Autism is an ever evolving world where I frequently feel left behind. I’m thankful our autism world is evolving because I know it could remain stagnant. This is all proof that I don’t always know what I’m doing in this autism world and I’m learning, just as you are.
IEPs is one of those places where I’m feeling less-than. Yeah, I thought they wouldn’t be too difficult. Wrong. I thought I could ignore those offers from outside agencies who can help navigate the IEPs and make sure the school is caring for my child in the proper way. For now, I can, but I’m realizing why they’re needed.
Last week we had an IEP planning meeting to update Jeremiah’s IEP. In the past I’ve made my requests known, and they were ignored. Professionals are really adept at arguing the points they’ve been ingrained with, even if those ideas are wrong and harmful to autistic people. There was only one goal on Jeremiah’s IEP in the past three years that I had a problem with, and that was with requesting snack several times during the alloted snack time.
This time around I had an aversion to something they placed in the IEP about requesting Jeremiah make eye contact for a certain amount of time. I had problems when it was first presented about a year ago, and I noticed it was in the IEP again. I raised my hand, summoning the argument from deep within.
See, I can argue my point exceptionally well at home. I can spout what I want to say and give the reasoning behind it, but I fail miserably when confronting the actual human. Gee, I wish it were a paper I was filling out instead of having to tell professionals I disagree with their approach and honestly find it harmful.
In the IEP it stated how many seconds they wanted Jeremiah to give eye contact; seven to twelve-seconds. Now, to perceive how long this is, please stare at something besides your computer/phone/iPad screen for seven-seconds, counting out loud. Was that very long considering the child is being expected to look in someone’s eyes? Now, do the same exercise for twelve-seconds.
I’m not autistic. Well, I don’t have a diagnosis, and whether I have autism or not could be argued. I DO NOT look at anyone in the eye for seven-seconds while I’m speaking to them. I said this in the meeting. My eyes dart everywhere. I look the person in the eyes and look away, make eye contact again, and repeat.
Asking an autistic person to make eye contact is torturous. The founder of Autism Speaks was recently called out by autistic adults when she said about autistic people, “…look them in the eye.” Why? Because autistic people have a great aversion to looking people in the eye. It’s a very common held understanding in the autism community.
Thankfully, and I really mean that with sincerity, Jeremiah will make eye contact with people without prompting. He’s an anomaly. I didn’t feel that asking him to look at them when requesting something was wrong for him, but it would be wrong for so many people with autism. But to ask him to make that eye contact for any amount of time is ridiculous. If he looks at you, he looks at you.
I gave this example, and I feel it’s true so often for our autistic kiddos. If a typical functioning child were to ask for something, all they would have to do is say, “Can I have some juice please,” and we might expect them to look at us for a moment – a moment. We would not expect them to stare at us for an alloted amount of time. Jeremiah’s communication is his PECS pictures, gazing, or pointing to something, this is all he has up his sleeve. So, when he hands them a picture and looks at them, he should get what he wants if it’s not out of reason. Period. No time limit. No eye gaze for seven seconds.
My point here is not only to vent, but to show you that you need to read over your child’s IEP carefully (they should provide you with a copy prior to the meeting), attend the meeting, and ask any questions you have.
Since I’m new to the IEP deal, I got some input from some friends who have children on the spectrum. This is what was advised: Request Jeremiah have a one-on-one aid (don’t let them write paraprofessional on the IEP service times) so he can access the general education curriculum in his least restrictive environment to ensure he gets his right to a Free Appropriate Public Education.
During the IEP meeting when I told the case manager I wanted a one-on-one aid, her and the Special Ed teacher who will work with Jeremiah when he moves into Kindergarten both said they would get in trouble for writing a request for a one-on-one aid. They did write in specifics; Jeremiah will need assistance with toiletng, minor and major transitions, both inside and outside the classroom, he needs someone available due to safety (eloping) concerns. Basically he needs a one-on-one aid, and they can’t write it. Whatever.
What I didn’t realize is my friend had recommended I have them place this request in the “Parents Comments” section, which I rectified the following day when the IEP was semi-finalized (yeah, we still have another meeting because a professor who is working with the school couldn’t make it).
*Since writing this, I came across an article, IEP 101, and The ABCs of IEPs and felt they would be helpful to you. Even if you’ve been on the IEP road for a while, these have some great insight.
Also a great article that’s helpful is at A Diary of a Mom, in What’s Gonna Work, she details how she approaches psych evals (you’ll need to scroll down a little to read specifics) and I think this can be applied easily to IEP meetings.
I have a feeling some of you have been through these IEPs. Some of you have advice to offer others, some of you have things you didn’t do, but wish you did. Things you wish you’d known, but didn’t. So, I, and others, would love to hear what you have to say in the comments. You can share your advice, or a link to a website that has helpful information on IEPs.
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