Lion and Magic Boy

The other night was Eric’s Back to School Night, and I left there filled with love at seeing the unicorns drop from the teacher’s mouths as they spoke so eloquently and acceptingly of the children in Eric’s class, children who by the looks of the enormous array of equipment strewn about the classroom have an enormous array of special needs. For instance, putting things in perspective, the woman who sat next to me said she was unsure whether her daughter was allergic to all tree nuts or just to peanuts because she was tube-fed.

Oh! Well! That sort of ended that conversation. Because while Eric has all sorts of developmental delays as a result of Down syndrome and is somewhat fragile medically and maybe some things we don’t even know about, the phrase “tube-fed” just hasn’t entered our casual family vocabulary.

So while I left Eric’s school thinking lovingly of the unicorns, I also left thinking about the fight that’s on my hands, the uphill battle I am likely going to have to wage in order to ensure that Eric has what he needs.

Apparently, it all comes down to funding.

I’ll say right now that all my three kids who are involved in the school system have a wide spectrum of special needs, and in the past month I’ve been evaluating their respective situations to determine what course of action I need to take to go to bat for them to receive the best possible education, an experience tailored to their individual needs.

This should be possible. But it’s not going to be easy.

Nathaniel, on one part of the spectrum, is kind of maybe brilliant. He’s my kid and every parent of course thinks their kid is awesome in some way, but I know that Nathaniel is pretty smart. I was around kids like him through my own educational experiences, and I know what to look for. Hell, I was one of those kids. Right now he enjoys school but a lot of it is busy work for him. He has yet to receive any grade less than an A, and getting less than an A would likely be quite devastating, actually, as his expectations are high. But 5 years of Waldorf school with no actual grades has created in him a desire to really excel now that he’s in public school with grades attributed to everything. Wonderful. But soon he’ll be bored and I want him to continue to feel challenged. I’ve asked for him to be tested for the gifted program and I have little doubt that he’ll qualify, but I wonder if it will be enough. He’s told me already that he intends to skip 7th grade. I imagine it can be done, but there’s a fight ahead.

Serena is also quite brilliant in a whole different way, but she’s less disciplined than Nathaniel, doesn’t have his experience, and doesn’t yet read well. Reading isn’t expected in the Waldorf curriculum to really come together until sometime in the 3rd grade, when all of a sudden kids find themselves reading Harry Potter, so she was right on track Waldorf-wise but is the One Child Left Behind in the skewed world of public school. And this not-reading has put her at a disadvantage and has pigeon-holed her with her teacher, who thinks Serena just doesn’t quite get the work when really it’s about the reading and the distractions and the kids and the fact that everything is new. So I bought Serena some books she CAN read and in a month she’s gone from painfully and haltingly reading a few words to smoothly reading quite a lot of them, entire books full of them. I fully expect her, by Christmas, to be able to read about anything she wants to, but until then will have to fight off the well-meaning but stigmatizing reading help the school wants to offer by pulling her out of class and sending her with the other low achievers to get extra help that I don’t think she needs, at least not from the school.

Eric is, of course, Eric. Every year his educational goals are re-evaluated and new goals set. Fine. The report is called an IEP and his school then uses that in his daily rhythm to determine what his various therapies are like. That’s fine, too. The school district also uses this to determine exactly what “services” Eric will receive: how long a day of school, how many days per week, how much therapy, etc. Not fine, since it is the district that must provide the funding. In other words, they need to see a NEED in order to make any sort of change or increase. Eric’s new IEP will occur next month when he turns 4. Already his teacher and his therapists are totally on board with increasing the length of his school day and increasing his therapies, but I will likely have a fight on my hands to convince the district to fund it, and likely all because when he got put into the system they categorized him a certain way and woe to you if you suggest anythng otherwise. For instance, at this point, from the district’s viewpoint, Eric may never see a classroom of typical kids. Which is wrong.

And while I believe that parents should be their kids’ best advocates, the idea that it’s so difficult, that there are so many hoops to jump through and especially that kids get labeled early making it VERY difficult to later move out of that label, makes me very uncomfortable. Kids change and their needs change.

If only I could get someone to homeschool them all….

[tags]rants, public school, education, special needs, Down syndrome, pigeon-holing[/tags]