Not On The Same Page

Emily just posted a blog about the things which are stressing her (and us). There was one thing which she missed, which is that we're struggling to get everyone in this family on the "same page" and staying there...

When you're living in a household with 2 small kids and 1 adult dependent, it's important that everyone is striving toward the same thing. If people are pulling in opposite or contradictory directions then you'll never succeed. Particularly in regards to Timothy, we've been struggling to make a coordinated change and improvement in his life. Some examples:

1. We want others to be more involved in Tim's life and support. When Emily is struggling and someone offers to help Tim with his shoes, Grandma replies "Oh no, Emily should do that". Opportunity lost.
2. We want Timothy to have more control over his life, and despite repeated efforts we can't seem to stop family members shoving drinks and food into his hands and saying "eat" or "drink".
3. We want Timothy to be treated with respect and addressed as you would an adult or a child. However, there is still a pattern of one or two word instructions: "Tim! Come! Come here! Tim! Come! Sit!". It's somewhere about the level that you'd talk to a dog.
4. We want Timothy to verbalise his desires, which means that we need to ask him questions and not do anything until he replies. This worked well when he visited in Vancouver but we just can't seem to maintain it here in Edmonton.
5. We want to introduce Timothy to more people, but without solid supports in place we just can't manage it.
6. We want Timothy to be more capable on his own, and more helpful to people around him. There's simple stuff like opening and closing doors on his own (or *gasp* holding it for someone else). Similarly, we want Tim to be able to put on his jacket or even his own shoes. But when there's a time pressure of any sort, we forget to do this.

It feels that we're striving to improve Timothy's life and abilities, but without the necessary supports around us we just can't maintain any consistency and so can't make any progress. Every attempt to improve his life by training him in new skills (yes, verbalising your desires is a skill) is undermined by the fact that we can't maintain that consistency. When we need to run out of the house we don't always have time for Tim to put on his own jacket. When we can't get a word out of Timothy it is very tempting to just make a guess at his desires. When we can't get Tim to follow directions it is oh so tempting to use one-word commands. The lack of consistency is incredibly frustrating, because you know that any 'good' work that you do with Tim is being erased by the 'bad' habits that follows later.

But if we force ourselves to work hard and consistently on improving Timothy's situation, we run the risk of making Tim upset/angry. Here's an example:

If Tim is bored and grumpy in the evening, I know with 90% certainty that he would enjoy watching reruns of the Lawrence Welk Show. He might enjoy other things too, but the Lawrence Welk Show is almost guaranteed to entertain. 

I could just turn it on for him, but that wouldn't encourage him to speak or to exercise control over his environment. To do it correctly I should grab his Android tablet (where is it by the way? upstairs? downstairs? in a cubby hole?), open a page of movies/TV shows, and ask him "Do you want to watch anything?".

If he says "Yes" then I hand him the tablet and let him choose. If he says "No" or makes no effort to choose then I open the image of the Lawrence Welk Show and ask "Would you like to watch the Lawrence Welk Show?". Note the use of complete sentences...

If he says "No" to the show then I have to try something else, even if I'm certain that he'd enjoy it. If he says "Yes" to the show then he might want to watch it. I still have to ask him other questions until I get a "No" from him, just to verify that he understands the choice. He's been conditioned to say "Yes" a lot, and so a simple "Yes" doesn't really represent a choice... 

During all the above Tim could just get more frustrated. People have been 'reading his mind' for years with moderate success, and it's harder on him in the short-term to verbalise or communicate his desires.

Tim can't understand that, in the long-run, the ability to use the Android tablet to choose exactly which TV show or movie he wants to watch will improve his overall happiness. In the long-run, we don't want Tim to be supervised all the time - we hope that he'll eventually come to us of his own initiative whenever he needs help. Sometimes we forget this long-term goal when dealing with the immediate situation.

Getting back to why I started this blog entry... We're struggling to stay on the "same page" because it's hard. It's hard to break old habits, it's hard to get everyone to pull in the same direction, and it's hard to stay consistent when reality is this complicated. The lack of supports makes it harder because we can't spend as much time with Tim as he needs to attain the skills he should have. Right now I'm just crossing my fingers that we can get some good staff, and then maintain the necessary consistency within ourselves.