Us and Versailles

I was just re-reading my last post and I realized that I might, with my trying-to-be-clever reference to Marie Antoinette and Louis XVI, have given the wrong impression. We've never lived like aristocrats. We simply, until a year or so ago, accumulated a lot of debt without thinking much about it, paying for things we needed, and even sometimes for things we wanted, when we did not have the cash to legitimately do so.

But what do you do when the medical copayments skyrocket, when your school district assumes you're all loaded and arranges a ton of wonderful and pricey field trips for your (lucky) kids, when your (ratty old) car dies a shuddering death and you have to revive or replace it because one of you needs to get to work and the other has a zillion medical and therapy appointments, not to mention after school activities, to get the kids to? (Okay, take a breath.)

The difference between us then and now, is that now we do not pretend we can afford more than we can. We didn't go out much then; we go out less now (read: never). Now we shop at Aldi twice or thrice a month, instead of Trader Joe's twice a week. We used to occasionally buy clothes at Macy's; now we buy used duds more often than not (and you know what? It's not bad! You can get some great stuff that way).

The best thing that has happened to us in the past year is that we've taken our credit cards out of our wallets and put them in a drawer. Now, the only card we each carry, apart from our library and AAA cards, is a debit card. Of course, I resisted this mightily when Lars proposed it.

"What if there's an emergency?" I whined.

To which Lars replied, "Of what sort? Sartorial or gustatory?"

To which I replied nastily, "Medical, Smart One. Or automotive. Or one involving...something scary."

He held out his hand in silence until I grabbed my purse, took out my wallet, and dumped three cards in his hand.

"Fine," I snarled.

That was last March. And you know what? There's not been one emergency -- sartorial, gustatory, or medical. (There was one automotive emergency -- our Camry with almost 200K miles on it needing work that would cost more than it was worth -- and we did have to go into debt to resolve it. But the loan is super-low interest and we now have a grandmotherly, sandy-gold Corolla with less than 50K miles on it. It's not the Miata Lars has been fantasizing about but it's got a sort of elder-cache about it, which is something.

So I guess we were always dealing in sheep dung rather than dining at Versailles -- but now we embrace our inner shepherds. Marie Antoinette had a fake dairy barn, but we have a cute little house and no more credit card debt and a spiffy gold Corolla any Nana would be proud to own.

Holiday Gifts

This Hanukkah/Christmas season is posing an interesting challenge. In the days when we lived beyond our means (that would be most of our days until a year or so ago) I'd simply charge up a bunch of presents for the kids, for teachers and therapists. Not for Lars, though -- we can't justify spousal gifts except for something small on birthdays. Even when we were living like the upper-middle class people we weren't, we couldn't justify gifts for each other.

And really, we THOUGHT we were super economical, looking for deals, buying the least expensive remote control car or the paperback edition instead of the glossier hard cover. I'd go looking at TJ Maxx and Target for cute, cheap teacher gifts (tiny picture frames for $7.99 each, or a box of pretty little note cards for six bucks. Problem was, we had a boatload of people to buy for if you counted, along with the teachers, the therapists, music teachers, and SPED administrators we wanted to thank every year -- not to mention our dear nieces and nephews, my brother and sister-in-law, R-- and J--, and our closest friends. Grandma and Grandpa insist that we not buy them anything, and we gratefully oblige.

Anyway, this year we are no longer living like people who have expendable income, because we have even less of that we did before. Now that I am unemployed we have to ACTUALLY BE SUPER-ECONOMICAL and not just play at being shepherds and shepherdesses. We are no longer aristocrats, folks -- we are tending the sheep.

I actually don't mind sheep -- I find them rather sweet. So it's all good, but the problem is, how do you buy gifts when you have about $100 available for the whole shebang?

Here's what I've been doing:

• Making homemade assorted truffles and packing them in festive, be-ribboned bags for teachers, etc

• Searching Craigslist for used video games (most of the Chez Delaunay decor is brought to you courtesy of Craigslist, just fyi)

• Visiting Savers in search of that perfect shirt, pair of boots, or jacket for Saskia, and -- if we are extremely lucky -- for some kind of video game for Benjy

• Buying personal care items -- bath gel, moisturizer -- at TJ Maxx

I wish I could snap a photo of my truffle bags and post it here but Lars and I still use dumb phones, and we have lost the usb cord to our camera and can't upload pictures. Welcome to our world.

You know, I don't mind at all that buying/making holiday gifts is so much more work than usual. I think of it as a problem to be solved -- how do I take care of everyone and maintain my budget? And it feels REALLY good to know we are not going into debt just because someone decided you need to ply everyone with goodies at the winter solstice.

I'll save that for when I have to cough up a couple hundred dollars so Benjy can continue fencing in January. He loves it, feels good about himself when he does it. THAT will be money well spent.

Disability and Work

There's a thread spinning out on my autism listserv about autism and full-time work. This is an issue I've broached before on this blog, and it's one any parent of a disabled child (or child of a disabled parent, for that matter) has confronted. How do you adequately care for your loved one and be a good employee? And if you can't be a "good" employee (there might be different definitions of "good" out there) then how do you work it out with your boss?

Being a "good" employee, in many bosses' minds, means being at the office at the same time every morning and staying in your seat until five or six or seven o'clock. It means volunteering to stay late during crunch times and basically making every sacrifice for the good of the company. Businesses are all about the bottom line, and if you are not perceived as contributing to the accumulation of profit then you are likely to lose your job.

If your child has medical appointments in the middle of the day more often than, oh, once every eight months, you are likely to lose your job.

If you get called by your child's school and have to pick her/him up early because s/he is breaking down, and this happens more than, oh, once every eight months, you are likely to lose your job.

If you are a bit distracted because your life is going down the toilet, because disability reigns in your household and is a despot, you are likely to lose your job.

And if you don't lose your job, you are likely to be demoted. Or never promoted. And you might earn less than your co-workers, too.

Sometimes it's easier to just not work. But the cost of not working is astronomical over one's lifetime -- and of course, for many families this is simply not an option. I would venture to say that most disability parents are either struggling to make it at work and successfully do their second (or third) full-time job at home, or one adult in the family is not working and that family is broke.

We used to be a family of the former sort. I was teaching college English full time and taking care of a multiply disabled child, and I was doing neither very well. Then I reached my breaking point and dropped down to one class a semester. Boy, have we been feeling the pinch. And tonight I heard that the one class I was scheduled to teach next semester, in an unpopular 8 a.m. time slot, has been canceled due to low enrollment.

So here we are, desperately running the numbers, figuring what further cuts we can make to our already spartan lifestyle.

But I think I'd rather not work and give up even more than we already have, than be worked half to death and always feel like I'm not really there for my kids. Lars mentioned to Benjy this morning that I might have a lot more time for him soon. And you know what he did? He cheered. So now I'm happy.

Disability and Work

In an earlier post I talked about the price of disability, and a fair number of readers chimed in with their stories of financial stress due to caring for a disabled loved one. There is no question that families of the disabled take a HUGE financial hit. We are a good example of that: although I have worked since 2005, when Benjy was 5 years old, I have never been able to have a "real" career. I've worked as an adjunct professor at various colleges, earning very little but having the flexibility I've needed to be Benjy's mom. And I've been grateful for the flexibility, if not for having a PhD and earning less than my undergrads will earn when they leave college with their Bachelor's degrees.

But have I done a good job? At times, yes. Other times, decidedly not. When you are not sure you can keep your child alive, or even just happy, on a daily basis, that impacts your work. When you are worried about him being bullied or her being stressed at school, when you know he's going to come home with tattered fingers or a swollen lip -- his own way of dealing with the awfulness of his days -- you simply cannot focus.

I'm thinking of this now, because the one class I am scheduled to teach in the spring has not filled up. Not even close. And I have to wonder why. Is it the ungodly hour? (It's a very early class.) Could be. Is it me? Could be. Whatever the reason that students are not flocking to take my class -- and this is the first time in six years that they haven't, probably because last semester and this have not been successful ones for me -- I am likely to have no work after December. And that is at once a wonderful and a terrible thought.

The wonderful thought is that I would not be stretched in too many directions. I would not be worrying about Ben's safety, his emotional state, and what would happen when I got him home, while trying to teach. I would not be interrupted, constantly, while trying to grade papers or prepare for class. And I could devote myself entirely to being there for him and Saskia. No more partial attention. No more distraction at work and at home.

The terrible thought is, as little as I bring home each month, it's all earmarked for something. Imagining a one-salary life for our family, even if salary # 2 has been so negligible, is a scary thing.

But: I guess I can see it as an adventure. Can we do it? As a matter of fact, I think we can. I don't know for sure it's going to happen, this loss of income. But I do know that, if it does, it will be a HUGE relief. Even if it throws the earth off its axis for a little while.

Readers, have any of you struggled at work due to family issues? Have you succeeded? Failed? And how did you feel about it? Let me know!