July 30, 2004
What You Get
It isn't always pleasant taking care of Y. She quite often smells; I mean a nauseating, feel the bile in your throat smell. She isn't toilet trained, and that contributes; she also has bad teeth, most likely owing to the difficulty in 1)brushing and examining the teeth of a child who probably can't understand "now spit into the sink" "open your mouth" 2) her digestive problems; she vomits often enough that if she only vomits a little and does it no more than twice that particular day, I no longer think it something to call to her parents' attention.
Of course I have to clean her up then; also not a pleasant task.
And those hands I am holding? Where have they been?
She doesn't talk; she makes various vocalizations, sometimes quite loud, but nothing even approaching the babbling of a baby.
It is just as often boring; there are days she does nothing but lie on her bed, sucking her thumb. Even if she is doing something, what she is doing is twisting her finger against her thumb, or smacking herself in the side of the head, or occasionally clapping her hands.
Getting her up the stairs can be a chore. She might sit down at the bottom of the stairs and then I have to pull this child, who is almost as tall as I am, back up to a standing position. Worse, she might decided to sit down on the stairs. Or lean back, almost causing us both to fall down the stairs.
She grinds her teeth.
She is a messy eater.
And to top it off, it is extremely doubtful that I register much in her mind at all. Someone could come into her life tomorrow, do exactly what I do, and she wouldn't notice I am gone.
Do you want this job? For what amounts to a little less than $5 an hour?
Rivka of Respectful of Otters asks a question. What would you do if the Prenatal Diagnosis Fairy had some bad news. (Please read her post. It is extremely well written and potent.)
Unlike Rivka, Y is likely to remain as dreary as I have described. Most likely she will be as she is now for the rest of her life. There is not a whole lot of hope here for her to begin living anything more than a completely dependent life.
What if the Prenatal Diagnosis Fairy was able to determine, yes, this child has autism.
As of now (to the best of my searching abilities) there is no genetic testing for autism as of yet, though as the doctors answers discloses, there is genetic testing for some diseases which have autistic behaviour. But if there were?
I am not her mother, and that isn't something I could decide for her,though I can guess she would welcome her daughter into her arms anyway.
But as for me, am I glad Y is here?
Absolutely. Y has taught me many things.
She has taught me the value of giving without any expectation that of receiving back; no gratitude, no acknowledgement even that what I do for her is appreciated or noticed in anyway.
She has taught me to feel triumphant in the little things; if she looks at me and sees me, if she claps her hands after I have done so.
She has taught me patience; it can take a long time to teach and autistic child anything.
She has taught me that I can give, and give and give and that by giving I grow stronger.
She has taught me to appreciate the abilities I have.
If she were ever cured I would dance in the streets till I dropped from exhaustion, sing till my voice gave out. I would see such elation that it would be like tasting a bit of heaven.
Do I wish she were born healthy of body and mind? Yes, of course yes. Could another have taught me these same things? Yes, of course yes. But Y is the one who taught me these things, not as mere adages but as truths. And for that, I am glad she is in my life.