April 26, 2013

A Question of Trust

I have trust issues. I know this. I'm working on that.

Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.

It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.

If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:

Me:
As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.


Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.

I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.

Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.

But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.

Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.

Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?

But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.

How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.

The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.

Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.

So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.

Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.

Special needs parents are probably herbivores. But we do have T-rex dreams.

6 comments:

farmwifetwo said...

Sorry, I have learned over the years that they will do anything as long as it is easy. With the fights between the Ont gov't and the union.... good luck. Luckily both teachers I had this year did the best they could. Luckily after a number of years of knowing the rules I have gotten to a place where one will be fine and now we wait to see if the younger's teacher is moving to. Luckily the highschool the elder is off too in September and his brother two years later.... is the best you will find around. Perfect no.... but they try hard.

We are lucky...... now. But many are not. It shouldn't be a war. Ironically, most are not asking for everything.... just basic supports and being taught the 3 R's like everyone else.

JodiC said...
This comment has been removed by the author.
JodiC said...

(Had the same early morning rant that required some tempering based on our situation...oopsy).
Having the almost identical issue here in our affluent district. remember, for every one parent like us who know the laws, read our kids' IEP from cover to cover and ask for changes and oversight, there are two parents not even reading their kids IEP and are trusting the educators are always acting in their best interest and not at the convenience of the school or district. .....all which make us look like an even bigger pain in the ass (thus the well meaning but naive teacher's blog). i have often known that it is not a matter of resources, money or staffing (all of which my district has amazing access to and has provided my son.....just not in a manner that is particularly meaningful to his specific disability). I have not asked for anything more than providing my kid with an education that will allow him access to the curriculum and growth within that curriculum and proper training for those providing him with the service....I think the basics of what we are all asking for.. To be told by the district "he's such a wonderful addition to our classroom" while at the same time being told we will never be satisfied tells me his best interests at school will never be the same as our best interests for him and serve as a reminder that theyill only be working within the scope of their own educational limitations unless I stand up and continue to do something about it. I will join your army of advocates demanding others be advocates so we can get that level playing field we all want so much.....say the word. Pretty sure it's under the green frog on the talker.

Suzy Pietras-Smith said...

"free and appropriate public education" (FAPE)

How is it an appropriate education if it doesn't help them learn to their fullest potential? That has been my question to several SPED teachers and not a one has been able to actually answer me.

organized chaos said...

I appreciate your post, and your insight that we are both making the mistake of approaching the situation as though our situations are universal.
I recently found out one of my students is moving to another county, and I flipped out- she will no longer be under my watch and I immediately assumed the worst on how this county will treat her and her abilities. Someone needs to fight for her- you are right. Someone needs to fight for all our kids, and parents need to fight for their children.
What's hard to swallow is that as teachers we work so hard for our kids and yet the parents still don't trust us. I leave my own daughter everyday to get paid far less than everyone else I graduated from college with, work evenings and weekends while ignoring my family, only to be learn that the very kids I'm fighting so hard for don't have parents who trust me.
I've been doing this job for 10 years and I do it well. But I can't keep it up. This is crazy. It will be the parents who drive me out. I'll be replaced by someone with less education, less experience, and less willing to stand up and fight for these kids.

Fight as hard as you can for your kids, but thank their teachers. Give them some trust, something so that they know that while you may question their every move it is because you are thankful for what they do and you want more of it- instead of a lack of trust in their ability.



organized chaos said...

But also, I need to know from you all- what do you want from us? What can we do to build back the trust you've lost? We (at least I) want to be a team, so how can we make that happen?

Suzy- I agree. FAPE is crazy. In my sped masters legal class we spent an hour screaming at the professor about how wrong it was, but it is how the courts have interpreted the law (to this point). I think understanding FAPE just helps understand some of the decisions that are being made by districts.