Saturday, May 9, 2009

What About Me?

Per usual, my reading list has been heavy on the fiction lately, and all from the library. I don't hear the siren-song of autism-book addiction quite the way some of my blog-friends do! Every once in a while, though, I do get seduced into picking up an autism-related book. And then I learn interesting things. And then I have to do a book report, 'cause I report out on everything else autism-related around here...

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!


datri said...

Sigh, we'll we're in the same boat, since the little list there applies to us as well. So far things are going pretty well, I suppose. Then again, Laurie has her own spectrum stuff to deal with, so I wonder about that as well.

Lynda said...

Siblings..What an interesting and possibly loaded topic all the way around. I have many, many thoughts about siblings of developmentally disabled children. Too many to put into a blog. And ones that I'm having difficulty putting into written word. Perhaps a discussion over coffee could be squeezed into the calendar JoyMama.
I had a family in my daycare several years ago who really got me thinking about this very topic. I had all three of their children in my care. The oldest son was typically developing (I have issues with that term since in my profession I see the kids as individuals with their own strengths and difficulties. But I know ya'all know what I mean by it), the disabled middle sister, and the youngest typically developing daughter. For lack of a better word at the moment,the parents are "grooming" their other two children to care for their disabled sister. This child has very significant delays in every category, and they know she will never live independently. So they made the decision to give the responsibility of caring for their daughter to their children instead of a group home of some kind. So obviously, these children have many more responsibilities that other children in families with typically developing children most likely don't have. Shortly after this discussion, I was talking with another family who had a special needs child with me. They relayed a story of a family they know who had recently put their daughter in a group home type facility so she would be safe and cared for as they aged.
Soooo, where am I going with this? Basically, I think you need to do what is right for you and your family. And with anything else, that can involve some trial and error. Is it best for you to have Rose put her things away so Joy can't get at them because that's the way Joy is and you know she's going to get at them? Or do you figure out a way Rose can keep her things out? Do you try and praise each daughter equally, or do you accept that Joy is just naturally going to get more pats on the back?
Finding your own family balance is the important thing. And knowing that yours may not be the same as your neighbors.
I may have mentioned in the past that I am a big Rick Lavoie fan. One thing he says is that being fair does not mean everyone is treated exactly the same. Fair means each individual is getting what they personally need to succeed.
Personally, I need a new swing set, sippy cup caps and a bookkeeper! And a pat on the back every once in a while is nice too. ;-)

JoyMama said...

OK everybody, check out the above comment by Lynda.

You may now proceed to envy the Joy-family, to have such a person as daycare provider!!! (There's your pat on the back, Lynda. And well deserved!)

While I can understand the whole thing of grooming sibs as caregivers, it does make me think of the book/movie Like Water For Chocolate -- remember the one, where the youngest daughter is doomed by family tradition to remain single and care for her domineering mother until she dies? (And it worked out so well in that story. Or not.)

There's so much that could happen with Joy in the years to come, it's premature to forecast too far. Lots of trial and error between now and then.

I do like the point, though, about the meaning of "fair"!

Mimzy said...

In an old job... I used to be a play buddy to the siblings of kids who were being seen at the clinic I worked for. It was a chance for them to get some one-on-one attention from someone outside the family. In the same way Joy gets so much special attention all the time. The kids I worked with all really appreciated the attention and I still keep in contact with one girl who was being most affected by her sibling. Finding a buddy like that for Rose might be something to think about. Someone just for Rose and not for Joy? (not that she 'needs' it, but it might still be something fun and special for her)

Mama Mara said...

My modem is finally sorta letting me see other folks' blogs without suddenly freezing up and dumping my connection, so I'm catching up on blogreads this a.m. You are my first stop.

May-ahn! How did I miss this book *pant-pant covet-covet*? Can't wait to get it for myself. With two boys dealing with each other's disabilities AND COA issues, it sounds like a must-read.

I've really missed your blog.