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

GAMING FOR PARENTS

Dear Persons,

Let's play a game, and in that game the rule is, everything I say is annoying and wrong. 

This game is called…The Teenager Game. 

Here’s a brief round from just the other morning:

FSAM* [cheerful and encouraging]: G,  if you have to stay the whole period for your test but are done,  why not use that time as a chance to bring up your grades? You know, work longer on the test after giving your brain a little break. Or ask your teacher what other work you can do! 

G [ultra-sullen/condescending]:…Do you have to talk to me? 

FSAM [caring, thoughtful, respectful]: Z, The writing program ends in April, right? How is your writing going?  

Z [side eye]: We will send it in in April. 

FSAM [confused and/or correct]: Well…doesn’t that mean it’s over?

Z: [shrug].

The Teenager Game is pretty exhausting. Like any parent with teens, I often wonder how to get through to them. Almost everything I say to them is, quite typically, met with disgust and dismissal. 

By the way, how did they get this “grownup,” anyway? 

When I was pregnant and had begun the long process of worry that is a big part of parenthood, an experienced mother of three grown boys told me something that really helped me through my first few years as a parent: “The odds are with them.” 

It was such a simple phrase, but it truly carried me through some rough moments. One kid would get croup and I’d be up at 3am holding him or her, listening to what sounded like a death rattle in a steamy bathroom and I’d be scared out of my wits. Then  I’d think, “Jill told me the odds are with them! How many babies have croup right now? Lots! S/he’s gonna live!” With each wee bit of independence or separation, too, I would start to spiral. Then I would remember: “The odds are with them!” It was such a comfort. 

But there’s a catch now. The things is, with autistic kids — my son, G, is on the spectrum — the odds aren't with them. Without getting into the precise (very daunting) statistics, people on the spectrum are significantly less likely to achieve all sorts of things that typical people mostly take for granted, like independence, employment, academic accomplishments, romantic relationships, parenthood, health. And kids with behavioral and emotional issues, like those my daughter has struggled with due to her attachment disorder, do so much better in the long term when those issues are addressed in their younger years. 

So in this “game” of teenage disaffection, the stakes feel higher in the Full Spectrum household, as they would in any household with differences and disabilities. I have to get through to my teens, since the things most people take for granted will eventually happen for their kids - independence, mental health - are not a given. I have to tread a fine line between accepting that my children are beastly teens, while remaining alert for any signs of impending disastrophes. At the same time, I have to not have a nervous breakdown?! 

So how do we improve the odds? Ideally, while not having nervous breakdowns, not breaking the kids, without the kids breaking themselves, and while presuming competence for all, we will also be able to encourage them and help them flourish as the unique, irreplaceable, precious beings they are. 

And this isn't a zero-sum game. The more our loved ones with differences are uplifted, the more they succeed, the more progress, acceptance, and awareness for all, right? After all, that’s the whole point of this here blog. 

Stay tuned/bear with me as I approach this transition phase, along with my Meeting Friend, and a few other loving yet terrified parents of teens. I will share input from parents and guardians and individuals who have been there as well. 

Love,

Full Spectrum Mama

* Full Spectrum ANNOYING Mama

P.S. FSM has received some good press and stuff lately, and readership continues to climb (at 175,000+ as I write!). I was interviewed, about, among other things, activism, advocacy, and parenting a neurodiverse child as a neurodiverse parent here, at this great site that recommends asking real live autistic people about how they feel and what they want in their lives. Also, I am so honored and excited to have been named a "Top Autism Blog for 2018" - Oooh, I just have to share: "Full Spectrum Mama writes in a refreshingly honest style with beautiful rainbow illustrations that accompany her posts. It’s one of the most unique autism blogs on our list."

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny 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!

An InLinkz Link-up

HEY, YOU!

For Ozzie

Hey, you - you, who just got a label after years of searching for answers about yourself.

Hey, you - whose child or loved one just got a diagnosis.

Hey, you - who just gave birth to a child with a difference and/or disability.

Hey, you - who suddenly feel like it’s all too much, who don’t have it in you to cheerfully be different today. 

Are you spiraling? Of course you are. Do you feel like your life is being eclipsed? I’ll bet you do. 

Can you breathe? Just stop, take a moment - one moment! - and breathe. Between you and me and the fencepost, let’s face it: even one moment can be a lot to find what with all this diagnosis/labeling/disability/difference navigation business! But I am here to tell you that it is possible…Just the one. Try just that one moment of pausing to breathe.

(I was a Yoga teacher for a long time and one thing I learned was to teach only what you yourself practice. All that self-care stuff sounds great to me but…really? Who has the time and/or money? I know, though, that if I can find one moment to breathe you can too!)

Here’s the thing: there’s nothing wrong with you/your child/your loved one. It’s no one’s “fault.” Yes, the world wasn’t really designed for some of us - and there IS something wrong with people who discriminate, IMHO. But you (your child/loved one)? Perfectly imperfect just as you/he/she/they are. 

Sure, in time you/your child/loved one may benefit from certain interventions - whether medical (surgery, medication…), therapeutic (physical, psychiatric…), educational (IEP, tutoring…), etc. - but so much of that is designed to help us “fit in” to the world as it is, not necessarily as we are. No judgment!  Every individual and family must make their own choices! However, please never feel that these things “fix” you/your child/loved one; instead, they help us to function better in a certain, particular type of context. 

Here’s an example: students with ADHD can thrive without any medication or behavioral finagling in a variety of learning environments, many nature-based, but typically not including a standard classroom environment. Yet the standard classroom environment is what they usually encounter, which may lead to any number of challenges, including issues with self-esteem…

One of my best college friends and I were a tiny bit tipsy-ish one night and thought it would be really funny to call out to passersby with the hilarious words, “Hey, you with the internal organs!”  (Good come on, right?) 

This particular friend has had her challenges in her parenting journey, I can assure you, but her humor and accepting attitude have served her well.

Because hey, by the way, even if you DON’T have internal organs, those of us who have suffered for our differences and/or those of our loved ones tend to know and live true inclusion and thus we respect, accept, and honor you with no judgment regarding your internal organ status.

See, we’re all in this together - something I think those of us who’ve had to fight for our own inclusion or that of our loved ones realize early on. The fact that not all people see things this way is sad both for us and for those who don’t see this truth. 

So hey, you, you reading this post - either with your eyes or another organ, through being read to, or an assistive device - you are stronger than you know. And you are not alone. Wait till you meet some of these characters who get it, who’ve been there. 

Deep breath in, deep breath out...Welcome!

Love,

Full Spectrum Mama

P.S. The Bloggers in this Blog Hop might be a good place to start: 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny 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!

An InLinkz Link-up

SCHOOL TESTING

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 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” (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 %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 99^th %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!

An InLinkz Link-up

FOURTH ANNIVERSARY LISTS I: ADVOCACY

Dear Persons,

Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I

1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;

2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and

3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**

            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:

Links:

http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2014/01/second-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2015/01/third-anniversary-lists-i-advocacy.html

You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:

1. INSIST!

2. PERSIST!

3. EXIST!

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?

Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:

I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!

...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you can...you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,

Full Spectrum Mama

* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??

**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...