Writing her own life

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November 10, 2017 by whirlyjoy

My Dragon Lover and I were sitting up in bed, watching the election results on Tuesday evening, when my iPhone buzzed with a mind-blowing text message:

Mom

I stared at the screen in astonishment. According to the top of the text bubble, this had come from Aida. Before I had the chance to nudge my DL and show him, two more bubbles came in.

Thursday yes mom 

Tomorrow swim yes

*****

My eldest daughter’s first word of expressive language was “No.” She was six years old when she produced this sign independently, as an appropriate response to a question. I don’t recall what the question was, but it likely had to do with food she didn’t want to eat. For many years, nearly all of her communication centered on food. In fact, most of it still does. We used snacks to teach her words and motivate her to use them – everyone did. Every speech language pathologist, every teacher, every behavior specialist, and we her family. It’s no wonder, really, that “perseverative requests for food” continues to be on the list of “challenging behaviors” that are tracked and worked on by staff in her home. Perseverative requests for food have been a problem since the day she learned to request food – after years and years of teaching sessions where her favorite foods were used as a reward.

Some family members have never moved away from this model. Posh Nana carries tiny exquisite chocolate macarons, and cream truffles shipped from Switzerland, and huge chocolate chip cookies cut into bite-sized pieces in her voluminous Gucci handbags. These are for her own snacks, but she shares them liberally and particularly cannot resist doling them out to Aida when she leans in face to face and signs “candy” or “cookie” with a sly grin. Aida knows her chances are better if she gets Posh Nana alone, so she’ll turn her body and maybe even her whole chair in a restaurant, away from everyone else and towards her grandmother, creating an intimate space for just the two of them to have a friendly little discussion about “chocolate.”

*****

While Aida painstakingly added a word or two every several months to her expressive signing vocabulary, kindergartner Mimi was talking her way into her elementary school choir. She’d been seeing that choir perform Christmas carols on the street corner at our neighborhood Holiday Magic celebration since she was just a year old, and getting to be a part of it and sing with them was her main (possibly only) motivation for looking forward to starting school when she turned five.

When I learned that the choir didn’t accept kindergartners I cringed a little. I was pretty sure Mimi wouldn’t take that lying down. “What kind of stupid rule is that!?” she cried out when I broke the news to her in September. I said the choir director had told me that kids had to be able to read to be in choir. “I can read!!!” Mimi said, scandalized that anyone would think differently. “So they can’t keep me out of choir.” The next day she marched up to the choir director during lunch and told her the same thing. And that December she was caroling with the rest of them.

*****

These past two years, Aida has been working on sending emails from school, with instructions and prompts to help her along each step of the process. We started to work on this because she was able by then to type functional messages in the app on her iPad with a great deal of fluency. “Mom Saturday Five Guys cheese grilled french fries cookie” for example. She understood that typing this message and showing it to me would convey her meaning. Also, she would often ask her teachers at school about when she would see Mom next, or when Posh Nana might show up with her handbag full of treats.

The thing is, she had no understanding of communicating when we weren’t sitting next to each other, bent over the same keyboard. We’d begun trying video calls a year or two earlier, and she was still having trouble with that concept. I’m pretty sure she simply didn’t see the point of trying to say anything to me or to her grandparents when we weren’t right there in the room with her. What relevant request could we possibly fulfill for her, tucked away inside that little screen or off wherever we were calling from? Could we go to the tall cupboard in her kitchen and get out her pop tarts? Could we swoop her away on an outing to the park or the mall in Opa’s car? Clearly not, so most of our calls were quickly curtailed when Aida discovered the red “End call” button and simply activated it immediately.

So the email idea was more about teaching her that she could converse with people that way, than about drafting messages that use proper English grammar. And in fact, the key to her learning turned out to be letting her talk to me the way she always does. The first email she sent me – that wasn’t empty – said “Mom Sunday when.” I understood this perfectly as a question about when (and if) I would be picking her up for an outing the next Sunday, and I answered her right away. “Sunday 12:00 PM mom car” I got in reply, Aida confirming her upcoming weekend appointment directly at the source. It was one of the most satisfying conversations of my life.

*****

There was a slight stumble when she changed schools this year. The new team had her IEP and saw the goal about emailing, but didn’t quite understand how to apply it on behalf of my 19-year-old daughter.

“Hi Mom,

I started my new work at school today.

I am wiping tables in the cafeteria and putting away chairs.

Miss G. and Miss M. said I did a great job!

Love,

Aida”

My own missive that evening to her teacher was more authentic. “I absolutely know you didn’t mean it this way – but that email purporting to be from Aida was offensive.”

Aida has taught me something valuable about direct, pared-down communicating. And she is teaching her new school team something about respect for their adult students.

*****

Somewhere in the past few weeks, I had set up text messaging on Aida’s iPad, and shown her how, when she sent something from there it showed up on my phone, and vice versa. I figured we’d work on this skill again. And again. And probably for a year or more before seeing results. But here she was, teaching me to have a little more respect for her abilities.

Thursday yes mom

Tomorrow swim yes

I answered her with two texts of my own: that I would see her not on Thursday, but on Saturday for lunch, and that she did indeed have her swim lesson the next day. I even threw in a swimmer emoji just to blow her mind a little (Mimi always appreciates my clever use of emoji like the kids do, ha-ha).

Saturday mom, Aida replied, before, I’m told by her house staff, putting down the iPad to watch TV. Satisfied and able to relax at last, after a long afternoon of asking them over and over when she would see me again. What a powerful thing a few simple words can be.

 

 

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