Payback

Another photo of Charlie on the merry-go-round Wednesday (which was my mom and dad's 47th anniversary)  Mothers of autistic children pay at work reads the headline of an article about a newly published study in the Social Science Journal. Washington State University Vancouver researchers studied 326 families in Washington and Oregon who had a child on the autism spectrum. The study found that

….. about half the women worked fewer hours to accommodate the needs of their child — usually doctors and school visits — three out of five had not taken a job because of their child's autism, 25 percent took a leave of absence, and about 25 percent refused a promotion. As a result, nearly 60 percent said they suffered financial problems in the past year, the study said.


Mothers of autistic children have to deal with extra doctor's appointments, day-care conflicts and meetings with teachers — scheduling problems an employer could work around, [lead author Dana] Baker said.


I can believe it. 

I work full-time but I don't have a 9-to-5 sort of schedule. I set up my classes to accommodate Charlie's school schedule and other needs, and Jim being a professor too means that he is also able to drive Charlie to school or pick him up, or spend time with him after school. We can both do a lot of work at home thanks to the Internet, too. Nonetheless, I have had many a hair-raising drive home on the highway to pick up Charlie and there have been many, many meetings that I have not attended in order to pick up Charlie (and therefore, some opportunities at work that I have not been able to pursue). And, I have had to cancel classes when Charlie woke up coughing and sick, or when he had a school holiday that didn't coincide with my college's. 

While I've always managed to get every thing I had to done at work, taking care of Charlie has definitely made things challenging. It happens that my college emphasizes teaching, which is good. But I'd like to have done more scholarly writing about Greek and Latin literature (which requires hours spent researching and reviewing articles in hard-to-find journals in a university library) and much more translating. It's not easy at all to go to professional conferences; I've limited my attendance to those within an hour or two's distance, and haven't gone to any at all in the past few years as conferences tend to be on weekends and weekends are times when Charlie, as he isn't in school, has had more trouble. (More in this vein at Care2.com; the Pew Research Center just published a study that, in the US, fewer women, and in particular fewer women with masters and doctoral degrees, are having children.)

I know I'm lucky to have the job that I have; most other jobs wouldn't have the flexible hours, for sure. Ultimately I've been all right with the way things have turned out. When I've thought about something like my 'legacy,' knowing that Charlie had a good life and that he felt loved and that he knows how much we all love him, and that he achieved all he could— sorry, guess I may as well just cue up the violins—that means it all. Books and all that: Yes, I've a book in my head that I do want to see the light of day and there are quite a few things I'd like to accomplish in my job before saying 'the end.' But it's never been hard for Jim or me to say that Charlie comes first.

Charlie being off this week, our focus has been 110% on his needs. After the very full day that was Wednesday, we decided a quieter, home-based Thursday was in order. Charlie slept in (almost till 8.30—well, a lot later than 4.30am). He did walks and bike rides; we went too many times to the convenience store. Around noontime, Charlie put on his swimsuit and announced that he was going to sit in the white car.

Due to impending thunderstorms, Jim and I figured that Thursday was not a beach day.  We talked a little about going tomorrow (i.e. Friday, today) but not a lot in Charlie's presence. Charlie tends to hear the words ('beach,' 'ocean') that stand out to him, and 'we'll go to the beach tomorrow' can be hard to grasp when you've already got the boogie board in the back of the car. 

But then Charlie came back into the house and said he wanted to put his shorts on. 

We proceeded to go on a living driving tour of the Bergen County town where Jim went to high school. Charlie said a lot of 'I want' 's on the way back and was ok when we said we'd get him something once we were closer to home. He asked for a burrito and, quite to his delight, we got him one (and my dad added an order of guacamole to have at home, but Charlie ate it in the car) (nah, my dad didn't mind at all).

And we were glad to have a quieter day if not exactly a 'day off.' 

We do always have to be 'on' around Charlie. Seeing him sparkling on the merry-go-round Thursday, able to do things he'd never been able to on his own—sure most kids do get on the merry-go-round horses by themselves at a much younger age; the things is, Charlie did it, Charlie can do it—just being with Charlie: It really is a beautiful payback. 

For us, enough.

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Comments
4 Responses to “Payback”
  1. Linda says:

    Charlie is really growing and changing. This is an exciting year as he figures it all out more and more each day. Thrilling.
    Thank you for writing.

  2. Leila says:

    I think the fathers make sacrifices in their jobs/careers too, but the study just reflects the reality of a majority of men having higher-paying or more stable jobs than their wives, hence the decision tending to be the mom leaving the job or reducing hours rather than the father. It doesn’t always happen that way in all households of course.

  3. autismvox says:

    Perhaps it might be of interest to find out how many fathers of autistic kids decided not to work to be the stay at home dad……

  4. Melanie says:

    I have been fortunate to have a contract position with my former company, and it seems to provide just enough $ to help with the “Oh No!” household events. If my project team needs something, they email it over, I do it while my son is in school or sleeping at night, and I send it back. They know when I’m usually available, but have been great about respecting the need to put therapy sessions and school meetings first. For 6 years it’s worked really, really well, and I am very grateful! This also allows me to keep at least a small portion of my career alive. To Leila’s point, my husband chose (a long time ago) to take a path within the company that allows him more active parenting time. Yes, this does reduce long-term career options, but we’d made that decision before autism ever entered our world. I think his greatest sacrifice came when he had to stay in a painful work situation for a while because we were afraid to jeopardize our health insurance. I would bet that sort of situation happens a lot with special-needs families. If one is able to get health care that includes a unique child, then leaving that group insurance situation is a scary proposition!

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