On love and space freighters

4

March 9, 2013 by whirlyjoy

MimiILYYesterday evening as I was heading out to meet a friend, I signed goodbye to Aida where she sat at the table with the sitter, and told her I would see her in the morning. She lifted up her left hand in a quick “I love you” sign – so quick I would have thought I imagined it, except for The Fabulous Ms Serene breaking character with a very excited: “I’ve never seen her do that!”

Aida never had done that. She’d repeated the sign back to me once or twice, with a nonplussed expression on her face as she did so, clearly unsure of the purpose of this particular bit of communication. Yesterday is the first time I’ve seen her spontaneously sign “I love you” to anyone. In fact, as far as I know it’s the first time she’s used language to convey any kind of emotional meaning – years of trying to teach her to “use her words” (sign language, PECS pictures, her iPad app – anything at all!) to express her frustration, sadness, anger, happiness and excitement have resulted in exactly… zero unprompted samplings so far.

And now, out of nowhere, an “I love you”?

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To some extent, I have to ask myself why this means so much to me. There’s a selfish aspect to the profound melting pleasure I’m feeling about this, surely? Our kids aren’t put in this world to feed our emotional needs – we, as Mimi would remind me, are here to feed theirs.

And from a practical standpoint there are plenty of much more “useful” skills that Aida still needs to develop – like making it through a visit to the bakery without trying to snatch any pastry she can get her hands on – or just making it through the night with dry sheets.

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I suppose the practical is front-and-center in my mind lately, since the past month has been pretty much devoted to the special education paperwork panoply. Every year her school team of teachers, therapists and other professionals meet to draft her new Individualized Education Plan – IEP – that’s supposed to be the blueprint for what we think she should learn over the next twelve months, and what services and supports she’ll have to help her do so; and this year her once-every-three-years full “reevaluation” qualifying her for special ed services also came due. So for much of February I was buried in team meetings and “measurable annual goal” definitions and “present levels of performance” and the mounds of official “prior written notices” that have to accompany each and every action (or lack of action) made by anyone throughout this process.

[These paper trails in Aida’s case alone must reach to the moon and back by now, for the eleven years of schooling she already has behind her. They’re meant to be a safeguard to ensure she’s really receiving the education promised by law – and yet when she spent two years in a classroom with the teacher Mimi baptized Mrs. Grindelwald, who made no attempt to teach her anything and should have been set out to pasture (or the glue factory) years ago, all she had to do was check off the “some progress made” boxes across the board on her progress report – no documentation of progress was necessary other than the teacher’s statement – to zap my legal complaint into ashes – poof!]

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I have no idea what Aida understood of what she said – what her conceptualization of “I love you” is, why she chose to use it at that moment and with me. Years of excruciatingly slow progress make me skeptical and wary of each tiny step forward; I know very well that one use of a given sign doesn’t mean she’s crossed the threshold into mastery of a new skill.

And yet… this one tiny action – a flick of the fingers, literally – is a sign of something much bigger.

174x108

174×108 (Photo credit: Wikipedia)

For fourteen years, she’s been contending with a maelstrom of sensory overload that sometimes keeps her barely able to register present circumstance and physical need. I picture being in her brain as a little like navigating the Millennium Falcon through that asteroid belt that once was Alderaan – tons of debris bombarding her from every direction, so that 95% of her mental effort just goes into coping with the present moment.

The way I see it, everything we’ve worked to teach her – every hard-won word she’s learned to understand or use, every sensory intervention aimed at increasing the length of time she can functionally interact with the world each day, every drill with timer, clock and calendar to organize her life into manageable chunks of experience – these have gradually helped her power up deflector shields she can use to block out the chaos and shape some of that swooping rubble into stable ground.

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Next fall Aida enters ninth grade, so in addition to the usual IEP season’s worth of meetings and paperwork, I’ve been visiting high school programs this past week.

When I toured middle schools this way, three years ago, it brought me face to face with what typical middle schoolers are capable of – their dreams and quirks and fears and enthusiasms were clear to see; they toured the schools with their parents, but with an independence of mind and attitude that opened my eyes in a whole new way to what Aida was missing, and sent me into one of the periods of fresh grief I’ve had to learn to navigate parenting a “special” child. Granted, most of these 11-year-olds were mainly concerned about what the school lunch choices would be, and when they would get their lockers assigned – but how I ached for Aida to be able to ask questions like these!

My experience this time around is a different one. I walked in to the first high school wondering how my baby girl would ever fit in with all these big, gangly pseudo-adults… and the shock was realizing she looks just like the rest of them. When did my child grow into an ungainly teen who, on the outside anyway, will blend in perfectly with the high school crowd? This had me feeling entirely disoriented on that first day of visits, when even distinguishing students from teachers was difficult. At one point I was talking to a teacher when she greeted a very tall, curly-haired young man just entering the classroom; I took him for a staff member at first – only when he strode right past us to bump up against the far wall and just stand there for awhile with his forehead leaning against it did I realize my mistake.

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I know that Aida feels affection towards the people in her life; I know she asks for me, sometimes very intently, when I’m not with her, and that her happiness when she sees me is certainly not because I spoil her particularly – I work her at least as relentlessly as the many teachers and therapists in her life. In the years that we’ve been winning her back from the autism she’s slowly regained the ability to laugh and cuddle and interact in playful ways – a far cry from the outdated stereotypes of robotic and withdrawn autistic kids, that did kind of fit her for a couple of years, early on. I have no doubt of her ability to feel love – why does the fact that she can express it cause such mind-blowing joy?

Because that ability to pluck an emotion out from the whole swirling muddle within ourselves and give it meaningful expression, such as to take an amorphous feeling and encapsulate it in a word, is one of the mysteries that makes us human.

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ILYcardFor all the time and energy I’ve spent over the years making sure Aida is in a good place at school, crafting IEP goals with care to try to usher her slowly forward on some continuum of development, praying that the people responsible for her when I’m not around understand what powerful potential lies inside my baby girl and are willing to put in the work to help her realize it… In the end, getting her from There to Here is navigating the complete unknown.

There’s no series of behavioral or learning objectives that leads up to feeling love and being able to tell someone about it. There’s just years of caring and hard work by many people, helping Aida build an understanding of this crazy world little bit by little bit – until one day something clicks, one small additional facet of a sense of self, and her theory of mind takes a tiny tumble forward into feeling something with clarity, and being able to name it.

And that’s how a flick of the fingers opens up a vast new world of possibility.

4 thoughts on “On love and space freighters

  1. dea33 says:

    Wow!!! It’s huge!!! And you covered the scope of what it all means beautifully.

  2. Tina says:

    That is so wonderful!!! Thank you for sharing your beautiful story (I always look forward to them).

  3. Wow, Joy this is amazing! A huge step for your daughter. Yes, our children aren’t here to fulfill us emotionally, but they do affect us as we have so many desires for them. I’m sorry the IEP stuff has been so gross. We are just moving into that this spring and a new eval for the boy. Praying for you and your girls afresh today!

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