Reading Assignment

Before my writing partner, Shahla Alai-Rosales, headed out of town for a few weeks, she left me with a reading assignment. (Once a professor, always a professor, she gave me more than I think I can consume in the time period allotted.)

We are looking for books that could be competition or complementary to the book we are planning to propose to a few specialty publishers — a book about decision-making for parents and caregivers.

For those of us loving and supporting someone with a disability, those decisions can feel pretty high stakes sometimes. Our kids aren’t as resilient if those decisions end up being mistakes. Most of us expect to have some role throughout our child’s life in that decision-making, but it’s easy to get in the habit of doing more than you should.

(Brief digression: Some years ago, my husband wanted me to take over driving while he tended to some other task in the truck. For some reason, he kept barking out directions and reminders to me — something he did not normally do. I drove past the on-ramp to the freeway and he asked me why on earth did I miss that. I told him that for the past several minutes he had bossed me around so much he just took my brain away. I wish I could say we laughed then, but I can’t, and that is the end of this digression, since I hope my point has been made.)

One of the books is by the Turnbulls, et al., from the University of Kansas. Heavy hitters in the world of disability studies and powerful voices when it comes to parenting and advocating. It’s title “Disability and the family: a guide to decisions for adulthood.” (1990: Paul H. Brookes Publishing)

The layout looked like other books I had to consume in grad school (unbearably dense), but it belied it’s content. It’s readable and full of terrific information.

It didn’t take long for me to get hung up on a page that spelled out the steps of a decision-making process. And they are:

Defining the problem or need
Evaluating and choosing alternatives
Communicating the decision to others
Taking action
Evaluating the outcome of the action

It’s pretty easy for me to imagine Sam being able to define a problem or need in many situations. But there are scores of situations where brainstorming and evaluating alternatives would vex him.

For example, Sam wants to move into an apartment. But we have done some computer searches and I can tell he has no idea how to find a place that’s safe, appropriate and economical.

My first apartment choice was an unqualified disaster. My roommate moved in three months earlier than me, enough time to set up patterns for her cats to urinate on the carpet (the odor made your eyes water) and to leave dirty dishes long enough that the roaches swarmed as soon as the lights were turned out.

I complained. She made some changes, but ultimately I couldn’t get out of there fast enough.

The next place wasn’t much better. A firetrap on the second floor, with a neighbor who cooked on his hibachi at the top of the stairs every evening.

The next place after that was a house I shared with two other girls. It was a lot better, but not without its inequities. I allowed them in order to get along.

It helps to know what to think about. He’ll need more help than the admonition I could get away with making to my other kids, “don’t make the mistakes I made.”

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