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.

As a consequence - and because we have a child with such overbearing issues - we have adapted into goofy hermits. We have turned inward, when we would have been more socially involved. 

It's a life both chosen and given to you without your permission. People don't associate with us like they used to. We're also less inclined to go anywhere, because it's a real pain 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. That's understandable, because their brains have to process, but invariably these same people make quick judgements.

That poor girl. She's in a wheelchair. She must be retarded.

My response to that last word is better summed up here.

Look, I get it. This is an instantaneous behavior, ingrained in our need to interpret the world. It's something we all do but (hopefully) 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, only time will tell.

Reaching My Autistic Son Through Disney