Friday, August 12, 2016

Relentless Vigilance

One of my goals in writing this blog is to give a glimpse into what life is like with a child like Janey, a child with significant special needs.  It means a great deal to me that many people read this blog that don't have children like Janey, but want to understand her and others like her.  Some people also might read just because they are for whatever reason fascinated by autism, and I can understand that.  I used to read a lot of books about kids with autism, long before I ever had Janey.  I don't so much any more, probably because I read to get away from my own life a bit, but if I hadn't had Janey, I bet I still would.  I was thinking today, though, that there are two aspects of life with Janey and others like her that are almost impossible to explain with writing.  Of course, that never stopped me from trying!

Relentless     That's a harsh sounding word, but it's true. It doesn't end, this special needs parenting gig.  It never ends.  I admire and love teachers of kids with special needs.  They amaze me.  They teach Janey in ways I never could.  And part of that is that they get to go home at night.  I am glad they do.  They couldn't keep up that level of understanding and dedication all the time.  No-one can.  And that includes parents like myself.  I do the best I can, but at the end of some long days, I don't do much teaching or guidance or anything else but survival.  I do what it takes to get through the day---lots of videos, giving in to chips and ice cream, passing up opportunities to teach, playing the same song on repeat for hours just to be able to read a few more pages---all that.  Because there's no end of the day, really.  There is no weekends, no vacations, no retirement.  The job is forever.

You might say---that's true of any parent.  But in a lot of significant ways, it isn't.  My boys went to friend's houses, were in school activities, and by the time they were Janey's age, probably often preferred to have me a bit off-duty.  I never wasn't a parent, but there comes a point with most kids that you start being less hands on.  Now that they are 21 and 18, although of course I'll always be their mother, they are adults.  My active parenting with them is in many ways over.  With Janey, it will never be.

I imagine teachers and other professionals get very frustrated that their techniques and ideas and suggestions often don't get put in place once kids get home.  It's not that we don't want to, but imagine you were teaching a child like Janey around the clock, all week long, all month long, all year long, and you were going to be for the rest of your life.  I bet you would sometimes take the easy way out, be a bit of a slacker---not in ways that hurt or endanger the child, but in ways that let you make it to the next day.

Vigilant    Imagine how it was when your child was a toddler.  Imagine that they could only talk a little, not nearly enough to really tell you about any time you were apart, not nearly enough to explain medical symptoms, not nearly enough to reassure you that all is well in their world.  Then imagine putting them in a school bus with drivers you didn't really know, or having them in a daycare program you weren't completely confident was well supervised and staffed, or, being desperate for a night out, leaving them with a babysitter you found through an agency.  Imagine they somehow, although still being a toddler, looked much, much older, almost like an adult.  Imagine the fears you would have. Imagine how you might not take advantage of desperately needed possibilities for a break.  Then imagine that stage of life never ended.

I worry about Janey every single second she isn't right in front of Tony or the boys or me.  I worry because I've read some awful statistics about how vulnerable she is to abuse.  I worry because I have seen with my own eyes that not all programs for kids like her are anywhere near adequately staffed.  I worry because I took her to the emergency room of what was recently rated one of the best hospitals in the world and because she couldn't talk, because she was difficult to examine, no-one even touched her stomach, although doing so would have likely revealed her high fever was an indication her appendix had already burst.

If you've had a toddler, you know you would move heaven and earth to protect them.  Not that you wouldn't with any child---I would probably stare down a lion if it were trying to hurt William or Freddy.  But they can tell me if something is wrong.  They can speak up for themselves.  It isn't all up to me to make sure they are safe.  I'm able to give that responsibility to them, more each year.  But I can't with Janey.  I never will be able to.  I need to be vigilant, forever.  

Relentless vigilance.  That is it in a nutshell.  That is the part of life with a child with needs like Janey that really can't be fully explained.  It is why stress levels in parents like us are said to be much like those of soldiers in combat. But Janey, you are worth it, a million times over.  I will be relentlessly vigilant for you until my last breath.


1 comment:

kittyrex said...

Thank you for painting the realistic picture. I myself do not have a child with autism but I do read a lot on it, as my stepson has it.

This post of your struck true when you were talking about the eternal vigilance. My brother has a brain tumour and will die before the year is out. He needs 24 hour care because he has regressed to the level of a child within a adult's body. Constant redirection is required and he does a lot of things you don't necessarily want displayed at the world at large. I'm sharing the nursing care but, oh God, how tired I am. He can't talk, either.

I have the luxury of knowing that this will end, sooner rather than later, but if I was staring down a life sentence of doing it, I'm sure I couldn't do it.

Janey is so lucky to have you as her mama.