Wednesday, April 18, 2012

communication

The older Sadie gets, the more communication gets to be a larger issue.  People look to me to be her voice... her voice for all aspects of her total care.  "Should I feed her, should I change her wet clothes, should I change her pull up, should I get her a snack, a drink, a toy, a game, shoes, socks, coat, sunscreen, should I stand by her side, assist her, hold her hand, give her space, hold her, sit with her, create an activity for her?" those are among the few questions I get on a daily, minute by minute, hour to hour basis when someone is caring for her who isn't capable of intuitively understanding the needs of a person, but more especially the needs of a person that can not speak traditionally with their voice.  This is probably the most challenging hurdle I've had to cross with her care givers.  Getting them to see her as a 7 year old and treating her as a person with choices, feelings, both physical and emotion, with needs just like any other child to balance her disability with giving her space has been tough.  I hate that people see her with out the ability to actually have choices and be able to have her wants and have those respected.  She is a person, a human being, a child.... presume competence people.

Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...