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.
5 comments:
Suzy...I don't think I'm the person you speak of in this piece--at least I don't remember ever mentioning the oxygen masks on the airlines--but I DO remember mentioning, several times, that you must take care of YOU if you are to be able to take proper care of Janey--and of Tony, and of Freddy and William. And when you're not taking care of YOURSELF, you're certainly not going to be able to do that!! Try, can you try, to shift the feelings of guilt to being felt when you don't take care of yourself because you therefore, can't take care of THE REST OF THE FAMILY in the proper way?? And as for "imposing" on the teachers who have to take care of Janey when she cries--it's part of their job--it's what they're there for, and if they don't realize that, then they shouldn't be there! Been there!!
Thanks, Judy! That might HAVE been you with the oxygen comment! The teachers have never made me feel guilty---to the contrary, they try to help me NOT feel guilty---that's just my own hangup! The minute Janey cries, if I'm not in 100% charge of her, I feel like I should be. I had a great nap this afternoon, and I'm going to relax and watching Breaking Bad with Freddy as soon as he comes home, and try very hard to have NO GUILT!
I have a crier-at-the-end-of-the-day too, and it hits me hard to know that Tate really would do best being picked up at 3:30 every day instaed of 4:45 or 5 when I'm doing with work. But sometimes it helps me to think abotu it from her perspective - does she think "My mommy's not here because she doesn't care about me as much as her work, and I feel abandoned"? No, she thinks "I'm tired, I'm going to express that the only way I know how which is to cry a little." And on the days when I am able to get her early, you know what, she is still tired by around 4, and still might whine or get grumpy at home to express that, so not even I have the magic ability to make her not feel tired and worn out by her day. And I even think about myself as a kid, with a working mom - I didn't feel abandoned, I just felt like this is how it is, I'm here and my mom's there, and she'll be here with me at the end of the day. I didn't feel like she was choosing not to be with me, it was just a fact that we were sometimes apart.
I think it was me who made that comment, only because a very good therapist told it to me and it really resonated at the time. I think, like a lot of parents of kiddos with special needs, I was running myself ragged. This therapist was quick to point out that I could do no good when I was exhausted. It's a terrible cycle that needs to break somehow: one feels bad that s/he's not there for the child->the child is also tired, and responds to the parent in kind-> the parent tries to do more and gets more exhausted/feels guilty…the taking time for oneself is a way to stop the vicious cycle.
I, too, found that "guilt" was underlying a lot of what I did. When I was younger, and a student,"guilt" was how I motivated myself to always "do good" - be the best student, the best dancer, the best daughter…but it's such a double-edged sword. I had to learn of other things to motivate me. I finally found it a few years ago: I am motivated by happiness…both my own and the happiness of my children. I use all the energy that I used to put into "feeling guilty" and now use that energy toward doing something to work toward that happiness goal. It's tricky to do, and often I caught myself dwelling on feeling "bad" (being raised in an Asian household and a Catholic may have had something to do with that! :) )….but I just had to remind myself that my energy is limited - and what a waste to spend it on guilt!
You are doing great - heal yourself first. You will have the energy to think of a different plan later for Janey, if necessary. But now, she seems good (from your last post!) and happy… :)
It's great talking to you all about this! Thanks so much for your perspectives. I love what you said about putting the guilt energy into happiness! That is such a positive idea. Janey is happy, usually, when we are happy. Doing things only to relieve my guilt might actually in a way be a selfish thing, because I am not necessarily doing what really makes her happy that way.
Sara, you made me think how I especially since Janey going to after school so I can work a little, and that is a valid thing! And Janey really isn't think "Geez, that selfish woman, why is she not here with me?" I liked it that my mother worked. And Janey is just like Tate---if she is going to be tired or cranky, she'll be so with me or with whoever!
It was like today Janey decided to prove her own point. She was SUPER happy when Tony picked her up at after school, and this was the best night we've had in probably half a year. She never stopped smiling. I'm starting to think what she was crying about the other days was the routine being different---after school NOT having started yet. Who knows? I'm going to try to just relax tomorrow!
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