Friday, December 21, 2012

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 15th 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 15th 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 80th and 90th 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 (
-- 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:, 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.


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.

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.

Tuesday, December 18, 2012

Ignorance Ahoy

In this time of pain and grief and uncertainty I'd like to say, Thanks, local paper, for perpetuating rampant stupidity:

Re: "Windham County schools helping students cope," by Howard Weiss-Tisman, 12/18/12

To the Editor,
As friends, parents of and/or persons with autism spectrum diagnoses, we would like to clarify some important and potentially damaging aspects of Weiss-Tisman's article. 
He wrote,  "...the alleged killer, had Asberger's [sic] syndrome or some other personality disorder, it was important not to draw conclusions, or make assumptions abut [sic] other children who suffer from mental illness."  (
Aspergers syndrome, following the publication of DSM5a to be known as an autism spectrum disorder, is definitively neither a Personality Disorder nor a type of mental illness. 
Persons with autism are in no way more inclined to violence than the average population; in many cases and in our own experience they are among the most gentle and emotionally empathetic people we know. In fact, persons with autism are significantly more likely to be Victims of violence than to commit it.
We support The Reformer's and all efforts to increase school safety. Our thoughts are with those who were impacted by Friday's terrible events. Let us be sure not to add tragedy to tragedy by perpetuating negative stereotypes around mental illness or autism. 
We ask that you publish this letter so that people in our community will not be misled into harmful and erroneous ideas about autism.
[FSM, friends, family]

Thursday, December 13, 2012


I recently spent a morning meandering and gabbing with a beloved friend. As we walked along a magical, secluded trail, she showed me some special spots where her children play together. “We are here a lot because we can’t be in public right now,” she confided. One of her children is going through a period of strong tantrums and the effort and strain of it in the social scene is just too much. She admitted how ashamed she feels when her child throws a public tantrum and how her fear of getting caught in that situation has vastly limited her social life. How isolating it can be…Having read some of my experiences here (and heard about them in person and seen them in real life), she added, “You know how it is!” Oh yes, Mama, I know how it is.

This conversation reminded me of some instances when I had no choice but to be out in the world while my children were going through changes. Bleak times filled with helplessness, anger, sadness and humiliation for all…Happily, what also came to mind were the times when someone – often a complete stranger – gave me love, peace and strength just when I needed it.

Everybody knows what a MILF is, right? Well, I want to talk about MILCS: Mothers I’d Like to Celebrate. I don’t even know if some of these people have children…But they are MOTHERS, for sure. See if you don’t agree.

Once, Z was having a ghastly tantrum and I had taken her outside to avoid disturbing G’s tae kwon do class.  People kept walking by and either totally avoiding us or looking pityingly at the poor, poor little girl.  Poor, poor little girl was so angry (no idea why, this was a daily occurrence at the time…) that nothing I knew of (not hugs, not threats of Consequences…) would stop the screams of rage. I was near tears.

As I stood there, trying to shrink as small as possible while still indicating that the tantruming child had someone watching her (for what that someone was worth), a woman came up to me and said, simply, “Mom, you are doing okay.” She wrapped me up in her arms and rocked me a little from side to side and then went on her way.

Hey you, lady who just hugged a pariah, you are doing more than ok.

Oh, here’s a good one. You know when someone thinks your child with an attachment disorder has autism and that your child with autism is neurotypical, or vice versa? Yeah, that happens to me sometimes.

I was at this fantastic storefront Aztec-Mexican restaurant in Norwalk, CT called Molcajetes ( with extended family when Z threw one of her most remarkable, powerful tantrums of all time. Full Spectrum Grandmother tried to intervene and got kicked for her troubles…Pardner tried joking her out of it with no luck…

Over the course of the next [period of time, I am not sure how long!] or so I spent with my rocking, growling, kicking, screaming daughter out on the stoop, not one but TWO women with autistic sons walked by at different times and commiserated with me over what they thought was a textbook autistic tantrum.

“Oh no,” I told each kind mother in turn. “The one with autism is sitting inside eating nicely!”

When Z was good and ready she pretty instantly stopped being upset and went inside and, with a big smile on her face, devoured enough food (fresh, garlicky guacamole and soft tacos and just-fried chips with that incredible slightly sweet cabbage salsa) to feed an army, which is kind of what she was. You need fuel for that kind of sally!

When Z was younger, I often felt as if people judged me as a mother for her behavior. I wished I could maybe wear a sign that said, “This is not a normal tantrum. I have tried everything you (or I, or anyone) could imagine to stop this tantrum and many others like it. Yes, my daughter was just hitting me and screaming as if I was hitting her but I was not, actually, hitting her…, as you can see right here with your own eyes. In fact, your staring at us might even fuel this little situation we got going on here. Now, please, I just have to sit here and wait it out so I would be so grateful if you would stop giving me dirty looks.”

Now that Z is a little older, people can tell her tantrums are not just run-of-the-mill. They can see that she is older than a “normal” age for tantrums, and that she is writhing and screaming, extensively, without any input. They seem somewhat less likely to be appalled -- and rather more likely to feel compassion for both the parent who stands helplessly witness to such an event and the child who cannot extricate herself from it – or let herself be extricated...

G has his moments too, whether from his really rare but quite memorable public tantrums to his more common general inappropriateness/cluelessness, not to mention flailing.

One time, after a hard day, I said to G as we were leaving a local co-op, “You have the most important thing, a kind and loving heart. Now you just need to pay attention to the world around you and work on your common sense.” (This is one version of my ad-nauseam-aforementioned Pay Attention to the World lectures.)

We had gotten into the car and had just begun to pull out of the parking lot when a woman with a silver bob wearing a striking purple jacket and lots of chunky silver jewelry waved me down, practically throwing herself in front of the car. Thinking maybe I had forgotten one of my organic, vegan, sustainable, equal-exchange, wallet-straining purchases, I stopped and rolled down my window.

 “That was one of the most inspiring things I have ever heard,” she told me. “It will echo inside me for a long time. Thank you.”

No, thank you, Ms. Silver-Purple Angel-Person. I will never forget you.

I tell these tales not to brag or make it seem like I am doing such a great job that was duly appreciated by these wise women (ha!), but to share that these women actually made it possible for me to Go On. Their simple acts of generosity have resonated in my life for months and years. They allowed me the space and peace in which I could settle my heart back into love for my children instead of fear. They made it possible for me to celebrate my children, just as they are, and so I celebrate them.

Just so, I hope when my friend who is stuck in the woods for now with her clan reads this she will know how truly I honor her finding a way to celebrate her children through it all. In addition, I hope she will encounter surprising (yet very welcome) love and acceptance when she does have to put herself and her family “out there,” just as I did with these MILCS: huge-hearted strangers, generous-spirited everyday angels who just
Went For It.

And guess what? We can all – in some way - do the same.

We all have the mental capacity to recognize opportunities to grow our hearts, to stretch a little or a lot. Sometimes it seems like we don’t have the emotional capacity to execute such acts of kindness and generosity, whether it’s due to emotive stinginess (high on the fear spectrum, no?) or the shyness of those on the awkward end of the social spectrum. It’s probably easier to be surprisingly kind to strangers, as these women were to me, but we encounter countless such opportunities of all sorts every day. And I am not talking about the somewhat trite “random acts of kindness” trope, because these acts are more than random. They are necessary.

You never know when your small action may make a real difference in someone’s life. Plus, I suspect our capacity to be generous and kind grows with the PRACTICE.  Be grateful for any everyday angel you meet…and pass it on!

Lest this seem preachy, I should add I’ve no idea what a generous spirit means to you in particular and no advice beyond the suggestion that choosing kindness at a given moment may resonate more than you’ll ever know.

Thanks and love forever, MILCS, and all you others trying to make sure your heart isn’t several sizes too small, and all y’all who are just plain trying,
Full Spectrum Mama