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Sunday, April 19, 2015

Just Janey

Our Sunday morning---Janey is playing "Born to Boogie" by Hank Williams Jr. over and over on the iPod.  Tony is cooking his non-stop weekend breakfast of bacon, greens and toast.  Coffee is flowing freely.  And I am thinking that this day, this week, is a preview of the rest of our lives.

It's just Tony, Janey and me here.  William is at college, and Freddy is, amazingly, in Venice, Italy.  Thanks to the generosity of his school and his uncle, he's on a school trip through Italy for the week.  And we are getting a glimpse of the life we will most likely live until we are no longer here to live it.

It's not a bad life, right now.  Janey has been in a good mood for a few weeks now.  It's not a perfect mood---she can fly into a rage several times a day, and she is often very upset if what she asks for doesn't happen immediately.  But compared to how her moods can be, it's wonderful.  She loves to be on the go, and she and Tony spent yesterday on numerous errands, which she enjoyed very much.  I miss the boys very much, but I know they are happy, and I admit it's somehow freeing to have only one child to take care of.

But forever?  That is the part that sometimes feels very tough to think about.  There's a chance, of course, that someday Janey will be in long term care.  But I like to live in reality.  From all I read, it's very, very hard to find care for someone like Janey.  Only about 15% of autistic adults that can't live on their own have housing not with their parents, from what I've read, and most of those are adults able to function at a lot higher level than Janey.  Janey would need round the clock care.  That is expensive and rare.

From what I am told, I need to start right now working toward the goal of Janey living away from home.  The route for doing so is not something I'm ready for at this point---it would involve giving up more control of her care that I am willing to do right now.  Maybe I'm being shortsighted.  There were certainly days last late fall I was ready to do just about anything needed.  But lately, the new medication and the new behavior plan at school seem to have calmed Janey.  I can picture, if things stayed as they are right now, a life that involves Janey home with us for good

Yet even as I write this, Janey comes over to me and says "Want to snuggle?"  This means---stop whatever you are doing right now and give me undivided attention.  If I tell her to wait, she screams, hits me, freaks out.  I get her dressed, and while doing so, ask her to get me a pullup, something she easily understands and can do, and she gets hysterical at the request.  After ten minutes, I am exhausted.  But incidents like that blend into the day, and if they don't last all day, I still think of the day as a good day.  I think that is why even on a "good" day, I am tired, at the end of my rope, by the time Janey finally goes to sleep.

Life with Janey feels full of impossible choices.  Do we push all out for away from home care for Janey, even though we are unsure that is what we need right now, so we'll have a better chance in the future?  Do we resign ourselves to a future that is quite limited by Janey's needs, or do we do what we can to preserve a life that is fuller for us, but uncertain for her?  Do we gamble on our health remaining good enough to care for her long term?

There are no easy answers.  And our choices are far from unique.  Around the world, so many others are living a life like ours---with children getting old enough to start the questioning---will this be how it is forever?  Sometimes, I admit, I wish myself back to William or Freddy's age.  I wish I were in college, or on a tour of Italy, my life ahead of me.  But I am here.  I need to figure out how to make this life work for all of us.  To all of you out there facing the same questions---best of luck.

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