Friday January 12, 2007
Some days I really resent how much harder things are for Zane, and to be a parent of an ASD child. Since he doesn’t really learn by inference, every detail of everything he needs to know must be taught, and it must be repeated a doggedly insane number of times. It puts such intense pressure on us as parents to always be doing, doing, doing. Like we have already lost too much time and any amount of rest is simply being lazy.
I resent almost never being able to take a break. A true break. Nobody wants to change a preschooler’s diaper, heck *I* hate changing his diaper. He is actually pretty easy to watch if you can hack diaper duty because you can set him up with a video game and he will play it until he either passes out, or you make him turn it off. So, if you are just needing a break, this is an easy way to do it.
However, as impossible as it is to find caregivers for him, now his sister is causing her own brand of havoc. She is on the opposite end of the scale…so demanding and intensly needy that she is difficult to care for. I have had experienced daycare givers tell me that they are glad she isn’t a regular at their daycare because she is so intense.
So on one hand you have a kid that prefers not to interact and a kid who demands interaction every.single.moment.
It is too much to realize we are leaving the confines of the familiar. He often cries when he realises he has to leave the house.
It is too much to go to anyplace outside the home…he hates to be out and about. He withdraws when strangers ask him questions, try and talk to him, try and engage him. The stores are too bright, too noisy, too much. It takes too long.
The only good thing about stores is that things are neatly lined up on isles, but has decided that it is his job to make sure everything is ‘faced’ correctly and run his finger down the shelf edge the entire way, whether there are people standing in the way or not. When there are boxes of unstocked merchandise, he is driven to try and help them put the items on the shelf in the correct spot.
It is too much to remember the entire sequence of how to get ready by himself. Although he can get dressed, he needs to constantly be prompted continue with the task.
Too much interaction causes him to shut down eventually.
It isn’t enough to talk to her…you have to be face to face, down on the floor, actively playing with her and she better be able to use you as a jungle gym.
It isn’t enough to hold her…you must walk and dance and do interesting things or she isn’t happy.
It isn’t enough to feed her…you have to provide a variety of food and she must be allowed to feed you and mush around in it and throw it.
It isn’t enough to just hang out with the family…she must be out and about, she must see people, she must smile and interact and engage with every single person that walks by. She stops traffic and makes it difficult to get through stores because people are always stopping to ‘chat’ with the little social butterfly.
She must look at everything, feel everything, pull everything off the shelf to examine it.
She must do everything on her own, even when she doesn’t have the ability.
It is never enough for her.
She cries when the car stops and she realizes we are home.
How do I possibly balance this?
