The Least Popular Kid in the Class – Part One

As we got ready to head back to school this morning after “vacation,” Z was bouncing off the walls: “I can’t wait, I can’t wait, I can’t wait,” she chanted.  G was more circumspect, and his little face was tight.

I hugged him and asked, “Whatsa matter, buddy?”

“I just don’t wanna go back to school.”

Oh, parents everywhere, hear my cry. Wide. Range. Of. Emotions. (W.R.O.E.)

We talked some about it – wonderful teachers…learning, importance thereof…how we can’t just play aaaaaaaaaallllll the time – but still…W.R.O.E.

Since dropping him off (did his sister even notice my leaving? I think not.) I’m stuck on an incident from a few weeks ago:

“I hope you are feeling better,” G’s beloved teacher from third and fourth grade had called out to him as we left school.

“What happened?” I asked.

“Nothing,” G responded, too emphatically.

“Then why did Mr. __ ask you that?”

“Nothing! No reason!”

I pushed. It felt right this time (sometimes it’s better to let go, I know).

At length, this story, as according to G, emerged:

G’s teacher likes to start off the day by asking thought-provoking questions during “morning meeting.” Often, these questions are like koans,* in that there is no “right” answer.

That particular day, the discussion was led by the teacher’s aide (who happens to work with G) and the question was, “What would you do if you we're the least popular kid in class? What would you do if you were the parent of that kid?"

G’s answer? “I think I am the least popular kid in class and I do nothing because I don't care about being cool; I would say to my child, 'Don't worry about it because when you grow up the weird will triumph!'"

His response, so brave and wise, took my breath away. (Mothers are so objective.) Also, the whole thing made me want to throw up, especially after what he said next:

“Then,” he continued, “for some reason, I started crying.”

You know how you’d do anything on earth for your baby (whoever your baby is, maybe it’s your partner, your cat…)? At that moment I promised the universe ANYTHING if it would only show me what to do to fix this situation. 

As we shift into the tween and dread middle school years, I fear social issues can only gather weight. As it stands, we drive hours to play with kids G has really connected with; plus we have carefully sought-out play dates in other local school districts.  And it’s not like G’s no fun to play with! He’s a really fun kid, if sometimes a bit fixated on Pokemon. He’s just stuck in a small school right now, where the particular mix of kids has left him…friendless.

Later, G asked me, “So how did you feel when I told you that?”

I thought about “that” for a minute. “First, I felt proud and happy, because you are so wise. But, also, I felt sad, because you felt that way and you must’ve been through quite a journey to get to feeling that way. I guess I also felt hopeful, that you will be around a more diverse bunch of kids soon.”

I paused and then asked, “How did YOU feel after all that drama?”

“I had mixed feelings.”

“Like what?”

“It’s hard to explain.”

I pressed him a little bit more.

“Stuff.”

…”STUFF???!!!”

Now that’s a “normal” tween answer!

(To be continued…)

Love,

Full Spectrum Mama

* Merriam-Webster defines koan as, “a paradox to be meditated upon.” The concept arose from the Zen Buddhist tradition.

Process, Represent, Toot

The Meeting

Just before the holiday break, G, whose autism spectrum disorder presents with a variety of significant motor and neural challenges, lost his IEP status. Having access to an IEP (an Individualized Education Program [or Plan]), or what used to be known as “being in special ed.” is federally mandated through the Individuals with Disabilities Education Act, but is administered differently from state to state. In Vermont, the threshold for “adverse effect” is testing below the 15^th percentile.  At his three-year IEP evaluation, G tested slightly above this percentile on one measure (reading), and substantially above on another (math).  Several of the nine people assembled in that room thought this was terrific news.

The rest of us knew they had used the wrong measures.

Those of us with children in the IEP system periodically receive giant stacks of paperwork from which we are meant to glean both

1.     what is important in our child’s life and

2.     which areas are open to our active participation.

Had I read – somewhere in the latest bureaucratic morass of information packets and forms requiring my signature - the single sentence, “We will be testing G on math and reading,” I would have taken notice. Had I understood this one piece of information, I could have told them weeks in advance that he wouldn’t qualify and could have saved my son a whole mess of unnecessary testing.

Unfortunately, however, I – holder of an Ivy League Ph.D. who reads every word in these piles – was unable to discern this simple fact in time. I shudder to think how those parents who are unaccustomed to giant morasses of the written word variety process these packets.

Fortunately, I was tipped off the day before the meeting that G was about to lose his IEP status. I thus was able to PROCESS the feelings and ideas that would have squished me (on my slice of the spectrum big feelings of any sort cause shutdown), and thereby prevented me from any meaningful participation…had they been new to me at the start of the IEP meeting.

For maximum authority, I dressed in my teaching clothes -- grown-up style duds in my requisite Goth black. In Vermont, not wearing denim and fleece is a badge of sophistication and, possibly (I hoped), power. 

The district brought in the big guns, the Director of the district, to break this news to G’s “team.” I believe they expected G’s teacher and I to be cowed but we were not. 

G’s teacher was a fierce and compelling advocate, who came prepared with an arsenal of points in favor of G’s continuing on an IEP. He asserted that ALL of G’s teachers feel very strongly that he needs to be on an IEP; that indeed his Literature Circles teacher says he is “the one child out of 40-plus in his group who absolutely must be on an IEP.”

We were told that the Feelings of teachers don’t matter.

 We were told only “objective” measures can be used to justify (the funding of) a child’s (expensive) IEP status.

Dueling acronyms were bandied about, statistics parsed…

It emerged that it doesn’t actually matter if someone has a diagnosed disability… so long as that disability doesn’t place him or her in the 15^th percentile or below.

“He’s sort of a victim of his own success,” one “team” member explained, making the universal hand gesture for “gettin’ real high up there.” “These scores show that G is getting higher and higher up the mountain of achievement.”

Except - he’s not.

Where he used to get “Super!” and “100%!” (with smiley faces in the zeros) on his spelling tests, now that he is in fifth grade my gifted child can barely write a sentence. The PROCESS of writing a single word is very, very different from that of writing a sentence or paragraph. In writing more than one word, G loses focus. Although he reads at almost adult level and has marvelous comprehension, he misspells 50% or more of words. Without reminders, he does not capitalize first words of sentences, nor does he punctuate.

I was furious, but manageably so, since I’d had time to PROCESS: “Here is a kid, I said with deadly calm, “who should be testing in the 80^th and 90^th percentiles based on his intelligence, but because of his disability is testing in the bottom third and there’s nothing we as a school community can do about it???”

“Well,” the district psychiatrist informed me, “that is a symptom of a larger societal problem.”

“All we are responsible for,” added the Director, in a tone I read as smug (but I am not such a good reader of tone), “is providing a basic ‘free and appropriate public education.’”

”Then what is our purpose here? If letting our children down is acceptable to you, why are you here?” I asked.

There was no response.

So I continued, calling on some of the many ideas that had been racing through my mind all night: “I would suggest, then, if you want to help G you ought to test him on the measures in which he is falling behind. Please tell me the other areas in which students can be found eligible and [teacher] and I will let you know which of those are a good fit.”

“’Written Expression’ and ‘Orientation/Mobility’,” said the Director, after a pause.

“Perfect.” Said I. “Those are the very areas in which he is struggling.”

Having had the opportunity to PROCESS, I was able to question and to REPRESENT my son’s interests: to bust out my big words and my for-once tangibly-useful doctorate and the statistics classes I took in graduate school. Once again, what do parents who haven’t had the privilege of extended education -- or who don’t have the skills or confidence to stand up to Important People – do under similar circumstances? I could never have effectively (confidently, somewhat skillfully) advocated for G if I hadn’t spent the entire night before thinking about what to ask and say in this meeting. Spending my entire life in academia probably helped too. 

Do IEPs help?…Sometimes.

I was told in this meeting, and it makes some sense, that “the three-year evaluation is intended to protect students from being dumped into the special ed. system and staying there even when they have progressed out of it.”

Ambivalence is as much a part of this process as advocacy! I certainly don’t want G to be subject to – or feel himself – the stigma that sadly remains associated with being on an IEP. So why on earth would I want him to receive services if they were not crucial to his survival as a student? IF it helps him – does it? – I want him to have all the helpful help that can be helped…

Without any services, without aid with transitions and organization, G might get lost, “fall through the cracks” -- or he might “rise to the occasion.” He might be “just another gifted kid not living up to his potential”…

As his teachers and I watch the gap widen between G’s intelligence and intentions, and his written expression and executive function, we wonder if we will be able to get him the services he needs. His teachers serve dozens of students and are at the mercy of the system for their livelihood. While G’s teachers are more than willing to advocate ardently for G, there is only so much they can do. The rest will be up to his family and community. And to him.

A.A. Gill’s wise recent article in Vanity Fair (http://www.vanityfair.com/society/2012/12/aa-gill-schools-ruining-our-kids

-- enjoy!) gives pause to the notion that school success is the sole predictor of life success. But if G struggles academically because of his disability he should have access to help if he, in all good faith, wants to succeed in school! 

In effect, the astonishingly low “adverse effect” threshold in VT, coupled with unsuitable testing has turned my son into an experiment.

Process, Represent, Toot

As rough as the social piece can be for G right now, and as challenging as some aspects of school can be for him as well, my deepest, darkest fear, the one in my mind almost constantly is: what will G do when I am gone? I know some of you other parents out there feel me on this. Maybe he will be just fine. I sure hope so! But he might need some help and -- as any parent would -- I hope that when he needs that help, the help will be there.

Will it?

Here, G may be losing his elementary school safety net. Since one might naturally assume that childhood is where the best safety nets would be found, this raises doubts about safety nets in general. What about the bigger safety net for people, including adults, who are not neurotypical or are differently-abled? What about the “larger societal problem” to which the district psychiatrist referred???

With the recent stigmatization of Aspergers and autism in the media (please see previous post: http://fullspectrummama.blogspot.com/2012/12/ignorance-ahoy.html), it seems a fabulous time to begin to tackle these problems. Chief among them are ignorance and limited resources in schools* and communities. Advocacy both for students and their parents (not all of whom know their rights!), as well as education and community efforts around disability might be some directions to take whatever talents and energy we have.

So long as I have a good chunk of PROCESSing time, meaning I know IN ADVANCE what issues and objections will be raised, I should be able to lend my voice to these efforts. This IEP meeting was a great lesson for me about how to optimize my ability to REPRESENT my own and my children’s best interests. Like G, apparently, I need time to internally PROCESS and then transition into external expression and interaction in any potentially intense context. In this post, I am TOOTING my own horn about how I handled the whole thing, because I just learned so dang much. 

I want to use that knowledge to foster G’s ability to PROCESS his sensory and intellectual and emotional intake, so that he can best REPRESENT himself in his endeavors, and TOOT his own horn – stand up for himself and be proud and, especially, self-advocate -- when appropriate.

Resolution

G’s remarkably operatic three-year IEP evaluation began with some serious acrimony, officiousness and righteousness. There occurred pounding of tables, raised voices, trembling (not even by me!).  Praise be, we all managed to stay in the room until some consensus was reached. Thanks to G’s teacher and me, the meeting ended up with the team’s agreeing that G was not well served by the testing that had taken place. He will now be tested in the other two areas of eligibility in Vermont, “Written Expression,’ and “Orientation/Mobility.” 

So G is about to endure another round of testing, this time in areas in which he actually does have significant adverse effect. We shall see if it meets the criteria. If so, may the help he gets be targeted to his real needs. May it be helpful.

This is the hope with which many of us left this meeting.

As I walked out of the school, feeling I had just, for once, made the best of a difficult situation – i.e. for once I had not been completely overwhelmed  – I looked down at my “professional” all-black outfit with a feeling of maturity and satisfaction.

I then noticed that I was completely covered in white cat hair. Glad I didn’t find THAT out at the beginning of the meeting.

Love,

Full Spectrum Mama

* I cannot imagine the Director of the district got into the field of education in order to deprive students of services due to limited resources (which inevitably must result in tighter testing standards). This must be one of the most difficult aspects of the job.

Curriculum?…Whatever.

Many of our friends and family members are educators, and many care intensely about what is taught in our schools. I myself am a teacher. So I feel a bit disloyal and even heretical saying this: as far as my own kids go, I don’t care, like, even at all about curriculum.

Actually, I had always planned to homeschool my children, but circumstances conspired to bring me one child who doesn’t necessarily want but desperately needs all the socializing he can get and one who would probably go postal within three consecutive days spent with Mama and without major social activity. For Z, adult acolytes will do in a pinch, but peer adulation and goose-stepped errand-running is preferred; for E, the biggest school lessons are ones he doesn’t necessarily learn at home: that while everybody is different, most people judge others for being different; that we can’t spend all our time reading; that people change their minds and plans change; how to "read" unfamiliar situations effectively…

                                    Figure I – Usefulness of Curriculum Excellence Pie Chart

As this scientific pie chart demonstrates, most learners benefit enormously from a thoughtful, organized curriculum.  I contend that my children, along with certain others such as perhaps some gifted students, or some with significant delays or learning differences, do not. It’s not that curriculum excellence always impinges on these students or is a negative thing, it just does not matter as it would for other students. My learners gain most from teachers of exceptional character and eagle eyes. So I don’t particularly care if they spend a day chasing caterpillars in the meadow or making 3-D models of the Green Mountains.

In my ideal world, time spent on curriculum development (not to mention test-prep – another post!) might well be used to consider and research how to teach contentment or generosity or ways to encourage curiosity.

However, in this reality, teachers don’t have that kind of freedom, regardless of whether they would willingly toe the Full Spectrum line. So I care that -- insofar as possible -- my kids have shining morning faces and don’t get dragged down by awful beastly kids or dreadful, serving-time-until-retirement teachers. 

G spends most of his time at home reading and learning thereby. At school, this direct absorption of knowledge is somewhat compromised by wide-ranging sensory and emotional overload.* In other words, much of his actual intellectual progress probably occurs at home.

Z isn’t too interested in books…yet. But she could efficiently extract all the necessary knowledge for an astronomical level of success from two potatoes, a rotten log and a maraca.

So, if not book-larnin’ and curricula, what can teachers offer such children?

What I hope for from teachers is:

1.     that they be kind, and

2.     that they model empathy,

3.     good judgment, and

4.     integrity; and

5.     hold an atmosphere where bullying is simply and absolutely not a possibility either for potential perpetrators OR victims.

Why?

1.     Kindness: I hope it is not too much to hope that the logic behind requesting kindness of elementary school teachers is a no-brainer.

2.     Empathy: Some non-autistic people SAY that people with autism lack empathy. This has not been my experience at all. G is the most softhearted person I know. I will say it is sometimes a stretch for him to understand what other people are feeling when his senses and neurons are feeling assaulted, but once G knows what's up he cares and understands and acts on those feelings. That is, he empathizes, often too much (so that his feelings become painful and he finds it hard to function...).  Z sometimes lacks empathy because she is in survival mode.  Teachers with healthy instincts for and expressions of this emotion offer lessons in positive, pro-social empathy that students can carry throughout their entire lives.

3.     Good judgment: discernment, moderation, discipline and common sense are elusive for G, optional for Z; as much as possible, they need to see them in action.

4.     Integrity: I want my children to see their most esteemed role models as people who follow their consciences and follow through on their word. In a classroom setting, this could be as plain as setting clear rules and consequences. When G kicked his cat because his cat knocked over his beloved fish’s tank and killed the fish, he felt guilty. I told him, “That was a natural thing to do – your cat will forgive you and you’ll do better next time.” When he told his teacher – a former Buddhist monk – about this incident, his teacher (in the context of an appropriate lesson for the whole classroom, in which many students apparently thought kicking a cat was funny) vehemently scolded him. I like that his teacher did this: he wasn’t trying to make himself popular, nor was he taking the easy, lame approach; he was speaking the truth as he knew it.

5.     No Bullying: some kids, like G, are more vulnerable to being bullied or, like Z, to being bullies. Both kinds lose in a chaotic classroom. When teachers hold the classroom space as a safe one, everyone wins. This fall, I finally had an opportunity to enlist Z’s strengths in a positive fashion. A little boy from her preschool had enrolled in kindergarten and right off the bat was getting bullied on the playground by some fifth grade boys. Z hasn’t got a bit of “victim” on and I knew that by her patronage alone, this sweet little boy would be safe. As well, her kindest instincts would be called into play in caring for this wee friend. Now I just hope those fifth graders are ok.

I spend my advocacy, that tacit, somewhat-limited leeway every parent has, on the above qualities. As long as teachers are decent people and in charge of the classroom we’re good. We have done very well so far – after all, why do people choose to become teachers? (Hint: it’s not the lucrative salary.)  I figure the clan can always learn “the new math,” but if their hearts are hurting that’s a MUCH bigger issue. 

Love,

Full Spectrum Mama

* Here is an example. At the end of fourth grade, G’s class had an end-of-school open house to share the students’ Native American projects.  There were So! Many! people in that classroom, and so many sights, bright lights and sounds to take in, that I began to get a migraine. Consequently, at this event, I could barely see people and when I could they made me nervous as I couldn’t even fathom or read what they were thinking and feeling in that context.  I had a compelling urge to flee.

Adding to that urge was the fact that G was wandering around aimlessly, talking loudly and constantly to anyone nearby without even looking at his putative listener to see if he was being heard.

Having cornered them in a relatively quiet spot, I asked his teachers, “Is he always like this in the classroom?”

“Pretty much,” they told me, with love in their voices, “Yes.”

With all due respect to G’s WONDERFUL teachers, HOW, then, can he LEARN?  I mean, I know he learns some stuff but there must be so much that is lost in the process!

 On our walk home that day I shared that being in that classroom was very challenging for me.

“Is it challenging for you?” I wondered, casually.

“Yes.”

“Is that why you talk a lot sometimes, and in a loud voice?”

 “Yes.”

 Having been so profoundly overloaded, I was daunted to realize that this is what G and all students and their teachers deal with every day. I am sure many – most -- kids are able to navigate such environments quite well, but G is not one of them.

Barring private school or a “separate-but-‘equal’” classroom for those with sensory and other neurological and/or emotional differences, what can one do to mitigate such overwhelming environments, with so many people, visual and aural and other stimuli, social and academic expectations to be met…??? How can students with sensory integration issues be effectively integrated in the classroom? If help is needed in the classroom, how can we de-stigmatize that help?

?

High Five!

I was driving with G and a sleeping Z the other day and the Violent Femmes’ “Blister in the Sun” came on and I told G, “You have to know this song. It’s one of the songs of our people.” The internal litany of my fears for his teenage-period drenched my brain instantaneously. As I sometimes do -- since my stated position vis-à-vis worrying is Against -- I proactively reviewed my mental checklist of the tribes that might protectively accompany G through his teen years: Dungeons and Dragons and other gaming groups, dorky smart kids, lonely Goths, Drama Club, the Society for Creative Anachronism folks (sensing some overlap here?)…Then I started to actually listen to the long-familiar lyrics of the song I had instructed him to follow (http://www.lyricsfreak.com/v/violent+femmes/blister+in+the+sun_20144625.html).

Wha-a-at?

“Never mind the song, buddy,” I said, hitting the scan button pronto. Anyway, who am I to decide which people my son will affiliate with? Maybe I am erroneously offering him the signifiers for particular alternative tribes while he is or will be drawn to a completely different subgroup. Still, I hope he will be able to discern and master those actions and items that we use to recognize others “like us” – whatever and whoever they may be.

For now, he’s really digging on “The Black Sabbaths.” One of his signature communiqués involves growling, especially if he thinks anyone is teasing him. Another is his jig of joy, hands and feet flapping, a big goofy grin on his face. Sometimes, during the latter, he trips himself.

I’m not sure I ever quite got the signals just right…but I still have some friends. One time my dear friend Bob  (bobparkswriter.com) was out on a run and passed by my house and I happened to be outside. We had a nice long conversation about aspergers syndrome and how both of us identify as neurologically different and aspergian although we remain undiagnosed. Then, when he was about to leave, we tried to high five…and missed.

Z will have her choice of tribe. She will wear a glitter sock with a thrifted ‘70s hiking boot (real-life example) and the cool kids will think it is cool and the anti-cool kids will think it is anti-cool. My urge with her is more to de-commercialize/de-massify, to offer choices that allow her to go inside and see who she is -- not in-relation but in Herself. 

As things stand, she prefers to be surrounded by acolytes at all times.  The phrase, “I need space” feels useful to many of us because it has a certain neutrality. It sounds better than, say, “I don’t want to play with you,” or “I don’t like you.”

Not to Z.

Recently, my resilient girl was uncharacteristically devastated by two different friends using this phrase with her to, well, get some space.  When, after the second incident, we had a talk about “needing space,” she shared that being told someone “needs space” felt very hurtful, but she also said it was “hard to understand.” Because of the latter, she found the request difficult to honor and exacerbated both situations.

Not knowing what else to do -- and aware I was not being entirely truthful -- I told her, “Mama will never need space from you;” I grabbed her and made her walk around clutched (by me) to my leg for an afternoon, much to her delight.

These “need space” incidents notwithstanding, Z will undoubtedly be able to attract an endless stream of people to her side and she will understand and manipulate their diverse cultural signals and signifiers with ease.  My hope is that she will feel fully worthwhile when alone. I hope she will learn to take “I need space” – in whatever form it is expressed – as, if not a totally positive thing, something that she can at least comprehend...and respect.

Another beloved friend – always a teacher, and variously a dean, headmaster, and minister -- once asked me if I thought that perhaps G and Z in some sense constitute and intensify one another’s differences. He wrote, “I wonder if Z's most challenging explorations to the left sometimes encourage G to the right, sort of like a couple that can afford for either [one] to have a tantrum or ‘break down’ but not both simultaneously.” At times, it does seem to happen in this way; other times, the opposite seems true and they seem to symbiotically draw one another closer.

Despite their seeming to occupy very different spots on a Full Spectrum I have to allow room for these two children to grow in their own unique ways, perhaps even to grow closer to “normal,” and therefore also more similar to each other.

I have to let my children be themselves. But one of them – guess which -- will probably miss high fives a lot of the time.

Most adults, at least, know the proper response to such goofiness: So what?

High five!

Love,

Full Spectrum Mama