Tallying Up

Charlie at the grocery store  Friday was a 7 to 7 kind of day. Charlie woke up at the completely reasonable time of 7am; did well at school (enjoying a trip to the library in the afternoon; doing good with the helmet fading program—he's been going without it for increasingly longer increments of time in the middle of the day); waited patiently while we ran some errands; went on a short walk; used the computer; did a little grocery shopping; asked to use the computer again and then told us "bedtime." And went to bed. And fell asleep by 7.30pm.

I think he's still catching up on his sleep after Thursday's very early wake-up and even Tuesday's not quite as early start to our day. As I reflect on things, it's often the case that it takes a couple of days for Charlie to recoup himself—it takes a couple of days for disruptions in the usual scheme of things to run their course in him. As it is, I've the sense that we're fortunate that Charlie does sleep for at least couple of hours every night. We have friends whose children only sleep for an hour or two at a time on a regular basis, or who wake up at 3 or 4am every single day.

Getting some sleep is a bit more of a concern for Jim and me now as we're both back to work teaching and that fuzzy-headed feeling isn't really what you want when trying to explain the passive voice in Latin to students who don't recognize the passive voice in English. Charlie must detect the little extra sense of rushing around, of us making sure that we have our books and materials and constant checking of the clock to make sure we won't be late for our classes.

There have been times throughout Charlie's life when I've wondered if all the stress of me working wasn't so great that it might be better if I didn't. I'm able to set up my teaching schedule to drop him off and pick him up at school or to meet the bus; I've still had many a hair-raising drive back from Jersey City when there was traffic or I couldn't extricate myself from my office fast enough. There's no one here to stay home with Charlie should he get sick so one of us has to cancel class (I was occasionally able to take Charlie to class with me when he was younger, but that became impossible years ago). Jim teaches in midtown Manhattan now but for some years he taught in the Bronx so he had a much, much longer commute. 

But thoughts of not working are always passing ones with me. I like to work and the numerous responsibilities of my job, while at times causing some of the above-noted stress, have ultimately helped me in taking care of Charlie, precisely because my job—teaching Latin, ancient Greek, and classical culture at an urban Jesuit college in Jersey City—requires me to think about something other than autism, IEPs, treatments and therapies. Charlie being an only child, there's so much focus (as in, pretty much total focus) on him, and I more than think it good that he understands, Jim and I both have other things we do. 

And, to be quite honest, I'd probably be seriously more strung-out without my job because of the additional financial stresses we'd have without my salary. Yesterday's New York Times had a piece on the "dealing with the financial burden of autism" that reminded me of why I feel so fortunate that, for almost every year since Charlie's diagnosis in 1999, I've been able to work at least part-time (Jim, of course, has been working the entire time, while often enduring some crazy commutes as we've tended to live where the school situation was best for Charlie, but not for a dad who rides the rails to work). We've spent quite a bit in the interests of our boy, from the early days of providing for his in-home 40 hours/week ABA program, to various therapies, to visits to medical professionals most of whom aren't covered by our insurance (I have, though, gotten better at filing claims over the years), to renting an apartment in a certain school district so Charlie could go to school there, to random extras (the plumbing bill, for one thing, from the days when all manner of colorful plastic items went missing on a regular basis).

I still prefer not to think of all this, and of autism, and of Charlie, as a "financial burden." As I wrote when a study was published estimating that it costs $32 million to take of an autistic individual over the span of his or her lifetime:

Every $ my husband Jim and I have spent, are spending, and will spend on Charlie is the best thing we could do with our money, down to the last penny, and not to “recover” Charlie from autism.


Because he’s Charlie. Because he’s worth it.


Frankly, we would have spent quite a bit on Charlie regardless, just as my parents did for my sister and me. One could (rather facetiously) argue that, things being as they are, Charlie saves us a bundle in not demanding the latest electronic gadgets (I'm still setting up the iPod Touch my parents got him for Christmas; he prefers the battered case of CDs); new Nikes or any sort of "in" clothing; tickets for this or that; who knows what kinds of lessons; and on and on. 

And ok it's a cliché, but life with Charlie has definitely taught us that it doesn't take much to make you happy. In our case, Charlie not getting all upset when the CD player in the white car is not working. And: A good school day. A good day at home. A string of good days—but let's not gild the lily; one day at a time.

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Comments
18 Responses to “Tallying Up”
  1. Jen says:

    It’s an interesting question- while I don’t consider it a ‘burden’, there’s no doubt that I’m considerably less financially comfortable than I would have been if I’d been able to work after the kids were born. But that wasn’t possible- I’ve tried a few times, but with 3 kids on the spectrum, it just never worked out.
    I don’t ever blame the kids, or their autism, but it sure would have been nice to have the finances work out a different way. I’m used to ‘living poor’ now, but I can’t deny that it’s pretty scary when I look at the future. In four more years the kids will have all moved out, and I’ll be able to work again (after being out of the workforce for 19 years at that point), but beginning to save for retirement at age 50 doesn’t leave me with a lot of hope that my old age is going to be particularly comfortable. Fortunately I won’t have to worry about the kids’ finances too much, but I’d be lying if I said that I wasn’t pretty concerned about myself, and I’ve talked to a number of other single parents who are in the same boat.
    Oh well, at least we don’t have to worry about health insurance, and I do have experience with being poor, so things could always be worse! It’s certainly all been more than worth it.

  2. “And ok it’s a cliché, but life with Charlie has definitely taught us that it doesn’t take much to make you happy. In our case, Charlie not getting all upset when the CD player in the white car is not working. And: A good school day. A good day at home. A string of good days—but let’s not gild the lily; one day at a time.”
    Well said. And I like your new blog approach with more pictures of Charlie.

  3. Shhaw says:

    Sounds much like a “typical” week for those of us who are parents of autistic children. Typical weeks generally mean good weeks in our family. The questions and worries go hand in hand with the laugs and the smiles.

  4. autismvox says:

    @Shhaw, you said it!
    @Harold L. Doherty, Jr., thank you; one day at a time, with one’s eye always on the long view.

  5. Louise says:

    Christina, I know this seems like a financial stress, but would you and Jim be able to find a college student/aide who would be able to pick Charlie up from school, or drop him off, so that you and Jim wouldn’t have to break up your working day for these things? You obviously have to maintain a “window” of flexibility – perhaps you could build that into the job description.
    It just sounds like you could do with a helping hand. $250 a week would be cheap to give you both some physical breathing space. How long do you think you can both keep up this schedule, physically?

  6. Louise says:

    Christina, I know this seems like a financial stress, but would you and Jim be able to find a college student/aide who would be able to pick Charlie up from school, or drop him off, so that you and Jim wouldn’t have to break up your working day for these things? You obviously have to maintain a “window” of flexibility – perhaps you could build that into the job description.
    It just sounds like you could do with a helping hand. $250 a week would be cheap to give you both some physical breathing space. How long do you think you can both keep up this schedule, physically?

  7. autismvox says:

    @Louise,
    thanks for the great suggestion; we’ve tried something like that in the past. I frankly like being able to pick up Charlie—helps me to stay in touch with his school and teachers. Things are much easier now, as I really don’t have to rush like I used to, in order to meet a school bus—-the staff at his new school are more flexible if I’m a few minutes behind schedule.
    We’ve both been running for years and plan this summer to get Charlie started running too.

  8. autismvox says:

    @Louise,
    thanks for the great suggestion; we’ve tried something like that in the past. I frankly like being able to pick up Charlie—helps me to stay in touch with his school and teachers. Things are much easier now, as I really don’t have to rush like I used to, in order to meet a school bus—-the staff at his new school are more flexible if I’m a few minutes behind schedule.
    We’ve both been running for years and plan this summer to get Charlie started running too.

  9. autismvox says:

    @Jen,
    No job here, no health insurance! Such is the US……
    For sure, taking care of Charlie has affected what both of us can do in our jobs, me a little more I suspect. If I didn’t have my current job, I don’t think I would have been able to have worked full-time still. Wanting, and needing, to provide for Charlie as we wanted to (in terms of time and resources), factored in our deciding only to have him.
    The college I work for is a very modest place (and not very large, in terms of student enrollments—though we would love to have more students) and my primary responsibility is to teach, teach, and teach. And teach. I wanted to do more in administration and thought I’d try to go in that direction for a few years, but (from the view of hindsight), I realize that it’s just not possible to take care of Charlie the way I am comfortable with and fulfill the demands of an administrator—meetings and the like. And I’m glad to be able to focus primarily on one things, Classics.
    Jim is further along in his career than me and has never had as large a teaching load (well, this semester he has more students than me, for fewer classes). But I don’t have to do the sort of scholarly research that I would have to do at a larger university; I never go to academic conferences unless they are nearby. And my school is a bit different from many: Being so small, and with so many needs of its own (to be quite honest—we cut corners all the time, starting with janitorial services and a hiring freeze, and more budgetary measures are right around the corner), it is a kindly place. My frequent and unexpected absences to take of Charlie are kindly accommodated (though sometimes I fear I’m in danger of overdoing it).
    Small complaints, really—am frankly glad to have a job at all. Finances and where Charlie will be in the future are a little more hazy for us, though we know what we would like for him, and where that would be.
    (Both of my guys are dozing on this sunny Saturday so I’m off to get some things done………..)

  10. autismvox says:

    @Jen,
    No job here, no health insurance! Such is the US……
    For sure, taking care of Charlie has affected what both of us can do in our jobs, me a little more I suspect. If I didn’t have my current job, I don’t think I would have been able to have worked full-time still. Wanting, and needing, to provide for Charlie as we wanted to (in terms of time and resources), factored in our deciding only to have him.
    The college I work for is a very modest place (and not very large, in terms of student enrollments—though we would love to have more students) and my primary responsibility is to teach, teach, and teach. And teach. I wanted to do more in administration and thought I’d try to go in that direction for a few years, but (from the view of hindsight), I realize that it’s just not possible to take care of Charlie the way I am comfortable with and fulfill the demands of an administrator—meetings and the like. And I’m glad to be able to focus primarily on one things, Classics.
    Jim is further along in his career than me and has never had as large a teaching load (well, this semester he has more students than me, for fewer classes). But I don’t have to do the sort of scholarly research that I would have to do at a larger university; I never go to academic conferences unless they are nearby. And my school is a bit different from many: Being so small, and with so many needs of its own (to be quite honest—we cut corners all the time, starting with janitorial services and a hiring freeze, and more budgetary measures are right around the corner), it is a kindly place. My frequent and unexpected absences to take of Charlie are kindly accommodated (though sometimes I fear I’m in danger of overdoing it).
    Small complaints, really—am frankly glad to have a job at all. Finances and where Charlie will be in the future are a little more hazy for us, though we know what we would like for him, and where that would be.
    (Both of my guys are dozing on this sunny Saturday so I’m off to get some things done………..)

  11. feebee says:

    We just had a four-figure plumbing emergency last week. Le sigh. It’s so good to know we’re not alone!

  12. feebee says:

    We just had a four-figure plumbing emergency last week. Le sigh. It’s so good to know we’re not alone!

  13. autismvox says:

    Yikes! We’ve never had one that big—well, we did have to replace a certain bathroom fixture and a couple of pipes at one point—but I figure if I added up all the times the plumber was summoned, it would be “a bit.”

  14. autismvox says:

    Yikes! We’ve never had one that big—well, we did have to replace a certain bathroom fixture and a couple of pipes at one point—but I figure if I added up all the times the plumber was summoned, it would be “a bit.”

  15. Regina says:

    ‘Glad to hear that Charlie has readjusted his clock and hope it continues (maybe it’s the powerwalks of the past few days), and especially for your report that the BAC is fading the helmet and Charlie’s doing well with that. That’s very good news.

  16. Regina says:

    ‘Glad to hear that Charlie has readjusted his clock and hope it continues (maybe it’s the powerwalks of the past few days), and especially for your report that the BAC is fading the helmet and Charlie’s doing well with that. That’s very good news.

  17. autismvox says:

    They’ve been fading it about a 1/2 hour a week—hope that can continue, needless to say!

  18. autismvox says:

    They’ve been fading it about a 1/2 hour a week—hope that can continue, needless to say!

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