Today we had Simon's final IEP meeting of the year. I'd tried to coordinate it earlier than the day before his last day of school, but it seemed that this once the administrative gods were not in my favor. After several phone calls and a lot of schedule-wrangling; Simon's team finally came to the table today to discuss our plan for moving from preschool to kindergarten (gasp!).
Though this was by no means our first IEP meeting, it felt somehow more important and therefore more stressful. So many changes both in Simon and in the curriculum warranted an extra level of preparation and precision. We're moving from a teacher we love, and who knows Simon very well (over 2 years), to someone new and unknown. We're going from a half day to a full day, and from the relatively flexible structure of pre-K to the far more academic Kindergarten model. We're also shifting from Simon being in a special education classroom 100% of the time, to spending some time (with the assistance of an aide) in a general education classroom in order to interact more with typically developing peers. Simon will also be eating lunch at school; and with his food allergies and tendency to choke, even this is a source of concern.
In short, this meeting was a biggie. We've been through a battery of assessments over the past few months and we discovered new diagnoses to discuss, and had many new needs and concerns to address. The IEP meeting provides the forum to discuss them and craft a plan to be carried out formally, in writing; a contract between all the members of Simon's educational team.
In our new plan, much of what I felt was needed was implemented. We've added an aide, specified individual therapy time, and created a strategy to address his food allergies and gagging. Some of what I wanted to address wasn't included in this version of the IEP -- like formally changing his diagnosis to include Autism and sensory concerns, or adding music therapy and the use of technological assists (like the ipad) into his lessons. However, everything I brought up is now on the table for further evaluation in the new school year, and the appropriate steps are already being taken to pursue these additions. Very soon there will be more meetings, evaluations and tests, and finally another new IEP to write. The entire team has agreed to come back, re-evaluate, and more specifically address all Simon's needs in the Fall after more screening has been carried out.
So, despite a fairly heavy amount of worry and trepidation, I do feel (somewhat to my own surprise) that it went well. And, since I know that this is just one of many future "biggie" meetings we'll be attending for Simon's Individualized Educational Plan (darn kids just keep getting more complicated!); and because I know that many other parents are in similar positions, I'm going to catalog a little of what I've learned that I think has contributed to our success (thus far!). Honestly, it isn't anything earth-shattering in revelation, but it may be helpful to simply spell it all out, step by step. So, here goes:
1. Be the comprehensive specialist on YOUR child.
When it comes to all things Simon, I make sure I am well versed in all his challenges -- physical, medical, cognitive, sensory, etc. Every chance I get I make sure to ask every professional working with Simon -- academically, medically, and therapeutically -- for their opinion on his treatment and education moving forward. Sometimes they include their recommendations in their notes, but I always make sure to record it in mine.
Employing a giant binder, I've created the Encyclopedia of Simon, with the contact information of all our specialists, copies of all his most recent assessments, diagnosis, doctor's recommendations and therapy logs, reference information from lectures and websites, copies of his previous IEPs, and my own notes on anything I think is important. (Insurance information, and other kinds of documentation is in a separate binder, FYI.. otherwise, I'd need a forklift to carry it).
I bring this encyclopedia with me to the IEP meeting (and almost anything else related).
2. Be prepared. Tap into whatever resources you can to learn about the IEP process itself (you can often find them offered through school districts and therapy centers). I've read books, scanned websites and been to lectures (mine were offered free though KKI) about IEP preparation and about what one can and can't expect from an IEP and the school system. Just understanding what this contract can and can't do makes a huge difference.
Then, shortly before every meeting I review the previous/current IEP. I also review charts of developmental and educational milestones and, culling from what I know Simon has not yet achieved, I compile a list of what I think we need to work on further, or add. I make a point to use appropriate jargon when crafting my list (borrowing terminology from my research and from the evaluations I've amassed). I make a copy of my list for each person I know will be attending the team meeting.
This list has been one of the biggest keys to a successful meeting. It immediately gets everyone on the same page (literally), articulates my concerns and desires in a concise and thorough way, and, even if I don't get everything I want, everything that I want is addressed. I also add questions to this list to make sure I don't forget anything, or leave without a plan to get them answered.
3. Be respectful and appreciative. Even in difficult circumstances (and talking about what your child can't do and trying to figure out how to get him or her the best and most appropriate help and care when you aren't there is a pretty damn difficult pill to swallow) it does not help to lose your cool, or the perspective that the people sitting in the meeting with you are there specifically because they want to help. They, too, want what is best for your child and, if you operate on the good faith that they will do whatever they can to ensure that this is attained, you will find partners instead of adversaries. And, let's face it, we all need more help - it takes an entire village to help a child with special needs and you aren't going to get anywhere if you storm the place with torches and pitchforks.
Having said that, remember that the IEP is just the framework for the process. Be vigilant in making sure that goals are carried out and treatment is effective. It is your job to continue to advocate for your child, but (whenever possible) doing so in a way that is positive and constructive will yield the best results for everyone, including your child and your stress level. Also, be sensitive to the fact that the school has a lot of kids to work with, and sadly, a lot of those children are going to be in more challenging circumstances than yours, some of them without as much support from their own parents.
Finally, I make the effort needed to show that I appreciate the time and the expertise of the professionals I am working with. Preventing burn out of the people you depend on for the care of your child starts with how you treat them. A box of joe and some munchkins goes a long way, as does a simple "thank you."
Then.. you just wash, rinse.. and repeat.