I've had some horrible jaw pain off and on for about a month now. I keep hoping it will go away, as pains usually do, but it hasn't. I'm sure it's nothing serious, but it's been bad enough today that finally tomorrow morning I have a doctor's appointment. I wanted one sooner, like today. But by the time that around 10 am I realized the pain was enough that I really finally needed to give in and get some help, it was too late. Too late because by the time I could get an appointment, I'd be too late to greet Janey's bus.
Now, that's not just an autism problem. Of course, everyone needs to be home for their kid's bus. However, what hit me today is that most people would have options if it were just impossible a certain day. They would have people around that could care for their child. The child might be in after-school. And at 11, Janey would probably still be a bit young, but by 12 or so, she could come home alone even if really need be. I had none of those options. Nobody can watch Janey but Tony or me. It's not that they wouldn't want to---it's that they honestly are not able to do it. She is too tough. The after school program has a ratio of students to kids that effectively excludes Janey (and I know the law might say they HAVE to provide for her, but what the law says and what can be done without a long, expensive fight are not the same thing). She certainly can't stay alone, ever. The only option would be having Tony come home early. Because of all the time Janey spent in hospitals the past year, he doesn't exactly have a ton of sick leave left, so that is a total last resort. And so---I couldn't make the appointment for today.
This is a little example of something that comes up over and over. I appreciate people telling me to take care of myself. It's a very good reminder that I should rest when I have a chance, and not feel guilty about it. Sometimes, though, taking care of myself just isn't possible. Even making the call today to get the appointment involved talking over Janey's screaming, as she was upset I was on the phone. A lot of times feel like that. If I take care of myself, I am not taking care of Janey. As if to illustrate, as I tried to edit this paragraph to better say what I want to say, Janey asked me to cuddle her. I tried briefly to put her off, and she started screaming, biting herself and by the time a minute was up, she was hysterical. Ignoring her is not an option.
And I am one of the lucky ones. I have a husband who does more than his fair share. I have school, which allows me to nap when I haven't slept and to do dishes and laundry. There are people who are single parenting, or have adult children with autism no longer in school, or have other young children. I won't say I don't know how they do it, because I hate that phrase. But I know their lives are far harder than mine is. And mine, to be honest, is fairly hard at times.
I asked on my Facebook page that is a companion to this blog about what respite people have. I am going to write more about the answers (without names, of course!) in a future blog entry. But I can already see that countries other than the US do a MUCH better job than we do here. Here, it seems much depends on the state, or the county, or city, or even part of the city you live in. It depends on figuring out the complicated systems. And even with work and determination and knowledge, there is often just no help available. That is a disgrace. I am not political. I am not blaming any party or ideology. Autism doesn't play politics. This is something that is going to affect EVERYONE. If the rate of autism is what it's said to be, then there are going to be a very lot of families that just can't keep functioning, keep working, keep paying taxes, and it's pretty foolish to not spend the amount needed to give desperate families a little time for such luxuries as doctors appointments and sleep.
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