‘I Like it When…’

Dear Caregiver,

Thank you for talking to me when you dress me in the morning. It makes me feel less uncomfortable about needing the help, and it makes me feel like you don’t mind helping me.

Thank you for not sharing with everyone else how many times I wet my pants or had a bowel movement. After all, I don’t know how many times you went to the bathroom today. Sometimes I don’t smell really good. I am sorry about that and wish it could be different. It makes me feel good when you don’t complain about it.

Thank you for feeding me my meals at the appropriate temperature. Yes, I will eat it even if it is not the right temperature, but only because the alternative is to go hungry. And while you are feeding me, I really appreciate your talking to me instead of the people you work with. I would like it if you told me about the movie you saw last night or how much you like the weather outside. When you only talk to the people you are working with, it makes me feel like you forget that I am here. I really like it when you wipe my chin carefully with a napkin instead of scraping off my chin with a spoon. It hurts my chin and makes me feel like a baby.

When you talk to me before you touch me or my wheelchair, I feel less scared. Sometimes I get shoved around without even knowing where I am being pushed. I like some surprises, but mostly on my birthday.

Most of all, I like it when you ask me what I would like to do and try to figure out what my choice is. It makes me feel like I matter. Even though it is not easy to do, I try hard to communicate with you. Sometimes I smile when I am comfortable. Sometimes I fall asleep right away if you lay me down just right. These are the ways I let you know what I like. If I am frowning, crying, moaning, or yelling, it means something is wrong. I wish I could tell you what was wrong so that you don’t get irritated with me so often, but I don’t have that luxury.

—Reprinted from Breaking Barriers, Summer 2007