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

THE MEGA MASTER

Two weeks into this semester of Comparative Religion, a student called out at the end of class, “Dr. [Full Spectrum Mama], this is kind of a funny question but…are you [G]’s mom?”

It turns out that this fellow was one of G’s counsellors at a wilderness camp he attended this past summer. Because they hike up into the woods for camp, I hadn’t met some of the counsellors (the ones who were waiting mysteriously up at the Hogan every day).

My student, having watched me for two three-hour classes, said I “look and act exactly like [G],” so he “just had to ask.”

This gave me so much hope, because I am – despite my differences or because of them or some mixture thereof – totally fine. I don’t worry about me. But I DO worry about my son. And sometimes people think I over-identify with him, but this is because 1. I get him – profoundly, and, 2. I want him to be okay in the end, as I am.

I always tell people I was almost exactly like G at his age, but female, and people who’ve known me only as an adult don’t believe me, basically because they think G is  “more autistic” than they think I would have been. But I know, and I remember.

Heck, forget being “okay like I am” I would like to see – and do, often, see – G as being okay in different ways. And I would love for G to surpass me in the neurological department and anywhere else. Isn’t any parent glad to see their child out-do them? It seems like that would be a very visceral survival thing. Differences are welcome and celebrated in our family as well! When I see Z shining in her acrobatics class, doing things I can’t even imagine doing, I am beyond proud.

In addition to neurological and physical differences, we need to take into account temporal differences: when people presume that G will stay just as he is, rather than growing as I have and then some, I find it highly botherous.

In any case, G’s strengths and challenges resonate deeply with me, though I always try to respect his separateness and unique personhood. I currently am having an opportunity to distinguish between us in a major capacity, because…

The beginning of Middle School has been a breeze.

…Did I even just write that?

I have spent the last two to twelve years (depending on how you measure it) worrying about Middle School for my son -- at first because Middle School is usually dreadful; later, and in this mode much more assiduously, because of his social challenges.

Seventh grade was a low point in my life. There are a variety of reasons for this, but my social challenges would rank up there near or at the top. I was so painfully shy in my new school that I was unable to say hi to people. I didn’t want to insult them by implying that they knew me. But people took this as my being snobby! And that’s just one example!

Trust me - it was ghastly.

G has had some challenges, to be sure. The adjustment to lockers was…epic, and most of my concerns in Middle School Prayers remain relevant.  But the bottom line is he walks out of school every day waving casually: “Heeeeyy, so-and-so,” “Yo, dudette”…And people…reply?

Is Middle School better than it used to be? How can isolating children in one place at their most antisocial, brutal stage, while combining students from several elementary schools so that they are naturally forced to jockey for position and, therefore, usually, inclined to identify scapegoats, ever be good?

My seventh-grader rates every day an 8 or 9. His innate positivity?...Cluelessness? New and improved brand of Middle School?  I’m surprised – but I’ll take it!

As G headed to school today, his hands were wrapped in a homemade “Mega Master Mega Evolution” Bracelet for his imaginary Pokemon (Figure I).

          Figure I - "Hey Pokemon fans out there: this is [G], the Mega Master!" (Caption courtesy of G)

“[G],” I said gently, “you might want to leave that at home.”

“No way, mom. [Friend A{awkward, sweet guy}] and [Friend B{goofasurus maximus darling boy}]* will like it, and I don’t care about anybody else.”

I am so proud, and relieved beyond measure. Now what should I think about?

Love,

Full Spectrum Mama


* That's, count 'em, two friends. Two friends! 

MIDDLE SCHOOL* PRAYERS**

(SUBSTITUTION POLICY:

Please feel free to change the terms of any of these prayers** if they feel useful to you! For example: *“Middle School,” might become ANY school or institution or event or transition; **“prayers” might become wishes or hopes or a more formal type of prayer…

This post comes out of our Middle School Special Education Transition Orientation meeting, in which most of the parents were crying – and shared many of these concerns; it also comes out of my own fears about this transition; and from a few things G – who’s playing it mellow on this one -- has said. But I think the generalities and specifics may apply in a lot of situations.

I open with “Dear Universe” because it seems most inclusive and I love how the literal translation -- “one song” – includes and unifies this big ol’ glorious mess of a world. Please substitute God (however you mean this word, or whatever word your faith uses), or any other concept here, including “Dear me, may I do my best to ensure that…”)

Dear Universe,

May our children have a gentle transition to Middle School. Specifically,

1.      May they not succumb to the horrors of Homework –

a.       In the DOING of the Homework, may they not find it such that it is “the last straw” in a day in which there have already been enough struggles to succeed, often in areas of extraordinary challenges,  whether social, academic, emotional, neurological, physical...

May they have time, still, to be kids. May they have time to play with their families, rather than always trying to “catch up” on all these many levels – and rather than their families having to spend most of their time together waging mighty battles in the effort to compel our children to complete said Homework.

May you uplift the brave Mama of the Middle School Special Education Transition Orientation meeting who saw fit to refuse to force her child to do Homework because she chose, instead, to let her child have fun following her child’s very, very hard work during the school day.

b.      And, Dear Universe, even more specifically, in the matter of the KEEPING TRACK OF the Homework, may we all gain skill and patience in this area, for  it is immeasurably harder to get kids who are already at their limit to bring home extensive and organized information about assignments.

While we may take advantage of online and phone resources at the Middle School, may that extra step send neither we nor our children “over the edge.”

2.      May our children be undaunted and unbowed by the rigors and pitfalls of Physical Education --
.

a.       May their PARTICIPATION be unmarred by being always last chosen and barely tolerated…May all games be inclusive – and may the choosing of the teams, if teams there be, occur by fair and just and random means.

May the words of the outgoing principal at the Middle School Special Education Transition Orientation meeting, “We think it’s important for all students to fully experience this social, competitive aspect of middle school,” have been misspoken, for, when they were spoken, you, O Universe, could hear the air go out of the room. You could hear, surely, the thoughts of the people of the Middle School Special Education Transition Orientation meeting and they were: Compete? Really? Some of our kids can’t catch balls. That does not make them “less than,” but listen lady, for most of us P.E. is not gonna be a strong suit for our kids…

b.      May the new ritual of CHANGING for P.E. be less agonizing and costly than we expect. Please watch over our children as they attempt to tie their shoes, maintain a modicum of executive function, not lose EVERYTHING, put on and take off the right clothes at the right time and in the right order, not stare inappropriately, and so forth.

And, lo, though they may not succeed in these efforts, may they nonetheless not get teased in the locker room for these or any of many other possible reasons…:

1.      In the matter of our kids’ UNDERWEAR, may you ensure that nothing too awkward or inappropriate happens during the aforementioned change? Please? One parent asks, as she did of me yesterday, may we ensure that my child does not have little kid underwear on? Also, may the underwear be pulled neither way too high nor way too low? May G, for example, not wear his underwear backwards and in a total wedgie as he is generally wont to do?  

We are not asking for a trade, Dear Universe, but we do agree to do everything in our power to make sure these risks are minimized, such as the pre-departure underwear check; it’s just that the locker room itself is out of our hands.

3.      Bullying. Universe, You know this is a HUGE one for those of us with differences and/or with children with differences!

a.       May our children not BE BULLIED.

Yes, Dear Universe, we know that Middle School is the world epicenter of bullying, and we know that kids who are different get bullied MORE …yet we dare to dream that our prayers that our children not be bullied might be answered, whether by a zero-tolerance school environment, social skills classes, that one cool kid is who so cool he or she doesn’t need to shun someone who’s “weird,” some combination of these, etc.

MAY NO CHILDREN - ANYWHERE - BE VICTIMS OF VIOLENCE FOR ANY REASON, O Universe. And may this particular prayer be as unnecessary as it should be, rather than as ridiculous and unrealistic as it actually is. 

b.      May our children not be misperceived as BULLYING -- or pushed into BULLYING by peer pressure or anxiety, or by being BULLIED:

There is then the type of scenario where our kids act in ways that appear to be bullying when in fact they are just clueless…and sometimes, like my G, really large and intimidating despite being a gentle and loving lambikin.

And there’s the scenario where someone who is already struggling is forced over their sensorial or social tolerance limit to a point where they lash out in what feels like self-defense.

The overall high levels of social awkwardness and hierarchical jostling that accompany this transition make these kinds of mixups more likely and we pray, Dear Universe, that our children be kept safe from these dreadful possibilities.

4.      May the issue of varying levels of Maturity – Or lack thereof -- …combined with hormones…oh dear.

May we somehow help our children navigate this particular minefield with aplomb.

Or at least a minimum of outright disastrophes.

G and his peers on the autism spectrum may by definition have developmental delays and those, combined with certain physical developments, make for a complicated mix.  Other non-spectrum-y kids in Special Education may have similar issues, including challenges around judgment and impulse control.

Heading into a context where almost everybody is a seething mass of hormonal, social and mental changes will be…interesting at best.

Dear Universe, you’ll recall when I was a VERY young 12. Curious about sex, hormonal, but very, very innocent. G is similar, but, if it’s possible, even more oblivious. What G lacks in commonsensicals, he certainly makes up for in heart-of-gold, but I am not convinced this combo will serve him well for the next year or two.

Therefore, in your infinite wisdom and harmony may you at least try to help him and the rest of our children entering Middle School to not embarrass themselves unduly.

Please watch over our children and prevent them from seeming to be stalkers. 

We beg - beg! - that you not let them be taken advantage of. 

Also, please see that the age of their bodies and the age of their minds and emotions correspond at least slightly, both within their own beings and amongst their friends.

And may they find friends, O Universe. Even just one friend. One who doesn’t care if they still like playing, for instance, pokemon.

5.      May our children operate their Lockers –

Dear Universe, can you see our kids being really great with the whole locker thing? The whole make way directly to locker/remember the combination/get the thing (or things) that was needed from locker and/or place the thing (or things) that was no longer needed in locker/close locker/find way back to where supposed to be thing?

Yeah…no. We can’t either.

Well what about the part where someone goes with them and oversees the whole thing – we’re so sure that will go over great in Middle School. Not.

Or maybe we could give them a list of the above steps to follow (read: give them a list to lose on the first day of school)?

Dear Universe, can you please O please manage this one somehow for the sake of our dear children?

Because this is one where our fear is mighty and legit, albeit probably incomprehensible to some.

6.      May our children learn Self-Advocacy –

For we are not omnipresent – and we are sometimes, we admit, exhausted. As well, mortal.

           

If possible, may they begin to integrate, for themselves, some components of self-advocacy development, however small, however basic: what questions will I need to ask to complete this assignment? Where will my challenges be and how can I access the help I need to be successful? What are my rights and responsibilities -  here, now?

If possible, may their Executive Function improve such that they are developing in awareness of what they need and how they may best be served in their own actions and in the resources available to them…

And, whether or not our children are mainstreamed or in more specialized programs, semi-independent or not-,

7.      May the help they are given be Helpful and not Non-Helpful –

Over the years there have been periods where I would begin to see some or all of G’s work and assignments written out in someone else’s handwriting. Dear Universe, as you are no doubt aware, G is able to write. Does it take him longer to write something than the average student or adult paraprofessional? Yes. Does he have dysgraphia and other learning differences around writing? Yes. Yet having someone do all his work for him is unequivocally NON-helpful help. I suspect the paras in question were trying to be kind, or to speed things up, make things easier for all parties…In any case I know they were not intending to deprive my son of a learning opportunity. But that is just what they were doing.

Dear Universe, some of us fear that in the larger Middle School context, it might seem easier to just sort of pass our kids through the system, using precisely this sort of non-helpful (to our children) help. This would be a great loss for our children.

May our children instead benefit from Flexible Support, where sensitive teachers and helpers recognize when help is truly needed but pull back to allow students to fly on their own where they are able to fly; sometimes, when necessary, fluffing up their feathers and wings, and, the rest of the time, letting students make their own, probably imperfect but unique and rewarding flights…

May we, the staff, their peers, and their teachers balance our children’s overt needs – for security, for routine, for “success” and success – with the myriad of wonderful possibilities for new experiences and learning out there in Your Universe, Dear Universe.

Big thanks.

Love,

Full Spectrum Mama

RIDDIKULUS!

G’s latest invention is a Lego Boggart game. Boggarts are a type of magical beast in the Harry Potter books known for taking the shape of your greatest fear. In The Prisoner of Azkaban, the students learn how to conquer boggarts by facing one who is kept temporarily in a wardrobe in the teachers’ lounge.

G attached a spinning tube to a play board. You spin the spinner around and something appears -- “like the boggart coming out of the wardrobe.”  G spun the “wardrobe” to reveal a headless Lego guy mounted on the back with a scrap of paper that said “[G]” on it.

“That’s your greatest fear, Mom: a headless or dead [G].”

GULP. Yes.

I love my children equally. But Z will trounce anyone or anything that gets in her way, while G has a more tender, awkward way in the world. So I don’t really worry about Z’s survival. Whereas G could trip over his own foot and fall off a cliff, and he’d be yelling “Love you, Mama!” as he fell, just for example, not that I am actually thinking of this scenario.

Then another spin: “This one is [Z’s] greatest fear: a dead Mama.”

Um, whoah. The label now reads “Mom.”

Right again! It’s becoming clear that G is a LOT more perceptive than he lets on, or than he – not being a verbal processor -- can express.

Z’s greatest fear may well be losing me, as she is a most devoted daughter despite some of the challenges of our relationship. I am struck lately by how little she resents me, in spite of my (attachment-disorder-dictated) extraordinarily strict boundaries and constant monitoring. I am all over her like white on rice (I guess in our household I should say brown on rice) to make sure she feels safe, stays within important boundaries, and does right. And – unlike many strangers and even loved ones who look askance at therapeutic parenting -- mini-girlfriend just gets it. She knows her Mama does this all for her. She knows she needs it, maybe even better than I do. And she loves and respects me above all.

“And here’s mine, Mom…Mom?”

I’m still speechless.

“Here, look!”

I dare to peek: his scrap reads, “pokemon never existed.”

                                                     Figure I – “pokemon never existed.”

“And don’t worry, Mom. I made the spell to fix everything!” says G. Then, as he learned to from the book, he declares, “Riddikulus!”

Another turn, and the clasp on the side of the tube holds a scrap with a funny face.

                                                                 Figure II – “Riddikulus!”

Harry and his friends know the trick with your greatest fears is to make them funny.

Apparently, so does my son.

Love,

Full Spectrum Mama

GENGAR STYLE

I’m calling G because we are at a big, kid-filled birthday party and the dj is playing “Gangnam Style,” which he loves. He calls his version of the song and dance “Gengar Style,” after a naughty, levitating Shadow Type Pokemon called Gengar.* He’s way out on the playground with some kids he doesn’t know and, between calls to him to come boogie with me, I hear those loud “eeeeeh” noises that he makes sometimes because he likes them -- and other times because he’s socially overwhelmed. I hurry over and he’s progressed to shouting unintelligible sounds and making faces in the general direction of a play structure. Some younger kids are cowering and glowering nearby.

“What happened?” I ask, pulling him away as fast as I can.

“A girl threatened me.”

“How?”

“She told me she was going to beat me up!”

“That little girl with the sour face, who is much, much smaller than you?”

“Yes.” (G tends not to pay attention to his own size or age relative to others.)

I sigh, hug him. “She couldn’t, honey.”

“But she said she had beat up a 15 year old!”

“But baby, that’s not true. She’s a little girl.”

We pause. He’s probably taking in the fact that here again someone has lied and he has been unaware of that possibility.

“Well…Why?” I continue.

“Why what?”

“Why do you think that happened?”

Another pause.

“Because she said I was ‘in her face?’”

“Were you?”

“Yes.”

“Were you trying to threaten her?”

“No!”

The playground is a place where family and friends who know G in his home or social comfort zone often suddenly realize the extent of his social challenges.  Putting his face right in someone else’s face is one way he tries to connect, because he really does want to connect - so very much! He’s still figuring out other ways to do so, and in the meantime doesn’t seem to have integrated extensive advice against face-in-face.

I try to seize the teachable moment: “How do you think she felt when you got in her personal space, you know, ‘in her face’?”

“Mad?”

“I don’t think so…try again.”

“Angry?”

“Try again. Angry and mad are pretty much the same.”

“Threatened?”

“Yes. So I bet that’s why she threatened you, don’tcha think?”

He nods.

“And G, did you notice all those kids were much younger than you?”

"Not really.”

“They probably thought you were being a bully, G. Which of course you weren’t.”

G is the most gentle person I know, but he’s a really big dude with no idea of his own size or the impression it might give. 

I sigh. Again. “Oh sweety, I know you’d never want to scare anyone. But you have to try to think about whether other kids are bigger or smaller than you and what they might think you mean in your actions and words, okay? Do you think you can remember this next time?”

“I don’t know,” G says, shrugging.

By the time we reach the party shed, the song has ended. G goes in and sits back in a corner alone, looking perplexed. Eventually, some extra cupcake frosting comforts and cheers him up.

Sometimes G is served well by his unique neurology. His omnipresent honesty, truly original creativity, staunch reliability, deep loyalty and lack of regard for conventional measures of success or “coolness” are just a few traits that come to mind in this regard. I know he takes satisfaction in living by what he deems right and good. Those of us who “get” him celebrate his living by his own lights as well. Nevertheless, even these arguably superb qualities are not necessarily ones that lead to mainstream social acceptance!

Of course there’s neurologically-rooted stuff to work on too, like developing the tools to navigate playground dynamics, many of which are analogous to adult social milieus. It just sometimes seems the neurotypical world currently remains more inclined to marginalize both G’s particular gifts and his challenges than to celebrate or accommodate them.

Suppose G – because, as things stand, it’ll be on him to do so - takes a very long time to adapt here, what is the adult equivalent of frosting?

Oh yeah. Frosting. **

Love,

Full Spectrum Mama

* OMG I Just found this site: http://bulbapedia.bulbagarden.net/wiki/Gengar_(Pok%C3%A9mon).

Please, nobody show G – I will never see him again!

** We have a hunch that Pumpkin Pie may work, too and are going to find out next week! Happy Thanksgiving everybody!!!!