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When Grace was first diagnosed, we believed she was cognitively impared (aka “retarded”). And, you know, I was ok with that. I thought “That’s cool. She’ll just get pampered and loved and taken care of forever and she’ll never know the difference.” To some, the idea of your disabled child being mentally impared as being a good thing won’t make sense. But I found it a relief to think that she wouldn’t be fully aware of the loss of her body. Then I met Carlie (if you haven’t seen her story, click the link and watch before you read on). When I watched that, I sobbed. Oh, man, I cried so hard. I began to wonder if Grace was truly ‘in there’, too. By all appearances she seemed clueless, but was she really? Or was she just locked in to the prison of a body that doesn’t work?
Although the medical community has classically believed that Rett means mental/cognitive impairment, we’re finding that this is simply not true and, frankly, archaic. I recently had the immense pleasure of Skyping with the brilliant Steve Kaminsky, chief science officer of IRSF. I asked him “is there any proof that girls with Rett aren’t level with their peers in terms of cognitive abilities? Can you point me to any studies that suggest this?” His response was, “Absolutely not. We’re just not smart enough to measure their intellect yet.” We went on to talk about the measurability (or, rather, immeasurability) of data and the need to recognise that we simply don’t have the tools to get into their heads yet.
And before you shout “eye gaze!” at me, let me say that yes, there is eye gaze technology. But the steps needed to train a person to use that to effectively communicate are great. You don’t just plug-and-go.
So back to my story. When I watched that story about Carlie and allowed myself to wonder about Grace, I started testing her. When she was very little and still had a bottle, I hesitantly would ask (expecting no response) “where’s your bottle?” and no matter where in the room her bottle was or how long it had been since she’d last seen it, Grace ALWAYS (without fail) knew where her bottle was and pointed with her eyes. So I was like “hmm. Ok. Maybe she’s smarter than I thought.”
A few months ago, I tried another test. I put her food down and said “Grace, you can have another bite when you lift your legs.” Again, I expected nothing to happen. I wondered how she would even know what legs were. I never gave her an anatomy lesson. How could she know? And immediately, her legs shot up.
Since then, we play the “Legs up! Legs down!” game and she loves it. We don’t warn her it’s coming. We don’t point to her legs or demonstrate. We simply say it and she does. You can see Grace playing ‘legs up’ in the video below.
I think a big part of raising a child with Rett is not dumbing things down for them. I talk to Grace all day long. Just like with my other kids, when I put her shoes on, I say “Left foot. Right foot.” and whatnot. I’m always narrating our lives and so I know that Grace knows what’s up. She’s super smart and I firmly believe that she’s level with her peers. Perhaps not in certain ways. Like she may not be as smart about cause and effect or manners or playing Angry Birds or the other things 4 year olds know by doing and experimenting with life. But she isn’t impared. The bits are working, we just need to learn how to make the most of them and bring to world to her.