Sunday, November 27, 2011

Nobody noticed

LAB’s comment on a recent post seemed worthy of a post of its own:
I have a child with ASD, and this kind of nonsense is the cornerstone of special education in the public schools. Teachers and aides are breathing down the necks of special ed kids in this country, making sure they don’t “disrupt” or do something unusual. Now the schools have expanded on this idea, called it “PBIS,” and are applying these ABA-style reward/punishment behavior modifications to all students. Nobody noticed when special ed kids were being treated this way for years, but now that the icky approach used to keep them in line is being used with all kids, some people are sitting up to take notice. Thank god! So-called “positive behavior supports” are simply threats and punishments dressed up as lessons of respect and harmony. We fought for positive behavior supports for our son (as opposed to outright punishment) in public school...until we actually saw what this entailed. It’s just another way to punish kids for being less than perfect. Worst of all is that, for something like PBIS (or any ABA or reward/punishment system), it matters who is doing the punishing and the rewarding. It’s often random, at the whim or mood of the teacher or lunchroom aide, or something the same “good” kids benefit from and the same “bad” kids suffer at the hands of. You are describing our public school exactly when you say they have become obsessed with monitoring every aspect of the students’ behavior. Pure hell for both my kids. We pulled them out.
I think this comment raises some good questions. I hear about what goes on in the special ed classrooms in our elementary school, and I recognize a lot of the things I’ve been writing about on this site – except taken to an even greater extreme. I haven’t written about it here, though – not because I haven’t noticed it, but because I don’t feel sufficiently informed to make a judgment about what kids in special education need. I can’t be sure what I’d do, or what I’d want, if I were in those parents’ shoes, so it seems presumptuous to express a strong opinion about it. But I’ve wondered whether that means that I’m turning a blind eye to the treatment of kids in special ed – passively deferring to “expertise” in ways that I never would for kids in general education classrooms. How should parents like me think about our schools’ special education practices?


LAB said...

The standard approach used with kids on the autism spectrum is ABA (applied behavior analysis), which is backed up by research and evidence. Parents will definitely hear from the school that this "works" and is therefore the way to go. I don't doubt that for some kids it is helpful and beneficial. However, I would argue that something this direct and intense should be handled by a professional, and should not be the domain of a neighborhood mom doing a $15,000-a-year teacher's aide job for the school district.

Many special ed kids spend entire days under the guidance of an "aide," and this aide, while apparently required to have some kind of training for the position, generally does not have an education degree or any kind of certification in ABA or autism. Allowing this person to provide a very specific educational "treatment" is risky. It's kind of like letting the receptionist at your doctor's office biopsy your worrisome skin lesion. Does she know what she's doing? Is she going to hurt you when she slices that thing out? Will your results be reliable? Where's the doctor?

Like general education, special education is a one-size-fits-all deal, no matter how much the school tries to tell you that your child's plan is "individualized." Kids have certain issues, and the school has certain approaches to those issues. They lump kids with "close enough" issues together and call it a "program." Most ASD kids mainstreamed into general ed are encouraged to participate appropriately via ABA-style reward/punishment systems. You did three good things, you get your cookie. Or, even worse, you did three bad things, you don't get your cookie. As far as I can tell, PBIS is this kind of thing applied to all students.

The hardest thing for a special education student, at least from my experience, is that he easily becomes a scapegoat for every classroom issue. If the teacher can't control her classroom, and the kids, including the special ed kids, are going bonkers, it's the special ed kids who are routinely removed from the classroom and taken somewhere else to calm down. Because they are "identified" with some kind of disability, they can be pulled out of class again and again all day. The aide is often the person taking care of this. If she's having a bad day or if she hates working with your child, you can bet your child will be pulled out of class plenty, and punished regularly as well.

There have been a ton of stories in the news lately of autistic kids being beaten/abused by staff in schools or on busses. I think this kind of thing happens way more than you would ever want to believe. And all this PBIS stuff opens the door for even more children to be abused in school--emotionally if not physically. The schools are setting a bar for behavioral expectations, but has anybody bothered to ask why? Was it so bad before? Is there a reason schools are becoming more prison-like? What about all the anti-bullying campaigns? Isn't a cafeteria aide blowing a loud whistle while little schoolchildren are trying to socialize and eat lunch the biggest bully in the room?

Doris said...

Hi, LAB,

Your original comment and the follow-up post are really insightful. Much of what you say resonates with my own experiences of raising a child who received special education services in public school until we, too, grew disillusioned/weary and "pulled" her out. Your discussion of the (mis)use of aides is especially interesting. I don't have time to go into that topic just now, but I'm wondering what type of alternative schooling you tried instead--private school? home school? And has that worked better?

Chris said...

LAB -- Thanks again for the comment. Those are great questions, and I'd sure like to know the answers. One characteristic of authoritarian models of discipline is a faith that kids learn how to act primarily through instruction (or, worse, through rewards and punishments), and not through modeling -- that is, from what the school says, not what it does. I think the opposite is true, and I'm worried about what this school is modeling about how to treat other people.

FedUpMom said...

LAB, your comments are fascinating to me. My younger daughter had behavior problems last year, and the school's proposed solution was that we should apply for a 1:1 aide to follow her around all day and pull her out of the classroom if she was being disruptive. Your comments are really helping to clarify my gut feeling that this was the wrong path for her.

We pulled our daughter out of that school and she is now attending our local public school. The year is almost 1/2 over, and she hasn't shown any disruptive behavior yet.

Chris said...

LAB – From what I hear second-hand, your description of how the aides in the special ed classrooms are micromanaging the kids’ every move is pretty true. (“Do it this way. No, don’t do that. Don’t do that. No, like this,” etc., constantly.) I don’t know anything about how good our school’s aides are at their jobs, but I think your statements about their minimum qualifications are essentially accurate.

If I were the parent of a child with special educational needs, I would be, at the very least, very conflicted about entrusting my child to a program like the ones you’re describing. I would find it very hard to watch my child being treated in a way that seemed, on its face, so intrusive and dehumanizing, and still maintain faith that it was all necessary for the child’s long-term benefit. The fact that everyone asserts that the treatment is “backed up by research and evidence” would be of little comfort to me, given the other things we’ve seen lauded as evidence-based. I would sure want to know exactly how the empirical studies defined “success,” and exactly what long-term effects they did and did not measure. And, as you point out, even a good program still needs to be properly executed.

On the other hand, the risks of departing from the conventional wisdom and going one’s own way seem pretty scary, when your child’s well-being hangs in the balance. And there are a lot of parents who swear by those programs. Yet there are parents, and “experts,” who swear by lots of things that I would never want for my kids. Scratch the surface of many “empirical” debates and you find that they come down to value disagreements in the end. In that climate, making decisions that affect your kids is difficult and scary – that’s true for all parents, but I think it must be especially true for parents of kids with special needs.

Doris said...

I think you pretty much nailed it, Chris.

All parents worry about messing up, but the stakes feel so much higher when you don't perceive that your child is developing in a way that makes it likely he or she will be able to live a fully independent life.

Is it wrong if you don't do everything in your power to try to help them develop skills that might enable them to live independently--even if you perceive that going this route has an extremely detrimental impact on the quality of your life and your child's life in the present?

One issue that needs to be explored is the way you can get sucked in, as a parent, by the "carrot" that if you push and prod and poke your child--subject them to a constant round of intensive therapies and drills and remedial work and whatnot--eventually they'll "catch up" or otherwise function more like a typical child. I can't even begin to describe the kind of work we ourselves put in as parents--the trips to specialists, the various exercises, etc. And we constantly felt guilty for the stuff we didn't do ("Maybe had we done more OT she'd be able to tie her shoelaces by now . . . .").

Then one day you wake up and realize that you have a child who is being made miserable by all this intervention, and that you, too, are not enjoying parenting because you have been taught to feel that your role is to squeeze every ounce of potential out of this child. We don't try to squeeze every ounce of potential out of our typical child, after all. Indeed, parents who do that sort of thing are the stuff of evil "Tiger Mom" stereotypes. So what makes it OK to implement a regime of Tiger Parenting vis-a-vis non-typical children?

In the end, I think you are right in your perception that what often gets squelched for parents of special-needs children is the ability to incorporate our own values into our parenting practices. The experts infiltrate your life so quickly, and you are so fearful and worried about the future, that it can be very, very difficult to resist what they are telling you that they think you need to do.

Anonymous said...

The earth is still flat, is it?

LAB said...

I dropped the ball on this comment thread and I'm sorry.

One thing public schools, and special education programs in particular, are supposed to do is find the root of a student's behavior problems. In our school this was never done, or was done only after parental intervention. Any child with behavior problems--even a mild issue, like inattention to task--would be punished over and over again, all year, if the parent didn't step up to say, "Can we investigate and find out the 'why' before we try blanket punishments?" Not that speaking up solved the problem in our particular school, but at least it gave my kids a fighting chance (although you do open yourself up to new problems, like having your child targeted by the teacher angered by your criticism). But I was heartbroken watching other students whose parents were not intervening, either because they had no idea their child was the teacher's punching bag, or because they supported the methods and thought their child needed a little straightening out. I worried that some of those kids were being punished in school, then being punished again at home for having been punished in school. The schools are laying the groundwork, unfortunately, for situations like that.

Doris is exactly right when she points out that special needs kids (and their parents) are often held to a higher standard. When my son struggled to socialize, his major IEP goals were built around making him play with other children and forcing him to interact appropriately. We supported this completely, thinking it was the right thing to do, and thinking that our son needed to make this kind of progress or he would never develop the skills needed to survive in a social world. What we learned is that you can't force someone to have friends and you can't force someone to interact. Children understand that they are socializing by force, and their classmates see this as well. So is the child developing real "social skills" via this force? No, he is not. He is instead singled out among his classmates as the kid who doesn't have any friends. That's not a recipe for social success. And who gets to define "social skills" anyway? Why is, say, a gossipy "popular" child, talking to everybody, nose in all the business, considered "right"? Why is my child--quiet, reading, "in his own world," not bothering anybody--targeted for intervention and correction?

Doris is spot on when she says a parent may one day wake up to realize his child is being made miserable by "interventions." My son is in a Montessori school now and everything (except our bank account) is better. My son's behavior problems disappeared overnight after we left the public school, and he has done nothing but shine in this new setting. At a certain point you just want your child, especially one who has been dragged around by his arm in school for several years, to simply be happy in an educational setting. It was a radical choice in some ways, leaving a public school with special education services for a private school without. But radical is what we needed and it worked.

When "positive behavior supports" in special education are really just methods of behavior management, how are they helping my child to learn and grown? And I'd say the same for PBIS in general. Some educators may claim PBIS is all about teaching kids to be good citizens, but once you get their definition of "good" and "citizen," you see the real picture. It's about shutting up, sitting down, and doing what everybody else is doing. It has nothing to do with the individual children and their education.

FedUpMom said...

LAB, yes yes YES! There is so much in your comment that I have experienced myself.

Entrenched behavior problems disappearing after a change of school -- check.

Misguided advice from "professionals" -- check.

Wanting to see my child happy in school -- so true for both kids (and not easily attained.)

It's about shutting up, sitting down, and doing what everybody else is doing.

Yep. That's about 80% of school these days. The other 20% is test scores.