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Independence when possible

Independence when possible

If Janey were able to tell me what she most wants in life, my guess would be it would be increased independence, and that can be heartbreaking to me.  With her intellectual disabilities and severe autism, she will never live independently, she will never be able to leave the house on her own, she will never indeed even be able to be at home alone for even a minute.  The few times she’s been able to express thoughts in this area, she has asked me to go inside while she plays outside.  Even that isn’t really possible—we live in a busy street in the city.  We sometimes stand just inside the door, to give her a little feeling on being on her own, but that’s the most we can do.

So lately, we’ve been working on ways Janey can be independent in the areas where it IS possible.  We’ve found a bonus in this—it makes life a lot easier for Tony and me, and gives us a bit more time to ourselves.  It’s a true win-win.
We had a breakthrough a few months ago with the shower.  As you might recall, Janey adores showers.  She will happily take four or five a day.  Once she hopefully starts getting social security, I think most of the money will go to our water bill!  But we have gotten weary of the shower routine, which we somehow assumed we always had to do most of the work for.  Then she surprised us.  One of the those nights when we simply couldn’t keep our eyes open any longer, after she had been awake night after night, she got tired of waiting for us.  We awoke to find her soaking wet, having given herself a shower.  We rushed back to turn off the water, but otherwise, all was mostly fine.  
We had no idea Janey knew how to turn on the shower.  It’s a little complicated, like everything else in our old house.  And the next day, when she asked for a shower, we told her to start one herself, to try to see how she did it.  Well, she just stood there.  We decided to wait it out, and finally, after 38 minutes (we kept track), she got into the shower and reached up and turned on the water.
So—the jig was up.  Now, when she asks for a shower, we tell her “Go ahead!  Take a shower!”  And she does.  It sometimes takes a very long time for her to do all the steps, but she’s happy, going at her own pace and working toward what she wants.  I still wash her hair when it needs washing (maybe someday we can figure that one out, but not yet!) and we block access to the shower now at night, to avoid water being left on for hours and overflowing (turning OFF the shower isn’t in her toolkit yet), but during the day, if she wants five showers, she gets them, and we get a little break.  We check on her a lot, we make sure all is well, but mostly, she does it on her own.
Another breakthrough, one that took Tony and me stupidly long to figure out, was TV access.  We have an Amazon Fire system to access the streaming services we have, and even for us, it’s not the easiest thing to figure out.  For Janey, despite us trying very hard for years to teach her, it seemed impossible for her to learn.  So when she wanted to watch a show, she’d come to us with the remote and say “I need help!”  Which we were happy to do—for the first 5 or 10 times an hour.  The problem is that she doesn’t generally just watch a show or movie all the way through.  She like the intros or certain scenes, something she can do easily on her phone and tablet, but something beyond her on the “big TV” using the remote.  
Finally, we realized that all the streaming services can be accessed by computer.  Janey uses a mouse with ease.  I’m not sure why she can use a mouse but not a remote, but I think it has to do with the visual cue of the caret on the screen.  Our TV is set up so it can also be a computer monitor, with the push of a button.  So—we “lost” the Fire remote.  It stays lost at any time Janey is home.  If she wants a show, we tell her “You know how to do it!” and she does.  She switches easily between services and YouTube and rewinds and repeats to her heart’s content.  It was a rough few days at first, with many hours of “I need help!”, but when she realized the remote was “lost” for good, she adjusted.
This is an example of something that we should have figured out years ago, and you might wonder why we didn’t.  I think part of it is we just get tired.  It can feel easier in the moment to once again put on a show for her, to say “Okay, one last time!” when we know it’s not one last time, than to take the time to figure out how to change things up.  I have a feeling most of you caring for someone like Janey get that.  Constant tiredness, constant vigilance—those are not friends of innovation.
The third area we’ve made some progress with is Janey being awake at night.  No progress in keeping her from BEING awake at night—we’ve realized that’s probably not going to happen.  Janey goes in cycles.  For a few weeks, she sleeps more than most people—sometimes going to sleep soon after coming home from school and sleeping all night.  Then there might be a few days of near typical sleep.  Then….the few weeks of very, very little sleep, where she can be up nights in a row with NO sleep, or sleep only a few hours a night.  
These times are currently the hardest part of being Janey’s parents.  It’s no coincidence that being prevented from sleeping, being woken all night, is sometimes used for torture.  When we are up all night with Janey, we simply don’t function at all close to normally during the day.  We are in a constant haze.  So, figuring out the nights is a priority.
We are lucky in a few things.  Janey is not an eloper.  She doesn’t try to leave the house.  Over the years, we’ve childproofed, or Janey-proofed, so that she can’t get at things that aren’t safe for her.  But still, when she didn’t sleep, we didn’t sleep.  Part of that was just habit—even though she now was pretty safe at night awake on her own, we couldn’t relax.  And partly, it was because if she ran into something she wanted we couldn’t help with, she’d wake us up.
This problem isn’t solved, but it’s better.  We have started setting things up for Janey to access in the night.  Her phones and tablets are always accessible and charged, and we finally figured out (thanks to Freddy, our in house IT guy) how to take the passwords off them safely, so she doesn’t need to wake up to constantly reinput the passwords.  We started leaving food Janey likes front and center in the fridge, leftovers for her to find.  She can get herself a midnight snack if she wants.  And now, we can better doze as she’s awake.  Not totally—she can be loud, and she still wakes us fairly regularly, but our sleep (and by our sleep I’m doing a disserve not to say Tony’s sleep, as he has always done the lion’s share of the night shift) is more than it used to be.
It’s striking me that it’s fairly little things like this that make life easier—finding small ways to let Janey be the adult she is, and let us be the tired late middle aged people we are, letting us co-exist in a way that works a bit better for all of us.  There’s areas that can’t be changed—Janey is not going to learn how to drive so she can take herself for the car rides she so craves—but at times, it feels like we are making progress in figuring out, after 18 years, this unique lifestyle.
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