Standing in the Doorway

Like most new parents we received several cards and gifts after Kellen's birth. There was one in particular that I still remember even though it was seventeen years ago. It had a drawing of a little blond toddler standing in a doorway looking out. Oh, how I hated that card and the effect it had on me. Dealing with a surprise diagnosis of Down syndrome, pretty much everything made me cry that first year...and that card really got to me. In my mind, that little blond boy represented Kellen and how he would be an outcast on the fringes of life....always looking on, but never included. Always standing in the doorway, but not out in the world being a part of life. How could a little picture like that bring up so much emotion? I don't know, but it did. For me. In 1991.

Little did I know, back then, that what keeps Kellen in the doorway in October of 2008...are his own fears. Many days he wants to go out and participate in life, but he is unable to overcome his anxiety. So much of his energy is going towards keeping his fears at bay, that he ends up grumpy much of the time and unable to regulate himself. That's when the four-letter words never seem to end and the volume of his voice is stuck at "maximum".

There are days that he is able to gather himself and make it out the door...only to short-circuit later and shut-down. When he shuts-down he gets completely stuck. So stuck, that he is unable to tell you what he needs or move himself out of a stressful situation.

Last weekend there were a couple of situations where Kellen got stuck in public and I was afraid that something bad might happen. That the wrong person would get too close to him and say or do the wrong thing and Kellen (who was already agitated)...might accidentally hurt them. I've found myself in positions where lately I've had to tell total strangers that he is agitated and there isn't anything I can do to get him to______(fill in the blank: move out of their way, let them use the soda machine, let them in the restroom). It's downright humiliating for me and hard to think about the message that it sends to the public (people with disabilities are unpredictable and therefore dangerous.) All of this is enough to make me want to keep Kellen home and not venture outside even when he wants to.

Now we find ourselves standing in the doorway again. Standing here trying to decide if...at this point...admitting him to the hospital for a few weeks could be the right thing. Something that might actually help him have a better quality of life in the long-run. Maybe we can give the doctors the opportunity to find out of there is a medication that can help him. We are waiting for an opening at our local children's hospital and then I'll have to do one of the hardest things I've ever had to do. Let go...and hope for the best.