C
arol Greenburg is an autistic self-advocate, the
owner of Brooklyn Special Needs Consulting,
LLC., the New York City-based educational
advocacy and consulting company. She is a contributing editor to The Thinking Person’s Guide
to Autism, past Regional Director of the Autism
Women’s Network, and the former editor of many
Star Trek novels. Carol’s teenage son Arren is also on
the spectrum. I first met Carol at IMFAR in Atlanta,
where she was busy tweeting info to her (over 5,000)
followers. She is brilliant, engaging and an outstanding mom and friend.
MP: When was your own diagnosis?
CAROL: I was in my early forties. My son Ar-
ren (pronounced R-ren) had been diagnosed
two years earlier, when he was three and a half.
When I did a little research on autism, I was
continually promised by all these websites that
my child thought very differently than I did,
was in a totally different world than I was, and
to be prepared to enter that different world. I
did, and it wasn’t a different world at all. It was
the same one I’d been living in for a long time. I
was really shocked that not everybody else lived
in it. A lot of autistic
adults do get diagnosed after their children, but a lot of things
fell into place thinking
about my family.
MP: What were the
circumstances of Arren’s evaluation?
Arren, my dad and I have always had in common this loathing of being patronized. If someone expected performance on demand, like if a
teacher of Arren’s asked, “What color is that fire
truck? Is it blue or is it red? Arren wouldn’t answer because it’s a ridiculous question. The fire
engine is red. He can see that it’s red. Furthermore, he knows that the questioner knows that
it’s red, so there’s no need for him to provide
that information since it is already known.
MP: How have you negotiated the education
system for Arren?
CAROL: We have been suing the district every
single year to get reimbursement for what’s
called a Unilateral Placement. We opted out of
anything they could offer because everything
they were offering was
not appropriate for him.
The only place that was
clearly appropriate for
Arren (he’s been there
since he was about 4)
is the school he’s in,
which is a completely
private school. It’s not
a school that’s funded
by the state; it’s private and reserved for autistic
students. This school has no funding from the
government.
“Why can’t the world
just accept him the
way he is?”
CAROL: We had put Arren in a Montessori
preschool. He’s always been very laid back, just
a happy person. All of a sudden, he was having a meltdown at school every single day. The
minute he came out the door to us, he was fine.
They recommended having him evaluated, and
I thought, why can’t the world just accept him
the way he is?
They told me he had Autism Spectrum dis-
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order. I remember saying: he’s autistic, that’s
for life, now what are we going to do? I had
to think about this in a constructive way, and
even though I was scared, one thing I thought
of was that he’s so much like my dad. My dad’s
a pretty good guy, so this is not the worst thing
that could happen.
ZOOM Autism through Many Lenses
When you do Unilateral Placement in New York
(and throughout the whole country, really) placing a child independently in a private, nonpublic-funded school, you have to prove that
nothing appropriate exists and that the school
you’ve chosen is appropriate. In Special Ed talk,
it’s called Prong 1 and Prong 2.
Prong 1 - “Is what he is being
offered appropriate for him?”
If the answer is no, you go to
Prong 2. In a case where you’re
suing, “Is where you have him
an appropriate setting?” If the
answer is yes to that, you’ve
got a pretty good case. We’ve
always had a pretty good case.
MP: You started Brooklyn
Special Needs Consulting in
the beginning of 2008. Why?
CAROL: A very close friend
of mine was diagnosed with
cancer the same week her son
was identified as “somewhere
on the spectrum-ish.” He
had been asked to leave his
preschool as my son had. She
called me up, told me about
her cancer and said there was
no way she could fight on both
fronts. I said, okay, I can’t deal
with the cancer. You do that,
and I’ll deal with his education.
I felt that even though I had
no experience advocating for
autistic kids, I would be better
than nothing, and what I found
out about three months in was
that there were lots of people
trying their darnedest to get
him services, and they weren’t
very effective. I seemed to be
able to get him services that
other people weren’t getting
and setting up meetings that
other people weren’t able to
get.
Once, I went to pick him up
while his mother was having a
medical procedure because his
bus had not yet been decided.
They hadn’t ponied up with a bus, which is such a basic thing. If
you don’t have a school bus to take you to school, then you literally do not have physical access to an education. So my son and I
went to his school (I was the emergency contact), and there I was,
holding the two little boys’ hands on the playground, listening to
this absurd assistance principal trying to bond with me over the
difficulty of getting a bus. He was saying, “Oh, it’s so impossible,
and I’ve been calling,” you know, casting himself as the hero.
And I just had it, and I said to him very loudly, “Yeah, it is a
shame that you can’t get the bus, and you know why it’s a shame?
It’s a shame because when this goes to due process, as I suspect
it will, somebody’s going to get flooded with phone calls. I don’t
think it will be the district, and I don’t think it will be the Office of
People Transportation. I think it’s going to be YOU. You’re going
ZOOM Autism through Many Lenses
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