Being Janey's voice, without apologies

Usually, I deal with viral type controversies about autism issues by ignoring them.  I've always felt that you can't get insulted by things you don't read or hear about, so I usually avoid reading a lot online about autism and autism parenting, which is kind of ironic seeing as I write a blog about those very issues.  But I think of this blog as being more about Janey, a specific girl with autism, than about autism in general.  I love it when it's helpful to others, and I love extremely much hearing from other mothers, but I don't try to speak for the community.  I couldn't do that.

However, I do try to speak for Janey, and I've been surprised that lately, that seems controversial.  It seems like it started with a post on a blog called The Mighty, which (like most special needs blogs except those of friends!) I haven't read.  Someone posted something called "Meltdown Bingo".  It wasn't in the best of taste, and if I had seen it, I think I would have not liked it that much, but then would have moved on.  It takes a lot of energy to get outraged, so I save it for extreme things.  But it seemed to open up a big debate, in which a lot of people said things like "nothing about us without us", meaning nobody should write about autism unless they are the person with autism.

I want to say here---if I've ever insulted anyone with autism by writing about Janey, it was absolutely never my intention.  I would hate to think that I had.  But with that being said, I don't agree that I shouldn't write about her.  I'm pretty sure not everyone with autism would agree I shouldn't write about her, either.  People with autism don't speak as a group.  Some of them, like Janey, can't really speak for themselves at all.  And that is why, of course, I try to speak for her.

It is so confusing to me why someone would say that if Janey can't write a blog herself, she shouldn't be written about.  That just seems---well, mean.  Does that mean that nothing should ever be written except in the first person?  Does it mean that everyone in the world who can't write should never be written about?  Or is this just some special case for autism?  If so, why just autism?  Would it be okay to write about Janey if she had some other issue?  I'm asking these questions theoretically, of course, as I figure if you are reading this blog, you are probably okay with me writing about Janey, but I really do wonder what the reasoning is.

Janey can talk a little.  She can't read, or write, or generally speak in complete sentences.  She is very developmentally delayed---probably functioning at about a two year old level in most ways.  Barring miracles, she will never write a blog.  She will never give speeches, she will never write a book, she will never self-advocate.  But her life is valuable, and her experiences are meaningful.  I share them in many ways because she can't.  I don't write about my sons very much.  They are completely capable of writing about themselves if they want to, and I fully agree that I shouldn't write about them.  But Janey? That is very, very different.

I wonder sometimes if the reason people don't want parents to speak for their kids like Janey with autism is because Janey is not the face of autism that many want put forward.  She is not an inspiring story in a traditional way.  She doesn't have special abilities, she has not responded to assisted communication, she is not making progress in any significant way academically.  But she is a face of autism, just as much as the college graduates with autism or the kids with autism who use letterboards to write books.  She is unique, fascinating, beautiful, interesting---she is a person worth knowing despite how hugely challenging her behaviors and limitations are to us and I'm sure even more to her.  I will be her voice as long as I am able.  She's worth it.

Speaking for Janey

There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia.  I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey.  But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material.  Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.

I very much feel that whenever possible, it's important to listen to people with autism.  I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook.  Thank you, Sophie!  However, I kept feeling when reading the criticisms---what about Janey?  What about kids like Janey, who cannot speak for themselves?

Of course, in some ways, Janey can speak for herself.  She can tell me her basic wants, if they are in words she says---"Snuggle on the bed!  Want cheese!  Want Chinese food!  Do you want to take a car ride?"  That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it.  She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much.  Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.

And that is where I come in, and my husband Tony, and my sons.  We speak for Janey.  We might not always get it right, but we try.  We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.

Tony wrote about life with Janey as a guest post here, and I loved it.  William and Freddy, my sons, have written guest posts too.  When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog"  And of course, she can't.  Or can she?  I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing.  I'm sure I haven't been perfect.  I'm sure there are things Janey would have wanted everyone to know that I haven't written.  But I've done the best I can.

If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people.  Should I never speak for Janey?  Should I wait until the day that might never come, when she can speak for herself?  I don't think so.  I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey.  She deserves that.  When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice.  She deserves that.

Self-Advocacy

In my recent blog reading frenzy, I read a few autism blogs that were about self-advocacy for people with autism. It was interesting reading. Not a whole lot of it applies to Janey right now, and that's not so much because of the autism but because she is seven, and if you let most any seven year old advocate for themselves, you'd run into some fairly big problems. However, I think there were a few lessons to be learned from what I read. It made me question---do I let Janey make the choices she is able to make? What choices CAN see make? I thought about what most seven year old can choose for themselves. They choose what to wear and what to eat, to a limited extent and from a limited set of choices, they choose who to play with at recess, again from a fairly limited set, they have a voice in what toys they are given, things like that. The big area they probably do have a lot of choice with is how to send their leisure time. Or at least they do if they aren't scheduled into all kinds of lessons. I was never much into doing that, so at seven, my boys had a lot of time to choose how they spent. Freddy spent that time as he does now, playing video games. William thought about, wrote about, drew about, read about trains and other forms of public transit. So do I let Janey choose her own leisure activities?

She does pick what videos she wants to watch, within our tolerance for constantly changing the disk or tape or Netflix. She is getting close to being able to do this herself, and that might be a big step for her getting to pick her own viewing totally. The other big "toy" she likes is the iPad, and that is where I don't think I've done a great job letting her have her own fun. The iPad is for lots of things. It helps her learn at school, which is wonderful, it helps with her speech therapy, it helps her write. I truly think it will revolutionize education in some ways. But at home, I think I was seeing it also as an educational tool. And it is, but I don't need to push that aspect. I didn't make my boys spend their time at home reviewing schoolwork at that age---I was quite opposed to that. But with Janey, I watch what she does and constant try to redirect her to "useful" apps---matching letters, math "games". And she sometimes like them. But other times, she wants to just have fun. She likes Toca Boca Tea Party---she sets up the tea party over and over and over, and pours tea and passes out treats. She likes a puzzle app that I find very poorly done---pictures that seem to be randomly cut into pieces. She picks one of a bunny and does the first 5 or 6 pieces over and over, with tremendous enjoyment. At Christmastime, she played with a animated song app every chance she got. And WHY do I try to prevent this? She seems to enjoy these apps very much. She switches between them---it's not obsessive hours on one of them. I think it's partly because even though I don't feel it in my heart, I have a little bit of that frantic "She has to learn all the time! She has to get FIXED from this autism!" Also, it's partly because I can---I can switch her to another app, I can put away the iPad, and she doesn't totally have the words to tell me "Mama, I wanted to play that! I love that game!" that the boys would have at that age.

I'm not sure what to conclude here, but I think it's important I keep in mind that Janey needs to be allowed to make leisure time choices as much as possible. I'm going to try to ask myself when I have the urge to re-direct her "Would I have done this with the boys at her age? Is what she is doing really hurting her in any way, or just annoying me somehow? Is she truly enjoying herself, or just stuck?" I think I'll be changing my behavior a little.