I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this mysterious and bureaucratic process where we are being asked to trust total strangers to determine the educational fate of our children. We are turning over our kids to this *machine* for 18 years in many cases. It is asking way too much of a parent in my opinion but it is what it is.
There are ways to make this process less mysterious and I firmly believe that gaining a sense of understanding of the process, if not control over it exactly, can go a long way in making a family’s life better.
Since I’m a fan of lists, I’m going to list off the things I think you should do RIGHT NOW if you haven’t already. OK?
- Buy this book: Wrightslaw: From Emotions to Advocacy.
- Read it. Put AWAY the highlighter and resist the urge to fold down pages or take notes. Just read it. It may trigger lots of emotions. I found myself getting absolutely furious with the school district over all the NEW ways I was now aware of how they had screwed with us.
- If you find yourself getting absolutely furious, get over it.
- If you can’t get over it, consider hiring an education advocate. You need someone who is going to reign in the emotions from here on out.
- Read it again. I’m serious here, you need repetition to learn…everyone does! I know you’re thinking that you don’t have time to read this even once, never mind twice, but you need to make time for it. It’s important. This time highlight/fold pages/take notes to your heart’s content.
- Review point #3.
- Develop a vision for your child. I blogged about this for the National Fragile X Foundation. Create a vision statement for your child’s life…think long and short term. You can see our vision statement on the Foundation’s blog: A Vision.
- Develop a Positive Student Profile for your child that fits your vision statement. There are a number of samples on that same blog on the Foundation’s website, Caleb’s is here: PSP-1.
- Save this file: Learning Styles (this has a page for boys and one for girls.) At least two days before your next IEP, meeting forward it to the entire team and tell them you would like the “Accommodations” to take your child’s learning style into account. We have encouraged them to copy and paste the language right into the document!
- Arguably, this point isn’t directly IEP related but I am guessing that at least ONE of your child’s goals involves social skills. Am I right? Yes? Good. So I want you to go to the Foundations’ blog again and read this: Finding Hope in My Children, by Holly Roos.
- Look at the slides.
- Listen to the podcast.
- Ask your child’s teacher on day 1 (or tomorrow if you’ve already started school) if you can give this talk to his or her friends. No one else can do this for your child, no one else knows your child the way you do and, at least in my district, staff are not allowed to give any specifics because of privacy rules so they cannot answer many of the questions that students may have. You have to do this. Next Tuesday, I’ll be making the request of Monkey’s new teacher and I want to puke…so I know how terrifying it is. But really, if you want the best for your kid…and I know you do…you have to do this.