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

First Anniversary Lists II: Attachment Disorders

An attachment disorder can be very isolating. Whether your experience is as a parent, as someone with an attachment disorder yourself, or in dealing with someone close to you, knowing others are in the same boat can help you feel less alone. Count us in on your AD boat, friend, and read on!

Here are some things I wish I had done and/or known earlier about Attachment Disorders:

Attachment Disorders

1. Get professional help. Healing attachment disorders is tricky and time-consuming and entails very specific directives rarely (if ever) arrived at through trial and error.

Most loving, engaged parents or caregivers will never come to therapeutic parenting by their own logic. Parenting an attachment disordered child can be counterintuitive and require you to do things that defy your culture and instincts in order to help your child heal. Caring closely/intimately for any person with this potentially debilitating disorder will entail similar adaptations.

2. Several readers came to FSM casually, only to suspect -- having learned more herein -- that they or a loved one might have an attachment disorder. While I am not a neurologist or psychiatrist (big disclaimer!), I am a pragmatist. I do hold that in some cases if a model of care works for you, professional diagnosis may be a secondary concern (disclaimer: of course, see #1!). 

3. Whether you are dealing with a child or an adult, a loved one or an unloved one, or yourself, know that disordered actions – however manipulative, cunning, cruel, sneaky, dishonest, controlling or aggressive -- come from deep pain and fear. If you are truly experiencing an attachment disorder, you will need this compassion in times to come.

4. In an attachment disordered context, therapeutic parenting means setting strong boundaries and following through on every. single. goshdang little thing in order to build feelings of safety and trust.  

We were able to see instant positive results in many areas when we shifted to this form of care. Tantrums, for example, have been a great field of progress for us (so long as I handle them as advised; every once in awhile I am all, “&&%$# it!” and then things can get ugly: once the tantrum train is in motion it is VERY hard to stop). Other aspects of our lives have progressed much more gradually, and some have seemingly not changed at all.

Take note of emotional and practical steps forward and remember them during difficult moments and times when being a boundary vigilante has you bushed.

5. That said, you will get tired. It will sometimes be hard to see your child’s (or another person’s, or your own)  heart through the oft-constant challenges and maneuvers. The more attached an attachment disordered person gets, the more they push – because they care, and are scared about that caring.

One thing that works for us is for me to get close to Z and really look at her, and into her eyes. Pausing that way, and letting the love rise to the surface – though not something I am always willing or able to do – almost always reminds me of the truth of our relationship. It reminds me that we should none of us be defined only by the manifestations of our pain.

Humor works, too. Actually being funny in those very special moments is Not Bloody Likely. So what about the absurd? “Oh yeah? You are going to tell me that you did not take this rotten food item that is hidden in your pillowcase? Well, I am going to tell you that I am going to Get in that SPACESHIP out there and fly to a planet where everybody wears pillowcases full of rotten food at all times. And if you Don’t wear your rottenfoodpillow you are very WEIRD. So I am out of here.”

Give yourself a break, and another chance. Same for others.

6. Get support. Find others who are faced with this unique challenge and lean on them for advice, mutual comfort, and commiseration, as well as for the sharing of hopes and progress.

You are not alone. Probably, you are doing your best.  Here’s to hope, love, humor, strength, patience and second (and third…) chances…

Next week: Anniversary List III.

Love,

Full Spectrum Mama

Tasteless Autism/Immunization Joke

Did you hear the one about the mother who suspected she was autistic and so did not immunize her son so he wouldn’t “get autistic” too…and then he turned out to have autism* despite not being immunized?

That one was about my son and me!

I mention this partly because life cracks me up and partly because my dear friend Rachel, a passionate and loving advocate around autism (here are just a few of her projects: http://www.autismandempathy.com/ and http://www.journeyswithautism.com/) has sometimes been vilified in “the autism community” for being pro-vaccination. It seems difference (here, of opinion) is sometimes unacceptable, even in a community of people who have differences from the neurotypical norm, or have family members with such differences…

Concerns around immunization have been a force since immunization programs began; likewise, immunization has had an enormous body of supporters and has unquestionably saved many, many lives. Although I was trained in graduate school to read statistics – even quite complex sets – I cannot say from looking at the numbers that I know with anywhere near 100% certainty what the right choice is for anyone else in the autism/immunization debate. 

Nor does our joke-embodied story prove anything beyond its own scope.

But I do know for sure that being intolerant of others’ opinions is unjust.

I also know that a good laugh is often the answer, even if it doesn’t solve the exact question in question.

Love,

Full Spectrum Mama

* …and to be the most wonderful son in the whole wide world, according to his Mama, Just As He Is.

Tools

…In which I expound, dear readers, upon a small spectrum of handy-to-la famiglia FSM tools that might be useful and/or laughable in your rainbows.

The “My Bad”

We all aspire to the wielding of copious quantities of positive tools like respect, patience, unconditional love and consistency.

My favorite progressive tool, though, is more negative.

My mother’s generation – whether traditional or hippie-mama – often felt pressure to act as if mothering felt happy and easy at all times, as if motherhood was totally fulfilling and came naturally to all mothers. Parents, especially fathers, were deemed omnipotent and all-knowing.

As our culture has become – however incrementally – more open and less sexist, we have gained some additional tools at our disposal. We are now free to admit to each other that parenting is sometimes hard, and often baffling, and that – even as we fiercely, fully love them Every Second -- we sometimes don’t entirely like our kids at a given moment.

It may be even more important that we are able to admit to our children (friends, family, partners…) that we ourselves are human. So, I celebrate the following three phrases:

“I don’t know.”
“I messed up.”
“I ‘m sorry.”

The use of these phrases demonstrates that parents (friends, family, partners…) are fallible human beings who will try to figure stuff out and do better next time. Just like kids can be – if shown the possibility.

The “My Bad” is liberating, but by no means a license to ill. At its best, though, it offers possibilities of redemption, learning, healing.

The “Locked” Door

Among other things, Z’s agenda includes using the stovetop and oven at 2am. Because of this, I have had to confine her to her room until I officially get her up in the morning. This involves keeping a chamber pot in her room and my “locking”[closing] the door every night after I put her to bed. Somewhat paradoxically for Miss Independence – but well within guidelines set by the aforementioned therapist -- this has been a very comforting process for Z herself.

The first (initially) unknown-to-me reader of FSM -- and someone I think of as a real live guardian angel -- has degrees in Education of Young Children, Child Assessment and Development, and Psychiatric Social Work (with specialty in the field of children and families).  She also has decades of experience working with children. She keeps me on track and within the bounds of my knowledge while still tolerating, even celebrating, my flights of fancy. Any errors, of course, are all mine.

She recently asked me,  “How do you as a mother create a safe home for Z while still feeling your home is as you want it to be?” My answer was…I don’t. I used to wear a lot of jewelry, for example, until some of my most precious pieces disappeared. Some did reappear, only in different and unsalvageable forms.  Now my jewelry is so hidden away that just getting to it is way too much trouble for a busy mama.

Some other nighttime concerns, besides stove on-house fire-gas explosion and jewelry-ruined-gone include:

food-hoarded-infestations-grody stuff-smears-rot-botulism

lotions/creams/polishes-ingested-poisoning thereby

pets-tied up-enslaved

Z has her own jewelry and creams and an array of dolls and stuffies, but they are never quite enough. Her night machinations made this very clear. Admittedly, with her high level of competence we might teach her how to use the stove, etc. in the not-so-distant future.  Until then, we say that Z “isn’t ready to get up on her own.” We try to meet her where she is on the developmental spectrum, protecting and nurturing the baby inside, while allowing for her exceptionally high acumen on mental and physical spectra by essentially baby-proofing the house for a really, really advanced baby.

Oppressing Z was a concern, but her “locked” door liberated her from her compulsion to do verboten “projects” in the night and allowed her to sleep soundly, thereby enabling her to not only feel better but to feel better about herself.

Humor

Also from my children’s therapist-angel reader came the suggestion to use humor. She reasoned that with all the progress Z had been making I might begin to use wit in our interactions. Instead of sticking firm and strong to my “put the dish in the sink” order, for instance, I might -- according to therapist-angel -- say, ”Put the dish on the floor.” Essentially, I should continue to contain Z's actions -- but with a light touch.

Yeah, I am not ready for that yet. The therapist Pardner and I go to who specializes in attachment disorders suggested the same thing. He thought, for example, that when Z looks at one of her adoring aunties and haughtily points to her plate to indicate that more food must be provided I should say “Oh…is that a plate?” I told him,  “Please. Just tell me one thing to say for all situations. Funny is too confusing. In those moments I can’t remember more than that.” Someday I do very much want to be funny. For now, I aim for functional.

Ripping Bag

Z likes to rip. She likes to rip Everything. She rips paper into tiny strips, all of a size. She rips clothing -- seam from seam, or expanding upon a pinhole or snag.  She rips horns off beloved childhood unicorns saved especially for my some-day daughter. (I’m not bitter about that one.)

One day, after yet another ripping disastrophe, it occurred to me to fill a bag with stuff that Z not only could but Should rip. It was a great success and has substantially reduced free-form ripping.

Feel free to riff on this: what about a smashing bag? A coloring-on box? A food-hoarding bunker?

One Battle a Day

G has the typical aspergian penchant for obsession. Pokemon has been a focus for almost six years.  In order to make time for other activities and foci, such as eating and sleeping, we have devised a system in which we have one extended, all-out Pokemon battle a day, after which we have some time for discussion. A potential additional benefit to this system is that G begins to get the notion that other people have interests of their own.

When he raises the subject I can say, “Is this Pokemon time? Oh, you want to talk about Gyarados’s hit points? Good. We’ll talk about that during Pokemon time.” Ideally in this context, I don’t squish G’s interests, just corral them.

One battle a day is enough for anybody.

You flick, I tick

From time to time, G begins to develop a tick. The latest has been a sort of flicking of his fingers that seems to happen when he gets excited or anxious. Hoping to help him (and not his neurological hiccups) be the one in charge of his body I started a policy of “you flick, I tick[le].” That is, whenever he starts flicking his fingers, I tickle him. 

It is probably somewhat annoying, although he tolerates me.

“You flick, I tick” is also related to my “you flap, I clap” policy, for when G starts flapping his hands compulsively. These are intended as neither punitive nor judgmental; they should be merely observational. And, as I tell him, hey, if you love to flap, just keep on flapping…and I will keep on clapping. I like to clap -- and I love to tickle.

Tickling seems to be a good tool, also, when either child gets Stuck in a mood or thought process. Of course, this assumes a certain base level of receptivity to being tickled at a given moment.

Wouldn’t it be nice if we could tickle ourselves out of being stuck?

 

And, finally…

The “Mombulance” (also available in “Dad” and “Person” models)

“Wheee-oooh, Whee-oooh…” You hear the siren in the distance. It approaches…closer and closer. To your surprise, it pulls up outside of your door! You venture onto your stoop. A hunky paramedic steps out (gender – up to you).

“Ma’am,” s/he orders, “Step away from the residence. Put down the crayon, computer, dishcloth, phone and banana peel.”

Several other paramedics roll a stretcher toward you. As you climb onto it you note that a nanny and several fun, inclusive kids are headed toward your house, loaded with healthy, delicious snacks, games and educational yet entertaining dvds.  You see a special caddy full of trashy magazines affixed to the side of the stretcher. You wave sweetly to your children, who don’t even notice you are leaving. As you are rolled into the ambulance you see that you are surrounded by clean, uncluttered, chic-yet-soothing décor.

Hunky Paramedic hands you a beverage, informs you that en-route massage is available by request, and closes the back doors of the Mombulance.

You are All. Alone. Ahhh.

Ok, I made that one up.

If anyone has suggestions about moderating random sounds that seem to sound good to G Inside his head but sound really bad to those Outside his head and/or on curbing jewelry appropriation and repurposing please to inform.

Love,

Full Spectrum Mama