Saturday, March 03, 2007

IEPs are like Indian Trains

Dealing with school personnel is like trying to change your reservation on a first-class coach in India.

When I was India, I was scheduled to stop in Bodhgaya. I had made my reservation some months before, when putting together my trip, and had no idea the monsoon would be late, and that it would be unusually fierce, and that the entire region would be flooded. So I decided it woul dbe safer just to continue through to Varanasi, and skip the water-logged city. According to my literature, the thing to do was to go to the India Rail office in Calcutta, change the reservation, and then all would be well, since I had an Indrail Pass- a fancy ticket that allows you to ride any Indian train for free, because you paid more money for it than most Indians make in a year. It is a very common way for westerners to get around.

So I obediently trekked over to the India Rail office, stood patiently in line for two hours, and finally got in to see the folks who deal with reservations, and calmly and politely explained that I no longer wanted to get off the train at Bodhgaya; I wanted to go through to Varanasi, and needed to change my reservation. I was promptly told that since I had an IndRail Pass, I just needed to tell the conductor that I no longer wished to stop at Bodhgaya, but that I wanted to continue to Varanasi. No problem.

So a few days later, in the pouring rain, I boarded the train and when the conductor came to check my ticket, I told him I no longer wished to get off the train at Bodhgaya, I wanted to continue to Varanasi. The conductor frowned, shook his head, and said since my reservation was only to Bodhgaya, I had to get off at Bodhgaya. He had no room for me beyond that.

I told him what the people in the office said. I showed him the little book that cam ewith the IndRail Pass that said I could go anywhere with the ticket. I offered to take a "seat" in second class (that's the art of the train most folks think of, with the people hanging out the doors and windows). But no, I my reservation was for Bodhgaya, I had to get off at Bodhgaya. Knowing that it was now very, very dangerous to get off at Bodhgaya (riots had started there in the days between my trip to the India Rail Office and the day I set foot on the train), I knew I couldn't budge; I had to be found a seat. I had to yell, cry, and raise a general fuss. I stomped my feet, told him he would need to be calling the police in Bodhgaya to get me off that train. I wasn't getting off. I had an IndRail Pass, and I was going to Varanasi, and had been told it was not only possible, but that this was the right way to do it, and I wasn't going to leave the train, if I had to stand the extra four hours to Varanasi in the aisle, or even the bathroom (and if you've ever seen a bathroom on an India Rail train, you know how ugly this got.) In teh end, he found me a seat on another car shortly before the train was to pull in to Bodhgaya.

That's when I realized that the peoplein Calcutta had counted on me doing exactly what I had done- throw a tantrum. They didn't have to do any actual work, and the western woman would scream and stomp until she got her way anyway, so why bother?

Unless you scream, yell, and threaten legal action, the school doesn't care. They don't even try to sound like they care. The OT was very clear: she is only legaly obligated to provide "educational service." The fact that I was asking for "educational service" be damned; she was only required to provide so much service, and by God, that was all she was going to provide. So now I am in the middle of having to have a tantrum, so that my Joey will get the service he needs.

I hate throwing tantrums. It would be so much nicer if IEP teams did what they were supposed to do- determine what a child needs. That it what the IEP meeting is supposed to do- not to ask if there is funding available, but to determine what is needed. But that is never what happens. Instead, if any money needs to be spent, it is "out of the scope of an IEP" or they start talking about medical rather than educational service. Like they aren't providing medical service... but it's irrelevant, because I am asking for educational service.


From the depths of post-IEP hell

Something for my admins to read:

Monday, February 26, 2007

Mr. Rogers

Toss out the fad parenting books. Dump those "raising your kids better than your mom raised you" idiots. What has been the most helpful for me raising my guys?

Mr. Rogers.

We have the glories of TiVO. My husband insisted on it. Not being a TV fan, I didn't really care- now I'm a very happy peson. I have taken to having Mr. Rogers going while Joey is in therapy. It is not only incredibly calming, but a wonderful way to get language to use for talking to your kids. We talk all the time about giving Joey language to use. I think we forget that, not having raised kids before, we need language, too. Here is a wealth of language- talking about making things, and emotions, and people, and all sorts of stuff that is important to kids just Joey's age.

One thing about faddy books, they don't work for kids with autism. Fad "discipline" and the latest modes for getting kids to do what the parents want them to do just aren't very helpful for a child who is on the edge of not even hearing you. Timeouts make no sense. Bargains have no meaning. With Mr. Rogers, you have positive and proactive ways of helping a child, because Mr. Rogers always keeps in mind that children are people. Behaviors have reasons. A child isn't screaming or crying just to annoy you. Here is a whole daily program about considering what a child's world looks like, feels like, how it works and doesn' work, and how to talk about what is happening- in simple, clear language, just like you need for an autistic child, or any child.

What would Mr. Rogers say about raising a disabled child? "Well... he's still a child, right?"