Being a Skeptic

I wish I wasn't a skeptic.  But I am.  I don't take much at face value.  Once I got a big pile of Skeptic magazines at a thrift store and read through them all.  They depressed the heck out of me, but I couldn't stop reading.  The favorite phrase of skeptics is "extraordinary claims require extraordinary evidence", and I have to admit I do agree with that.  If you are telling me something that is hard to believe, I need very strong evidence to be convinced.  I wish I wasn't like that.  I wish I had more faith.  I wish I could believe more of what I hear without that voice in my head saying "I think there's more to this.  I'm not sure this is true.  I need to learn more about this before I accept it".  But I can't.

Lately, I am reading more and more about people with autism who are non-verbal or have very limited verbal abilities using typing to show that they have far more going on in their heads that anyone would have guessed.  Now, I do believe that Janey, and a lot of kids, have far more in their minds than they can express.  That is part of autism---that what a person with autism knows is not always easy to get at.  And I know that sometimes with Janey, she needs a hand over her hand to get her started in picking the right answer.  I also know it's EXTREMELY hard, when I do this, to keep from nearly unconsciously guiding her to the right answer.  Sometimes I'm almost sure I'm not, but then I realize I am.  Then I step back and make sure what I am doing is just a very light touch to get her started.  I have started closing my eyes when doing this, to keep from being able to guide her.  Or I put up something between me and the screen she is seeing, to make sure I don't guide her.  And when I do this, she gets a lot less answers right.  I don't EVER want to delude myself into thinking Janey can do things she can't.  This is because that does her a HUGE disservice.  I value Janey for who she is, not who I wish she was.  

I know this is a very touchy area.  And I know that some people with autism type independently, and I know some people start out with what is called Facilitated Communication (read about it here) and then move on to typing on their own.  And I think it's possible that some people communicating through FC (as it's nicknamed) are truly typing their own thoughts.  But I am skeptical.  Saying I am skeptical means something hugely different than saying I don't believe people.  It means I want proof.  I think in this particular situation, proof is something hugely important.  It makes a huge difference in Janey's life.  If people with autism that appear to be even lower functioning than Janey are able to go to college and write poetry and so on using FC, then I need to rearrange my thinking about Janey.  But I am not going to do that on faith, and the history of proving FC is true so far is pretty checkered.  

This article is what got me thinking---it has a lot of interesting information.  (see it here)

I don't ever want to say that I don't believe people.  And that is not what I am saying.  I am saying that I am a huge stakeholder in the task of finding out exactly what people with autism are capable of.  I don't just have an academic interest.  I have a heartfelt, extremely personal interest.  I don't wish to tell anyone else what to do, what to believe, what to think.  I would never want to do that.  My work, my life's task, is to let Janey be what she can be, what she can truly be, and to celebrate her for that.

Losing my religion

This is a post I probably shouldn't write, but I will anyway, because it's on my mind so much lately.

Before Janey was born, actually when Freddy was still a baby, I started going to a church right near our house, The First Congregational Church of Hyde Park. I loved it there---I loved the minister, Jackson Smith, the building, the organ music, the hymns, the people. It was a very, very small congregation, and got smaller and smaller and smaller as time went on. When Janey was about 2, it closed and the church building was sold. Jackson died a few years after that. His funeral marks the last time I was in a church.

Even before the church closed, we had stopped going regularly, or going as a family. Janey was not yet full blown autistic then, but already at 2, she could in no way be at church without completely disrupting the service and making it completely impossible for us to get anything out of it. The church was too small to have a nursery, but even if it had one, I am pretty sure they couldn't have handled Janey even then. So either Tony or I went, or a lot of times, neither of us. It was sad for me, but I thought of it as temporary.

However, it wasn't. We tried another church a year or so after ours closed, and it was easily apparent that there was no way it was ever going to work. Janey can't be cared for by anyone without experience with autism, and she cannot be in church with us. It isn't a matter of her being fussy---she will SCREAM, run around, get completely hysterical. It's not fair to anyone there. There are too many noises that upset her, too much quietness, hard seats---who knows what, but it would be impossible. I read a book recently about a woman with an autistic son---the woman's father is a well known religious figure, and even she was never able to take her son to church or find a church that would work. That made me feel a little better. Churches are not set up to deal with autism, at least in a way that would allow the boys to go and allow Tony and me to listen to a sermon together.

I was never very strong in whatever faith I had. When I was going to church all the time, I felt very comforted by it, but I was never sure if that was God or just the ritual. Now, I am less and less and less sure I believe at all. I would not call myself an atheist. I haven't lost all belief, or hope for belief. I have tremendous respect for anyone who does have faith. I wish I did. But I don't think I do. Part of this is the question that everyone asks---why does God allow bad things to happen? Why is Janey autistic? What is the reason for that? It's a lot easier for me to think there IS no reason, or no plan, than to think it's part of a plan. I have a wonderful friend who tells me that often, God's plan isn't ever revealed to us. I respect that opinion, but I don't know if I believe that. Or if I do believe it, I am not sure if I liked it. Why would God make a plan that involves making a 6 year old girl autistic and retarded? And that is a mild sad thing compared to many other things I can't understand God doing---cruelty to children and animals, wars, children born with horrible diseases that will result in their death, and just all the meanness and horribleness out there?

I do differentiate between faith and church. My faith is not dependent on having a church to go to. But it would help. I think there is a huge unfilled need for churches that could welcome families with an autistic child. It would mean the world to have a church to go to that would have childcare for autistic children, and that would even find a way to include them. Janey could learn hymns. She could learn to repeat Bible verses. She could just feel the love that a good church can give. I have a dream of us all going to church on Christmas Eve. Janey loves the carols so much. I think whether she understood the Christmas story or not, it would make Christmas mean something to her. But I don't think this is going to happen. I've asked around, done internet searches, even had my mother's minister research churches in the Boston area, all in vain, to try to find a church that might be interested in working with us. Almost all churches would welcome us, but I want a church that would embrace us, that would take good care of Janey while we were at a service, that would love her. I want this, selfishly, even though I am not sure I believe in what churches are there for.