When a person can’t speak or doesn’t communicate to any great degree in an alternate form, people frequently assume that they must think, feel, or prefer what they do themselves. Without guidance or stated preferences, we often instill our own likes, dislikes, desires, and inclinations onto the non-expressive person. You can imagine that when you have three, four, even five or more people providing care for you that this can be not only aggravating to the care recipient, but confusing as well.
Now that Lauren will soon be living in her own home, I have become concerned about protecting her preferences and routines when I will no longer be there to oversee them on a daily basis. As much as I want her to have the opportunity to explore new things and experience variety in her life, she must have the right to a basic routine, personal style, and food preferences. Sure, the acquisition of these preferences in Lauren’s life have, to some extent, developed from my own preferences – it’s a mother’s prerogative. But many of them are also part of Lauren’s world because of the culture of our family. Every family has their own ways of doing things – family traits – so to speak. We like a neat, uncluttered home. We eat our fresh, unprocessed, unboxed, meals on a basic schedule. We don’t turn our outdoor Christmas lights on till Thanksgiving night. We recycle. This is how we’ve chosen to live. Lauren has the right to continue our traditions and way of life in her own home, as well as have her personal opinions and preferences respected.
So how do I make that happen for her? How do I attempt to guarantee that her voice is heard when she has such a limited ability to express herself to her caregivers? Manuals – I’m developing manuals. They will cover a variety of subjects including her food, her clothes, and her personal care. I am hoping they will be informative, succinct, offer guidance, and be easy to use. And, I’m hoping that they will speak for Lauren in a manner that will guarantee that her quality and style of life will be protected.
Next week, I’ll go into exactly which manuals I’m writing and what they will cover.