It's called The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). It's a little long, but if we're going to understand each other, I need you to take a minute. Autistic self-advocate Karla Fisher uses this model, but instead of spoons talks about tokens. When I say "Brandon was out of tokens", this is what I'm talking about.
You're done? Great.
On any given day, I have no way of knowing how many tokens Brandon is working with. There are signs I can look for. If he's tired, hungry, or sick, there are less tokens available. If I've gotten a phone call from school that he's had a bad day, I know he's coming home with few tokens left. If he's spent a lot of time and effort attending, the token stash is being depleted. Bonus depletion of tokens if he's spent a lot of time attending to a non-preferred activity. Some days he wakes up with lots of tokens, and handles everything the world throws at him. Some days the tokens are seriously low before he even leaves the house. I'm not at a point yet where I'm any good at helping him manage his tokens, but I can recognize when he's low on them. Rest and self-directed down time help him replenish them.
Saturday we took the kids to the Intrepid. The Intrepid has a terrific program called Access, with certain groups specific to those with developmental disabilities and their families. They give a short tour of a select group of artifacts around a theme, and end with a craft activity. This month's theme was superheroes. We've been to the Intrepid several times before, but Brandon usually gravitates toward the one or two things he likes, and then asks to leave. I thought this might be a chance to broaden his world just a little bit; a chance to make history relevant for him. I also thought it might be a good way to engage Cady, who gave me *that* look when I told her we were going back to the Intrepid again. Sometimes, she's got a few too many of my genes.
If you're new to this blog, Brandon has a thing with gift shops. As in, if he knows the place has one, he MUST GO. And BUY SOMETHING. Any trip where we don't plan on visiting the gift shop must be approached with caution. Xanax probably wouldn't hurt either, but I don't have a current prescription.
Danny intuitively understood that we were asking a lot of Brandon - to go to the Intrepid, but not be self-directed. He'd have to stay with a group, and attend to the tour as best as he was able. Knowing that Brandon was going to want the gift shop anyway, he promised him a trip if he tried his best to stay with the group. Which he did, beautifully, no doubt helped by the toy models that were being used as visual aids. Which also made him look forward to the gift shop even more. Which made it suck really, really badly during the crafts activity when we discovered the gift shop was closed.
You'd think we might have checked that, seeing as how NYC was hit by Hurricane Sandy, and the Intrepid is on the water and all. But no.
You already know there's an epic meltdown on the way here, right?
Brandon lost it. As in screaming, tears, throwing himself around, the whole nine yards. It's a rare moment when I'm better equipped to handle a public meltdown than Danny is. But for once, I got it. He'd used up all those tokens doing what we'd asked. Lots of tokens used on the activity meant not enough tokens to cope with the unexpected.
Where am I going with this? Read the spoon theory again. Add it to your favorites. Remember it each and every time you need to advocate for your loved one - not just in the classroom, but in every day life. Remember it the next time you can't figure out why your loved one could do something yesterday, but can't seem to do it today. Remember that they can be replenished, but on a day to day basis they're not an infinite resource. Treasure them - they're the most precious currency in your world now.
No comments:
Post a Comment