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Autonomy is a Kind of Monster, Too

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On Friday, after having lunch with Schuyler, we stopped by, upon request, to see her special ed director. Nothing was amiss. Someone had made off with the director’s copy of my book, so she wanted the three of us to come by and autograph another copy for her. After Schuyler sprang off to class, we stayed and talked for a bit. Before we left, we scheduled Schuyler’s next IEP meeting, and we were given some surveys to fill out before then.

Surveys for us, and surveys for Schuyler.

Simple surveys, nothing dramatic. And yet, in reading through them, we both felt an uneasy fear creep into the room, a fear that had certainly visited us before. Indeed, I’m not sure it ever really left. At best it might have stepped outside for a smoke now and then before coming back in and settling on the couch for the long haul.

These surveys addressed that most enigmatic of all of Schuyler’s monsters.

The Future.

Do you plan on the student living with you after graduation? If yes, do you need information on Agency Supports and/or Medicaid, information on how to obtain Guardianship, information on Assisted Living Facilities?

What is your vision for the student after high school (ie. go to college, trade school, rehabilitative services, etc.)?

Schuyler is thirteen years old, which means that these questions would seem wildly premature for a neurotypical kid. Well, comparing aspects of Schuyler’s life to those of a typical girl her age is an exercise that usually does no one much good. Schuyler isn’t neurotypical. She’s isn’t like other thirteen year olds. She’s not all that much like other kids with neurological disabilities, either, really. She’s far behind in some ways, innocent to the point of naiveté, but also wise beyond her years in a lot of areas that matter a very great deal. In a sense, the question of The Future is one that has occupied us for the better part of a decade now. The only difference now is that we’re doing so in an official capacity.

There are pieces of that future that are becoming clear. Yeah, she will live with us after graduation. Will she catch up in school enough that college would be an option? I want the answer to that to be yes, I want to tell you that she’s delayed, not developmentally disabled, but of course I can’t. She might catch up, she might clear away some of the fog. I personally believe that she will, but it’s not an objective belief. It’s a father’s belief, and I acknowledge that it may be overbelief. If so, I embrace it fully, without qualification. I think she’ll be ready for the world one day, and on her own terms.

But not as soon as her peers. And maybe never in the way that they will be. Schuyler’s differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she’ll be okay with that for a while.

And yeah, I suppose if it comes down to it, her future may very well include us retaining legal guardianship. I’m not ready to state that unequivocally now, five years before she turns eighteen. The thought of assuming legal guardianship of Schuyler after she turns eighteen feels like we’re stealing something from her, taking away something that we’ve all wished for so desperately, the very independence we’ve worked for so hard.

But the thought of NOT doing so? Terrifying. And more to the point, it feels like the worst possible dereliction of duty possible. We know in our hearts how unlikely she is to be ready by the time she turns eighteen. Admitting that feels like a kind of betrayal, but nothing like the alternative would. When Schuyler turns eighteen, the three of us are going to have to make a very hard choice, and none of the possibilities feel exactly right.

Guardianship seems a likely outcome, and just saying that out loud brings a black sadness that I can’t bury. I leave that sadness sitting conspicuously in the corner, untouched for now. We’ll face it one day. We don’t need to just yet.

There are questions on this survey for Schuyler, too. Five or six pages, actually.

I am interested in a career in the field of… (Followed by a daunting list of choices.)

Place a check by the traits that you feel are your strengths. (Also followed by many, many choices.)

After high school, who do you plan to live with?

Well. I’ll be curious to see her answers. “What do you want to be when you grow up?” is a pretty loaded question for kids with developmental disabilities. Judging from her early reactions to this line of discussion, the fact that those choices will be all hers is a daunting thought for Schuyler.

I’d be lying if I didn’t confess that the thought of handing over The Future to her is pretty terrifying to me, too. You can’t be surprised by that admission.

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10 Comments
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