Thursday, March 8, 2012

An observation about advocacy

Through the work I’ve been doing at my nonprofit, I have been very involved in educational advocacy. I can honestly say that I feel like I’ve been swimming in the advocacy pool and my fingers are getting pruney from it!
Any parent who has ever attended an IEP meeting knows that things can sometimes get very intense, especially when you do not agree with the school district’s recommendations for your child. Often those situations can be difficult to navigate and are full of emotion as you try to do the best you can.

I can tell you that my personal experience with getting my boys the education they need and deserve has been more positive than most people I know. I realize how fortunate I am to be able to say that. It hasn’t been perfect, but it could be a lot worse!  

As an advocate, I have sat through a variety of meetings in several school districts. One thing keeps coming to mind:
In an IEP meeting, why are informed and knowledgeable parents treated in an adversarial manner?

Now, this doesn’t happen all the time. In fact, I’ve been witness to some wonderful moments where things work well because the district recognizes the value of parental input.
Unfortunately, this is usually not the norm. To me, it would seem logical to expect that parents who are active participants in their child’s educational process would be treated as collaborative partners in the shaping of the IEP. Parents are often a very rich source of information about their child and much can be accomplished with a positive approach.

As a parent, you are an expert. It may not feel like it, but you are! If you have gone through the process of diagnosis, read every book you can get your hands on about the diagnosis, and have participated in various forms of private therapy in order to help your child, you are an EXPERT. If you feel like you don’t know anything because your kid is melting down again and you don’t know how to handle it today because your usual tricks aren’t working, you are still an EXPERT on your child.
Parents can be overwhelmed by the IEP process because it’s full of legal mumbo jumbo, there is vocabulary that is difficult to understand, and there are a lot of people in the room who have letters behind their name. It’s intimidating, for sure. God forbid you hear horror stories from your friends who have had awful IEP experiences! It’s a safe bet that you will feel some level of fear or dread as you participate in that setting.

When parents are able to claim a sense of expertise and power, they can ask insightful questions and help to effectively strategize with the rest of the team, which leads to positive changes for their child’s IEP. This is, of course, when things go well. Many times they do not go well. And then, that smart, powerful parent turns into an adversary in the eyes of the district.
I hate to see this happen! In my experience, and that of some of my colleagues, this can happen more often than not. The opportunity for improving a child’s IEP (and their school experience) is wasted. And it’s sad.

I don’t really have a well-developed idea to go along with this observation. This has been mulling around in my brain for a very long time now and I figured it was time to at least start the conversation. I haven’t prepared some glorious argument about what this means to me, or a list of tips and tricks to combat this kind of situation. I just wanted to share the idea of it. It’s food for thought. It’s not a complete thought. It’s a work in progress.
Educational advocacy and IEP’s are such hot button issues, that I’d be interested in your thoughts. Do you agree that sometimes the parent can be seen as the adversary? How do you respond to that? What things have helped you get what you needed for your child’s education? Feel free to share in the comments below.


Anonymous said...

I know exactly what you are talking about... My next meeting is on 4/26/12 My son is about to enter kindergarden... All previous meetings have gone well, (he has been in the public school sistem since he was 3), but I know that it is now when the REAL battle begins!

Jasmine Hodges said...

We are there right now with a whole peanut allergy and me feeling like there in the wrong setting.... I get so tired of fighting and just keep thinking if I wasn't so stressed over all of this what could I get accomplished.... How much more peaceful would my life be.

Anonymous said...

I'm in this position right now. Things seems to go fine as long as we agree with everything the school is saying. When we don't, it turns ugly - and fast. This year, our school is out of compliance with FAPE and IDEA for all children in my son's classroom. The parents who know their rights and are advocating using their procedural safeguards are considered "hysterical parents". The best piece of advise I can give is to stay factual, research your options, keep emotion out of your communications, and most importantly, put it all in writing. Your notes will be far different from any set of notes you get from the school. If you need to, contact your local Office of Education Ombudsmen. They work with both sides to repair the relationship. It's different from being an advocate, but they do work to help both sides understand each other. If that doesn't help, research which companies the district has advocate services through, and contact them. Most of all, never give up! It's too important! You ARE the expert on your child.

marisa said...

Aahh..IEp's. Have one in a few weeks :) Our 6 year old was just exited from special ed which was honestly bittersweet. I know my advocacy will get what he needs down the road if it needs to be done.

Our 11 yr old is HFA and boy have I had my share of weird meetings. Especially transferring to a whole new district with full inclusion. Never heard of it and was totally against it to be honest but it's working out great with the help of an aide.

I go in with a plan. I expect what I do at home for him be done at school and vice versa.I don't like surprises and I know they don't either. I got a social skills group put on campus after 2 years of banging heads with them.

Now we want to fade the aide and I'm not sure what I will be up against in a few weeks. I have brought Area Board 3 with me, which is a scary thing for the district but it had to be done. I felt alone in those meetings.

Our ABA therapist will be with us this time as well with input and how we work with him at home.

Loved your post to pieces.

Jen @ TheUnProcessedKitchen said...

Oh yeah. What you said.

I have done advocacy work for early childhood for years; then when it came time to advocate for my own kid I was extremely grateful for the experience because it definitely helped - but I also can't believe how difficult it is, and my heart is heavy for people who might not have had years of getting used to kind of being a calm, persistent, pain in the butt like I did. Love the 'thread level' graphic :)

Becca said...

Being involve in any kind of Advocacy has positive result in someones life. And a great example for our kids.

keep up the good work!

Jean Ohnemus said...

When my 15 year old son started preschool until fifth grade I had very, very few positive interactions with his teachers and principals. The state I lived in until he was in third grade misdiagnosed him with ADHD and luckily when in fifth grade Asperger's Syndrome was finally concluded. I am partially to blame for the misdiagnosis. I didn't explore all of the avenues I could have like keeping up with my Council for Exceptional Children membership considering my undergrad at the time was in special education. I could've used an advocate because I did not know what was going on with him at home and certainly not how to get my point across that what they were doing at school wasn't working. He was exited from SPED last year due to his awesomeness, maturity, the fact he's on the edge of being AS and not, and since he was able to attend a "special" school for two years. I always cried at his IEPs but not due to being treated crappily but because they were giving him what help they could and I, obviously, really appreciated it. While working on my masters 1-2 years ago we, obviously, went over what to do in IEP meetings. First of all, it's frickin' hard to write and implement in a classroom a proper IEP to serve individual students needs. Treating parents/guardians and advocates like crap and not taking their advice and suggestions makes the job of the writing of an IEP for many reasons. Soooooo through all of my ramblings, most good general education teachers do want as much information as possible on how to best serve exceptional students in their classrooms. Most good special education teachers appreciate receiving as much information as possible about the "do's and don'ts" regarding exceptional students strengths, preferences, interests and needs (I call it S.P.I.N. to put into eventual personal profiles) Most good SPED teachers also appreciate updates as much as is possible (like medications although it's not ethical for a teacher to ask up front, changes in home like people and sleeping, etc.)

Maria Whiteway said...

Hello! I know this is an old post but I am an Autism Support teacher and definitely agree with you. Parents have a right under IDEA to be an equal partner in the decision making process. Far too often, professionals think they know more than the parent. But who knows the child better than you, the parent? We as professionals should be supporting you and your decisions. I am actually finding that many parents have the exact same concerns that you mentioned in this post! So what are some characteristics that you think professionals should have towards parents? The first one that comes to my mind is compassion. Any others?

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