Beyond Salomé and the kids’ birthdays and our wedding anniversary, I’m not very good at remembering specific dates, but 5/3/2005 will always be a memorable one because that’s the day India was diagnosed with autism*. “Pervasive Developmental Disorder-Not Otherwise Specified” (PDD-NOS), to be specific, the catch-all term for a laundry list of autism-related and autism-like disorders that, I think, is part of the reason for the recent explosion in autism diagnoses over the past 10 years or so.
It’s been a long two years for us since the, full of emotional highs and lows, but overall, she’s come a long way thanks to early intervention and the educational services she’s received, and as important as anything else, Isaac, the most patient and caring brother I’ve ever seen or heard of in my life. He’s been a brother, a friend and a teacher/mentor to her and I honestly don’t think she’d have progressed half as far or as fast as she has if not for him.
This morning we had our meeting to hear what the Committee for Special Education had recommended for her for this fall as she’s aging out of pre-K and into Kindergarten, and we make the move from a relatively supportive system that attempts to help as many kids as possible, to one that nickels and dimes kids and narrowly categorizes them, leaving way too many to fall between the cracks. According to her evaluation, she’s within the “non autistic range of functioning” (CARS: Childhood Autism Rating Scale), but “A general education program without related services would not address India’s needs at this time.” and “A special class in a community school is too restrictive at this time.”
Cracks, meet India.
The good news is that she’s no longer considered autistic, and honestly, I never thought she was but the diagnosis meant she got the services she probably wouldn’t have otherwise if she’d simply been thought to have the speech impairment she’s now labeled with. The bad news, though, is that the autistic label was the only thing that would keep her out of the general education setting they initially recommended, and allow her to go into a program more suitable to her special needs. That’s the problem with standardized scores of any type, is that they’re very black-and-white, and in this case, her CARS score overshadowed all of the specifics in the two evaluation reports in her file that are pretty explicit about her having special needs.
“A general education program without related services would not address India’s needs at this time.”
I mean, it’s right there in the report, and yet they were still recommending general ed! We argued against it and got them to change the recommendation to say that her needs can be met by a general education teacher AND a special education teacher, together, and after some discussion of our options, it’s pretty clear that we’re not going to find what she needs within the public school system. That means a possible court fight to get them to pay for a non-public school setting, which is exactly what we were prepared for, and even without the autism label, we have a pretty good shot at getting what we want. It helps that Salomé is a teacher now and knows the system, which should cut through the first layer of bullshit they typically throw at parents.
What started out as a rather anxious morning turned into a pleasant afternoon as we investigated one of our options — a promising one that’s actually within the public school system, and in the Bronx, but is relatively brand new and funded by NYU — and then spent an hour walking around Arthur Avenue, the Bronx’ Little Italy, talking through everything and, consciously or not, decompressing. I ate a half-dozen raw oysters at a “raw bar” counter that was set up outside one of the seafood shops (one of two doing so), and we stopped at a bakery for dessert and one of the strongest double espressos I’ve ever had. It’s a nice little neighborhood with what looks like some good restaurants that we plan to go back and check out one of these days.
All in all, a rather big day for us in the grand scheme of things, as it represents a positive half-step forward towards figuring our plan for the next few years.
* “With autism” vs. “as autistic”, as my opinion has changed greatly over these past two years. I used to think the diagnosis defined the patient, but have come to understand that it is simply one aspect of who they are. No one is “a cancer”, they “have” cancer.
