Thursday, February 20, 2014
Been struggling this week with labels and decided to create a little chart. Feel free to share with the quirky princess in your life (or the family lucky enough to have her). Perhaps this exercise will help organize my thoughts into a blog entry by this weekend.
Monday, February 3, 2014
I haven't been blogging as much the past few months. I think its in part because I have been very busy with Sofie but also because I don't NEED to blog these days. I don't have the same level of fear I did a few months ago about the road ahead with Sofie. These days I think I am more in Protector Mode. I am becoming less and less worried about what people think of Sofie and more concerned about protecting how unique she is. I don't want her to apologize to anyone for who she is. We are embarking on a bureaucratic journey to get Sofie ready for Kindergarten. I am discovering a lot of traditional school is fitting a mold, an idea of how a child "should be." Today we went to our first county transition meeting with Sofie. The meeting went fine. The evaluators were very open to hearing about Sofie from us and observing her play. At one point, the teacher evaluating said with a happy reflective tone "She [Sofie] seems really content." And she is. So as a parent, you have this moment of "So what am I worried about?" We have a little girl that has Autism and by some miracle doesn't have many of the side effects that can haunt a person. I never want her Autism cured. I think we should start saying "find a cure for Autism's side effects." The beautiful perspective she has on the world is not an illness. She is not damaged. I am really beginning to feel I am working towards an Understanding that I wouldn't have without being Sofie's Mom. It would wound me to read articles suggesting things the Mother was exposed to that brought on her child's Autism. Forget vaccinations. I think that theory has ABSOLUTELY no merit. Won't waste the characters in this post. But I have often tried to think of what I did. And to be honest, I have yet to read an article that had me think "OHHH. That's it. I do remember when I had that flu, or took that medicine, etc." So I go back to why I haven't been blogging as much. I am done "mourning" ( I hate that phrase). Now I have a new drive to write not because I am sad but because I truly feel I have something to say-unapologetically. In crude, somewhat comedic, terms...screw anyone that is going to see Sofie's Autism as tragic. My advice to the world: the next time someone tells you his or her child has Autism, don't say "I'm sorry to hear that" or some diatribe about God giving you what you can handle. Simply ask "How is he or she doing?" That's it. Saying anything else is oversimplifying something incredibly complex into some sad greeting card. Don't mourn for these kids. They are still here. Ask if they are okay. Ask if they are happy. And if the parent seems to be struggling ask if they are okay. Alright enough ranting. The past few weeks I have been having flashes of this HBO Movie "Grey Gardens." It was a dramatization of a documentary about Jackie Kennedy's cousin, Edi, and her mother and their infamous hoarding. The movie delved into the relationship between the mother and daughter and what brought them to live in squalor and isolation. Now you may say, but Kristin, the title of this post is "in search of Grey Gardens." why search for something so sad? Well of course I don't fantasize about living in a legendary cat-filled hoard (besides I am allergic). But I find myself sympathizing with the Mother in the film. Her daughter Edi is eccentric and would rather twirl and dance than marry. The Mother is a bit of an oddball herself and revels in having a partner to twirl with and forget about the outside world. Edi matures and wants to twirl and dance outside the walls of their estate, Grey Gardens. The Mother doesn't want to lose her twirling partner and is scared that the big scary world won't understand her daughter and she will get hurt. Now with any great HBO production there is a lot of dysfunction, crying, drama, and unhealthy dynamics of relationships. The Mother makes a lot of mistakes and many of them are fueled by pride and privileged delusions. She is not a perfect model for parenting. But I am stuck on this image from the film: Edi and her mother dancing and laughing while performing at an impromptu lavish party. They live in their own little world. They are "performing" for the party but you know from the development of the characters that they don't need the party- they need to twirl. I can see the temptation to protect your Twirler from a world that wants her to be something "normal." I'm not going to hide Sofie away from the world. But I am going to work very hard through Sofie's schooling to protect her. Being a girl is hard enough. Add on top of that being the kind of unique most people can't wrap their heads around and you have a real challenge. But it is a challenge I will be sure we meet with dancing feet.