The other night I took the kids to see the homeopath in Santa Monica. We had a 5 o'clock appointment and rather than battle the west to east traffic, instead of driving home we went to see Despereaux, the new animated children's' movie. I haven't taken Sophie to the movies in ages -- she's generally really antsy and uncomfortable in them, makes a lot of humming noises (mmmmmmmmmmmmm)and just doesn't appear to enjoy them. But it had been a really long time, and I thought this one wouldn't be the frantic, frenetic spectacle that so many kids' movies are these days. I had read the book to her and to the boys when it first came out and knew that it was a sweet story, and the previews made it look beautiful. This was what I told myself along with the requisite it will be nice to go to the movie with all my kids, not just the boys. Something normal. And it was fun, in the beginning, before Sophie started to get restless and started humming her monotonous mmmmmms and wiggling around and then I just got up with her and walked out to the lobby for a while. The boys were avidly eating popcorn and watching the movie and barely paid attention when I told them that I'd be right outside.
Sophie and I walked up and down the lobby for a few minutes and then she wanted to sit down on the floor, but I didn't let her. I thought that since she seemed tired, we could go back in the theatre. When we walked in and sat back down, she was quiet and I turned to watch the movie. Within seconds, though, Sophie stiffened beside me and began to have a HUGE seizure. The kind where she yells loudly, a guttural groan and stiffens and jerks. My impulse is to hover over her, protect her, almost wrap my body around the space that surrounds her. I think it's an instinct to shield her from enquiring eyes, and when I do it I am aware of those around me but I almost consciously deny them. I will everyone to disappear so that I can exist there for her and so that she can have her seizure and be done with it. I create a bubble of sorts or at least I do in my mind. For a brief second I glanced over my shoulder to my right, at the boys and saw their profiles illuminated in the movie light. They were what I can only call stuffing their mouths with popcorn, raptly looking at the movie screen. They didn't appear to notice, but it was only a second that I even noticed them and that is what I saw.
When the movie was over and we walked out, I asked them whether they knew Sophie had a seizure. One of them said, "yeah, it was a big one." I asked whether they heard her groan and one of them said, "yeah, it was loud." I asked whether anyone else had heard and one of them replied, "yeah, everyone turned around."
I've been thinking about this for three or four days (through Christmas and the aftermath), feeling guilty that I brought her to the movie and that it somehow caused her to have such a big seizure, and feeling sad that we really can't go to the movies right now all together. But mostly what I'm wondering is this: are Henry and Oliver so used to Sophie's seizures that they are able to simultaneously know that one is occurring and that I'm taking care of it and therefore can continue to toss popcorn casually into their mouths and pay attention to the movie AND know that people are staring and looking? In the same way that I create this figurative bubble around myself and Sophie but their own?
Or are they just eating popcorn and watching a movie?
Movie etiquette is a tricky thing...sometimes it seems that typical children can make every burp, snort, yell, etc, and the audience tends to write it off as "kids will be kids," at least at a kids' movie. But let an autistic kid yell out or a kid have a seizure, and it's time to stare or judge. Here in Texas an upscale theater chain, Studio Movie Grill, invites kids with disabilities to a free Saturday morning showing of first run movies, for this reason...that they and their parents and siblings can enjoy the movie without worrying about how the audience might react to non-typical behaviors. Now, back in the day, I would have condemned such a practice as an attempt to segregate disabled kids. But with the advantage of many years of parenting and being a therapist, I think such a practice does have its value, allowing some kids and families to go to a movie in a comfortable setting when otherwise they might not be able to.
ReplyDeleteMy boys, unfortunately, have been missing movies lately. I used to take them and drop them off. They rarely want to see a movie that I would enjoy and it gives them a chance to have a social activity without mom tagging along. But since Gabriel has been laughing maniacally for hours at a time, he obviously would be a huge distraction in a movie. So we've had to put movies on hold and that makes me sad, too.
We saw that same movie the other night - and it was really noisy with kids, babies, and my Dad sitting next to me who laughs Waaaaay to loudly.
ReplyDeleteGalen's comment above is really cool with the theater that offers a special showing for kids with dis-abilities.
Your boys were probably watching a movie, stuffing in the popcorn, and resting secure in Mom's taking care of Sophie ....
Edith (my daughter) is also oblivious to some of Robert's problems. Or she's creating a bubble. Now that he's on biotin, he doesn't have as much of the feeding intolerance from the tube feeding as he used to, but he can still have these very sudden vomiting episodes, where Roger and I go running for the tubing and the vent cup and are trying to make him comfortable and drain his stomach, and Edith often chooses those times to start asking me to do innocuous things for her or keeps asking questions that could be answered later. Go figure.
ReplyDeleteThis reminded me of when I was in high school and was babysitting for a deaf autistic boy. He was from the summer camp I worked at, and I took him to a movie, a Western, and when he saw a campfire on the movie screen he FREAKED OUT - stood up and started frantically signing, fire, fire. I hadn't that about that day for years.
ReplyDeleteThat must be frustrating - that you can't just throw all your kids in a car and go to a movie whenever you feel like it.
I remember reading Despereaux to my younger daughter. The next year I helped my sister at a lit fest and got to spend the day with Kate DiCamillo - schlepping her from the airport, etc. I love her writing. Tiger Rising is my favorite. It made me cry.