Disability²

With all great intentions, I created this blog to write about issues affecting parents with disabilities. The problem is that not everything I want to say is directly on-topic. I just get out of the habit of writing. I’m going to attempt to reform my ways and get this blog active again, and get as much in about parents with disabilities.

Part of writing about parents with disabilities is writing from my own perspective of being a parent with a disability. For nearly the last month I have been battling a severe eye infection and corneal ulcer that resulted in a cornea transplant last week. This has meant that I have been home, and directly involved in the afternoon homework battle with my middle daughter, Asiza, who is eleven. Because I can’t see her worksheets, I use attendants to help her with the worksheet part of her homework. However, each day she also has a spelling and reading assignment. I have, much to her chagrin, become more involved in these portions of her homework routine.

I try hard to use natural and logical consequences with my kids. Even though they all have developmental disabilities, I find natural and logical consequences to be effective most of the time. Their effectiveness is typically directly correlated to my ability to implement them, and I frequently fail and threaten all kinds of vile punishments that both the kids and I know will never be followed through on.

This afternoon I didn’t feel up to a word by word battle over writing sentences using her spelling words. I know when to pick my battle. I know the kid really doesn’t know how to construct a sentence. While I could walk her through it for all 12 of her words, I’m not convinced she is really learning sentence construction, and I know that I am not. Like I tell Asiza, “I already passed 4th grade.” (And for the record, I hated my teacher, and I hated school, and it’s really a period of my life I prefer not to repeat.) I really didn’t care that her sentences all begin “I like. . .” or that “I like stormy” and “I like twig” really don’t make sense. They were done. I was definitely picking my battles today.

I really didn’t want any battle, but I simply had to draw the line at the reading. For a long time it was a struggle to get Asiza to do anything more than open a couple of pages in 10 different books during reading time. For the last several weeks, I have been insisting that she actually pick books that she can read, and trying to work a bit on comprehension with her. After the daily battle to pick a book within her reading level, she quickly read aloud a few lines on each page, skipping 10 or 12 pages each time she turned a page. After about 5 minutes, she stops and claims she is done. Still in pick my battle mode, I said fine and told her to get another book. This was not expected, but she did get another book. Five minutes later, she exclaimed “done!” again.

I knew that she wanted to go outside where her sister was helping pick up trash in the yard, but I decided that was not one of her choices. I calmly explained that she had two choices: read for 30 minutes, or go to bed. She read a few lines on another page and again exclaimed “done.”

I again explained the choices, and told her that a failure to read would mean the default choice would be bed. Clearly she did not take this to heart. After several minutes of opening and closing the book, slamming it down, pounding it on the floor, and far too many warnings from yours truly, I told her that she made her choice: go to bed.

She jumped up, put her book away, and headed outside. I explained outside was not a choice and that she needed to go to her bed. I told her that I didn’t care what she did there, but she needed to be on her bed. My smart girl said, “I didn’t choose to go to bed.” I again explained how choices work, and by not reading, she choose to go to bed.

“You’re not fair.”

Oh yeah, I was more than fair when I watched her sulk, and I explained this.

“I didn’t choose this, and you said I had a choice,” she protested.

“See, you are smarter than you act,” I told her. She didn’t get that but asked if she could read then watch TV. No, but you can read, play a game, put together a puzzle, play with your dolls. . . It was a long hour before dinner while she was cloistered in her room.

She was allowed out to go eat dinner. She isn’t a super speedy eater, but she is relatively fast. The child who asks me to cut her noodles because they are too hard to cut, had managed to turn a plate of lasagna, salad and bread into a hour long meal. I was not picking that battle. However, when my aide came in to my room to tell me that she was trying to cut a 1″ square of lasagna into 10 bites, I again said “you are smarter than you act.”