Anyway. The recent read was What About Me? Growing Up with a Developmentally Disabled Sibling, by Bryna Siegel and Stuart Silverstein. Siegel is a developmental psychologist (and imaginary BFF of Mama Mara) who has written a number of books on autism; Silverstein is a pediatrician and the older brother of a sibling with autism. So even though it's not directly billed as being about sibs with autism, that seems to be the jumping-off point.
So I found myself first gulping and eventually chuckling my way through the second chapter, about the research on sibs of developmentally disabled kids. I had no idea that we (and Rose) were so much behind the 8-ball. Consider:
- Research suggests that having a handicapped sibling is consistently more difficult for older sisters (p.28)
- Overall, girls tend to be more often negatively affected than boys (p.29)
- Adjustment can be more difficult for same-sex sibs (p.30)
- Sibs closer in age to the disabled sib tend to experience more distress (p.30)
- It helps to have a larger family - more sibs to share the experience/load (p.31)
Add to that the research that families who planned their children carefully (me, plan? ME?) tend to feel a greater sense of unfairness when a child turns up with a disability, and that younger couples are often better able to cope than older couples (40-cough isn't OLD, is it?), and that authoritarian parents tend to have an easier time providing the sense of structure that a disabled child (especially with autism) may need... Well, we're just a mess waiting to happen, I guess. At least we're not single-parenting ("Without doubt, the most difficult situation to cope with is parenting a disabled child as a single parent") -- my hat is off to my blogfriends who ARE.
Except that, I actually think we're doing OK. So far anyway.
Rose seems like an exceptionally healthy kiddo.
I did pick up some interesting things to watch out for. The fundamental question, I think, is whether we're [un-necessarily] requiring things of Rose that we wouldn't require if Joy didn't have autism. We'll need to be careful about asking her to do too much Joy-care; right now it sometimes takes the form of "watch your sister for a minute while I go put the laundry in, OK?" Definitely something to keep to a minimum.
The other one I catch myself on is a little more insidious. It has to do with the fact that Joy is likely to do damage to Rose's stuff that gets left unattended in the open. So if Rose leaves a bunch of markers and her artwork all over the kitchen table and walks away, Joy is likely to grab the markers and crumple the paper. Should Rose have put the project away? Well, yeah. But most kids don't get such intense natural consequences for that kind of omission. We need to be sure we're sympathizing appropriately for all the wreckage, rather than solely reinforcing the lesson of, "Well, that's what happens when you leave your stuff where Joy can get it."
I also liked some of the general strategies that the book offered: Things like using humor to reframe sticky situations with Joy, giving Rose alone-time with parents, and being sure to give Rose her fair share of praise for accomplishments (seeing as how Joy gets such lavish praise for little things like putting on her own bib or saying even a single word).
The book also made an interesting comparison with the adult-children-of-alcoholics situation. The comparison has kind of an uncomfortable feeling about it, and as the authors point out, Twelve-Stepping obviously does not apply! but I did find myself nodding at a couple of the points. Both neurotypical sibs and COAs find themselves in situations of high responsibility, having to give up the right to be childlike at an early age, placing their own needs second, being unwilling to bring friends home to play, keeping a lot of bad feelings inside... very interesting.
Next up: Horizon (The Sharing Knife, Book 4) by Lois McMaster Bujold. Back to the fiction for me, friends!
