Sunday, December 20, 2009
Social Stories and the Importance of Experiencing Rituals
Chanukah is behind us and Christmas is right around the corner. We are a sort-of hybrid family: I was raised in the Orthodox Jewish tradition but have always loved the holiday decorations we were never permitted to have; hence, I am a big fan of Christmas trees, jack-o-lanterns and spooky spiders, and could be easily convinced to array our home in turkeys and bunny rabbits, too. Sharon is a 'mutt' (her phrasing, not mine) whose ancestors include Ukrainian Jews, Anabaptists from Germany, and Catholics from Ireland. Her dad was raised Protestant (his family was not a big fan of either Jews or Catholics); her mom was raised Catholic but by a Jewish mother who never converted; and she and her sister attended Catholic school as kids, celebrated Chanukah and Passover with their Jewish cousins as kids and Christmas at home, and both now identify as Jewish but this is more of a cultural (read: food) identity than a purely religious one. Anyway, since holiday traditions are important to the family, we are interested in sharing these with our children.
The sticky part is that children on the spectrum (or at least Hallie; as the old adage goes, if you know one autistic person, you know one autistic person) don't always 'get it' when you discuss traditions with them. Indeed, it's sometimes unclear to us what Hallie understands when we tell her stuff. She is clearly bright, and she clearly knows so much (to recap again, well before she turned two she identified all letters of the alphabet; could match colors and shapes and identify them by name--though not speak their names; could count to twenty (some of her first words were numbers); and is okay with following simple directions when you ask her to do something tangible (as long as she 'hears' you and doesn't get distracted). But she has auditory processing issues, is a visual learner, and most likely has some variety of Semantic Pragmatic Language Disorder. She still cannot answer simple questions effectively and it's not clear that she gets abstract concepts at all. So, for example, if you ask Hallie what her favorite color is, she'll just tell you what color she is wearing that day. And, if you have just explained to her the entire Santa story (Santa brings toys for good girls and boys; he comes down the chimney on a sleigh that is pulled by reindeers; he eats cookies and milk; and he leaves the presents under the tree) she might a. bring you a stuffed Santa; b. bring you a stuffed reindeer; c. point to the Christmas tree in our living room and say "My tree! I love my tree!" and d. unwrap a present if you are unwise enough to have one under the tree already.
What she will not do is put it all together. So, if you ask her, 'who pulls Santa's sleigh?' she'll echo "Santa!" If you ask her what she wants Santa to bring her, she'll answer "Christmas!" She makes connections, and she knows all the words ('present' is a favorite of hers and she loves opening packages and boxes and thinks that all of their contents are hers), but she has no sense of how these things work together and cannot grasp the abstract concept of the Santa Claus story. I suppose that this means that she will avoid the trauma of finding out that none of this is real and that mommy and mama ate all the cookies, but the problem is that we so want her to believe. This is a rite of childhood, of innocence.
I talked with her preschool teacher about this last week. Kristen brought it up with me, and not the other way around. She had the kids make some reindeer food for Rudolph & co. and Hallie had a great time playing in the oatmeal. But she had no idea what she was doing. And both of us sensed that this is a global problem, not a localized, reindeer-related one. She happily and cheerfully follows directions and transitions beautifully from one activity to the next; she loves doing what the other kids are doing during group activities and is an avid listener to stories during circle time. But she has no idea why she is doing what she is doing; she merely goes with the flow because this is what is expected of her and Hallie, if nothing else, is an aspirant teachers' pet who would like to make a good impression (except for when she wants to test her limits with us, her moms, or with Miss Flaura, her guardian angel/PCA at school). But we would like her to understand what she is doing, and not just do it.
Not understanding stuff often leads to sensory overload for Hallie once an activity is no longer quite so structured. For example, she loves music time at school beyond imaginable belief and knows all the words to songs and will sing them when she is comfortable. But she has no idea that they are planning to have the kids perform Christmas songs at the church where preschool is located in front of an audience of all the kids' families and that there is a Christmas pageant followed by a dinner. I am sure that this has been explained to all the kids, but Hallie cannot process this information. So, on Tuesday night, when this event happens, she will once more come un-moored and look for some corner in which to hide.
How do we deal with this as parents? The only thing that I think can work is constructing a very concrete social story for Hallie and using her peers (props, I suppose) to act this stuff out. I have been telling her about the performance, but I know she isn't understanding me. On Monday, should school not be canceled due to snow, I will walk her to the church where the performance will be, and will show her the dais, and have her go up on it, and will sing a couple of the songs with her there (we have a list of songs provided to us parents in the preschool family newsletter and they're pretty standard fare). I will talk to her teachers and Miss Flaura about the need to explain this social story to her, too. Maybe, if things are concrete enough (she will have been in the church, on the stage, singing) she will feel less lost this time around and won't be quite as overwhelmed as she was at the Summer Camp musical and the Hallowe'en costume parade).
Enacting the Santa ritual will be harder. It would be most helpful to be at our own home and show it to her, preferably in the company of a couple of other children who already know what they are doing, so that she has a body memory of this event. That's what really helped with Halloween. While the teachers had been talking about Halloween and had the kids make various holiday-themed crafts (they picked and decorated their own pumpkins and fashioned jack-o-lanterns out of paper bags and orange paint and spiders out of egg cartons and pipe cleaners) and had the kids parade around in costume, the significance of all of this eluded Hallie who just thought of these as regular old craft making/art and pretend play. What really worked for her was having Eliza Grace here and experiencing the magic of getting into costume and trick-or-treating alongside the other kids on our block, who were similarly decked out. That made things real for Hallie and lent them significance, and she continued to talk (in her own word-economizing fashion) about trick-or-treating with Eliza Grace for weeks after the event.
We'd love to replicate this sort of body memory production where Christmas is concerned but we don't have other kids with whom we can do this. It is kind of socially unacceptable to lure a couple of Santa-believing children to our home with promises of presents provided to them on Christmas morning just so we can make this part of things come alive for Hallie. Lea is obviously far too young to understand anything right now, though I suspect that, later on in life, Lea will probably do a lot of translating of ritual and abstraction for her big sister. And Christmas is one of those holidays where it is difficult to get people to alter their particular family practices, particularly when no one quite understands that your child, who is on the autism spectrum, isn't going to just figure this stuff out for herself because, after all, the other 99% of all children have done so with no special parental effort.
It's sometimes hard to be a parent of a kid who doesn't quite fit in to the typical world. It makes you empathize with your kid on the spectrum: it's a weird world out there with a ton of social codes and rituals that seem odd and that moves at a very fast pace. Figuring out how to slow this down and make sense of it for your child so that they can mind meaning in this bizarre universe is our job as Hallie's parents. We'll figure something out; Sharon and I always do. But there's no question that it could be, and should be, easier.