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Saturday, March 8, 2014

Help! I'm Trapped in Here!

Let's set the record straight, shall we?

My daughter Miriam is a goofball.

So am I.

No surprises there.

Our entire family has accepted the fact that because we have a child with such overbearing issues, we have adapted by being goofy hermits. We have turned inward, when we would have been more socially involved. 

It's a life both chosen and given to you. People don't associate with us like they used to. We're also less inclined to go anywhere, because it's a real pain in the butt to get everything on and belted and rolled in and snapped closed and filled up to go somewhere...only to face little-to-no parking, too-narrow places or inaccessible buildings, equipment malfunctions, emotional meltdowns, and the constant, constant, constant non-verbal cues by strangers. People love to stare.

Welcome to life.

Yet there are things we can control. There are things I have learned about myself since this adventure began, things I do not like. When you see how others treat your children, even innocently, you begin to see how you treat others. 

Case in point, from the "No Duh" files: 

We label each other. Always. 

This is an instantaneous behavior, ingrained in our need to interpret the world. It's the whole "book by its cover" phenomenon, which is something we all do but, with care, adjust as we get more information. 

At the same time, we have a deep-seeded need to be understood immediately; we don't like people to misjudge, mislabel or otherwise make assumptions about us.

I prefer "Angel Drawers" myself.

It is easy to treat children with cerebral palsy as very young children because, well, they act like it. They drool. They use sounds instead of words. They use involuntary physical motions more common in babies. They tend to smile a lot. Emotions swing wildly. They are amused by most everything. 

Do you exist? Then you'll make me smile.
Many people think of these kids as intellectually inferior because they do not exhibit the same outward signs as your typical Harvard graduate. 

(To be fair, however, put a couple of tequilas in that same Harvard graduate and watch how they behave.)

It is hard to tell Miriam's intellectual age, because she speaks a language dictated by her disability. If she cannot use traditional verbal and non-verbal means to communicate, she is forced to use what she has. If "what she has" means using physical skills that are more infantile, it's because that's the part of the brain she can access. 

It is easy to assume she, and others like her, is more like a "baby." Therefore, we find ourselves treating her like one.

Yet the recent addition to a new Communication Device (aka Voice of the Borg Queen) is revealing there may be someone very different trapped inside that lil'bitty head of hers. And not so different. We are beginning to hear things we always felt about her, but she could not express.

An early test of the "Voice of the Borg Queen."
We may have a very polite girl.

Are we reading into things? Are we taking our desperate hopes and misinterpreting coincidence into reality? 

Only time will tell.

*ADDENDUM: A friend shared this link with me. Very different issue on the outside, though very much the whole point of this post. Again, it shows only time will tell.

Reaching My Autistic Son Through Disney


  1. was that yur daughter at the end? no matter who it was she was amazing though it makes me so happy to see people communicate when they are unable to without help. truly amazing!!!! <3

  2. Yes, that is Miriam. She is learning to use this device, and it is proving to be pretty amazing. As she continues to learn, I'll continue to share her discoveries.