Wednesday, January 17, 2007

Santa, the Tooth Fairy, and FAPE

It’s the time of year when parents in New Orleans start the mad dash for a school for our kids. At schools across the city, parents are lining up to submit forms, pay application fees, and cash in any favors owed us by a friend of a friend of the admission director at the local public charter. This morning Mr. N and I were amongst them, crowding with other parents into a pre-K classroom to observe the lucky winners of last year’s lottery as they stacked blocks and read The Very Hungry Caterpillar. This was one of four observation days at the school. Today, there were probably fifty families represented. How many spots are up for grabs? What happens to the rest of us?

I ran into a former coworker whose son is close in age to Susan, and we compared which schools we were applying to for Pre-K. They’re looking at French immersion programs; I’m leaning towards Catholic or Episcopal schools in my neighborhood. The public charter is a best-case scenario. If you win the lottery and get in for Pre-K, your kid can stay in the charter school for the remainder of his education. This could save you tens of thousands of dollars over the next decade and a half. Plus, if you have younger children, they automatically get admission to the same school. Since private schools are typically $600/month per child, getting into the public charter is literally the deciding factor in whether to stay in New Orleans or move elsewhere.

What about our legal right to a Free and Appropriate Public Education? It’s the tooth fairy. It’s Santa Claus. It’s something we all believe in, in principle at least, but know we can’t count on. There is simply nothing available. The school board’s cupboard is bare.

When you add special needs into this already sad situation, it becomes desolate. Technically, public schools can’t turn away kids for having special needs. In reality, there are only so many spaces in a given classroom. Susan had her IEP evaluation two months before she turned three. At three, the services she previously received from the state – physical, occupational, and speech therapy – were cut off, because at that point the school board is supposed to take over. Since then, the only therapy she gets has been what we can pay for out of pocket, and our pockets are running very thin right now. Health insurance doesn’t cover long-term therapy, precisely because it’s generally provided by the state.

Her IEP says Susan should be getting therapy and special education and all sorts of wonderful services that she would certainly get if we lived anywhere else. I could take up a legal fight, and try to get reimbursed for some of the cost of private school and therapy. I know that by law I’d be in the right. But setting my faith in the legal system feels like chasing the Easter Bunny to try and get what Santa didn’t give me. More importantly, there’s only so much time and energy I have to spend fighting the school board, when I still have to find (and find a way to pay for) a decent education for my daughter.

Tuesday, January 16, 2007

If I had to do it all again...

A new blog titled The Preemie Experiment has gotten some posters on the Preemie-L list riled up for acknowledging that 1) preemies tend to have long-term problems and 2) caring for them is hard. Oh boo - mean old bloggers making people sad by acknowledging the truth. Whatever is the world coming to?

OK, it's widely known that I'm a big old bitch, but I've always found the Preemie-L list way too "speshul" for me. Oh God, the angel babies... the emoticons... you need an insulin drip along with the DSL line.

Like the author of the aforementioned blog, I don't want to have more children. Part of me wishes that Susan could have a sibling, but I can't face another pregnancy. It is not highly likely that I would have complications again. There is, however, some increased risk of another case of pre-eclampsia, another genetic mutation, and another prematurity. When I think of how easily it all could have gone so much worse - either losing Susan or her having profound disabilities - I can't imagine facing that possibility again.

With Susan, I had no idea what I was getting into, so I had no opportunity to bail out. I was low risk, so I had no prenatal testing. If I had tested, we would probably have learned about some of the problems in time to terminate. What an awful thought, right? In all honesty, I know that it's what we most likely would have done, for the same reasons I'm avoiding future pregnancies altogether. I never want to have to make that choice.

When the shit hit the fan in my pregnancy, DH and I discussed contingency plans with my O.B. A dear friend of ours had recently lost a child, our godson, after three years of pure hell due to his massive disabilities. We didn't want to go through what they had - it cost them their jobs, home, and marriage - and most importantly we didn't want our baby to suffer. (Our godson was not a preemie. He just had a different form of plain old bad luck.)

It obviously made the O.B. uncomfortable, but we wanted it to be very clear that if she was not going to have any quality of life, we did not want heroic lifesaving measures taken. The docs quietly reassured us that if we did get to such a point, where she was suffering had had no chance of meaningful recovery, there would be no legal battle to stop aggressive treatment. These decisions are made in hospitals all the time. There's just no public notice, nobody sends out a press release. It's just a quiet understanding between doctor and patient. Our doctors emphasized that we were a long way from making that choice, and fortunately we never got there.

Susan was one of the 2% of babies born under 1 pound who did not have any brain bleeds. She didn't have any significant heart, lung, or gut problems. No ROP. She was just small, and she still is. When she was getting close to discharge from the NICU, I spent some time reading over her chart - which had grown to two thick binders full of records. On the doctor's intake notes from the night she was born, there was a brief notation that once she was stabilized, they would wait 48 hours and observe before deciding on an ongoing course of treatment. The neo never said so to me, but I know that he had the same worries as I did, and if push had come to shove he'd have been with us, whatever course we decided to take.