A Needle in Every Haystack

I thought having a name for Jack's problems would be really helpful, but I've found since we got our diagnosis that the name for it isn't really important, but instead finding ways to cope with the behaviors that come from it is what we're really looking for. And we've decided to try everything! People have been so helpful to give ideas and tell me things that have worked for their children, but we have to find out what works for Jack.

We're going to start with ABA therapy at a place called Brilliant Minds in Destin, Florida. We took Jack for an assessment there last week and he LOVED it - he keeps asking to go back. That's a good thing since we're going to be going back twice a week for a while. I like the idea of behavior based therapy. They don't care what the diagnosis is. Instead they ask, "What is the behavior we want to change?"

The answer to that is easy right now. A couple of Jack's problems have gotten much worse recently: He cannot eat around babies (diapers is more the issue). By that I mean, he can't eat in a resturant if a baby is within hearing distance, he can't eat if a baby is on tv, he can't eat if a baby doll is in the same house as him. When I say can't, I mean he physically vomits if he tries to eat in these conditions. You can imagine how much fun dining out is right now, especially since we can't really control if a baby comes in AFTER we've begun eating. Then it is a race to the door OUT of the resturant before we ruin everyone's meal:)

He also becomes fearful of the strangest things. He walked in his room a few days ago and just lost it - ran from the room, wouldn't go back in there, but also couldn't tell me why. This is HIS room - the room he has lived in for a year now with no problems, the room he loves and plays in by himself all the time. It took me two days to figure it out. Two days of holding him in his room while he shakes and hides his eyes and ears before I could pinpoint the exact thing that was causing the fear and it was this.

A small, blue, glass elephant figurine that was mine when I was a baby and has been in Jack's room since before he was born and has never bothered him before. That's it: it was nothing scary or odd or new or different, but that day, something about it terrified him. He was able to play with it after we talked about it. He talks about it a lot still, and he can look at it and play with it now that we've discussed what it is and that it's nice and not scary.

My biggest question isn't "Why did THIS scare him?" even though it's not scary and shouldn't scare him. My biggest questions are: "Why did that bother him TODAY when it has never bothered him before?" and "Why couldn't he point to it or tell me what scared him?" Those are the frustrating parts of this - things that seem so simple to fix apparantly are not evident to Jack in the way they would be to others. It would have taken no effort for any other child to just point to it when I asked 1000 times, "What scares you?" but he COULD NOT do it - he just couldn't show me what it was.

So, every room, resturant, house, and store we go to has become our haystack and we are all scanning the walls and shelves for that needle that's going to set him off. It's never what I think it will be. It's an elephant he's had forever, or a Miss Piggy doll wearing a diaper, or "The Jungle Book" on tv, or a picture of people walking down the street.... It's never the horror movie on tv when we're fliping the channels, or the pictures of aliens in the movie store, or the dark, or monsters on Ben's video games - the things that would make sense to me... And sometimes it's nothing - he does just fine. But every situation is a possible meltdown, or fear, or sickness and we are always on the alert, even in our house. Honestly, it can be exhausting, but we're working on it. We're doing something, we're trying something, we're being proactive. It may not work. It may not be what he needs. But it's something and for now, that feels good. It feels hopeful and today, that's enough.