Wednesday, July 31, 2013

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

1 comment:

Mary Leonhardt said...

Your blog is also a vivid window into the reality of living with a girl on the low end of the autism spectrum, and I think it's very valuable for that as well. It's very hard for me to believe that anyone could read your blog and still hold the belief that if parents just tried harder, or used more discipline etc. their child would turn around.

And I've been thinking and thinking about the problem with Janey crying. I can't even imagine how difficult that must be for you, esp. as it seems to be one of those problems for which there are no good solutions--only less bad ones. It seems to me that clearly the overriding goal is to help her acquire behaviors that allow her to function in a family and (maybe later) in a group setting, but how to get her there . . .? Whew! No idea.