Those annual IEP (Individualized Education Plans) meetings all parents of children with “special needs” attend are something I used to dread. Meant to ensure our children are given the supports and accommodations they need, I went to our first meeting with eager anticipation. This was where, I thought, we would be able to work with a team of people all of whom had the same goal for our child – getting and giving her the best supports and accommodations available so that she could flourish.
What quickly became apparent however was that this was when her team would write a series of bullet points describing all that was wrong with her. All the ways in which she fell short, all the ways she demonstrated how incapable she was, were described in detail, documented and added to her growing file. This was the time, once a year, when I would sit and listen to that itemization, fighting back my tears. The few things said during that first IEP meeting that were supposedly positive regarding spoken language, were written as a criticism, “…uses gestures to whine or protest. She is described as shouting or vocalizing to gain attention.” I would leave these meetings feeling hopeless and filled with the sort of despair I described in yesterday’s post, Dare to Hope.
Today, almost ten years after that first IEP was written, Emma writes by pointing to letters on a letter board and more recently with both her RPM teacher and me, she is typing on a bluetooth keyboard attached to an iPad. No one touches her as she writes. Emma has written before about the words that come out of her mouth. I will quote her, since the way she describes what happens to her when she speaks is far more descriptive and eloquent than anything I might write. Emma wrote yesterday in her IEP meeting, “I try to talk, but the words just come out wrong.” A few months ago she wrote how she wished people would, “listen to my writing voice, but they listen to my talking voice instead.”
As always, I asked Emma if I could write this post about her first IEP, as an example of the assumptions made and how far off we were in our thinking as well as a document for those of you who are at the beginning of all of this. Emma generously agreed that this was a good idea and wrote, “know that just because a kid doesn’t talk or talks like me, doesn’t mean the words that come out are the same words that are in their mind.” Regarding her so-called “behaviors” which Emma describes as a body/mind disconnection, she wrote,”I hope to better control my misbehaving body, but sometimes it won’t obey.”
A few weeks ago I asked Emma if she could remember when she was very young. She wrote, “Yes, my body could not behave because I was not able to cope… too many competing sensations. I couldn’t make sense of everything that did not connect me with my irritable body.” Now keeping her words in mind, read these words taken from her IEP, dated 2005 (Emma was three years old):
Emma avoids “looking others in the eye, does not answer when people talk to her, does not get along with other children, seems unresponsive to affection and shows little affection towards people, withdrawn…”
“The skills that she does not show evidence of include: does not yet engage in make believe play, does not yet match objects, complete interlocking puzzles, repeat digit sequences, identify body parts or show understanding of number concepts. She does not yet point to body parts, clothing items, prepositional commands, or know size. She does not participate in story telling or give her full name or use pronouns… and shows limited interest in other children.”
The report goes on to say:
“She does not vocalize when another person calls her name. She produces a variety of consonant sounds.”
When I read Emma’s words and the way she describes some of what was going on for her and compare her words to the words written on her IEP, it is impossible not to see the massive disconnect between what was actually going on and what all of us assumed was going on. It is from those assumptions that her goals were then created. Goals such as: “Emma will increase communicative intent via word and/or gesture to consistently request object article/toy/food (8/10) trials.” “Emma will maintain eye contact and prompt (8/10) trials.” “Emma will use at least 10 objects functionally, 4/5x” “Emma will imitate 1-2 word utterances during play, 4/5x” the list goes on, but the goals are all either regarding compliance and/or acting according to non autistic standards of behavior using spoken language.
In contrast, yesterday we went to Emma’s IEP meeting with Emma, who contributed her own thoughts and opinions about the goals that were set by writing on the keyboard I held for her. At one point she wrote, “it’s very good having time to go over goals.” And when asked about the efficacy of being asked to use a mood chart, she wrote, “Sometimes I feel many things at once. Would the mood chart work for you?”
Can I just say how proud I am that my daughter asked this question? And by the way – No, Emma, being asked to chart my moods or anticipate what my mood might be would not work for me. I think it would actually really piss me off if I was asked, while feeling both upset, sad, frustrated, maybe a little frightened and annoyed to use one word to describe what I was feeling and then was asked, “What’s wrong?” when I could not rely on spoken language to adequately express myself and no one could support me in the way I needed, so that I could write either.
What was wonderful about yesterday’s IEP meeting was that her staff is dedicated and completely committed to listening to Emma and learning from her what it is that she needs and wants. Everyone was kind, thoughtful and patient and in the end we have an IEP that reflects our goals for Emma, but more importantly it is a reflection of her goals for herself.
Emma ~ 2004, the year before that first IEP
Emma's Hope Book 