Tuesday, November 1, 2005

http://www.latimes.com/news/local/la-me-shooting1nov01,0,5728150.story?coll=la-home-headlines

What I worry most is that this will spawn a backlash against people with Asperger's or spawn mass ignorance. It sounded like this kid had some emotional problems that was, if not created by his condition, it was definitely aggravated by it as people with Asperger's will want to interact socially but their skills are so off that they can't seem to have solid relationships the way they see everyone else relating.

It reminds me of that story about King Midas, how everything he touched turned to gold. Imagine when he starts turning the people around him to gold, then he realizes that no matter how much he tries to reach out, it only makes him more and more isolated and lonely.

My brother has Asperger's and anyone who has met him knows how desperately social he is. He'll talk to anyone anywhere. I think when he was growing up, his condition was looked upon with such shame and fear of judgment by my parents that they were always desperately trying to change him or keep him out of situations where he would be judged or compared to other "normal" kids. I was always told that if anyone asked, to just say he's hyper and act like there was nothing wrong. But I think it wore on him because he could feel that nothing he did was right or good enough, and he didn't have any friends outside of really young kids who didn't know that he was "different." His desperation for friends grew to the point that he started telling anyone (random strangers included) "I love you" because he wanted that closeness.

We used to follow him around the gym because he would go and hug all the trainers and employees. It was awful on so many levels, to see how desperate he was to be loved and to see how uncomfortable the people could be or sometimes, downright mean. The only times I fly off the handle and get really crazy mad is when I see people making fun of him behind his back. On the other hand, there are those really kind people who are always nice and patient with him, and it brings you to near tears when you see how kind they are to him. It's a humbling experience, when with each interaction, you pray that people will be kind, and I hate that it's like that. I hate how mad he gets when people like his cousins say they'll come over and play with them, then stand him up because they have better things to do. I hate that I know he's so lonely, but he doesn't have many friends.

He was just here this weekend and I can see a world of difference in him. Over the years, his social skills have improved and his emotional scars have gotten better as we build his self-esteem. I am especially thankful to my friends who treat him very well and interact with him on a peer level. This has done wonders for him because he feels like an adult here, and that he can be valued based on his level of interaction rather than being automatically dismissed and looked down upon. His negotiation skills have improved exponentially as we've taught him how to communicate the things he wants and negotiate, giving him an environment where he is validated and his ideas and feelings are respected. I truly believe that he could achieve a level of independent one day as he's much higher functioning than most of the other kids at his school, but the next hurdles are to give him solid vocational skills and find him employment so he feels that he has a purpose, and help him build friendships outside of me and my friends.

Eventually I would like him to live close to me. He graduates next February and we have to figure out his next step. It upsets me a lot that I'm not in a financial place where I can get him a place and a full-time caretaker to assist him during this transition. I'm really hoping that with all the things I have going, that I can get to the place where I can afford to take care of him. I think he would mature more quickly if he could be in a consistent environment where he felt he was perceived as an independent adult the way he wants to be seen. I think it's hard for him to go from staying with me, where we tell him he's responsible for himself for better or for worse, to going home where he feels like he's a child. Even if my parents aren't treating him that way, I think it's the natural developmental conflict where the child has to truly feel that they are autonomous before returning to the parent-child relationship feeling that they are truly peers.

The first thing though, is to deal with his medication. He's been on all kinds of crazy medication since he was young that made him gain weight and have raised his blood pressure to levels of middle-aged stock brokers'. Now he's got problems with his kidneys and they put him on more medication for that. It seems like they keep adding medication to treat the side effects of the first medications, and from my own experience with meds, once your body gets dependent on them and you miss taking them, you get pretty crazy and it turns into a really bad force in your life that you have to contend with.

I really worry about all this stuff so much. It scares me more than anything the thought of living without my brother.