Wednesday, October 3, 2007

Not Always Miss Sunshine

I have a child on the autism spectrum. I am always working to get her better services and help. I am always looking for the different treatments people swear by. I am always finding new activities to do with her that are aimed at improving her skills. I work on the skills her therapists assign us to work on at ho me. I look for support groups and play dates. I research the school system here and in all the other places we may end up. I try to be an activist and participate in fund raising walks, I have the autism awareness decal on my car to help spread the word that this is a problem that is growing and we need to educate people, keep searching for a cure and make it a priority. When 1 in 150 kids is diagnosed with autism, I believe its time to put this problem up top on the list with the other big issues.

However, I am not perfect. I don't always know the right thing to do. I lose my patience. I get frustrated and mad. And yes, I have pity parties. And when I am feeling so down, I do not want to hear how highly God thinks of me for giving me this special child. I don't want to hear how much worse others have it. I know that already. I see kids with awful disabilities at her school everyday, and thank God that Bethany can run, and laugh, and play. That doesn't mean that I am able too see things that way 100 % of the time though.

Just as I don't want to hear all of the optimists take on life when I'm down, I also hate hearing things like, "Oh but when kids do start to talk you just wish they would shut up" My child doesn't answer yes or no to questions. she doesn't tell me what she wants or needs or whats wrong when she is crying. she has never said, "I love you." She only recently has started speaking a little, mostly labeling things, and now singing songs, and believe me, the idea of wishing she would shut up has never entered my mind. We have worked hard for the speech she does have.

That said, you may wonder, "Well geez! What the heck is safe to say around this lady?" lol. Anything that doesn't involve invalidating my feelings when I am feeling down, and anything that doesn't try to show me how even typical children drive you nuts. I know all kids can be tiresome. I know even if she was typical, I would have my issues. But be sensitive people! I wouldn't go up to a paraplegic and say, oh you are lucky you get to sit all day. My legs get tired."

Just be our friend. Just don't judge, my child, me or my parenting when she is freaking out and having a meltdown. Don't try to insist that there is nothing wrong with her because she makes eye contact. We worked hard for that too! Don't judge me for making parental decisions that you would never do. Maybe there is a reason. And rest assured, I research everything to death. Don't act so shocked if Bethany seems to ignore you, but don't ignore her. She hears you. She knows you are there. She just doesn't know how to interact with you and socialize.

This is not directed at anyone specifically, and I know people mean well. Well, most of them. Don't take this harshly. This is just the way I feel.