On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.

What does Janey think about?

Of course, we never really know what anyone else thinks about.  But with Janey, I have no inkling at all.  She never refers to past events.  She never tells me what she does when she's not with me.  She has never told me a dream.  She's never told me about a disappointment she felt.  She's never said what she hopes the future holds.  She's never even told me the little things, like what her favorite color is.  Her mind is a mystery to me.

I get glimpses of Janey's mind only by her telling me her immediate wants, and even those are limited to a very few categories---ones relating to food, videos, going outside or in the car or wanting someone to lie down with her or go away from lying down with her.  I know what foods she likes and what movies she likes.  But I don't know if she likes school.  I don't know if she likes certain kids her in class better than others.  I don't know if she wishes she could talk more, if she wishes she could read.  I have no idea.

I often look at Janey's face, trying to figure out what is inside, in her mind.  So often, her face doesn't let those secrets out.  She so often has what I think of as her reserved look.  Some people call it an autistic look, and indeed, it's a look that I think is common with a lot of autistic kids.    It's a guarded look, a look that seems to be designed to keep her safe from being asked to do things she doesn't want to do, safe from well-meant but invasive demands--- "Look at me!  Tell me with words what you want!  Tell me about school!  Answer me!"  It seems to be a way she retreats into herself, closes herself up.  Maybe autism is the ultimate way of wanting privacy---she keeps her counsel.  But oh, how I wish she would, or she could, let me know what she is thinking, even just a little.