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Thursday, December 13, 2018

"Kitty" or When Will I Ever Learn?

A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed".  It's in fact her bed, not mine, but we do snuggle.  Generally, we just lie there next to each other and talk.  Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs.  She talks very little, most of the time, but she's very happy to just be there together.

Sometimes, this snuggle time can start to feel like a one man show.  It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.

Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud.  I can't hear inside your head.  I can only hear things you say. I love to hear you talk.  If you said 'Kitty' right now, I'd be very, very surprised and happy!"

Some background---Janey loves me to act surprised.  I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised.  I'll ham it up, opening my mouth wide and waving my arms around.

For a few minutes after I talked, Janey just looked at me with a huge smile.  And then she quietly and sweetly said "Kitty!"

Of course, I played it up---a huge show of surprise.  She smiled her huge, wonderful smile.

And then, as I so often do, I had to push her.  I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"

I hate it when I do that.  And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.

After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down.  Her eyes lose their glow, and look away.  She looks not happy but instead tense, worried.  She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.

We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy".  I made myself stay quiet.  Finally, I said "William and Freddy!  That's the names of your brothers!"  But still, she had the tense look.

Why do I do that?  I KNOW she knows her brothers' names.  I KNOW she listens to me.  Why do I have to get it proven to me, at the cost of her happiness?

And of course this relates to the problems with ABA type programs.  They are all dependent on the child having to prove over and over and over and over that they do know what they know.  In a way, they seem especially designed to torment kids like Janey.  I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are.  Once Janey knows something, she knows it.  She's shown over and over that she doesn't forget anything.  But she's not always going to perform on demand.

I'd like to say I'll never make the mistake I made last night again.  I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening.  But I will probably do it again.  I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.

Tuesday, December 11, 2018

Vision Statement

When talking to a friend today about IEPs, we hit on the topic of vision statements.  I had noticed that IEP meetings often start with us being asked what our vision is for Janey's future.  I had thought that was just kind of a warming up question, but in reading a bit, I realized it's required in some states, and used in most.  Here's a link to an article about it.

That got me thinking.  I don't think I've ever planned an answer to that question, which is probably because I don't spend a lot of time thinking about visions for the future.  Maybe that's just me.  Someone once asked me what I had wanted to be when I grew up, and I thought about it and realized I never really had an ambition.  I figured life would happen as it's going to happen, and it has.  That's not all good, of course, but I don't think it's all bad, either.

But what IS my vision for Janey in the future?  I made myself think about it today.  It's tough, because my mind likes to think up scary scenarios.  It goes to places that certainly aren't my vision, unless it's some unbid vision from some dark places.  And maybe that's my problem, the word vision.  A vision is something that seems to be to be given to you.  You don't read poems or old literature about PLANNING a vision.  You GET a vision. 

But if I try to plan a vision, a quote keeps getting in my way, one that I remember hearing for the first time and thinking "Well, that's the most insightful thing I've ever heard"  It's been attributed to various people, but I'll pick John Lennon, and it goes "Life is what happens to you while you're busy making other plans"  There are so many variables, so many surprises, so many detours, that life really is what actually happens, as we plan for a different life, one we never actually live.

Okay---all that said.  But still, I want to try to have a vision. 

Here it is, the honest one, what I really do want for Janey.  I want her to live with Tony and me, until we are gone, until we die or are too sick to care for her.  I want those years with us to be happy years.  I want her to have as much agency as she can over her own life.  I want her to make choices as to how she wants to spend her time, and I want to honor those choices as much as possible.  I want her life to be as free from pain as it can be.  I want her to always be with those who truly love her.  I want her life to continue the best parts of now.  I want her to have car rides with Tony, to snuggle with me and sing Christmas songs together, to watch her favorite movies and dance with excitement, to ask in her sweet voice for bacon or coffee or soup or tomatoes and get them.  When we are no longer able to care for her, I want her to live with one or both of her brothers.

I don't feel like that's what I'm supposed to say.  I think I'm supposed to want more independence for her.  I think there's supposed to be some kind of sheltered work in there.  I think I'm not supposed to rely on her brothers to take up her care.  I think I should include skills like using money, or riding buses, or doing dishes.

Fear hits me here.  Right now, with Janey going to school, I feel able to trust her time away from us is safe and meaningful.  And maybe that could continue, with a group home or a day program or something else for autistic adults.

But something haunts me.  It's a remark by the adolescent specialist we've been seeing, to try to figure out a few physical differences in Janey's development.  At the end of a good appointment, she said "Well, we do want to start Janey soon on something to prevent pregnancy"  And although I should have heard enough to not have been knocked flat by that statement, I was, indeed, knocked flat.  Even though many years ago, Janey's psychiatrist put it more bluntly, telling us "She WILL be abused"  What kind of world do we live in, that because Janey is non-verbal and sweet and beautiful, she WILL be abused?  NO.  NOT ON MY WATCH.

But of course, that isn't my only fear.  Tonight, as I wrote this, Janey was using her iPad.  Or trying to.  YouTube wasn't loading.  Her talking, after some good stretches, is at a low point right now.  And she is tired---her early to bed genes are strong.  So she said nothing.  I was distracted by writing when I thought she was watching videos, while instead, she was endlessly touching a link that didn't work.  A small thing, but somehow it brought up thoughts of her not being understood, of wanting the small things she wants and not knowing how to communicate them, of her either crying in despair or even worse, just silently trying and trying and never getting what she is trying to get.

I have more thought about this, but this is dark enough already.  I'll try to salvage some good from this thought exercise.  The purpose of asking for a vision is, of course, to prepare for that vision, to know what needs to be done to make it come true.  How can we prepare for our true vision---Janey here with us, happy and living a meaningful life?

We can teach her how to access the things she enjoys, like movies and videos and music.  We can work on simple food preparation more, so she can fix herself the meals she loves when she wants them.  We can keep her healthy, free of physical pain as possible, free of mental torment as much as we can.  We can work on coping skills for her for things like waiting, so that half hour she sometimes has to wait for a ride doesn't lead to tears.  We can try, although this is a hard one with our current finances, to prepare for when her brothers care for her, to leave her somehow or other a trust.  We can arrange our house and our lives to give her what she needs and still preserve enough of what Tony and I need so we are all happy, not burnt out.  See---this vision planning works a little!

I have a bigger vision, if I really work at it.  It involves not just Janey, but the whole world of Janeys.  It's a vision of a world that includes people like her, that keeps them safe while giving them full lives.  It's what we've been lucky enough to find in schools for Janey, extended life-long.  I don't see that world happening any time soon, but I can plan for that vision, too.  I can keep talking about Janey's life and her needs and wants and talents.  I can vote for politicians, regardless of the ugly partisan world today, that understand special needs.  I can push in the small ways I am able for a future that better matches the hopeful plans we make when we love our children like Janey.