I've always been prone to feeling guilty about everything. My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot. And that's about true. I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about. So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.
This is coming up in my mind today because it's the first day of after-school. After-school runs at Janey's school from 3:15, when school gets out, to 5:30. We always pick her up at 5, though. Last year, Janey wen to after school every day, and it was wonderful. She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover. I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day. So why am I feeling so guilty?
Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer. I know she sometimes cries at the end of the day, looking for me. And I feel in some very deep part of myself that if she is crying, she should be with me. I was thinking about that this morning, and trying to understand that. The truth is, I am not much better at keeping her happy than anyone else she trusts and loves. In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot. But if I think of her crying at after school and me not being there, I feel hugely guilty anyway. Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job. Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't. Or maybe it's just because crying hits me very hard.
But I've been thinking a lot of something someone said to me, on my Facebook page for this blog. I wish I could remember who, so I could give them credit! They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children. I try hard to internalize that. I do need to stay strong for Janey. I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon. I need to rest then. And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.
I think many parents of autistic kids struggle with guilt. We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them. It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather. We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it. We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite. We know all that, but still---we feel guilty. And we feel guilty about feeling guilty. I'm going try, just try, to not think about shoeless ducks, at least sometimes.