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

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:

A friend posted this question on facebook:

 ·

Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?

Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:

how people see themselves

and  

how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:

if Everybody is different,

then "different in the way her mind [body, etc] works" or "from a different

culture" (or whatEVER)

becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

THE GLOBULAR SPECTRO-CONTINUUM

Someone posted this on my Facebook page:

         Figure I – ASPERGERS Acrostic Meme

A bunch of autistic people, people with autism, parents of autistic people and parents of people with autism (bear with me on these labels, just tryna make everyone happy!) responded.

At some point, early on, someone in my extended family commented as follows:

ummm.. Well I know it's uncool to say it, but those things apply on a LOT of levels to many people, even those not on the spectrum. Aren't we all on the spectrum to some degree? I mean that is what a spectrum is, from the smallest degree to the most challenged. We all fall on there somewhere.

Then, perhaps fearing the Wrath of the Autism Spectrum, that person removed the above comment before anyone had a chance to respond.

But I thought it might be a good inroad for an important and necessary conversation. So I saved it and thought about it and here’s my answer:

Short Version:

…Yes!

And…No!

Long Version:

Yes, by all means, I hope people DO feel included – in general and in this here Full Spectrum! I want neurotypical people and non-neurotypical people and everybody in-between to relate to each other with empathy and compassion. I hope very much that people relate their own “endless talking” or “rigidity” or “giftedness” to those qualities in others, and therefore become more open and accepting. I think that’s the kind part of the intention in this comment.

Finding out about Asperger's syndrome (now officially known as an autism spectrum disorder) through having a son with that diagnosis has certainly helped me with my own lifelong struggles with a different neurology (diagnosed only later in life). Based on what people have told me, this blog speaks to a variety of individuals who relate to our experiences, not just vis-à-vis autism but attachment disorders and family stuff and “human being” as well. In terms of specific differences, readers have told me they’ve recognized attachment-disordered traits in family members and themselves and that our experiences have helped them deal better; same for autism…

As for the actual person who made this comment, I would say that we are related and we share a lot of neurology. Many of these above traits, like being “sensitive to criticism” or having an “advanced vocabulary,” do run in families -- whether from culture or genetics or both.

Besides, things like a tendency to be “easily distressed” and being “socially challenged” are not restricted to people on the autism spectrum and their families. Nor are being “gifted” or “remiss” &c traits of only people in the special autism spectrum disorder/Asperger’s association.

BUT!

[Names of commenters on this post] and I, indeed all of us who are on the autism spectrum and/or are raising children who are, experience moderate to severe social challenges and neurological differences that affect all of our lives in significant ways. Some of us don’t just “relate” to the traits on this list, we are defined by them, especially by others – and most especially by the neurotypical world.

 Much as we hope to

help our children/ourselves accept and/or transcend disability and/or

celebrate their/our unique qualities and/or

work toward a culture where neuro- and other diversity is a given and all neurologies and disabilities and differences are

            VALUED

RESPECTED and

TAKEN INTO ACCOUNT,

our children (and sometimes we ourselves) experience challenges (and sometimes need services and accommodations) that most others, quite simply, don't.

We’ve had to fight hard for our kids and ourselves, at times just to hold steady at “okay” or “barely okay.” We’ve got IEPs,* 504s,* behavioral plans, stacks of test results…Most of us have daunting piles of (mostly unread) books on the trajectory from Sensory Processing Disorder onward…Sometimes we have to get babysitters for our teenagers (if we can afford it – my average is twice yearly).

We have to wade through mountains of labels and advice from specialists and experts, and consider (or not! [and then we have to deflect!]) “cures” directed – mostly well-meaningly – at ourselves, our parenting, our differences, our children, our families…

We frequently get asked to participate in unwanted meetings -- and then we have to wrangle for the meetings we do want.

We get called in to school when our kid is quacking in assembly; when the teacher wants to meet with our child’s class without our child present to explain why s/he is not “weird” but “different;” called in because our kid is ‘agitated” over a challenge a neurotypical kid would not even notice, such as a change in routine…

Do these things sound familiar? If not, then you and/or your child probably do not have autism or, for that matter, some other “special need.” I am not trying to say those on the spectrum are members of some exclusive club, I am trying to be clear on what is what:

Having autism/being autistic is NOT something everyone shares. There is an autism spectrum, and there is a spectrum that leads, in spectrum fashion, up to that spectrum, but it is not the same.

The same might be said of an attachment disorder spectrum. My other, non-autism-spectrum-y child does not have a Severe attachment disorder, wherein people are unable to form meaningful connections with others. On the attachment disorder spectrum, she falls on what’s known as the Mild to Moderate attachment disorder section, where attachments are possible but often fraught. Healthily-attached children without attachment disorders may share some traits that are deeply familiar to parents of children with attachment disorders (such as controlling behavior or hoarding), but that does not mean they have the clinically defined condition known as an attachment disorder! (More on this below…)

All behaviors occur in populations to varying degrees and in a myriad of combinations. When an individual is found to be “out of the ‘norm’” – by the schools and/or parent(s) or guardian(s) --  they usually get evaluated and labeled and their differences may then be addressed within that paradigm. This process alone can be deeply grueling.

It may also sometimes be rewarding, at least insofar as it may offer insights for interacting, processing, succeeding in a neurotypical (and/or relatively healthily-attached, and/or typically-abled) world. With that in mind, Full Spectrum Mama investigates daily life with a bunch of people who happen to embody some useful labels -- but are more than just these labels! -- in hopes of offering something worthwhile shining out of our Full Spectrum.

Respect for neurodiversity is a key theme for the Full Spectrum Project -- and I believe that’s a piece of where my erstwhile commentator was coming from, as well as the intent of the above acrostic.

One of the greatest things to come out of the neurodiverty movement(s) is this idea that the ideas and thought patterns of divergent neurologies may be equally valid and in some cases superior. Before, we might’ve been inclined to dismiss ourselves. Now, we are gradually coming to value different perspectives more – even if the wider world has a ways to go to catch up.

Divergent neurology is, apparently, becoming more and more common -- and as such one hopes it will be less and less marginalized, less often dismissed as “remiss.” I hope, though, that increasing acceptance and diversity never amount to attempted homogeneity!

I’ve always been openly against moral relativism – the idea that all moral views deserve equal respect and are equally valid - on this blog and as a longtime professor of ethics. But I do espouse “neural relativism:” the idea that all neurologies are worthy of respect and consideration. This is not to imply that they are all the same: commonalities do not necessarily mean shared identity, status or diagnosis. To suggest that they do, as my dear commentator seemed to be doing – however briefly – might seem to trivialize the very real struggles many of us face.

Here’s an example: if you have received a diagnosis of an autism spectrum disorder, you know that your neural processes are “not normal.” What does this mean, exactly? For many, it has historically meant reduced self-trust, a devaluation of one’s “wrong” thinking. This is changing. Today, many of us contend that knowing your thought processes, sensory processing and reactions might be different from the mainstream is useful information, but it doesn’t mean we should thus dismiss our concerns and conclusions based on that divergence!

The mainstream certainly keeps things somewhat on track, but it has also brought us witch hunts, slavery, centuries of marriage inequality, Britney Spears, Monsanto, “Black Friday,” the 1%, dodgeball, Flamin’ Hot Cheetos …

Knowledge is power. A self-evident and over-quoted phrase? Maybe to you (or maybe not!). Until I began to learn about my son’s and my non-typical neurology, until I began to address certain needs (such as sensory breaks) as needs, NOT preferences, I spent a lot of time feeling as if I was an alien being assaulted by humans and environments (tangent: animals were my salvation). Migraines were (and are) a major factor in life. Other people’s’ brains and actions were so opaque to me that I tended to doubt myself and give others credence when I should not have and thereby made myself vulnerable to exploitation, an experience many of my spectrum-y friends share. The incidence of exploitation and abuse is anecdotally higher among those on the autism spectrum. I do think and hope that this terrible pattern is changing with increased knowledge and awareness.

Learning about the neurodiverse brain has shown me, finally, how to set boundaries and how to trust in myself, and to teach my children to do the same. I hope G is learning these skills in time to spare him much suffering. I hope it can make him feel less alienated, less “socially challenged,” more connected.

Having a daughter who exhibits the mirror opposite of the “typically ‘autistic’” traits exhibited by my son (and, in many cases, by me) has given me a lot to chew on in this idea of connection. Learning about attachment disorders has also shown us how to set boundaries for Z and build her self-confidence and trust -- in us and in herself.

In short, we’ve seen how the tools affiliated with certain labels and diagnoses may be effective (or, plenty of times, not) in a wide range of contexts.

In this conversation about commonalities, meaning and context also play a huge role vis-à-vis appropriate tools, labels and analyses. When a healthily-attached child of four has a massive, age-appropriate tantrum, that’s healthy; when an eight year old with an attachment disorder does the same, it is an expression of a deeper pain. Or: when a healthily-attached child tests their evolving independence by being defiant, their parent may well view that behavior as natural and appropriate; whereas when a child with an attachment disorder acts defiant, it is typically because they feel unsafe and out of control inside – and untrusting. The latter child needs – in order to build trust, heal and feel safe – a very different response than does the former.

Therapeutic parenting, as defined by the therapist we have worked with, can look very different than your basic permissive vs. strict parenting spectrum. In my experience, therapeutic parenting of this flavor is not always looked upon kindly, particularly by the progressive parenting population. So, parents of children with attachment disorders may live with another difference that is challenging -- and that too may feel trivialized by those who try to say we are all the same.

To summarize, I’m first aiming to make clear distinctions within connection. Second, out of that clarity, I celebrate the incredible, perhaps more-broadly applicable, helpfulness of the tools we have been blessed to glean from learning about aspects of the labels that represent elements of the human beings in our family. Sometimes these tools are about healing and, yes, “curing” an attachment disorder; sometimes they are about understanding and creating space for divergent neurologies. They are always about growing in inclusion and peace. The whole Full Spectrum household has become happier now that we have these tools.

If reading about autism or attachment disorders or whatever (identifying with theASPERGERS acrostic, for example) helps you in some way, more power to you! Our journey in this wacky, divergent, polarizing, unifying enterprise was what got me started on this blog in the first place, because Full Spectrum Mama embraces connection within difference.

Learning more about autism has not convinced me that everyone has Asperger's or spectrum-y tendencies at all. In fact, I wish that were so, as children are not always particularly nice with those who are "different." G's differences from the general population are more than clear (along with his many wonderful qualities!!). He's faced far greater challenges socially and in general than the average kid, as I know the aforementioned facebook-commenting parents' children have.

Guess you could say I am not a parenting relativist either. I have personal, direct, experiential knowledge that parenting a child who has common sense and a reasonable level of social skills -- a child who I know with 100% certainty will be completely fine on his/her own as an adult --  is 37 bajillion times easier/less worrisome that parenting one who doesn’t share these life skills, though I wouldn’t trade or change the latter child for all the world.

Anyway, it’s not a contest. Of course all children and parents and people have challenges. The challenges of autism per se, though, are not really expressed by the fact that, sure, many people might share some of the qualities on this ASPERGERS acrostic list. At the same time, we want to be really careful to be sensitive around trumpeting the “difficulties” of autism in a time when fear-mongering around the “autism epidemic” is rampant.

This list is just a tool, I think, meant for people with asperger's syndrome and those who love 'em or want to to understand more about it. I can’t speak to the artist’s intention, but I can say with some confidence that s/he probably intended the list for a specifically asperger's-related purpose.

That being said, the whole point at Full Spectrum Mama – as I hope I have made clear, er…somewhat at length, herein -  is the connections between all of us. FSM engages the idea that we are all on a giant spectrum and that therefore the similarities and differences between us can be instructive - and funny. It entertains the idea that my two children, as PART of who they are, seem often to be truly on opposite areas of that giant spectrum. It explores these two vastly contrasting yet sometimes surprisingly connected areas of a Full Spectrum that happen to be known as autism and attachment disorder.

My intention is to be illuminative of one unique mix, to be inclusive, to describe our spectrum, where the tools that work for us might have a higher chance of working for others for the very fact that they are working (or not working, puh-lease!) for spectrum locations that seem poles apart. My daughter is not on the autism spectrum, my son is not on the attachment disorder spectrum, but they are both – as are we all – on the inclusive, colorful, beautiful FULL Spectrum.

When I started writing/drawing Full Spectrum Mama almost two years ago, I envisioned the Full Spectrum as a Line. Then it became a Circle. Now it’s time for a Globe!

Voilà – the Globular Spectro-Continuum!

    Figure II – The “3-D” Globular Spectro-Continuum

 Figure III – The Globular Spectro-Continuum: Cross-Section

Welcome.

Love,

Full Spectrum Mama

* Definitions – quoted verbatim from: http://www.washington.edu/doit/Stem/articles?52 :

IEP:

The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

504 Plan:

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

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.