal norms comes slowly to some. So do the sheer physical ability to settle down and key mental capacities, including emotional regulation. 

So why do I torture myself unnecessarily? 

I know I’m not the only parent (or guardian, or loved one) of a child with differences (or parent, period) who does this. 

Frankly, I wasn’t much of a worrier, pre-kids. Somehow the little worries of new parenthood mushroomed over the years—sometimes with good reason—into a constant stream of nervousness. 

Looking back, I wish I could’ve enjoyed myself more as a mom, instead of only now realizing all this. 

I’m going to work on finding a way to avoid breaking into a cold sweat when I go places with my children. 

More to the point, I’m going to take a close look at the ways worry has come to pervade so many areas of my life that it’s often depressing and sometimes even debilitating. 

Because I have a hunch that in all cases there’s a similar element of complete futility.

I’m going to try to be gentle with myself in the process: This worry has developed as a result of a lot of hard stuff. 

But I’m also going to be firm, because I’ve had enough!

Worry is my issue and I’m going to own it. 

I cannot “control” my kids anymore now that they’re teenagers. Nor can I make everything right for them!! In fact, I never could entirely do either. 

I can see now that G has moved on. 

Time for me to do the same.

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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PROM NIGHT

Dear Persons,

A few weeks ago, I really messed up.

I’m on my own with my kids all weekend every weekend and sometimes I get impatient or overwhelmed. 

Often, though, we have a really great time together.

Because I’ve always been a solo weekend parent, my children have been forced to accompany me to concerts, museums, and so on. And I’ve watched more kids’ movies than I could count, some of them actually pretty good. 

On this particular Saturday, my son, G, who is a junior in high school, was really getting on my nerves with a couple of exaggerated teenage slob behaviors that are not developmentally typical for an older teen. 

It’s not that the things he does actually bother me per se, it’s that I worry he will do those things out in the wider world—and get shunned for doing so. Or made fun of, or dismissed in ways he won’t even be aware of…

I was having a stressful work day, too (I edit a Sunday political mailing on Saturdays, but I also freelance and, when things are going well, often work weekends). 

But mostly it was just the relentlessness of G’s socially unacceptable behavior that was sending me back to the days when I worried if he’d ever function at all in “the real world.”

So I wasn’t at my best. 

Meanwhile, we were all looking forward to going to a big action movie that night.

Around 5 o’clock, I told G that we had one hour left before we’d have to leave for the movie. I asked him if he could stop being offensive for that period—and warned him that he would not be invited to the movie if he could not. 

As we were putting our shoes on, G was unable to contain himself from doing exactly what I’d asked him not to do.

And I lost it. Visions of his future as an outcast (never mind that he’s the sweetest guy ever) flashed before my eyes as I berated him and sent him to his room.

Now what was I going to do? After all, I don’t usually leave him home alone, and my daughter was dying to go to the film. 

I sat down on the couch with my head bowed.

I tried to breathe deeply while I debated between consistency/follow-through and wanting to get a break/have some dang fun.

I wish this was where I’d come up with a great solution.

But it was time to leave!

Without much clarity, I yelled up to him, “Okay, come on down. I’m not happy about this but Z [daugher] and I really want to go to the movie.”

“I want you to know I’m still REALLY upset with you,” I added. “You only had to keep it together for ONE HOUR! And you couldn’t. So don’t talk to me right now!”

We drove into town in silence, parked, and began to walk to the theater. 

As we approached Main Street, we began to see teenagers in formal dress.

“Hi [G],” some called out to him. 

It was Junior-Senior Prom Night.

My heart sank.

For weeks, G had been trying to get someone to go to prom with him. He’d asked every girl he knew and even posted a request for a date on Instagram. 

A week before, he’d finally given up. And I’d forgotten. But I’m sure he hadn’t. 

In fact all day, as he’d acted out, he was probably thinking about prom and wishing he was going. 

So, yeah—my heart sank.(Yes, I know my heart “breaks” and “sinks” quite a lot. It’s just like that more often when your child  has special needs. Yes, I do know what I’m talking about, as I also have a neurotypical child. My daughter also has special needs—having developed an attachment disorder before she was adopted—but she will have a much easier time being accepted, achieving success, and getting what she wants out of people and life in general. So my heart simply doesn’t break so much with her.) 

Why couldn’t I have been more understanding, more compassionate? Presumed competence on his part and given him the basic respect of assuming he has his own reasons and concerns? 

Why did I focus on a superficial thing when my son's heart is huge—and vulnerable? 

Are there other lessons here for me here about raising an extraordinary child? About supporting rather pushing him than through his challenges? 

In any case, I’ll think twice about making assumptions. And losing my temper.  

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

You are invited to the Inlinkz link party!

Click here to enter

WHAT'S THE BEST KIND OF PARENT?

Dear Persons,

Over the years, I’ve mostly thought it’s been an advantage for my son to have a neurodiverse mom. But the other day, as I bumbled about, I for some reason was hyperaware of how much there is I don’t get, whether because it’s implicit, or because I see things in a black and white way…

Some things I see as unilaterally wrong (it’s hard to give a neutral-ish example without offending anyone), including stuff most people see as excusable under certain circumstances (lying) or even “normal” (eating meat). I don’t actually judge others regarding these things—see below about my self-perception as nowhere near that entitled—it’s just how I myself think and live. 

Other subtleties and social niceties (and meanities!!!!) have only become obvious to me in my forties. 

It wasn't until, oh, about five years ago, that I realized some people have other priorities in their logic besides kindness. 

And I’m so literal that I didn’t even understand that being literal was a thing. 

For a REALLY LONG TIME.

Another thing I’m finally realizing is that there are a lot of things I may not have understood along the way. 

I knew from a very age that there was something different about me and my brain. To be more blunt, I “knew” there was “something wrong with me.” (This was unfortunately an impression that was initially created and then reinforced by those around me. It was, in some ways, a very different era.)

So I developed a lot of coping and passing (as “normal”) mechanisms. As an adult, I definitely pass as “getting” more than I get, and as (I hate this term, because it SO CLEARLY is a neurotypical one!) “high functioning.”

Still, how many people have thought I was a total wack job? How many times have I missed the deeper point of what someone was saying? 

I know I’ve taken people’s words as unkind or marginalizing when they weren’t meant that way. By the same token, I’ve sometimes hung around people who didn’t want me around for way too long, or accepted cruel behavior (toward me) on the basis of my own self-determined inability to “understand what’s really going on.” 

I guess I’m becoming aware that, for my son, having a mom who he can relate to and who understands his neurology definitely has its strong points. But it’s also probably hard for him that I'm “weird” or hurt or confused or clueless a lot of the time. 

Also, he thinks I’m a total loser, so he’s not always pleased to hear about our similarities. 

But there’s more. I found out I’m a Hufflepuff! [Non-Harry Potter fans might want to skip to the next paragraph.] All these years, I was cluelessly convinced I was a Ravenclaw/Gryffindor. In retrospect, I realize I was avoiding taking the sorting test because I was afraid it would reveal I was neither as clever (Ravenclaw) nor as brave (Gryffindor) as I held myself to be. Nope, I’m not. I’m a jolly, kindly, well-meaning, bumbling Hufflepuff. 

So I got to wondering whether it might have been better for my son to have a parent who was more, um, with it. Someone who could better play by the (unspoken) rules and sort of…finesse things in a way that I, in my bull-in-a-china-shop way, cannot. 

How often do I fail him because of my own neurodiversity and cluelessness? Would the best parent for him be someone who’s more savvy? Someone who’s more “successful” by real-world standards (which would include financially)? 

Wouldn’t it be great if he had a mother who understood how to teach him to really be successful—in real-world terms, taking effective, reality-savvy steps—instead of a literal-bumbling-weirdo-Hufflepuff?  

At the same time, I do know I love him exactly as he is and fight for him with all I’ve got. 

And I’m all he’s got, mom wise.

I realize this is a false dichotomy in some ways. Plus, I'm not really addressing the many other parental concerns and diverse ways of parenting, not to mention parental situations, from marital status to economic status, ethnicity to gender identity...

But it still sometimes feels like there's this overarching and fundamental split between those who share differences and those who do not, one I continue to work to mitigate however I can (in our particular area of difference as well as others). 

I imagine parents and loved ones who don’t “get” autism can probably relate from the other direction. Maybe they might not directly, personally understand why someone who’s neurodiverse can’t just “act like other people” or doesn’t perceive the world as they do. 

But they “get” that world—and can navigate it way better than most of us with differences. So they can help their children or loved ones with differences figure out how to get by in a world that’s not designed for them. 

I finally figured out that, in this context, good parenting is about being open to learning and growing, being curious, being accepting. To bring all that together, trying to understand is probably what makes the best parent—along with love, of course. 

So I guess whether you’re a little (or a lot) different and trying to understand people and institutions, or you totally get all that stuff but are trying to understand your kid, or anywhere along that spectrum—you’re good! 

Especially if you’re a Hufflepuff.

Just joshing. EVERYONE who’s lovingly trying to understand wins.  

Love,

Full Spectrum Mama

P.S. If you have a minute, consider answering some questions for a student at Drexel University who is working on a project about how much time parents of children on the spectrum spend on paperwork. Find her survey here. (I am in no way affiliated with this, but was asked to spread the word. Drexel actually has an apparently awesome program for college kids on the spectrum, BTW.)

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

You are invited to the Inlinkz link party!

Click here to enter