Tuesday, July 5, 2011

Life in the bubble

We do not do "normal" things very often. We don't go to festivals or parades or parties with lots of people. We have created a bubble of comfort from which we rarely emerge. To others, it may seem as though we are sheltering Perrin or isolating ourselves from the rest of the world. In many ways, this is probably true. We are sheltering him, and ourselves, from the chaos that frequently makes both John and Perrin completely shut down. I have to take a threat level assessment before we go anywhere to determine if any of us will be able to make it through an activity. We can't go for a family bike ride around the block because Perrin is convinced that he will crash into a bush and is therefore terrified. Because of this, he is missing out on a childhood rite of passage that I'm beginning to think may not be worth the drama. We were invited to a neighborhood BBQ thing yesterday for the 4th.  We had to leave after 2 hours because Perrin had become so convinced that the other kids were trying to kill him that he started to hit anyone who came near him.  He has become afraid of everything. We haven't watched a new movie in over a year because the last Shrek movie scared the shit out of him, and now he thinks every movie will have a bad guy in it. So we don't go to theaters anymore, which is something that he used to love. The fear makes our bubble smaller and smaller. Trying to bust out of that bubble usually ends in tears, and so I have to ask myself every day, "Is it worth it?" Is being a part of the world worth the suffering it causes? Am I making my son stronger by pushing him to do these "normal" things so that he can adapt or am I causing unnecessary trauma? Is the world worth popping the bubble?


  1. I'm sorry things are so tough for you guys.
    One day, hopefully, you guys can do some "normal" things with Perrin. Until then, doing what you guys are doing now is what is best.

  2. just started reading your blog, looking forward to catching up with it!
    I think it's important to be able to cope with the world at least a bit, because he's going to have to face it sooner or later anyway, and if you expose him to some things he finds scary now, there's more time for those fears to lessen.