Certain words can evoke strong feelings; emotions which are kept at bay can come screaming out, full force, when a specific word is mentioned. Sometimes these are feelings of joy, sometimes anger. And sometimes, when you hear that one particular word, you feel everything from happiness to frustration to exhaustion, all at once. For my family, the word “inclusion” has become a definite trigger word.
If you speak with any parent of a child with an IEP about their child’s education, you may soon discover that he or she is tired. I’m not a fan of generalizations, but I feel confident that this statement is true. As if being a parent isn’t exhausting enough, when you have a child that requires an Individualized Education Program (IEP), you get thrown into the choppy seas of advocacy. It’s not an easy task, and we don’t typically ask to do it, but when you have a child with special needs, it is up to you to be the very loudest voice that advocates for them.
I’ve indicated before how difficult our journey has been this year, and along with the supportive comments we’ve received, there are also those that defend the school district’s actions. Let me make this perfectly clear: I understand how difficult it is to be a teacher these days, and I do not envy their jobs one bit. I’ve expressed to my son’s teachers (this year and in previous years) that our challenges and disagreements are not to be taken personally; whether they want to believe that is up to them. The system is very broken. When school districts gamble that parents don’t know their rights, and the rights of their children, then they are bound to come across parents like us who know better. Set up the hoops, I’ll keep jumping through them, if I feel that I need to advocate for a better education for my son.
Inclusion has been presented as though it’s a privilege, something that is awarded to students with special needs. Ridiculous. I realize that it’s not an easy task, and that contentious meetings are stressful and draining. I also don’t care. Children like my son need to be educated with their peers so that they can grow into adults that can independently function in society. If we segregate these kids into resource rooms, where the environment is easily controlled and corralling them is more convenient for the daily schedule, they will not benefit from being alongside their typically developing peers. It’s going to take extra effort, intensive planning, and more collaboration between teachers, interventionists, and parents. I’m ready to put in the time, and I will challenge everyone who works with my son, and those like him, to do the same.
If you aren’t familiar with the IEP processes, you may be thinking that we’re expecting too much of the school districts, or creating extra work for ourselves. But truthfully, if districts would listen to the parents and just try to make the requested accommodations, there would be a lot less work involved. I can’t tell you how many times I’ve made a suggestion, only to be told “the district doesn’t do that”, even when I know they do. So, of course, we take it a step further, only to be shot down again, so we take it another step further. I’m going to keep going until we get the education that my son deserves.
Our struggles are certainly not isolated; I know of families all across the country that endure more strenuous situations in their efforts to educate their children. My friend recently posted a link on Facebook that details the battles of a family in Florida, whose child is dying yet they are still being forced into absurd battles with their school district. Many people do not realize the challenges that are imposed on families who are already dealing with so much. We face extra financial burden, strained relationships, and worries that most people don’t have to consider, and then we get to deal with school issues on top of all that. That is, unless you are able to hire someone to help you. In our school district, it’s become a well known phenomenon that until you hire a private advocate or attorney, to attend meetings and assist in navigating the system, you don’t get anywhere with the schools. This is disgusting. So, because I can’t afford to fork over a cool one thousand dollars for an advocate before my next meeting with the school at the end of this month, I’ll continue to get the run around.
But run I shall, and I’ll keep jumping through those hoops. I know they can do what we’re asking; we’re not being unreasonable in our requests. Maybe they’re just not used to having parents push back, asking them to think beyond what they’ve done in the past, to suit their child. That’s the thing with kids with special needs; you can’t develop a standard plan, or schedule, or philosophy and expect that every child fits into it. It does not work that way. There’s a reason we sit and write (and rewrite, and rewrite again) these Individualized Education Programs. IEP parents are becoming more savvy, perhaps, than they were in the past, and it’s time for districts to recognize that. We know what’s going on around us.
To all those in this nation’s school systems who sit on the opposite side of the table (teachers, interventionists, district administrators) from the tired IEP parents: stop taking these challenges so personally. It’s not about you. We would be questioning the same things, regardless of who was sitting across from us. I’m sorry if our concerns make you look bad in front of your colleagues; that is certainly not our intention. We do, however, expect you to hear us out without an attitude, and to work with us on these issues. We’re here to work together, not make things worse. We are supposed to work as a team. This process should not be so difficult. You would fight just as hard if it was your child’s education being discussed.
To those IEP parents who do not face these struggles: be thankful. Every once in a while, I encounter a parent who is shocked to hear of our struggles, because they’ve had such a great experience with their schools. I envy the ease you experience in advocating for your child’s education. In fact, I often daydream about what it must be like to walk into a meeting with a list of requests, and have the district readily agree to them. One day, I hope to enjoy that as well.
Hearing about, or thinking of, “inclusion” should not trigger such anxiety. Someday, it won’t, and I’ll get to be one of the lucky parents who is confident that their child is getting the education they need. We’ll all get there. Just keep jumping, and we’ll do it together.