Zoom Autism Magazine Issue 9 | Page 26

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- 26 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 27