April 4, 2011

The Season for Overbelieving


Travels with Jasper
Originally uploaded by Citizen Rob
Today, Schuyler began taking the TAKS test. (This is the Texas Assessment of Knowledge and Skills, our version of the No Child Left Behind nonsense.)

I've talked about this before.

If you want to know my feelings about kids with disabilities and standardized testing, follow that link and read what I wrote two years ago. I don't think my outlook has changed on this at all; indeed, they didn't change even after Schuyler passed part of the test.

It's a cliche, perhaps, but this week, I feel like my child is being left behind. At least she won't have a lot of homework. More time for self-esteem repair, I suppose. Since everyone involved in education is bitching about NCLB this time of year, I'll leave it at that.

I've sort of come to dread the spring as far as Schuyler's school experience is concerned. It's a one-two punch of TAKS testing (and all its accompanying anxiety) and the following meeting to discuss Schuyler's IEP for the following year. Last year, the school district's educational diagnostician asked for (and was denied) our permission to administer a new cognition measurement test (basically, an IQ test) to Schuyler. She even admitted, without hesitation, that she believed such a test would reveal Schuyler to fall within the range associated with mental retardation (or whatever she calls it now, post-Rosa's Law).

That wasn't a good IEP.

I wrote about this last year, in a post titled "Truth can be a monster, too", and looking back on it now, I think it was probably one of the more important things I've written publicly about Schuyler's academic situation. It certainly paints a more accurate picture than what I wrote in my book as I tried to look into her future.

At that time, I was talking about Schuyler being mainstreamed at an age-appropriate level and one day joining her typical classmates and graduating from high school with them. But all of that was a lie, albeit an unintentional one. Schuyler's inclusion was something of a Potemkin village, and we happily allowed ourselves to buy into the fiction for far too long. We believed what we wanted to believe, to our utter shame.

"Truth can be a monster, too" ended like this, with some of the hardest words I think I ever had to write, hardest of all because they might have been loaded with frustration and sadness, but they were fat with truth, too:

For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.

My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.

So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."

And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.

A year later, I'm not sure how much has changed. I never made peace with the idea that Schuyler might be MR, and in fact I believe more than ever that she is not. Am I overbelieving in her, as I also expressed last spring? Perhaps, but I still think that as her father and one of her two chief advocates, overbelieving in Schuyler is exactly appropriate. Furthermore, and this is where there is perhaps the potential for disagreement amongst the members of the IEP team, I believe that overbelieving is right and appropriate for every single teacher and therapist who works with her. Every single one of them. Period.

I've already met with someone who will, I hope, be key to some success for Schuyler. A couple of weeks ago, I picked her up from school and took her to meet the band director at her new middle school, and after evaluating Schuyler's abilities on a few different possible choices, it was decided that percussion will be the best choice. Schuyler the drummer girl. Just imagine it.

I like this band director; I'm hopeful that she will operate in a spot somewhere between the two extremes of "I have contest coming up, I don't have time to coddle a special ed student" (there's some of that out there, I'm sorry to say) on one hand, and on the other, a brand of "inclusion" that involves parking the kid with the disability in the corner with a chair and a rubber triangle. I think this director is going to be demanding of Schuyler and is going to help her learn how to focus. I think she's going to give Schuyler a chance. She might even overbelieve just a little.

At this year's IEP, we'll be changing Schuyler's team dramatically. This will be her last IEP meeting at the school that has, for all our recent disagreement, taken better care of Schuyler than most broken children ever experience. But after last year's attempt to stamp Schuyler as MR by the diagnostician, with the tacit agreement of other members of the team, there has been a serious divergence between the school's philosophy for Schuyler and ours.

Will that continue with next year's team? Or can we assemble a team of overbelievers, a group that will be less interested in trying to determine what Schuyler is incapable of doing and instead try to determine what she already knows and how to build from there?

I live in hope. As Shakespeare says, all men, I hope, live so.

22 comments:

  1. My general Big Opinion on IQ tests (as someone who gives them to kids for a living) is to ask a single question- will the results of the assessment give you any information that will help the team develop interventions? Sadly, in an educational setting, IQ results aren't usually used to inform instruction. If the results won't tell the school how best to teach her or give access to services she truly needs . . . well, do you need to know?

    If the results are purely being used to label, and in this case I get the feeling that's what they want, that's not helpful to anyone.

    Bottom line, keep asking how the IQ score will really help, because that's the most important goal.

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  2. I so agree with you and I will be working to get that IEP team of overbelievers too! If we don't overbelieve in our children, then how will we ever know what they are capable of?

    If I didn't overbelieve in my daughter, I never would have put a communication device in front of her. If I had continued to listen to the school tell me she can't do it she wouldn't be surprising me now with what she can do! Her device is life changing for her and never would have happened if I didn't overbelieve in her!

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  3. I remember reading your post from last year and it was so powerful and honest. I can't believe it's already been a year. I don't have anything to offer to you except that there are people out here listening and wishing the best for your family.

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  4. I am so excited for Schuyler to join the band. I hope it's a great experience for her.

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  5. It is very hard to come to terms with the fact your child's future won't be what you thought it would. However, if you can't make peace with this, you may find your daughter missing out on opportunities she could benefit from.

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  6. It is very hard to come to terms with the fact your child's future won't be what you thought it would. However, if you can't make peace with this, you may find your daughter missing out on opportunities she could benefit from.

    I don't mean this to sound rude, but I'm kind of calling bullshit on this. What opportunities is Schuyler going to miss out on by NOT being labelled as "retarded"?

    It sounds like a feel-good, embracing acceptance, "Welcome to Holland" kind of a thing to say. But in reality? It feels like the message is simply "Give up.". And as Schuyler is only eleven years old, we are not even remotely ready to do that. Shame on us if we did.

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  7. It is a really hard job, believing against all odds, that life will be easier in the future. That there is more that lies within our silent children, than can be seen or measured. To hope, when hurting hopes so damn much. It is especially hard at this point in our children's lives, (the point where cuteness, and "pliability" start to fade) to find anyone on the "outside" willing to stretch enough, to try, much less OVER believe. I really hope you find it, on both accounts.

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  8. Anonymous9:24 PM

    overbelieving in Schuyler is exactly appropriate

    Hell yes.

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  9. God, I can just the hope and tenacity through the screen. There's one more person in the universe pulling for your little drummer girl, whatever that may be worth.

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  10. It's about 12 hours until our IEP meeting, in which I will be fighting for more inclusion for my extremely apraxic girl. Here's hoping that overbelieving will pay off.

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  11. I like the idea of overbelieving in our kids. Amen!! I am also excited to read about Schuyler's experiences in the band. I hope it brings her a lot of joy and success!!

    Carrie T.

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  12. As the father of a boy who has NO MEASURABLE IQ, I don't see your approach as over-believing but rather as defining, reassessing and again defining. You are writing the book of guidance for your daughter since no one else can. There are as yet, no experts in my opinion, perhaps there never will be.
    If your "over-believing" is motivated by a need for certainty, you will (continue) to be disappointed. Professionals have yardsticks to measure your daughter by, while you measure her by something else entirely. Where they cannot see the intrinsic value of your daughter because of a systematic approach, your view of her is more all-inclusive; this is a disparity which will never be bridged.

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  13. IQ tests measure disability, not ability. I used to loathe state testing too, until I realized that those scores are the only measures that demonstrate how well/lousy your child measures up academically to her grade-level peers. I use these state scores to demonstrate how well/lousy the SCHOOL is performing, not my child.

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  14. Anonymous10:07 AM

    I am an adult with a high IQ but substantial deficits in executive functioning especially as well as a few other areas. My doctor set me up with a neuropsychologist twice in five years, where each time I did eight hours of testing using many different tests, an IQ test being only one small part. The results were illuminating & helped explain why I was having very troubling problems. Insurance paid for a healthy chunk of each day.

    Could you have Schuyler do this privately, away from the school system & their test administrators & their desire to just pin an IQ number on her, so her real strengths & weaknesses could be evaluated -- more comprehensively -- by a neutral party?

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  15. 'My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.'

    that sentence really struck me, Rob. it applies to some difficult areas of my own life.

    Kim in AK

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  16. Telling Schuyler that despite "Polly", she should reach for what she wants (and believing yourself that she can do it) doesn't like good "special-needs" parenting as it just sounds like good parenting.

    For me anyway, it's also a little bit about self-preservation. I can't stop trying to push him beyond the limits that someone else set for him and let him slip away into a lonely and bleak future (God...just writing that made me feel panicky). I *have* to believe that he's going to make his way in the world and be happy or I'll lose my f**king mind.

    In short: Go, Rob. Me, too.

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  17. I have worked as a Special Ed teacher and I now have a son with multiple disabilities. I have found that some people are desperate to label a child with something--usually to explain why there's been a failure to get through. I've seen schools try to label kids as MR when their test scores clearly show that they aren't. I've also seen kids with the lowest possible "normal" score who far surpass their peers. Really, if a child is already receiving services, than I see so reason to pursue testing other than for the sake of morbid curiosity.

    I, too, have moved away from that picture of "everything is going to be fine." And now find myself living in a different place--one where it is fine right now and the future will be what it will be. I don't have a crystal ball, I don't know what my son will accomplish, and really, that's OK. We are happy as a family and what the world thinks of his specific disabilities is something that breaks my heart once or twice a year, but other than that, I let it go.

    I don't work with anyone who doesn't believe in my kid and I make that clear at the very beginning. If they can't hem in their negativity, then I make no bones about alerting higher-ups. In the end, they are their to serve our children and as parents we need to decide what that will look like.

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  18. We have a lot of the same thoughts! I just told the members of the IEP meeting at my son's ARD on Thursday that they needed to raise the bar and expect more from him. He's only going to perform to the the level that they expect. If we don't raise the bar, we're failing him. If you expect him to not know anything he won't. If you expect the moon, he just might hand it to you on a silver platter!

    Constantly over-believing in our children is tough. Sometimes I don't want to fight the battle. But just like I asked his diagnostician and teacher last week, why does my son know what segregation is at age 3? It has to stop. And over-believing is the only way I know how to get through sometimes.

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  19. "Really, if a child is already receiving services, than I see so reason to pursue testing other than for the sake of morbid curiosity."

    Katy, you hit exactly what I was trying to say in three paragraphs with one sentence. Well said!

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  20. I allowed an IQ assessment on my then 4.5 year old daughter to assist the psychologist she was seeing in developing a plan to help with her behavior issues. I knew it would not be shared with the school district unless I authorized that. Then she was re-tested at age 6 by our local ESD (they do testing on behalf of the school districts in our area) and was found to be a whopping 20 points lower on the bell curve! Needless to say I went through the roof at that. I only allowed the ESD assessment because I thought it would be pretty much in the same range as the other one, thus affirming roughly where I predicted she was cognitively. That was a lesson for me and now I will refuse any subsequent IQ testing unless absolutely convinced that it would benefit her and inform her instruction.

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  21. I come to this from a different angle, having been a child with a chronic illness and disability and being consistently underestimated by whoever was in a position of power. Teachers, doctors, etc. My parents, on the other hand, overbelieved in me and it is thanks to them that I have the life I have. Continue overbelieving. Schuyler may not win a Pulitzer, but your belief in her will help her break free of the bonds of being underestimated by those who would like to put her in a convenient little box.

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  22. Anonymous6:40 PM

    I would only say that there are some services as an adult that Schuyler will not be eligible for without the intellectual disability label. I'm watching it now, having had two students with learning disability labels in my functional life skills classes, and another student about to graduate with a similar diploma. There is very, very little job or living support for students with "just" an LD because of budget cuts. We tried relabeling one student as multiple disabilities because he has a communication impairment and is legally blind in one eye with no luck. This child could go places if he had the out of school support---but once they are 22 in my state, they do not have any school-based services now. State services are one person for the entire county, and you have to be able to really advocate for yourself in order to get the supports. It drives me nuts that the choices are a label that shuts doors because of the attitudes of some people or no label, and shutting the doors because of legality and budgets.

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