Monday, September 20, 2010

Why I Can't Breathe Tonight

Anonymous Special Needs Professional

Recently I read a post on The Thinking Person's Guide to Autism blog by a parent named Pia Prenevost. It was called An Open Letter to Special Needs Professionals. The title made me feel a bit guarded at first (as a special needs professional), because my experience with Ye Olde Internets is that "an open letter" usually warns that a negative letter, a warning to the recipient of the “Oh, no, you di’n’t” variety, is coming. But that was incorrect, because in reality the author had written a lovely, heartfelt post about the vulnerability a parent of a child with special needs feels. I encourage you to read it, it's beautiful. Here's an excerpt:
“I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.”
I appreciated the beauty and truth of her words. I will share it with parents I work with, happily. And at the same time it made me feel a bit hopeless as a professional, like there is really nothing I can do or say that might help a parent, even though I'm certain that wasn't the intent.

Later I came to find out that some teachers and therapists had commented on the post in anger. I read their responses with interest, because what they were writing had precious little to do with anything Ms. Prenevost had actually written; instead they had responded with their own raw emotion. It was as if they were arguing a completely different post or person, but their emotions were just as high.
Reading those comments from a few professionals left me short of breath. I have felt on the verge of a panic attack for the past two hours, and I've never had a panic attack. I couldn't concentrate on reading with my boys, or putting them to bed, I was so preoccupied.

Why? Where am I? I am, in my mind, back in a long-ago job, which was in a small, well-regarded public school district. A place where I was respected among my colleagues but clearly believed to be an idiot until proven capable to parents, assumed to know far less than my counterparts in private practice. Having come from a private practice job, I had suddenly been demoted to second-class citizen among my clients' parents because I was working in the schools. I can still see their suspicious expressions at my first Open House. It was an astonishing experience, and I never forget it when I walk into a public school meeting as a private therapist. Some therapists are better than others, whether they are in public school or private practice. "You get what you pay for" does not always apply.

Ninety-five percent of the parents I worked with were wonderful, once I had proved myself to them, and that didn't take long. I knew what I was doing. It didn't matter how significant their child's needs were, most of them were partners with us, their child's team. We were a very strong team. They were considerate, polite, and respectful. So were we. That didn't mean we always agreed, but we had the good relationship required to work things out when we didn't see eye-to-eye. 

But the other five percent? Well, tonight I'd say I suffered some trauma at the hands of that five percent, because more than ten years later I am short of breath just thinking about them. 

My colleagues and I were treated very badly. Certain of those parents visited me in bad dreams for as long as five years after I left that job. I was scoffed at in meetings by special education attorneys and expensive "experts" (put in quotes because the most frequent of these was later discredited) flown in from across the country (the school district having been required to pay airfare and hotel bills for these visits on behalf of families). My clinical insights were dismissed by that small group of parents, because to acknowledge that the school team had any insight whatsoever would weaken the "case."

The stress that was caused by a few families affected a great many of us: therapists, teacher, principal, administrators. It was out of hand and inappropriate. The kids didn’t benefit; after all, their parents and special educators were at odds and all adults in their lives were under a lot of stress. I lost sleep. Our work suffered. Good teachers left, and I left. After only three years. Just thinking about it all these years later raises my blood pressure. This is not such an unusual story. I was in an excellent school district.

High turnover in special education? Good people who can make it on their own, fleeing? Yep.

Sure, I could -- usually do -- blame my leaving on lack of administrative support. On high caseloads and insane amounts of paperwork and more than fifty 20-page IEPs per year. On never, ever, even for a minute, feeling like I was doing enough for anyone, or like there was enough funding for me to do my job appropriately. On sitting in a meeting and being grilled by frequently snarky attorneys who were audio taping us while my supervisor sat by not backing me up, pretending she didn't hear the argument while she filled out the IEP paperwork, because she was sick to death of the whole thing and for once the attention wasn't on her. Often we were left hanging in the breeze.

I don't usually admit to myself that the paranoid, fight-at-all-cost behaviors and lack of faith of a very small group of parents also drove me out. Because I love parents; I work well with parents. I am a parent. I get a lot of it. I'd rather pretend that it's only those bad therapists, the ones who are really incompetent, who get driven out. But they both did me in, the fighting parents and the unsupportive administration, and I left the public domain. I'm going to go out on a limb and suggest that I'd have ended up one of those angry commenters anonymously spewing frustration in the wrong places had I stayed in a broken system much longer.

In the past couple weeks, I have read two fascinating posts written by parents I respect greatly, about their initial misinterpretation of their children's teachers this year. Robert Rummel-Hudson writes an apology in a post called Mea Culpa" to the teacher he believes he initially misjudged. And today, another excellent writer (who goes by KAL) wrote a post called "Hello, Doom! Welcome Back to School" about the conclusions she leapt to – and then discovered she might be able to let go of a little bit - with her son's new special education teacher. 

I appreciated that both of these parents shared publicly the emotional roller coaster of a new school year and having to adjust to new professionals, and were willing to honestly share their realizations that maybe things are going to be okay at school after all. Parents have to advocate for their children and I know as well as anyone that many programs and professionals aren’t up to speed. It’s extremely frustrating for us all. But when parents come in armed and ready for things to be wrong and for professionals to be incompetent, the professionals are demeaned on day one and left to play defense in a game no one taught them in college and that no one will win.

Parents of kids with special needs are allowed to share their horror stories about professionals with each other, and they do. Professionals are named and, sometimes, vilified. Sometimes this is warranted; sometimes it is not. But either way, it gives parents a web of support when they share their stories in person, on blogs, on Twitter. This support is important and, I believe, ultimately a very good thing.  Therapists and other professionals may have co-workers they can go to for support, but rarely is there an opportunity to truly give each other the type of support they need to share their own horror stories. Professionals can't write, blog, or tweet about these situations from our point of view in any real sense, or even (legally) talk to our spouses about them. Try explaining one of those contentious IEP meetings to your spouse without using anyone's names or sharing any actual information. We end up with a lot of pent up frustration when we don't have a supportive administrator and time to deal with our emotions. It's more isolating than you'd think. We too need support. 

That's what I heard in the comments that appeared to many to be "off base" in Ms. Prenovost's post. They weren't responding to her words, not really; they were responding to her raw emotion with their own. If, when I worked in public schools, a parent had implored us to excuse them for being our “harshest critics,” I might have wanted to explode, too. But I doubt that Ms. Prenovost herself is her school staff’s harshest critic, because she sounds too self-aware to treat people the way the harshest critics actually do treat professionals. I may have felt bitter back then that I could not write such a letter, imploring greater understanding, too, without getting myself, and my school district, in trouble.  I get it.

We professionals may not physically take your children home with us, but in a lot of ways we take them -- and their parents -- home emotionally, every day and (apparently, in my case) years later. Both the joys and the stresses of the job affect our personal lives and our own family’s lives. As the new school year begins, I implore parents and professionals alike, on behalf of those who work in public schools, to please make an effort to give each other the benefit of the doubt, some support, a little credit, and as much gratitude as we can possibly muster.