Saturday, July 04, 2009

Life with Dorian, continued ... .

My developmentally disabled daughter and I spent an unusual amount of time together over the 4th of July weekend. I'd been planning for weeks to include her in (what will surely become) the First Annual Oakland Symphony Free Concert and Fireworks Extravaganza at the Craneway Pavilion. We'd talked about it constantly of late -- when I'd pick her up for the drive to her art center for the day. It was particularly exciting because this weekend would also include the High School Musical at the same venue the following night. Dorian isn't big on symphony (can't hum along too well), but is ecstatic about this tween phenomenon brought to the world by television. She would tolerate the first at my insistence, but WOW! To see Troy and Gabriella of East High in the flesh would be almost too good to imagine. Dorian is now 50 going on 10, and as a fitting cultural event, this is the absolute best.

I'm aware that my conduct and attitude changes radically when she's along. I put on invisible blinders so that others are essentially shut out of my immediate line of vision. I make a subconscious choice -- either I'm with her or in the room with others. If I'm with her the situation demands that I see the experience through her eyes and that adjustments set in place since she was a small child kick in. It's not always possible to remain in my world and bring her along so I learned long ago to opt into hers for limited periods. My intellect slips into limbo; eyes are half-closed; and I move onto her plane for whatever time is required. It's something she's taught me in order for us both to survive in the weird dimension she would otherwise experience alone. I've never fully understood it, but am sure that other parents of the handicapped will understand what I'm struggling to describe.

Dorian is like a brightly-painted Volkswagen in a world of Cadillacs. She has all of the essentials, but none of the extras. The subtleties and nuances pass her by. She can only handle the basics; and she handles them reasonably well, thank you.

As we sat down at our front row table at the concert her first words to Kate (seated directly across from us) were, "tomorrow is my cat's birthday." True. Kate who is the president of the Arts Commission has known Dorrie through NIAD (program for handicapped artists) and is aware of her limitations so took it in stride. A stranger would have been completely taken aback.

Dorian is confident and functions relatively well in social settings. She's always been included in the family activities and trips and displays a rare ability to meet a stranger and immediately set the subject and boundaries of the conversations by stating the ground rules with her first sentence. From childhood she figured out that if she doesn't do so she will be lost in verbal exchanges that she cannot possibly relate to. She found a way to not become lost in other people's words. Makes for some uncomfortable social situations. I tend to find myself putting my hand on her arm or around her waist with the intention of re-directing the interaction. This allows a way to subtly include her while also shutting her down -- so that the other person can both recover from the shock of that first sentence and find a way to respond, or, to find themselves hopelessly lost in talk that is completely controlled by Dorian. She has no understanding that conversations are meant to be two-way and that there needs to be room for the other person to have a word or two. It's all send. No receiving. She is ever creating and managing a social world in which she can function. It's defensive. It's also aggressive.

Not only is the experience emotionally exhausting, but it means that when I take her along I've committed to limiting my own social experience. It means holding her hand under the table as a way of reassuring her that I know that she's being made miserable by the constraints. She is very sensitive and aware that she's being restrained which she clearly resents. She's gregarious and wants desperately to be free to share in the chit-chat around her. It means that I become reluctant to interact with those around us and feel at times that this may be read as aloofness. The more gregarious she becomes, the quieter I tend to be. I begin to withdraw as if by some subtle manipulation I can provide the example for her to follow; a guaranteed failure as witnessed over a lifetime. I've never learned to allow others to take care of themselves in relating to her; as it will be when I'm no longer here to act my part.

I really do understand why we rarely see any of those who people her everyday world of others like her attending public events. It means that when she is with me in these situations, she is always off-key -- different -- odd and out of sync. When she was a little girl I almost always picked her up from school for a weekend or field trip bringing along at least one other child from her world. The practice worked for us. It's the reason I've always been opposed to mainstreaming, but I've never been able to convince anyone of my point of view.

The magic of NIAD (National Institute for Artists and Disabilities) is that Dorian has a chance to function as one of the high-achievers in that special world. Out here in the world where the rules vary greatly, she is always bringing up the rear -- or having her mother holding her hand under the table so that (mother) won't be embarrassed by her brashness and inappropriate though sincere pronouncements about her precious cat's birthday, or something equally as strange.

There was a time during the concert when the orchestra played a lovely medley from The Sound Of Music and invited the audience to sing along. Dorrie lay her head on my shoulder and, blissfully, together we sang every word -- both on and off key -- happily finding a few moments of being totally in sync with the several thousand music lovers around us in that magnificent space.

Happy Independence Day!

Photo: Dorian playing in the Special Olympics basketball tournament last season and competing in a swim meet a few years ago. Of course she was awarded medals; as were all who competed. That's the way it should be, right?

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