Most of you know what an IEP — Individualized Education Plan — meeting is about. You discuss your goals for your child with his or her teachers, administrators, speech therapists, occupational therapists, you name it.
The number of people at the meeting is pretty much determined by the amount of special assistance your child requires. For Olive, this means lots of people.
by Jen Perlman Sullivan
Olive’s school makes the IEP as painless as possible, but a gentle pelvic exam is still a pelvic exam. IEP meetings are those first steps for the year, that daunting beginning. It’s about what you and your child’s team view as appropriate goals, but it also about you.
I once saw the IEP meeting as base camp, where you make your plans for how you are really and truly going to climb that mountain. If the weather allows for you to make the entire climb. If you understand what is necessary for the climb. But it’s also when the education professionals sherpas can let you know if your energy should be spent on the summit at all.
Maybe, though your child was previously expected to be able to climb to the second camp, she has made it known that climbing is not for her. You know your child best. And yet, no matter how honest with yourself you try to be, the sherpas are less partial. Maybe you should skip the mountain. Maybe you should focus on enjoying the many other opportunities and amenities of Tibet.
This morning at Keshet we had a MAP (Making Action Plans) meeting for Olive — something new to LB [my husband/Olive’s dad] and me.
If the IEP meeting is a discussion at base camp, then the MAP meeting is the orientation program you attend before even getting your passport and Tibetan visa. It’s the dry run, the IEP before the IEP, the meeting before the meeting. It is more casual (Beata — a respite nanny and Olive’s best friend — came to the meeting, also) and I suspect part of the purpose of this meeting-to-discuss-the-meeting is to prepare parents for what is going to be a significant shift in the previous IEP goals.
The meeting began with the question: Who is Olive?
While that sounds like an elementary question and one a parent should be able to answer and hear answered without any painful aha! moments, it isn’t. We all had answers to this question, and all of our answers were similar.
Olive has strong opinions. She has a high level of comprehension when the information is something she has deemed meaningful, and a low level when it is something she does not want to hear. She has a sense of humor… often at the expense of others. She has problems with impulse control, but a great deal of her naughty behavior is planned. She is capable of strategy, and capable of understanding two part communiques, like, “First you must pick up the paper mess you have made. Then you may have ice cream.”
Olive doesn’t like transitions or changes in plans. She doesn’t like waiting, and she doesn’t want to do things she does not want to do. She warms up to people easily if she can sense their interest and acceptance, and has no use for someone who is trying to put on a brave face. She has no diplomacy, and the diplomacy of other people is something she views as an annoyance. If she’s not your cup of tea, best to exchange simple high-fives and keep moving. No matter how much you may see yourself as “someone good with children” or how hard you work to appear accepting and not afraid, she will see through you with little effort. Don’t take it personally: if I weren’t Mommy, I’m certain I’d never make it into her soul’s society.
At her Aunt Emily’s wedding reception in 2008, Olive was cold and uncomfortable in the wind, uneasy in the large tent filled with people, and didn’t like the noise. LB’s Uncle Mike came to our table and said, “Give Olive to me.”
Olive had never met Mike before, but she immediately held her arms out and let him carry her for the rest of the evening. He was not the first person who tried to give LB and me a break (Olive would not allow us to put her down), but he was the first person who succeeded because he wasn’t willing to hold her: he wanted to hold her.
A mother’s seemingly simple goal
I have no trouble accepting that Olive is nonverbal, Olive is not on an academic track, and Olive has many limitations.
The one blow that still smarts is that there was a time when Olive was a blithe and happy little person who did not worry, and this is no longer true. Now she is given to anxiety, and she has been an anxious person longer than she was a blithe person. When she is happy, there is no one happier, but when she’s nervous or upset, she feels it with her whole body. There are tears, but also vomiting. Diarrhea. Itching. Picking. Pulling her own hair.
My stock goal, when asked, is for Olive to be able to be around peers both neurotypical and Spectaculan without being aggressive or self-injurious. I’ve listed that as a primary goal at every IEP meeting for as long as I can remember, and have taken pride in not being one of “those” moms: the ones who insist their child will be “cured” and who cannot even entertain the likelihood that speaking is not going to happen, period, and certainly not by the spring of 2015.
But today, listening to Team Olive, I realized that my go-to goal for Olive isn’t just unrealistic: it’s not even a goal Olive would have for herself. Sure, she’d like to endure a group lunch outing without vomiting, but she’d rather the situation never occurred in the first place.
She loves her people, but like 99% of LB’s and my biological families, she is an introvert. Having lunch in the main lunchroom is something she can occasionally handle, but it’s not her preference — not even on a good day.
On good days, she enjoys doing things with her preferred aides, or with Beata, or with LB and me: things like cooking, water play, dancing to music, and various motor tasks. She is generally happy with her routine, and happy when things go according to her plan.
She is happy when we arrive home from school and Beata’s car is already there, because this is how things are supposed to work. Olive is happy when Beata brings her back home in the evening and she sees her snack is already prepared and laid out for her. She is happy to be given a new rawhide bone to hold while Pam Spaniel chews. She is happy when I tuck her in at night, we exchange our I love you’s and I give her a choice of song (right now, her favorite is Hi-Lili, Hi-Lo). She enjoys getting up with LB on the weekends, watching soccer, and eating guacamole for breakfast.
But she will always, always crave that time in the sensory room, on her swing and in the quiet. Or standing in a corner, spinning, gesticulating, and speaking in rapid-fire Olive-ese. Or sitting on Beata’s couch, peeling her own orange and watching Arthur (but only at Beata’s house; she does not enjoy watching Arthur at home).
Her Happy Place is never going to involve being with a group. Why should this surprise me or even bother me when I myself do not like groups? I suppose because it just sounded good: “successful inclusion experiences” felt like a realistic goal.
But having that goal meant that even now, after all these years in the world of autism and of thinking Really, I Get It And I Am Okay With Everything, I’m capable of lying to myself. I can lie to myself over the seemingly simple question of Who is Olive?