Stew finished branding the short-age calves early today and picked Lu up from school. When he got home he called out to me and seemed so sad as I came down the stairs from my office. He told me that he got to the classroom a little early and that the kids were still in circle time. All of the kids except for Lu. (She was at the back of the classroom with her aide.) And they were talking about Disneyland. He teared up a little. I asked him what was wrong and he told me that he hadn't realized until today Lu was the only kid in the class who couldn't talk.
I had to stop and think for a minute. I tend to not think of Lu as being completely non-verbal because she has a certain set of words that she can and does say, but the idea of an in-depth conversation about the coolest aspects of Disneyland is definitely way beyond her capabilities. She doesn't even know what Disneyland is. Requesting toys, movies, bath and bed are the basic functional extent of her vocab. But I knew what Stew meant. I've had those moments myself. Lots of them over the past couple of years. Sometimes we both get so caught up in her world, in how hard she works and how much she does and how far she has come that it's a shock to see what just naturally happens with so many other children her age. I didn't want to say there-there and pat him on the shoulder, or remind him of how far she has come or any of the other things that popped into my mind at first. Instead I decided just to talk about Disneyland.
When I was a kid I loved Disneyland. No, wait, I LOVED Disneyland. Especially Mr. Toad's Wild Ride. The first time I went on that I really thought that I was driving the car and crashing into everything. It was definitely a magical place for the 5 year old me. But the idea of taking our kids to Disneyland has been beyond impossible. Until now...
Why you might ask? Because of Booth.
Not long ago Lu hid in the house. This is something she does with some regularity. But this time it was different. It was just me home with the girls, Stew had to stay the night out on the ranch. Lu asked for some cookies so we started to bake. She got bored, wandered off, and as I put the cookie tray into the oven I realized it was quiet. FAR TOO QUIET. Myffy was playing nicely with her Toy Story dolls in the livingroom, and I thought that Lu had headed that way, but where was she now? 10 minutes of looking calling, shouting, yelling, screaming, pleading, begging commenced. I couldn't find her. I just couldn't find her. I looked everywhere she normally liked to hide. I checked all of the closets, bathrooms, bedrooms, in cupboards, under sinks, behind toilets, everywhere! I checked and rechecked all of the doors and windows. All locked. She couldn't have gotten out and locked them behind her. She had to still be somewhere in the house. But I was stumped. What if she found a way to get into the heating ducts? Or some crawlspace I didn't know about? We only moved into the house in October. Maybe there was something I didn't know. I started to think about what I would say to the police when I called them and then I heard it, a thump on the bedroom wall. She had to be in the walk-in closet. I'd already looked in there several times, but she was smart and climbed in behind my shoes in the section behind the door swing. The only way I could see her was to close the door and get down onto the floor to look behind the shoes. And there she was, curled up behind my warm wooly slippers.
This happened at home, in a place where she was safe. But what if we had been at Safeway or Target or Disneyland and someone walked between us breaking the grip of our hands? What if she managed to get out of sight for even a second because someone tripped and fell or my attention was momentarily diverted by Myffy falling over or something? What if she hid in a place that was so open and unsafe that I could look for days and never find her? The thought of even trying to navigate an airport with her feeding tube and potty issues (she does great at home, but strange toilets can be scary- I have to always carry her diamond printed princess seat with us for her to ever go in a new toilet) has been beyond us for so long now. But we started talking about it. About bringing the dog. And a respite worker if one of the girls who works with her would want to come. We could stay in the hotel right there at Disneyland so we could leave to go do her feeds and still go back afterwards to see more stuff. And the dog is trained to be tethered to the child. They could be connected to each other so that she could not get away from him and no one could separate them. If we had the respite worker come too, just to help with hand-offs and potty sits and diaper changes for Myffy and getting meals and everything, we could probably make it work. There was suddenly a very small light at the end of a very long tunnel.
I tried to imagine it from Lu's perspective. About half of her world is tied up in her movies. All of her longest verbal phrases at this point are echolalia from the scripts of her favorite movies. What would it be like for her to meet some of her favorite characters in person? To get to touch them, hug them, hang out with them for awhile? I have heard that Disneyland is great about giving autism passes so that she wouldn't have to wait in line. Not that she would be tall enough for any of the rides. But still, just the place would probably be so amazingly magical to her. And if she tried to jump off of the "It's a Small World" boat because the water looks so inviting, I'm sure that between Booth and us and the respite worker, we could stop that catastrophe from happening. We could keep her in the boat and get to the end of the ride. And if she gets too tired or overwhelmed and needs a break, we could go back to the hotel for awhile. Yeah, I really think we might be able to make this work!
As we went over all of this Stew brought up the fact that Adam Ant is playing in Anaheim, CA on our wedding anniversary, Oct 20, 2012. I'm not sure that we will have raised all of the funds for the new dog by then ($15,000 for the dog and $3,000 for the two weeks of bootcamp to train us and all of the Hab and Respite workers to become handlers for him). Or that we or Lu will all be ready by then. But it gives us something to shoot for. Something to look forward to finally. A fun time for the kids and a bit of fun and crazy for Mom and Dad too if we can swing it. It's worth a try at least.
If you are interested in helping us raise the funds we need to get Booth for Lula, please go to:
Any and all help is greatly appreciated. Please repost or send to anyone you think might want to help. And stay tuned for more about Booth! I have so much to say about this amazing and wonderful dog!