I Am Joe’s Blog:

July 17, 2020 • 8:21 PM

Not Really OK

There’s a social convention whereby people say, “How are you?” as a dressed-up synonym for hello. It’s not really an inquiry about your well-being, just an empty greeting, and the only allowable answer is “Fine. You?” We all know this.

However, in recent months, quite a few people—friends, colleagues, doctors, my kids’ teachers, and others—have asked a different sort of question. Something along the lines of “So tell me seriously. How are you and your family holding up these days? With, you know, everything that’s going on. Do you need anything? Are you OK?” Words to that effect, anyhow. More elaborate phrasings meant to convey that the inquiry is sincere rather than perfunctory, and that an honest response is welcomed.

So I answer truthfully. And for months, the honest answer has been: Not OK at all. I, and we, are in fact doing quite poorly. Since you asked.

Well, then brows furrow and expressions turn more serious and more detail is sought.

“Do you have…The Thing? Like, are you seriously ill?”

No. So far, at least, no one in my family has had symptoms more serious than the occasional headache or allergy-induced sniffles. As far as I know, we haven’t come in contact with anyone who has The Thing. Physically, we’re fine.

“Oh. Well, did you lose your job? Do you need money?”

Again, no. In terms of money, we’re no worse off than before. We’re not rich, but we’re in no immediate danger of going hungry or losing our home. Financially, we’re fine.

I’ve been through so many variations of those two questions that I now just summarize: No, we’re ambulatory and solvent (for now, anyway). Moving on.

Further questions may involve an inadequate supply of paper products (nope, we have plenty), the lack of social contact (not a problem for us introverts), uncertainty about the future (no worse than usual, I suppose), or worries about extended family (everybody’s safe, thanks). And sure, we’ll make the usual complaints about the incompetent government and systemic racism and the ridiculous state of the world in general, the United States in particular, and especially that specific idiot right over there who’s not wearing a mask. But that’s no different from anyone else and it’s not why we aren’t OK.

So then we have to spell it out.

We have two young kids at home. One is ten years old and sad not to be around his friends and away from school, but he’s coping admirably with everything, and soldiering through the distance learning and the boredom. He’s not at his happiest, but he’s fine. We’re super proud of him.

Our six-year-old, however, is autistic, is non-speaking, has a bunch of developmental and learning disabilities, and has severe problems with emotional regulation, to the point that he is on two different psychiatric meds to reduce the chances of him hurting himself or others, both of which things have occurred quite a few times. He is also not yet potty-trained, and has had significant lifelong sleep problems, despite the interventions of various doctors.

And you know what? That is all OK, even though in some respects it also sucks. We love and accept our son, and we deal with the hard things, because that’s what parents do.

Or at least we were dealing with the hard things.

In the beforetimes, our son was not only in a special-ed classroom at school (with an amazing and caring teacher) but also had a full roster of specialists helping him out with his various areas of need: speech therapy, occupational therapy, physical therapy, adaptive physical education, and so on. We also, during some periods of time, had folks coming to our house to work with him, and the (very) occasional babysitter or respite provider for a few hours here and there of grown-up time.

But we’ve had none of that since March. And now that we know schools won’t be open for in-person instruction in the fall, we have no idea when anyone other than the two of us will be able to help care for him in any way. It’s just us, at home, all the time.

Our son requires constant—and I do mean constant—attention, to the point that we have to have negotiations about when one of us can go to the bathroom so we’re sure an adult is within reach at all times. Leave him alone for five minutes and we’re very likely to have a tantrum, broken objects, bruises, and oh I don’t know, how about swallowed cat litter? That sort of thing.

When his school switched to distance learning, teachers started daily Zoom calls and everyone was eager to give us long lists of web-based activities. Unfortunately, our son is unable to use videoconferencing as a means of communication. He can’t speak, he can’t type, and he understands only a fraction of what he hears. And he doesn’t have a conceptual grasp of someone on a screen trying to interact with him. We’ve tried dozens of times, and it just goes nowhere. He also has close to zero tolerance for all the screen-based educational activities, matching games, read-along stories, and other stuff the school district so eagerly pushes.

Where that leaves us is that any education, therapy, or other attention he’s going to get has to come from us, the parents. The best anyone has been able to do is try to coach us on how to be his stand-in teachers.

The thing is, the fact that we’re at home all day, every day, doesn’t mean we don’t have to work. We have jobs—jobs that require actual work to occur many hours a day if we expect to remain solvent—and we can’t do our work while also attending to our child’s every need during his waking hours (which, as I indicated, are far too many and not at ideal times). I’m now dangerously, desperately behind on crucial work projects and slipping further behind every day.

Even before the governor issued statewide guidance about under what circumstances schools may or may not be open, our school district announced that the 2020–2021 school year would begin with distance learning only, further developments TBD depending on what happens with the pandemic. And let me just say: in terms of public health, that is absolutely the right call, and I agree with it.

Except.

Not all students are capable of being educated remotely. Our older son is; our younger son is not. So for all the rhetoric that education is non-negotiable, as far as we can tell, neither the state nor the school district has any plan to address the educational and developmental needs of children like ours who absolutely, positively cannot and will not learn by looking at a computer screen and for whom parental instruction is not feasible. His needs are not being met, not by a long shot, and neither are ours.

Thus the irreconcilable facts are:

  • It’s currently impossible (meaning unsafe and/or illegal) for our son to attend school or receive other in-person care appropriate to his needs.
  • Our child’s disabilities make it impossible for him to learn remotely.
  • We, the parents, lack the skills, the time, and the energy to meet his educational needs; and we desperately need to work.

You can see how that puts us in a no-win situation.

And, as a bonus fact, we are emotionally at the ends of our ropes. We have never gone so long without any quiet time alone (separately or jointly), and it’s driving us (especially my wife) positively bonkers. We’re perpetually anxious, grumpy, impatient, and agitated, but not for the same reasons as most people.

When someone asks how I’m doing and I say, “not OK” and then explain all this, the response is usually awkward silence followed by changing the subject. Because what can anyone say? What’s wrong isn’t a problem that can be solved with money or food or time or medicine. I have an intractable problem, with no realistic hope of a solution in the foreseeable future, and that is why I am not OK.

Of course, that’s not entirely true. Someone could solve my problem, and that person is the specific idiot right over there who’s not wearing a mask. Yes, you. You—and everyone else who seemingly care so little about other human beings that you would rather risk destroying lives than suffer the tiniest inconvenience or the barest slight to your image. You could fix this whole thing in a matter of weeks. You could, but the evidence I’ve seen so far suggests that you probably won’t. I may have no recourse but to stop wearing deodorant and washing my clothes. Then I can at least guarantee you’ll stay (much more than) six feet away from me.

I kid, but not really. Like many other people in similar situations, I’m very much not OK, and I’m surrounded by people who seem committed to keeping me that way.

Since you asked.

Comments

  1. Michael Durrant
    July 18th, 2020 | 1:24 am

    Dear Joe,

    THANK YOU for your candid comments.

    It sucks! And … you’re right … he who won’t be seen on TV wearing a mask, lest it distracts people from looking at his magnificent hair … won’t admit there’s a problem, cos it might effect his reelection chances!

    I wish there was something constructive I could say, but there isn’t.

    My best wishes to you and Morgen from Sydney.

    Michael

  2. Jan Erik Moström
    July 18th, 2020 | 1:50 am

    Wow, I don’t know what to say … I can’t even begin to understand.

    This is something that I’ve never thought about before, I mean I of course understand some people doesn’t like staying at home but I’ve never thought about those in your sons situation.

    I … can’t come up with something sensible to say.

  3. Noor
    September 12th, 2020 | 2:12 pm

    Thank you for your authenticity and vulnerability.

    This may seem like a daring and obnoxious question (volitionally its not): how does this predicament serve the life purpose of all the members of your family?

    I’m not expecting a response here – just to provoke some thought.

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