Time to Get Rough

The first time I became aware that one was not simply the kind of person who was capable of doing something, but rather went through the process of doing it, from scratch, without any pre-determined capacity, and thus became a person who had done this and was now capable of it, and more, was when I was contemplating moving out of the dorm and renting an apartment with my friend for the second year of college. I can no longer relate to the feeling that renting an apartment walking distance from campus in cozy Hyde Park with my parents’ money was a personal challenge or an opportunity for growth, but I know that I did feel that way because I remember having an entirely earnest conversation about it in the courtyard behind the Reynolds Club.

That was ten years ago. A lot has changed.

Ruby’s education is complicated. We’re somewhat behind the curve in New York because she just entered the school system here, rather than having been on their radar and receiving therapy via the DOE throughout her early childhood. Before we moved, I visited our zoned public school. It does fairly well in testing and is noted to have good special education, so I had high hopes for a simple transition from a local public pre-K in Washington to a local public kindergarten in New York. But I visited and saw that the school is traditional to the point of being archaic, despite the smartboards that are leaned on heavily in every classroom, and it literally gave me nightmares. I dreamt that the children at recess didn’t know how to play, that the only thing they could do was draw a straight line in white chalk across the playground asphalt. The principal prided herself on how silent the halls and classrooms were. The school would have broken Ruby.

So I learned about the different options at various public schools and visited and applied to many that seemed better for Ruby. She made it to 324th place on the kindergarten wait list at my first choice school. But she got in to my second choice, a similarly well respected, sought after, and progressive school with a stated policy of inclusion and both integrated co-teaching (ICT) and self-contained special education classrooms.

I celebrated. Ruby had won the lottery, and would attend a good school that provides appropriate special education. I felt a weight lifted from my shoulders.

Then at her first IEP meeting, in November, the IEP coordinator (who is also the school psychologist) said that I should look at other schools for Ruby, because as school becomes more academic she may not receive as much individualized support as she needs and may not be able to keep up in the classroom.

This wasn’t what I wanted or expected to hear, even though I was absolutely aware that my sense that Ruby is doing well in kindergarten doesn’t mean she is doing what everybody else is doing in kindergarten, and even though I had already realized my disappointment in the fact that despite “inclusion,” Ruby is still THE SPECIAL KID. I’ve known for a long time that Ruby is far from average, but until now she was little enough that I could focus on supporting her speech development and not really worry about where she was academically compared to her same-age peers. Ruby’s IEP team basically told me, in a responsible and respectful way, that now it’s time to worry.

I filled with resistance and sadness. I mentioned to a friend that I was starting to consider sending Ruby to a special needs school, and she said, “But wouldn’t that feel like giving up?” Yes. It did feel like giving up, and I didn’t want to do it. In further conversations with members of the IEP team, I agreed that I should learn about the other options, but I also zeroed in on the fact that going to school with normally developing, normally communicative peers provides excellent language modelling for Ruby and she is learning a lot from them. And I pointed out that since the progressive kindergarten curriculum has been play based and centered on social and emotional development, first grade, in which the children are actually expected to do academic school work throughout the day, would be a better time to judge whether or not she can manage. I said I thought that pulling her out after kindergarten would be unnecessarily pre-emptive. The very reasonable people at school agreed.

Meanwhile, I’ve been trying to think about Ruby’s long-term future and how to plan for it financially. I’d always meant to start a 529 College Savings Plan for her, but then my father brought up the idea of a Special Needs Trust, and I found myself researching these two very divergent ways of imagining Ruby’s future. In the first, Ruby goes to college. In the second, Ruby is disabled to the point of not being able to support herself through work, and depends on SSI and Medicaid, and needs a Special Needs Trust so that if anybody leaves her money, that money does not disqualify her from receiving these benefits.

I don’t like needing to make a bet on this now, while she’s five. This concern, paired with the notion that things might not work out at Ruby’s current school, has brought a distracting voice into the back of my head that nags, and sometimes yells, “Ruby’s disabled! Ruby’s retarded! What are you going to do?”

I know that that’s a bad word. It’s a bad voice.

The first school I visited was another good public school using ICT, but it has children with more substantial special needs than the school Ruby’s at now. She would be less of an outlier there. The people I spoke to at the open house weren’t particularly inspiring though, and there’s no specialization in educating children with language disorders.

The second school I visited was a strong school for young people with mild to moderate cognitive and developmental disabilities and severe language disabilities. It goes through high school and offers vocational training for people up to age 21. Looking into a classroom, I saw children sitting in a circle with their teachers and aides and signing along to a song from Signing Time, the fun, musical DVDs that teach children American Sign Language. It was a song about families that Ruby and I know and love. The sense of recognition quickly brought tears to my eyes.

But then I realized that these kids were in fourth grade, and that the school, its intensity and devotion to children who need a lot of help, was wonderful but that it might be for children who are more disabled than Ruby. Envisioning Ruby in that fourth grade classroom was not a hope but a fear. I left the school feeling upset, and decided to redouble my efforts at being Ruby’s personal, round-the-clock speech therapist, occupational therapist, and reading and math specialist.

Yesterday I visited a tiny, young school for elementary school children with severe speech and language delays. The head of the school is trained as a speech pathologist, and my impression was that the mission of the school is to provide very intensive language support for young children whose speech and language problems are jeopardizing their ability to learn, in order to let them access education. By fourth grade, she said, all of the kids are conversational and they’re about 6 or 7 months behind grade level according to New York State standards of education.

I left the school feeling bizarrely energized. It’s private and year round, with six kids per class and a bazillion teachers and therapists, so it’s extraordinarily expensive. Any thought of pursuing this school means getting Ruby freshly assessed and evaluated and getting ready to petition or sue the DOE for funding. If you know me at all you know that this kind of massive bureaucratic deliciousness is just my cup of tea. Not.

Any of these schools, or another that I haven’t seen yet, might be the best place for Ruby (though I definitely have my favorite so far). My concern that such a specialized school would deprive Ruby of interactions with normally developed, normally communicative kids — that this is a very restrictive environment — still feels legitimate and serious, but doesn’t feel like an excuse not to really figure this out. Anybody who has laid eyes on Ruby knows that she is energetic and curious about the world and capable of learning a lot. Squeezing by at the tail end of an ICT class in her comfy, normal school probably isn’t what’s best in the long run. Sacrificing Ruby’s chance to learn in an environment truly tailored to her needs because leaving the regular school system makes her mom feel sad definitely isn’t what’s best.

Now it’s time for me to become the kind of person who gets down and dirty with the New York City DOE and finds her special needs daughter the kind of education she deserves. As these badass girl rockers say, if it gets rough it’s time to get rough.