Rules

Yesterday was a crazy day.  I only took 2 of the kids with me to church, Rob and KC.  I had a religious ed mtg after church that would go till 2:30. Then at 3 was the final class for Rob's OWL group, a teen sexuality course that our denomination offers.  Parents were supposed to attend the final ceremony part way through the class. So I figured it was better for me to stay at church than to drive 30 minutes home, have a cup of tea and turn and go back to church.  It did mean that Kirsty had to drive to our church in the Big City and pick up KC and bring him home at 2:30.  He could have gone home much earlier but he actually loves hanging out with Robbie and Rob's best friend.  He totally thinks the 2 boys have godlike status and thankfully they are both amazingly good with young kids.  I think Rob's friend sort of enjoys the hero worship that KC so adoringly offers to him.

On the surface it sounds hectic and in some ways it was.  But the hiatus between the end of my meeting and the time when Rob's class allowed parents in to celebrate with them, gave me an opportunity to chat with some adult friends I don't always see or get to have in depth conversations with.  I also got a chance to read.

Our church has decided to have a "community read."  Unlike a book group there will not be sit down discussions at prescribed times.  Instead, a bunch of us will read the book and then probably wear a sticker or something that says "I read. . . . " and try to start conversations with others who might have read the book as well.  It could serve well as an icebreaker for talking with people we don't know and as our church is large enough to need a two service format we are always looking for ways to build community between the two groups of parishioners.

We also decided that the book would be a middle school book. Hopefully parents of "tweens" would be interested but also tween lit tends to be interesting and a fast read.  So people without lots of time to read would also be interested.  Grandparents might want to read to have something to discuss with grandkids --you get the idea.

The first book chosen was Rules by Cynthia Lord. The book is about a 12 year old girl with an autistic brother.  The rules are created by her to try and help her disabled brother navigate a neurotypical world.  I am about half way through--it is a fast read. 

But though simply written it is a book that is hitting me powerfully because of my Chet.  Because his life is rules.  Some of them hang on my fridge.  Oh, we call them 'routines."  But the bottom line is they ARE rules.  Eat breakfast.  Shave.  Brush teeth.  Ask what you can do to help.  Yes, the poster really says all those things.  Because he needs them to.  If they are not written down, or if something happens and they are not done in that order, he gets lost.  Forgets things, wanders around, totally at 6's and 7's.

And there are social 'rules.'  I spent hours acting out social situations with him when he was in 5th or 6th grade.  I did not at the time even know there was  a name for doing that kind of thing (social stories).  I just made up situations that happened routinely and we would act it out until a socially acceptable answer or response became ingrained.  The problem of course, is the gray areas, which is the issue that occupies the female lead character in the book.  I can teach Chet for instance to say "good morning, how are you today" and shake hands.  If the person answers with the typical generic good morning response we are golden.  If they suddenly answer in a different way, his response will be off the wall because he doesn't have a rule for that, a plan that can give him an appropriate answer for every eventuality in life.  There simply isn't one.

I try to give him as many "rules" as i can to enable him to function in the world.  He doesn't get emotions so he has had to memorize things that don't make sense to him.  It doesn't make sense to him to cry over something that happened long ago.  It.Is.Over.   A young child falling down does not respond well to being told "well now you know better and won't do that again. But why?  They have learned now. People don't want to know a physical attribute such as height when they ask how you are.  (he used to answer 'tall')  Since he isn't aware of feeling anything in particular it is not lying to simply say 'fine.'  People want to talk about themselves.  Ask a question they can answer.  etc. etc.

I see Kirsty's embarrassment at his behaviors in the feelings described by the sister in the story.  K has come to terms with much of it, but many times I am still the person who does the outings, the shopping the social experiences that he needs to be guided through. 

And I am grateful that when I am gone and Chet is still here and needs help, that there are 3 neurotypical siblings to share that work.  That love him for the person he is, even when they don't understand him, but that they can share the challenge together and not be bowed down with the burden of his differences the way Catherine in Rules is.