Another post from the old blog

March 16, 2005

In Jimmy's backpack, there is a notebook that travels with him to and from school. It's a way for the teachers and I to keep in touch. Granted, the teachers use it more than I do, because I am a yakker and I just keep those poor folks on speed dial with all my angst and worry... On Monday, the teacher started a note that took up half a page. You could tell where she had stopped writing the first time. Then she went back and added something else that he has just done. Then she did it again. It just kept getting longer. Milestones from the note:

1. He acknowledge the presence of another child by calling him by name - Riley. Note: Riley is now at the top of the list for invites to Jimmy's next birthday party. Before this, he occasionally referred to me as "Mama" and call Buster, aka Miss Kitty, "Cat." To be honest, he is better about addressing the cat than me.

2. He picked up about three new words which escape me at the moment. It's somewhat refreshing to say that I'm almost blase about this because of all the new words his picks up.

3. He has mastered drinking from straw. At 3 and a half. I know to most parents that is no big deal, but it opens up a whole new world of juice boxes for us. Once you can master the straw, you don't have to remember the sippy cup.

It's thrilling, but yet I still have these moments where I am really sad. He functions so well on so many levels, but he doesn't have the social skills to make friends or the language to convey what he thinks, how he feels. I want everything to come now and it all happens so slowly. That straw thing represents almost four months of daily effort on the part of his pre-school teachers. She has been working on it since its inclusion on the IEP. Yesterday morning, I answered the phone. A woman was on the other line. "Hi, I'm Jimmy's new therapist. I am not feeling well and can't make it today." You know, since we began therapy on February 22nd, we should have had eight sessions and we have only had three!!! The therapist was overbooked or sick or it snowed. One wound up being an evaluation session rather than therapy, which was an hour of answer questions about Jimmy can and cannot do. It's always a personal hell for me, because I am just so damn apologetic about it. It seriously makes me feel so small, less like he is on the autism spectrum and more like he is on the spectrum because I have failed him in someway. Intellectually, I know that is not the case, but emotionally it kills me every time... But I digress. It's just, I am constantly dealing with the business end of this - managing doctor's appointments, therapy appointments, teachers, daycare. I deal, I deal, I deal and somehow any joy that I should be feeling gets sucked out of the equation. I am just left with the stress and frustration.

I know how fortunate I am to have a high functioning child. I know people who deal with a much more difficult end of the spectrum. Other parents deal with children suffering life threatening illnesses - the doctor who delivered my second child, for example, has a son with cancer. That she helped me through the end of a difficult pregnancy and put my baby in my arms for the very first time, that she does this for so many women, and then has to deal with something so awful in her life pains me - it's then I truly feel like an asshole for complaining one moment about my situation. At the same time, I am stressed, frustrated, and hurting too. I have one baby I bust my ass for to get and give him the help he needs, desperately trying to be a good mother too. I have another who I wonder if he is getting enough and being completely overlooked in all of this. I have a husband that isn't as helpful as I would like him to be, but I don't even know what to ask him to do or how he could help. Maybe I am not coping as well as I should, but why does it have to be this way?

There is so much in my life, so much in the world, that is so hard, I really wonder if God exists. How could he possibly make life this hard on people? It feels pointless to pray or even hope sometimes, because it just feels so random. Like there is no plan to any of it. You are lucky or you aren't. Your kids are perfect or they are flawed. Either way, you have to deal with it. God? Sorry, you get no help from him.