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.
-- 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.
