Thursday, October 11, 2012

His Good, or the Greater Good?

(Let's pretend it hasn't been at least six months, OK? Let's pretend I was just here yesterday. And let's pretend I've updated you on everything that's happened. Which isn't much. Just regular life. Busy, busy, regular life. So...moving on...)

N during summer vacation trip to Morro Bay. It was cold. It was great.
N's triennial IEP will be at the end of November or the beginning of December, depending on when everyone can make it.

I have a lot of concerns about what the evaluations will find this time around; I have even more concerns about which independent evaluations we should pay for and do. I have concerns about his transition to middle school. I have concerns about my concerns. I could go on, but I won't.

What I wanted to talk about here, to ask you all about--you being everyone, whether you have special needs, have a special needs kid, or just have an opinion--is just one of those concerns. The one about what I would like N to have from his school and his district in a perfect world, versus what I really have the 'right' to ask for in this very much imperfect world.

In short: Our school district is dying. There have been meetings every week about the increase in class sizes, the huge number of teachers (relatively speaking; this is a small district) who will be laid off, the 20 fewer days of school kids will attend next year and the year after that. This isn't about special education; it's a full-out, wholesale bloodbath.

Now, back to N. There are services he gets that are absolutely essential. If anyone even starts to talk about taking them away, I am going to scratch their eyes out. There are services he's not getting that he needs, like a reading intervention that will actually work for him. In that perfect world I've talked about, I would ask for a private school, because the dedicated professionals in public school still haven't quite reached him; because he's a sixth grader who still works way too hard to decode, much less really read; because he keeps testing at a third-grade level because he cannot both read and comprehend what he's read, and he certainly can't read, comprehend, and then make whatever comprehension he's acquired into the shapes of written or typed words and letters.

Frankly, though, I can't even imagine asking. Not now, not in this environment.

In fact, I wonder about whether we oughtn't be offering to let some things go, rather than insisting on more and more. There are, after all, one or two services the school provides that are great for him but, in reality, are not drop-dead critical. Not essential. Or, rather, things we could provide for him by paying out-of-pocket, or by taking on a weekly copayment.

Nobody has said anything to me, yet, about reducing his services. They may try to do so at this IEP; they may try to do it in ways that I'll object to. But I wonder if it's maybe a little bit my civic duty to offer to take on the things that I as a parent am able to do, am able to pay for. It's clearly better for all his services to go through one portal, for all his providers to be connected and to talk to one another and to advocate on his behalf together. But if the kids in gen ed--including Em--are going to get screwed (and they are, there's no other way to describe it), is it my duty at all to try to lighten the burden where I can? Would I be doing a disservice to my kid? Am I doing a disservice by not insisting on a special private school? Am I doing a disservice by not dumping every dollar I have as well as those I can borrow into figuring out what really would be the best way to educate him and/or paying for that education? Is it possible to NOT do a disservice to my kid? Is it possible to do this "right"? Because if there is, just tell me how that's done. I'd give anything to know how to do the right thing.

Shit. I'd give anything to just know what the right thing is.


Anonymous said...

Oh- nice to see you back. Will pretend along with you.

My daughter is dual exception and graduated h.s. in 2011. When I used to go to her 504 meetings I found that once you gave up a service, you will never, ever get it back. If it is not particularly helpful, and not likely to be key in the future, then I agree give it up.
Second, if I had it to do over again, I would pay more for outside services/opportunities. My D would have been a lot better off if we had pulled her out of school in 10th grade and let her dual enroll at college and take online classses. However, she was not disadvantaged too very much with us not making the choice, just in hindsight it would have been the best choice. Sounds to me though that Noah NEEDS somethings that public school is not going to do right. If I was in your shoes, and I could afford it, I would pay for interventions that truly will help him get to be the best he can be (within financial/time limitations and not disadvantaging Em).

TC said...

Chris, those are all very good points, especially the one about paying for interventions that I know will be better than those in the school. Now to figure out which those are... ;-)

Jan said...

I'm with Chris, in a way. I wouldn't offer to drop any services unless you don't think they're worth the time/effort (we gave up on OT because we didn't think the benefit was worth missing class time). I totally sympathize with--and comment--your considering your civic duty, but I think the school will take care of that stuff.

I also encourage you to pursue the private services if you can afford to (time and money), because they give you a better chance of tailoring to exactly what N needs.
My daughter (15, sophomore) didn't learn to read until we hired a private tutor (she came to school and worked with her every day during Language Arts for all of 5th grade), and frankly learned her math from a different tutor, after school, in 7th and 8th.
It's terribly sad that schools today don't do what our kids need, but the fact is that most of them don't, and while many kids can just adapt, some can't, and really suffer for it.
I don't know, this probably isn't much help, but know that you're not alone in this--both in the agony of the decision and the kicking yourself afterwards for not having the foresight to do what hindsight now tells you would have been the right thing.

Good luck.

TC said...

Jan, I totally love "kicking yourself afterwards for not having the foresight to do what hindsight now tells you would have been the right thing."

If that doesn't define parenting, nothing does! ;-)

Melanie said...

Is moving an option? And I do not ask that lightly. I live in a large city with excellent public schools. Good schools were our number one priority when choosing where to live. My children are the only ones on both sides of our family who attended public schools. They have gotten the best educations out of all of the nieces and nephews. If the schools here were falling apart, we would be packing our bags.

TC said...

We actually moved here for the schools, which are excellent, except for the whole running-out-of-money-in-California thing!

Anonymous said...

Is there an expert that you trust that could identify the best interventions?

Green said...

No. No, no, no. No. You are doing your civic duty by PAYING TAXES and SENDING YOUR KIDS TO SCHOOL EACH DAY (except when they're sick).

I was in my 30's before my mom sent me all the paperwork from IEP's and tests results from LIJ when I was a kid. And you know what I saw all over it? "The mother claims Green has learning disabilities, requests services. Denied" All that time I thought she agreed with the district that I was just a difficult and bratty kid who refused to try. It's so good to know that wasn't the case.

Let them worry about how to pay for N's services. YOU worry about your kid(s). The whole "the district is falling" simply can not be your problem now. Maybe for Em, or maybe in high school, or maybe in your next life. But not now.

Anonymous said...

I don't have kids with IEP's, and I worry about the issues that you're talking about at the global level (i.e. the interaction among kids with needs, some with legal rights, other not, that results in losses of days, increases of class size, losses of teachers for some kids but not necessarily others). But even while I worry about this at the policy making level, I would never advise an individual parent to give up rights/services they are entitled. The fact is that giving up some OT sessions (or whatever services) won't fix the system that's broken in CA. And, that's true even if in your local sense, someone tells you that giving up your OT services will free up time to pay an art teacher.

The system is broken, and participating in those duct tape fixes will at most have narrow, temporary benefits (next year, they'll take away the art teacher, too).

In your shoes, I would think about services that I don't think are helping (as others point out, it's not worth your time, even if the service is free) and find services you might think will help (even if you're entitled to them at school), if you can afford to pay. I wouldn't give up anything you are entitled to that benefit N.