Saturday, December 29, 2012

"Well I try, and I try, and I try, and I try..."

*yawn* I am so, so tired.

Not to sound like a Grinch, but I am so ready for the holiday season to be over and for things to get back to normal. It can be a lot of chaos that leaves me so, so tired. I know. I sound like a cranky old bee-otch.

Not that the season has been bad. On the contrary, it's been an amazing holiday for us! Tonight, we were hosted by the sister and husband of our sister-in-law (it sounds more confusing than it is!). For the past few years they have hosted a "Night Between Christmas and New Years" fete. Christine and Rich are amazing hosts, and the food is always delicious and plentiful. They were especially patient with PJ, who insisted on derailing one of Rich's beloved Lionel trains so he could play with it, and somehow convinced them to unlock the lid on a very large organ so PJ could gleefully press buttons and flip switches. It was a great night filled with family, fun, and those Christmas cracker things that pop open and have toys inside! Crankiness aside, I always feel very blessed to be enveloped in that kind of togetherness.

I am cranky, though. I mentioned on Facebook the other day that being cranky, when I know damn well how truly blessed I am, just makes me feel like a shit head on top of being cranky. We have seen so many horrible things unfold in our world lately. Amazing, terrifying, earth-shattering things that I can't even imagine. It makes it hard to indulge in the age-old luxury of being in a bitchy mood because, really, what do I have to be bitchy about?

Still, I can't lie. It's been kind of a rough month. The transition to school hasn't been as smooth as I had hoped. I expected it to be a big change and for PJ to react to those changes, but I had no idea how flat out crazy he would be when he gets home from school. I see him almost manic in his need to expel his energy and meet his sensory needs. One day, PJ dumped out all of his wooden train tracks and trains and was rolling around in the pieces, almost swimming in them. He looked like he had no control over his body and I didn't have any idea of how to help him. We are supposed to be doing 2-3 hours of ABA-like drills with PJ daily, as prescribed by his behavioral therapist, but I have difficulty just getting him to sit at his little chair for more then three seconds. He's unfocused and disorganized and the drills end up being little more then matches of wills as I try to keep him on task and he loses his marbles. Then his therapist lets me know that the longer we go without getting the drills in, the more time is going to waste, and I just feel lost. I know that some of his actions are behavioral, but there's some other need that I am just not meeting, and I'm not sure where to start to fix it. Right now, my next step is to call his CHOP occupational therapist and create a sensory diet for PJ in the hope that I can help him calm his little body so he can reach the potential I know he has. When I think of it in terms of therapy, I can be rational in understanding what is happening. But sometimes, I just become a mama who wants so badly to help her autistic son and just sucks shit at it. I get impatient with myself, impatient with PJ, impatient with the flash cards and lists and drills. I spend time with others and I'm sure they see me as a complete parental failure. I'm not a therapist, no matter how much I teach myself about autism. I'm just a mama who feels like she has no idea what she's doing.

We have had tough patches before, though, and we have made it out better then I thought possible, so I am trying to hang on and get through this one. I know enough to ask for help when I need it, and now that the holidays are almost done, PJ will be able to focus on school and acclimatize without any disruption. I try to take deep breaths, drink my coffee, stay above water and remember that I am a fucking warrior.

Clearly, I am going to need a special bra for this kind of action. Battle, ho.

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