We get a report every week from Tim’s caseworker at ODTC that tells us how his week went. For the past several weeks, Tim has been agitated by the voices (worse than usual), restless, has run off his floor /away from staff / out of class several times, and required physical restraint to keep him from hurting himself or others at least once a week. This is par for the course this time of year. Tim’s cycle has always been for him to head towards full-blown psychosis by late February or early March, and it seems this year will be no different.
A lot of Tim’s anxiety centers on personal space. Or his perceived lack of personal space in many situations. Tim absolutely cannot stand having anyone else touch him or get close to him unless he has given explicit permission for that touch or closeness to occur. This makes things that seem normal for us absolutely intolerable for him – like walking on a crowded sidewalk, or waiting in line at the grocery store. We took the family to Walt Disney World in January of 2008, and, thank goodness, Disney has a program where families of children like Tim can get a special pass that lets us go, for lack of a better term, in through the out door on most rides and shows (we called it the “magical fast pass” – read about it here). This meant Tim could enjoy WDW on his terms, without having to deal with the anxiety of standing in a line surrounded by strangers bumping into him. We would absolutely be unable to take our family on a trip like that without that sort of assist.
There are some activities I enjoy that Tim either has already had a bad reaction to, or I know, will never be able to enjoy. Tim must have commercial grade earplugs for any type of fireworks display, and even then, we have to be ready for the need for a hasty exit. Town festivals and parades are iffy events at best. Both Tim’s little sister and big brother have been to and enjoy rock concerts. I wouldn’t even begin to consider that with Tim, even though the idea of the concert intrigues him. Even certain sports are out of the question. Can you imagine confining Tim on a ski lift? If it stopped, he’d jump off, I’d fear. And the fact that it doesn’t stop at the top would elicit panic of an entirely new type.
This lack of ability to deal with anyone in his personal space or touching him without explicit permission is, as I look back on it, something Tim has had his entire life. As a baby, Tim LOVED his “saucer” – the sort of second generation walker where he could stand up in it all day, but it didn’t go anywhere. This thing. He wanted to be in it all the time, observing everyone, without having to interact with anyone. As he got older and more mobile, he came to us for affection when he wanted it. He didn’t like to be picked up when he could walk, unless he needed cuddle time. I called him my “cuddle bum” at that age, because he’d just come up and crawl into my lap when he wanted, tucking himself tight under my arm, balled up against my hip. But if I wanted affection from him, he’d toddle away. Always on his terms, when he needed it.
Now, the other half of this coin is Tim’s complete inability to respect anyone else’s personal space. Irony of ironies. Tim will practically run towards someone if he wants to interact with them, coming within millimeters of their face, touching and petting them repeatedly. He will snatch items he wants from anyone’s hand, child or adult, authority figure or not. He stands unnervingly close to you when he is excited by something you do or something he anticipates you may do. If you ask him politely not to stand so close or not to touch, he gets upset. If you ask for the item back that he has snatched from you, he might sheepishly turn it over, or he might start running. If you touch his arm in response to his petting yours, he will most likely shirk your hand away and sternly ask you to respect his personal space. It would be comical if it wasn’t so obvious that he is completely unaware of his compulsive need to touch you.
Tim works a lot in therapy and school on personal space, both him needing to respect the space of others, and not being so touchy with his own. It is one of his most overwhelming challenges in dealing with this disability. But if Tim is ever going to be able to interact with the public – in the grocery store, on the bus, maybe at a job or group home – Tim is going to have to learn how to soothe the obsessive need to touch others, and calm the paranoia in his head about others being near him. This is our highest hurdle, behaviorally.