Anatomy of an IEP Meeting: Part 1

(I wrote this in the summer about Ruby’s IEP meeting at the end of pre-K. I sent it to the Motherlode blog of the NYT, and was rejected with the line, “sometimes things just don’t work out.” What better place to share the duds of the wider world than here at cozy Soft Science, where everything works out beautifully in the end?)

You’ve underlined, “Ruby is non-verbal but does communicate when she needs to go to the bathroom.” This seems out of date. “I don’t think it should say ‘non-verbal’ anymore, because she’s not.”

‘Non-verbal’ has risen as the most painless way to describe the absence of speech in a child. It is succinct, not requiring any modification such as ‘severely…’ and its clarity discourages questions. “Non-verbal’ always brings you back to the first semester of nursing school, in a physical assessment class.

One instructor asked the other to the front of the class to demonstrate reflex testing. Taking hold of her arm to show the brachial reflex, she remarked on the raised red scratches across the other woman’s forearms. “What happened! Did your cat go crazy?” “No,” she said with a quiet smile. “My son—he’s non-verbal—he was having a bad day yesterday. He scratched me up.” She shrugged, and the other instructor lifted her arm by the crook of the elbow and struck it with the reflex hammer. Nothing happened, and after a couple tries the instructor said, “Diana, you need to relax! Let me be the one that’s holding you.”

The special ed instructor agrees to strike ‘non-verbal’ from the toileting goal, and this is a proud moment. But she hesitates over whether to write that Ruby verbally indicates that she wants the bathroom, or still primarily communicates with a sign. What? you think. She hasn’t had the pleasure of hearing Ruby say, “Go pee go pee go pee go pee go pee”?

Several months ago when you decided to highlight this phrase, you also taught her its partner, “wash hands.” But that shhhh and those consonants piled up at the end are tricky, and you are still the honly one who deciphers this rolling off her perfect lips. She knows this, so she’ll only say it when you ask her what happens next. But she also sees the success of communication in her well formed “go pee,” so you are suprised that not everyone at school has heard it.

The speech therapist also seems to have heard less from Ruby recently than you would have hoped, and in a moment you’ll embarrass yourself. You read, “Ruby primarily acquires wants/needs by pointing and gesturing towards desired objects. She is beginning to spontaneously produce verbal and single sign approximations to indicate her wants and needs,” and say that this doesn’t reflect the progress Ruby has made this year.

She is scooted next to you with her IEP interface open on the laptop screen, showing her willingness to work with you on cleaning up the language in the document, but now you are haggling over whether Ruby uses 2-3 word phrases or 3-4 word phrases. “What if we say, ‘extended utterances’?” she asks. “Extended utterances’? I don’t know what that means. Can’t we just say simple sentences?”

“Okay, so you want to say she can imitate sentences?”

“It’s not imitation. I mean, I know if she’s just being lazy (lazy is not a term that makes its way into IEPs, but you like to use normal words to describe your daughter’s strange ways) she will still try to get something by pointing and saying one word, but if you tell her to ask nicely, she can say ‘I want more chicken please.’ She can ask for things with real sentences.”

The special ed coordinator, the boss of this thing, looks up from across the table. “Kristen, I think she needs to stick with what she hears. That sort of speaks to the integrity of the work of the speech therapist and the document.”

“Okay.” Did you blush? Did you just cross the line from rational to pushy? Even though this is your most important and most adult role and you have learned to cherish it, do you need for there to be a part of this meeting where someone looks you in the eye and tells you that they know that neither you nor your daughter did anything to cause her to be so very different, and that you’re both doing a good job?

The occupational therapist talks about the hand over hand shapes they’ve been working on, tells you again that curvy letters are harder and so writing her name still eludes Ruby. The soft sounds of ‘Ruby’ are hard for her too, but she’s practiced them enough that when someone asks her name, they just might be able to grasp her answer, and when you brought her brand new stepfather Andrew to school the day before, she was able to introduce him to her pre-K teacher, “Druuu!”

He does not realize the luck of this shared syllable.

You are moving to New York City and Ruby will be in a new school next year. Sitting alone with the special ed instructor after the others have gone on to new meetings, you tell her that you know you are being nit-picky, and she says she knows, “you don’t want them to be prejudiced.”

She tells you Ruby is really good at puzzles. She shows you a wooden puzzle depicting a fairly abstract hawk, telling you Ruby can complete it by herself. Your daughter’s strengths and preferences inspire speculation about her future as any child’s do. People say she’ll be a restaurateur because she loves to greet and to serve food, always making sure plates are full at the dinner table, or an engineer, because she does have a way with blocks and puzzles. You wonder about these destinies, and you wonder whether she’ll ever be able to dress herself.

Among the over-analyzed words comprising the IEP, and the fraught terms we use to describe very unusual children, there is one that you are grateful for. Is it just her– a girl who has been called an old soul because of the look in her eyes, a girl who has been called a crystal child– or does it come from being different than her peers since she was a baby, from having to work hard every day in order to accomplish things that most children give no thought to? Ruby is special. You want people to know that this word is not a euphemism. You hope that she will own it.

(So, the pre-K IEP situation was emotional. I knew we would be leaving that school after one year. Now Ruby’s in kindergarten and we’re apparently ‘settled,’ for the first time, and we have the whole rest of her education stretching out dauntingly before us, and there are more practical matters to address.) P.S.:

 photo(5)photo(3)photo(2)

Ruby, Andrew and I spent a couple weeks working diligently on this after dinner and now she’s all over it.

3 comments

  1. Yay Ruby. And you and Andrew.

  2. In most countries “nonverbal” is being completely thrown away and people are using “CCN” or “complex communication needs” in its place. My daughter, for example, is a child with complex communication needs.

    This talk by the wonderful Mary-Louise Bertram (an amazingly AAC knowledgeable pro from Australia) breaks it down (and is awesome!) It’s really long but worth a listen (I played it in pieces over a few days while cooking, etc.): http://www.youtube.com/watch?v=N9tmi0XLNjg

  3. “do you need for there to be a part of this meeting where someone looks you in the eye and tells you that they know that neither you nor your daughter did anything to cause her to be so very different, and that you’re both doing a good job?”

    Yes… likely the most necessary of words in an IEP meeting, and the ones that make everyone feel safe and comfortable and able to talk and write the best IEP ever.
    You’re both doing a good job, Mom!

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